Since My Appointment

Since my appointment with Dr. Lavalle a couple of weeks ago my emotions have been a roller coaster. I have tried to collect medical records from years past, not only mine but those of my mother and paternal uncle as well. My mother died when I was 13. She was a nurse and had hepatitis. I always assumed and was told that hepatitis was how she died, but who knows, Papa went to check on her at her house one morning and found her dead. I all of a sudden started to consider the fact that maybe she had Vascular Ehlers-Danlos and that was what led to her death. I haven't found any medical info of hers yet but I will keep looking as time allows. My paternal Uncle died of a heart attack the day before he turned 31. I never knew him, not only was it before I was born, it was on my "fathers" side of the family. If you remember from previous posts, my Mother was not married when she had me and my Grandparents, Mama and Papa, adopted me when I was born. I met my "Father" when I was 16. Well, I got in touch with my "Uncle's" wife and talked with her about Donald's death. She gave me the information from the coroner's report and autopsy, his death was due to a weak pericardial muscle. Whew, that was good news, nothing was documented that even suggested an aneurysm or dissection. 
I don't know what happened to me in the past few days, I seem to be having a hard time "wrapping my head around" the fact that I have a rare disease that there is no cure for. This is me, the lady that was ecstatic when the doctor told me that there "is no magic pill" and that he could not fix me but that I can "fix" myself. I bounced around for 2 weeks singing "If it is to be, it is up to me!" What happened? I think reality is starting to set in. Now I am thinking, "Oh wow! I can't believe this! I knew something was very wrong but I never imagined it was Ehlers-Danlos, POTS and Lupus!" My "fix" is physical therapy and lots of time in the gym. Now since I stopped gymnastics, my time in the gym was spent walking through to go to the sauna or maybe riding a bike for a few minutes. Big changes are taking place in my life and they are life-long changes! I am excited about these changes but man oh man, I am overwhelmed as well!