Tag: Disability

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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.

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Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

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Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

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Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

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Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.

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.

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Medical

Day 503 and Halftime

I really thought I’d kicked the flu this Monday. I drove back from Montana and I was feeling amazing about my life and my decisions. And then yesterday I just straight up crashed back into symptoms again.

I managed to both write and correctly tag and post while I was riding a modest fever high. Which is pretty fantastic. That’s how you know your habits are good. I was able to maintain my writing schedule on the strength of the rhythm alone. My husband who got tagged in yesterday’s post on Twitter was impressed that I was actually coherent. Practice really does make perfect.

I’m a bit annoyed that the flu had a halftime show. Now I’m fighting out the second half of the game and I probably didn’t take advantage of the respite of having a decent day or two. Now I’m back in the storm, to use an entirely different metaphor, and I’m upset the eye has passed.

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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.

Categories
Chronic Disease Startups

476 and Temptation

When I am feeling healthy I love to over do it. Most days I feel basically fine. Which is a significant improvement over even two years ago. I was living a little low. But maybe once or twice a week now I will just feel terrific.

Today is one of those days. I woke up early after a restorative night of sleep. I didn’t miss anything on my extensive wellness regimen. I was just nailing the day.

The sad part about doing wellness because you have to for a chronic disease is that you aren’t even ever hotter for it. Healthy women be doing yoga & taking supplements and practicing wellness and it’s a fucking Instagram campaign. I do all that shit and at the end I’m “ok.” It’s actually pretty demoralizing. I engage in flawless yuppie next generation wellness because it’s actually keeping me alive.

With this context it’s clear that I resent having to take good care of myself. It feels like a burden. So when I have a really good day. When I’m just energetic and focused and, yes moisturized and thriving, I’m also plotting how to undermine myself.

Because I felt terrific I just hand to indulge in it I took a bunch of calls and did a bunch of portfolio work. I went for an hour long creekside walk to discuss some communication strategy with Alex. I was vibing. Until I wasn’t. I crossed some little threshold and realized I needed to pull back the energy expenditure. I recognized I have given into temptation this time.

Categories
Medical Politics

Day 475 and 4/20

Last year on April 20th aka 4/20 aka the day America celebrates weed culture, I wrote an post on using medical marijuana for my ankylosing spondylitis. It’s a thorough look at how I incorporated THC & CBD into a pain control regimen for an inflammatory autoimmune disease. I’ll recap some of it here as my views haven’t changed at all in the intervening year.

As a libertarian I’m pro-legalization but I likely wouldn’t have chosen to use THC recreationally except that it happens to be a drug that has demonstrated benefits for my condition and is comparatively less dangerous than other pharmaceuticals I am also proscribed (namely opioids and high dose NSAIDS). For some context, despite being a native Coloradan I had never smoked weed till this year. As a kid it just didn’t seem appealing (that’s what hippie boomers do), and to be candid as I got older I didn’t love the idea of tying a health need to something that wasn’t legal everywhere.

I spent months testing everything from bud and regular joints to elaborate butter and shatter concoctions in an expensive Pax vape. None of it achieved the desired effect which was pain mitigation and minimal head highs. It was expensive and demoralizing. It was hard to manage dosing and consistency and I was unsure if it would remain a part of my medical regimen. I wasn’t sure weed was ready for prime time but I did feel it was important to document it all both for my own biohacking purposes but in case it could help others.

After all of that experimenting, I settled into regularly using patches. It’s one of the least celebrated formats and, because that’s how it works, the last format I tried before settled into a routine. I use a brand called Mary’s Medicinals that makes an excellent 50-50 THC to CBD blend. It is completely reliable on dosing and effect. It has little to no head high. And it lasts for eight to nine hours. Basically as close as I can get to a pharmaceutical. Turns out I wasn’t kidding when I said I really was in it for the pain relief.

I genuinely hope that THC continues to cement its place in American culture and medicine. It’s a cheap easy and effective drug that replaces a lot of expensive and potentially dangerous pharmaceuticals. Of course we’d have powerful interests working to ban that. It’s a a national shame and I’m glad Americans have fought back. I’d rather weed replace alcohol and tobacco. Why get drunk and wake up feeling shitty when you can get calmly high and feel better in the morning. But it’s a long path and sadly it’s still viewed negatively by some. I hope to do my part on 4/20 to encourage folks to see it’s benefits.