Tag: Chronic Disease

Categories
Biohacking

Day 1409 and Setting Up Red Light Home Automation for Better Sleep

I struggle with some chronic illnesses so biohacking is a hobby. Recently multiple friends have been discussing the benefits of using red lights at night to improve sleep quality.

There is some evidence blue light from screens decreases melatonin production which is why so many sleep hygiene guides suggest using a program like Flux on your screened devices.

Running red light for 2-3 hours before bedtime may help lower cortisol levels and increase melatonin production. Plus it gives your bedroom a fun boudoir vibe so we thought why not try it?

Philips Hue 60W Bulbs

We bought a set of Philip Hue bulbs for the three lamps in our bedroom. They sell their own automation systems to manage your thoughts but we already use Home Assistant from the Open Home Foundation for automation because it allows us to run basically everything entirely locally with no cloud dependence or internet access.

For our existing lighting we use a combo of Lutron Caseta (for built in lighting) and Philips Hue bulbs (for plug in lamps). For the purposes of the red light experiment in the bedroom, we are using all plug in lamps.

For the Hue bulbs, instead of using the Hue Bridge and the Hue App, we use the built in Zigbee radios to pair directly to Home Assistant.

Phillips should be commended for using open protocols and enabling users to use these non-proprietary standards. Interoperability is good.

To achieve the light color changes we wanted, there is a plugin called “adaptive lighting” that automatically color and brightness shifts the bulbs through the day (subject to plenty of configuration options).

In our case, Alex set them to go very red (1000K) while also limiting the sunrise to no later than 6am and the sunset locked to 630p in order to fit into our routine and preferred bed timings.

iPhones have an automatic white balance on their cameras but it is actually quite red at night

The lights mostly work automatically but for when manually control is wanted, there are Zigbee remotes on each side of the bed as well as Home Assistant bridged to Apple HomeKit so everything can be controlled via the Apple Home app or through Siri.

It may sound complicated but there are plenty of tutorials in the open source community to help guide you. As we get more data from our own biometric tracking I’ll be sure to discuss it here and on Twitter.

Categories
Biohacking

Day 1401 and Detox

I’m sure many a doctoral thesis has been written on the obsession with bodily purity and eternal search to rid oneself of toxins.

I’m not an academic but I was on the original Goop team in the far distant past when I worked for legendary adman Peter Arnell. So I’ve had a lot of exposure to particular purity culture that is modern consumer culture detoxing.

While I had hippie experiences with detoxification and also real ones like mercury chelation (which is a fun story), nothing is as intense as rich white women detoxing. From herbals to enemas to fasts you have a lot of choice.

I am all for the woo woo. The aspiration that if one just exercised enough control over oneself that all ailments could be cured is alluring. It’s also fucked up. Bodies are notoriously difficult to control and medicine is littered with mysterious ailments afflicting saints and sinners.

Alas I’m still tempted by this philosophy. I spent four days in Miami and I feel like a bunch of expensive detoxification treatments would be just the ticket. I’ll probably just sleep it off though.

Categories
Travel

Day 1395 and Not On The Calendar

I am aching from doing too much packing in one day. Somehow a flight didn’t make it into my calendar and I thought I was flying Monday and not Sunday.

I usually take multiple days to pack things not because I’m unsure of my choices or dawdle over it but because the bending and picking up of things is hard on my spine.

I try to do these kinds of activities in 15-20 minute increments with an hour or more of laying down flat to recover.

Presume that packing for women requires extra effort when there is formal wear and cosmetics involved and I need a few hours to dedicate to the effort.

Chop it up into increments and well you can see how it becomes a thing I need to split up over a few days. I don’t think of myself as disabled but requiring breaks to rest my spine probably suggests it.

Alas the work and rest cycle wasn’t possible today as I had to get it all done in one go as my flight is at dawn. I am sure I’ll pay for the strain tomorrow. Which isn’t ideal for flying which is stressful enough without additional pain.

Thankfully it’s done. Now that this is all squared away I am in bed at 6pm and planning to go to sleep as soon as I can dampen the pain. Since I’ve got to be up at 5am a nice long sleep from 7pm seems perfect. And I’ll be adjusted to my new time zone.

Categories
Internet Culture Media

Day 1393 and Babylonian Memetic Death Cults

We call catchy songs “ear worms” but instead of calling catchy ideas “brain worms” we went with Richard Dawkins’s coinage “meme” and I think that’s a pity. Normies find it simple to grasp the term brain work while meme remains coldly academic.

According to this synopsis from Perplexity, Dawkins proposed memes as the cultural parallel to genes, acting as self-replicating units that spread ideas, behaviors, or styles from person to person within a culture.

Thankfully, the extremely online regularly use the term “brain worms” to describe people infected by any number of ideas ranging from the political to the aesthetic. They aren’t good or bad ideas necessarily. I’d include Trump Derangement Syndrome, girls with septum piercings, the uptick in jhanna meditation as flavors of memes that infect different types of minds.

I’m sure I’m infected with at least half a dozen brain worms (hopefully the memetic variety unlike RFK Jr) despite good informational immunity. There are benefits in having hippie parents and media literacy but the occasional infection is inevitable.

Our minds, our bodies, our computers and our networks can get infected with parasitic diseases and carry viral loads. From Covid to e/acc to the Goatse Singularity (safe to click) we’ve had a lot of novel pathogens recently and some of them are even good things.

Programmers and early Internet citizens have probably have more exposure to the modern theory of memetics than most.

Dawkin’s original coinage, while still a helpful theory, has been surpassed by the colloquial understanding of meme as popular cultural detritus that spreads online.

Given Internet network density, smart phone ubiquity, and algorithmic driven feeds, we’ve never been able to spread memes more readily. The topic is particularly interesting where it intersects with artificial intelligence and cryptocurrencies. Make something worth sharing and it has value.

Neal Stephenson’s Snowcrash has a neuro-linguistic virus derived from Sumerian mythology where natural language programs the human mind like we now program computers. It gets used in nefarious ways.

This of course makes you wonder if it’s so easy to make people share ideas how hard is it to make people forget them? There is no anti-memetics division right?

An antimeme is an idea with self-censoring properties; an idea which, by its intrinsic nature, discourages or prevents people from spreading it.

I wonder if my brain worms have made me memory hole anything recently. Given that we have an election coming up seems worth considering.

Categories
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

Categories
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

Categories
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.

Categories
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.

Categories
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.