Tag: Disability

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Biohacking Chronic Disease Medical

Day 1483 and Trending Up

I let myself get a little shook up by some poor health news early in the month. I’ve been pushing it physically all through 2024 as let’s be real it’s an exciting time. To fully capitalize on that acceleration we are all more focused on improving our health.

I’m taking action and optimistic about where we are headed with improvements in healthcare. I was able to rapidly iterate through options and set up surprisingly effective new treatments.

As we’ve work through the significant impact of the pandemic on our understanding of post viral illness and autoimmunity, we’ve had a more systems driven approach to testing interventions beyond pharmaceuticals reach more people.

Not that all pharmaceutical interventions are bad obviously as I’m lucky to have interleukin inhibitors in my life. I was able to find a new option with my doctor thanks to help from Claude and Perplexity.

And this progress is happening across all areas of medicine. I am also incredibly bullish on the benefits of GLP-1 inhibitors and their next generations. Inflammation and metabolism are intertwined in ways we can control barely articulate beyond “mind body connection” and yet we are developing the vocabulary.

I enjoy strange adventures in the future now. I am going to be experimenting on my body as it helps me understand not only myself but the evolving opportunities in investing. Even science fiction is excited about biotechnology.

The problems I am solving for myself teach me how we will allocate resources across many industries. The energy required to power artificial intelligence and the chips required to run those models will be pulled forward by our desire for solutions to living healthy lives

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Biohacking Chronic Disease Medical Uncategorized

Day 1476 and Don’t Stop Till You Get Enough

I’m thrilled to see that the very week I began my hyperbaric chamber oxygen therapy that we’ve had multiple experiments and data come in.

Bryan Johnson helped answer a few questions in my set up so I was delighted to see he himself was just wrapping up a major experiment with HBOT.

Step into my hyperbaric chamber courtesy of Bryan Johnson’s Twitter

Earlier in the week Harvard professor David Sinclair tweeted a thread on with links to the newest scientific literature on treatment. Stuff with names like Activation of SIRT1 by hyperbaric oxygenation promotes recovery of motor dysfunction in spinal cord injury rats

Esssays

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.

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Biohacking Chronic Disease

Day 1475 and Equalizing Pressure

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.

Just don’t die while inside the chamber

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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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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.

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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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Aesthetics Culture

Day 1448 and Overhead Lighting

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.”

I was delighted to read this synopsis of the overhead lighting hate debate in the Walk Street Journal. They quote a few psychologists and photographers who sum up the debate as diffuse lighting is more relaxing while cool focused lighting is better for concentration.

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.