I’ve spent the last couple weeks doing medical things. I was diagnosed with Behçet’s disease a few years ago, an autoimmune inflammatory condition affecting the vascular system, which causes issues like uveitis, joint and muscle pain, mouth ulcers, and skin lesions. It’s been treated with monthly infusions of Remicade for the past two years, which has alleviated almost all of my symptoms for the price of something like $25,000 billed to my insurance per infusion.1
I’d been sick since high school but my symptoms were either never taken seriously or never connected together. It wasn’t until my late twenties when I woke up one morning blind in one eye that I was diagnosed. I was prescribed prednisone then, and for the first time in a decade I felt normal, with no pain and a noticable new clarity in my thoughts. I’d forgotten what it was like to feel healthy. I went through a few separate rounds of steroid treatments but my flares kept returning, so eventually I was moved to Remicade and azathioprine.
The last couple years, with the Remicade infusions, I’ve been mostly symptom free. In July, after two years without any major flares and with no visible inflammation in my retinas or ocular nerves, my rheumatologist, ophthalmologist, and I decided to try tapering off the Remicade, lowering my dosage by a third, from 600 mg to 400 mg. I had two infusions at the lower dosage, one in July and one in August, before my symptoms started flaring up badly again. It was a sobering reminder that I am still ill and shouldn’t take my health for granted just because I currently have access to medications that make things okay. I have been feeling well again the past month or so since increasing my dosage back to 600 mg starting in September.
In the past couple weeks I’ve had a Remicade infusion in a new infusion center, traveled to Boston to see my ophthalmologist, saw my rheumatologist, had a physical, got an influenza vaccine, and had blood drawn. In a week I have an annual visit with a pulmonologist. I also turned 31 last week, and there’s a global pandemic with new cases trending upwards since July. It’s all put me in a bit of a pensive mood, thinking a lot about my health and the health of my loved ones, how fragile it is, and how I should spend a lot more energy than I do making sure the one body I have is in good condition.
First, I want to focus more on ways I can improve my health outside of pharmaceuticals: eating a good diet, exercising, and reducing mental stress. I know from experience that slacking in any one of those areas inevitably leads to me feeling more ill — and I have been slacking in all of them for a couple months now, because once I start feeling ill it’s very hard to find the energy needed to keep up those habits. For most of the year I’ve been cooking fresh meals almost every day with a variety of beans and legumes, grains, dairy, and fresh produce; for the past couple months I’m down to maybe one or two from-scratch meals a week, and relying more and more on frozen pizzas, frozen veggie burgers, and frozen fries. In the spring and early summer I was running two or three days a week, and I started practicing yoga as a way to destress. Yoga especially made me feel great. It was a huge stress reliever, and made my body feel great on days when my joints were inflamed and sore. But both habits I’ve fallen out of — just due to my work and my interests it’s easy for me to get lost in a book or a programming problem or something and “not have the time” to exercise. And it’s easy for me to ignore it when I’m feeling good anyway — why do I need to exercise if I’m already feeling strong and healthy? So I skip a day here and there, but eventually the days add up until I can’t remember when I exercised last.
Now that I am feeling good again, I’m trying to re-establish these habits, and pick up some new ones. Habits is the key word here: I think one of the reasons it was so easy for me to stop doing these things that made me feel stronger and healthier was because I never developed a habitual practice. Instead, I would run on the days that I felt like running; I would pick a random yoga video that appealed to me when I felt like doing yoga. Where does that plan leave me when I don’t feel like running or don’t feel like doing yoga? What I really want is a systematic program I can follow: do these things every day. I got a copy of A Systematic Course in the Ancient Tantric Techniques of Yoga and Kriya by Swami Satyananda Saraswati which I’m hoping will be just that, a set of practices I can follow every day and develop into habit.
I also want to pay more attention to the meditation and breathwork in yoga. There’s been a lot of stuff about Wim Hoff posted on Hacker News lately, probably because he has a new book coming out. Wim sells a course online where he teaches his method for improved physical and mental health, which involves breathwork, cold exposure, and meditation. I actually first learned about it from a study on the ability of volunteers trained in his techniques to voluntarily influence their sympathetic nervous systems and immune systems posted to HackerNews. I read it while I was in the waiting room to see my retina specialist. The study describes how the participants, trained in Wim’s techniques, were able to lower, among other things, TNF-α — Remicade also works by limiting the effectiveness of TNF-α. So naturally I was interested and wanted to learn more. I’m a little put off by the marketing, and I don’t like the guru/cult vibe that it can exude, but I do think it’s pretty clear something is going on with Wim’s method. I signed up for his free “trial” video course and have been doing the breathing techniques daily — if nothing else, they’re great at immediate stress relief. I don’t think I’m going to be paying for Wim’s full course any time soon (but who knows, maybe I’ll have a change of heart), but I do want to start paying more attention to my breathwork when I do yoga, and maybe learning some more breathing techniques. And maybe start playing around with cold exposure too, who knows. I did take a couple cold showers this week.
The other thing I want to do is start tracking my health more to get a baseline idea of what is “normal,” and so I can give a more accurate history and description of my disease at my various doctor visits. At one point I had a Django app that I was using as a health journal, but it had a very limited feature set and I stopped using it. I’m thinking about building that out again. For now I’ve been tracking symptoms in a Google calendar. I’d like to get more quantitatve data, but I’m not sure what to measure. Would the data gathered by something like an Apple Watch, for instance, be helpful to me? I’m not so sure, and I also have privacy concerns about where that data goes, or if I can export the raw data to do use how I want. I think ultimately the kind of device I want doesn’t exist yet. Pine64’s PineTime may be the closest to what I want, but it would require some hacking. Maybe that’d be fun?