Friday, July 31, 2009

Here we go Utah Chiarians

I expect that we will be seeing a lot of growth on this site over the next few weeks. Guys - we are going to miss the walk this year. Possibly! I'm going to check into that this week.

Okay - here's the thing. Today I am writing the "Proclamation" for the State of Utah. I also am going to call the State Governors office and begin the process of getting this proclamation signed. As the group grows and I am getting active comments from the group we will be making plans to get to the State Capital all of us together and as many news and television stations as we can get there and we are all going to sign this "Proclamation" together. My hopes are to have at least 30 people with Chiari there. I'd even love to see the signiture of little chiari hands on there. This "Proclamation" for Utah is going to be a BIG, HUGELY BIG help for every one of us. It will open awareness and make it easier for applications for Medicare, and Social Security Disability to be accepted. It will help many of us get the Handicapped stickers on our liscence plates easier. It's going to unite the medical community with US as they realize that WE must and will fight to get the best care.

I'm a born fighter guys. The reason I am doing this is because I haven't had to go through all that I have. IF I can keep any of you from going through what I have and am going through. I honestly will be happy. I could die feeling like I left each of you in a better situation.

If WE cannot get the walk organized for this year. OUR next big step is our organizing support groups. "I" don't like all the "I's" in this post. But - time is running out and things need to get going. The reason I don't like the "I's" is this isn't my battle to be fought alone. It's something that WE need to do together. I need an active commitee around me so things will go much better. If I do this along than Utah will not become the best Chiari supported state in the Nation. That's what I want it to be.

I have a lot of goals! I've had to give up a lot of goals because of Chiari. And a whole lot of dreams too. CHIARI DOES THAT! I know I"m not alone. Chiari can't take these goals away. We can't let it.

"I have Chiari, BUT Chiari doesn't have me" that's my " " - I will NEVER LET IT! I wont let it get you either! God Bless ya'all!



Erin said...

Let us know what we can do to help, I would love to walk for Chiari, so would my son Blake, his brother, and my husband. I'm in law school full-time so I'm home all day. If you need some help making calls, etc. Please let us know. I know we are not the only members that would be willing to help. Just let us know where and how we can lend a hand.

Kelly Morrill said...

Erin, That my friend is a welcome relief. Please call me - because I need help. We NEED to do a walk. This is a whole new and as far as I can find the only efforts being made by anyone to help those of us with Chiari/SM. We need to start finding and building the funding for the group I hope to soon see become an organization. Please call me 801-643-6193. Thank you for posting the comment. Kelly

LuvMnky said...

Hi Kelly,
My name is Charla Allen and I have Chiari and Syringomyelia. I just found this website; I was referred to it by a new friend who also has Chiari. I can't tell you what a relief it is for me to find something like this. I was diagnosed with Chiari and Syringomyelia in January 2007, after a year of goose chases and being misdiagnosed. I had decompression surgery in March of 2007, but I am still dealing with chronic pain caused by nerve damage, which was the result of the syrinxes. I realize I have it a lot easier than many other people with Chiari, but it has still changed my life...and me. And it's hard not knowing or having anyone else in my life who understands what this is about. Until now. I want to be a part of this group, and I would like to help out anyway I can. We all need each other. You can contact me via email at I can give you additional contact information from there. Thank you so much for doing what you're doing. I can't wait to get involved!
Sincerely, Charla Allen