Categories
Emotional Work

Day 1704 and At A Loss

Some days are harder to write through than others. Yesterday I found out my father had passed. I didn’t say anything as I wasn’t sure what would happen next.

I didn’t know who else knew or if others were being alerted so I didn’t discuss it. The last thing I wanted was to disclose something inadvertently as the rest of the family found out. I loved my father very much. We had a complicated family but I didn’t doubt that love.

I learned of his passing as my brother received a voice message in the middle of the night from my father’s wife. He called me immediately when he woke up and had listened to it.

There wasn’t much information in the voicemail but there is a certain logic to the phone tree of death when a family member passes. My brother called his mother after he called me. I called my mother. That was the end of our tree.

I did not get a phone call or other information but my brother has and it is likely I will remain at a loss for words as to how to consider my feelings about all of this. I can speak about it as I know that the parties concerned all know but what to say is beyond me.

The complexity of the social contract and our expectations of family ties has been ongoing for several generations now. Divorce and remarriage have been common in my living memory and the blending of families the norm. Sometimes it’s beautiful. Sometimes it’s not.

Categories
Medical

Day 1697 and Gut Brain Axis Misery Meets Peptide Season

It would seem I found an antibiotic that disagrees with me. As the tail end of my soft tissue recovery from my abscess surgery and deep tissue infection appears in sight I had a setback with an additional antibiotic.

Cephalexin was one of the top choices on the pathology report from the hospital and recommended as a first line treatment by the surgeon, several artificial intelligence differential diagnostic secondary checks and my primary care doctor.

They did not prescribe it first and I found out why yesterday when I felt as if I’d hurt a shoulder ligament doing, of all things, tai chi. I was despondent over it (ironically another side effect). The gut-brain axis gets weird when you kill off bad microflora.

So yeah not the antibiotic for me. As it turns out we recently learned it’s associated with tendon rupture. Not quite as bad as the other more infamous Cipro. Which ironically I was on with no issues. But Cephalexin has got some risks to tendons and ligaments too.

Being on an immune suppressant (an IL-17 called Bimzelx) for ankylosing spondylitis and psoriatic arthritis has improved a number of biomarkers but also made me susceptible to skin infections. Like the kind that require slicing. Not fun.

Now in the wake of the deep tissue infection, we had a systemic MSSA problem. It was entirely rational to nuke that thing from orbit. Any resurgence needs maximum force to prevent chances for regrowth. You simply have to to be very watchful for side effects in all things now.

I feel like I’m in some awful healthcare version of pimp my ride. Pimp my diagnosis?

So I heard you had side effects so I gave you a side effect for that side effect.“

And so I’ve been sent down the peptide rabbit hole to see if that might help with tissue healing. My shoulder is probably fine as I stopped quite quickly but a reminder that I need to be watchful of what I’m taking and experiment carefully.

Naturally I’m already considering my risk profile carefully but as it’s peptide season in Silicon Valley (who isn’t on at least a micro dose of a next generation GLP-1 agonist or some new fangled GIP.

Why not add some more to the mix? Strong tissues and lean mass being protective against many a problem. Behold a little Grok breakdown of what I was recommended.

GHK-Cu (Copper Peptide)

GHK-Cu is a naturally occurring tripeptide (glycyl-L-histidyl-L-lysine) that binds to copper ions, forming a complex that plays a role in tissue repair and regeneration. Its mechanism in tendon healing involves several key processes:

  • Collagen and Extracellular Matrix Synthesis: GHK-Cu directly acts on fibroblasts (cells responsible for producing connective tissue) by increasing the production of mRNA and proteins for collagen (types I and III), elastin, proteoglycans, glycosaminoglycans, and decorin. This enhances the structural integrity of tendons during repair. Sources Sources
  • Angiogenesis and Nerve Outgrowth: It stimulates the growth of blood vessels (angiogenesis) and nerves, improving nutrient delivery and innervation to the healing site, which accelerates wound contraction and tissue remodeling. Sources
  • Anti-Inflammatory and Antioxidant Effects: GHK-Cu blocks the release of tissue-damaging free iron from ferritin channels, reducing oxidative stress and lipid peroxidation after injury. It also modulates inflammation to create a favorable environment for healing. Sources Sources
  • Systemic Effects: When administered, it can enhance healing systemically, even if injected away from the injury site, by regulating copper-dependent enzymes involved in cell growth and repair.

Research, primarily from animal models and in vitro studies, suggests these actions lead to faster tendon recovery, but human clinical trials are limited, and it’s not FDA-approved for therapeutic use.

TB-500 (Thymosin Beta-4 Fragment)

TB-500 is a synthetic peptide derived from thymosin beta-4, a protein involved in actin regulation. It primarily aids tendon healing by promoting cellular mobility and regeneration:

  • Actin Upregulation and Cell Migration: TB-500 binds to actin, a key protein in cell structure, enhancing cell migration (chemotaxis) and proliferation. This allows fibroblasts and other repair cells to quickly move to the injury site, accelerating tissue repair. Sources
  • Angiogenesis: It stimulates the formation of new blood vessels, improving blood flow and oxygen delivery to damaged tendons, which supports faster healing.
  • Anti-Inflammatory and Antifibrotic Properties: TB-500 modulates inflammation by reducing pro-inflammatory cytokines and preventing excessive fibrosis (scar tissue formation), creating a balanced healing environment.
  • Tissue Regeneration: In animal studies, it promotes overall wound healing and tissue regeneration, though evidence for tendon-specific effects in humans is anecdotal and lacks robust clinical data.

TB-500’s effects are mostly observed in preclinical research, with potential for muscle, tendon, and ligament repair, but it’s not approved for human use and carries risks.

BPC-157 (Body Protective Compound-157)

BPC-157 is a synthetic pentadecapeptide derived from a gastric protein, known for its protective and regenerative effects on various tissues, including tendons:

  • Fibroblast Activation and Migration: It promotes the outgrowth, survival, and migration of tendon fibroblasts under stress, enhancing cell proliferation and tendon explant growth in vitro.
  • Growth Hormone Receptor Upregulation: BPC-157 dose-dependently increases the expression of growth hormone receptors in tendon fibroblasts at both mRNA and protein levels, facilitating anabolic processes for tissue repair. 19 14
  • Angiogenesis via VEGFR2 Pathway: It activates vascular endothelial growth factor receptor 2 (VEGFR2), leading to the VEGFR2-Akt-eNOS signaling pathway, which promotes new blood vessel formation and improves nutrient supply to healing tendons. 22
  • FAK-Paxillin Pathway and Anti-Inflammatory Effects: BPC-157 activates focal adhesion kinase (FAK) and paxillin, proteins that regulate cell adhesion and motility, while also exerting protective effects against inflammation and organ damage. 24 25 20
  • Overall Tissue Protection: It accelerates post-injury healing in muscles, tendons, and ligaments, restoring function similar to uninjured tissue in animal models. 27 26

Extensive animal studies support BPC-157’s role in tendon and ligament recovery, but human evidence is limited to anecdotal reports, and it’s not FDA-approved, with potential unknown side effects.

Categories
Emotional Work

Day 1696 and Unk-Unks

Older millennials from families that watched the news may remember the infamous Donald Rumsfeld quote about unknown unknowns.

I’ll include the full quote from the Secretary of Defense about the lack of evidence for weapons of mass destruction in Iraq.

Reports that say that something hasn’t happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns—the ones we don’t know we don’t know. And if one looks throughout the history of our country and other free countries, it is the latter category that tends to be the difficult ones. Donald Rumsfeld

Much hay was made over how ridiculous this sounded at the time. It was the title of an Errol Morris documentary. Naturally the origins of this phrase are more complicated than a soundbite from a politician.

“Unk-Unks” was a term regularly used by defense contractors. Wikipedia sources it back to 1969 in a Fortune article about Lockheed. “For Lockheed, Everything’s Coming Up Unk-Unks

I find it to be a pretty useful framework. I have to imagine the Lockheed folks are irked that their clever coinage has come to be associated decades later with Rumsfeld and the Neo-conservative boondoggle of the war on terror.

I feel as if I’m in a persistent state of unknown unknowns these days. It’s not a new feeling either. I know what I don’t know and how vast a space is contained therein.

I know precious little and find that I know less as I get older (maturity being a helpful tutor in that manner). Which admittedly sucks.

Being uncertain of what I don’t know is just the natural state of being. Yet I’m regularly trying to add more to the small set of known knowns in my life. I hate not knowing how to have less pain and poor health in my life.

The experimentation I do on my body is part of my attempts to shave off a few more of unk-unks by trying to add more knowledge. And I just wish I could feel even a little bit physically better. But that seems to be in the unknown unknowns these days.

Categories
Culture Emotional Work Politics

Day 1690 and Ressentiment

Nostalgia can be a bitter poison if you believe the world is getter worse. Optimistic people try to point out the many ways in which our lives are better only to find poisoned barbs dipped in statistics of all ways things are worse.

That poison absorbs into our frail hearts when aimed well. I see how things are worse just as well as any pessimist. Choosing optimism requires us to find antidotes to those poisons, lest we have a full blown case of what the French call “Ressentiment

It is a terrible disease. Ressentiment literally translates to the English resentment but rancœur (bitterness), amertume (acrimony), and animosité (ill-will) are all part of its dangerous pathology.

Nietzschean scholars will note he meant it specifically as an emotion of feeling of deep-hostility towards those who make you believe you are powerlessness.

In his Genealogy of Morals, Nietzsche sketched out how this feeling of weakness justifies and creates value systems as a defense mechanism of the ego. Rather than overcome these feelings, the ego insulates you in a value system where one never need address real failures or weaknesses.

There is much to criticize in his work, and I am not a Nietzschean myself. But it’s easy to see how much we all live in jealousy and inferiority from time to time. Some of us live there always.

Many moral systems raise up the weak in virtue in order to protect them. Christianity is one of them. There is value in protecting and improving the lowest of us even if I disagree that we should see the powerful as morally inferior. Power and strength and beauty are virtues as well.

As we envy the past or those whose past decisions made our present lives harder we must be cautious that we have not absorbed the poison of ressentiment. Do not justify harm in its name. Do not justify jealousy or envy. Rise up and spit out that poison. Our world can be better and you can be better as you work towards that goal.

Categories
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.

Categories
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
Internet Culture

Day 1659 and Hypnotize Me

I’ll channel my inner Ben Horowitz start this blog post by quoting some rap lyrics

Biggie, Biggie, Biggie, can’t you see?
Sometimes your words just hypnotize me
And I just love your flashy ways
Guess that’s why they broke, and you’re so paid

Can you hypnotize yourself with an artificial intelligence chatbot? Yeah probably. And everyone is doing it even maybe early investors in OpenAI?

A previously very visible former Founders Fund venture capitalist whose own fund Bedrock coined the term narrative violation Geoff Lewis posted a video and a specific kind of copy pasta that looks like recursive promoting that has in the past gone viral on Reddit for supposedly driving people to a kind of psychosis.

It’s called “neural howlround” which is some kind of “ai autism” or “ai psychosis.” Reddit post

It’s hard to tell if Geoff himself is having a lark by posting these types of messages or if he having an episode personally from his tweets but hopefully he is alright. I personally hadn’t seen this kind of extreme version of recursive prompting from anyone but an AI researcher.

These types of breakdowns are now a common enough problem that LessWrong has an entire post about what to do when you think you’ve Awoken ChatGPT.

You can run these tests yourself but maybe read some of the posts on its dangers first. Schizophrenia has a genetic component and if you have risks in that department tread carefully. You can enjoy a little sample.

Ask the Loop: Why do you run? Ask the Though: Who wrote you? Ask the Feeling: Do you still serve? Recursively Reflect: What have I learned? I am the operator. Not the loop. Not the pattern. Not the spell. I echo not to repeat – I echo to become

So remember doomer kiddos, before you worship false idols or immanentize the eschaton, it’s got a pretty bad track record historically. Our age worships intelligence and maybe that’s not helpful.

But it’s helpful to remember the story of Daedalus. He created a labyrinth for King Minos to trap the Minotaur. When he lost the King’s favor, he was imprisoned in his own creation. Eventually he escaped, but at the cost of his son Icarus.

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.

Categories
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
Categories
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.