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Chronic Disease Chronicle

Day 50 and Validation

The chronic disease landscape is a surprisingly contentious one. Despite significant numbers of Americans suffering from autoimmune, rheumatoid, and inflammatory conditions, the general practitioner population is often hostile to to patients who come in with vague but debilitating symptoms of pain and fatigue.

I’m lucky. I was given a diagnosis relatively early in my health care journey, but I still spent a fair amount of time getting dismissed. I got offered every psychiatric drug in the book (and happily accepted since pharmaceuticals will be good trading in doomer times), but took months before someone ran a useful biomarker panel that gave me a diagnostic direction. I’ve learned that my case is more complex than my initial diagnosis but I’ve nevertheless leaned heavily on being one of the privileged in chronic care that had a diagnosis and clinical work to lean on. Not everyone is so lucky.

Because of this experience, I keep very close tabs on the controversies and infighting in academic medicine. So I was thrilled to see a ‘blue check’ institutional voice discussing the frustrations that come with chronic disease in a heartfelt opinion piece by Ross Douthat in The New York Times. He used long haul COVID to introduce the many controversies surrounding Lyme disease (which I didn’t not know he suffered from) and his own journey back to full health. He discussed the anxiety and exhaustion of being told you have a disease with symptoms will never go away.

The reason for this particular editorial is the publication of a new book called Chronic

The Hidden Cause of the Autoimmune Pandemic and How to Get Better Again,” written by Dr. Steven Phillips, a Lyme practitioner and researcher, and one of his patients, the musician Dana Parish. The book makes the case that the spread of what the authors call Lyme+, an array of tick-borne pathogens that often infect patients simultaneously, is responsible not just for the more than 400,000 cases of Lyme disease diagnosed each year in the United States but also for an unknown number of chronic infections beyond that — undiagnosed or misdiagnosed and left untreated because of a combination of testing failures, institutional bias and the horrible complexity of the diseases themselves.

He writes with a surprise amount of nuance and empathy (not something I associate with him or editorial) and covers a lot of ground.

While I’m officially an autoimmune and rheumatoid patient, I’ve been slowly working my way into the chronic infection space as I’ve tackled more and more of my symptoms. It turns out that inflammatory autoimmune diseases like ankylosing spondylitis (my official diagnosis) and reactive rheumatoid conditions often overlap in clinical presentation with trigger infections that rarely get caught. I only saw significant improvement in my associated symptoms once I went further into some of the treatments Douthat discussed.

Some of it feels like woo and some is just not fully settled science. It’s all extremely frustrating to live through and has required significant time and financial resources. I’ve often felt like giving up as so much of the medical establishment tends towards “learn to live with it” attitudes. I have simply refused to live a life bedridden, exhausted and in constant pain even if doctors have said that’s as good as I’m going to get. I’ve had ups and downs as the pandemic has gotten in the way of access and treatment but I’ve generally made progress.

I cannot tell you how gratifying it is to see institutional heft and loud voices discuss what I’ve come to associate with dismissed and discounted communities. Frankly it’s nice to have a white man talk about it as much of the chronic community is made up of women. I know it sounds stupid but we just take men like Ross more seriously than we take women like me. And I’m at the very top of the food chain of women being upper class and white so I get taken relatively seriously compared to many patient populations. But nothing validates quite like a blue check dude saying yeah I’m living through this too.

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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 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

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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Chronicle Internet Culture

Day 25 and Ease

I’ve been giving a lot of thought to my self limiting beliefs lately. The ideas I hold about myself and the world that get in the way of me changing. And one I seem most attached to is the myth of hardship.

I’ve fetishized the idea that life should be hard. Working through tough problems is good. Sticking it out through bitter failure is worthy. That goodness, attention, wealth and status are achieved through a moral pain.

I’m fairly sure I got this ridiculous idea as some type of parasitic add-on from Calvinist thought. It’s also preposterously, comically untrue. Like objectively the wealth, status and power in human society do not come from anything even resembling moral good. It’s this annoying fact that gives socialists succor in an otherwise unforgiving climate of capitalism (an objectively true statement that equally frustrates adherents of communitarian philosophies.)

So somehow I’ve equated hard work with good. So instead of pursuing talents in life where I enjoy ease and facility I force myself into difficult pursuits. I rationalize this as noble. But my core self knows that it’s bullshit to keep me stuck in the mud

So I am trying to resolve to not poo-poo that in my life that flows smoothly. I can do well at life by being at ease. I can lean into my talents and enjoy where they go without judgment.

But in the immortal words of every thirst trap: feel cute…might delete later.

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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

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 joke “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. 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 saved 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. It felt like we were buying a mutual fund. Sure there were some risks 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? 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. Maybe you should talk to a counselor. Here is what could go wrong. Here is how you might feel. Here are some of the outlier cases of how these hormones might impact me. Where were the angry right to life folks when I needed them? 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. It’s just not discussed.

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.

It’s 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 is who made money off my unborn children? That I may never have as three years later my health has not fully recovered. 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. And someone else will use those eggs and unwittingly trap their kids into the next cycle of datafication and commodity childhood.

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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?