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.
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.
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.
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.
You ever push yourself so hard (physically, emotionally, mentally) that you crash afterwards? This is a common human experience. It’s called an altered window of immunity. Over exert yourself and you get sick.
I’ve come to understand the Christmas Break period as my yearly window of altered immunity. One reason I like to fast during the Holy Nights is to bring down my own physical and emotional reactivity.
When basic functions feel stressful and even small involuntary processes like digestion feel inflammatory then the work of living feels toxic. At that point one hopes rest is enough to get it out of your system.
The human tendency to ignore small problems until they become big problems is surely part of a wider cycle of disease. We wait to rest and repair till it’s too late and find ourselves crashing. For everyone bobbing along on the waves of life be sure to take a deep breath before plunging back under. It just might save your life.
When the weather begins a shift to wet, cold or otherwise stormy, I feel it like some poor grandmother in a folktale.
My joints begin to ache, I feel swelling across my fascia and my ankylosis pain intensifies. Why do joints hurt when a storm system moves in? We’ve got a couple plausible explanations for all too common phenomena.
Barometric Pressure Changes: Before a rainstorm, barometric pressure (the weight of the air) typically drops. This decrease in external pressure can allow tissues surrounding the joints to expand.
Humidity and Inflammation: Rainy weather often brings high humidity, which may worsen inflammation in joints, particularly for those with conditions like arthritis.
Thanks to Perplexity the bone deep discomfort of a storm front becomes much easier to understand.
Cold conditions can stiffen joints by thickening the synovial fluid that lubricates them. Reduced blood circulation may also contribute. Changes in weather can make nerves more sensitive which amplifying pain signals.
The remedies for these changes are pretty basic. Stay warm, get your blood flowing with some light exercise, stay hydrated, stretch and take anti-inflammatory medications like NSAIDs to mitigate discomfort.
I asked Grok to draw me as a cyborg granny out in front of a storm
Prompted Grok to draw me as an arthritic cyborg granny in a rocking chair waiting and watching as a storm comes in.
A quibble I have with modern industrial living is the prevalence of overhead lighting. I know we have to tolerate the bright lights in public and institutional spaces for reasons of cost, efficiency and clarity but why on earth have we found it to be acceptable in the home?
I’m grateful our divas bring their significant cultural gravitas to this debate. Bless Mariah Carey for leading the charge on this assault on the senses. I’ll let her not terribly articulate quote from a podcast speak the truth.
”I can’t with the overhead lighting. Why do they do it to us?,” Carey, 55, said. “But overhead lighting I don’t think so honey. Please stop it!…Everywhere I go, shut the lights! I don’t want to see them no more. Overhead lighting, it makes me sick.”
However it is relatively challenging to do cool focused lighting well. Yes it possible to do overhead track lighting in ways that bring focus and don’t overwhelm your senses. But it’s harder to do right.
You’d probably have to literally light Mariah Carey for a living to do it in a way that’s comfortable for someone with sensory issues. I developed migraines in my thirties and combined with my spectrum level sensitivity to noise, sound, taste and light I don’t need to push my luck. .
Given that us mere mortals without expert lighting design have to live comfortably, I fully stand by my preference for lamps and multiple light sources in my private spaces. It’s just going to be less of a headache. Literally.
If you light from overhead with bright cool tones bulbs so you can see the details I get it. I can’t fathom why I’d want that for anything but cooking, cleaning or sewing.
When the it’s time to relax and interact you are damn right I want a nice warm lamp. Now I’ve got double the lighting. No wonder the topic gives so many of us headaches.
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.
