Personal on A long dance with Rona

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):

View this post on Instagram

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.

The loss of color 🎨

Wed, 25 Feb 2026 00:00:00 +0000

What the hell is ADD?

It’s typically referred to as ADHD these days. I’ve gone through months of treating it with non-stimulants after LC and landed on a stimulant (more on this another time; it may not have been the best choice long-term for me). But that’s not what this is about. This is about the earlier months of long covid, when things were royally messed up with my brain.

I have started several posts because I have many ideas. Do I finish them in a timely manner, or at all sometimes? No. If someone has any idea on how to remedy this, I’d love to hear it!

The emotional loss of color

In the early months of long covid, my brain had changed. My mind had been altered drastically, yet I had no idea what was causing it. This in and of itself triggered massive anxiety. I would go to the ER and get sent home, being told I’m stable and don’t belong there. At one point I was told to go home, rest, and find a “long covid clinic, or something.”

On the spiral downward, it was strange. I had blips of myself that would come on randomly. I would tell myself that the gray, detached feelings were temporary. And then they just kept becoming more frequent until the color was gone. Day after day, I would wake up mid-to-late morning after hardly sleeping (its own unique hell). I could barely drive (shouldn’t have been for a period there). There was no joy or excitement. My sense of humor was gone.

Music, once a staple of my life, became extremely foreign. Love, jealousy, regret, mistakes, and passion had no meaning. The only emotion I felt was anger, and I was angry a lot. Angry at doctors and medical providers (this was, albeit, valid at times), family, friends, and, mostly, myself. This was all my fault. I was a massive failure. I couldn’t drive, parent, work, or be a husband. Likewise, I hated my life in this body, and I still do at times.

In a world of human wreckage

Music became a big part of recovery, and I’m still recovering. I started to write down songs that had meaning to me, those that I identified with during this void of self. I no longer need to use a notebook; I hear a song, and I’m reminded of the depth of hell I was in (alas, occasionally still am).

Furthermore, I started to realize that joy was working its way into the mix. Lost emotions were coming back, and not just the negative ones. If you have the energy and interest, see if you can find the emotions in the playlist below. Or, make your own. I appreciate listening to it periodically, when I’m feeling bad. I was in such a low place the first 6 months of long covid. It’s easy to forget that, but, to me, forgetting it would probably make my emotional state worse again.

Acceptance of these changes is nearly impossible

I hate how angry I got and sometimes how angry I still get. I don’t want to accept this.

Acceptance is a difficult thing. It is not admitting defeat, yet I cannot get that through my foggy head. Waves of failure still hit me hard. I can’t do what I could do before, and that needs to be okay, I know, but I haven’t really mastered this.

However, I am able to rationalize what I can do as a very positive element. I can still exercise. Walk. Run. Mostly talk okay without stuttering. I typically remember things better with aids and overall improvement from the early onset months. I can drive for now.

I miss my sense of humor from before; laughter is such a healer. I miss some friends I’ve lost. Yet, I still have a sense of humor at times, and it still continues to get better, 14 months in.

I’ve made many new friends during this. I can’t expect some of the ones I’ve lost to just come back, just as much as I cannot force myself to be the friend that I was before to someone who wants me to.

It’s okay to be angry. It’s how you let it out. Go to a smash room. Park your car and yell. Hit a punching bag. Stuck at home? Yell into a pillow. If you’re in therapy, use that safe place to let it out (assuming your therapist is okay with it, of course). I didn’t know what to do with anger at first, but now I mostly do (no one is perfect). The lack of control of a damaged body and mind is incredibly difficult and can be infuriating.

I want to say, with anger, it is an extension of sadness. I’m a guy born in the 80s. Males we looked up to constantly told us never to cry; it is a sign of weakness. I have never cried so much in my life before this (and I’ve not always had a great life for other reasons). It feels good and is okay, no matter what your gender is. Letting emotions out in a healthy manner is what our minds need.

Do you wanna leave, or something?

So, I look over this once in a while. I see the errors and mistakes I make, and I try to keep up on correcting them. The lack of focus too. My vision is still pretty screwy, and my nervous system is all over the place. Sometimes I want to give up on this blog, but it is a way for me to work on sharing my experience (secondary). More importantly, it allows me to keep track of where I was, where I am now, and where I would like to go with all of this.

I’m grateful that people read this, and I hope others can find their way forward to better days, regardless of how helpful or unhelpful this blog is for you.

You may find my long covid playlist here: Long COVID Playlist on YouTube Music

A year later, here we go 🫁

Thu, 20 Nov 2025 00:00:00 +0000

Our meeting 👋

In a few short days, I’ll be one year in with long Covid. I started working on this blog in May of 2025 - yes, it’s November 2025 now. I have finally gotten things like worsened ADHD and brain fog somewhat managed these days. Let’s rewind to the beginning with this first post.

One of my greatest challenges has been worsened ADHD from this. Oh hey, I could use Hugo to make a blog, and it will be super easy if I pace myself and take my time. It is, but enter the state of brain fog and poor attention. I want to put up a featured image. Oh look, it’s not working for days because every inch of energy used is spent overthinking how this platform works and overcomplicating every darn thing.

Nothing here will be perfect (deep breaths), and there is more to come here, but I needed to get this started, so here we go!

The Courtship 💃

On November 28, 2024, I was enjoying Thanksgiving here in the US with friends and family. It was the second year back at this, as COVID had disrupted in-person gatherings for a few years. The group is COVID conscious, and no one was showing any symptoms. I didn’t see Rona, but a presence was felt. As the night went on, I started feeling more tired than usual. Caulked it up to playing outside with the kids before dinner. I drove my family home - I remember that drive for some reason in vivid detail. The streetlights seemed brighter than normal, and the dusting of light snowfall was bothering me a little bit more than it did before. Nothing I couldn’t handle, though.

At home, I felt pretty wiped out. Kids to bed, and I went to bed soon that night. I awoke the next morning feeling like garbage. My first thought was, this is COVID. I need to test. It was positive and would be my third known infection of COVID. I started Paxlovid, as I have asthma, like I did the first two times.

The Rebound 🪃

December 7, 2024: After six days of working here and there, resting, and taking it easy, I felt almost 100%. Sleep wasn’t great; I was waking up early but falling asleep fine late in the week. I took an at-home test, and it was negative (clear it was a single line). This seemed to track; I felt good, and like before, this was about the course of having COVID for me.

I had energy and played football outside on Sunday. Sunday night I felt odd, sore, and fatigued. Chalked it up to intense physical activity during football. I was able to get to sleep and deal with the pain with a dose of NyQuil Flu. The next morning, I awoke feeling awful, like I had COVID again. So, I took the lollipop at-home test (pictured), and to my confusion, it was positive again. I took another one, different brand, same result. I went to urgent care a few days later for a nasal swab test, and that was positive.

Component results

Component	Your value	Standard range	Result Date	Result Time
COVID-19 INTERPRETATION	Detected	Not Detected	12/10/2024	4:01 AM
SARS COV-2 SOURCE	Nasopharyngeal swab

Narrative
Test performed by Transcription Mediated Amplification. TMA has been shown to be equivalent to commercial real-time PCR tests. This test has been authorized by the FDA under Emergency Use Authorization (EUA) for use by authorized laboratories.

And so it begins

I followed up with Urgent Care again, as my kids ended up having strep concurrently with this (I did not test positive for that). Urgent Care had nothing to offer me about rebound infections but a 5-day course of prednisone, which I accepted. I was told not to do Paxlovid again. However, I did go down that rabbit hole of did Paxlovid cause a rebound potentially? The answer appears to be likely not (What Is Paxlovid Rebound? 9 Things to Know).

What follows next is a hell of neurological symptoms from COVID along with coronasomnia, short-term disability off work, and a low quality of life I have never experienced before in my life. I will have the symptoms page up soon.