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Updated Story: Kristen: Diffuse Scleroderma


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#1 Judy Devlin

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Posted 26 October 2007 - 04:53 AM

(Update) Kristen: Diffuse Scleroderma I didn't think that I would make it through even the first five years. If you read the medical books, they are all full of doom and gloom. But, hey, here I am...
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network

#2 TJ903

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Posted 26 October 2007 - 01:38 PM

Thank you for your posting! I was diagnosed Jan. 4, 2007 with Diffuse Sclero, a very fast and aggresive form. I'm currently having a flare-up and to hear that you are at five years gives me hope. Do you have a lot of skin involvement? I do, mostly my whole body, some lung involvement, GERD, and just now some heart and kidney (minor at this point) problems.

How did you manage to cope? That is my biggest challenge... trying to remain positive for my husband. He's the greatest, but does not let me see how worried he is. He won't ask for help or talk with anyone and I worry most about him. Are you married and do you have any advice that I might employ discreetly?

I usually don't post, but always review the forums for more information.

Again, thank you for your post. You made my day!

My thoughts are with you -TJ

#3 KristenS

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Posted 29 October 2007 - 05:27 AM

Hi, I just noticed your note, sorry that I didn't write back sooner. I have the same type, I thought it was CREST, but it is the same. It involves everything. Right now, I have problems with swallowing and even talking. My husband is very similar as he doesn't talk about it or he will say things like "don't read into it". You know when it is SD. If I don't take my meds for acid reflux regularly, forget it, food won't go down at all! And my chest burns. And the other not so new thing is I have a infection in the cartiladge in my rib cage. It won't go away with antibiotics so I have to live with it. It unfortunately feels like a heartattack! So, in case I have a heartattack, I won't know it! HA! My hands are a mess, my kids make fun of them from time to time as they are clawed. And I have been getting these odd moles, just popping up, don't know what they mean, should ask my doctor I guess, maybe not either. I am good at that one. I think that is how I got so far. I tend to ignore a bunch. There is alot I don't tell my doctor as I know he would do tons of tests, we only live once and do I want to spend my life in the doctors office, well no! If it truly hurts than yes, I will tell him, but otherwise, no.
If you had asked me 5 years ago if I was going to be here, I would have told you no. If you had asked my doctor the same, he would have probably told you no as well. I have been blessed. My SD was that bad at the time! E-mail me anytime.
I hope that your day goes well and you don't have any worries.

#4 Margaret

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Posted 29 October 2007 - 03:13 PM

<<If I don't take my meds for acid reflux regularly, forget it, food won't go down at all! And my chest burns. And the other not so new thing is I have a infection in the cartiladge in my rib cage. It won't go away with antibiotics so I have to live with it. It unfortunately feels like a heartattack! So, in case I have a heartattack, I won't know it! HA! >>

Hi Kristen ,

Has your doctor r/o esophageal spasms and have you tried nitro tablets. They really helped Gareth when his 'heart' was hurting.

Take care, Everyone.
Margaret