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Glad I found you all!


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#1 Deb1million

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Posted 27 May 2009 - 05:11 AM

I've just been diagnosed with Systemic Sclerosis, this is on top of other autoimmune conditions diagnosis of: systemic Lupus, autoimmune hepatitis, Sarcoidosis (in my spleen) Thyroid problems, Raynaud's, and Type 1 diabetes (at age 4).

I also have a cyst on my spinal cord but it doesn't affect my mobility, and my toes are missing due to Thalidomide. I consider myself very lucky that it didn't affect my hands!

I'm a very cheerful person, and don't let the increasing log of conditions get me down. Nothing gets me down! I've just returned from a trip to New Zealand, and my doctors would tell me off for the bungee-catapulting, luge runs, horse riding and mountain climbing, so don't let on will you? ha ha! I was exhausted most of the time, due to lack of breath, but didn't want to miss a thing. I believe in doing "What I can, When I can, If I can!"

I see that all the members here have an equally positive outlook - it's what keeps me going on bad days, so I'm glad I've found this lovely collection of people. I love reading the blogs, too.

Debs

#2 Amanda Thorpe

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Posted 27 May 2009 - 08:18 AM

Hello Debbie

Marvellous to see you at last!

You are now among friends and as you say despite our ailments we're all really happy! We know how to appreciate life that's for sure.

Does the lack of toes cause problems walking or is this something you've long since overcome?

Your holiday sounds amazing, good for you for doing everything you could but what are luge runs?

Look forward to hearing more from you and take care.
Amanda Thorpe
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#3 Deb1million

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Posted 27 May 2009 - 08:41 AM

Thanks, Amanda
The Luge run is like the ice sport of tobogganing crossed with go-karting. We went up the mountainside on a cable car, then came down on a wheeled sledge. Some of the bends were tight, and as I'm an adrenaline fan, I was going pretty fast!
The Thalidomide damage affects my balance and I have a 'stomping' gait when walking. The worst part is getting shoes that fit well. Other than that, nobody would ever know. I look really healthy, too, as the Lupus gives me the classic rosy face.
It's hard some days when everyone is telling me how well I look, but actually Im in a lot of pain with my spleen, insides, and hands. And nobody has even heard of Systemic Sclerosis or most of the other things I have, so there's no point explaining as they would think I'd made it all up. I just smile and say I'm fine. :)

Debs

#4 Cheerful Carole

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Posted 27 May 2009 - 09:41 AM

I have given up trying to explain to people what my problem is - where do you start. As you say, most of the time we look fine .... :unsure:

#5 Amanda Thorpe

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Posted 28 May 2009 - 07:35 AM

Hello Debs & Carol

Let me just say how well you both look! :lol:

Oh, the irony of it, we feel awful yet look great. Although I think, particularly as ladies, we want to look great people never have any idea how ill we really are and how much of a struggle it is just to stand up.

A stomping gait makes you look determined and authorititive by the way.

I now tell people I have a rare form of arthritis, which scleroderma is, but this description doesn't cover the internal organ side of things and I want people to know I have a serious disease I tell you! I did used to say "it's an auto immune, connective tissue, rheumatic disorder" but people just blink rapidly in reply.

How about trying "I have a scorching case of the screaming heebie geebies"? Do let me know how you get on.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)