Tag: Medical

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Emotional Work Preparedness

Day 613 and Timing

It’s hard to look straight on at your desires. Why is it that some of your life arises from your priorities and focus, but others are just chances and circumstances?

The hardest part about looking face first at being responsible for yourself is that you are both in total control and not in any control. We want to live with willpower. We want to be people of purpose. And yet life is happy to show us how much it’s all just dumb fucking luck.

Because we are what we make time for in our lives. And if we don’t make honest time for ourselves how the fuck will we ever know what we actually want. If you let life idle past you that’s fine. Because that is the path of fulfillment all along. And in letting ourselves just be maybe we find entirely new reservoirs of resources.

I’m considering taking a wilderness first responder course. I’ve got other priorities for the fall but I also made a commitment to a resilient rural life. Somewhere in my own desires I may find that what I want can and does align with the rest of my life. That by opening up to something new I also see who I am more clearly. I believe they call it getting perspective.

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Politics

Day 594 and Feminine Mystique

I spent my morning desperately trying to distract myself from the pain of menstrual cramps. It’s my first period being without the luxury of living on a city sewer and I am modestly grossed out by having to roll up my tampons in toilet paper and toss them in a tiny trash can.

If you haven’t had your own private septic system, well here is a lesson in rural living. You can’t be putting big globs of cotton into them. Technically you shouldn’t be flushing tampons into any kind of plumbing anywhere. But who amongst us hasn’t done so. Flushable wipes are a lie that big butt wipe has put a lot of marketing dollars into.

Were you uncomfortable reading that? I bet you were. The indignities of embodied life are plentiful but we especially dislike hearing about women and their reproductive system. Don’t trust an animal that can bleed for three days and not die amirite?! Something super mundane that is the reality for half the planet is treated as incredibly foreign and disgusting. I totally love how it makes me feel like a monster just for being human.

I am feeling this particularly acutely because the discourse around women and their rights is at a nasty place in America. We are barely a month out from Roe v Wade being overturned in America and the horror stories are pouring in. The curtain has been pulled back to reveal some unattractive realities.

And I’m not even talking about just abortion. A whole slew of reactionary positions are being floated by the Moldbug crowd and spun up into adjacent meme spaces by feral readers of Bronze Age Pervert. They are happily chatting away about the failures of liberalism and chief amongst them is women’s right to vote. It’s not at all shocking to hear open discussion about how the franchise should only be open to land owning heads of family. So naturally sorry women. It just follows.

I’m getting a lot of pushback from more progressive men (and by that I mean anyone who thinks women voting isn’t up for debate) on my feeds absolutely confident this isn’t happening. No one could possibly believe this they assure me. It seems so shocking to them. But I’m here to stare back into your soul and say “honey please.” It’s all up for debate when people are hungry and angry.

But since you need convincing. I’m telling you that regular people with normalcy bias have already decided I have less bodily autonomy than you. What makes you think these reactionaries have any respect for my franchise if you didn’t even notice the right to chose mattered.

It’s offensive to say this as women have never had more rights but also I’m still a second class citizen. And I’m a white married lady so I know how fragile my perch is and how very high in this delicate dénouement of the battle of the sexes. Progress is fragile. Branches can snap.

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Emotional Work

Day 589 and Mental Health

Trigger warning: discussing depression and oblique references to suicidal depression. If you are in crisis please call 988.

I had a scare this morning. Someone I love is going through some stuff. I didn’t know if they were safe for a short period and I found myself frightened by the prospect of losing them.

When I learned they were safe I was relieved but also angry because how dare they scare all of us like that? I scrambled to cope with my own feelings and a desire to engage in codependent behaviors. I called my therapist and pulled myself together.

While I don’t suffer from depression it’s not an entirely foreign concept to me. It has felt closer over the pandemic as I’ve seen others struggle. I have family members and friends who live with varying degrees of chronic depression and I have witnessed first hand how much strength it takes live with it. I have chronic pain and I don’t think it is even in the same ballpark of debilitating as depression.

I’m not any kind of expert and my advice is mostly me talking into the wind so please only take what serves you. But what I’ve learned is that people genuinely do care about mental health if you want to seek a connection. We want to help. We want to help those that want to help themselves. Your people do love you and you may have more of them than you realize.

Sometimes it feels impossible to ask for help. Maybe you cannot ask friends or family because of any number of reasons. But that doesn’t mean you are alone or no one is here to help. There are hotlines. There are 12 step meetings. There are apps and services. As one internet friendly to another you are not alone. If you need mental health care please take whatever step feels feasible even if it’s just a text message into the either. You can do it.

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Chronic Disease Community

Day 571 and Isolation

The move to Montana is mere days away. Alex has started to feel a sense of loss. He’s been able to build a nice community here in Boulder in just two years thanks to his deeply weird (joking) habit of having hobbies. I on the other hand, have never felt more isolated from my hometown. I cannot wait to leave.

Some of this feeling of alienation is simply transient. It is my natural dislike of summer coming to a head because of the physical toll extreme heat takes on my spinal inflammation. I can’t be outside much during these new extended heatwaves, which defeats the purpose of living in Colorado almost entirely. Who wants to live somewhere you can’t go outside for 3-4 months of the year. Let it snow!

But some of it is that I can’t have physical hobbies that are too energetically expensive like like Alex enjoys. I spend my summer weekends alone in bed reading and shitposting, while Alex has a fairly vibrant in person social life year round. My lower key physical hobbies like gardening also aren’t particularly social even though they could be if folks wanted to join me.

Part of the issue is that we have a rented townhouse n Boulder that is too small to allow for any socializing. You can’t really come visit us. There is no open space for welcoming friends, neighbors or family members. While people have come to visit us in Colorado, virtually none of them have set foot inside the house. Some of that was Covid but it was mostly not having any space for anyone to sit and relax for extended periods. And because we knew it was transient we never bothered to fix it.

And when you can’t guarantee your physical health, it mostly looked like people coming to visit Alex and me staying home. I couldn’t afford to use my energy budget outside the home a lot during Covid. I assume folks think I hate them, when in reality I just can’t guarantee I’ll be well enough to be out and about for three hours.

It’s much easier for me to commit to socializing if I am home in a safe place where I can lay down or access my medications. I’d like to play host as it’s just easier to accommodate my own limitations. It feels selfish but I think most people wouldn’t mind working around a minor disability like spinal pain.

I hope that people will take this as an open invitation to come visit us in Montana. We will be investing heavily in our guest rooms and eventually a full guest house in the barn. We want people to come up to take advantage of our access to a more remote and laid back form of living. You can go shoot with Alex or you can kick back on the porch and stare at the mountains with me. It’s up to you. But we’d both love to see you.

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Medical

Day 568 and Upset Applecart

I’ve been in a bit of a mad dash to get in last doctor visits with people on my treatment team that are in Colorado. Bozeman being a much smaller city than Boulder or Denver isn’t rich in specialists.

Of course, a hammer sees a nail. So on my last visit to my primary supervising physician in Denver, he just has to prescribe some new shit. He’s a bit anxious about doing some things remotely so we jumped into a new treatment I’ll start in September and a course of antibiotics I started on last night for an infection.

I’m basically stable but I had some symptom flares recently with all of the travel and heat. So getting put on a new antibiotic to sooth my immune system, which is both reactive as fuck and suppressed by biologics seemed sensible. I had some infections that weren’t clearing because of the suppression and there is no sense treating deeper stuff with that going on.

But alas last night at around 1am I realized we may have upset the apple cart a bit with the antibiotic. Only modestly so, and perhaps worth it if the clean up gets rid of any bad apples spoiling the whole bunch. I can feel certain symptoms improving even as I am indignant about the side effects from the medication.

But I’ll be damned if this antibiotic doesn’t have some side effects I dislike. It makes me both woozy and a bit amped up. Which is a shitty feeling. It was clearly a bad idea to take at night but my doctor wanted me to have my first dose as soon as possible. I was absolutely Tweeting late into the night being the central nervous system effects.

It often feels as if there is always something new and stupid wrecking my body in the summers. And there is little choice but to upset the damn apple cart to deal with it. I know it is necessary and I’m lucky to have the help. But I think I’m entitled to dislike it just a little bit.

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Medical

Day 567 and Seasonal Affective Disorder

One of my Twitter mutuals blew my mind yesterday.

I’ve always been a dick to my SAD friends, but heatwave depression is right here, sitting on my lap.

Brent Cox

I’ve got a few friends with SAD or seasonal affective disorder. I had always thought of SAD as a winter disease. Lack of sunlight messes with your circadian rhythm and it can lead to depression (among other other physical symptoms) during shorter colder months. I’ve never had it personally. I thrive in the winter. Maybe it’s generics as my ancestry is Scandinavian.

It never occurred to me that there could be an inversion variant of seasonal affect disorder for the summer. But apparently SSAD exists. People can get summer season affective disorder. It’s rarer but it exists.

“What causes summer SAD? We assume it’s heat and humidity.”

New York Times

Which frankly makes total sense. It’s a fucking misery most of summer. Heat makes my pain worse. I’d assumed any dislike of summer was related to the increase in severity of my symptoms. But maybe it’s a more holistic issue.

Another seasonal challenge that could worsen with climate change — and play into mood — is pollen, said Teodor Postolache, a professor of psychiatry at the University of Maryland School of Medicine. He said the immune response to allergens like pollen might create a cascade of changes in the body, including the release of biological compounds called cytokines that regulate inflammation and have been connected to depression.

I don’t think I am necessarily depressed in the summer but my mood is generally rotten. And if it’s from heat or pollen or humidity, the end result does seem to be I’ve got increased inflammation during the summer months and it’s uncomfortable as hell. I don’t know what I’ll do with this information (other than ask my doctor at my next visit) but it’s nice to know that I’m not crazy for feeling crazy in the summer.

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Politics

Day 565 and Mommy Issues

I just want to scream into the void about how disappointed I am in American men right now. I probably shouldn’t but this is my own little space so I may vent briefly and without a lot of citations. I’m angry and sad and I’m pretty convinced we’ve got a bad case of mommy issues with the way we are treating women’s rights this summer.

I’m surprisingly steamed that gay marriage is being protected via legislation before bodily sovereignty. It is just so American to protect the fucking tax regime. Like I get it. We organize all our property around monogamous two person households. Everyone should have equal access if we have it.

Also maybe we could not have the government involved instead. But nope we’ve chosen to get the government involved in social organization and now we’ve got to fight for equal access. And sure the liberals in America are scrambling in this particular summer to front run the Supreme Court being open to overturning settled precedent on all kinds of shit. I get it. I swear. I get it. I’m glad something is being done.

But like in what fucking world is bodily sovereignty for half the population the sort of problem you don’t bother to codify into rights first. Or at all! Why is it easier to protect marriage than my body. What message does it send we protected gay marriage before the right to manage your own body.

We are able to pass legislation on protecting equal access to some dippy tax scheme but we couldn’t figure out how to have control control over your own body if you can get pregnant. White gay men have more sway than brown women. I get it. I get it. I’m just so fucking disappointed.

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Biohacking Chronic Disease

Day 564 and Not Exercising

Summer is supposed to be when you are outside and most active. But that’s not been true for me. I’m not entirely when I stopped working out this summer, but I suspect it was sometime this May when I got the flu. When I was in Montana I caught influenza A from my husband while we were buying our new homestead.

I was pretty under the weather for the entire month. I probably extended my suffering by being in a high stress situation for several week. I had to do things like attend a two hour property inspection while I was definitely still sick. And then a few days later I was stuck in a car for 8 hours straight back to Colorado. Thankfully my husband actually did the driving. Negotiating the emotions of buying our first house while sick wasn’t ideal either. That was arguably the most intensive part of the entire experience.

Going into May I was hiking and walking an hour a day along with several consistent months of a 3 day a week weight lifting split routine. My squats looked good and my tracker apps were pleased with my low level ambient activity. I was still struggling with fatigue but I felt like being active was surely the best way of improving my energy levels.

I’m not as convinced this is true anymore. There has been chatter for decades about post exertional malaise in various viral and autoimmune cases. It is regularly brought up now in long Covid as well. I’ve experienced some variant on and off for years whenever I have symptom flares. Even modest exertion like a short walk can lay me flat if I’m not feeling well.

As I had a lot of ups and downs in my symptoms in June in July I let even modest exercise efforts go entirely. Between traveling to hot climates like Texas and the Mediterranean I wasn’t exactly eager to be outside either. Heat is my nemesis. I’m probably one of the few people who can go spend time seaside and struggle to be outside unless I’m literally in the water. There is a reason I am so eager to move to Montana.

Looking at my various trackers and diaries the past three years I have seen aggressive declines in my physical activity levels over the summer. As heat domes and 100 degree days become the norm I just can’t tolerate a lot of time outside. The temperature barely dips below 80 even at nighttime. And if I try to be active in that kind of heat I see set backs in all my metrics.

I’ve got years of data at this point and it’s funny that I’m always at my fittest and most active in the dead of winter. Everyone else enjoys sweater weather and Christmas indulgence while I am lifting heavy, energetically watching my nutrition and reveling in the cold. Maybe you can take the Swede out of Scandinavia but you can’t take the Scandinavian out of the Swede.

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Chronic Disease

Day 559 and Stuck

I got stuck on the couch today. I’m not entirely sure why but I’m in the middle of a massive symptom flare. The pain is so acute and unrelenting that if I so much as sit up from bed I’ll get stuck in that position. I made the mistake of trying to eat lunch on the couch around noon and didn’t work up the capacity to get back into bed for over an hour.

This is becoming a theme on bad days. I’ll find myself upright for forty minutes completely unintentionally because moving, even to a more comfortable position laying down, is so painful I will put it off until I simply cannot remain upright anymore. It’s just that bad. Even the higher grade pain management isn’t doing shit. I’m just stuck in the pain until an even worse pain develops.

That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change. And I’d love to wax philosophic about that but I mostly mean it literally. If you’ve ever wondered how I got popular on Twitter, it’s simply because it’s the only thing I can do when I’m physically stuck in place by pain. I thank the internet Gods that this has been monetizable through investing or I don’t know what I would do.

You could almost surely correlate the number of tweets I send with the pain scale of my day. If I’ve tweeted more than 50 times on any given day it’s probably because I am over a 7 on the pain scale. It’s 2pm and I’ve tweeted 32 times today not including my DMs. I keep hopping the pain will abate enough that I can shower but it doesn’t show any signs of letting up today.

Frankly I’m just relieved it’s only my spinal pain and not anything else more exotic. Earlier this week I was dealing with being itchy and then I had a migraine that took 48 hours and several Imitrax to break. Regular old spinal pain is at least a recognizable and normal return to form. But until this nerve storm abates I’m stuck. At least until something worse comes along.

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Chronic Disease

Day 556 and Histamines

I am so itchy my entire body is covered in yellow and purple bruises from my attempts to generate some form of relief. I set out title tag this post with “itchy” but apparently I did that three days ago.

That makes me feel super fucked as I honestly don’t even remember writing it. It’s been a blur of Benadryl and travel and shitty sleep and absolutely no recovery. And I am desperately thirsty because I keep taking drugs that dry you out. It’s a misery.

I am running a poll on Twitter asking if nausea, pain or itching is the worst discomfort. Pain changes you the most. Nausea is the most consuming. Itchiness is the most irritating.

I probably feel that way because I am being driven absolutely nuts by the itching. I went for a short walk this morning before the heat dome took the temperature to 100 degrees in Colorado. It was still hot enough that I swear. And everywhere I swear I found myself with a light heat rash afterwards. My body is clearly on some kind of self hating response loop as that’s not normal even for me.