Tag: Disability

Categories
Culture Travel

Day 1871 and Private Terminals

The downside of living in a world where everyone posts all their luxuries, is regular people who spend too much time on Instagram worrying about things that wouldn’t add much to their lives. Instagram breeds discontentment for everyone.

My husband grew up ten minutes from a global international airport hub, and as such has unrealistic expectations of how quickly one can get from place A to B and how many legs a trip should have.

He longs for the most efficient trips complete with special passes, lines and hopefully a plane dedicated to just his crew and their final destination. I doubt I’ll manage to buy it for him but if one of my better seed investments pans out I’d acquire a gulfstream for his buddies to fly.

I’ll admit I’ve been a little spoiled as well, as by the time my family could afford to fly more regularly the old Stapleton airport had been replaced by a global United hub in Denver International Airport. A spookier more haunted airport there has never been (mind the killer blue Mustang and Masonic symbolism) but it flys connections everywhere.

Now we are in the spokes and farther from hubs. Flying can be a challenge for me as in the past fewer people abused disability requests like wheelchairs.

My ankylosing spondylitis has good days and bad days so on occasion I wish I had help with heavy bags, long lines and lugging stuff around.

Wheelchair access has alas become just another scam people run to board first, so I can no longer guarantee that I’ll even make my airplane given the lines and lines of maybe crippled as if you log disabled you often can’t even get your boarding pass from a kiosk. You have doomed yourself to the thousand person line.

Alas become used to popping Advil, throwing elbows and working my way to the front of the line filled with folks who know little of flying etiquette, status boarding times and the rest. If I can’t beat back a Balkan auntie seated in the back of the plane for my own seat at 2C then what sort of world traveler am I? I claim space but I don’t like it.

Yet as I stomp around smaller spoke airports I’ve learned it’s not too expensive to get a priority pass to private terminals. Groan I know.

In a few spots, it’s less than fifty bucks to skip check in with your airline, avoid security and passport checks with the whole airport by doing it in these terminals and they will drive you in a van to board the airplane first.

That means no more fighting for prime position in line to get prime position to board to get prime position on the bus to race up the staircase to the airplane before someone else blocks you.

I can’t imagine a better use of the time and money frankly. I could easily have arrived much later but I wasn’t sure how easy it would or wouldn’t be.

The demographic feels a bit petty oligarch with a cigar lounge and exotic alcohol but I’m just happy I haven’t had to do any heavy lifting for the moment. My bags are handled. I have food and water.

Categories
Travel

Day 1870 and Cutting Down On Packing Time

I am a very thorough, well honed and time tested, and Karen hardened packing methodology.

I have a little bit of childhood anxiety around packing for having moved around a lot that has alas never left me. Many people having anxiety about flying so at least it is a bit relatable but I don’t know if packing anxiety is as common.

For me it’s not about being in the air but rather leaving behind an established base for parts unknown. Will I be able to find medicine for issue that arise or soap that won’t trigger eczema? What if I need to appear at an event requiring a dress & makeup? What if I need to walk for two miles with all those things?

Every time I pack I go through the same routine and I use the same bags with the same labeling system to manage all the permutations I might encounter. And it is a science.

I have a small pajama bag I carry in my backpack in case of an unexpected overnight or long delay. I carry small clear vanity case to clean & groom myself with full allergy protocols that passes even the crankiest Heathrow checkpoint. I am prepared.

I carry on my person a a small pill bag with every detail labeled that can handled medical incidents big and small along with my first responder certificate. If you have an issue on an airplane you want to be seated next to me.

From there in my carry on suitcase I label the packing cubes with every item I bring, from underwear to wrap dress and ballet flats. Everything that is packed in my larger Tumi that gets checked is also labeled and I place an itinerary on top as I find my bags opened more frequently than seems reasonable.

There are no questions from the TSA or the most belligerent customs agent that won’t be immediately cleared up with minor inspection. Now with artificial intelligence I can translate my labels on the fly into any language.

Despite this clarity and organization, I admit I’ve had a few amusing incidents. Once through Heathrow I unsettled a British Airways agent with my fiber and protein powder baggies. Because clearly middle aged woman would smuggle in a quart sized baggie of cocaine in her purse.

I really wish with all the travel I do and my very strict system that this would all somehow take a little bit less time than it does. I generally allow myself two days to pack as I like to check and double check as it’s an iron law that things will be forgotten. And Montana is remote enough that if I forget a fancy serum or a favored sweater I won’t get a replacement easily. We only just got a Sephora this year.

I am however headed for a large American city that has absolutely everything I could possibly want in short order. So as I leave behind a European home base where I do keep things on hand (I didn’t always but extended family has been kind to me) I feel much less pressure this time. And still somehow I will allow myself to let it take more time than I’d prefer.

Categories
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.