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

Tuesday, June 8, 2010

Ready To Go!

I'm all done with school, so now I'm full force ready for surgery.

Insurance issues are all resolved, thank goodness.

I've got almost everything moved downstairs, for the scope. I'm planning on being about to go upstairs by about day 3 after my scope. The scope isn't going to be a big deal whatsoever, so I'm not worried about stairs with that. However, for the osteotomy /z-plastia I'm planning on not being able to go upstairs for 6 weeks or so. Being 100% non-weight bearing and plus having an already unstable "good" hip, I just feel like is setting myself up for disaster to try to tackle stairs. I'm trying to avoid making this harder, and I can't even begin to imagine if I dislocated my left hip while having the right recover, so I’m just going to stay away from the stairs.

My aunt is coming to stay with me after my scope because my brother is graduating in Cinci. I’m sad I can’t see him graduate, but I'm looking forward to seeing my aunt and it will add some fun to recovering.

I’m getting things set up to be able to have a hospital bed at home. I’m not going to have it here for the scope, but defiantly for the osteotomy/ z-plastia. After the second surgery I won’t be able to sit down anywhere low, the couch is even going to be too low, so the hospital bed will pretty much be my only option. There are some hospital recliners that I could get, but I haven’t decided weather or not I’m going to get that. I’ll get ramps installed so that I can go inside and outside by myself. For my last surgery when I was in a wheel chair my dad would pick the wheelchair up over the step, in and out of the house. Let me tell you that was nerve racking! I’m also getting a tray for my wheelchair and hopefully a bed try because I won’t want to or be able to put anything on my lap.

I have a few extra things to do around the house, but for the most part everything is set to go. I’m going to enjoy my next two days of summer while I can still move around freely.

:)

4 comments:

  1. gooood luck madeline! i love you, and this is a lovely blog you have! :) you are one of the strongest people i know, surgery is going to go great! Much love, Linda!

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  2. Woo hoo! You go, girl...we're all praying for you and cheering you on!

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  3. Best of luck. We're starting a pool for how many days before your back on your feet. Anybody else want to get in on this action? Uncle Gary has two days, I'm giving you four days. (Uncle Gary does not want to lose.) Thanks for keeping us updated. Love, Uncle G. and Aunt B.

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  4. Madeline, I'm thinking of you tonight before your surgery, and I'm glad to know you are so filled with positive thoughts. I cannot wait to see you on Friday because #1: your scope will be over and #2: I get to spend some quality time with you!! Thanks for the blog, dearie. Lots of love and a big hug, Sara

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