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

Monday, June 14, 2010

Headaches

On Saturday I started having a really terrible headache. It made me nauseous and everything, just about the worst headache I've ever had. We called my surgeon's office to see if it was some sort of reaction from my medicine, or from the anesthetic during surgery. It turns out that I was getting too much medicine and that was causing the migraine. I decreased my medicine down from three pills to one and eventually started feeling better. By Sunday my headache was completely gone, and thank goodness for that!

As long as I don't have another headache like that I'm doing really well. My pain is manageable and I'm using the CPM machine as much as I can. I'm finding that the more I use it the better I feel. I use it almost every time I'm laying down because I find it more comfortable, and I always use it at night. I've even started to increase the amount it bends my hip, I'm up to 52 degrees now.

Somehow last night when I was sleeping I pulled my leg out of my CPM machine. I have no idea how I did this because my leg gets strapped into the machine when it's on. When I woke up my leg was out of the machine, but the straps were still buckled and everything which means I pulled my leg out with out undoing the straps... interesting.
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4 comments:

  1. AnonymousJune 14, 2010 at 1:47 PM

    Glad to hear you are working things out. I'm going to walk the 9 holes of golf I play in league tonight and dedicate every step to you. Thanks for the updates. Love, Uncle Gary and Aunt Barb

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  2. AnonymousJune 15, 2010 at 7:13 AM

    Well, this really cheers me up, Madeline. Plus I hear you're going to have a ramp soon so you can get outside. I hope today is even better for you. Lots of love, Sara

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  3. AnonymousJune 15, 2010 at 7:09 PM

    Sorry to hear about the headache, but glad to hear it went away. I get migraines, so I feel your pain!
    Also, sounds like you are a little Houdini! The mind is a powerful tool - especially while sleeping! :)
    Hey! I was just thinking ...did you get the photo I sent you?
    ~Mrs. B

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  4. AnonymousJune 15, 2010 at 7:27 PM

    cousin i love you n im happy everything seems to be going well. when i noticed you talking about how u pulled ur leg out without the straps coming off i remembered spending time at the cottage watching you twist yourself into unthinkable positions....(while sleeping).

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