Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: September 2009

I know it’s been a long long time since I posted. Things have been pretty hectic for me. All kinds of doctor’s appts and what not. I have hope, though, that they will be able to help me. I saw a fantastic Geneticist at Boston’s Brigham and Women’s. They set me up with a CTD savvy Physical Therapist. She is great. She understands that with EDS, I am not always able to do the exercises. She agreed with me that until I am in some sort of proper alignment and bracing, I shouldn’t do too much and gave me a few exercises to try. She also told me not to do them if I hurt. I am also seeing an EDS savvy Physiatrist in November to get evaluated for new braces. My current ones are either broken or dont fit properly. Also lined up is a Pain Specialist and a Neurologist. I’ve already seen a Cardiologist, GI Specialist, a Neuro (that was horrible), and I have a new Primary that is helping me set all this up. So far, I’ve had good experiences. All the doctors, except the neuro, had extensive knowledge of EDS and it was refreshing to not have to explain my condition to them all.

In the meantime, I am simply trying to deal with it all. I’m not walking very well lately. When I do I look like a Parkinson’s patient, I’m not joking or making fun, that’s really what I look like.

Right now I’m sitting in bed with my laptop (on a bed desk) with my soft neck brace on. I strained it somehow and considering the way it hurts, seems like I strained it from going to see Fame in the theater. Boo!

I’m trying to separate myself from my condition. As in thinking in terms of being a person with disabilities rather than a disabled person. I’ve been doing more creative things. I’ve gotten into beading, which is surprisingly easy on my hands! I’ve gotten back into art. I’ve joined an artists’ website WetCanvas and started to do the monthly challenges. I’ve only done one so far, but it was fun. You can see a picture of the drawing on my Art Blog . I have hopes of taking art classes next summer or fall. Here, we have the Rhode Island School of Design which is one of the biggest art schools in New England. They have a Continueing Ed program where you can get a Certificate in an area of art or design, e.i. drawing and painting, photography, fashion design, etc. The Certificate is kind of like a BA but without all the Liberal Arts and general courses require for a BA. I want to go for Drawing and Painting. I am really excited and have made this my goal.

I’ll try to keep this blog updated!


…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…