Tag: Biohacking

Categories
Medical

Day 553 and Itchy

Pollution in the air, chlorine in the tap water, and overflowing filters on struggling air conditioners have left me an itchy mess. Not all parts of European have clean air or water as it turns out. I’m on the Ionian Sea and let’s just say the history of close economies and socialist strong men have left a legacy of infrastructure underinvestment.

My eyes look like I’m high as a kite. I’ve got angry raised welts across my arms. I have a lymph node that got backed up and is now the size of a marble under one armpit. A few of the hives have struggled to heal over and now require antibiotics. I love needing a course of Doxycycline on the road because a sore couldn’t fight off some exotic invader. No wonder they put enough chlorine in the water to scent an entire Olympic size pool. It’s clearly not enough.

Travel has always been a challenge when you are disabled. The indignity of finding yourself with seeping weeping yellow teardrops isn’t very relaxing. My travel pharmacy is working overtime as I carefully mix doses of Benadryl, Hydroxyzine, and Cortisone creams. And my travel cosmetics simply cannot fix the deep sunken blue eye bags that have developed from rubbing in antihistamines and spritzing in eye drops.

I really hope that no one at customs decides to get too curious about why I look so utterly fucked. I’m not entirely sure “I’m sensitive to pollution” is that believable to someone for whom this level of irritants is normal.

In less than a month I’ll be moving into the homestead in Montana. I’m dreaming of the clean air and sparkling rivers. I hope I can stay out for sometime. If I never have to leave “the last best place” on earth I’ll be happy.

Categories
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

Categories
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.

Categories
Travel

Day 524 and Low Recovery

I’m on my way to Austin Texas today. Most of yesterday got eaten up by various preparations to be on the road. I’m scared for this trip as Texas hasn’t made cannabis legal so a core part of my physical stability regimen from my physician can’t be brought with me if I want to stay on the right side of the law. I’m terrified of Paxton the incredibly corrupt attorney general.

I did a bit too much yesterday in preparation for travel and unsurprisingly my Whoop and Welltory are flashing red warning signs. I struggle to sleep before travel because of the anxiety and no amount of magnesium, melatonin, quiet reading and essential oils was going to get me down. Even Ambien was like yeah girl your heart rate is crazy.

A poor set of recovery metrics from Whoop

I’m hoping the flight is easy and I get a good night sleep once I’m in Texas. I’d like to be in the green for tomorrow as I’ve got a few little things to finish in preparation. But my basics biometrics are still so bad a 45 HRV is considered good as I think I’m still in a long post viral thing from May.

The Texas heat is going to quite extreme unfortunately. I’m skeptical all go outside for any longer than it takes to get a cab. I brought a bathing suit but I am not sure frying by the pool will do me any good.

A weather forecast for Austin Texas showing a string of over 100 degree highs for a week.

I’m much more concerned about Texas’ notoriously unstable power grids. What if it goes down while I’m there? Will my Texas prepper friends take me in? Will the hotel be on a generator? Is downtown Austin likely to be restored quickly? What if it’s a cascade event and nothing can be brought up for days like their last major grid event?

I’ve done my best to set the lowest possible expectations for being able to meet up with me socially. Which is a shame as conferences are for networking. My DMs are packed with excited DAO folks trying to get my attention. Meanwhile I’m not even confident I’ll leave the hotel room for anything but my own talk and one meet up with a long time friend whom I’ve not had the chance to be with IRL.

I’d like to do more but so many factors are combining to make me extra cautious about obligations. There are too many potentials for a cascade failure and I want to give a great talk so I’ve got to save my energy for that. I’m not worried about being good for the talk.

I’ve got an incredible gift where I can muster all my focus and energy even when extremely sick. I’ll use every last drop of it to meet my obligations. No one will be able to tell I’m sick. And then it’s entirely possible I’ll crater for days. My autonomic nervous system is very sensitive. It’s a blessing and a curse.

I’d you absolutely must find a way to meet with me (and sorry pitching me IRL might not be in the cards but DM and we will chat) I may try to host some folks at my hotel suite. If you are an actual friend of mine and can respect the disability situation maybe we can make it work. But no promises. Which of course my actual friends will understand so open invitation and such.

Categories
Biohacking Medical

Day 522 and Tracker Jacker

I started an experiment with one of my tracking apps called Gyroscope at the beginning of the year. I took pictures of every single meal. For $150 they analyzed all of my meals assigned me a virtual coach to help me improve my total health scores across all categories including food, exercise, sleep and mood. A few days ago my husband physically took my phone away from me and canceled it. The experiment was a failure and it was it Gyroscope’s fault.

Personalized healthcare is a bit of a noble lie. They do give you advice that is somewhat personalized to you as long as your body is within the baseline of what we recognize as healthy. If you are within one standard deviation of the mean then it works great. These tools improve your health. Just remember most of our baseline data is from healthy, young, white, men. This isn’t a woke thing. That’s just the population with the most data.

It’s hard to give someone like me health advice. The basics are designed for otherwise healthy people that need to improve their activity, weight, sleep, and basic nutrition so they don’t become sick in the future. Maybe their biggest issue is being a bit overweight and sedentary. Most people do in fact need to move more and eat less and go to sleep on time. Chronically ill people, or those coping with an acute viral infection, still need to eat good nutrition but beyond the basics it gets more complex what we should recommend.

The coaches at any health app I’ve ever used have kept trying to give perfectly sensible guidance about activity and nutrition quality and lowering stress levels. I am sadly an extremely weird edge case so shit like walk more can actually be bad for me sometimes. Sometimes doing absolutely nothing is actually what someone with my medical history needs. And tracker apps have a tendency to go berserk when I need two or three weeks of bed rest. They go full red alert trying to make me get some exercise when my doctors are tell me any exertion is bad.

The straw that broke the camels back on the $150 a month experiment was getting influenza in May. It completely imploded all of my metrics. As a serious viral infection tends to do. I couldn’t get in any steps as I was basically bedridden. My food intake got weird as I was in Montana with friends and house hunting when I got sick. I had one perfect week of high protein and vegetables and then as I got sicker and sicker it was anything I could be coaxed into eating. There were two meals of milkshakes from Five Guys and that was considered a lucky break. Coughing and exhaustion sometimes means sipping a high calorie frozen dairy product through a straw is as good as it’s going to get.

As my metrics got worse from the flu and tracking food become a pointless exercise, I gave up on even trying to walk my very nice coach through it. There was nothing to be done on assigning me any health activities for weeks. I couldn’t exercise. Meditation did nothing to improve core metrics because I was fighting a massive infection. My sleep was shit because again fighting an infection. My nutrition was hit or miss as my throat hurt and my stomach struggled with new medications.

The renewal snuck up on me. I had wanted to say good bye to the coach. To let her know she tried. To reassure the Gyroscope teammates that my failures didn’t say much about them and how they coached people into healthier behaviors.

I’m a woman with overlapping chronic conditions that got an acute infection and there was no real way to come back from it in a short period of time. But I was still so exhausted and couldn’t bring asking Gyroscope for a pause (a sick break for fitness apps would be a killer functionality though). But my husband remembered the auto-renew date. So he just canceled the entire thing. Boom gone. Fuck off.

I opened the app for the first time in weeks today to at least turn back on the basic tracking so I didn’t lose any data history.

I like how the app does data visualization. I have no clue if I can track nutrition on the base level of product on Gyroscope. Whoever does their pricing tiers has changed it so much I’ve lost track. In the past I found it impossible to input nutrition into their tracker. It was amazing to have the app do it automatically. I relied on their team doing the macros not because I can’t do it myself but because I couldn’t figure out how to physically input it into the app. So I’m a little sad about that. But not sad enough to pay $150.

Categories
Chronic Disease Startups

Day 508 and Deficit

I woke up feeling reasonably ok today. I slept well but checking my trackers I learned my recovery scores were pretty low. My HRV was dipping into 30% recovery territory and I had a low blood oxygen count. I’ve been recovering from Influenza A so it’s not a surprise my lungs are struggling. But I tried not to let some bad data psyche me out. Maybe I was ok. I told myself I just needed to stick to my routine as I can’t let myself get into a physical deficit.

So I went about my morning routine with some optimism. I got some coffee and made breakfast. I took several rounds of supplements. I did some basic grooming. I felt basically human. I was all excited to dive into work from the second I woke up. I was so excited I’ve been dreaming about the presentation I’m giving at Consensus. I literally woke up with talking points.

And then at around 10am I realized I’d used up all my functional hours taking care of myself. Fucking figures. I am already in a physical deficit from this flu. It’s scary for me to be in a deficit as my favorite coping mechanism is to engage in workaholism. I over prepare and over work and I make demands of myself that only sabotage the end result. It’s entirely counter productive. It just looks socially acceptable because of the Protestant Work ethic.

So I need to calm the fuck down and accept where I am and that it will still be good enough. I know my shit. It’s worth it. And I’ll deliver on better than the average midwit. Honestly even acting like this is kind of midwit. The real galaxy brains would just be vibing it anyway. But it really is amazing how easy it is to fall into midwit fear based patterns. Believing in the bigger broader math of your own life is really hard because so much of our own ego is rooting for us to indulge in our worst impulses. So I’m going to calm down, not worry about my energy deficit and continue to do the work. It’s not glamorous work. It’s mostly making good decisions day in and day out. But then compounding kicks in.

Categories
Emotional Work

Day 504 and Write Down

I woke up coughing so hard I couldn’t catch a breath. I’ve forgotten how exhausting being sick feels. I legitimately completely forgot how it felt to be tired and in pain. And what a fucking luxury that is to realize.

I was in a miserable mood this morning. Why was I losing an entire week when I’ve been functional and dare I say normal since the new year? I haven’t had any issues since I got Covid over Christmas break with the exception of a couple nasty migraines and a few modestly shitty days. But today was Thursday and I haven’t felt even modestly human since Monday. It looks like I just have to accept in having a bad streak.

My husband very sensibly pointed out that I didn’t need to act like this was a catastrophe. I’m always looking over my shoulder in fear that I’ll have a relapse and be reminded of he limits of chronic disease. And truth be told I will have them. But I’ve been making the choices that shorten those bad days. I’ll be living a life in the country in support of keeping a strong body. It’s almost comical to type that as it feels a bit like tuberculosis and moving to the west. But then again I’ve always been a mountain woman at heart. It was only a matter of time till I returned to the terrain of my family. Maybe I’m a bit of a traditionalist after all.

Nevertheless this week is a write down. It won’t matter in the grand scheme of things. I’ve made the good long term choices. I’ve accepted that the fight is long and the odds aren’t great but this is America so you’ve got to fight like you might be one of the lucky few that win. I can only hope I am treading a path that gives me the chance to make a better life. And that I’m being reasonable clever and reasonably hard working and that’s often enough.

It’s actually quite hard to trust the math. You want to give in to all sorts of silly biases. Like that every second counts. When no it’s mostly just how your habits add up over time. The mind really strains against basic math like compounding. But I’ll try not to get my fear get in the way and trust that the figures probably add up and I’ve generally done the homework to trust my inputs.

Categories
Emotional Work Medical

Day 496 and Pardon the Interruption

I’ve been on quite a streak of processing as I’ve written through the emotional rollercoaster of a potential move to Montana. We found a house that seemed absolutely perfect but had to work through our feelings on the matter. We put an offer on the house and as of tonight we are the leading offer and negotiating the legal deal points.

I am however really sick. Alex tested positive for Influenza A last week and while I briefly felt under the weather, I thought my hyperactive immune system had beaten it. Alas the data suggests I very much have the flu and I’ve done my famous “double dip.” This happens to me fairly regularly where it looks like I’ve beaten something abnormally quickly but if I am stressed or not well rested the latent infection doesn’t quite clear and a week later it roars back full force.

Welltory reading showing high stress, los energy and my health at risk
Whoop reading showing a dangerously low blood oxygen count and an elevated respiratory rate this morning

Given my current status I am going to take a bunch of NyQuil and stay in bed and send my apologies to anyone who might need me tonight as I’m clearly a bit addled in the head.

Categories
Biohacking Medical

Day 483 and Medical Logistics

As you probably know, everything about the American medical system is a pain in the ass. I was expecting a delivery last night of a medicine that needs to be refrigerated. I went to bed assuming it never came. I woke up this morning to find it has been left out outside all night.

A $5000 dollar dose biologics injection (that’s only $150 in Europe) got left at door I don’t use without a knock. Thank god it didn’t get porch pirated as I cannot afford to replace it. I discovered the medicine this morning when going out for an espresso as it was left in dry ice by the basement door. Just a little chaos for the start of a day filled with other medical logistics.

Today is the day I pick up my prescription refills for the month. I have to do it once a month instead of a convenient quarterly by post situation as I take several controlled substances of which I’m not allowed to have more than a 30 day supply. It’s a real pain in the ass to travel for this reason as it has to be organized around when my insurance and the government will allow me to do so. If I want to be on the road for six weeks or go to Europe for more than a month I’m shit out of luck.

I take a lot of prescriptions to manage my chronic illness. I wish I didn’t need any of them. If I’m honest I put a lot of effort into wellness and lifestyle as part of a long term effort to ween off the pharmaceuticals like my biologic anti-inflammatory injections. I don’t want to be left for dead in a crisis as I’ve got no illusions that we will protect the sick and vulnerable. I protect myself.

I have to do the pharmacy dance now whether I like it or not. I have to take half a day to make sure everything comes in on the same day and in time for any mitigating factors like travel. I maintain a spreadsheet to keep it all organized. I have to use up valuable energy and focus on something that your average Canadian or German would find comically foreign. And that’s just the way it is and probably will be for sometime.