Tag: Illness

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Biohacking Chronic Disease

Day 668 and Health Multitasking

I didn’t take my own advice recently. When folks ask me how to begin biohacking I tell them to take it slow. You should change only one variable at a time.

Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.

Day 91 and A Beginner’s Guide to Biohacking

My biohacking has been focused on improving my core inflammatory markers for several years. Secondary metrics like pain and energy got better as my erythrocyte sedimentation rate and C-reactive protein went down.

What I did to improve those metrics was complex, time intensive and expensive but it was pretty clear what outcome I was pursuing. My broad goals were simple. The tactics merely a function of one overarching strategy to lower inflammation.

Recently I’ve been a bit sloppy about my goals as my SED rate and CRP approach normal. I got excited that I might be stable enough to pursue some new goals. I am always looking to lower my doses of pain management medications. But the real shiny object for me has been fat loss.

I’ve struggled to stay lean as several medications that improve inflammatory markers have weight gain as a side effect. I struggle with shame about my weight. So much of popular culture portrays weight gain as a function of poor impulse control. It embarrasses me on some deep core level that others might think I’m lazy. If immediately trigger’s defensiveness for me.

I can rationally know I was pursuing a responsible health by taking prednisone during acute phases of my illness, but a part of me is still so embarrassed by the side effects. What must people think of me? Even if I explain that it’s a side effect of medication I fear that it’s still perceived as been slovenly.

So I decided to go back on metabolic drug called ozempic because I just hate carrying excess fat. I thought I could add it into my routine. But I am not doing as well as I’d like with the side effects of the injection. I’ve now vomited two Sundays in a row and been unable to eat. That is destabilizing enough that it is impacting my other goals like a slow dose down of non-steroidal anti-inflammatory drugs.

Maintaining low inflammation rates with lower pharmaceutical intervention is obviously a huge goal of mine and far more crucial than dropping a few pounds of fat. Especially because my metabolic markers are all in the clear.

I just so badly want to put behind some of the visible markers of my disease. It was hubris to pursue ozempic when I know I have other metrics that are more important than my shame about having steroid fat. So next time you see someone who is overweight I encourage some empathy. You never know the whole story of someone’s health.

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Politics

Day 664 and Political Disabilty

I did not watch the Pennsylvania senatorial candidate debate between Democratic Lt. Governor John Fetterman and Republican tv personality Dr. Mehmet Oz because I live in Montana. Why the fuck would I do that? But I have caught the discourse surrounding it and I do not like it.

If you are not following this saga, Fetterman had a stroke a few days before the primary in May. He is recovering but but is still having trouble with speech. People who are not familiar with neurological recovery processes (otherwise known as 99% of normal humans including me) are freaking the fuck out about what it means that his speech is impaired. It looks particularly egregious when compared to Dr Oz who is professionally competent at communicating clearly on television because that is his job.

Naturally we are seeing the absolute worst possible response to Fetterman’s current disability from just about everyone. Supporters of Fetterman are insisting that there is no evidence of mental degeneration or acuity issues. Which might be true but I don’t know. But the general sense I get from supporters is one cannot even suggest that there might be processing issues because doing so would you an awful ableist human being. Neat!

On the flip side, Republicans and other opponents are insisting Fetterman isn’t fit to hold office as he is not capable of speaking clearly. The Republican position seems to be that a speech impediment is a clear sign of mental decay and electing him is maybe a diverity and inclusion policy so wrong it should insult us all. Also extremely neat!

I’d say naturally both positions are ridiculous but I’m not sure this is natural to anyone. Ableism, or discrimination against the disabled, is an exciting new front in the culture wars. Being being disabled is a hot new identity marker despite the fact that a quarter of Americans have some form of disability. It’s not that unique or cool to be disabled. But modern medicine is a miracle so we can’t rely on Darwin anymore to keep us damned cripples out of sight anymore making light eugenics kind of a popular position. I don’t love it.

I am someone with a modest disability. I have a spinal condition called ankylosing spondylitis which is basically arthritis in my spine. So I don’t find any of the commentary surrounding Fetterman’s disability status encouraging. I don’t love that the basic assumption is being less than abled bodied is disqualifying for work. It depends! This shouldn’t be a whole fucking thing.

A disability doesn’t mean you can’t work like a “normal” person but it does mean you have some limitations to work around. This doesn’t make you better or worse as a person. Being disabled has no moral valence. Alas we tend to valorize suffering and demonize perceived weakness. Neat!

My position is most disabilities are sort of a modest inconvenience that on balance forces you to hone other abilities to be competitive. This is my super hero theory of disability and might be a contributing factor to the side that valorizes disability. How cool is it to be an X-Men? Extremely! But I don’t overweight this position as I largely think a market economy fixes by forcing us to all to compete and find our niche.

If this is scandalous to you, I’d say everyone has something that is a struggle to overcome even if most people’s thing is just being kind of an idiot. Half of us are by definition below average. But imagine if I thought you being stupider than me was disqualifying for holding political office.

My whole point in this long ramble is that the Democrats are being ridiculous in insisting we cannot look at the strengths and weaknesses that come with bodies being sick. We are on year three of the pandemic so that ship has sailed. The Republicans are being ridiculous insisting that speech impediments are disqualifying. Tump didn’t even have the benefit of a stroke to blame for his speech patterns.

It isn’t ridiculous to ask someone to be transparent about recovery and abilities. I’ve got no idea if Fetterman has slower thinking after the strike or if it’s just slower speaking. I don’t really care to be honest. Not my senator.

But if we all keep insisting on physical and mental perfection from our elected officials we might not have any politicians left. Which actually on second thought might be ok.

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Chronic Disease Politics

Day 658 and Time Perception

I don’t know about you, but my sense of time has never really recovered from the pandemic. Time got distended and warped in ways that were hard to appreciate at the time. I struggle to tell if I’m making progress or if I’m standing still.

If I’m really honest with myself, I started losing the thread on time when Trump got elected. I was one of those people for whom that fractured my reality a little. Not because I couldn’t conceive of him winning but because I could. That was my first moment where I felt like I was beginning to split from shared reality as I was so sure he would win and so desperately wanted him to lose.

Somewhere midway through Trump’s term, my health got fucked up. My sense of reality fracturing combined with my first taste of time being distended was when my health went sideways. As I stopped working somewhere in 2018 but it’s hazy. As I spent more and more time in hospitals, doctors offices and in bed, and less time at the office, the usual ways I used to tell time degraded further. Reality had already shattered so no reason not to let time shard too.

So I can’t entirely blame my sense of displacement from time on the pandemic. My sense of instability absolutely predates it by several years. By now much I couldn’t exactly tell you. Between my health and Trump I ended up a step or two off of consensus reality.

This did end up being lucky. As the pandemic was inbound I was prepared before it hit. I had tied myself so effectively into the immune system of the information environment I knew it was coming in December.

But I wasn’t entirely prepared for how much I’d up end my life as the second order effects of the pandemic kicked in. We did the first few months in an apartment, the first summer in a vacation house on the Hudson River and then decamped for my home state of Colorado.

It’s only just as we’ve decided to commit to Montana that my sense of unreality is easing a bit. We’ve got a home that we own and a set of preparations that makes it stable through some gnarly potential futures. So why isn’t the time dilation is easing? Why does it always feel like there is never enough time and also far too much time all at once? If anyone has the answer I am listening.

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Medical Preparedness

Day 630 and Sympathetic Nervous Response

One of the downsides of having any kind of medical bullshit is having to keep an eye on yourself. If you over do shit you’ve got no one to blame but yourself.

I’ve been doing a wilderness medical incident first responder course this week. I initially went into it slightly concerned with my ability to physically keep up given my ankylosis. I was easily the odd duck out in a group of former military folks, paramedics and wild land firefighters. If I’m honest I didn’t want to embarrass myself by showing too much frailty. I was already the only woman in the class. I didn’t need to be the cripple on top of that.

But over four days I’ve managed just fine. I did wound packing and splints. I did a number of incident scenario responses ranging from anaphylactic shock to heart attacks. I even did multiple mass casualty response drills. Today I managed one as a triage incident deputy and comported myself quite well.

I was feeling pretty cocky about how well I’d managed through the week. I was enjoying that sense of accomplishment right up until 5pm or so today when we had our last assignment of the day. We’d just finished up a drill with five patients who had been caught in a tornado. It was an hour of field work and triage outside. I was thinking alright maybe I’m getting the hang of thing. But no I was about to embarrass myself on one of the easiest tasks in the course.

It was time to pack up our own medical kits. We got a big baggie with all the supplies we could possibly need for our our first aid kits and dumped it out on the desk. Our instructor began going over all the items and how to pack them up into the bright orange brick that serves as your kit bag. I was doing my best to follow along but my brain was just not having it. I kept trying to figure out what items went where and how it was meant to go. And I was not remotely keeping up with the class or the instructions.

I’m starting to feel overheated and I’m struggling to concentrate. And it’s then I realize “oh shit I’m in a bunch of pain” and I realize I haven’t taken my pain medication for hours and it is starting to show. I just ran around in a big field doing triage for an hour. So I think to myself well I’m having a sympathetic nervous system spazz out. The pain and fatigue is sending me into fight or flight and I’m losing decent coordination and fine motor skills. I am becoming one of my own patients.

I didn’t finish packing out my kit. I had to excuse myself. I briefly considered if it would be funny to have a medical incident in a first responder course. But I was fully capable of treating my own acute stress response. I was getting worked up by an inflammatory response from my ankylosis and low and behold the pain in my spine was going to spike.

The end of the story is that I’m in bed and the non-steroidal anti-inflammatory drugs have kicked in. My pulse and respiration are fine. I’m no longer in fight or flight. And yes I’m a little embarrassed that packing a bag is what did me in. But on the other hand, that’s a very “Julie” way to learn a lesson.

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Emotional Work Uncategorized

Day 623 and Pausing

I am feeling a bit anxious about back to work season. I’ve traditionally had a terrible relationship with work. I’m a workaholic and struggle to pace myself effectively. I particularly love riding on the zeitgeist of a season like the fall as “everyone” is back at the grind and I like to ride the energy of the moment.

But I also need more frequent and shorter pauses than the American work week or season has ever allowed. I’ve always been afraid to take them because I fear being seen as lazy. “Only the morally weak rest” is a truism of English and Germanic lineage well prior to the Reformation. Though that’s kind of an aristocracy needs the serfs working thing.

But Protestant Work Ethic aside, I’m not really cut out for hustle culture. Being disabled, even modestly with something my spondylitis, is like the double whammy of being weak and lazy. I need to maintain a different schedule because I cannot overcome the foibles of my own body? That’s an affront! I’ve got a lot of self talk that basically goes like this

You soft feminine pathetic weak bitch get your ass back to work.

Me to myself. Sadly.

Does someone have internalized issues with feminine cycles? Oh yes she does! I guess it’s not just being lazy but it’s being female and a waste of productive worker all in one body. Super fun! And yet here I am a libertarian and I work in finance. Square that circle my friends.

Capitalism has enjoyed patriarchal structuring because it allows us to categorize the inconveniences of bodies that are harder to regulate. Women in the workforce was a pain in the ass until we figured out chemical birth control I’ve got to assume.

But all these legacies of who is worthy and who is strong and who is valued are kind of bullshit constructs. I can take what serves me. I don’t need to get all up in my head about having a less productive body because who even set the damn standard right?

So I am reminded I can pause without crashing. I choose to pause at my own leisure. I can choose to self nurture so I operate from my own point of maximum strength. I have to chose to pause. A pause is not is weakness.

A pause is like the ocean cresting before the wave breaks. And I can choose to ride that momentum. This is all a part of my own work on not just surviving the current moment but thriving with optimism. It’s peace from strength. While I recognize and even ride the chaos outside, I do not feel chaotic inside.

Categories
Preparedness

Day 620 and AQI

I am in the throes of a horrifying migraine. The take two Imitrax and pray type. It’s also the nausea inducing type so I’ve not eaten all day. I feel awful. And it’s mostly not my own fault even though I often like to blame flares in symptoms on my own lack of discipline or purity in maintaining some Platonic ideal of lifestyle or wellness regimen.

It is fire season in the west and I’m sure some, if not most, of my migraine is tied to the horrifying air quality that is choking out thousands of miles of California, Washington, Oregon, Idaho and Montana.

An AQI reading of western America on September 12th at 3:48pm Mountain Time from PurpleAir

The AQI or air quality index in my neck of the woods is 160. Unhealthy for sensitive individuals is the coy and somewhat misleading phrase used. It means in practical terms visibility is so bad I can’t see the mountains a few miles away.

Montana is at the moment free of any major fires. Our colder temperatures, lack of pervasive fire beetle blight, and reduced density makes it statistically safer than the Colorado front range when it comes to total fire danger. But it’s no safer from prevailing winds and the pollution from fire in other states. In order to escape from it entirely I’d probably have to leave the continent.

I’ve obviously opted not to leave my home region of the mountain west even if I have accepted moving to a more northern and protected corner of it. But there is a certain existential “No Exit” sense I have with AQI and fire season in general. It may just be my lot in life. Maybe it’s everyone’s lot. To give up your homeland is a complicated fight. I expect for some of humanity it must involve either certain death or the prospect of great riches

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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 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.

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.

Categories
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.