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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.

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Biohacking Chronic Disease

Day 287 and Routines

I haven’t figured out how to incorporate my routines into my busier workdays. I feel like I’ve written this blogpost at least 3-4 times but somehow I never seem to find balance easily when I make big changes to how I spend my time.

All the self care efforts that has become comfortable rhythms go by the wayside as soon as I add in new obligations. And then my body gets pissed that I’m not taking care of it and I get into the same pattern of two steps forward and one step back.

You’d think after experiencing this issue multiple times I’d be better at ramping change slowly but I remain the sort of person that loves to dive into shit head first.

After much enthusiasm and progress I’m writing todays post from a physically mediocre places. My stomach is upset. I am fighting off a migraine. My muscles are tense. I’m anxious about all of these symptoms turning into a messy cascade. So I’m turning to my pharmaceuticals, taking a mess of prescriptions, and going to bed. Maybe tomorrow is another chance to find a better balance.

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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.

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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.

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Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

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Chronic Disease

Day 240 and Working for The Weekend

I forgot how great it feels to be so enthusiastic about work that it absorbs every viable hour of your weekend. I used to feel this way about work all the time, but as I’ve struggled to adapt to working with a chronic illness some of the joy got stripped away. It became all about juggling self care, rest and moderation. And I hadn’t found my balance yet.

It isn’t so much that work didn’t hold my attention, on the contrary, rather I became afraid of letting myself get too absorbed. If I overdid it and missed a medication or a meal or even a sign that I needed a break I’d find myself in pain. I’d crash if I wasn’t careful to watch my time and energy.

I would get into awful start stop cycles that gave me the worst of both worlds. I struggled to sustain a flow state because I was constantly vigilant for needing to take care of myself. And I’d beat myself up when I needed the rest which made it even more challenging to sustain the health I felt guilty for not having.

“ I feel bad. I’m going to take today off. Ok but make sure you feel so guilty about it you don’t get any real rest.” Dino Comics

But something has shifted for me recently. The fear and doubt that has hung over my attention is lifting. I am beginning to trust that I can work and break without hurting myself. I can accept breaks more readily than I used to. I don’t feel as if I need to be as vigilant to watch for signs of hurting my body.

Today I was able to enjoy multiple flow states. I worked with a founder on their fundraise. I worked on some writing for my fund Chaotic. I briefly felt overwhelmed, and while I did panic for a moment I stopped and rested. I asked for some help. The problem got solved. And now I feel satisfaction at a good work say. No pain. No crash. No exhaustion. No guilt for taking breaks. Just the quiet joy of having achieved my goals for the day.

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Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.

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Chronic Disease

Day 223 and Actually OOO

I’ve got a nightmare of a migraine. Ironic that I should right at such length about being available or out of office yesterday only to find myself utterly incapable of being pretending today that I am available. If you want a better essay of the day then I’d click out to yesterday’s as the rest is just an exercise in willpower not quality.

If you’ve never had a migraine consider yourself lucky. I’m prone to about one a month and I’ll let you use your imagination as to why they are so regular on a monthly cadence

For this particular migraine the light and noise sensitivity are debilitating but today it’s the nausea that’s the worst. Somehow the pain and tension can be so bad you literally cannot imagine tolerance for food or smells. I’m struggling to drink water.

I can’t really fathom how I’ll have enough to say to qualify for “write every day” but here I am with the CMS open and typing out sentences that appear to be coherent. I suppose three paragraph with a few links, a title and the proper tagging qualify as showing up for the day. Every day I write. Every day some small creation. Even though at the moment I’m trying to work myself up to the idea of eating some rice in the hopes that I’ll be able to take some medication and settle my stomach. Good enough.

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Chronic Disease

Day 221 and Somnambulance

Around 1pm today I was overcome by a kind of drowsiness. I couldn’t seem to shake the feeling so I lay down. For the past 5 hours or so I’ve been in a not quite waking not quite sleeping state. I wasn’t dreaming but I couldn’t force wakefulness on myself either.

I had to crawl my way into just enough consciousness to call and text my therapist to let her know I wouldn’t make my session or group therapy. Had I not seen proof I left a message when I woke up I would not have been surprised to learn that I had been somnambulant texting. I barely recall managing the effort.

I had a medical procedure a few days ago so I am likely still recovering from the stress my body endured. But I’ve felt reasonably energetic. I was entirely unprepared to fall into a liminal state between consciousness and sleeping for most of my day. I could tell I wasn’t fully awake but I couldn’t quite tell if I was asleep.

I kept trying to force wakefulness upon myself only to find my mind falling further away from the effort. It felt like some horror movie effort where a character has been put under but is still aware of what is happening to them. I didn’t love it. But clearly I needed the sleep. I was just barely able to get myself up to take my evening medications. Certainly wasn’t what I was expecting out of my Monday but so it goes.

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Chronic Disease

Day 218 and Brain Fog

Being physically sick sucks. But having your mind take a turn for the worse can be worse. I’ve written about being in the grips of pain and the fear I have of exhaustion, but I don’t think I’ve written about what it feels like for one’s mind to struggle.

Whenever I read about recovering from covid and it’s challenges I can’t help but notice how often brain brain gets mentioned. The Lancet published a study of over 80,000 people that offers some concerning evidence that Covid has significant impacts on brain function.

“Finer grained analysis of performance across sub-tests supported the hypothesis that COVID-19 has a multi-domain impact on human cognition.”

If you don’t rely on your mind to make a living maybe the prospect of losing cognition isn’t as scary. Though I doubt it. I’d argue that the primary fear of losing one’s mind has much more to do with feeling one cannot communicate as effectively with one’s loved ones. We tend to get used to our cognitive capacity and finding it lacking can be quite terrifying.

I’m quite lucky that my own disease, ankylosing spondylitis, messes with my spine and not my mind. I’ve generally retained my sharp mind even if my body occasionally fails me. But I’ve still felt the frustration and confusion that comes with reaching for understanding and problem solving and coming up short.

Occasionally if my pain is bad enough my mind feels like it slows. It’s almost imperceptible but it’s still there. Like I am grasping for something that’s just an niche or two out of place on a shelf. You reach expecting it to be there and startle with confusion when it’s not. You adjust and get your grip and can carry on, but you are frustrated as you felt sure that the extra inch wasn’t supposed to be there.

Lucky for me this is fairly rare and easily solved with an NSAID. Once acute pain recedes my thinking is quick again. But what if it wasn’t? How would I learn to cope with that sense that my thinking wasn’t as clear as normal? Sure, maybe aging will do me in eventually, but I wouldn’t chose anything that could slow my mind.