Right after I was diagnosed, and before my decompression surgery, I was told about a book that could be very helpful. I bought the book and it had so much wonderful information in it. It really was helpful for me. The book is called Conquer Chiari. A Patient's Guide to the Chiari Malformation. It is by Rick Labuda. If you have Chiari, or know someone who does, I strongly recommend you get this book. There is even parts in there for the care givers who have to help and deal with those of us with Chiari. It is broke down to where if you do not have much time, you can read just one chapter. If you have more time, other chapters go into much more detail. The last chapter, Chapter 9, is called Conquering Chiari and it is where I am getting the 10 Steps to Conquering Chiari. The book goes into detail and explains each of the steps in more detail than I will do here. But, it is something that I am trying to do and remember every day. I do have Chiari. I am a Chiari Warrior. But, I do not want this disease to destroy my life. It is definitely a life changer, but I will win the fight. I know Chiari will eventually win the war, but I will fight it and win every battle along the way.
10 Steps to Conquering Chiari, as printed in Conquer Chiari: A Patient's Guide by Rick Labuda:
1. Move past the anger to acceptance
2. Prioritize & Focus
3. Be smart & creative
4. Live a healthy lifestyle
5. Stay active (don't give into fear)
6. Know when to push & when to ask for help
7. Pursue your dreams
8. Have faith, stay positive & find laughter where you can
9. Look to yourself, not others
10. Never give up, never give in
Some of these things are easier for me than others. Although I am still not allowed to do much, I am having a very hard time with #6. I don't ask for help very well and this has been the most difficult thing for me. I am going to also have problems with #2. I have always done a lot of things all at the same time. This will not work any longer. If I do too much, I can definitely feel it. Of course, this also falls over into #7 because it is going to be so much more difficult to finish my doctorate now. I will do it, I'm just not sure how long it will take.
This is an ongoing process. Some days I will be better than others. But, these are things I can strive for.
Friday, September 12, 2014
Wednesday, September 10, 2014
Chiari Awareness Month
September is Chiari Awareness month. What is sad, to me anyway, is that it is not recognized in all 50 states. Governor Perry signed a resolution declaring September 2014 an official Chiari Awareness month. There are several people working on trying to get a permanent resolution so every year September will be Chiari Awareness month. I understand that September is also Childhood Cancer Awareness, Prostate Cancer Awareness, Leukemia/Lymphoma Awareness and so many other things that need awareness as well. There is a part of me that feels somewhat guilty and then I remember that there is no reason to feel guilty. Chiari Malformation is just as important as the others. More people in the US are affected with Chiari than ALS and Huntington's combined. The number of people affected with Chiari is on level with those affected with MS. About 1 in 1,000 people have Chiari.
I have often wondered, since being diagnosed, why is it that no one has ever heard of Chiari unless they are affected. I've decided because no one "important" enough will talk about it. It isn't that someone that is high profile hasn't been diagnosed, they have, it is just they don't talk about it. Those of us with Chiari need someone that is high profile to talk about it. Roseanne Cash has it, but doesn't talk about it, George Clooney has it but doesn't talk about it (he just says his brain is falling down), Chris Dugan former NFL Player has it, but isn't vocal about it although he did give a wonderful motivational speech about having it about 6 years ago.. We need someone that is vocal about it more often. Without people being vocal, we will never have a cure. We will never have anything more than brain surgery. We will continue to have doctors accuse us of being drug pushers of being a hypochondriac and sometimes have complete strangers accuse you of having Munchausen Syndrome because you talk about Chiari.
It is definitely an uphill battle. One that one day I hope we will win. Unfortunately, right now, the future does not seem so bright.
In closing, here is the link for Chris Dugan's speech. It is about ten minutes long, but it is absolutely amazing. Chris Dugan Video
I have often wondered, since being diagnosed, why is it that no one has ever heard of Chiari unless they are affected. I've decided because no one "important" enough will talk about it. It isn't that someone that is high profile hasn't been diagnosed, they have, it is just they don't talk about it. Those of us with Chiari need someone that is high profile to talk about it. Roseanne Cash has it, but doesn't talk about it, George Clooney has it but doesn't talk about it (he just says his brain is falling down), Chris Dugan former NFL Player has it, but isn't vocal about it although he did give a wonderful motivational speech about having it about 6 years ago.. We need someone that is vocal about it more often. Without people being vocal, we will never have a cure. We will never have anything more than brain surgery. We will continue to have doctors accuse us of being drug pushers of being a hypochondriac and sometimes have complete strangers accuse you of having Munchausen Syndrome because you talk about Chiari.
It is definitely an uphill battle. One that one day I hope we will win. Unfortunately, right now, the future does not seem so bright.
In closing, here is the link for Chris Dugan's speech. It is about ten minutes long, but it is absolutely amazing. Chris Dugan Video
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