Category: Chronic Disease

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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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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.

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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.

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Biohacking Chronic Disease

Day 601 and New Limits

The past couple of days have been super intense. Heck, the past month has been a lot. I passed out last night with my phone in my hand a bit after 9pm and woke up well after 8am this morning. My Whoop indicated I had high strain for the past two days and needed more recovery.

Still I went about my usual routines but soon found myself yawning and struggling to keep my eyes open after eating lunch. I felt lucky I hadn’t scheduled much today. I got back into bed figuring I would read a little bit. I kept drifting off. So much for being productive this afternoon.

One of my biggest fears is doing too much. Because I’ve been a workaholic in the past, I have a lingering sense of unease anytime I can tell I’ve been pushing myself for a few days. It used to be that my body would simply crash if I applied too much pressure, but as my health is at about 80% improved from my initial diagnosis I can no longer rely on such direct feedback.

I say that like it’s a bad thing but it’s a huge relief that I can modestly over do things and not immediately find my body crashing into a rest period. But it also means I have to be much more conscious of my own needs for rest and recovery as it’s no longer quite so obvious when I’ve done too much. This represents both a huge achievement for me and also a transitional moment in which I must find new boundaries.

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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?

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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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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 Emotional Work

Day 560 and Unstuck

Yesterday was a particularly challenging day for me physically. I described how I was becoming stuck simply because the pain to change positions, even if I was uncomfortable sitting up, was such an obstacle.

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.

Waxing philosophic about pain is clearly an ongoing theme of this daily writing exercise. I’ve got 108 mentions of the topic so yeah that’s chill. Considering it’s a daily accompaniment I’m relieved it’s not a larger number. Most days I am clearly able to become unstuck from the pain enough that other topics occupy my mind.

I am however not feeling great about how unstuck I feel in life this week. Perhaps it’s the combination of a symptom flare with the final countdown to the big move to Montana. It’s all waiting and anticipation and frantic preparations combined with physical struggle and fatigue. It does not make make for an environment where I feel I am best moving my life forward.

I am someone who very much relies on and feels embolden by willpower. The feeling that I can simply apply my intention to something and through that focus bring it into fruition is a super power. The American dream has been littered with manifesting energy. The Secret literally is our religion.

So I hope that, as I sit in this last waiting period before I confront massive change, I am able to let myself be. To not be obsessed with being stuck or unstuck. But just be in the moment I am in without judgement.

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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.