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My first week sitting up in over 6months!

August 10, 2010, 1:55 pm
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Sitting up June 12th 09 We thought i was on the road to recovery, i was finally sitting up after so many attempts with medications and diets and shots and everything. During those 6months life went on, but i stayed behind. Holidays and school passed by me, my brother started high school without me there as i had promised i would be there, he had his first wrestling matches, my older brother graduated college, and i was webcammed in here and there when i was able to and well enough. But i did not let it stop me. I had the hairdresser come to the house and cut my hair with me laying flat in bed(we had to roll me over to make sure we were straight lol and mom did the pre-wash off the edge of the bed). I kept in contact with people through the computer as talking took a lot out of me. I did PT from home starting out bed bound and ending sitting up. I made days where i did things for myself, i made goals even if they were small. I kept moving and so this video was a huge deal for us.

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8 Comments

  1. ufo8mykat says:
    December 1, 2009 at 7:53 pm

    You are amazing, good job!

  2. engodo2525 says:
    December 2, 2009 at 4:23 am

    @ufo8mykat

    Lol wish i could give myself more credit for the whole sittiing thing. All i did was do the research and tell the doc what med to use after 6months of him trying other stuff lol. Im not one to lay around and do nothing; so i research.

  3. engodo2525 says:
    December 2, 2009 at 4:25 am

    @BuddyBoy091994
    I know lol. We were really excited. Sorta had a field day well a house day. but that week i was going around the house in my manual chair pushing it with my arms or legs just going down the hall and into the living room and making a few spins til mom said stop lol. It was great though. Will be again; but fun times.

  4. ufo8mykat says:
    December 2, 2009 at 8:24 am

    Taking responsibility for how you feel and doing the homework to help your doctor is exactly what I’d like to see other EDSers doing. It’s YOUR life, and you’re doing great! Long way to go, so saddle up, and keep lots of friends to share your way. :)

  5. BuddyBoy091994 says:
    December 2, 2009 at 4:13 pm

    thats cool lisa :)

  6. engodo2525 says:
    December 3, 2009 at 12:05 am

    Lol i would saddle up cause i do have the equipment to cover myself head to toe no joke; have to get that video up, but it takes forever to get out of it all lol. I have a bilateral handmade HKAFO(hip knee ankle foot orthosis) that meets up with my CTO jacket just perfect add my wrist braces, forearm crutches, ace the elbows cause i never have luck with elbow braces just half casts, and im head to toe lol.
    As for responsibility i feel its your first priority to stay healthy. so i try.

  7. engodo2525 says:
    December 3, 2009 at 12:08 am

    Ya my PT was a tad freaked lol well so was mom cause i was just so excited i would not sit in my chair in one spot(i use my motorized chair full time but the beep it makes to turn on/off was causing convulsions so i had to go back to manual until i got the noise issues lowered a bit). But ya i learned how to push my manual with my toes and then steer it with my feet(just wear good shoes and stick your foot into the little front wheel you can then override the driver of the chair).

  8. engodo2525 says:
    December 3, 2009 at 12:10 am

    In my case i use it most when its a big distance, give a good push on a good surface or going downhill then steer with feet, break with the hand breaks not grabbing the wheel. Took myself down a steep slope in the parking lot of ronald mcdonald house long island with like 2inch clearance on both sides from cars, all by feet steering(you turn hard enough with the front wheel you end up going a 90degree turn which slows/stops you) saves the arms not a lot of leg work either!

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