I agree as much as I don't here... Some days I really feel great and like I can do anything, just like everyone else. Then I think, this isn't even as good as normal, I don't know what normal is to know if I feel that way! It is overwhelming though, I go to get PFT's and I worry, I go get vitamin levels done, and I worry, I go get an X-Ray and I worry. I think, what will they find now? how many new dr's will this lead to,? how many more tests will need to be run to fully get an idea of how truly horrible this all is? I go home and I forget that there is a hospital full of people who just know I am going to die if I am not constantly being pumped full powerful IV of medications, doing clearance multiple times a day, being weighed at least 5 times a week, taking blood on a 12 hour schedule, dispite being anemic and god knows if you don't wake me up at 4 in the morning to take my vitals, I'll be dead with in half an hour. I hate hearing all this, but I need to know whats going on in my body, but when the information I need to know comes in the form of "you're gaining weight, but have you ever considered a feeding tube at night, or maybe if we gave you even more medication?" or "You're getting plenty of calcium in your blood, but you still have osteoperosis, by the way, you'll need an apointment (or a few) to see how bad it is" It almost gets to the point sometimes where you think, why bother, I'm falling apart already?! Now I live my life to the fullest, and I have a generally positive outlook, but it wouldn't hurt to stop the constant barrage of negative feed back we get from dr's...
