Mayo-Clinic on A long dance with Rona

Mayo Clinic Long COVID Program: Insurance Barriers and Leaving the Scripps Trial

Wed, 06 May 2026 00:00:00 +0000

Mayo Clinic Long COVID Program: Insurance Only Covered 3 Days

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):

Teddy Roosevelt - still damn Roosevelt though

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.

Falling Behind: Long COVID Care Coordination Gaps

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.

Def Leppard - Two Steps Behind

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.

Upcoming Long COVID Treatments and Appointments

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.

Leaving the Scripps Drug Trial, Starting Emgality for Migraines

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.

PLF Surgery Update Coming 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.

The Mental Health Toll of Chronic Illness

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.

My duct taped care team, a new direction 🩺

Sun, 29 Mar 2026 00:00:00 +0000

Analogies, cause

Before my deterioration, I used analogies a lot. I related to music a lot (part of recovery, as I mentioned before). This has come back, to a degree, and I think it is fitting for you all, too. That said, I’m looking at going back on disability from work, and walking with a cane.

Nobody wants this

I am not a doctor, so I can’t speak for one. That said, I can say what I have to say about myself and my experience. I didn’t want this. I don’t think anyone wanted this.

What I think my duct-taped care team has been doing (my opinion—stupid poor communication and drama shit):

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A post shared by Netflix UK & Ireland (@netflixuk)

In the image below, I left out ENT, but they’re actually hiding behind those boxes saying, “You’re fine, and not having a stroke.” Constant self-patient driving and organization is and continues to weigh heavily upon me. All while dealing with constant brain fog, worsening hearing and vision issues, dizziness, falls, and, of course, pain. Working full time, being a husband, and being a parent.

How Cee Lo Green fits in to United States Health Care and my Long Covid playlist

The girl I love is the care I, and you all, deserve. The pain in my chest is my stage II hypertension and, ultimately, worsening metabolic syndrome. Why do my health care providers want to hurt me so bad?

Cee Lo Green - Forget You

More ERs

Update: I went to the Urgency Room last night for some strange red spots on the left side of my scalp, and chrustiness and discharge above my left ER. DXed with Herpes zoster, and now on Valtrex.

I went to the ER last week for worsening hearing loss. They said you’re probably not getting permanent hearing loss; but it is a neurological cause. Tube clear, minus a dark matter—this is most likely perilymphatic fistula (PLF), more to come on that—again, what do I know, I’m not a doctor. Cool, can you review a CT scan done last time when they forgot a critical piece of information? No. Makes sense, emergency medicine and all.

I have been having chest pain for two weeks. Ended up back at the ER yet again. I’m fine for now in cardio land (sure, I have metabolic syndrome and stage II hypertension, but that’s not emergent). No interest in anything else that would be an emergency (worsening hearing loss, double vision, dizziness, falls, etc.). Although you get a fall warning band for staff to pretend to care. Fine, emergency medicine, blah blah, don’t care about the other emergent symptoms if you’re not dying (but I am, it’s just not the emergent dying they need to do anything).

A new old primary returns

I have been working with a primary care provider (PCP) for most of 2025. I had to switch; I couldn’t drive, so I went with one who seemed to listen to me. They are overworked, of average intelligence, and a puppet to do things for me (which, in hindsight, was needed at the time). I guided my own care through my 2025 PCP. Experimental treatments? Sure, they saw the medical journals I compiled for them, even once saying, “You’re doing my job.” only to later ask me, why did they prescribe those prescriptions again?

The new old one, I’ll call Chuck, always listened, had compassion, intellect, and while we didn’t agree 100% on everything, they were an ally. I’m glad to have an ally back.

Runaway Train, and while it’s extremely relevant to me right now

Soul Asylum - Runaway Train

So, this duct taped care thing isn’t working. I now have metabolic syndrome, worsening hearing loss, and autophony—the neck pain, crepitus, and other issues roll on, despite nearly weekly PT, acupuncture, massage, and light neck chiropractic. My body and mind have adapted as best they can. I used to be a first responder; I was trained for perceiving and responding to threats, yet this all falls pretty flat when I can’t see the threat, so I sought it out.

Don’t be such a pussy, pussycat

I did a thing in late February 2026. Yes, the line above is from The Pitt, and my favorite character of the show, Myrna White—I don’t actually mean this to apply to anyone but myself 😄

I started on a journey going through all of my medical records for the past 16 months, and then beyond. I found anomalies, of which I posted here before, but that is just the tip of the iceberg. Before I jumped in, I realized that I am, in fact, dying; the ongoing autonomic nervous system problem is causing chaos in my body, and I will eventually succumb to this damage. The good news on the heart front from the recent ER visit is I still have time.

Adderall, research, and forensics

I used to work in forensics (not the pathology kind, the digital one), which still drives a lot of my curiosity, and was possible thanks to Adderall (used with a prescription and appropriately, of course). I paid for it in chronically low HRV for several days later, which likely ties into my low corticosteroid problem. Have you mentioned HRV to a care provider? They are usually clueless and dismissive about this to me. So, I continue to manage it on my own with the Scripps drug trial Garmin watch (which is an estimate at best).

What I found was very interesting. I got DICOMs of MRIs, CTs, and audiogram reports. I wrote Python scripts to calculate bone thinning and styloids and used AI to assist (say what you will about that, but when you have brain fog and are still intelligent, the mix is quite helpful).

Likewise, I became obsessed and ran separate methodologies, which all came to the same conclusions. Needless to say, this week will be a week of appointments before the Mayo to see if these findings have merit. Skipping over the likely substandard care done by some of my providers and having to demand imaging and tests that they read ultimately as normal (they appear not normal by far), the outcome this week will be quite intriguing, to say the least.

For now, until a short time later this week, my advice is always to get full reports from your care team. Not the stupid after-visit summaries that say, “You’re fine” or have hypertension, and the long list of prescriptions and supplements no one updates (I cannot do this myself; providers ignore my requests). We all know we aren’t fine, and guess what? Most providers chalk this up to LC still not being well known, or it’s just long Covid.

Final thoughts, Mayo

I’m holding back on my anger and frustration for now; I need further information. A photo of a controlled dam above is indicative of where I am at. Once I get further information, I’ll adjust accordingly to what is the most effective use of my anger (likely getting some things finally addressed).

I am set for the Mayo next week and very much so looking forward to it. I have been organizing things for the trip; hopefully I can talk to at least one provider who even knows what HRV stands for.

Long Covid Awarness Day 🎗️

Sun, 15 Mar 2026 00:00:00 +0000

I’m not really big on “days”

I haven’t really looked into it, but I’m assuming the March 15th awareness day they’re doing ties into Shakespeare. Beware the ides of March. I suppose March 2025 was when I hit the threshold for long COVID (3 months in).

Regardless, I’m not big on days. My birthday is this month. I have a friend whose birthday is today. Acknowledge them for what they are, and life goes on. And by acknowledge, I mean go out, do something meaningful and fun, and life goes on. Not the annual HBD on Facebook. Not a Lexus wrapped with a bow kind of crazy capitalistic ritual. So for long COVID awareness day, this is what I’m doing. Sorry to disappoint, no luxury car wrapped in a bow or diamond jewelry.

What has happened as far as research and awarness?

I’m in a pessimistic mood as I write this. It really doesn’t feel like much has been accomplished. There is the Scripps trial, which I’m grateful to be a part of. I remember falling off the cliff over a year ago, and I’m still advocating for myself like crazy. I see and have met others online doing the same.

Furthermore, I’ve even met people hit by the proverbial long COVID bus in real life, slowly fading and not knowing what they likely have (and yes, I mention it to them). I don’t blame them, and I tell them not to blame themselves either. It’s a system of failures; you have anxiety, take Lexapro, go to therapy, and move on while on the slow decline, all the while looking exhausted while you’re conscious. Or, maybe you’re in a wheelchair at this point.

Ultimately, I don’t know about much else going on with research besides Scripps and a few non-profit efforts. I hear rumblings from the MAHA folks, but, politics aside, this health administration has been a joke more than it ever has been in the history of the United States, and nothing will come from words claiming support and empty promises to fund research for long COVID.

Every doctor visit brings new and worsening symptoms

After taking time off work at the start of my journey, or dance, as I called it, I’m still working full-time. The return was a failed success. By this, I mean I’m failing, but it is an outward appearance of success. I’m cognitively functional. Coworkers have stopped saying, “You’re fully recovered, right?” I still wear glasses and have double vision from this. I’ll be walking with a cane later this week too. The invisible illness becomes visible this year.

In the past 3 months, I’ve been diagnosed with metabolic syndrome and the adrenal thing I last wrote about. I stopped running; causing repeated vestibular failure for the benefit of not deconditioning probably wasn’t worth it. Having to make my own medical decisions and guide care while working full-time, parenting, and also advocating for my own family’s own unique medical problems is tiring and feels impossible most days. I can tell my body is shutting down. Late last year, I made the call that I would continue to do this until I died. Multiple systems in the body showing cracks at 14 months is not a promising sign.

Pass the Mayo

I listened to Mateo and his COVID is Stoopid podcast last year; he mentioned a funny and informative post about his journey to the Mayo Clinic in Rochester, Minnesota. The guy is a creative genius, in my opinion. To listen, check it out below.

Anyway, I’ve decided to reactivate enrollment in the Long Covid program at the Mayo (assuming it’s still a thing). I already live in the state and was accepted in the previous year. That came to an abrupt pause when they said I was doing 90% of what they would do anyway.

So what changed? My duct-taped care team is and has been failing me. It’s time for more coordinated, complex care. Additionally, I think my journey is pointing me to a few possible answers that may have fixes. And dismissive specialists are a barrier and not helpful. What is helpful, however, is going back on anti-IgE injections and working with a few key specialists to keep me functional. Those include physical therapy and rehab providers, asthma and allergy (the MCAS issues), and others helping me look for answers while providing treatments to keep me somewhat going.

So to you, Mateo, I say, Pass the Mayo, please. I will let you all know how it goes.

An awarness day with more days to come

I spent the day like most weekends. But I did look at pictures from vacations when I was healthy. The header at the top was on a trip to Mexico in 2006, and yes, that is a margarita. Visualizing and remembering the senses from that day bring me back to better, healthier times. Happy Long Covid Awareness Day, friends.

I hope you have done something to make today a positive one, even if it is brief.