Rumination – Health and Healthcare

It’s late in the morning, sunlight streaming through the trees. The cicadas are singing loudly with the birds working hard to keep up. Music is playing softly from my hydration vest, Thirty Seconds to Mars drowning out my ragged, raspy breathing (note to self #1 – use inhaler before next run in the woods). In the back of my mind is the reminder that the last time I was here, in October of 2016, I took a seemingly innocuous tumble over a root that resulted in an avulsion fracture of the cuboid bone in my foot. I’m rather klutzy, prone to walking into walls at my own house, so tripping while trail running was nothing new. Until this episode, the most severe injury from one of those tumbles was a badly scraped shoulder (note to self #2 -don’t stumble while running down a mountain).

That injury capped off what had been a horrendous couple of years of running. Early in 2014, work stress triggered a severe flare of my autoimmune condition-Hashimoto’s thyroiditis-that would take over two years and multiple doctors to corral. By the second half of 2016, I was still a llooonnnggg way from my former athletic self, but was healthier than I’d been in nearly three years and was incredibly excited about regaining fitness in 2017. The broken foot tampered my expectations, but having recovered from a different broken bone in the same foot 14 years before, I wasn’t too concerned about long-term effects. I figured this was just one more setback in a long line of set backs, not knowing that another setback-a much bigger one-was waiting just around the corner.

I wasn’t yet out of the boot when I noticed a mysterious and significant increase in fatigue. I’d started a new job in November, one that looked to be a great mix of work that I love and not TOO much responsibility (small team, small budget). I’d not had good luck the past few years finding a balance of work that I love, but that didn’t adversely impact a tenuous recovery from the Hashi’s flare, and I thought I’d hit the jackpot. As the months went by, the fatigue worsened and I got sick frequently which was highly unusual. It was clear something was up, but my doc had a difficult time pinpointing the cause. By May I was barely functioning outside of work, running very little (if at all), and losing touch with most of my friends. I used  98% of my daily (and greatly reduced) energy reserves to get through the work day.

When I left for Wilder late that month, I was in a pretty dark place. I doubted that I would ever be well again, that I would be able to be present in my relationships, that I could do meaningful work, train and race as I wanted, essentially live life on my own terms. It became quite clear that if I was going to crawl out of this massive hole I’d fallen in, I needed to make significant changes. M encouraged me to leave my job, as even if we couldn’t figure out the cause of the latest issues, removing a big item from my to-do list would have to help. I resisted taking such a big step, but Wilder created enough space in my head that I was able to see that he was right. Regaining my health was clearly going to take sacrifices, sacrifices I really didn’t want to make. It felt like a crossroad – do I continue with the status quo even though clearly nothing is changing, or do I make some bold changes with the goal of restoring my health and living the life I envision for myself? It sounds dramatic, but those were the stakes. By early June, I was a shell of my former self, in every way.

As I ran through the woods earlier this week, all of this was racing through my brain…what has transpired since the day of the fall, how nine months later, I’m as hopeful as I was then about the future. I’m on week four of what I’m calling a sabbatical, having left my job at the end of June. I don’t know how long this time off will be, but I do know that I won’t make plans for what’s next professionally until my health is restored, whatever form that ends up taking. I’ll never know if the transition last November was too much too soon, but I won’t risk making that mistake twice. Hopefully the time away won’t be more than a few months, but time will tell. I’m grateful that we’re in a place where I can take this break. Having spent the last several years working in public health, I’m acutely aware of what a privilege this is. I have a few other “conditions of satisfaction”, as we called them at Wilder, for this time off, but the most important one is getting well. It’s been over four years that I’ve lived in a body that is unfamiliar, one that has been pushed to the brink more times than I can count (not by choice), that hasn’t been honored and respected in ways it needed to be. I can be a bit deaf when it comes to taking care of myself, but I’m finally listening.

In the backdrop of my health issues sits an incredibly skilled physician. Many people caught in the vortex of autoimmunity spend years searching for an accurate diagnosis, and then in some cases a few more years searching for a physician skilled in navigating these conditions. I was two years into this most recent flare before I found my current doc. The previous one was unconcerned with an unexplainable 20 lb weight gain (20 lbs I have yet to lose), crushing fatigue and exercise intolerance (how is exercise intolerance in someone who runs marathons for fun not concerning??). He also treated only the thyroid condition, with no regard for what caused the autoimmunity, which is substandard care these days. I drive 75 minutes one-way to see my current doc. She is a Hashi’s patient herself, which means I don’t spend an obnoxious amount of time describing seemingly vague symptoms. And as a functional medicine practitioner, she’s invested in locating the root cause of a misbehaving immune system, outside of treating the malfunctioning thyroid. While my most recent issues don’t seem to be rooted in the autoimmune condition, she has been relentless in trying to identify the cause. This means I don’t have to spend tons of energy advocating for myself, trying to persuade her that something isn’t right. She’s the first doc I’ve had where I haven’t had to do that. I can’t articulate what a relief that is.

My insurance covered the great majority of the tests, including upwards of $7k in blood work. Outside of my copay, insurance paid for every office visit. I paid for one hormone test out-of-pocket. In the context of the current healthcare debate, I can’t comprehend how anyone who’s benefited from the best of our healthcare system can vote for any legislation that would deny even one American access to care. I don’t care what the trade off is. I researched extensively to identify best practices for my condition, and to identify what type of practitioner would be able to help. I drive 80+ miles one-way to her office. So many people don’t have that capability, whether it be access to a computer and internet, time to dive deep into research, an educational background that provides skills to sort through that research, reliable transportation, a VERY supportive spouse/partner, and/or a schedule flexible enough for appointments every-other-month and regular blood draws . My recovery is bathed in privilege, and that infuriates me for every patient who doesn’t benefit from such advantages. Living with chronic illness is challenging enough, especially an illness as misunderstood an autoimmune condition, without the added layer of having to advocate extensively for appropriate care, the need for adequate insurance to cover such care, and the skills/resources to access good care. It shouldn’t be that hard. We can do better. We must do better.

The current debate in national politics fills me with great despair because people’s lives are on the line. It is not hyperbole to say that people will die if much of what the Republicans are proposing comes to pass. Those of us who “have” bear responsibility to those that “have not”. Full stop. If that means I’m partisan, political, a snowflake, so be it. It makes me itchy that I benefit from the best of our system, while so many people sit outside of it, and while certain politicians are doing everything they can to ensure even more people are excluded. From healthcare. What have we become?

4 thoughts on “Rumination – Health and Healthcare”

  1. Thank you, Kim, for your honesty and compassion. I am at a loss as how to respond to the cruelty and willful ignorance emanating from our elected officials and others (that is, beyond furious emailing and petition-signing and small public actions). Thank you for lifting your voice to tell your story and to advocate for others who may not be able to tell theirs.
    Wishing you health and peace,
    Carrie (Wilder)

  2. Kim! I can’t imagine how frustrating it is to live in body that doesn’t feel like you but I’m so happy that you are taking this sabbatical (and setting conditions of satisfaction!) and taking care of yourself. I know that it can’t be easy but I hope that you’re able to find some more answers and are feeling healthy and whole soon. And the whole healthcare debate? I can’t. I honestly cannot comprehend what is going on. I’m at a complete loss for words.

    Thinking of you xoxo

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