…but having a hard time. I’ve been very fatigued lately and haven’t been posting much on anything lately. There are some updates on my Youtube channel, but I’ve been getting behind on those as well. I apologise. I apologise even more for not keeping up with everyone else’s blogs.
Long story short… I saw the Genetics team at Brigham and Womens Hospital in Boston. It’s the Genetic Cardiovascular Center. They are setting me up with a physiatrist to do a full evaluation and figure out some new bracing. Right now all of my braces are either broken or don’t fit. My left leg is rotating severely inward and I don’t know if there’s much that can be done. My right leg is rotating also, but not so bad… there may still be hope for that one. Unfortunately that appt isn’t until november, same with the pain management doctor.
I am seeing a new primary who is fantastic and she is setting me up with all kinds of specialists: the pain dr, cardiologist, dermatologist (I have developed a grainy rash on my chest and cheek), GI, and Neurologist. She is also helping me with my pain and meds. She is really thorough and listens and speaks to me like I am an actual PERSON. Who knew?
Today what a really bad day for me. I was very fatigued and foggy. I saw the Neurologist, and to be completely honest, I barely remember it. I got very confused when he asked me questions. I wanted Neil to be in there with me because we had gone over the “list” in the car. I remember mentioning the numbness in my legs, the nerve pain, SPD and my legs going out from under me. We talked a bit about my dysautonomia and whether or not I am on medication to keep my BP up. I am not, and he seemed baffled that I wasn’t. He pretty much summed everything up to the EDS and Dysautonomia-DUH!!! The concern is nerve damage… anyway, he is going to send me for some MRIs and talk to my primary…