Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , I have 5 kids. I do feel pretty dang bad at times not being more active with them. I have to take a look at real life and see that not every child has a healthy active parent and my kids will be ok. I sure know how you feel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 What bugs me the most about the invisibility of the disease is the time my Aunt was in tears, she has a handicapped placard for her car. Some one saw her get out of her car and walk into the store, and proceeded to leave a long nasty note about the need and use of a blue parking space. Some folks, like family members, should get it sooner then others that what they can't see is real to us in terms of pain. Other people that only see us as passers by on the street can be excused of there ignorance, because they may simply not know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Hello I have not talked on this list for some time, but I have been lurking around :-) Anyhow for those that do not know me I am Heidi, I have four children ages 14, 11 and 7---boys and a baby girl-5 months old. I have CMT Type 1A and my two oldest boys also have cmt 1A. I am in the beginning stages of opening my own in home licensed daycare. This reminds me of about a month ago I had gone to the supermarket where my neighbor had worked and as I opened the trunk of my car he saw my wheelchair and he said what is that for, " I am disabled. " I replied in a friendly tone, he said, " What do you need that wheelchair for? " Look I am handicapped. " He says , " yes but what do you need it for " . I was getting very disouraged then I explained to him that I used it like if we took the kids to the theme park or on long distances and he said, " Oh you don't need that. " I finally just gave up on this conversation it was going nowhere fast. He was only seeing what he wanted to see. I sometimes feel very alone and then begin to question my physical challenges myself and gthen I go back to my diagoses and say oh yeah that is right I do have CMT it is not in my mind, okay my mind is fine, phew... The point is we must all remember that no matter what others think, or say they can never understand the pain or the degree of frustration one lives through day to day. I am happy with my life and feel very positive about many things and I am happy that I have learned so much from having CMT. Yet, I have to educate others about it in some way too. So I can understand your aunts feeling I only hope her heart can heal. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 I have a cane in my truck, started using it during the holidays, because we all have gremlins that make our body ache, and some days they just make more noise. With CMT I get an extra dose of the gremlins and it seems they all play the accordian or sing for hard rock groups. Pettit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 This reply is late, but I just felt I had to do it. Last Sunday after Mass my husband and I made a stop at a local retail outlet. My husband mentioned that perhaps we should get a handicapped sticker - because of me. You see, he was a cup minister at our mass and I, of course, went up to recieve. Although I had felt rather off-balance for a couple of days, I felt that I had done well. My husband replied that I looked " rather unsteady " . So, what to do? The sticker certainly would help when one has to walk a great distance due to a crowded parking lot, but for the most part, I feel I don't look disabled and would probably occasion the same treatment 's aunt received via her note. Just teaches us we can't judge a book by its cover! Thanks, P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 You know , I used to feel the same way... I don't " look " disabled so I am embarrassed to have people look at me questioningly when I get out of my car. But I finally realized that it is more embarrassing and far more painful to fall in the parking lot because it was too far or the surface was too uneven for me to navigate. It isn't an easy thing to get past (the self-consciousness), but once you do life becomes easier. The most important thing is to take precautions to keep yourself healthy. Take this from someone who has had to learn the hard way over the last few years. Nothing is more precious than your health. So get the sticker, you won't regret it. >From: amtcp36@... >Reply- > >Subject: Re: Invisable Disability >Date: Thu, 6 Mar 2003 12:15:55 EST > >This reply is late, but I just felt I had to do it. Last Sunday after Mass >my husband and I made a stop at a local retail outlet. My husband >mentioned >that perhaps we should get a handicapped sticker - because of me. You see, >he was a cup minister at our mass and I, of course, went up to recieve. >Although I had felt rather off-balance for a couple of days, I felt that I >had done well. My husband replied that I looked " rather unsteady " . So, >what >to do? The sticker certainly would help when one has to walk a great >distance due to a crowded parking lot, but for the most part, I feel I >don't >look disabled and would probably occasion the same treatment 's aunt >received via her note. Just teaches us we can't judge a book by its cover! > >Thanks, > > P. > > > Quote Link to comment Share on other sites More sharing options...
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