Tag: Chronic Disease

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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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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.

Categories
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”

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.

Categories
Biohacking

Day 1503 and Project Managed Health

You have to work the problem in front of you. Fixating on past problems or potential future problems does not fix the problem in front of you.

Bottlenecks are such a useful construct as most humans have experienced their all of their progress being stymied by one single obstacle. Be it a fallen tree in the road, a bureaucracy or a health problem, the bottleneck stops you.

Alas I find myself with multiple health projects that have to be project managed with timelines, budgets, and externalities on each other.

We’d been planning to start a new care protocol with an updated biologic but the discovery of mold in the master bathroom is a bottleneck.

We need to decide if starting new immune suppressants is safe in the house before remediation. Mycotoxins at a load marked as unsafe for autoimmune conditions makes me nervous.

Sure we are staying upstairs but is it removed enough to be a sensible move? Can we isolate me and begin treatment? Do we wait the multiple weeks remediation will take? How an we run parallel paths. It’s crazy to project manage one’s personal life like this but it’s also necessary.

This excitement has also slowed down movement on acquiring a hyperbaric chamber. I’d love to offer it as a service locally as there isn’t a single available one for off label use in the entire state.

I really do think this would feel unmanageable if we didn’t have new tools at our disposable. In particular the new ChatGPT’s Deep Research has made it much easier to find different bits of information to reach an actionable conclusion. Because I want to clear these blockers.

Categories
Biohacking Chronic Disease

Day 1502 and Always Something

When we first moved to Montana we did a pretty thorough home inspection. My husband flew in a friend who is residential contractor.

We didn’t need much remediation work. A bit of radon and we installed a state of the art water filtering system but otherwise everything from foundations to soil quality were looking good. But you can never be too sure things stay that way.

We’ve done some repairs and installations over the past two years and it would appear somewhere in there we must have had some water damage. We ran some mold tests and the reports are not good.

As we’d done so much testing before moving in we’d not done thorough assessment. It hadn’t seemed necessary. But as part of the new year’s rigorous “get a grip on autoimmune” push we did an ERMI test (done via dust collection) through an independent lab EnviroBiomics.

The Environmental Relative Moldiness Index (ERMI) test is a DNA-based method developed by the U.S. Environmental Protection Agency (EPA) to assess indoor mold contamination by analyzing settled dust in homes.

It uses mold-specific quantitative polymerase chain reaction (MSqPCR) to identify and quantify 36 mold species, which are divided into two categories: Group 1 (associated with water-damaged homes) and Group 2 (common indoor molds not linked to water damage).

The ERMI score is calculated by subtracting the log-transformed sum of Group 2 molds from Group 1 molds, providing a single numerical value to indicate the relative moldiness of a house.

Welp. Seems like we may have some water damage somewhere. We’ve got some theories from the last two years.

ERMI Score 18.3:
Places this bedroom in the higher range of mold contamination. Typically, an ERMI above 5 is already considered higher than average. A score of 18.3 signals a strong likelihood of hidden moisture issues or longstanding mold growth.

We also ran a HERTSMI-2 test on which we scored 20. That test is a bit more salient for my autoimmune conditions. And its results were not encouraging. Running that through ChatGPT’s new Deep Research.

This test is used to gauge risk for mold-sensitive or chronically ill individuals. A value over 15 strongly suggests that the environment may be unsafe for those with mold-related illnesses or sensitivities. Re-occupancy should be delayed until remediation and follow-up testing confirm substantially reduced mold levels.

We have to do remediation of some sort though we think it’s limited to the basement. But I’ll be staying upstairs for a while if this conclusion is sound. It’s always something.

Conclusion: The contamination is significant and poses a tangible health risk. Addressing it thoroughly is crucial, particularly given your household’s health concerns.

Categories
Biohacking Emotional Work Medical

Day 1501 and Hazy Shade of Winter

I have a hazy memory of my mother introducing me to 80s girlfriend the Bangles when the played a concert at Disneyland.

We’d play the song in the car when I was little but it seemed improbable that this actually happened. But sure enough they did play at Disneyland so maybe the memory really did happen.

Reality is so tenuous when it comes against the frailties of memory. How can we be sure of anything even with meticulously kept records.

We are finding out some of the limits of record keeping and we can unearth the secrets of the universe by total recall these past two years of consumer artificial intelligence.

I have been taking a few weeks to reset some of my health protocols. Being empowered with better tools for finding opportunities makes me more inclined to take action. There are new pharmaceutical options. We can piece together

I had a round of bad bloodwork and within days I was able to take action. It’s only been a few weeks but got back a fresh set today and am feeling more optimistic that the hazy shades of winter are being well used on improvements.

Categories
Medical Politics

Day 1495 and Respiratory Training & Divide and Conquer

I’ve been involved in a few conversations about how some startups (alas deemed the Tech Right) have found themselves aligned with a very unexpected coalition of people.

Whatever is happening it looks like a coalition of people who have lost institutional trust in the American ruling class has emerged as the majority. And naturally there is a lot of tension in the big tent as many of us have sincere reservations about the Trump administration.

The Biden era of Chokepoint 2.0 and censorship policies, a hostile M&A position, and threats to tax unrealized capital gains have left “little tech” from crypto to artificial intelligence to Figma employees fearful.

I am concerned that propaganda being what it is has manynarratives designed to weaken the resolve of this Americans majority.

In other topics, I am trying a Pr02 device to work on respiratory strength. It has shown promise in improving your V02 max by training your respiratory pressure through inspiratory muscle training. So I’ll be playing around with that as I’ve got 8 weeks of regular use before improvements show.

Categories
Biohacking Chronic Disease

Day 1491 and Snappy

I am a bit snappy at the moment. Everything hurts and too much is happening. Despite my endless horizon of opportunity my circumstances tightens to the pinprick focal point of pain.

Once you get angry enough that you quote Kierkegaard in public settings it’s probably a sign to knock it off.

I don’t have much of utility to say here except any problem that comes down to information acquisition is an excellent opportunity to make use of new tools so both myself and my husband have been deep in model comparison of different reasoning chains as we try to untangle IL-17 inhibitors vs 23.

It’s a weird feeling to be watching the crisis of institutional confidence in medicine play out over the most incredible extension of knowledge and capacity in my lifetime. PubMed spelunking? Pffft nah we got Sherlock Holmes mode for free.