hi debby!

welcome...you are not the only SDer here! we welcome all of you!
there are no intruders here! (well, except the guy i kicked off a
long time ago for posting an ad!! hehehe!) thanks for sharing your
story...and thanks for the tip on my e-mail link! and a really big
thank you for giving me the address for the other site...i couldn't
find it...i belong...belonged to the other one before we were switched
to groups...and after everything got switched around i lost them...so
thanks for the updated URL! i don't have SD but enjoy that group
too...amiee is wonderful and such a help!

have a great day....
Diane


--- In sclerodermafriendsandfamily@y..., dynamicdebz <no_reply@y...>
wrote:
> Hi all:
> I don't think i've posted a message on here before as i feel like an
> intruder, as i am not a relative or friend of someone with
> scleroderma. I have scleroderma (CREST), I also have a positive ANA.
> I read your story, blue-eyes on your website but for some reason the
> email link wouldn't work, hence this message.
> I am 35 with 3 children (2 boys aged 15 & 17 & a girl aged 3) & was
> diagnosed about 5 years ago when i had one cold finger. Since then it
> appears that every illness or symptom i've had in the last 10-15
> years has been CREST related.
> When i was diagnosed i didn't understand it, it wasn't explained to
> me properly, i thought i would just get cold fingers now & then & the
> occasional ulcer on my fingers.
> How wrong i was!
> If you met me you would see me as a perfectly normal woman, i can
> walk & talk & don't have any disabilities that show on the outside.
> However i have some kind of ache or pain every day. I had to stop
> studying law because i couldn't keep up with the written work due to
> pains in my wrist. I have almost given up hope of ever working again
> & i also worry if i will be able to look after my daughter properly
> in years to come.
> My worst symptoms are my stomach & bowels, I have a hiatus hernia,
> acid reflux & also some sort of spasmodic pain that is under
> investigation & i daren't go too far away from a toilet.
> I may sound a bit dismal about my condition but i am actually the
> sort of person who looks on the bright side of matters & am just
> letting off a bit of steam.
> I would like to say that each & every one of you, who are members of
> this group must be lovely people to support your friends & family in
> the way that you do.
> Most of my family even my partner do not understand this disease,
> they take no notice of the information i give or tell them. I don't
> think its that they don't love or care for me, its just hard for them
> to understand why one day i can walk a mile, clean my home from top
> to bottom & do a bit of gardening, then the next day i have trouble
> even getting out of bed, i think they just think i'm lazy sometimes
> but i wish i was!
> I have support on the other yahoo group which i joined recently that
> is for sufferers "http://groups.yahoo.com/group/sclerodermasupport2".
> Anyway god bless you all!
> Debby
>
>
>
> --- In sclerodermafriendsandfamily@y..., blue-eyes-1012
> <no_reply@y...> wrote:
> > hi sarah...
> >
> > good to have you with us!
> > My mom has SD Raynaud's / CREST, has for 18 1/2 years.
> > you can read my personal story on my web page...
> > http://www.geocities.com/blue+eyes+1012
> > just click on the SD link.
> >
> > I hope you all know that i'm no expert on the disease...and that i
> > created the club/group for us...family and friends....to have a
> place
> > to help each other! i try to post new things, sites that might help
> > etc...and i invite you all to do the same....we can beat this with
> all
> > of us working together!
> >
> > have a great day...and will talk to you all soon...
> >
> > (does anyone else have any times good for chatting? all i have
> gotten
> > are evenings....anyting else? i'll wrok on this......)
> >
> > Diane
> >
> >
> > --- In sclerodermafriendsandfamily@y..., sarah_blackstaffe
> > <no_reply@y...> wrote:
> > > Hi
> > >
> > > My sister has just been diagnosed as having Scleroderma along
> with
> > > Raynauds disease. It has been a pretty scary time for all of us
> > > lately and it would be great to hear from others who have family
> with
> > > this.
> > >
> > > Thanks
> > > Sarah