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Hi Marjori~

 

Your positive attitude is awesome and very appreciated. You will add so much to this site, thanks for finding us!

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Hello Phantomwi and Cleo. I too am glad that you found the Forums. There is always someone here that can relate and that is so reasurring.

 

~Welcome~

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I've searched this site for information over the years, but never took the time to register. It's way past time!

 

I'm a 36 year old mommy to 2 beautiful boys (ages 6 and 19 mos), and a wife to a career Air Force officer. We have been happily married for almost 14 years. Our lives are full and busy and FUN!!

 

When I was 25 and living in Vegas ('96), I had this annoying "white numb finger thing" and it was in the middle of the summer! It took a few months but ended up seeing a great rheumatologist there in Vegas and soon was diagnosed with Raynaud's, and a positive Anti-Centromere. My rheumatologist told me CREST might be in my future, it might not...for now, it was "just information to have."

 

We moved all around, we had two kids, I finished my degree, began teaching 1st grade, etc... life was busy and I never went to see another Rheumatologist. Of course hindsight is 20/20, so while six months ago I'd have said I had no need, I suppose I did.

 

Over the years I have progressed ever so slowly. I definitely have the R, some S, and lots of T. I am always complimented on how tan I look too. I figured I was really lucky that the big bad "it" hadn't really stopped me and if THIS was CREST Syndrome, I was jeeeest fine.

 

But I'm not. I'm pretty sick right now and I think my real journey for CREST is beginning now, not back in '96. I have tons of questions and am trying to read as much as I can.

 

I have some lung/heart issues. I'm in the middle of about a million tests and "ologists" and am just trying to be patient while we gather information so we can move ahead. Some days I can handle that, some days I just don't want to!

 

I look forward to getting to know everyone here. After years of infertility (and a support network online during those years that helped keep me sane) I know the value of a place like this.

 

Sorry so long...I got up with the new puppies and am a little slap happy that I can't sleep!

Maddy

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Hello, Maddy, and a big welcome to the ISN Sclero Forums. I am sorry to hear about the scleroderma that seems to be catching up with you after all these years, but at least you have had times to get to know something about it before it arrived. I am sure you will find this a great place for information and support. I look forward to hearing more from you.

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Hi Maddy and welcome to the sclero forums.

 

I'm sorry you have CREST, I do as well. If you've been reading here for years, then you know you have access to great information, an amazing support system, and great friends.

 

Looking forward to reading more of your posts.

 

Again, welcome.

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Hi Michelle,

I am a newbie to Sclero.org too, but I am already finding lots of information and help. I read in your introduction that you are probably going to be moving to NC. You will love it here. Winters are not too bad, but not like Ca. I can understand your frustration over doctors and diagnoses it took me 3 years to find a doctor in NC and I am still not too sure he is the right one. He does take his time with me and listens, so that is a plus. I, like so many other scleroderma patients read and soak all the information I can get my hands on. Keep on pushing until you are satisfied with your doctor, read and read some more, and never give up.

Regards,

NC Dreama

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HI Marjori,

Thank you for your post. Your strength and your fight for life is an inspiration to all of us. I hope that you are able to chime in here whenever possible.

 

Hello Maddy,

I am sorry to hear that you have scleroderma. It sounds like you have been through several battles in your life...but in return you have 2 beautiful children. I hope that we can be a great support system for you on your tough days, and share a laugh or two with you on your good ones!

 

To both of you...welcome.

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Hey Everyone,

I am 52 years old, have been living with Scleroderma for two and half years now. Summer has been good to me. I am in a good place now. My skin has loosened and I have more energy. Having Gastro problems that we are trying to work out (with laxatives, ha!) Don't know what the winter will hold for me but I plan to give it all I've got and face it with a smile. I am in Tennessee so our winters aren't too bad.

I am still working full time. (31 hours) and plan to as long as I can.

Thanks for your input in advance,

Becky

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Hi, Becky, and welcome to the ISN Sclero Forums. I am glad you found us and also glad you are "in a good place" now with your illness. I look forward to seeing some of that positive attitude shared on the forums. You should fit right in, as it is a wonderful group.

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Hi Everyone:

My name is Peggy and I'm 48 from Minnesota. I was just diagnosed with systemic scleroderma after a year of doctoring and suffering with trying to find out what was wrong. I started on cyclophosphamide a month ago and I am slowly learning about this disease and I am scared to death. I have had a lot of side effects with the drug in nausea and I am slowly losing my hair. I also have sjogren's and raynaud's and mixed connective tissue disorder so I suffer with muscle pain throughout my whole body and I deal with so much fatigue. Is this normal with the disease? How about work? I'm having a hard time getting through the day and am worrying if I an normal in what I'm experiencing. My family has been great and all are worried to death. I have a son who just got married and has now been called up to go to Afghanistan in January so he's scared to death on where his Mom will be in her disease while he's gone and what I'll be like when he comes home.

I also recently went to the Mayo Clinic website and needless to say saw for the first time what my hands will look like and was horrified. I have curling in my fingers already and I'm wondering how I will be able to cope when they are totally curled up. Can a person dress themselves; feed themselves, etc.?

I have also lost a great deal of weight and I'm not able to eat at all as everything tastes terrible and also have no appetite.

I'm looking forward to getting as much help and info as possible from this website and I am thrilled that I found it.

Thanks everyone and Bless.

Peggy

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Hi Peggy,

 

Welcome to the sclero forums! I am so sorry it's do to your multiple diagnosis. What you are experiencing is very normal for someone with this disease and the others you mentioned. I know it can be overwhelming at first and was for me for several years. Take one day at a time, start sorting through it as you have the energy and beat yourself up over things. Each person reacts differently, but we do have a lot of the same symptoms.

 

I'd like to start you off with a link about emotional adjustment. I hope that you find it helpful.

 

Again welcome!

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I am 62 and have had SSc for about 18 years. It started with Raynaud's and the to my esophagus. I had trouble swallowing food. I was put on medication and it was managable until five years ago. Now my whole GI tract is involved. I have had a colostomy because of incontinence, Barrett's Esophagus, and pulmonary fibrosis. Three years ago my stomach became paralyzed and I was put on Hyperal or TPN. All of my nutrition is done IV and don't take anything my mouth. I have a gastroentestinal tube in my stomach to suck out stomach stuff when I become distended and nauseous. I also have hypogammaglobunemia which I get an infusion of IGg every four weeks. Without it I am prone to different blood diseases.

 

I have had a portocath put in four years ago and have had it replaced five times since because of infection. Ihave had alot problems but I figure I'm still around eventhough I'm pretty usesless because I'm so weak. But I can still hug my grandchildren (13) and watch them play. The worst thing is not eating. I can literally salivate smelling different things. Is anyone else in this position. I haven't come across anyone who can't eat and would like to commiserate with them.

 

Thanks for listening, sometime I just neet to vent.

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Hi Bunny!

 

Welcome to the Sclero Forums. I am so glad that you've joined us. I'm really sorry for the intense involvement you have due to sclero. How much can one person take? You sound like you are staying positive and I have to give you a hand for that. I really look forward to knowing you better.

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Thank you for the reply. I live in Florida and don't know anyone else with this disease. Most people don't understand the intense involvement and because I lly physically look okay, except for being thin and use a cane, they thing I'm not so sick. Fortunately I have a great husband who is so helpful and supportive, I couldn't get along without him. We have 8 children between us. It took them some time to realize how much I have gone down hill. They're use to me doing everything and being very active. They've come around after I was hospitalized several times for weeks at at time. They are a big help now too. The grandkids are so used to seeing me with things stuck in me and different tubes they don't think anything of it, it's just Bubbe.

 

I'm on reglan, prevecid, amitiza, zofran, allegra, effexor, sandistatin, methotrexate, lipitor, tpn, and cardizem. I also am on arimidex.

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