Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-13-2007, 12:32 PM #11
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Default Hi Mark,

Children need to be taught how to treat the disabled but unfortunetly some parents are too ignorant to teach the kids what is right and wrong.

Recently my Grandson, Devin, who is 12 had a friend that he has had ever since he was in kindergarten with him develop MS. Being put on her meds she has gained weight from them and all of the kids in school had been making fun of her. Devin joined in and laughed at her and Dustin came home and told Susan what Devin did and that it was wrong. Susan sat Devin down and explained to him that it was wrong to make fun of people no matter what was wrong with them. Devin called his friend up and apologized to her. This goes back to what I said that kids don't always know what's right or wrong but they can be taught and should be.

I do believe that people have less respect for each other in these days and ages. You see the parents being worse at times then the children are. I realize there are a lot of good people out there but I still see a lot of wrong being done today.

Try not to let it bother you Mark, it's not anything you did, so you should not let it eat at you. I have scars on my neck where I have had my surgeries and I wear low cut tops. I look at them as a symbol of what I have made it through.

Like Jo I have also worn braces all over me and just told everyone I had arm and hand problems.

I hope you start feeling better soon and don't let this wear you down.

Ada
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Old 06-13-2007, 12:37 PM #12
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Hey Bud,

I think I am going to get one of these. Big Hugs, Roz

http://cgi.ebay.com/ws/eBayISAPI.dll...ype=osi_widget
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Old 06-13-2007, 04:53 PM #13
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Mark,
I understand what you mean. When I was so bad I couldn't walk at all I was either in an electric scooter or chair. I was so ashamed/embarrassed or something like that (neither word is exactly what I want to use, but they will have to do cause my brain is exhausted/fried & it just won't work like it use to) at first to use them cause I felt everyone would be looking at me & thinking "she doesn't look ill or like anything else was wrong with her". But once I started having more confidence in myself out in public I noticed people here in northern CA didn't hardly give me a 2nd look. EXCEPT to get in front me in a line or dodge around me in the aisles. Which then I would open my mouth loudly about how damn rude people were *LOL* See I have no problem now being very sarcastic & loud about it, when people are rude (just ask my hubby ). Or being rude right back at them . When I see one hurrying to try to beat me somewhere, I poor the juice on my chair & almost bowl them over *ROFL* instead!!! I have gotten past the way people look at me as if I should not use a store scooter or my chair and I just don't give a rats ***** what any of them think of me either way anymore. I am what I am & they don't have to know what is 'wrong' with me. I guess I finally got a toughened skin now & that is why not too much out 'there' bothers me anymore.

I think people in this area have gotten use to seeing me out shopping using either the store scooters or my chair and it is like they almost fall over themselves helping me. Sometimes I would rather do for myself, but it seems like I burst their bubble when I refuse their help *LOL* Depending on who it is if I see that happening I will either give in to their help or I won't. Also depends on how I am feeling physically. Sometimes I am also very very grateful for their help.

You hang in their Mark & chalk that one up to total ignorance on the mother's part. And hopefully the child will grow up to not be like her mother & make the choice to be a much better person. That can happen also. You can't blame the child for how she is being taught.

A friendly your way,
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Old 06-13-2007, 11:20 PM #14
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[QUOTE=artist;112513]Hey Mark,

Some ideas for you for when (I won't say if) it happens again:

Make disgusting faces until they look away. If called on your rudeness, apologise and explain that your doctor has prescribed these therapeutic face exercises, and offer to demonstrate.

Attempt to engage them in friendly, normal conversation about the weather. If this doesn't work, start to drool mid-sentence.

Say "Keep staring. I might do a trick."

(Especially after the above.) Fake a seizure, sudden pain, or death rattle, followed by yelling "Ha! Fooled you!"
OMG Artist! I got my LOL for the night! too funny! Loved this though.. Oh.. the visual Love, Desi
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Old 06-14-2007, 05:34 AM #15
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It is disgusting that any form of "difference" (whether it be the child with Downs, a wheelchair user, someone with a speech impediment, visual issues or who walks badly or a tourettes sufferer) is immediatly seen as scary, dangerous and contagious! It is almost seen as an embarrasing situation which should be brushed under the carpet. There is this idea that if you don't look at people who are "different" then they can't exist and there is no chance that you, or your family or your friends could have to deal with it.

I hate stupid small minded people who just think that if you don't acknowledge and issue then it will never exist for you. I became a wheelchair user when I was 16 and am horrified looking back at how I was first treated by others and it felt at times like people were trying to make me feel guilty for having to use one, and not just family but society in general.

If ignorant parents teach their children to be ignorant then how can the whole world move on?

Sorry, it just frustrates me so much! When I see it happen with children towards me I just say "I had an accident and my arms and legs don't work properly anymore" and that's fine and over and done with.

It's as if parents are worried you will kidnap the child, breathe on them and give them the disability.

GRRR..

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Old 06-14-2007, 07:02 AM #16
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No, the kids themselves certainly aren't the issue... it's the parents. Left to themselves, kids will walk up to a person in a chair and bluntly ask them "what's wrong?". I think that kind of openess is a wonderful thing, once you get past the initial shock of how "rude" the question sounds at first.

I had a friend in a wheelchair due to a motorcycle accident. He was great with kids, very patient in explaining what had happened and what life was like for him. He'd step in when a parent tried to shush their kid and try to stop them from asking Drake anything. He'd simply say "No, that's ok. It's important for them to learn, and important for me to explain."

The coolest thing he ever did was give my sons a spare chair to try for a few days. He had done this before, with other kids. The only condition was that they had to STAY in the chair when they wanted to do something... they couldn't just jump up and go about their business. They had to truly see, if only for an hour or two at a time, what it was like. It was quite an eye-opener for them, and gave them new respect for the hassles the disabled go through on a daily basis. Little did we know that within a year, they would need that knowledge (tho not to that extent, thank you God) to deal with their own mother.

I have to tell you all, this forum has been very good for me. I had NO idea how withdrawn I had become, how depressed. But when I read some of these posts, and remember people from my past that I should never have forgotten in the first place... well, it does something good for my heart. Thanks everyone
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Old 06-14-2007, 01:29 PM #17
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very true rogue! xxxxxx
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Old 06-15-2007, 11:07 AM #18
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Hi Mark,

One of my son's (this was when he was in 8th grade) had a dear friend a few houses from us who had severe leg problems from birth. The kids would tease him all the time.

My son who had never been in a fight in his life, got fed up with the kids being cruel to him, well he let them have it. He was suspended from school for a few days. Just some blacks eyes and bruises were the only injuries.

He did not get into any trouble from me for that fight, just from the school. I gave him a high 5 under the circumstances. Big Hugs, Roz
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Old 06-15-2007, 09:36 PM #19
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Hi Mark,
Some people are really insensitive. I have to use the scooters in the stores & often notice children staring at me. Some times I think they just want to know how the scooter works & wish they could drive it. But I also know that kids are curious. I just smile at them & they usually just smile back and that's the end of it. But sometimes the parent looks uneasy, like they just want to get away. I guess it bothered me more at first but now I don't let it get to me. What bugs me is when people ram their carts into me. I wish they would watch where they are going.
It really is a shame that people aren't more compassionate.
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Old 06-15-2007, 10:33 PM #20
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Hi,

I've noticed an interesting thing with my dogs. No, it's not off-topic, lol; if they see a human being who doesn't conform to their notion of *the silhouette* of a human, they bark and become hostile.

An example - my friend's son had one of those plastic terminator robot/gun arms; my dogs would go bananas the moment he put it on, just wearing it. But anyone carrying anything strange that confuses the normal silhouette seems to do it. So I suppose it's inbuilt defensive/fear of the unknown programming.

OK, I know we should know better than dogs, but we don't do we? And it doesn't just happen with wheelchairs, scooters, etc. Anything physically out of the norm will provoke the staring and edging away. Not surprising in an era where people surgically try to make themselves look like a clone of some publicist's idea of "standard beauty" - specially in the US, Brazil too...

But it's not just that, people are tremendously uncaring - as in, they just don't care. Did you see the short video I put in the Humour thread? It's very funny, but the behaviour of that guy is very dreadful. Here, if you missed it:
http://www.youtube.com/watch?v=TWTieYeVtfc

And they're really careless too. I've had to wear an arm sling a few times; in the days when smoking wasn't a capital offense, I'd hold a lighted cigarette in front of my slung arm in crowds. That worked.

Friend of mine, electric wheelchair-bound, used to have a hinged cardboard cutout of himself (full-size, standing, taken before his accident, he is 6ft 3in) attached to the back of the chair, looked like he was pushing himself. That gave them something to stare at, lol!

all the best

Last edited by artist; 06-16-2007 at 01:12 AM.
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