Hi all. My name is Lisa and I am 38 years old. I was diagnosed with
Raynauds when I was 21 years old. Four years later, the dreaded
Scleroderma appeared. What a change in lifestyle. My parents wrapt me in
cotton wool and I hated that. I even to this day pretend there is nothing
wrong with me. I thinks thats how I cope. I am under a wonderful
Rheumatologist in Newcastle, Sydney but still get very nervous going,
especially having those wonderful blood tests when they can't get any
blood out. I am on a lot of medication as you all probably are which makes
me so lethargic, tired and light headed, but I strive on.
The hardest decision in my life was deciding not to have a baby. I met a
wonderful man with 3 children who I adore and we decided the health risks
of me carrying a child and trying to look after a baby were far too great.
I hope I made the right decision but miss terribly not having a child of
my own.
I only recently learned that I had lung involvement which was like being
diagnosed all over again. Am I getting worse! But my specialist advised me
that I have probably had it all along. My previous specialist was too busy
talking about his life then figuring out what was going on with me. I am
so glad I moved to Newcastle to meet my wonderful doctor.
I don't know about anyone else but I feel not to be very sympathetic with
people that have minor problems. People who winge about having the flu or
a cold. I wish I could get something normal wrong with me. All my life I
have had nothing but rare problems. My mum and dad said that was because I
was unique.
My nanna (dad's mum) had a problem so my parents say. They use to have to
rub fat into her skin as it was so tight. Never diagnosed in those days.
My poor dad blames himself for my condition. I sometimes think why me, why
not my brother or sister?
Is anyone elses face covered in the broken capillaries. If so Prescriptive
makeup is fantastic. People tell me that my skin is flawless. If they only
knew what it really looked like.
Well that' my story. Please feel free to email me at any time. Hang in
there sufferers, you are not alone.
lkennedy@idl.net.au
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