don't have the disease, but I have recently
found out that my mother does. She is 54. I wanted to
share and ask a few questions. I'm probably violating
some E-protocol by posting this much, but I will
anyway.<br><br>My mother (hereafter referred to as Mama since
that's the name she likes) has always had "cold hands".
For 15 years, she has come in from the cold with
fingers that looked as if they had no blood in them at
all. We used to buy her mittens all the time. The
Germans had a monopoly on the kind with half-fingers, but
a removeable mitten covering, too. I bought 5 pairs
when I was on foreign study there. At least one pair
to match each of her outfits.<br><br>It used to be a
lottery to see who would get the job of rubbing the blood
back into her fingers after yardwork or shopping
trips. I remember standing next to her in the kitchen.
The oven was on 350 and open just a bit; warm air
rising to meet my hands, which were vigorously kneading
her icy fingers. <br><br>Reynaud's, I/we had come to
deal with. Then we learned about the Sjogren's. I
still say that the newsletter "The Moisture Seekers"
sounds like a post-apocalyptic movie, but the
information is good. I have a mental image of Mama's tear
ducts and tongue and intestines looking like the
Sahara. It's horrifying. When she's sad, she can't even
cry with tears. How can that be comforting? It's like
laughing without making noise. Part of crying is feeling
the tears and wiping them away to make room for more
and she can't even do that. <br><br>As you can see,
we're moving towards CREST/SD. The esophageal
disfunction has begun in the last year. My family is
rearranging their eating schedule to cope. I'm happy for
that. It's probably healthier to eat big at lunch
anyway.<br><br>SD is the newest dx. I'm 24. Mama is 54 and I
haven't a clue as to what is going to be ahead of her and
us in the years to come.<br><br>I'm a fairly verbal
guy. This message should be proof enough. I can't seem
to talk to Mama about this, though. How do I bring
up the issue? It's not like lung cancer - stop
smoking. I can't ask, "How's the chemo?" She has no
answers about her disease and the only question for which
she has an answer is "How are you feeling?" and I
don't know that I can handle the possibility of hearing
"Worse."<br><br>Anything anyone could do to teach me how to comfort her
and show her that I care about this disease's effect
on her would be most gratefully
appreciated.<br><br>Thank you and good luck to everyone in your daily
struggle with this cruel disease.