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Internet Culture Medical

Day 1069 and Fever

I both literally have a fever in my own body while I am watching a fever burn through one of my favorite extremely online communities in the form of effective acceleration memers versus a heavily armed establishment unit of academic utilitarians. Who would like you to know they aren’t effective altruists I’m sure.

I myself enjoy a good internecine debate as I became a Calvinist as an adult because fuck it the Reformation is the home of the institutional skeptic. Flame wars are the modern 95 theses. And naturally everyone involved thinks their counterparts are reactionaries. Tyranny of small differences.

I’d say more about this but it’s later in the day and like I said I am running a fever. My immune system is remarkably active so I’m honestly shocked a fever got through at all. I actively beat my immune system into retreat so whenever it gains ground I am annoyed and confused. So it’s probably best if I sign off as it’s never a good idea to be letting your fever dreams get the best of you.

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Medical

Day 1043 and Differential Diagnosis Failure

I’m throwing something up here as I am fairly certain I’ll be out for the rest of the day. I have thrown back an entire pharmacy in an attempt to remedy a barrage of symptoms that are so intense I can barely process.

I thought I had a cold or potentially some kind of flu based on my initial symptoms like heightened respiratory rates, congestion and pain in my muscles. But as the day progresses I’m not so sure. The mucus is clear and was easily improved by a Mucinex and cortisone nasal spray. The remaining symptoms of lowered body temperature (which feels feverish) a migraine, and tight muscles are now much more acute. I guess the cold medicine I took was a waste of liver stress.

It’s messy and conflicting and neither myself, my husband, my doctor nor the artificial intelligence chats have managed a differential diagnosis.

My hope is that with the sheer variety of drugs that we have thrown at this that I’ll be passed out for the foreseeable future. Maybe a full twenty four hours of sleep can fix this. Hopefully you will see me cheerful tomorrow.

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Medical

Day 1008 and Pesky Hormones

I’m enjoying a double header of hormones today. I’m in my luteal premenstrual phase which always leaves me tired and emotional. But I am also just letting go of the last bits of adrenaline and cortisol from my travels last week.

As the last bits of stress hormones drain away and my cyclical hormones flow in all I can feel is the weight of the world. I’m sure this dramatic phrasing is merely a function of the pounding hormonal migraine that always accompanies this time of my cycle.

If this all sounds a little foreign to you, Alisa Vitti’s life’s work has been to help women understand their hormonal cycles impact. I’m always looking for ways to hack my physical performance and health so I’ve been especially focused on pesky stress hormones.

Hopefully a little bit of salmon, some greens, and more rest will get me through it. And by next week I’ll be well on my way to peak creativity and energy. The lull will pass soon.

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Biohacking Medical

Day 1003 and Externalizing

My body gave me a bit of a surprise on the road. I keep a close eye on my inflammation as it’s the first trigger in my autoimmune condition. Generally it manifests internally as swelling in my spine or joints. But it didn’t always. My inflammation used to manifest externally on my skin.

I woke up today in Tallinn without my typical spinal pain but covered in red welts. If I had to guess, some change in climate, pollution, or weather was the culprit. Stress is stress and you can’t always predict how it manifests. I’m so used my body being in pain I’d forgotten that sometimes symptoms can just as easily manifest on the outside as the inside.

It takes an entirely separate set of medications to manage inflammation on my skin as it does to manage inflammation my joints and spinal column which is a bit of a pain in the ass. I am much more eager to treat it. Maybe it’s easier tolerate being in pain than being red and itchy. You’d think it would be the other way around.

Given that my body feels a bit stressed I’ll keep this short today. Hopefully the manifestations of inflammation calm themselves down and I won’t be dealing with either tomorrow.

Categories
Homesteading Medical

Day 987 and Eggs

One of our hens died today. My husband took on eight chickens from one of our friends a month ago It was an exciting moment. He really wanted chickens and it felt like great luck.

The family was moving and so Alex stepped in. If it were just me alone I probably wouldn’t have any animals as I don’t necessarily always have the physical capacity to do daily chores. I realize that’s a funny statement for someone who lives on a homestead in Montana but you get used to your limits and work around them.

But my husband lives for doing shit. I call him a “man of action” as he’s happiest when working on something. Chores and animals and homestead work are a hobby for him and I’m deeply grateful we could bring that way of living into our lives. I am envious that he has the capacity as there are few joys as deep as improving the world around you. I wish I could do what he does.

So it’s sheer bad luck I find myself on my own when one of the hens died. Alex was literally gone for a day and one of his birds dies on me. I feel responsible for the death even though I know I am not.

Death happens. Chickens are strange finicky animals and do in fact sometimes just up and die. I’m capable enough with death. I did plenty of farm work as a kid. But I’m not the one who does the bulk of the hard physical work and never will be. I contribute other things.

I simply wasn’t expecting that with just one day on my own being responsible for the hens that something bad would happen. But there I was finding myself responsible for dealing with the physical reality of a dead bird on my own.

I happened to have a doctors appointment in town this morning so I didn’t check on the chickens when I woke up. And that’s what I feel worst about. That I didn’t even notice.

I got in the car, went to get my own eggs checked (a follicular ultrasound if you are curious) and came back to find an entirely different egg problem on my hands.

I went to collect the morning’s eggs and saw a red hen laying underneath the raised coop. I briefly panicked wondering what the fuck was I supposed to do. She was clearly dead and I’d missed it. I’d just left for town without even checking on the hens.

I panicked and tweeted that I’d had no idea what to do. And then I found the heavy duty trash bags and nitrile gloves and moved the carcass out of the coop. The remaining hens seemed disturbed. The leader of the group in particular was quite vocal and came up to me as I was moving the body.

They didn’t seem to mind the body in the coop but began loudly clucking at me as I pulled her out. Did you know that chicken rigor mortis sets in about three to four hours after death? I do now. The body was in rigor when I found her so she had clearly died overnight.

I feel horribly guilt that I didn’t check the hens before I left for the doctor. But what would I have done? Judging by the rigor she was dead before I woke up.

I’m not sure I could have done the clean up quick enough to make my appointment. But the idea that the hens were just poking about next to their dead compatriot for any additional time while I went about my business of living seems horrifying. I guess that’s my own human bias setting in as they didn’t seem particularly disturbed by the body only by me removing it. I bagged it and put it in a bear proof trash can. I pulled up poultry disposal procedures and asked my internet friends what the duck to do next.

Some of our neighbors came over after their workday to help me dig a hole in the back pasture to bury the body. Digging a hole 3 feet down to keep the predators from sniffing it out is the recommended procedure.

I wasn’t up to the task of digging a grave on my own. Mostly because I’m not good enough with the tractor to get the post hole digger mounted. Thankfully I had help.

The remaining hens had laid three more eggs in the intervening hours. I had also learned in those hours that my ovaries were producing more than ample follicles. It would seem that, like our hens, I produce eggs in adverse conditions too. The circle of life in just one day.

Categories
Medical

Day 985 and Know So Little

Every time I have have cause to interact with any medical speciality I find myself blown away by just how little we know.

I’ve been going back to doctors to understand what my options are for living with an autoimmune condition and having children. And the truth is we just don’t know much.

I made a life altering decision several years ago by letting a medical decision be framed to me like a consumer product. We opted to freeze eggs and embryos and it turned our entire lives inside out. It triggered an autoimmune response in me that I’ll live with forever.

Somehow in the intervening half decade years we’ve learned precious little about women’s health and fertility. And we are advocating for somehow knowing even less.

Because that’s what we’ve done by letting the government into our health decisions. Don’t kid yourself into thinking when we involve government and bureaucrats we somehow improve our knowledge and safety. At it’s most friendly, when the government shows up it’s about ass covering. At it’s most hostile it’s about control.

We argue about ethics, safety and life as if we even have a shared ideal of any of those concepts. Whose life? My life? My unknown children? I’m not convinced we ever cared about women’s health as an independent variable. We treat fertility as a sideshow and hormones as some variable over which we pretend to have control. And yet every time I try to assess my own risks I find out that we known just about nothing. There are no good answers. And it’s all poorly understood risks.

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Medical

Day 983 and Down For The Count

I have been felled by a migraine today. I’ve been unable to tolerate light, noise or food for a little under twenty four hours. Probably one of the worst migraines I’ve ever had but my suspicion is that it’s tied into a few other issues.

My husband was struggling with some type of infection. It never popped at Covid on tests but given the prevalence of various forms of colds, flus and other illnesses popping up in the back to the arena phase of fall I wouldn’t be surprised if we were both fighting something off.

I am hoping that staying in bed and drinking gallons of water and electrolytes will pay off tomorrow. The intensity of the pain has been unpleasant. Add in nausea and I’m mostly staying still and praying for relief. I’ll catch you all tomorrow.

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Medical

Day 982 and Not Small Men

I’ve been working on getting a deeper understanding of my hormone profile and where I can better support my cycle.

I’ve been surprised by just how little we seem to know about women’s health and the baselines that are considered ideal. Between the battles over health education in school (abstinence only) and the eagerness with which we put my millennial generation on birth control as teenagers, we’ve got both an under-informed and potentially over medicated population. Which wasn’t the case for our mother’s generation who went on birth control much later in life if at all.

A tweet from last week

I’ve had my fair share of fucked up fertility experiences and yet I’ve only just in the last few years learned to understand how my follicular phase impacts me so differently from my luteal phase. If you don’t know what that means either well it’s probably time.

The phases a woman’s cycle

I generally feel most energetic, pain free, and happy during my follicular phase. Despite knowing this I couldn’t tell you what an ideal FSH hormone level would be. I don’t know what balance of estrogen I should have at any given phase. I have no clue what my LH should be during my luteal stage either.

It strikes me that these levels should be taught along with implications for what it means and how to work with them just as we know our ideal blood pressure rage and resting heart rates. It’s some of the most crucial and basic self knowledge about our bodies.

When I think of how many other crucial biometrics I’ve got memorized (I track my SED rate and CRP quarterly for inflammation) it seems odd that something so crucial as one’s hormones wouldn’t be known, tracked and improved. I watch my heart rate variability like my recovery depends on it because it does. So do most serious biohackers.

Knowing more about own health is part of being a responsible adult. And I’m sad that we do so little to educate women on basic rhythms. I can’t tell if it’s a lack of interest from women or a dismissal from the medical profession. Women aren’t just small men.

Categories
Biohacking Medical

Day 974 and Flare

As most casual observers of this daily log have probably noticed, one of my main interests is biohacking. It was a hobby in the time of my life I mislabel as “before chronic illness.” It’s not accurate so much as recency bias. I’ve been into biohacking my whole life because I’ve had to manage an unruly body.

I had the best health of my life between 24 and 34. I am rounding the end of my 39th year as I write today. I didn’t think of myself as being chronically ill for that decade.

Probably why I think of my life as having a “before” illness is more that I’ve been in the worst flare of my life for the last five years. It came crashing down with a one two punch of being a startup founder & getting pumped full of hormones for fertility treatments at 33. I was on bedrest and chemotherapy drugs by the time I was 34.

So I have to remind myself there is no time before chronic illness. There was remission. I had long years of robust health interspersed with autoimmune diseases that flared and were contained.

Diagnosis has been a lifelong battle which started with inflammatory skin conditions and horrendous allergies and ended up with the inflammation going inside my spine and joints. Ankylosing spondylitis and psoriatic arthritis is what codes with insurance.

Looking at my health records, I had my first issues at 7 when I entered school, then after puberty as teenager around 15 & 16. I had to drop out of high school and ran a giant let of standardized tests to claw myself to university.

I was hale for college and my first startup but flared so badly after the acquisition of my first company I was put on an experimental immune reboot protocol. Ask me about being put on cyclosporin without an organ transplant.

My most recent, worst and longest flare was in the five year battle after doing IVF and egg freezing in my early thirties. I’ve only really felt like I was able to work my preferred hours this past year. So perhaps that flare is finished. I don’t want to tempt it. Though I yearn to live harder & faster and bigger.

Writing it all out in a timeline makes it seem like the pattern is introducing change and stress into my routines but also there are two big incidents involving hormones. Being put on birth control as a teenager and then whatever the opposite of birth control might be with IVF. Maybe no more synthetic hormone control for me.

Managing your health isn’t easy for anyone. It’s particularly challenging for me. And if the current post pandemic climate is any indication a lot more people are grappling with poorer health. I wish I could offer more help other than saying it’s not easy but flares can be contained. Sometimes with a lot of pharmaceutical intervention. Sometimes with better habits. Sometimes with time. And sometimes it’s just a crap shoot.

Categories
Biohacking Medical Startups

Day 971 and Patients Rights With Artificial Intelligence

If you are working in artificial intelligence or medicine I’d like to pleased my case to you. Id just like to pass along a note.

The current “responsible” safety stance is that we should not have AI agents dispense healthcare advice as if they had the knowledge of a doctor. I think this is safetyism and rob’s sick people of their own agency

I have very complicated healthcare needs and have experienced the range of how human doctors fail. The failure case is almost always in the presumption that you will fall within a median result.

Now for most people this is obviously true. They are more likely to be the average case. And we should all be concerned that people without basic numerate skills may misinterpret a risk. Whether it’s our collective responsibility to set limits to project regular people is not a solved problem.

But for the complex informed patient knows they are not average? The real outliers. Giving them access to more granular data let’s them accelerate their own care.

It’s a persistent issue of paternalism in medicine to assume the doctor knows best and the presumption that the patient is either stupid, lying, or hysterical is the norm. It’s also somewhat gendered in my experience.

I now regularly work with my doctors using an LLM precisely so we can avoid these failure cases where I am treated as an average statistic in a guessing game. I’m a patient not a customer after all. I decided my best interest.

A strict regulatory framework constricts access without solving any of the wider issues of access to care for those outside of norms. Artificial intelligence has the capacity to save lives and improve quality of life for countless difficult patients. It’s a social good and probably a financial one too.