Thursday, July 30, 2009

Great news for Chiari! Thank you to a fellow Texas Representative Kay Granger!!

July 27, 2009 --

We are excited to announce that Conquer Chiari has achieved a major
milestone in our fight against Chiari.

Specifically, through a lobbying effort, we were successful in getting the
US House of Representatives to focus on Chiari research in the recently
approved Labor, Health, and Education Appropriations bill (H3293). The
language, which appears in the House Report accompanying the bill (HR
111-220), directs the NIH as follows:

"Chiari - The Committee recognizes that a research conference titled
''Chiari Malformation: State of the Research and New Directions'' was
convened in November 2008 to identify the current state of knowledge and to
identify key areas of research. The Committee encourages aggressive measures
toward implementing these recommendations, including but not limited to:
using advanced engineering and imaging analysis to develop an objective
diagnostic test for symptomatic Chiari, understanding the genetic basis of
Chiari, and increasing focus on pediatric patients including symptoms,
optimal treatments, and quality of life issues. The Committee requests NINDS
to submit a report to the Committees on Appropriations of the House of
Representatives and the Senate by April 30, 2010 detailing its progress."

The legislative language is an extension of the work Conquer Chiari did in
organizing and getting NIH funding for the research conference held in Nov.,

We believe that if passed by the Senate and turned into law, this will
translate into significant funding of Chiari research by the NIH. Although
there are no guarantees, we are hopeful, and working towards, the Senate
adopting the same language.

The Chiari community owes a debt of gratitude to Rep. Granger, Rep, Lowey,
and their staffs for making this happen. If you live in their districts (NY
and Texas), please consider sending an email of thanks to their offices.

You can see the actual House Report 111-220 here:

The Chiari language is on Page 120.

Rick Labuda, Executive Director

Conquer Chiari

Wednesday, April 29, 2009

This weather!

I have had a daily headache thanks to the darn weather! I was doing great and then BAM! I am so tired of the rain. As soon and the barometric pressure starts to fluctuate my headaches go through the roof!

I have started seeing a chiropractor who actually knows what ACM1 is! I am so excited! He does nothing around my neck area but I am hoping that the adjustments with help with blood flow to my brain!

I can say that have ACM1 does give me one thing to be thankful for taking a concoction of medications daily and one of the side effects (among many) is weight loss! As my coworkers left today to go to Weight Watchers and I pray I never have to do that again. I have struggled with my weight and now I don't have to. It just fall off (30lbs to be exact!) Thank you Topamax! Oh yeah thank you for also making cokes taste fun and my hands feeling tingly and numb but you are working on keeping my headaches to a minimum so that is my true THANK YOU!!

Thursday, April 2, 2009

Such a blessing!

Yesterday I went for my 6 month check-up and I am doing really well. And I just had to rejoice. I think we have found a plan that works. I am just maintaining. Sure I get headaches but they are minor compared to what they used to be. I know what my triggers are and that is great! Also he said it was ok if I just wanted to take Excedrin instead of the prescription pain medicine. His only concern was reflux so he wanted me to start a 14 regime of Prilosec. I can handle that. What a great visit!!

Friday, January 23, 2009

I could be so much worse...

"There is always a light at the end of the tunnel."
"The glass is half full."
"There are always those who are less fortunate than you"

All of these are sayings that you hear almost daily, at least weekly. And I received and email today that really hit home... I am super thankful that my Chiari doesn't cause me to be this bad!!

Thank goodness things are better for him and right now me! God it good!

Monday, January 12, 2009

Feeling AWFUL

So I know it has been FOREVER since I have written, but I have been feeling ok lately. Not the greatest at times but a headache here or there was manageable. But I have litearlly been coughing with this sinus CRAP since November and I can't take it anymore.

We all know that coughing is like the worse thing for anyone with ACM. Well I have been coughing so hard that I literally choke and almost throw up. In fact a I threw up in my hand not too long ago. I cough all the time. I am MISERABLE. It is like there is one piece of phlegm just stuck in my throat torturing me.

I slept on the couch last night in the hopes of not coughing, well not only did that not work I also got a crick in my neck, so now I have an even worse headache NICE!!!

Someone please save me from this misery!!!!!!!!!