Want the world to know and help, maybe we should change how we do it!

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Posted by Elaine ( on December 04, 2001 at 09:36:09:

I just watched Good Morning America, and there was a 11 year old boy, Mattie Stepanic is his name. He was on the show and he has MS. He has spent most of his life in and out of the hospital. They asked him if he ever said “Why Me?” His answer was no he says “Why not me? He said better him than someone else. What a wonderful little boy. He has two books out of poems he wrote.
We all think we have it bad till we see someone like him. I just cried to think this boy has to suffer with MS. He lost three of his siblings from MS, but yet he believes in the power of prayer and gets up everyday and does something with his life even through the pain.
I been thinking a lot about clusters, since I am chronic I don’t have a lot of time to forget I have them. But after seeing this show it made me think.
We are out in the world trying to convince people that clusters is the worst pain in the world. That it is called suicide headaches. How do we know it’s the worst? I never had my arm cut off I never had MS…. There are so many things in this world that cause pain, what makes ours the WORST?
Maybe we are going about this all wrong. Maybe we would get better treatment and better coverage if we got off the suicide thing. If we got away from my pain is worst than yours. Todd hit his finger with a hammer the other day and as he held his hand and walked back and forth in the garage he said “I know clusters is suppose to be the worst pain in the world, right now I wouldn’t say that.” I have clusters and Migraines, when I have a cluster I say the pain is bad hurts like hell, when I have a migraine I say the same thing. Maybe we would get further at getting help if we just stuck to the facts that life is hard when we have clusters and it interferes with our life for three months out of every two years, and for chronics its takes away from our energy everyday. I think we would be more noticed and taken more seriously if we stopped the woe is me bit and got down to the facts that we just want some relief, we want the right drugs and we want the insurance companies to pay their part. We want Doctors to see us as people in pain. But not people who are dieing (cause we are not)! We want them to take us serious. We have a pain in our heads that hurts like a SOB. We want relief. We have to stop cussing doctors and educate them. But educate them in a way they know we are serious. Going to them telling them we want to kill ourselves because of the pain etc ...to someone who can not see the pain we look like nuts. Going in saying Doctor listen I have clusters and they are causing me time away from work, they are causing me problems at home, I can’t sleep cause of them. These things the doctor understands. Calling and writing Oprah, insurance companies...if you tell them you want to kill yourself because of cluster headaches, again they think you are nuts.
You all say Migrainers have help. Now you want help. How do you think they got help? It wasn’t yelling, “I want to kill myself”. They got the facts about the headaches and what it was doing to their lives at home and work, they pin pointed their pain. They pushed for help. We got to get together and get this help. Here on ch.com we get support from each other cause we know the pain. Here we can say sometimes I want to kill myself during the pain. But when getting the word out to people who do not know this pain and saying we want to kill ourselves makes us look nuts. Try put yourself in their shoes “What would you think” Would you give someone ten minutes on your talk show if you thought they was crazy. Don’t think so us unless you are Jerry Springer! You want to help yourself and others. Then pull out $25 and join O.U.C.H. better yet pull out $30 and both you and your supporter join O.U.C.H. then get on a committee and start working. If there is not a committee that suits your fancy…Then suggest a new committee …get together with cluster friends in your state every three months and come up with some ideas. You don’t have to get anyone’s permission to meet and talk. Do things on your own. To sum this up, cry ...vent here on ch.com…but when we fight for help fight like Mattie with the facts and with hope not helplessness …show people we are strong even with this pain. People don’t listen when you cry they listen when you stand up. So muster up all you have and stand up grit your teeth and fight standing up. If a 11 year old boy can write two books with MS. We can get people to hear us if we go about it right.

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