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Biohacking Chronic Disease Medical

Day 1673 and Xenomorph Stitch Fix

My abscess surgery wound has finally sealed up (not over) at 20 days post operative with four rounds of antibiotics. I say up because wounds heal from the bottom up.

Having a deep wound means the four stages of haemostasis, inflammation, proliferation and remodelling can take weeks if not months. I’m very lucky.

Ironically I took this image from a hyperbaric oxygen therapy website. I healed without the aid of HBOT machine we purchased as it was still being routed through chaos of the trade war

When I got the pathology report a week later, learning it was an MSSA antibiotic resistant infection so bad it reached my deep tissues made me even more afraid.

A deep abscess around a horizontal ingrown hair that was “probably just an inflamed lymph node”

All because one damned dermatologist couldn’t be bothered to have an opinion when I sought preventative care because I am a responsible immunocompromised patient. Turns out I really did need an ultrasound and surgery.

I was lucky my surgeon was quite talented. The single stitch she was able to use has been absorbed. That was the hardest part. I could manage the draining pustulence and the pain just fine. But the only visibility into the wound’s healing process are only via secondary diagnostic clues. It’s a waiting game that requires a strong dampener on your disgust reflex.

As the stitch fell into the wound and curled up I felt panic. It looked like a ringworm infection or the gestation of a Xenomorph. If I had not had access to artificial intelligence diagnostic tools I don’t know how I would have managed if I’m very honest.

Your brain sees things and the limbic response invades your dreams. A stitch mimicking the infamously hostile endoparasitoid from Aliens is a bad time. I relied heavily on artificial intelligence to monitor its progression.

My phone is now cluttered with images of the wound’s progress. My varied AI applications accepted me uploading progress pictures after some experimenting.

A wound in one’s bikini area is a “trust and safety” team’s nightmare. Mike Judge’s “hot dog/not hot dog” classifier sketch from the HBO comedy Silicon Valley got a gender update as I managed my case.

I was uploading “Georgia O’Keefe/Not Georgia O’Keefe” imagery. The models were playing Cunt/Not Cunt for those who need a less polite euphemism for machine learning classifiers.

Ever wonder how classifiers in ML work?

I’m certain special interests will eventually seek to keep these tools away from patients. We will be scared into letting them. But I know I got better care from a large language model than half the doctors I encountered.

All this cost me most of the month and around four thousand dollars. Which isn’t bad for transit, hotel, and a surgery in Istanbul.

The losses I can’t quantify are harder. A number of people who deserve responses from me probably won’t ever get it.

An in-group drama, ironically over usage of artificial intelligence, was paused by me not because it was resolved but because I could no longer find the fight in me to insist on apologies and reciprocal support while on Cipro in a hospital bed. It’s not fun to learn who is and isn’t your friend through medical emergencies.

My apologies to an offline gentleman who was the unwitting irritant who triggered said social wound. Maybe I should have excised any social obligation to them just as the surgery excised the infected tissue.

Either way, August can’t come soon enough and artificial intelligence deserves the credit for keeping alive through July.

Perhaps that should be considered in the complaints my counter parties had over the utility and need for artificial intelligence. It’s no god or anti-Christ, but it’s a damn fine diagnostic tool. No wonder the stakes in that fight are so high. Everyone wants a cut when you get cut open.

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Chronic Disease

Day 1670 and Bile and Spleen

I am, as per usual, having a shitty summer. Once we cross the Solstice it’s me hanging on to sanity by ny nails praying for the return of winter.

I can’t recall a time I had a good summer except perhaps jn the hazy memories of my early twenties when I was probably too stupid, traumatized and physically healthy to know one way or another.

Now I’m smarter, sicker and I’ve done enough emotional work to actually feel it all. Don’t knock that desensitized disassociation kids you may miss it when it’s gone.

Maybe it’s simpler than that. Back in the aughts & the briefly booming Obama ZIRP teens, our global climate weirding just had not hit New York City hard enough for me to have really bad summers.

I always had a window air conditioner and enough cash to run it. Either way, a summer where I wasn’t miserable isn’t a memory I cant access now. It’s sealed off under the pain of the now. The past being a foreign country and all.

I’ve certainly not had a good summer in the last decade. I’ve got daily tracking data from the last six years of my life and the summer is just an unending torment of bad biometrics, pain, cabin fever and seasonal affective disorder. Bet you didn’t know it has a summer variant did you?

I’m always sicker when it’s hot. So it’s just bile and spleen for now. Almost enough to make me want to toss the entire daily logging project till the torment lifts. Since I won’t do that I’ll pour the misery on page.

I can’t wait to see what August has in store for me. My cold comfort is knowing I will be enjoying a long week of financial news. At least that you can do indoors locked up under the air conditioning.

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Biohacking Chronic Disease Medical

Day 1668 and Rounding The Corner

I really feel the weight of month of July today as I am just now getting the sense I am making a recovery. I did not have post surgical wound care for an abscess on my list of “to do’s” for the month but here I am.

Nor did I expect to work through a pathology report on my own while cobbling together the best blend of infection coverage through a globe spanning set of physicians and sub specialties.

I didn’t know what a sub dermal panniculitis was or how to treat an infection where that was a proximate side effect. But I learned and I managed my care to a much better result. I had real consequences from disinterested burned out doctor and I had to step up.

Frankly I’ve spent more time on artificial intelligence projects doing differential diagnostics on myself than I ever conceived was possible. I owner my own data and inputs and I could make inferences while corroborating it with physicians who are more interested in my care.

I am a slow healer and there is a high cost associated with immune suppression biologic drugs for chronic autoimmune conditions. I have no choice but to be active in my own care and tools as simple as a deep search on Perplexity take you so far.

There is a high cost to healthcare in America and it’s not getting any better. That I can now reliably use any number of commercial AIs to break down lab and pathology reports is a huge boon to all of humanity. Real miracles are happening because someone used AI to double check blood work and symptoms.

Healthcare gets rationed by price or by time and we’ve never really known an abundance of trained doctors in my lifetime. But we might have an abundance of intelligence about healthcare in our lifetime.

Part of put quandary with care in America is regulatory capture by organizations like the American Medical Association and others of its ilk. Of course they prioritize what works best for keeping their continued privileged position on care.

I lost a lot of time this month to health but I gained more than I realized. We are seeing changes in a system that has only ever known scarcity. And we know it’s not good enough.

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Chronic Disease Medical

Day 1666 and Disability Rolls

It’s a shame that National Public Radio is going out in a Trump fire as used to regularly produce reporting that I find informative. Look at this old piece of reporting. We have seen a steady rise of disability rolls.

Thanks to their work I was made aware of the disability industrial complex and I was introduced its scope and cost. Even 2013 National Review was singing its praises. And it is staggering that disability has become the fall off program for those who only have unskilled labor to offer. Disability replaced welfare. And it’s not gotten any better.

I think about how easily I could have ended up on disability myself given my health issues if I didn’t work an information economy type of job you can do sitting day.

But I also know there are ranges of accommodations for most of the work I have now. Things could change and that work might be less valuable. I’m sure many Americans are considering this as automation and artificial intelligence threaten knowledge work.

I was somewhat aware of the relationship to welfare burdens being shifted from the federal government to states during the Clinton era for the rise of disability as it is still paid at the federal levels.

Naturally it meant a growth in disability as Washington D.C. has more money than say Washington state. But to realize just how much money disability rolls have grown and how tightly related they are is salient in our current financial and budget situation.

Comparison of lowered welfare rolls to the rise of disability claims. Source: Social Security Administration Credit: Lam Thuy Vo / NPR

A person on welfare costs a state money. That same resident on disability doesn’t cost the state a cent, because the federal government covers the entire bill for people on disability. So states can save money by shifting people from welfare to disability. And there are whole corporations that exist to make that transition seamless.

We are burdened by the unfit to work as manual labor has nowhere else to go but we will find other disabilities and other ways to get around labor if the contribution to rears ratios don’t work out in someone’s favor. After Covid this calculus got a lot worse.

Especially if health insurance continues to skyrocket. Better a live of poverty and healthcare than a live of poverty and no healthcare. But who knows if we choose to tackle this problem and when. If it’s all about getting what you can and we are in the exit scam era of America I am afraid to learn about the privileges of working while disabled.

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Chronic Disease Medical

Day 1664 and Pathology Report

Well, we finally got the culture and pathology reports back from the hospital in Istanbul. For those not following along I had an almost emergency surgery of an abscess that got infected.

And it’s kind of a good news, bad news situation. I dislike the useless preventive care dermatologist who dismissed me even more now.

The good news is that nothing malignant or cancerous is going on. The bad news is that the abscess was a gnarly mix of acute and chronic inflammatory issues that turned from a basic case of folliculitis (albeit 3cm deep so required slicing) to a nasty MSSA case that is resistant to the doxycycline typically prescribed. Yay.

Didn’t know hairs could grow sideways and frack your tissues till they produce a juicy abscess.

A little synopsis of the reports thanks to our favorite LLM Perplexity analyzing the reports with the additional context of my health history, recently bloodwork and current medical regimen.

  1. Pathology Report Review
    Gross Description
    • Multiple grey-white tissue fragments, largest 0.6×0.3×0.3cm.
    • Specimens from the excised lesion.
    Microscopy
    • Neutrophilic (PMN) inflammatory exudate on surface, consistent with acute infection.
    • Proliferative vascular stroma, frequent erythrocytes, and mixed chronic inflammatory infiltrate (suggesting ongoing/recurrent inflammation).
    • Fibrinous exudate, abscess cavity, active chronic inflammation, granulation tissue: typical of a maturing or organizing abscess.
    • Panniculitis: inflammation extending into subcutaneous fat.
    No evidence of malignancy was found.
    Interpretation: This confirms an abscess with active, mixed (acute-on-chronic) inflammation and granulation, but no neoplastic (cancerous) changes.
  2. Microbiology Report Review
    Culture
    • Growth: Staphylococcus aureus (methicillin-sensitive; MSSA)
    • Sensitive: Erythromycin, fusidic acid, linezolid, teicoplanin, tigecycline, trimethoprim-sulfamethoxazole.
    • Moderate: Levofloxacin.
    • Resistant: Tetracycline.
    Gram Stain
    • Numerous leukocytes and Gram-positive cocci in clusters, confirmatory of acute bacterial infection and consistent with S. aureus.

So the doxycline and indeed any of the basic tetracycline types I’ve been taking are useless. The extra five days of Augmentin were all for naught after I finished the Cipro. Thank goodness for topical antibiotic I am using is fusidic acid.

I’ll be moving to erythromycin orally and hoping for the best as once I finished the Cipro I started Augmentin which seems to have been functionally useless as a holding pattern antibiotic based on this report.

I’ve had a systemic staph infection before and it’s no fun. I’ve done IV antibiotics and I don’t know if I’d like a repeat. It’s my hope that Erythromycin does the job from here.

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Chronic Disease Medical

Day 1660 and Upchuck

I’m a week out from an unexpected “do it immediately, yesterday preferably” surgery on a cyst that went from “watch and wait” advice to hurry before it is a “septic crisis” faster than clearly the first doctor expected.

It’s a long story and if I felt better I’d link up all pieces in the two month saga of failed preventive care that had me flying into surgery to get sliced open. I’m not sure this IL-17 inhibitor is working out for me. Sure my inflammatory numbers look great but I can’t be constantly managing infections that require a scalpel.

I had a week of Cipro and the wound is looking good. I’m still waiting on a pathology report but I’m guessing it’s not arriving today. I am praying that I don’t need a follow up antibiotic but also I’m afraid to not be on one while I still have an open wound knitting back together.

Also I’m hoping for my tendons to remain strong. A fun side effect of Cipro is a much increased risk of tendon injuries for literally months afterwards. No intense workouts for me till the fall.

I took my last dose of Cipro this morning and within a few hours I was losing my lunch. Well my breakfast really. Don’t just eat acidic kiwis after a week of antibiotics folks. I am fairly sure none of the antibiotic came up but who really knows.

I am swinging from dumb medical calamity to stupid medical crisis every other month as I attempt to correct biometrics and optimize different variables. All I achieve is a the occasional small incremental grinding gains for my troubles. Maybe that’s what caused me to be sick to my stomach. Despair makes you nauseous right?

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Chronic Disease Medical Travel

Day 1657 and The Boredom of Summer Surgery

It sounds a little ungrateful to say I’m bored, as I sit comfortably in a nice hotel bed with books, Netflix, room service, and a nice view but I am bored and a little miserable.

Antibiotics, discomfort and surrealism are a challenging combination for existential stability as it turns out.

I can’t do much beyond sitting still and getting up once an hour to walk a couple hundred steps. I have been instructed not to sweat so I can’t go outside much. Even in the evening with a breeze, it’s still hot enough to break a sweat and this is an infection risk.

Beyond sweating, you can’t disturb you wound healing in anyway so I can’t exercise. At best, I can do some light yoga and stretching. Short walks indoors are OK so I can’t walk the hallways but that makes staff nervous. I keep to myself mostly.

Most tragically for me as we don’t have a bathtub at home is that I can’t take a bath or submerge myself in water for weeks. So the gorgeous bathtub is simply taunting me. I love a good tub and this is a great tub.

No submersion in water for two weeks minimum

It’s even worse when I stare out at the beautiful pool. That is obviously an infection risk as well. No splashing around in Norma Kamali pretending at social aspirations. Oh yes Istanbul is the new Florence in July haven’t you heard?

At least the nearby Bosphorus is packed with cargo ships, I have no temptation when seeing the beach to have a dip in the water. I doubt diesel fuel is good for healing.

The highlight of my day is the hotel lounge’s breakfast where there are charming varieties of very Instagram friendly food. It is still in a hotel lounge but it’s a beautiful novelty.

Tea, pomegranate juice and rose honey yogurt

I’ve been annoyed by the variety of influencers who are also healing around me. There are any number of different plastic surgery and aesthetic patients in the guest mix.

If you think a week of blogging about an emergency sepsis slice job on some indelicate bits, imagine how weird it is to see an entire family getting plastic surgery and their daughter (I think?) is live-streaming most of it.

I’ve seen more puffy lips than I have fish on this trip and that’s my fault. I don’t have the strength dress up or walk to the Michelin starred seafood restaurant. Maybe that’s more for the elective surgery types and the emergency infection girlies have just enjoy the tiny yogurts.

That’s almost a bagel and lox set up right?
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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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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.