Tag: Biohacking

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Biohacking Chronic Disease Emotional Work

Day 1964 and We Are Who We Tell Ourselves To Be

No one likes a gloomy Gus. The downside of chronicling a chronic disease is the risk of seeing yourself as only the illness. Then other people will see you that way too. And so your identity becomes tied with only one of the many aspects of your life, and often the worst one at that.

Thankfully most humans are centered enough on themselves to forget the occasional gloomy reality from someone outside of their daily lives.

But repetition becomes reality, and eventually we are who we believe ourselves to be because others believe we are who we say we are too.

I came across a startup who is working on one of those classic swamp problems that seems like a great idea until you are well and truly stuck in the muck with bad incentives and no good solutions.

They want to use artificial intelligence to help patients with chronic diseases or complex medical cases to codify the many little details that might add up to the clues that crack the case.

By tracking subject inputs (unstructured data) and overlaying it with the other biometrics gathered by wearables and bloodwork they can help patients. I’ve seen hundreds of variants of this over the years.

Alas this new startup seems to have discovered a flywheel for marketing that relies on the problem I began today’s post with. We believe what we tell ourselves we are and eventually other people will believe what we believe.

They have chosen to market the app with illness influencers. Yes, that’s an actual category of influencer on TikTok and Instagram. Hot girls all have vague chronic illnesses these days haven’t you noticed?

And so a community forms and reinforces the identity that they all share. They are sick. And that makes them special. This gives life meaning. And did I mention lots of pretty girls have the most esoteric and exiting problems? Click to join now!

I find this to be a troubling, even borderline dangerous, approach to anchoring a community meant to help patients advocate better for care with their own personal health records. The incentive to remain with the privileged identity that makes them special only increases over time. Women reinforce themselves into intensely held identities all the time.

I thought about reaching out to them but I don’t want to get tangled with this problem. It is one for professionals which neither myself nor these founders are aside from everyone being a patient with chronic illness.

I do not wish for my identity to be the sick woman. The woman whose life was upended by a fertility protocol gone wrong in the early years of her marriage and in the prime of her life.

It’s one aspect of my reality. I do want others to be saved from my fate so I share it. But it is not who I am. Julie is not a sick woman. Julie is a complicated individual with a beautiful life and family and portfolio.

I had my own glimmer of hope today. Though I have repeated my troubles with my medical history I have never felt it was my identity. I’d happily give it up if I find a path to wellness. And I spend so much of my life trying to walk out of my troubles.

I have walked many side roads and pursued quixotic quests to find health. And some days I even find it. Today I got very good news on a fresh round of bloodwork. I’ve felt recently felt well thanks to some changes and an aggressive pursuit of new modalities.

I never want to get my hopes up too high as this effort has been a rollercoaster of ups and downs. But I won’t let go of the hope. The mere idea that this chapter could close and I might be a healthy woman is an identity I’d gladly welcome. And I’d wish that for anyone who takes on illness as a part of their identity.

Categories
Culture Medical

Day 1962 and Piss in a Can

Women are at a bit of a disadvantage to men when it comes to relieving ourselves. Yes I am talking about taking a piss.

From road trips to the backcountry, we’re forced to hike up our skirts (or worse shimmy down our pants) and aim our stream through squat & thrust such that it lands where we desire without soiling our garments or surrounding areas.

You might be wondering why I’ve got such a urological topic on my mind. And I might remind you it is not as if my writing lacks for lewd colloquialisms. Some readers may recall my viral hit “dick riding” so if you are inclined towards Freud we can have a chuckle about penis envy. And today it might even be true.

I am at the moment stuck in a literal can. I am nearing the end of a session of hyperbaric chamber oxygen therapy. To be specific, my 27th session on my second round of the therapy. My first round of it was forty sessions last fall. I am rounding the end of my second set in the next two weeks.

I happen to feel dare I say good this most recent round of HBOT. It’s a marvel what it can do for the lungs and for healing wounds. However I can’t credit my current upswing just to the oxygen I’m breathing in while under two atmospheres of pressure.

I have gone off my biological injection Bimzelx after a frightful year of infections despite its excellent ability to squash down inflammatory biometrics like CRP and sed rate. I’ve added in hormone therapy via testosterone and estradiol pellets (also my second round of them). The big change is that I am heading into my forth week of injecting experimental peptides.

Those had a hell of an adjustment, but seem to have done absolutely everything which was claimed by their champions in terms of anti-inflammatory benefits. Alas I am not sure if I should discuss them too much lest I get in trouble for being ahead of the insurance rackets. My doctor supervised and approved of them which should be good enough but one never knows.

That was a long way of saying that this combination of discontinuing old expensive therapies and adding in new cheaper less expensive treatments is adding up to a lot more mobility and capacity for me.

So today I went hiking and I lifted weights. Actual under the bar squats in my own rack like an actual human. The kind of active life that I’ve been desperately trying to regain for years.

So I’ve drank rather a lot of water today. More than perhaps I should have, as here I am in a pressurized can absolutely desperately wishing I could urinate.

Alas I am waiting the timer praying for decompression to arrive so I can relieve myself in a proper water closest. And thus we circle back to the penis envy.

It’s just that I have an empty can in here with me, it’s not out of the question I could find relief in that manner. Perhaps I’d have a better treatment. My heart rate is higher than I’d like and my bladder is unhappy about the pressure. But I’ve got no aim and little room for error.

Just imagine the smell. If urine smells in a well ventilated area like a roadside rest stop, just imagine how it might smell in a pressurized tube. It’s not a place you want to fart I’ll tell you that much. So wetting the blankets, upholstery, and my clothing in here would be a disaster. I’d never get the smell out.

So here I am laughing to myself about wanting to piss in a can. Maybe a good reminder to buy one of those hiking helper devices for women. You never know what kind of situation I may find myself in this summer if I can actually move my body comfortably again.

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Biohacking Chronic Disease Medical

Day 1956 and Mother’s Day Message on Fertility

One of my mutuals Riva Tez wrote an exceptional read on her research into the American approach to fertility, and in particular, the maximalist hormone dosing that goes into programs like egg freezing, embryo freezing, and in vitro fertilization

It’s a topic on which I have written extensively, as I am one of the women who was hurt by the American approach of high hormone intensity to extract eggs efficiently. To make a long story short, it kicked off an autoimmune process in me that we’ve never fully gotten under control.

I think a lot about what the fertility industry did unknowingly to me and how it forever changed the course of my life. I went from thinking I had an insurance policy to being too ill to work within the space of a year. There is no recovery for me as of yet, even though I spend quite a bit of time and effort on my health.

If you were a millennial or Zoomer thinking about these procedures, I’d like you to consider reading her research and my personal experiences and educating yourself so you can make the most informed decision in your family planning.

Becoming a mother may have been an easy or unexpected decision for other generations of women, but we live in a very different time with very different technologies and different social constructs.

The more you know about your options, the more likely it is that you will find the right path for yourself without doing harm to your body in the process.

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Chronic Disease

Day 1954 and Constriction

I am in so much pain today. The tendon bands that wrap from my sternum around my thoracic to my spine is badly inflamed. It’s hard to breathe smoothly when your own tendons are choking you out.

I had a fairly intense week what with the chaotic back and forth in the national policy debate around artificial intelligence. There have been swirling rumors and much back and forth. Nothing feels worse than seeing your own industry shoot itself in the foot as the stakes get bigger.

Last night Alex and I went for a long walk in the long hours of sunset. It felt as if every living creature from the ducks in our pond to horses out to pasture was taking in the perfect spring evening.

We stopped and chatted with each neighbor as being outside was on everyone’s agenda with the clear sky and warm weather. The joy of greenery had the undercurrent of concern. A dry winter will have its consequences. One of our neighbors who keeps horses mentions their hay costs had doubled from last year.

The worry and activity is taking its toll today. O am paying for all this activity. My activity costs are just as high as alfalfa. From phone calls and activism to sunset rambles through the foothills the costs are mounting. I am hurting from the good and the bad.

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Biohacking Chronic Disease

Day 1950 and No Sleep in the Long Hours

I seem to have accidentally fallen into polyphasic sleep. Those experimental not for human consumption, long amino acid chains that everyone is doing n of 1 research with?

Well, my n of 1 experiment seems to be yielding the occasionally odd sleep pattern. I’ll be up early after having a night of sleep that feels more nap than fully weighed sleep hours.

Think out by 9pm and awake before dawn. I feel fine, so I pack in the full day till around 3pm when lunch digestion & the general slumps have me saying “maybe a short nap.”

I’ll find myself popping back up at 6pm with an eye on dinner. Another accidental siesta has stolen the afternoon hours back from the long evening hours to which I’d applied them.

I won’t have any trouble going to sleep on time early. This pattern seems to be applied to days where I have a lot of physical strain.

If I get in a workout, a long shower, extra walking time, and other physically demanding tasks in alongside my mental work I end up needing the nap and still fall asleep on time.

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Biohacking Chronic Disease

Day 1948 and Rotational Work

I’ve been struggling with migraines since I was diagnosed with an autoimmune condition maybe six or so years ago.

I seem to be particularly struggling with them the last two months, as I work through an experiment with hormonal balancing and tapering off biologic autoimmune inhibitors.

And so I am rotating various different activities every day in the hopes of avoiding triggering a migraine, while still getting in adequate movement and exercise, as well as treatments within the biomechanical profile that I have put together with my doctors and helpful AIs.

If I stuff too many experiments into a given day, I’ll almost surely end up with a migraine. Even if I only do one sometimes I get unlucky. Red light and infrared are, of course, a classic way to trigger a migraine, so I try to do those carefully and when my heart rate is stable and low.

Of course, sometimes you need to get your heart rate up, and there’s nothing you can do but get your exercise and hope it won’t trigger a migraine. Afterwards exertion when I have a need to get down my heart rate, I’ll try to mix that with my hyperbaric oxygen chamber therapy.

I’m in the middle of my second round of HBOT treatments and enjoying seeing things like my VO2 max improve. I’ll be tempted to do something like go for a longer walk to test my lungs and trigger some neck compensation, and then I’ll be right back where I started with a migraine.

I’m always rotating something in and around keeping my brain from feeling the pressure of my body’s adjustments. There is no stable equilibrium just the constant pressure to find a new balance.

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Aesthetics Biohacking

Day 1947 and Pretty Skills

I have been feeling rather sad. I am stymied on a few matters (family matters, visas for said family) and absolutely wretched over the state of artificial intelligence. The successes are in shadow and so I need to cheer up.

In an effort to do, I have a little group chat going for women interested in having friendly conversations about pretty skills. That’s right being pretty is a skill set. From nutrition and exercise to scalp care and makeup, looking good is a series of skills that can be taught.

If one feels like personal agency is a stretch, nothing is quite so fine a balm as learning a new skill. And might I suggest your personal appearance as an easy uplifting place to start?

Pulling together a beautiful look is not just some genetic privilege meted out by fate. Our presentation is something we sculpt with attitude, posture, movement, care and thousands of tricks and tips that add up to a lifetime of skills. Pretty is a skill set.

If you didn’t learn those from your mother or aunts or an elder sister. Or if you learned everything and want to pass it down. It’s safe to share and learn the skill sets you’ve picked up that make you feel pretty. It’s in your hands.

So if you want a space to learn more about those skills there are a bunch of women who want to be friends with you.

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Biohacking Chronic Disease Medical

Day 1945 and Always Adjusting

I am adjusting, yet again, to a new set of daily protocols in my never-ending attempt to improve my health. I am experimenting with peptides but don’t tell anyone. I’ve also got a hormone experiment in its second round.

I am trying to get healthier, but that suggests it is even an achievable goal. It would be wonderful to get back to endless working hours or even just eight hours on my feet.

Every time I make a tweak to my routines and I see a change in my biometrics, it’s becomes eventually cause for concern. There’s no stable equilibrium to be found, and I know that’s part of life, but I’d like a stable equilibrium that’s a little bit better than one day at a time or ideally a couple weeks at a time.

Take my experiment with Bimzelx. Even when I achieve an outcome like getting my CRP rates into the normal bounds, it came at a cost that is simply too high to maintain. I had four separate incisions and surgeries last year from soft tissue infections.

What good is a drug that tamps down my immune system so much that I need to always go under the knife? It was like Goodhart’s Law came to haunt me personally.

I am going off the biologic (I am 12 weeks from my last injection) and already seeing change in the wrong direction. Not enormously bad but my immune system will pop if it’s not locked down.

Yet there’s very little I can do except keep going and hope that the balance will be more manageable, as I don’t know that I could have another year like 2025 again.

I set out trying to reboot my immune system last year, and it certainly seems like it worked. But can I keep the numbers in a place that are low enough to let me live, and ideally live with fewer medications?

I am constantly working against some new tweak or some new problem, and even little gentle experiments like a Pilates reformer workout or 10 minutes on the trampoline can turn into a full-day migraine if I am not immediately able to tamp it down. Thoracic pain will pop up crushing my breathing if I take a nice slow hike in the pastures beyond our house

Categories
Chronic Disease Medical

Day 1943 and Lubing Up My Synapses

I’ve struggled with migraines for the lasts seven years and change. It came along with my autoimmune diagnosis but has lived a separate life from ankylosing spondylitis and psoriatic arthritis.

Typically I get them in my luteal phase of my cycle but as I’ve began to experiment with hormones in pellet form (just tucked away in my fat) I’ve began to struggle with them on a more regular basis. It’s no longer tied to any phase of my hormonal cycle.

I don’t know what I did today to kick one off, but about an hour ago I had to lay down in the dark because I just cannot seem to get any relief from the pressure inside my head.

I have a prescription for something called Imitrex, which helps quite a bit, but I’d really prefer to not have them in the first place.

I am not sure I can get anything else out today, except that this is happening and I can’t fix it, so my apologies there.

Categories
Startups

Day 1936 and Life Inside The Jackpot or I Remain An Optimist

I did not expect to spend so much of my time on politics. Or maybe that’s the wrong word. I look being in voluntary service to American governance as my civic obligation. It can look like politics even when it’s mostly trying to be helpful to the running of our polity.

After 2016 I felt regular citizens like myself needed to recall Kennedy’s patriotic inaugural address from 1961. “Ask not what your country could do for you, but what you can do for your country.” America is a complicated place but we get a say in it. And I’d like to help people understand what I know so it might be useful in serving America in very strange times.

My mother loved Kennedy’s profiles in courage. Boomers have beautiful mythos on facing the new world together. He was the first president born in the 20th century. The social compact of America changed quite a bit then. I wonder who the first president born in the 21st century will be. Maybe it will be another young Catholic man.

The optics of progress aside, it was clear as a new generation in Kennedy’s era took on a new obligation to come together when the American experiment felt at risk. So much about who benefit from the military industrial complex rested in the transition from Eisenhower to Kennedy.

I think the context is a little different when progress feels inevitable. Our moment is scary. Though the Cold War was not primarily optimism. They experienced as many breaks with institutional trust as we do in 2026.

Tines are different but I do not think the prescription is different. We owe it to each other to embrace change together. What can we do for America?

I am not the son of a mobster nor am I a nepo-baby of America’s great cultural surplus. I wish. I’m not presidential material or Tiktok star material.

I do have some singular cultural advantages. I am a regular person from slightly unusual circumstances that happened to enjoy some upwardly mobility which let me to participate as an equal in an important transition point. I am actually rather surprised to matter at all. But I do and I intend to advocate for America succeeding together in this change.

I do take technology as a force in society seriously. I believe surplus is an amazing thing. My life is completely different than my biological history. Given how my human DNA was programmed and what I can do daily beyond that you bet I take artificial intelligence seriously. Material progress is real.

I take the physics of demand seriously. It seems like not everyone is confident we can speak to the general public about what it means that the technology industry has found a way to automate itself. It is a scary thing to say. And we begin with ourselves. It is actually our jobs that go first. If we believe it can be better on the other side of the Jackpot live like it.

And I do. I live a little further from civilization for the peace and quiet and because I am a little uncertain. But artificial intelligence’s new incredibly malleable models have changed my capacity by an order of magnitude. How wish I could have had this when I was a software and cosmetics founder.

I am a heavy user of all the hosted commercial models because they are in fact very good. I can do so much more across all the areas of life where I have to figure things out on my own.

I have health problems that are expensive and challenging. I’m lucky to be able to explore extensively the web of issue that drive having a body which has decided it must overreact. And I am in the process of fixing it. In ways that I’d never have had access to before Claude or ChatGPT. I have comfortably setups in spreadsheets and web apps and we can map years of bloodwork and experiments.

I think America is having an autoimmune reaction to the idea of automation as the end product of artificial intelligence. We sense it as a threat and it’s both terrifying in its potential but also a bit of the optimism has waned as the culture of technology fails to engage the mainstream as normal or even beneficial.

It’s the same process of making life better we have run. We took all our brain power to make our physical jobs easier. This has largely been viewed as a benefit to everyone except by strict biological determinists. Bronze Age romanticism is just that.

Thanks to progress in mathematics, we can now make knowledge that was extremely expensive to find, query, and organize as as accessible as asking an expert a good question.

Which is actually still tricky. Most Arthurian legends seem to resolve on knowing what to ask in order to receive wisdom. Knowing what to ask is not easily solved by mathematics. It’s not actually a cheat sheet but rather a powerful way to enable yourself. If you wish to take on that responsibility.

I feel I am somewhere between Hill and Valley in that I work in this world and I chose to become civically engaged. And I am concerned about where we are at. I am genuinely an optimist though as I think humans are so very adaptable. So I try to translate between the tribes who run our system and the tribe of people who make the systems run by the first tribe.

Maybe it’s be being somewhat in between that lets me be a node between the hill and the valley in America. Or as others frame it as a tripartite of Athens, Jerusalem, and Silicon Valley. I think that’s a bit grandiose only because maybe empires run on roads and plumbing but let’s not get forget that power is diffused in a network era. Every node that can route information has power.

The criticisms technology rightly takes from our body politic is that we are going quite fast. I know. I am inside the Gibsonian Jackpot with you. And I know it’s hard to believe that living through the change can be good even if we have inklings of the way life is already better right now. So we have to work together to figure it out.