Living With Limitations

by choosing life 44 Replies latest jw friends

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  XJwFree2BMeWJC

  Thank you CoCo. I'm so happy for you that they misdiagnosed you. Asthma is much more managable! When I get bad I use Azmcort, a steroid inhaler for a time.

  Lady Lee do you have a regular chair or a scooter? Do you have a preference?

  Southern California has some judgemental health freaks. The last time I was using the store scooter this thin, richly dressed woman was shopping alone and as she walked by me she said "it must be around the first". Meaning of course the welfare shoppers were out.

  I really don't care at all what people think, but that comment hurt for some reason. I guess it is just pride. Once at Walmart the checker was so patronizing. She called me "honey". Honey? They don't call me honey when I am walking! lol...Get into a scooter and all of a sudden I am no longer Mrs Wells but ..honey

  Sorry I am whining and you have been dealing with this already for years. I hope they treat you better up there.
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  Lady Lee

  I have had 2 power chairs and 2 scooters. The first power chair was an old one that I got for free- too small for me but it got me out. The first scooter was also given to me. It was an older machine that could not be repaired once it broke down but I got one amazing summer out of it.

  I now have a new power chair made to fit me and my needs. It is awesome but the battery gets real sluggish in the cold. I go everywhere with it. I don't have a car but the city has both adapted vans that provide a door-to-door service - which I hate using and the regular bus sustem that has kneeling buses that lower a ramp for me to get on the bus. I can go everywhere. The power chair is very stable and I only had one problem when a wheel broke and I ended up with the chair on top of me instead of the other way around.

  Last spring I was given another scooter. It is good 3 wheel machine but was really designed to fold up and stash in the trunk and mostly use indoors. It isn't as stable as my old scooter so I don't use it in the winter.

  For me, I want and need stability and endurance. If I was only using the scooter to go through the mall it would be great. If you want to wander around outside I wouldn't recommend them - even if they had 4 wheels. Some of the solid heavy duty scooters would be great for getting outdoors.

  It really depends on what your needs are. That is where an occupational therapist can help a lot in assessing your particular needs and what best suits you and those needs.

  As for that incredibly rude woman - don't ever allow ignorant and rude people steal your self-esteem and pride like that.

  Far too many people think if there is something wrong with our ability to walk there must be something wrong with our minds as well. (main reason I left my second husband) I hated being treated as if I had lost my mind when I stopped walking everywhere.

  I think if anyone called me "honey" I would be so tempted to call them "honey" back.

  You aren't whining. How else can you begin to talk to someone about these issues. I have yet to find a self help group for people with acquired disabilities

  If what I say helps then keep asking
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  XJwFree2BMeWJC

  Thank you so much!

  I remember when that happened to you, when the wheel broke. I felt sooooo bad for you. As I recall you were in a lot of pain.

  Yes it really does help chatting about it. Can you believe I forgot to talk to the doctor about a chair today. There is so much going on we never got to it. He wants me to go on yet another series of antiobotics to try to shake this virul infection I have had going on since Thanksgiving. I'll have a few good days after finishing up antibiotics and within a few days I am full forced into another flu.

  He gave me a steroid inhalor to try to fix the respiratory issues. We talked about the fatigue which concerns the needs for a chair. Doc wants to see how I am after we tackle the immune system problems. Everyone is hoping I have a remission and take a turn for the better. I always hope that too but it has been several years since I have been able to function on even a low level.

  Lady Lee what is the closest they have ever gotten to giving you a valid diagnoses? That must be frustrating for you. I remember before the bulk of my diagnoses I was beginning to think I was crazy. They couldn't find anything wrong but I was sick. By the time they finally found the main problem it was actually a relief to at least know.

  I understand about the ex husband although my ex problem was a little different. He liked the fact that I was sick, he liked me being dependant on him. Made him feel secure and his treatment of me would contribute to my poor health via stress. Maybe he knew the verbal abuse made me sicker. Afterwards I was alone for 6 years and was very happy. Better to be alone than to be married with stress. I just got really lucky with my current husband.
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  Lady Lee

  I went up and corrected something in the post above. It is the power chair that was made specificaly for me - measurements and all.

  They have tried a few different labels

  • Plantar's Fasciitis - not that
  • Metatarsalgia - an inflammation of the pad pehind your toes - I still have that label even though we know it isn't an inflammatory problem
  • neuromas - bundles of nerve endings that gets tangled and pinched between the bones in the foot - not that either
  • I have been exploring something called erythromelalgia - the symptoms are all there. I have joined an e-group and have no problem relating to what they are going through although I think I have a very mild case

  The doctors have pretty much given up looking for a cause and we are just treating symptoms. Fortuneately for me the treatments for erythromelalgia are the same for my symptoms. There isn't a lot of info about this problem so at this point there is no talk about a cure even for people who have been correctly diagnosed.

  Next time you go to the doctor make a list of things to ask. And don't forget to take it and read it --- like I usually do.
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  d

  I have Hydrocephlaus which in the past I used to get headaches and I was confused alot.It has affected me in some ways but I am making up for it.