Category: Chronic Disease

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Chronic Disease

Day 1863 and Head Above Water

Yesterday I wrote that I had no gas in the tank. Today is not much better. I am barely keeping my head above the proverbial water line. I finished a major purchase which I thought would give me respite for a few days.

Alas changes in destination, an emergency dental appointment for a family member, and the promise of rest was more like a promise of fretful semi-consciousness.

After days of rushing around seem to have swept me off my feet and into bed I still am not quite rested.

I thought I was mended yesterday but it seems as if I’m on the second day of exaggerated sleeping patterns with long arcs of sleep in the wrong places and times. Add in a bit of overheating on top of it and something feels off.

It’s not unusual for me to absorb major changes and shifts throughout their unfolding via some migraine induced osmotic pressure. I feel the animal spirits and global vibes push in past my physical limits and I shut down. I hope I’ll reboot soon.

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Chronic Disease Travel

Day 1862 and No Gas in The Tank

I am very fatigued today so I’ll excuse myself to get on with it. I have had a few eccentric missions and side quests keeping me quick as we all adjust to whatever this strange moment in the world might be.

I haven’t had too steady a course of sleep thanks to some of the overflow on this terse intersections with reality. A few of them are fun but we’d probably all agree it’s weird out there.

So I found myself taking a nap as I had a bit of a sleep deficit. Now I realize I could do well with a lot more sleep. So I’ll see myself out. The the lights off if you are the last one out.

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Chronic Disease Emotional Work Travel

Day 1841 and Lapping It Up

As we do our yearly family planning retreat (such as startup couple cliche) I’ve been balancing the stress of the wider chaos of the moment and my body’s turmoil.

It’s contrasted with the calm and removed relaxation of a hotel with excellent hospitality. The soft attention to detail is a blessing on a body that is not quite up to factory standards.

As we go over goals, budgets, allocations and timelines the stress is buffered by being able to take breaks to walk alongside the waterfront or swim laps in the quiet infinity pool.

That might not seem like a triumph, if you don’t know me it sounds like a stupid humble brag about my very fine life. But I’ve spent years unable to wear a bathing suit at all because of the pain cause by Lycra’s pressure on inflamed tendons and tissues. Three years ago I wrote about the bathing suit I’d never work

And today I was able to dive in and do the butterfly and the backstroke as if it were the kind of workout I do all the time. The possibility of improvement is here.

One of the planning goals is to see how far we can take my health with nutrition, sleep, physical therapy and other modalities that rely on movement and self healing over the many intense drugs I’ve needed to calm the flares. I almost believe it’s possible. And I sure plan to try.

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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.

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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

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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?

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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.

Categories
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.