When I was eighteen, twenty I was still a student at university. I didn't have any
worries and I didn't think about my future.
I just lived my present
which is one of the most beautiful gifts that life can give you. Then your life
changes.
My hand with cold became blue and then white - no pain.
My grandmother wanted me to go straight to the doctor to understand what was
that strange thing happening to me.
He wanted me to go to a specialist at the university hospital in Milan.
She said, you have to do this blood test.
When you get the diagnosis
you just hear systemic sclerosis
which are two bad, scary words. You think,
oh my god. What will my life be?
I really grew up and became an adult in that moment.
At the beginning I kept it all inside.
I am 43 years old, but sometimes I feel
as if I were 83 years old. Everything becomes difficult.
My bedroom is downstairs
and I have to come upstairs for breakfast.
These stairs are a little bit hard not only because of joints but also because of my
lungs.
I have a lung involvement since the very beginning and it got worse through the
years. I have also an involvement of my bowels.
It's not easy to talk about it. If you talk about your heart involvement or
your kidney involvement or lung
it's commonly accepted. But the intestine is always a taboo. When I go to my work
I have to stop in a bar because I have to go suddenly. So this affects my daily
life and also the pulmonary involvement.
I can't climb the mountains here where I live or make long walks. But I have my
car or I bought an electric bike - at the beginning I focused the attention on
what I couldn't do. So it was just an alibi to be sad. If I keep on focusing
on what I can't do
it's like putting your head against the wall
day after day. Now I said, okay, I can't do those things anymore and I try to find
out something else, something new.
My husband
always helped me focusing my attention on new things. He's my lover but also my best
friend.
So, when I say that I am positive it doesn't mean that I'm not realistic.
The situation is the same - what's changed is my point of view.
Life
is not the disease.
I live a beautiful life now,
a really beautiful life.