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Biomarker for Diffuse Scleroderma skin has been discovered!


Update on Toe


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#1 Guest_SADIE_*

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Posted 11 April 2008 - 04:32 AM

I just wanted to let you all know what has been going on. Last Sun nite, I became very sick so my parents called 911. I was taken to the hospital. Had alot of test done. I had a infection. My white blood cells had 47 percent infection in them. I was also dehydrated even though I get 120 oz of water each day through my feeding tube. We've been told by my doctors. to do that much water because my body doesn't absorb well. The ER dr. also said that the Scleroderma is progresing in my bowels and that area. So they kepted me overnite and did alot of blood work during the nite. I was released on Mon. nite. I was so glad to get home! My toe is doing alot better. I'm still pretty weak with diarrhea going on. It will get better.
Anyone else on here have problems with your body absorbing? I get 1800 some calories from the nutitrion. My body just absorbs enough to keep me alive. Also, does anyone get dehydrated alot? The doctors. don't know what to do. They just told us to keep doing what we're doing.

I'm starting to get pretty frustrated. It just seems like theres always something going on with this illness. I've had this for 18 years now you would think I wouldn't get frustrated anymore. Sorry to unload this on you guys.
Thanks for your support! It means so much to me! Sadie
BTW-I have Diffuse

#2 Cheryle

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Posted 11 April 2008 - 05:52 AM

Sadie,
Sorry to hear you had to go to the hospital, but glad you are home now and that your toe is better. I hope you regain your strength soon.

I have recently been diagnosed with CREST. I have esophagus problems and never had a problem with my bowels until March 1st , when I ended up in the ER & hospital for 3 days. I had severe vomiting and bloody diarrhea that brough my blood pressure very low..(my diastolic, the second number was only 36). THe next week I had a colonscopy, but they couldn't really tell what had happened. They called it colitis.

Have you had a feeding tube for a long time?

I'm glad you are sharing your frustration, it lets me know that I too can vent on this forum if I need to. :)
Cheryle

#3 Karenlee

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Posted 11 April 2008 - 09:54 AM

Sadie,

So glad to hear your toe is better!! :)

Dont ever apologize for unloading on us. We all do it and that's the point of having comrades on here.

Karen

#4 smac0719

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Posted 11 April 2008 - 11:36 AM

Sadie,

I wish I had more, but I don't have anything to offer except a kind word. I'm glad you're out of the hospital. You're in my thoughts!!

"We may encounter many defeats but we must not be defeated."
Maya Angelou
I may have Scleroderma, but Scleroderma doesn't have me!

#5 Guest_SADIE_*

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Posted 11 April 2008 - 12:52 PM

Thank you all for your kind words! I've had some rough times lately. Things will get better.
Cheryle, I've had a feeding tube for 2 1/2 years. now. I've been having dehrdration and absorbing problems for a long time. Before I had the feeding tube, I was 89 pds. Now, I'm 100 pds. I am 5' 10'.. My scleroderma is still progressing but I'm going to keep fighting this battle! Also, I have low blood pressure problems too so when I'm dehydrated , my BP drops very low. One time at a doctors. office I was dehydrated and got very ill and they couldn't get a BP for 15 min. so they called 911 and took me to the hospital.
Sadie

#6 Snowbird

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Posted 11 April 2008 - 02:31 PM

Hi Sadie

Glad to hear you are back home now and that your toe is doing better. It certainly is understandable that you can get frustrated with this disease, you wouldn't be human if you didn't...but it sounds to me like you are most definitely a trooper and you have a great inner strength! I hope that infection clears up quickly and that you feel better soon.
Sending good wishes your way!