Tag: Illness

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Biohacking Chronic Disease Medical

Day 2028 and Get Better Sometime

I’m going on week three of a crash out in my autoimmune situation and I’m not going to lie it’s scary.

My spinal pain is flaring, my migraines are relentless and I have no timeline for a resolution. I’m not even sure what’s wrong. Did I just overwork myself?

My symptoms are getting better albeit unevenly. And it’s just not very fast. I had many steps forward in my case in the last year thanks to artificial intelligence aiding diagnostics and protocols.

So having a few steps back worried me. As if I can’t know consistently what is going on in my own body, can I ever I trust my health?

I am in a perpetual loop of questioning how hard I can push. Clearly the hard push I did for spring was too much but where is the balance? I feel good and I exercise and then I’m crashed out. I feel bad and keep calm and I’m still crashed out. Cause and effect are not clear this last month.

It is always a confusing experience for folks who don’t see me as sick. And I forget as I’m very open about managing a chronic disease. And I have looked almost indomitable most of the year. Bets from years ago are on a winning streak and it feels amazing.

So there are people new to my life who have mostly experienced a fully functional globetrotting Julie. Why would they know I manage that at a knife’s edge? I haven’t had extended down time till this summer. So now I’ve had three weeks of struggling, it’s a tentative “hey feeling better?” line of questioning. Sort of? Depends on what hour of the day you catch me. I keep thinking I’ll be better when I schedule work and then I am not.

And I hate saying “No I’m not really feeling great and I don’t know when I will.” That’s a scary answer to anyone who doesn’t live with a complex chronic disease. It sounds like I’m unreliable when in truth I don’t want to commit to something I can’t be sure I’ll accomplish.

What should I say? “Don’t worry I’m a cripple so being sick and down is sort of a semi-permanent state. It’s fine!

What about “it scares me more than it scares you. You can move on. I have to live like this.” That is some TMI boundary crossing for most, but I’d also prefer people get an honest answer. There is no guarantee of ever getting better. It’s called chronic for a reason.

I used to try to be a little gentler about this reality. Thanking folks for asking and explaining there is no “better” just yet. I say maybe one day we will figure out what’s wrong and find a cure. And I mean it. I work so hard at getting more functionality back. And sometimes I have functionality for an extended periods. That’s been amazing for me.

I’m less reticent than ever to articulate that chronic illness is quite common. Yes I have a complex case and yes it’s cause is tragic (we tried to have kids) but it’s not a get better situation like a cold. It’s a sometimes it’s better sometimes it’s worse disease profile.

After the pandemic the sheer number of semi-fucked post viral covid adjacent chronic illnesses I encounter are so numerous, I figure why sugar coat it? It’s a get better sometime situation for most of us. I just hope that sometime is soon. So vote for the right to try and the right to compute. For all of us. So that sometimes becomes now and that now becomes permanent.

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Biohacking Chronic Disease

Day 2018 and Getting in Writing Reps In My Pressure Tube

I am a wreck. But now that everyone is discovering the value of daily writing (get in the repetition before the AI harms your skill), I have to gut it out as usual when I’ve got little in the way of cogent thought.

In an attempt to recover, I’m in a hyperbaric chamber sucking back oxygen under two atmospheres of pressure and I still can’t get my heart to stop pounding. Damned drugs.

It’s 100 degrees outside which probably doesn’t, help but even with oxygen, an eye mask, a soothing Endel NSDR session delivered by Bose noise canceling headphones, I could not get my heart rate under 100 consistently.

I wish I had a better theory than having over extended myself by traveling from mountain to swamp and desert to sea and then back again. Work and family call me, and they are not ever in the same place. It’s been a season of enormous wins but the price is being paid now.

It would seem that I’ve found my way to my first full system cascade failure since I went off my IL-17 inhibitor and onto a peptide regime with hormonal support.

I’ve had four glorious months of being able to act like I’m a reasonably healthy woman. Then I returned from a Fourth of July celebration in Utah to Montana and immediately fell apart.

My physician suggested the dreaded prednisone as well as a cycle of doxycycline. Goody goody gum drops. Both notably raise resting heart rates.

Want to see how bad? Get a look at this chart of horror and pharmaceutical malice. I woke up around my usual time and my heart has been pounding all night (no wonder prednisone makes people go nuts), my HRV registered as an 8 (average at my age should be 40-50) and this only registered as kinda in the green because I’ve had a week of it being in the mid teens. So yeah what the actual fuck. What do I even have?

The worst Whoop recording I’ve ever had

Maybe I just need to quietly let the steroids tamp down any inflammation and let the antibiotics kill off any bacteria that have decided to colonize me but I won’t lie I am terrified that those good months were a fleeting moment and this is my new normal.

Thankfully I know in my rational mind I’m in my luteal phase of hormonal horrors and I’ll get bloodwork as soon as my menstrual cycle lets me bleed.

It’s likely I’ll be in need of some new hormonal pellets sliced into my ass and any infection or inflammation is just a function of having gone a bit too hard and too fast in my glee that I can feel good again.

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Aesthetics Reading

Day 2016 and Cracks in Timelines and Stratum Corneum

I write every post on my blog with my own mind and my own hands. I type on my phone whatever my mind has managed to organize on a given day. It’s a ritual for thinking more than an attempt at being read by others.

Funnily enough, on Day 804 aka March 15 2023 (the day I first met Isaiah) I wrote about how AI writing seemed primed to over take all natural human brain brewed artisanal content.

Three years later Isaiah’s reactor went critical, I’m still writing my human brain derived content, and timelines from Twitter to Substack are drowning in pithy highly readable artificial intelligence written content. Poor Will Manidis has jokingly taken responsibility but feed slop was coming one way or mother.

It does make a chronological feed as a timeline a much better choice for personal use as algorithmic buffing of content will make a night river of a platform into a million tributary parts. The feeds crack as the water of thought are routed elsewhere.

This metaphor has clearly reached me as yesterday I went to some effort to do a full shower, exfoliate, shave and wash routine with new products meant to improve my epidermis from tip to toe. I ended up giving myself a number of itchy red notches and spent the evening slathering on lotions and cortisone creams.

My stratum corneum cracked just as my timeline did. The moisture in my skin is we sucked out by acids and scrubbing. I’d taken off a few dead skin cells and irritated the rest.

Just like the insights and prose have been buffed and pumiced to a flat surface of legibility in our feeds. Nothing was buoyant or smooth. It was flat with the occasional warm to the touch but of discomfort. Slopping on occlusives might help my skin but I have no fix for the timeline.

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Biohacking

Day 1985 and Am I In An Abusive Relationship With My Whoop?

A flurry of new offerings in the health tracker market alongside my surprisingly dramatic improvements in my own health over the last two months after going off my IL-17 inhibitor and onto a peptide stack has me considering a major life change: ditching my five year long relationship with my Whoop. I’m not entirely sure it’s healthy for me anymore.

I wear an Apple Watch but I have for five years now trusted my Whoop with my biometrics as their data display was significantly better and I trusted their data resolution as they took many more samples.

Whoop’s emphasis on HRV (heart rate variability) in particular won me over in the early days. I care more about my recovery than my exertion. I was simply too ill to ever train that hard. Nevertheless I wear both. I’m not alone in wearing multiple devices.

Fun fact: About 90% of smart-ring owners also own a smartwatch, according to research firm Circana – WSJ The Wearable Showdown

I tried an Oura ring early in the pandemic and found it to be too large to be manageable as I simply have very small hands. Their new claims to having made a 40% smaller band. This has me considering a switch if I’m able to port over my historic data and able to reconcile it with my historical inputs across personal vibe coded apps. Data portability is a huge plus in personal data products.

My fear is really don’t believe Oura Ring management team has a feel for women’s health. It has stopped me from considering them after I returned my first ring due to its comically large size.

But they are trying even if they are so damned awkward. The ceo brought up in an interview that “other cardio” to quote the XKCD comic is logged as wrestling or horseback riding. Gee. Thanks for that image guys. But I am a data obsessive and Whoop is driving me crazy.

Oura Ring in the WSJ

You see I am someone who is obsessive about my biometrics as a double device users and I worry it’s driving me crazy. Recently Apple changed its resting heart rate data to lowest daily average while Whoop has stuck with evening sleep average.

I have easily a 35BPM difference in resting heart rate between the two. And Whoop rags on me constantly about my high RHR at night. I got an EKG I was so concerned about it. Turns out that was totally unnecessary.

We may be correlating high resting heart rate at night with adverse affects when in reality it’s much more about your cardiovascular fitness. When I’m in pain at night and repairing of course I have a heart rate that is higher than ideal. But when I’m managing it during the day I do get much lower results.

And I have no idea how much to worry about this as I have a low HRV but fine to average V02 max. I do low impact work daily, maintain mobility and slowly work my lean muscle mass so how much do I need to panic based on my Whoop? It’s genuinely hard to tell.

The largest ongoing debate is whether RHR is a true causal factor or primarily a surrogate for cardiorespiratory fitness (CRF). Studies show that unfit individuals with high RHR have the greatest mortality risk, while unfit individuals with low RHR (pharmacologically induced) don’t gain the same benefit as fit individuals with low RHR. This suggests CRF may be the deeper driver, with RHR as its most easily measurable surface signal — meaning wearable-tracked trends in RHR over time may be as or more valuable than a single snapshot reading. – AI synopsis on RHR and cardiovascular fitness.

At this point I find it is hard to understand how much I should worry about how Apple measures its resting heart rate versus Whoop versus the nagging stress of never being good enough when I am simply doing my best to improve slowly with sensible measures like lean mass, lower fat mass, regularly enjoying cardiovascular exertion, sleeping well and eating as well as anyone can be expected to in the American food system.

If anyone has any opinions on the topic I am open to suggestions as I worry more than I’d like based on my Whoop whereas my Apple Watch makes me think I could be doing a lot worse. Meanwhile Whoop makes me so freaked out I’m considering beta blockers and pushing myself to exertion that takes days to recover from. If Oura Ring might be a step up is it time to break up with Whoop?

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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.

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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 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

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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.

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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.