Tag: Disability

Categories
Medical

Day 336 and Inaccessible

I’m probably still in shock. The last 24 hours have been a whirlwind of favor trading and phone calls and begging as we try to figure out the extent of the damage to my ankle. Something is broken but still need an ultrasound and an MRI to assess a full recovery full protocol. We are mostly hoping I can avoid surgery. But we will know more once I meet with the orthopedist tomorrow.

The only upside to this mess is living in Boulder Colorado we’ve got access to the best sports medicine on the planet. We were able to get excellent recommendations on in orthopedic specialist and thanks to wonderful friends secured an appointment within 24 hours.

I’ve also got an incredible primary care physician that has spent the day putting together all of the basics for healing and recovery. She thought of everything from bandaging to mobility aids to supplements. And she makes house calls.

I am however pretty shook up and in a lot of pain. I misjudged crutches this morning and took a terrible fall trying to get to the bathroom. You never notice how inaccessible the basics in life are until you need help getting onto the toilet. I am going to need round the clock help for a bit until we figure out how to install things I can lift myself up on. So maybe my upper body still will improve? But otherwise it’s pretty dehumanizing.

I’m also stuck on the top floor of our three story townhouse as the only way to get down the stairs currently is on my ass with the scoot and lift method. Thankfully Alex doesn’t seem to mind me using his office desk as a dining room table for a bit. They are too narrow to carry me down so this will be a bit tricky for the time being. We can’t have me on the middle floor as there is no bathroom and the downstairs doesn’t have a bed so this will have to do for now.

Categories
Chronicle

Day 335 and Ankle

I was going for a walk and misjudged coming down a stair. We’ve got tiny stairs of rock and wood and hand poured concrete in the courtyard of our complex. They aren’t the most even. I don’t know how I came down so hard but Alex said he heard something as I came down. I tried to get back up and put weight on my foot and immediately collapsed. I must have screened loudly as everyone came running.

I couldn’t make it up the stairs to get back into the house. I had to scoot myself up the stairs using my arms to lift me and shimmying my ass. I kept trying to test if could manage any pressure on it. I had tears running down my face and my iPhone giving me tachycardia warnings.

I initially crawled myself upstairs to get in bed so I could elevate and ice. We weren’t sure if it was a sprain or an actual broken bone or ligament. We called around to see if anyone had doctors who made house calls. The last thing I wanted was a four hour emergency room visit while I was in excruciating pain. But eventually the feedback from a virtual visit was I needed X-rays as it’s not a good sign that I can’t apply any pressure to it.

The urgent care center got me a boot and crutches and I’m waiting on the X-ray results. I am so angry as I don’t want a random health thing requiring surgery and physical therapy and months off my feet. I feel like I just got to a great place with my health recently. To have a set back with my existing issues would have been more of the same. To have something new feels profoundly unfair.

Categories
Biohacking Chronic Disease

Day 322 and 10x

One of my favorite hobbies used to be powerlifting. When I had to take time off to control my ankylosing spondylitis (it’s an inflammatory spinal condition) I was simply in too much pain to walk around the block let alone squat 250lbs. But as we’ve controlled my symptoms so efficiently I’ve been able to pick back up weightlifting this fall. I’m overjoyed as this represents full recovery to me.

I’ve been slowing introducing weight using the core barbel lifts using the Starting Strength method. It’s been a blast as I get to have beginner gains all over again after being sedentary. The biggest change in how I train compared to my time before managing a rheumatoid condition is timing my training around my recovery. I used Whoop and Welltory who both measure my HRV or or heart rate variability. It’s basically a measure of how well your autonomic nervous system is coping with stress and turns out to the best predictor of how well I will feel on any given day.

A recovery chart of my HRV with red marking the days I lifted.

I’ve noticed that lifting hits my HRV hard. And it takes time to get it back to a normal place. Sometimes several days. I absolutely cannot not push my recovery frame without making my HRV dip even worse. It’s fascinating to see how well correlated the two appear to be.

On days when my HRV dips my resting heart rate is noticeably worse and using an app like Welltory I can see much more stress I’m under and how damn active my sympathetic nervous system is at work. The stress of recovery is significant. And my symptoms will tend to flare. Pain and fatigue are noticeably worse.

Despite the evidence I have found it mentally challenging for me to trust this stress and recovery process. On bad days when my HRV dips I forget how well I felt on the good days which leads me to some emotional flailing. Instead of trusting the routine I’ll panic at how shitty I feel. I’ve got amnesia about how terrific & productive I can be.

I’ve got to learn to trust the numbers. Otherwise I’ll do stupid shit like push to get something done on a bad day. That activity will take hours of hemming and hawing and willpower and brute force. If I had just waited for a good day to get my shit done chances are the task will take me 5 minutes.

Forcing myself to abide by the recommendations of Whoop and Welltory gets me out of the cycle of flailing. Listening to the data can override my amnesia. If a bad HRV day happens I just don’t try to do ANYTHING. Because I know on a good HRV day I’ll be 1000x more productive. It’s a discipline I need.

Everyone has different capacity. Forcing yourself into the “industrially necessary” routine of a 9-5pm weekday only makes sense if you are in a bigger corporate system and must be reliable even if you are not performing at your best.

Freeing myself from the mentality of being available on a bourgeois schedule is challenging. I hate feeling like I disappoint people by not always being “on” and productive. I feel like availability & reliability matter more than outcome (which is occasionally true but not generally true). The reality is you can have 10x Julie or you can have consistent Julie. I’d pick 10x personally.

Categories
Biohacking Chronic Disease

Day 311 and Conspiracy Care

The current “news” cycle is up in arms about a football player taking medical advice from a podcaster. Depending on who you read this is either a very bad thing or a fight against woke mobs and cancel culture. If you have no idea what I’m talking about there is no reason to dive in further. Don’t upset yourself.

People take advice from people they trust, and sometimes we trust people we perceive as being smarter or even as having higher social status than us. Shortcuts are part of life. And if you have access to someone, say through a parasocial relationship like social media, that you perceive as being well equipped to solve problems you will probably listen to them. Which is a point Eric Weinstein made about Joe Rogan and healthcare that I think is especially salient.

I think we have to understand that people are also looking to Joe as a pass-through for concierge medicine. If you have brilliant Uber-rich people in your life you hear a lot about medicine you can’t afford. Whole body work ups. Multi day examinations. Lots of medical gear.

I didn’t used to have much health care. I went to free clinics and doctors who I could pay $50 cash to for antibiotics without a hassle. It’s probably little wonder that when I had real health care issues I wasn’t prepared for just how bad most care in America is even with health insurance. I thought I’d get good healthcare with a nice insurance plan. But it mostly sucks. I got dismissed, ignored and generally not diagnosed for almost a year. And then I figured out how wealthy people do medicine. And I began healing.

Holy shit is it night and day different what spending real money outside of your health insurance will do. Like Joe I get concierge care. And to the advice I get is pretty far off what you hear from a baseline healthcare practitioner like say the doctor who can only see you for 20 minutes and can’t risk anything that isn’t clearly proven and approved. But someone who doesn’t answer to a big hospital system? They turn out to be much more flexible and will help you work through the risk and reward (and also cost benefit) of a host of different tests, treatments, supplements, devices and diagnostics.

And over the course of about three years I went from functionally disabled and completely unable to work to, well, basically fine. Three years ago I could barely walk and now I’m back to powerlifting and hiking. But the sick thing is I am certain if I were a plebeian I would be on disability for life. I would have at best been prescribed pain medications and left to rot and potentially develop an addiction or two.

So is it any wonder that in a country with a mass chronic disease issue we’d look to wealthy proxies like Joe Rogan and imitate what he says is his care? Fuck no. It’s downright immoral and condescending to suggest that the victims of American healthcare systems shouldn’t try to help themselves. No one else is stepping up to pay for their healthcare.

What is a genuine issue is that without context and a team of professionals you might accidentally become a victim to conspiracy theories. Which is exactly what we’ve seen with a number of Americans. But the line between conspiracy and simply untested or unproven treatment is a lot blurrier than I expected. I had concerns I’d be taken advantage of by functional medicine doctors and holistic practitioners. And surprisingly that just didn’t happen. I was always given context, research, second opinions and supported in making as informed a decision as possible. Doctors are collaborative by nature and my team has encouraged me in my efforts to test and trial a lot.

This kind of care does not come cheap. I’ve spent close to $80,000 on concierge care services over the past year. This includes everything from diagnostics & testing to compound pharmacy and off label pharmaceuticals (get metformin just trust me), to a host of medical devices and treatments as well as the hourly cost of a primary care physician, a prescribing & case physician (it’s not uncommon for different doctors to do medicine management so as to monitor your entire case for interactions) and clinical nursing. Like I said, if I didn’t have money I would still be on disability. I’d estimate only 20% of my progress came from before I went to a more personalized approach. Medicare for all isn’t going to deliver you the kind of care I got.

I don’t really have a takeaway or solutions here. Most people don’t have complex chronic diseases nor do they have the need for the kind of last 20% health optimization that the billionaire class go in for either. But you can do a lot on your own. A lot of health is just preventative care.

I’ve shared a basic biohacking guide for beginners before. Replacing fat with lean muscle and getting your basic nutrient and fitness profile improved should do a lot for many of you (not true of chronic disease patients that’s complex). After you’ve done the basics on your fitness, body composition, and sleep hygiene for 3-6 months you can move on to supplements. You maybe surprise at what you learn and how much it deviates from what is common knowledge about health. Here is a little hack to save you time. Eat protein, lift weights and get sunlight. And stop looking down on people just trying to survive. That makes you feel better too.

Categories
Emotional Work Politics Reading

Day 306 and Shortcuts

I never really thought of myself as a perfectionist. But I have impossibly high standards for myself that may be unproductive.

While I’m sure some of it innate, some of it is nurture. I went to a school system called Waldorf Schools that didn’t have grades. Every child was evaluated against their individual performance and each class was deliberately taught to the best student in the class not to some perceived middle. That’s left me with a habit of always believing I can improve and also the expectation that our average performance must be comparable to the best.

Of course this is unrealistic if one continues to climb up social, economic, intellectual and cultural ladders. I kept looking for my limit and then finding a new mountain to climb. Know I know there will always be mountains. And that perhaps it’s ok to take some shortcuts on your journey.

I really struggle with shortcuts. So am forcing myself into taking some so I can let go of some of my impossible standards.

I don’t scan books. I read them. So I bought a really bad prepper novel and am forcing myself to take shortcuts in pacing and focus. It’s so bad I don’t have a choice. I have to skip a lot or else I just wouldn’t finish.

I had to go to an appointment today. Normally I’d be sure to shower and wash my hair if I need to be in polite company. I showered yesterday but I just didn’t feel like going to the trouble two days in a row. So I put dry shampoo in my hair and opened up weight wipes for my nether regions. I doubt anyone would have noticed but a shortcut in my grooming routine was pretty liberating.

Today is also Election Day. My hometown has a bunch of local ordnance changes and some important bond related measures. It’s also city council elections. I’ve been following all the ballot issues but I just couldn’t find any city council people I liked. I read all the local papers and they all suck. None of them remotely come into my preference wet. So I took a shortcut. I voted on all the ballot issues and left the city council blank. I just wasn’t going to spend any more time picking lesser evil candidates.

These may seem like pretty different issues and maybe I’m also not fully committed to my civic duty (I’d argue as a democracy it’s a right to abstain from a vote if your conscience cannot condone it). But the point is that instead of getting bogged down in every unrealistic expectation I had of myself I could just take a shortcut.

Categories
Biohacking

Day 297 and Day of Rest

October has been a whirlwind for me. Or maybe it just feels busy getting back to a normal pace of life. I had a shitty end of summer as part of an effort to decide if and then when to take me off my immunosuppressive medications to get me vaccinated so I could develop antibodies. Maybe anything would feel busy after that.

I lost about six or seven weeks to the whole vaccine situation. Thankfully nobody cared since it was August. But I cared. I didn’t do anything for weeks from all the side effects and management of the process. I only bring this up (and I should write a full post about getting vaccinated as I wrote one about the decision and its risk management) because it’s been a while I needed to actively rest.

I had nearly two months where I didn’t couldn’t pursue any strain like weightlifting or even hiking because I was under enough strain from my own body. And I know this because I used a Whoop to track recovery and strain. Biohacking is a bit of a hobby. I had low strain scores and virtually no activity. I spent all my time in what Whoop calls recovery. But not this week. This week I had strain. And then I learned what a poor recovery from too much strain looks like.

A Whoop recovery score of 32% based on a terrible HRV of 13. Plus I’ve got tachycardia.

This week in addition to a significant workload (ask me about my rolling fund if you are into that sort of thing) I decided to pick back up my powerlifting hobby. I changed up my diet to eat enough protein and calculated out new one rep maximums for a basic starting strength routine.

It felt awesome. Squats are the best. And my overhead presses were better than I imagined. I had this moment of hope that maybe I was well enough to train again after several years of health trouble. I felt empowered. I was working through the delayed onset muscle soreness with a Theragum (something I normally cannot tolerate with my past inflammation levels). I was doing range of motion restoration work. I thought I had it all under control. And then on Friday I saw my resting heart rate variably or HRV start to drop.

I thought oh shit I must be getting sick. Normally a dip in HRV is a hint that my inflammation in my spine will kick back up and all the exciting secondary health stuff like fatigue (from pain) and migraines (from the shitty circulation from the inflammation) will go in circles.

But it turns out that I’m not getting sick. My symptoms didn’t flare. Instead I was tired.

Honestly I’m a little pissed. Normally I only take rest days when I feel sick. I only feel tired when I am sick. This being tired and having my heart be strained because I was overworked physically is bullshit. Normally if I am tired it is because I am fatigued. I mean that feeling you have when you are sick because your system is going haywire. It’s not the same thing as tired. Being tired isn’t debating. Being tired is actually great. I just need to take it easy today because I did too much. Not because I’m sick. Thank god it is Sunday so that day of rest is well timed.

Categories
Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.

Categories
Chronic Disease Emotional Work

Day 267 and Morally Neutral Accommodations

I resisted the idea of investing in a zero gravity chair. Because of my spinal condition, I find it more comfortable to work for extended periods when laying flat. Working from bed isn’t exactly ideal, emotionally or practically. And yet I wasn’t ready to sink a significant investment into my work station. Thankfully I ended my procrastination this week with the arrival of my new altwork station.

Altwork desk in a zero gravity position

It was a significant expense but I can now comfortably spend a full workday in a chair without any adverse affects. The only downside appears to be good old fashioned tiredness at the end of the day. I’m thrilled with the investment.

I wonder why I resisted the idea of investing in a comfortable desk for as long as I did. Maybe part of it was shame that I needed what felt like such an extravagant accommodation. I didn’t feel like I was worth it. Or perhaps I felt a disability isn’t something I wanted to invest in. It was something I wanted to invest in overcoming. Spending money on making my life more comfortable and functional with my disability was hard for me to swallow.

I felt if I worked hard enough at managing the symptoms of my ankylosis that perhaps eventually I’d be able to manage sitting at a regular desk for a full work day. But what kind of fools errand was I setting myself on that I desired not only discomfort but to work myself up to enduring even more discomfort? My goal was to make myself uncomfortable.

I’ve long frustrated my doctors by resisting pain management medications. I tell myself I should grin and bear it when it comes to pain. I treated pain as if it were a moral good. I suspect I was doing something similar with resisting a comfortable chair. I’ve got a problem with equating suffering with morality.

Thankfully I was able to set that aside and buy the zero gravity chair. Now rather than suffer and tell myself I’m a better person for it, I’ll actually get my work done in comfort. Which should have been the goal all along.

Categories
Aesthetics Internet Culture

Day 264 and Shiner

I’ve been eyeing the full recline zero gravity chairs and desk combinations for a while. Because of a spinal condition sitting upright at a regular desk is tiring for me. It seemed like an extravagant purchase as they are well over $4000 at a base model but being able to spend a full work day in comfort reclining seemed worth the investment.

The Altwork chair and reclining desk

Last week I finally decided to pull the trigger and buy the chair on the advice of executive performance coach Dr. Julie Gurner who helped me see that investing in an environment that accommodates my physical needs is worthwhile.

Today was set to be the big set up and reveal day but in the excitement Alex was trying to take a picture of me laying flat while working and he dropped my phone form about three feet over my head onto my right ocular bone. It hit so hard it formed a blood bruise immediately. It was such a shock I didn’t even yell. So rather than playing with my new desk I’m icing my face.

Blood bruise from a phone hitting my face while photographing my new chair.

It hurts like hell. My face is swelling and I’ve got that jumpy nerves thing that comes from a physical trauma you didn’t see coming. So tomorrow I’ll finish setting up my new workstation. Right now I’ve got to stave off a shiner.

Categories
Emotional Work

Day 252 and Women on the Spectrum

I’ve always been an introvert, but this tends to surprise people as I socialize reasonably well. You wouldn’t guess that I find being around others overwhelming and exhausting. I asked on Twitter today if anyone else ever got sensory overload?

I’d accidentally stressed myself by combining an intense physical activity with an intellectually demanding one, forcing myself to process touch, sound, and audio. I received a lot of interesting replies back but one friend asked me gently if anyone had ever tested me for the autism spectrum.

I had not ever considered it. The typical struggles I associated with non-neurotypical spectrums weren’t ones I personally had. But he showed me a fascinating article on how women get missed in diagnosis as their patterns are quite different. What I thought of as autism is the dominant presentation in men. In women it shows up differently for many of them. Naturally it is less studied than in boys and men so we’ve got less scientific study to go on. But these presentations all match me. Do please keep in mind that I don’t know anything about the space, it’s politics, or what is or is not appropriate so go easy on me. I’m just noticing that these are patterns I see in myself.

  • Work very hard to “camouflage” her social confusion and/or anxiety through strategic imitation, by escaping into nature or fantasy, or by staying on the periphery of social activity.
  • Show different sides of her personality in different settings.
  • Be more prone to releasing her bottled up emotions at home through meltdowns.
  • Be exhausted from the work of deciphering social rules or of imitating those around her to hide her differences.
  • Be anxious in settings where she is asked to perform in social situations.

This is interesting enough to me that I’d like to explore further if I might be slightly on a spectrum. Perhaps the exhaustion I feel from socializing is more than simple introversion and should be treated as as something I can accommodate rather than admonish myself over.

I remember spending much of my life working hard to master and emulate social and class markers and behaviors. I didn’t find them confusing. If anything I made a study of it.

I became so good at social cues I would often get praised for it. But I often resented the energy these performances required. When I would express anger or frustration I’d be scolded, told I wasn’t a nice girl, or even told that I was a bad person for not wanting to spend time with people. As an adult I have the choice to use my energy and focus as I see fit.