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 1467 and Hyperbaric Chambers

I had a pretty rough anaphylactic experience over New Year’s Eve (fireworks are pretty but dusty) that has me reaching for steroids to calm the hives. My autoimmune response was awful

Not being one to take being sick laying down, I decided to make a run to a clinic that has a hyperbaric chamber. I’ve known a number of athletes who use them as well as those who suffer from rheumatoid diseases. I signed up for ten sessions as frankly I need to recover from the horrors of the corticosteroids I took. 

Happenings

Salt Typhoon is much worse than we thought (WSJ)

The number of people searching for office jobs for at least six months is up by 50% since 2022. (WSJ)

Justin Trudeau resigned today (WSJ)

Other Cool Stuff

 The Open Longevity Project

Categories
Chronic Disease

Day 1466 and Bubbles

I feel as if I have bubbles in my joints. They move and grow and every change hurts so badly I can’t stop myself from crying.

I’ve put out a request for biohacking help as it doesn’t seem like my current routines (which have been stable enough for normal work) are doing the trick any longer.

It’s hard sometimes to tell the difference between pain itself and the fear of the pain not relenting when the pain becomes acute. I get scared that the ever increasing pain won’t be controllable.

I’ll riffle through NSAIDs, Tramadol, and the dreaded stronger options as I do box breathing and voo-hum breathes. I’m practiced at throwing my attention away from the pain but the physiological impact is the same even if my mind can distance itself.

Before I was first diagnosed with ankylosing spondylitis and psoriatic arthritis, I had doctors try to convince me it was all in my head. “Take an Ativan!” I’ve never quite lost the fear that I won’t be taken seriously as pain management is such a clusterfork in America.

Addicts abound and doctors are often skeptical and malicious. It can feel as if those of us with chronic pain from illness will never be able to get enough distance between our genuine needs and the “drug seeking” junkies in crisis on our streets. We get treated like criminals with suspicion while zombies on the streets find other ways.

I’ve never known the supposed euphoria of an opioid like OxyContin as for me the rare occasion where I take on feels more like a brief respite from horror. There is no joy or ebullience. Only a mind of normality of function and clarity of mind which I imagine normal life is like for most people.

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.

Categories
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
Chronic Disease Medical

Day 1456 and Altered Window of Immunity

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.

Categories
Biohacking Chronic Disease

1452 and Bone Deep Weather

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.
Categories
Emotional Work Media Medical

Day 1441 and Fever

I woke up at 4am with my racing heart. I looked at my Whoop biometrics and my resting heart rate was abnormally high. I’m talking 110bpm at the peak of my REM cycle. I obviously has a nightmare.

I figured that nothing could be that scary so I took my temperature. Sure enough I was running a light fever.

The last few days have been a particularly gruesome one the internet. Rapid change, institutional distrust, and chaos have led us to blood. And instead of sorrow it’s all cheers and memes.

I hope it passes quickly. Both my own fever and the one gripping the timelines. I feel in need of some time off from the world. It’s been an intense year. I pray for more introspection through advent.

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.