53,
I'm beginning to hate clinic days for that very reason. To be sure, I appreciate the efforts and the concern from all of the staff, doctors and nurses but, in the end, it really does turn out to be "what else can't I do now?"
I had my clinic this Tuesday, and my respiratory numbers took a nosedive... that sucked! The weakness and atrophy everywhere else I can see and gauge on my own, but the 'numbers' they give at the appointment never seem to be a source of comfort!
Granted, I've been doing the quarterly clinics for 3 years now, so by comparison my 'progress' has been slow and not much worth mentioning. Still, it sucks when the downward slope gets steeper, and the progression faster than it has been.
When the hell are the smart folks gonna find us a treatment?!? Sure am glad they're trying, but in the famous words of Yoda, "No try; do!"