Notes on Unpredictability: Jack-O-'Lantern Grammie, "Sit Up and Take Your Medicine!" (As Long as You're Hungry), and The Agony of Too Little (or Too Much) Fiber

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.

Charts & Graphs & Symptom Progress

About a month after I began treatment for Lyme Disease (and a little over a month ago), I started keeping a graph to track my progress (improvement of my symptoms). I began with a piece of graph paper, assigning numbers to indicate how I was feeling. The numbers go from 0–25. 0 indicates "The Worst Day Ever." 25 indicates "Like My Old Self Again." In between are descriptions such as "Very Good Day/Slightly Symptomatic" and "Bad Day/Symptoms Severe." I have not had a 25 day. Fortunately, I have not had a 0 day. But I have had an 18. And I have had a 2.

The graph paper, pencil, ruler and penciled-in dots soon became tedious. Lucky for me I have a son who gets paid to create and analyze financial charts. I asked him if he would make me a rudimentary graph and I gave him the basic information. He created one for me in Microsoft Excel. I must point out that he made it easy enough for a spatially/math challenged person like me to work with. (I am still bitter that my math grade in college prevented me from graduating with Honors. I had a 4.0 in my major, darn it! The math instructor tried to help me. The math tutor tried to help me. I really tried to help me. I'll tell the entire sordid story if I don't stop now.) Back to the Excel graph. I just type numbers in a column. The graph automatically shows up. Voila! I can see my progress. I can see if I'm backsliding.

I learned to never assign a number for one day until the next. That's because some of my worst symptoms can occur after I've gone to bed or to rest in bed for the night. I've been tempted to do my chart for the day around dinner time—especially if I'm having a fairly good day up to that point. But I learned the hard way. Up until dinner time is is never an accurate indicator of my day. My stabbing/burning pains can get worse at night. My muscle pains can get worse at night. So each morning I assign a number for the previous day.

The purpose of the graph is to see my overall progress. A psychological tool. If I can see my progress on a piece of paper, I can hold onto the hope that I will eventually move into the 20-25 range. A factual tool. I can use it when my doctor asks me how I've been (instead of replying in general terms such as "awful" or "better!" I can show him). A chart such as this should prove handy for a brain-fogged Lyme patient such as me. I'm certain that if any of you are even slightly spatially/math/or even computer challenged, someone you know could create a similar graph for you. But if not, the graph paper, pencil and ruler will get you the same results. Visual clarity regarding your progress. And, I hope—hope.