Tag: Illness

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Chronic Disease Emotional Work

Day 330 and Vitamin Not Pill

I was reading a fellow investor’s thesis page and noticed one lens they use for investing is whether a product is a “vitamin or a pill” with the insinuation that pills are inherently better investments than vitamins, as one is a nice to have for a business and the other is a must have. Now I can’t speak to this as an investment thesis, though I largely agree, but I do disagree on a wellness basis.

Preventative medicine is just as necessary as interventional medicine. In some cases more so, as getting ahead of a disease’s inflection point should be the humane way we handle our medical needs. We are just often too focused on short term impacts to see the value of solutions that build over time. Think of it as the quarterly reports of healthcare. Why build for the future when the market judges by each 10K?

The nature of panic may make us inclined to spend heavily on something that has become acute. But that does not make it inherently more effective or worthwhile. It’s just the immediately necessary. It just means we need higher minimum effective doses to see a result.

What we often ignore is compounding effects of wellness interventions are far superior to the mitigation of a pharmaceutical over time. Most of us would prefer to not require the costly (both biologically and financially) medicines that keep us together. This is not to say that I am not deeply grateful for all the drugs I take. But rather that I have seen incredible value in what we deem “lifestyle interventions” and other “nice to have” vitamin style supplements and protocols.

And while it takes much longer to see their effects, the compounding positive effects often wildly outperform anything that might be dubbed a pill. The trouble probably boils down to switching costs and time to pay off. Which is why an investor would prefer a pill to a vitamin. But just because something has a longer lifecycle doesn’t make it inherently less sticky. Or less effective. Or crucially any less profitable. The only way we ever see the deeply positive effects of habitual practice and dedication is to do the work. That work is boring, repetitive and low payoff. Until, most times years in the making, you see how putting your future self over your present self is what is giving you the future you always dreamed would be yours.

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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.

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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

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.

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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.

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.

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Emotional Work

Day 262 and Patience

I am in a transitional moment in life. I’ve spent the last two years climbing to my own personal mountaintop and studying at the feet of my own body’s masters. Being a student of myself and my limitations has been illuminating.

The montage scene of growing and becoming stronger in the monastery turns out to take a lot longer in real time than it does in the movies. Probably why they only show you the super cut. I did get to do most of it in isolation though so I guess that’s suitably cinematic. Most people probably imagine vows of silence not Tweeting alone from your bedroom during a pandemic but the effect is basically the same.

I can sense that I’m coming to the other side of some things. That my time becoming myself on the proverbial mountaintop is almost over. It is time to come down from my personal monastery and rejoin humanity with my learnings. I am an expanded soul from the experience of this hardship. But I’m also not quite finished with my journey back yet either.

Maybe in this metaphor I’m looking down on the city I am meant to rejoin. Or maybe I’m in a camp on my way down. Either way I feel eager to get back to the business of living in civilization. But I’m not there yet. Something is whispering patience to me. But I’m so close. I’m like an animal that knows it’s close to home and speeds up their pace. I’m anxious for the journey to conclude. But I’m not quite there yet. If you are waiting for me I’ll be there soon. What’s a couple more weeks after a couple of years after all?

Categories
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.

Categories
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.