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
Emotional Work

Day 1548 and Future Perfect

Back in my distant Williamsburg hipster past I lived in a loft above a furniture store called Future Perfect. I am lucky enough to have acquired a couch from them but that’s a different story.

I didn’t envision exactly the kind of Future Perfect that I and the aforementioned coach would come to inhabit. Both the couch and my current life would have seemed crazily out of reach to me in the middle aughts.

This isn’t to say that life turned out perfect but it feels closer than I might have imagined. Many aspects of the future I was hoping to live seem almost comically small in their scale compared to what’s actually possible.

I hope this remains true for the future perfects that are yet to come. I see the rapid change in technology and I feel hopeful. Then I remember human nature and I have more trepidation. Either way, all I can do is take good care of myself now.

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
Community

Day 1532 and Friendly Service

Much of our winter has revolved around various maladies that require the help of professional from doctors to industrial hygienists.

Alex and I (let’s be honest mostly Alex) have been scheduling a lot of consultations and procedures. While I’ll certainly caveat that selling a service does generally mean being friendly to the customer. But it really feels like like we’ve got friendlier people in Montana.

Even our government is friendly. We’ve has cause to call the county and it’s just so pleasant to engage with a kind, present and helpful fellow human.

We’ve really run the gamut. Our trash needed replacing after a hard winter and the company who does our pickup sent us a new one the next day. A recycling service for mattresses excitedly told us about community programs. The eye clinic got us in the day we called. And on the follow up let us add in an eye exam since we were already there.

We are all accustomed to the frustrations that come from indifferent corporations with private equity minders. Healthcare is by far the worst offender here.

So it’s nice to be reminded in a vulnerable world that American towns are filled with everyday people like you and me. And that genuinely makes me happier. We are all in this together and being friendly makes everything for everyone.

Categories
Medical

Day 1531 and Dumb Novel Problems

I personally find I’ve got an adequate number of problems in my life. I’d rather not go searching for new ones. And yet they keep cropping up no matter one’s hopes.

I’m at the eye clinic at the hospital for a two week checkup on an infection that felt like it literally ballooned my right eyelid. It was either a cyst or a chalazion, the doctor was like eh treatment is the same.

Not to upset those with weak stomachs but the treat is slice open your eyelid and squeeze out the pus, blood and scar tissue. It isn’t as painful as it sounds.

After two weeks of diligent hot washcloths, antibiotic eye drops and doxycycline my eye has reduce the lump to a small pea or large lentil. My body was trying to move it out but it needed a bit more help.

So she sliced it open again seeing if we could get anything else out. Alas the tissue scaring was most of the volume so there was less ooze to be pushed out.

She said I could wait it out but it takes months to move it naturally or we can do a steroid injection and reduce the swelling so it clears more easily.

I’m not a big fan of prednisone when I’m taking it internally but a little localized dexamethasone shot into the eyelid seemed like a good plan to me.

I’ll say that it’s a bit scary trying to stay perfectly still while someone holds a scalpel to your eyelid. Having someone inject a needful of steroids is much worse from a base animal terror perspective for me.

I’m safely through it though now my eye is all puffy again. I’m likely to have a black eye for a bit so I’m excited for all the jokes Alex and I will make about how he hit me. Nothing more awkward than a wife with a black eye.

Categories
Emotional Work

Day 1530 and Pandemic Anniversary

March 11 2020 was the day the World Health Organization declared Covid-19 to be a pandemic. It’s been five years since we had our once in a century pandemic that changed everything. Honestly it feels like it just happened.

You can quibble a bit on the start (right there in the name alluding to its discovery in 2019) but this second of March the week where America finally started changing behaviors. Within two weeks we’d have the infamous “flatten the curve” discussion. What a shitshow those early days were.

The pandemic changed a lot of people’s lives. The New York Times has a feature with 30 charts about how the world is different that I found interesting.

My life changed in a lot of ways that are probably recognizable to other Americans. My already digital life became how business was done. I moved back home. I rethought my relationship with institutional trust.

We lived in New York when we were locked down. Alex and I didn’t leave our one bedroom apartment for three months except to go to the CVS.

Coincidentally we’d been in the middle of our landlord trying to evict us for filing a complaint with the department of buildings over broken elevators. That got stopped. As soon as it seemed safe to leave city we rented an Airbnb in the Hudson Valley. The next week protests broke out. We had lived above City Hall so we got very lucky.

Figuring out where to land and the shape of our lives was a process. The Airbnb phase felt stressful as the summer ended and the urge for permanency felt overwhelming. We signed a lease site unseen for a townhouse in my hometown of Boulder Colorado.

Much of the rest of these past five years have been subsequently documented here on this blog. We found our way to Montana. A lot happened in those intervening years. None of it felt like it happened very fast. And yet here we are.