hi trudy!

i'm so glad to hear from you!

this is exactly why i started the Scleroderma F+F group....there are
so many of us affected by the disease, we need support too! And
that's why i can't believe it has taken so long for me to get back on
board...what a moderator huh!

my mom is going to be 62 in August...and has SD (raynaud's/crest) for
20 1/2 years. my sister and i grew up with it, we knew nothing else...
then this past summer breast cancer was thrown into the pot. thigns
were crazy for a bit...but thank god she is cancer free, adn now it's
just the SD to contend with. my mom is very lucky. she has a great
dr. and she seems to be holding steady! right now we are waitng for
bloodwork that was repeated today...her potassium seemed low...so doc
wants to see if it was just the day or it's been low....

i also had a second mom...a neighbor...her daughter and i were the
same age, and we played together...when mom couldn't take us out
somewhere she always pitched in....but she was diagnosed with the
internal type of SD and she died while i was away at college...

and now i have a friend who is 18 and has all the sympotms of
Raynaud's/CREST...

this rare disease is becoming more common if you ask me....

my best advice for you...keep you chin up, and keep praying. god
never gives us more than we can handle. you seem like a very special
woman...taking the unfairness of life and making lemonade out of the
lemons...

i hope that the group will be active again...cause i know that htere
are more of us out there who some days wonder why this happens! and
we can help each other...

you and everyone are in my daily prayers...stay strong, and god bless!

Diane



--- In sclerodermafriendsandfamily@yahoogroups.com, trudy smith
<trudyrose0921@y...> wrote:
> hello diana thank you for the letter I was so intrigued that you
send me this letter. I am a caregiver and mother of my daughter who
has scleroderma and rhynauds.she is 30 and has 2 girls. I know it is
hard havin to go through all this but we are strong.You and I are
strong we both r lookin out for our moms. I took care of my mom for 10
yrs she got diagnosed with lung cancer and passed away in 2001 in my
arms. I will never forget that because i was the one she looked at me
with tears in her eyes and i told her i loved her then she went to
sleep. I am so grateful that she is now in gods hands and no longer in
pain. Now i go through missin my mom i loved her so much. I want you
to be strong. My daughter Jackie got diagnosed with scleroderma and
rhynauds 5 yrs ago. she didn't even know she had it. Now i have my
baby to think about she is the only child i had and it is very hard on
me Diane. Of course there is lots of anger. But that is part of the
process. I just wish it was me instead
> of my daughter.She was put on Chemo to see if it would help her she
had her last one at endin of Feb. Her lung compacity went up 3% but
she goes to Vancouver,B.C. to see if the chemo helped her. I hate this
why does it have to happen to good people and not bad. It really hurts
Diane. I have boyfriend who is also terminally ill. I love him so much
and he just told me he wants me to leave it is hard because i had 3
yrs with him. He said that my daughter comes first i know but why is
it that the 2 people I love is terminally ill. I am takin care of them
both just like my late mother. I love them. Well Diane thank you for
the e mail keep in touch because i need someone to talk to because i
don't have no support as I am doing this on my own. God bless you each
and every day and your mother. Take care now. Till then whenever you
see a red rose always think of me because that red rose is me. Bye for
now. Trudy Rose Smith mother of dauhter who has scleroderma and rhynauds.
>
> blue-eyes-1012 <no_reply@yahoogroups.com> wrote:hi everyone...not
sure if this was posted or emailed to you...so i
> wanted to send it out again! if it si a repeat sorry!
>
> D
>
>
> *************
> hi everyone!
>
> first let me begin by apologizing! i have not paid much attention to
> you and the group lately! life has a way off stirring up
> whirlwinds...and i had some trouble with my yahoo account...long
> story, but i couldn't log in for a long time....
>
> i've been working at the club site...i'm sorry that there were some
> negative...spam posts...i've erased them, and i think i've fixed it so
> it won't happen again...i also got rid of some bad links...did some
> maintaince...
>
> welcome to any new members that may have joined since i've been MIA...
>
> so, let's start fresh! i'm back...and hope i haven't offended to many
> of you!
>
> my mom (SD for 20 years) is doing well...i think the last time i was
> here was when we just found out she had stage 1 breast
> cancer....sigh...thank god that all went well...she had a masectomy,
> they watched her like a hawk, all is well....SD included...and is
> cancer free!! right now the only wrinkle she seems to be having is
> some low potassium...more blood work tomorrow...may have been just a
> fluke...
>
> so, i hope you are all well...and invite you all to post and "let me
> have it!" i really am so sorry...it's not like me to be gone for so
> long....lots happening....dealing with the breast cancer...my BIL is
> in iraq....and through a zillion other life events into the
> mix....sigh...don't mean to complain.....
>
> so....let me know how you all have been...how are the SDer's doing?
> actually...i have an 18 year old friend who has all the signs and
> symptoms of SD...waiting for final test results...she is scared...and
> freaked out...when things are confirmed...i may be asking for advice
> and support that i can pass along to her...
>
> hope that everything is going well, adn once again...i'm sooo sorry!
>
> diane (blue-eyes-1012)
>
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