Wow, I'm not so sure being told you are too sick to qualify for a government study is a good thing! Except I know that they are trying to see if a specific drug will work and they don't want people who are too sick messing up their data! Geez, if that doesn't make you feel bad I don't know what will. I'm sorry Ms. Smith, you are just too sick for our study, we only want people who will show improvement, not that the meds don't work. Sorry but you are out of luck. My feelings would have been hurt if I hadn't already heard this. My pulmonologist had me get in contact with one of the top doctors in sarcoidosis and after reviewing my records, he also said that there was nothing else to offer me that I had not tried or was unable to try due to my cancer. Today I take this news in stride, but on days when I am struggling to make all this make sense, I am very frustrated with the inter-connectings of my diseases.
One of the women who post on a support board did get into the program and recently posted how nice it was to have the doctors and staff saying some of the things we patients have known and felt. Like this disease is very bad and since doctors don't know much about it they minimize it. If I ever needed proof of this all I have to do is remember my first rheumatologist upon hearing of my pain and fatigue complaints said all I need is a good pair of shoes!? Another thing she said they mentioned that even though the disease may seem to be in remission it is still there and will come back stronger. It can affect everything in our body and we need to know exactly what areas it's affecting, and things change daily. Hopefully some good things will come out of this study. We could really use some new medication options.
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