Tag: Doctors

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Biohacking Chronic Disease Emotional Work

Day 1708 and Calendaring Pareto Optimal Care on a Worsening Trajectory of Biometrics

I like to manage my days with buffers around my routines and obligations. I find tight schedules to be tiring and unhelpful as I manage my energy, pain, and workload. A packed calendar raises my cortisol.

I believe I am easily stressed by shouldering too much, but I also fear I am on a downward health trajectory which will require more time, energy and effort. I am beginning to contemplate reworking my style of effort management as conditions on the ground change. Can I schedule my way out of a spiral down? What is my Pareto optimal plan here?

My 2025 has been significantly worse than my 2024 and an almost entirely different realm of issues than I faced prior to that. As I compare, 2022 and 2023 were entirely different worlds than my 2025. I thought I was pretty sick then but improving my inflammatory markers has nuked my HRV & stamina.

I’m back to the bleak bottom quartile biometrics I had when I was first diagnosed with my complex chronic inflammatory diseases case.

I fear I never recovered from my two Covid cases including the one which eventually turned into a brutal pneumonia.

The stress of a permanently lowered baseline of biometrics makes me feel despair even as I have new tools at my disposal to mitigate them.

Will my whole life be dedicated to the care and feeding of my broken body? Is that something I can live for instead of simply living with?

I just don’t know how much effort will be put into managing this new baseline and what the effort to reward ratio looks.

Is there a Pareto principle I can apply to permanent disability which I can, and maybe even should, emotionally accept? Or do I soldier on hoping that my middle aged body may repair itself if I do absolutely everything right? And what am I doing all of that for?

It just seems as if no matter the time management, advanced medical care, constant research and daily effort I only get worse. I’ve been under a scalpel three times this year.

Each time I think I have found a new drug or treatment modality I am quickly slapped with second order side effects. And then those side effects have new side effects as I treat them.

It’s the pimp my ride recursion of biohacking, but instead of liking a thing and adding it to my car, I’m adding more and more mitigation measures to manage the results of the biohacking.

Pimp my biohacking

Now I have a new load of emotional stress and grief weighing on me as father died this weekend. I don’t even know what that process will look like, especially given the challenging modern family situation I have.

Any positive aspects of my year (passing the right to compute bill into law, progress in my startup portfolio) seems pale in contrast to emergency surgery, slow burdensome recovery and the arrival of mortality. I’m only at the halfway point of life (and a little bit past that for the year) and I feel done in completely.

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Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
Categories
Biohacking Chronic Disease Medical

Day 1649 and Physician Heal Thyself

I’ve been having some side effects from my new biologic injection Bimzelx. Whenever I travel, I do a spate of doctors appointments before I leave so I can be adequately prepared for likely scenarios. Be prepared is my motto.

I had gone to a dermatologist a month ago to check on a cyst or swollen lymph node in an awkward spot. It’s on my pubic bikini area so I’ve been playing hot potato with dermatologists versus gynecologists.

The dermatologist appointment was so horrifying I’d recommend you stay away from Dr. Tara Oetken at SkincareMT as it was such a degrading and frankly useless experience. I do fully endorse their cosmetic practice and Nurse Addison.

I ended up at the dermatologist as the gynos were like “uhhh it’s on the outside and involves no reproductive organs so you need a dermatologist” and then dermatologist was a bit “its close to your vagina ewwww icky scary did you go to the gyno?”

Yes dear that’s how I got sent to you, this ain’t no picnic for me either.

I was embarrassed but the cyst/enflamed lymph node had been unchanging for a few months (not growing or differing in texture but malleable & squishy). So I checked in, was mostly embarrassed, got no direction that helped and left feeling degraded.

Given my previous issues with meiborn gland infections on my eyelids, I’d been instructed to keep a close eye any side effects common like folliculitis that is common Bimzelx. This was clearly a complex side effect that I’d had multiple issues with all year. The next step was imaging but I could get zero sense in the very short visit of whether or not the doctor felt it was warranted. “It’s up to you” sounds nice until you want a doctor to give you their professional advice.

Well now I’m in a foreign country and the almond sized squishy bit has ballooned in just four or five short days to thrice or quadruple its size, it’s now quite firm and not easy to move around or squish and I’ve got to do the same dance all over with doctors ago don’t speak English.

Thankfully I have artificial intelligence and an interpreter. I’ll get the imaging ultrasound done (AI says get it done immediately based on the differential it did) and then we can see if it’s a cyst or a lymph node that needs an I&D. I started antibiotics 3 days into this ballooning and it has done little to fix it so let’s find out. Hopefully I don’t need someone lancing and squeezing out stuff in a foreign country. But if I do need that I may pop a flight to Istanbul for that.