I must apologize to all of you I have
not been on for a while due to our illness as I have been fighting
with what should be a normal thing that we all do but my body is
fighting and not letting me go to the bather room. The beginning of
August after dealing with pain I still have and a CT scan they found
that I was blocked for over 3 months. Sadly I sit and nothing has
been done yet but I feel I need to let you all know I am still here
for all of you.
Lets get to the topic!!!!!
I've always wanted to be able to do
things with out issues or heartache. The challenges that most
Chiarians face in there life is overwhelming and not anything I would
wish on anyone. Even reading was hard for me to do as a child, being
able to understand things, being able to say what was in my mind or
the simpleness of a quite mind. I have always had to work hard and
some of the things like blocking out the car driving by, the air
coming on, the person talking in the next room and the computer
running as I can hear the lights on and the ringing in my ears as I
try to focus on what the person talking to me is saying. Just wanting
to be quite in my mind. Since my surgery and a lot of meditation I
have been able to control some of that but it is work. As we all know
we have to have energy and support to work and move on when you are
sick it can be every hard at times. Chiari is a silent disease and
when I say silent I mean too everyone but the Chiarian. I've asked my
husband time after time what he is thinking about and he says nothing
and at first I thought he was lying because my mind is always
thinking it never stops and somehow I still feel alone. Isn't that
funny.
I had my Chiari surgery 3 years ago, my
daughter had her Chiari surgery at 15 years old this year with Chiari
0 and my son at 9 years old has Chiari 1, we all have similar issues
and seizures. If I had one wish, One wish in my whole life it would
be we would all find a doctor that would listen to us, not tell us
what its like or how it is living with Chiari because we know we are
experts on that. I wish we all would have doctors that would listen
and then try to help and not let us go after surgery but keep us and
evolve with us. I wish we wear not singled out with all these
diagnose that all come back to Chiari. And if I can't have that I
wish that for every Chiari child in the world.
As I watch all of you
I am so happy to see the positive support you share with each other
and hope it spreads across our community.
Living with Chiari and not being
diagnosed is hard living with Chiari and being diagnosed is hard but
we move forward with each other. As the we look normal and well, we
learn not to assume, we learn to open our hearts to others, we learn
that even when it gets hard there is a lesson we learn that makes us
stronger so we can help someone else. We learn we are not alone and
Chiari is not rare it is miss-diagnosed. We learn to stop and smile
at the person who walks by that looks like they are having a bad day
because we have been there or are there. We evolve to welcome life
and enjoy each moment even with the pain. We grow with love and power
to stop and share our story because we are all important and most of
all we learn to enjoy the little things in life that might have past
us by.
Chiari is a hard disease as all are. As
you walk to your doctor or to the store the moments of realizing you
are sick or your child or love one is is hunting. The only thing we
want is to be apart of this life and love, laugh and be heard.
I've miss you all so much I send you
all my love and suppot.
This is written from my point of view
and is not from all Chiarian.
With all my love and support
Heather
Founder of Zipperheads for Chiari
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