It's been a year since I got out of the hospital on Evan's 8th birthday, July 18. We were at Lake Tahoe for his birthday this year. That was a goal, to return to Tahoe, which we missed last year because of my illness. We stayed in bnb Tahoma Meadows, where they have a wheelchair accessible cabin we reserved a few weeks ago.
Back from Tahoe, I contracted my 3rd urinary tract infection in the year since hospitalisation, fortunately not experienced during the trip, and I am on the 2nd antibiotic round (ciprofloxin) after the first medicine (cephalexin) was too strong. The first antibiotic wouldn't let me sleep; I couldn't tell if it was fighting me or the infection, so Dr. Soliman called in another prescription which is hopefully clearing the infection.It makes me too weak to do physical therapy. For 3 weeks I've had this infection.
6 weeks ago I was measured for a custom wheelchair. Sue Sargent even lent me money to try and speed up the process, but I seem to have done everything to derail our order. My PT instructor Shari was out-of-town for the appointment with the chair salesperson, who showed me 2 examples and measured me.A week later, Shari advised against the fixed-frame wheelchair, saying it would limit my leg use, so I revised my plan, looked at other models, and cancelled the TiLite chair that had been ordered. Little did I know that this change would delay the order for weeks.
Meanwhile, Georgetown University Hospital announced that it will hold a trial of the chemotherapy drug Nilotinib on MSA patients. I am trying to find a way to be included in that trial, since I was made aware of Nilotinib, and the positive results it has had on some Parkinsons patients in a GU trial.
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