My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Sunday, June 26, 2011

Vertebras, Echos, Birthdays & Such.

Needless to say, I've been pretty busy lately. So there's a lot to update on this past month.

I graduated. I had an echocardiogram. I was diagnosed with high blood pressure. I (and when I say I, I mean my doctor) discovered I have a sixth lower lumbar vertebrae. And, I celebrated my birthday.

Let's start vascularly. A couple months ago I went to a regular doctor's appointment and noticed that my blood pressure was a little high (140/90- Normal for me should be about 115/70). My EDS specialist said to track it over a month and check in with my primary care doctor. So I did just that, and my bloop pressure (BP) stayed pretty consistently high. She was concerned with the numbers and the chest pain I presented with so she sent me to a nephrologist (kidney doctor- they see all blood pressure issues because most of the time high BP is related to the kidneys, unless it's thought to be genetic). He agreed that we needed to get my BP readings lower, so he put me on a diuretic (water pill) to try to lower it. His diagnosis is that it is genetic and that this will help lower my pressure, but if over this next month my BP doesn't go down then it is most likely kidney related and we'll investigate that with some kidney tests. I've been having some unusual chest pain, but he said to just watch it and if it changes we'll look into that more as well.

After I saw him I had an echocardiogram (echo- special ultrasound of the heart) just to make sure there wasn't something else going on. Everything was normal. I do have minor regurgitation in one valve, but that is completely common and there isn't anything we need to do about that.

Now, onto the back. My PT wanted me to see someone and have x-rays for my back to make sure there wasn't something else going on, he was a little concerned I was going to get a stress fracture. So, I saw one of my sports medicine doctors who looked at my back and agreed that it was just SI joint pain, which there isn't a whole lot of treatment for. But, he also wanted to get x-rays just to cover everything.

After looking at my x-rays for quite some time in the hallway, he came into the room with a slightly puzzled and surprised look on his face. Apparently I have an extra lower lumbar vertebrae. Now, this was slightly comical for us because he is the same doctor who discovered I had an extra navicular bone in my foot several years ago which was resulting in severe foot pain and I later had to have removed.

Anyway, he thinks that the extra vertebrae is probably contributing to my back pain, but not the main culprit. So, back to more PT I go to strengthen my core to take some of the work load off of my back and hopefully be able to relieve some of my back pain.