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 that one is in 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
Aesthetics Medical

Day 1547 and Fragrance Free

Going to a spa or a hair appointment has an added layer of stress when you’ve got skin allergies.

I don’t need clean or organic beauty (though I do prefer it). It’s not about being fancy so much as I need it to be free of synthetic fragrances like Limonene.

Limonene is a naturally occurring, colorless liquid terpene hydrocarbon (C10H16) found in citrus fruits and other plants, known for its citrus scent and used as a flavoring agent, solvent, and in various products like cleaning products, cosmetics, and supplements

Somehow I became allergic over the years to a number of fragrances both natural and synthetic. A clean beauty list of “no no”ingredients has become common as everyone from Sephora’s to BeautyPie agreed on things like keeping products free of paraben, sulphate and Methylisothiazol.

It’s a little harder to justify not including citrus or lavender unless you are trying to cater to the most sensitive skin. Both are quite popular for all kinds of personal care. I have to be careful of almost all soaps.

Some of my interest in preparedness (and in travel size cosmetics) surely comes from having to carry around basics from shampoo to shea butter. It’s a pain to have to consider but also a pleasure to always be prepared for any scenario.

Categories
Medical Politics

Day 1544 and Ownership

Americans are big fans of private property; or so our reputation says. But we’ve got a lot of exceptions, rules and regulations how we exercise our rights in that regard.

From zoning laws to bodily sovereignty, restrictions on what you can do with your “stuff” really runs the gamut in America.

I refused to join security clearance service Clear or take part in genetic testing at 23andMe because I simply didn’t trust that my genetic and biometric data wouldn’t end up being sold to a private equity shop in the event of bankruptcy. Which alas is exactly what is happening to 23andMe.

I don’t care for the state having my biometrics but at least it’s possible to advocate medical rights and personal privacy. The TSA and the State Department have me cleared for TSAPre and Trusted Traveler.

I don’t love it but I’ve got some rights that leviathan is meant to abide by. I don’t believe we’ve yet found a way to bind a corporation to a similar term of service. But the cyperpunk future seems more likely to give us less control not more.

Between the law of the low road and our current tendency toward “the idiot plot” in all areas of life it seems like ownership of our bodies and its data is a pipe dream. Hell you can’t even keep a Signal group chat secure anymore as any old idiot (or savvy Machiavellian) can drop in a journalist.

Categories
Medical

Day 1541 and Mycotoxins

One of the more exhausting problems that arose over the winter was mold contamination in our master bedroom and adjacent rooms.

It’s taken six weeks to get in the right folks for testing and assessment. We’ve not been able to start remediation as the best option for the job isn’t available.

Alex has been able to negotiate access to the various necessary tools to begin but it’s quite a bit of work to DIY during which I’ll need to be out of the house.

Working through cleaning all of the clothing and other sundries in the closet is also a massive project. Our dry cleaner is going to make out like a bandit.

However the worst bit of this has been the anti-fungal course of antibiotics my physician recommended prophylactically as during all of this we’ve been suppressing my immune system (with some negative side effects) as part of a medication protocol change.

I swear I can feel whatever mycotoxins may exist in my biome fighting the drugs. I’ve had an astonishing array of negative intrusive thoughts that don’t feel like my own. You have to wonder if my ride-along mycelium simply don’t want to lose their host.

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
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.

Categories
Startups

Day 1534 and Certitude

I’ve been busy with a founder who is running an astonishingly competitive seed round. Let’s just say I’m glad I wrote the first check.

I back founders long before it’s possible to have any certainty. I have accumulated enough signal and taste over twenty years to feel like I know when someone has what it takes to try their hand at a startup. It doesn’t mean it will work but I always believe in their capacity to do the work required.

Proving that out is probably the work of millions of pages of business school papers. No wonder we are complaining about the lack of builders. Wouldn’t it be better if we just put those resources into starting actual businesses instead of theorizing?

I’m a huge fan of always being a bit entrepreneurial. The much maligned “side hustle” that millenials and zoomers maintain out of necessity has its upside.

I like all scales and all kinds of business. Alex and started dating thanks to a swap on an Airbnb rent arbitrage. I’d let someone book dates for my apartment when I was supposed to be out of town. Trip dates change. Alex offered his apartment up if we split the profit. We’ve been in business ever since.

I’m working through a new local business plan we think will have community benefit (both in terms of job creation and service offering). Am I certain it will work?

Actually more certain than you’d expect this small scale that we can boot something up. Startups are much harder to judge than an existing business model with a new offering.

Incidentally if you are in Montana and looking for a medical grade hyperbaric chamber oxygen treatment we should have ours in a month or so.

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
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.