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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 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.

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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.

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Chronic Disease Chronicle

Day 56 and the Indignities of Physical Existance

I was raised in a “walk it off” family where my father got walking pneumonia like clockwork once a year. Working through it was just what tough Scandinavians braving the world did. We are tough people that can ride out the indignities of physical existence.

I find myself saddled with that self limiting belief to this day. Even as I recognize the importance of restorative rest for building physical and emotional gains. It’s hard to let go of the addictive tendency to prioritize pushing the work when you should be recuperating.

I’ve been trying out an an antibiotic that just doesn’t agree with my stomach. I found myself with a mess on my hands and the kind of emotional exhaustion that only comes from physical embarrassment. I soiled myself and I just wanted to shower and take a nap. But I had calls so I pushed through as I was excited to hear a pitch from a founder. Afterwards I was a mess. I had dug into my energy reserves and was starring down a migraine and a panic attack. Wisely I got myself in bed and took a few hours to get back to a baseline. Called my doctor and asked if there was a different option which there was.

I’m jealous of people for whom daily life isn’t a constant balancing act of scheduled obligations and exciting opportunities butting up against the reality that bodies are unreliable and even fragile. I’d give anything not to constantly have the back of my mind taken to with supplements, medications, treatments, tallies of how long I’ve got before I need a break. To be free of the many bodily concerns that have come to define my existence. Oh how I envy those that never worry about what new thing their frailty will bring them today.

The feelings passed and I was able to go for a long hike in the snow in the afternoon. But the fear of never knowing when my body will go from reliable to requiring help is a burden I’d like to give up. I’m hard at work trying to make it a reality.

Categories
Chronicle

Day 52 and Circadian Rhythm

I have come to appreciate routines and rhythms. They have a place in anchoring our lives. I didn’t always feel this way. As a twenty-something I enjoyed novelty and varied schedules. As I’ve aged the wisdom of setting your body to nature’s clock has become my preference.

One crucial routine for me is walking or hiking for an hour a day. Getting outside in full view of the sun turns out to be crucial to my health and well being. It helps my sleep and keeps my energy steady. It’s a routine I didn’t keep when living in Manhattan as there was little nature to enjoy and even less sunlight. While I walked everywhere that was a transit decision more than an anchoring rhythm.

But the past two weeks have been completely shot routine wise for me as the polar vortex brought temperatures well below zero and then a series of snowstorms piled up the powder. Usually in Colorado the sun will melt off light snowfall within hours and the temperatures will climb into a pleasant place where you can be outside without layering up. Instead we’ve been Arctic cold with snow that is sticking around past it’s fluffy white powder phase.

The biggest impact has been on my sleep. Typically I am in bed by 9pm and try to stay off my phone. I’ll read and drift off to sleep. Without the sunlight resetting my circadian rhythms I’m letting the blue light of my phone tempt me into staying up “just a little bit later” till I find it’s past midnight. It’s not even doomscrolling. It’s just not winding down when my body normally does. Rather than falling asleep naturally I’m struggling to come down. So I talk myself into just reading one more article and then I’m sure I’ll be tired. Then another. And another. And well you get the picture.

This is beyond the help of hot tea and magnesium. Only sunlight and movement in the morning is going to reset me back. Thankfully it seems the Arctic air has passed. I’m tempted to take a double Ambien and force myself to sleep so I can restart the process in the morning with a good night sleep and a wander in the foothills. So on that note I’ll leave you to a good night as well.

Categories
Chronicle Preparedness

Day 49 and Waste

I’ve been using WordPress as a content management system for fifteen years or so. It’s had a penchant for losing drafts all of that time. Journalists complain about it constantly. You tend to retain that information in your lizard brain after losing a few pieces and get in the habit of saving things into other systems when it starts to get janky. Call it muscle memory.

However, as I learned tonight, if you don’t have a longtime blogging habit you don’t have this habit. I spent the last forty five minutes writing about my memories of Hurricane Sandy and how the crisis in Texas is bringing back memories of the storm that brought about my preparedness interest.

Sadly an expired SSL cert meant I couldn’t publish the draft. I asked Alex to help fix it as he’s got a knack for fixing glitches quickly. I warned him that the post was only saved locally and he should copy it to the phone clipboard and paste a backup into Gmail. He apparently has never lost a draft into the hungry maw of WordPress so “saved locally” was good enough.

After deleting and reinstalling the certificate well I bet you can guess what happened. The writing is lost to the ages. Alex didn’t have the muscle memory to save it to other program. But like hell am I losing my streak of writing every day. So here I am writing about the the annoyance of spending time crafting something only to have it disappear into the ether. A new post will be sent into the world.

I’m somewhat comforted knowing that the post didn’t seem very good to me. Which probably means it was excellent. But alas some eldritch horror has spirited it away into the black hole where lost socks and blogposts live.

I also kid you not I got a text warning me a negative energy had wandered into my room and I should open the door. I guess the world knew I was pissed I lost my post. So I’m going to go burn some sage. Because I live in Boulder and honestly I don’t want the bad juju of anger on me before I sleep. the key to happiness is never going to bed angry. Or so I hear.

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Chronic Disease Chronicle

Day 47 and Unraveling

The saga of the specialty doctor continued this morning. To recap quickly my doctor wants me to see a specialist for an urgent medication but the clinic didn’t have any appointments till mid April. So I said I’d take any cancellations. Apparently this guy is in such demand a 23 minute lag time has me missing out on a canceled appointment. So carrying on, I got a call at 8am from a Denver number. “This is the clinic we have a cancellation at 11am can you make it in?” This time I’m smart enough to say yes immediately. I hadn’t rebooked my calendar so I was available.

I spent the morning organizing supplement and pharmacy charts, brought in my biomarkers and a list of tests. I worked myself into a small frenzy coordinating with my doctor on what information and part of my medical history needed to be brought up in the short appointment as my case is complex. No need to bring up unnecessary or extraneous detours. I could feel myself unraveling. I took an Ativan after throwing a pile of books off a chair in a fit of frustration to get a better angle at the laptop. It was at that point I realized I might have some medical trauma spooling out.

I say this not to insinuate I have unchecked anxiety or am concerned about my mental health but to say that even the most stoic can quickly find themselves unraveling in the Kafka logic of our medical industrial complex. The people tasked with healing us are burdened by a system that is poorly suited to anything that can’t be solved with acute care. Break a bone or need emergency care and you can’t go wrong with western medicine. Add any additional complexity to their already onerous system and you may wish you had a broken bone instead. Finding a way to through the maze requires willpower and focus just when you are at your weakest.

Add in a dose of chronic care and health quickly becomes a discussion of just how much better to you expect your life to be. Maybe this is as good as it gets. You ask yourself why do I bring trauma into my life? Why bring on the stress of yet another specialist when it may get you just another dead end. Even with a good diagnosis, and an excellent doctor pain, exhaustion, and other “irritating” but but not life threatening symptoms get to be things you start to accept. You live with debilitating issues because getting good care can sometimes be worse for your health than living with it.

Except I’m not good at taking no for an answer. I don’t stop just because a hurdle or even a panic attack gets thrown in my way. I keep plugging away. I’m what you might call resilient. Still I know medical systems have become places I associate with trauma. But I keep at it.

This is how I’ve become someone that swipes my credit card for $900 in supplements and no longer turns my nose up at esoteric and unproven treatments like cold therapy or electromagnetic pulses. I want to be 90% better not just “can get out of bed” better. I can work 5-6 hours a day now. I want to get back to 10-12. Even though I know my half day is more productive than most people’s whole days. Because I just don’t accept that what I’ve got is good enough. Even when the search for health unravels me. Because progress is something that you work at every day. Even with the setbacks. Especially because of the setbacks.

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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.

Categories
Politics

Day 41 and January 6th

Thirty five days ago feels like a long time. I was only on the sixth day of my daily writing experiment. I was entirely unprepared to have to live through a traumatic national moment let alone speak to it.

Obviously none of this is incisive political commentary. It’s barely coherent. It’s the emotional rambling of a woman who was born into a stable functioning democracy who believed it would be there for her entire life. Our system of government was a given for me. I believed in the American dream.

But as we get further from the moment and I become used to regular writing I see that some core of the moment did get rendered for posterity. I was born into a stable functioning democracy.

Watching the impeachment proceedings has done nothing to make me more confident our democracy will remain stable or functional. The Republicans appear to be in a state of either venial denialism or opportunistic fascism. I don’t know which one I think I worse. And the Democrats are somehow still operating under the delusion that the right gives a shit about rules and parliamentary niceties.

I’ve got some doomer predictions about how this plays out about which I sorely hope I’m wrong. How horrible to be the generation that allows the great American experiment to fail. How embarrassing to get it wrong just as much of the rest of the world is finally getting it right. American exceptionalism on its ass.

I’m not entirely sure that what comes next is bad so much as just “is” what will come. History isn’t reversible. And we are in for a wild ride of institutional chaos as we adapt to new norms. I believe there is a way to ride on top of chaos even succeed because of it. I even think it is possible to thrive as it forces us to solve for more problems more quickly. At least for some of us.