Madeline Sara: Getting Ready

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

Saturday, February 12, 2011

Getting Ready

I am pretty much ready to go for surgery. I have everything moved downstairs for surgery. My dad just moved my bed down this morning (I'll stay downstairs for 4-6 weeks). I finished getting all the little random things I needed. My bag is packed for Cleveland (that's where my surgery is going to be).

I'm looking forward to spending the rest of my day with my friends and having some fun before I leave (we're going up to Cleveland Sunday evening).

Right now the post-op plan is to go back to a hotel in Cleveland Monday night and stay there until Wednesday. My surgery is being done at an outpatient center so I can't be admitted, we'll see how that goes. If my pain can't be controlled and I'm having problems, then I'll be transported to main campus and admitted there. Hopefully I'll be comfortable enough to not need to be admitted.

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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)

Madeline Sara

My Journey with Ehlers-Danlos Syndrome

Saturday, February 12, 2011

Getting Ready

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