Tag: Disability

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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 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.

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Chronic Disease Chronicle

Day 54 and Fat Fingers

I’ve got an overactive immune system which has occasionally manifested itself in frustrating skin conditions like eczema. They are mostly irritating but rarely debilitating. Case in point? Despite being on a variety of immunosuppressants I got some inflamed skin which got infected. I stupidly ignored it despite it being my thumbs. This matters because my right thumb is bandaged up and covered in antibiotics making typing very challenging.

Literally none of this matters except to say that my longform writing for today is just going to be one paragraph because my only other option is talk to text and that will leave this even more rambling and disjointed than usual. But I have to put something on paper every day so this is it. Hopefully tomorrow my thumb is fine and I can get back to writing about start ups, or finance, or Neil reactionaries, or whatever I damn well please.

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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 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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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.