A sweet friend died unexpectedly on New Years Eve, and I became ill shortly after with an ear infection, fever, chills, and of course HKPP. I've been bedbound ever since. I managed to continue tweeting and facebooking from bed, but haven't done much else.
I've been on an antibiotic, and anyone with HKPP knows how difficult it is to function on one. Antibiotics inhibit neuromuscular transmission, so people with muscle disease are bound to feel negative effects. As of today, I'm up and around a little. On the walker, mostly just making sure I eat and take my meds. Then back to bed.
The doc who saw me said my left lung sounded fine, but that she heard very little coming out of the right one. This may explain why I feel like I'm being stabbed through my chest and back 24/7 and feel like I'm never getting enough air. They confirmed that it wasn't pneumonia, so I've requested a referral to a pulmonologist. Still waiting to hear back about it.
My mother has withdrawn again, refusing to talk to her cousins about HKPP like she said she would, and doesn't want to discuss it. So needless to say, back to the drawing board with the family. And I'm also having issues obtaining medical records to send to Germany. Being a 7 hour round-trip from my hospital is a problem. So is the incompetent medical records staff who ignores messages and loses important paperwork. Whatever. I'll take what I can get and get it to Germany when I can. I just hope the researchers don't give up on me before that happens.
Sorry for being a downer today. The rest of the year will be better. I look forward to it.