Sunday, July 1, 2012

So tired of being sick,



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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