Categories
Chronic Disease

Day 88 and The Insistence of Pain

It’s only with hindsight that I realize pain has been a persistent companion in my life. If something is normal for you the grandiosity of ego can tend to make you assume its true for everyone else. I spent much of my life thinking it was normal to be in pain, to be tired, to feel unwell. Life is suffering right? As it turns out no most people are not suffering from debilitating pain. I was not normal.

I’ve been feeling well recently and when I have extended stretches of health the memories of pain fade. This is good as pain is an insistent companion. They tell you to ignore your pain or place it on a shelf or some other “removed” metaphor but I’ve always found this to be bad advice. You can channel all your focus elsewhere but the pain is there. And worse, now you are using all your energy to pull your attention away instead of what you may have preferred like work or a hobby. It’s a consuming experience one way or the other. You can feel the pain or you can feel the force of your willpower but regardless you will feel. Pain is demanding.

When pain is chronic you think you will get used to it. That perhaps it becomes a background noise after a time. The way you get used to a television or radio playing in another room. But it’s not really like that. My pain is in my spine. It comes from a swelling that chokes out the nerves. The worst spots for me are between where my bra strap would land and my mid back. At its worst it runs the length of my spine and impacts my ability to walk. There is no comfort to be found with this pain. Sitting up. Standing. Even laying down. It finds your attention. It does not give reprieves.

Ben Hunt at Epsilon Theory wrote about the two types of pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. I suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

I live with a lot of pain beyond understanding. When it grabs me there is little I can do but hope to survive. It consumes. You have tools to fight but more often the only reaction that makes sense is fighting to relieve it. As Ben said, it has nothing to give me. It teaches nothing in this state. It’s beyond sensory inputs. This pain envelopes you into another reality. And when it is relieved you pray it will never reappear again. I know that it will. But the fear of it makes me bargain with myself. I say I will redouble my efforts to fight for my health. As if I weren’t doing as much as I can. I remind myself I have pain medication for a reason and I should simply take it. Sometimes I do.

Pain doesn’t care. It isn’t an enemy. It simply exists and you pray the tools you have will relieve it. When a true 10 on the acute breakthrough pain comes all you can do is hope to survive it. And when it is relieved the sweetness of its passing is like no other pleasure. It’s like having your humanity restored.

Categories
Chronic Disease Chronicle

Day 81 and Good Patients

I don’t know why I feel compelled to act on a doctor’s opinion (literally every doctor) when I can think critically about any other form of authority. I’ve got some kind of deep seated fear of disobeying a physician’s suggestions in a way I just don’t with others traditional authority figures and I wish I could break it. American doctors love to prescribe drugs for every random symptom or blood result. And I’m fearful to say no. Even though I know I can’t be on about half of what I’m given

Absolutely had a anxiety moment this morning as I’m due for a metabolic blood work up and I am not sure I have the energy for the shaming if I “fail” that my endocrinologist will throw at me. I’m a healthy weight but I was overweight earlier this year and I leave in fear of that fat shaming coming back. At this point I just let her prescribe the drugs and don’t take it all. I’m sure I’m in for a lecture about some thing.

Categories
Chronic Disease Chronicle

Day 76 and Lost Time

I didn’t used to keep much of a routine. Startup life and Manhattan nightlife made for a lot of variability in my days. But the trick of losing your body to sickness means that you don’t need the novelty of nightclubs or the emotional highs of startup life.

My body now provides all kinds of surprises all on its own. I can feel terrific one day and the next for no apparent reason I’m practically immobile from pain. The frequency has gone down significantly this year thanks to modern medicine and a lot of biohacking but let’s just say I’m grateful I work on the internet so no one cares if I’m flat on my back typing in bed.

But one things I’ve found to be extremely helpful in managing the foibles of an unreliable body is a deliberate routine. I honestly wish I had learned the value of routine earlier in life. Maybe I’d be healthy now if I had shown the same dedication to supplements, exercise, meditation and sleep. Objectively that’s probably unlikely as some stuff is just chance and generics but man when you find something that works you want to retcon your whole life.

But there is a downside to routine. You cannot get sucked into work manias because you have to stop to meditate or take a supplement or get in a workout. Routines keep you from meandering as you can fill a whole day with good behavior. But life sometimes needs more randomness than a strict day of check lists. Today I felt like an entire disappeared to my routine and while physically I feel well I’m not entirely sure I got anything done despite having taking all my pills on time. I lost time between all the good things I was going to keep stable. Sometimes I worry that all this effort will keep me from the creativity and serendipity of a life lived without good habits. But then I might end up sick and back in bed so I hope it’s a fair trade. But I still worry I’d rather lose time to work binges or nights out.

Categories
Chronic Disease Chronicle

Day 71 and Caprice

I felt just terrific this morning. Woke up and had nary a dip all day as I went from work to chore with energy to spare. I often live in a bit of fear of the “bad” days when despite rest, nutrition, medications and supplements I feel like shit. It’s completely unpredictable which makes me feel like I live at the whim of a capricious god. Good days can feel equally bolt from the blue. I feel like I’m dying one day and the next I am hale and hearty.

Living life without much control is something all humans should probably make peace with, but I’m finding it especially crucial as I learn to live with a recovery from my health imploding two years ago. The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain. So while I can see that overall trend line is improvement I still get psyched out when the line takes a dip on a bad day. I am equally anxious about the good days as I seek to maximize every minute of feeling well by packing those days with to- dos. I always fear that the good day will never come again. And on the bad days I fear it will never pass. The one thing I can never seem to keep is that the data points themselves don’t matter it’s only the aggregate. And the aggregate says I’m getting better. But oh how the capricious health gods get me with their tricks every single time.

Categories
Chronic Disease Chronicle

Day 68 and Two Steps Back

Last week was a bit of a disaster for me. I had a change in my medications regimen that triggered daily migraines, I got over my skis on a bunch of work projects and someone close to me is very ill. My doctor asked me to please reduce my workload as I’m still not stabilized to their satisfaction.

I’m pretty angry about it as I’ve been working hard on ridding myself of as many symptoms of chronic disease as possible. The possibility that I can be fully functional and healthy feels within reach. But it turns out I’ve got a few more months to go before I’m cleared to return to a full time load. Obviously the fact that I’m a workaholic addicted to having a large workload complicates things as well.

I actually feel quite well now as I’ve had a couple days of rest but I got pretty indignant that I couldn’t just push through especially as I have a pet project now in Illegal.Auction that I would like to promote. But instead I’m shitposting on Twitter and making viral tweets about monarchy and chaos magic. And watching a lot of television. Which is actually a sign of progress if you can believe it. Typically I struggle to intake information in any other form but written. So as they say two steps forward and one step back.

Categories
Chronic Disease Chronicle

Day 66 and Moralizing Health

I’m sure there is a perfectly reasonable evolutionary explanation why humans developed a bias correlating health with moral righteousness. Jesus and lepers aside, teaching the herd that you needed to stay away from infectious individuals is what formed the “winning” population is probably a lesson some reply guy will shove down my face. Like I get it, fucking and producing offspring is what makes you Darwin fit.

It’s just a deeply stupid thing to continue when we have the scientific method at our disposal and can actually test for what causes disease. This isn’t to say that lots of behaviors we moralize around strongly can’t correlate to poor outcomes (smoking, alcohol, food) but depending on the person you’ve got countless other variables. Population level statistics are crucial for actually gaining certainty on a hypothesis and what happens “most of the time” but there are always edge cases. We shouldn’t let edge cases dissuade us from good policy that will benefit most of us. But we should always leave wiggle room and exceptions for the outliers.

I don’t even mean this grandiosely, more like if you are a heroin addict switching that to cigarettes is a better addiction substitute. Maybe you get lung cancer or heart disease but that’s still on balance the better outcome when faced with overdose. For me weed is a better drug comparatively than opioids for chronic pain. Would I be thrilled to require no drugs ever? Maybe! Or maybe that is just centuries of stories moralizing the clarity and goodness of our leaders who never once required aid or comfort on their journeys to power. Lol, sure humans love to retcon the stories of our historical victors. The only hero who didn’t try to write out the sinning part was Jesus Christ and we sure hate to be reminded of the failings of his friends and family. Mary Magdalene was such a slut amirite?

So next time someone shits on you for doing something that is unhealthy for the general population but healthy for you, I give you my full permission to tell them to shove it if they are being an asshole. Don’t like dunk people for sharing their joy at making decisions that improve their lives. But don’t expect that it has to be done to everyone’s lives.

Categories
Chronic Disease Chronicle Startups

Day 64 and Addiction

I’ve been working through unconscious mindset issues and self limiting belief systems as an active exercise the past few months.

I’ve been really hung up on the value of pain and discomfort. Somewhere along the line I became convinced that working hard is morally good. And over time that developed into an addiction to work. I got off on being seen as someone who never quits.

This workaholism eventually had the consequences of forcing me into quitting everything in order to survive my addiction. I didn’t have a choice at a certain point as it was stop being a workaholic or quite literally die. My health failed me so I could have a second chance. I’m still grateful that I chose life but not a day goes by where I don’t wonder if it was the wrong choice. What is living if I’m not killing myself?

Realizing that rock bottom was a choice was a bit of a shock to me. I always thought it was an external forcing mechanism that finally freed you from your addiction. I had a very Augustinian “make me good but oh not just yet” understanding of my addiction.

And because my addiction is considered virtuous I’ve had a lot harder time seeing the value of letting it go. We look down on drinking, drugs and other sins. Work isn’t on the list of seven deadly sins. Sure I get pleasure from working but I can’t separate it entirely from the external validation I got from being “good” especially from people I perceived as my betters. And because I had a challenging relationship with my father as a child (he is also a workaholic) this put me in a precarious position when dealing with older white men. In other words, anyone who will ever finance me or mentor me, as technology and finance has an extreme demographic skew. I was constantly in a place where I wanted validation from these elders to soothe my inner child. I would do anything to show them I was good and worthy. I’m sure there is a Biblical or Greek tragedy angle to a child so deeply committed to being sacrificed for their father.

All this was compounded by the feeling I got when people who were my peers put me on a pedestal. They wanted me to be a martyr as much as I wanted it. And some of them will likely never forgive me for not being their own personal Jesus.

This all leaves me with very mixed feelings as I know I hit my rock bottom and it’s time to leave behind my addiction. And it’s very much time to rid myself of enablers who pleasured and profited off my disease. But it’s so much a work in progress. I feel the desire to jump back in to work and say yes to everyone who wants my work. I love it and they want it. But I need to find a way to only ever commit to those who want me to be well and thriving.

Too many people profit off of the deep desire workaholics have to always be producing. Capital and eager teammates can easily see a workaholic as a better bet for making money. I’m sure most don’t realize it is predatory because they assume we can stop. The sad truth is I’m not sure I would have stopped. I just got lucky I became too sick to carry on. So this is me committing to only working with those who want me on their team if I’m healthy and “sober” because I’m not going back on the “bottle” ever again. I just hope it means my work will be better for it. I think it will but it’s one day at a time.

Categories
Chronic Disease Chronicle

Day 63 and Directionally Correct

I default to action over inaction. Don’t know if something will work? Try it!

I’ve never struggled with paralysis by analysis. I intake a lot of information and then even if I’m not sure I’m entirely correct I’ll still jump if I’m confident I’m directionally correct. This had proved to be a good recipe for startup work and financial gain. But I’m learning this methodology is fairly shitty for health.

Medicine needs a little more patience and a lot more precision. Data points accumulate and you can only effectively progress if you can isolate what is causing distress. I fucking hate this. I want to throw a thousand drugs and supplements and protocols at my body and just move “directionally” towards health. Portfolio theory doesn’t really work on autoimmune diseases as it turns out.

Thanks to an incredible functional health doctor I have been making fast strides in my quest to control my autoimmune disease. My pain has been under control, my spinal swelling is down, my energy is up and my focus is clear. So I was particularly frustrated last week when adding a new drug to my regimen wasn’t clearly “correct” and I had no way to tell if it was directionally correct. I just have to wait it out.

I had terrible migraines. My pain spiked. My sleep suffered. And all I wanted to do was throw more drugs and supplements at the symptoms so I could get back to life. I have been doing more investing, advising more companies, and taking on more personal projects. I didn’t want to lose that. I love working.

But unlike with startup life I can’t just muscle through it and see if my bet will pay off. We have to be careful. Systemic cascades are bad in biology. Think cytokine storms and covid19 cases. I could easily undue all this progress in my pursuit of action over inaction. We need to be more certain that my body can handle this new drug regimen and winging it isn’t an option.

So I’m stuck being patient (pun not intended). I can’t push it. Directionally correct isn’t good enough. And that means slowing down so I can go fast later. In some areas you need higher degrees of certainty.

Categories
Chronic Disease Chronicle

Day 60 and Never Saving Anything For The Swim Back

I’m feeling scrambled today as I’m not quite in a place where I can push myself without consequences but I’m also not so sick that I can’t work at all. It’s an awful liminal state where I’m working what is probably the actual productive output of an average person but still need to buffer in time for medical shit.

I honestly contemplate just lying about being sick some days. I could hide the disability of chronic illness and no one would be any wiser. Well minus the public posts about being sick but you get my meaning. I’d probably have to get a little bit better at scheduling work during consistent productive hours, push through when I feel like shit, and then crash when I wasn’t on the clock. I’d be seen as a little unreliable but definitely enough that I could manage as a director at some company.

I’m not sure if this says something bad about me or about the expectations of the American workplace. Probably a little of both. I’m clearly a bit of an outlier and we don’t actually expect that much output from the average worker. When I’m operating at my full capacity I blow away workloads. I sometimes doubt if I’ve ever been at full capacity and I’ve been faking it my entire life. I’ve never been completely hale and hearty. I’ve always had a tendency to put on a show when I’m in public and then retreat into recovery when in private. I’ve been a very boom and bust person.

I don’t really want to live this way though. I’d rather run a marathon than be a sprinter that is collapsing after each race. I recognize that in some way this pattern of intense work and recovery isn’t sustainable. It’s also clearly an addictive pattern. But I’m too scared to admit that I don’t really know what a consistent healthy working life looks like. I’ve been an addictive compulsive worker my whole life because I never trust that I can rely on my good hours to be consistent. I gulp at each hour of feeling well like I’ll never get them again. The fear that this is my last shot at feeling well is palpable.

One of the most formative pieces of art in my narrative self is the movie Gattaca. In a dystopian future, children have their genes edited before they are born. The protagonist of the film “Vincent” played Ethan Hawke is an “old fashioned” human conceived without any edits. He has a heart condition and other frailties. His brother Anton was given edits. Despite being an “in-valid” Ethan Hawke is able to find his way in to a space program using contraband genetics. His brother is furious and cannot figure out how his disabled brother is able to beat him. This fraternal tension plays out in two swimming competitions. The invalid brother Vincent bests his genetically superior brother Anton. Twice. How did he do any of this!?!

“You wanna know how I did it? This is how I did it, Anton; I never saved anything for the swim back!”

I really internalized this logic as a teenager. There is no gene for the human soul. Winning is not about being superior it’s about giving it your all. I bought this. So I never saved anything for the swim back. Except that maybe this is a shitty strategy for anything but races. That if you need more than to win a swimming match you can’t go all out every single day. That this is actually a strategy that will kill you.

Of course, I am petrified that this isn’t true and I should be swimming like Vincent every day. That he was right that greatness is forged in extreme effort. That I should give my all till I collapse. But then what?

I’m stuck in a behavioral pattern of self limiting fear that I must always be striving or I will literally be dead. It’s live at the edge till I win. But win what? Sometimes you fail. That’s how you learn. Failure is a crucial part of success. But if I am always swimming to failure I’ll never recover enough to learn from my failures. I’ll literally be dead in the water. So I’m stuck in this place of fear where I know I can’t always give my all but I don’t really yet believe that there is any other way to succeed.

Categories
Chronic Disease Chronicle

Day 58 & The Line Between Progress and Woo

While I spent my childhood deep in the western canon, now I spend my leisure hours reading science fiction. I’m just gaga for space operas, singularity stories, transhumanist breakthroughs and anything else you might put in a paperback to showcase “the future” right around the corner.

I’m what you might call an old fashioned technical progressive. Everything the future brings has a bright side. It’s probably the counter cultural hippie heritage I have. A better life is just around the corner.

Add in the additional nuance of having a chronic autoimmune condition and you can see how the line between science fiction and woo is a little blurry for me. One day a supplement is part of your favorite biohacking routine and the next it’s in the business papers making news as the latest breakthrough for life extension. That’s a real drug by the way. It’s called metformin and I take it every day.

I play around with a lot of weird “science-not-yet” stuff like a pulsed electromagnetic field to produce an analgesic effect in my spine. And I get made fun of pretty regularly by scientific method folks who scoff at basic studies that haven’t fully satisfied their curiosity.

But I honestly don’t care. I want to feel well. I want to thrive. Why wouldn’t I be trying out the latest treatments, supplements and pharmaceuticals? Why wouldn’t I experiment on myself. I don’t want to wait for everything to be double blind studied to death in twenty years. Will it kill me? No. Great let’s go.

We’ve given up on the joy of progress in my generation. We’ve let our imagination sour on the birth right of scientific advancement for the human race. It’s sad we’ve become so cynical. And sure, I often critique predatory health care that sell shame cures to the worried well. But are we confident we understand the line? I’m not. That electromagnetic device I thought was woo? My fancy upper east side New York rheumatologist used to have one in his office but found patients would rather take a drug than spend an hour on a machine even if the efficacy was the same.

Why is it so impossible that I might cure my spinal pain and reset my immune system? Is that crazier than landing Perseverance on Mars? I don’t think so. Sure I don’t like hucksters or charlatans either. And I still think places like Goop prey on desperation. But do I want to believe? Yes! Because progress happens. And it is making our lives better. We can expand our lives. Live better ones. It’s not a hopeless spiral to the destruction of the planet and our species. But if you want to come along for the ride you might have to tolerate me doing some weird shit. Till we prove it of course.