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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.

Categories
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.

Categories
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.

Categories
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.

Categories
Medical

Day 1661 and Please Let This Be Over Soon

I am hanging onto my sanity by a thread as I round the corner of a surgery I did not expect. Well, I’m eight days out from it, so slightly more than a week.

I’m hoping I start to feel gets better soon. It’s my first day without antibiotics and I am already certain I shouldn’t be off them. As horrific as the side effects of Cipro may be, my immune suppression on Bimzelx is leaving me shockingly open to skin infections.

I’m terrified of MRSA at this point. I was taking doxycycline for another skin infection when the cyst went around the bend to “septic fears” on me so I’m a bit twitchy about the entire situation.

The prior IL-17 seemed to strike a fine balance on suppression and capacity to fight off infections. Now my biometrics are better but I’m constantly fighting off chaos with the meiborn gland nonsense and now buried cysts from sideways hairs fracking my dermis.

Maybe I’ll turn a corner and have some better writing ahead of me soon. Until that happens please forgive my poor blogging and missed emails. At this point the singularity could arrive and I’d miss it like a character in Left Behind. I’ll probably miss the rapture at this rate.

Categories
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?

Categories
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?
Categories
Biohacking Medical Travel

Day 1656 and Recovery from Recovery

I’m waiting on pathology lab work but I’m mostly supposed to be resting and healing after surgery on Friday. I feel like crap and I’m scared.

I have no real basis for making judgements on how well I am healing as you can’t just upload imagines of your genitalia adjacent wounds to Claude or Perplexirty. Even Grok is like “no”when you trip the icky lady bits warning sensor coding.

Thankfully it being a Monday I was able to get a short appointment at the hospital with the improbably beautiful and well dressed obstetrician who did my surgery. She seems to think I’m fine and healing normally.

I trust a woman who dresses well. But the antibiotics are just making a hash of my mind, my intestines and my stomach.

Bloodletting? Lost in translation

I’m enjoying the headstart of waking up 9 hours ahead of home and 7 hours ahead of the New York market opening. Now if only I felt smart enough to actually work.

The Cipro is just the absolute worst. I feel guilty complaining as I have such excellent care and a comfortable hotel room in which to recover. But I’m struggling. All the back work and emails will just have to wait I suppose.

I feel like a recovering from my recovery might soon be necessary as my mind-body-gut axis is toppling ass over tits as the nuclear winter of 3 separate antibiotics lays waste to once fertile lands for friendly gut biomes. And this is before I’ve even considered whether I have the right drugs. Pathology reports might suggest fungals.

Categories
Medical Travel

Day 1655 and Healing Waters

I am now forty eight hours post operative and I feel like shit. I was warned but I am not enjoying how the very intense antibiotics make my brain feel.

The first five to ten hours after surgery when the local anesthetic hasn’t fully worn off and your adrenaline is still pumping are the easiest. I was smiling and happy to walk myself to the hotel and I was snapping pictures of the Turkish Cipro in amusement. How cool was all of this?

It didn’t stay cool. The first 24 hours are weird as you are still gooy and gushy so it’s tons of clean up and hand done hygiene. You aren’t allowed to shower yet, so it’s just a liminal state of grossness as you wait for swelling to abate and antibiotics to work.

Well, I’ve passed hour forty eight and I’m brain dead. I can’t think straight. The work I was excited to do in bed as I stared out over the Bosphorus was probably a fantasy.

I’m tired. I’m swollen in very tender areas. The idea of showering is simultaneously appealing and too exhausting to even contemplate. I am staring at the lovely bathtub I can’t use. Suddenly all the sources of water submersion are a threat instead of a joy.

We don’t have a bathtub at home so I only get to relax and soak a tub when a hotel and here is a beautiful one that I cannot use

Despite my exhaustion it’s very hard to sleep well in this situation. I need to keep pressure off the wound so it’s all about pillows and angles. I stayed up playing on Twitter where someone asked how a bottle of water for skincare could possibly sell at such a high price.

Right about now as I contemplate my banishment from the pool, the beach and the bathtub I think about how much I’d enjoy the healing waters of a mineral hydrotherapy spa.

Categories
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.