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, January 23, 2011

Some Not So Great News...

On Friday I went to PT and had a little knee incident, I subluxed my right knee.

I was getting ready to do an exercise on the BOSU (one side is a hard flat surface and you balance with the other side, half ball part on the ground) and my therapist was standing right in front of me. I was moving my right leg out so that I was shoulder width apart, and between moving my right leg and setting it down on the BOSU, my right knee subluxed.

Right away, I knew it wasn't a good sign and I knew that my right knee wasn't as tight as it was a year ago but I still wasn't expecting it to sublux right then. My therapist examined my knee and my patella was significantly looser than it was when I woke up that morning, not a good sign. He went to go see if my knee surgeon (he's in the same building as PT) was still in his office so that he could check my knee and decide where we should go from there. He wasn't in so I'm going to get an appointment with him as soon as possible, most likely this coming week.

Unfortunately if I have to have surgery I will probably have to go to Cleveland (where I had my most recent knee surgery, left knee). Since I have reoccuring patella instability the knee surgeron in my area (who did my first 2 knee surgeries, left and right side) hasn't felt comfortable doing the surgery that I need to re-stabilize my knee when the first surgeries he did didn't hold.

I dread having to have surgery, let alone having to have surgery in a different city but I have to do what I have to do and it's better to get it over with now than to have to deal with it down the road.

1 comment:

  1. Madeline - This is a set back to your amazing forward momentum, but I guess that's another part of the journey. Reminds me of the prayer - “God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that can be changed, and the wisdom to distinguish one from the other”. This knee is just one of the things that is what it is. And you know there is always a silver lining - now that you know you need a knee tune up, you can plan for it and fit it into your busy life. Also, now you know everything to you need to know to have a better experience in Cleveland. I hope it helps in some little way to know how many people love you and are pulling for you with all their might - I'm one of them! Hang in there sweet girl. This too shall pass. Big hug, Sara

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