Tag: Disability

Categories
Biohacking

Day 742 and Careful Balance

I don’t think I’ll be getting my best writing out today. I’m plugging through my work while balancing out my personal chemistry against my obligations.

I am a bit scared to find myself balancing a delicate body chemistry in a foreign country. I don’t care much for taking a steroid like prednisone but when it’s a choice between hives and yellow weeping eyes or a modicum of comfort, you pick comfort.

It’s of course not without its side effects. Steroids make you feel great till they make you feel a bit crazy. They are very good at tamping down every reaction your body has which can ironically give you some autonomic issues. For me it can feel like I’m in fight or flight.

I left my Airbnb as the more I tapered the steroid dose the worse my symptoms got. I’m a little concerned about fighting Airbnb for a refund but better to lose a few hundred dollars than need steroids. I did find a very nice and crucially clean hotel that will do the trick for now.

Categories
Biohacking Emotional Work

Day 733 and Rollercoasters

I felt amazing last night coming out of my weekly therapy block. I was emotionally present. I was kind to myself. I felt like I was making progress. What a way to kick off the New Year I said to myself. I was riding a high.

I went to bed at my usual time feeling relaxed. I definitely thought I was doing the moisturized, thriving, in my lane meme perfectly. But then I woke up at 1am completely alert. Fuck.

I usually have more trouble falling asleep than staying asleep. Coming down from an emotional high like therapy can often take me a few hours. But every once in a while, I will wake up in the middle of the night and find myself unable to fall back asleep.

I felt like I was on a roller coaster. I was up then I was down and then I was up again. I was energized and completely awake for three hours in the middle of the night.

The sleep hygiene folks tell you it’s best to get up and do some sort of activity if you find yourself awake during your normal circadian sleep cycle. I decided to read a book.

I’m in the middle of Tomorrow and Tomorrow and Tomorrow. It has been recommended on numerous “best of” lists. I am enjoying it quite a bit as it’s about friendship, a gaming startup, disability and creativity.

Eventually I felt myself getting drowsy around 4am. According to my sleep tracker I was in and out of light sleep until around 6am when I finally transitioned into deep sleep. The rollercoaster had ended its ride.

Categories
Medical Startups

Day 696 and Edge

I’m enjoying a migraine this weekend that was both strong and as of yet unbeaten. Perhaps I overdid things on Thanksgiving and Black Friday. But I’ve been stuck in bed in a dark room for the last 48 hours or so.

While this sounds a bit miserable, I can assure you it is also part of my edge. When my physical works shrinks my cognitive capacity unfurls. I very much liken it to the traditional super hero dilemma of being gifted with something that makes living a normal life a challenge.

I may be stuck inside struggling with light, noise and smell but I can still do most of my core deep work. I can’t take calls or go to meetings but I can be on my phone and my Kindle. I can intake information and I can synthesize that information when I’m in darkness.

And that is 90% of my job. Be informed and make the best decision you can. Those decisions are generally done when you are calm and fast. And I get the benefit of being in rest and digest as often as possible as it’s what keeps me alive.

I’ve got a generalized theory related to finding one’s edge. It’s pretty simple. If other people perceive it as a weakness but you understand how to wield it as a strength then your got an edge. People dismiss you sure. But being underestimated is one hell of a way to get on the better end of a trade.

And so while I’m here looking like I might not be worthy because of some set of heuristics that’s have typically worked well for you I’m actually the one that has a leg up on you. You would do well to think about all the ways in which you can leverage talent and insights that trade below their value. You can make a lot of money betting off of truly underestimated viewpoints.

Categories
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.

Categories
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.

Categories
Emotional Work

Day 647 and Socializing

I thought I was being quite careful this weekend about not over socializing. Last weekend I was hitting up pancake breakfasts and running errands and I thought I was going to pass out come Monday. So I was much more conscious of needing to rest and privacy this weekend.

But no matter how much I dial it back it seems like any amount of interaction is just too much. I backed it down to two hours on Thursday, Friday and Sunday with a recovery day on Saturday. But here I am on Sunday afternoon fighting off a migraine from overstimulation.

Folks bitch and moan about Zoom and how it takes away from the human element of interaction but fuck me if that isn’t the entire appeal of it to me. I myself prefer asynchronous communication to buffer myself even further from the onslaught of audio, visual and emotional inputs. But I’ll take a day full of Zooms as it’s still so much less input.

Perhaps the downside of having the hair trigger central nervous system of an autist is I am simply absorbing more from the inputs than the average person. Every noise, every visual cue, every smell is hitting me. Others may need all those cues but I absolutely do not.

I wish there were a way to articulate this to friends and family that didn’t make people feel rejected. But socializing in person is simply so taxing for me that I need much less of it. And it’s not because I don’t like you. It is just because I’m absorbing way more of you than you think!

Categories
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.

Categories
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.

Categories
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
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.