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Thread: I'm screwed

  1. #1
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    Default I'm screwed

    i don't know where 2 begin! I might just need 2 vent.

    i have lupus and polymyositis. i'm using a wheelchair now(i'm 32). i had 2 by a minvan 2 accomodate the chair. but the problem is i can't half get in the thing when it's on the surface. when it's parked next 2 the curb i don't have any problems. i'm getting a running board put on 2 try 2 make it a little easier. but i suffer from severe muscle weakness and even that isn't gonna help.

    nextly people want 2 go out with me now that i'm supposedly more mobile but with what i just said i feel trapped and screwed. the very things meant 2 put me back out in society seem like they came with a catch-22.

    i feel like d*mn if i do and d*mn if i don't. everybody has been encouraging me and trying 2 get me 2 do more but truthfully I'M SCARED. i've been disconnected 4 so long i feel like a fish out of water. i don't like being around anybody when i go out except my kids or my mother. i feel like i'm slowing them down. nobody complains.

    i'm not necessarily looking 4 responses, i just needed 2 get it out and this is the only place i can.

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hi CNLB2005 :lol:
    Well, you've come to the right place if you just need to vent. I can feel your fear and frustration in your words. I understand, completely, not feeling comfortable around anyone except your family and I truly understand the feelings of isolation and fear. You are in the midst of a major life change, having to use a wheel chair for mobility is a drastic life change and it takes time and strength to come to terms with that. Plus, the added frustration of having to purchase a van that you are having a difficult time getting into, which makes it a struggle each time you want to go someplace. You have good cause to be frustrated and afraid.
    I've read and been told that Lupus is included in the "Americans With Disability Act". If so, you might be eligible to get some information and/or help with retrofitting your van with a wheelchair lift and/or ramp. At the very least, they can point you in the right direction to tell you who can do it and how it can get done!! How about your insurance company? Will they help you in this area?
    I am no expert in this particular area, but I am sure that someone else here will have information, ideas and support for you. In the meantime, please do not worry about having to vent here...we are here for you and want to help you through this!!
    Stay in touch, let us know what you find out and what you were able to do!

    Peace and Blessings
    Saysusie

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