Tag: Disability

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Community Internet Culture Medical

Day 1440 and The Pain We Won’t Name

Americans are in pain. Literally and emotionally. How that happened isn’t my focus. We are in the middle of a national conversation about the failures of institutional medicine and its relationship to our government. We are treading in deep water and it’s best not to get swept away.

There are many communities that have emerged on Twitter, Reddit, YouTube, GoodReads and elsewhere dedicated to the many paths available to go about fixing the problems in your life. There millions of strong communities of interests, hobbies, courses, and network knowledge that can enable you.

One of those communities is called TPOT. What is TPOT, who is in TPOT, what are its values and what does it believe are all involved and sometimes contentious questions. Being illegible is a big thing.

We mostly agree it stands for “this particular corner of Twitter” which is a loose network of nodes of people interested in applying knowledge they learn across our networked multimedia to their real life.

The experimental “you can just do things” attitude is a big tent. You see DIY projects, tutorials, reading lists, artificial intelligence and coding discussions, fitness and biohacking experiments, nutrition and cooking, meditation and nervous system research, pain management, psychology and emotional wellness and much more. You also see more far out woo woo topics like psychedelics, evolutionary psychology, and many flavors of rationalism and epistemology.

One of the most qualified voices to speak on TPOT might be Brook Bowman of Vibe Camp. In my understanding of her interpretation, TPOT is a memetic virus and once you touch it you are in the topology of TPOT for good.

tpot is this crazy memetic virus where the term itself means so little and is so contagious that you kind of become part of it just by hearing about it

Brooke

This is protective and makes it resilient. The network is bigger than any node and this is a good thing

So TPOT is best understood as a network composed of many interoperable nodes of interests and many layers of engagement. A memetic complex that you become part of on contact. If you read my blog it’s likely have many clear lines to TPOT.

If you like fitness, coding, rationalism, nutrition, or even home improvement well congratulations you are one or two nodes away from “just do things” as a life philosophy yourself and might be a member of TPOT yourself if you talk about it on Twitter.

And this is now some very dangerous semiotic territory as we cope with the gaping wound that is American health and murder. And I am concerned the narratives are going to be heavily fought over territory.

Because it’s easy to dislike a techbro right now. It’s pretty easy to dismiss the group. I can see it now. “Are your friends into this weird sounding acronym TPOT? Have you heard someone say “you can just do things?” If so you need to alert the authorities!”

Of course this sounds funny and histrionic. It’s totally normal to take responsibility for what you can in your life and try out ways of improving your life somewhat.

Everyone is dealing with pain (chronic or otherwise). Being an adult is a set of emotional challenges to manage and most of us do so by making the shocking decision to take action and do something. That doesn’t mean this world is is dangerous. It certainly doesn’t mean murder. It means doing something in your day life like lifting some weights, shipping some code, checking your biometric data, and trying to be a friend to lessen the pain most of us are in.

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Biohacking Chronic Disease

Day 1433 and Pardon The Interruption

I’ve been running around keeping a busy schedule while I’m on the road for a few weeks on the west coast.

I had a number of things I wanted to do today but I’m so tuckered out I have been slowly passing on everything.

My stomach is upset, I’ve got a migraine that isn’t quitting and everything hurts. So pardon me for the interruption in my regularly scheduled posting but I am going to attempt one of those sixteen hours of sleep nights in the hope that any issues can be fixed with rest.

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Aesthetics Travel

Day 1426 and Cheap Nails

I am in Los Angeles for Thanksgiving week. I decided to get a pedicure yesterday. My logic was a larger city would provide better quality at better prices than I can get in Montana so I should make time to get it done here rather than at home.

Bozeman, despite being a college town that doubles as mountain resort town, has relatively limited options for cosmetic services at lower price points.

You can get traveling elite Yellowstone Club services quite easily. We’ve got top notch estheticians, massage therapists and even a tier one city dermatology practice.

But if you want a $30 basic pedicure you are shit out of luck. If appreciate the lower end of market price services and the value of regular cheaper grooming this isn’t Bozeman Montana isn’t ideal.

I have a little trouble with my spine so I appreciate being able to pay for help work task that involves so much bending over. I went on Google and Yelp for some shop triangulation. Being on the bougie West side of town meant locating a salon that was well rated but not fancy was a breeze.

What I did not expect to find was that nail salon had moved almost entirely to gel manicures. I don’t necessarily want that kind of long wear of a gel as it is harder on the nail bed and requires a fuss to get it off.

They only had a handful of regular colors as opposed to the giant wall of OPI or Essie. I picked the one basic pink which when applied I fear is best described as baby hooker pink.

It’s somewhere between a baby shower pink and a trashy mid-aughts white girl pastel attempting the era’s iconic milky Essie Ballet Slipper pink. I’d post a picture of my feet but that seems weird. Hopefully no one has cause to look at my feet as I’m a little embarrassed by the color.

Categories
Emotional Work

Day 1423 and Reading The Riot Act

One of my friends recently fed the entirety of my daily writing experiment into Google’s NotebookLM podcast generator.

We both like to tinker with new artificial intelligence features and I have got a large training set with lots of tagging.

The synopsis it kicked out of two chatting AI hosts makes it sound like I have written a New York Times bestseller on the cultural and emotional adaption in the Great Weirdening.

The smoothing function of compression makes me sound way smarter than I think my daily output might suggest. The aggregate quantity has a quality all its own.

So naturally instead of sharing those wins with you I’ll show the emotional underbelly. He asked it to generate my blind spots and boy did the AI read me the riot act.

Beware the AI knows you better than you know yourself

I don’t know if I am blind to these as I see them as faults. I can easily go down rabbit holes and overextend myself. I worry about my physical capacity constantly. That’s why it’s such a clear theme in my writing.

I definitely recommend this as an exercise if you have enough personal content to feed into the generator. Seeing clearly into your blind spots gives you a chance see around the corners of your own life. It’s not quite the same thing as therapy but maybe just as useful.

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
Aesthetics Travel

Day 1397 and the Jungle

I’m in Miami for the week to attend a gathering. October is as fine a time as any to visit what is otherwise a very humid and hot climate. I’d prefer midwinter but I’ll manage with late fall.

I went to eat lunch at a friend’s home. Even with fans and very breezy weather I could still feel the humidity doing battle with my body. Ancient trees covered in moss kept off the sun as best as they could.

Welcome to the jungle

And still even a little bit of movement is enough to trigger sweating in such a climate. Which just leads to itching and inflammation so I’m being careful to not get myself into much trouble. I’ve got my hats and sunglasses and sunscreen and I move slowly.

I understand why the whole town has a hospitality aesthetic that the done up in whites. Anything to keep the sun from overheating you and let the breezes flow.

Whites on white in our room

If you are in Miami let Alex or myself know. We have a conference that you may be attending as well so we’d love to overlap. I’ve proud some amusing outfits and all kinds of cosmetics I hope I have time to apply and enjoy.

Velvets, pinks, and prints for the adventurousness
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
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
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.