Tag: Disability

Categories
Chronic Disease Medical

Day 1896 and Short but Sweet

The weather forecast for western Montana for the next several days is gusty high winds and five feet of snow in the high country so I suspect I’ll have some good down time simply because there’s a chance I won’t even be able to go outside.

I have a dentist’s appointment tomorrow morning, first thing, which I am a little nervous about as I’m not accustomed to having issues with my teeth.

The work I got done a week ago kicked up quite a bit of dust, if you will, and now I am struggling with a high heart rate and a very low heart rate variability. I can’t seem to improve upon the numbers.

If the dentist doesn’t spot anything wrong, then hopefully I can simply get a prescription for fluoride toothpaste and head to my family doctor as long as the weather holds.

I wish I had more to say but the energy I had budgeted for the day has been all used up. I’m not even confident I have the strength to focus on television with a plot line. It is a challenging prospect for me to stay upbeat when I get beaten down by my own body but it’s all I can do and I’ll have to accept it.

Categories
Biohacking Medical

Day 1890 and It Bears Repeating Or Does It?

I can’t say I have fully recovered from pushing myself to my operational limits to do work (which looks a lot like socializing in my line of work) while still recovering from an infection after dental work.

It’s always recovering from an infection these days. I’ve been on some kind of antibiotic or anti-fungal every day since October.

2025 for me was getting an infection and then recovering from an infection on repeat. Ever since I decided to swap my biological injection 15 months ago from Coesyntx to Bimzelx and I think I’ve hit my limit.

It’s just too damn depressing that it’s a constant threat that I’ll have either a soft tissue infection or an abscess or a swollen gland that turns into a staphylococcus colony.

It’s as if I’ve got no skin biome left which is almost certainly true. I think I’d rather have CRP and sed rates and risk other infections than be rotating antibiotic varietals like some kind of junky afraid to develop a dependency.

Except instead of pain pills or lady downers it’s amoxicillin versus doxycycline versus Cipro with the occasional dalliance with a macrolide. I’ve also come to appreciate the benefits of Fluconzole. It’s not great. If you want a quick AI generated overview scan along

  • Beta-lactams: This broad group includes penicillins (e.g., amoxicillin), cephalosporins (e.g., cephalexin), and carbapenems (e.g., meropenem). They work by inhibiting cell wall synthesis.
  • Macrolides: (e.g., azithromycin, erythromycin) These inhibit protein synthesis and are often used for respiratory infections.
  • Tetracyclines: (e.g., doxycycline) Used for a wide range of infections, they inhibit protein synthesis.
  • Fluoroquinolones: (e.g., ciprofloxacin, levofloxacin) Broad-spectrum antibiotics that inhibit DNA synthesis.

My problem is that going back to my old biologic will take three to four months to full dose and it’s not a risk free process. And my full biometric panel is better on Bimzelx so is it really so bad that my resting heart rate is in the upper nineties every other week?

I think it may be time for me to make a pilgrims to the remaining clinics and pretend that I have any remaining institutional trust. Maybe I can vibe code something usual along the way.

I intend to support others on this journey as I’ve been chronically this journey a long time and the times are changing as we bring more artificial intelligence to the inference issues around our biometrics.

Categories
Chronic Disease Startups

Day 1889 and Recovering from Normalcy

I had such a lovely day touching grass (and sand) yesterday. I slowly worked through a 36-48 hours of of talking, walking, strategizing and occasionally reapplying sunscreen (I still got burned a little on my shoulders) with a friend who is preparing for big life and company changes.

These are the activities of normal life that I cherish, but my body seems hardly able to manage the strain this week. Now perhaps these activities are stressful on the mind and soul, but should they really be so physiologically taxing for me?

My Whoop is showing high strain

Now yes I am recovering from some dental work and on antibiotics but shouldn’t I be able to have a calm day that most would consider restorative? The serene peace of sitting on sandy shores should surely outweigh any areas from consequential questions of power, compute, realism and human purpose right?

I have barely been able to get out of bed today and the ten minutes of squats and planks I did to test my capacity spiked my heart rate into the stratosphere.

Which is odd as I woke up with my RHR in the 60s which is much better than usual. I only get into the 60s or 70s consistently when I am on heavy antibiotics.

The two weeks I was on Cipro recovering from surgery this summer my RHR was in the mid sixties so clearly I’ve got something going on with low grade infections.

I struggled mightily to organize my thoughts enough to write even this post. I feel I might even have it in me to go for a walk. Which is encouraging as I missed the sunset. The sunsets are obviously an event when you have a beach or far off horizon to enjoy with then.

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.