Tag: Medical

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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.

Categories
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.

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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
Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.

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.