Category: Medical

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Chronic Disease Medical Travel

Day 1654 and Post-Operative Exhaustion

As I slowly walked myself out of surgery yesterday, I thought to myself “I actually feel much better!” And I genuinely did.

If you have a gentle stomach, maybe stop reading here. I’m fine. I’m on my way to well. And this will be graphic.

I do feel dramatically better having had the “slouching towards septic” abscess drained of infection as well as removal of the initial pearl style irritant (a 3mm deep entirely horizontal hair growing not up but sideways like an underground fracking tube).

I appreciated having the walls of the abscess pulled out bit by bit in a delicate curettage by my silk sundress clad physician. It was all a success.

But post operative care is hard? I’m a mess. I’m exhausted, loopy, and the hotel’s guest services are concerned enough that they are doing me such kindnesses like sending up tea and maxipads. Turkish hospitality comes from a place of genuine kindness and I need that right now.

It’s been a long journey of stupid to end up in Istanbul to get a smart fix. Going from a squishy movable almond sized lump without any pain six weeks ago to a hard plum sized lump was disconcerting enough. Especially having done my damned preventive care visits with the useless Dr Oetkin in Montana.

Have had two days of prodding, poking, squeezing, moving and ultrasounding done in the Mediterranean, I was swollen, feverish, and all hurt to the touch. I was afraid.

How did I get here? How had my next generation IL-17 managed to cause me so many negative side effects even as I was doing better across all biometrics and across quality of life metrics?

No wonder the doctor in Istanbul was so concerned. All the previous doctors had done was make my situation worse though inaction and delay m, and then the action they took made it worse.

Now I have recovery ahead of me. Last night as I went to pee, I realized why they had padded the upper areas of my underwear with maxi pads. I’ve got no discharge downstairs but on the upper bikini area there was no such luck.

I only needed one stitch to close up thanks to the careful work of the doctor, but a lot of goo came out during the surgery drainage and I was warned there was still more to come, though it would taper off.

I gently washed the area with a cloth and antiseptic soap before application of antibiotic cream (my third type of antibiotic). I gasped as I saw the first lightly red sticky watery fluid gush out rapidly around the stitch. It was so fast and there was so damn much. Bodies are disgusting what else can be said?

I mopped up with a clean moist towel and applied a thick layer of antibiotic cream, but I had learned the deflation of the abscess wasn’t quite done. The swelling, I was told, would take a week or more to full abate.

I’ll be sleeping this off for the day but if you are in Montana with an autoimmune disease and need a dermatologist I’d recommend you stay away from Dr. Tara Oetken at SkincareMT. Without her hasty heuristics and lack of conviction I wouldn’t be in this mess.

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Medical Travel

Day 1653 and Slicing Then Cipro

Well it’s been exciting day for me and I may be a little bit high (alas not the fun or good kind) as I just had an abscess surgery in Istanbul.

I’m waiting on the lab work for the culture and pathology but from what I saw come out of the abscess it can’t be anything good as the doctor prescribed multiple antibiotics including Cipro while we wait for results.

Bimzelx has some gnarly side effects and I don’t know how much more slicing up infections I can manage for an immune suppressant biologic. My biometrics are better but 2 eye infections and one abscess surgery that almost went septic isn’t making me feel great about the balance of value on the drug.

I can’t say enough nice things about the Turkish medical system and their treatment of foreign “tourist” patients. It’s my second time this year having my Bimzelx side effects treated here.

A lovely interpreter and patient advocate was with me the entire time. The physician was so empathic. She was astonishingly effective in technique and her whole being moved with an efficient alacrity that was admirable given she was in a floral print silk sundress, high heels and pearls.

Imagine being so good at your job you can squeeze infected goo out of another human that you do it in white silk? I was impressed.

She on the other hand was not impressed by the care I received in America.

“They knew you were immunocompromised and did not insist on an ultrasound and immediate treatment?

What do you mean they said wait and see?”

“I don’t believe the other doctor thought it was a swollen lymph node given the clear folliculitis literature warnings for your biological drug.”

I was headed straight to sepsis and in her mind having multiple doctors leave a high risk patient to “put a compress on it and wait and see” when it was easily 3mm below the skin was malpractice to her.

Quite the big abscess eh? And look at that irritating side ways hair in there so deeply buried

And indeed I am on the kinds of antibiotics you’d expect someone close to septic shock might be on. I am amazed to be doing as well as I am. But I am frankly furious.

I tried to be responsible with preventative care and was ignored. I just kept on going until the small lump became a large lump. Then it rapidly became so swollen and infected it couldn’t be ignored. What a metaphor for the American healthcare share. You try to be responsible and are shown the door till it’s a crisis. And then they can’t even fix the crisis.

On the bright side I’m in a lovely hotel next to the hospital receiving excellent care. I could afford to fly in and get it taken care of without any worries (for the curious this was $2,000 for surgery and follow up care). I was in a very space age room after being in surgery and all my intense antibiotics were hand delivered to me. Now we wait to see what the labs say.

A private recovery suite
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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.
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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.

Categories
Medical Startups

Day 1630 and Change Change Change

I was hit hard by a week of poor health which meant I missed a policy gathering in Helena today which I was really excited to attend. One of the topics was autonomy and choice in medical care and health.

And with any unexpected change of plans I try to see the upside. Because I was bed resting I was able to catch up on a keynote speech by engineer and technical communicating savant Andrei Karpathy’s talk to YC’s Startup School.

He is an excellent public speaker and has a rare gift for clarity which benefits the entire software ecosystem. And we are an industry who disproportionately see the value of sharing in real time the changes we are seeing as we build. This generation built the networks and seeded the data with our content that enabled these models.

I saw in the talk the long lineage of technical cycles, access expansion and autonomy expanding that I have been a part of since my childhood. I’ve seen a few development and deployment cycles to use the theories of Carlotta Perez

Each cycle granted more power to sharing. The excess value generation of making our tools open to more external use has proven itself. And that has generally made for cycles of innovation that are shared mid deployment by the people as it happens.

And yet we still struggle with the right way of interacting with the tools. Math is fairly abstract. Your average human doesn’t much care for conditionals. We developed mathematics over such odd timeframes that it’s somehow easier to think it’s not in tandem with a culture and a commercial environment.

Maybe some only look at the industrial or military applications for tools and they care little about how they were made. The level of autonomy and control and abstraction that is enabled by software baffles. The more accessible something becomes the more we need to think of the user of the tool. Specialists can use special tooling and need not be so accessible. When it becomes a tool for masses things change. And we are in a changing moment for software as a tool just as the world has the highest expectations for them. Because we are perhaps at the edge of the great buildout.

Karpathy said that working with LLMs can feel like using the command line. It’s an intuitive framing for many programmers. He believes we have not yet found the graphical user interface for this era even as we are perhaps building new operating systems.

A screenshot from Karpathy’s YC Startup School 2025 talk

The GUI or graphical user interface was a mind blowing shift for the personal computing revolution. It allowed in a world of new users including you to use the benefits of computing. Which wasn’t just calculating missile trajectory. The commercial possibilities were as endless as the personal and aesthetic.

That change in access built enormous businesses and was the stuff of nasty backstabbing in the commercialization processes and the competition was very sharp in personal computing era. My father sold software through an old school reseller called Ingram and I gather it was a pretty wild time in the eighties.

But the fresh paradigm is always beyond reach. It’s there waiting to upend your entire world.

To quote Neal Stephenson “ in the beginning there was the command” essay

We were all off the Batch, and on the Command Line, interface now—my very first shift in operating system paradigms, if only I’d known it.

We are in an operating system shift now and we don’t know what to think about it it’s structure. It’s modeled on humans so it has all the same problems we have. It has cognitive deficits just as humans do. This annoys normies who don’t understand how it’s built.

We are interfacing with a new kind of compute output and it will slowly change everything around it as the abstraction layers bring more people into the effort.

We don’t really know what it looks like at this order of magnitude but the change is here and we get to make it. It frankly seems exhausting to ponder and a much much much harder problem set for power than generalized intelligence.

How does this relate to medicine and autonomy? Well, it’s become clear that medicine will be one of the areas that benefits from new access.

I care about the way we develop tools for the entire stack of medicine from pharmaceuticals to patient data. I don’t want another era of regulatory capture. The way we build applications affects how much autonomy and freedom we can give both doctors and patients. I know don’t want to be stuck with what we’ve got. More people should benefit from the changes ahead.

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Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

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Biohacking Chronic Disease Medical

Day 1619 and What A Headache

It’s a gorgeous breeze June Sunday in Montana. It’s the sort of day where you go to your favorite bakery for an exotic little pastry, maybe get lunch from a favorite restaurant and then go for a hike or a bike ride to marvel at the majesty in wonder.

As I am working through a new physio routine to improve compensatory pain in my trapezius muscles I was a little nervous. I wanted to adequately test that I’d found new corrective instincts without overdoing things.

I walked a favorite two mile circuit with a stead inclined of hills that eases back out into the flat valley. I felt terrific. The sun was shining but the breeze kept it cool. Truly paradise on earth.

And then within an hour or so I got an awful headache. Had I failed at reworking my compensation so badly? I checked fascia and muscle points and found my shoulders relaxed.

Then I checked my upper cervical spike and yelped. I had swapped one compensation for another and gave myself a killer headache in the process. But I didn’t have the same pain pattern or headache type and that is a win.

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Biohacking Medical

Day 1617 and Trap Queen

I am struggling with some biomechanical issues in my upper body that are intersecting poorly with the inflammation of my ankylosing spondylitis and psoriatic arthritis.

The upper fibers of my trapezius muscles are killing me. I presume I have some soreness and pain as I’ve been incorporating a new slow progressive full body workout program. But a little digging is making me reassess that conclusion.

Via Physio-Pedia

I’ve been patiently working the problem of my inflammatory issues for literally half a decade and yet I am regularly finding new information thanks to the wonders of deep research products.

Somehow I had never really researched enthesitis despite it being a fairly core symptom in my case presentation of spondyloarthropathies.

It is an inflammation where tendons and ligaments attach to the bone and I have it something fierce in my intercostals and trapezius muscles.

There are many other areas where enthesitis can occur, he says, including the area where the ribs meet the breastbone, the back of the head where it meets the neck, and in the spine in the area closest to the skin. Creaky Joints

It’s possible current pain not delayed onset muscle soreness at all. It’s enthesitis. I don’t know if my new IL-17 inhibitor is working as it should but the strain of my new workout regimen is just a part of a wider issue in my condition. I’ve got a deep dive running on exercises but right now I’m going to take a muscle relaxer (magnesium) and lay down.

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Medical

Day 1615 and Ounce of Prevention

I had a preventative care appointment at the doctor today and I came away from the experience wondering why I bothered.

I felt like a fool for checking on something before it had become a problem. It was merely a concern and no answers could be found without a substantial escalation in investment and time. Which I chose not to dod.

I will still get a bill whether it’s 90 seconds or 90 minutes which I do understand. But does it have to be so “escalate to maximum” or “just ignore it” as the poles of preventative care? Can’t it be more of a spectrum of options? And because “fuck you that’s why” I have no more certainty on the problem than when I started.

And that’s not how I want to experience the care and maintenance of anything under my care in my life let alone my body. Our house, our relationships, our business, our car, heck our chickens deserve better than “don’t know why you bother” care. I bother because I care.

We have a home maintenance sheet excel, a seasonal rotation system for disaster supplies, and an inventory management system for key household goods.

Yeah, we are that kind of family. My husband has opinions on label makers. I have strong opinions on sweater brushes and leather are.

An ounce of prevention is worth a pound of cure.

Sure that’s a very Mary Poppins kind of approach to life but I think it’s a worthy one. I want to live a life where I am responsible to my own life.

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Biohacking Medical Travel

Day 1567 and Turkish Health Tourism

I had not planned it this way but I had a repeat of the meiborn gland issue that got me sent to hospital in February. I had, in just four short days, a chalazion turn into hordeolum aka an infected cyst.

It’s probably a side effect of the IL-17 biological I am using. I had a mold exposure over the winter in our bed room so who knows. Sucks to be me. This is why I’m excited about new technology for healing like HBOT.

It needed a doctor to perform an incision and curettage. I asked the concierge at my hotel for a clinic and I walked five minutes to an enormous glittering skyscraper of a hospital. Many of those hospitals are run twenty four hours a day.

I walk in with no appointment. They immediately find me a medical translator. I’m checked in within fifteen minutes. I get a full eye exam and a seen by a doctor who instantly diagnoses it.

Next thing I know I’m in the chair with a local anesthetic and she is slicing, draining and disinfecting. She gets me my post treatment protocol. A pharmacy delivers the prescriptions in 9 minutes. Now this is healthcare.

Within the space of an hour I’m fixed up and sent home to eat. I’m sitting down to grilled octopus and prawns by the Bosporus in no time. I needed a protein filled lunch to take my antibiotics.