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Old 12-21-2013, 07:56 PM
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,440
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,440
15 yr Member
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Quote:
Originally Posted by ElaineD View Post
Interesting, Kitt. I don't know that 'not autoimmune' makes much difference with most people. But maybe it does.

Perhaps "genetic' is more understandable than 'autoimmune'. Many people think that autoimmune means "all in your mind!". Well maybe not Lupus or RA, since I think they have higher visibility perhaps?

I just gave up on explaining, except when I think I'm talking to some one who might really understand. But when I has come to my own family, especially the medical side of the family, the understanding seems even less!

On the whole, since doctors often don't understand, I guess we can't expect the average person to 'get it' either.

And honestly, on some of my forums i hear the most...oh dear I was going to write 'nonsense'. I try not to be judgmental. But today on one forum a poster was rambling on and on about how 'bad and evil' adrenaline is. First, it is usually called epinephrine in the medical community and second is it vital to the functioning of our body.

I tried to explain what epinephrine (adrenaline) does, and she said, "I think you're talking about Dopamine". I should have given up at that point.

And she has a condition. It turns out that having a condition doesn't give you any greater brain power or common sense. So I do understand what doctors often have to deal with.

I have learned so much and found so many ways to deal with my conditions on the forums.

I am not finding ways to deal with my neuropathy so much as ways to accept it.

Today I was reading some research done in the 80's which established that when you have peripheral neuropathy you cannot compensate in your BRAIN for the nerve damage in your legs. Of course we know that now, and those of us who have it surely know it. AND YET, I have people who watch me walk tell me I just need to exercise more and build up my strength!

As I said, when I began to have nerve damage, I realized how insensitive I had been to those who have had strokes and other sorts of nerve damage. I thought they just had to try harder.

Maybe I would be happier today if I had never learned more compassion, the hard way by experiencing first hand the conditions I failed to understand earlier.

But I feel like I've learned a new way to look at life. It has to be accepted. It just can't be wished away, or done away with by will or anger or denial.

Hugs, Elaine
Hi,

Sorry, I should have said CMT is not an autoimmune disease. An autoimmune disease is an illness that occurs when body tissues are attacked by its own immune system. Thus - body attacking itself. There are quite a number of diseases like that. Such as MS, Scleroderma, etc. Click on:

http://www.niams.nih.gov/HEALTH_INFO.../default.asp#2

No, we cannot just wish away whatever is going wrong with us. Thank you for your post.
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Kitt

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Last edited by Kitt; 12-21-2013 at 08:15 PM.
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"Thanks for this!" says:
ElaineD (12-21-2013), hopeful (12-23-2013)