As most of you know being sick is not
something that you choose to be although we seem to be blamed for it.
I try to rap my mind around how it is not to feel bad but its been so
long long I can't. Chiari is one of those disease that you feel good
enough to function and then “BAM” your hit. Crashed down for a
week or a few days. Most don't understand that most of us have had
side effects from Chiari our whole life (at less I have) with
something holding us down and even though having a name to put it on
it only helps in the beginning. A finder binder, a bump, a fall, a
jurk the wrong way can put us in so much pain. It is so hard to keep
reminding people we are sick. I don't want to be sick I'm tired of
it.
As we keep moving and working on
ourselves we still have our bad days and they need to be talked
about, not a bitch fest but talk about. Today I'm gona talk about
just that. So please bare with me if its not as positive as normal. I
have lost to many friends and sacrificed so much because of Chiari
that it is overwhelming. I'm not depressed or sad I have Chiari,
Chiari has made me stronger and more loving more understanding to
those ill. Like other Chiarians it's not just Chiari we deal with
it's a mound of illnesses that effect us every day. And even though
we walk with our head high it's not easy.
I am 35 years old and I can not clean
my house. I can not drive, I can not do many things. I constantly
have to hold back and remember that others that are ill are not in my
place and I need to understand that, but as I sit and watch others
get more understanding of there illness it is hard. All because
Chiari is not know to the population. I often feel my body is at war
with me and struggle to keep up. You all know what I say “If I
feel this way how many of you feel this way”?
In many ways I am blessed I am very
loved with my family I have, the friends that have stood by my side
and you, all of you. So what do we do?
Most days I will not let it knock me
down, I learn what I need too and move forward. I find the gaps and
try and fill them. I turn my hate into love because in the end it
only hurts me physically. It is not easy and very hard too do on the
days that will not let up. So we need to reach out stay close and
become one.
Zipperheads has now been up for 3 years
and as I wright this I think of all who we have helped and when I say
“we” I mean all of us you and me. So this is my advice. Do what
makes you happy, live life the way you want to and can. Enjoy the
small things that come to you and thank it. I'm not a survivor I am a
person that lives with a disease that just keeps-on-keepin-on. And
even the bad days I know I am not alone and we are out there sharing
our stories and loving each other, embracing the the new and loving
the ones we already know.
To our family and friends thank you for
being there for us, please be patient with us as we try to hold the
sand in our hands sometimes the sand falls too fast and as we know it
is hard on you we try so hard to be strong so you don't make you
suffer also because it hurts us so much to watch you in pain. But
please remember we will always be holding at less some sand to share
with you with love.
My loving Zipperhead family you are
never alone we are always here for you. This was written buy the
founder of Zipperhead for Chiari Heather. I write this from my own
experiences. If you have a medical issue please call 911 or your
doctor.
I love you all with support always.
Heather
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