Tag: Medical

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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.

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Internet Culture Politics

Day 326 and The Long Now

A culture lacking optimism is a culture without a future. Even before the pandemic, American youth had plenty of reasons to temper their optimism. Inequality, corporate dominance, rising debt particularly for school, unaffordable housing, lack of social support for family, the changing climate and the frequency of natural disasters all tend to weigh on you.

I’m a optimistic person so I always presumed I’d find a way around things. And I largely did. I got an education. I started my own company. I sold it. I found I had developed a valuable skill set. I met a man through one of my best friends and we got married. All was well in my American dream for many years.

But cracks had always been there. Little details that made me question common cultural, social and political assumptions. I discovered the limits of modern medicine with a chronic disease. I saw the disaster that financialization could wreck on families with a bankruptcy. I wasn’t naive about our systems and their inequalities.

But the knowledge that the future could be worse than today wears on you. Once you start living in a liminal state it gets worse. The pandemic made it harder for me to believe in the future because the present became a holding pattern. Ben Hunt at Epsilon Theory calls this The Long Now.

The more we put off investing in a future the more the long now stretches on. We borrow against all the things that could build us a better tomorrow. And we fall back. We put off doing things that would make our future better because it’s rational to do so. What if things get worse?

I’m tired of living in the long now. I’m investing in myself. I have been investing in my body and my health. And I’m ready to invest in a home. Not because I particularly want to own property but because I want to stop the long now and believe that my future is something I can build.

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Preparedness

Day 325 and Preparedness Reading List

Since I’ve been yakking on about being a prepper recently I thought I’d take a moment to share my recommendations for thinking about a more resilient life. They range from the extremely practical to the oh shit I hope I never need this information.

Homestead & Practical Skills

Escape the City by Travis J Corcoran is literally pound for pound the best value in preparedness. It focused largely on folks who want to build up a piece of land or otherwise want to homestead. But it’s extremely practical advice on everything from planning a home to what tools and skills you will need.

Encyclopedia of Country Living by Carla Emery: an absolute classic with everything from recipes to practical how to guides. If you want to see what practical skills might be for you this is a great start.

Back to Basics edited by Abigail Gehring: it’s not as comprehensive as Carla’s encyclopedia but it’s a bit more accessible if you want to think about gardening, food preservation and the like.

Land book by Neil Shelton: a very specific little book on how to evaluate and buy rural properties for families.

Emergency & Disaster Preparedness

Beginners Guide to Emergency Survival Preparedness by Jeff Kirkham and Jason Ross: these dudes write the Black Autumn series which is a weirdly racist but packed with surprisingly good detail fiction series. Their beginner guide is actually short and reasonable information on preparing for the 3-10 day emergencies.

Urban Preppers with Pets and Kids by James Mushen: exactly what it claims. I used to be an urban prepper and it’s one of the first books I read after Hurricane Sandy got me prepping. Likely the first place to start for most of you.

Philosophy

Lean Logic by David Fleming: it’s subtitle is a dictionary for the future and how to survive it. This isn’t practical so much as a deeply comprehensive look at a world that isn’t flooded with cheap oil and requires a more decentralized approach.

First Aid and Medical

The American Red Cross First Aid & Safety Handbook: pretty self explanatory. This is the text everyone uses when they get certified.

The Survival Medicine Handbook by Amy and Joseph Alton: preppers love this doctor and nurse husband and wife duo. The book is super practical and frankly you should pray you never need it. But if you are outdoorsy you appreciate that medicine looks different if a doctor isn’t on the way to help.

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.

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Biohacking

Day 318 & Boring Health

The word wellness has become so comically performative that I cannot use it with a straight face. It would require so many disclaimers and apologies and contextual additions to move it beyond the associations with wealthy white women (thanks Gwyneth) it’s not worth the bother. But it’s also equally true most people do not feel well. The feeling of being healthy eludes us.

Our health degrades more quickly than we’d imagined, as if planned obsolescence wasn’t a term for software, but rather a term that describes our bodies as we move beyond our twenties. It feels intimidating to try to staunch the flow of time.

We acquiesce to our obligations, our stresses, our weaknesses and our limits. And our health degrades further. And with each turn of the wheel it seems even more impossible that we could feel any other way. But I promise you this does not have to be your life. You can feel well. I’ve come back from the brink of chronic disease. It is possible. It’s just all extremely boring and time consuming.

It’s hard work and it’s boring and repetitive and frankly your work won’t show results for months or even years. But you are not doomed to lose your health to outside forces simply as a consequence of time, stress or overwork. I’ve written a beginner’s guide to biohacking as well as an introduction to supplements. Anyone can pick up the basics and begin to improve how they feel. Just don’t expect miracles. And yes it’s a position of privilege to pursue most of it. But there are ways.

If you look at one of my typical days I split a third of my life into some type of preventive work. Just in case anyone ever wondered why I don’t socialize much. I put most of that time into my body.

I sleep a full eight hours. I meditate. I go to therapy and group every single week. I do full body compound lifting three times a week. I do steady state cardiovascular work an hour every day. Ok that’s just a fancy way of saying I talk long walks. I take my vitamins. I eat protein and vegetables. I stretch. None of that is privileged or even interesting. It is just slow boring work that builds over time.

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
Biohacking

Day 307 and Cortisol

I had a couple nights of bad sleep. Because I’m the sort of dork who tracks, well, everything, I knew I had a crash coming my way. Naturally I took to Twitter to meet my biohacking needs and asked for tips on how to lower the stress hormone cortisol. And wow people must be stressed as hell as I got hundreds of responses.

Cortisol pumping constantly is what happens when you are in fight or flight stress mode. Being in a parasympathetic state is good sometimes because you can’t be stressed all the time. It will kill you.

Using a tracking app called Welltory that incorporates manual HRV readings and my Apple Watch this is what I looked like this morning. The red and choppy fluids are supposed to signify that I’m not doing well and losing energy.

So I started taking as many pieces of advice on the thread.

  • Meditated
  • Went outside for sun
  • Took extra vitamin C
  • Took ashwagandha
  • Sang to reset my cranial vagus nerve into parasympathetic
  • Used a Theragun to massage everything
  • Went for a walk in the woods
  • Took a cold shower
  • And then said fuck it and took a benzo because it’s not all holistic

All that effort seems to have paid off because a few hours later Welltory was telling me maybe I could use a little more stress in my life. I’d like to think it was the meditating and herbs but sometimes also pharmaceuticals.

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
Chronic Disease Preparedness

Day 286 and Appointments

I’ve been going to a bunch of appointments in the past week or so. And I’ve got a bunch more lined up in the coming weeks. My calendar is a mess of obligations; optometrist, dentist, gynecologist, and the hair salon for starters. I feel like I’m drowning in appointments.

I made the mistake of not capitalizing on the last dip in case numbers in the late spring and early summer and missed the pandemic window before delta. I didn’t want to make that mistake again so I’ve been hustling to have the appointments that I’ve been putting off for the last 19 months. Check my eyes, check my teeth, check my fiddly bits. And yes cut my hair. God is my hair long.

There is so much maintenance work that has been piling up that I wonder how I’ve made it through the entire pandemic putting all of these life chores off. Has everyone been putting off their appointments? Was it just me? Or is it just people who are still trying to limit their exposure to infection?

I grant I’ve got a very different risk profile than the average American but I feel like it’s probably not unusual to put off stuff you are supposed to do but can probably live life without. But should you? So far no one has found anything wrong but maybe it’s just luck that I could go for two years without someone checking my tits or my teeth.

I didn’t put off any of my truly crucial health appointments over the pandemic but I am sure other people did. The eye doctor is something I tell myself I can put off for two years but maybe that’s a rationalization. Did others do that with annual physicals? With breast exams? What else have we been putting off in our appointments. It feels like I put off my entire life. And now I’m scrambling to fit it all in before something else has happens.

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.