When you are person with Ehlers-Danlos Syndrome it isn’t that uncommon when you are in an appointment with a doctor to either have them say they have never heard of it or say “Oh yeah, I think I read about that in medical school once.” So, when you actually find a doctor that knows what you are talking about before you even go into your rehearsed explanations that you’ve had to use for decades, it is emotional. A doctor that not only believes every word you are saying but understands how it is to be you everyday. A doctor whom devotes so much of her time specifically researching your particular disease that appointments are a long time coming (and worth the wait.)
I had this appointment with Dr. Laura Pace at the University of Utah.
For people in the know I have been struggling with pain every time I eat for quite some time now. Also the digestive consequences of eating, i.e being very close to a bathroom. Which frankly sucks. I try really hard to keep a good attitude about it, knowing things could be so much worse. All you have to do is spend five minutes on the EDS Facebook page and whining about throwing away your underwear seems indulgent. So when my Mom was having an endoscopy and remarked during conversation that I had EDS to the nurse, Dr Pace came up as an imperative. Bingo-bango I called and I made an appointment. Yes, the wait was a bit. Meh, I’m used to waiting.
To say it was comforting to have someone on your side from jump-street is an understatement. There are many tests on the horizon and a new low histamine diet with no pressure to alter my veganism. They brought in a registered dietician to lay out the plan and explain the goals. I am excited to get started on this.
As I said there are going to be a bunch of tests in the future (mainly GI related) but on the way out of the hospital my Dad and I had to stop at the lab for my two pages of blood tests. The techs (yes it took a tag team) were speculating about why they needed to draw 37 vials from me. The main tech said “We were wondering if you were getting a transplant” or what. I told them about EDS and that I found a doc that studied it. The funniest part was when other techs would come over to check out the tray littered with all the vials. Some had to be put on ice, some hidden in gloves so they weren’t in the light. One tech stood there and kept saying “WOW.” The two techs did the math and said that my blood draw was basically half the amount of a blood donation. Makes me laugh.
I’m not expecting miracles. Never have. But it sure does feel nice knowing that she’s in my corner now.