Category: Chronic Disease

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Biohacking Chronic Disease Medical

Day 1473 and Sunday Slumber

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.

News

A bear steepening or selloff of longer duration bonds is freaking markets out. The WSJ thinks maybe you should take the other side of the trade. Knowing what government will be functional and fiscally stable in 30 years is a hard bet for anyone to make.

Remember GameStop frenzy trying to mess up Steven Cohen and his hedge fund Point72? Well he beat other funds with 5 billion in profit this year and increased fees. But diamond hands are forever.

Trends

Disaster girls are the new professional girlfriend.

Nuclear energy is making a comeback according to Bloomberg. I’ve got an SPV for you if you are looking for early stage projects. HMU on DMs and I’ll send you along.

Luxury is tanking so maybe cater to older shoppers with money?

Reading

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

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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

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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.

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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.

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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.

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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.

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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.
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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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Chronic Disease

Day 1341 and Trade Offs

I enjoyed a long weekend mostly offline and with a group of interesting people. I enjoyed the extra elbow room of mountain remove as much as I enjoyed the atmosphere of a purpose driven community retreat amongst exceptional individuals.

I am however quite tired from the exertion of it. The danger of using a long weekend for anything that requires exertion from me feels ever present. I have so little room for error, and even with keeping my participation more limited than almost anyone else, it was still more than I could handle.

I even left a little early so I could have a full day at home without work to recover. I can feel my immune system overreacting and hope that this will be better by tomorrow. Anytime I feel flare symptoms I naturally get nervous. And frankly I’ve got a busy week ahead of me so I can’t afford needing more recovery time.

The busy season kicks off in earnest tomorrow and I feel sad that in reaching for a more demanding schedule to experience an important gathering that I’ve hurt myself in the process. Not going hurts in quite a different way. There is no winning with chronic illness just trade offs.

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Chronic Disease Medical

Day 1330 and Unexpectedly Awful

I’ve been on a very steady health trajectory for the last six weeks or so after I kicked my lingering Covid symptoms from an infection I picked up at the beginning of the summer. Alas today I found myself with a significant pain flare.

I can barely focus on simple tasks like writing the pain is so forceful. Usually I have some warning with pain as it’s a symptom of an autoimmune inflammatory condition. If I over stress myself I’ll have consequences a few days later just like a regular person.

But today I went from working out to flat on my back in bed taking the highest doses of medication I’ve got. And I still at a 7 or 8 pain wise. I don’t quite know what to do about it expect as I’m not comfortable taking more medication.

I’m hoping it’s an anomaly and I’ll feel better tomorrow. I wish I could provide a better accounting of the sudden misery. But honestly the pain is so bad this is the best I can manage. Please no one worry as I don’t have the capacity to respond right now. I just can’t think clearly enough to write about anything but the pain so I’m stuck with chronicling it. And I’ve got a habit to maintain here where I write every day.