Category: Chronic Disease

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Biohacking Chronic Disease

Day 2020 and Summertime Sadness Sick Season

I am feeling better today after a what felt like a long week of crashing out from a busy quarter of work, travel and side quests. As I was looking at my archives, it seems like mid July has traditionally been a time for medical crisis.

Last year it went from surgeries in foreign countries to two years ago hacking a long covid Nicotine experiment, but even further back I have struggled with energy and vitality and viral infections in these months. It shows up in my data year after years and the tags like up.

Maybe these heat death statistic needs to include the general quality of life dip that comes with a hotter climate. If we once went inward in to our psyche in winters and enjoyed summers of slightly crazy hot joy that life is passed.

Maybe the long now of the perma-weird has cast a shadow of stuck culture which that I see more clearly when life becomes unlivable outside. If you keep living out in the world things do move forward. It’s less pleasant to touch grass when it’s dead and a fire hazard. And so the summer slows us down enough to see inside ourselves

I spend more time inside in the summer than I do in the winter. And given that my home is in Montana, you’d probably expect it to be reversed. Thankfully we only have two months where the weather gets into the “indoors between 9am to 9pm” heat risk. Other lower latitudes have more troubles than we do and blessedly our power comes from our own solar grid so I never worry about running air conditioning.

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Chronic Disease Internet Culture Media

Day 2019 and Thot Police

I don’t have much in me today as I spent most of my energy on showering. What a depressing thought.

Showering is what’s considered a “vasodilating activity” and that can cause problems if you run it too hot. It can make dysautonomia (if you don’t know what that is how did you make it through Covid19) go wild and just generally makes me realize I’ve got some orthostatic issues happening during this flare.

Given that I’m having a fun high BPM couple of does, I got dizzy and that spirals into a migraine and then my whole system gears up and ooops I’m curled into a ball scrolling and texting.

It being 100 degrees in Montana today means that we’d need to run a water cooler not a water heater to get a comfortable lukeroom temperature. Our sauna is being in the shade of the barn is currently cooler than the outdoors. Just funny times but hey I’m doing my bit for the environment.

Despite the embarrassment of needing to sit down to scrub up, I thought I hoy through it with as little energy exertion as I could manage. And I still felt like shit.

So I figured why not compound it with more time on Twitter. It’s true that the website is for bored billionaires and the deranged and sometimes that’s a Venn diagram.

That’s really more of a loving joke as I enjoy the “hell site” even if it has positively allergic reactions to women posting pictures of themselves. Guess everyone is overheated amirite. Oooowoooogaah.

To be fair seeing a website for witticisms and breaking news become just another OnlyFans funnel stop is irritating. I pay up to the big man hoping it won’t get that bad. It’s got network effects for technologists and we have work to do.

And yet the platform most of us are marooned on is showing us it’s thot police time pretty much constantly from the media to the peanut gallery. If that poor founder who made a robot hand so good that Wired that immediately sexualized it, maybe the theory that we are in for a Puritan reactionary period is both correct and a bit overdue.

Too much signaling of sexual availability and hitting a paywall is just a funny way for that to happen. Like objectively access was always paywalled by culture and contracts. But I can see being indignant about it pervading all social spaces.

Heck if the robotic use is half as good as Wired made his work sound maybe we can solve more pressing problems like having a robot scrub down our Boomers & chronically ill so cleaning up doesn’t kill us? It can probably hold a loofah without anything going wrong right? And nobody use it for anything too nasty if it can’t consent. Don’t prove Wired right. May Lady G rest in power.

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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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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

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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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.