Tag: Illness

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Biohacking Chronic Disease

Day 1471 and Lemons into Lemonade

I was so disappointed yesterday as I read over my most recent set of bloodwork and found my autoimmune biomarkers headed in the wrong direction.

I’ve been well controlled though my disease is not “inactive” or in remission. I manage it as it’s worth it to me to have a quality of life that includes working in technology as I want to be a part of making the tools that enable material progress in health.

Seeing things go in the wrong direction when my life is going in the right direction had a clarifying effect on me.

Not that I’ve been unaware that I must work at my health but rather it’s hard to always be working at health as it’s a matter of survival. But when you see a change in the data you act. I got serious and immediately went into action.

I’m so lucky to have to have access to an incredible community of biohackers. That I can ask someone who is studiously pursuing health in public is the best of the internet. I get the benefit of Bryan Johnson’s open sourcing his work. I’m doing an experiment with HBOT or hyperbaric chamber oxygen therapy and I learned from him I need it to be 2 atmospheres to be effective. This helps me plan and find hard chambers.

I can use Perplexity and Claude and even make my own personal assistant trained on my condition and my data is the remarkable thing.

I’ve found a new IL-17 inhibitor that looks to have twice the efficacy of my current one at the same dose. It was only approved in Europe but finally came on the American market. I was able to discuss it with my doctor immediately after going down a short question sequence on perplexity. You have so much power to improve your life now.

Shopping

I’d like to improve my V02 max and cardiovascular health in a way that works around my psoriatic arthritis and ankylosis. I have significant fatigue from the pain and obviously high impact isn’t in the cards for me. But I can try something like a DeskCycke. It’s even possible for me to do HIIT training with one. So I bought one. My goal is to improve my V02 by 10% in 8-12 months which shouldn’t be hard as mine is absolutely awful

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.

Categories
Chronic Disease Medical

Day 1468 and Going HBOT

I was extremely frustrated with an autoimmune reaction that got out of hand over New Year’s. I don’t care for taking corticosteroids as their side effects are quite severe even if they can be the only option when an immune response refuses to calm down.

To repair the damage, I went to a holistic clinic that offers a range of services like infrared saunas, IV therapies, cryotherapy and hyperbaric chambers.

I’d heard good things about using HBOT therapy for autoimmune responses, particularly ones that are rheumatoid in nature. I’ve done two sessions so far and I have seen a remarkably swift improvement in inflammation and pain.

I’ve got 8 more ahead of me along with some glutathione and vitamin IV drips so I’m hoping to be ship shape soon.

News and Sundries

The Chinese venture ecosystem has funds engaging in some suboptimal behaviors. They are clawing back personal assets, banning them from services and putting founders on no fly lists. Which is needless to say not the best way to encourage innovation.

Mark Zuckerberg is taking a new tack with speech at Meta. The company employing content moderators for what is true is out and enabling Twitter style community notes are in.

Many moons ago Antonio Garcia Martinez warned that Facebook shouldn’t be involved in policing and censoring speech as it would lead down a dark path.

Much To Consider

Is most memetic self help that propagates well online now predatory in nature? A tweet thread to consider for those looking to have emotions or control them.

Categories
Medical

Day 1465 and Biohacking Help Request

I’m having a bit of trouble with an autoimmune flare so I’ll keep the narrative but short.

Essays

Everything is About Sex. Femininity is About Power

Shopping

I am going to take a course with a Twitter mutual on building an AI life coach for myself. It’s an exercise in accountability for my playtime & learning.

Considering buying this Hooli vagus nerve stimulator.

Tweets

Geeks, Mops and Sociopaths in the Memetic Of Woke

Medical

I’m looking for my next step in my medical care. If you’ve been watching the blog over the last few years you’ve seen my struggles with chronic health issues and the work I do to be well enough to pursue my work.

But I’m at an impasse and I know we must have more solutions than what I’ve got. Looking for a doctor or research group that may have protocols or care capacity for the autoimmune buffet of nonsense that plagues so many. I have ankylosis & psoriatic arthritis, joint pain & anaphylactic allergy issues along with migraines.

I’ve worked with woo, lifestyle and nutrition changes, supplements, osteopathy, injections and IVs, longevity science & expensive biologics to pursue the functionality I have now to work. But I long to work the hours of my youth and I don’t believe science has progressed so little that arthritis and migraines should be so painful and exhausting. So please feel free to DM on Twitter with recommendations for clinics and physicians.

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Internet Culture

Day 1463 and Nuke It From Orbit

Seems like everyone I talk with is extremely sick. We’ve got norovirus ripping through a bunch of populations in America and Europe. Lots of reports of flus and Covid variants taking folks with respiratory cases in my professional and personal life. And of course everyone is worried about the H5N1 the bird flu variant.

I myself am having some autoimmune flares that I’m resorting to treating with steroids which is extremely frustrating. I fear the power of immune system rebooting drugs like prednisone.

Steroids are the “nuke it from orbit” option when your system is too reactive. I try to dose it down as soon as symptoms clear but blowback sometimes means you can’t titrate off them without symptoms returning. I rarely do more than 5mg a few days in a row.l but even then I worry about its usage. Being covered in hives and unable to think from an autoimmune response is probably worse though. Minimum viable dose in all things.

Reading

The SEC Wrote Off 10B in Fines it Can’t Collect

The News is So Awful 40% of WaPo Coverage Triggers Advertising Safety Blocks

Maybe Skip Breakfast?

The WSJ shows some terrifying price trends in the most important meal of the day

People To Follow

Andy and Keturah Hickman are some of the most interesting people I know. And you can be pen pals with them.

Stuff to Buy

I’ve never quite managed to keep up regular usage of a red light mask (needed antibiotics a few times since I purchased one and they make you photosensitive) but Beautypie has the same OEM as much more expensive versions if you are in the market. Affiliate link for $20 off.

Categories
Emotional Work Internet Culture

1443 and Irreducible

Being “spreadsheet brained” has become a shorthand critique for the technocratic mindset that prefers to see with abstractions rather than through immediate physical reality.

I don’t have a full history of the term but it was brought into my lexicon by Ashley Fitzgerald of Doomer Optimism.

A Wojack suffering from an inoperable tumor called spreadsheet brain.

Having spreadsheet brain can be a quality of life problem. If you are particularly numerate you can easily fixate on the negative statistics. We then use those facts to isolate themselves from the each other. It’s a classic case of seeing the price of things and not the value. It can easily become a very smart form of stupid.

I’m more of a whole to parts thinker myself so I’m amused by this meme even though as someone who works with tech startups I’m obviously susceptible to spreadsheet brain issues.

It’s reasonable to have concerns with thinking only in abstract terms. The topology of human experience is complex and yet we have many tools that take the irreducible and cook it down into something concentrated, clear, and altogether too legible. We desire to be seen but perhaps not too closely.

Categories
Community Internet Culture Medical

Day 1440 and The Pain We Won’t Name

Americans are in pain. Literally and emotionally. How that happened isn’t my focus. We are in the middle of a national conversation about the failures of institutional medicine and its relationship to our government. We are treading in deep water and it’s best not to get swept away.

There are many communities that have emerged on Twitter, Reddit, YouTube, GoodReads and elsewhere dedicated to the many paths available to go about fixing the problems in your life. There millions of strong communities of interests, hobbies, courses, and network knowledge that can enable you.

One of those communities is called TPOT. What is TPOT, who is in TPOT, what are its values and what does it believe are all involved and sometimes contentious questions. Being illegible is a big thing.

We mostly agree it stands for “this particular corner of Twitter” which is a loose network of nodes of people interested in applying knowledge they learn across our networked multimedia to their real life.

The experimental “you can just do things” attitude is a big tent. You see DIY projects, tutorials, reading lists, artificial intelligence and coding discussions, fitness and biohacking experiments, nutrition and cooking, meditation and nervous system research, pain management, psychology and emotional wellness and much more. You also see more far out woo woo topics like psychedelics, evolutionary psychology, and many flavors of rationalism and epistemology.

One of the most qualified voices to speak on TPOT might be Brook Bowman of Vibe Camp. In my understanding of her interpretation, TPOT is a memetic virus and once you touch it you are in the topology of TPOT for good.

tpot is this crazy memetic virus where the term itself means so little and is so contagious that you kind of become part of it just by hearing about it

Brooke

This is protective and makes it resilient. The network is bigger than any node and this is a good thing

So TPOT is best understood as a network composed of many interoperable nodes of interests and many layers of engagement. A memetic complex that you become part of on contact. If you read my blog it’s likely have many clear lines to TPOT.

If you like fitness, coding, rationalism, nutrition, or even home improvement well congratulations you are one or two nodes away from “just do things” as a life philosophy yourself and might be a member of TPOT yourself if you talk about it on Twitter.

And this is now some very dangerous semiotic territory as we cope with the gaping wound that is American health and murder. And I am concerned the narratives are going to be heavily fought over territory.

Because it’s easy to dislike a techbro right now. It’s pretty easy to dismiss the group. I can see it now. “Are your friends into this weird sounding acronym TPOT? Have you heard someone say “you can just do things?” If so you need to alert the authorities!”

Of course this sounds funny and histrionic. It’s totally normal to take responsibility for what you can in your life and try out ways of improving your life somewhat.

Everyone is dealing with pain (chronic or otherwise). Being an adult is a set of emotional challenges to manage and most of us do so by making the shocking decision to take action and do something. That doesn’t mean this world is is dangerous. It certainly doesn’t mean murder. It means doing something in your day life like lifting some weights, shipping some code, checking your biometric data, and trying to be a friend to lessen the pain most of us are in.

Categories
Biohacking Chronic Disease

Day 1433 and Pardon The Interruption

I’ve been running around keeping a busy schedule while I’m on the road for a few weeks on the west coast.

I had a number of things I wanted to do today but I’m so tuckered out I have been slowly passing on everything.

My stomach is upset, I’ve got a migraine that isn’t quitting and everything hurts. So pardon me for the interruption in my regularly scheduled posting but I am going to attempt one of those sixteen hours of sleep nights in the hope that any issues can be fixed with rest.

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Emotional Work

Day 1423 and Reading The Riot Act

One of my friends recently fed the entirety of my daily writing experiment into Google’s NotebookLM podcast generator.

We both like to tinker with new artificial intelligence features and I have got a large training set with lots of tagging.

The synopsis it kicked out of two chatting AI hosts makes it sound like I have written a New York Times bestseller on the cultural and emotional adaption in the Great Weirdening.

The smoothing function of compression makes me sound way smarter than I think my daily output might suggest. The aggregate quantity has a quality all its own.

So naturally instead of sharing those wins with you I’ll show the emotional underbelly. He asked it to generate my blind spots and boy did the AI read me the riot act.

Beware the AI knows you better than you know yourself

I don’t know if I am blind to these as I see them as faults. I can easily go down rabbit holes and overextend myself. I worry about my physical capacity constantly. That’s why it’s such a clear theme in my writing.

I definitely recommend this as an exercise if you have enough personal content to feed into the generator. Seeing clearly into your blind spots gives you a chance see around the corners of your own life. It’s not quite the same thing as therapy but maybe just as useful.

Categories
Internet Culture Media

Day 1393 and Babylonian Memetic Death Cults

We call catchy songs “ear worms” but instead of calling catchy ideas “brain worms” we went with Richard Dawkins’s coinage “meme” and I think that’s a pity. Normies find it simple to grasp the term brain work while meme remains coldly academic.

According to this synopsis from Perplexity, Dawkins proposed memes as the cultural parallel to genes, acting as self-replicating units that spread ideas, behaviors, or styles from person to person within a culture.

Thankfully, the extremely online regularly use the term “brain worms” to describe people infected by any number of ideas ranging from the political to the aesthetic. They aren’t good or bad ideas necessarily. I’d include Trump Derangement Syndrome, girls with septum piercings, the uptick in jhanna meditation as flavors of memes that infect different types of minds.

I’m sure I’m infected with at least half a dozen brain worms (hopefully the memetic variety unlike RFK Jr) despite good informational immunity. There are benefits in having hippie parents and media literacy but the occasional infection is inevitable.

Our minds, our bodies, our computers and our networks can get infected with parasitic diseases and carry viral loads. From Covid to e/acc to the Goatse Singularity (safe to click) we’ve had a lot of novel pathogens recently and some of them are even good things.

Programmers and early Internet citizens have probably have more exposure to the modern theory of memetics than most.

Dawkin’s original coinage, while still a helpful theory, has been surpassed by the colloquial understanding of meme as popular cultural detritus that spreads online.

Given Internet network density, smart phone ubiquity, and algorithmic driven feeds, we’ve never been able to spread memes more readily. The topic is particularly interesting where it intersects with artificial intelligence and cryptocurrencies. Make something worth sharing and it has value.

Neal Stephenson’s Snowcrash has a neuro-linguistic virus derived from Sumerian mythology where natural language programs the human mind like we now program computers. It gets used in nefarious ways.

This of course makes you wonder if it’s so easy to make people share ideas how hard is it to make people forget them? There is no anti-memetics division right?

An antimeme is an idea with self-censoring properties; an idea which, by its intrinsic nature, discourages or prevents people from spreading it.

I wonder if my brain worms have made me memory hole anything recently. Given that we have an election coming up seems worth considering.