I'm not one to make resolutions per say, but this year I decided to get that "fresh perspective" on myself, so I really started to look at things in my life. I realized that a core problem I have is following through with things. It's always been a problem area for me and I know it's not something that's going to change overnight, but I'm really going to make it a goal for myself to be better at following through on things.
So, that being said, I've told my story of having Chiari Malformation and frankly I'm sick of it. The whole damn thing. I've met some awesome people who also have it, and unfortunately there just isn't a whole lot of light shed on it in this area. It seems that the only people who know about it are the people who have it, and when they're diagnosed they have no idea what it is. They're only taught what their particular doctor tells them which is usually very little because not many physician's specialize in this particular disease.
There is a Chiari Institute which is where the experts are, but it's in Great Neck, NY so if you're not living close to it, or have an insurance that will cover your cost of going there, your pretty much out of luck.
Fortunately, there is a whole other world out there of "Chiarian's" which is what people who suffer from Chiari Malformation affectionately call themselves. There are a ton of support groups out there both online and some in person, but it varies by area.
Last year, I was lucky enough to be able to set one up in my area and I'm so excited to say that we have 26 members which is a lot in my eyes considering I was diagnosed 8 years ago and I met my first fellow Chiarian last year. Now I have met literally hundreds online and a handful of wonderful people face to face, and it has made a world of difference.
I see Chiari in a whole new way, and 2015 is going to be a banner year, I am making sure of that. I am hoping to get Chiari awareness spread all over my area so that when people ask "what is Chiari?" a fellow Chiarian may not have to answer, but a supporter may be able to. Chiari is a debilitating disease, and there is no cure, except surgery, and that in itself really isn't a cure, it may help with the symptoms, but brain surgery is a pretty drastic measure to alleviate symptoms if you ask me. Not all Chiari's are operable, and some Chiari's can be fatal. Certain types are fatal, no question about it.
Chiari has a no outside look to it. No one looks different on the outside unless the surgery was done in which case all anyone can see is a scar. Often times it will resemble a zipper from the base of the neck up to the middle of the skull and then the "Chiarian" is now called a "Zipperhead" nice aren't we?! Brain surgery is rough. It hurts, it's so scary, and the possibilities of errors and infections are endless.
However, Chiari is not recognized in NY state nor is it considered "disabling" so sometimes it's damn near impossible to get disability unless you have every doctor, lawyer, judge, witness, etc. on board and even then you may get denied. I am hoping that with a lot of support and marketing Chiari awareness all over the place, we can finally get Chiari recognized, but we'll need the numbers.
This is where we need support. Support from fellow Chiarian's, support from our families, friends, co-workers, and communities. Sometimes we just can't function. Sometimes the pain is just too much to bear. But with the support of our loved ones, we can make it through. For 2015 I am challenging people to get educated about this disease, learn how you can help those who have it. While there is no exact number of how many people are diagnosed with Chiari per year, due to more advanced testing, the number of people becoming diagnosed with Chiari has been rising every year. Numbers are estimating between 300,000 to 500,000 per year. Empower yourself with knowledge about Chiari. Help yourself, help others. Get a new outlook for 2015, get a new perspective. Thank you for reading. <3
Have a Healthy 2015!
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