Tag: Illness

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Biohacking Medical

Day 1375 and Titration

My joyful excitement over finally wearing a bathing suit I’d never worn? The peaceful swim in the salty sea ended in disaster within just a few days.

On Friday the allergic and autoimmune symptoms were so bad I took 5mg prednisone. On Saturday they were no better and I upped the dose by 2.5mg to 7.5mg. I moved forward my absurdly expensive biologic injection by a day. I haven’t been able to convince my health insurance to get them more frequently so it’s a risk.

I’m doing better today. My pain is abated to an almost unnoticeable level at a 2. That’s rare for me. And it makes me want to rush into as much work, chores and activity as possible just to enjoy it.

I’m typically working with a 5-6 level of pain on any given day but I can work (with medication) up to a 7 within reason. Past 8 I’m in bed and struggling.

The downside is of course that prednisone just sucks. It messes up your appetite. You balloon up almost instantly with side effects like moon face. And your body develops a dependency quite rapidly.

Titration off of steroids like prednisone require a steady and slow discipline so you don’t get “blow back” as it can make your symptoms even worse.

I’ll have titration for a few days ahead of me. But maybe I’ll get to enjoy the lack of pain. Already I’ve cleaned for an hour, done laundry, checked off a number of small “to do” list items and I am blessedly free of the exhaustion that comes from working with moderate to severe pain that is my normal daily experience.

I was sent a study in the journal Nature about a team who used CAR T therapies to achieve total remission in 3 patients. And I see hope on the horizon.

One woman and two men with severe autoimmune conditions have gone into remission after being treated with bioengineered and CRISPR-modified immune cells1. The three individuals from China are the first people with autoimmune disorders to be treated with engineered immune cells created from donor cells, rather than ones collected from their own bodies. Nature

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Biohacking Medical

Day 1367 and Proper Names

My mother always insisted pharmaceuticals and supplements be called ny their chemical composites rather than a company’s brand name for it. She believed medicine shouldn’t requiring marketing & branding.

Instead of Benadryl it was diphenhydramine. For a headache we used ibuprofen not Advil. Acetaminophen was the proper name not Tylenol.

She taught me what went into popular brand name medication like DayQuil and I learned the ratios of guaiphenesin to dextromethorphan. Always take the minimum viable dose she’d say. And if I only had a cough I didn’t a fever reducer.

America is lucky to have a thriving generic medicine market. If you are a Costco shopper you can buy thousands of tablets of every crucial over the counter medication at just a few cents per dose.

There is a new series from healthcare publisher Trade Offs about issues in generic medicine manufacturing. It’s well worth your time getting to know more about how we came to have generic medicine (the Hatch-Waxman Act) and where the weaknesses are in the business of supplying these crucial medicines.

Take the time to read more on the issues as it’s been forty years of struggle for access and safety and we are experiencing shortages and supply chain risk that is unprecedented.

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Aesthetics Culture

Day 1366 and Interior Life

For a woman raised in the Rockies and settled down in Montana, you’d think I’d be more outdoorsy. And yet I can spend days at a time in just one room with little trouble and even enjoyment.

Even with that wholesome “National Parks” backdrop, I was always a bookish and imaginative child. I was once derisively described as having “a particularly pictorial interiority” by a babysitter.

I don’t have the energy I once did as a girl when I’d spend my time at the barn and loved camping & hiking with my Outward Bound going army surplus shopping Eagle Scout achieving band of hippie environmental teens.

Setting aside the humor of a toking Austrian anthroposophy student projecting onto an elementary student, I am a long winded introvert who writes a lot. They really nailed me.

When the pandemic forced us all inside I had no problem with being home. I did a full three months without setting foot outside the apartment.

There is, of course, an entire culture of women’s writing dedicated to the interior lives of the home and within that a multitude of stories of illness.

As a choice I make for health & preference, it’s a far cry from cultures where women are forced indoors. I’d prefer to be outside more when circumstances allow. They haven’t for quite a few days. But it’s ok, I like being an indoor cat.

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Medical

Day 1357 and Light It Up

It’s been a weird couple of days for me. It’s been a weird couple of days for just about everyone. At least all of my electronics are intact and no one has tried to kill me right?

I was hoping I’d be on the mend for this pneumonia like thing I’ve had for a few days. I took a Z pack on advice of my doctor. It’s a bit better but I’m still coughing. I’ve got my voice back at least. I keep hoping better medicine will arrive but I’m not getting my hopes up.

I’m going to lay low. I’ll keep it short. Maybe tomorrow I will have more to say and better lung capacity. I’ll keep it light. Lightening up. It’s better than lighting it up.

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Medical

1354 and Better Access

I get some comfort when I see someone with substantially more resources than me use the same tools as me. Bryan Johnson tracks his sleep with Whoop. So do I.

You’d think there would be more variance but largely the tide of turning health technology into consumer technology has been to increase access. If you are interested in building better health habits we can use the same tools.

I am so grateful for the access I have to understanding my own body. It used to be considered quite rude to question doctors but as with any profession some are better at it than others.

Thanks to the work of the open internet and the tooling of artificial intelligence I cross check an astonishing amount of medical information. With a little work and the right questions and intelligent person can do basic differential diagnostics using Claude and Perplexity.

Networking together public papers, handy upper funnel content strategy of the Mayo Clinic, and the database of Drugs.com has been a real boon to involved patients who want to double check things.

Be skeptical of credentialism and gatekeeping in medicine. While everyone wants safe and responsible medical care there are plenty of well entrenched interests that don’t want you to do more for yourself. We deliberately keep the population of doctors limited in America. Professional organizations exist to protect themselves. But everyone deserves the tools to be healthier.

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Medical

Day 1352 and a Dry Cough

I don’t know where I picked it up but the back to work and back to school season seems to also mean back to petty respiratory infection season. I’ve got a bad dry cough that is so intense I feel like I pulled a muscle in my left intercostal rib area.

I don’t feel terribly sick and all of my biometrics are within normal range. It’s just this horrible rough dry cough that seems to have tweaked my side so badly I’m contemplating wrapping my rib cage with a bandage.

I haven’t had a broken rib in sometime but this is as close to the feeling as I recall. I’d lost my voice a bit yesterday (been doing a bit more taking than usual as it’s fall) and pushing through it might have been a poor decision.

The other possibility is that the left intercostal pain is related to my inflammatory condition and it’s moved from its normal residence in my spine. I have very low pain in my spine at the moment so anything is possible.

I’ll lay low this weekend and hope it goes away on its own. Maybe the antitussive cough syrup will provide some relief.

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Medical

Day 1331 and Reboot

Yesterday was a bad day for me physically. Unexpectedly awful pain caught me off guard. I went to a doctor today. It’s always hard to say what anything is about with bodies.

I am sleeping all of it off today. I figure no matter how overwhelmed one might be physically, if you can sleep it’s bound to help.

It’s two days in row where more than the basics of putting down a few paragraphs is a struggle. If it comes to three days I’ll probably have to dig in on it. I don’t want to write nor do I have much to say. I want to feel better.

Categories
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.

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Preparedness Reading

Day 1307 and Smoke Dusk

I’ve been having some unwelcome negative emotions over the past few weeks of political turmoil. It could be a function of long Covid or some variant of season affective disorder. I got introduced to an even worse environmental trigger.

Wildfires burning both in state and across the west gave us low cloud cover. You could barely see the next road let alone the mountains. The whole day felt like dusk. A long dim suffocating presence that felt like it would resist nightfall. It was smoky perma-dusk day where neither horizon nor blue sky could be seen.

“The sky above the port was the color of television, tuned to a dead channel.”

William Gibson Neuromancer

Probably his most famous piece of prose, this introduction manages to evoke something beyond the literal color and into an expansive image of otherworldly nothing.

He apparently “imagined an ancient TV … that grey/ haze as the tube warmed to a channel that was ‘active’, but sending no programming” which was “the black and-white video-static of my childhood in mind, sodium-silvery and almost painful”

The pain of a sky blocked out by smoke from wildfires even at high noon is unsettling and uncanny. It’s hard to feel right when what you see is so destructive.

We are safe inside the house with air purifiers in every room. The Conway HEPA filter went from one crisis to the next as a pandemic purchase that works on pollution too. The custom software that Alex uses to manage our smart home is showing perfect interior quality as the purifiers run day and night. Outside the AQI score was 118 “unhealthy for sensitive individuals.”

We’ve got a few more hours to sunset but a thunderstorm might be moving in.

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Biohacking Internet Culture Startups

Day 1297 and Crypto Libertarians in the Age of Cyperpunk Anarcho-Tyranny

We are living in the past’s version of the future. The Cyperpunk I read in my youth is now the stuff of my daily life. It’s not as sleek as in fiction but it’s hard not to feel like it’s William Gibson’s world and I’m just living it.

The clubs looked a little sleazier as we escaped the aughts but we had a renaissance in technical tools for producing culture. Digital music and multimedia have exploded entire social media economies. Could Vernor Vinge be right and our economies will turn to creating data to train for the singularity?

We are only now getting Idoru but we are veering towards Burning Chrome. Half the anime avatars in accelerationist e/acc chats are wearing Mirror Shades and everyone watches for crypto rugs. But we are getting our Mt Gox Bitcoin back right?

What about borderless corporate worlds and mass scale surveillance identity? That’s here too. When William Gibson wrote “Disneyland with the Death Penalty” I wonder if he knew it would be the nexus of the network state debate?

I can turn on club kid techno from 2002 and look at a reality in 2024 and its aesthetic is pretty close to the details Jonny Mnemonic. A global pandemic that affects the nervous system of those infected which was accidentally released from a lab.

Johnny Mnemonic movie poster.

We’ve even got the LoTeks in a Luddite rebellion against a world connected by dubiously transparent artificial intelligence owned by actual Zaibatsu multinationals with more power than nation states. Fact and fiction spinning hyperstition better than Nick Land ever dreamed.

The vulnerability of our entire world to our digital networks was made dramatically apparent yesterday when Crowdstrike took a hot knife through the butter of corporate infrastructure and left us with blue screens of death.

It’s not real but it could be

Snowcrash and Crash Override? It’s better. We got amazing memes and elaborate fakes of the Blue Screen of Death. It actually did suck for airlines and banks because regulatory capture is the stuff of systemic risk.

And lest you think we’ve got no biohacking in this Cyperpunk world after the pandemic we have a renaissance in systemic & holistic approaches to medicine. Suddenly everyone is aware of the risk in agribusiness. Seed oils is normie stuff. Instead of turning Luddite the Danish invented advance metabolic medicine to cope. Everyone is on GLP-1 agonists.

Mix in the rise of nicotine and THC and you’ve got a national post prohibition bloom of folklore cures whose research has been suppressed by pharmaceutical companies and regulatory bodies alike. Conspiracy? Maybe but just the sludge of industry.

When I look at my own work I see the future arriving. We fund decentralized compute and marketplaces for inferences. We fund open source database software. We fund multi-sigs for hyper transactional blockchains. We fund nuclear fission that pulls its materials the sky.

And in that all of the is our founders are global citizens who have to manage anarcho-tyrannical borders with visas controlled by incompetent governments and live through the geopolitics of wars fought with drones and propaganda. The future is already here. It’s actually pretty cool. Just watch out for nervous system tics.