Tag: Disability

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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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Medical

Day 1373 and Anaphylaxis Maybe

I don’t know what I did but I’m like 50% of the way towards an anaphylactic reaction. I was exposed to salt water, a sunscreen whose ingredients I didn’t vet as carefully as normal (foreign language) and a few environmental factors that could potentially have contributed.

I’d post a picture here but it’s not something I’d relish having a permanent home on the internet if you feel me. Imagine bee stung lips but not in the sexy cosmetics way. Then apply that level of red inflammatory tissue to my entire face, chest, arms and other delicate areas.

I sucked back 5mg of prednisone which I loathe but I’m in no position to be picky. I don’t have an epi-pen with me but my throat isn’t closing off so it’s probably overkill.

A cortisone shot would hit the spot though I’m sure. I also took 50mg of Benadryl. That’s why I’m posting so early in the day as it’s hard to say if this pharmaceutical combination will result in me having Trump on steroids energy or passing out from antihistamine energy

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Emotional Work Politics Reading

Day 1371 and Against The Tides

I don’t swim very much as an adult but I grew up in an era with mandatory swimming tests (even at university).

I was lucky enough to not only learn to swim in the Pacific Ocean but in Colorado I spent a lot of time in our many creek, rivers and lakes. Freshwater has its own appeal and I’ve seen the tides work on the Great Lakes. But little is as magical as the buoyancy of seawater.

I’ve struggled with not having swimming and the joys of warm weather and cool water with some of my autoimmune challenges. A bathing suit I’d never worn came to represent some of that loss.

But today I was able to take a swim. I put on a bathing suit and was able to casually swim with just enough force applied to steady myself in a comfortable place against the increasingly forceful tide coming in. I felt like I’d won even if it was just for thirty minutes. I enjoyed a nice healthful thing in between the chaos of a very busy moment.

I’m not much of a Fitzgerald fan and but the joy of finding the limitations in one’s life as you mature is the relatability of feeling the weight of a one’s years as you push against the tides.

So we beat on, boats against the current, borne back ceaselessly into the past

So many decisions cannot be undone and yet we steady ourselves against forces much bigger than we are. Pushing against some of the vastness of a sea while relaxing into its much bigger whole is quietly humbling

I feel good about pushing against the vastness but also not being so sure about my own place in much larger forces. It’s no wonder man yearns for the horizon.

I took a shower and immediately went back to work. But it was nice to be a human doing a human thing while all of this is going on around me. I held my own against the tides. And I intend to keep doing.

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Emotional Work Reading

Day 1361 and Temporal Distortion

I dislike how illness messes with your sense of time. One of the themes of the pandemic was how it affected people’s perception of time. We measure time but our experience of it is harder to pin down.

The COVID-19 pandemic significantly distorted people’s perception of time. Many experienced a disconnection between objective time and subjective time, often feeling that days blurred together or that time moved unusually fast or slow.

Perplexity Recap

Temporal disorientation feels as disorienting as spatial disorientation to me. Getting lost in your own personal time fucks with the reality of consensus reality time passing.

Every time I have a couple of sick days in a row I am fearful. You can reorient if you are lost on a road but the world moves even if you don’t. How do you reorient yourself to time?

We humans live forward. If we somehow find other ways to experience the fourth dimension I’d question if we remain human through that. We understand time dilation but living with time as a concurrent dimension to space and having it be mutable warps the mind a bit.

It’s a rich space for science fiction for a reason. Edwin Abbot’s Flatland is a classic of geometry. As a child I was fascinated by the idea of a tesseract in A Wrinkle in Time. A hypercube is a heady concept for a tween.

All this is to say, I was outside some slipstreams of time and I am slipping back in and seeing if I can flow with the tides.

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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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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.

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Biohacking

Day 1284 and The Average Person

I am in the middle of a “don’t try this at home” biohacking experiment in which I am using a low dose nicotine patch to treat my week seven Covid malingering. A quick overview of the method of action.

Nicotinic acetylcholine receptors (nAChRs) have been proposed as potential therapeutic targets for COVID-19. Research suggests that the SARS-CoV-2 spike protein may interact with nAChRs, potentially influencing the disease’s pathophysiology.

nAChRs

I am doing alright with it. I was wary of keeping the patch on all night long (I am very sensitive to stimulants such that I won’t drink caffeine past 10am) so I removed it at about 5pm. That may have been a mistake.

Yesterday my Whoop recorded physiological stress. I wasn’t coughing, I had more capacity for exertion, and I felt generally less exhausted.

But I didn’t come down easily for sleep. I ended up taking a number of anti-inflammatory medications as well as an Ambien. My heart rate was stable but I felt “up” which I don’t care for at night.

And I did not wake up to good news. My HRV absolutely tanked. There are lots of confounding variables here in that I got good restorative sleep (medicine induced surely) but some strain has clearly been too much. 40% down isn’t a rousing endorsement.

I am also noticing a lot of chatter around addiction and whether or not it’s responsible to discuss these things. The fear that the average person is in fact prone so addiction and will have adverse affects. Which I’m sure is true. I don’t think normal people should take unnecessary risks and it’s good to have the minimum viable dose be none at all.

It’s wise to remember that I am not at all living in average circumstances nor do I have average medical conditions so I am not necessarily who you should be looking to for health advice. You should do the basics like eat more protein, lift heavy things, sleep an adequate amount, be in the sun and move around, and manage your baseline health metrics first.

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Chronic Disease Medical

Day 1252 and Maximum Health Protocols

I must have wanted some early 2022 vibes as my current “Covid infection after a traveling to a crypto conference” feels aesthetically familiar. It still feels like we are in the same long now of Empire’s End but this time with more geopolitical risk.

I can’t think about most of this at the moment as I am officially on my Maximum Health Protocols which is a mix of expensive piss and biohacking basics with a hint of woo and a triple helping of pharmaceuticals.

I still feel like shit but my hope is that dedication will save me from long post viral complications. I’ve worked too hard on my health to let some stupid inflammatory Covid event get me off track.

Covid isn’t any more worrying than most triggers to my overclocked autoimmune system but the additional pain of the inflammation isn’t doing me any favors. Does anyone else remember cytokine storms? To quote South Park, I member

I dislike the brain fog and exhaustion as it feels like writing about illness has become boring. I’d rather be going on tangents and rants but I’m stuck linking to posts recommending vitamins and sleep. Probably a sign that I love my work that my irritation is this strong.

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Chronicle

Day 1233 and Heat

I have been enjoying the mild weather of May. I’ve not had any extremes which is a sort of pleasant surprise. Climate and weather intersect poorly too often these days.

I was explaining to a mutual how we’d settled on Montana to buy land and much of the calculation was about the pleasures of a cold, dry and mountainous climate. It’s sunny without much in the way of humidity which makes for enjoyable winters even when it gets cold.

I am not much of a fan of humidity. It hurts my joints and reminds me of my ankylosis. I’m much more prone to trouble with inflammation when it’s damp.

Whenever I encounter a coastal climate I struggle a bit. Others may love a riviera but I’ve never found one I liked. I’ve been to a reasonably diverse array from San Francisco to coastal Mediterranean and I can do without.

The weather is however about to change. Soon it will be the season of air conditioning. I’ll be going through Texas for a conference at the end of May. I’m not looking forward to the heat.