Meme Monday: I Don't Like Mondays
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 (Boston Marathon.) 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.
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!)
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.
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 UC Health. I have yet to meet F2F with my local neuro since I was officially diagnosed with small fiber polyneuropathy.
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 Mayo Clinic,) and clinical depression.
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.
A few things I am chasing in addition to Mayo Clinic; tomorrow I'm going to Braincode Centers 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.
Other topics of conversation with my medical team include Paxlovid (used to treat Epstein Barr virus) and blood thinners including clopidogrel (to help with micro clots)--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...