Tag: Medical

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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.

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.

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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.

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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.

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Internet Culture Media Medical

Day 1499 and Not Up to Speed

I enjoy my daily writing as it forces me to put my sensory apparatus to work at summarizing the inputs on my systems for the day. Being a human, my processing is laggy.

I came across this graphic from Hinterland’s Twitter. They created it show compression of the our body’s sensory inputs. A lot hits our mind and very little of it gets to conscious thought.

The human body sends 11 million bits per second to the brain for processing, yet the conscious mind seems to be able to process only 50 bits per second. – Britannica “Information Theory”

It seems to me we are not prepared for this moment of unprecedented complexity given the hardware we are working with.

Some of us may have slightly different software so it’s not all hopeless. It just seems like as a species the complexity of our environment relative to our baseline physiology is looking a little iffy.

I have a kind of optimism that we will find a way to meet the moment. Right up until we can’t?

I’m am looking to do whatever upgrades I can to hear the signal in the noise. But maybe a booming voice from the sky is easy to hear than the endless chatter of our world. Or maybe we have to find another way to achieve resonance and hear.

Categories
Homesteading Medical

Day 1497 and Doing Poorly

Maybe this is typical for mid-winter but it sure seems like everyone is doing poorly.

We’ve been pretty socked in weather wise in Montana for the last week so it was easy to get lost in the usual winter issues of snow accumulating and cold temperatures. It’s beautiful but isolating.

Adirondack chairs peeping out of the snow

But it’s not just Montana feeling the winter. We’ve got storm systems all across America. Seems like snowstorms and ice storms are hitting hard. Extreme weather patterns remain the norm for us all.

Influenza-A is having a second surge. When someone gets a cold or even the flu they usually describe symptoms. When it’s bad enough that you finally go to a doctor and get a test then you start to hear about the Influenza A diagnoses. And I’ve heard dozens of cases over the past two weeks.

I feel pretty poorly myself but it’s not influenza-A. I wish it were so simple. I’m not sure what’s going on but we’ve got doctors on the case.

At least our chickens are dug out of the snow. We’ve had so much accumulation over the last few days that our normal tractor plowing of the drive is inadequate. We need paths dug out to other areas too. Alex took out the small walkway snowblower and made a path around.

Our third and smallest snowblower barely up to the task of digging out the chickens

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.

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.