Tag: Disability

Categories
Aesthetics

Day 1604 and First Weekend of the Season

It is so beautiful today in Bozeman it almost doesn’t feel real. It’s warm but not hot. It’s sunny but we have fluffy clouds breaking up intensity. Cool breezes waft in and out without ever really turning to wind. I hope our entire summer has this weather.

Because of the holiday weekend the town has fully switched into “seasonal” mode from daily New York flights to way more availability at restaurants and service. One of Alex’s friends from college is headed into Yellowstone with his whole family from grandparents to kids.

Mountain towns make as much money in the summer as they do in the winter so you always wish for fluffy snow and cool clear summers.

The snowpack is smelting, the grass is green and the sky is oh so blue

While Yellowstone is worth the travel, I appreciate being able to work and hike all flavors of public trails from city to state in Bozeman.

On days like today I want to fully throw myself into a Bryan Johnson super adherence biohacker as I want to be able to enjoy as much of our summer as I can outside.

Categories
Chronic Disease

Day 1599 and Sadly Cold

I would love to have something to say today. I have a migraine. My circulation seems odd. I’ve got on 2 pairs of wool socks on, two layers on top and I’m underneath two down blanks. And I’m still cold.

Complaining about one’s body is such an unappealing habit and yet when the pain comes for your attention it has the gravity of a black hole.

I don’t want to be a bore. I fear every time I am trapped in a bad bodily cycle I am boring myself and others. It’s been six years since I was diagnosed with an autoimmune condition and so much of it has been chronicled here.

And yet no matter how much I throw at health and wellness I still find myself cold, sad, hurting and without any kind of cure.

Categories
Biohacking Chronic Disease

Day 1598 and Routine in Chaos

I have been contemplating “an ideal routine” as soon as I felt the pressure of showing up for first grade. How to manage the energy the outside world requires from you while making sure you have done everything possible to manage your body to produce adequate energy.

Morning routines, what’s in her bag, every day carry, and optimal packing strategies all derive from a need to see how others are coping with the demands of life. You can aspire to various ideals of fitness, nutrition, style and parenting if you could just get the right routine with the right tools. Right?

I’m aspiring to restart learning new toolsets for building …everything. From design to marketing software to muscles to my hormonal profile. Building the life you want is deceptively close if you can manage yourself.

Life feels malleable at the moment. And who is going to stop me? Maybe I accidentally fix a problem for myself and find I’ve got a tool or insight that might benefit you. The chaos of old ways fall apart means new routines and folkways must be built.

I don’t want to betray myself by overreaching and pushing as I am so often finding hard limits the hard way. I like to go hard and rest. But reality has become so much less reliable that I wonder if I must compensate even more for the chaos with steadying flows of my own.

Categories
Chronic Disease

Day 1594 and The Creek Don’t Rise

I’m not sure where my mother picked up the slang “God willing and the creek don’t rise” but I had it regularly to suggest a thing shall come to pass a “if nature and God” are willing.

It’s it’s got a hint of Appalachia in its origin story and then tumbles over into a Johnny Cash cover of a Jerry Reed country tune (probably where my mother learned it as she loves Cash) before settling into a Spike Lee documentary about the water engineering challenges that have brought such misery to New Orleans.

It’s been pouring in Gallatin County all day. Our already high rivers are looking like they may cause troubles. Friends who fish were concerned the muddy headwaters weeks ago when I was caught in other unexpected spring showers in Colorado.

I am afraid the moisture is kicking up mold in our house. We’ve spent months remediating the problem so it weighs on me to consider the possibility. I woke up covered in hives and eczema.

I took antibiotics and Benadryl and it kept getting worse. I showered with nothing but unscented Castile soap hoping to mitigate the outbreak. That did more.

I have an event I’d like to attend this evening along with a houseguest who I very enjoy much enjoy so it frustrates me when the creek sees fit to rise against the banks that contain the river of my life.

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.