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, October 27, 2013

Time for a Tune Up

Attending a holistic nursing school we are always taught to center ourselves and to take care of ourselves first, as nurses. If we are able to do that, we will be better nurses for our patients. Being a busy working college student, it can be challenging to take that advise sometimes. As the leaves are changing not only literally, but figuratively, it's time to take that advise seriously. 

As an EDS patient it can be very easy to ignore pain, especially when you are accustomed to living with a certain level of discomfort. It can sometimes be hard to tell if there is something really going on, or if it is just the normal discomforts of EDS. It can be a bit of a catch 22 sometimes. I work really hard to not allow EDS to take me down or control me. But, I am also conscious of the fact that I have put a lot of work into my body, allowing me to be where I am today, so I want to protect it and all that hard work. 

It's time to for a tune up with a couple of my favorite specialists. 

The first on the list; my right hip. This is the first hip that was operated (scope & Z-plasty of the IT Band) on. I've been having ongoing issues with my SI Joint for a very long time now. It will usually come and go for long periods of time. It's been back recently and more uncomfortable than ever. I've discussed before wether this is related to my hips or a completely separate occurrence, no one really knows. I have an appointment scheduled for next month with my hip specialist to hopefully develop a plan to gain some relief and get a better idea of what's going on. I also want confirmation that my Z-Plasty is still holding up, because my hips are been a little more mobile then they should be recently. 

I say this every time, and I'll say it again. Even with these mild issues, I am forever grateful for how together I am today. I don't think anyone would have predicted this success several years ago, and if they would have, I certainly wouldn't have believed them. EDS continues to teach me so many things not only about myself, but about everyone else as well. 

A scar does not form on the dying. A scar means, I survived.