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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Debbie C

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Posted 14 August 2008 - 02:42 PM

I am new to the forum, but have been reading this site since I found it in April when I was diagnosed with CREST or limited scleroderma. As I have read with many of the posts I was scared and felt alone, reading this forum helped me come to grips with having a new disease to battle. I currently have Fibromyalgia, Raynaud's, Lupus (skin kind for now), tendinitis and bursitis. I used to share all my fears with my husband, but he passed away in December. I think that is what "kicked in" my CREST. I started with the red blotches and of course I have the Raynaud's. I really enjoy reading all the different topics and how everyone shares and watches out for each other. It's kinda like your own little family. I hope you have room for one more! :)

Thanks, Debbie C

#2 janey

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Posted 14 August 2008 - 04:14 PM

Debbie,
Of course we have room for more one! Welcome! I'm so glad that you have decided to join us. I am sorry that it is due to your CREST diagnosis. I am also sorry to read about all that is going on with you and especially about your husband. Having a husband who also shares my highs and lows, I know what a loss it would be. My heart goes out to you Darlin' with a very warm hug.

Sounds like you have a lot that you are dealing. We'll help you through. Welcome to the ISN family.

Big Hugs
Janey Willis
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#3 JJ-Knitter

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Posted 14 August 2008 - 04:23 PM

Hi Debbie,

That's a shame about your husband. I'm so sorry.

This forum and our extended family is just wonderful and it gets better with everyone who joins!

Warm hugs from me too!

JJ

#4 razz

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Posted 14 August 2008 - 04:41 PM

Welcome Debbie!

There's always room for one more Debbie, pull up a chair and get comfty. We look forward to having you be a part of this wonderful ISN family. You will absolutely like it here. We are always learning something new, from each other or from our fantastic investigative research staff. Whether you're feeling up or down, we're here for you. I've been here for a couple of months and I've enjoyed experiencing the chat rooms, the kitchen, the den. I've even gotten lost a couple of times :) where people have sent search teams looking for me. The welcome here is phenomenal.

I am so sorry to hear about your husband passing away. Feel free to come here any time!


Hugs,
Razz

:)
Live well, Laugh often, Love much

#5 barefut

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Posted 14 August 2008 - 05:48 PM

Welcome to the family Debbie!

Always room for one more. So sorry about your husband's passing. Glad you feel comfortable to post with us. Looking forward to hearing more from you. :)

#6 relicmom1

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Posted 15 August 2008 - 03:45 AM

WELCOME ! ! Debbie. You have found a wonderful online "family" to share all of your concerns and triumphs, ups and downs, anything your little heart desires. We are all here for each other. I, too, have CREST. I began this little journey about 12 years ago. It took about 3 years to get a proper diagnosis and you MUST stay up to date on info, 'cause most doctors know little. We are our own BEST advocates. Any question or concern you may have, no matter how trivial it may seem to you, is NOT TOO TRIVIAL. Throw it out to us and we will do our level best to help or direct you.
Peace :)
Barbara aka relicmom1

#7 Amanda Thorpe

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Posted 15 August 2008 - 12:08 PM

Hello Debbie,

I am glad you find interacting with others helpful. When first diagnosed I made myself telephone the local society to talk to another scleroderma person. I was feeling like the only one and afraid of what was coming.

I am sorry you have lost your husband and his support. You'll get lots here as there are people (not me) who have a wealth of info you will benefit from.

You also have alot to be getting on with disease wise. My twin has follicular lupus and is losing her hair. She tries to compete with me but SSc (scleroderma) wins hands down.

What ever question you ask someone here will have an answer so you're in good hands.

Amanda
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#8 Nina

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Posted 15 August 2008 - 12:38 PM

Welcome Aboard Debbie! I actually feel like this is my "ship in the storm" ~~ and absolutely everyone on board is wonderful, considerate, compassionate and thoughtful. Lots and lots of very valid information from the research staff also. I can't say how happy I am to have found this wonderful forum!
Stick around and add your thoughts, concerns whenever you feel comfortable.
Much love,
Nina

#9 Debbie C

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Posted 15 August 2008 - 12:55 PM

I've had the same rheumatologist since 2002 and he just waited for new things to arise to do anything. I'm not a sit and wait kind of person, I like to be proactive and manage things before they progress. I did lots of research on this site when I was diagnosed with the CREST and you all are just a wealth of information! I also was afraid that is was a death sentence for me. Not in life terms but the curling fingers. You see I have been working in an office as a "senior sales coordinator" which is basically a glorified secretary but I also manage 2 other offices in our district. With the stress of work I'm surprised that more symptoms haven't reared their heads. Since my husbands passing I try to enjoy more out of life and live in the moment. I only work partial days and if the stress becomes to great I leave work. Thank goodness for an understanding boss.

I appreciate all the welcomes and look forward to talking with you all. I hope I can contribute some useful information some day!

thanks, Debbie

#10 Carol Lee

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Posted 15 August 2008 - 03:03 PM

Hello Debbie,

I too have been lurking about this forum since April when I was having such severe reflux and pain that I could not eat at all, was taking only liquids and ensure. I read all the posts on reflux and have got myself straightened out. We sure do have to count on ourselves because there are very few others that understand this disease. So welcome and I to would like to join this very helpful group also.

Carol L

#11 Sheryl

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Posted 15 August 2008 - 03:17 PM

Carol Lee, welcome to our forum. I am happy when others decide to stop lurking and join in on this wonderful group. Even though there are so many of us here, we still are very close to each other. Welcome aboard. I am happy to hear that you were able to get your reflux under control. Some times we have to be a bit forcefull with our doctors. Sometimes they have no idea how really bad our reflux can get. You will make many friends here.
Strength and Warmth,
Sheryl

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#12 nan

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Posted 15 August 2008 - 04:32 PM

Debbie,
Welcome to the forum! I am so sorry to know that you lost your husband. That must be horrible! My husband is my rock. I too have CREsT, Fibromyalgia, and Raynaud's. I am sorry to hear of your diagnosis. You have definitely come to the right place for support and information.
Take care of yourself,
Nan

#13 nan

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Posted 15 August 2008 - 04:36 PM

Welcome Carol Lee,
I am so glad you decided to join us. I too have GERD..YUCK!!!!!!!!!!!!! I am glad you were able to get yours under control.
Take care,
Nan

#14 Snowbird

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Posted 16 August 2008 - 08:30 AM

Hi Debbie

Just wanted to say hello and welcome too! I see the others have pretty much covered what I'de say too! I was also saddened to read about your husband's passing, I can only imagine how hard that must be on you. I hope you are doing ok and that you hang around with us too! :)
Sending good wishes your way!

#15 Sweet

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Posted 16 August 2008 - 01:42 PM

Debbie my Love, welcome!!!

I'm so glad you've joined us. You've come to the right place for information, understanding, support and good ole friendship.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#16 Peggy

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Posted 18 August 2008 - 11:24 AM

I just wanted to extend my welcome too. I am so, so sorry about the loss of your husband. I can only imagine how hard this must be for you. I congratulate you on being so strong and staying in the fight. With this disease each day can be a different one and I have found that it really challenges a person. My life has changed so dramatically since I got this disease I'm not the same person at all. There's nothing you can do but stay in the fight. You have come to the right place for good advice from very caring and special people. I don't know what I'd do without this site as when I have questions there's always someone who seems to know just what to say. I wish you all the best.

Warm hugs,

Peggy

#17 Debbie C

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Posted 18 August 2008 - 12:47 PM

Peggy and all of you, thank you for making me feel welcome. I have come to realize that we are our own advocates when it comes to this disease. I got this from reading the posts. From this site I have found a specialist in Milwaukee here and I actually was accepted, my appointment is in a couple of weeks. Hopefully this doctor will be better than my current rheumatologist!

Debbie

#18 canon

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Posted 18 August 2008 - 06:17 PM

Hi, I am new too and have been just looking around on the site for some time now. It looks like the folks here have this forum down to a science. Sorry to hear so much has happened to you and having problems with CREST. Sorry about your husband too.
A happy heart is good medicine.