Madeline Sara: The real work begins

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

Wednesday, February 19, 2014

The real work begins

Last week I was in for PT for the first time since surgery. I basically just had an evaluation with my therapist to get an idea of how my activation was and what range of motion I had. As expected, my right leg is very atrophied, but I was still able to turn on everything well (I had been working on activation exercises pre-op). My right knee seems to be a little angry. We're optimistic that once I can get things moving and get some strength back it will settle down.

I started in the water the begging of this week. We'll just be easing into things to get my right leg back to working again. I think the pool is going to be really great and hopefully help me get stronger. Once I'm a little more confident in the water I'll plan to go to our indoor pool on my off days with PT.

As I've started more exercises I've been able to move around a lot easier at home. I'm able to use my SmartCrutches around the house. I can almost get dressed without help; getting that right sock on it's the real challenge. All in all, I am getting so much better each day. I have an appointment tomorrow with my surgeon for my 6 week visit. If everything goes well I will be able to start some weight-bearing!

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Up until September of 2006 I was a tenacious soccer player. In a league game I remember racing to the ball as my opponent pursued me. I beat her to the ball, planted my foot and cleared it. As I cleared the ball my knee dislocated. Searing pain engulfed me. I remember my coach carrying me off the field. Little did I know how much my life had just changed.

I was diagnosed with a rare, incurable connective tissue disorder, Ehlers-Danlos Syndrome, which meant that I had to quit soccer. For me, this was extremely difficult. Soccer had always been something I defined myself by, having to throw that all away was not easy. Since then I have seen over thirty physicians, spent countless hours at physical therapy, have had a smorgasbord of medical tests, and a number of surgeries.

My disorder has been extremely life changing. Not only has it ended my soccer career, but it leaves me challenged on a daily basis. In the beginning this was a life change I wasn’t ready to accept and on many occasions it tore me apart. I did not want to live my life as a fractured person. This was not going to just disappear over night nor was it something that I could cry away. This was something that was out of my control and I couldn’t do anything about it. I realized though, that there was something I could do. I had the power to decide how to let it change my life. Right then I had a decision to make, and I had total control over it. This could ruin my life and destroy me, or it could become a positive experience for me and make me grow as a person.

I chose to take control. Here I am now, a few years later and I am very happy with my decision. I can genuinely say I am thankful for what I have been though and all the medical procedures that I have overcome. Because of this I am a stronger person. Because of this I know who I am and who I want to be. And, because of this I have grown up.

Orthopedic Surgeries

June 05- Bilateral Removal of Accessory Navicular Bone (Foot)

January 08- Left Knee Reconstruction (tightening of the patella tendon, MPFL, and surrounding tissue)

October 08-Right Knee Reconstruction (identical to left knee reconstruction)

December 09- Left Knee Re-Reconstruction (patella osteotomy, moving patella tendon to adjust the q-angle, replacement of MPFL with cadaver ligament, and tightening of surrounding tissue)

June 10- Right Hip Scope

June 10 (2 weeks after scope)- Right Hip Open

December 10- Left Hip Z-Plasty & Scope

February 11- Right Knee Re-Reconstruction (identical to left knee re-reconstruction in 09)