We are now at the Cabrillo Music Festival in Santa Cruz, and everyone who has not seen me in a year has been asking for an update. In a nutshell, these are the facts:
Next MRI is in a few more weeks. (The last one was 11 months ago.)
The partial retina detach from chorioretinopathy is holding. A few weeks ago a retina specialist checked me out. There is still a scar at the back of my right eye, and along with it a little visual defect. It won't heal, but it is much smaller that the original red dot.
No "brain shocks" at all for many months now. Those may be gone for good.
Managing the diabetes insipidus (DI) is really the hardest part of all this. Every day I go through the cycle of aversion to salt, extreme thirst, "breakthrough" (where my kidneys flush everything out uncontrollably), then the nasal spray with the hormone that shuts the kidneys back down again. If I don't do it right my body retains too much and I bloat up or get sick. It's important to let the breakthrough happen thoroughly. But in flushing myself out I can also become deficient in vital things like potassium or sodium if I am not careful about what I eat. Last night at the rehearsal something was not right. Medium headaches, a "frosty" feeling in my bones, and weak hands.
At Cabrillo Festival 2011, I was determined to make it through the whole thing, strong from start to finish. I did that, but I also had a severe crash (or "body shut down") when I came home. I have certain allowances for managing my hormone replacements, and last year I—um—kind of abused the privilege, turning myself into an indestructible hormone man. I felt great for the festival, but of course I crashed later.
For the past year I have been more sensible about my limits, staying in the center. I pace myself to peak at concerts, sometimes at the expense of rehearsals, but that is just where I am right now, so grateful for a work environment where my colleagues trust me to figure it out. My goal for Cabrillo this year is to play great at the concerts and then not experience any post-Cabrillo crash when we return home. I think I can do it.
Saturday, July 28, 2012
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