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.
I dislike having to set specific wake times up for early morning obligations. It always disturbs my sleep the night before as my mind convinces my body I must avoid missing the obligation. I’ll wake up 3-4x more than average to check the time and I’ve not oncd overslept.
As I’ve been doing an intensive course of HBOT (hyperbaric chamber oxygen therapy), I’ve been obligated to show up at a specific time and place each day. And it’s really messed with my sleep as my mind seems intent on reminding me to wake up early enough to be on time.
I’ve got a day off today and I’m happy to be spending it sleeping and browsing the news.
One of my favorite founder/authors Hannu Rajaniemi has a new book called Darkome. It’s not available in the American markets yet but he’s hosting a book party for the JPM Health Conference in San Francisco on Tuesday. I have a few invites. Again DM me for the hook up. It’s a fantastic thriller
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
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.
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’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.
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.
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.
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’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.
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.
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.
