Tag: Disability

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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.

Categories
Biohacking Medical Travel

Day 1856 and Always Something So Always Trying Something

The world is a topsy turvy place and I am doing my best to meet it head on. Physically I’ve managed a surprisingly steady period from December through January, even though I spent a decent portion of that on the road.

I credit this mostly to using antibiotic and anti-fungal regimens prophylactically. The biologic immune suppressant I currently take for my ankylosing spondylitis is quite frankly too good at its job. And I’ve tried quite a few.

That means I am locked in a battle of constant vigilance in order to keep my inflammation numbers down while also not becoming a host to bacterial, fungal or other infections. It’s a balance that is anything but delicate.

In 2025 I had been unable to fight off skin, soft tissue and mucosal infections seemingly at all. Even with extensive protocols for decolonization (intranasal mupirocin, chlorhexidine washes, environmental decontamination) I had four major infections.

Of those infections, three required surgery and the fourth was the result of a very minor incision to insert testosterone and estradiol pellets. Those surgical interventions proved very trying and also very expensive.

The last one (testosterone) helped quite a bit with energy but being energetic doesn’t matter much if you can’t fight off infections.

So while I know there is an individual and social long‑term systemic risk in using antibiotic prophylaxis, I will say it does seem to be helpful in mediating say outbursts of allergens flaring into soft tissue infections from skin breakage or having exposure to molds and fungal growths that fester in old damp buildings and water systems creep their way into any opening available.

Since it is always something, I figure I need to always be trying something. Frankly I am over the push and pull of managing medical care in America. It’s a mess and mostly designed at risk mitigation for the health systems.

I have found going abroad to be much more useful and cost effective in many cases. I may even find that it would be useful to document the experience in a format beyond a blog as I doubt I’m the only person manage complex chronic disease.

Categories
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.

Categories
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
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.

Categories
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