It wasn’t intended to be an experiment. I wasn’t doing it on purpose. I didn’t skip my pills and then sit still to see what symptoms worsened and which stayed the same. Yet after accidentally letting myself go almost 40 hours in between doses, sudden changes took me by surprise and grabbed my attention. I wasn’t expecting to feel unchanged, but nevertheless I didn’t think it would be quite so noticeable this quickly. Fatigue set in quickly, but what really seemed like an outsized reaction was how stiff and sore I got so fast. My muscles completely locked up. I cramped, ached, and spasmed. More than anything, I whined. I sprained my wrist lifting a 20 lb bag of carrots. I had to let the Mr drive my car from Costco to the parking lot where we went separate directions because I was too sore. And I had to get one round of meds down before I could drive the girls down to Boulder for dinner. All of this for one and a half days skipped. Any time I start fantasizing about giving up all of these pills, I stumble on one of these days, and I vow never to stop treatment as long as I live.
I, like all of my brothers and sisters in chronic illness, get more than a normal share of unsolicited advice on how to treat my autoimmune diseases. I get lots of suggestions that my life would be completely healed if only I would eat certain foods, drink certain powdered drinks, take turmeric capsules or apple cider vinegar, meditate, walk, do yoga, or just think away my problems. I tune it out almost immediately. People think that they just want to fix me, and they think I should be grateful, but sometimes it is just too much even to smile and nod and say, “Oh, I never heard about that one.” Really what I’m hearing is “I think your illness is your own fault and you should stop being sick because it inconveniences me.” It is in this mindset that I very nearly rejected my friend’s suggestion to try the low-dose naltrexone. At first I thought he was telling me to try methotrexate, which is several steps away, and only if all else doesn’t work. After conversation and doing my own research, I decided it was worth attempting it to stave off symptoms of my unique cascade of autoimmunity. I ramped up slowly, and wondered over the last month or so whether I was actually just imagining the change in pain severity, that everything seemed so much more bearable. I know I’ve been falling asleep faster since I started it. But until I had the misfortune to skip two doses in a row, I had not fully grasped how much good it’s doung. I can only hope that it won’t take more than a day or two to get it fully back in my blood stream to get my pain back under control.
Being tired and hungry, I put up no fight when two little exchange students (XS and the Bonus XS from Finland who is spending four days with us) decided we needed to go get pho from our favorite spot in Boulder. I don’t know why it struck me as so funny, but I couldn’t get over two girls coming from far northern and southeastern Europe, and only once they’ve been in the US for 9 months do they get exposed to hip food from Vietnam and fall in love with it. Maybe it isn’t so unusual, but it tickled me regardless.
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