There's somewhere I want to be today. Somewhere I committed to being today (shortly before the Lyme diagnosis). But alas, I'm writing this blog from the comfort of my bed. I get to watch the occasional snowflake meandering by my window while I sip blueberry tea to my cats' snoring-chorus. I also get to watch red squirrels go (happily) in and out of my shed. But I'd rather be at today's meeting of the Maine Poets Society.
I'm not there because of the unpredictability that has invaded my days and nights. Overall, steadily, I am improving ever so snail-paced slowly (I'm grateful for that). But Lyme patients can't PLAN on feeling one way or another on a particular day. Therefore, plans are always fluid. After embarking on a course of antibiotic therapy (combined with moving towards better nutrition, rest as needed, and a few vitamins/minerals), I seemed to be tolerating the combination. I worked up to this optimal dosing over the course of the last two and a half months. Monthly blood-monitoring tests: fine. Side effects: minimal (i.e. constipation—I could try to find a better word for it, but this is a Lyme blog; unpleasant is unpleasant).
Over the course of a week or so, I began to notice some discoloration of my teeth. At first, I thought I hadn't brushed/flossed/Reached/Waterpiked well enough and I'd missed a bit of a prune (which I'd eaten for you-know-what). I re-flossed, re-Reached, re-Waterpiked. Took a quick look and figured I'd gotten the prune out. I was getting ready to go out for lunch on Valentine's Day (I'd love to have said dinner on Valentine's Day, but I don't go out at night yet due to the overwhelming fatigue). There it was again (or, still). I grabbed my magnifying mirror and checked. Definitely a tooth was turning dark. I CANNOT BE JACK-O-'LANTERN GRAMMIE! My mind spun back to the laundry list of possible side effects listed on my antibiotic handouts. Tooth discoloration. I'd seen it mentioned somewhere. I called my doctor and he advised that I stop one of the meds (the one most likely to cause tooth discoloration). I see him next week, at which point we will determine where to go from here. If we make a substitution, we will have to attempt to achieve a fine working balance again. We will have to find a substitute that won't give me migraines (as did two others we previously tried and myriad other substances). We'll get to start almost from square one, navigating a new and unpredictable course.
There will be new instructions that come with a new antibiotic, new possible side effects. I've gotten quite used to the routine of taking one of my antibiotics while sitting up (as lying prone is apt to cause vertigo) and on an empty stomach. It's given a whole new set of things to think about. If I take an afternoon nap, I must wake up in order to eat dinner early enough that my stomach will be empty at bedtime. If I sleep late I have to wait two hours after taking my medicine to eat breakfast, no matter how hungry I might be. If we go out for breakfast, same deal. I'm fortunate here that I'm not a big breakfast eater and it's usually no problem.
And that just leaves us with one issue: how antibiotics can effect regularity. No day of fun can be planned if I need to be just a few feet away from my bathroom at any given moment (if, by chance, the combination of fiber I gambled on is working). On the other hand, any fun to be had is thwarted if I'm not regular. The cramping. The agony. Right now it seems to be one way or the other and I have not found a solution that is practical. We'll see what new challenges are to be had with a medication change next week. Ones I haven't even thought of yet, I'm sure.
But I vowed to write this out ("write Lyme away") when I began this blog. And that's what I'm going to keep doing. By addressing the small battles lost, and the small battles won every day. Every day that I (and hundreds of thousands of others) choose to get up and look ahead (even if we're not where we want to be that day) towards a new day in making recovery happen.
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