Tag: Trauma

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Chronic Disease Chronicle

Day 81 and Good Patients

I don’t know why I feel compelled to act on a doctor’s opinion (literally every doctor) when I can think critically about any other form of authority. I’ve got some kind of deep seated fear of disobeying a physician’s suggestions in a way I just don’t with others traditional authority figures and I wish I could break it. American doctors love to prescribe drugs for every random symptom or blood result. And I’m fearful to say no. Even though I know I can’t be on about half of what I’m given

Absolutely had a anxiety moment this morning as I’m due for a metabolic blood work up and I am not sure I have the energy for the shaming if I “fail” that my endocrinologist will throw at me. I’m a healthy weight but I was overweight earlier this year and I leave in fear of that fat shaming coming back. At this point I just let her prescribe the drugs and don’t take it all. I’m sure I’m in for a lecture about some thing.

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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 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 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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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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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.

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Chronicle Politics

Day 38 and Better Fear Than Anger

Culturally in America we’ve lost touch with the value of fear. Which is a shame as fear is a root emotion (along with sadness and happiness). We’ve became enchanted by anger instead. But anger is not a root fear. Anger is the steam rising off of fear. Cultivate, explore and release your anger and underneath you will find the fear that drives the issue.

We’ve decided we don’t like fear though. We’ve perverted it into a weakness. Especially during the pandemic. Anger on the other hand as won cultural acclaim in America. We use phrases like “right to be angry” and “righteous anger” rather than exhuming a deeper truth that will be more revealing. Fear is good though. It cuts deep. Fear shows us the child that lives in our innermost self, revealing the terrors and traumas children feel from being powerless, abandoned, and small.

Even as we cultivate strong bodies and swift minds as adults, the child who was betrayed by the accidental lapses by our parents remains inside of us. In psychology they call that the inner child. Perhaps your inner child is angry. Mine often feels anger. But at her heart the child is just scared. But rather than answer the questions raised by our fear and overcome it, we are seduced by the power of the anger steaming on top. We cultivate heroics to nurture the anger. Americans craft elaborate myths about the heroic value of anger.

I’m not suggesting you are not angry. Or that your anger has no place. Nor am I invalidating the source of your anger. I am however asking us all to dig deeper. Learn why you are angry. Then go deeper. Find the fear of the child that is inside you.

My fear? That I’ll be abandoned by my people during this pandemic. Just like I was abandoned as a child. I got angry seeing the choices people made. But underneath it was simply the fear that repeated a childhood trauma that I wasn’t important enough for anyone to save me. Knowing that helps me save myself. I take responsibility for my own fear. I can use it as an edge if others don’t work on their anger. But I’d rather we as a nation work through our shit instead.

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Chronicle

Day 37 and Boundaries

I recently did a Twitter poll where I asked folks what they used to develop their emotional capacity. I listed therapy, meditation/mindfulness, coaching and “nothing” as the options. A full third of respondents choose nothing.

This really took me by surprise as much of my follower base is made up of folks in the technology industry along with significant business and finance types. Most have Silicon Valley mindsets tend to prioritize hobbies like biohacking and performance. Having insight into your mental and emotional state has become a burgeoning part of the quantified self movement. So finding out that a large number of people don’t invest in their mindset was, to quote Geoff Lewis, a narrative violation. I really thought we were all committed to parenting our inner children along with our Wim-Hoff breathing, weight lifting and protein eating.

But maybe I shouldn’t find this odd. It’s much easier and certainly more linear to put gains on your squat and cut your fat mass to show your abdominal muscles. The math on that can be done on apps and coaches can help along your progress. It’s trackable. Clear metrics for success exist. OKRs for your body. But learning to let go of self limiting beliefs, check your desire to self victimize, or refrain from vomiting your emotions all over your friends is less quantifiable.

Still you can track your meditation minutes in Calm or your time with a professional coach which your venture fund offers with their new fangled mental health benefits. So why is it that a third of people happily clicked that they were fine not doing anything for their emotions?

I suspect it has something to do with the challenge of knowing yourself and that knowledge necessitates drawing new boundaries. The further one gets in a journey of emotional and mental health the more one has to let go of habits and people that undermine us. Sometimes it can even mean giving up all the things we thought made up our life. Such is the high price of happiness. People may reasonably make the calculation that it’s too high a cost. That being unhappy isn’t so bad. That boundaries are too expensive for someone like them. So they tolerate what they’ve always known as the unknowns of pursuing happiness is too much.

It’s quite likely I’m overthinking this one as I’m currently reminding myself of the value of boundaries in my own life. Perhaps it’s as simple as being a fish in water. If you don’t know the water is there why question it? A third of people may have never considered the benefits of questioning their existing beliefs and emotions. Which saddens me a little. But also reminds me that investment in emotional growth is a significant edge.

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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.