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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.

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
Aesthetics Emotional Work

Day 1500 and Counting The Days

Somewhere in this blog there is a date error. It’s probably easy to find. I noticed the day I did it (I believe I was ill and got confused) and then time streamed on and now it barely matters.

Oddly I only care to mention it because I notice more when things are done in day by day format. We have 10 day retreats, month long sprints, quarterly focuses, if you are large enough to have yearly plans good luck to you.

We asked for acceleration and we got it. Timelines are so preposterously fast we can count them in shorter bursts. The Wall Street Journal has an administration day count for Trump. Today is day 21. Which is a light day involving golf with Tiger Woods and going to the Super Bowl.

I’m not inclined to dramatic pronouncements about the future (ok maybe a little). Humans don’t change too quickly their hard learned ways. But we are getting so much more information at such rapid pace right now that if you are inclined to count the days maybe set some goals for them.

Categories
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
Aesthetics Politics

Day 1481 and smh

When I got started with my daily writing project I knew there would be days when I did not want to write. Today is one of them.

I actually expected “ugh no want to write” days to be more frequent than turned out to be true. I’ve bitched about it 51 times which isn’t a lot in the grand scheme of things.

I knew I’d find a way to force the issue just as I had made other habits a part of my life. You really can make almost anything a habit if you are so inclined. But I rarely have to force habit. I just do the thing till it’s either a habit or it’s clear it’s not for me. They say it’s 21 days but I’d give it more like 100 to be safe.

Things I just do every day include applying facial moisturizer, brushing my teeth, squatting (no not just on the toilet I mean the full body compound exercise), taking my vitamins, Tweeting, playing a stupid pay to play Chinese mobile game, telling my husband I love him and opening up my mobile content management app to write this post.

And yet I am in a real “smh” place today with my attempts to find meaning in any of my habits. I’m disappointed in more than a few things. It’s all very Cthulhu and Antarctic cold vibes for me today. Sure it’s -20 in Montana but it’s very sunny so it’s cheery dread.

Anyways, the interregnum is over, we have a new President who is an old President and everything that is new is old and everything old is new again.

The entire Arnault family showed up for the inauguration so Dior’s New Look is back. Does that make this a post war moment? Did we live through a cultural revolution and not even notice? Smh.

Categories
Biohacking Chronic Disease Medical Uncategorized

Day 1476 and Don’t Stop Till You Get Enough

I’m thrilled to see that the very week I began my hyperbaric chamber oxygen therapy that we’ve had multiple experiments and data come in.

Bryan Johnson helped answer a few questions in my set up so I was delighted to see he himself was just wrapping up a major experiment with HBOT.

Step into my hyperbaric chamber courtesy of Bryan Johnson’s Twitter

Earlier in the week Harvard professor David Sinclair tweeted a thread on with links to the newest scientific literature on treatment. Stuff with names like Activation of SIRT1 by hyperbaric oxygenation promotes recovery of motor dysfunction in spinal cord injury rats

Esssays

A lovely meditation on what happens when you write 11,000 blog posts. In this case startup blogging. I’m written an order of magnitude less so hopefully I can avoid some of the negative consequences and enjoy the lessons.

Categories
Biohacking Chronic Disease

Day 1475 and Equalizing Pressure

I scared someone really badly today. As I was being locked into the hard shell for my eighth hyperbaric chamber oxygen therapy session, I realized I had forgotten my chewing gum.

At 2 atmospheres of pressure it can be a real challenge to keep your ears from getting painfully congested. Even with yawning and blowing oxygen out your nose, it’s like going into an airplane with a sinus trouble. It’s uncomfortable but it can also be dangerous.

Careful. Equalize the pressure in your ears. If you feel your ears stuffy, equalize the pressure in the following ways. 1. Yawn 2. Swallow saliva. 3. Close mouth, pinch the nose, out of breath, blow the nose (all spelling mistakes theirs)

I got a little panicked as I was trying to stop the clinic technician from finishing the sealing process as I wasn’t sure if they could stop it once it was sealed or if I would need a full decompression cycle.

I was texting frantically “I forgot my gum can this be stopped ASAP so I can get it?”

I was tapping the window on the hardshell with a worried look and showing the text. I kept trying to make the font bigger and be clearer. FORGOT GUM OPEN?!

But it was confusing enough that everyone in the room thought something was seriously wrong. Which it would have been without the gum as I can’t do a full hour at 2 atmosphere without the help of the chewing. All the yawning, blowing out through the nose and other techniques aren’t quite enough.

It wasn’t yet an emergency. If it was I would have hit the big red button. But everyone seemed to think it was. After 2-3 minutes of frantic miscommunication it turned out that it was fine to open it up but we’d need to restart the seal and pressurize it again. I got the gum. And look who was on the TV screen.

Just don’t die while inside the chamber

Categories
Emotional Work

Day 1474 and Process over Outcome

It’s hard to trust, well, anything. The uncertainty of the near future looks like the uncertainty of the far future right now.

It feels as if one is in a fog so thick that you can’t see your own hand reaching out to touch something at arm’s length let alone glimpse gjr far horizon

How do we set goals and work towards outcomes in that kind of world? I find it unsettling despite having years to prepare for a more chaotic world.

I am learning to let go of grasping for specific outcomes and lean on process to bring me to outcomes. I work the problems in front of me. I maintain the protocols that work for me. When they cease to yield results I change as rapidly as I am able.

Categories
Biohacking Chronic Disease Medical

Day 1470 and Disappointing Biomarkers

After my anaphylactic adventures over New Year’s, I decided it was time for a fresh round of bloodwork to see just how my inflammatory responses were doing.

I got them back and it shows exactly what you’d imagine from a patient with an active autoimmune condition. My sed rate, or erythrocyte sedimentation rate (ESR) made a significant jump from last measurement.

I’d been on the high end of normal for almost two years and this set returned with doubling of the previous number. This biomarker is used in conjunction with C-reactive protein (CRP) test to determine overall inflammatory responses. That test came back modestly elevated but not atrocious. I also have elevated IgA levels, also known hypergammaglobulimia so that’s a bummer.

It would seem that my relatively well controlled autoimmune disorders (psoriatic arthritis and ankylosis) are moving to an active phase.

Given my use of IL-17 inhibitor injections along with a pain management protocol, lifestyle and nutrition management and a focus on holistic interventions, these results are obviously quite disappointing to me.

It would seem 2024 was harder on me than I’d have preferred and 2025 will be a year of doubling down on holistic therapeutics. Red light, infrared sauna, cryotherapy, hyperbaric chambers oxygenation, and any other anti-inflammatory treatment I can throw at it. Not that I’m looking forward to trying get another round of elimination diets but needs must.

I’ve not changed my the cornerstone therapy secukinumab since the pandemic, so it may be time to see other options like Janus Kinase (JAK) Inhibitors.

I’ve tried Tumor Necrosis Factor (TNF) Inhibitors as well as methotrexate (otherwise known as chemotherapy) and none of those treatments (Humira, Embrel) helped much and dosing on and off of biological injections is a long process. It can take up to six months to see results and changing a treatment that has been working comes with significant risks.

I’m lucky that even with these biomarkers I am still functional. I am able to work semi-normal hours and am able to groom and exercise. I have no personal life to speak of nor do I have hobbies beyond my work (unless reading counts) so I’m lucky to love my family and work enough to have it provide enough meaning to keep going.

Much of my success in treating this chronic complex case has been made easier with the breakthroughs in artificial intelligence.

Even as my physicians have retired and my care team rotates, I am able to progress and learn more thanks to large language models and search tools like Perplexity. I’m confident I will find a way to get back to remission quickly with little disruption.

Nothing provides me as much motivation to work as disease. I see how I and other patients like me suffer and I double down.

The progress we’ve made on autoimmune conditions in the wake of Covid and the rapid progression of protein discoveries as more AI tooling comes online. A chaotic world with a chaotic body drives my investing. We can do better as I see so much progress.