Monday, January 18, 2016


Even before I knew I was sick, I tried to be strategic in using my spoons. Sometimes this meant things like eating frozen pizza instead of cooking dinner, or limiting the number of errands I ran in a day, or trying to plan for at least one full day off a week.

Writing a dissertation takes a lot of spoons. As does living in the frozen tundra, in the winter particularly. These are things that are expected, and I don't feel bad for. But I am constantly embarrassed by the number of spoons managing my medical care takes. My GI retired in December of 2013, and I haven't seen a GI (or had any labwork done since). The thought of making a new patient appointment and shuffling  medical records halfway across the country makes me want to cry.
I think I could *almost* handle it, if I didn't have to call and refill my prescription once a month.

Once a month I call my specialty pharmacy's automated line. The autorecording mispronounces my name. I say my birthday for the automated voice, which then asks if I'm calling for my medication (which it also mispronounces). On a good day, this just leaves me cringing. On a day like today....I had to call three times, because the machine listening couldn't understand me. Then I have to speak to a human being. I can't *tell* them exactly what I want ("please ship medication out to me on X date), they have to verify my date of birth, address, how much medication I have on hand (none! I wouldn't be calling you if I didn't have to!), and ask about supplies, tell me that if I have my medication shipped signature required that someone has to be there to sign for it (Really? That's the point. How many people do you know who want a package valued at $1500  just left on their doorstep?). All while seeking to be patient and polite to the poor call center rep who has to do this all day long. 

It inevitably leaves me shaken. And yet, if I don't make these phone calls, my meds don't show up. They're a nonnegotiable priority. So where do I take those spoons away from? I *can't* allocate all my spoons to protecting my health, or finding a job, or finishing my dissertation. I'm not allocating nearly enough spoons to any of those things, but they're all nonnegotiable. So my dissertation generally gets priority, because it will end, and presumably, the more spoons it gets, the fastest it will end. I only hope that I haven't completely destroyed my health before it's finished.

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