Tag: Life

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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.

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 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 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 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
Categories
Travel

Day 1644 and Problems Behind Me Sleep Ahead?

I’ve got a comically large sleep debt to work off. My Whoop is screaming at me as it’s been 3 days of not quite getting in an adequate of sleep.

And it’s not as if I was enjoying great sleep for June. It’s possible my new Whoop hardware just has bee algorithm and set of standards as June was mostly dead.

First it was emotional “really in it feelings” that gave me a half night as I woke early as the upset remained.

Then the anxiety of preparing for a long trip while the aforementioned emotional impact hung unresolved (though I had cried it out) which made deep rest out of reach. Four hours is half of my usual needs.

The middle night between issues and my packing day didn’t get me much better sleep. It was a long day of logistics and I never quite came down.


Airplane sleep doesn’t lend itself to dreams

And then I was on an airplane and trying to catch some Zzzzzs but barely managed under three hours. I feel great as I’ve just kept on swimming great white shark style, but I know I’ve got almost a full night of sleep dent built up.

Still it’s hard to feel too badly about things when you look down on the beauty of the world below.

Leaving Montana
Categories
Travel

Day 1643 and Like A Shark

The travel is the kind of stint that requires the logistics of being in perpetual movement across climates and time zones.

I’ve been moving for what feels like 24 hours straight as I did the dance of managing feelings, working to get across to other people, unloading and unpacking and then promptly repacking again as I’ll be on the road for a stint.

I had a shark phase as a child and the lore says the perpetual movement of this ancient predator is required lest it perish. I’d love to know how rest and sleep works in that sort of murky depth as I’d loved to know how we might incorporate it.

As it turns out of the 540 species of sharks only a handful have what’s called Obligate Ram Ventilation which means the faster they swim the more oxygen flows through their gills. If the strop meaning the oxygen drops and they literally die. Great white sharks are the canonical example.

When I am angry I consider the question of whether humans are indeed the apex predators of our environment and if it is in my nature to flow the oxygen and predate upon the wide world who crosses my hungry wrath. My own Christian faith asks for a very different answer and I obey. But the hunger is in all of us.

Categories
Emotional Work

Day 1642 and Really In It

I really spent some time in my feelings today which isn’t exactly how I wanted to spend my day. Though I couldn’t exactly tell you why I don’t expect to feel my way through the day. All real works requires you to balance the intuition of working from one’s gut.

The world is tense and our place in it doesn’t feel assured. Every time we experience a norm change or unsettles the balance of our social order.

It sounds so dramatic but we balance trust with the boundaries necessary to make choices that work for each of our own consciences. Some things are more the basic math of a situation. We need are feeling precarious.

As I do this writing exercise tonight there is a raging Rocky Mountain thunderstorm. They come on with such fury it can take your breath away. These storms are intense and rapid and blow in and out with inn half an hour. The atmosphere after has an uneasy calm. Rage is nature’s game not man’s.

They do drive you inside which is good as I have packing to do. I am venturing off and I’ll be feeling my way through that too. I’ll blow out myself soon and let the world show me where to go.

Categories
Community Travel

Day 1640 and Ebullient

Having spent a whirlwind 72 hours at a campout with weirdos I am in a very good mood. Minus getting called demonic by a coward who wouldn’t face me, the entire trip including the long drives was amazing.

It’s always a pleasure to spend offline time with real people. Especially when they disagree with you. Which happened a lot as it was a fractious group of eccentrics from all walks of life.

Technologists, theologians, farmers, military men, musicians, mothers, writers and even a journalist or two. We were missing a trucker friend and a former hobo (his wife is due to deliver a baby any minute now) but it was full in spirit.

We drove home through golden time with a sunset so brilliant it made me wish I could capture even a fraction of its beauty with paintbrush or camera. Alas it will remain a memory that is impossible to share.

Stopping for gas and getting Maxfield Parrish