Hold the Mayo, round II deterioration
Turns out I wasn’t actually at the Long Covid program at the Mayo Clinic but with an internist. My insurance only covered 3 days after I begged them numerous times that yes, I am dying, and they aren’t fixing me, just diagnosing me with more and more severe conditions. Thanks for that—the Mayo wanted 6 months to a year. Now I’m back to nearly bedbound, and I can’t work or drive myself.
The 3 days were just about like this, mind you; I’m 44 (still damn Roosevelt, though): https://youtu.be/mN6nC4EXmaA?si=uULMCxIjyNfjcsAm
I had to pay for a follow-up with an internist out of pocket because it was too much for insurance to try to get it covered for more than 3 days. The Mayo wanted 6 months to 1 year to figure it out. My PCP wanted them to treat me. My insurance squashed this because it was inconvenient for them to do anything. All after I had several meltdowns about my deteriorating condition.
Autonomic nervous system dysfunction is a helluva ride, but I didn’t get to do that ride at Mayo (unless you count the sweat test; holy cow was that intense). The cardiologists I met were pretty good; I chatted with them about the cardiac remodeling happening with my heart, metabolic syndrome, and the HTN. They also noticed an adrenal lab slightly off.
Anyway, some silver lining. I did get into the Long Covid program in July. We’ll see what state my health is in then, and what insurance decides.
Two steps behind
My long COVID playlist keeps getting bigger. And I still have double vision. So much for moving past that borderline awful song (sorry, Foreigner).
But let’s talk about the latest addition. Def Leppard, Two Steps Behind. https://music.youtube.com/watch?v=_cQcjm5SRBQ&si=u3HiFvK5BVuVTNJx
The playlist in all its glory: https://music.youtube.com/watch?v=_cQcjm5SRBQ&si=GAmTCVpFlc-tve9N
My duct-taped care team is always behind me. They don’t try to meet me ahead but wait two or more steps behind. It’s not a bad thing, I suppose; at least I have insurance still, for now.
The good news
- I have surgery coming up for a PLF repair (I didn’t believe my original care team and kept pushing for answers)
- I’m hoping for a lot of relief, but not holding my breath
- I’m in the Long Covid program at Mayo Clinic in July 2026, finally
- I’m getting a new neurologist in September and some assessments and scans in July, concurrently with the Mayo.
No more Scripps drug trial, new drug
I am separated from my immediate family, and living with family that is as supportive as they can be. I can’t keep up a trial, and coordinate my own care. I’m nearly bedbound again. Likewise, I had to let this go. I hope the research continues to progress in the treatment of Long Covid. Not only that, but I would have been a great fit for the drug itself (no idea if I actually got it) with my new metabolic syndrome (despite not having a lifestyle that doesn’t fit it at all).
That said, my ENT has put me on Emgality for migraines. So, I’m trading one injection for another.
I’ll update on surgery next
Hopefully I have good news to share on the PLF surgery coming up. I was able to get cleared pre-op, barely, with all the health stuff I have going on. It took 18 months, but I have a surgery in sight finally.
I intend to put my treatments up here soon too. It’s such a cluster; it’s difficult to tell. What works for one may worsen things for another. Also, new symptoms like trouble swallowing, worsening vision, and vomiting and heaving. I’m still walking with a cane for the most part and slowing down.
Stupid decisions
I don’t have the bandwidth for the whole bit, but this has been the most difficult thing I’ve ever encountered. I have never felt more alone. I started to give up and run away. Likewise, I confessed to mistakes I’ve made so people would leave me, only to realize I left them. I did a lot of damage and hurt numerous people who love and care for me.
I spent most of my life running toward danger. When you don’t know what it is, it burns the mind. My autonomic nervous system has yet to find an exit, and it’s killing me with metabolic syndrome, low quality of life, chronic fatigue, and pain, all getting worse each day.
Getting help was hard, but worth doing. I don’t know what tomorrow brings, but I know I made some terrible mistakes I hope I get to make up for, if I can only get better.