My visit today did not provide any surprises. I did my homework ahead of time and made sure that I not only knew as much as possible about Ehlers-Danlos but I also looked into what was available at both Dartmouth-Hitchcock and Mass General. My family physician asked me about my sister, my own flexibility, and my current thoughts. He stated that he did not know much about the syndrome and would have to research it - so I mentioned that Medical Genetics at Dartmouth-Hitchcock (DHMC) states on their website that they provide services for Ehlers-Danlos. He replied that it would make more sense to refer me to them. Now I am awaiting a phone confirmation of my initial appointment.
I am more than a little nervous. Forget the potentials of testing results; I dread car rides. It will be about a 2 hour drive each way, and I find that a half-hour drive to work can sometimes leave me sore. It is amazing how the winter affects my joints; it leaves me sounding like a batch of popcorn and feeling like I've enjoyed an afternoon of soccer when all I've done is get out of bed and walk downstairs. Tree has offered to drive me, but the initial testing will be just on me and it makes more sense for him to stay with the girls. If/When the girls are involved I will definitely take him up on that offer; I can move around more as a passenger than as the driver and will want him fully involved in any decisions made concerning them.