Categories
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

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
Community Preparedness

Day 1469 and Prayers and Hope

My in-laws live on the west side of Los Angeles as well as one of my portfolio founders, significant extended family and many dear friends including one of my closest and best friends. I am afraid for all them as the fires in Pacific Palisades has rapidly spread.

Please pray for the city of Los Angeles and her people as these fires rage. A dry year with little rain and unpredictable Santa Ana winds have led to a precarious situation.

Officials warned of devastating losses as the main blaze raced through the affluent Pacific Palisades neighborhood. The fast-moving fire spread across nearly 3,000 acres and was still 0% contained early Wednesday, according to the Los Angeles Fire Department –WSJ

A professional colleague known well to the venture community Mark Suster is quoted in this WSJ piece as he and his family were evacuated. I fear many more may be in his position. I pray their homes are not lost.

I have an especially strong emotional reaction to these types of rapid urban firestorms after living through Boulder’s Marshall Fire two years ago. Over three thousand homes were lost. It was devastating to my hometown and it is still rebuilding three years later.

I advocate for preparedness as both an individual and a community. I have lots of posts and media on the top if you are interested. When these tragedies strike, show up for your neighbors and your family by preparing so that when the worst happens you can be at your best for people.

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 1464 and Which Information Island?

It would be helpful for most media readers to understand the history of the news business and its relationship to war and finance.

For all the standards and ethics and best practices we expect from professional newsrooms (and they do have conduct standards), the history of media isn’t a clean narrative America went to war thanks to Yellow Journalism in the Spanish American War. If you think the Pulitzer is a badge of merit wait till you learn its history and financing.

You have probably lived through multiple media scandals. Millennials remember the neoconservative “weapons of mass destruction” story thanks to notably terrible editorial decision at the New York Times.

When someone says you are in a media bubble or on an information island, recall that these systems made up of people with varied interests, ambitions and aims.

News

American Surgeon General Calls for Cancer Warning on Alcohol

TechCrunch grudgingly says the AI Bloomers beat the delusional AI Doomers

Essays

An Nvidia researcher Jim Fan tweeted about blog post from the late Felix Hill on 200B weights of responsibility inside the work of building AI. The stress of knowing the billions of weights and bias that make up artificial intelligence that will bend our lives for both good and ill is no small thing. The thread has many beautiful comments.

Vinay the founder of Loom is in the thick of figuring life out after success and it’s brave of him to share.

Applications and Services

AskNews has an interesting set of display options for news types and bias and sentiment I’m considering purchasing and testing.

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
Chronicle Emotional Work

Day 1462 and Year Five Begins

We aren’t quitters” could be a tagline from a sports movie, a speech about the American people or your parent’s family philosophy.

Fortune favors those with fortitude. Grit sums up entire pedagogies of successful education and institutional cultures.

And here I am, one day at a time, continuing to log my thoughts for anyone who might care to read them on this public journal.

When I first began I thought the experiment to write every single day I thought would last a month. Then I thought maybe I could make it to a full year. Now I’m unsure if I will ever want to stop. I’m not even sure I know how to stop?

I’m less sure the narrative aspects of this log are as crucial to me as when I first started . I wanted to improve my capacity to write regularly so I set out to practice that creative process.

Having achieved my goal to write and publish each day, it may be time to evolve this narrative into a more traditional blog format from the past.

We used to include links, asides, and unrelated tidbits alongside narratives and storytelling in old school weblogs. I may try to try to include tidbits of what I am seeing each day as a way of sharing my context and inference process.

If the mood stokes for essays (as is my usual habit) that’s fine and if the mood strikes for a log of influences that is fine too. Year five has permission to be whatever it likes.

Current Reading

A gift link to a New York Times article on the China craze and the fifth and likely final generation that carried a dish set through a century only to find the status symbol it once represented is long gone.

Hannu Rajaniemi an entrepreneur and science fiction author has a new book Darkome about a world where with a corporate giant who invented a mRNA vaccine wearable and an underground of biohackers working to keep those vaccines and edits available online not available in America but thankfully I got a copy in Europe.

Interested in the “Don’t Die” movement? Time to learn all the ways cells die.

A history of learning how cells die

Why do we know so little history? Bogus airport bestsellers are one culprit. Or a bestseller anyone who took an AP history course “A World Lit Only By Fire” is mostly bunk. Turns out that’s common.

“Style is a magic wand; everything it touches turns to gold.”

– Logan Pearsall Smith