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#1 living linda

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Posted 14 April 2009 - 06:06 AM

:unsure: Hi everyone! I am a 15 year survivor of this terrible disease. I have read this blog for a very long time, but have been too shy to write. I think it's time I just "jump" in here. My fingers are so crooked that I type with one finger, so please excuse the errors. I just wanted to thank all of you for your comments. I feel I know each of you!

#2 jefa

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Posted 14 April 2009 - 06:20 AM

Hello, Linda

Glad you finally decided to join us out in the open. Welcome. Since you know all of us so well, why don't you tell us a little about yourself? I look forward to getting to know you better. We are happy to have you.
Warm wishes,
Jefa

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#3 living linda

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Posted 14 April 2009 - 06:59 AM

Thank you for the welcome! I am a wife and mom to a son and daughter. We have 8 grandchildren. I developed the blue fingers and extreme exhaustion, rashes, aches and pains about 17 years ago. I was diagnosed very soon after with mixed connective disease, then later with scleroderma. I have mild pulmonary fibrosis, the stomach issues, swallowing, and the aches and pains. I have had both hands operated on for broken tendons. My left fingers are fixed in a claw position except for my index which is helpful. My right fingers and pretty much curled, but more flexible than the left. I take a bunch of medications. and right now I am doing well. Except for the diarrhea today, and the bloating feeling because I ate corn chips last night. Thanks for listening. I look forward to chatting with all you.

#4 Cheryle

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Posted 14 April 2009 - 07:18 AM

Linda,
Welcome!
I was very shy and hesitant to post at first. But, I realized sometimes I am able to help someone with my personal experiences. So I got over my shyness. I imagine since you have such a long history of illness, you will be a valuable asset to the group. Never hesitate to ask a question either, there is usually someone with some great info or a suggestion that might prove to be helpful.
Cheryle

#5 janey

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Posted 14 April 2009 - 07:47 AM

Linda,
Welcome! I'm so glad you got over your shyness. As you already know, you've found a very supportive group. Isn't it nice to know that you are not alone? :) We're all here for you and each other so please join in anytime. Your comments and experiences are so appreciated.

Congratulations for your 15 years survival rate! What an achievement and inspiration. I'm only at 6 years so when I see 15 years it's such a boost. Thanks!

Big Hugs,
Janey Willis
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#6 Penny

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Posted 14 April 2009 - 08:56 AM

Linda,

Warm welcomes to the forum!

You are truly a fighter and an inspiration to so many here, because you are not just a 15 year survivor, you are a person who has overcome stuggles and daily challenges, making you a 15 year conqueror of adversity!

You will find many here who will look to you for inspiration and ideas on how to deal with every day tasks as well as offer you some of their own tried and true methods for making daily life easier to navigate.

As you have probably seen, hugs lurk around every corner in the forum and one of the biggest tools that we share freely and openly is laughter which is taken in large doses and often. ;) I had better warn you, we seem to be a bit contagious and you might find yourself laughing without warning at any time.

Warm hugs,
Penny

#7 Shelley Ensz

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Posted 14 April 2009 - 10:02 AM

Hi Linda,

I had to smile at your post. I remember the first message I ever submitted online. I was so nervous about it and after I hit the Send button, I wondered what on earth I was getting myself into. A whole peck of trouble, that's all! No really, I've met so many wonderful friends this way that I don't know what all my shyness and hesitation (and angst) was about.

Welcome to Sclero Forums! I think we'll make you an Unofficial Sclero Forums Greeter (USFG), so you can welcome all the other newbies and inspire them to take the plunge with their first message. You just know there's hundreds out there just like you, who have joined Sclero Forums, read it avidly, and yet are too hesitant to post.

Can you give them any tips on how you overcame your shyness and posted anyway? It's a bit like diving in the deep end, without knowing how to swim, isn't it? But the water is fine here and the poolmates are friendly!
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#8 living linda

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Posted 14 April 2009 - 10:59 AM

Wow! Do you know how special you all ( hint hint I'm from the South) make me feel! It is so encouraging to have someone else know just what you're dealing with. I personally do not know anyone else with scleroderma, so I look forward to the opportunity to chat with you here. Thanks!

#9 Jeannie McClelland

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Posted 14 April 2009 - 11:16 AM

Hi Linda,

I want to add my welcome too. This is a 'the more the merrier' kind of group, so having a new member is like getting one of Penny's hugs.

I'm at 2-1/2 years so I'm like Janey, really happy to see that 15 years! Long may you continue to chalk up the years in your survivorship.

It's going to be fun getting to know you. Again, welcome!
Jeannie McClelland
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#10 Margaret

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Posted 14 April 2009 - 11:55 AM

Hi Linda ,

Welcome. I have a 20 years old son who was diagnosed with UCTD 2 1/2 years ago. Initially, I thought he'd be gone by now until I found this group, got educated, and saw all the survivors, some for many, many years.

Take care,
Margaret

#11 Peggy

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Posted 14 April 2009 - 02:24 PM

I just wanted to send a very warm welcome. I'm glad you decided to jump in. Being you have had this nasty disease alot longer than some of us I'm sure you are a wealth of valuable information for all of us.

Again, Welcome!!!!

Warm hugs,

Peggy

#12 Sweet

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Posted 14 April 2009 - 04:56 PM

Oh Linda,

I'm so glad you posted. Now we can get to know you! *hugs*
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)