Tag: Chronic Disease

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
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
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
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
Internet Culture Medical

Day 1439 and Landshark’s Prophecy

I don’t like to write too much about developing news especially when it is an emotional topic like murder. The assassination of United Health Care insurance group CEO Brian Thompson last week was horrific. Today’s news that the manhunt found a person of interest Luigi Mangione is exploding into chaotic narratives.

The fog that surrounds violence leads to reactivity and it’s very easy to get things wrong. And the narratives surrounding this young man are both surprising and yet easily spun to cater to a number of simple biases.

One of those biases that I suspect will be warped across the news cycles is so easy to believe it’s making me suspicious.

The young man has easily accessible social media accounts some of which were still up when the news broke. I followed him on Twitter myself to see. What I found made me a little suspicious.

A centrist Penn shredded HuberBro Thiel tweeting TPOT moots futurism policy aesthetic gearporn guy adding maximum anarchy into the system as the UHC murderer does not feel right.

@almostmedia

His GoodReads account shows a man who read a lot of health optimizations literature including quite a bit on back pain and psychedelics. His follows on Twitter were almost uncomfortably midwit thoughtfluencer types but hardly any outside the Overton window.

The Twitter profile of the suspect.

Frankly if I wanted to make make a narrative about disgruntled dangers of TechBro philosophy I’d be trying to steer this conversation into an Uncle Ted speed run to reinforce hostility towards these ideas. It’s easy to see the dark side of the agency discourse & “just do things” set of values if someone kills.

If I found medical system skepticism and Silicon Valley threatening to my interests I’d be latching onto this story as fast as I could to explain why it’s dangerous craziness and the world view should be pitchforked.

There are also very already easy narrative explanations for how an attractive man with an elite institution set of credentials could have snapped. The suspect is so normie in background and so bleak in worldview and he had back surgery and took shrooms. An iconic tweet from Landshark about ayahuasca seems prescient

Categories
Community Emotional Work

Day 1428 and Thanksgiving

It’s nice to have a record of multiple years of thanks to look back upon. In 2023 I was thankful for the serenity of acceptance. In 2022 I was grateful for regaining optimism. In 2021 I was grateful for the small measure of health I’d gained.

In 2024 I’m still optimistic (albeit cautiously) as I have the similar amounts of health and acceptance keeping me above the waterline of our chaotic reality.

I am thankful the incredible amount of progress I’ve made in my work this year. We’ve done so well with our first fund at chaotic I have little fear that we will continue building it even as the markets remain a challenge.

I’m thankful for our founders who made it possible for me to make a go of investing in weirdos.

I’m thankful for my marriage. Alex and I have made it to our second decade together. I highly recommend marriage if you get the chance.

I’m grateful for so much this year that listing it out seems a bit overwhelming at 8pm at the end of the day.

But if you have the chance to be grateful in writing it’s worth doing. Looking backwards on your gratitude enables you to look forward with optimism.

Categories
Biohacking

Day 1409 and Setting Up Red Light Home Automation for Better Sleep

I struggle with some chronic illnesses so biohacking is a hobby. Recently multiple friends have been discussing the benefits of using red lights at night to improve sleep quality.

There is some evidence blue light from screens decreases melatonin production which is why so many sleep hygiene guides suggest using a program like Flux on your screened devices.

Running red light for 2-3 hours before bedtime may help lower cortisol levels and increase melatonin production. Plus it gives your bedroom a fun boudoir vibe so we thought why not try it?

Philips Hue 60W Bulbs

We bought a set of Philip Hue bulbs for the three lamps in our bedroom. They sell their own automation systems to manage your thoughts but we already use Home Assistant from the Open Home Foundation for automation because it allows us to run basically everything entirely locally with no cloud dependence or internet access.

For our existing lighting we use a combo of Lutron Caseta (for built in lighting) and Philips Hue bulbs (for plug in lamps). For the purposes of the red light experiment in the bedroom, we are using all plug in lamps.

For the Hue bulbs, instead of using the Hue Bridge and the Hue App, we use the built in Zigbee radios to pair directly to Home Assistant.

Phillips should be commended for using open protocols and enabling users to use these non-proprietary standards. Interoperability is good.

To achieve the light color changes we wanted, there is a plugin called “adaptive lighting” that automatically color and brightness shifts the bulbs through the day (subject to plenty of configuration options).

In our case, Alex set them to go very red (1000K) while also limiting the sunrise to no later than 6am and the sunset locked to 630p in order to fit into our routine and preferred bed timings.

iPhones have an automatic white balance on their cameras but it is actually quite red at night

The lights mostly work automatically but for when manually control is wanted, there are Zigbee remotes on each side of the bed as well as Home Assistant bridged to Apple HomeKit so everything can be controlled via the Apple Home app or through Siri.

It may sound complicated but there are plenty of tutorials in the open source community to help guide you. As we get more data from our own biometric tracking I’ll be sure to discuss it here and on Twitter.