For those of you who have helped me along the way since I have joined this summer, may remember my journey thus far. I leave Sunday to have my initial appointment, or assessment or something, with the Lupus Clinic in Montreal.
I am feeling so scared right now. I am on the verge of cancelling
Why am I scared? I know I have DLE, I know my blood work doesn't show SLE. I know something is wrong in my body and it's systems. I know I have been having doors shut on me. I have lost faith in doctors and I also know that I shouldn't feel this way. I should be positive, optimistic, I've waited for this appointment, this opportunity and I know I need to follow through but I am super duper scared.
Yes my DLE is out of control, but it always been. The only time I have not constantly scratched my head or wince in pain was when I was on Prednisone. It was glorious! Most of my unexplained symptoms were alleviated.
Wonderful! Kind of. The medication helped, absolutely! But I don't want to take a pill and not know why (besides my discoid). And I am frightened that because of I have seen the before, during and after of the using prednisolone, I might be given a script for it and sent along the way.
I want answers. I don't simply want a pill. I want knowledge, know how, do's and don'ts, affirmation and a possible type of future outlook.
I am very mild with my symptoms but they are there, the wax and wane, paralyze at times and remain constant with others. But they are there...when not on the miracle pill (as I call it).
I am scared I will get brushed off, dismisses, or deferred to someone else who closes their door on me...like a few others before.
I scared. I'm tired of this. I need some encouragement please?