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
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
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
Medical Preparedness

Day 1525 and Turbulence

I am doing what I can to hold steady in the turbulence of the moment. Deals are still getting done, founders move companies forward, I do my small part to contribute in the strange dance of rounds coming together.

It has not been easy with both my husband and I seemingly rotating between one health issue to another. It would be nice to have us both healthy at the same time.

Because it is the winter of our discontent I’ve spent more time on Deep Research projects this past month than seems sensible but the urge to find solutions is strong when your health needs mending.

Plus it saves a ton of time when the alternative is calling a bunch of different experts and making progress at best every two weeks with appointments. Scheduling health care of any kind is a mess.

I remember realizing so vividly during Hurricane Sandy that no matter the catastrophe the rest of life went on. Everything will feel turbulent in our new high variance age and all we can do is live through it.

Categories
Medical

Day 1524 and in the Red

The MilFred family household is not at its finest. My husband Alex seems to be in the throes of pneumonia while my body is doing its best to manage a host of medication changes.

We have all the typical work while this goes on along with a few other crisis management projects (mold). All dashboards flashing red.

I keep toying with posts saying I’ll have to consider if this is where the habit goes away or that I need some do not disturb time. This is certainly a big part of why.

Categories
Medical

Day 1517 and Blink Blink

I’m writing this in the waiting room of the new hospital campus in Bozeman. We’ve recently had an outpost of the Billings Clinic go up alongside the highway between Bozeman and Belgrade to keep up with the growth in Southwest Montana.

It’s really nice and absolutely packed with people. The average age looks to be early seventies so it’s not a young crowd in the eye clinic.

The only other mid-life people besides Alex and myself is a prison inmate in a yellow jumpsuit and his two Corrections officers. I had half a mind to go ask him what he was in for while showing off my own deformity m.

I’m unsure if it’s a side effect of changing medication or just plain bad luck, but I have an infection in my right eyelid. It started about a month ago and looked like it was a simple chalazion.

It’s sometimes called an eyelid cyst or a meibomian cyst. It slowly forms when an oil gland (called a meibomian gland) becomes blocked. Cleveland Clinic

But over the last month it went from painless little boba ball sized lump to my entire eyelid being swollen. It got much worse this week especially as I started applying wet washcloths to it regularly.

They were able to perform an incision and curettage (don’t click through if you don’t want to see some gnarly eye stuff) as my discomfort was pretty intense. I desperately wanted it drained and they did not disappoint.

Just wiping up the last of the pus

I hope this heals well and without issues. I fear this was complicated by the changes I’m meant to undergo in my medical protocol from one IL-17 inhibitor to another.

To soften any backlash in symptoms during the change I’m on another immunosuppressant so I’m particularly nervous about infections especially when it comes to sensitive areas like the eyes. I’m glad I was able to get this drained but I’m a bit nervous about how it will heal.