Category: Chronic Disease

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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 40 and Forgetting

When I first committed to writing “something” every single day I didn’t have a lot on my schedule. I was busy with routines for my recovery (I’ve been busting my ass to overcome an autoimmune issue that presents in my spine) but most of those obligations didn’t require coordination with anyone but myself and my doctors. It can be a full time job between medicines, supplements, treatments, testing, and insurance. But it wasn’t hard for me to find time to write something. Hasn’t always been polished but I’ve always got “something” out the door.

Today is the first day since that commitment to write pushed up against a building set of obligations to other people and projects. My medical stuff felt easy and part of a natural routine. And I didn’t take any downtown for recovery between obligations. I used to buffer my obligations with naps or even whole days of rest. Increasingly I have the capacity to do big blocks without any breaks. Which is how I find myself at 9pm without having set out a quiet block to write my thoughts.

I cannot tell you how exciting it is to have a productive day of work and healthy habits and find myself thinking well huh 15 hours have gone by since I woke up and yet I found no time to write? I look back and see no there really wasn’t an hour or two where I was in bed on my phone. That’s a first for me in quite sometime. I don’t feel exhausted or depleted. I feel if anything pleasantly energetic. Like I need to begin my bedtime routine to let myself come down. And I cannot wait to pick back up what I didn’t accomplish today first thing in the morning.

My human capacity to forget is kicking in. I’m forgetting what it was like to be unable to walk. I’m forgetting what it was like to be in so much pain I couldn’t think clearly. I’m forgetting the soul crushing exhaustion that took all but the most basic activities from me. I wouldn’t mind forgetting the bad parts to be honest. If I could just remember the emotional depths and new strengths I discovered I’d be pleased. I’m sure I’ll have a flare soon and become newly intimate with the ways pain overtakes all life. But I enjoyed forgetting it today. And maybe if I’m lucky I’ll have more time to keep forgetting.

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Chronic Disease Chronicle Politics

Day 36 and Responsibility For Yourself

As a libertarian, personal responsibility is a foundational philosophy. Owning your decisions and their impacts on others is crucial for freedom. It’s also an impossible standard at which we fail daily.

Humans are selfish and fallible creatures, prone to rationalization and justification. We tell ourselves stories about our innate goodness in order to shield ourselves from the pain of our sins. We believe our own lies first.

This has been particularly apparent to me, once again, during the pandemic, as I’ve watched family members make choices over and over again that show how much they need me to forgive their sins. As if I was their own personal Jesus and not their daughter or sister. Ready to tell them that leisure travel is fine because well they are probably being safe and oh sure winter is just so hard. Mental health is just such a struggle isn’t it?

I’m no messiah. I am not here to take your sins and wash them away. I’m just as much a sinner as you. And I’m certainly not the best person to ask forgiveness of when it comes to the health of others. I’m the personification of how your decisions actually affect real people.

You know our little stories about how “the sick and elderly should stay home and keep themselves safe because…list of rational reasons.” We’ve turned it into an entire political stance. We’ve built it into a moral edifice. When it’s just a lie we need to feel better about our sins to survive.

And so I stay at home. I don’t interact with other people. I see my husband and my doctors. Because I know I’m responsible for my own life and my own health and nobody else will be. I’m not asking others to be responsible for me that haven’t actively chosen this as their life path (with thanks to my husband and mother who did).

But I am asking my other family members be emotionally truthful with me. I’m asking them to admit to themselves and to me that their pleasures are more important to them my quality of life. That by taking a trip to a far away beach that they perceive as safe for them, they add to the aggregate set of decisions on a collective level that forces me to stay at home. That those decisions will keep me at home alone cut off from normal activities for longer. Basic life.

If you engage in those choices, admit the truth to yourself. And admit it to me. That your enjoyment of life is more important than me living mine safely. To not do so is to lie to yourself and to me. I can accept your choice. I cannot accept your lie.

I’m shouldering the sum total of all the bad decisions and little sins of everyone else who either can’t or won’t take responsibility for the impact that their own choices add up to at the societal level. It makes me angry, I’m a libertarian not an ubermenschen. I don’t want to carry responsibility for everyone else. If I was I’d probably have different politics. I’m only responsible for myself. So stop asking me to accept responsibility for yours.

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Chronic Disease Chronicle

Day 35 and Workflows

For someone that thrives in chaos I hate change. Once I have a workflow for an application or device I dig in hard. Part of this is because I have shockingly poor user experience intuition. It takes me longer than average to learn to use even the most simple applications. But part of it is how I learn. I dive in deep to master a new skill and then jealousy horde the knowledge out of fear that someone will change a design or form factor to the point where my muscle memory cannot be relied upon. That would mean a complete reset of my capabilities requiring a day of learning. That’s mental overhead and the stress of doing my work poorly while I learn. I bring this all up being I got a new phone.

My old one was getting sluggish and my husband loves buying gadgets so a new one appeared after I had merely whispered that my old device may not be long for this world. The new one is sleek and fast and lovely but it’s significantly bigger than its predecessor.

And even an inch requires me to completely relearn muscle memory for how to hold the phone, how fast I can type, and where the apps do or do not bleed out the edge. I kid you not when I say two days into using it I’ve already developed a callus on my pinky from holding it up vertically while thumb typing. I hope my pinky hardens over fast as damn this phone is heavy.

This frustrates me as I spend my day on my phone and have a significant amount of my workflow baked into mobile apps (I’m writing this in WordPress’s excellent iOS mobile app) as my spine gives me trouble if I spend all day in even the nicest office chair. So I type a lot while lying down with the phone over my face. You can see how I might get a pressure callus from this nonsense now as the grip I’ve developed relies heavily on the right pinky to hold up the device. This worked well on a lighter shorter device. Not so much here.

I know I’ll adjust in a few days but the minor irritation that comes from having a workflow be disrupted has its cascade effects. It does just enough to knock you off kilter that it can sour a mood or inhibit creativity. I’m sure there are lessons in here for how app onboarding and product sales can be managed to ease stress or buy in for consumers. But for me it’s probably just a minor callus and an extra Ativan. And a bit of writers block as I get frustrated with just how uncomfortable my hands feel with something new.

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Chronic Disease Chronicle

Day 34 and Absence of Evidence

I’ve been rising through a noticeable uptick in energy and functionality. If I compare myself to where I was over the summer it’s practically night and day. I credit a small portion of this to moving back to my home state of Colorado. But it’s largely due to turning over my healthcare to some fairly unorthodox health practitioners.

I felt like I wasn’t making any more progress with my traditional doctors. I suffer from an autoimmune condition which is treated by a rheumatologist in New York. He’s world class and took me in as a patient when I could barely walk a few steps without a cane. Thanks to steroids, chemo drugs, and biologic injections I have back basic functionality but I wasn’t living a life free of pain nor did I have the energy to be out of bed more than a few hours a day. So when I arrived in Colorado and was, through pure kismet, referred to what I can really only describe as a healer I said “fuck it why not?”

I’m not fully prepared to go into all the details now but she threw the book at me. Supplements, herbs, weird machines, biofeedback, and other stuff I fear to put into words as it sounds like quackery. But god damn if it isn’t working.

I’m quite tired from a busy day (a nice change from just always being tired for no reason) so I won’t belabor my writing just to pad the word count. But if you feel like you have health issues that aren’t being helped by traditional medicine what have you got to lose by asking around for some alternatives?

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Chronic Disease Chronicle

Day 24 and Going Easy On Ourselves

I keep a daily journal with some terse observations. I found it a manageable habit over the course of several years. So I was disappointed to look back over January 24th’s 2020 log today. It seemed as if everything in my life had slightly better metrics.

I couldn’t quite figure this out as I think in general my life is going quite well. I’m happily living in Colorado. I’m near my parents (even if needed isolation has meant seeing a lot less of them than hoped). I’ve had some excellent health breakthroughs thanks to more holistic care available in Boulder. So why did it seem like I was struggling more year over year?

And then I realized, oh of course, I just got used to the pandemic. The stress is clearly more but I’ve acculturated. Last January it hadn’t hit daily life yet. The daily stress and turmoil of an uncontrolled disease was still in its “oh shit if this hits us it will be bad phase.” A year along and I’ve become accustomed to the little indignities and struggles of pandemic living. But even as I’m happy with the changes it’s brought to my life it has sadly lowered the quality of life in meaningful ways for everyone. I don’t like dwelling on this as I need the improvements to be meaningful too. And I’m sure they are in ways I’ll appreciate once (if?) this all goes back to normal. But I know it’s going to be another six months from here.

I’m generally optimistic about my preparedness for all types of outcomes. And I am thrilled for the four year reprieve that comes with not having to constantly hear about political news. But this is all still taking its toll. So maybe it’s ok if my medication load is a little higher. I’m alive and well. Who cares if I need a bit more support. If I don’t feel like I look and move as beautifully and easily as I hoped that’s alright in the face of a generational crisis. I can take it easy on myself. If it’s all frustration and pain that’s no way to live. I don’t need to fight for progress every inch of the way. Sometimes it’s alright just to be comfortable and alive.

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Chronic Disease Chronicle Media

Day 21 and The Fast

A perennial topic for the harried is the benefit of fasting. A timeless religious tradition and spiritual practice, fasting cleanses the mind and body. Typically when I fast I do it with food. And I generally do my 7 day water fasts over the Holy Nights between Christmas and epiphany. But as I push through the final stages of healing my previously chronic illness I am considering a media fast instead.

I have a consistent meditation practice but the kind of mindfulness that comes from a break in the information flow seems more appealing. I’m exhausted from the constant crisis of the past three weeks as we careened from Georgia to the Capital insurrection to media deplatforming and silencing to finally the Inauguration. I had my hilarious shopping binge where I picked up every relaxation facilitating product I could find. But perhaps it’s time to admit I need some forced distance between me and the information firehose.

A proper retreat requires a significant break with outside stimulation. Which I’m not entirely sure is necessary. But I am concerned about overstimulation from media arcs both political and pandemic related. In Dr. Sepah’s original writing on dopamine fasting he presented it as a way to regain control over automatic rigid behaviors that have negative stimulus triggers.

In his words this type of cognitive behavioral therapy “weakens the classical conditioning in a process called ‘habituation’, which ultimately restores our behavioral flexibility.” So perhaps rather than seek a fast or a retreat or a detox I’m simply looking to break the impulses and anxiety that the media arcs have implanted in me. I do not wish to engage in the narratives of anxiety or jubilation (neither have inherently more truth) when they are not my own impulses or emotions.

My energy and my emotions are my own. I need them for my own health. They are not meant to be manipulated by outside players with their own agendas. That I need my energy for my own reasons should not even need saying. Media or political players don’t own me. There is no moral obligation that I stay tuned in. My attention cannot save anything but myself. So I will explore putting some distance between myself and the media for a but. My goal is to break from reactivity that was created externally. I’ll still be writing daily. And I suspect I’ll dabble in the bits of Twitter that bring me enjoyment and connection. But I’ll give myself the space to heal.

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Chronic Disease Chronicle

Day 18 and How Much Money Did My Unborn Child Make You?

I’ve never been much of a privacy nut. I figured I came of age too far into surveillance capitalism to ever truly recapture the dignity of my own body. I thought the classic tag “Your Privacy Is An Illusion” on Gawker was genuinely funny. What was the worst that could happen to me?

I was an early adopter of quantified self. The industry’s rise dovetailed just well enough with the security Obamacare provided. By outlawing insurance companies from discriminating against preexisting conditions I figure it was safe to use my data to improve my health now.

Prior to that I engaged in various bits of dodging having my chronic conditions logged, avoiding telling doctors I took even the most banal of medications like a daily allergy medication. After it passed I joyfully logged everything.

In hindsight, this may have slowly shifted my mindset towards my own commodification. Again, an issue never at the forefront of my mind as I worked in aesthetics. My job has often relied on putting metrics on the physical ephemera of bodies. But the inexorable progression of viewing my body as a commodity led me to a terrible choice: I froze my eggs.

At the time my husband and I were busy with careers. We had the disposable income to “buy an insurance policy” that would allow us to treat a life altering decision like having children with the casual mindset of buying an insurance product or making a moderately sized investment decision.

We were referred to the “La Mer” of fertility clinics by a friend who had successfully conceived through their help. Mind you we didn’t know if we had fertility issues, this was purely about optionality. Indeed genetic testing didn’t reveal anything shocking. We did it because we thought “why not, it’s just some money” as we may regret not having given ourselves the option. God damn we were stupid. We got sucked into the marketing hype.

Freezing my eggs was invasive in a way I simply couldn’t conceive ahead of time. No pun intended. I thought it was some extra time and drugs. At every step of the process our fears and questions were allayed with the utmost professionalism. The risks were low was repeated over and over.

It felt like we were buying a mutual fund. Sure there were some risks in the fine print but really we were investing in our future. It’s only now that I realize if I thought it was such a wise investment why were both sides so clearly invested in the transaction closing? The legalese and paperwork ran was hundreds of pages.

Surely at some point someone would have pointed out it’s not without risks. And it’s also not remotely guaranteed. The cohort of women in my social circle were all sold on the benefits of egg freezing with its potential to finally liberate us (from what who knows) only to find it was just another product that had a high price tag physically and emotionally.

You see pregnant women are worth a lot of money to data brokers and advertisers. So of course the people at the start of that arc are going to cash in on that land grab. The clinic was getting upwards of $30,000 from a few months of care from me. Plus a subscription fee to keep them on ice. No wonder the egg freezing game is quickly becoming a status symbol for the upwardly mobile making it just another purchase for well funded venture backed millennial girl bosses.

I’m honestly astonished no one said a fucking thing. Not a peep. Just a glance at the fine print. No maybe you should talk to a counselor. No here is what could go wrong. No here is how you might feel. No disclosure or discussions of some of the outlier cases of how these hormones might impact me. Where were the angry right to life folks when I needed them? All those abortion laws that tell women the risks might have actually been useful here. Ironic huh?

Because I wasn’t a picture of health. I’d struggled with some inflammatory conditions as a kid along with a never ending parade of “allergies” and aches and pains I mostly ignored with an Advil. But no one ever brought up that being stimulated to produce eggs for harvesting might set off a chain reaction with my latent autoimmune complaints. Highly unlikely anything goes wrong. It’s low risk. It’s just not discussed beyond platitudes.

And so I thought it wouldn’t be a big deal. Except that it was. After two rounds of retrieval (11 eggs of which a portion are fertilized) life was supposed to go back to normal.

Except that it didn’t. Slowly but over time I became quite sick. I developed an autoimmune disorder that leaves me in constant chronic pain. I had to sell my startup and stop working entirely.

Of course, it is still not definitive that the hormone treatments kicked off my illness but the endocrinologist and the rheumatologist tell me it’s the most likely culprit. So what I want to know after having my life completely torpedo by an elective procedure, is who made money off my unborn children? Children I may never have as (updated on 12/10/22) five years later my health has not fully recovered. I am still too vulnerable to carry a pregnancy.

Who profited off my poor health? Who thought this was a consumer product? And why oh why was I dumb enough to believe them. My best guess? The business of birth is simply too lucrative for us to treat it any other way. I’m just another outlier. Maybe someone else will use those eggs and unwittingly trap their kids into the next cycle of commodification of their bodies.

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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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Chronic Disease Chronicle

Day 10 and The Migraine

When I committed to writing a long form piece every day I told myself a lie. I told myself It was no big deal to make a daily commitment. I told myself I’d find a way to put fingers to keyboard no matter what.

I told myself this lie knowing full well that willpower was never issue. My addiction to my willpower was the issue.

You see I’m a workaholic. And I made my physical illnesses significantly worse because I tried to exert willpower over them. I tanked my body into a kind of rock bottom that forced me to stop my whole life.

I told myself I physically couldn’t do it anymore. But that was a lie too. Even at my worst physically I had secret. I could still work through it. I could muster up my resources and be “on” for just long enough to get a job done. And then I would crash. Bed ridden. Pain addled. But I could will myself to action. I only began my recovery when I admitted to myself that I wasn’t willing to pay the price anymore. I knew eventually I wouldn’t just crash. I would force myself to perform when weak and I’d kill myself. I knew deep down my sickness was that I had the willpower to kill myself with work. So I decided to turn that willpower towards recovery. I stopped. And I healed.

So I’m a bit sad to see myself caught in the same lies again. That willpower is what matters. That I can always do what needs to be done. That I lied to myself by saying that it was no big deal to write every day. Because some days I won’t feel well. And I’ll be tempted to use my willpower to overcome it in order to keep my promise that I will write every day.

I bring all this up because I have had a migraine for the past 24 hours. It came on as was writing yesterday’s post. I felt it in my forhead building. I crashed out of an important virtual gathering last night crying on the floor as I dumped my dresser drawer searching for an Imitrax. I’ve been struggling with the migraine all day. So the post I had planned to write (media training for normies part 2) has been at the edge of my addled brain all day. It took till 6pm for me to realize I’d relapsed. I was going to use my willpower to power through the lie that that I could do it.

Except I can’t. Noises make me cringe. Bright lights make me shrink back. I’m sick to my stomach. I couldn’t bring myself to go for a hike in the fresh snow today even though I love stomping through undisturbed powder.

So I’m giving myself a pass. I’m admitting the lie to my teller. I won’t write up some advice on media today. Maybe I won’t write it tomorrow either. I’ll do it when I do it. I won’t try to prove to myself what I already know. Willpower isn’t the issue. Willing myself to recognize my limitations is the challenge. One day at a time right?