I feel like I could ramble on for a blog the size of an encyclopedia but I won't do that to the readers that are patient with my EDS ramblings. Instead of trying to fill in details, I'll just straight to the glorious day I met Dr. Mark Lavallee!
I was so nervous but excited. I felt like I was going on a first date as I was getting ready for my appointment. I didn't have much time, Andy was in the Philippines for 2 weeks and this just so happened to take place during his trip. So, I didn't just have to get myself ready, I had to get the kids ready and to school as well. So, I walked into the office and got registered, the receptionist was Rose Marie and she was great! Less than 10 minutes after my arrival a nurse named Josh came and asked me to come to the back with him. On the way back I reminded him that we spoke on the phone a few weeks ago and he reminded me that I have a rather unforgettable southern drawl that is recognized very easily. Josh took me into the room and we talked alot about my medical history and such then he took my vitals. He was very nice and I enjoyed talking with him, I was very at ease so far. When Josh left the room I got butterflies galore. I started to look around the room in awe at all of the pictures of Dr. Lavallee with athletes he'd helped "restore". To my left, there was a letter that a little girl, a gymnast wrote him, along with it there was a photo. In her letter she thanked Dr. Lavalle for helping her heal her injury which allowed her to continue in her gymnastics. That is when I lost it, I cried like a baby and I could not stop. Well, not until I heard a knock on the door.
"KNOCK KNOCK, DOC DOC" were the words that landed humorously on my ears. "OH GOD I AM CRYING". As Papa would say "I dried it up, quick, fast and in a hurry", muttered a happy "Come in" and the next thing I knew I was eye to eye with Dr. Lavallee. I wanted to hug him and we'd hardly spoken 3 words. Dr. Lavallee asked me some pretty open-ended questions that I loved answering, kinda just telling him what had been going on with me. From those, he started to ask more direct questions that I was so happy to answer. Something very odd about those questions, it seemed like he was asking the questions because he'd read a book about me and my life and wanted to know more and understand better. There were so many times that I fought tears...I mean I fought them like Samson fought Goliath, I didn't want to cry in front of this man! Inside I was bouncing like Tigger, a very bouncy tigger that had just had his first Red Bull! Dr. Lavallee did the Beighton Scale Test on me....9/9, ofcourse, I would have been a 14 if it went that high! He examined my hypermobile joints and I knew that Dr. Straniero was right when he said "Dr. Lavallee will be impressed and he's not impressed very often". I even did my "circus tricks" for Dr. Lavallee and he didn't yell at me. Dr. Lavallee seemed to have so many answers! I wanted to do cartwheels!
Dr. Lavallee was actually giving me answers to questions that I'd struggled with for so long. My mind was swirling like a tumbleweed in a windstorm! Wow! The headaches could be explained, the backaches, the excruciating knee pain and even the fatigue. Geeez, then he told my why my legs look like a purple polka-dotted popsicle at times and told me he was referring me to a cardiologist that he works closely with. He knew about my dizziness, nausea and everything else I told him about. The things that he didn't know as much about as he would have liked to, he referred me to someone that would...Like Dr. Haleran. He explained that he could relate to what I was experiencing and told me a little about his battle with Ehlers Danlos.
This man is a miracle y'all. God picked the perfect person when he picked Mark Lavallee to have Ehlers Danlos Syndrome. Ya wanna talk about inspiration, he'll give you a double-dose every time you talk with him. He is so determined to beat down EDS and if you can talk with him and not feel the same way, you're slam retarded! He works daily at beating this disease! He may do research and of course he helps EDS patients, but that's not what I am referring to. Dr. Lavallee works out in the gym regularly, it's as much a part of his life as eating and sleeping.
Dr. Lavallee looked at me and said "there is no magic pill I can give you, I can't fix this for you but you can!" At this point I wanted to get up and dance! He explained to me that doing gymnastics for so long built great muscle mass that had stabilized my joints for so long. The key to beating this disease is to get that muscle mass back. Since my ligaments and tendons don't "support" and protect my joints, I have to rely on my muscles to do that job. He explained that the first weeks of Physical Therapy and working in the gym would be very very painful but stressed the importance of hanging in there. I felt like Dr. Lavallee was giving me the tools to be successful in beating EDS. What an amazing feeling! He also explained to me that in a year of utilizing these awesome tools and his guidance that I would be a new person...Right down to my ADD being better! I never realized that pain is distracting...now I think about it and think "DUH Ila, come on girl!"
Dr. Lavallee walked me through the "plan" and told me to call him if I needed him. At first I thought "why in the world isn't he making me a follow-up appointment?" Now I know it's because there was no doubt in his mind that he'd hear from me on a regular basis! :O) At one point I think if I'd been him I would have been so frustrated at me, he may have been but never showed it! I swear, every time I started to walk out the door, I'd think of "one more question", I must have said "oh and one more thing" 10 times (that's a conservative number). That man must have the patience of Job because he answered every question as if it were my first. I can't explain to you the excitement I felt in talking to him. I take Adderall for my ADD and I was so bouncy and giddy that when I got home I checked to see if I accidentally took 2 that day....I didn't! I felt like I could have jumped over the moon or like Tigger on Red Bull. I felt that good that someone actually understood, not just medically but personally....Dr. Lavallee KNEW and that my friends is a MIRACLE!!!!
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