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.

Categories
Biohacking Medical

Day 927 and Standard Operating Procedure

I’m going to be nursing my husband through oral surgery recovery this week. He’s run out the clock on wisdom teeth and they all need to be removed.

We will miss a few obligations this week but such is the nature of medical need. Necessity doesn’t always come when you want it. If we don’t do it this week we’d be waiting till November for the next appointment. Such is getting medical care in this day and age.

I’ve been in a bit of a frenzy preparing as I myself have some medical issues that are chronic so if we are both fucked up physically it gets a little tricky to manage routines. Particularly because we live a little bit country these days in Montana.

I’ve gone down a deep rabbit hole of procedures for surgical recovery. I looked up standard operating procedures for inflammation and surgical recovery from every source I could find. I consulted with our doctors. I looked at risk factors.

You’d be surprised at how optimal procedures differ from the standard median recommended ones. The fear of overprescribing pharmaceuticals runs pretty rampant even when it’s clear that some protocols would be beneficial like say post surgery prophylactic antibiotics. The NIH, Mayo and Cleveland Clinics agree it’s a effective way of preventing complications related dry socket. The condition can turn into a painful infection that is relatively dangerous if it gets out of hand given it’s proximity to your brain.

But we can’t make an antibiotic standard operating procedure as it’s not technically necessary. Especially since we have prioritized using less antibiotics overall as a public health policy for the wider social good of preventing antibiotic resistant strains of bacteria. Good of the many versus good of the one. I’ll admit I’d be inclined to say that my husband deserves the Spock treatment even if it is illogical.

I’ve written out an hourly schedule for the recovery procedure I intend to follow. I won’t post it all here as it’s obviously not in my best interest to disclose it. It’s involved and intended to reduce inflammation and have the maximum pain management that is responsible so that my husband’s body can recover quickly with no unnecessary stress.

Proteins powder, bone broth and soft foods

It seems as if a lot of recovery comes down to simply retaining adequate electrolytes balance with enough liquid calories. You have to meet a macronutrient balance that gives enough protein to knit the tissues and not make the body think it’s resource constrained. Which is harder than it sounds when you can’t chew or even suck on a straw.

I’ve got a number of techniques to leverage from lymphatic drainage massage to the woo woo options to reduce stress and promote recovery and I intend to use all of them. And yes I’m available for nursing.

Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Medical Preparedness Travel

Day 884 and Who Hurts First

I spend time in Europe for professional reasons. Some of my founders are unable to reach the United States as our visa program has become untenable. So I spend time in places founders can reach me. Trade crossed all borders.

Just in the last two, I’ve had Nigerian, Indian, Albanian, and Russian Jewish founders years find themselves unable to secure visas to visit America, not even for professional conferences or tourism. It is much worse with HB1 or O1 visas. You may not think this problem doesn’t affect you, or may even benefit you, but can I assure you one day it will affect you negatively. American industry was built by immigrants.

At first I thought I could simply work around America’s travel restrictions. Capitalism will overcome the inequalities our states have wrongly thrown up to divide us.

But I am learning that climate change and failures in sustainable energy policy is making it much harder to travel with a disability or chronic medical condition. Heat is a strain some bodies can’t take. And mine is one of those bodies. Migraine sufferers are too. So are the elderly. It’s quite common.

Last year I briefly did that American thing where we pretend we the Mediterranean lifestyle is aspirational by spending two weeks on the Ioan Sea. Utter disaster. I am not calling White Lotus a liar, but I couldn’t possibly imagine how hell could be worse than a heatwave in Sicily in July.

Watching the Germans treat air conditioning use like some sort of criminal shameful behavior was a vivid reminder that society always chooses who we hurt first. A policy that is for the common good may find uncommon hurt delivered to those we didn’t consider. It’s not deliberate but it may as well be.

If you paid attention during the pandemic you probably learned a lot about how we treat the sick and weak. Now imagine yourself as an one of them. It’s almost enough to make you consider becoming a reader of Rawls.

The end result for me is that I don’t believe I’ll be traveling to Europe except in the winters going forward. I can’t risk the lost days of productivity to something stupid like a default hotel setting for 72 degrees. I feel a bit robbed by this. Grief even that even late May is too risky to be on the road.

It’s a small thing to have your travel be restricted in a world of bigger sorrows, but the feeling of having your opportunities narrowed hurts. I’m sad because a utilitarian neoliberal wonk decided that most people would be perfectly comfortable with slightly warmer rooms. The finance teams at the hotels agreed. It’s not so bad. It doesn’t bother them. I wonder what other decisions won’t bother them. And whether they will hurt me unintentionally.