Mom working to raise awareness

http://tonawanda-news.com/feature/x627001221/Local-woman-leads-charge-against-neurological-condition

Concourchiari.org is another good site

The above link will take you to a story about a mom that started having symptoms in pregnancy and now has organized a Chiari Walk to raise awareness. She has also gained some government funding for Chiari awareness. A major problems is that medical professionals know nothing about it. How are Chiarians supposed to get help when there doctor's know nothing about it? The average time is 5 years for a diagnosis. She is hoping to shorten that time to 2 years. Still too long but better. When I look back, I have been suffering since I was 16. I was even hospitalized @21 for 4 days. Then every year, it seems, I am tested for things like lupus, lime disease, and other auto-immune diseases. When I was in nursing school, I remember coming home on the weekends and practically sleeping through the entire weekend and my joints hurt so bad. Then working nights clouded my aches and sleepiness too. Several times, I asked doctors about it but they blew it off, "You are doing too much" or "Get more rest". The problems was, no matter how much sleep I got, I was NEVER RESTED. I am a "glass half full" kind of girl and nothing is going to get me down so I just kept pushing forward. Nausea has always been a problems for me. It was really bad when we went on a cruise in March. Now, looking back, I was on the downhill slide to the "big episode" and being hospitalized for meningitis. And headaches have always been a part of my life. I have NEVER known a life without them. But, I just took Tylenol or Advil and worked my way through school and work. Oh, and both of my pregnancies were horrendous! I can not even imagine going through that again. The "normal" morning sickness never went away. I also had the pain in my neck and what I thought was sciatica. Again, blow it off to pregnancy. I never understood how someone could "love" being pregnant. But now I know why, I was sick!

The bright side to all this! My sister and I got me into the Chiari Institute really quick. I have been unable to work since 4-29-10 when I had a sudden onset of headache and inability to speak and word find which was preceded by approximately 4 hours of chills and puniness. So hopefully, my "down time" will be limited thanks to my sister and my pushiness. So from April to November (hopeful surgery date), approximately 7 months. Way faster than most. I can not even imagine if I would have had to wait for Dr referrals. That would have been so frustrating and devastating..... If anyone is reading this and needs help completing paperwork or questions, feel free to email me. I would be happy to help you. Even if you just need moral support, this can be difficult. A doctor telling you nothing is wrong, when something is clearly neurologically wrong.....Is so hard. The sad thing is, instead of saying "I am not sure, lets get you to someone that can help." The medical profession may say something like, "The mind is a powerful thing" or "You have Anxiety". Those are exact quotes that I heard. I am sorry, just because a doctor does not know what the problem is, it does not make the problem a mental issue. I read a statistic that 57% of Chiarians are diagnosed with a mental condition before correctly diagnosed with Chiari. Don't give up! I am willing to help!