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.

Self-Advocacy on A long dance with Rona