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Biomarker for Diffuse Scleroderma skin has been discovered!


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19 replies to this topic

#1 Guest_Sadie_*

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Posted 25 June 2008 - 01:17 PM

Hi Everyone, Thank you all for your kind words! You guys are the best! Sheryl, you wondered why I needed sugar water along with my tube feedings? The problem is my body isn't hardly absorbing anything because of the condition my whole digestive tract is in and my doctors have all said it is going to get worse. The sugar water is to help keep me more comfortable. Plus, they now have me on Oxygen because of my lungs not being in good shape. Everything we do now is just to keep me more comfortable. PS-I am still on my tube feedings 24/7.

Sadie

#2 Sweet

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Posted 25 June 2008 - 01:45 PM

Hi Sadie!



Thanks for checking in. I think about you daily. I'm so glad they are taking such great care of you!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 25 June 2008 - 02:04 PM

Sadie, what's that you're holding in your picture? I can't make it out.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#4 Peggy

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Posted 25 June 2008 - 02:09 PM

It was great to hear from you! I think about you daily and hope that you are continue to be free of pain. I'm glad you are receiving such good care and more important I'm glad to hear from you! Please continue to take care of yourself and keep us posted on how you are doing.

Warm hugs,

Peggy

#5 debonair susie

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Posted 25 June 2008 - 02:45 PM

Hi Sadie,

It's so good to read another of your threads!

I'm glad you are being well cared for... the sugar water will help with yyour strength too, I imagine.

Relieved you are on oxygen so your body doesn't have to work so hard.

Hope all of this is helping you stay more comfortable.

Loving Hugs,

Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 nan

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Posted 25 June 2008 - 03:29 PM

Sadie,
I have been thinking of you daily. I was so happy to see this post. It sounds like you are getting great care!
Nan

#7 Snowbird

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Posted 25 June 2008 - 03:32 PM

Hey Sadie

Glad to hear from you :) . I hope they are still taking good care of you, it sounds like they are. It's so great that you keep checking on us ;) , you are always in our thoughts!
Sending good wishes your way!

#8 Lucy

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Posted 25 June 2008 - 04:17 PM

Hi Sadie,
I loved seeing your picture, it made me feel a little closer since I now knew what you looked like. It inspired me to figure out how to get my picture on there so all could see who I was. I could not figure it out - so I got my computer geek son to help me. As you will see I had to find a picture that included my pooch Fergy. He has been such great company to me while I have been sick. He very rarely leaves my side and when I lie on the couch he lies on my stomach and I steal his warmth. Glad to hear you are comfortable.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#9 truman

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Posted 25 June 2008 - 04:32 PM

Lucy:

So true about the pets. I'm grateful that I could be home 24/7 with my Truman before his death in February. He gave me so much love, joy, comfort and laughter. My new one Oliver, is a handful. He's a year and half old but is already learning he needs to tread slowly if mommy is up and walking. His previous owner must have sent him to "school" as he knows all the commands. He needs to understand the difference between outside and inside. He'll see a squirrel outside and thinks that magically if he jumps off the couch and races into the kitchen, he'll "get him". Only thing he's gotten so far is a bump on the head from sliding across the kitchen floor and into the wall.

Suzie girl, sounds like your finally pain free. Sending my love to you each and every day. I know KarenLee, you and I became buddies so quickly and I'm all the more benefiting from our friendship.

Linda
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It is what it is...........

#10 Sheryl

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Posted 25 June 2008 - 08:07 PM

Hey Sadie,
It was nice that you wrote to us. I am glad to hear that the sugar water is helping to keep you hydrated. I am glad you are getting all the extra treatments you need at this time. I hope the oxygen helps your body to not have to work so hard. Are you still able to sit up in a chair and be pushed around? I hope you are somewhat being moved about a few times daily. Keep us posted when you feel like you are up to it. We wait for you to write us about how you are. Thank you Sadie.
Strength and Warmth,
Sheryl

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#11 razz

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Posted 25 June 2008 - 09:02 PM

Suzie,

I think about you and wonder how you're doing. I'm glad you keep everyone posted because you've become a special person to everyone who knows you. What struck me the most about you when I first read your threads was your kind disposition and it never waivered. You personal messaged me when I was feeling down and for that I am grateful. I hope you're getting the royal treatment because you deserve it!!

Your friend,

Razz :)
Live well, Laugh often, Love much

#12 barefut

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Posted 25 June 2008 - 10:57 PM

Sadie~

Thanks for keeping us updated on you. What is your typical day like? What is the best part of your day?

#13 Karenlee

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Posted 26 June 2008 - 12:53 AM

Sadie,

So glad you posted, I was thinking about you a lot lately and wanted to know how you are doing. Glad to hear you're being cared for properly. If you're up for it at any time, we can do our "support trio" with me you and Linda.
Shellys been eating up a storm as usual. She spends a lot more time outside too now that the weather broke. And I have a suspicion that one of our neighbors is feeding her because she's getting awfully chunky Lol

Take care and keep us posted. We all love you!!!
Karen

#14 Sam

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Posted 26 June 2008 - 01:00 PM

Suzie Hello! It was nice chatting with you this morning. Sugar water huh, I have heard of that. Sam
Sam

#15 Guest_Sadie_*

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Posted 26 June 2008 - 01:24 PM

Thank you all for your sweet words to me! You guys are so special!
Shelly, that picture was taken during the holidays. I was holding a little Boyds bear that my nephews gave me. Sheryl, Yes,I still am able to
be transfered back and forth to each room in my chair. My parents push me. Sam, it was so good to chat with you this morning!
Suzi :)

#16 Bird Lady

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Posted 26 June 2008 - 02:06 PM

Sadie
"Thank you" for sharing your journey
You're In Our Thoughts
Birdman and Wife
Hugs for All,

Julie (Bird Lady)

#17 Margaret

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Posted 26 June 2008 - 02:39 PM

Hi Suzi ,

Thanks for the update. I'll keep you in my thoughts before bed tonight.

Take care, Everyone.
Margaret

#18 luvbnmom3

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Posted 28 June 2008 - 01:18 AM

Hi Sadie!

It sounds like you're in great hands over there. I have seen Hospice care in action a few times & they have always been the sweetest & most caring people. I am curious too as to what it is that you are holding, it looks like a little puppy!

#19 LisaBulman

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Posted 28 June 2008 - 03:43 AM

Sadie,
Thank you for posting your story and your updates. I think about you....

Hugs,
Lisa
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#20 Michelle2

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Posted 30 June 2008 - 10:47 AM

Sadie, thank you for sharing your journey with all of us. I am really glad you are pain free and getting great treatment with those wonderful people in Hospice. I think about you all the time.


big hugs to you!
Take care and stay warm,

Michelle