Category: Chronic Disease

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Biohacking Chronic Disease

Day 1830 and Itchy Twitchy Bitchy

It’s one of life’s truisms that we may wish for prestige, power and money, but none matter without your health.

“The first wealth is health” by Ralph Waldo Emerson.”

I don’t think it is self flattering to admit I have got some amount of respect, influence and capital. And yet every spare dollar and moment I have I spend trying to improve my health.

The other types of wealth I have don’t matter if I’m in too much pain to think or I am so regularly infected that my resting heart rate is in the mid nineties.

Yesterday I started getting what I call itchy and twitchy. It’s often the first sign of an infection that has broken through an altered window of immunity.

My entire body will itchy. Sometimes it will be accompanied by a rash like eczema. If the rash is bad enough to be opened through itching I can easily get a bad infection. The discomfort of all that makes me twitchy from the anxiety of it all.

I suspect I am itchy twitchy at the moment as I am in a city with polluted air from major construction and high air mold counts from the winter rains. It makes me want to hit the road immediately for dryer climates but I’ll take prednisone first.

That should make me very pleasant. Anyone who has taken the steroid knows it’s a joke as the drug makes everyone who takes it feel a bit crazy. And you get fat and moon faced for added insult to injury. So apologies in advance if I’m going to be a bit bitchy.

Categories
Chronic Disease Chronicle Emotional Work

Day 1825 and Thoughts On Five Years of Writing Every Single Day

Much as it amazes me, I have written a public post every single day without fail for five straight years. I’ve not missed a single day.

I’ve written so many posts and essays, it honestly astonishes me. I didn’t expect to have this kind of longevity when I began but the world changed a lot in this past half decade. I am a woman of habits & routines, this blog helps me manage the chaos and instability that surrounds us. And hopefully I’ve become a better thinker (and writer) for this habit.

If you’d like to look back with me, I have a round up of 2021‘s best posts from fashion theory to the emotions of startup exits. They feel like a lifetime ago.

In my round up of favorites from 2022 aka year 2 of the experiment, we moved to Montana, bought our first house, had silly viral hits, & I became a certified wilderness first responder.

In my third year of posts from 2023, things remained intense. I accelerated into chaotic optimism, helped other millennial women understand fucked up fertility, and experimented with living outside America part time to improve my visibility on global issues.

And in fourth year of writing, my round up of my best posts of 2024 really showed a world sped up even further. My essays ranged widely with emotional work, crab bucket zero sum-ism & young men, Vernor Vinge’s legacy becoming our actual reality and the bizarre experience of digital memetics becoming constant real world issue.

So now it’s time to think about year five of the experiment. 2025 was a hard year for me even as it contained incredible wins. Going into it, I wondered how could year five top the past four years chronicled here? It both does and it doesn’t. Life, and the time we spend living it down, isn’t getting any easier. Life is barely human at all anymore. I feel the struggle in myself as I am still very much human.

It’s easy to feel as if I’ve not accomplished as much as my own written records show I did. If you ever feel like you get less done than you’d like, I encourage you to keep a log or journal as it helps show how much can do and how much does get done. Plus if you publish it online you’ll contribute to a wider humanistic understanding as our digital life becomes more mechanistic.

Another facet of this writing experiment has been fighting a chronic disease in my personal life that has no cure. Managing disabilities during with the pandemic years as it overlaid civilization shaking political and technological changes has been hard. I want to work and live as if I am healthy and it isn’t likely to ever be true. I work smarter because I can’t work harder.

I don’t always write about my investments in these posts, but I see how my thesis of chaos has forced us all into requiring more decentralization, compute and power. My once weird ideas are now common knowledge. Now everyone agrees with me.

The end of the neoliberal consensus and the beginning of the artificial intelligence buildout would have been hard on anyone. I’m proud that I was able to turn this change to my advantage.

I realize I’ve written quite a bit about the experience of these years where I wrote daily without showing off the last year of posts.

Since I’ve got one more day before 2025 officially ends, perhaps I’ll put the round up of posts tomorrow as I’ve given an overview of the experience of half a decade of daily essays today. What’s one more day among thousands right?

Categories
Aesthetics Chronic Disease Travel

Day 1816 and Bedding Down

Having put no small amount of effort into preparing to be quietly away from the world for Christmas, I have made myself a very cozy in the chosen retreat.

Preparing for a closed world means I’ll have the freedom to close down myself. My body has been a bit up and down as it usually goes s these days so I’d like to log as many hours in restful response as I can.

Other activities I’d enjoy would be bathing in a warm tub, going for peaceful walks with no one around and reading for hours on end. Which seems manageable. It’s a time for prayer and contemplation.

My only wrinkle is the lack of available prepared food. I mentioned I’d be rather remote. And I did pack as much as was feasible

But if I can’t manage a few days of cooking simple meals like pasta and chicken that would be pretty sad. I’m lucky to have relied on that part of my life being handled by others as I do find the idea of cooking to be almost as tiring as the reality.

All of that moving around on hard kitchen floors as you juggle timers and fire is not a favored activity for someone with spinal issues. Still I’m optimistic if I stick to a quiet routine of reflection, rest and prayer maybe I’ll manage. Or perhaps a miracle will occur and I’ll be fed literally and spiritually.

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Chronic Disease Medical

Day 1814 and Spicy Boi Shots

I’ve been trying to coax myself into taking my final biological injection of the year for most of the day. It’s a very painful shot. The feeling of it is somewhere between stinging and hot sauce being pushed into your subcutaneous fat. It’s spicy

I switched my IL-17 inhibitor for my inflammatory conditions as one of my first actions of 2025.

I was filled with optimism that this new variant called Bimzelx might be the one that finally brought down my biomarkers. And it did indeed show promising results. My CRP and SED rates have never been better.

Alas, the cost is quite high. I’ve got no immune system response to speak of when it comes to my skin and soft tissues. I’ve had four major skin infections requiring surgical intervention and many minor skin infections.

I don’t think I can live with the side effects of the drug even if my inflammatory numbers are better. There is no doubt it’s effectively treating some aspects of my psoriatic arthritis, axial spondyloarthritis, ankylosing spondylitis.

My pain is better so long as I can avoid picking up an infection. I’ve been on antibiotics most of the year. Alas I’ve only had maybe 2-3 weeks without an infection brewing or being beaten into a retreat.

So today may be my last spicy shot. I’ve gone it a full year of adjustment. I don’t relish the prospect of adjusting back to my previous medication as it takes a full year to fully dose on and off these things. But maybe I’ll be lucky and on my final shot in the year I’ll see a change for the better

Categories
Biohacking Chronic Disease

Day 1810 and Bodywork and Open Sourced Tactile Physical Data

I had a really excellent massage recently. The body worker really got under some of the tension points in my body and the compensatory patterns I was hoping for them to work through. I felt like the flow of my energy was reset.

This type of relational work between two people, one with body issues and another one who knows an efficient path for soothing them, need each other. I need relief and they need a payment that reflects their expertise.

Typically this has been labor paid in some increment of time. I paid for an hour long massage but I’d be willing to pay for more hours and the knowledge and capacity to execute that work on myself or through another body worker or tool.

I’ve got a Theragun, a Tiger Tail, lacrosse balls and foam rollers and I try to work through knots and pains. But I know way less than your average massage therapist or Alexander Technique practitioner so these tools are in the hands of a poor craftsman.

I would love for there to exist some type of Open Source Bodywork Database. I’m thinking work flows, anatomy training from video to textbook and routines input by every type of knowledge tradition and patient.

There are humorously already types of open source startups that work on body based API calls. One is called buttplug.io so you get the idea.

I’d love to see workers get paid to contribute their video, audio, and tactile experiences to an open world and ideally be paid a percentage each time it’s used.

Imagine being about to boot up this massage with an automated massage options. Or open share the repo with a therapist with less experience looking to learn. You pay the therapist trainee and for the routine and everyone benefits.

It’s a bit of a fantasy now but I’m sure we are closer than anyone realizes to being able to train these movements into automated systems. Imagine celebrity osteopaths with programs built into something you can use.

I would prefer this be an open source program for human body knowledge so that we learn mechanically the many physical routines and options that exist to make our bodies function better thanks to aligned incentives for everyone to participate. Dare to dream right?

Categories
Chronic Disease Emotional Work

Day 1806 and Trying Not To Upset My Proverbial Applecart

I have had way too many minor (and major) health problems emerge over the course of 2025. Adding in personal life tragedies (the death of my father) and I had a challenging year.

So I trying to keep the last few weeks of the year crisis free. I have already pulled myself out of the day to day to try for a slow wind down of the year. No holiday parties or appearances for me. I am gone.

As I slow down and put distance between myself and the world, I maybe stupidly see it as an opportunity to nudge myself on little health promoting efforts.

After the year I’ve had, I so desperately want to see improvements. Even if simply not collapsing into another infection cycle is a win.

I’ve been trying to consistently work on body basics like muscular compensation patterns and getting more steps each day, but I’m so terrified that even a minor miscalculation in exertion will upset my proverbial apple cart.

I went for a walk on a high mold count day and reached for prednisone. I’ve been teetering on the wrong side of recovery for so long I don’t think I can recall a genuinely good day. My sleep is similarly impacted. I want to have a long night of deep sleep and dream cycles but the best I can manage is just a long night.

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Biohacking Chronic Disease Travel

Day 1800 and On Steroids

I’ve been on the move, and in wet, rainy, and polluted weather (in other words coastal cities) where I tend to do the worst.

It is frustrating to see nearly five years of work in my journals and tracking amount to very little in the face of wet moldy environments.

It’s not a terribly pleasant topic for day 1800 and makes me feel as if I’ve made little to no progress on moderating my immune system.

I’m particularly upset as it’s bad enough I chose a steroid course. I am too afraid of getting an infection. I loathe prednisone. It works so well. It is like a hammer on inflammation.

Prednisone crushes every inflammatory condition instantly. Red itching oozing welts in a matter of hours. But I can speak from hard experience that even though it stops a cytokine storm in its tracks, it leaves you crazy and fat in quite short order.

I am simply terrified of picking up a skin infection as I’ve had a doozy of a year dealing with them in areas delicate and unusual. It’s been horrifying to have issues with eyes, an incision site and abscesses in even more personal areas.

It seems safer to use the hammer before an area of open skin can be found by an invasive species just looking for somewhere wet and broken. I pray it was the correct choice.

Categories
Aesthetics Biohacking Chronic Disease Medical

Day 1787 and On The Same Wavelength

For someone with clear skin on my face (not even a humble brag), I spend what feels like irresponsible amount of time and energy on my skin health. The rest of my dermis is not as tractable as my face. I’ve been fighting eczema my whole life.

This year has been a particularly challenging, as my the IL-17 immune suppressant Bimzelx, I take for my ankylosing spondylitis and psoriatic arthritis (it’s eczema on the inside), has left me almost catastrophically prone to skin infections.

I’ve had maybe 3 weeks without a disaster (and I traveled) though have still needed doxycycline so I’m optimistic.

I am hoping I can rack up a few more weeks or maybe even multiple months without needing to slice an abscess, manage a deep tissue infection, or get a subcutaneous skin infection.

I do have a new weapon in my battle to keep my skin healthy. I recently acquired a new deep infrared cosmetics mask from Beauty Pie that they are calling “medical grade” but mostly means it has one longer wavelength than their previous mask offering.

Beauty Pie
The Dynamo Deep LED™
Medical-grade technology
Collagen-Boosting Mask $238
  • Medical-grade LED mask proven to improve the overall skin complexion
  • Using 1070nm – the deepest penetrating wavelength used in at-home LED devices to date – to reduce under-eye bags and puffiness, and smooth texture and tone
  • Helps the skin look fresh & hydrated. Using 830nm – supports the skin’s natural restorative and healing function – to boost circulation, improve blood flow, and increase oxygen
  • Skin looks plump & glowing. Using 630nm – enhances the production of collagen and reduces redness – to leave skin radiant and hydrated

I don’t know if it will do much but the longer wavelength is an improvement on their past mask which required something closer to 4 months of continuous use to see results and I was simply never off of antibiotics that interact negatively with red light long enough to get any results. Theoretically I should see results in a few weeks with the longer wavelengths.

I can’t recommend it yet as I just got it and I’ve only used it twice but I used it on my face, my neck, my left butt cheek where I had the infection from inserting testosterone pellets (long story if you missed that one) and on my scalp to see if I can stimulate some growth on my scalp as I shed a lot of hair this year from the stress.

That’s about 40 minutes of mask time so no joke but also pretty amusing. I hope I can use it enough between antibiotics rounds for a win as infrared is meant to do a world of good for pain and inflammation in addition to cosmetics so I’ll use the heck out of it while I can.

Categories
Biohacking Chronic Disease

Day 1786 and 40 HBOT Sessions Later

The days becoming shorter has hurt my attempts at getting out in the sun for a walk every day. This matters to me as I’d like to get regular readings of my V02 maximum and my heart rate. I rushed out without sunscreen to get in a mile.

I hit an important milestone in my current biohacking regimen this week. I made it to my 40th session of hyperbaric oxygen chamber therapy or HBOT. I began on September 13th and did session 40 on November 20. I only traveled once during this period (a five day trip) so I could have fit it all in within a two month period but I was consistently doing two hours a day.

I intend to get bloodwork for comparisons next week, but in some ways this was a terribly experiment period. I had a small procedure to insert testosterone and estradiol into my left buttock which turned into a saga when I got a skin infection. Not the procedure’s fault and I’m glad I did it as my numbers are already better.

Fortunately HBOT is renowned for healing soft tissue infections so if I was going to suffer for having compromised immune health across my skin biome, then at least I had the state of the art treatment available.

We didn’t purchase the HBOT for its skin benefits. In fact, I didn’t even know I’d be have skin immunity issues. They began with my new IL-17 inhibitor which I started in January We’d acquired the HBOT around the same time but I had no idea how challenging Bimzelx would be. It could have gone worse.

We had originally acquired the HBOT as several of our friends and acquaintances had succeeded in managing impressive inflammation rate reductions as well as progress with a slew of autoimmune issues from long COVID to mold toxicity. The kind of troubles we only test in fancy labs with extreme athletes or the enterprising technology brother.

My wound has mostly healed save a small lump, my V02 max has improved despite virtually no exercise (hard to do much cardiovascular exercise with an infection in your posterior chain) and I have overall found the balance of improvement in my energy and pain to be significant.

Thanks for noticing Whoop

If I could just get a month without a health crisis where I have enough energy to workout consistently I just might make some progress. So if I disappear for a bit that will be what I’m doing. Once I’ve got bloodwork I will share obviously.

Categories
Chronic Disease Internet Culture Reading

Day 1772 and No Signal

The volume of communication we receive digitally has risen to deafening levels. I’m shocked we aren’t all in a civilizational stupor muttering “mawp” like the cartoon secret agent Archer.

As we attempt to balance the barotrauma of the increasing volume of dings, pings, tings and Slack bings trying to reorient our attention towards them, the temptation is level the pressure explosively. Shut up!

The noise is bearing down on us relentlessly. Just when we think the pressure might equalized and we have adjusted to the din, a new chime will force a recalibration.

MAWP!

Our phones become dysbaric monsters. The ambient pressure disorder that is leveling your attention span to the cacophony of alerts and aggravated existential noise leaves us deaf, dumb and disoriented.

Different people cope with this in different ways. Many of my friends have committed email bankruptcy including me. Some people make big claims of having screen free homes. Others go to physical therapy or osteopathic craniosacral specialists for cervicalgia. Isn’t it nice to know your text neck is killing you even if the tinnitus and vertigo doesn’t get you first.

This is all to say that my Signal Mobile application inexplicably stopped working this morning and the silence is causing me some degree of anxiety. If I were a woman with fewer scruples I’d consider it disabling.

Alarmingly, because I’ve been forced to mute virtually every other channel of communication to avoid the noise, this means it’s been largely impossible to get work done.

Hopefully I find a solution soon. I rebooted my phone, cleared my cache and updated to the new iOS. Nothing works. I’m afraid that I’ll be losing the one channel that actually functions for me.

If not, you may very well not hear from me again. Twitter direct messages still work. If you are looking for me check the nearest ear, nose and throat specialist. If I can’t fix my ankylosis in my thoracic maybe I can improve my posture in the meantime. The worst case scenario will be installing WhatsApp but I’ve not given in to that nightmare scenario just yet. I’m running silent in my attention submarine but I’ll have to resurface at some point.

MAWP!