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joy

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About joy

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  1. Good for you for taking initiative! I bet this rehab will be so beneficial to you. Therapy is hard but its also so fulfilling. Just go in with that I CAN DO IT! attitude and you'll be amazed at what you can do!
  2. Collapses are a big part of my life, and I just try to be consciencious of my surroundings and how I'm feeling. I'm known for being good at falling haha, and while its no fun there are ways to make yourself as safe as possible. stay close to walls when feeling sick and take it methodically. don't be afraid to take somebody's arm, and sit when you need to. lying down definitely helps, but the more you lie down the less your body adjusts. I'im strugglign thru this now
  3. I have, and mine too is left sided. Had MRI but without contrast, that makes me nervous. let us know how your scans come out
  4. I was told to expect it to take up to age 25 to recover
  5. ^Good way of wording it on your doc's part! I'm doing a bit better already I think. When I was in they wouldn't let me get up on my own either, and that sure didn't help my state! to them a fall risk bracelet=made of glass lol. and PT and OT is SO worth it, I've done over a month of full day therapy and lots of several time a week to once a week for months before and after
  6. all this is super encouraging to me. it made sense when they told me that, but i definitely wanted all your input!
  7. I do physical and occupational therapy for my reflex neurovascular dystrophy. today I went into the hospital for my first appointment in awhile, and once there Iw as forced to do way more than I was comfortable with. and was told that the more I am up and not lying down things SHOULD improve in the long run. though it might be the VERY long run. I definitely agree that by lying down i'll just continue to degenerate physically and my body will adjust less and less to being vertical. but its SO HARD I just feel like collapsing. after being up for so long my mom and a friend at the hospital ha
  8. That is a lot to deal with! I also get the tender scalp deal, is that dysautonomia related I wonder?
  9. well it's a new day. I think I'm learning to adjust to a point, but I still am unable to do any school and getting out of the house those two short times this weekend took its toll on me. Still worth it though.
  10. I propped back at the table to get my BP up best I could. and by the end of the night people were holding me up and I was carried to the car haha. should've used a wheelchair. I'm paying for it now and doing all the worse, but at least I'm to the point where I can sit up for longer periods of time. I hope its going to start improving. Last week I could hardly walk at all.
  11. Let's just chat about how we cope on a day to day basis! Post what you were able to do today if you like and share anything you wish to! Friday I went out with a good friend who took care of me at the hospital when I was getting my therapy for RND. My boyfriend came and the two of them got along haha. I was pretty exhausted by the end of the night, she was holding me up when we went to leave but it was so worth it, managed to titl back in my chair and brace my feet off the booth so I wasn't so upright and lasted for over an hour Yesterday went out to eat with my boyfriend, no clue how i made i
  12. so glad to hear that you are feeling better! hugs! when are you expected to be discharged?
  13. I would get that checked out, orange is not a good color.
  14. joy

    Choir

    ^lol I'm a soprano.... Was an alto for years but voice changed several years ago. I happen to love it, though alto harmony is fun as well
  15. joy

    Choir

    ^Thank you for your kind words! I pray it is always something I'm able to make happen. At this point I'd probably have to sit or lean on somebody/the wall for a concert. but earlier in the year I wasn't doing too badly and stood for the entire thing!! my director kept winking at me she was so excited. My RND had taken away much of my ability to walk and I was almost done with my intensive therapy for my PT and OT so everyone was floored and excited to see me standing. which was special
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