tag:blogger.com,1999:blog-84762354011015789792024-03-15T18:09:59.013-07:00SeekingBostonMarathonI started Seeking Boston Marathon to hold myself accountable for my goal of qualifying for the Boston Marathon. After running five Boston's, I became sick in January 2020 with Covid and still suffer long-term damage from #longcovid. My current focus is healing from and documenting my journey to get back my life and the sport I love including racing with my buddy Liam with Team Hoyt San Diego. Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.comBlogger593125tag:blogger.com,1999:blog-8476235401101578979.post-26740535747427503802024-02-09T08:00:00.000-08:002024-02-09T08:00:09.079-08:00Long Covid, Turbo Cancer, and Fast Car<p>I can't remember (insert Long Covid cognition joke) who said it that "nothing makes you appreciate living than nearly dying"--or maybe I was the one that said it back in 2014 when I crashed in a triathlon and nearly died on a Saturday night in the ICU of Memorial Hospital in Colorado Springs.</p><p>I had nearly come to terms with my disabled Long Covid life in July of last year with my wife. We traveled to Martinos Center for Biomedical Imaging at Massachusetts General Hospital in Boston for a Long Covid brain study with Dr. Michael VanElzakker. We'd parlayed the volunteer trip (on our dime) into a luxury hotel (<a href="https://libertyhotel.com/">Liberty Hotel</a>) stay in downtown Boston.</p><p>It was a trip down memory lane as "Mrs Seeking Boston" and I had grand memories with my five Boston Marathons. Without working or running anymore, I hadn't been back to "Beantown" since my last marathon there in 2015. Energy limited what I could do, but we certainly spoiled ourselves with the phenomenal hotel and great meals while we were there. I felt we'd got to a point where we could both enjoy what we were able to do (even if it was room service in a five-star hotel) versus what I used to be able to do.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy7H7Da-P6UT5GCndz1Et7M_i_PJKRUWgRP8RXaGn5glHIQBsGV6tY_AONC2mMv_WRpj5f5vl7opFvxfMwpYrgUgIbgp8Yad4iKKMFdvpt8mBmu3XIjFFlLIAWq1uJpRiI6_b0bWFzQyN7C6LIaQ0Nv-4N7nAtdlcNmwEddOOihm_Y3QfLoV0O0Bc39U-O/s2251/PSX_20231231_123324.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1179" data-original-width="2251" height="336" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy7H7Da-P6UT5GCndz1Et7M_i_PJKRUWgRP8RXaGn5glHIQBsGV6tY_AONC2mMv_WRpj5f5vl7opFvxfMwpYrgUgIbgp8Yad4iKKMFdvpt8mBmu3XIjFFlLIAWq1uJpRiI6_b0bWFzQyN7C6LIaQ0Nv-4N7nAtdlcNmwEddOOihm_Y3QfLoV0O0Bc39U-O/w640-h336/PSX_20231231_123324.jpg" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>Then came some "new symptoms" that I couldn't tell if it was the impact of Long Covid or something new. Hard to tell, but I know it was mid-summer I felt like I'd "pulled something" and had some pain in my groin area. In parallel to that, I'd experience some "plumbing" issues with my urination--inability to empty the bladder and frequent urination at night. (see "growing old for men.") Perhaps lost in the blur of everything else going on medically, I reached out last July to my primary care to set an appointment to talk about it.</p><p></p><p>As usual, this post meanders a bit more like "kernels of popcorn in the microwave," but it certainly mimicked my migration to Medicare on July 1, 2023 as it was a confusing process. As part of being approved for Social Security Disability (on top of my private insurance disability--they deduct any SSDI from what they pay; which is why they funded my lawyer) I migrated to Medicare. Perhaps a whole blog post in and of itself, but I essentially migrated from (working with) great insurance, to very expensive COBRA insurance, to even more expensive private market insurance, to Medicare.</p><p>Along with Medicare we selected a supplemental Medicare Advantage plan--again; more money but far cheaper than private insurance or COBRA. We selected an Advantage plan that worked with my neurologist and my primary care--among other reasons. Our surprise was calling July 1st this last year (or thereabouts) to talk about my (ahem) "plumbing issues." To my disdain, they politely said "oh yeah, we need to fix that website, we don't work with that insurance." Curses...</p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD0XJ44tJr2Fk8_ky6PBQYWpXsax2CSGJTL2pZzv_WxGCN0lLDEyOmIYleJKAL194WItv0IbkyP5O8frNSL2pV6Ka2l213j66BdCxE2Smkd_iKCmbjvqWCx5EOeVAbVmUr4_f4PKp_IAGCspzuo1KKePRF0PuLW7W0a372tm12Go5ewp0pHMhbNK8r1P97/s2048/GAMQHH0WYAEpJoX.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1153" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD0XJ44tJr2Fk8_ky6PBQYWpXsax2CSGJTL2pZzv_WxGCN0lLDEyOmIYleJKAL194WItv0IbkyP5O8frNSL2pV6Ka2l213j66BdCxE2Smkd_iKCmbjvqWCx5EOeVAbVmUr4_f4PKp_IAGCspzuo1KKePRF0PuLW7W0a372tm12Go5ewp0pHMhbNK8r1P97/w360-h640/GAMQHH0WYAEpJoX.jpg" width="360" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">PET Scan December 2024</span></i></td></tr></tbody></table><p></p><p>This started the process of seeking a new primary care doctor that was in my insurance network that could at least spell "L-o-n-g C-o-v-i-d" or knew what it was. I found one but it was months out to get an onboarding appointment. Feeling the pain (of the experience trying to navigate Medicare,) the pain in my groin, and trying to find a new doctor, I called an "audible." I went in to urgent care this last August with chest pain (again) and figured I'd have them check out the plumbing as well.</p><p>The EKG was normal and I got yet another hypothesis for the chest pain. The physician assistant then had me "drop the drawers," turn my head and cough. The PA felt what he thought was a hernia and put in a referral to a surgeon. Three weeks later; the surgeon performed a sonagram to look at the area in question. I walked out without a Spiderman sticker and the test results were negative for a hernia. The doctor suggests a physical therapy consult.</p><p>Another month passes and I finally have my new primary care appointment in September; 3-4 months after I notice this new pain. I really liked the new doc and he seemed quite literate on Long Covid. He was also in the same hospital network as my neurologist which is UC Health. Dr Sanchez did a full "onboarding" with loads of questions, bloodwork, and among the blood tests he runs was a PSA (Prostate Specific Antigen) test which screens (not definitively) for prostate cancer.</p><p>Normal PSA levels are 1-4 and mine came back later that afternoon as 77. This prompted a cascade of appointments and tests with a Urology Oncologist who ordered an MRI and biopsy. I liked the urologist and he initially allayed my fears of the worst. At this point, I'd comment that the good news with medical "portals" is you get news right away; the bad news is you get news right away. A handful of scary words can be "triggering" read off a portal without the expertise immediately of the doctor who ordered them.</p><p>The MRI noted a "<a href="https://www.cancer.org/cancer/diagnosis-staging/tests/biopsy-and-cytology-tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html#:~:text=Cancers%20with%20a%20Gleason%20score,poorly%20differentiated%20or%20high%2Dgrade.">Gleason Score</a>" of eight which (8-10) is the in the highest category of prostate cancer considered "high risk." My oncologist "talked me off the ledge" but indicated it was (with MRI and PSA in hand) likely stage III cancer that had metastasized but he needed the biopsy (and subsequent full-body PET scan) to definitively label the "level" of cancer and its' spread. </p><p>Once we had the biopsy completed (and again panic as my wife and I read it from the portal before the consult appointment) we met again with the doctor. His usual disarming conversational tone and charm (I'd established joking as my defense mechanism) had changed to a more somber conversation in his office just prior to Thanksgiving. I can't remember the exact words, but it was essentially "it's not good news." I had stage IV cancer that had metastasized to the bone. He would schedule that full body PET scan two days later.</p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTk3jCcIPi-KpKrRH3tfnwMtb-_4gFTka8AIZrdpRffOaEnh75b_X1-r0hz_7s_dpWRnBIz0WfkYwAEKHK4v3A27gcOxqLD00F6xV-AvqYBWuhK6z_IW-YxIepbqyrTEp5PWToTcG5nkuxpBRHz6ZLJMZbRgHHSwoNwyYh9UUzyJZYXodnJczs4UHC0mB3/s2048/F-hcZn7XYAA-wRA.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1153" data-original-width="2048" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTk3jCcIPi-KpKrRH3tfnwMtb-_4gFTka8AIZrdpRffOaEnh75b_X1-r0hz_7s_dpWRnBIz0WfkYwAEKHK4v3A27gcOxqLD00F6xV-AvqYBWuhK6z_IW-YxIepbqyrTEp5PWToTcG5nkuxpBRHz6ZLJMZbRgHHSwoNwyYh9UUzyJZYXodnJczs4UHC0mB3/w640-h360/F-hcZn7XYAA-wRA.jpg" width="640" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Yet another MRI; this time focused on the groin area</span></i></td></tr></tbody></table><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>My mortality panic ensued when I asked him "how much time do I have left" and quickly followed with; "how are we going to treat it, are we going to do chemo?" His answer was "are you sure you want to do that; wouldn't you rather live your life?" We interpreted that as it was too late for treatment. The doctor held my hand as I held my wife's. We cried in the office, we cried at the deli on Colfax Avenue in Denver on the way home.</p><p>"This can't be right," I'd continue to mutter to myself. I'd already "come to grips" with my life. I wouldn't likely see my 70's or 80's like both my parents did due to the decline of my Long Covid body. While we can't definitively connect my cancer with Long Covid, my urology oncologist said that my "broken" immune system likely set me up for not being able to "fend off" this cancer. Fortune Magazine said as much in their <a href="https://fortune.com/2023/11/23/inside-long-covids-war-body-researchers-trying-find-out-virus-potential-cancer-carolyn-barber/">recent article</a>, "</p><p>My urologist referred me to "the best" medical oncologist in their network, but that appointment seemed months away but set for January 4th. My aunt who's been my "favorite aunt" (no disrespect to my other favorite aunt Joan on the East Coast) was in town. I texted my sister that I needed them to come over to share the results. Aunt Marge (who was still grieving the loss of her sister and my Mom last year) showed up with my sister Kim, (her husband Marc,) and my brother Todd.</p><p>We sat on the sofa in front of the fireplace. I couldn't make eye contact as I didn't want to hurt my aunt and family. I stared at the floor and said, my doctor got my (biopsy) results back and it's "not good." I collapsed in tears and my wife shared the rest of the details. I had to then let my daughter know. For some reason that was the conversation I feared the most.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0okrOVXGoe8qNMo1dg6ovLxNXYE7Q-P9pKsEcgHKb7LT6DYp8AwgDu5OBP5jmxfZF7cKh406yFdHhR7RXQ6Y4_-Pi_o7NYbXbLFE8MbvVQkZij2Fu1IV63VQvWMjkPB5k8IZZSGYB_uajaVUdnBcWt0fmXcGwsWufyqRbQWzRzdeqV2tpGJa8hJWF1Xbb/s1200/akiko.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="300" data-original-width="1200" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0okrOVXGoe8qNMo1dg6ovLxNXYE7Q-P9pKsEcgHKb7LT6DYp8AwgDu5OBP5jmxfZF7cKh406yFdHhR7RXQ6Y4_-Pi_o7NYbXbLFE8MbvVQkZij2Fu1IV63VQvWMjkPB5k8IZZSGYB_uajaVUdnBcWt0fmXcGwsWufyqRbQWzRzdeqV2tpGJa8hJWF1Xbb/w640-h160/akiko.jpg" width="640" /></a></div><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>I'd gone to a family friend's wedding last summer and cried as I watched one of my best friends of nearly 40 years give the "father of the bride" speech and dance with his beautiful daughter Kaila. I cried as I wasn't sure I'd have this moment with my daughter. A wedding and grandkids seemed out of reach in the time I thought I had left. I was amazed with the maturity and optimism my daughter Nikki displayed when I told her. It gave me some strength.</p><p>As I pondered my life, I feel I've accomplished much with my marriage and raising three kids. I've traveled the world as far as the Taj Mahal in India and the Great Pyramids in Egypt, but I had so much more life to live in the (what I thought was) the final decades of my life.</p><p>
Based on the Dr.'s consult and him discouraging treatment, I had the Christmas holiday and New Years to ponder my cancer and mortality. I had "new pain" coming from my bone cancer that was different than the arthritis I was able to manage for years attaining five Boston Marathons. </p><p>I took an obvious needed break from the online Long Covid community as that seemed insignificant despite the solace and solidarity I'd built through X (formerly known as <a href="https://twitter.com/seeksboston26mi">Twitter</a>.) I didn't miss it and focused on my wife, family, and living as much as I could.</p><p>This has been my longest hiatus between blog posts for my former running blog turned Long Covid recovery journey and advocacy blog, now to a fighting cancer blog. I felt like I needed to get words on paper (or typed on a laptop) to share or advocate just as I have throughout my Long Covid experience online.</p><p>Before entering the holidays and meeting with the medical oncologist, my urology oncologist said that the medical oncologist would likely start me on hormone deprivation therapy; so we started with two shots to the belly in our final (consult) appointment and another dose a month later. He described this as chemical castration. I won't delve deeper into what that meant but I'll let you Google that one on your own. Another thing stolen from me since 2020 when this all started.</p><p style="text-align: center;">
<iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/gu74YK1ioq4?si=m1UMtOWq3Du0Mxhg" title="YouTube video player" width="560"></iframe>
</p><p></p><p>Before the end of the year, I put my Long Covid clinic on pause as quite frankly, fighting cancer right now is a higher priority despite no breakthrough or change in my symptoms there--I still have (micro) blood clots, I have damaged mitochondria, endothelial damage, neuropathy, vasculitis, cognitive impairment to name a few all associated with Long Covid. For the first time, we both wept as I described my diagnosis to my RTHM (Long Covid clinic) doctor. He cared so much about getting me better, but now another leg of the marathon was ahead of me.</p><p>During a routine update to my private insurance senior case manager, I'd previously made her aware of the pending PSA tests and gave her my Stage IV cancer updated diagnosis. It seemed ironic when she (actually has been pleasant and understanding of my illness thus far) asked, "so how are you feeling otherwise?" I stifled a sarcastic laugh and explained that sofa and bed rest have increased and symptoms of Long Covid have not dissipated. I feel worse.</p><p>As I tried to maintain some level of decorum through Christmas, my wife was amazing. She knew what to say, sometimes not saying anything, or letting our emotions out. We tried to not let our mortality imaginations run wild. Despite this, this whole experience messed with my psyche during the day and especially at the "witching hour" as I call it; after 8 PM and whenever I eventually fall asleep each night as I pondered what lies ahead.</p><p>We did have two very special moments that stick out in my mind as we processed the news over the holidays; watching a sunset together one night and another night having a dinner date. Those nights I did feel like I loved her like it was a "first date" all over again. I was "George Bailey" (from the 1946 film, "It's a Wonderful Life") as "the richest man in town" when measured by the love of my wife and those closest to me. Maybe it was glimpses of either acceptance or a sliver of hope.</p><p>Once the few Christmas presents under the tree simply adorned only with lights (not having the energy to hang ornaments this year) were unwrapped, my adult kids went their separate ways and the house was empty except for the twin pups, my wife and I. The house was eerily silent and I tried to fill it by watching sports and Netflix--trying to distract and occupy time waiting for January 4th. The clock and the calendar moved slow.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYgTEwn4k0dUv4c9Xwgp2zNf1M447Gx6n1p6MljpB5RCTnJldRJTYrfGPz837H_fXQK5gcTYtj3_ifLaqCtRdGjtDA2oLJvC5XoRI9wE0fi5QrgjZZZjHXVtCZXlXAlRwlj5YGfocIHmPvaEn7BxEL-I1i8nUBZY8RNscK2RIx_T14g8N4VGe_iqx1GVda/s1920/GACUBYfWEAAdzLi.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYgTEwn4k0dUv4c9Xwgp2zNf1M447Gx6n1p6MljpB5RCTnJldRJTYrfGPz837H_fXQK5gcTYtj3_ifLaqCtRdGjtDA2oLJvC5XoRI9wE0fi5QrgjZZZjHXVtCZXlXAlRwlj5YGfocIHmPvaEn7BxEL-I1i8nUBZY8RNscK2RIx_T14g8N4VGe_iqx1GVda/w640-h360/GACUBYfWEAAdzLi.jpg" width="640" /></a></div><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>I spoke to an old college friend's wife. He had a terminal cancer diagnosis with little time left. He's still here eight years later. In my mind, I felt if I'd get eight years I'd consider that a "win." <p></p><p>Sorry for the length of the update, but it's hard to fit this type of experience into a few words.</p><p>The day came and we'd joke later that you know you're getting older when your doctors are younger than you are. as young doctor Eule walked in and diffused the conversation quickly with a brief introduction and asked me, "what do you know?" (about my cancer.) </p><p></p><p>I repeated what I knew; my PSA was 77 and jumped to 117 which prompted an MRI, biopsy, and full-body PET scan. My urology oncologist said it was stage III cancer but pending the PET scan, it would likely be stage IV. Once again with the advantage of having the portal report of the PET scan we knew it had spread to several areas of bone, but hadn't spread to organs.</p><p>I shared what I thought I'd heard from a life expectancy standpoint, but "individual results" may vary.</p><p>He was surprised and stated that I summarized it well. It was in fact stage IV, but was quick to point out "there are treatment options" met with a huge sigh of relief from my wife and me. He said that it was common for prostate cancer to "jump" to bone but not common to spread to organs. He confirmed my hope that there was no organ involvement (yet) based on the testing. While prostate cancer is treatable, bone cancer (mine at least) couldn't be eliminated but we can treat and try and curb its' growth.</p><p>Think of testosterone as the food of the killer dinosaur named "cancer(us-attackus.") Kill the food (with the hormone therapy) and starve the dinosaur. My analogy not his.</p><p></p><p style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/2Hfqtcvpdnw?si=2dW6TZjnTs1bn9hW" title="YouTube video player" width="560"></iframe></p>The "plan" would start with the hormone therapy (the two injections I had in November and December) going to a periodic (every three month) basis. I would also start an oral (pill) version as well. Man--I guess they really want to starve "Cancerus-attackus." Seems odd to say this or type this but I was happy to hear him say we would then go with a "blast" (my understanding and word, not his) of chemotherapy. I never thought I'd be happy to hear, let's sign you up for chemo, but this meant we were going to fight. I still have fight in me.<p></p><p>More blood tests (one liver panel) and loads of details from the oncology pharmacist that educated us on the months and treatment ahead. It seems that cancer treatment has "advanced" quite a bit even in the last 3-5 years. There were also strategies to try and mitigate the side effects of chemotherapy including nausea. Another glimpse of hope is that Dr. Eule is also a professor at UC Health (Anschutz') associated University of Colorado. </p><p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC4tYg2m5vI7tIBqdl4VH8zJApZPkMcjsP5u5an1thkSkBGjTqhqMy15zzz9DVIww5_MDwKyCWkPdqM6SXj7E2Pr75C82uYU1Ho3PenAMowLvUIWnAWZihFZQ_wn7MmE3y1jVNWOaG4wta8FwlgSolgaiQTa5PAOm6xkyDmiutrXUuhe4r8SHVcpyxEThF/s4000/20231223_193458.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4000" data-original-width="3000" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC4tYg2m5vI7tIBqdl4VH8zJApZPkMcjsP5u5an1thkSkBGjTqhqMy15zzz9DVIww5_MDwKyCWkPdqM6SXj7E2Pr75C82uYU1Ho3PenAMowLvUIWnAWZihFZQ_wn7MmE3y1jVNWOaG4wta8FwlgSolgaiQTa5PAOm6xkyDmiutrXUuhe4r8SHVcpyxEThF/w300-h400/20231223_193458.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Dad and daughter</span></i></td></tr></tbody></table>He (professor) said that position of his could open me up to clinical trials, but none that immediately came to mind but also would have to begin with traditional treatment methods. In parallel, a good friend (and cousin) provided an introduction to UCLA's Prostate Cancer clinical trials--I got a similar response in that they'd want me to pursue traditional treatment before clinical trial consideration. </p><p></p>So this along with yet another researcher here locally that's done some research around mitochondria, Long Covid and cancer I've also been in touch with. Just as I have with my Long Covid, I'm approaching from a standpoint of a realistic understanding of what I have yet not conceding just yet. The most common advise I have got thus far is one's mental attitude means a lot in terms of length of time left and surviving cancer.<p></p><p><br />I've tried to "ward off" that "witching hour" as I've called it and to grab even the littlest thing I can in a day. With that, my wife and I tuned into the Grammy's this last Sunday night and was emotionally moved to tears by the Luke Combs and Tracy Chapman performance of "Fast Car." I can't explain why I was so emotional other than to see the beauty and grace that is the grand dame, Tracy Chapman; her singing seemed magically perfect.</p><p>I copied the link of her performance and sent it to my daughter the next day. She had been "nomading" this last year with her boyfriend while working from Oregon to Canada, Arizona, and Texas before returning home for the holidays. With the future uncertain and the unspoken word of wanting to be "around dad," they signed an 18 month lease to be in Denver. I didn't ask her to do this but like my wife, she's been a beacon of hope and energy of late with the news. Not that my two boys (young men) haven't either but something about the dad and daughter relationship.</p><p>After I'd sent her the video clip, I went to read the lyrics for the first time and became emotional again.</p><div style="text-align: left;"><div style="text-align: center;"><i>See, my old man’s got a problem...</i></div><div style="text-align: center;"><i>He says his body’s too old for working</i></div><div style="text-align: center;"><i>His body’s too young to look like his...</i></div><div style="text-align: center;"><i>I said somebody’s got to take care of him.*</i></div><div style="text-align: center;"><br /></div><div style="text-align: left;">So anyway, thanks if you made to the end of this meandering post, and thank you to those who I may only know from online interaction and most importantly, thanks to Mrs. Seeking Boston, my kids, Aunt Marge, Ruth, and siblings that have been there for me on the latest leg of my toughest marathon yet. </div><div style="text-align: left;"><br /></div><div style="text-align: left;"><i>Footnote: I will start the second oral method of hormone deprivation treatment this week. A month from that (early March) I will start chemo. Shorter updates you can find on my <a href="https://twitter.com/seeksboston26mi">Twitter</a>, or <a href="https://www.instagram.com/seekingbostonmarathon/">Instagram </a>energy pending.</i></div><div style="text-align: left;"><i><br /></i></div><div style="text-align: left;"><i>* I realize that "Fast Car" is based on a drunk, a wife who left a husband, and poverty. At this stage of my life, none of those apply. (smiling emoticon)<br /></i></div></div><div><br /></div><p><br /></p>
Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com7tag:blogger.com,1999:blog-8476235401101578979.post-21881424154125568662023-09-28T14:17:00.133-07:002023-09-29T10:04:19.164-07:00It's a Mad, Mad, Mad, Mad, Long Covid World<p>I don't quite get it. I've given up on "can't we all get along," but don't quite understand how the Long Covid community has veered off onto such an ugly course. I get it. Of all people, I get it. For me, my "48-hour flu" that started back in January of 2020 is now at 32,459 hours. Not that I'm counting. Of course I may already be in trouble because I used the word "flu" when describing my world. Semantics is part of what got us into this mess.</p><p>My theory on "the why" before I get into "the what" is, people are at their wits end--there's another more graphic figure of speech I'd use but highly inappropriate given the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9721155/">high rate of suicide</a> among those with Long Covid. Before you take that line out of context, we are depressed because we are sick and not the other way around as <a href="https://newrepublic.com/article/168965/might-long-covid-wrong">Natalie Shure</a> and other gaslighting journalists would indicate with terms like "<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10059786/">FND" or functional neurological disorder.</a> </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOdteSyK4q2Hhou8wiwMT8Ox2QFtMdtG0H-PENlHexawfzMxQ0rUuclJ2Um_obKLxlAbw1KYfCZM9OHOJ3hwKBZQlIH2rRgZr_XbYG7T7dcy9eqg34GZm1TcDWsZoXiUZLbBmuDNCFc9isYTQgaZIMX3dmwgft7uHeZbXV5Uk9-999heoWwM1KU6pL3mLi/s1920/lc-truce.png" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOdteSyK4q2Hhou8wiwMT8Ox2QFtMdtG0H-PENlHexawfzMxQ0rUuclJ2Um_obKLxlAbw1KYfCZM9OHOJ3hwKBZQlIH2rRgZr_XbYG7T7dcy9eqg34GZm1TcDWsZoXiUZLbBmuDNCFc9isYTQgaZIMX3dmwgft7uHeZbXV5Uk9-999heoWwM1KU6pL3mLi/w640-h360/lc-truce.png" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>Before you become alarmed with my use of the "S" word, I am managing my mental health and in the best (poor choice of words) place I've been in terms of accepting my situation.</p><p>This is all a long way of saying, people are realizing they quite possibly will be disabled the rest of their lives with many getting worse. This is a tough pill to swallow and (and I've swallowed a lot of them over my Long Covid journey) is that people are on the brink and starting to lash out and act a bit out of character.</p><p>My run blog turned Long Covid recovery blog and related social (<a href="https://www.tiktok.com/@seekingbostonmarathon?lang=en">TikTok</a>, <a href="https://twitter.com/seeksboston26mi">Xwitter</a>, <a href="https://www.instagram.com/seekingbostonmarathon/">Insta</a>, <a href="https://www.youtube.com/@seekingboston">YouTube</a>) over time has found some solace and solidary in the Long Covid Community. I have made many good online friends as a result, but it is now becoming more and more divided and frayed. The "community" has been a source of group therapy in a sense (much cheaper as I often point out,) and for me, advocacy. </p><p>Taking it a step further, I have my "sophomoric" humor (at least I try to be funny and provide some levity in a very dire situation) with my "Man in the Robe Productions" Long Covid digital shorts which often <a href="https://twitter.com/seeksboston26mi/status/1629135842232143873">take jabs at what I felt was the common enemy; Vinay Prasad</a> (aka "The Angry Conspiracy Bear,") Steve (aka Harry Balsach) Kirsch in one of my favorites, "<a href="https://twitter.com/seeksboston26mi/status/1646999309454561280">Long Covid Jeopardy</a>" and the like.</p><p>Along the way there has been at least one high profile "grifter" that 90% of the community reviled as she seemed more into flying first class and shining a light on herself versus her stated mission to help the community. Her organization has since been dissolved.</p><p>There are a few "wolves in sheep's clothing" that enter Twitter (X) spaces then "sucker punch" with a tweet or quick jab in a space. Along the way, I have blocked my share but only two people with Long Covid that I can think of. One (featured in both <a href="https://twitter.com/seeksboston26mi/status/1646999309454561280">Long Covid Jeopardy </a>and in my latest Long Covid <a href="https://twitter.com/seeksboston26mi/status/1694024006188568821">Mean Tweets</a>) who put out a manifesto of everyone he despised in the Long Covid Community with a few personal attacks including calling me a "creepy looking dude." Fair point.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAqm5swEnxIQLxJ-JzgdnkJtP7Gh6Yh0US7iImYaKU9tz5HU1iyIfhX0yPTEKnxDXusPcP7ZzkqMa2pu6a1IL3tmhVsBTNPmvGn97peCFqa8R7lRhhv6aZejvF4tNTCWntJFUZifrqv0jbyKlHiONa6tm19SzLwGJ09rOh7EosjSoG4ftubzcMDW1axNMC/s2100/villians-of-long-covid.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2100" data-original-width="2100" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAqm5swEnxIQLxJ-JzgdnkJtP7Gh6Yh0US7iImYaKU9tz5HU1iyIfhX0yPTEKnxDXusPcP7ZzkqMa2pu6a1IL3tmhVsBTNPmvGn97peCFqa8R7lRhhv6aZejvF4tNTCWntJFUZifrqv0jbyKlHiONa6tm19SzLwGJ09rOh7EosjSoG4ftubzcMDW1axNMC/w640-h640/villians-of-long-covid.jpg" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>The second "block" is a frequent lounge participant and had previously told me to "fuck off" in so many words, but more recently told me to "enjoy your brain bleeds" as I'd started (somewhat controversial or certainly still in research mode) <a href="https://www.youtube.com/watch?v=6ttQz7okfKg">triple therapy</a> for blood clots. Shocking to hear this from someone with Long Covid to wish this upon me. </p><p>I should point out AGAIN that I do not give out medical advise as I am a former art major turned to business major; not a neurologist, epidemiologist, and any doctor for that matter. I am OKAY with the community stating opinions about studies or treatment in general but I think that doling out personal medical opinions especially without asking is simply not cool. Most of these people and opinions are NOT in the medical profession so kindly keep your doctor conversations between you and your doctor.</p><p>Short of being defensive, I have tried practically everything; Ketotifen, anti-virals, tons of expensive vitamins I've peed down the toilet, prolonged Paxlovid, and low-dose Naltrexone to name a few. I have been open about my journey and felt this might be helpful (again short of giving out or endorsing any medical treatments) to others. </p><p>If anything I am getting worse, not better, so if I want to try triple therapy (three different blood thinners) and assume that risk, then that's my choice. I am doing it under a doctor's supervision at <a href="https://rthm.com/">RTHM </a>(aforementioned "blocked" friend also railed on them as grifters--which I take exception to.) I am frequently testing for any possible side effects, but then again, that's my business but I guess shame on me for sharing my experiences on twitter. BTW--I have tested for and my doctors have found clotting so it's my business to treat that. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDjzLjHagEQeyQxzzJk_uEi1Yw6eEXTHU3gO-cPgW67ejwZRATzKqoEepiepsUjYlvz3ryYBXbkUYTUe71Zfg9rYTmln9BAhp2tbLPnLYHkzw3fkKiqVfo7VXJfeZnlYlbIsNOdZBsHsiE7g2jqMBaBSLmn5c9gwkQGAzFdrIxuMAcnKbOlhSXE0D7fjqb/s1150/ty-microclots.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1138" data-original-width="1150" height="396" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDjzLjHagEQeyQxzzJk_uEi1Yw6eEXTHU3gO-cPgW67ejwZRATzKqoEepiepsUjYlvz3ryYBXbkUYTUe71Zfg9rYTmln9BAhp2tbLPnLYHkzw3fkKiqVfo7VXJfeZnlYlbIsNOdZBsHsiE7g2jqMBaBSLmn5c9gwkQGAzFdrIxuMAcnKbOlhSXE0D7fjqb/w400-h396/ty-microclots.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i>My "microclots" test results</i></span></td></tr></tbody></table><br />Same person has attacked the integrity of distinguished Professor <a href="https://twitter.com/resiapretorius">Resia Pretorius </a>and <a href="https://twitter.com/dbkell">Professor Doug Kell</a>--both prominent names in the Long Covid community doing research around microclots.<p></p><p>DISCLAIMER: I am not saying anyone should consider "triple therapy" without consulting with their doctor. I don't view microclots as a panacea for treatment of Long Covid, BUT, if I can't breathe and my lung and heart images are fine then what else could explain dyspnea?</p><p>The second area of "divide" among the community I've seen is "lashing out" at doctors, professors, and the research community working on finding solutions to the puzzle that's Long Covid. I recently came out with a DC Comic's inspired Villains and Super Heroes of Long Covid. The first list was universally praised with some mentioned above (like "Angry Bear" Joe Rogan, and Kevin Bass.) The later created controversary as many with Long Covid attacked my list as being "grifters."</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBkCRqhmb5vxsXeOlg51DpfmzV7rOakBa98tmzzyE6psPfnLeas2qXbv4AQ75q_9MtVX_vGOBxe_qIVsv6SO78DGHRAs6R_dju6qZFpTyCdNbirrWJYTDmCkkLBT8lb_iEEzr-DrGnJgd_X4HTfQ3z6fTc5kvlYO8YVQlREDP854zNA_hKd4zz1vIHswOo/s2100/heroes-of-long-covid.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2100" data-original-width="2100" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBkCRqhmb5vxsXeOlg51DpfmzV7rOakBa98tmzzyE6psPfnLeas2qXbv4AQ75q_9MtVX_vGOBxe_qIVsv6SO78DGHRAs6R_dju6qZFpTyCdNbirrWJYTDmCkkLBT8lb_iEEzr-DrGnJgd_X4HTfQ3z6fTc5kvlYO8YVQlREDP854zNA_hKd4zz1vIHswOo/w640-h640/heroes-of-long-covid.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div>Some of the Villains on my list (like current CDC Director Mandy Cohen) you might find "odd" given their stated position, but as I shared in a lounge yesterday, it's become harder and harder to discern between the "good guys" and the "bad guys" much like Star Wars where the stormtroopers working for Darth Vadar actually wear white. In the case of Mandy "the minimizer" she seems to lack the words "Long Covid" in her vocabulary and still thinks washing hands is protection against a potentially crippling virus.<p></p><p>I've seen (one of the above, or actually both my "blocked" Long Covidians) attack some of these "heroes" personally online. Names like Kell and Resia Pretorius who I think highly of were virtually "dissed" as being of the same ilk as the woman "banished from Long Covid Island" for posting her expensive rugs. I get it, it's America (for some of us) and everyone has a right to an opinion, but it seems that most all of the experts draw distain sometimes simply for word choice in a tweet.</p><p>Help me understand or "show me the receipts" where they are somehow diabolical or have some nefarious intent other than to solve this mystery of Long Covid and HELP us. I stand by both lists of Villains and Super Heroes.</p><p>My list of "Heroes" is not "gospel" and everyone has a right to an opinion, but it does say something that most everyone agreed with the villain list but many of the heroes were called into question. Everyone is entitled to their point of view but I think we've veered off course if we're attacking the very people trying to help us.</p><p>The latest (very much related) "divide" in the community is the biomarker paper (<a href="https://www.nature.com/articles/s41586-023-06651-y">Nature Med</a>) authored in part by (two of my Super Heroes,) <a href="https://twitter.com/VirusesImmunity">Prof. Akiko Iwasaki </a>and <a href="https://twitter.com/PutrinoLab/status/1707410916487094499">David Putrino of Putrino Labs</a>; "Distinguishing Features of Long Covid Identified Through Immune Profiling." </p><p>The negative backlash was twofold; 1) people were saying, "I've been saying this since 2020!" and 2) it's a bit like the RECOVER <a href="https://www.cnbc.com/2023/05/25/long-covid-scientists-propose-definition-based-on-key-symptoms.html">scorecard </a>that was universally panned. There are patients who don't quite fit some of the paper's findings; notably, low cortisol and EBV (Epstein Barr Virus) markers. Short of contradicting myself and stating medical opinion from a former art major, the one thing I've found is that there are many commonalities among people suffering from Long Covid but there are also many differences. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicxE8rNJ8DIbgiIEIU_gkt2zjWrgEcCSjg6AqQ3-_fUIhS9CWU4emhLs8vqMu1Rn4CKhWU7WD1gUrbOhTfZ8ReWG7oMLWQMO6rjASv_1lZSwIvOAtOJTg06KUA54e2-nFNrOo6u4HT_4hejzeuU22oqb9-kUg4rt7Zt_Ir_ZnX4THC_YomHcwGx8f3DKtd/s1920/pandemic-dogs-sbm.png" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicxE8rNJ8DIbgiIEIU_gkt2zjWrgEcCSjg6AqQ3-_fUIhS9CWU4emhLs8vqMu1Rn4CKhWU7WD1gUrbOhTfZ8ReWG7oMLWQMO6rjASv_1lZSwIvOAtOJTg06KUA54e2-nFNrOo6u4HT_4hejzeuU22oqb9-kUg4rt7Zt_Ir_ZnX4THC_YomHcwGx8f3DKtd/w640-h360/pandemic-dogs-sbm.png" width="640" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i>Some adversaries of the Long Covid Community in prominent roles not exactly our allies</i></span></td></tr></tbody></table><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br />Ironically, as I went to link to Putrino's Xwitter profile, I see that he's posted a response yesterday (<a href="https://twitter.com/PutrinoLab/status/1707410916487094499">HERE</a>,) to the negative response he's encountered as a result of the paper and all the negative press it's received. </p><p>Once again, I'm scratching my head. Yes, it's frustrating as hell to still be at the "identification phase" of Long Covid versus the treatment and solution phase. I had three different people reach out to me and tell me about the article including my friend Tom Costello, NBC News Correspondent (who's covered my story.) The way I look at it is that mainstream media picked up the story and it had great traction shining a much-needed light on a colossal issue. Yes, seems there are areas to pick apart--like the total population affected by Long Covid, but it seems we're arming ourselves to quickly attack anyone trying to help.</p><p>Perhaps NOT ironic, the "Angry Bear" (Vinay Prasad,) Beth Hoeg and perplexing UCSF published the steaming pile of sewage this week titled, "Statistical and Numerical Errors Made by the US Centers for Disease Control and Prevention During the COVID-19 Pandemic." The article gaslights, and cherry-picks snips of data with more than a tinge of "dirty" money influence--specifically conservative PAC money (<a href="https://twitter.com/emily_rj/status/1440936029725286400?s=20">Arnold Ventures</a>.) I won't link to their "steaming pile of (poo emoji)" paper. </p><p>UCSF is perplexing in that they allow the Angry Bear to completely ignore his Hippocratic oath and actually mock the Long Covid disabled community yet have a <a href="https://www.sfchronicle.com/health/article/long-covid-infusions-18378584.php">study </a>that's showing some promise. In other words, even more confusing that there are white hats amongst the black hats.</p><p>Part of my point is that the "Angry Bear" and other gaslighting and minimizing "press" gets far more clicks and traction than a well-researched fact-based medical journal and the accompanied mainstream coverage so shedding MORE light on Long Covid is a "good thing."</p><p>As I was flying home from Boston after a Long Covid brain study, I got into a "healthy" debate with a fellow LC sufferer over a doctor's use of the word of "post viral." We went back and forth a bit in a healthy manner and I reached out to her via DM to try and understand her perspective which was the HIV community would be in an uproar over the use of the word "post viral."</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmABKYV1y72CmvNVfcBetwedSQJ-bBLPvJpio-y1Ns_cuJkCmmIiyp7thltfgNpxnFHt0dUYSvnNI2jY3fI2mygv9eRff5iWSCX2I0W0MhzC-3ufwaEOMkTDZ10fnXm4m2Fn3WNhLxRxSTP0-2vciIvXCQVZMBdrNXvTxJ5cCdekaZX8vU7Fq_-waZbgi/s1080/sick-and-tired.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmABKYV1y72CmvNVfcBetwedSQJ-bBLPvJpio-y1Ns_cuJkCmmIiyp7thltfgNpxnFHt0dUYSvnNI2jY3fI2mygv9eRff5iWSCX2I0W0MhzC-3ufwaEOMkTDZ10fnXm4m2Fn3WNhLxRxSTP0-2vciIvXCQVZMBdrNXvTxJ5cCdekaZX8vU7Fq_-waZbgi/w640-h640/sick-and-tired.jpg" width="640" /></a></div><br /><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>My point to her was that dating back to 2020 at <a href="https://www.nationaljewish.org/home">National Jewish Health</a> and 2021 at <a href="https://www.mayoclinic.org/">Mayo Clinic</a>, doctors would describe the multi-system chaos in my body as a post-viral illness. I didn't take exception to that language then or now. The metaphorically speaking (once in a 100 year "super" virus) Covid-19 tornado "left town" but the aftermath has created several severe ongoing issues. We had a civil exchange and hopefully both understood our respective points. This is how such conversations should go. In the end, we may agree to disagree but we are both suffering.<div><br /></div><div>Another case where semantics gets us in trouble.<br /><p></p><p>The last "leg of the stool" is the feverish divide between the Long Covid community and the ME/CFS community. This one I get to a degree as many with ME/CFS have suffered for decades and along comes Long Covid and it is a headline story. Where the divide begins is (in part) for the ME/CFS community wanting to rename or rebrand under one name.</p><p>In my opinion (not that this entire piece hasn't been) is that there can be overlap, but there are also unique differences so I don't care for the single "brand name." I also have found some commonality and solidarity with those with ME/CFS and have been on more than a few legislative calls trying to raise awareness for related legislature trying to help the disabled community. We can disagree on the brand, but we don't need a "war" with the ME/CFS community.</p><p>The "blocking" of fellow "Long Covidians" has increased in frequency and perplexity as has the number of "self-imposed" breaks from the toxicity of Twitter--myself included. </p><p>I'll use one last confusing example that I shared in Dave's lounge yesterday and that is (on my Hero list) <a href="https://www.tiktok.com/@weselymd">Dr. Wes Ely.</a> I became a "fan of his when I saw one of his TikTok videos that I've shared before (and I'll paraphrase) as he described the damage that our brains are having, we don't have answers yet, but people with Long Covid need to be heard and shown some compassion. Yes, I've seen him get roasted for "word choice" and he seems to have fallen into the questionable hero status. Broken record--I don't understand this.</p><p>To try and wrap this up, I get it. Whether you have been sick for approaching four years or one year, we are sick and tired of being sick and tired, but we are stronger as one than we are arguing amongst ourselves for a common goal and that's to find answers from people trying to help, and treatment to get some sliver of our lives back. </p><p>Thanks for listening. I'd welcome your comments here or on <a href="https://twitter.com/seeksboston26mi">Twitter</a>. </p><p><br /></p></div>
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</div>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com3tag:blogger.com,1999:blog-8476235401101578979.post-41438122031616157952023-08-28T11:17:00.003-07:002023-08-28T12:59:46.029-07:00Slate Long Covid Hate<p>What is it with Slate and their minimization and downright dismissal of Long Covid? If I didn't know any better, there has to be a similar "yarn on the corkboard" connection to PAC money or the likes of Jeffrey <a href="https://www.youtube.com/watch?v=TDg0m2Q3H8c">Tucker's Brownstone institute</a>. The later explains the money-fueled bias of Vinay Prasad (aka the "<a href="https://twitter.com/seeksboston26mi/status/1629135842232143873">Angry Conspiracy Bear.</a>")</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKmZe2_Vwswcz2--rrrrE6KfcSKy_HKkOCur_4MtpNlXMiWq9THC5uke7hituAOjHmoMLSpFJYUJVRz3O7P0_lFbzOZmQpSUWXIIa44VBHc0pSiGxi6UvROPGM0RfSit-d5VzJVfnLUZr7q_yCNrzI214KRtdcIhG7sgfWGK7lnyzUH3kUdh6LDflJ5PYX/s1200/CREEPY-CLOWN.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKmZe2_Vwswcz2--rrrrE6KfcSKy_HKkOCur_4MtpNlXMiWq9THC5uke7hituAOjHmoMLSpFJYUJVRz3O7P0_lFbzOZmQpSUWXIIa44VBHc0pSiGxi6UvROPGM0RfSit-d5VzJVfnLUZr7q_yCNrzI214KRtdcIhG7sgfWGK7lnyzUH3kUdh6LDflJ5PYX/s320/CREEPY-CLOWN.jpg" width="320" /></a></div><br />It certainly can't be that they (Slate) has it right and the lion's share of the medical and research community has it wrong. At this point, there's a pattern of gaslighting at Slate; first with the "hack" aviation (using the term lightly) journalist Jeff (not) Wise. I say hack as he is known for writing about aviation and more famously (or infamously) featured in the Netflix documentary on the missing Malaysia flight 370 "<a href="https://www.youtube.com/watch?v=TDg0m2Q3H8c">MH370: The Plane That Disappeared</a>."<p></p><p>Several theories emerged and by the end of the documentary, other (seemingly more reputable experts) dismissed Jeff's stories as tin-foil induced drama which made him the perfect candidate to be an expert author on epidemiology (sarcasm) in the the article "<a href="https://slate.com/technology/2023/03/long-covid-symptoms-studies-research-variant.html">Long Covid Comes Into the Light</a>." Don't waste your time as there's lots of yarn and tinfoil in this gaslighting of Long Covid.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmR-Y_6btp7DodqIUnkYL9HyiZ5RM2WhtgbecqiarheLygJl4EAUsuBH_TanuuGfm9n8nCZBzJxGPMq14cSKmD1QlDBeSYfkSMAszR87hG7e55x0GrirXifJtwvf_Fc6VkQMyLu8teqEBUU4MkvtVZ2IIG82XEjxRWFB-RFXVIWzR2cKPbGOSvRCAoogzR/s1705/not-wise-disability.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1018" data-original-width="1705" height="382" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmR-Y_6btp7DodqIUnkYL9HyiZ5RM2WhtgbecqiarheLygJl4EAUsuBH_TanuuGfm9n8nCZBzJxGPMq14cSKmD1QlDBeSYfkSMAszR87hG7e55x0GrirXifJtwvf_Fc6VkQMyLu8teqEBUU4MkvtVZ2IIG82XEjxRWFB-RFXVIWzR2cKPbGOSvRCAoogzR/w640-h382/not-wise-disability.jpg" width="640" /></a></div><br /><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>I guess gaslighting pays as it seems articles like the above and the latest are better "clickbait" thus advertising dollars than the truth. I actually had a "blog in a twitter thread" breakdown of this garbage (<a href="https://twitter.com/seeksboston26mi/status/1637907471120605184">HERE</a>.) but suffice it to say, there's a lot of conclusions he draws (as a non-expert) such as "chronic comorbidities (implies ya have to be sick to get sick) might be experiencing the onset of new symptoms...others might be affected by the sorts of mood disorders and psychiatric symptoms you'd expect to find in a population undergoing the stress of a global pandemic.</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9UaJHZJ2LbGlGL2KUcuDkQmRdUNNGUH2eFZ9krSMldqxCmfCVU-INq00HRSLsyK3F3BmK_Vul0JkkB2R40rHoQdIlVElNQQ6x9D1j0i-Q4pCpoN8PDiAafcpuR3mGE6Oe91EYkRXxsIDo0XipZQBPEzkfOwrLvUWgv-ov8TJuXiQTN0VWwTXvirowmO1Q/s1705/not-wise-gaslighting.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1018" data-original-width="1705" height="382" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9UaJHZJ2LbGlGL2KUcuDkQmRdUNNGUH2eFZ9krSMldqxCmfCVU-INq00HRSLsyK3F3BmK_Vul0JkkB2R40rHoQdIlVElNQQ6x9D1j0i-Q4pCpoN8PDiAafcpuR3mGE6Oe91EYkRXxsIDo0XipZQBPEzkfOwrLvUWgv-ov8TJuXiQTN0VWwTXvirowmO1Q/w640-h382/not-wise-gaslighting.jpg" width="640" /></a></div><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Such gaslighting joined Jeff Wise along with other notorious minimizers Vinay Prasad and Steve Kirsch in my <a href="https://www.youtube.com/watch?v=LEp0paQrWGU">Long Covid Jeopardy</a>. Yes, when you've lost your ability to run and your career becoming disabled from Long Covid, I'm more of an expert than Jeff and yes, I use humor as a coping mechanism, but it's far from funny (but I think <a href="https://twitter.com/seeksboston26mi/status/1646999309454561280">Long Covid Jeopardy </a>is.) </div><div><br /></div><div>Back to pay for clicks, Vinay's YouTube (I won't link to it) tinfoil segments garner 100K views while mine had a paltry 382 clicks; but 40K impressions on Twitter. The "angry bear" makes even more money on his paid substack which is a common grifter platform for him and Harry Balsach (you'd have to watch Jeopardy to understand that one.)</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPuMmEjDF6uEUgqVSSLz4IRneIfcRkaMBTl4qGN1OtrDf0yvqFw--ozKK7Gv43y4pqF7CcBixpQydEj65EMuJ1N7X7l9CmgUQ3wcFTw1YqQ6aYlBNX1iDXtrs2NYEz0LVm_N6TNOPjCMI1ddv7uDYnTOEVhaOz6s4HrDu2FE6MS5T0RBRMC6E0hlvsqYUZ/s1920/slate-garbage.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPuMmEjDF6uEUgqVSSLz4IRneIfcRkaMBTl4qGN1OtrDf0yvqFw--ozKK7Gv43y4pqF7CcBixpQydEj65EMuJ1N7X7l9CmgUQ3wcFTw1YqQ6aYlBNX1iDXtrs2NYEz0LVm_N6TNOPjCMI1ddv7uDYnTOEVhaOz6s4HrDu2FE6MS5T0RBRMC6E0hlvsqYUZ/w225-h400/slate-garbage.jpg" width="225" /></a></div><br />Anyway, as usual, I've veered off the path. Slate Hate. Back to that.</div><div><br /></div><div>Just as the color returned to my face after being red-faced angry over the Wise piece, last week, Slate returned to "double down" with a piece surprisingly written by epidemiologist Gideon Meyerowitz-Katz who is an epidemiologist at the University of Wollongong. More like University of "load my bong."</div><div><br /></div><div>I repeated my "blog in a Twitter thread" when my <a href="https://twitter.com/MaryJoNabuurs">online friend (Mary Jo)</a> from "<a href="https://twitter.com/TheReSisters2">The ReSisters</a>" podcast dropped me a DM over the weekend asking if I'd read or had an opinion on the latest piece I hadn't seen yet from Slate. (BTW; My Podcast with them on YouTube <a href="https://www.youtube.com/watch?v=zNj5rzoQUAA">HERE</a>.) The article is based on a <a href="https://www.nature.com/articles/s41591-023-02521-2#MOESM2" target="_blank">Nature Med </a>article based on a Long Covid study that included work and expert opinion from Eric Topol and Ziyad Al-Aly. Shockingly, household names among the Long Covid community were not quoted or consulted from the hack piece by Slate. More yarn. </div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5FUVk-RyyawlvZqgGsNMHGCvlcixb14ivFYbuEroNVKtO5E2xJHbtus1Aqd595BfL32RmzBZMAxNDTSUN9RBhLVHArd1Cl-fRu0PAv23kDJEx3D5cj39YDUVEpRdWbWX1Uux3qhJJ937FbAQh1g-P0OyNvyd8mX5NJzr3IssJEiYT0ErKRwek13rrqyp/s1920/slate-garbage-4.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY5FUVk-RyyawlvZqgGsNMHGCvlcixb14ivFYbuEroNVKtO5E2xJHbtus1Aqd595BfL32RmzBZMAxNDTSUN9RBhLVHArd1Cl-fRu0PAv23kDJEx3D5cj39YDUVEpRdWbWX1Uux3qhJJ937FbAQh1g-P0OyNvyd8mX5NJzr3IssJEiYT0ErKRwek13rrqyp/w225-h400/slate-garbage-4.jpg" width="225" /></a></div></div><div>You'd be far better off reading the Nature Med link or a more credible news organization, like the Washington Post <a href="https://www.washingtonpost.com/health/2023/08/21/long-covid-lingering-effects-two-years-later/">article </a>that actually interviewed both <a href="https://twitter.com/EricTopol">Topol </a>and <a href="https://twitter.com/zalaly">Al-Aly</a>. </div><div><br /></div><div>You couldn't be further apart than the actually headlines. Slate's "<a href="https://slate.com/technology/2023/08/long-covid-nature-medicine-public-health.html">What the Actual Evidence Actually Says About Long Covid</a>"versus WaPo's "Many Long Covid Symptoms Linger Even After Two Years: New Study Shows" written by <a href="https://twitter.com/goldsteinamy">Amy Goldstein</a>. </div><div><br /></div><div>Did they read the same study?</div><div><br /></div><div>Meyerowitz-Katz (who dropped me from Twitter faster than the spread of Covid at a Taylor Swift concert) after my <a href="https://twitter.com/seeksboston26mi/status/1695552645094912426">weekend thread</a>) veers off on several inaccurate gaslighting conclusions such as “There are still tens of thousands of people likely disabled due to their coronavirus infections.”</div><div><br /></div><div>Ten's of thousands? You mean in Los Angeles county alone don't you? Sorry, sarcasm, but that number is way off. This is gaslighting and minimizing. Most estimates indicate 20+% of those that get Covid have long-term damage or Long Covid. This is MILLIONS of people. Not tens of thousands. "Non-hospitalized cohorts still displayed greater odds after two years of medical problems including organ systems."</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2KjPnYjP2GD_ng1xlXxbaVk4Z0ups4m1rfBZf8U_3--GNOxezJNU5YcEdo8gmaQsr-hifzNt5qcGlyhs8HCPdyPsDx3kRaPVA0XqHVtn2PBs3UkAFSNRlh5OqgjRSWVwVX_HDmGDSwqTZaXRNx9jdnkoCEVKHaDkuLa63bAsrRcFb2GOJmhyDmXZ_nDvQ/s1920/slate-garbage-3.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2KjPnYjP2GD_ng1xlXxbaVk4Z0ups4m1rfBZf8U_3--GNOxezJNU5YcEdo8gmaQsr-hifzNt5qcGlyhs8HCPdyPsDx3kRaPVA0XqHVtn2PBs3UkAFSNRlh5OqgjRSWVwVX_HDmGDSwqTZaXRNx9jdnkoCEVKHaDkuLa63bAsrRcFb2GOJmhyDmXZ_nDvQ/s320/slate-garbage-3.jpg" width="180" /></a></div><br />Yes, the study was based on a VA study so Meyerowitz-Katz draws confidence for those in the Long Covid community as this is the (drum roll,) comorbidities playbook--only those old or with pre-existing conditions are more susceptible to getting Long Covid ignoring the fact that there are kids getting sick and <a href="https://www.reddit.com/r/LongCovid/comments/160jjqf/long_covid_ruined_my_life/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=1&utm_term=9">young adults with Long Covid</a>. </div><div><br /></div><div>Which would explain why I was in the best shape of my life as a runner and triathlete and successful in the business world and now on Social Security Disability. </div><div><br /></div><div>He uses the word "immunity" from the playbook as well which gives the internet a false sense of security that "the really bad stuff" can't "happen to me" because "I've had it before or must have had it by now."</div><div><br /></div><div>Gideon writes, "I find the evidence quite reassuring." I get it. People are tired of talking about Covid, and want to move on to normalcy. Politics has killed Covid and Long Covid between the badminton played by Trump and now Biden to the point where Mandy "the minimizer" Cohen, CDC Director talks more about the common cold than Covid and doesn't seem to have Long Covid in her vocabulary. </div><div><br /></div><div>Articles like this don't help the needed reform and research investments needed for the millions--not tens of thousands of people suffering from Long Covid. <b>Shame on you Slate!</b></div><div><br /></div><div>The rest of my thread on twitter (<a href="https://twitter.com/seeksboston26mi/status/1695552645094912426">HERE</a>.)</div><div><br /></div><div><br /></div><div><br /></div><br /><div><br /></div>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-64139352207416776172023-05-31T08:34:00.002-07:002023-06-02T10:17:41.689-07:00The Dirty Dozen Symptoms of Long Covid<p>Good Lord. Where do I start?</p><p>There are two twitter storms within the Long Covid community stirring up quite a bit of dust; one being tensions boiling over with division starting to happen to what was a cohesive community and the second is the "bombshell" dropped by NIH defining Long Covid with twelve symptoms.</p><p>The later is one of the outcomes of the (not)RECOVER(ed) $1B initiative that has had "<a href="https://www.statnews.com/2023/04/20/long-covid-nih-billion/">little to show for it.</a>"</p><p>The former, I don't understand (and perhaps a future post) but the "dirty dozen" is a hot topic and I'm likely already in trouble by stating that NIH and JAMA narrowed down and simplified to a mere dozen symptoms as being inaccurate.</p><p>One side of that coin is there WAS a patient advocate as part of the study which we'd hope would reflect the community in terms of definitions and what those definitions would be used for. That's the start of the problem. <a href="https://twitter.com/LisaAMcCorkell">Lisa McCorkell</a> was that advocate and is one of the co-founders of <a href="https://twitter.com/patientled">Patient Led Research.</a> The Patient-Led Research Collaborative is a group of Long COVID patients who are also researchers born out of the <a href="https://www.wearebodypolitic.com/covid-19">Body Politic</a>. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwCC2JzfZ1WzZ7UsjN_wNlEi8WsvmccRpTY-4vNrTjiLIOxC_FTvRSiyzNJUtCW2NUPFdRHEt1dxuGzfhIohzCMoa5rvNMpF8RxoMWMMEIRx92H4Da1L_zaZm56Wba9OWypQB3-MIHXrlUN7zIOsdwbEjPnX_YgVO4p_A-_tJpYunwgfER8BTDcGPQhg/s2048/jama-dirty-dozen.png" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1082" data-original-width="2048" height="338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwCC2JzfZ1WzZ7UsjN_wNlEi8WsvmccRpTY-4vNrTjiLIOxC_FTvRSiyzNJUtCW2NUPFdRHEt1dxuGzfhIohzCMoa5rvNMpF8RxoMWMMEIRx92H4Da1L_zaZm56Wba9OWypQB3-MIHXrlUN7zIOsdwbEjPnX_YgVO4p_A-_tJpYunwgfER8BTDcGPQhg/w640-h338/jama-dirty-dozen.png" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br />Before I get in trouble for the second time in the third paragraph, let me state I don't know Lisa but can only imagine the amount of (thankless) work that participation would entail. Me personally, I wouldn't have enough "spoons" to dedicate to such an effort--its' far easier for me to make Jr. High level humor videos on my own time on Long Covid. <p></p><p>In no way am I diminishing Lisa's efforts; but quite the opposite of pointing out there was at least some patient input (aside from the 9000+ study participants) so bravo to her. </p><p>Why am I in trouble for stating "(they) narrowed down and simplified to a mere dozen symptoms?" If you dive into the paper and the countless threads on twitter, you'll find acknowledgement that there are over 200 symptoms of Long Covid (as Lisa <a href="https://twitter.com/LisaAMcCorkell/status/1662480026770755584?s=20">points out</a>;) yet they came up with twelve to determine a PASC (Post-acute sequalae Covid--clinical term for "Long Covid") score. The crazy part was the scoring system outlined in the JAMA paper states, "The optimal PASC score threshold used was 12 or greater." (see Figure 2.)</p><p>It's kind of like the SAT in high school, but in this case (at least the larger interpretation is) if you score below twelve, you don't get into the college you wanted but in this case, congrats, you DON'T have Long Covid. Don't shoot the messenger or in this case the brain-fogged blogger, that's how the broad universe (and media) is interpreting this paper. Each symptom has a weighted point system with loss of taste and smell being the highest with eight points. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5KqUNGX2u5_8XPxBEB5falsba9UZJ_9tof4d47pV_4Kzpea0ab8bClHFedDlfJNL0wSo01PFHFWhIv6LfXWFjzgFgpiRY_XSwi4c8AxAT-pkkPLS1Sej3LxuBWpRE5bxyYZHUVn7YOWQFp-2v_HPHXxpULGHqFYFy41o_6U-kb0xoNDJwKJhfFV2hbw/s1080/SeekingBostonMarathon-LC-Lightning.gif" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5KqUNGX2u5_8XPxBEB5falsba9UZJ_9tof4d47pV_4Kzpea0ab8bClHFedDlfJNL0wSo01PFHFWhIv6LfXWFjzgFgpiRY_XSwi4c8AxAT-pkkPLS1Sej3LxuBWpRE5bxyYZHUVn7YOWQFp-2v_HPHXxpULGHqFYFy41o_6U-kb0xoNDJwKJhfFV2hbw/w400-h400/SeekingBostonMarathon-LC-Lightning.gif" width="400" /></a></div><br />As an aside, I NEVER lost my sense of taste and smell; therefore no eight points for me. My "Spidey sense" and non-medical research opinion (based on my three years of Long Covid and interacting with hundreds of people with Long Covid) is that loss of taste and smell is a strong indicator of having Covid, but NOT EVERYONE loses these senses during onset of infection. <p></p><p>The JAMA paper shows a dendrogram indicating...I'm not entirely sure what it's indicating because I don't know what a dendrogram is; but shows of the 9764 participants scores a 100 in the n = 477 column. I have no idea what I just typed, but what I do know is that know very few who still haven't regained those senses. I'd say that universally the Long Covid community is baffled that it has such a high ranking vs (as an example) "it feels like the Alien from the movie of the same name is ready to burst out of my chest most nights."</p><p>I'm probably making the case for NOT sharing these type of papers with non-professionals, but I (like many of my Long Covid friends) seek guidance as we're trying to regain our lives and are hungry for answers. </p><p>As I state, I'm not qualified as a medical professional and have cognitive issues so I could be misinterpreting this wrong, but I'm not a alone as interpreting it (above) thus far. Where it starts to get worse is then how it's being reported in mainstream media. The <a href="https://www.cbsnews.com/news/long-covid-symptoms-nih-study/">CBS Headline </a>was "Long COVID is defined by these 12 symptoms, new study finds." Not twelve of 200, not over 200, but these twelve define Long Covid. </p><p>In the above mentioned CBS Article, Professor <a href="https://twitter.com/jlguest">Jodie Guest</a> from Emory Epidemiology is interviewed (in the accompanied video) and states that "tiredness and fatigue" is the number one symptom which I believe DOES resonate with the community...soooo, again, why is taste/smell ranked so high??? (Good interview with Professor Guest and a good follow, but her interview didn't seem to match CBS' interpretation or headline.)</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNo7KzM8kPRvKoSB5Chj4S038dKXXtY6Tg1iAHsKfwQzXuknDfjbY_RFW7-xm822yFxxFJ75ZF2ozy26S6zxgtHsu0XMx_MkBlaTmlMUoJlHkIXkAj46iREw2trptnu1JdiszOlLIT2zXEdhAadJkyGf8zvCFZTPOwbSeypp9kVeyM1VvJPOARRuQEQ/s1190/don-ford-hannah.png" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1190" data-original-width="816" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiNo7KzM8kPRvKoSB5Chj4S038dKXXtY6Tg1iAHsKfwQzXuknDfjbY_RFW7-xm822yFxxFJ75ZF2ozy26S6zxgtHsu0XMx_MkBlaTmlMUoJlHkIXkAj46iREw2trptnu1JdiszOlLIT2zXEdhAadJkyGf8zvCFZTPOwbSeypp9kVeyM1VvJPOARRuQEQ/w438-h640/don-ford-hannah.png" width="438" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Some of the "ugly" within the Long Covid Community jumping all <br />over <a href="https://twitter.com/ahandvanish">Hannah Davis </a></span></i></td></tr></tbody></table><br />As a hack (former high school) journalist, I have deep respect for credible journalists like <a href="https://twitter.com/tomcostellonbc">Tom Costello</a> from NBC News that's <a href="http://www.seekingbostonmarathon.com/2021/03/my-long-covid-story-on-today-show.html">covered my story</a> and more recently <a href="https://twitter.com/morganstephensa">Morgan Stephens</a> (<a href="https://www.cnn.com/2023/02/25/business/long-covid-workforce-issues-disability-claims/index.html">published in CNN</a>.) I have not held back for others like<a href="https://slate.com/technology/2023/03/long-covid-symptoms-studies-research-variant.html"> Jeff (not) Wise</a> and <a href="https://newrepublic.com/article/168965/might-long-covid-wrong">Natalie (not so) Shure </a>who either connect dots that aren't there, gaslight those with Long Covid or are simply not qualified (as I state I am) to interpret complex medical topics and papers.<p></p><p>Back to the "Dirty Dozen" I've had numerous friends whose score is below twelve and are furious and feeling dismissed. I scored an eighteen, but that doesn't mean "Jack diddly Dick." Does that make me "more sick" than others? No. </p><p>That's where this rat's nest really starts to unravel. Could Doctors, Hospitals, Long Covid Clinics, insurance companies, and Social Security Disability use this ranking system to determine whether or not you have Long Covid? I don't know, but it's conceivable when the community is "marked" with gaslighting, dismissal of our condition, and lacking ubiquitous definitive tests to identify PASC thus far.</p><p>Having said all that, I acknowledge that this is a complex topic and difficult to boil down over 9000 participants into a pretty little box of a dozen symptoms, but I feel they "missed the mark." I often answer the question of what are your symptoms and what is your day like to the analogy of a kaleidoscope (see Figure 2.) It's a wide blend of symptoms (prisms) that change over the course of a day, a month and in my case, over three years. </p><p>I hit many of the quadrants of the dendogram with neuropathy that still sends me to the ice tub most nights, PEM (post exertion malaise,) fatigue, chest pain and spasms, advancing cognitive issues, extreme dyspnea, vasculitis, preload insufficiency of the heart, broken immune system, and rife with inflammation (and I'm sure I'm missing a few of the "garden variety" Long Covid symptoms.)</p><p>Not on the list is cranial instability--common and now part of my new set of symptoms--I now have a diagnosis of cranial stenosis (see <a href="https://www.youtube.com/watch?v=yNi6Nf6cKYg">RTHM YouTube video </a>on Cranial Instability.) Double vision (only once for me,) weird rashes (what looks like according to my Google MD wife as Shingles) in the last week, swimming fingers (pruny fingers seen when spending time in the water,) losing fingernail "moons" and now tinnitus are relatively new for me but alas none are on the list.</p><p>But hey, I'm not a ten, I'm an eighteen so put that in your dendrogram.</p><p>UPDATE: The <a href="https://twitter.com/LongCovidAP">Long Covid Action Project </a>and Action Network has a template to send a letter to your (U.S.) political representatives asking to retract the paper (<a href="https://actionnetwork.org/letters/request-for-nih-to-retract-recover-study-regarding-12-symptom-pasc-score-for-long-covid/?source=twitter&">HERE</a>.)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://actionnetwork.org/letters/request-for-nih-to-retract-recover-study-regarding-12-symptom-pasc-score-for-long-covid/?source=twitter&" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1156" data-original-width="1279" height="578" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5-VxAUF7fRcgESkk5ADz8ZwjtN0nf4szGs0-oM9i8cxCsSEDSC8NnMgWqsVD1rsIOPXiunbLmDt-bPItMl0k4a2W5u8ctuSuX8nX9RSucVYjAsgecOHSaV-UjL3R13TaREJkaCELtnFFjeWdj2CQ_CZPDoan5AK7XMGSbijUKR8AJBm4DhnCvGZauzw/w640-h578/send-a-letter.png" width="640" /></a></div><br /><p><br /></p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com1tag:blogger.com,1999:blog-8476235401101578979.post-69730203050956208962023-04-03T12:28:00.002-07:002023-04-05T15:43:12.814-07:00The Art of Long Covid<p>UPDATED: April 2023. Continuing to add more recent work at the top. Chronological art further below as noted. </p><p>Mango Mussolini pretended Covid didn't exist. Joe Biden is now pretending it's over. Parody video based on George Romero's classic film, "Night (Day) of the Living Dead."</p><p>
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<p></p><p>One of my "pet peeve" terms around Long Covid, is brain fog. Medical journals are starting to label it in a more serious context. I call it brain damage.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSqBqNCgbWKDfixltx_aKHKP-PELNDAchdXUXewqu7GKibliszA4AVEVNDTLCSGp9AdTK9W_OT0zX6MloQhkkrtBSMStaDHP9l3gSqCqJQZpJ2dvdh-D-wtIBmM3YQyI_fAM2NUyNjpvFx7nznEh2bF4S4CpQIXg5JiXkfcVl7m4tImVWzrDHI2RGfaw/s1920/long-covid-brain-damage-SBM.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSqBqNCgbWKDfixltx_aKHKP-PELNDAchdXUXewqu7GKibliszA4AVEVNDTLCSGp9AdTK9W_OT0zX6MloQhkkrtBSMStaDHP9l3gSqCqJQZpJ2dvdh-D-wtIBmM3YQyI_fAM2NUyNjpvFx7nznEh2bF4S4CpQIXg5JiXkfcVl7m4tImVWzrDHI2RGfaw/w225-h400/long-covid-brain-damage-SBM.jpg" width="225" /></a></div><div><br /></div>I use "parody" as a way of expression and parody of sorts. The third in my series of "Long Covid Mean Tweets" showing a spotlight on those gaslighting and railing on those disabled with Long Covid or trying to protect themselves from Covid.<div><br /></div><div><p style="text-align: center;">
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</p><p><br /></p><p>As President Biden has declared the pandemic is "over," we're seeing more and more commercials minimize the effects of Covid and Long Covid. There's the television ad with Pink, and Michael Phelps, but the worst idea an intern ever turned into garbage was the <a href="https://www.youtube.com/watch?v=xpFwZYQqDkk">California Department of Public Health sing-a-long </a>(seriously? people are dying and getting disabled and we're singing about it???) video. My alternate video of what they really should have produced below.</p><p>
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</p><p style="text-align: left;">My second Long Covid "mean tweets video based on Jimmy Kimmel's celebrity mean tweets--in this case, people gaslighting and being downright nasty towards those suffering from Long Covid. </p><p style="text-align: left;"></p><p style="text-align: center;">
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</p>A common "victim" of my parody videos is the worst gaslighting (not really) medical professional, Vinay Prasad. I depicted Vinay and Natalie Shure who wrote the epic gaslighting article "<a href="https://newrepublic.com/article/168965/might-long-covid-wrong">We Might Have it All Wrong</a>" in The New Republic rag. She failed to interview any notable names in the Long Covid medical community and suggested it was FND (functional neurological disorder.) She might want to check herself for disorders. <p></p><p style="text-align: left;"><a href="https://twitter.com/JoshuaPribanic">Joshua Pribanic</a> and the Public Herald put together a masterful rebuttal with over 200 professionals tearing apart her trash piece. A great read <a href="https://publicherald.org/the-new-republic-has-long-covid-all-wrong/">HERE</a>.</p><p style="text-align: left;">Natalie and Vinay are often on the receiving end of my ire covered in <a href="http://www.seekingbostonmarathon.com/2023/02/vinay-conspiracy-bear.html">THIS POST</a> including the illustration below and one of my biggest pride and joy pieces, "Vinay the Angry Conspiracy Bear" video.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPmYhMjaW_Iqz6H_wGenVoWPdZjL9klZWRnf9Id-CdVB8D9etluyoLjFDxN7T86AS76ltwG1KYoIZeuRoTUlvR2wAG0fiX-DL0P-t_PEuu2FV2FZhLHQEKiLXGdyev9cYvqLTlsuHNrAQjJpxSjydY_gBf8wje_LkuGCgSdOYcdc8TiHEVcFwm8A484Q/s1920/1677461670732482-0.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPmYhMjaW_Iqz6H_wGenVoWPdZjL9klZWRnf9Id-CdVB8D9etluyoLjFDxN7T86AS76ltwG1KYoIZeuRoTUlvR2wAG0fiX-DL0P-t_PEuu2FV2FZhLHQEKiLXGdyev9cYvqLTlsuHNrAQjJpxSjydY_gBf8wje_LkuGCgSdOYcdc8TiHEVcFwm8A484Q/w360-h640/1677461670732482-0.png" width="360" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='528' src='https://www.blogger.com/video.g?token=AD6v5dzsqAFtXLweNG8uNJhCbHvFywu5MVaj5f14u29_haydbNx70eHCcoMYusElZ81bZFQA5Q9u_lOQYPDDotXv7w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><p style="text-align: left;"><br /></p><p style="text-align: center;"><br /></p><p style="text-align: left;">And the original Long Covid Mean Tweets.</p><p style="text-align: left;"><br /></p><p style="text-align: center;">
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<br /></p><p>As 2022 came to an end, I put out a holiday video; a spoof based on the movie, Love Actually. Aptly named, "Long Covid Actually" putting my green screen at home to work.</p><p style="text-align: center;">
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<br /></p><p>When Long Covid comes to town, bad things happen (carnival background stock photo.) </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQfNpyMwxv2viA_9XH1Upf0AwfDO52MqJrkoDIT7Z9zUbwbfdxPlgQy7DiUQqmPfgD2Z1rHE61l-4wFzWGJG4vwcxKQiIv_tbtatwskLedgA3wl6yS4ltjT7iZVzM4Tr6m3Yo-nlB2y-8VNCm3KrKAMQkU8mm3IkDQnLhxWZCUqF0jmb6yad-qgvKsCg/s1080/SeekingBostonMarathon-LC-Lightning.gif" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQfNpyMwxv2viA_9XH1Upf0AwfDO52MqJrkoDIT7Z9zUbwbfdxPlgQy7DiUQqmPfgD2Z1rHE61l-4wFzWGJG4vwcxKQiIv_tbtatwskLedgA3wl6yS4ltjT7iZVzM4Tr6m3Yo-nlB2y-8VNCm3KrKAMQkU8mm3IkDQnLhxWZCUqF0jmb6yad-qgvKsCg/w640-h640/SeekingBostonMarathon-LC-Lightning.gif" width="640" /></a></div><br /><p><br /></p><p>As fears of Elon Musk completely melting down the servers at Twitter, I've got an escape strategy below to my <a href="https://zeroes.ca/@SeekingBostonMarathon">Mastodon Account.</a> </p><p><br /></p><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/cqM8nUESwLs" title="YouTube video player" width="560"></iframe></div>
<p></p><p>Prior to my Star Wars escape Pod, one of my #LongCovid peeps on Twitter suggested we lobby for the great Dolly Parton to share some of the $100M Jeff Bezos is purportedly giving her for charity. C'mon Dolly, can you help us out? #DollyHelpLongCovid</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi93ZuFp2CUal2QQqnJB5q7XQNZWE1zuKcRxlR8pnRqKg4fYmsE_nHGAVrlzlceGK6LeEuzUE7x1kZLA3otPlUXpKhOXa9dGDEUXqBdDv1ubAMviuM8qhxv7bD6G7Mif40wjhzp9NCRarZoKU54Ei65y654pwExwyLFSrCdlZS4Y9X1htq_pqQ4Vv8hUQ/s1920/Dolly-Big-Hair-SBM-Long-Covid.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi93ZuFp2CUal2QQqnJB5q7XQNZWE1zuKcRxlR8pnRqKg4fYmsE_nHGAVrlzlceGK6LeEuzUE7x1kZLA3otPlUXpKhOXa9dGDEUXqBdDv1ubAMviuM8qhxv7bD6G7Mif40wjhzp9NCRarZoKU54Ei65y654pwExwyLFSrCdlZS4Y9X1htq_pqQ4Vv8hUQ/w225-h400/Dolly-Big-Hair-SBM-Long-Covid.jpg" width="225" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p></p><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/NHu7uon8uV0" title="YouTube video player" width="560"></iframe></div>
<p>I must be feeling a '60s vibe of late as shown in my concert poster-style image below promoting "Long Covid Solidarity!"</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX1HFLJv6JAwdeNHnz37IfpyeNAy-HyXHrHLsFB7v5sCBVHaTNwvy8U_xYz9uS1s5Dw-QLvrll4N01FweiFYOuvRt7nZBnwWP_uaDOv6i_psX2zQaVfiplcik3hQA0of1qa8DBx0Vaa1F1C940UxLaJmu-ESzHnxuGAPziZCxSKpHc6EH7qHcPN85MNA/s1920/LC-solidarity-SBM.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX1HFLJv6JAwdeNHnz37IfpyeNAy-HyXHrHLsFB7v5sCBVHaTNwvy8U_xYz9uS1s5Dw-QLvrll4N01FweiFYOuvRt7nZBnwWP_uaDOv6i_psX2zQaVfiplcik3hQA0of1qa8DBx0Vaa1F1C940UxLaJmu-ESzHnxuGAPziZCxSKpHc6EH7qHcPN85MNA/w225-h400/LC-solidarity-SBM.png" width="225" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><b>ORIGINAL POST (OCT. '22)</b> I'd engaged in conversation recently with someone on <a href="https://twitter.com/seeksboston26mi">Twitter</a> and she asked if I did the accompanied drawing in a tweet. My normal retort is that the production department consults with the legal department then I approve here at Seeking Boston Marathon. Without sarcasm, I'm a "one-man-band" with Long Covid that writes and illustrates my journey. Part therapy, part advocacy. With that, much has happened over my 1001 day experience with Long Covid so I thought I'd share that journey through the art I've created over those 33 months.<p></p><p>My first drawing showed the "Elephant in the Room" as in early 2020 I had issues with breathing (as I was still trying to train for a half marathon in March '20) and doctors had no answers. News was just erupting over the deadly Covid-19 pandemic. </p><p>I recall watching the stories in January 2020 from my hotel room in Cape Town, South Africa where I'd coughed all night and woke up with sheets soaked from the chills from the night before. My Long Covid journey had just begun, but I had no idea what I had or what I was getting into.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHSOfnTHBh5UVLeRN9Udk71HDGqOQ63PF7gsNSigkrx9EnVfRKuCNMcvf931u08qc9XcMYnQdCs2YTv_tw4n9DF87YydbTJqXXVrY5pwKy1PCKdkhT8FfoahhpSFsmelHTkA6Hs__1q1uXFTDFGG5yEqJ_ctil4Yfjm0iHVOKhcw_iPVkzsJfYd4Iuaw/s1221/SBM-elephant.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1221" height="472" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHSOfnTHBh5UVLeRN9Udk71HDGqOQ63PF7gsNSigkrx9EnVfRKuCNMcvf931u08qc9XcMYnQdCs2YTv_tw4n9DF87YydbTJqXXVrY5pwKy1PCKdkhT8FfoahhpSFsmelHTkA6Hs__1q1uXFTDFGG5yEqJ_ctil4Yfjm0iHVOKhcw_iPVkzsJfYd4Iuaw/w640-h472/SBM-elephant.jpg" width="640" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>As the pandemic unfolded and everyone quarantined into their homes, there was a a nightly "howling" that hit the country at 8PM. I painted a "triptych" Beatles-themed painting in the front window of our home and I blasted "All you Need is Love" through my <a href="https://www.sonos.com/en-us/home">Sonos</a> speakers into the neighborhood. A subtle jab at the early mocking of the administration shows a Covid squid and a certain POTUS' name on the whale--both attacking the Yellow Submarine.</p><br /><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOGY0xqm7qj3vwbWPLyUwAqkTANqxSYEaEJVBJBzVYxJEYjZ0CJXN6bL9xoqHLEUhTr5-YjyVbTyp0Wpw92si1QCIgUvVSrQjVMTG54v2TV8zR2d6whJTwzFLNkLxyXBFaZp29XOMEOjBLtzoyf1twRQ7vvW09cVQ2kBqOkC0r4JvGiwEGMYUU5v3-Sg/s4032/20200421_193303.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1960" data-original-width="4032" height="312" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOGY0xqm7qj3vwbWPLyUwAqkTANqxSYEaEJVBJBzVYxJEYjZ0CJXN6bL9xoqHLEUhTr5-YjyVbTyp0Wpw92si1QCIgUvVSrQjVMTG54v2TV8zR2d6whJTwzFLNkLxyXBFaZp29XOMEOjBLtzoyf1twRQ7vvW09cVQ2kBqOkC0r4JvGiwEGMYUU5v3-Sg/w640-h312/20200421_193303.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: left;">As part of the quarantine life, also in 2020 I was sick but unsure of the nature of my illness as I started the first few of what would be close to 200 doctor appointments. Before my 100 day fever set in, I created a driveway mural as Denver's annual <a href="https://denverchalk.art/">Larimer Square chalk art festival</a> was cancelled but they encouraged people to create at home. I was sick but still uncertain what it was. I could not run at this point so perhaps it was a stubborn rebellion to create outdoors. I created a London street scene from our trip there in 2019.</div></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV17SKCOHLOrt3htmdktcNpM5c4wsJs3mkijg18tacQDsx-PXzmRqEC1RLZeuFYdovESzeH3_NjMUtUzqwXFntdnBmdfwfOiyTHm-gtEX78QZhmE9Elj736rzpr_72_fVbntLJOsYYTqY-BIpvXp6z5K1gJy_FGY14G8l8T-N-FKdlHxWPtHLMMVEnsg/s4032/20200607_155412.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2268" data-original-width="4032" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV17SKCOHLOrt3htmdktcNpM5c4wsJs3mkijg18tacQDsx-PXzmRqEC1RLZeuFYdovESzeH3_NjMUtUzqwXFntdnBmdfwfOiyTHm-gtEX78QZhmE9Elj736rzpr_72_fVbntLJOsYYTqY-BIpvXp6z5K1gJy_FGY14G8l8T-N-FKdlHxWPtHLMMVEnsg/w640-h360/20200607_155412.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">As my conditions became worse and running abruptly ended in March 2020, I took to my <a href="https://www.wacom.com/en-us">Wacom </a>tablet and redirected my energy into a digital painting of my Grandparents (Lela and Lyle) and Aunt and Uncle. Many thought this was merely applying a "paint filter" to a photograph. I created using 9+ pixel "wet brushes" with <a href="https://www.adobe.com/products/photoshop.html">Photoshop </a> to digitally recreate "Happy Hour on the Lanai." I presented to my mom who's since passed (<a href="https://youtu.be/OPr1LcJ31U0">HERE) </a>on Mother's Day 2020.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXpnEFUpu83u15J_3NRRX5DAnfER2OCG5-vqEBLvvVtuLk6TY_qkDSuCfyV46IkBLbDU4abQ8UgAXrDaxq-64LEGb_AD_Q3du7oo4RKzkuuJ27F5mtVpy6kuzPrgpJt9WrYRxl4QepeZ0NFDdr3TdReRXdUEdeAd-bk-ELlp-m-taBEDqbseQ97GVvWg/s2700/lela-lyle-ron-doty-final.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1775" data-original-width="2700" height="420" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXpnEFUpu83u15J_3NRRX5DAnfER2OCG5-vqEBLvvVtuLk6TY_qkDSuCfyV46IkBLbDU4abQ8UgAXrDaxq-64LEGb_AD_Q3du7oo4RKzkuuJ27F5mtVpy6kuzPrgpJt9WrYRxl4QepeZ0NFDdr3TdReRXdUEdeAd-bk-ELlp-m-taBEDqbseQ97GVvWg/w640-h420/lela-lyle-ron-doty-final.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">As you can imagine, the above took quite some time (approximately 80 hours) and have since not been able to take on a project of this magnitude. As I continued to write on these virtual pages, what was later diagnosed as small fiber polyneuropathy started on top of the shortness of breath that again abruptly ended my running life. "My Long Haul Nightmare" was featured on <a href="http://www.seekingbostonmarathon.com/2020/08/my-covid-19-long-haul-nightmare.html">NBC Nightly News</a> along with my story below. Aside from the "monster" itself, you can seek the capillary tentacles wrapping around my legs showing the madness that hasn't left my lower extremities and now numbs fingers and doctors speculate could be causing the nightly chest spasms. </div><div class="separator" style="clear: both; text-align: left;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yJ3WPPHQOErZFoQP287QPE_R8zAx_XnOUtILSTI2wNQ-ep3Cm1F4fw5aLO3rsZHBy8qykRN2j60NoBHQdLaSZt5ozHNKYm7dmdH20xMz6oi5Exhf6SXXrKDZyWggdBoPcSKd-iepcNL7izladnJVXbFTThrmz3-RLfPCjnAj9fpHnlTHIb2expfE8A/s1920/long-haul.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yJ3WPPHQOErZFoQP287QPE_R8zAx_XnOUtILSTI2wNQ-ep3Cm1F4fw5aLO3rsZHBy8qykRN2j60NoBHQdLaSZt5ozHNKYm7dmdH20xMz6oi5Exhf6SXXrKDZyWggdBoPcSKd-iepcNL7izladnJVXbFTThrmz3-RLfPCjnAj9fpHnlTHIb2expfE8A/w360-h640/long-haul.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Also shown above, my favorite <a href="https://www.hoka.com/en/us/">Hoka</a> run shoes and <a href="https://procompression.com/">Pro Compression </a>socks are set aside. The March '20 race with Liam was cancelled and I showed how much I missed running and Liam in the next gif illustration below. I no longer wear Pro Compression in races or to recover from them, but always have a pair in my nightstand for the more severe nights of neuropathy that prevents sleep. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqatAkNuS0YXhoZZTQXQemx_ESD_ZCs-ZwN0_RGf8CJizqLog2vsWRtDGdEzjH1CxeU7kskN_i9fPZskAu8vqgb3LudjXL1Jp8V3olVOGZlMBCPmmlZwn10dIhn8KrTC2PftWllnDKeHaWvjb1cAq7WzqBPKn44aEGHfnWZOKHURl8PheGIGDXc-jPzw/s1200/dream-liam-run.gif" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqatAkNuS0YXhoZZTQXQemx_ESD_ZCs-ZwN0_RGf8CJizqLog2vsWRtDGdEzjH1CxeU7kskN_i9fPZskAu8vqgb3LudjXL1Jp8V3olVOGZlMBCPmmlZwn10dIhn8KrTC2PftWllnDKeHaWvjb1cAq7WzqBPKn44aEGHfnWZOKHURl8PheGIGDXc-jPzw/w640-h640/dream-liam-run.gif" width="640" /></a></div><div class="separator" style="clear: both; text-align: left;">The above illustration also showed the self-isolation that we were still all subjected to. The next two illustrations showed how we were all practicing (or at least should have) "social distancing." Seems crazy to think back to restaurants closing and delivering food and reopened with outdoor dining and pod tents to try and bring back normalcy. </div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkaoCfI00Mv0EVOZc45cRF2rZHvxpIJ5BWV6tWyPwvOVGLOR1hU1yDxOGGxiiabG3tA91tpt7nrVqdevFar5lq6cNpwEmmZCsXvTTUJBe_hHe-G_fQEx_uSYFkr-64iU4Q1OQufIGH-6ZPvHd7ibmXEdlTTfnbHFsR9DVgffIc-flGgUpHmxxMAinfXA/s1863/runner-social-distancing.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1863" data-original-width="1863" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkaoCfI00Mv0EVOZc45cRF2rZHvxpIJ5BWV6tWyPwvOVGLOR1hU1yDxOGGxiiabG3tA91tpt7nrVqdevFar5lq6cNpwEmmZCsXvTTUJBe_hHe-G_fQEx_uSYFkr-64iU4Q1OQufIGH-6ZPvHd7ibmXEdlTTfnbHFsR9DVgffIc-flGgUpHmxxMAinfXA/w400-h400/runner-social-distancing.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Despite the "gaslighting" I got from a recent Dr. at a renowned hospital who wrote in my clinical summary that "Ty fancies himself as runner," (F-you by the way,) I was still trying to reach and relate to running with the body odor social distancing drawing and the "<a href="http://www.seekingbostonmarathon.com/2020/03/runners-social-distancing-bingo.html">Runner's Social Distancing Bingo</a>" post below including such gems as "Run Without a Snot Rocket."</div></div></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: left;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3q7MYvQhJeL8Oz0ywqgUluNRsfkP_VD3LiUGA6GUL-_PZeNhR9Zv6ucgK2-UCIULhFhN2tWsE18eS3iohmlkuOIb9tYjTV4FmNffiKiiOKjMIVLSAtsZrgiBr1LqqYKDbEKjF7NiVDDTLDpdtEiuMQRk9hdejdKqKzqnZ5FGrBJ9i-tRAX-rIwfmmYA/s2100/runner-social-distance-bingo-v4.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2100" data-original-width="2100" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3q7MYvQhJeL8Oz0ywqgUluNRsfkP_VD3LiUGA6GUL-_PZeNhR9Zv6ucgK2-UCIULhFhN2tWsE18eS3iohmlkuOIb9tYjTV4FmNffiKiiOKjMIVLSAtsZrgiBr1LqqYKDbEKjF7NiVDDTLDpdtEiuMQRk9hdejdKqKzqnZ5FGrBJ9i-tRAX-rIwfmmYA/w400-h400/runner-social-distance-bingo-v4.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">As 2020 started to come to a close and the 100 day fever ended, I depicted the "fire" inside my body that included the chest burning that has never gone away in the dark image below. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvlUMKpda-zFn5Xqdyxmyn9CMi-A8uSlZZeA_7C_qCZLZ-6QRrR6K_mKVKlkM5eGjpOfZ0X8EtjKztBlkuN6Ldoao3zf-iTcs6Xi2Ku8t9wLZdg8ajx2B4930lsK-zQooXUsxVQKZzQQ1rfAZvccLFBCqT0DiSMEk58q2pJ9SKMLSvNlNcy0m7Jzoyog/s2048/covid-truck-stop-FINAL.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1152" data-original-width="2048" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvlUMKpda-zFn5Xqdyxmyn9CMi-A8uSlZZeA_7C_qCZLZ-6QRrR6K_mKVKlkM5eGjpOfZ0X8EtjKztBlkuN6Ldoao3zf-iTcs6Xi2Ku8t9wLZdg8ajx2B4930lsK-zQooXUsxVQKZzQQ1rfAZvccLFBCqT0DiSMEk58q2pJ9SKMLSvNlNcy0m7Jzoyog/w640-h360/covid-truck-stop-FINAL.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">My last illustration from 2020 showed the metaphor of Covid leaving town but leaving a swath of destruction behind being Long Covid. As the tornado swirled lifting cattle, cars and toilets into the air, once again someone's red tie was twisting around a tree as I sat in agony in my chair. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5qeftMC7tM7xiFb90KYKy8hiX01bc6b3B3dAfHdfpTnPiqCAbwjQpVYq6a_ObNzrHK4h65vnBtqN8Kl_5lLOHAdvYQn9d-4g_yAze5sXxrbG2vPEsqruIJAQWMRrwDF6VsR2LRe7cVzihDp15ZUNmQtUeU4ulPVGQffXiGAqyo6TDXdkPqXYXvcfm_g/s1920/rona.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5qeftMC7tM7xiFb90KYKy8hiX01bc6b3B3dAfHdfpTnPiqCAbwjQpVYq6a_ObNzrHK4h65vnBtqN8Kl_5lLOHAdvYQn9d-4g_yAze5sXxrbG2vPEsqruIJAQWMRrwDF6VsR2LRe7cVzihDp15ZUNmQtUeU4ulPVGQffXiGAqyo6TDXdkPqXYXvcfm_g/w640-h360/rona.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">As we left 2020, my medical journey continued with <a href="https://www.nationaljewish.org/home">National Jewish Health</a> in Denver who eliminated earlier notions of asthma and all heart and lung (pre-2020) issues. Dr. Goldstein referred me to Mayo Clinic in Rochester, MN. <a href="https://www.mayoclinic.org/biographies/vanichkachorn-greg-m-d-m-p-h/bio-20470118">Dr. Greg Vanichkachorn</a> (Mayo's lead "Long Covid" doctor) finally diagnosed me as being a Covid "long hauler "and was featured on the <a href="http://www.seekingbostonmarathon.com/2021/03/road-to-healing.html">Today Show</a>. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Growing up on Dr. Seuss, my next whimsical illustration was a play on words with his "<a href="https://www.amazon.com/Think-That-Saw-Mulberry-Street/dp/0394844947">And to Think That I Saw It on Mulberry Street</a>" but of course mine was on home Dexter Street. Another subtle political tone was Dr. Birks stuck in a tree with a sign saying, "Don't drink bleach." We all remember that cringe-worthy presser. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7ZIh1EMsV7FTPXPzjf5L3xFRNWiwQBnUakBr4PDQKXpRoHN2o3ynF_1QHUbtUvOy2Jf73MJ78V0E1Hoo9cFbwO7XGQvHInpJMEi4PVV1i0o0EXUVrFcSEK67AEMns1brgaAX1M06SMAVzIPWK4T-_chRFCD2bUhizN6UU2eygAks5DScKhCzkkb3pzQ/s1920/seuss-book.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7ZIh1EMsV7FTPXPzjf5L3xFRNWiwQBnUakBr4PDQKXpRoHN2o3ynF_1QHUbtUvOy2Jf73MJ78V0E1Hoo9cFbwO7XGQvHInpJMEi4PVV1i0o0EXUVrFcSEK67AEMns1brgaAX1M06SMAVzIPWK4T-_chRFCD2bUhizN6UU2eygAks5DScKhCzkkb3pzQ/w360-h640/seuss-book.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">You can see a return of my famous gray robe in the Dexter Street illustration which I've since lost. A byproduct of "brain fog" (I more accurately call brain damage.) How does somebody lose a robe? I often draw inspiration from classic film and the drawing below features Violet Beauregarde from Willy Wonka. The famous gum scene that changes flavors ending on the doomed blueberry pie symbolizes the way symptoms drift from one to another within a day or a week or in combination to create the debilitating condition of Long Covid. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHH9CxSTstU2tpH9ikve0chwjpc5gSTdwTdi2zhopQWJu1jLQ1uEgJT8SO0tYKwbLe8HQUpI9UW5mIgsoSS0hWWFGdxWb_6_BG2EhaOlOoRNC32E48ce2FusS4NXxTd2rnqIE8ew0scVbni2_T-osWkl74JCet-oF6p_SPOohlU94J9oZQav3rRUHivw/s1920/violet-long-covid-gum-v2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHH9CxSTstU2tpH9ikve0chwjpc5gSTdwTdi2zhopQWJu1jLQ1uEgJT8SO0tYKwbLe8HQUpI9UW5mIgsoSS0hWWFGdxWb_6_BG2EhaOlOoRNC32E48ce2FusS4NXxTd2rnqIE8ew0scVbni2_T-osWkl74JCet-oF6p_SPOohlU94J9oZQav3rRUHivw/w360-h640/violet-long-covid-gum-v2.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">At this point, I was no longer working and on (private insurance) disability and applying for Social Security Disability. We rented out our home and moved into another family home to survive the financial impact of Long Covid. I had to begin pacing myself with writing and drawing. Reading became an issue as I could no longer read and retain often re-reading pages without being able to understand. Drawing continued to be my replacement for running and (trying to) be an advocate for my fellow Long Covid friends.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Perhaps my last most ambitious project was another inspiration from the movie "Alien." I created a few drawings that was once again a metaphor for the burning in my chest that I described to many doctors as "organs cooking inside my chest." I created a <a href="https://youtu.be/Ur9pmeV_E4k">YouTube video</a> of the famous "chestburster" scene that I felt aptly described that sensation. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://youtu.be/Ur9pmeV_E4k" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2833" data-original-width="6667" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8q613WGkNNxoVOJuL01DT8dsOqVWOqRYs6_0iv15nAUCV4t6C1YCXGIVLeI624XvOP_yzGHApkXtVr1wpilmzDle5uIqvJV82jHGPoAU6euhS9Y03ckoXavpb1De147WdCOUZ_lYHDCmo85SeG9o1lD729Ohg4kantP9e0DWFvZtxNRBMuwy4G2WYvQ/w640-h272/covid-alien-SBM-scene-nine.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">I say most ambitious from a standpoint of how much time I can sit at a computer and draw. I went to more simple illustrations that define my journey. Again, I drew influence from film and the movie "<a href="https://en.wikipedia.org/wiki/The_Ring_(2002_film)">The Ring</a>." Looking inside a well, you can see symptoms etched on the stone wall along with feelings such as "despair" and "lost hope" as the Long Covid black crow circles over my head.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDaRZ8la2Ak0IhifAPn60dlQLBDrj0ERhMhVt6qnrqVvKqE7IUMYz60XpLf4kcK0aRWK_sjASjeUl8pfspSxfalLx7wBHgrFVEjl7Fuwi3oPY-6sK3-Lm9u87FAFC4uAcJYuQjjHsVh8CrhB6epxUPFkBI3TWHHUFETCrByZcUn7URlXbGhyGzmTOlMA/s1920/SBM-covid-wel.gif" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDaRZ8la2Ak0IhifAPn60dlQLBDrj0ERhMhVt6qnrqVvKqE7IUMYz60XpLf4kcK0aRWK_sjASjeUl8pfspSxfalLx7wBHgrFVEjl7Fuwi3oPY-6sK3-Lm9u87FAFC4uAcJYuQjjHsVh8CrhB6epxUPFkBI3TWHHUFETCrByZcUn7URlXbGhyGzmTOlMA/w360-h640/SBM-covid-wel.gif" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">A simpler graphic at the end of 2021 showed symptoms and feelings as depression and brain fog became "thick" with my journey. Similar to being an alcoholic, I suppose depression will always be something I have to manage, but lately <a href="https://www.braincodecenters.com/">Braincode Centers </a>neurofeedback therapy has helped with both depression and the "mind racing" I describe as I try to sleep each night. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I ended 2021 with my annual "Runner's Thanksgiving Toast: Covid Edition" that helps with that awkward time when everyone is supposed to say what they're thankful for. The Long Covid edition included, "I am most thankful for Zoom with Grandpa without his pants on." Sorry, TMI.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnD5r00CceyeliZ2NBY9u0y0B4z_59qt2FIl0unIvPeoC9In6vw_7UL4a8lhZAnysGchN4z4Co-ryg4zUtXWYuM6IOY--_XH44dV5DWOXV5frtPqlwrmw2LwtN6r3JsL8yQ-c65YPbLAz8yYygQgrDotS2dyGXd8n-rr0mKg1w5kY978xbuxBn2lm_Dg/s1200/TURKEY-THANKS-SBM-2020.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="650" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnD5r00CceyeliZ2NBY9u0y0B4z_59qt2FIl0unIvPeoC9In6vw_7UL4a8lhZAnysGchN4z4Co-ryg4zUtXWYuM6IOY--_XH44dV5DWOXV5frtPqlwrmw2LwtN6r3JsL8yQ-c65YPbLAz8yYygQgrDotS2dyGXd8n-rr0mKg1w5kY978xbuxBn2lm_Dg/w346-h640/TURKEY-THANKS-SBM-2020.jpg" width="346" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">As the complexity of my drawings waned so did the frequency of blog posts symptoms got worse and I tried to manage the anxiety, depression, and "wicked mind racing." Some of my artwork is created in Adobe Photoshop but I also like to create videos with <a href="https://www.adobe.com/products/aftereffects.html">Adobe After Effects</a>. The video below depicts the "burning feet" and chest issues that have continued to define my journey.</div></div></div><br /><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/FEvOIwi3RA8" title="YouTube video player" width="560"></iframe></div><div style="text-align: center;"><br /></div><div style="text-align: left;">A quick piece but pretty much sums up the story of all of us with Long Covid is the "So Over It" graphic. #word</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiWn2vCzrkMCkV6j48gVWoxyLrHePayruLuJfaShgvRAW7Dmkd6DTbIWIw1nGWkYgSa4riBXTO82PAxIHkjN-ZJrCEjlYivUNs1QW-VTJl5pOZqJrxgImO2Ost2ggcbcu0rVcGDIfEo-SpX9VElC9zcBoi6P7NP2YqNA1_2d-oD4gqtiwPNlRga78Osw/s490/so-over-it-SBM.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="490" data-original-width="490" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiWn2vCzrkMCkV6j48gVWoxyLrHePayruLuJfaShgvRAW7Dmkd6DTbIWIw1nGWkYgSa4riBXTO82PAxIHkjN-ZJrCEjlYivUNs1QW-VTJl5pOZqJrxgImO2Ost2ggcbcu0rVcGDIfEo-SpX9VElC9zcBoi6P7NP2YqNA1_2d-oD4gqtiwPNlRga78Osw/w640-h640/so-over-it-SBM.jpg" width="640" /></a></div><div style="text-align: left;">As my Social Security Disability (SSD) was denied, once again a few of my posts become political and it's hard not to. In the U.S., there are upwards of 33M Americans with Long Covid and roughly 70-80% of initial SSD claims get denied. Those two don't compute. I discussed navigating Social Security disability in the illustration below (and in this <a href="http://www.seekingbostonmarathon.com/2022/08/navigating-choppy-waters-of-long-covid.html">POST</a>.)</div><div style="text-align: left;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilZ-gJSK1_sOncAwaoG4b94JmeHncsdacsgHxVKYft-R_0N9ycpNI4_au2trj6LUl3Al1EDxL3pnYukMPSMCMH-eDxwgu3cQG46xvOv47JR0alp5ildfaNXXov-_kc-t9BA3bnXiG0QFBxBAvA_3wjfdMyUPhr0vsLviApVaA5di_1YLiYplYTkMm0HA/s1600/disability-choppy-waters-v2.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilZ-gJSK1_sOncAwaoG4b94JmeHncsdacsgHxVKYft-R_0N9ycpNI4_au2trj6LUl3Al1EDxL3pnYukMPSMCMH-eDxwgu3cQG46xvOv47JR0alp5ildfaNXXov-_kc-t9BA3bnXiG0QFBxBAvA_3wjfdMyUPhr0vsLviApVaA5di_1YLiYplYTkMm0HA/w640-h360/disability-choppy-waters-v2.jpg" width="640" /></a></div><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;">My angst with the Country turning a "blind eye" to those with Long Covid and three House Bills stalled are covered along with what I think we need to do in (<a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">THIS POST</a>) and a few related posts and videos below.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0kRSyA7wfjzXX1vFJnLWsI_oZrJFPuvSpH4htTHfGnGmWX4i0O_cZimsuqGPf-4wNcETQduExNRrzQMLUx6qBzkzdpbKp6GRzg-rTkFGwD4EFKoYwFMUSoIUa6wz9rylWhpR-VYA4XSlTTpHZOlzWhzUUflAypJVxuTKZieGQ0MxhCpPWm9i2LeqTQ/s1280/biden-jaws.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN0kRSyA7wfjzXX1vFJnLWsI_oZrJFPuvSpH4htTHfGnGmWX4i0O_cZimsuqGPf-4wNcETQduExNRrzQMLUx6qBzkzdpbKp6GRzg-rTkFGwD4EFKoYwFMUSoIUa6wz9rylWhpR-VYA4XSlTTpHZOlzWhzUUflAypJVxuTKZieGQ0MxhCpPWm9i2LeqTQ/w640-h360/biden-jaws.jpg" width="640" /></a></div><br /><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwJDY58Ob3hFqjPEL6gTgCNNSrJ3dD_AFyVSulWMOJdDOPCeU1W0IbSXPxcZ0gWzatLsg16vY5MkyFftb0sJoJ4nSjsr-5KZJWqhrhNIs8JUIBocj-VWv6-SR4YwHyBmvLPpwkk954hGRfjqCetiswkXxCWM_MsvQrVxx8tOD7v9SCRAzNsf1L5V0FrA/s1200/dont-do-it-CDC-Director.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwJDY58Ob3hFqjPEL6gTgCNNSrJ3dD_AFyVSulWMOJdDOPCeU1W0IbSXPxcZ0gWzatLsg16vY5MkyFftb0sJoJ4nSjsr-5KZJWqhrhNIs8JUIBocj-VWv6-SR4YwHyBmvLPpwkk954hGRfjqCetiswkXxCWM_MsvQrVxx8tOD7v9SCRAzNsf1L5V0FrA/s320/dont-do-it-CDC-Director.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">
<br /><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/zJw_AY5MOGc" title="YouTube video player" width="560"></iframe> </div><div style="text-align: center;"><br /></div><div style="text-align: left;">Another economy metaphor was my recent "Titanic" ship as I've tried to "turn up the heat" with my Federal Senate and House of Representatives who again seem to have their "head in the sand" on those with Long Covid and the economic impact. </div>
</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm6KKybrTn6_ro60EKDARNJcm7dNLgbyqIaTlUaJ0E7Yle33pSqD17V6GIaW2_hM_Igwb07t7P_SUbIUGDLVeRI9CiQcqYAnps8gD9uTfxWZewLfgCOJwn6Nbs2jbE6TPzPKqQUsly25iyiCxU7daSBGEv9eUY3DsEIbMMqkpekFEs85Wl_b4Vp9I1gg/s2078/titani-sbm.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1495" data-original-width="2078" height="460" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm6KKybrTn6_ro60EKDARNJcm7dNLgbyqIaTlUaJ0E7Yle33pSqD17V6GIaW2_hM_Igwb07t7P_SUbIUGDLVeRI9CiQcqYAnps8gD9uTfxWZewLfgCOJwn6Nbs2jbE6TPzPKqQUsly25iyiCxU7daSBGEv9eUY3DsEIbMMqkpekFEs85Wl_b4Vp9I1gg/w640-h460/titani-sbm.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">A common challenge or "tease" if you will is some days you wake up and feel that this is the day I'm going to feel better, or more aptly, "I don't feel as bad as I normally do." This false sense of hope at least for me is often hit like a shovel on the back of the head as my symptoms tend to grow or appear stronger as the day wears on as shown in this short video below.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">
<br /><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/3h7pWdJmfaY" title="YouTube video player" width="560"></iframe></div>
My latest Long Covid short video was featured on<a href="https://twitter.com/LongCovidSOS"> Long Covid SOS</a>--thanks to <a href="https://twitter.com/DaviesLunt">Helen Lunt Davies </a>and everyone there for advocating for people with Long Covid. (click on the image below for the YouTube short.)</div><div class="separator" style="clear: both; text-align: center;"><a href="https://youtube.com/shorts/j4jAo93cPlQ" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="580" data-original-width="376" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkGVajCp1W0gNBTV-_MTlqy0XKqdX2cjLsrEI6994MNvCVa5PZ4RW-3T6yON9ngzEhghcN2ao49tiR--97tkZzkGr1VPT5kNn7BzUz68XgjdKA8ECwlccMhhO1dq-mUCZi_lC4ptRlrtj8t32dAxHHhkHKn3bRbdXfXXJ3h8Lq5rj1_PfrbsslcClA4Q/w414-h640/yo-yo-youtube.jpg" width="414" /></a></div><div class="separator" style="clear: both; text-align: left;">As I continued to try and find treatment working with Mayo, National Jewish Health, UC Health in Denver and more recently with a Long Covid clinic in CA and OR called RTHM, the world mourned the loss of Queen Elizabeth. As I shared above, it was the last trip I went on with the family abroad to London. I created a tribute as I've always had a high regard for the Queen and the UK. Many of my best Long Covid friends are from the UK. Only seemed fitting.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnsRM5_Q3MWgfTE9ay3twFc6BOZuR0P04q80yOcs0Dp9gqY7B9K6xn4KgkfAEu4pzDvbjEDz6-I-N1HlHlek_eNu581ANbxSlCtmGtTpFkXqUYGhMXbXSbMAhDOYMd5OAbXMu_rsPIKtb5WK2n1eLHn34ufP5-Gi4VB2s_MWrzVzdY9tyVnrUNvjrDw/s1920/god-save-the-queen-v3.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnsRM5_Q3MWgfTE9ay3twFc6BOZuR0P04q80yOcs0Dp9gqY7B9K6xn4KgkfAEu4pzDvbjEDz6-I-N1HlHlek_eNu581ANbxSlCtmGtTpFkXqUYGhMXbXSbMAhDOYMd5OAbXMu_rsPIKtb5WK2n1eLHn34ufP5-Gi4VB2s_MWrzVzdY9tyVnrUNvjrDw/w360-h640/god-save-the-queen-v3.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">This week marked 1000 days of Long Covid as I mentioned my "onset" was in January of 2020. Way too long to be sick. I created two videos to (can't really say celebrate) the milestone.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://youtube.com/shorts/MyBtf75PxkI?feature=share" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="580" data-original-width="376" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLScEHr-24Z4xKoytQrNwh_b2B_73yNzR-U4-VcdNn-skJCHNQX17W9Wq96JZEYI83VGhF3XOiXfSJoy2JmvDnapuqoLNZzRGlv13c9aYHtun-BtxGRsMMe8sTAdvMC2WMWLv6AqNiOJKqaJIBTng_HYNwk8uwvhxO3nRJnbvddBqOkTCDE8GcVvHnHg/w414-h640/marilyn-LC-anniversary-youtube.jpg" width="414" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div style="text-align: left;"><br /></div>
<br /><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/dfl9NsYfLgg" title="YouTube video player" width="560"></iframe></div><div style="text-align: center;"><br /></div><div style="text-align: left;">I didn't realize how many creations I've had over this journey. I'd like to think that I find the right treatment or as with some people with Long Covid, for no particular reason, they start to emerge from the fog. Regardless, running will remain a "carrot" to chase to get back to the life I had.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXAw30wuV2Rn8_bMdHccs-solxm09068YK6Z01lfW6JkPNBBSQQvdS-X_ib45VzzzlS7B668BNVxTv5WNBSfP9TAeNpy-msQ4HRm73aiMJuCM34nOLB70rGpfvZvU0E5LEbLg9veOlemAnwRlTio7jKg6aLg6Usjm9TXVqK1Sqrc9sHxzqIr8cBv0HVg/s1920/breakdownv2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXAw30wuV2Rn8_bMdHccs-solxm09068YK6Z01lfW6JkPNBBSQQvdS-X_ib45VzzzlS7B668BNVxTv5WNBSfP9TAeNpy-msQ4HRm73aiMJuCM34nOLB70rGpfvZvU0E5LEbLg9veOlemAnwRlTio7jKg6aLg6Usjm9TXVqK1Sqrc9sHxzqIr8cBv0HVg/w360-h640/breakdownv2.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">I'll leave you with one last "light" creation using <a href="https://www.adobe.com/products/character-animator.html">character animator from Adobe. </a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/3nSJKGm05SY" title="YouTube video player" width="560"></iframe>
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</div>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com3tag:blogger.com,1999:blog-8476235401101578979.post-56955072142703469022023-04-02T11:06:00.002-07:002023-04-02T11:06:24.012-07:00Day of the Living Dead<p>We've jumped the shark. Despite people continuing to die from Covid-19 and more people facing permanent disability with #longcovid, Joe Biden and the good 'ole US of A is <a href="https://www.nytimes.com/2023/01/30/us/politics/biden-covid-public-health-emergency.html">ending the public health emergency for Covid and Long Covid</a>. As I've shared on my twitter, the previous "guy" pretended Covid didn't exist and now Joe is pretending it's over.</p><p>With that, I present my latest digital short, "Day of the Living Dead."</p><p><br /></p>
<div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/b1JF-gN60tg" title="YouTube video player" width="560"></iframe></div><div style="text-align: center;"><br /></div><div style="text-align: left;">Considering what you can do? I'm a firm believer of advocacy and solidarity in the Long Covid community. We just finished #longcovidawarenessmonth and April brings the Solve M.E. Advocacy Week. Details <a href="https://solvecfs.org/advocacy/advocacyweek2023/">HERE</a>. </div>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-59843393493374418002023-02-26T16:12:00.003-08:002023-02-27T07:05:24.592-08:00Vinay the Conspiracy Bear<p>If you've followed my blog or <a href="https://twitter.com/seeksboston26mi">twitter</a>, you've perhaps seen one or both of my #longcovid "<a href="http://www.seekingbostonmarathon.com/2022/12/mean-tweets-long-covid-edition.html">Mean Tweets</a> videos." </p><div class="separator" style="clear: both; text-align: center;">
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</div>Both have featured the "king of gaslighting" Vinay Prasad of UCSF. On Friday, I dropped the audio version of his book, "<a href="https://twitter.com/seeksboston26mi/status/1629135842232143873">Vinay the Angry Conspiracy Bear.</a>" Some understood the #parody while others were confused wondering, "what's up with the bear reference, why a children's book, and what the heck is the reference to sauna?" <p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-ZgDzKByYdM2wqUgwFPUCTEhFBskVjtQPQliXPxJ9J1R_oCLHoC-1HYkT-_T8soN4WyXkOcLeM8LA39a4wglwx9_Z2AcByh9FgLEk-IJf_qW4jVYF69jOSc6riSKt_dqS6odf1BxDKmmsNHiNYk5X4TI_UOrX70lVZE1Q3fL6WpZPQFQindKnUs2H3Q/s1170/vinay-sauna-stalker.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1170" data-original-width="916" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-ZgDzKByYdM2wqUgwFPUCTEhFBskVjtQPQliXPxJ9J1R_oCLHoC-1HYkT-_T8soN4WyXkOcLeM8LA39a4wglwx9_Z2AcByh9FgLEk-IJf_qW4jVYF69jOSc6riSKt_dqS6odf1BxDKmmsNHiNYk5X4TI_UOrX70lVZE1Q3fL6WpZPQFQindKnUs2H3Q/s320/vinay-sauna-stalker.jpg" width="251"></a></div><br><br><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div>I'll do my best to explain the insanity. First off, if you take a minute to watch "mean tweets" you will see his repeated encounters with people in a sauna who are wearing a mask. Thus, his bizarre infatuation and ensuing tweets. While I agree with the sentiment, that this sounds miserable, protecting one's self in a small confined environment with a mask is within one's right especially when the deadly part of pandemic is still just that--deadly. <p></p><p></p><p>Why the bear? He continues to feed me (pun intended) with ridiculous tweets that gaslight and spread misinformation around protecting against the dangers of Covid and potential of that leading to Long Covid? One might ask, why would he care?</p><p>The answer to that is in part, "follow the money" famously coined in the classic movie, "<a href="https://m.imdb.com/title/tt0074119/">All the President's Men</a>." Hal Holbrook, playing "deep throat" in a dimly lit garage explains to journalist Bob Woodward (played by Robert Redford) that he couldn't divulge everything, but suggested Woodward, "follow the money."</p><p></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="960" src="https://www.youtube.com/embed/c9nndWXoHEg" width="540" youtube-src-id="c9nndWXoHEg"></iframe></div><br>I'll admit, I didn't fully understand Prasad's "over-the-top" campaign against reasonable safety measures. A few replies to my video and a few DM's dropped in my twitter enlightened me as to the (what seems like) financial motivations. He does take on a lot of "headwind" against notable names like <a href="https://twitter.com/PutrinoLab?t=zzez6j8GXuc-Hn42MVzOng&s=09">Putrino</a>, <a href="https://twitter.com/resiapretorius?t=PdVW8VWDniCvxXENbUzpKA&s=09">Resia</a>, <a href="https://twitter.com/dbkell?t=93VCMNsTuP9pXyhuJOe2Tg&s=09">Kell</a>, and <a href="https://twitter.com/WesElyMD?t=G1Eal9ov5fgHkKQqHDGxTw&s=09">Ely</a> who all warn of the dangers of Covid and Long Covid and are seeking a solution. Alternatively, Vinay chooses to gaslight. <p></p><p>I honestly asked Vinay (aka Dr. Seuss, aka #saunastalker,) to join the Long Covid Lounge hosted by Dave known as "<a href="https://twitter.com/D_Bone">D-Bone" on twitter</a> to tune in and understand why his messaging is so hurtful. I also wondered as a supposed Dr. sworn by the hippocratic oath of ethics to be so unethical and how could the <a href="https://www.ucsf.edu/">University of California San Francisco l</a>et him run amok. </p><p>The first domino to drop was shared by <a href="https://twitter.com/THRIVELMFT">Kathryn on twitter</a>. </p><p><a href="https://twitter.com/tnicholsmd?t=LD3VLVRfxAZOKRvm-FBdkA&s=09">Taylor Nichols</a> helps explain and connect those "dots" in his article in Medium, "<a href="https://tnicholsmd.medium.com/covid-contrarians-and-the-influence-of-funding-in-medicine-587d04ad1b44">COVID Contrarians and the Influence of Funding in Medicine.</a>" </p><p>He states, "My opinions have continued to state that unfortunately, politics have played a dirty hand with the management or should I say mismanagement of Covid-19 in the U.S. and around the world."</p><p>In my opinion, Trump downplayed it, mocked mask-wearing, and vilified "Saint Fauci." As a result, those that vote "red" have become anti-science, anti-mask, and anti-vax.<br></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://twitter.com/DanFmTo/status/1489281739922968577?ref_src=twsrc%5Etfw%7Ctwcamp%5Etweetembed%7Ctwterm%5E1489281739922968577%7Ctwgr%5Ee0d9d4ae739c5d5e5810cb679b1327a1f7d522ad%7Ctwcon%5Es1_&ref_url=https%3A%2F%2Fcdn.embedly.com%2Fwidgets%2Fmedia.html%3Ftype%3Dtext2Fhtmlkey%3Da19fcc184b9711e1b4764040d3dc5c07schema%3Dtwitterurl%3Dhttps3A%2F%2Ftwitter.com%2Fdanfmto%2Fstatus%2F1489281739922968577image%3Dhttps3A%2F%2Fi.embed.ly%2F1%2Fimage3Furl3Dhttps253A252F252Fabs.twimg.com252Ferrors252Flogo46x38.png26key3Da19fcc184b9711e1b4764040d3dc5c07" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="858" data-original-width="916" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtEPyIRxgUputPP50gpb8-fH9MUdIffo_apq2VKlAhsu4NyxofvDWDQPS5Ouzgj2ad_UnKff1q7xoVO8Vuh6n4fpf7IVp5U8jF6Ln3XQyIIsfs8ZnwFFmXlRGjDEmRi3exYLoAPl07Owc5Bg750t9nb8kJJQ9Qdeuu-hmPkv7Z3FH7eUa8Nk8RAl7jYA/s320/vinay-conflict-of-interest.jpg" width="320"></a></div>Not to be outdone, Biden pretended to care and now pretends the danger(s) are over. <p></p><p>Back to the thread connecting photos of Vinay Prasad on the corkboard. Nichols does a much better job than I could, but the short version is that (John Arnold of) <a href="https://www.influencewatch.org/non-profit/laura-and-john-arnold-foundation/">The Arnold Foundation </a>has seemingly noble intentions but includes a mission statement that includes education and election reform and "scientific research reform." </p><p>This is where Vinay's insane motivations enter the picture. Nichols write, "He has been loud and wrong for years now, which has only been amplified over the course of the COVID pandemic."</p><p>Some of Arnold Foundations efforts "lean left" which is surprising that "masking" and vaccines (which are typically "left" positions) are strongly opposed by the "sauna stalker." </p><p>Despite not being a pediatrician, Vinay gets on his soapbox dishing out advise for parents and children around masking and vaccines. </p><p>The second "domino to fall" was an article by <a href="https://twitter.com/19joho?t=HoRoGcdjgvPqZ7wlHPl74Q&s=09">Jonathan Howard</a>. He wrote for Science Based Medicine (what a novel concept,) "<a href="https://sciencebasedmedicine.org/ofcoursenot/">Are Vaccine-Advocates “Idiots”, Indifferent to the Death of a Mentally Ill Woman and Her Family</a>?" Tragically, a woman ended her life along with her two boys and the king of empathy, tweeted and incorrectly connected the dots to societal failures around Covid. What? or more appropriately, "what the fuck??" </p><div class="separator" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-A1U8FVcYFUahoxY7cMo5gNE6M25z3FwBXYb4ut4LmkJmg6l2Zaar_3-MSRSbFma9CU_VvqXP3LYLXV5rBgbdc9RXKrcWbMVW8NIZD9zlRQYgCqlcEDZG8XZ9nlsgrbe3ka8UOzXygCEAVj_hW5H50xHtpw_K0rYt61PYZX7YQHFiqDlkKb5YlYegQ/s1170/vinay-tragedy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1170" data-original-width="888" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-A1U8FVcYFUahoxY7cMo5gNE6M25z3FwBXYb4ut4LmkJmg6l2Zaar_3-MSRSbFma9CU_VvqXP3LYLXV5rBgbdc9RXKrcWbMVW8NIZD9zlRQYgCqlcEDZG8XZ9nlsgrbe3ka8UOzXygCEAVj_hW5H50xHtpw_K0rYt61PYZX7YQHFiqDlkKb5YlYegQ/s320/vinay-tragedy.jpg" width="243"></a></div><div class="separator" style="clear: both; text-align: left;">Howard writes,</div><div class="separator" style="clear: both; text-align: left;"><br></div><div class="separator" style="clear: both; text-align: left;"><i>"However, the connection between this tragedy and “idiots on Twitter” isn’t clear. Is Dr. Prasad actually suggesting that if only doctors had not advocated for pediatric vaccination on Twitter, this family might still be alive? Such tragedies happened before the pandemic, and I’ve been treating patients like Ms. Cannady for 20 years. Not once has anyone said, “This patient would have been just fine, were it not for the Twitter posts of vaccine-advocates“.</i></div><p></p><div class="separator" style="clear: both;"><i>Large numbers of Dr. Prasad’s Twitter audience won’t know this however. They mindlessly clicked in agreement as Dr. Prasad absurdly linked Ms. Cannady’s death to the social media habits of vaccine-advocates. When they encounter a vaccine-advocate in the future, they’ll then see a cruel soul, someone who is indifferent to the deaths of a mentally ill woman and her children. That’s what Dr. Prasad is hoping for, and it’s no surprise vaccine-advocates often deal with abuse online. Esteemed doctors at esteemed universities told them we were “idiots” after all."</i></div><div class="separator" style="clear: both;"><i><br></i></div><div class="separator" style="clear: both;">Since I posted I found another <a href="https://twitter.com/DrSusanOliver1/status/1564571752662847488">tweet </a>(and) powerful YouTube video from <a href="https://twitter.com/DrSusanOliver1">Dr. Susan Oliver</a> of Australia. She shreds the "little bear" and shares yet another bizarre thread from Sauna Stalker suggesting further the measures put in plus thus far will lead to a series of events that will end democracy. His tin foil hat on full display in her epic video below. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both; text-align: center;">
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<br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">He's so "bat shit crazy," Doctors in Australia are speaking out. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Speaking "speaking out" and speaking of of Long Covid, I'm "spent" from writing this and feel I've barely scratched the surface of his motivations and depravity. At first I thought perhaps, I'd gone too far. Now, I feel I haven't gone far enough. </div><p><br></p>
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</div>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-76027476452724161042023-02-26T13:28:00.000-08:002023-02-26T13:28:06.147-08:00Mean Tweets: Long Covid Edition<p><i>UPDATED: (February 26, 2023) Added #LongCovid Mean Tweets Second edition with a return appearance from Dr. Seuss (aka #saunastalker.) </i></p><p style="text-align: center;"> <iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/5HHxsc0yvnc" title="YouTube video player" width="560"></iframe>
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</p><p>For those fans of Jimmy Kimmel and his "Mean Tweets" segments, I present to you from Seeking Boston's creative studio; "Mean Tweets: Long Covid Edition."</p><p style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/TRVBqWPJWps?start=1" title="YouTube video player" width="560"></iframe><br /></p>
<div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;">While this is trying to add (dare I say) humor to a very serious topic, most people with Long Covid are tired due to the fatigue component of this post-Covid illness that sends many like myself into a life of disability. We are also tired of "gaslighting" Covid-19 and Long Covid. We are tired of (so-called) medical professionals that spout out anger and misinformation. Your words have consequences. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">A family member confided in me and shared their Long Covid story. Yesterday, after firing their first doctor, the second one said that "losing weight" and waiting for the one year mark (oh, and exercising) will magically make all the symptoms go away. This is why I continue to campaign for awareness and reform. Write to your government officials. Raise your voice. We need research, reform, and investment. A deeper dive into my thoughts on what needs to happen in my previous post <a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">HERE</a>.</div>
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<p><i>References:</i></p><p>Is it Long COVID, or Dementia, or Both? WebMD</p><p><a href="https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both">https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both</a></p><p>More proof COVID is a multi-system cluster bomb: Insight + Powered by AMPCo: </p><p><a href="https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/">https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/</a></p><p>Professor Kell Bioanalytical Sciences Group Publications: (with Multiple contributions from Resia Pretorius) </p><p><a href="http://dbkgroup.org/publications/">http://dbkgroup.org/publications/</a></p><p>COVID-19 infections increase risk of long-term brain problems</p><p>Washington University School of Medicine in St. Louis, Kristina Sauerwein, Ziyad Al-Aly, MD, Clinical epidemiologist at Washington University</p><p><a href="https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/">https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/</a></p><p>Dr. Wes Ely Tiktok (Long Covid Videos and Bio)</p><p><a href="https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658">https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658</a></p><p><a href="https://medicine.vumc.org/person/e-wesley-ely-md">https://medicine.vumc.org/person/e-wesley-ely-md</a></p><p>Man sick with COVID-19 for 14 months details struggle with brain fog and more: Meet Ty Godwin, a man who has experienced ongoing COVID-19 symptoms for over a year.</p><p>Tom Costello, NBC News Correspondent, Chrissy Callahan, Journalist Today Show</p><p><a href="https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614">https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614</a></p><p>Long COVID: The impact on language and communication: Professor Louise Cummings, Hong Kong Polytechnic University</p><p><a href="https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/">https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/</a></p><p> </p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com1tag:blogger.com,1999:blog-8476235401101578979.post-60313759922210280402023-02-21T10:25:00.001-08:002023-02-21T10:25:01.622-08:00Ignore it, Get it, Regret it<p>The California Department of Public Health put out a "propaganda video" titled "Test It, Treat It, You Can Beat It." Absolutely shocking that a State as large as California that "leans left" would put out this level of misinformation. With that, I put the creative staff to work creating our rebuttal alternative video.</p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="432" src="https://www.youtube.com/embed/7IW4Cm1bzwk" width="768" youtube-src-id="7IW4Cm1bzwk"></iframe></div><br /><p><br /></p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-63020710849443437132023-02-03T10:50:00.002-08:002023-02-03T10:53:23.132-08:00Navigating the Choppy Waters of Long Covid Disability<p><i>UPDATE (February 2023.) Working with a law firm, I have been notified that I have been approved for Social Security Disability. My "Notice of Award" has not arrived but I received notice from my disability attorney and confirmed with my local Social Security office. Overall, this took 15 months with one rejection and WITHOUT a hearing--I hear that's quite uncommon. Not uncommon considering the breadth of my disabilities. </i></p><p><i>Disclaimer: This is my experience and opinion; NOT professional employment or disability advise. Consult with your spouse, partner, family, and attorney before navigating these "choppy waters."</i></p><p>If you've read any of my blog posts, you know I draw quotes and analogies from film quite often. When talking or writing about Long Covid Disability, I'd quote Chief Brody (from <i>Jaws</i>, "You're gonna need a bigger boat" to navigate these waters.</p><p>It's hard to put my Long Covid life into perspective. It's not appropriate or fitting to use the word "fortunate" with the "cards in my hand," (in my case, an inside straight missing the inside card) but sometimes I do feel "more fortunate" than others when it comes to my healing journey and treatment for #LongCovid. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqPufJgNS6bjwzlgbgC5NjtiUJxDA52XfY1dS4CZNByMAdVjo1GN4IfcuaSBBPAnpUPTyL7OzmEopMxEwBNdd46J7lVBMfgFgMXPYgcnkpWuywkd37JfwPR9VfV1VccEv033XfEb_NtWkIouoRgYBKnKJkjNRnz04fO_l-gGjLhEahmAj91jEiFgB6Dg/s1600/disability-choppy-waters-v2.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqPufJgNS6bjwzlgbgC5NjtiUJxDA52XfY1dS4CZNByMAdVjo1GN4IfcuaSBBPAnpUPTyL7OzmEopMxEwBNdd46J7lVBMfgFgMXPYgcnkpWuywkd37JfwPR9VfV1VccEv033XfEb_NtWkIouoRgYBKnKJkjNRnz04fO_l-gGjLhEahmAj91jEiFgB6Dg/w640-h360/disability-choppy-waters-v2.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><p>I feel fortunate in the sense that (while under review AGAIN,) I'm on private insurance disability. A <a href="https://www.npr.org/2022/07/31/1114375163/long-covid-longhaulers-disability-labor-ada">recent article from NPR </a>estimates that there are 4M people out of work in the United States due to Long Covid. I think that number may be "light" in that most estimates vary between 20-30% (some lower and higher,) of those that get Covid will develop into Long Covid. Even if you called it 20%, that's 18.6M people with Long Covid in the United States (based on the CDC number of 93M people who've contracted Covid in the U.S.)</p><p>What's my point? That's a ton of people either out of work or people working through illness--like I did for awhile before I went on disability.</p><p>My non-scientific study based on feedback from <a href="https://twitter.com/seeksboston26mi">Twitter </a>and <a href="https://www.instagram.com/seekingbostonmarathon/">Instagram </a>(totally not scientific) is that the vast majority of those struggling with work and Long Covid didn't think to file for FMLA (Family Medical Leave Act) or short-term disability (or long) while still employed. This is NOT legal advise as free legal advise is like buying a discount parachute. My "two cents" of legal advise is to immediately file for FMLA and if warranted, file for short-term disability. FMLA (usually filed with HR or your manager) provides protection against (fundamentally) being fired because you are sick. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivpjIUeI0hfy1j2TuR2ljHppaqMfKtz9CuKsV8j7pQJ3Gv7woKcQIE9hE7KdqoQC5R3PVLJIVDfqRs_LRk5oVl13RHZCH91so9vMpmN88OhIoGmhMvSJUUFwcaW5Sh5koFJgeQDnF9K2qlUNBVGAPSLHB412yxhTqvS6RyPei82ih_Dubd0YXRUwx1cA/s628/ssdi.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="507" data-original-width="628" height="323" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivpjIUeI0hfy1j2TuR2ljHppaqMfKtz9CuKsV8j7pQJ3Gv7woKcQIE9hE7KdqoQC5R3PVLJIVDfqRs_LRk5oVl13RHZCH91so9vMpmN88OhIoGmhMvSJUUFwcaW5Sh5koFJgeQDnF9K2qlUNBVGAPSLHB412yxhTqvS6RyPei82ih_Dubd0YXRUwx1cA/w400-h323/ssdi.jpg" width="400" /></a></div><br />I've lost track of how many people I've heard from with Long Covid that tried to continue working yet management reprimanded or ultimately fired them because they couldn't perform their duties.<p></p><p>I dove into a twitter thread recently on the topic where someone struggling with Long Covid in the workplace said, "who wants to employ someone who may be able to work 5-10 hours a week but can't guarantee it?" To which I replied, "Add to that; can't guarantee what time I show up to work. Likely will call in sick the next day if I overdo the 1.5 hours I work that day and I'm highly prone to mistakes (due to brain fog.) What does brain fog look like? Paying bills twice or forgetting to pay them. Forgetting my kids birthdates, inability to read and retain, forgetting where I'm driving to, and sluggish responses to basic questions.</p><p>All that makes me super desirable as a potential employee. #sarcasm </p><p>Add to that, I'll be going in for IV/IG infusions every three weeks for four days a week over the next six months. The first round of treatment landed me in the Emergency Room (future post on IV/IG treatment.)</p><p>Depending on your employer's benefit package, you typically have health, dental, 401K, flex spending which we all generally sign up for. Near the bottom of that benefit list is usually a modest life insurance policy and short-term and long-term disability. AGAIN...this is not universal and you should check your current employer benefits with your Human Resources. </p><p>In my case, I initially filed for FMLA then eventually short-term then long-term disability while still employed. For the moment, I have long-term disability payments in place even though I haven't worked for my previous employer for over a year. My policy warrants that since the disability happened while employed, and I "filed" while employed then (in theory) I'd have disability benefits until retirement age.</p><p>That all sounds great but it's paying out (at least in my case) at roughly 50% of what I was making so it is quite a "haircut" in income. This explains why we rented out our home and have been living with family for most of 2022 to try and cover that income "gap" and pay for the exorbitantly expensive COBRA Insurance. COBRA is a Federally-supported program that allows you to pay "out-of-pocket" (#understatement) for continuation of health, dental and vision insurance when you're "let go" from an employer. Something most of us thought we'd never need.</p><p>Given the 170+ Dr. appointments I've had since getting sick in January '20, continuation of health insurance was not optional for our household, but it ain't cheap. We are paying nearly $1,700 a month for COBRA--combine that with a 50% reduction in income and AGAIN, you can "do the math." My healthcare is "north" of $100,000 and while insurance covers most of this; it doesn't cover all of it.</p><p>This brings us to private insurance versus Social Security Disability. Depending on income history, the former would likely pay more than the later but I can't state that as "universal" but would certainly love your comments at the end of this post on your experience. In my case, my disability insurance company is paying for a law firm to apply for Social Security Disability. Why would they do that? Math again.</p><p>Any benefits I'd potentially get from Social Security Disability would be deducted from what the insurance company would have to pay so you can see where they'd be motivated to go this route. IF approved (I've already been rejected on my initial application) they would pay in arrears to the time of disability. Don't get too excited. In my case, (if approved,) any "balloon payment for the above would be "clawed back" by the insurance company--again--this is why they're offering the legal service.</p><p>One more nuance to this whole SSDI formula is that (as I understood it,) you're also financially motivated to file as this fundamentally stops recording income history. In my case, I was in a lucrative industry as a software sales executive. Social Security continues to record year-to-year income so with drastic "drops" in income for me in the last two years would lower my eventual Social Security benefits (non-SSD) once I go on retirement Social Security.</p><p>Let's suppose in the above example, you made $60K a year for 15 years on average. If you'd dropped to zero or even half of that, your annual income average would drop over time as they average in those disability years.(In this example, suppose you didn't work two of those fifteen years, your average income would drop to $56K working the last two years at half pay and $52K without pay those last two years.) Fundamentally that drops your income average THUS lowers eventual Social Security payments.</p><p>All of the above is why I continue to push my Senator Hickenlooper for action (sorry this post is U.S. focused, but again would love to hear global nuances on twitter or in comments below) on Social Security Disability reform. Yes, Long Covid now has a diagnosis code and is now recognized as a Disability according to the <a href="https://www.kff.org/policy-watch/what-are-the-implications-of-long-covid-for-employment-and-health-coverage/#:~:text=The%20Office%20of%20Civil%20Rights,or%20more%20major%20life%20activities.">Americans With Disability Act.</a>, but what reform is needed?</p><p>1) My initial disability claim was denied suggesting there are other jobs I could fulfill. Based on my twitter dialogue, I'm un-employable. We need a stronger acceptance for Long Covid as a Disability (despite it now being recognized,) in my case it certainly doesn't appear to be recognized as a limitation. Some (sub)diagnosis may qualify on their own such as <a href="https://www.disability-benefits-help.org/resources/medical-evidence/peripheral-neuropathy">neuropathy</a>. A good starting point is to have a diagnosis from your doctor or Long Covid clinic such as <a href="https://rthm.com/">RTHM </a>for Long Covid. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnoO4GeLfIEMjL8qy3-AH46ik9o4CFDTdBi35eGHd_D_w-wJP2wsrg0C_XyEFyQig5SsPm-nKJBB_hUjd9N0N_nbHExsljoby3H-Y-vqRTtEjwSq5G0BK0ciAbbx5CiOt9JMboA9iID4GYuioE_i704dH1KNfJK_j3CfJ06xqOZLZU7BAcvOAIi8HmZg/s992/HHS-disability.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="992" height="258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnoO4GeLfIEMjL8qy3-AH46ik9o4CFDTdBi35eGHd_D_w-wJP2wsrg0C_XyEFyQig5SsPm-nKJBB_hUjd9N0N_nbHExsljoby3H-Y-vqRTtEjwSq5G0BK0ciAbbx5CiOt9JMboA9iID4GYuioE_i704dH1KNfJK_j3CfJ06xqOZLZU7BAcvOAIi8HmZg/w400-h258/HHS-disability.jpg" width="400" /></a></div>From <a href="https://www.aetna.com/health-care-professionals/newsletters-news/office-link-updates-september-2022/important-reminders-september-2022/new-icd-10-coding-for-post-covid-19-condition-unspecified.html#:~:text=(U09.9)-,New%20ICD%2D10%20coding%20for%20Post%20COVID%2D19%20condition%2C,as%20shortness%20of%20breath%20(R06.">Aetna</a>, Providers should list <span style="background-color: #fcff01; color: red;">U09.9 </span>secondary to specific codes for ongoing conditions after a COVID-19 infection, such as shortness of breath (R06.02), fatigue (R53), myalgia (M79.1), multisystem inflammatory syndrome (M35.81), and others, according to new tabular instructions for the code.<p></p><p>I have had help from <a href="https://www.mayoclinic.org/">Mayo Clinic</a> dating back to 2021 for diagnosis and assistance with (private insurance) disability and Social Security. If possible find an "occupational medicine" specialist--they are experts in dealing with employee/employer and disability. </p><p>(UPDATE: Since this original post, the (US) Federal Government <a href="https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html">does recognize </a>Long Covid as a disability. </p><p><i>This guidance explains that long COVID can be a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 (Section 504), and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557).</i></p><br /><div><br /></div>
<div style="text-align: center;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/DL9AmIqL488" title="YouTube video player" width="560"></iframe></div><div><br /></div><div>2) Shorter approval periods. My "no" from Social Security took eight months. <a href="https://www.ssa.gov/policy/docs/statcomps/di_asr/2020/sect04.html">According to the Social Security Administration</a>, they reject 67% of claims. Most feedback I've got is that percentage is quite low. For anyone that wasn't able to get private disability insurance benefits while applying and waiting for Social Security, how is someone supposed to pay bills, and keep their homes with this timetable? I have no idea how long my appeal will take, but I understand that many appeals are again denied and IF approved, it's in the third phase which is a hearing.</div><div><br /></div><div>3) COBRA reform. In my example, I'm paying near $1,700 to continue my medical (dental, and vision) coverage via COBRA. Who can afford that when they potentially go to ZERO income? Whether it's universal health care or reform of the Affordable Care Act (ACA,) something's got to give here. Waaaay too expensive for any household.</div><div>4) Social Security benefit reform. In my case, with private insurance I'm getting half of what I was earning. I understand Social Security is potentially less. Suicide rates are climbing with this paradox; losing all your identity via limitations combined with an untenable financial situation is driving depression and some resorting to the unthinkable. Benefits need to be more in line with previous income history.</div><div><br /></div><div>Overall (as seen in the Capitol Hill briefing, "<a href="https://www.youtube.com/watch?v=DL9AmIqL488">Understanding and Addressing Long Covid and its Consequences</a>" to the <a href="https://twitter.com/COVIDOversight">Oversite Select Committee on Coronavirus Crisis </a>last month) we are clearly still at an educating and informative stage with our government. Dr. Verduzco-Gutierrez was one of the panel presenters and I'd highly recommend following her on <a href="https://twitter.com/MVGutierrezMD">Twitter</a>. She gets it. </div><div><br /></div><div>Perhaps if they realized this has a potential $16T impact (<a href="https://jamanetwork.com/journals/jama/fullarticle/2771764">according to JAMA</a>) they might do something for us. I'll save you the 1:27 minutes, we barely achieved cursory knowledge with our politicians, but I recognize the need for continued awaremess. </div><div><br /></div><div>Back to the word, "fortunate." The entire paradox above is exponentially greater within certain racial, or socia-economic demographics. I have disability insurance. I (largely with my wife) and a portion of my brain have been able to navigate this complex process thus far. What about someone without disability insurance or the wherewithal to file for FMLA, engage a lawyer, or get creative around finances to weather this storm? </div><div><br /></div><div>I'm not an economist but $16T sounds like a big "hit" on our economy; not to mention the moral obligation to take care of those like me that have been paying into Social Security since I was bussing tables forty years ago.</div><div><br /></div><div>Income goes to zero + High Cost of COBRA + long process to get anything out of SSD = "You're F'ed!"</div>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com2tag:blogger.com,1999:blog-8476235401101578979.post-1318407716475564692023-01-10T15:18:00.002-08:002023-01-10T15:48:12.323-08:00Diamond in the Sky<p>I had an online twitter friend post a question last night, "People don't talk about Covid because________?" </p><p>My reply was simply a non-flattering image of "TFG." The same day,<a href="https://www.politico.com/news/2023/01/10/conservative-entertainer-diamond-of-diamond-and-silk-dies-at-51-00077184"> news broke</a> that Lynette (Diamond) Hardaway of "Diamond and Silk" had passed away. TFG posted on "Truth Social" that "Diamond's death was totally unexpected, probably her big and precious heart just plain gave out." </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjInTQS-jb9Io9AAvcFFDmxqP3_W5ySSuFZpw39tr3s2WGjx2JDBrpGrUpRLnVWEl0e16OlTlKgNxoUlJLaxNWsAXWluQQhSSj5iJp04aButv5IhCoEQ-36CQn2-s37BR0Z1Y7vfAkP0f2DHKbCf6mbN_cwICbfqNWOvmrm7NKa6rBMv18v3rNg7Pk8Uw/s2209/diamond.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1285" data-original-width="2209" height="372" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjInTQS-jb9Io9AAvcFFDmxqP3_W5ySSuFZpw39tr3s2WGjx2JDBrpGrUpRLnVWEl0e16OlTlKgNxoUlJLaxNWsAXWluQQhSSj5iJp04aButv5IhCoEQ-36CQn2-s37BR0Z1Y7vfAkP0f2DHKbCf6mbN_cwICbfqNWOvmrm7NKa6rBMv18v3rNg7Pk8Uw/w640-h372/diamond.jpg" width="640" /></a></div><br />
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</p><p><br /><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>Having my life (in what seems to be) permanently altered by Covid, I honestly would never wish the worst possible outcome on anyone. The second worst possible outcome seems to be permanent for me with Long Covid as I approach 36 months from the onset of my illness in January 2020.</p><p>This is a good time to point out that I'm not a doctor, nor a scientist, (or autopsy expert) but I certainly know more than most having gone through over 200 doctor appointments and following "credible" research sources (some of which are listed at the end of this post) around the world on the topic as I continue to try and snap the cycle of Long Covid.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD7--T1azcLNju6guqhiFvSjq-N7mLdcZOSyUUBqLFPDZHFBRwb81UtLmR0YEf5pF4-Jep--Gh-INQ0fpuOgqi0xCu2KVDJEPH9BTPgz7lg7vcB7G336ncwxDL-CkJquErvZwYQ0gGQd4xAe8nnCuvArrmfRDHYhfv1YKg16IT8I1AEd11mxPWzrLVhA/s1510/FmE5AzcXEAQ1zaO.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="494" data-original-width="1510" height="210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD7--T1azcLNju6guqhiFvSjq-N7mLdcZOSyUUBqLFPDZHFBRwb81UtLmR0YEf5pF4-Jep--Gh-INQ0fpuOgqi0xCu2KVDJEPH9BTPgz7lg7vcB7G336ncwxDL-CkJquErvZwYQ0gGQd4xAe8nnCuvArrmfRDHYhfv1YKg16IT8I1AEd11mxPWzrLVhA/w640-h210/FmE5AzcXEAQ1zaO.jpg" width="640" /></a></div><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>I won't correlate <a href="https://www.newsweek.com/lynette-hardaway-cause-cause-death-diamond-silk-covid-1772613">Ms. Hardaway's death to Covid </a>other than to point out she was apparently hospitalized with Covid in November. </p><p></p><p>Back to the online poll last night on why people don't talk about Covid. One reason I've pointed out is "story fatigue" similar to the Ukraine conflict with Russia. People generally get tired of a story and lose interest. That's certainly one component. The other (stronger) reason is the politicization of Covid; and subsequently "Long Covid" (or <a href="https://www.cdc.gov/mmwr/volumes/70/wr/mm7037a2.htm">Post Acute Sequalae Syndrome</a>; also known as PASC.) I wrote (or should I say VBLOG'ed) about this in my John Oliver-style "<a href="http://www.seekingbostonmarathon.com/2021/07/mad-vax.html">Mad Vax</a>" post in July '21 on how Covid became such a political hot topic. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuQvfKH2a4pLp89bYyAMRb6hJmVCrpadS6lfWbeeUwmDNyNRDz2spxtDNIDFN-oi0NmGb8BRlYQz6RQAjrfxVXujr2XrZMOTUSWAJKukQ98amPdt7GueK3Tk6sXwRbCWkvQIEPFQEIplpitlduO7sLcUJ4gnnqxty6Fi5N-H06AIevvumib7_mgyQlCQ/s1920/rona.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuQvfKH2a4pLp89bYyAMRb6hJmVCrpadS6lfWbeeUwmDNyNRDz2spxtDNIDFN-oi0NmGb8BRlYQz6RQAjrfxVXujr2XrZMOTUSWAJKukQ98amPdt7GueK3Tk6sXwRbCWkvQIEPFQEIplpitlduO7sLcUJ4gnnqxty6Fi5N-H06AIevvumib7_mgyQlCQ/w640-h360/rona.jpg" width="640" /></a></div><br /><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>The short version of "Mad Vax" is that for some unforeseen political reasons, Covid started out as "I would love to have the country opened up and just raring to go by Easter" ('21.) <div><br /></div><div>As I used to tell my kids, one "white lie" turns into another then a plethora of untruths follow. Trump's little white lie mushroomed into a political position that Covid is nothing more than the flu. I also believe it was greed and power as TFG saw the potential of what a pandemic could do to the economy, his re-election prospects and his "grift" of the office and American people. This evolved further into a staunch QoP political position against; science, research, quarantines, masking, and vaccinations. It also vilified Dr. Anthony Fauci, <a href="https://www.who.int/">WHO </a>and the <a href="https://www.cdc.gov/">CDC</a>.<p></p><p>Enter in Diamond and Silk (D&S) as big fans of TFG. The conservative VLOGGERs stirred the conspiracy "machine" suggesting that it was invented by the media to <a href="https://www.thewrap.com/diamond-and-silk-coronavirus-deaths-media-wanting-trump-to-look-bad/">make Trump "look bad."</a> Um, sorry, Mr. Covfefe did a fine job of that on his own. The conspiracies did not stop there. D&S also claimed that "<a href="https://www.usatoday.com/story/news/politics/2020/04/28/trump-defends-diamond-and-silk-despite-coronavirus-conspiracies/3039249001/">Quarantining people inside of their houses for extended periods will make people sick.</a>" Lest we forget that deaths were so rampant that hospitals ran out of room and temporary morgues were set up in parking lots for the spiraling death toll in 2020.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYe0Y0eUka5wyFfD8tywcOEXIaEPr48E5V_UjaF0gLk9zCF8dl_6KKW2kI7sa71oB6njC_0jBJc3ZNLtesABVUr70YZHmfI3C28nghW-eE535rPWuhzalKtAQUZallCMoNzsdLK3IFwS2EByu-jEWnZVEwtNCUAr3c5DY4xswSmKbb4xdBK3T_1UHEtw/s1280/biden-jaws.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYe0Y0eUka5wyFfD8tywcOEXIaEPr48E5V_UjaF0gLk9zCF8dl_6KKW2kI7sa71oB6njC_0jBJc3ZNLtesABVUr70YZHmfI3C28nghW-eE535rPWuhzalKtAQUZallCMoNzsdLK3IFwS2EByu-jEWnZVEwtNCUAr3c5DY4xswSmKbb4xdBK3T_1UHEtw/w400-h225/biden-jaws.jpg" width="400" /></a></div>These claims seem somewhat benign but the Diamond and Silk's lunacy went "further down the rabbit hole" suggesting, "Bill Gates' desire for a vaccine was somehow aimed at "population control" and wanted verification of <a href="https://www.thedailybeast.com/fox-news-cuts-ties-with-diamond-and-silk?via=twitter_page">where the dead bodies were</a> in New York City. Donning their "tin foil hats" they further speculated that <a href="https://www.thedailybeast.com/fox-news-cuts-ties-with-diamond-and-silk?via=twitter_page">5G technology was being used to infect people </a>with coronavirus. <p></p><p>Diamond and Silk are not alone here as James Woods, Jon Voight, Kirstie Alley, and Kevin Sorbo (among other washed up actors) all "angry tweet" against science and logic with regards to Covid-19. The late Ms. Alley got into a fracas with CNN suggesting the network spun up viewers in "<a href="https://people.com/tv/kirstie-alley-responds-after-cnn-slams-her-for-downplaying-covid/">sheer terror</a>" over what might happen. Yes, death and dying can be scary stuff and actors are not scientists nor are they experts on Covid. </p><p>Regardless of which side of the aisle you sit on politically, it's obvious that Democrats embraced practical measures and Republicans downplayed the virus and any guidelines around protection or prevention. Unfortunately, words have consequences and virtually half the country (United States) subscribe to one stance or the other. The later can have deadly consequences.</p><p>Before you start your "whataboutism," my written wrath is not exclusive to the QoP. This year, Joe Biden famously <a href="https://www.politico.com/news/2022/09/18/joe-biden-pandemic-60-minutes-00057423">went on 60 Minutes</a> and declared Covid all but over. New variants continue. Deaths continue and Long Covid continues. </p><p>As a byproduct of not thinking Covid is real, there's similar wrath about "Long Covid" being a hoax or mental illness. If you don't believe in Covid, you're not going to believe in Long Covid. </p><p>This weekend, someone in <a href="https://twitter.com/seeksboston26mi">my Twitter </a>feed suggested, " it's bad that they're (people with Long Covid) too lazy to work and try to grift the government for money though." I quickly replied that I'd paid over $2M in taxes in my lifetime and have taken literally zero $ from the government in the three years I've been sick. He went silent.</p><p>Short of invoking "sheer terror" there are statistics coming out that risk of heart attack and stroke are significantly higher after having Covid, or experiencing Long Covid. <a href="https://www.heart.org/en/news/2022/03/31/after-covid-19-experts-say-watch-for-these-potential-heart-and-brain-problems#:~:text=Researchers%20adjusted%20for%20pre%2Dexisting,not%20have%20severe%20COVID%2D19.">Researchers</a> adjusted for pre-existing conditions and found that after one year, those who had COVID-19 were 63% more likely to have some kind of cardiovascular issue, resulting in about 45 additional cases per 1,000 people. Risks were elevated even among people who did not have severe COVID-19. </p><p>I learned in my career that you don't complain without presenting answers. I've written ad nauseum about <a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">solutions</a>. Unfortunately, (at least in the US,) there have been three House Bill introduced that all fall short of covering all the issues. All of them (shocker) have been authored by Democrats including Senator Tim Kaine who suffers from Long Covid. Now with the QoP having a majority in the House, I hold little hope that anything will be done. Joe caved into political pressure and now the party that think's it's a hoax is in charge.</p><p>Unfortunately, one little white lie about Easter snowballed into a political movement that creates serious headwind towards change. With that, I appreciate those that still stick to science and are searching for solutions (including but not limited to <a href="https://twitter.com/resiapretorius">Professor Resia Pretorius</a>, <a href="https://twitter.com/PutrinoLab">Putrino Labs</a>, <a href="https://twitter.com/dbkell">Professor Doug Kell</a>, Dr. <a href="https://twitter.com/WesElyMD">Wes Ely</a>, <a href="https://twitter.com/RTHM_Health">RTHM</a>, <a href="https://twitter.com/drclairetaylor">Dr. Claire Taylor,</a> <a href="https://twitter.com/organichemusic">LongCovidPharmD</a>, <a href="https://twitter.com/VirusesImmunity">Professor Akiko</a>, Dr. <a href="https://twitter.com/MVGutierrezMD">Monica Verduzco-Gutierrez,</a> and <a href="om/elisaperego78">Dr. Elisa Perigo</a>) to help prevent death or permanent disability related to Covid-19. </p><p>Part of my point here is listen to experts; not actors, bloggers, VLOGGERS, or even necessarily politicians for advise on Covid. Consult experts.</p><p>The Diamond and Silk twitter account (which was reinstated from dispelling misinformation about Covid-19) has a donation page. No details about where those funds go other than funds go to Silk--her remaining sister. My condolences to Ms. Diamond's family.</p><p></p></div>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com2tag:blogger.com,1999:blog-8476235401101578979.post-11730065174641686642022-11-30T07:25:00.005-08:002022-11-30T11:15:29.466-08:00Long Covid Brain Fog is not Fog: It's Brain Damage<p>At my fifth "home" this year as a vagabond moving around as we rented out our home to cover some finances due to Long Covid, I was having my morning coffee with my wife and brother-in-law. Marc started to ask me something. Google Show was playing the morning news before I was to head out for my IVIG infusions and I told Google to politely shut up. Sorry, I exclaimed to him, " I have OCD and ACD." My wife quickly asked, "don't you mean ADD?"</p><p>I quickly retorted, "no I mean ACD." She then asked, "What does that stand for?" Like my late father who succumbed to Dementia this year, I find myself sometimes "making up answers" or explanations to my gaffes. "It's Attention Chronic Deficit," I explained. (Patent Pending.) We all laughed at the exchange--sometimes you have to laugh instead of cry--it's good medicine. </p><p>This is a tough post to write in more ways than one. As someone with Long Covid (famously coined Post Acute Sequalae Covid or PASC by "Saint Fauci,") one of the many symptoms has been labeled as "brain fog." I'll get into the "hard to write" part later, but first let's talk about that term I hate which is Long Covid "brain fog" or ACD.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9dPvh40bnvqb4pUhdY5DfHDVnQi9T4KUrYRuTPY7PbDcnarT-tMq9TOk1Djh0C0ZmV1_CXRhirwrileyBq-aOVtwgKXS7FldNX3uV3cGPuWrTv82OvrAPKqWGiugDShULvrs0k1I3WwHTuJMZpzekh8QhY5WLRghMWiUQW2zTYO-tasHgJ30hbXnGRA/s1920/long-covid-brain-damage-SBM.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9dPvh40bnvqb4pUhdY5DfHDVnQi9T4KUrYRuTPY7PbDcnarT-tMq9TOk1Djh0C0ZmV1_CXRhirwrileyBq-aOVtwgKXS7FldNX3uV3cGPuWrTv82OvrAPKqWGiugDShULvrs0k1I3WwHTuJMZpzekh8QhY5WLRghMWiUQW2zTYO-tasHgJ30hbXnGRA/w360-h640/long-covid-brain-damage-SBM.jpg" width="360" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div>Brain fog sounds like describing a compound leg fracture as a "lower body injury" in the NHL. Brain fog sounds like you're just a bit fuzzy and has connotations of a temporary condition. The later is yet to be determined. This is a good place for me to point out that I'm not a Dr, nor a Long Covid expert other than the fact that I've been living with it for 34 months. I'm certainly more of an expert than the ER doctor in October that asked me "what is Long Covid?"<p></p><p>Another thing I consistently point out (as relayed from world experts) is that we are still very much in the "research phase" of Long Covid. Having said that, there are recent studies that would indicate that "Timmy's little brain boo-boo" is not something to be taken lightly. </p><p>Just as there's a cascade of symptoms, there have been a cascade of medical studies on the impact on the brain. This morning, Carlos McCone (great <a href="https://twitter.com/loscharlos/status/1597801664810954752">Twitter follow </a>for #pwLC) posted a <a href="https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both">WebMD article</a> that stated, "People who got COVID-19 were <b>twice as likely</b> to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID."</p><p>Great...the gift that keeps on giving. </p><p>From the <a href="https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/">Medical Journal of Australia</a> they state, "more proof COVID is a multi-system cluster bomb"--"bomb" sounds a bit more serious than fog to me. The most consistent description I get on Long Covid is that is a post-viral condition that attacks multiple systems in the body so "multi-system is right."</p><p>Phd candidate Stacey Rowe (and her MJA colleagues) go on to say;</p><p><span style="font-size: medium;"><i>“You are 15 times more likely to acquire myocarditis requiring hospitalizations following COVID-19 compared with beforehand."</i></span></p><p><span style="font-size: medium;"><i>“The incidence of hospitalisation with cerebral infarction was twice as high after COVID-19 onset as during the baseline period..Other investigators...have estimated the risk of stroke to be 2–13 times as high for people with COVID-19.”</i></span></p><p>Clinical epidemiologist <a href="https://twitter.com/zalaly">Ziyad Al-Aly, MD</a>, clinical at Washington University shared findings published <a href="https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/">Sept. 22 in Nature Medicine</a>; "The results show the devastating long-term effects of COVID-19. These are part and parcel of long COVID. The virus is not always as benign as some people think it is...Memory problems — colloquially called brain fog — are one of the most common brain-related, long-COVID symptoms. Compared with those in the control groups, people who contracted the virus were at a 77% increased risk of developing memory problems."</p><p>One of my (future blog post? #longcovid superstars,) <a href="https://twitter.com/WesElyMD">Dr. Wes Ely</a> of Vanderbilt has an excellent series of TikTok videos (sorry...one social channel I haven't globbed onto,) and recently talked about how micro clots (essentially) cause brain fog (there's that term I hate again.) (Video post <a href="https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658">HERE</a>.) One of my biomarker panels from <a href="https://rthm.com/">RTHM </a>(out of California) indicates I have vascular inflammation (sCD40L nearly 4x higher than it should be and VEGF over 4x.) Can you say "Maxi" micro clots?</p><p>But again "the jury is still out" on diagnosis and treatment as Dr. Ely shares in his video, "Why not just give them blood thinners? How to treat this is still up for grabs. We're trying..large controlled trials...talk to your doctor." Three other "gold standards to follow the micro clot topic are <a href="http://dbkgroup.org/publications/">Professor Doug Kell</a>, <a href="https://twitter.com/resiapretorius">Professor Resia Pretorius</a>, and <a href="https://twitter.com/elisaperego78">Dr. Elisa Perego</a>. Professor Pretorius <a href="https://twitter.com/resiapretorius/status/1592949463366389763">recently visited</a> with <a href="https://twitter.com/PutrinoLab">David Putrino</a> from <a href="https://www.putrinolab.net/">Putrino labs</a> and discussed this topic (and I'm hoping) how to transform research-centric testing to be more ubiquitous. You can't exactly stroll down to <a href="https://www.labcorp.com/">LabCorp </a>and request the "Fluorescence microscopy" micro clot testing. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="678" data-original-width="976" height="278" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTnlOpvX4cGwbAoXAl2EZj5Ruer4XhDOb3J1ztbySSQGGKF90wtGwp_IGsb5C_egbcefBFLmO4K4iP6S5obQJ1ZK2HwY0HvUThoJ6deQ__HsU1cFU0MwAhCh3bfCr0Td6k2IICpDM0O8yPcjKncrxs0MVRU6OW9Jw_1sQZ9fjdC2TQShfbMbOaEkfVxg/w400-h278/wes-ely-microclots.jpg" width="400" /></a></div><br />If you're wondering how it may present itself; with me, I can best explain with a variety of examples--many I've chronicled here or I put in my phone to try and remember later. <p></p><p>Some symptoms present themself physically. My equilibrium is off using rails more often, sitting in the shower, and falling a few times--the later resulting in a broken bone in my foot and a couple contusions.</p><p>Dating back to my <a href="https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614">Today Show</a> interview in 2021, I talked about picking out dinner to be picked up for the night. I recommended the restaurant (I can't remember the name as I type,) we ordered and I agreed to pick it up. Ten minutes away from the house, I pulled over to look at my Google search to remember the name and location of where I was going. </p><p>My wife has learned to recognize there are awkward pauses to questions she asks--sometimes out of habit (as she has spent twenty years with my "old self",) she quickly restates or asks the question again. I often abruptly snap, "I'm thinking!" Not something I'm proud of.</p><p>Just as my symptoms have "morphed" over the months, weeks, and sometimes within a day, my cognition issues have seemingly got worse. The latest is word jumbling; almost drunk I asked my wife to "chest the chicken (meaning check.) I will also lose words to things I should know. Similar meal exchange, I pointed to my wife's sandwich and asked, "how is your_____?" Drawing a blank she completed the sentence with "prosuitto." Of course I can't pronounce the word either. </p><p>My mental gaffes and gaps mirror <a href="https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/">Professor Louise Cummings recent Long Covid Survey</a> including "I struggle to find words, I forget what I wanted to say, and mix words up." Go <a href="https://longcovid19.wixsite.com/survey">HERE </a>to take the survey yourself if you have Long Covid and feel you are struggling with "Brain Fog."</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKmDo59WGQokQW_Aovf0aW9PJ0HU8EcL5zbqGTUPYUvJKqZ9-6dqy_U8DSelZqu6XXy4p0nt5BaWHokIFSRhnuEyLDUO4T13te8MR_8_egGU4SPqcHaAtpUUSSjB6mZ8tNmk-DITYG9-OBBWiN3k2uLtE9dMNxn7R9qWqZVJOrbIvEmIGoD39Zohn2mQ/s2048/FitYTF1UcAE60Es.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="2048" data-original-width="946" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKmDo59WGQokQW_Aovf0aW9PJ0HU8EcL5zbqGTUPYUvJKqZ9-6dqy_U8DSelZqu6XXy4p0nt5BaWHokIFSRhnuEyLDUO4T13te8MR_8_egGU4SPqcHaAtpUUSSjB6mZ8tNmk-DITYG9-OBBWiN3k2uLtE9dMNxn7R9qWqZVJOrbIvEmIGoD39Zohn2mQ/w296-h640/FitYTF1UcAE60Es.jpg" width="296" /></a></div><p>My social activities are curtailed significantly but did decide to attend one of my closest friend's daughter's wedding this last summer. I figured, I could rest all day, sit through a short ceremony, have dinner and skip out on all the dancing and late night drinking. Alcohol and Long Covid don't mix. </p><p>The month before was the bridal shower. I picked up my wife and told my very good friend that I "didn't recognize your son" as he'd grown a beard and was wearing a hat. It was his brother. I knew this but jumbled the exchange. </p><p>The night before the wedding I ran into the father of the bride's sister-in-law. At the wedding the next day, I told her "I'm sorry we didn't get a chance to chat last night." She looked at me very confused, and said, "we talked last night." I brushed it off just as my dad often did when explaining lapses in memory due to his dementia.</p><p>On my disability journey, I had to go in for what I thought was a psychology interview--I freaked out thinking this sure smells like the gas from "gaslighting." The first 30-45 minutes was a function interview--can I bathe, what can I do around the house, and I said that mental activities that are intense (like my former job) I can only handle about 90 minutes worth before a symptom tsunami. I'd then have to take a nap that afternoon and likely call in sick the next day--in other words, "super employable."</p><p>What came next was a cognition test--in all it took about four hours. Think Trump and "person, woman, man, camera, TV." Both were pure torture.</p><p>I consulted my notes I'd sent off to my disability legal team on what I recalled from the session. Looking back, most of my notes were around my function, but the bulk of the four hours of "Helga's House of Pain" was the (<a href="https://www.pearsonassessments.com/">Pearson</a>?) cognitive test. Some shape puzzles, recalling details of a story, and as we neared the end, word combinations.</p><p>For some reason, the one I seemed to recall the most that day was woman/zoo. Perhaps because it was such a nonsensical combination of words. Other word combinations, I could tell I was guessing most of the time and guessing wrong. I also talking about reading and the fact that I've given up on novel/pleasure reading as I would have to read and re-read pages several times without recollection. I can't remember the name of the book I last tried to read. </p><p>I'd add that many of the articles and studies I've mentioned above, I have to either skim, certainly re-read, or jump to the conclusion section as Long Covid is a complex topic.</p><p>Brain Fog has been labeled (but couldn't find the reference) as "rapid dementia." In my case, I've seen a decline from '20 to '21 to '22. It's especially hard to hear that as my dad (preceded by the death of my mother this year) died from Dementia after a bout with (ironically) Covid-19. I'm not saying my dad died of Covid-19 and as harsh as it sounds, his Dementia had advanced to the point where he didn't have much quality of life. I miss them both as they worried about me until they died.</p><p>Now getting to the "hard part" of trying to put thoughts on (virtual) paper. As my cognitive issues seem worst at the 34 month mark. It's humbling and damning to one's self worth to admit you have issues with your brain. It's also hard to write as "the internet is forever." My wife (God bless her) reminds me of this often and I used to hammer that into my kids as they were growing up.</p><p>I still have hopes of returning to some semblance of my former self. The "brain fog" is one of those symptoms that I fear would prevent me from returning to any meaningful employment--that also assumes other disabling symptoms also go away. I "drift" into that fantasy future and imagine the hiring manager or HR manager Googling, "Ty Godwin." The results would yield my very public journey; my <a href="https://www.linkedin.com/feed/">LinkedIn profile</a>, <a href="https://www.instagram.com/seekingbostonmarathon/">Instagram</a>, <a href="https://twitter.com/seeksboston26mi">twitter</a>, this blog, Facebook, and <a href="https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614">Today Show Interview</a> back in 2021.</p><p>My "previous life" was in the telecommunications and software industry as a software sales executive. I sold complex solutions including analytics and cloud compute. This was a former art major in college so much of what I sold, I had to learn--with lots of reading. I'd built an amazing career but haven't worked in almost two years--I tried to work through illness for much of 2020 before going on disability and becoming unemployed.</p><p>Back to that nirvana of returning to my former self and going back to work, my manifesto doesn't exactly make me a desired employee so that's the final reason that this post is hard.</p><p>Trying to wrap this winding foggy journey post up, why would I share this? One is for awareness and advocacy. Many believe that Covid isn't real or no more dangerous than the flu. This is potentially a deadly misconception. Secondly is writing about this for me is therapy. Third related to the first is that I hope that awareness and my advocacy can lead to change. </p><p>There was a sliver of good news in terms of research in the USA (which lags the world on research) with <a href="https://patientresearchcovid19.com/">Patient Led Research </a>announcing this month, "The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions." This is a great start as the <a href="https://www.nih.gov/">NIH</a> has bumbled (IMHO) the $B in funding notably passing on the micro clot research request from Putrino Labs.</p><p style="text-align: center;">
<iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/zJw_AY5MOGc" title="YouTube video player" width="560"></iframe> </p><p style="text-align: left;">Aside from research I go into greater detail on what changes need to happen in my recent <a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">blog </a>as our Government seems to have "moved on" and is ignoring the Long Covid "tsunami" that's followed Covid-19. Thanks for reading, and keep advocating.</p><p style="text-align: left;"><br /></p>
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<p><i>References:</i></p><p>Is it Long COVID, or Dementia, or Both? WebMD</p><p><a href="https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both">https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both</a></p><p>More proof COVID is a multi-system cluster bomb: Insight + Powered by AMPCo: </p><p><a href="https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/">https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/</a></p><p>Professor Kell Bioanalytical Sciences Group Publications: (with Multiple contributions from Resia Pretorius) </p><p><a href="http://dbkgroup.org/publications/">http://dbkgroup.org/publications/</a></p><p>COVID-19 infections increase risk of long-term brain problems</p><p>Washington University School of Medicine in St. Louis, Kristina Sauerwein, Ziyad Al-Aly, MD, Clinical epidemiologist at Washington University</p><p><a href="https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/">https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/</a></p><p>Dr. Wes Ely Tiktok (Long Covid Videos and Bio)</p><p><a href="https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658">https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658</a></p><p><a href="https://medicine.vumc.org/person/e-wesley-ely-md">https://medicine.vumc.org/person/e-wesley-ely-md</a></p><p>Man sick with COVID-19 for 14 months details struggle with brain fog and more: Meet Ty Godwin, a man who has experienced ongoing COVID-19 symptoms for over a year.</p><p>Tom Costello, NBC News Correspondent, Chrissy Callahan, Journalist Today Show</p><p><a href="https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614">https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614</a></p><p>Long COVID: The impact on language and communication: Professor Louise Cummings, Hong Kong Polytechnic University</p><p><a href="https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/">https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/</a></p><p> </p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com1tag:blogger.com,1999:blog-8476235401101578979.post-70659933903044190952022-11-23T02:52:00.003-08:002022-11-23T02:52:54.677-08:00Thanksgiving Toast Cheat Sheet: 2022 Long Covid Edition<p>Once again, it's that time of year in the United States when families gather for Thanksgiving. For those of us with Long Covid, it potentially brings a layer of anxiety as getting another round of 'the Rona" is not what any of us want for the Holidays. Many may avoid a gathering and others may have family that didn't vax, don't mask, and potentially traveled home for the holidays--all this raising the risk of another infection.</p><p>Aside from the Covid fears, there's also the subtle nuances of family dynamics. Uncle "Ed" who smells of Old Spice cologne and cheap bourbon wanting to nuzzle his cute nieces and nephews with his bristly 10AM shadow. Then comes the time during the dinner when someone prompts the Thanksgiving toast or "what are you thankful for" ritual. </p><p>In case you have anxiety over all this, I present to you, the "Thanksgiving Toast Cheat Sheet: 2022 Long Covid Editon" to help should the moment or words not present itself.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDB057BCpCnPL8R5vt2d9ETrL0N40Ib44EQFIRVdUJVvgbxEU8eE9lm2__KtTLAEQfgo8rjFvlCohwzMRnD5YhhG7zFUE19PJKXZFGnEg1bwotmInbhZP1f0EueaSCWJYvMYmSaEA3v6xgn79cKms0dfEU1Z_CFxsIl5TuKodEThBBmg40oWB-4hjGyQ/s1200/TURKEY-THANKS-SBM-2022-v2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="650" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDB057BCpCnPL8R5vt2d9ETrL0N40Ib44EQFIRVdUJVvgbxEU8eE9lm2__KtTLAEQfgo8rjFvlCohwzMRnD5YhhG7zFUE19PJKXZFGnEg1bwotmInbhZP1f0EueaSCWJYvMYmSaEA3v6xgn79cKms0dfEU1Z_CFxsIl5TuKodEThBBmg40oWB-4hjGyQ/s16000/TURKEY-THANKS-SBM-2022-v2.jpg" /></a></div><br /><p><br /></p>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-58515661420556642982022-11-16T09:21:00.002-08:002022-11-16T09:31:43.941-08:00Dolly Parton. Please Help Long Covid!<p>#DollyHelpLongCovid</p><p>Well hello Dolly. The word is spreading like wildfire on the internet that Jeff Bezos is giving you $100M for charity. I know you likely already have your designated charities. Please, please consider for a moment the Long Covid crisis. Upwards to 20-33M Americans are suffering from long-term damage from Covid; known as post-acute sequalae Covid (PASC) or "Long Covid." This is a global crisis, and due to the political "ping-pong" in our country, our government has dismissed this crisis.<br /></p><p>What is Long Covid? It's a post viral illness that attacks multiple organs in the body including vascular, heart, lung, and brain. The symptoms can be maddening and endless including neuropathy, body spasms, tinnitus, vascular inflammation, brain fog (a polite way of saying brain damage,) and heart failure. In many cases it disables the immune system and wreaks inflammation havoc.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE5ErLGbIrDE2_OSn8APSU_ZlmCuduzgB42X-z6p2euN0ZvRD-VsmALfAK8AzJS3-8EHWAuCU5v-fjE5E8QbeIeXOvJGr9KAXEFTzhdtMf3JarWcRsgoBfHNz9VzqhIm053WJE5x-c8PKIXqU9R8K0wfuepUocfheJjNr2HPZ4HHr7BPz98586fFHipw/s1920/Nine-to-Five-Seeking-Boston-Marathon.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1920" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE5ErLGbIrDE2_OSn8APSU_ZlmCuduzgB42X-z6p2euN0ZvRD-VsmALfAK8AzJS3-8EHWAuCU5v-fjE5E8QbeIeXOvJGr9KAXEFTzhdtMf3JarWcRsgoBfHNz9VzqhIm053WJE5x-c8PKIXqU9R8K0wfuepUocfheJjNr2HPZ4HHr7BPz98586fFHipw/w360-h640/Nine-to-Five-Seeking-Boston-Marathon.jpg" width="360" /></a></div>Trump mocked Covid-19, and now Biden has <a href="https://www.politico.com/news/2022/09/18/joe-biden-pandemic-60-minutes-00057423">deemed the pandemic "over."</a> It's not over. I used to run marathons and had a successful career in software. I have been sick for almost three years and haven't worked in two years. Our (USA) country's Social Security System is broken. Most are denied (upwards to 70-80%) claims and the appeal process takes months (mine has been in process over a year.)<p></p><p>I (difficult to say) believe my situation is better than most. My wife owns a small business and we've rented out our home over the last year. Others are losing their homes. Imagine those without resources to hire a lawyer to navigate this process? How do you pay rent or pay for groceries when you can't work while waiting over a year for a "no" from Social Security? Navigating this process is a "<a href="http://www.seekingbostonmarathon.com/2022/08/navigating-choppy-waters-of-long-covid.html">nightmare</a>."</p><p>This is NOT just the old or person with pre-existing comorbidities. This affects children and healthy people like I was before getting sick.</p><p>Research is nearly non-existent in the U.S. in terms of funding. The NIH <a href="https://www.reddit.com/r/covidlonghaulers/comments/vzth45/putrino_lab_denied_funding_for_microclots_study/">denied funding</a> to Putrino Labs for the most-likely theory around "microclots." </p><p>There have been<a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html"> three Bills introduced</a> to Congress but they are collecting dust. Our country has turned a "blind eye" to those with Long Covid and it's not unique to the United States (although other countries like Germany and South Africa are ahead of the U.S in terms of research.)</p><p>All of this despair has lead to a <a href="https://time.com/6186429/suicide-long-covid/">high suicide rate </a>among people with Long Covid with the financial despair, loss of identity, and maddening symptoms.</p><p style="text-align: center;">
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So what's the answer? I have detailed my ideas <a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">HERE</a>, but more specifically we need funding. Here are a few of my suggestions;</p><p><a href="https://twitter.com/PutrinoLab">Putrino Labs</a>: a group of scientists lead by David Putrino; clinicians, engineers, artists, and story-tellers with one collective goal: using technology to help people perform better. It doesn't matter if you're recovering from a stroke or preparing for the Olympics, we use technology to build communities, empower, treat and inform. Investing in microclot and other leading theories around Long Covid. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.putrinolab.net/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1810" data-original-width="2444" height="474" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4bvwyle9ReVclqhMmLVjwm3SNIjrIcAYKFKuJmO6MJ3T2QW9InLraYaN8lG4HgxHlKC69Hf0rok00gyOps_Jfx6B8-9diRqWZB2c6F3v-Ja7RWII7t8fP6qD0RdC0n8Ce7vgHIGdcLq1h_QEycgONQTC2xBmNapGCY1e0ASyOKLDVC3lkZZGrO7THQg/w640-h474/putrino-lab.jpg" width="640" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><a href="https://twitter.com/MEActNet">#</a><a href="https://twitter.com/MEActNet">MEActionNetwork: </a> A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #pwME #MillionsMissing Donate: <a href="http://meaction.net/donate/">http://meaction.net/donate/</a> Now expanded to fight for those with Long Covid. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.meaction.net/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="149" data-original-width="339" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNEMAQKGWzyTHPD4nM0lukB0ehdXoFZNIEQ_506Z1RnekYFNVmu1VKm21Z89ncZnpDVrYuwus2SR4tlpRyK_AqOiozRV2FZdn5jsgMeV2vCg6n4RnqUuUBqpwBoynhzp5-U8b8NPliUYfq-o7SVdTM9BTQ7802qnlpk9X7ytIXm2fS545X4RNb_0bYkw/w640-h282/me%20action.jpg" width="640" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><a href="https://twitter.com/itsbodypolitic">Body Politic: </a>Grassroots health justice org at the forefront of the patient-led #LongCovid movement. Home of Body Politic COVID-19 Support Group. <a href="mailto:Info@wearebodypolitic.com">Info@wearebodypolitic.com</a></p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.wearebodypolitic.com/" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="500" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK8Nq1nxNQGgjvD1iGAz5bhmUd7tV4Us4yG7TTSi5YUyWHJFLes370BrFBsaOuyb1oymMHzNwv-mbHZ54h-tz4IwFbG6L9aZwH41Y-lJBdzGHn1_UjkF0qAej0ryKcEY7kp0r4SgAmOVaik8s0S_wO_SUHz8H6yURqdTp0lyoRNZ4duX7dr6IDLaTwhw/w640-h640/body%20politic.png" width="640" /></a></div><br /><p><br /></p><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><a href="https://twitter.com/LongCovidSOS">Long Covid SOS</a>: Grassroots health justice org at the forefront of the patient-led #LongCovid movement. Home of Body Politic COVID-19 Support Group. <a href="mailto:Info@wearebodypolitic.com">Info@wearebodypolitic.com</a></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwir8kDKr-I1F3vccBADoJ_WIwuQ7_AaLQEXS0OkbouyRnEsD17DltPaw7evv4w_6nal_lVtVET106v_Jl5tqtxpG2-Nd3wq5agg-SmxlNCsrTbvdg0eg5ZjW8-aK16HClZBdLqCUUZQD9y2mMrMVIJH8LKNuAVlQopwrPWygT8LOtOTSVkEgE1x9OYw/s484/long-covid-sos.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="136" data-original-width="484" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwir8kDKr-I1F3vccBADoJ_WIwuQ7_AaLQEXS0OkbouyRnEsD17DltPaw7evv4w_6nal_lVtVET106v_Jl5tqtxpG2-Nd3wq5agg-SmxlNCsrTbvdg0eg5ZjW8-aK16HClZBdLqCUUZQD9y2mMrMVIJH8LKNuAVlQopwrPWygT8LOtOTSVkEgE1x9OYw/w640-h180/long-covid-sos.jpg" width="640" /></a></div><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><a href="https://twitter.com/BloomingMagOrg">BloomingMagOrg</a>: #MentalHealth Advocacy 501(c)(3) nonprofit organization for people struggling with Long Covid. Provides direct cash payments to those in need. Need Support? Join us at <a href="http://BloomingMagnoliaNetwork.com">http://BloomingMagnoliaNetwork.com</a></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="http://BloomingMagnoliaNetwork.com" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="465" data-original-width="828" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghuEIou6Q6esUzl4IKXgiuIfl4NN3NLvVZWOrO1kK97PpMNr-q0ZVSRmQ6YRAoBuxoe5Pk4QRxHAg5K4zzVsKnSTwVUr3w1TX5fHYLAKylSmaBTu1W1SPIS9vFhoHF_aEfAKN6LuEB1ubDYf3iWxD92b0Ict4gho_89KUYjPn_19Qcdk4CVCmPwD8yeA/w640-h360/237921088_276667320933850_6347634944758942055_n.png" width="640" /></a></div><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Love you Dolly. Hope you would consider helping those around the world with #longcovid. </div><div><br /></div><div>#DollyHelpLongCovid </div><div><br /></div>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-61047329240528107842022-11-02T12:06:00.002-07:002022-11-02T12:21:51.821-07:00Goodbye Julie Julia<p>This one's tough. Last night, word started coming across the twitter feed on my phone that <a href="https://www.nytimes.com/2022/11/01/dining/julie-powell-dead.html">Julie Powell died unexpectedly</a> at the young age of 49 due to cardiac arrest. I immediately wondered if it might be Covid-related.</p><p>I am what you'd call an unexpected fan of Julie's story. While I have a standard list of movies that I stop and watch while "channel surfing" (with the likes of <i>Shawshank Redemption </i>and <i>Jaws,</i>) my wife has a similar list that includes anything Nancy Meyer, of course <i>The Devil Wears Prada</i>, and the 2009 movie <i><a href="https://www.imdb.com/title/tt1135503/">Julie and Julia</a>. </i>I had an atypical bond with Amy Adams character, Julie Powell as I am also a blogger and envied her meteoric rise. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaxCpMBxw-bmPciI9V7ctdPq4B2tj10wXBEZsNTnoPamINIB2IeIFq9zYAhUsl-7358RVfR0H3xvNh4e6OH7pWI8ax9zi7qDeeayKgfMZjbjvz7S-eLnQRPBM480UZDfez95DUY5K5bUIg7C_KczRsfNadAyYxvUZ6Pdj65FIw8tj2LW8dvtjfJRtZw/s2048/julie%20powell%20NYT.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2038" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaxCpMBxw-bmPciI9V7ctdPq4B2tj10wXBEZsNTnoPamINIB2IeIFq9zYAhUsl-7358RVfR0H3xvNh4e6OH7pWI8ax9zi7qDeeayKgfMZjbjvz7S-eLnQRPBM480UZDfez95DUY5K5bUIg7C_KczRsfNadAyYxvUZ6Pdj65FIw8tj2LW8dvtjfJRtZw/w398-h400/julie%20powell%20NYT.jpg" width="398" /></a></div><br />Of course, every time we watched the film, I'd inevitably break out Meryl Streep's "beef bourguignon" followed by Dan Aykroyd's SNL "save the liver" skit also shown in the film. <p></p><p>As the steroids used for my IVIG infusions for my Long Covid journey once again wreaked havoc with my sleep last night, I reached for my phone in darkness at 4AM and started to see Julie's connection with my online Long Covid community. A day before her death, she tweeted about her "black hairy tongue" and that her doctor dismissed it and said it would go away.<i> (I'll preface the above and below with the fact that I'm not a doctor nor have I intimately followed her Covid journey or symptoms.) </i>As <a href="https://twitter.com/indyfromspace/status/1587610874910543875">Dr. Sarah Parcak tweeted</a>, </p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><p style="text-align: left;"><i>"So, what you don't read in the NYT obit: beloved author Julie Powell had covid 6 weeks ago (she tweeted a bunch about it). There are countless men and women getting heart attacks, strokes, and blood clots following their infections. The covid public health disaster is infinite."</i></p></blockquote><p>I've always stated that mortality should be the number one focus of Covid, but we're now seeing that "tsunami effect" that I keep talking about. That's the people suffering with what seems to be (in many cases like mine) permanent damage from Covid due to <a href="https://www.yalemedicine.org/conditions/long-covid-post-acute-sequelae-of-sars-cov-2-infection-pasc">PASC </a>(post-acute sequelae of COVID-19) or "Long Covid." We are now seeing PASC go from debilitating to deadly. </p><p>My (damaged) heart goes out to Julie's family as they're reconciling her death and won't make this about me, but I will make it about that tsunami that our government and society is ignoring. We have short attention spans in this country and as I've said here, the country has suffered from "story fatigue" on Covid just as we have with the Russian invasion of Ukraine. </p><p>One of my more graphic and least watched <a href="https://www.youtube.com/watch?v=Ur9pmeV_E4k">YouTube video</a> blogs used the movie <i>Alien </i>as a metaphor for the madness brewing in my chest in the "chest burster scene." Not far from the truth as I've had many a night with my chest (in the area of my heart) going mad. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.youtube.com/watch?v=Ur9pmeV_E4k" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2833" data-original-width="6667" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPP6fFFzUViP89y1Jfh1rD53TukP73L7AZpYCnuTeJYTbe4UmRR62H6jCTqcIaCudqCrCdJl52_bwyObbm5_yvky6qMM352XrVW2ymZVVVIfGte6nNq80e-cS4sECmJ39loANVMY52z4bIPXtucsqpRR-SIxpFFLxTAJOOWCw_h8c8mMIZViXkB16W2Q/w640-h272/covid-alien-SBM-scene-nine.jpg" width="640" /></a></div><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>Exacerbating the issue was Joe Biden infamously going on <a href="https://www.cbsnews.com/video/president-biden-the-pandemic-is-over-60-minutes/">60 minutes</a> stating the "Pandemic is over....we still have a problem with Covid" as he walked through a Detroit Auto Show. He went on to say, "everybody seem to be in pretty good shape." I have thrown most of my political blame on the deranged orange "circus peanut" (see <a href="http://www.seekingbostonmarathon.com/2021/07/mad-vax.html">Mad Vax post</a>) but Joe now shares equally in the blame for the apathy around Covid and Long Covid. </p><p>Despite the obvious tragedy, Julie Powell's tweet from the day before struck a familiar chord with me. I have been (almost to a fault) been relentless in my treatment and have aligned myself with some of the best in this country; including five trips to <a href="https://www.mayoclinic.org/">Mayo Clinic</a>, my new Long Covid clinic (<a href="https://rthm.com/">RTHM</a>) in California and Oregon, and locally at <a href="https://www.nationaljewish.org/home">National Jewish Health</a> and <a href="https://www.uchealth.org/">UC Health</a>.</p><p>Despite that incredible team, we still are in a "research phase" of Long Covid and I've had more than my share of doctors pulling from the pre-Covid shelf of medical books and diagnoses. I can distinctly recall sitting on the white paper topped examination table and telling a lung doctor that it felt like "organs are cooking inside my chest" dating back to 2020. The response was facial expressions of befuddlement and dismissal--just like Julie's black hairy tongue.</p><p>My journey early on was marked with eliminating everything other than Covid or Long Covid; in part due to the fact that I'm part of the "first wave" club being sick now for 33 months (January '20.) Part of the follow-up for that "burning" description were "elimination" tests including gastrointestinal tests including a <a href="https://www.mayoclinic.org/diseases-conditions/gerd/diagnosis-treatment/drc-20361959">GERD </a>test ruling out acid reflux. This isn't a reaction to a spicy burrito. I have vascular inflammation and suspect inflammation of the heart. More recently I had a doctor ask if my chest spasms were hiccups. I'll repeat, I know what a fart is, and I know what a hiccup is and my spasms are neither. </p><p>My anxiety was already at a peak as I'd received my latest "biomarker" panel yesterday from <a href="https://theradiancediagnostics.com/portfolio/covid-19-long-hauler-test/">Radiance Diagnostics</a> ordered by RTHM. Not surprised, my T-Cells were high and other monocytes were ridiculously low. This after other biomarker tests have fundamentally shown my immune system is "shot" and my inflammation is "off the charts." Googling at 4AM is not a good idea as my nonclassical (LH [CD14LO,CD16+]) monocytes were 2.1 with a "standard range" of 25.5 to 40. </p><p style="text-align: center;">
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My Google search revealed an image showing arrows pointing to my heart so I turned the screen dark. Not a good idea. Short of being a hypochondriac, my "bizarre" symptoms don't stop with my chest. I'm sure related to my broken immune system, ordinary cuts take longer to heal. I have odd "blotches" on my skin, and equally alarming is my continued cognition issues. </p><p>Not making this about me with Julie's tragic death, I'm not alone as I'm one of upwards of 33M Americans with Long Covid. Sounds absolutely shitty to say, but perhaps some good can come out of this. I don't know what it will take to wake up our government and even our deaf tone CDC and Director Wollensky to wake the fuck up. We don't need more deaths to shine a light on this topic, but perhaps more famous names need to take the story to the Hill like <a href="https://people.com/music/dave-navarro-details-his-experience-with-long-haul-covid/">Dave Navarro (from Jane's Addiction) who also suffers from Long Covid. </a></p><p>Rochelle Wallensky's latest posturing (prior to her coming down with Covid) talked about "washing hands" to help thwart the dangers of respiratory dangers including RSV and Covid-19. No mention of masking. Herd immunity is an absolute joke, yet I'm also not naïve in that a reversal on masking recommendations or policy won't happen. </p><p>The "bad idea" of Googling yielded an image of that particular monocyte showing it's attention to the heart. I've posted <a href="https://twitter.com/weselymd">Dr. Wes Ely'</a>s <a href="https://www.instagram.com/reel/Ci_ZwqNPD3_/?igshid=YmMyMTA2M2Y=">TikTok video </a>describing the very real impact on the brain. </p><p>Not ironic, two other "Long Covid Superstars," <a href="https://twitter.com/PutrinoLab/status/1587473853227433986">Resia Pretorius and David Putrino are meeting this week </a>at the <a href="https://twitter.com/IcahnMountSinai">Icahn School of Medicine at Mount Sinai t</a>o share their studies and "hopefully" bring more ubiquitous testing around "microclots" as the leading theory or culprit in this largely "stealth" and now as we're seeing deadly culprit with Long Covid.</p><p>As I learned from years of sales meetings in my previous (what now seems end of) career, there would always be a final slide on problems or what needs to be fixed. The best sales leaders always added the "what needs to be done" versus just complaining. I went into my thoughts in much greater detail (<a href="http://www.seekingbostonmarathon.com/2022/09/dear-director-walensky-please-do.html">HERE</a>) but funding, research, ubiquity (and affordable) long Covid clinics, education of the medical community, and Social Security reform are desperately needed. </p><p>Dark Brandon needs to go darker and put the "paddle cards" on the three dead House Bills that are collecting dust and frankly don't come close to addressing the above before more people like me meet their own literal defibrillator paddles.</p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-52474616183030631412022-09-28T15:38:00.005-07:002022-10-02T09:32:32.752-07:00Evergreen Rose<p>Some stories seem made up. This is not one of them. </p><p>As you've followed my journey, this year has certainly been a "hold my beer" nine months having lost both my parents in February and May. With many wanting to celebrate both of their lives, we had their Celebration's of Life in July and August. Both were grand send-offs. After the laughs, cries, people going back to work, and flying home my wife and I were living in my mother's Estate home. Marlene lived the previous 17 years on Tappy Toorie Circle; only one of three homes I'd also lived in over our combined lives.</p><p style="text-align: center;">
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Then there was the matter of the estate. For the most part, it's been a labor of love to slowly go through boxes, drawers and file cabinets bit-by-bit with a lot of help from the family. My mom was a sentimental one so we've come across letters I wrote to her in college, grade school art projects and my daughter and nieces got a huge laugh over finding a photo of my mom with bra, panties, and a cigarette. </p><p>I intentionally avoided looking at that one.</p><p>Overall, let's just say there was a LOT of stuff to go through. Everyone has walked away with gems to remind them for hopefully generations to come of our beloved mother, Marlene. </p><p>Our cousin Dede (and her friend and sidekick Roberta) manage estate sales for a living and knocked out a TON of stuff in an Estate sale in July after sentimental items were handed out. Several boxes of mementos remained stacked neatly along a basement well. Among the boxes are countless Kodak photos in photo albums--for you kids out there, they used to print photos on actual paper; not simply taken, viewed, and deleted on your phone.</p><p>A large row of boxes and garbage bags lined the garage and a corner of the basement. Enough for another giant garage or estate sale, but as we're preparing to put her house on the market, time is running out so ads went up again on nextdoor, Facebook Marketplace, and Craigslist advertising "Estate Sale Leftovers For Free."</p><p>That brought on people that only wanted to only take picture frames or the woman who said she could haul off as much as she could fit in a Honda Civic--not much. Then one inquiry caught my attention. A woman was getting out of an abusive relationship and was willing to come pick up what was left in the basement. I was intent on an "all or nothing" as time is not our friend (listing the house in October,) and it's exhausting to think of going through more boxes. (Fortunately, I haven't had to do the manual labor part.)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6Opu4q4RHNCtHgjGN4huul_WluHPf2CG5SqGa-cfT5HMSMTyhA0AqOsY4lGJoQaMV3IOra_X-eZB-69dG0KC7Q7-CQWBAQFSDOpuTu5OpFVpHbM4r7GHV3fNCNejnc3mX77mcoZQg5CiDPZlCsDyaDQ4PP16rTGNHLXLYWcelf9EeJFplE_KJ5FjHWw/s500/309370485_10224969104033855_4676455102842539650_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="375" data-original-width="500" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6Opu4q4RHNCtHgjGN4huul_WluHPf2CG5SqGa-cfT5HMSMTyhA0AqOsY4lGJoQaMV3IOra_X-eZB-69dG0KC7Q7-CQWBAQFSDOpuTu5OpFVpHbM4r7GHV3fNCNejnc3mX77mcoZQg5CiDPZlCsDyaDQ4PP16rTGNHLXLYWcelf9EeJFplE_KJ5FjHWw/w400-h300/309370485_10224969104033855_4676455102842539650_n.jpg" width="400" /></a></div><br /><p></p><p>We booked an appointment on a weeknight as the Fall sun was setting early. Indeed her car was bigger than a Honda Civic. What struck me (and I certainly didn't pry beyond her nextdoor response) was how could someone abuse this woman? She was about the same age as my daughter and you couldn't wipe the smile off her face as she shared that she was sleeping on a futon. My twenty year old self tried that, and it's the worst night of sleep you can get. She thanked us profusely and offered to pay us. I insisted she "pay it forward" and that she was helping us by hauling it off.</p><p>I felt good going to sleep knowing we'd helped someone out and that a big item was "checked off the list." I texted the family her story and everyone felt good that our mother's cherished items of clothing, kitchenware, and odds and ends had a happy "next chapter" we'll call it.</p><p>During my morning Nespresso, I open up my email today and get my tenth? thank you from the young woman. I'd forgot that within all the boxes was portions of the tableware we ate with as kids growing up and over holidays as we'd return to "Detroit Circle" (previously mentioned daughter Nikki getting fed by her great grandmother Lela in the above YouTube "Camcorder Classics.") </p><p>We aren't talking silverware from the Queen's collection or anything stupid expensive, but priceless in terms of memories. I think it was likely the most common dinnerware for a time in the 70's and 80's. It's origins could be from her mother Lela (I'll ask Aunt Marge) in Evergreen. In fact, I think my grandparents Lela and Lyle had the same set. It may have been bought with S&H green stamps, or from a gas station promotion; when gas stations and banks did such things to lure in customers.</p><p></p><p>Getting back to the young woman's note--it blew me away. She lost her grandmother to Covid this year and wrote; </p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p><i>Good morning! Thank you so beyond much for your help! I have been rolling over how much to thank you. </i></p><p><i>Your gift of rebuilding brought more than just items in need. You included some older silverware. I’m not sure if you knew this, but it’s part of a tea rose set. My grandmother passed away January of this year from COVID, and my grandfather is housing her whole set for me for when I’m able to get it here. She was working very hard to get the matching silverware, and just like that, it fell into my hands. It’s been a moment since I have been able to feel close to her again, and I am so beyond grateful for the kindness you have shown already! The items you have given will be beyond cherished and will build a new generation of memories with them! </i></p></blockquote><p>Are you fricking kidding me? Wow. Tears were shed as I texted the siblings. I drew joy instead of sadness as I know my mom would want the mourning to be over yet remember and reverence to continue. As I was driving home from yet another doctor appointment, I couldn't help but think of the symbolism as the colors are changing in Denver. The rose is a beautiful but fleeting thing in a garden. </p><p>The rose bush in the corner of the patio in our childhood home on Detroit Circle never yielded much (unlike our home on Dexter Street) as it struggled in hard clay soil with no sun. I also remembered Elton John's "English Rose" version of "Candle in the Wind" was played at our Grandma Lela's funeral and again at our mom's celebration of life. I've told my wife, it should also be on my play list when you celebrate me (hopefully a long ways from now.)</p><p>While the original song had no mention of a rose, the Princess Diana "English Rose version did. My mom jokingly referred to herself (half serious I think) as a princess. I'm glad to see part of her silverware will hopefully last for another sixty years when our young recipient's kids and grandkids go through her cherished items</p><p><br /></p><p style="text-align: center;"><i>And it seems to me you lived your life</i></p><p style="text-align: center;"><i>Like a candle in the wind</i></p><p style="text-align: center;"><i>Never fading with the sunset</i></p><p style="text-align: center;"><i>When the rain set in</i></p><p style="text-align: center;"><i>And your footsteps will always fall here</i></p><p style="text-align: center;"><i>Along England's greenest hills</i></p><p style="text-align: center;"><i>Your candle's burned out long before</i></p><p style="text-align: center;"><i>Your legend ever will</i>. </p><p style="text-align: center;"><i>Goodbye (Evergreen's) rose</i></p><p style="text-align: center;"><i>May you ever grow in our hearts</i></p><p style="text-align: center;"><i>You were the grace that placed itself</i></p><p style="text-align: center;"><i>Where lives were torn apart</i></p><p style="text-align: center;"><i>Goodbye England's rose</i></p><p style="text-align: center;"><i>From a country lost without your soul</i></p><p style="text-align: center;"><i>Who'll miss the wings of your compassion</i></p><p style="text-align: center;"><i>More than you'll ever know</i></p>
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<p></p>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-22749313232992025612022-09-16T08:09:00.008-07:002023-05-01T09:52:39.740-07:00Dear Joe & Rochelle, Please Do Something About Long Covid, Anything!<p>After my third day of Long Covid IVIG (Intravenous immune globulin which is a product made up of antibodies given intravenously to boost the immune system) in my second round of infusions (four days for four hours every three weeks,) I was sent to the hospital--one of nearly 200 doctor appointments, lab tests, and ER visits over nearly three years of Long Covid. </p><p>I had a wicked migraine and exacerbated chest pain. As my wife and I tried to explain why I was there (I was in so much pain, my communication was "good not"...more than normal.) I explained the infusions and that I have Long Covid. The ER doctor asked "what's that?"</p><p>You gotta be kidding me? We are approaching three years into this pandemic nightmare's tsunami after effect and we have doctors in a major hospital in a major city asking me what is Long Covid? Wow. Just wow. Not just ignorance, the <a href="https://youtu.be/edIi6hYpUoQ">Theodoric of York, Medieval Barber</a> (Google that) medical community is still doling out CBT (cognitive behavioral therapy--think your way out of it) and GET (graded exercise therapy--exercise your way out of it) which are barbaric approaches to medical conditions. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuHOQnXD_GoVwLcNHBkABzCjotXRBFKPOalyrUoR5j3qOkguEVJ5bUfVb6eNlGGpLTQH7d0FXAe7ApoBHsaApHI3gLvj_8_faKL2WXhsCEuMGmj5OLMp84SmlMKXzRrUMEmw5smZ-fEhIO8ADe1-5BKcS7oWDJbEhBVLqH3Lvqsf83ZUSsnDmFNZGnBQ/s1200/dont-do-it-CDC-Director.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuHOQnXD_GoVwLcNHBkABzCjotXRBFKPOalyrUoR5j3qOkguEVJ5bUfVb6eNlGGpLTQH7d0FXAe7ApoBHsaApHI3gLvj_8_faKL2WXhsCEuMGmj5OLMp84SmlMKXzRrUMEmw5smZ-fEhIO8ADe1-5BKcS7oWDJbEhBVLqH3Lvqsf83ZUSsnDmFNZGnBQ/w400-h400/dont-do-it-CDC-Director.jpg" width="400" /></a></div><br />I covered how "we got here" in my John Oliver-style post called "<a href="http://www.seekingbostonmarathon.com/2021/07/mad-vax.html">Mad Vax</a>" that covered the politics of Covid (largely ignoring, bungling, and diminishing vaccines and masks--going so far as the deranged "Circus Peanut" prez mocking Biden and other dimwits like Lauren Boebert calling them "face diapers." Um...it is an airborne virus and yes, it is far more deadly than the flu.<p></p><p>Unfortunately, the damage was done and (at least in the U.S., but I believe it's rippled throughout the world) and we have a combination of apathy, ignorance, and "story fatigue." Yes, story fatigue--just as the Ukraine war is receiving less press, people are tired of talking about Covid, yet most don't know what Long Covid is.</p><p>I use the word "tsunami" as we went through the pandemic earthquake that is Covid, but we're very much in the thick of dealing with the tsunami after effect that is Long Covid. As much as I rail on the grifter that left the office (with all those nuclear classified documents,) unfortunately the "blue side" of the aisle has done little to none to address the problem...crickets.</p><p>So who's the blame and what can we do?</p><p>There's plenty of blame to go around. POTUS, Speaker Pelosi have barely given "lip service" to Long Covid. Change (and I'm by no means an expert in U.S. Government) starts with Committee Chairs and the House of Representatives. Then we have health agencies; NIH and CDC.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUxKvIuIv55aQGPNNSZUjHW0qw9m_tA-2FaI7_bHnhQWaAEk0ynCp8Ff9HAwjabrBiaoJ1COhX1VBqfGsQHTZZguXS-pPJc04WDBPkN157E6oR_A0od-QLzd4GqrOuNmTzFlZh3JiJUPeUqYoOkSGgGRwNR7c8CHiQGzjXywA8dHaQzPnQwGeQ3XA-1Q/s2078/titani-sbm.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1495" data-original-width="2078" height="288" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUxKvIuIv55aQGPNNSZUjHW0qw9m_tA-2FaI7_bHnhQWaAEk0ynCp8Ff9HAwjabrBiaoJ1COhX1VBqfGsQHTZZguXS-pPJc04WDBPkN157E6oR_A0od-QLzd4GqrOuNmTzFlZh3JiJUPeUqYoOkSGgGRwNR7c8CHiQGzjXywA8dHaQzPnQwGeQ3XA-1Q/w400-h288/titani-sbm.jpg" width="400" /></a></div><br />If you have been living under a rock and don't know what Long Covid is, the technical term is PASC (Post Acute Sequelae Covid.) It's a post-viral persistence that impacts multiple systems of the body.) For me, that includes extreme fatigue, shortness of breath, neuropathy, preload insufficiency of the heart, cognitive issues (commonly referred to as "brain fog" but it certainly feels like rapid Dementia or brain damage,) vasculitis, chest pain, depression, and skin sensitivity among a kaleidoscope of ever-evolving symptoms. <p></p><p>Before I get into who should do what, I should start with what do we want as a "long covid" community. We should be beyond the awareness phase, but a vast majority of those that could help still don't know what it is. I tuned into a hearing on "The Hill" back in July optimistic that our government was engaging on an action plan. I'll save you the time but you can catch it on <a href="https://www.youtube.com/watch?v=g0LX_Eq2_Xs">YouTube</a>, aside from one of my admired champions, (<a href="https://twitter.com/MVGutierrezMD">Dr. Monica Verduzco-Gutierrez</a>) it was a "dud" with the Select Subcommittee on the Coronavirus Crisis, chaired by Rep. James E. Clyburn barely gaining an understanding of Long Covid is.</p><p>What should we do? By no means comprehensive, and would encourage your input in comments below or on <a href="https://twitter.com/seeksboston26mi">Twitter</a> or <a href="https://www.instagram.com/seekingbostonmarathon/">Instagram</a>.</p><p>1) Education of Medical Field--we encounter far too much "gaslighting" of our condition(s) and as my ER example demonstrates, our hospital system is woefully ignorant.</p><p>2) Research! Putrino Labs was disappointed as were many of us that their request for funding of Microclot <a href="https://twitter.com/PutrinoLab/status/1547978525331693571">research was turned down</a> by <a href="https://www.nih.gov/">NIH</a>. We "lag" the world's research with the likes of <a href="https://twitter.com/resiapretorius">Resia Pretorius</a> from South Africa and <a href="https://twitter.com/dbkell">Professor Doug Kell </a>(EU.) Fund research with a $B, not an $M.</p><p>3) Ubiquity of care with Long Covid Clinics. I found two such clinics in the United States; <a href="https://twitter.com/RTHM_Health">RTHM </a>and <a href="https://twitter.com/IncellDx">IncellDx </a>(Bruce Patterson.) Both offer biomarker panel testing--I'm working with RTHM (pronounced "rhythm.") This point includes grants or financial assistance for disadvantaged communities or those in financial need--this segment can't find nor afford such solutions.</p><p>4) Social Security Reform. I wrote about this in my last post, "<a href="http://www.seekingbostonmarathon.com/2022/08/navigating-choppy-waters-of-long-covid.html">Navigating The Choppy Waters of Long Covid Disability</a>." People are losing their jobs and losing their homes at a disturbing pace. Social Security rejects 70-80% of all claims. My first "no" took eight months. How can you survive this when adding the exorbitant costs of medical care? We need faster review and benefits; NOW!</p><p>5) COBRA (that thing you get with an employer benefit package, you think you'll never need) reform. I pay nearly $1,700 a month for continued health insurance. This adds to the financial calamity we endure. We need lower health insurance premiums and for extended periods of time. I personally am exploring ACA-based plans as my COBRA expires in December. I won't go so far as to say we need universal health care, but we need universal health care. I'd settle for COBRA reform.</p><p>6) Housing options. This one I think would be better served in the private sector. My old pre-Long Covid brain would form an application that would match long-term housesitting with people displaced due to "Long Covid." We can't do much more than reside and watch over your property, but many are facing homelessness. Kind of like Turo, or AirBNB, but matching responsible (with background checks) people to housesit. I'm hoping some of my old venture capital connections might pick up on this.</p><p>7) Meaningful and expedited House Bills. There are four that have been proposed--most recently with Mr Beyer.</p><p></p><ul style="text-align: left;"><li><a href="https://www.congress.gov/bill/117th-congress/senate-bill/3726/text">S.3726 - CARE for Long COVID Act</a></li><li><a href="https://www.congress.gov/bill/117th-congress/house-bill/2754?s=1&r=88">H.R.2754 - COVID–19 Long Haulers Act</a></li><li><a href="https://www.congress.gov/bill/117th-congress/house-bill/7482/all-info?r=50&s=1">H.R.7482 - TREAT Long COVID Act</a></li><li><a href="https://assets.constituentvoice.net/solvemecfs/House_Version_Bill_HR1616_118.pdf">HR 1616</a></li></ul><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs06yppzSS0Zl-6ucTegyN5ZoQDSSEciaX65JpW0JcoK2DFw5c_T8OtkBEcXBaM9nMz8ypkSdvUOoCfm0bVNmmEGY5lhfSXK32pP1niWPnRg-RdHzPIMFjs92ro2gxpNwLrKfcIo4Is_pROh0bC4cfa7iAhS7Z70mwAkpFAEYrW8w2Ds7nxQmQE2gg4g/s1200/dont-do-it-Hickenlooper.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs06yppzSS0Zl-6ucTegyN5ZoQDSSEciaX65JpW0JcoK2DFw5c_T8OtkBEcXBaM9nMz8ypkSdvUOoCfm0bVNmmEGY5lhfSXK32pP1niWPnRg-RdHzPIMFjs92ro2gxpNwLrKfcIo4Is_pROh0bC4cfa7iAhS7Z70mwAkpFAEYrW8w2Ds7nxQmQE2gg4g/w400-h400/dont-do-it-Hickenlooper.jpg" width="400" /></a></div><br />The last one is "dead in the water" and the other two are still at the introduction phase. My opinion is they all fall woefully short of the above recommendations. As if we weren't depressed enough, these bills are a band-aid on a gushing wound. </div><div><br /></div><div>That brings us back to Director Walensky. The <a href="https://www.cdc.gov/">CDC </a> and the NIH did form the <a href="https://recovercovid.org/">RECOVER </a>Long Covid Initiative (would love to get opinion here or anyone that's got into one of their studies) but I've yet to see tangible impact by either agency.</div><div><br /></div><div>Walensky has been under fire for her <a href="https://www.washingtonpost.com/health/2022/08/17/walensky-revamp-cdc-culture-covid/">poor response to Covid</a> and certainly under fire for sending kids back to school without masks; just as the Mayor in <i>Jaws </i>insisted on getting his locals to get in the water over 4th of July weekend. Another post, but children (pun intended) are not immune to the devastation of Long Covid and have their whole lives (potentially) to deal with this horrible disease.</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd0F_O-7LXwzfGZQ_4gCI1KYjThoHt-NcTzB8FKUWMU57S-Bh71vvUVeWgITHeiUMfszbjiU14EDOQkv0XnLyCUw-18LJdEbqixc-nUCbuy6r52kBVQXLNBvoI6BK1GXlBl8S8ztftp5OfzLkGDTq8rpp1Qy_9-0bBp65oMyMqdHH-ukLoe_tf-o-sHQ/s654/crow-letter.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="654" data-original-width="498" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd0F_O-7LXwzfGZQ_4gCI1KYjThoHt-NcTzB8FKUWMU57S-Bh71vvUVeWgITHeiUMfszbjiU14EDOQkv0XnLyCUw-18LJdEbqixc-nUCbuy6r52kBVQXLNBvoI6BK1GXlBl8S8ztftp5OfzLkGDTq8rpp1Qy_9-0bBp65oMyMqdHH-ukLoe_tf-o-sHQ/w305-h400/crow-letter.jpg" width="305" /></a></div><br />I should point out that my Long Covid brain isn't what it was so I'm happy to be corrected on any (factual) information above. I polled some of my Long Covid friends and got words back like "criminal" and "negligent" regarding our government's response.</div><div><br /></div><div>I have spoke to my <a href="https://twitter.com/SenatorHick">Senator (Hickenlooper's</a> office) staff last year. Emails this month have been left unreplied. I wrote my <a href="https://twitter.com/JasonCrowCO">Representative Crow</a> and got back a "I'm not on that committee" but here are some "fun facts" on Long Covid. Um...I know what it is--you clearly didn't read my plea for help, I have it. I asked for who was on that committee and did not get a response--I believe it's <a href="https://degette.house.gov/">Diana Degette</a>--not my district but the only one on it from Colorado.</div><div><br /></div><div>Perhaps we should put Matt Walsh, Labor Secretary, in charge of this. He took a potential collapse of our economy with the <a href="https://www.politico.com/news/2022/09/15/rail-strike-unions-labor-deal-00056997">train union situation </a>that could have cost billions in the economy and seemingly fixed it overnight. How 'bout we put him in charge of our <a href="https://jamanetwork.com/journals/jama/fullarticle/2771764">$16T potential Long Covid tsunami</a>?</div><div><br /></div><div><i>Footnote: Please correct comment, add your ideas. I continue to write my Representatives and Congressman with little to no response, but we need to keep throwing out our voice.</i></div><p></p><p><br /></p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com4tag:blogger.com,1999:blog-8476235401101578979.post-40028811338635465092022-07-19T14:50:00.004-07:002022-07-27T13:27:14.315-07:00You want the Good News or the Bad News?<p>In today's post, I won't bemoan my symptoms other than to say my shortness of breath, brain fog, and chest "madness" all seem worse than they were three months ago and certainly one year ago. With all that, I haven't had the energy to write or draw/illustrate of late as my energy is low, I'm dealing with the loss of parents, and working on my latest disability review. I've mainly been updating on my <a href="https://twitter.com/seeksboston26mi">Twitter </a>and <a href="https://www.instagram.com/seekingbostonmarathon/">Instagram</a>.</p><p>As someone with Long Covid; internet groups, reddit channels, and social media can be a labyrinth of confusing information with sometimes more depression and lunacy than hope. There are some "glimpses" of good news and few cases of some people "pulling out of" Long Covid but those are few and far between. This doesn't count continuous "well meaning" individuals that constantly send me articles and remedies. The craziest being Russian anti-biotics. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFSLTT8kgfZkUIL6-eK4GZ9n-G0COn6XvJ_Wc--5L1M3N0mXnX_1GdEIL6mqLw9yRMEdV_Opd21jfS2yjjTysQ7xlODx_gYuK0nsm-8T4RLOSp_Z7_DpuvlqV5pPZ4W3x-NzCInqIkELBglsYyNJt592HFkkcqLNDqSACiJI8JbxKg6IdbeCbtRX-yg/s4032/20220710_101545_01.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFSLTT8kgfZkUIL6-eK4GZ9n-G0COn6XvJ_Wc--5L1M3N0mXnX_1GdEIL6mqLw9yRMEdV_Opd21jfS2yjjTysQ7xlODx_gYuK0nsm-8T4RLOSp_Z7_DpuvlqV5pPZ4W3x-NzCInqIkELBglsYyNJt592HFkkcqLNDqSACiJI8JbxKg6IdbeCbtRX-yg/w300-h400/20220710_101545_01.jpg" width="300" /></a></div><br />Sifting through all that, honestly my best researcher is my wife. I can't thank her and love her enough for the patience she's exhibited throughout this journey as she continues to find worthwhile "nuggets" of information that have helped steer my healing journey. I'd like to say I'm healing but that would be inaccurate, but have to frame my journey with hope.<p></p><p>One of the more promising theories that has surfaced has been around microclots as a culprit for the myriad of symptoms that Long Covid patients endure. <a href="https://twitter.com/resiapretorius">Resia Pretorius</a> (in South Africa) and <a href="https://twitter.com/dbkell">Professor Doug Kell</a> are among the seemingly handful of people around the world with focus on this but up to this point, it's largely been outside the U.S. </p><p>Not to digress but microclots took a giant "punch in the gut" and <a href="https://www.nih.gov/">NIH </a>has a "black eye" over last week's White House hearing on Long Covid. <a href="https://twitter.com/PutrinoLab">Putrino Labs</a> from Mount Sinai had requested grant money to research microclots but alas were <a href="https://twitter.com/PutrinoLab/status/1547978525331693571">turned down</a>--my twitter feed was on fire just as my chest was.</p><p>I am used to meandering thoughts on these pages but brain fog makes it worse. I'll tie it all together shortly. Please be patient. </p><p>Getting back to the crack research team of Seeking Boston, (Mrs. Seeking Boston) found <a href="https://www.thebodypro.com/article/microclots-hidden-cause-long-covid-symptoms">an article </a>on microclots and lo and behold, there is a clinic in the United States that emerged from this barren wasteland focused on Long Covid out of Redwood City, CA called <a href="https://rthm.com/">RTHM </a>(pronounced "rhythm.")</p><p></p><br />I had a couple initial consults with RTHM prior to last week's visit to Portland, Oregon (one of five States they operate in thus far) that laid out a game plan starting with testing from <a href="https://www.innovativebioanalysis.com/">Innovative Bioanalysis</a>* that's developed a biomarker Long Covid "panel" including cytokine testing. This gets to the "do you want the good news or the bad news" part of this post. Most of us that have Long Covid want answers but some of them are hard to digest.<p></p><p>Along with 16 vials of blood on top of the Innovative Bioanalysis panel, Dr. Stuart Malcolm of RTHM found a few "smoking guns" in the results. Good that he found this, but the bad news is they found there were two markers that indicated vascular inflammation. Timing was not great as I got this news a day before a new decade birthday. As I googled, "vascular inflammation," the results were more than a bit alarming; can lead to thrombosis, stroke, and heart attack. Happy Birthday Seeking Boston! Like many nights, my mind raced with thoughts of mortality and potential life events I could miss.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOL715Q1nwmq6FvedzkhQhmMWhmz1_HzHs_PrTb1OM_LASJuhDCAkMiFFHTZQ-Exurvk6YfcQr6rHFOMLiRLlFAv4QTb4RfqpaEJSr2N7Q5oGjf0dP98u71wOzrYPQzVyRoBAo7qJXhnTTMMQMRuM_ks-3_k5xdevcHud1cONM6lAOw0Gzyz-Y8YrqcQ/s1920/rona.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOL715Q1nwmq6FvedzkhQhmMWhmz1_HzHs_PrTb1OM_LASJuhDCAkMiFFHTZQ-Exurvk6YfcQr6rHFOMLiRLlFAv4QTb4RfqpaEJSr2N7Q5oGjf0dP98u71wOzrYPQzVyRoBAo7qJXhnTTMMQMRuM_ks-3_k5xdevcHud1cONM6lAOw0Gzyz-Y8YrqcQ/w640-h360/rona.jpg" width="640" /></a></div><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>I'd note that I found RTHM to be the first clinic I've found that combines "start-up," research, and clinician care specializing in Long Covid. Talking to Dr. Malcolm, it's refreshing to talk to a "Long Covid Doctor" (yes, that's a thing!) that understand symptoms and potentially root cause treatment vs. throwing prescriptions at some of the symptoms. To-date (not faulting any of the exemplary care I've received thus far,) it's been a bit of "trial and error" as we're clearly still in research phase of this monster.</p><p>If you've been keeping track, I've had virtually every blood test, scan, EKG, heart cath, PET scan, and have been injected with nuclear agents 3-4 times for imaging to try and identify what's going on. Over 150 Dr. appointments including those tests haven't revealed anything wrong with my lungs or heart--this is a common thread for people with Long Covid; especially those infected early on when there were no swabs. In fact, I had one cardiac specialist tell me that there was nothing wrong with my heart--get out there and exercise. Sorry, but this is potentially deadly advise and I've suffered setbacks (notably with PEM; post exertion malaise) trying these debacle plans.</p><p>Again, I don't fault these recommendations as the medical field has tried to use the "playbook" used with other post viral illnesses (such as previous SARS, Lyme, and Ebola.)</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO6l1s1g9DQL2z6b7u9AOnPZYKmPs0qrr1p4cUmod3k1nL4Z5sOYKuyQac9QGh-1XqeE4IVkldeOlgcLc-Eaa0HONECKY2TIUwI1yyN5hCaNNu-dU-dNnKYDztq2KGnjAMM5exEqyGfAOwH9I1S8NswVgjw9Dqs98Ir-OLJ7pVBO6VCJmjvE9EnAPF9Q/s2263/Screenshot_20220714-101717_Acrobat%20for%20Samsung.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1031" data-original-width="2263" height="292" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO6l1s1g9DQL2z6b7u9AOnPZYKmPs0qrr1p4cUmod3k1nL4Z5sOYKuyQac9QGh-1XqeE4IVkldeOlgcLc-Eaa0HONECKY2TIUwI1yyN5hCaNNu-dU-dNnKYDztq2KGnjAMM5exEqyGfAOwH9I1S8NswVgjw9Dqs98Ir-OLJ7pVBO6VCJmjvE9EnAPF9Q/w640-h292/Screenshot_20220714-101717_Acrobat%20for%20Samsung.jpg" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>So back to the results. Those two markers were specifically VEGF and sCDL40L (see image) and were 3-4x + out of normal ranges. <a href="https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435#:~:text=Overview,in%20organ%20and%20tissue%20damage.">Mayo Clinic describes</a>, "Vasculitis involves inflammation of the blood vessels. The inflammation can cause the walls of the blood vessels to thicken, which reduces the width of the passageway through the vessel. If blood flow is restricted, it can result in organ and tissue damage."</p><p>Happy birthday (again.)</p><p>This is the beginning of a new chapter in my Long Covid journey. Despite the bad news there's hope. In 30 months since getting sick, doctors early on had no answers or perplexed looks and moved on to simpler symptoms to discuss when I'd tell them that it "feels like organs are cooking inside my chest." Theories around small fibers in the chest seemed viable, but my previous diagnosis of small fiber polyneuropathy plus vascular inflammation begins to explain the full breadth of my body's madness.</p><p>In the dearth landscape of Long Covid, RTHM is an oasis for all those suffering from Long Covid in the United States. I am fortunate as prior to getting sick, I had a high-functioning brain as a sales executive and fragments of that brain have helped me advocate for answers and care. </p><p>Many lack financial resources as they have lost their jobs (like I have) or haven't been approved for disability to help pay day-to-day bills as this care journey has been anything but free. Personally, my super expensive COBRA runs out in five months and my disability payments are on pause due to yet another review. My point is this exacerbates the availability of care for those suffering from Long Covid even further.</p><p>But alas again, there's hope.</p><p>* Trying to confirm, but I believe another start-up IncellDx (CEO <a href="https://twitter.com/brucep13">Bruce Patterson</a>) does the reporting component of Innovative Bioanalysis as noted in the footnote of the report image posted.</p><p><br /></p>
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<p></p><p><br /></p>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com2tag:blogger.com,1999:blog-8476235401101578979.post-43623326818198238672022-06-08T14:43:00.001-07:002022-06-08T14:43:51.052-07:00How Long Covid Exhausts (my) Body<p>Last night Seeking Boston's "crack" research team (also known as Mrs. Seeking Boston) sent me an <a href="https://www.nytimes.com/live/2022/02/22/world/covid-19-tests-cases-vaccine#heres-how-long-covid-takes-a-toll-on-the-body">article </a>("How Long Covid Exhausts the Body") from Josh Keller of the New York Times. As I slowly went through the words coming across the screen, it felt like they'd interviewed me and told my story. For those of you that still are wondering what Long Covid is, how it affects people, or why I drew the "short straw" like upwards of 30% of Americans (and worldwide) that get Long Covid; this article should help.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><span style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><a href="https://www.nytimes.com/live/2022/02/22/world/covid-19-tests-cases-vaccine#heres-how-long-covid-takes-a-toll-on-the-body"><img border="0" data-original-height="1333" data-original-width="2000" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqsDfmvL5nhTZrxL9Nf5iGKinBJUUZSXzXom6ZNHi92DEDbhhF3-aUN7RrFB0R5IhfyoNZsvwIhrxapb0TM9L-Myk21pF9TPCn9Z3VGkAHotddsKej4leCqPtS5eA2_J0XzQZy-PBz4vjfAFs64Ievi8QMXQYpxp9Ykmb6GIiI_5KGlaEwqopCH_RULA/w640-h426/long-covid-exhausts-body-promo-1645113372549-superJumbo.webp" width="640" /></a></span></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;"><a href="https://www.nytimes.com/live/2022/02/22/world/covid-19-tests-cases-vaccine#heres-how-long-covid-takes-a-toll-on-the-body">Source: New York Times</a></span></i></td></tr></tbody></table><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>With that, ten key points from Josh's New York Times <a href="https://www.nytimes.com/live/2022/02/22/world/covid-19-tests-cases-vaccine#heres-how-long-covid-takes-a-toll-on-the-body">article</a> to help you understand Long Covid and how it resonated with me.</p><p>1) "Long Covid is different" than onset of Covid symptoms. "A chronic illness with a wide variety of symptoms, many of which are not explainable using conventional lab tests. Difficulties in detecting the illness have led some doctors to dismiss patients, or to misdiagnose their symptoms as psychosomatic."</p><p>If you've followed my story, you know that I've had every lung and heart test there is among 150+ Dr and Hospital visits. Virtually all tests show "unremarkable results" that pre-2020 medicine cannot explain. I've had the heart Dr. tell me "your heart is fine, go out and run," and a Psychiatrist all but suggest it's "in my head" or that my obsession with healing is making it worse. F**k you Dr. Gaslight!</p><p>Fortunately, <a href="https://www.mayoclinic.org/">Mayo Clinic</a> is my quarterback and diagnosed me with Long Covid in March of 2021--nearly a year after the onset of my illness.</p><p>2) There's a <a href="https://www.cell.com/cell/fulltext/S0092-8674(22)00072-1">recent study</a> that suggests there are four factors that makes it more likely that someone progresses from Covid to Long Covid. "high levels of viral RNA early during an infection, the presence of certain autoantibodies, the reactivation of Epstein-Barr virus and having Type 2 diabetes." I have two of the four including inflammation and previous exposure to Epstein-Barr. Not the lotto ticket you want to win.</p><p>3) Researchers suggest that viral genetic material can remain embedded in tissues for months (or in my case over two years.) "Ongoing studies are trying to determine if these viral reservoirs cause inflammation in surrounding tissues, which could lead to brain fog, gastrointestinal problems and other symptoms." In my case, I've had the worst three months, three weeks, and three days I've had since I got sick. Brain fog is thick. One of my <a href="http://www.seekingbostonmarathon.com/2020/12/when-rona-leaves-town.html">earlier posts</a> (and illustrations) suggests the "Rona" "tornado" left town but left destruction behind. The error in that post is the evil pathogens seemed to stay behind.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoU_vUVqRsWBq_FEhNTR2V3i2di4bdY3I3B6zacdAoMCFGzmUatRp0GxtlVHxVDJFL-OkzO8wAUrIn4Y8uRHZLT-m0PlfbDVRlD9mThPau_QhHlLLIPdNaKYVW74r8ndkk8scBGxO1mvdsLiyeaPxbDtLRhmiP3sVMHOMRV7BQJKn6ZgjQxff6nT4FGA/s1920/rona.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1920" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoU_vUVqRsWBq_FEhNTR2V3i2di4bdY3I3B6zacdAoMCFGzmUatRp0GxtlVHxVDJFL-OkzO8wAUrIn4Y8uRHZLT-m0PlfbDVRlD9mThPau_QhHlLLIPdNaKYVW74r8ndkk8scBGxO1mvdsLiyeaPxbDtLRhmiP3sVMHOMRV7BQJKn6ZgjQxff6nT4FGA/w640-h360/rona.jpg" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>4) "Many long Covid patients struggle with physical activity long after their initial infection, and experience a relapse of symptoms if they exercise. Initial studies suggest that dysfunction in the circulatory system might impair the flow of oxygen to muscles and other tissues, limiting aerobic capacity and causing severe fatigue." In my case, I can have "bouts" of shortness of breath while simply sitting on the couch and the grocery store can be a nightmare. I hit the debilitating phase when my pulse oxygen drops to 92 or below which for some reason is happening more frequently of late.</p><p>There's much discussion in the forums around PEM or post exertion malaise. I have gone through two post-Covid clinics that tried to introduce gradual exercise. This is coming from a five-time Boston Marathon qualifier and sub twenty 5K runner. We're not talking the uphill sprints that my coach Benita used to prescribe but rather 10-15 minutes walking on the treadmill. We had to terminate the last program as my physical therapist noted that I was "digging a deeper hole."</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKK6ljBPtwJUTyb3MuZtnvd0yvmWtgU1VQm-pmrCwD4QvKgdhV4VytrXOjcDO4lKpGZowvH8Xvj7028xNgJfwqileOzlA56rhrgAC7V2jfKKOAbzBGpW8W3tuNVo4rsiw2shIuHRThYJ-8OJhSF9Oe50_V3nNLiE3OLPSgxTswWz6gztzt0LY1W_HVbg/s932/neuropathy-SBM.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="694" data-original-width="932" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKK6ljBPtwJUTyb3MuZtnvd0yvmWtgU1VQm-pmrCwD4QvKgdhV4VytrXOjcDO4lKpGZowvH8Xvj7028xNgJfwqileOzlA56rhrgAC7V2jfKKOAbzBGpW8W3tuNVo4rsiw2shIuHRThYJ-8OJhSF9Oe50_V3nNLiE3OLPSgxTswWz6gztzt0LY1W_HVbg/w400-h297/neuropathy-SBM.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">My Small Fiber Polyneuropathy Biopsy Result</span></i></td></tr></tbody></table><br />5) "One possible culprit (to the above breathing issues:) Chronic inflammation may damage nerve fibers that help control circulation, a condition called small fiber neuropathy." I had my local neurologist, <a href="https://www.uchealth.org/provider/matthew-wicklund/">Dr. Wicklund from UC Health </a>repeat a test late last year which indeed showed I have small fiber polyneuropathy. The manifests itself in many ways and certainly explains the perplexing restless legs and burning feet that many Doctors couldn't explain in 2020.<p></p><p>6) Small fiber polyneuropathy part II. There have been many (early) unexplained symptoms; burning chest (see Alien-<a href="http://www.seekingbostonmarathon.com/2021/07/the-monster-within.html">-"The Monster Within" post,</a>) chest pain, neck pain, and tender to painful skin--last week, as symptoms were heightened, simply brushing my hand on my arm was painful.</p><p>7) Hope theories. There are a few promising theories on the "Why" that is leading to some hopeful stories of treatment. One of those (see <a href="https://twitter.com/resiapretorius">Resia Pretorius</a> among others including Professor <a href="https://twitter.com/dbkell">Doug Kell</a> and his <a href="http://dbkgroup.org/longcovid/">paper</a> on microclots. Don't ask me as I was into journalism and art in high school but common sense would say that this "HAS" to be bloodstream (to explain shortness of breath) if lung and heart images are fine.</p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL6j1JiX3QnPMy5c2HphjmhZBTlpTcRKgZTMGdbr_WtNteKpyYQaMYMY6A4XsMVyQRhPP89KkKL6qtHwdfRI_gAqOXjyqY53x3rUgn2fMYw9Xbj_d0XA56B9HZM3OXDW0t0TzhKHuqBKiYY1CGJvXdcw3XbjqibBaF09uaFsLMyq5N9LNGUyRO1NOBMw/s1056/microclots.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><i><span style="font-size: x-small;"><img border="0" data-original-height="556" data-original-width="1056" height="336" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL6j1JiX3QnPMy5c2HphjmhZBTlpTcRKgZTMGdbr_WtNteKpyYQaMYMY6A4XsMVyQRhPP89KkKL6qtHwdfRI_gAqOXjyqY53x3rUgn2fMYw9Xbj_d0XA56B9HZM3OXDW0t0TzhKHuqBKiYY1CGJvXdcw3XbjqibBaF09uaFsLMyq5N9LNGUyRO1NOBMw/w640-h336/microclots.jpg" width="640" /></span></i></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Source: New York Times</span></i></td></tr></tbody></table><br /><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>In terms of Microclots, it's definitely "research phase" which limits what conventional hospitals (like Mayo, National Jewish Health, and UC Health--all hospitals I've worked with) can do. Not a "knock against them"--imagine Polio or any other disease that first hit the planet. My beautiful bride did find <a href="https://www.thebodypro.com/article/microclots-hidden-cause-long-covid-symptoms">another article </a>on the topic that shared a company in the US; <a href="https://rthm.com/long-covid-coagulopathies-and-microclots/">RTHM</a> out of Redwood City, CA that's working with Dr. Pretorius and others. Stay tuned as I've reached out to them on potential treatments.</p><p>8) Hope part II. Along with microclots, you will see a lot of research, articles and forum discussion around mitochondria and cytokine "storms." </p><p>"Inflammatory substances called cytokines, which are often elevated in long Covid patients, may injure the mitochondria that power the body’s cells, making them less able to use oxygen. Walls of blood vessels may also become inflamed, limiting the uptake of oxygen." Back to my "somehow I never took chemistry in high school" expert background (#NOT,) it HAS to be in the bloodstream or cellular level; otherwise, what can explain it attacking all parts of my body?</p><p>9) Close ties to ME/CFS. Much of my #longcovid twitter feed is comingled with those suffering from Myalgic Encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome--or ME/CFS. Debillitating is the most-often used word when describing this condition. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6Y1Krr7iWSsnujb4mMZsQNsIaRMgdEUt0CFZzBHVO4EpRTFhe84grEr1ybYqYCsh7tYk-m74oqsbva3zDYnaxqpDz4VPt5E6vrzd_MrHrHEHrXjEO7toG3P_XVaWkTOWqzpRdeB9SqF2tNN1vaIQKZYRdsbHqfLJyQTN6ENPGk5tilUfceGlMe1uFLA/s400/Untitled-1.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="324" data-original-width="400" height="259" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6Y1Krr7iWSsnujb4mMZsQNsIaRMgdEUt0CFZzBHVO4EpRTFhe84grEr1ybYqYCsh7tYk-m74oqsbva3zDYnaxqpDz4VPt5E6vrzd_MrHrHEHrXjEO7toG3P_XVaWkTOWqzpRdeB9SqF2tNN1vaIQKZYRdsbHqfLJyQTN6ENPGk5tilUfceGlMe1uFLA/s320/Untitled-1.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">My "theta waves showing cognitive issues and <br />my brain working "double time" to manage <br />the chaos in my body</span></i></td></tr></tbody></table>Josh writes,"Some long Covid patients meet the criteria for ME/CFS (also known as chronic fatigue syndrome), which often starts after a viral infection. Researchers have found that ME/CFS patients also suffer from a lack of oxygen triggered by circulatory problems. That puts enormous strain on the body’s metabolism and makes simple activities feel like strenuous exercise. Last year, one of my (what I call long covid) sub-diagnosis was CFS from Dr. Ganesh from Mayo Clinic.<p></p><p>This would explain why Target or my local King Soopers shopping experiences can be a nightmare combining confusion with severe bouts of shortness of breath when shopping for as few as a few items. Absolutely brutal.</p><p>10) I started this blog talking about "brain fog" and will end with it. Simply put, I went from a high-performing software sales executive that now sometimes has to look up my kids birthdays, couldn't recently recite three items I was supposed to get from the store (five minutes later,) or having to pull over to Google where I am going to pick up dinner (when I'd suggested that night's dinner fare.)</p><p>"Even people with mild cases of Covid can experience sustained cognitive impairments, including reduced attention, memory and word-finding. Possible long-term neurological problems from Covid constitute “a major public health crisis,” according to Dr. <a href="https://research.ninds.nih.gov/researchers/faculty/avindra-nath-md">Avindra Nath</a>, the clinical director of the National Institute of Neurological Disorders and Stroke." (<i><a href="https://www.nytimes.com/live/2022/02/22/world/covid-19-tests-cases-vaccine#heres-how-long-covid-takes-a-toll-on-the-body">New York Times.</a></i>)</p><p>Despite Dr. Gaslight suggesting I "roll over" and accept it, I continue to seek answers and treatment. Locally, I've been working with the <a href="https://www.braincodecenters.com/neurofeedback-near-me/highlands-ranch-mental-health-care?campaign=denver&gclid=CjwKCAjwkYGVBhArEiwA4sZLuKKKFZVFfDeibH6CR80IwuBvZlpZa2MeEC0MGu80aKjM2bDyEJEguRoCdSAQAvD_BwE">Braincode Center </a>which provided a "brain map" of what's going on in my coconut--I know, I know...I was afraid of what they'd find up there. It's "early" for Braincode yet they are seeing commonality in people coming in for Long Covid. </p><p>My initial "brain mapping" shows my theta waves are going "berserk" (my words not theirs.) The bright red (top row second from the left) shows this overactivity which is indicative of my brain trying to manage all the chaos happening upstairs. They have also seen this in other patients dealing with cognitive issues. I'm five sessions in to their neurofeedback training which helps "re-map" the brain. </p><p>I don't expect Braincode to be a panacea but if it can help calm the brain "sending fire engines" where there's no fire or help mitigate the clinical depression, it will be money well spent.</p><p>Thanks to Josh and the continued long covid coverage from the New York Times. I still find people who don't know what Long Covid is, or don't understand what's wrong with me. Awareness is key to funding research, so one step at a time.
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<p></p><p><br /></p>Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-23153948932709203532022-05-04T13:44:00.005-07:002022-05-04T16:20:51.356-07:00Fifty Things I Forgot to Thank My Mom For on Mother's Day<p>This has been the toughest post yet to try and put pen to paper or fingers to keyboard. Especially approaching the first Mother's Day without my mom.</p><p>My mom who was one of my biggest fans passed away somewhat unexpectedly in February. Our mom was one of the last ones off the dance floor at her first grandchildren's wedding (Maya and Marco) in August. She suffered a massive stroke shortly thereafter in September. I say unexpectedly because we had the highest hopes that she'd recover and we'd have more weddings and holidays to spend with her.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBgW99rxAskPKP-EXAwHjx7Rex0irHnOuXm8lPhnipF-vcW4PSQO3jc3xSU-SjRTiRQGaPZKHXLFw49B8HkyulMl-jGfcbZ-x3yq5GdtR6VEFzRwBC6rlNNlqxKVXgO-eFRRJGU60aNXmuAhAwApF0EI7GJs98AK8hn63_Ax1LxOs3HMjr98H6XzAsg/s857/242789846_10223118685814556_5764945299099748280_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="590" data-original-width="857" height="440" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVBgW99rxAskPKP-EXAwHjx7Rex0irHnOuXm8lPhnipF-vcW4PSQO3jc3xSU-SjRTiRQGaPZKHXLFw49B8HkyulMl-jGfcbZ-x3yq5GdtR6VEFzRwBC6rlNNlqxKVXgO-eFRRJGU60aNXmuAhAwApF0EI7GJs98AK8hn63_Ax1LxOs3HMjr98H6XzAsg/w640-h440/242789846_10223118685814556_5764945299099748280_n.jpg" width="640" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Happy Mother's Day Mom</span></i></td></tr></tbody></table><br />
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<br /><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>As a family, the adult children supported a plan of my sister Kim and her husband (Saint) Marc moving in to care for her as she'd lost almost all of her speech and had to go through extensive rehab to learn how to walk and eat again.</p><p></p><p>There were certainly moments of hope as short sentences and certainly her personality began to re-emerge from the fog of a stroke. Not that there were many unspoken words of love and gratitude but the new short lease on life gave her kids and grandkids the opportunity to share with her how much she meant to all of us. On her last day, we'd actually shown up for a "kids meeting" (you never stop being kids to your parents) to discuss next steps as it had become untenable to care for her at home despite 40 hours of weekday companion care we brought into the home. </p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcsy3Wbml577jazkbRQr9Adjy7l2nfzHtmwfWY9LNJUYvwZZUz4rgQXdYAvzlZpV31Le9LcB5BsfLM96k5rZip14Cn7d2EknmnNaB_s3PhpV0mGEujvkheLZm25sogwXr_rA18qPQtT-ao7Pkohi-3Jeo7TnHSMxWxWsB-dUvKGepub0d-bywMKa1wTw/s2048/275381354_10223985579646360_8832910360803688186_n.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1536" data-original-width="2048" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcsy3Wbml577jazkbRQr9Adjy7l2nfzHtmwfWY9LNJUYvwZZUz4rgQXdYAvzlZpV31Le9LcB5BsfLM96k5rZip14Cn7d2EknmnNaB_s3PhpV0mGEujvkheLZm25sogwXr_rA18qPQtT-ao7Pkohi-3Jeo7TnHSMxWxWsB-dUvKGepub0d-bywMKa1wTw/w400-h300/275381354_10223985579646360_8832910360803688186_n.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>Grandma and her grandkids posse</i></td></tr></tbody></table>On her last day, I was able to hold her hand and tell her again how much I loved her and how much she'd done in her life and for her grandchildren. She was the quintessential grandma who put kids and grandkids ahead of her own priorities. I sang "Somewhere Over the Rainbow" to her as her hands had become cold and fingers started turning purple. The three local kids all spent the night knowing she was down to her last couple of days. It will take a long time for me to forget the painful screams that shot from her hospital bed in her bedroom up into the loft where my wife and I were sleeping when Kim realized she was gone.<p></p><p></p><br />I used the word "gift" quite a bit as I described the time near the end that we had with her--to tell her over and over how much we loved her. Despite those precious moments, a mere two months later, I am crying less frequently but felt there were a number of other thanks that I wasn't able to share. With that, the "Fifty Things I Forgot to Thank My Mom For." (The "1000 Things" version will be in my third unpublished book.)<p></p><p>1) Taking us to the movies when our Stepdad Bob was going to take us on one of his trips with extra seats in the corporate jet he flew for Stearns Rogers. The extra seats were filled by other execs at the last moment; thus we were bounced from the flight. Mom took us to the movies--I think it was a Bruce Lee Movie. She knew we were sad and she wanted to divert our pain to the dark air-conditioned theatre. </p><p>2) Letting me move back home after college and again in my forties as I was going through a divorce.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnSaghcZRoE-mIIlRfhY2vFSOj6My7l4Gfgme_6mPJ-3fdFz_FV2SqpntuInLRT-sC-bst228WukDvEPnOVKwkr7b0l1yUgkbccqDRsr4psG382vO03q_Qo7JvyDYzNe5J5fXZjKwWujPUCXim-ZM4Zp1fCFWLHPnP-LvVZIuNyqk2uVR2n_qM-Hz0g/s1600/grandmaandkidsatxmasparade.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnSaghcZRoE-mIIlRfhY2vFSOj6My7l4Gfgme_6mPJ-3fdFz_FV2SqpntuInLRT-sC-bst228WukDvEPnOVKwkr7b0l1yUgkbccqDRsr4psG382vO03q_Qo7JvyDYzNe5J5fXZjKwWujPUCXim-ZM4Zp1fCFWLHPnP-LvVZIuNyqk2uVR2n_qM-Hz0g/w400-h300/grandmaandkidsatxmasparade.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Two things my mom loved, holidays and grandkids</span></i></td></tr></tbody></table>3) Letting one of my boys and her granddaughter move in as young adults as a similar financial safety net.<p></p><p>4) In grade school, attaching a ski pass to my down jacket before going to school on Monday. We'd gone skiing that weekend but I'd put the pass on my ski pants. I wanted to show off that I'd skied so she somehow reattached a pass. Years later I'd tell her the kids at school were onto the ruse as she'd tacked on an Adult lift ticket instead of a Youth ticket. #busted</p><p>5) Being there when I broke up with Ruth in high school, again when I broke up with Leslie in college and lent a crying shoulder when I divorced in 2000. She was always around to mend a broken heart.</p><p>6) Taking all my phone calls in my early twenties. We were close and spoke nearly every day. My mailbox was often met with birthday and holiday cards or letters. Later in life, she'd inevitably throw in a paper I wrote in grade school or an old white bordered Kodak photo.</p><p>7) Even though I never collected flamingos, my mom thought I did. For a period of time I'd get figurines, swizzle sticks and cocktail napkins all adorned with pink flamingos. We probably laughed about it but I thanked her for the sentiment. Please don't send me flamingos. I don't have anything against them--I just don't collect them.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQOZt85Rjm85JQMTncSDVPQrACGI5ja0fcuA_BTWNcJD5abvnLHIBfZm_ljO2luuSCTzYFgukHd1Z5rvlzmp4NlzIvohY0iRmGOXI34w-wCV67kBG9DR1E0352cnUhiubSbpwooXnWnjM8pL1KmwBRFTZasGHRao_PweAj0hHapSyOOQ2Ayr3HayGFFQ/s640/MarleneBdayReunion%20068.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="425" data-original-width="640" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQOZt85Rjm85JQMTncSDVPQrACGI5ja0fcuA_BTWNcJD5abvnLHIBfZm_ljO2luuSCTzYFgukHd1Z5rvlzmp4NlzIvohY0iRmGOXI34w-wCV67kBG9DR1E0352cnUhiubSbpwooXnWnjM8pL1KmwBRFTZasGHRao_PweAj0hHapSyOOQ2Ayr3HayGFFQ/w400-h266/MarleneBdayReunion%20068.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">"Dress Like a Johnson" day at Family Reunion</span></i></td></tr></tbody></table>8) The Hawaiian shirt she bought me that hung in my closet that I never wore. Nobody put more thought into gift giving than my Mom. Not all of them "hit the mark," but love exuded from the time she took to try and find something special to give.<p></p><p></p>9) Taking me to see "Howard the Duck" in 1986. One of many horrible movies I talked her into including all of the "Planet of the Apes" movies. We both would later laugh as we should have walked out of the movie theatre as it was absolutely horrible.<p></p><p>10) All of the loaded station wagon trips hauling me and my brothers to football practices, games and as I discovered my love of art, many an art show in Jr. High and High School where I'd won a few awards.</p><p>11) Coming home from a trip from Virginia with my Dad (Tom) and Stepmother Ruth which was shortly after my parents divorced I found a special surprise. Inside my bedroom was a ten-speed bike which would give me years of fun and transportation to school and to my first job as a dishwasher, (then busboy) at the Plankhouse Restaurant by the mall. My best friend Dave and I would trek up to the mall on our bikes to dig hangers out of dumpsters to turn around and sell them to the local dry cleaners for a penny a piece. (Dave jokes to this day, that I made him carry the "lions share" of the cargo.)</p><p>12) Lending a shoulder to cry on when I brought home a grades school photo that seemed to magnify my teeth as something between Chiclets or choppers on a donkey. I was convinced I'd never get a girlfriend. She was always a sympathetic mom especially during my "cruel" Jr. High years.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivwUBnPQRlEZBDPYRcQQ9dFXUmT8bSMV20lOn8YxCwcPC0LaCoQv_xFbvtqvuQqrhceN2oXh_PF4EniCbu8Z6Ixb26b0b_VlCRsSAB5sfZz7CVVJvsTR64q8Aewi74gwVN2zsZwGwG6W4xNC18amV09n7wwE7LVONGx_ttc5_jRiK-mRjhrLMJjZ5dAA/s5184/IMG_3929.JPG" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3456" data-original-width="5184" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivwUBnPQRlEZBDPYRcQQ9dFXUmT8bSMV20lOn8YxCwcPC0LaCoQv_xFbvtqvuQqrhceN2oXh_PF4EniCbu8Z6Ixb26b0b_VlCRsSAB5sfZz7CVVJvsTR64q8Aewi74gwVN2zsZwGwG6W4xNC18amV09n7wwE7LVONGx_ttc5_jRiK-mRjhrLMJjZ5dAA/w400-h266/IMG_3929.JPG" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Grandma loved her grandkids</span></i></td></tr></tbody></table>13) Building and lending to my early sense of style outfitting me (and my Brady Bunch siblings) with the coolest clothes to wear to school which included purple bell sleeves and a fringe leather vest. We were the "cool kids" at school--at least in grade school I thought we were.<p></p><p>14) Taking me to many embarrassing Dr. appointments like the time I was convinced around puberty that I had some kind of growth "downstairs." Dr. Schiff politely explained anatomy and that what I thought was certainly testicular cancer was normal development. There was a another such appointment I wrote then erased. Nobody wants to know where Dr. Schiff stuck his flashlight, but Mom held my hand throughout.</p><p>15) Making holidays super special as a kid that carried into my adulthood and as a parent. We would always look forward to Christmas, Halloween and 4th of July. A tradition I try and continue today.</p><p>16) Being one of my biggest fans with my run endeavors. She was a proud mother that would often talk about all of her kids' accomplishments including my five Boston Marathons.</p><p>17) Marrying my Stepdad Bob. Bob was an amazing provider and calm during the biggest life storms we would encounter. Bob and Marlene (my mom) put me through college and I have them to thank for the lucrative career I had in technology.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJNefgLtwzXm5isemfCd6SqGLdoCZ1X6v576pcjtK3by97yoQa5qIdEdI4ALrd54sqw6etGxY-yZhlf6M4EEkw7l_1yiQtlFP3OOMe7Y8XJauY6BX75ttFwkQ7d6P-e7LRtkAQppV2x0b0qcnQvSR6Z37dEsk3dtTi__E1wMEvBoRyxleqa7N_4Tm9uA/s1280/53186.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="856" data-original-width="1280" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJNefgLtwzXm5isemfCd6SqGLdoCZ1X6v576pcjtK3by97yoQa5qIdEdI4ALrd54sqw6etGxY-yZhlf6M4EEkw7l_1yiQtlFP3OOMe7Y8XJauY6BX75ttFwkQ7d6P-e7LRtkAQppV2x0b0qcnQvSR6Z37dEsk3dtTi__E1wMEvBoRyxleqa7N_4Tm9uA/w400-h268/53186.jpeg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Our Beautiful Mom</span></i></td></tr></tbody></table><br />18) Not yelling at me when Tony McCurdy and I got busted for underaged driving by the cops behind the King Soopers near our Jr. High. Bob and Mom were convinced it was my older brother Todd who was more inclined to get into trouble but alas that was the one night he was home in bed while I was in back of a patrol car.<p></p><p>19) When I was trying to survive my awkward Jr. High period, she'd gracefully try to give me social tips without making me feel like a loser. In one of my old photo albums is a black and white pic of me planting flowers and she offered me a can of Coors. My sheepish grin showed it was unnatural and contrary to the angel I was at the time. (Sorry--the albums are in the attic of our Dexter Street home that's rented out so you have to paint the visual of the skinny kid with red "bangs" awkwardly holding a can of beer--later in life, I'd learn how to comfortably hold a can of beer.)</p><p></p>20) When I broke up with Leslie in College she'd suggested "I show her" by taking (beautiful family friend) Alison Lobato to a school dance. Or was that Ruth in High School? Clearly I'd picked up that trait as at least one time I wanted to kick some kid's ass on the playground that wasn't being nice to one of my boys.<p></p><p>21) Trusting me to be her power-of-attorney and executor of her estate. The later is a much harder job emotionally especially calling numerous entities to close accounts and explaining why.</p><p>22) Knowing what to say or what not to say over the last couple years as I coped with Long Covid. I felt sorry for her as she took my physical decline much worse than I have. That was her nature--when we hurt, she hurt. When we had something to celebrate, she was happier with a bigger smile than we did.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-x17vVbYqQbmFnfxL7l2qLA6oYK1MQ3tGrnqFZQazFdHw2tmyYXEY23pY2XOXU6MbPn0awCRaUwrfCvRwN-QwUPlPwxLeH51vhwaEIcxDm61izjDcpkzbAtNAbsdS2UgPTMPflc99uBJ8bn3FufSZ5m49uSl6Xe9c1XIqCs1WOORZmUHOBDOYQteing/s1440/38818125_10214513116040690_2707820169656270848_n.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="810" data-original-width="1440" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-x17vVbYqQbmFnfxL7l2qLA6oYK1MQ3tGrnqFZQazFdHw2tmyYXEY23pY2XOXU6MbPn0awCRaUwrfCvRwN-QwUPlPwxLeH51vhwaEIcxDm61izjDcpkzbAtNAbsdS2UgPTMPflc99uBJ8bn3FufSZ5m49uSl6Xe9c1XIqCs1WOORZmUHOBDOYQteing/w400-h225/38818125_10214513116040690_2707820169656270848_n.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><i>Proper credit should go to Kim, but we loved German Pancakes</i></span></td></tr></tbody></table>23) The blue shag carpet and blue and green scheme that adorned my room in fourth grade after she'd married the second time to stepfather Bob. She wanted our new home to be special and it was. Same room that the ten-speed showed up in.<p></p><p>24) Being in the delivery room for birth of two of my three kids. Somewhere in my camcorder archives, I can still hear her extol, "ten fingers and ten toes" with the birth of Anna-Nicole--happy that we'd given birth to a healthy baby girl. Halfway through as little Anna-Nicole wasn't quite delivered, I said, "I think she has red hair." Mom and Grandma dismissed this as unlikely given the jet black hair Nikki's mom has. Sure enough, my carbon copy was born. Fortunately "Ty in a dress" (Nikki) grew out of her gangly awkward clone into a beauty inside and out.</p><p>25) Taking us to see Michael Jackson and the Jackson Five when it was the original Jackson Five. She was scared to death--think about a single mom taking kids to a Motown concert downtown in the 70's but showed the lengths she'd go to treat her kids. She was confused over the concertgoers in our row at the Denver Coliseum that had to "share their hand-rolled cigarettes"--but they weren't cigarettes. One of the many stories we tell over and over--especially the part where she knew the concert promoter who offered a backstage introduction. We gave her a hard time about not taking him up on that, but she was ready to escape back to the suburbs.</p><p></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Wn0x04GGIUrDDWLiRVy6VELz1cyncs5j6_N3u8qNy72tEYC2IUpPtTQ8CRl2_53wM4lQmZQy_pHRr8IucgYG7f7kYf4UjixUoFyLMYjEmgJBVnmYo5A777Udx5lmxsHmiYe8reLxJn9Sunk86Bkx3VbP2Kh0orffVok_rHZuVhdp4H3TB7bfg8lUOw/s1600/an%20and%20grandma.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6Wn0x04GGIUrDDWLiRVy6VELz1cyncs5j6_N3u8qNy72tEYC2IUpPtTQ8CRl2_53wM4lQmZQy_pHRr8IucgYG7f7kYf4UjixUoFyLMYjEmgJBVnmYo5A777Udx5lmxsHmiYe8reLxJn9Sunk86Bkx3VbP2Kh0orffVok_rHZuVhdp4H3TB7bfg8lUOw/w400-h300/an%20and%20grandma.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Grandma always attended school events</span></i></td></tr></tbody></table>26) Helping me get my first two jobs; one as a consultant with Don Johnson across the street and the second (indirectly) through our neighbor and friend Tom Costello Sr. Tom Jr. has covered my Long Covid story for both NBC Nightly News and the Today Show. That second job (with a company called Greenbar) would be the launchpad for a successful career in technology.<p></p><p>27) Encouraging my passion for art and writing. While it did not become a career, she supported my initial desire to be an art major. While I felt I "sold my soul to the devil" my sophomore year switching to the business college both Mom and Bob fully supported both choices. Art and writing are still a part of my emotional fiber and adorn these pages.</p><p>28) Taking each one of her four kids on a trip with just her. My trip was to San Diego and Rosarito Beach near Tijuana, Mexico . I can still smell and taste the buttery white meat from "Lobster Village." One overcast day on the beach, she protected me as we spotted armed Federalies approach our beach blanket fully armed. We would laugh later how her sister, my Aunt Marge scrambled to grab her beach towel and scurry back to the beach house as we took a photo with the armed soldiers. I didn't realize at the time, but I think they were (ahem) checking out my mom.</p><p>29) Spoiling my kids every bit as much as she did her kids. She attended countless dance, karate, and school performances.</p><p></p>30) When she walked into my childhood bedroom and saw me and my GI Joe going on a nude boat ride with my sister's Barbie, you didn't make me any more embarrassed than I was. Good thing nobody every heard that embarrassing story about me...until now.<p></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuIvID4ajhtjM-Zd2-o9OwjOPa2rkn8elBF3pcGTrhpAgbWI6MTaBXJ-ZbgKTai0fKE7uFDpjrUdOMHKtoJpOaXKIj_RiekrEwhJis6dxzoCkNooyAupgckv3XfYHV3Z7U-dFWzDdz_ZH6CAU_Ph3QpHLMvvGPxQXg8EjY799D--uE_lc9gEWPCqDTKg/s863/Ty-and-Mom-Rosarito-Beach261.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="594" data-original-width="863" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuIvID4ajhtjM-Zd2-o9OwjOPa2rkn8elBF3pcGTrhpAgbWI6MTaBXJ-ZbgKTai0fKE7uFDpjrUdOMHKtoJpOaXKIj_RiekrEwhJis6dxzoCkNooyAupgckv3XfYHV3Z7U-dFWzDdz_ZH6CAU_Ph3QpHLMvvGPxQXg8EjY799D--uE_lc9gEWPCqDTKg/w400-h275/Ty-and-Mom-Rosarito-Beach261.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><i>San Diego Trip Post College</i></span></td></tr></tbody></table>31) In college, I was working part-time at Montgomery Wards in the paint and hardware department. I mentioned in passing that I missed a party at the fraternity because I had to work. She told me to quit the job and enjoy college. Another example of her selfishness treatment of her children.<p></p><p>32) Thank you for leaving the Cosmo magazines laying around the house so it could feed my curiosity when I hit puberty. Not sure how I would have survived without secretly reading "Unhappy Lovers--Do you Need to Suffer" from the safe confines of the avocado-tiled bathroom on Detroit Circle.</p><p>33) Thank you for all the bragging you did to your bridge club over the years. I didn't ask for it, and didn't need it, but she was so proud of all her kids. For me, this reinforced the admiration you had for me and gave me confidence as I began my career in sales. This pattern continued into adulthood as I'd buy a home, a car, and eventually conquering my desire to qualify for the Boston Marathon. My first marathon photo still hangs on her fridge as we're taking on the tough task of selling her home.</p><p>34) With my recent health and resulting financial challenges, you would generously slip me a few bucks as you worried more than I did about the volatility of my situation. With your stroke, the questions stopped, but the concerned looks would still occasionally surface. Before you'd lose capacity, you Venmo'd me twice; for birthday and coffee money as my wife Phronsie and I went west for lung relief.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9dFEjj_jW1xkjVRTyUnCvGtg-96LSbTximCpjlC2yDoc4OZA-uVHJBIiWzOmEHZjcVFtHyKPOHCkeNYcXNYDbS9WnIb5JAtNjs0o3-XCmGs3RJEHpihnaPW1_ZZk_MR7w6Xo1tDuW01QdX7Dd1PaLH7JBO1DZpm1Mi81eHuCae5fasX5seh8naGbvtw/s1677/img005%20(2).jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1171" data-original-width="1677" height="279" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9dFEjj_jW1xkjVRTyUnCvGtg-96LSbTximCpjlC2yDoc4OZA-uVHJBIiWzOmEHZjcVFtHyKPOHCkeNYcXNYDbS9WnIb5JAtNjs0o3-XCmGs3RJEHpihnaPW1_ZZk_MR7w6Xo1tDuW01QdX7Dd1PaLH7JBO1DZpm1Mi81eHuCae5fasX5seh8naGbvtw/w400-h279/img005%20(2).jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><i>"Textbook" Grandma with Anna-Nicole and Jesse</i></span></td></tr></tbody></table>35) Your last gift was a few See's suckers. Not quite like the flamingo hobby I never had, I'm not sure it was my favorite candy but it was a special bond we had as she thought it was my favorite. Just as she'd often deliver a pint of raspberries on my birthday. She put special thought into giving.<p></p><p></p>36) Probably because you wanted to leave an inheritance to your kids, you didn't drive a fancy car but a 1999 Toyota Camry. You never went outside North America like I did. You saved as an inheritance was more important than a trip. I have regrets that she wasn't able to see more of the world but she loved the trinkets I'd give her that adorned her mantle when I would return from exotic locations around the world with my work. Of course she'd undoubtedly show them off to bridge club.<p></p><p>37) A lot of clicks. I use many of the same jokes over and over again here (perhaps testing if anyone reads this,) a common one was, :"I just hit 937K pageviews on my blog. I didn't realize my mom could click that much or have that many friends." "Badump, badump." </p><p>38) My first suit (not tri-suit) was from Sears. I'd read and took the book quite literally, "Dress for Success" early on. Even though my all-season poly suit didn't exude success, I felt ready to conquer the business world forty years ago. On one of my first cold-calling outside sales jobs, I decided to go to the tallest building downtown Denver. I went to the top floor (to get shut down by the receptionist) and decided I would walk each floor through the concrete and steel stairways. I didn't realize the stairwell was not just locked but also without air-conditioning. The first time I sweat in my Sears two-piece suit.</p><p>39) Pretending it was actually the flu when I went out drinking with my high school buddies after getting turned down for a dance invite from Jill Parrish in college. I was devastated and thought that Southern Comfort was the answer. Perhaps numb from my brother's escapades where he always got caught. I called it flu and she didn't challenge. Sorry for the brown bottle white lie Mom.<br /></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Pj29V5GU1wUJQ9eCeu03upmO-rRz7Wfv4RYIzxNd3ilPqNznt3B_gG856HOw6UYPXwczh_Dhhx5Kvun9EccWO0eanoOer1pEUAYmMgsRMnHlQoS3XbmurMo1h5T4bOGVsMAAeiR3rZb96WpZW7z68aY_Xe_QtAZbkD0X_2pvQwabtD9kviKTf5o-Cg/s1024/007.JPG" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="764" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Pj29V5GU1wUJQ9eCeu03upmO-rRz7Wfv4RYIzxNd3ilPqNznt3B_gG856HOw6UYPXwczh_Dhhx5Kvun9EccWO0eanoOer1pEUAYmMgsRMnHlQoS3XbmurMo1h5T4bOGVsMAAeiR3rZb96WpZW7z68aY_Xe_QtAZbkD0X_2pvQwabtD9kviKTf5o-Cg/w299-h400/007.JPG" width="299" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Broncos were a consistent passion</span></i></td></tr></tbody></table>40) While she caught few races as that's tough on a grandma in her 70's or 80's but she was there for my first marathon in San Diego and my last race in San Diego with Liam where Aunt Marge and my mom were yelling louder than anyone as Liam and I cruised through the Liberty Station park. We exchanged a sweaty high five and glances of admiration as we flew through the park she had been patiently waiting in for the blade, the boy and her boy to fly through.<p></p><p></p>41) The man with the boner artwork. We shared a couple of laughs when she found an erotic artist who incorporated copper relief into his work. Aunt Marge got the naked woman prominently displayed in her bathroom. I got the "slightly excited" nude male which we hung (no pun intended) in the guest room in the basement along with the female nude I created my freshman year in college.<p></p><p>42) I'm beginning to realize most of these are thick with embarrassment. Going to the movies (just the two of us) to see Jane Fonda and Jon Voight in the movie "Coming Home." The title was appropriate as Voight had returned from Vietnam without the use of his legs but he figured out how to (ahem) please Jane in other ways. Once again, we let silence counter the sheer awkwardness of the moment. Awco-Taco.</p><p>43) Buying me the game "Masterpiece--"the art auction game from Parker Brothers. Also beginning to think this should have been "blueprint for a life as a nerd virgin" but at an early age, she saw and supported my love of art. While that switch to business provided financial rewards, art would be part of my fiber for my whole life.</p><p>44) Taking my brother Todd and I to see Andre the Giant at a carnival in Saskatchewan in the late '70's. His fingers were the size of beer cans and I marveled at the "monster-like" creature that would dominate the wrestling world before he'd have a brief career in Hollywood. "Little Beaver" was the other wrestler we remembered from the trip as a "small person" wrestler.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVYVAzo-Y6zQSVwvA_WC41LEtBNSk4T1Xi3E0ZxnOIzfGdRD01L5ErNKLwqHIO7zPV1uc260wNtscQUI1gG194Fx9aWOa0-aLXTmbbIoJ2dXL_m0rWiOsDJ2r0GrmwGEZVoBlAiHjVbRbQ51TBZcK-rJ6HdVyK067ExFLq8qsQmxK-ZvP7KxUoPINvXQ/s2592/Wedding%20026.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1944" data-original-width="2592" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVYVAzo-Y6zQSVwvA_WC41LEtBNSk4T1Xi3E0ZxnOIzfGdRD01L5ErNKLwqHIO7zPV1uc260wNtscQUI1gG194Fx9aWOa0-aLXTmbbIoJ2dXL_m0rWiOsDJ2r0GrmwGEZVoBlAiHjVbRbQ51TBZcK-rJ6HdVyK067ExFLq8qsQmxK-ZvP7KxUoPINvXQ/w400-h300/Wedding%20026.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><i>Wedding Goofballs</i></span></td></tr></tbody></table>45) Sometimes it was the "unspoken word" like not saying anything about what Jane and Jon were doing. Another was the case of the nickname I hurled at my brother's football coach, Grant Kielman. My brother was with a few of his football teammates on the way to practice in the faux wood-paneled station wagon. I was trying to be funny and threw a phallic term (I didn't know what it was.) It was either Jay Milburn or Jim Roman yelled at me, "do you know what that is???" I didn't. Mom kept driving--hands ten and two on the steering wheel.<p></p><p>46) How to iron a shirt. As I'm typing in a coffee shop in Rochester, MN between Mayo Clinic appointments, I ironed a crumpled shirt before my day started. Believe it or not, there's a proper (and improper) way to iron a shirt. Cuffs, sleeves, and that odd trapezoid panel below the neck across the shoulders--which is the tough part if nobody taught you how to do it.</p><p>47) There are few playbooks in life but plenty of books on life changes like divorce. I learned a lot from my mom on how to manage young children dealing with separated and divorced parents. I also appreciate how she took in my new wife and especially our son Keenan. My wife's dad Leroy and mom shared the same birthday which added another layer of closeness with my new family and in-laws. I appreciate her not using the label "stepkid" or "stepson" for Keenan as Phronsie and I both raised him as our own.</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNWPD2w2-wnhk9LcGELb8WeSSUnRfQFINvgb00U-oRhdJpIzwrBYDYA1bXuMGPi4hU9l8UsEfJf_LBYvsNiY04yBVMn6RN5Wiq9UsKB0l93Kw-5Pqqbb89JnoPslIOPA-4gM59JZYaEW-ZcHPQguDUoZlxUuQfhFIgJF39is5NdEi5McCAUryAwuovAg/s4032/20210718_123359.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNWPD2w2-wnhk9LcGELb8WeSSUnRfQFINvgb00U-oRhdJpIzwrBYDYA1bXuMGPi4hU9l8UsEfJf_LBYvsNiY04yBVMn6RN5Wiq9UsKB0l93Kw-5Pqqbb89JnoPslIOPA-4gM59JZYaEW-ZcHPQguDUoZlxUuQfhFIgJF39is5NdEi5McCAUryAwuovAg/w300-h400/20210718_123359.jpg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i><span style="font-size: x-small;">Nikki and Grandma at Drag Queen Brunch <br />for her last Birthday</span></i></td></tr></tbody></table>48) Road trip skills including the re-purposed use of a coffee can when the next rest area or gas station is a couple hundred miles away. I now prefer the "big mouth" Gatorade bottle which is also my trick (below a Hefty garbage bag) in the corral of a marathon waiting for the gun to go off. Yes, I've done that in the car and in a race--one time sitting next to a young woman who didn't realize I was talking and peeing at the same time. These are some serious life skills you taught me.<br /><p></p><p></p>49) Movies seem to be a theme throughout life as Mom would describe going down the hill from Evergreen into Denver or when they lived in Denver on Clayton Street paying a nickel or a dime for a movie. After her stroke, I came over to her home on Tappy Toorie to watch football on a Sunday to give Kim and Marc a break. <p></p><p>She was propped up in her bed and the games commenced as I was tuning into my fantasy football that day. I could tell she was not quite into it (like she would later be watching Marc's Bengals progress through the playoffs.) I called an "audible" and found "True Grit" the original John Wayne version) on her corner bedroom television. Our Stepdad Bob loved Westerns and I suppose she did too having them always on in the background on our childhood home on Detroit Circle. We watched the whole movie and I was impressed with how attentive she was to the film. Our last movie together.</p><p>50) The "gift" of San Diego which is perhaps my favorite place in the world. I mentioned the solo trip we went on (that included a trip up to see Isabelle and the LaBrea Tar pits up in Los Angeles--the later leg of the trip, I remember jigsaw puzzles in the dimly lit house and just how many TV channels they had in LA!) San Diego is also synonymous with my "favorite aunt" Marge (no disrespect intended towards Aunt Joan and Aunt Nova--they are equally special.) </p><p>Trips and memories to San Diego are too numerous to mention (walking home from the movie theatre as kids because Fantasia was "boring," Aunt Marge flashing us from her and Claudia's bedroom window, many a "Camp Margarita" as an adult in Marge's comfy Point Loma home, and hosting Todd and I when we watched Denver win their first Super Bowl (XXXII) at Chargers San Diego Stadium.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp2CxMu8az69jg_m1zhEtwMkBVEG6-NxFs4-L_cbolTl8ezYv5PQXUYo3ECZBYlPnnKKXo7O2tjft3UJbrOda9Qot1um3IzpwZcabsKeZretocAKTOmfuq7klAs6lrucYls6PGzVUYZ6L6sFH4h4YjhDk1YSoFIY6d2xXZw52ygeG_q8jjIQbDE_-3hg/s4032/20220101_130913.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2268" data-original-width="4032" height="362" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp2CxMu8az69jg_m1zhEtwMkBVEG6-NxFs4-L_cbolTl8ezYv5PQXUYo3ECZBYlPnnKKXo7O2tjft3UJbrOda9Qot1um3IzpwZcabsKeZretocAKTOmfuq7klAs6lrucYls6PGzVUYZ6L6sFH4h4YjhDk1YSoFIY6d2xXZw52ygeG_q8jjIQbDE_-3hg/w640-h362/20220101_130913.jpg" width="640" /></a></div><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>By pure happenstance, my IRun4 and eventual Team Hoyt run buddy Liam is also from San Diego. If it weren't for the fact that my mom and Marge met Liam (before I did,) I don't know that I would have flown out to meet my virtual run buddy Liam on his 18th birthday that turned into eleven races together. This last weekend, Liam's mom called crying. Dad Fabian and Liam had completed their first triathlon and thanked me for that gift. Without my mom, there likely would not be the most rewarding part of my run career racing with Liam.</p><p>As for Auntie Marge, she has (always been, and is now) wearing the "Queen Mum" crown. No pressure Marge, and don't worry, it fits you well. </p><p>Love you mom, and I will miss you this Sunday and every day after.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5BMXhwn35vBkslCNJ3bxEsvUXBRrTbeF1TCGgmKt8PSIqemsMGAbVwe5cnDtkR0eRgKrpcTAp48ODlCIAwADRxD0_Gn6Mld4WGRrioKONmNcxqHVL0s0GwWo8rzoADVhvhEEtPGlvcS5gGIsd4BRoFD1_TDKo-xluWb-4ipkUUPUoGe4ytQr0gxkNyg/s3648/20211113_164709.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3648" data-original-width="2736" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5BMXhwn35vBkslCNJ3bxEsvUXBRrTbeF1TCGgmKt8PSIqemsMGAbVwe5cnDtkR0eRgKrpcTAp48ODlCIAwADRxD0_Gn6Mld4WGRrioKONmNcxqHVL0s0GwWo8rzoADVhvhEEtPGlvcS5gGIsd4BRoFD1_TDKo-xluWb-4ipkUUPUoGe4ytQr0gxkNyg/w480-h640/20211113_164709.jpg" width="480" /></a></div><br /><p><br /></p><p></p><br />
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com2tag:blogger.com,1999:blog-8476235401101578979.post-14091726093731303922022-04-25T16:49:00.004-07:002022-04-25T16:50:34.138-07:00Meme Monday: I Don't Like Mondays<p>Back in my running days, I'd occasionally post "Meme Monday" that usually (at least tried to) post something inspirational regarding running, training, or chasing the unicorn (<a href="https://www.baa.org/">Boston Marathon</a>.) No...I haven't given up on getting these pages back to run-centric topics and journeys but that's just not where I am as I continue to try and find answers for Long Covid.</p><p>I did take a break (not sure how long) from social media, so if you're coming by here (thank you and please comment) I felt I owed at least a mini update. Not before posting today's meme; Long Covid, So Over It!)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt2y_f8AGr4Xu6uxMWre6z7NG-14dSIQVvk9EU92Uq750mKVEaIUtp0QpWwXdI6Nj0FnyH1BEAFheRUmBBvuAfdbKR9XsrrkILBoDg6sw79MKsIpKyHaiYuKfnidnfF--t44YbXZrWAEQs0SYHbrjmwHBZmmQLCtgdiz5Ktny0lzEi_hIHyfDfYMFvCg/s576/so-over-it-SBM.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="576" data-original-width="576" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt2y_f8AGr4Xu6uxMWre6z7NG-14dSIQVvk9EU92Uq750mKVEaIUtp0QpWwXdI6Nj0FnyH1BEAFheRUmBBvuAfdbKR9XsrrkILBoDg6sw79MKsIpKyHaiYuKfnidnfF--t44YbXZrWAEQs0SYHbrjmwHBZmmQLCtgdiz5Ktny0lzEi_hIHyfDfYMFvCg/w400-h400/so-over-it-SBM.jpg" width="400" /></a></div><br /><p></p><p>In terms of health, sadly (and not sure why) things seem to be worse and trending worse. I've had more spells of shortness of breath, extreme fatigue (more daytime naps,) cognitive issues, chest pain, and some new freaky stuff--including pain "shooting up" into my neck. Sleep (or lack thereof) remains a nightmare without meds as the burning feet and restless legs prevent any normal night of sleep.</p><p>On the "not giving up front," I am making yet another trek to Mayo Clinic next week and have follow-up scheduled with my local neuropathy doctor at <a href="https://www.uchealth.org/">UC Health</a>. I have yet to meet F2F with my local neuro since I was officially diagnosed with small fiber polyneuropathy. </p><p>Part of my social media break is that googling " small fiber polyneuropathy" in bed at night turns up some pretty scary sh*t including people who have had to amputate due to progression of this (sub)disease. I use the term "sub-disease" as the neuropathy is one of a few official (additional) diagnosis I've got since being labeled as having "Long Covid." Others include ME/CFS (more so the CFS component as diagnosed by <a href="https://www.mayoclinic.org/">Mayo Clinic,</a>) and clinical depression.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHPSCSubj9geKbunL5J5ZHzbu-Xwa_ntM1690ofLcap7ybbCungINZcM6XAGOfc7b0gZ8XZ4sLBAPTwVzwhZYhz5ryLt1Dcvc6dZK8oU-d6O-bJGYdZ8wCHCYcJH3JHvUnGPWIcTzpX6uPq7lhQS9gYMlzEkGaPimuHDko9DSBz_hO7FhD-0NAMsQjmA/s851/soc-media-long-covid-vacation.gif" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="851" height="237" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHPSCSubj9geKbunL5J5ZHzbu-Xwa_ntM1690ofLcap7ybbCungINZcM6XAGOfc7b0gZ8XZ4sLBAPTwVzwhZYhz5ryLt1Dcvc6dZK8oU-d6O-bJGYdZ8wCHCYcJH3JHvUnGPWIcTzpX6uPq7lhQS9gYMlzEkGaPimuHDko9DSBz_hO7FhD-0NAMsQjmA/w640-h237/soc-media-long-covid-vacation.gif" width="640" /></a></div><br /><br /><p></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p>Part II of my reason for taking a social media break is that I felt I was becoming that old guy that yells at kids to "get off my damn yard" to kids...but in this case, I'm bitching about Marjorie Taylor Greene on Twitter. I did not like the constant negative tone I was throwing out so I decided a break was needed.</p><p>Deep breath...namaste...</p><p>A few things I am chasing in addition to Mayo Clinic; tomorrow I'm going to <a href="https://www.braincodecenters.com/">Braincode Centers </a>in Denver who offer neuro (QEEG) brain mapping and neurofeedback therapy. I'm hoping this can at least provide a baseline on my cognitive issues and through the neurofeedback therapy; try and remap the brain to help with symptoms and depression. As one of the Dr's (and I'm paraphrasing here,) the brain sends out "fire engines" to parts of the body where there's no fire but creates one in the process; thus, the multisystem nature of #longcovid. </p><p>Other topics of conversation with my medical team include <a href="https://www.reuters.com/business/healthcare-pharmaceuticals/case-testing-pfizers-paxlovid-treating-long-covid-2022-04-18/">Paxlovid</a> (used to treat Epstein Barr virus) and <a href="https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/behind-the-headlines/coronavirus/what-coronavirus-treatments-are-around-the-corner/could-an-everyday-drug-stop-dangerous-covid-complications">blood thinners including clopidogrel (to help with micro clots</a>)--both seem to be promising on the research front. I clarify medical vs research as fundamentally, doctors are just starting to define long Covid but are a long ways off from having a universally accepted treatment. What I do know is that what I'm doing (two failed attempts at increased exercise and prescriptions) are not working. Stay tuned...</p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-59424905662298111952022-03-30T09:53:00.000-07:002022-03-30T09:53:55.360-07:00Long Covid: Seventy Two Hours<p>There's a fine line between constantly bitching about something and reporting what's accurate in my world. Unfortunately, the later looks more like the former. </p><p>Aside from my Long Covid "healing journey" which is beginning to sound like a ridiculous phrase or an oxymoron (aka Jumbo Shrimp, Army Intelligence, or the TFG claiming to care about the average American) I try and maintain a shred of hope and dignity along the way. Unfortunately, puppies and rainbows and progress aren't exactly a thing lately.</p><p>At one point in my journey early on, I'd kindly asked (notably family members) to quit asking me, "how are you feeling...are you doing any better?" Mainly because this thing has moved at a glacier pace without improvements and as someone with "conflict avoider" tendencies, sometimes I just don't want to talk about it. Going to a larger event like a wedding where I'd see a bunch of people I haven't seen in awhile gives me angst as I get tired about talking how tired I am.</p><p>The fact is I'm unemployed, on disability, as someone with a chronic illness.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJNU34byGe-a0gP151SaCLeKt-XCpZJ8aBEl1pfjsZM6yZ9fDu9_lsZV_64OxfcOW0zpLhQ2Rnvmu7FZK3_vzJvxSWW9FZ1PBsEqT-gtjB7d5N0iubrw0GrCj9BwfeC4RNmZvv-c_NvPwxkBCWzw1Y6j6X4sRCNOEgeLJzzEUrxBn6Aa-1uJJjLdNu-A/s592/SBM-Windfall.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="592" data-original-width="400" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJNU34byGe-a0gP151SaCLeKt-XCpZJ8aBEl1pfjsZM6yZ9fDu9_lsZV_64OxfcOW0zpLhQ2Rnvmu7FZK3_vzJvxSWW9FZ1PBsEqT-gtjB7d5N0iubrw0GrCj9BwfeC4RNmZvv-c_NvPwxkBCWzw1Y6j6X4sRCNOEgeLJzzEUrxBn6Aa-1uJJjLdNu-A/w432-h640/SBM-Windfall.jpg" width="432" /></a></div><br />Perhaps to share insight into the world of someone with Long Covid, it would be helpful to share seventy two hours of the life of someone with Long Covid.<p></p><p><b>Saturday</b></p><p>Wanting to maintain some level of normalcy, I'd agreed to meet with a few good friends including a good friend (Beth) from High School, a mutual friend (Cynthia,) my wife, sister and her husband for dinner. Evenings are my worst and sadly I typically refrain from doing anything at night but that's not entirely fair to my wife either as she's bearing the brunt of "income earner" and (even before getting sick,) I'd joke that there won't be a third Mrs. Godwin.</p><p>The day leading up to dinner was "laying low" as overactivity would have cancelled or lead to a miserable dinner--the last time we'd met when Beth was in town from Singapore, my body was raging the moment I'd sat down for dinner in the restaurant and I knew I was not a fun person to be around.</p><p>Symptoms were tame on Saturday, (or am I just getting used to this?) I mainly felt the fluish body aches (arms sensitive to the touch) throughout the day. That evening, I was closest to my normal self in that type of social situation I'd seen in awhile. To the point that I wondered, "am I turning the corner on this thing?" I'd later have "Lucy" pull the football out from under "Charlie Brown." </p><p>Regardless, I went into the night feeling it was a better than average day. I was able to take some sleep medication before bed as the last few weeks and months my sleep has been horrific--mainly with the neuro issues (restless legs, burning feet, and chest spasms.) Nighttime is also when evil thoughts enter my mind when I constantly look at the hours go by without falling asleep.</p><p><b>Sunday</b></p><p>The one consistent thing with long Covid is that if you overdo it--even slightly, your next day you will pay for it--medically known as PEM (or post exertion malaise.) That was the case here as all the long Covid "devil knobs" were turned up on Sunday; shortness of breath, body aches, fatigue, and "nutty things" going on with my legs. I fell down the stairs for the second time in the last few months as my equilibrium is off. Last time resulted in a broken toe, this time was a contusion (goose egg) and bruise on my forearm.</p><p>Wanting normalcy and some fresh air, I took the twin dogs for a walk. Breathing was a major challenge which still feels alien to me as a previous decent/high-performing marathon runner. A walk around the block should not have me heading to the couch.</p><p>With a <a href="https://newsnetwork.mayoclinic.org/discussion/living-with-pots/">POTS</a> tilt table test planned for Tuesday, I couldn't take any medication or supplements for 48 hours prior--that meant no sleep help. Depression was thick as I tried to slip into sleep as I turned on our <a href="https://blisslights.com/">Bliss Lights</a> stars on the ceiling (yes, just like you'd try and get a child to sleep) along with a <a href="https://tidal.com/">Tidal </a>(we bailed on Spotify due to the gross and deadly podcast drivel from Joe Rogan) on our <a href="https://www.sonos.com/en-us/home">SONOS </a>system. Ten, eleven, midnight, one AM, two AM all passed without falling asleep. Horrible thoughts entered my head; </p><p>"Will my life ever come back to what it was?" </p><p>"Why would my wife still be with me?"</p><p>"Will I ever get my brain back?"</p><p>Most of the answers spiraled me into a deeper depression abyss. I should point out that I think about mortality, but I'm too much of a coward and would not want to ruin other's lives (notably my wife and kids) by intentionally cutting my life short. Sorry for the brutal honesty, but this blog is cheaper than therapy.)</p><p><b>Monday</b></p><p>My week started with "one battery square" as no sleep really puts me "behind the eight ball" for my day as I'm sleep deprived on top of exhaustion. As I shared in my last post, "<a href="http://www.seekingbostonmarathon.com/2022/03/dear-pete-why-did-you-sell-my-mortgage.html">Pete, Why Did you Sell My Mortgage</a>," (cue the Boomtown Rats' "I don't like Mondays) I received my third letter from <a href="https://www.bsifinancial.com/">BSI Financial Services </a>(fancy name for a third rate collection agency) threatening Foreclosure on my house. You can read the other post, but short version is I applied for CARES Act Forbearance on our loan with <a href="https://www.ulc.com/">Universal Lending </a>who promptly sold our "paper" to BSI. "Thank you sir, may I have another!"</p><p>My brain fog was especially thick on Monday and I've been pursuing a holistic approach to working on the center of my neuro issues--the brain, with <a href="https://www.braincodecenters.com/">Braincode </a>centers. Hard to explain but fundamentally getting a "baseline" of brain function that would be followed by treatments to recondition the brain. Makes some sense as one of the Dr.s at <a href="https://www.mayoclinic.org/">Mayo Clinic </a>described "long covid as the brain sends signals to the body with "stress" that's not necessarily there. Think of it as this;a small town where ambulances and fire trucks are sent out to squash fires and floods and mayhem but those maladies aren't there...but those trucks wind up creating the issues in the process.</p><p>Anyhow, strongly considering it, but it isn't cheap. A common dilemma among people with Long Covid--loss of income combined with high cost of medical care.</p><p>In terms of symptoms, all the "knobs" were turned up again which sent me to bed in the afternoon to curb the body aches, fatigue, and severe shortness of breath. In terms of sleep, Sunday night my body was hot--not in the Instagram influencer kinda way, but in the body temperature regulation sense. Monday night, I couldn't get warm so I used a heating pad and all the blankets. I woke up dripping in sweat. Sleep was better--perhaps a few hours of sleep before I headed out to <a href="https://www.nationaljewish.org/home">National Jewish Health</a> for my POTS Tilt Table test.</p><p>Mental health remained poor on Monday as I was off the anti-depressants (as required for the test) or perhaps it was from watching <a href="https://www.netflix.com/">Netflix</a>' "Windfall" and "Deep Water" (spoiler alert--neither are comedies or healthy marriage shows) over the weekend. In the case of my Windfall metaphor, Jason Segel is the Covid monster that comes to visit Jesse Plemons (me as a not nearly as rich but equally rotund Jesse,) and my wife taking a break from "Emily in Paris" to star as my technology wife (Lily Collins.)</p><p>Perhaps this gives you a better idea of the daily life and struggles of someone with Long Covid. Mine is one of the worst in terms of length (now 26 months,) and severity, but honestly, mine is one of the better ones as others have not survived the depression aspects and are completely wiped out financially struggling with loss of jobs/careers and inability to get (even) Social Security disability.</p><p>Sorry...I know this is a tough read, but it's a day in the life. Tonight? (written a week ago) Rallying to meet my daughter for her birthday dinner. She (and my wife, and boys) keep me going.</p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com0tag:blogger.com,1999:blog-8476235401101578979.post-8283871168737196942022-03-16T15:39:00.001-07:002022-03-16T15:42:46.835-07:00Dear Pete: Why Did You Sell My Mortgage?<p><i>Sorry for the lapse in my long covid updates. The last six weeks have been rough having lost my mother unexpectedly in February due to a massive stroke and dealing with my dad who has dementia and failing health. This is while moving my family out of our home in Denver to live with family for financial measures. This is to "batten down the hatches" to weather the financial storm related to my 26 month battle with Long Covid. Today, I will focus on the financial devastation that many grapple with. I start with a letter to the CEO of my (previous) mortgage company, Universal Lending.</i></p><p>Dear Pete (Lansing:)</p><p>First let me introduce myself. I am a married Colorado native with three young adult kids; one still in college. I (used to be) a marathon runner and triathlete who enjoyed racing with my special needs buddy Liam as part of Team Hoyt San Diego.</p><p>Like many, we refinanced what I thought was my last home in December, 2020 with your company, Universal Lending headquartered in Denver, Colorado. Re-financing was the start of a number of financial moves we made to adjust to my new world as someone suffering from Long Covid on disability. If that term is not familiar to you, Long Covid is a post viral illness that affects up to 1/3 of the people that get Covid that "attacks" several systems in the body.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhxiqpl5rYMFdU7_lSHNBqGykxLQNxvkJcGlHCoXb8KcGFmPuY73QlUW8etQfCGb6ySsltfzmNsy8gBY9PHwvl68Uoh8fUub6d1gLlwGXo4XqwpeBeHk96f2XRE6HCaLnDWO0gwyIXEcZnBJMd1qwUtOpX5ZfpTOBgWzD4eViWd_eMNBrsruyRot7RvNg=s759" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="651" data-original-width="759" height="343" src="https://blogger.googleusercontent.com/img/a/AVvXsEhxiqpl5rYMFdU7_lSHNBqGykxLQNxvkJcGlHCoXb8KcGFmPuY73QlUW8etQfCGb6ySsltfzmNsy8gBY9PHwvl68Uoh8fUub6d1gLlwGXo4XqwpeBeHk96f2XRE6HCaLnDWO0gwyIXEcZnBJMd1qwUtOpX5ZfpTOBgWzD4eViWd_eMNBrsruyRot7RvNg=w400-h343" width="400" /></a></div><br />After trying to work through a 100 day fever in 2020, I filed for FMLA (Family Medical Leave Act) then subsequently filed for short-term disability, and then long term disability. After over 100 Dr. appointments, and three trips to <a href="https://www.mayoclinic.org/">Mayo</a> Clinic, I was officially diagnosed with Long Covid. Symptoms include chronic fatigue, neuropathy (that affects my feet, legs, numb fingers, and now chest spasms.) Brain fog is "thick" as I struggle with words at times and trying to remember simple things like what book I'm trying to read, or even the title of the book.<p></p><p>Like many Americans in my position, we took advantage of the <a href="https://www.consumerfinance.gov/coronavirus/mortgage-and-housing-assistance/help-for-homeowners/learn-about-forbearance/">CARES Act </a>to put mortgage payments on hold. Your company quickly and graciously approved my forbearance/deferral in December of 2020, but <a href="https://www.ulc.com/">Universal Lending</a> (I can only presume) sold my mortgage to <a href="https://www.bsifinancial.com/">BSI Financial Services</a> which on the surface seems to be a mortgage company but in practice behaves as a debt collection agency.</p><p>Within one week of taking over the loan, I received a letter from BSI stating I was in default with the loan with "notice prior to residential foreclosure."</p><p>Let me point out that my credit score is in the 800's and I can't think of a single late mortgage payment in over thirty years of owning a home in Colorado. You may ask "why are you bringing this to my attention when we no longer own your loan?" Good question Pete. I will quote your company's mission statement of "People Helping People Achieve Their Dreams." Help me understand how losing a home or homelessness (I don't think it will come to that but have to take the certified letter seriously) is helping achieve my dreams?</p><p>Short of Christopher Reeves' Superman flying backwards to change events in time, I can't change the position I'm in financially, medically, or the resulting clinical depression that accompanies my plight. I can respectfully ask you to reconsider the barbaric "selling of paper" to disreputable organizations like BSI that adds a new layer of hell to my world.</p><p>My second request is you buy back my loan so I can deal with a reputable organization vs BSI who had a <a href="https://www.housingwire.com/articles/49167-cfpb-settles-with-bsi-financial-services-over-numerous-mortgage-servicing-issues/">Consumer Financial Protection Bureau lawsuit </a>filed in 2019 for improper business practices and who boasts a one star rating out of sixty reviews on <a href="https://www.consumeraffairs.com/finance/bsi_financial_services.html">Consumer Affairs</a>. It does beg the question of why you have a business relationship with them?</p><p>Believe it or not, I don't try and spend my days on disability doing nothing but complaining; I've used my (what used to be a) running blog as a platform for advocacy for awareness, research, and treatment--unfortunately we are still in the "research phase" of this nightmare.</p><p>Businesses like Universal Lending can do better by me and many others in my situation. Happy to get on the phone with you or someone on your team to help educate you on my situation and other Coloradoans that likely rely on your company to (stealing your line)"Achieve Their Dreams."</p><p>Regards,</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhpHlIVdJ_VQouGcxag8W9suXPxyWu1gemFrJSjIFurIOfolvjTZxdntjz-P3Voz21UFNpf22VD5O-fDfKBAdDHrwNmQnzsGG5xUum6JuBRYlP-Ae3jn52ZeBnQPPvW1VdLFBk8iUXU1tVpUszc2UqzowgL_BzIbybv1VEcDbzTD9WQubSWGGchyqECzA=s668" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="134" data-original-width="668" height="64" src="https://blogger.googleusercontent.com/img/a/AVvXsEhpHlIVdJ_VQouGcxag8W9suXPxyWu1gemFrJSjIFurIOfolvjTZxdntjz-P3Voz21UFNpf22VD5O-fDfKBAdDHrwNmQnzsGG5xUum6JuBRYlP-Ae3jn52ZeBnQPPvW1VdLFBk8iUXU1tVpUszc2UqzowgL_BzIbybv1VEcDbzTD9WQubSWGGchyqECzA=s320" width="320" /></a></div><br /><p><br /></p><div style="text-align: left;"><br /></div><div style="text-align: left;">Ty Godwin<br />seekingbostonmarathon.com</div><div style="text-align: left;"><br /></div><div style="text-align: left;">cc: <span> </span>NBC Nightly News</div><div style="text-align: left;"><span> </span><span> Senator Hickenlooper</span><br /></div><p><br /></p><p><i>Footnote: There are other financial aspects that people with long covid have to endure. I am actually one of the luckier ones as many suffer loss of employment, homes, income, and careers. My career is on hold and if I'm honest, I don't know I can return to the high performance I had before Covid. Most of the Long Covid people I talk to aren't as fortunate as I am as they are limited to filing for Social Security Disability with many are getting rejected. My disability checks are less than half of what I was making--most people can't maintain or survive with a 50% pay cut and while I have this in place, reviews of my insurance benefits are frequent leading to additional stress not knowing if I will continue to have this "safety net." Compound that with the high cost of COBRA Insurance (mine started at $2,000 a month) makes for a house (pun intended) of cards.</i></p><p><br /></p>
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Seeking Boston Marathonhttp://www.blogger.com/profile/07153663075782756177noreply@blogger.com6tag:blogger.com,1999:blog-8476235401101578979.post-86572384713766190012022-01-14T11:38:00.010-08:002022-01-14T11:56:25.929-08:00I Fell Into A Burning Ring of Fire<p><i>I Fell Into A Burning Ring Of Fire. I Went Down, Down, Down, And The Flames Went Higher. And It Burns, Burns, Burns, The Ring Of Fire (Johnny Cash)</i></p><p>There is no shortage of perplexing symptoms when it comes to #longcovid. I can vividly (oxymoron given my brain fog) recall more than a few perplexing looks I got from doctors in the first two trimesters of my Long Covid journey--especially when talking about the early onset of what one would describe as "restless leg syndrome." My "crazy legs" are famous as featured on <a href="https://www.today.com/video/struggles-of-covid-19-long-haulers-are-focus-of-new-studies-108959813611?playlist=mmlstodayarchivestuesday-nnd">NBC's Today Show </a>and with <a href="https://www.nbcnews.com/nightly-news/video/u-s-launches-two-clinical-trials-for-coronavirus-antibody-treatment-89546821950?fbclid=IwAR1dyunqiQdJFiCnPwShWcg3HdUbbCshCTzhDuFc3V118HeQco6Xfx4LJHI">Lester Holt on NBC Nightly News</a>.</p><p>My story is not unique as </p><p>1) Long Covid is still in it's infancy or research phase--in other words, little knowledge or consensus consists in the medical community with regards to helping patients like me but there's emerging clarity on the "groupings" of symptoms and at least some emerging theories. </p><p>2) Small Fiber Neuropathy has emerged as a common "umbrella" symptom of Long Covid. When I say "umbrella" I mean there are a number of "sub" diagnosis that can emerge; in my case; ME/CFS, Clinical Depression, pre-load insufficiency of the heart, and "Merry F'ing (look what you got for) Christmas" you now have small fiber polyneuropathy.</p><p>3) According to the <a href="https://pubmed.ncbi.nlm.nih.gov/34766365/">National Library of Medicine</a>, "Our findings suggest that symptoms of SFN may develop during or shortly after COVID-19. SFN (small fiber neuropathy) may underlie the paresthesias associated with long-haul post-COVID-19 symptoms." Short of another scientific study, my growing personal network of Covid long-haulers are "rife" with similar neurology symptoms. </p>
<iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/FEvOIwi3RA8" title="YouTube video player" width="560"></iframe><div><br /></div><div>When I say, perplexing looks, I'm not unique in that many doctors have their narrow area of expertise; lung, heart, internal medicine, and general medicine. In those cases, they would try to explain one symptom, but couldn't begin to explain the breadth of crazy shit happening in my body. </div><div><br /></div><div>Early on in particular, I found Doctors would focus in on (as an example) my dyspnea (shortness of breath,) but would quickly change the topic or simply state, "that might explain the fever," or "that might explain why you can't breathe," but "I can't explain what's happening in your legs."</div><div><br /></div><div>I've had more than my share of "wild goose chases" including a sleep study to see if I have sleep apnea. Seriously? Yet, I did the test. </div><div><br /></div><div>Among the myriad of Long Covid symptoms, my "neuro issues" have lacked an explanation or diagnosis and have continued to morph over time. It started with the crazy legs and increase of burning feet. Since then, it has literally moved up the body to my now numbing fingers and chest spasms. On my first trip to Mayo Clinic, I met with one of their top neurologists and had a number of tests to try and explain what was happening. All results yielded no "smoking gun" including a small nerve biopsy.</div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiKpcQA68RFGc4uVqusm89IP_LQCjAh5YOXp0mQ0eDeSkq8QSMUeBC7TmNAYPlR8e9iA1Ubts8EoWHpyZziOMuSNSyW7gmsygq5GJBkfVS6KpJM5JX031t4j5aECBd3TvX3iOVxFqDOxj_a-9v_8SM9TE5v1qcnmoaunDs2PcNq7_crU1lOMomz-vh_mg=s932" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="694" data-original-width="932" height="476" src="https://blogger.googleusercontent.com/img/a/AVvXsEiKpcQA68RFGc4uVqusm89IP_LQCjAh5YOXp0mQ0eDeSkq8QSMUeBC7TmNAYPlR8e9iA1Ubts8EoWHpyZziOMuSNSyW7gmsygq5GJBkfVS6KpJM5JX031t4j5aECBd3TvX3iOVxFqDOxj_a-9v_8SM9TE5v1qcnmoaunDs2PcNq7_crU1lOMomz-vh_mg=w640-h476" width="640" /></a></div><br /><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>In fairness to <a href="https://www.mayoclinic.org/">Mayo</a>, their initial tests were a year into my journey and as pointed out above, a lot has changed since then. As I started my medical odyssey with <a href="https://www.nationaljewish.org/home">National Jewish Health</a> in Denver, I "circled back" to my medical team there and Dr. Goldstein suggested revisiting my neuro issues with Dr. Wicklund with CU Anschutz who had been working with NJH on a number of similar Long Covid cases in their neurology department. </div><div><br /></div><div><a href="https://www.uchealth.org/provider/matthew-wicklund/">Dr. Wicklund</a> re-ran a few tests including a brain MRI, ECG, another EMG and another biopsy. This time around, my tests were positive (or the opposite of what the orange false prophet once said, "I tested positively toward negative.") </div><div><br /></div><div>My lab report stated, "Abnormal nerve fiber density at all sites. Biopsies in left foot, calf, and upper thigh revealed nerve fiber density is significantly decreased." So, I got that going for me...which is nice. </div><div><br /></div><div>Since my first pilgrimage to Mayo, more consensus and clarity has emerged around my neuro symptoms including the chest spasms. This is a good time to point out, Im not a Dr and don't seek advise or treatment from these pages. It's been explained to me that there are small fibers (everywhere in the body and) in the chest that can begin to explain the (pun-intended) chest spasms that shake the bed just shy of a Regan MacNeil slumber party--just ask my massage therapist or my wife. (you'll have to Google the Regan reference.)</div><div><br /></div><div>One of my online #longcovid (and #FBLC--follow back Long Covid) peeps,<a href="https://twitter.com/j_b_kennedy"> John Kennedy</a> (no, not the Q reincarnated version) posed the question today on Twitter, "What's the "oddest" symptom (in his case, "warming" of private parts, or as he called it, "warm willy." I replied with a few of my own and said, "I'm more worried about Dead Willy." </div><div><br /></div><div>Not far from the truth. One of the many ways I've described what's going on in my body is "organs cooking inside my chest," and something in my bloodstream as many days my skin and body simply rage. This week has had a few of my worst days yet, but I'm trying to hang onto hope. At least with some identification of issues "under the umbrella," we can perhaps start looking at viable treatment.</div><div><br /></div><div>Minor issue is the next appointments available at Mayo and with Dr. Wicklund are in April and June. I guess that's why they call it long-haul.</div>
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