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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.

Categories
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.

Categories
Medical

Day 950 and Good Teeth

I’ve always quite liked dental hygiene. Twice daily brushing and flossing after every meal has always been one of those daily habits for me. I do not compromise on it. You’ve probably seen me with a toothpick after a meal. Taking care of my teeth is just engrained into my routine.

It would seem a lifetime of good habits pays off. I’ve only had a handful of cavities (I think two) and no issues with grinding, my gums, or other periodontal problems. My teeth have been so chill that when I was broke I went to the NYU dental school for care. I learned a lot and it was cheap.

I finally found myself a dentist in Montana and went in for an intake and a cleaning today. It has been about a year since my last dental visit. I came through with a clean bill of health. They took a bunch of X-rays and fancy imagery and nothing looks problematic. Flossing really does pay off it would seem. You should do it!

I am happy my teeth are in good shape but slightly pissed. You see last year a dentist in Boulder did her best to convince me that I needed a root canal. A lifetime of good dental health and I’m being pushed for oral surgery for a tooth that didn’t even hurt.

I said I didn’t feel any pain or discomfort so I wasn’t inclined to get surgery prophylactically. She seemed a bit pissed. She did her best to insist I go see an oral surgeon. I demurred. I did not want an additional medical issue that was voluntary.

Now a year later, a dentist with much more advanced equipment could not locate the issue and told me I’ve got nothing to worry about. Maybe she got it wrong? He couldn’t quite be sure what she saw as his imagery and X-rays didn’t show any issues. I had no sensitivity or nerve issues so it’s possible she got it wrong.

We have a tendency to believe credentialed professionals like doctors, dentists and lawyers. They must know right? I’d never have considered saying no to a root canal before last year but at the time I just didn’t feel like I could handle an invasive procedure. And thank goodness I pushed it off.

And it does turn out that dentistry as a profession has issues with unnecessary treatments and fraud. This investigation in the Atlantic discusses how prevalent unnecessary treatments are in America.

Had I not turned down a root canal last year I would have subjected myself to something I didn’t need. Given my chronic health issues, you can imagine that I’m not eager to spend money and time on treatments I don’t need. Particularly ones known to be painful with the potential for side effects like infection. So be careful out there. And I hope you have a dentist like mine in Montana.

Categories
Biohacking Medical

Day 949 and Stomach Stuff

I was very excited for today. My first Monday with my new schedule after my “season of no” cleared the calendar.

I am into the day brimming with optimism. Naturally, it was only fair that I lost my entire day to some kind of stomach bug.

I am experimenting with a new GLP1 agonist and have found the side effects to be troublesome. I made an attempt to have a protein shake and it cascaded from there. So I don’t have much to say today except that my biohacking went awry so I’ve got little to say.

Instead I’ll recommend you go read my post from yesterday on assigning value. It’s some thoughts on alignment for artificial intelligence and the impossible task of being sure we all share the same idea of value.

Categories
Culture Medical Politics

Day 948 and Assigning Value

What does assigning value mean to you? How do you begin to investigate what is valuable? If someone asked you to value “object X” do you know what tools you would use first to make a measurement?

If I tell you determining value is a cultural problem, you may investigate the problem of value through religious or philosophical frameworks. If I tell you value is an artistic problem, you may use taste in finding value.

If I tell you that assigning value is primarily a computing problem, you may search for weightings, databases and referents to determine value.

So what happens when determining value has to account for multiple or even contradictory frameworks? Which framework assigns the ultimate value? And how do we align them?

Congratulations, you’ve known become an artificial intelligence alignment researcher. I bet you thought that required a doctorate but it doesn’t.

It’s not an entirely intractable problem. The Industrial Revolution found ways to align competing frameworks. We assigned labor value and made currencies to facilitate the exchange of different goods.

Markets can, and do, spring up for all kinds of previously impossible to value things. Capitalism done its best to make cultural value fungible and legible to an agreed upon value. Sure, artisans and artists complain we conclude incorrect values regularly. But we don’t always agree on value.

Generally we’ve found that what can pay for itself survives and what can profit for others thrives.

Not all people are motivated by profit, but we all are motivated to survive. And so we contribute what we believe has value to each other and hope the frameworks of value that others have will align with ours. The balance between the two has held together humanity for sometime.

But deciding on value isn’t the same thing as a thing driving a profit and we have to remember that truth. Between the gaps in the models of what we value is the epsilon of what cannot be calculated.

If you’d like to read a horror story on how assigning fungible value in a database can end up assigning a value to something we humans generally don’t consider interchangeable at all, then I’d go read this piece on how public hospice care’s incentives have been perverted by private equity profit motive.

I don’t always agree with the author of the piece Cory Doctorow. But I think he’s raising a powerful point on how we are assigning value when we overlay competing frameworks.

This is the true “AI Safety” risk. It’s not that a chatbot will become sentient and take over the world – it’s that the original artificial lifeform, the limited liability company, will use “AI” to accelerate its murderous shell-game until we can’t spot the trick

If you aren’t familiar with Doctorow, he’s a powerful voice in right to repair circles, a classical hacker opposed to corporate oligopoly, and a bit of a anarcho-syndicaticalist in his preferred solutions.

I like markets more than governments for most things. More of us can contribute to markets than we can contribute to specialist bureaucracies

But we have assigned value to end of life care inside the convoluted system of profit motives and medical ethics and it’s not the value most of us share on life.

And that’s going to happen a lot more as we get further and further abstracted away from the existing models of value that govern our lives. So remain skeptical when someone tells you that they know what you value. How they assign value might be different than you.

Categories
Culture Medical Politics

Day 945 and Secrets and Safetyism

Keeping secrets used to be a lot easier. Noble philosopher kings with priestly knowledge kept that shit under under lock and key so some uppity courtesan or eunuch didn’t get too clever.

Not that it was all that necessary. Nobody was accidentally misinterpreting the layers of mystical knowledge because illuminated manuscripts were expensive as fuck. And that was cheaper than the previous method which was memorizing oral histories. The expense of sharing information has acted as a control mechanism for centuries.

If you’ve got the money, you can store your sex toys and drugs in layered secret drawers behind a hidden bust of Socrates. But some asshole will post a primer online and your benzodiazepines and vibrator will be long gone.

The metaphor I’m working with on this silly desk is that humans love to horde secrets. We’ve got a lot of incentives to keep knowledge locked away. Drugs and sex in my joke mere proxies for ways we access altered states. Eve’s apple was a metaphor for forbidden knowledge so I’m not reinventing the wheel here.

So where are we today on secrets? Well, I think we are trying desperately to put the genie back in the bottle.

We think we’ve got an open internet but ten years ago Instagram stopped including the metadata tags to allow Twitter to display rich content embedded directly in a Tweet. Now Twitter and Reddit are taking the same approach as Instagram did as data ownership becomes a hot issue.

Closed gardens are meant to keep thieves out and Eve in. And depending on who you are it’s likely you will experience the fall from grace of Eve and the persecution of the thief. God clearly knew something as his conclusion was that once you’ve tasted the bitter fruit there is no point in protecting paradise.

Every time there is more access to information we have the same debate. Fundamentally you either believe people should have access to information and how they apply it to their lives (side effects included) or you don’t.

I’m happy for you to argue the nuances of it. Want a recent example that looks complex and might actually be deadly simply?

The clown meme format asks if it’s
a joke to conclude confident that “LLMs should not be used to give medical advice.”

I know it’s tempting to side with the well credentialed researcher over the convicted felon when faced with a debate over access to medical advice. But I don’t think it’s as simple as all that.

From Guttenberg to the current crop of centralized large language models, it’s just more complexity and friction on the same old story. It is dangerous to let the savages have access to the priestly secrets. I for one remain on team Reformation. Rest in power Aaron Schwartz.

To quote myself in my own investor letter last month.

Most builders remain deeply skeptical of Noble Lies, “for your own good” safetyism, regulatory capture, oligopoly control, and the centralized nation state control as the most effective methodology of innovation for a dynamic pluralistic human future. We are having cultural and financial reformations at a frightening speed. It’s beyond future shock now.

So if I have a gun to my head (and that day may come) I’d like to have it on record that I don’t think secrets have any inherent nobility. It’s just a control mechanism. Keeping people safe sounds noble. But you’d be wise to consider how you’d feel if your life depended on having access to medical data. How would you feel if the paternalism of a noble lie to keep you from it? It’s not great Bob.

Categories
Medical

Day 928 and Season of No

I feel like I’ve been caught in a loop of shitty things that has me in a “fight or flight” pattern that I can’t find a way to release myself from.

I’m having a very “if it’s not one thing it’s a other” summer. And it has to stop here. If I don’t let it all go I’ll be miserable and it will have been my own choice. I’ve got a choice to prioritize the well being of myself and my family.

I’m writing this at the oral surgeon’s office as my husband’s wisdom teeth removal is today. I’ve been given several lectures on how challenging his recovery will be as he’s so much older than the ideal extraction age.

Teenagers have a lot better bounce back rates than even late thirty something apparently. Fingers crossed being fit and healthy counts for something.

I’m stressed by the prospect of prioritizing myself and family. I like being open and available to the universe.

So I’m just going to start saying no to more and more things until I feel like I’ve got myself out of this misery loop. My priorities will remain my family, my fund, my founders and myself. Probably not exactly in that order but pretty close.