Why I started Zipperheads for family and loved ones as well as Chiarians and Zipperheads.

When I was going into surgery in 09 I had a team of friends and we wear looking at starting a foundation, I choose not to do a foundation and start a support group because I wanted our message to not get lost with money involved. To be honest with you all after surgery I forgot about the support group for a few months and was very surprised I had followers. At first is was suppose to be a support group for Chiarians and Zipperheads. We named our support group Zipperheads for Chiari because of the scar we are left with and I had a hard time with my scar and wanted to face my fear head on.

 It was not until about 6 months I believe until I realized how much it effected not only my family but also my loved ones and friends. What I was not expecting was so many friends and family that stopped supporting us after my surgery. That is a very big one to swallow and still have a hard time with it.

 I have a very good friend that came to our house months after my surgery he was stand-offish and so me being me I asked him to talk to me about it. In short I found out that one of our dearest friends had a very hard time not knowing what to do to support us and how scared he was about losing me. It was a conversation I will never forget because for him I opened Zipperheads for Chiari to all that are effected by Chiari. It suddenly did not become all about my illness but also about the loved ones suffering too. 

Where do they go for support? 

What do they do for us?

 How do they help us?

 How do you sit by and let something take over our dear one and you can do nothing? 

And watch as there is no escaping!

Chiari is a very hard disease because most of the time we as Chiarians do not understand what is going on and our doctors are not up to date with the new research. Researching Chiari on the net almost seems like a joke unless you know where to go and it is very scarey. Our loved ones seem to think they can not come to us for support , I at less would love it. We feel so left out most of the time this is something we can bond with and understand each other. I would not recommend playing the “well how do you think I feel game”. That goes no where. 

There are many things our loved ones can do for us but the most important is to treat us as a person and also remember even though we may not look sick we are. I have a very good friend that gets me out of the house a few times a month and I look forward to the drive, we laugh, sing, talk and just have fun! The biggest thing we want is not to be left. You can help us by being there for us and letting us be there for you, we will always have stuff going on in our world its nice to focus on something else. There is nothing a person can do for a Chiarian to improve on there life but there doctor and the Chiarians mind set. We just want to be our self’s and if you loved us before we were diagnosed well you loved us when we had Chiari you just did not know it so the only thing that has changed is somethings we can't do, some of us have had brain surgery and we now know we are sick BUT we are still the same person just growing hopefully for the better! 

There is no cure for Chiari and that sucks I have a question for all the family and loved ones does it matter? Would you hang out with us more if there was a cure or love us more? Would you come by more or invite us to more parties?

 I started before being diagnosed with my house full of friends and always being around people, now I'm lucky to see a friend a week. I have family that will not support my children and I during our illness and have lost many friends and still are losing them. It hurts, that hurt does not go away. I do know who my real friends are and who really cares and I am so lucky. It may seem I'm bitching or complaining but I'm not I'm just explaining how it has been for us the past 3 years.

 I want to say this from all my love, I understand it is not fun to listen to us being sick and it not ending, Imagine how it is for us! To all my Chiarians and Zipperheads we need to just keep rollin forward learn and keep going. Zipperheads for Chiari is for all and we made it that way so we could support with love everyone. The loved ones that have been there for us thank you so much you have no idea what you have done for us, we love you all so much. 

You truly are shinning stars in our life!

This is a page from my experience I am not talking for all Chiarians. I am speaking from my heart and not in any way trying to hurt anyone. I love you all with all my support.

 Heather founder of Zipperheads for Chiari.