Tag: Disability

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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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Startups

Day 1521 and Reconsidering

I’ve been rereading the work of my internet friends Luke Burgis recently. His hugely influential book Wanting: The Power of Mimetic Desire in Everyday Life introduced popular culture to philosopher Rene Girard. 

I’d first encountered Girard at university and through Peter Thiel’s influence pursued further understanding of the work thanks to Luke’s scholarship on the topic. A quick orientation on the thesis is as follows. 

What Gravity Is To Physics, Mimetic Desire Is To Psychology”

I’ve found Luke’s thoughts on topics like existential safety and mimetic collapse to be regularly illuminating and would recommend reading his newsletter.

I am reconsidering some of the mimetics that are driving my life. We’ve had some amazing startup investments. I’ve been able to move policy issues into law. And I do it all with the added weight of chronic health issues.

It brings me joy to help the next generation of founders. It’s as close as I’ve come to a deep desire. I do it believe I love it.

I also have an idea of how it should look. The formality of funds and institutional investors has been the default way things are done in startups. I’ve never been too concerned with prestige but I have some attachments to what it should look like.

The irony being startups and the venture business are all about the big hit. There is no right way of achieving them as playbooks get rewritten every time we have a new technology.

So I wonder why I want things to look any way at all when the ultimate objective is to achieve a type of performance that is already emerging. Am I stuck wanting only because I want to mimic others? It seems possible.

That realization makes me want to let go of any preconceived notions of structure or aesthetic and to simply commit to my own process and how I find outliers.

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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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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
Chronic Disease Politics

Day 1490 and Healthcare’s Sin Eaters

I went to see a rheumatologist today. I had the baffling experience of them wanting to actually get to know me. Which was surprisingly unhelpful in the moment but really nails vibe we’ve got with healthcare in America.

I kvetched on Twitter that I spent my week defending hot girls and open source software while I deride Big Pharma and public employee unions. That’s more of a humble brag about my priorities. But I felt bad that I picked on pharmaceuticals. I got replies. Why harsh on pharmaceuticals? And actually fair.

Drug companies are the least bad of some very bad actors. For all its faults, drug companies are not just existing to be parasitic like pharmacy benefit managers or generate wealth through regulatory capture like Epic.

If anything pharma is the sad scapegoat in healthcare. We pick one drug a decade to laud & then like clockwork do a hard reversal on it in a decade or two. Patients get hurt and doctors did their best. We saw with statins, SSRIs, opioids, adderall, and I’m sure soon GLP-1s will be next to have Netflix documentaries. Someone is always to blame and it’s usually the drug companies.

Some category is designated a sin eater for the system’s horrors. Which isn’t at all fair as all those drugs serve real needs. Sorry Oxycodone you remain a villain. But why is American in so much pain?

Which gets back to my surprise as having a doctor who wanted to get to know me. We came in with a typed up diagnostics sheet with a timeline of treatments, protocols and medications and the bastard has the audacity to ask me about the quality of my life.

I hesitate to say “well shit” because I am Protestant from Scandinavians stock because we pride ourselves on being “oh just fine”

And of course I’m the asshole who quotes Kierkegaard at my doctor. Sickness unto death right Doctor? Which I guess is a bit of a downer.

The man actually asked me if I’d consider managing my pain more aggressively. I am absolutely mogged by the audacity of the sentiment that I could suffer less.

Apparently no one scans you for drug seeking behavior when you chuckle and kneel before what God has decided for you. So that’s a good trick I guess for the less sincere.

You can really see how public perception of RFK Jr is so different from what elite narratives would like to see. People are with RFK’s righteous indignation. Why are so many suffering?

The cranks and the crazies are here because America is mostly gaslit by a nest of bad incentives. Doctors don’t want any of this. Neither do the drug companies. But someone has to be blamed and it’s usually the guys with the money. But they are trying as hard as anyone to actually come up with solutions.

Maybe no one deserves to have a righteous Kennedy come after them. But everyone feels a little bit crazy with how the system works now.

Categories
Aesthetics Biohacking

Day 1488 and Tune Ups

The back half of 2024 was such a whirlwind I keep discovering new eras where I am behind on keeping the engines of my life tuned.

While I’m adding in new excitement to my healthcare like hyperbaric chamber oxygen therapy (in the market to acquire one for my own use if you have recommendations) I’ve still got to make the various rounds for everything from my general practitioner to my osteopath to my dermatologist.

If the world is going to insist on going at this pace and I’m unwilling to slow down (because why would I?) then it’s full speed ahead on regular time ups and maintenance.

I hadn’t been to my osteopath since August. I hadn’t been in for Botox since October. And apparently I’ve not had a haircut since July.

Yes some of these are a bit more cosmetic than health driven but I’m somewhere closer to an old Mercedes than the family Subaru when it comes to appreciating form and function.