We finally found someone who actually cares about my quality of life. On Wednesday I saw a new rheumatologist who doesn't think that it is okay that I don't have energy to socialize or go to school full time or always hurt and feel like crap. He thinks that there should be something that encompasses all my issues not 5 million diagnosis; that chronic pain is bad and should be treated (not labeled as fibro and told to exercise and that it doesn't really exist); that prednisone is a quality of life drug and I should be allowed to have as much of it as I need to be comfortable; and that we should be worried about protecting my joints instead of waiting until they get bad enough to warrent surgical intervention. He is going to do research and talk to my other doctors, all in all we finally have someone who gives a damn about my quality of life.
Yesterday I had an EEG at Childrens and was forced to get only 4 hours of sleep the night before which meant going to bed at midnight and getting up at 4. I was surprised at how easy it was to get up in the morning and stay awake and fairly entertained until it was time to go to school. There was some sort of convention going on at the hospital, so all of the parking was taken by non-patients and all the patients had to use valet. So Mom dropped me off at the curb and went off to find a space while I got checked in. When I told them my name and appointment time they asked if "she(the patient) was with me" and were quite stunned when I said it was me. When they called me back the technologist seemed to want Mom to accompany me, but I declined. She treated me like a two-year old at first (which is weird because that usually doesn't happen at Children's) and ended every sentence with dear or sweety. She asked about my AFO's and I replied that I have EDS and she gave me a funny look, but didn't ask what is was or say anything about it.
As we progressed she started to treat me a little more like an adult and then proceded to complain about the arthritis in her back, how she got inflamation from the anti-inflamitories and couldn't take them any more, and then they gave her vicodin for it. She just rambled on and on about it and how much it sucks to be old and poor her and her arthritis. I really wanted to say, so what all my joints hurt all the time and will ALL have arthritis before I hit my thirties. It is ridiculously unprofessional to be compaining about your arthritis to kids who are in for EEGs and all the other stuff they see at Children's.