Tag: Chronic Disease

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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 302 and Lights Out

I’ve been a proponent of napping and mid day resting throughout the course of my recovery from chronic illness. Sometimes the only thing that stops inflammation is stopping your entire system. Rest and recovery is part of peak performance. But I was not expecting the sheer force of my desire for sleep to overcome me today. I was absolutely lights out.

I had a busy week with two major deadlines for portfolio companies along with a project for a friend who is a fellow investor. I’ve also been slowly restarting weight lifting again as I miss it as a hobby. Mix in a little frantic appointment frenzy and I’ve been busier than I’ve been since the before times. And by before times I mean before I crashed and burned with my ankylosing spondylitis not before times like before the pandemic.

Around 11am I went out for a hike to stretch my legs after my morning meetings. I only made it about halfway through when I realized I was tired. I came home and practically inhaled my lunch. I had planned to run errands and take calls but I could barely keep my eyes open. I got into bed at 12:45pm and I didn’t wake up again till around 4pm.

I’ve had this idea that wellness means I’ll never be tired again. I find myself incredibly indignant when I realize that healthy people get tired too. My fantasy that I’ll be able to work long hours and not pay any price for it remains a fantasy. Which makes me wonder if the rest of the world is exhausted all the time and I’m just unrealistic. Perhaps the norm is being on the brink of lights out all the time.

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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 Emotional Work

290 and Self Care

I’ve feel like I should have an entire category on the blog dedicated to “maintenance” as I’ve got loads of posts on my struggles to balance the activities of staying alive with well, the rest of my life.

All of the activities that go into keeping a human alive and functional are so damn time consuming. How does anyone ever get anything done when so much of life is dedicated to keeping our meat sacks from spiraling out? I’m pretty sure these are the things that actually make up life and I’m supposed to treasure this time in my body. But until I become as enlightened as the Buddha, I feel like this whole embodiment thing is just getting in the way of what I should be doing. My therapist likes to call this “human doing” instead of “human being” and I don’t love the joke.

I had a terrific day of doing things this Sunday. I woke up at 7am and didn’t finish all of the various routines and self care activities till 1pm. I went for an hour long walk (which is pleasurable since sunshine and mountain air but also low impact cardiovascular activity) I lifted weights (alright fine, I love squats). I meditated (mindfulness doesn’t count when you quantify it). I showered, shaved & washed my hair. I did the grocery shopping and meal planning for the week. I did three loads of laundry. I made lunch. I cleaned up. I juggled supplements (I’ve got a spreadsheet to track them all with 8am, 10am & 11am slots) which are completely separate from my medications (I have 7am and noon spots for those). And only then at 1pm did I finally get a chance to settle into work. There was so much work just to get to work.

And while I know all of those things that keep me balanced and healthy are the stuff of life, I also resent their necessity. I have elaborate fantasies about what other people get done with their time. Other people don’t need to exercise, meditate, take vitamins, or watch their nutrition right? Well alright I said it was a fantasy. If you also spent your Sunday doing chores and self care it would make me feel better to know that.

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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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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.

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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.