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