Why I am back after so long...

I stopped blogging because I was overwhelmed with the fact that I have EDS. In the past few months, I have overcome that. I have decided that I don't have a disease, just a little disorder. I am still determined that I won't let it define me, I will define it. 

A couple of weeks ago I got to talk to my EDS Specialist, Dr. Mark Lavallee for a long time.  We talked "doctorly" stuff and then we talked friend stuff. We talked and talked and talked, it was great and perfect timing, I had a really rough week. Talking to Mark made my month. If you don't know Dr. Mark Lavallee personally or as a Doctor, it's hard to fathom why we ALL love him so much. I know him, admire him and love him and everyone I know that knows him feels the same way. I think we all agree that Mark is an Angel that God put on Earth. I've never known another single person that has inspired so many (literally, many THOUSANDS) of people so immensely. 

After Mark and I talked I thought about blogging again but didn't. Then tonight I saw a post from the mother of one of my Ehlers Danlos friends and I knew I had to start blogging again. My post from earlier has a bit about Emily and her story. It also has a little "story" about my friend Amanda, she passed away in December from Vascular EDS. 


I decided to start blogging again for numerous reasons: *My friend Katie said I should! *Some of my greatest inspiration comes from some of the blogs I have read. *I need a way to "get it out" and talk about it without bombarding my closest friends! *My biggest goal for EDS is AWARENESS and Education, blogging raises awareness and offers education to others. *I want my friends and family to have a general idea of what is going on with me "health-wise", then I don't have to explain it 500 times. 


So, here we go again!


Gentle Hugs!
Ila

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!