My Last Broken Bone was in Vegas
It's been more than awhile since I posted an update here on my Covid Long-Hauler journey. As a (I'm not ready to say) former runner, I'm not a treadmill hater. It does strike me as a familiar metaphor as I seem to be walking (not running) in place. In other words, more of the same; yet different.
I'd like to say I'm getting used to the questions;
"How are you feeling? or "Are you any better?"
Answers to the above are "not good," and "not really" and I have a broken toe. If I'm being honest, I'd say it's trending worse over the last few months as my body has evolved or morphed with symptoms as the devil plays with "knobs" each day on what torment awaits. I attended an old friend's "celebration of life" two weeks ago and ran into a great group of friends I hadn't seen in awhile. While it was great (and a mental boost) to see old friends, a large group of people I haven't seen in awhile prompts the well-intended barrage of questions and recommended treatments. This simply wears me out (physically and mentally.)
The first difference my friends notice is that I turned down the inviting glass of Chardonnay on a hot summer day. The condensation on the outside of the glass was luring me to indulge but alcohol absolutely wreaks havoc on my body. In the last four months, I drank once--on my birthday and paid for it; so I'm simply avoiding alcohol altogether. While they didn't make mention of it, I could tell that my answers were often delayed under the cloud of "brain fog."
On a given day my underlying base symptoms include a bed-ridden flu with a lack of energy. There's a strong resurgence in shortness-of-breath (SOB) and neurological issues--not that anything has really gone away, but evolved. I talk about a "pitch count" in that talking wipes me out and days where I might be on the phone more than usual "taps me out" especially as the day progresses--the devil turns the knobs up as the day goes on.
As far as my chest (and related SOB,) the sensations of "organs burning inside my chest" and the chest spasms is the part that's getting worse. There's been some discussion with my healthcare experts that "small nerves" in my chest cavity are creating the spasms or convulsions. The chest spasms used to be intermittently at night. It is now every night and most mornings. I used to say it's only when lying down, but that's no longer true. At its worst, it's a tortuous symphony as the feet burn (it's now 2:56 PM as a write and both feet are burning; the left worse than the right.)
The "symphony" part is when the feet, legs, arms, and chest all participate in the twitching, convulsing, and spasms while fingers go numb or fall asleep. It's a "neurological circus" inside my body. I have to admit, the chest stuff bothers me the most as a man in his fifties should be concerned when the chest goes askew (as shown in the YouTube video above.)
As I've entered my twentieth month of this bullshit, I try and explain to others and convince myself that my tenacity in business and in sports should serve me well; yet I'm human and prone to the emotional aspects of this journey. Depression and anxiety are "deep" and as worrisome as the other symptoms. My mind wanders and has delayed reactions to simple conversations which is the "brain fog" component of Long Covid.
Anxiety is also heightened as (I never thought I'd type these words) I'm un-employed for the first time in thirty years with no income since July when my short-term disability ran out. I'm now navigating a very expensive path with my COBRA application. COBRA allows for continued healthcare through Blue Cross, but it's not cheap--over $2,000 a month. In parallel, I'm "sitting on pins and needles" waiting for the outcome of my long-term disability. With one kid still in college and a mortgage payment you can see where the financial aspects of Long Covid can be devastating.
Sorry. Wish I had a better update but on the "upside," as part of my Mayo Clinic Long Covid Recovery plan, I continue to be diligent when it comes to my meditation (with a 119 day streak with my Muse app and EEG headband,) and modest cardio work on my Peloton. Oddly enough, walking is harder on me than the 15-20 minutes a day (a few days a week) prescribed on the bike. I'm not the guy (or girl) "out of the saddle" in the commercials with perspiration glistening off my well-toned body. I prefer the scenic routes as I peddle around the world which is a poor substitute for the world travels my wife and I used to enjoy, but I'll take it.
One of the other common questions I get with befuddlement from those inquiring is, "didn't Mayo help you?" "Yes, and no," I commonly reply. Yes, in that the recovery clinic and some of it's principles (like the cardio and meditation) help me, but it's not a cure. There has been a "shift" in medications around the chest circus as I'm on a new histamine treatment that's tied to many articles you'll find around MAST cell activation related to Long Covid. Candidly, the "jury is still out" on that providing any benefit. I've also started taking Niacin as NAD+ deficiency is another common thread.
I had an infusion of NAD+ at Hydrate IV Bar in Denver which really messed with my body as did the first dose of Niacin as my body broke out in a crazy upper body rash. Now would be a good time to say that I'm NOT an expert and you should consult with your Dr. and credible sources such as the CDC, WHO, and NIH. AND DON'T INGEST HORSE MEDICINE (as I pointed out in my John Oliver style VBLOG post in July.)
In addition to all the above, I'm "walking in place" without much progress and if I'm honest, some increased symptoms that lead to a decreased quality of life. I use these pages and some of my Long Covid artwork as my therapy to get by as I continue my work and research options within the medical community. I also hope that my story serves as an advocacy for the upwards to ten million in the US alone suffering from Long Covid. To that end, I'm hoping Senator Hickenlooper returns my message. There's much work to be done as a nation in terms or research and relief for those that walk in my shoes.
Speaking of walking; I skipped over the broken toe part. Equilibrium is not the greatest especially in the morning. The last time I broke a toe was in Vegas (which was a much better story.) This one was walking down a short flight of stairs a bit dizzy; slip, slide, broken pinkie toe. Ouchie mama!
With my last run (albeit a rough two-miler) fifteen months ago, and my last race over two years ago, I finally moved the majority of my run gear (tanks, shorts, singlets and Adidas run shoes) from my closet to a garbage bag in the basement. This isn't a symbol of giving up or defeat, but rather my new reality. Looking at the large inventory of un-used run gear every day was too much to bear. No plans for a Seeking Boston run gear garage sale just yet. The healing journey continues.
Footnote: Lastly, I'd point out that I've never been one to extend a "tin cup" looking for any help, but if anyone happens to know one of the billionaires putting "dick rockets" into space, perhaps they can divert some of their uniform budget (who wants a dick patch on their blue jumpsuit anyway?) to my GoFundMe page. My close circle of friends and family have all given generously, and I don't want any more help other than perhaps to try and instill some normalcy in my days.