So, the wait was on, I was waiting for Dr. Lavallee's staff to call and set up an appointment for me to see him. They called in January, I'll never forget that day. We were in Memphis for Andy's best friends wedding, that would make it mid-December that they called. I was so disappointed when they set my appointment for April. I remember thinking "I don't want to wait until April to have answers". Well, I decided that I had to be patient! The Heinz commercial used to say "The best things come to those who wait"! In February as I was filling out paperwork for Dr. Lavallee, I called to ask a question. I spoke with his nurse Josh and he told me that I could actually come in the second week of March, I was so excited!
I was (am) so sick of calling my best friend, Valerie, and her husband Matt and asking questions about what they "think" might be wrong with me. The past few years have been filled with countless phone calls that many times consisted of nothing more than questions like "do you think this is normal?" and "How do you feel when you wake up in the mornings?" You know, probably the normal questions that people that know something is wrong but don't know what ask. Valerie, like me, has a degree in Biology and Chemisty (but she's a heck of a lot smarter) and Matt, her husband is a nurse. Matt's not just any nurse, he's one of the super nerds that we all hate! You know, they read something one time or just merely sleep on the book and retain all of the information for their entire lives. When Dr. Straniero mentioned EDS to me that day in his office, I called Val and Matt and they immediately started to research. When Val called me back she was blown away "Ila, this explains you to a T, I think they wrote this description about you". That's when I kinda "knew" I had EDS, yet, I had no clue.
My life is a very interesting one, people that don't know me or my family situation, those outsiders looking in, may call it dysfunctional...I call it BLESSED! I'll expound on this on my next blog, it is very interesting, so don't miss it!
The reason I bring up my "life" as being very interesting is because I believe that God puts people into our lives for reasons that we can't even imagine. I met my biological father when I was 16. My maternal grandparents adopted me at birth, I didn't meet my "father" to find a Daddy, I already had the best Daddy in the world, I called him "Papa". I have always been a curious person, I like to know the answers and I love to investigate to find them. Research is on the top of my list as things I love to do! Well, we found my "father" and I met him the day after Thanksgiving in 1992. He is an interesting fellow to say the least and until this day I have very little contact with him. When I met my father, I didn't necessarily fall in love with him but I instantly fell in love with my "Stepmother" and with my 1/2 brother. My Stepmother's name is Betsy and we just had a "click" from the second we met. I always tried to visit Gerald (my father) when I knew Betsy would be there. Betsy is a Doctor, so she was often on call or busy with patients. In 2000 I called and talked to Betsy one night and she told me that she divorced Gerald and I was so sad....I didn't want to loose Betsy, I loved her more than I ever even let her know.
Well, about 2002 I would call Gerald and ask him how I could possibly get in touch with Betsy and he never cared to share that information. He was to busy bad-mouthing her and talking about how crazy she was. I looked and looked and we moved to Europe for 4 years in 2005, I just gave up. When we got back I asked him again and he said she was in Washington State, I scoured Washington State and no Betsy. Well, one night a few months ago, I was playing on Facebook, where I had looked numerous times before and I found her. I sent an email, realized before she even got that email that she was still in Florida and I could not help but let my fingers do the walking. I called Betsy with tears streaming down my little face, I just could not hold back the emotion. When she answered and heard that it was me, I think she felt the same way. That night we talked for hours, catching up and just being giddy that we were on the phone together! Toward the end of our conversation Betsy mentioned that she lives in excruciating pain and I said "Betsy, what in the world?" I about wet my pants when she said "I have Ehlers Danlos"! I squealed "I do too!!!!" and she whispered a calm "I know". "You what???" I asked! She told me that she was 99% sure I had EDS the day we met and my father and I excitedly shared our "circus tricks" that we could both do because of hyper-mobility. Gerald has EDS as well but his is asymptomatic, lucky man! So, Betsy and I talked about EDS for a long time....She talked, I listened! Betsy is an incredibly intelligent woman and compassionate Doctor. I was just so thankful that I had someone that I love so much that could relate to me and me to her.
Even talking to Betsy and hearing her tell her EDS stories and experiences did not prepare me for what I was about to learn.
To Be Continued in #3.....
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