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
Homesteading

Day 969 and Hot Chicks

I know it’s a little bit odd to be getting chickens in August, but as of today our homestead is now home to eight egg laying hens.

Our new hens (in their well fortified chicken run) settling in at our hone.

Some of our friends are moving and needed a local home for their laying hens. Another one of our friends was giving up their old chicken coop so we figured it was a sign from the universe that it was time for us to become chicken people.

Unboxing chickens

My husband has spent the last two weekends repainting the coop, installing predator fencing, and otherwise preparing for the arrival of the chickens. Having not done the work of raising them up ourselves the pressure is on to make sure they are well protected.

A little red henhouse

You can’t just take on a friend’s chickens without feeling just a bit more responsibility than you otherwise would had you raised them up from chicks ourselves. We can’t let a literal fox into the henhouse.

This is alas real possibility as a red fox roams our pastures. We’ve got a very tasty infestation of prairie dogs that are suitably stupid enough for an even moderately clever fox. Hopefully the 18 inch predator apron is suitably troublesome to keep our all but the most enterprising. We’d rather the prairie dogs remain the easy snack and our hens too much effort.

The funniest bit of all of this is that I am slightly intolerant to eggs. I can manage eggs in a baked good I find omelettes, quiches and even mayonnaise to a quick path to nausea. Even the smell of eggs being scrambled makes me a bit sick to my stomach.

But I’ve got a fantasy that industrial eggs are the problem and I could come to tolerate eggs from chickens living the good life roaming around our lovely Montana land. And if not we will give them to our neighbors. If we can find one that doesn’t have their own chickens.

Categories
Politics

Day 968 and Precautionary

Do you recall learning Hippocratic Oath at some point in your schooling?

First do no harm

That turns out to not even be in the original oath but one of the many varied additions over the ages. The more often repeated phrase is translated as follows. “I will abstain from all intentional wrong-doing and harm.”

The document dictated standards like keeping professions secrets and avoiding using poisons knowingly for suicide or abortions. But somehow in popular imagination “do no harm” has really stuck.

Now we are stuck with the precautionary principle as it’s heir. The principle suggests there is a social responsibility to protect “the public” from harm when there may be a plausible risk even in theory. Big ups to Hans Jonas’s imperatives on responsibility for giving us the ethical frameworks for technological skepticism.

We apply the precautionary principle in many fields from medicine to the military. It suggests precautionary protections should be relaxed only if there is evidence that no harm will result. It’s for your own good!” It’s included as a statutory in some areas of law. Progress can’t be too fast lest someone get hurt

But before you give too much credit caution, it’s important realize the cost of inaction can be high.

As Mercatus Center’s Adam Thierer put it, “Where there is uncertainty about future risks, the precautionary principle defaults to play‐it‐safe mode by disallowing trial‐and‐error progress, or at least making it far more difficult.”

The inclination to play things safe can have incredibly high costs for people who need progress. Much the current debate around artificial intelligence is centered on doomsday scenarios. Safety and alignment researchers bring up terrifying scenarios as justification for taking things slow.

But we shouldn’t be too quick to dismiss what AI can do to make life better. You want to tell someone with a painful chronic illness it’s better to wait on medical progress because of some theoretical harm? They already live with an all too real harm that we should be just as eager to to fix with powerful new tools like AI.

Fuck Safetyism

I’d rather we adopt a more ambitious attitude towards problem solving. Fuck your safetyism.

We need to put a complete moratorium on the precautionary principle until we’re sure that it doesn’t have any negative consequences

Categories
Biohacking Emotional Work

Day 965 and Bounce Back

I had a really shitty day yesterday. I was attuned to the haunted corners in myself and others. I was in an astonishing amount of pain. I got into a fight with a family member over a misunderstanding.

I found myself in a state of reactivity. It’s a huge challenge to manage nervous system regulation for me when I tip from the pain scale from my typical 4-5 to the impossible ignore 7-8 range.

I have become quite used to living with pain that would be distracting for others. I monitor biometrics like my heart rate variability to keep track of how stressed my body is from the pain.

I’ve found it important to learn how to bounce back from unexpected pain. It’s important to stop stress and reactivity in its tracks. If you let stress hijack your nervous system you can do yourself a lot of damage.

I took care of myself last night. I did what I needed to get my nervous system under control and the pain manageable. And it worked.

I turned myself around today. I lifted weights, I meditated, I took my supplements, and I tackled my work load with pleasure. I can feel the fatigue sweeping back in as the day winds up. But I can rest easy knowing I set myself up to bounce back again tomorrow. Budget for the body you have and not the fantasy one which you don’t have.

Categories
Culture Emotional Work

Day 964 and Haunted America

I’ve been getting the sense that more and more of my social circle is uneasy about our cultural moment.

The personal battles being waged are numerous and deadly. The losses feel as if they are mounting even for those of that look objectively successful to the outside.

Health challenges and illnesses are debilitating and expensive. The past traumas of dysfunctional families weigh on the more functional among us. Families struggle to cope with addiction, depression, and suicide. Violence eats around the edges in too many cases.

I see more people pulling back into perceived safety as they look to escape the wounded and the traumatized. We’ve got enough troubles in our own family so why take on problems that aren’t our own?

The ghosts of bad decisions and long troubled histories linger. The weight is heavy and I see people stumbling.

Categories
Emotional Work

Day 963 and Chronic Stress

I don’t think of myself as living a particularly stressful life. I’m one of the luckiest people I know. I love and am loved by my family. I own a homestead in Montana. I work with brilliant people.

My one burden in life is my health. I don’t want to undersell how much it affects my life (my ankylosis needs careful management) but I simply treat it as a fact of life. There is no reason to be upset about reality.

As social fabric tears and lives get worse under stress, it’s easy to become a victim to the things in our lives that trouble us. We can compare our gifts to others but one man’s troubles is another man’s perfect life.

I see the stress that is affect everyone I encounter. The fears range from existential to quotidian. Everything from the challenge of finding a doctor to the collapse in fertility rates can be a sign of the times.

I work to regulate my nervous system to accommodate whatever reality is in front of me. Sometimes that will include stress lot of my control. But I can work to control my response to it.

The better I get at this process of regulating myself I open up to the world. Taking on the agency you have available to you is a powerful social signal. I connect with others more readily as I show others that I can take care of myself.

Categories
Community Emotional Work Media

Day 960 and Summer Frailty

Rounding the bend into a thousand posts is teaching me some lessons in humility and frailty. I am reaching to get words word as my mind is slow.

I am not reacting to something in an average way and it’s been a struggle to keep going over the laser week or two. I’ve put one foot in front of the other but I can see that I only slept for a couple hours last night. Ironic to be considering averages when one’s own responses are so slowed.

I am just trying to get through August. If my standards are simply to plod through then any achievement like throwing a successful policy night or recording a podcast for Wealth Actually on early stage venture capital count for something.

Much of my struggle is probably just some better living through chemistry problems. A new addition to the biohacking routine went awry. I’m struggling with the heat wave and the air quality of summer in the mountain west. The long days of bright lights slowly unspooling my sanity as I wait for cooler less cruel months to come. Just breathe in and out and try to eat and sleep.

Categories
Emotional Work

Day 959 and Averages

I did not react to a drug in an average way. I’m really pissed about it. I went in so confident based on what the studies has shown. We’ve got this fantasy of science and specifically medicine that has very little appreciation for what it does to outliers.

We discuss what’s most likely. What’s average. What’s typical. We explain the difference between mean, median and average. We have rigor. We have regressions. We can come to an understanding of what the models agree is conforming to our understanding. You should probably see these results.

And then we gloss over the bad data. The outliers. The grits of sand. The flecks of reality that make your model jitter. The shit that just makes things more complicated. So maybe you toss it out.

And it mostly doesn’t matter. Because your body probably is pretty average. And that’s a great thing. We tell stories about what it means to be unique even as you are no different than anyone else. Pixar movies are about our ineffable spark of humanity soul even as it reflects on how we are all really just the same. Shared human experiences are universal. Probably because our bodies are pretty similar.

I sincerely believed I was average for most of my life. I was raised with that as a value. And now as an adult I see how I’m average in so many ways. But my body will never fully reflect a shared reality. You get to know what works for you even if you know what boundaries are a little different for you.

You’ve got to know the contours in which you are exactly as your reality would indicate. That’s your ego speaking generally. But the ways in which you are not matter too. That’s where you tailor treatment.

Categories
Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.