Thursday, November 21, 2013

my struggles....

I spoke earlier that my last meeting was back in August, and we had Dr Stetson at our meeting... its meetings like that, that reminds me why I keep doing what I do. I have been struggling a lot lately with if I should even be involved as much as I am with Chiari stuff. I didn't have a meeting in September or October, to big reasons were that we were moving, and my brother was getting married. My next meeting is Nov. 30th, which is going to be a great meeting for whoever is "new" to this whole journey. It's going to be on the basics of Chiari... like terminology, looking at MRIs... things like that. In some of the groups I am in we will through out abbreviations like CM, SM, RO, BI TC, OTC... the list goes on and on.... and even though we know what it means, and we type like that because its faster... we forget about the newer patients and parents. So, since in our Oklahoma group there has been many new patients since I started the chapter... I have decided to give a fast track course in chiari and its related conditions.
Anyways... since I have not given a meeting... I have really enjoyed the time away from it all. Its really true, when things are good... why look back. This is what it really comes down to.... if I am not affiliated with a non profit backed by a medical advisory board.... then I cant help or get the doctors in our community to listen to us. Sometimes I wish we could just be "Chiari Friends of Oklahoma"... and we are not with any non profit.

Right before October, I watch a documentary called Pink Inc.  (you can see this on Netflix)... and it really made me think about non profits (in general). All though the film was dealing with breast cancer organizations.... and NONE of the chiari ones even comes close to that big of organizations.... it just started making me think what I "wanted" to do a long time ago when Kay was diagnosed. Which always leads back to where I still want to be.... better educating OK medical professions, and helping the ones here that financially cant do it. I want to show them... the resources that can help you, or even help them in their fundraisers. I will probably Never do a walk or 5K, or and financial awareness here.... I guess because I rather that $200 or $2,000 I would raise go to the child's parents or adult that cant pay for that MRI they need, or to help them travel for better treatment.

I was recently approached by a group of high school girls that are working on a community awareness project for their nursing program. They had gotten my name because one of the girl's moms works at Kaylie's school, and had seen the bracelets for Kaylie.... they wanted to help spread awareness for Chiari and raise funds for Kaylie as their project. I was so appreciative of the offer.... but told them that we were fine with Kaylie's medical bills.... but if they want to still raise money for the organization I was with OR I knew several patients in Oklahoma that could use that support, they could. I was so happy when the choose to help another patient.... and what's even better is they picked one of their own peers. A girl that goes to one of the high schools, that one of them goes to. I love how this whole project will spread awareness about chiari, financially help this family get better treatment for their daughter, and teach her school and peers of her school whats really going on. In time I will feel you in more on this whole project.
I guess I just need to find a happy balance between living a regular life (meaning not always focused on chiari and worried about patients I get attached too), and still doing what I want to do for our chiari community.

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