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I've Had Scleroderma Since I Was 10 Yrs Old.


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#1 R'egene

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Posted 30 November 2006 - 11:36 AM

Hi My name is R'egene,

I am now 21 years old with localized scleroderma and life is challeging. I was diagnosed with the illness in 98'. It changed my life drastically. I have a 2 year old son who I barely had because of my weakened muscles. I cannot work because of extreme fatigue and pain in my feet, hands, and legs. The bad circulation from sitting at a desk all day is unbareable. I have been on steroids for 8 years and also cumadin. My left lung is collapsing and I have also been diagnosed with pulmonary fibrosis and JRA because of the scleroderma. I would love to know how others members deal with this disease.

:) :(

#2 Heidi

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Posted 30 November 2006 - 11:57 AM

Hi R'egene,

Welcome to the forums! I am glad you found us but sorry it is because of your scleroderma. You say you have localized scleroderma....linear or morphea? (if you know). It sounds like you have a lot going on! I don't know how much you have read about pulmonary fibrosis, but here is a link from our Sclero website which may provide you with some information: Pulmonary Involvement.

Again, welcome! I hope you will come and post often and keep us posted on how you are doing.

Warm wishes,
Heidi



#3 janey

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Posted 30 November 2006 - 12:29 PM

Hey Darling,
I think your :) :( represent all of our lives. It says it all doesn't it? You are remarkable for taking on the challenge of having children when having sclero. You are a very brave and optimistic young woman. I'm glad everything worked out for you and your son.

As you already know from just reading the posts on this forum, everyone deals with this disease differently; except for the fact that we all have our up and down days. The challenge is to reduce the number of down days. I do it by keeping my mind busy since my body wants to do a minimal amount of the work. I work part-time in a paying job and then part-time on other projects, one of those projects being my health and finding ways to make it better without taking more and more drugs. Right now, I think that is my biggest challenge. I stay in contact with friends although I have lost a couple of very good friends because they can't handle being around me because "I've changed." I consider it "their" problem, not mine. We just take one day at a time and wake up each morning telling ourselves "Today is going to be a good day."

Welcome to our forum Darling! I'm so glad you have joined us and hope you visit with your new friends often.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Sweet

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Posted 30 November 2006 - 12:51 PM

Hi Re'gene!

Welcome to the group. We're sure happy to have you here, but I'm truly sorry you are battling this disease.

I can certainly relate to the changes that take place in our lives due to illness. My life at this point doesn't even come close to resembling the life I led even two years ago. It really is an adjustment, especially emotionally. I see that Heidi gave you a couple of great links to review, I'm sure they will be helpful to you.

You're among your own here, friends, family that are here to support you. Post as often as you like, and ask any questions you may have.

Looking forward to getting to know you.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 R'egene

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Posted 02 December 2006 - 02:59 PM

Heidi,

Thanks for the helpful information!! I didn't know they had a breathing treatment for pulmonary fibrosis. Right now I am just using albuterol, and it doesn't help much. I don't know if I have linear or morphea. How do I find out? I have a big tight patch on my left leg that is white and brown colors. Would that help me? Thanks for being so helpful. I couldn't ask for mor friendly people. :P

R'egene

#6 R'egene

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Posted 02 December 2006 - 03:07 PM

Janey,


I read your post. Thank you so much!! I too have lost some friends and family members. My friends are my age and they don't understand what it is I am going through. I try to explain it and I never complain when we go somewhere. They just don't understand. I don't blame them, but I won't stress out over them giving me the support and understanding I need. I try to stay positive because if I didn't I would spiral into a depressive state making me believe I won't live past 30 like my doctors said and my life will only get worse. I have to be there for my son, and until that day comes I will stand strong for him no matter how bad it hurts to tie his shoes or turn on the faucet to run his bath water. He makes me so happy and im glad I have my mother and people who understand............like you. I hope we become good friends and maybe one day even meet. I'm just so excited to finally meet someone like me. I'm not alone after all.


R'egene :)

#7 R'egene

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Posted 02 December 2006 - 03:15 PM

Sweet,

It is very hard battling this disease and I know it's even harder for you since you were diagnosed 2 years ago. It seems to take over your personal and career life. I had to stop playing sports in 7th grade and I couldn't do the things my friends wanted to like go to Six Flags and get up early to go to the gym to workout. I told them I couldn't breathe on the rides and the fatigue makes it unbearable to get up in the morning. The gym was causing me to have breathing attacks and migranes. Some of them didn't understand, but I got over it and realized I have to be happy for myself. There are true friends who won't be bothered by those simple things and there are others who dont understand and dont really care to. These 12 years have been hard, but I know I can do it. I know you can too. You are very pretty. Thank goodness the scleroderma doesn't show in my face either. At least not yet. They say it gets worse before it gets better. Don't give up hope.


R'egene :)

#8 emmie

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Posted 02 December 2006 - 05:43 PM

R'egene,

I just want to say a quick welcome and let you know that I think you are a wonderful asset to our sclero-family here! Thanks for signing on with us.

xoxo emmie

#9 Heidi

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Posted 02 December 2006 - 06:13 PM

Hi R'egene,

From your description, it sounds like you have morphea scleroderma. Here is a couple of links from the the Sclero web page that talks about linearand morphea.

I hope you find this information helpful.

Warm wishes,
Heidi