Tag: Disability

Categories
Biohacking Medical Travel

Day 1567 and Turkish Health Tourism

I had not planned it this way but I had a repeat of the meiborn gland issue that got me sent to hospital in February. I had, in just four short days, a chalazion turn into hordeolum aka an infected cyst.

It’s probably a side effect of the IL-17 biological I am using. I had a mold exposure over the winter in our bed room so who knows. Sucks to be me. This is why I’m excited about new technology for healing like HBOT.

It needed a doctor to perform an incision and curettage. I asked the concierge at my hotel for a clinic and I walked five minutes to an enormous glittering skyscraper of a hospital. Many of those hospitals are run twenty four hours a day.

I walk in with no appointment. They immediately find me a medical translator. I’m checked in within fifteen minutes. I get a full eye exam and a seen by a doctor who instantly diagnoses it.

Next thing I know I’m in the chair with a local anesthetic and she is slicing, draining and disinfecting. She gets me my post treatment protocol. A pharmacy delivers the prescriptions in 9 minutes. Now this is healthcare.

Within the space of an hour I’m fixed up and sent home to eat. I’m sitting down to grilled octopus and prawns by the Bosporus in no time. I needed a protein filled lunch to take my antibiotics.

Categories
Biohacking Chronic Disease

Day 1566 and Oxygenated

I am buzzing with energy as I spent my day touring the factory a hyperbaric chamber factory. I don’t want to get ahead of sharing details I haven’t cleared with them but I learned so much.

Istanbul is so far ahead on medical care delivery it is genuinely thrilling. There are 24 hour walk in hospitals. And

Which is good as the new IL17 inhibitor means to have a side effect of meiborn gland problems. In mere days I got another chalazion so I’d like that sliced out.

But my optimism about my immune systems capacity to operate functionally has taken a step towards optimism. That something so simple as oxygen and pressure has such significant benefits for our bodies is common sense.

How marvelous that the ingenuity of divers, doctors, athletes and under water workers to put together a treatment that is so effective it moved the biometrics of one of the healthiest men alive.

That only in the age of artificial intelligence did we get the inference capacity to show its efficacy is a real indictment of our academic and medical bureaucracy.

Categories
Biohacking Medical

1560 and Signs to Act

I’ve been holding myself a bit back from the world as I’ve been trying to take care of myself and lay low. Too much system input and a spate of bad luck (housing and health issues) made for a bumpy time.

So while I’ve been steadily attempting to stay online for some information flow my epistemic hygiene has mostly consisted of “staying offline” and working through routines that provide positive feedback loops.

I’ve been keenly interested in hyperbaric chamber oxygen therapy from both my very effective first set of treatments and the experiences I’ve seen in my own social circle. Everyone from local Bozeman friends (mostly men) working through injuries and chronic issues to tech’s favorite health billionaire Bryan Johnson have shared their enthusiasm for the therapy. It quite frankly just works.

We’ve acquired one (and am researching another provider that Bryan himself owns) as I’m exploring businesses that would allow us to bring them to Montana. Step one will be letting our friends come use ours in the barn! S

tep 100? Maybe MilFred Industries ends up with a wellness brand. I’ve certainly got extensive experience in every adjacent category from fitness (Equinox) to branded wellness (Goop) and direct to consumer cosmetics (Stowaway) so anything is possible.

Categories
Chronic Disease Medical

Day 1552 and Mold Updates

Over the winter we did a mold test on our bedroom after I had had a batch of sub-optimal bloodwork and flares in my autoimmune condition. We wanted to be thorough in assessing potential reasons for any issues from environmental to pharmaceutical.

I was suspicious that mold would be a culprit. Or perhaps I did not want it to be a culprit. Mold has always seemed like an excuse the professionally sick lean on like a crutch. You can imagine some worried well Goop reading white woman blaming mold.

I don’t know if this is engrained ableism on my part (lol) but no one wants to be that annoying sick woman with the litany of vague issues plaguing her life. And yes I fear this about myself because I do have to manage an autoimmune condition.

So I went into mold testing with some cynicism. It’s mike making a claim you’ve got a diagnosis of fibromyalgia. Sure both mold and fibromyalgia are real but I’ve learned from experience that you must avoid both lest you be seen as someone unserious.

The wall next to bed.

Alas it has turned out to be serious. It took most of the winter to work through the breaking down the walls part but once Alex began pulling back the walls it was dramatic and easy to spot.

The bedroom getting ripped apartment.

As it turns out the wall on my side of the bed has quite a bit of mold types growing happily. As best we can tell it must be some type of small leak in the pipes.

Gnarly white spores

There’s a couple hydronic heater pipes right by the baseboards so the current theory is maybe one developed a tiny pinhole leak for a bit that sealed itself back up. Don’t ask me about that one as it’s on Alex.

His plan for now is to remediate it, patch things back up, fog the room and have the carpets steam cleaned. Which is a bigger job than we might like but much better than it could have been.

Categories
Biohacking Chronic Disease

Day 1536 and Backward to Move Forward

Much as the winter has been hard on everyone in my close circle, I don’t particularly want spring to arrive. I’d rather have a pleasant winter follow the unpleasant one instead.

I woke up to fresh snowfall this morning after a hard night. Some previous stressor is making my hair shed. Pain has wrapped itself tightly around my intercostal as it radiates from my thoracic spine. I feel as if I’m fighting a light infection as I ran a fever yesterday and today.

I only have a few days till my next loading dose of my new biologic drug Bimzelx which is a new type of IL-17 inhibitor for my ankylosing spondylitis and psoriatic arthritis. Bimzelx targets both IL-17A and IL-17F, while my previous protocol Cosentyx targets only IL-17A.

Changing medications is a whole thing that introduces way more unexpected problems even with the best of planning. See for instance getting my eyelid sliced open twice to manage an infection. Neat right?

Oh and don’t forget the mold issue. Figuring a solution to our master bedroom and downstairs mold issues means we’ve got some destruction and renovation that we probably can’t accomplish before the summer.

Which is a bit of a bummer as our guest floor isn’t as well air conditioned. Add in the late evening light and I expect the next two seasons will be challenging to make progress during. But sometimes you have to go backwards to fix existing problems in order to move forward.

Categories
Startups

Day 1521 and Reconsidering

I’ve been rereading the work of my internet friends Luke Burgis recently. His hugely influential book Wanting: The Power of Mimetic Desire in Everyday Life introduced popular culture to philosopher Rene Girard. 

I’d first encountered Girard at university and through Peter Thiel’s influence pursued further understanding of the work thanks to Luke’s scholarship on the topic. A quick orientation on the thesis is as follows. 

What Gravity Is To Physics, Mimetic Desire Is To Psychology”

I’ve found Luke’s thoughts on topics like existential safety and mimetic collapse to be regularly illuminating and would recommend reading his newsletter.

I am reconsidering some of the mimetics that are driving my life. We’ve had some amazing startup investments. I’ve been able to move policy issues into law. And I do it all with the added weight of chronic health issues.

It brings me joy to help the next generation of founders. It’s as close as I’ve come to a deep desire. I do it believe I love it.

I also have an idea of how it should look. The formality of funds and institutional investors has been the default way things are done in startups. I’ve never been too concerned with prestige but I have some attachments to what it should look like.

The irony being startups and the venture business are all about the big hit. There is no right way of achieving them as playbooks get rewritten every time we have a new technology.

So I wonder why I want things to look any way at all when the ultimate objective is to achieve a type of performance that is already emerging. Am I stuck wanting only because I want to mimic others? It seems possible.

That realization makes me want to let go of any preconceived notions of structure or aesthetic and to simply commit to my own process and how I find outliers.

Categories
Chronic Disease Media

Day 1509 and Wrapping My Arms Around The Problem

I am seeing some progress in my various home and health projects. I’ve been doing my best to remain optimistic even though I was not feeling well and the sheer amount of changes required was intimidating. But I’m seeing low progress.

An industrial hygienist is coming to do an arm test tomorrow on our basement as well as the rest of the house to confirm the extent of our mold problems. Our hope is that it’s contained to the bathroom in the basement.

If we have to do a bathroom remediation that presents an opportunity to do some renovations. While exciting that is also introducing more risk. But you can’t waste a crisis right?

Stuff I Read

The Agent Problem

CoinDesk reporting on the Libra scandal in Argentina

Politico: Voters Were Right About The Economy

Epsilon Theory “It Was Never Going to Be Me”

Categories
Chronic Disease Emotional Work

Day 1508 and Dorymaxxing

I am pushing myself to continue with the daily writing habit even as I am on a rollercoaster of health and home challenges that have put me well on the back foot.

I want to rage against the symptoms, the system that can’t solve anything, and even my own body for being tricky. But that won’t fix anything. I’m need to give the new protocols the space to work.

So it’s one foot in front of the other. Whatever is happening out there in the real world I just need to put one foot in front of the other. Or if you prefer a meme. Just keep swimming Dory.

Just keep swimming

I’m doing my best not to get it get me down. I’m afraid of the setbacks. I am afraid of the length of recovery and the potential for things to be worse. But I’ll Dorymaxx. It’s all I’ve got in me

Categories
Chronic Disease Emotional Work

Day 1506 and Breaking With Convention

I am in a challenging spot at the moment with our household mold issue and my attempts to accelerate changes in my care protocol for my autoimmune condition.

When things are challenging physically I find myself in tension. I want to share and be open in my experiment to write every single day. I am afraid that I’m doing nothing but share weakness by doing so.

I don’t want to telegraph only strain, illness, and struggle. Sure things are hard at the moment, but I am more than my current local minima conditions. Things are quite good.

Just because I feel too weak to articulate all the areas of strength doesn’t mean they don’t exist. I just can’t put them front and center right now.

This frustrates and even angers me. Large long term projects and investments are thriving and rather than focus on those I am curling into the fetal position and wishing I could disappear until I’m able to advocate loudly and proudly for my wins.

Categories
Biohacking

Day 1503 and Project Managed Health

You have to work the problem in front of you. Fixating on past problems or potential future problems does not fix the problem in front of you.

Bottlenecks are such a useful construct as most humans have experienced their all of their progress being stymied by one single obstacle. Be it a fallen tree in the road, a bureaucracy or a health problem, the bottleneck stops you.

Alas I find myself with multiple health projects that have to be project managed with timelines, budgets, and externalities on each other.

We’d been planning to start a new care protocol with an updated biologic but the discovery of mold in the master bathroom is a bottleneck.

We need to decide if starting new immune suppressants is safe in the house before remediation. Mycotoxins at a load marked as unsafe for autoimmune conditions makes me nervous.

Sure we are staying upstairs but is it removed enough to be a sensible move? Can we isolate me and begin treatment? Do we wait the multiple weeks remediation will take? How an we run parallel paths. It’s crazy to project manage one’s personal life like this but it’s also necessary.

This excitement has also slowed down movement on acquiring a hyperbaric chamber. I’d love to offer it as a service locally as there isn’t a single available one for off label use in the entire state.

I really do think this would feel unmanageable if we didn’t have new tools at our disposable. In particular the new ChatGPT’s Deep Research has made it much easier to find different bits of information to reach an actionable conclusion. Because I want to clear these blockers.