Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Hi Sonny, I haven't had a stroke. It is something I will admit to worrying about. Lupus has effected my CNS. I have developed such twitching and shakes in my right hand that I frequently have difficulty writing. In order to remain in control of the keyboard I have to rest the heels of my hands on the base of my laptop. So far that is working out OK for me. My memory is something else though. I will forget topics of conversations - I totally lose words, easy ones like street - and I frequently say the wrong word knowing for sure I said the right one. Around the house I usually do OK. If I am a little off balance or more tired than my normal exhaustion I use a cane. I am currently in the process of accepting my wheelchair. I have Christmas shopping to do and there is no physical way I can go without using a wheelchair & without someone taking me. The loss of independence is so horrible that sometimes I can hardly stand it. I haven't been able to drive for about 4 years now. The ONLY good from it is my handicapped plates and window card. I get all the good parking spots. I sure would gladly give them up and park in the lower forty acres if I could just have the strength to take care of myself. - - So yes, in my way I think I understand what you were saying in your post. When I first joined the group I felt totally like a fifth wheel to the point I was going to quit. I am so glad I stuck with the group. I have been able to get the moral support I need from people who truly know how I feel because they have experienced the same or similar things. Hopefully you and I will be able to get better acquainted. I really need to hear what you have to say. I don't remember if it was you or another new group member last week (or week before) that was talking about their acceptance of needing a wheelchair. I felt a solid kick in the butt. I have a very nice wheelchair. My husband and I had a very close friend who was quadriplegic. We loved to take him places with us, but had no way of transporting his puff and sip chair (he used straws to suck and puff on to move his chair) and his regular wheelchair was shot - so we bought him a really nice sturdy chair. When he died we brought the chair home thinking we'd donate it to some organization. Then with my diagnosis of Lupus we covered it with heavy plastic and left it in the garage for the "someday" in the distance when I just "might" need it. Well, that someday is here. The posts I read recently about wheelchairs is what brought my chair from the garage into the house. Man that was a hard thing to do. I'm glad you found this group. Hope to hear a lot from you if you can. Hugs - a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Sonny hang in there. I understand your not wanting to get in that chair. My doctor was afraid to order a wheelchair for me because they say " once you are in the chair you don't want to come out. " There are times I DO need it though...but being 36 and " looking healthy " when I use my handicap plaque boy do I get some dirty looks from the elderly. It's the same old story " I LOOK healthy " . I even got into an arguement with someone because they didn't think I deserved to use that spot and that I was using my grandparents plaque. When I went to Mall of America, in Minnesota, I made a button that had the wheelchair person on it with the words I HAVE LUPUS on it. I wore that around while my husband pushed me around...it actually started up conversations about what Lupus is and how it affects us Lupies. Turn your wheelchair into fun...maybe paint a racing stripe down the back of the seat and a " stay off the sidewalks " sticker. LOL Welcome to the group and God Bless us everyone. Blessings, > paula > thanks so much for you and a few others posts to me, now i some what > feel part of the group. no i was not the one that had to accept the > wheelchair, i had no choice. i had to remove all doors from the > bedrooms and hallway and hang curtain up. my daughter put up some nice > one she even got a matching set for the windows and comfortable. even > though i stay by myself now it make me feel like i don't have all my > privates. yes the handicap card is all right but i also would walk a > mile. i get so angry when i see people take the spots and they get out > of there cars running. > sonny Quote Link to comment Share on other sites More sharing options...
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