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"I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next." Quiltfairy.

Community Status Updates



I'm always around here!
Aug 12 2012 10:41 PM
  • vfazfont's Photo
    That's great! I've attempted to post with no luck-is this where I should be posting it?
    Mar 19 2015 01:26 PM


Life's a ride!
Jul 26 2012 10:00 AM

Vee Mozzie

Newbie, 67 year old married woman, living in Sydney. Systemic Scleroderma with Crest diagnosed middle of 2007, with PAH.
Jan 17 2011 12:08 AM

queenie → chrisd

hi chris,
just wanted to wish you good luck with your treatment and I really hope you get good results keep me posted x queenie
Jan 12 2011 01:34 PM

chrisd → queenie

Hi Queenie...
Yep I totally understand the frustration...I can barely hold a pen, let alone sign something. I was at Costco the other day and paid by credit card..I felt like a moron trying to sign as I dropped the pen like 6 times. I am starting treatment on Monday so I'll let u know how it works...take care!...Chris
Jan 11 2011 11:28 AM

queenie → chrisd

hi chris,
just thought I'd drop you line as I totally understand what you mean about the hands not working thing and how frustrating it is. i used to design my own greeting cards but now I am unable to hold a pen in my hand for more than well seconds as the pain is unreal and the pins and needles begin to kick in.but hey we will find ways around these things ha ha
Jan 10 2011 12:07 PM


thnx everyone for taking the time to write. i have had a bad day today can't move hands to well at all and have a headache I just can't shake. i do not have a specialist doctor have seen rheumotligists but just been left to the care of my g.p have found a specialist through this site who is only half hour drive away so am going to contact him and see if he can help. will keep u posted x
Jan 09 2011 02:23 PM


Hi, I am sending a query for my mother who has lived with scleroderma for 40 years with mostly digestive system involvement. She is 81. For the last year she has felt like her body has been on fire. It has been getting progressively worse. Internal temp is always normal. She is miserable all the time from the heat, like a perpetual hot flash. Has anyone else heard of anything like this? thanks...
Jan 08 2011 09:25 AM


This is a picture of katie, only one on this computer at the mo but will update with more when get more pics on here.
Jan 07 2011 12:03 AM

mopsygirl → red

I had a nissen fundoplication and a hiatal hernia repair too!
Dec 10 2010 11:48 AM

Patty Arche-Hueck → NorthStarHope

Thanks for your message,i be thinking of you and your sister,is a blessing,to have someone by you when you are hurting,thanks
Nov 08 2010 11:57 AM

NorthStarHope → Patty Arche-Hueck

I love your post on the hugs around the world, that is one to be remembered!!
thank you,
northstarhope *
Nov 05 2010 02:17 AM

NorthStarHope → barefut

thank you barefut, that was very, very, touching.I will never forget it!!
tear in my eye! take care, sincerely,
Nov 04 2010 10:14 AM

NorthStarHope → Jeannie McClelland

I thought I would also share my stories with all of you. since my sisters battle with scleroderma, i am much more aware of it, actually I never new it exsisted before this. and now I want to learn all I can, and do everything I can do to make more people aware. And since my sisters illness I have learned of five others within the area that have scleroderma. i will continue makeing people aware...
Oct 15 2010 01:20 AM


Diagnosed with Limited/Crest Scleroderma 2007
Fibromyalgia, Livedo Reticularis, GERD, Raynauds, The RE in CREST
Oct 12 2010 04:30 PM