You sound alot like me-angry. I don't know what's worse, this crappy disease, or Dr's and Rheumo's who could care less. I almost have more respect for Lupus, at least I know what it's motive is-it wants to kill me.
We all have our own ways, and reasons for why we cope. For me, I managed to survive some situations earlier in my life where survival was nearly impossible. I didn't get through those situations just to give up now to Lupus. This disease has taken so much from me, I'll be damned if I let it take the grand prize-my life. Not going to happen.
I understand your anger, your frustration. Your username says alot. You feel like you are screaming at the top of your lungs, but nobody is listening. I feel that way alot. Sometimes, there's just nothing positive to say, but you shouldn't let that stop you from saying what you need to.