Tag: Disability

Categories
Chronicle Travel

Day 1827 and Year 6 of Daily Writing Begins

I didn’t feel like writing yesterday. That’s a weird way to start a commitment to a sixth year of writing every single day in public on this blog. I do intend to keep writing daily.

Maybe I should restart. My life was so full on the last day of the year, that the writing I had intended on doing on the last day of year five I simply couldn’t do. I fell asleep. It’s alright I had a beautiful synopsis of the emotions of the experience even if the links didn’t get passed may.

I felt the urge to sleep come on so strongly I wrapped up with a few “oh that happened too” sentences and I was out. Poof! Exhausted. Thankfully fireworks woke me up at midnight so I could ring in the new year.

I was midway into May doing a “best of” round up review by hand when that sudden “consciousness loss is imminent” feeling hit me. I’ve been driving the Dinaric Alps on an adventure that ended up in Sarajevo. I am sure I’ll write about the experience soon.

But now I have a meal and some unpacking to do. My 2026 is off to an interesting start. I’ve crossed three borders today. You can see how I might be tired.

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Aesthetics Culture Medical Startups Travel

Day 1826 and Some Best of 2025 Selections

Yesterday I wrote about the experience of my daily writing experiment rounding out its fifth year. It’s been a fun and often emotional journey that I find hard to fully capture. But I’ll attempt to list a few of my favorite posts of 2025 on the last day of year.

Healthcare and Biohacking

Day 1490 and Healthcare’s Sin Eaters

Day 1468 Deciding to Go HBOT and Starting HBOT

1567 and Turkish Medical Tourism

1565 and Elephant’s Eye

1560 and Getting an HBOT

Day 1517 and Blink Blink (First Incision of 4 Scalpel Incidents in 2025

Day 1503 and Managing Healthcare Projects from Mold to Hyperbarics

Startups

Day 1486 and Is There A Tech Right

Day 1510 and Turning Valar On

Day 1542 and Future Blind

Day 1572 and Reskilling

Media

Day 1485 and A New Pogue at The New York Times

Day 1581 and Lecturing at UC Boulder on Renegade Futurism

Day 1569 and the sky above the port tuned to a dead channel

Day 1496 and Maneuver Warfare

Politics

Day 1484 and Montana’s Right to Compute Bill

Day 1549 and Productive Primates

Day 1578 and Dark Start or Energy Realism

Day 1576 and a NatCon Boomer Kicks a Townie Millennial Out of Their Hometown

Trends, Cultural and the Academy

Day 1484 and Zoomer Identity Violence Trend

Day 1479 and Liminal Industrial Transport in an Empty Frankfurt International Terminal Pod Hotel

Day 1580 and Learning By Doing or Embodied Learning for Humans

Day 1575 and Renegade Futurism

Day 1555 and Modern Machiavelli

And I got to about May and realized I didn’t feel like I needed to put more into the organization. I had 4 medical procedures involving surgery. My father died. My best startups all raised rounds to scale. You can find your own way from there. It’s been a hard year despite the wins.

Categories
Culture Emotional Work

Day 1819 and So You’re Safe Enough To Celebrate With Rest

I prefer Christmas Eve to Christmas Day. What traditions my family had were mostly oriented around the night before Christmas and not Christmas Day itself.

We’d have a Christmas Eve dinner, our one item per person gift exchange, and most excitingly staying up for midnight mass with my mother

Christmas Day meant Christmas stockings and a jumble of different half heartedly attempted Christmas wishes and lots of long distance calls. Much less fun from a child’s perspective than gifts and late night ceremony.

So here I am on Christmas Eve all prepared for tomorrow’s day of stillness and rest. And I am exhausted. My body has sensed it’s safe to collapse into the kind of sickness that only comes after cortisol washes away on the tides of adrenaline going out to sea.

I’ve got not plans. My worship has never required a church. My prayers are between myself and my maker. I’ll be sick and happily collapsed into my own quiet reflection. May peace be with you.

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.

Categories
Preparedness Travel

Day 1815 and Preparing for a Closed World

It’s unusual for stores and restaurants in America to close for a holiday. We’ve got rare cases like Chick-fil-A which observes the Sunday sabbath.

America don’t have national day of rest every Sunday like say Germany does. We have shift work and many faiths and nationalities so the days and hours off depend entirely on who you are and how you work.

Maybe it’s a woman thing but knowing a a day of rest in which the whole world comes to a stop always seems to mean an extra day of work. We must prepare for a closed world.

I’ll do loads of laundry, clean the house, do all remaining errands & shopping, and attend to the fuel knowing that if everyone is off then I must be particularly on. I’ll tap into my inner prepper and double down on my to-do list just as I do before storms.

Especially given my variable (occasionally fragile) health if I am to survive things being shut comfortably I need to put on my best Boy Scout act. Be prepared. I don’t care to pile on additional risk if I can mitigate it with a bit of work.

I used always shower before a storm just in case the water and power go out. Sadly I’ve lived through major disasters like Hurricane Sandy and Boulder’s devastating prairie fire. Nothing helps you maintain optimism in a bad situation like being in clean.

I’m thinking ahead to being somewhere a little remote for Christmas, where it’s unlikely that restaurants, gas stations or grocery stores will be open for the season let alone Christmas.

About the only thing within driving distance that will surely remain open is a monastery. Maybe if my preparations go well I can make a trip to visit with an offering to whoever else might come to worship in the far wilds.

Categories
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
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

Day 1804 and 5 Years of Whoop

Tis the season of “unwrapped” data round ups as technology companies owe remind us that they have very capable data teams without unnecessarily freaking out users.

The marketers get all the glory, as everyone figures it’s a few MySQL queries gussied up with a creative hook but I always wonder what happened to the great data and behavioral science fad of the early teens. We’ve moved beyond IFTT and Zapier into natural language vibe coding. It’s a time of incredible change in understanding the data we’ve lived inside for years.

I got my fifth year of Whoop end of year marketing when I woke up today. Which was a little annoying as I wanted to see my sleep from last night but who wants to rush through the end of year review right? Finding it again can be tricky.

I keep wondering what more can we get from the hardware that knows us best. I’ve given half a decade to Whoop and mostly what I’ve learned is Covid really took 20 points of my heart rate variability.

I’ve been frustrated of Whoop’s progress in the integration of a chat AI as it seemed like any commercial LLM could analyze screen shots of the Whoop as well as their own chat did with the data it already. But tenure counts for a lot and it’s still the tool we have all relied on for half a decade now. Or at least 2% of us have worn it everyday for that long.

Clearly the data l could be used in many more way more than the management team ever seems to enable their data teams to do regularly. And I’d like to get more out of my Whoop. So being reminded of the length of use makes me wish they would deliver on that future before another year goes by.

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.

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!