Category: Chronic Disease

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Chronic Disease Emotional Work

Day 1589 and Disagreeable

I am in a lot of physical pain and I have been cranky about it all day. I just did not have the energy to self censor my discomfort either. I spent a lot of the day in bed popping off.

Because people are polite I only ever get rewarded for being spicy. I’m sure people harbor all kinds of uncharitable opinions about people who are mouthy, especially women. But I mostly find you can say quite a lot. Especially with your ingroup.

In fact being disagreeable is tolerated, and even celebrated, in almost all public forums. Hard truths, straight acts, unpleasant realities tend to be celebrated. Truth telling can become someone’s persona even when nothing is wrong.

But watch out for that dark path. If you care too much about broader opinions of yourself you can easily become what is called audience captured in which your persona gets adapted to what gets a response. Modeling your life as get it can go very wrong for people.

I felt for comedian John Mulaney who got typecast as the affable guy and absolutely hated being the bad guy for his various addictions and personal life complications.

In his special “Baby J,” Mulaney reflects on the burden of his public persona: “Likeability is jaaaaaaaail,” summary via Perplexity of a much better substack piece

In some ways, playing to type is just cognitively easier for everyone. A social contract if you will. Being able to show more than one side of yourself shouldn’t be shrugged off as people pleasing nor is being disagreeable always a sign of bad temperament. Humans contain multitudes even if everyone plays to type.

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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.

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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.

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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.

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Biohacking Chronic Disease

Day 1535 and Telogen Effluvium

In what has become a real persistent mood this winter, I have another dumb problem. I am losing my hair. Literally.

As it turns out stress can trigger hair into mistakenly going into what is called a rest phase. Perplexity tells me this is a temporary condition where significant stress pushes large numbers of hair follicles into a resting phase, causing shedding within weeks to months.

I have a lot of hair so it’s only really noticeable to me but I am tired of unexpected problems this winter. Obviously I have been under some stress and it feels like punishment.

Thankfully virtually all people diagnosed with it recover once the underlying stress has passed. It’s commonly associated with giving birth but it seems any significant or stressful event can trigger it.

Hair regrowth typically begins within 3–6 months. In most cases, up to 95% of acute TE resolves completely without long-term effects on hair density.

My vanity is pleased this temporary. I can certainly take it easy and pull back from unnecessary stress. Plus it’s a great reason to overspend at Sephora on new haircare. There is a bright side to everything.

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Chronic Disease Startups

Day 1519 and Steady

I am doing my best to remain steady. The world at large doesn’t make it easy. Every day we have a new crisis, impending doom and looming fascism.

I would be more inclined to reactivity if it didn’t seem much more important to pay attention to the actual problems over which I have some agency.

Some days that agency is used on frustratingly small things and others it’s the most fantastical science fiction come to life in our day to day reality. The indignities of human embodiment and the miracles of applying knowledge to problems exist in the same reality.

There is so much pretending and posturing in the process of pursuing any goal, it’s understandable that people mistake the symbols of things for the thing itself.

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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”

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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

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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.

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Chronic Disease Emotional Work

Day 1504 and Dead of Winter

For as exciting as the last few weeks have been it’s hard to feel like as it’s the dead of winter. I’ve not gone outside in several days as we are in -20 land which probably contributes to fatigue. Thankfully it’s bright and sunny.

I don’t have anything useful to say as being in the middle of multiple health projects is a time suck. Any excess energy goes to work as there really is no way of stopping progress. I wish I could keep up as it’s exciting.

Partially because things are so “out of bounds” I can feel more comfortable prioritizing long term gains and changes. I think I can achieve a health level up and fixing it now prepares me for strain later.

I take this approach on everything now. The short term has been set by decisions in the past and the medium term is highly uncertain. Steer correctly now so future you is set up to succeed.