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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.

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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.

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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.

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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.

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Chronic Disease Finance Internet Culture

Day 46 & Time Value

My day went entirely off the rails around 5pm. A doctor with a very particular specialty that my current general practitioner wants me to see didn’t have any availability until mid April. I took the first available appointment and said I will take literally any cancellation you have. Well they had a cancellation for tomorrow at 11:20am and it’s now been 18 minutes since their email was sent as I was, ironically, in another doctor’s appointment (my therapist).

Upon getting out of my appointment, my husband (who is on my healthcare email since being sick in America is basically a part time job) immediately tells me to check my email as he checks how far the drive to Denver will be and if he can drive me as I frantically check calendars. We email another commitment we had saying sorry we have to cancel for a crucial medical appointment. We discuss if this drive is feasible as he has a 10am. Decide that it will be fine. Approximately 23 minutes since the email was sent have elapsed. We email to say yes.

They email back thirty minutes later telling me that someone else took the appointment. I literally scream. I tell them to again let me know if any other cancellations I will take anything available I am a 35 minute drive away.

Meanwhile I get an email from some global consulting firm asking me if I would talk to them about direct to consumer cosmetics companies for $500 an hour. I initially say yes sure why not. And then I see their questions.

Can you discuss the following: Key drivers to expand digital outreach?

I scratch my head. I mean I guess. Key drivers to what? For what purpose. Digital outreach to whom to achieve what ends? This sounds like management consulting drivel. So I look at the next question.

Can you discuss the following: Strategies to effectively utilize online+offline channels?

At this point I lose it. Utilize what channels for what ends! I’m an entrepreneur for fuck’s sake. We either deal in complete pie in the sky or incredibly detailed absolutes. We do not faff about discussing utilizing channels for …strategies. I email the recruiter saying these questions are better suited to a management consultant and I can’t be helpful. Sure $500 is a lot for an hour of my time but an hour of my sanity?

Meanwhile one of my absolute favorite human beings, who is also an investor, has emailed me to ask for help with an opportunity a founder I introduced him to has on the table. I tell him my entire afternoon is available to run the numbers and I’ll pull out my previous actuals for a similar situation so we can figure out a way to help her score this win.

This is all an elaborate way of saying that the time value of your life doesn’t have an easy dollar value attached to it. If it’s your health? Literally will cancel everything to get to a doctor. So will your spouse. Your friends will understand if you prioritize the doctor. If it’s relationships that matter to you then you will go out of your way to help someone succeed. But $500 to bullshit someone? I guess I’d take a pass on that.

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Chronic Disease Chronicle

Day 17 and The Break

I’ve been putting my energy into other people for the past few days. Drawing on my reserves to help me and mine solve problems. Mostly emotional issues but all with a professional set of implications. Everyone has working solutions now which has given me the space to realize how tired I am. I see just how much work I put into others in the space of very little time. Quite frankly more than I should have because I have been feeling physically quite well so I thought I had more capacity. The closer I get to good health the more tempted I am to act like energy is an infinite resource.

This makes me feel bad as I often think I should be more generous with my time and energy. I remember being able to give more. I thought saying no made me unlikable. Now I realize boundaries are appreciated. They make us feel safe which lets us open up.

So I have tried to take today to rest. I put my routines on a bit of a pause. And frustratingly it only made me feel worse. The build up from the adrenaline spike wearing off. But it was a reminder that living life with highs and lows may sound fun but ultimately takes more out of you than being diligent about routines and rhythms.

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Chronicle

Time Rich But Energy Poor

I’ve got nothing but time. It’s been two years since I was diagnosed with an autoimmune disease that took my ability to walk and work. Thankfully only for a time. I’m on other side mostly which has afforded me a chance at introspection on the experience of living with all the time in the world but none of the energy to live it. When you are busy you have fantasies about time. The freedom it will afford you. What you will do with it. Canceling a plan is a delicious pleasure. You crave free time. Which is a misnomer really. Nothing about time is ever free. It’s the most expensive commodity we have. And you can’t really buy more.

So it’s an an odd sensation going from being busy to have total control over your time. It’s being wealthy in the truest sense. I’m a time billionaire. I have most of my life ahead of me and no real claims on my time. But when I was working on recovery I found that despite having no schedule or obligation I couldn’t make any use of my time. I was like the bibliophile Henry Bemis in Twilight Zone who is stranded in a library after a nuclear apocalypse but breaks his glasses before he can even crack a book. He had all the time in the world but no way to spend it. It’s a heartbreaking realization.

For the first time in my life I answered to no one. I spent my day in bed. But not because I wanted to. Because I couldn’t get myself out of bed. People would ask me well how do you spend your time? “If I were you I’d binge watch television or catch up on all the great works of literature.” I’d try to be polite about it but I was too tired to hold my head up on a pillow and follow a plot. My mind was too foggy and slow to take in insights. I lay in bed in a perpetual twilight. Barely cogent. Like Henry Bemis just as I thought I would have all the time in the world human frailty intervened. Without his glasses he couldn’t read. Without my health I couldn’t think. And like Henry my greatest pleasure was ripped away.

Unlike Henry Bemis I got better. We will never know if he found another pair of reading glasses in his bombed out world. I like to think he did. Maybe he wandered stumbling for miles and found an optometrist store with just the right prescription.

A new section I’ll add to each day with some media and consumables I found interesting.

Cosmetics: I’ve recently become diligent about applying vitamin C as a skin serum and my face has never looked better. I use this Superdose from Beauty Pie.

Media: New York Magazine is laundering the ZeroHedge conspiracy that the virus is escaped from a lab. So that’s fun to see come full circle to media legitimacy. Zero Hedge walked so NY Mag could run?

Food: I ate pulled pork from West End Tavern in Boulder.

Clothing: For my own amusement I wore a pair of pink sweatpants while taking my daily hike.