Tag: Pain

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Chronic Disease Emotional Work

Day 636 and Waves

Yesterday I was on top of a wave of positivity, so naturally this means today I was prepared for that wave to crash. The rhythms of both life, and my body, must accommodate the full range of highs and lows. After several intense days of work and activity I spent my day reading and absorbing news and financial reports in bed.

I am becoming modestly less indignant about having to monitor and meter my energy carefully. This is a new development in some ways as I’ve struggled quite publicly with mixed feelings about accounting for fatigue and pain in my workflows. I have in the past easily fallen into envy and jealousy when I see how much able bodied friends give little thought to their physical realities.

I have slowly let go of negativity around around around my body and come to embrace the rhythms of requiring rest. I’ve even come to see it as a strength as being forced into mitigating stress loads and cortisol spikes means I have more control over my sympathetic nervous system. Rather than give in to fight or flight, I am able now to able to choose how I respond.

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Medical Preparedness

Day 627 and First Responder

My hands are stained blood red. Despite a good scrubbing, my cuticles definitely show that I spent time packing wounds today. Ok, fake wounds. And it’s fake blood. I am taking a wilderness medical incident certification course. And it is very hands on. Literally.

A firefighter packing compressed gauze into a femoral artery simulator

I got the opportunity to take a spot in a course that one of my friends teaches. I’ve got so much exposure to medicine after the last several years of health challenges that I’ve been yearning to upgrade my knowledge to something more practical than my own personal biohacking. So when Tom offered up a spot in his medical incident certification course for wilderness response, I said you know what fuck it I’m going to do it.

And I’m so glad I did. Not because I anticipate needing to apply a tourniquet in the back country of Montana. Or that I’ll be faced with packing a groin wound to stop someone from bleeding out when they are hours away from the hospital. Though I am glad I now know how. But because I think hands on experience with a rougher world is experience I need to do my job investing in an increasingly complex, chaotic and unstable world.

I was absolutely enthralled by the first day. It was me and a bunch of other much more experienced EMTs, paramedics and wildfire fighters. I also met a number of extremely savvy folks who special in fire and emergency incident response.

I was very much thrown into the deep end of first responder world and I’m not ashamed to say I “died” on the very first scenario test as I’ve got no idea what I’m doing. But I’m soaking up as much information as I can as fast as I can. Though not quite as fast as arterial blood gushes. Yet. Ask me on Friday if I’ve improved.

I couldn’t tell you precisely why I think this kind of hands on exposure to emergency response is so crucial but something deep in my gut says that I cannot possibly invest in a changing world without having some on the ground exposure.

The folks who are fighting our worst wildfires and responding to our most intense natural disasters know something visceral about chaos and the fragility of modernity that the rest of us do a lot to suppress.

Just casual conversations as we went through lessons and practice opened up my mind to new areas of opportunity. I found half a dozen blind spots I didn’t know I had. The world is much more chaotic than the media and our social channels let on. But it’s also possible to tackle them head on. We are not helpless. And it’s not hopeless. And I’m feeling fully empowered to deepen my relationship to chaos as I learn just when and where I have more agency.

Categories
Chronic Disease

Day 621 and Pain’s Anxiety

Before I was diagnosed with my spinal condition ankylosing spondylitis, I didn’t really understand that I was in pain. I know that sounds weird, but I just knows I felt like shit. I hadn’t yet pinpoint the origins of the crisis in my own body. I was a stranger to myself.

Back then getting a diagnosis involved a lot of questions about my mental health. Are you anxious? Would you consider taking an anxiety medication just to see if it help? Are you sure it’s not all in your head? No doctor I’m not sure of anything that’s why I’m asking you.

The thing is I did feel anxious. My central nervous system was in a perpetual state of fight or flight from the pain. I had tachycardia. I was twitchy. I wasn’t a sleeping well. I didn’t want to be touched. It hurt too much. I was exhausted all the time and felt overwhelmed that no one seemed to know what was wrong with me. I’m lucky no one asked me if I was depressed or I might have been put on Prozac.

I’m one of the lucky ones. My chronic disease has a simple blood panel and physical exam to diagnose it. It only took me a few specialists to get to a rheumatologist.

I fear I would have been given an anxiety diagnosis and told it was all in my head if I’d had something more complex. But thankfully we untangled that any anxiety or depression I felt was simply a function of being in an inflammatory condition so acute every movement was painful. You’d have a racing heart and a fear of movement or touch too if everything was painful to the touch

The thing is I am scared of my pain. I do regularly get caught in fight or flight fear responses if the pain appears and I’m not prepared for it. I am militant about certain aspects of self care and my biohacking as I fear flares. I fear the drugs that are required when it isn’t controlled. It makes me anxious to need drugs at all to control my symptoms. Especially in America where a war on drugs has made it hard to need anything stronger than Advil.

Everything about pain and it’s treatment is anxiety inducing in America. And that’s a hard comorbidity to live with in a disease. As if pain wasn’t enough, the latent fear that you might not be believed lingers.

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

Categories
Chronic Disease Politics

Day 618 and Personal Politics

I hesitate to share too much detail about this but, I’m an opioid user.

Actually I’m not hesitant to share that at all, it’s in fact the core salient point I want to make today. I have a chronic disease and sometimes, blessedly more and more infrequently, it can only be effectively treated with pain medication.

Why am I talking about this? And in public no less? Because unless powerful people that have a degree of social, personal and political capital discuss things we deem unsavory we never make any damn progress on humanizing our inhumane responses. And our response to the opioid epidemic is inhumane.

The backlash to the crisis, a mash up of intense scrutiny, government intervention and rigid rules, has now reached a point where it is doing as much harm as the original crisis of overprescribing. And I hope my personal story allows you to see why.

My spinal condition (ankylosing spondylitis) can be so debilitating that the only way I can get out of bed to accomplish basic tasks is by taking a mild opioid called Tramadol. It’s not in the same category as OxyContin or Percocet but it’s not risk free either.

I’m lucky that my condition is relatively well controlled. I don’t need pain medicine all the time and I work very hard on alternative treatments in the hopes that I won’t need it at all in the future. I spent a small fortune making sure I don’t need a core useful medicine. Let that sink in.

I’m not an addict. I am monitored by a team of professionals. Every step of the way is in fact monitored extensively by state and federal systems along with massive insurance and hospital system oversight. It’s the closest I’ve come to experiencing the Panopticon. It’s life altering in its scope. My entire life by necessity has to revolve around when the system deems it safe for me to get a prescription. Not when my doctor thinks I need it. When Uncle Sam does.

I fucking hate relying on something so dangerous and so demonized but also so regulated. I hate that my entire private medical life is so closely monitored by the state. I hate all of it. But, on very bad days, the choice is immobilization or Tramadol. And I’m not at all ashamed to say I pick Tramadol. I want to be a working productive member of society and that’s hard to do when you are unable to move from the pain.

There is no grace in suffering but what it teaches us. And I’ve learned we use pain as a cudgel to control people in our society. That it is so effective is why I am both a libertarian and fiercely against the carceral state. One day it might be you suffering and you won’t deserve it either. And I pray that you will be shown grace in your personal circumstances.

But I’m lucky. I’ve got other pharmaceuticals, like biologic injections which treat inflammatory conditions, that I can rely on. I’ve got THC and CBD for their anti-inflammatory properties. I’ve got good old fashioned steroids like Prednisone. Which interestingly, my physicians universally believe is more dangerous than my Tramadol usage and did actually require an extended titration down as I was physically dependent on it, as your body stops producing the necessary hormones. They’d rather I use Tramadol for flares.

But you notice the government isn’t up in your face with a massive publicity campaign showing cops busting down Prednisone rings. There are no political advertisements showing how an opponent supports big steroid. Even though if you saw Donald Trump after he got Dexamethasone during his fight with Covid it was pretty clear he felt pretty good. Steroids have gotten me far more fucked up and also higher than any opioid ever has. But no massive surveillance program has ever come down on anyone for anti-inflammatory drugs.

Because that would be fucking ridiculous even though it’s just as addictive in driving physical dependencies , just as debilitating and depending on your body chemistry, just as “fun” as narcotics. Fun fact about me, I don’t have whatever chemical makeup that allows an opioid to give me a high. Which as I’ve learned is a saving grace. Not everyone does. That’s kind of the rub. The risk profile on opioids is a bit worse because some pharmaceutical executives lied about the percentages of people who get addicted. Or who found it’s side effects pleasurable in the absence of symptoms. They did not lie about the benefit of not being in pain.

And that ought to give you a good sense of the problem at hand. The iron law of prohibition strikes again. A massive bureaucracy imposing a fix that intervened in crude and inflexible ways is causing more suffering than it fixes. It wasn’t the intent but it is the outcome.

The iron law of prohibition is a term coined by Richard Cowan in 1986 which posits that as law enforcement becomes more intense, the potency of prohibited substances increases. Cowan put it this way: “the harder the enforcement, the harder the drugs.”

Because doctors were lied to about the risk profile of certain types of opioids in the first place, the backlash is now as bad as the original sin the pharmaceutical companies committed.

Regular law abiding people are getting fucked in their treatment plans because hard enforcement is making it harder to get the low dose drugs. We treat Tramadol users with arthritis with the same tools as as criminals addicted to illegal fentanyl. I know shocker that the American federal government can be as evil as Purdue.

But also historically you know it’s true. And now a huge portion of normal people like me, who just want the benefits of not being in constant pain, are being turned into an over surveilled over controlled population. And I’m not saying there are no risks. But who do you want deciding that? A doctor who knows you well? Or the government? Yeah I’d pick the doctor too.

Categories
Internet Culture

Day 599 and The Lamentations of Their Women

A bunch of people asked me about what happened to me on Twitter over the weekend. I’d been hitting a bunch of different niche communities like startup Twitter, finance Twitter, doomer Twitter, and discourse Twitter with a thread that has a bunch of extremely extra and occasionally outright hostile weirdos saying reactionary shit.

I think it all started when my friend Ashley wrote a post about the commodification of women’s bodies. She was responding to another piece of discourse and found herself getting dog piled by one of the most irritating but unavoidable portions of the the internet; reactionary angry young men.

I didn’t like that Ashley was getting ripped for functionally agreeing with right coded, socially conservative men. I thought “damn, you can’t win with them”.

Entering the Fray

I decided to jump in and tease some of these boys. My inner child loves to shitpost as she finds humor and playfulness protective. I promptly got blocked. I went about my business. Now that I live on our homestead in Montana, I’ve got a lot of chores.

But I couldn’t leave well enough alone. I kept discussing the damn discourse. I expressed my concern that we’ve got such an intense population of reactionary young men who act as if they are perpetually victimized. I expressed empathy for how men are getting screwed and mostly got told it is women’s fault. It did some numbers but it wasn’t going into a context collapse situation just yet. Basically another day on Twitter.

The thread started out with all of the empathy and good faith I’ve come to expect from niche Twitter. We avoided purity politics. Tucker graciously discussed his own journey and how he let go of anger and began taking responsibility for himself and his family. Jack made some jokes. A number of internet friends discussed the varied ways they handled the systemic discrimination that some masculine virtues experience in modernity. Much wisdom was shared about how different they had grown up to be men.

Later that night I wrote a throwaway post about how we’ve got a crisis of masculinity and maybe only other men can get through to angry young boys? I suggested that perhaps right coded men who discuss modern masculinity would have an easier time reaching them. I tagged Tucker Max and Jack Murphy as men who seem to have done a good job taking responsibility for their own lives.

I basically went to bed with a sense that people had been good to each other. And I didn’t really notice being quote tweeted by a niche main character in groyper Twitter or what it would mean for my tomorrow.

It Escalates

His thread contained the following:

  • A very intense discussion of the ethics of doing butt stuff and posting about your experience with polyamory and cuckcolding.
  • The ethics of charging for coaching and clubs and whether one can have masculine virtue if your wife sleeps with other men.
  • A surprising amount of hysterics about what constitutes hypocrisy if one claims to be masculine.

Basically a bunch of people who haven’t figured out their own shadow lives told me exactly how uncomfortable they were with other people’s sex lives.

But honestly it was just so much fucking butt stuff.

Unfortunately that visibility of discourse meant I suddenly got flooded with harassment. A coordinated re-tweeting campaign began. People started digging into back posts and old news headlines. My direct messages got flooded with threats against me and my husband. It was definitely enough that we started thinking about security around the homestead.

I can only assume someone’s group chat or some message board was like “look at the phenotype on this bitch”. And to be fair, some people came with good jokes about venture capitalists moving to Montana. But then there was the graphically racist, as in, “oh we still have Nazis” plot twist. I realized I might need to actually start blocking people. I felt modestly disappointed as I hadn’t been dogpiled in a long time. But protecting myself was more important.

Why

Now you can ask why am I even stepping into these spaces if they contain this kind of abuse? What can I say there is a part of me who enjoys a frisson of danger. The feminine urge to protect our menfolk often runs head long into the reality that they can be dangerous. Walking into male spaces has inherent risks if you take up space in public life.

I have to be honest honest with myself that there is a breed of men who considers all public spaces to be male. I am an offense to them even if I am in the process of lamentation for our men. The space I take up by existing with different preferences is proof enough I am an enemy to be subjugated.

So I guess I owe anyone I teased about blocking on Twitter an apology. There are some people in too much pain out there. And I am not in anyway responsible for their emotional health. Only they can choose to let go of the pain.

Categories
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.

Categories
Chronic Disease

Day 591 and Normal Sunday

Having a modest disability like chronic pain (I have a form of arthritis in my spine) means I can’t always be physically active for an entire day. I need to lay down flat sometimes to relieve pressure on my spine and I can be fatigued from the persistent pain. It’s something I have to work around even if it’s not completely debilitating.

I’ve worked hard to control the disease. But it has meant a lot of days where normal activity had a poor return on the energy invested. If had a day where I was on my feet for hours at a time I’d probably pay for it the next day with extra time laying down. So I try to limit unnecessary activities.

I’m giving a lot of context that might not be necessary for regular readers of this daily chronicle that know me. But it’s not always easy for me to do what normal people take for granted. Imagine a day where you wake up, shower, cook and clean up after yourself, you go to work, you run some errands, you exercise, you come home to cook and clean some more, you care for your family and maybe you enjoy a hobby. A regular day.

I named ten activities you do without thinking. If I want to avoid hurting myself or using too much energy in one day, I have to pick two or three of those things. You might not be surprised to learn I pick showering, work and my health routines.

If I’m having a good day, I can add on additional activity or two. But it’s probably something I can do laying flat on my back. That’s how Twitter became a central nexus for socializing if you are curious.

So having given paragraphs of context I hope it allows you to understand my excitement about having an absolutely normal Sunday. This morning got up. I made food for myself. I went for a forty minute walk. I did my entire biohacking routine. I went to a nursery to see about some options for the orchard. Then I went to the grocery store with my husband and we did the shopping for the week. Then we did some chores on the new homestead. A truly astonishing about of activities for someone like me.

And even after all activity that I felt well enough for a long shower (often a painful activity as hot water swells my joints). It’s 5pm and I’ve been up and about since 8am and only laid down just now to write this post. And someone I feel totally fine.

Shortly I’ll be cooking mushroom risotto for Sunday dinner. My husband is the cook of the family but for some reason Arborio rice is his nemesis. He’s never made a decent risotto in all the time I’ve known him. Typically after a day with this much activity I’d never even consider cooking. But I’m having a normal Sunday and doesn’t it sound nice to make something a little more involved to eat?

Categories
Emotional Work

Day 585 and Rip Off the Trauma Bandaid

I hope I can capture even a fragment of my emotions as I am on the other side of several hours of post-moving therapy. And I am drained but also armed with more wisdom than when I started the effort.

Moving is obviously a traumatic experience for most people. Anyone who moved as a child has some memories of how the change revealed new aspects of who they are and what makes them feel safe. Parents worry about it a lot about moving and for good reason. I know my mother certainly did and she did her best to protect me.

But we know that life is chaotic. Any type of change is already in a dance with accelerating entropy. Expect your unfinished shit to get drawn into the accretion belt surrounding the event horizon of your fears. Black holes are scary because we know they will kill us unless we commit enough energy to the fight to escape.

Sometimes some parts of us don’t make it. They become lost to the nothing. The dark impenetrable inversion point where we are forced to face the powers of destruction within us. Of course, it’s natural to sacrifice some part of yourself to banish the demon we know to be who we are.

It’s actually shocking to realize that inside of you might be some kind of personal Kali ready to rend the apocalypse at your weak side. But then you try not to think of it too much right? You’d rather ignore your demons right. Don’t feed the wolf right? Feed the good they say.

I am here to tell you that the shadow exist even if it scares you. It’s pulling you in just like that black whole. You can fight it your whole life. And maybe you win. Maybe you have that kind of fuel.

But if you ignore that shadow you will be pulled in it no matter what. Wouldn’t you rather run the calculation on how to achieve escape velocity? It’s going to be expensive. But it’s better to know the costs of living.

Categories
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.