Tag: Biohacking

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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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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.

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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
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 Media Travel

Day 1652 and Back in Istanbul

I’m a mess and somewhat scared. This abcess saga has grown from dismissive preventative care visit (which I did did out of an abundance precaution) and ended with me meeting a general surgeon at a Turkish medical tourism hospital tomorrow to discuss labs and my ultrasound. It’s my second time this year so that’s quite an endorsement as a revealed preference.

But I am serious with this sidebar. Don’t go to SkincareMT’s dermatology practice if you have a layered case that needs more involvement. I found Dr Oetken pleasant but entirely unaccountable when a patient needed advice and weightings on a complex case. I should have known better.

I was afraid she would be a box checking paper pusher afraid to give an opinion. But maybe younger doctors are afraid to treat that way given our system. I needed to know is it worth getting a clearer diagnosis before it is a crisis? Is imaging necessary? I have a set of drugs I take with these specific side effects. Given that risk profile and nuance at hand needed the interpersonal relationship that would guide me.

I do endorse SkincareMT’s cosmetic practice, and Addison in particular is fantastic, but their healthcare wing is clearly designed to extract maximum Medicare dollars from Montana seniors. 

My failure to get an ounce of prevention means I’m flown to Istanbul to attempt to get a pound of cure. Don’t worry I was already in the Mediterranean. Not in the way way some think though.

Yesterday we found out by pulling teeth that I had a problem. It’s clear I need this excised and quickly. The ultrasound is gnarly. Drainage, removal of the foreign object, and potential curratage to make sure the walls of the cyst are removed forever are what is needed. 

The sprawling medical tourism complex in Istanbul is amazing and I trust them more than any other system or talent pool on the planet right now.  What they have built is an incredible achievement and in challenging conditions.

Doctors who listen, who educate you on your options, and most importantly are up to date on current research and global innovations so don’t give you glassy eyed stares when you mention a new medication like a next generation IL-17 inhibitor it’s exotic side effects.  American doctors like that are rare and their hands are often tied by our horrific mess of state failure and lack of market innovation. 

I’m relieved to have choices like “general surgeon or gynecological surgeon” and texting discussions with my case lead (a full time liaison for you and your family on the entire case) on how we will handle excision and culture pathology. 

It does feel like I’ll have good choices. But it also seems like I booked less time than is necessary and I don’t know how I feel about that. A week of waiting on labs in a hotel while in pain is scary. Sure I can work and be productive and maybe even do some tourism but I just want this shit sliced out, an IV of the right antibiotic that will work and some sleep. 

I’ve been doing some crazy bi-phasic sleeping as the Mediterranean is hot as hell from noon to 10pm. So I’ve been doing a bit of staying up late and sleeping in to avoid the heat. It’s not clear how much it’s messing with me yet because I’ve got all these odd infection fever doctor nonsense. A quick surgery and some answers can’t come fast. Thankfully I’m at the crossroads of empires.

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.
Categories
Biohacking Chronic Disease Medical

Day 1649 and Physician Heal Thyself

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

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

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

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

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

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

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

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

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

Categories
Biohacking Travel

Day 1647 and More Sleep

Fifteen hours of sleep and a spa day does fix a week of disrupted sleep. I may need some more downtime of resting and recovery and maybe more water drinking before I have a cogent thought.

Rocky Mountain High
Freedom Thongs
Sweat it out