Tag: Health

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
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.

Categories
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.

Categories
Medical

Day 502 and Fever

I had a late lunch today. Maybe at 3pm or so. I took cough syrup with it. It’s now 7:13 and I’ve been asleep with a fever tossing and turning the entire time. I vaguely recall my husband coming into the bedroom to tell me he was going to tennis. I couldn’t wake up enough to tell him I was sick and needed help getting situated for the evening.

My best case scenario is I’ll crawl out of bed to the bathroom drug cabinet for NyQuil. I don’t think I can make it downstairs for more water though. I’ll have to drink from the tap. I’m finding myself wondering how much longer Alex will be out. One hour? Two hours? How long is tennis? The shades calendar isn’t on my phone. I’d need my laptop to check and I have no idea where it is as I’ve not unpacked from Montana. My Whoop needs a charge. That’s at the edge of my fever brain. Maybe I can wait till he’s home to address that as well. What’s one night without data right?

I keep trying to access parts of my mind about what I need for a stable night I can sleep through. Do I have it? Can I wait? Will I be able to wake up enough when Alex is home to get the help I need? Can I push through with what I have now. I actually had no idea I could still spike a fever this far into the infection. And I bet when I read this post without the fever high it will make even less sense than it does now.

Categories
Preparedness

Day 498 and Safety

The reality is sinking in that my husband and I are actually moving to Montana. And it’s unleashing all kinds of powerful emotions and realizations.

Alex told me he’s much more willing to honestly look at unpleasant political realities in America. He’d been ignoring the news for fear it would distract him. But even if Trump wins another term, the populist wing of the GOP sweeps and Roe is overturned, at least we are safely in the demilitarized zone of the inter-mountain west. Want to fuck with us? You are armed. We are armed. Let’s keep it polite. Our libertarian preferences might still have a chance out here and if not it’s awfully hard to subdue gun toting mountain people.

That libertarian zone means business gets done. The important work of capitalism doesn’t stop because of conflict or silly culture wars. The companies that will do the best will be the ones that can get away with ignoring culture wars and focus on making stuff people need to keep their lives afloat.

We also feel safer about our personal resilience. We will be less reliant on failing electrical grids with backup power from both solar and fuel generators. Considering the warnings being issued for this summer’s black outs and I suspect we will be glad to be less dependent on the grid. I’ll be glad to be somewhere cool where my air conditioner won’t be going out. And in the winter I’ll have a wood burning stove. I’m excited for having a stream on the property along with a pond and a well that does 25 gallons a minute. I look forward to making it a home that has backups for any emergency.

I’m also a big believer in traditional skills. Having a close relationship to the land benefits our bodies and souls. Putting time into the natural rhythms of the planet keeps us healthier. I want my circadian cycle to be nurtured. And if I am ever so lucky to grow some of my own food not only is that good preparedness but it’s certainly next level wellness shit. I want that kind of power for me.

The kind of safety and sense of security we are accessing with a homestead will help us access our deep talents. There are no excuses anymore to ignore the instabilities in our dusky lives. The crumbles have arrived. And I’m so deeply relieved we are finally taking the right steps to live with them.

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
Medical

Day 489 and Day Dreams

I had a dream during the day today. I mean the rapid eye movement kind not the fantasyland imagination. I had laid down to rest my eyes while my migraine medication worked it’s way into my system.

Generally I don’t fall asleep in the middle of the day. This is doubly true if I’m beating back a migraine. Triply so if it’s a particularly bad one. This migraine was so bad I needed nausea medication as well. I frantically texted my husband in the other room to help me look as I couldn’t locate my medications as keeping my eyes open triggered cascades of lightning flashes behind my eyes and nausea so bad I was afraid I’d lose the contents of my stomach.

I put on noise canceling headphones and a face mask and passed out. I woke into a dreamscape city that resembles the west village in New York. I was being instructed by a coach of some sort to forgive someone. Maybe it was myself. Maybe it was a cofounder of a past startup. The texture of the city was busy. Tourists were everywhere blocking the sidewalks. I recall a conversation about the end of the pandemic. Perhaps everyone was out celebrating. There were posters for movies or shows on every available service. I distinctly remember one in front of a fry shop that had media quotes promoting Billy on the Street combined with Family Guy characters. I’ve never seen Billy Eichner’s television show.

I woke back up nearly four hours after having originally gone to lay down. I felt dazed. I had the slightly unsettled feeling one gets upon waking in a bed that is not one’s own. I was disoriented and dizzy even laying down flat. My nausea still has not disappeared entirely. But the migraine had mostly passed.

Categories
Politics

Day 488 and Life

I woke up today feeling betrayed. I’ve never been concerned that my reproductive health would be decided by anyone but me. It’s been a luxury not to fear my own body knowing I had a right to chose for myself. It was my belief my family would do it’s own planning.

And we did plan. We did fertility treatments and it went catastrophically badly. Four years later I’m just barely stabilized from the attempt to extract eggs and freeze eggs and embryos. The vast majority of people have to cope with our reproductive health in some capacity. Having a family is pretty standard issue. Mine just happened to be a little more dramatic than average. But I never had to worry if it was my life or my unborn child. Or who would get to chose. I never got that far and now I’m a bit afraid I never will. I’m afraid to be pregnant in a world where my health decisions are not my own.

In case you missed the news, last night someone decided to leak a draft opinion from Justice Alito (supported by the conservative justices but without any indication where Roberts stands) that would overturn Roe vs Wade. Abortion would no longer be a federal question but devolve to state authority if Roe is overturned. After 49 years it looks like a major reversal is possible. To be clear it is a draft and while Chief Justice Roberts confirmed it’s authenticity, he said it’s not final or representative of any current justices or the courts final authority.

But it didn’t fucking matter what anyone intended. Chaos has absolutely ensued as various parties look to assign blame for such a massive breach of judicial norms. Everyone is jockeying for position and speculation is rampant. A topic like when life begins is guaranteed to generate strong emotional response. Who gets to decide is a big question. But I’ve generally fallen onto the side that the woman has autonomy over her own body. A fuck ton of other people felt about the same as I did. I’ve seen social media erupt in fear and hurt.

I’ve got very complex feelings on abortion. I’m against it in principle (and I’m deeply grateful I’ve never been faced with that choice) but I am not convinced a fetus is a person. Lord knows if an embryo is a person I know I’d have a very different opinion. I’m not even sure I would have been comfortable doing IVF if I thought an embryo was a person.

This is all complicated by the fact that I don’t think any of society’s crucial issues should be legislated by courts. They enforce laws they don’t make them. We have a legislative body for a reason. Why won’t we try passing federal legislation for anything? Like honestly I’m sick of the courts having to be a backstop. I think most people are. I just don’t get it.

I don’t fully understand how we build out laws to enumerate natural rights but I’m pretty sure it’s meant to be an amendment. We have sucked at this amendment thing traditionally and I don’t really grasp why.

I failed Constitutional Law so my opinion maybe doesn’t count. In my defense, I took it with Will Baude as a fellow classmate as an undergraduate and well now he is is famously a world class constitutional scholar. He absolutely wrecked the curve for my class of twenty. But maybe I understand the issue marginally better than I imagine. Just not as well as say someone tapped to regularly review how the court operates. I don’t know! But at a certain point the contentious shit is going to be an amendment right?

I don’t have a tidy summary to any of this except to say I know this is hard for everyone. I wrote this post because I’m scared and hurting. I can now imagine a world where if I’m faced with crisis like an ectopic pregnancy it’s not clear that the choice to terminate to save the geriatric mother would be in my hands. And I don’t think that’s right.

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.