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Topic: Long, long, long shot, but...... (Read 389 times) |
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Little Deb
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Long, long, long shot, but......
« on: Dec 1st, 2003, 11:07pm » |
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I was inspired to get on the band wagon and see if someone would listen to our plight for help. Of all people, I chose Ellen. I hear her new show is great. Yeah, she does comedy. But what the hell. It seems to be a laughing matter to those who don't understand sometimes. It's just a headache. Women don't get clusters...ya da ya da. So anyway, I sent her the following message. She claims she reads her mail. I will let you know in the unlikely event I get any response. 
PFD's to all of you.
"Ellen,
My fellow sufferers and I are desparate to educate the world about the hell we suffer. We are the approximately 1% of the world that suffers from Cluster Headaches. We are tired of being treated like drug seekers, being called "liars" from our employers, whiners from our friends, and "migraine sufferers" from uneducated physicians. Our affliction has not yet been declared a disease. Insurance companies won't pay for all the meds we need, even IF we find one that works.
Imagine suddenly this huge monster grabs you by the neck and sinks his claws in your flesh, then he prys open your skull and crawls in behind your eye on your left side. He sits in there, tormenting you, jabbing his claw in and out of your eyeball and pushing your brain as hard as he can against your skull. You lay there on the kitchen floor, writhing in pain, crawling helplessly back and forth across the kitchen, occasionally stopping to bang your head a few times on the fridge. You see the set of butcher knives up on the counter...if you only had the strength to reach up to get it....certainly sliding the sharp knife in your head right behind your ear at the base of your skull could only make it feel better. It's been 2 hours now. You took your last abortive medication during your attack yesterday, and now you are screwed because your insurance won't cover any more meds this month. You are crying out in pain, and begging God for mercy, still banging your head on the fridge. 3 hours now, and suddenly, the beast takes off, leaving you exhausted on the floor. You are relieved, but you know he will be back for you. Now you only feel fear. You want to sleep, but as clusterheads, we know that the beast always comes during the night. He controls you and you stay awake the whole night in fear. You dose off about 4 a.m., only to be awoken at 5 a.m. already at the peak of pain. It starts all over again. This time in only lasts 2 hours, and you hope you can get the kids ready for school before you get hit again. You call in sick again, with a "headache", and you know your boss is about to fire you. Other people go to work with a headache. The kids get on the bus, you close the door, and turn around, and there he is, waiting, laughing. The beast shows no mercy.
It is not unusual for us "clusterheads" to get hit with 6-10 of these horrific attacks a day. Some get them everyday. Some only get them in cycles of 3-4 months, and then get a remission. Narcotics do not help at all, and we don't even want them, yet doctors treat us as drug-seekers. We want people to know about these headaches. We want to help others who don't even know what the pain they are experiencing is. We want to be recognized. We want research done and we want a cure. No one should have to suffer this kind of pain. A pain so terrible, some have taken their life, others of us wonder how much more we can take. Doctors laugh at us women, because "women don't get clusters". These doctors should be shot. We have over 5000 members on our supprt site: www.clusterheadaches.com
There are many women who have clusters. I am one of them. I have suffered for 25 years most of which I had no idea what was wrong, but I prayed someone would tell me it was a brain tumor so at least there would be a reason. Last year I found CH.com and discovered that many others out there understand the pain I have. I thought I was the only one, and I have no doubt that there are alot of other people out there who think they are alone. I know none of this is funny, and funny is your cup of tea. But I thought you might understand. We are a tiny minority and no one accepts us for being real. Our support group has a section for jokes and stories to help keep us smiling. We provide support to each other. We call ourselves "family". And we welcome every newcomer to "clusterville".
We need a foot in somewhere, to go public, and let the world know. There are alot of us out there, and we pray for community education, doctor education, and a chance to be heard. We want to reach the loners out there so they know they don't have to suffer alone.
Please visit CH.com and also O.U.C.H., Organization for Understanding Cluster Headaches. See for yourself. And please consider being a voice for us. We would love to laugh with you, in between attacks.
Thank you for your time, and for the laughter you share with the world.
Sincerely,
Debbie Hart
Episodic cluster sufferer for 25 years."
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| « Last Edit: Dec 1st, 2003, 11:08pm by Little Deb » |
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Donna_D.
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Re: Long, long, long shot, but......
« Reply #1 on: Dec 2nd, 2003, 2:17am » |
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Deb,
What a GREAT message! If that does not get some attention I do not know what will!!
Great Job....
Donna D.
P.S. Why aren't you writing for the newsletter? 
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 The information contained above is for the expressed use of fellow clusterheads and their supporters. Any misuse of this information by any of my "Ex's" is considered to be creepy and a form of harassment and will be duly noted by the ch.com webmaster 
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Paigelle
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Re: Long, long, long shot, but......
« Reply #2 on: Dec 2nd, 2003, 7:56am » |
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I think it is great! We need someone in the public eye to hear us. I am actually working on an article that I will submit to every magazine on the face of this earth about CH from a patient's point of view. I can't let all of the college writing classes go to waste.
I think you should send that letter to every talk show host you can find.
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thomas
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Re: Long, long, long shot, but......
« Reply #3 on: Dec 2nd, 2003, 8:32am » |
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Awesome letter Deb.
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Little Deb
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Please SPAY and NEUTER all dogs, cats and idiots!
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Re: Long, long, long shot, but......
« Reply #4 on: Dec 2nd, 2003, 9:06am » |
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I actually was thinking of sending it to every talk show host. I am also thinking about writing a book. Or something. I am not the type of person to take on a big project though. Or some kind of inservices for the public....
Let me know how you are doing Paigelle on your article.
Thanks for your encouragement guys. 
Donna, would love to write something for the newsletter.
LD
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brain_cramps
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Re: Long, long, long shot, but......
« Reply #5 on: Dec 2nd, 2003, 9:19am » |
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That was great, Deb. It was about as descriptive as you can get. Hopefully, one of these times, someone with a "public voice" listens and decides to help inform others.
great effort!
grant
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Little Deb
New Board Hall of Famer
Please SPAY and NEUTER all dogs, cats and idiots!
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Posts: 1346
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Re: Long, long, long shot, but......
« Reply #6 on: Dec 2nd, 2003, 9:58pm » |
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Thanks, Grant. Patrick suggested I write to Reader's Digest, so I am on it. Let you guys proof read before I send it.
Deb
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Charlie
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Re: Long, long, long shot, but......
« Reply #7 on: Dec 2nd, 2003, 11:48pm » |
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Nice work. Tons of info.
Someone there better read it 
People just don't get it. We need a Rock Hudson thing.
Charlie 
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There is nothing more satisfying than being shot at without result---Winston Churchill
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