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mabus
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Celebrities?
« on: Nov 26th, 2005, 10:32pm »
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Not that it really matters, but I'm curious whether anyone knows of any celebrities/athletes of prominence/politicians, etc that are CH sufferers.
 
Our affliction still seems to be pretty low profile, and I'm curious if there are any major public figures that are "out" as CH sufferers, which could only help to broaden public awareness.
 
Maybe that would lead to research someday....  Michael J. Fox has does a lot for Parkinson's, and we could "use" someone similar on our side.
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Re: Celebrities?
« Reply #1 on: Nov 28th, 2005, 1:54am »
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We keep searching and searching mabus, but have not found any (living) celebrities who have made any public awareness that they suffer from CH. Always on the lookout though, some suspects, but they haven't replied. You're right though, it'd sure help if we had someone with a recognized household name bring CH out to the world to learn about.
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Re: Celebrities?
« Reply #2 on: Nov 28th, 2005, 4:37am »
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Hey Mabus,
 
Good idea I'll grant you.  I spent far too many hours last night searching online for something but came up with nothing.  Found out lots of other interesting titbits about CH but not anything useful here.  Will keep my eyes and ears open tho cos I agree it would be a great way to get the word out.  
 
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BarbaraD
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Re: Celebrities?
« Reply #3 on: Nov 28th, 2005, 4:46am »
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There have been a few. A basketball (or football) player a couple of years back was taken off the field with Clusters -it was in the paper the next day with a diagnosis of CH and an article about it. We sent him a shirt and a note, but heard nothing from him. A couple of celebs were on Larry King, but it didn't go anywhere either. One guy was giving the symptons of CH and calling it migraines.... Guess these guys just want to suffer alone..... whatever...
 
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Re: Celebrities?
« Reply #4 on: Nov 28th, 2005, 6:50am »
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on Nov 28th, 2005, 4:46am, BarbaraD wrote:
There have been a few. A basketball (or football) player a couple of years back was taken off the field with Clusters -it was in the paper the next day with a diagnosis of CH and an article about it. We sent him a shirt and a note, but heard nothing from him. A couple of celebs were on Larry King, but it didn't go anywhere either. One guy was giving the symptons of CH and calling it migraines.... Guess these guys just want to suffer alone..... whatever...
 
Hugs BD

 Yeah Barb ... it was the Basketball Player who didn't return our requests to talk about CH to whom the Shirt and notes were sent to.
 The football player you are probably thinking about was Terrell Davis of the Denver Broncos, who had to leave the Superbowl game due to ...???  So far as my research lead me as having contact with his doctors that he actually is "only" (sorry 'bout that word!) a migrainer.
 Since I'm no longer a OUCH officer or BoD member, I often wonder why Lisa Kudrow doesn't speak out on our behalf? Her father is a great specialist in CH. She must know this, but I would not intrude on that area for the sake of privacy and keeping Dr. Kudrow as a good asset to OUCH for his own practice.
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Re: Celebrities?
« Reply #5 on: Nov 28th, 2005, 8:40am »
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I think the reasoning is that we are not in wheelchairs(I don't knock them, I have siblings in wheelchairs) or look starved Wink to make us look pleading and pathetic enough to a cause for someone of their caliber to get the publicity they need Sad
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Re: Celebrities?
« Reply #6 on: Nov 28th, 2005, 11:43am »
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I think it was Kendall Gill of the CHarlotte Hornets...
 
http://www.prolonews.com/migraines.htm
 
he called them cluster migraines.
 
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Re: Celebrities?
« Reply #7 on: Nov 28th, 2005, 4:36pm »
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on Nov 28th, 2005, 11:43am, vig wrote:
I think it was Kendall Gill of the CHarlotte Hornets...
 
http://www.prolonews.com/migraines.htm
 
he called them cluster migraines.
 

Yes it was Vig ... just never heard back that I'm aware of.
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Re: Celebrities?
« Reply #8 on: Nov 28th, 2005, 6:31pm »
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The King
http://www.migraines.org/about_media/elvisdhe.htm
http://www.elvis-express.com/ailmenmaia.html  
 
and Mrs King
http://edition.cnn.com/TRANSCRIPTS/0504/26/lkl.01.html  
 
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Re: Celebrities?
« Reply #9 on: Nov 28th, 2005, 7:30pm »
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on Nov 28th, 2005, 6:31pm, ben_uk wrote:

The King
http://www.migraines.org/about_media/elvisdhe.htm
http://www.elvis-express.com/ailmenmaia.html  
 
and Mrs King
http://edition.cnn.com/TRANSCRIPTS/0504/26/lkl.01.html  
 
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good one ben....
 
I did a search/find on the Larry King interview and the CLUSTER part showed this:
 
Quote:
Watertown. Hello.
 
CALLER: Hello, yes. I'm 30 years old and I've been taking Topamax now for quite a while. And I was wondering if Dr. Diamond can tell me the highest dose that he would recommend to take. And also, I suffer from cluster headaches where it feels like spiders are actually coming out of my head, and I go to the hospital and I vomit and they gave - the last time I went, they gave me oxygen. Is that recommended? What does he think about that?
 
L. KING: Dr. Diamond?
 
DIAMOND: Okay, first of all, I wouldn't want to venture over the television to tell you what dose to take. That would be up to your individual doctor. I'm sorry. I just couldn't give that type of advice. Secondly, in cluster headache, oxygen, strangely, constricts the blood vessel. It is a vasoconstrictor. And if you're getting a cluster headache, breathing 90 to 100 percent oxygen will eliminate the cluster headache.
 
It's interesting that you, as a woman, gets cluster, because God repaid men for women having migraine, he gave men cluster headache. About 90 percent of cluster suffers are men.
 
L. KING: Now, cluster sounds worse. Cluster sounds like you're being hit with a hammer.
 
OLSEN: You are. It's much worse.
 
L. KING: It as much worse?
 
OLSEN: Much worse. It's the leading cause of suicide among disorders. I think it's followed by shingles, but -- because it's so intense.
 
L. KING: How did they get the name?
 
LAWLIS: I don't know how they got the -- they come in clusters. That's right.
 
DIAMOND: They come in groups. They come in bunches, and that's why.
 
L. KING: Do you ever get that?
 
S. KING: I was diagnosed with cluster headaches.
 
L. KING: You get cluster, too.
 
S. KING: I -- you know...
 
L. KING: You have every known gene in the world.
 
OLSEN: You're a lucky girl, aren't you?
 
L. KING: Lee, do you get cluster?
 
GRANT: No, no, no. But one of my really dear friends who is no longer with us, a guy, used to get cluster headaches. And he carried an oxygen tank with him every place that he went. And he would crawl on the floor on the bathroom floor. I mean, the pain was so excruciating. It was incredibly bad.
 
L. KING: I can't imagine how you people do it.
 
Buffalo, New York. Hello.

 
I think it's pretty interesting that the famous Dr. Seymour Diamond is so unfamiliar with CH that he can't, at first, remember why they're called *clusters*.  
 
Also, his remark about women rarely getting CH oughta put some bullets in BobP's scattergun....heh
 
And Dave E: I absolutely agree that the Lisa Kudrow connection should explored by OUCH or by anybody that has *connections* to famous people. We NEED a POSTER CHILD!! I remember that *Sommellier* from the LA area had some pretty good shots at celebrities... (what ever happened to the Smelly ole wino anyways?)
 
...hell, we gotta *KING*..... too bad he's only famous HERE....
 
bite me jonny.....  Grin
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Re: Celebrities?
« Reply #10 on: Nov 29th, 2005, 10:10am »
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Celebrities and historical figures with “Headaches” include, among many: President, and architect of the Declaration of Independence Thomas Jefferson; the great painters Vincent Van Gogh, George Seurat (after which is named the Seurat effect, a current medical term often used to describe the visual phenomena of scintillating aura aka scotoma), and Claude Monet; great authors Virginia Woolfe, Cervantes (best known as the author of the classic, 'Don Quixote'), and Lewis Carroll who's “Headaches” are said to have influenced his gifts of literature still so popular today; leaders such as Julius Caesar, Napoleon, Ulysses S. Grant, Robert E. Lee, and Mary Todd Lincoln; scholars such as psychoanalyst Sigmund Freud, and Friedrich Nietzsche, the great German philosopher and poet; and Icon Elvis Presley, the King of Rock & Roll who struggled with the king of all 'headaches.'  
  Performing artists who suffer from “Headaches” include Academy Award winning actress Elizabeth Taylor, actor James Cromwell who received a best actor nomination for his portrayal of Farmer Hoggett in Babe, movie star and Friends actress Lisa Kudrow sometimes suffers from “attacks”, supermodel and Friends actress Elle Macpherson, actress Lee Grant, Grammy award winning singer and songwriter Carly Simon, her number one single "Your So Vain" as popular now as it was in the 70's, country singing giant Loretta Lynn, Susan Olsen of Brady Bunch fame, Star Jones of The View daily TV show, Fred Norris of the ever popular nationally syndicated Radio & TV Howard Stern Show, and endearing & powerful Academy Award winning actress Whoopi Goldberg.
  Currently, some notable public figures suffering with “Headaches” are: Princess Margaret, Jennifer Ringley, the Jennicam girl (Jennicam.org) who put her life on the internet 24-7 and inspired the hit movies The Truman Show & Ed TV. Annie Glenn (wife of astronaut & Senator John Glenn who stood up to Vice President Johnson when she refused to let Johnson and reporters into her home after a launch attempt was scrubbed. Other notable “Headache” sufferers include sports basketball greats Kareem Abdul-Jabbar and Scotty Pipen.  
 Top athletes cannot hide their disease as skillfully as many actors can, as we saw when MVP Denver Broncos running back Terrell Davis almost was knocked out of the Superbowl XXXII due to an ill-timed “Headache” attack. Other gifted major athletes who currently fight one of their toughest adversaries (“Headaches”) include Cleveland Browns Strong safety Marquez Pope, LSU's top quaterback Rohan Davey, and Arizona top runningback J.R. Redmond. Baseball's David Bell of the Seattle Mariners, Dwight Gooden pitcher for the Cleveland Indians, Minnesota Twins Pitcher Eric Milton, Jose Canseco of the Tampa Bay Devil Rays, and Sacramento Kings Jason Williams have been struck out by severe head-pain and the deep bench of ancillary symptoms from nausea to visual disturbances. Top woman golf pro Se Ri Pak, as well as LPGA leader Kathryn Marshall and golfer Fred Couples have to overcome the unpredictable “Headache” hazard. Basketball's Sacramento Kings flashy Jason Williams and collage basketball player Jordan Adams who starts for Kentucky, both have had debilitating “Headaches” take them from key games.  
  Nationally ranked artists who suffer from “Headaches” include New York painter Janet McKenzie, California painter and sculpture Trevor Southy, painter Dennis Frings, and BJ Anderson who suffers from Migraine-like headaches (she is known around the world for her popular renderings of Cape Cod.)  
  It is important to note that for “Headache” sufferers who have certain professions, such as the performing arts, which puts them in the public eye, it becomes difficult for them to admit that they have “Headaches”. With hundreds of thousands of dollars, or even millions of dollars riding on a performer being on a set on time, the stigma of such an episodic disease can interfere with getting the best job opportunities offered to them.  
 And finally, some of the most notable “Headache” sufferers of all are mothers, many of whom around the world are challenged by debilitating “Headaches”. Despite their disease, they go on to raise families, manage households and/or careers, and contribute to communities. Many fathers, too, are “Headache” sufferers, who continue to care for family and loved ones, carry out careers, build homes, and participate in their communities. To continually fight a debilitating episodic disease while continuing to contribute to others makes them unsung heroes deserving of celebratory status in society as a whole, even though they are not household names. Well, they are, of course, household names, (as "Mom" and "Dad" are household names) --- so for those who read this and recognize their family member as a “Headache” sufferer, give them the love and respect they need and deserve.  
 
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Re: Celebrities?
« Reply #11 on: Nov 29th, 2005, 6:31pm »
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on Nov 29th, 2005, 10:10am, ben_uk wrote:

Celebrities and historical figures with “Headaches” include, among many:

 Ben, could you send me an email with references to these possibilities of Celebs who may suffer CH?
 I'm pretty good at reasearch, even have been in contact with the Kapra family.  
 I try to stay in "respect first" conversations with family members and don't push if they do not want to bring things out into the public.
 If I had references, I could do my own research and contacts, maybe could use for OUCH volunteers in way to help.
 I'm on the phone with Rex as I write, so excuse any confusion that might appear in this post  Wink
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Re: Celebrities?
« Reply #12 on: Nov 29th, 2005, 7:02pm »
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on Nov 29th, 2005, 10:10am, ben_uk wrote:
Fred Norris of the ever popular nationally syndicated Radio & TV Howard Stern Show

 
Ive listened to the Stern show everyday its on for nearly ten years and thats news to me.
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Re: Celebrities?
« Reply #13 on: Nov 29th, 2005, 8:02pm »
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Hey Ben,
 
I saw a few of these names listed when searching online but I was under the impression that the 'headaches' they suffered from where actually migranes????
 
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Re: Celebrities?
« Reply #14 on: Nov 29th, 2005, 8:38pm »
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Plagiarized from here -
 
 
http://www.migraines.org/myth/mythgood.htm  
 
My CH was called “migraine” for 15 years – “trigeminal neuralgia” for 5 years and “migraineus neuralgia” for a further 5 years !
 
 
 
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Re: Celebrities?
« Reply #15 on: Nov 29th, 2005, 8:53pm »
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Just goes to show you that they will say anything, dont it?
 
Dont matter if its true!
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Re: Celebrities?
« Reply #16 on: Nov 29th, 2005, 9:03pm »
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Quote:

Also, his remark about women rarely getting CH oughta put some bullets in BobP's scattergun....heh  
 

 
  uh-huh.  
 
 And speaking of Bobby...He tried to get Kudrow on board a few years back when he was President of OUCH.   Got a VERY cold reception if I remember correctly.  I doubt if Lisa would be any more-so.   Embarassed
 
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Re: Celebrities?
« Reply #17 on: Nov 29th, 2005, 9:40pm »
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on Nov 29th, 2005, 10:10am, ben_uk wrote:

BJ Anderson who suffers from Migraine-like headaches  
 
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The “migraine-like headaches” intrigued me and while looking for BJ Anderson, I found – MT Anderson -
 
http://www.mkanderson.com/portal/modules.php?op=modload&name=News&am p;file=article&sid=242&mode=flat&order=0&thold=0  
 
Cluster Headaches  
 
Personal
Posted by: mkanderson on Monday, November 14, 2005 - 10:00 PM  
 
 
Where have I been? Well, it's that time of year again when I'm injecting myself with Imitrex and trying to keep my sanity as cluster headaches take over my life and rule my schedule and destroy my sleep. Cluster headaches are some kind of cruel torture created in hell by the lowest of demons and inflicted on unsuspecting humans, I'm sure, as punishment for past sins.
 
If you don't know what cluster headaches are, read this:
 
Cluster headaches are severe, one-sided headaches that recur in groups, or "clusters," over a period of weeks to months. While common headaches can be painful, cluster headaches can be debilitating. Cluster headaches are sometimes referred to as "suicide headaches" because they are unbearably painful. Although cluster headaches can be temporarily disabling, they do not cause permanent damage.
 
Cluster headaches are relatively rare, and are one of the few types of headaches that affect men more often than women.
 
"Suicide headache" is right. The pain is so unbelievably unbearable, there have been times I thought my body would give up. I'm not really a suicide thinker, but I'd do anything to get rid of the headache. Which is why I have no hesitation to give myself a shot of Imitrex.
 
Symptoms include burning or sharp, piercing pain on one side of your head. The pain radiates around the temple and eye, with the affected eye becoming red, watery, or puffy. The eyelid may droop, and you may have a runny or stuffy nose on the affected side.
 
....
 
The pain usually intensifies quickly—within 5 to 10 minutes of onset—and may last for around 30 minutes to several hours. These headaches may begin at night, within 2 to 3 hours of falling asleep. They may start while you are dreaming; however, they can occur at any time. Cluster headaches can continue for days, weeks, or months before you stop having symptoms (remission). You may not have another cycle of cluster headaches for months or years; less commonly, your headaches may become chronic and continuous.
 
Some historical figures have reported severe headaches that seem to fit the description of cluster headaches. Edgar Allen Poe and Friedrich Nietzsche are a couple of guys who self-treated their chronic headaches with opium and alcohol. I know what it's like to have these headaches without immediate relief. I've had cluster headaches since before Imitrex was created. Then I can only imagine not knowing what's going on because of the butchers that passed themselves off as doctors back then. I can imagine to avoid a lobotomy, opium seemed like a good idea.
 
Imitrex is a wonder drug. Within 10 minutes of an injection, the headache is gone--completely. The downside to it is that a single, two-dose box, which is how the drug is packaged, is $135.00 at Sam's Club. My insurance doesn't cover the meds. For me to have what I need to get through a cycle of headaches, I have to cough up $2000 or more. So I take the pills when I don't need to go anywhere. They are slower, but I don't go broke treating the headaches. My goal for next year is to have a health savings account with enough money in it to cover a cycle with Imitrex injections.
 
I'm going to get back to writing this week as the other treatments have made things bearable. I'm on Prednisone and Verapamil, which are both used to shorten the time I'm in a cycle. All of this is a lot to be on at the same time. But then again, I like my sanity.
 
 
?
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Re: Celebrities?
« Reply #18 on: Nov 29th, 2005, 10:05pm »
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Well hmm from history....lets not forget Frederic Chopin....who, as an Aussie journal pointed out several years back, may have died from Cystic Fibrosis instead of TB.  He suffered from very vivid migraine aura and composed much of his music during these phases - as well as died in his 30s due to what was originally described as TB.
 
I'm working on a programme of his music only right now because of what I just wrote above.
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Re: Celebrities?
« Reply #19 on: Nov 30th, 2005, 6:59am »
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Not sure that this is either a “celeb” or CHer, but I found it “interesting” –
 Lizbeth Finn-Arnold -
 
http://www.literarymama.com/columns/momandpopculture/archives/000821.htm l  
 
 
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Re: Celebrities?
« Reply #20 on: Nov 30th, 2005, 9:05am »
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More -
 
 
http://www.lordsofpain.net/news/2004/articles/1086197148.php  
“Mine usually comes in clusters. For instance, I haven't had them for about 5 months until they hit me 2 weeks ago. When I get one, I usually suffer through several migraines until they might go away again”
 
 
 
http://www.lukeford.net/archives/updates/040625.htm  
“I suffer thrice weekly from cluster headaches that center in my left eye, which experiences something akin to 40,000 volts pulsing through it every 40 seconds during six-hour attacks. Folks so afflicted don't gnash their teeth -- they poke their gums with dental picks as a distraction. A spike in the eye would be a welcome diversion.”
 
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Re: Celebrities?
« Reply #21 on: Nov 30th, 2005, 9:13am »
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on Nov 29th, 2005, 10:10am, ben_uk wrote:

  Currently, some notable public figures suffering with “Headaches” are: Princess Margaret, Jennifer Ringley, the Jennicam girl (Jennicam.org) who put her life on the internet 24-7 and inspired the hit movies The Truman Show & Ed TV. Annie Glenn (wife of astronaut & Senator John Glenn who stood up to Vice President Johnson when she refused to let Johnson and reporters into her home after a launch attempt was scrubbed. Other notable “Headache” sufferers include sports basketball greats Kareem Abdul-Jabbar and Scotty Pipen.  
 
 
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i think you'll find Princess Margaret is dead Sad   Wink
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Re: Celebrities?
« Reply #22 on: Nov 30th, 2005, 2:06pm »
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I can think of some celebrities and politicians that I would like to have CH.  Then, maybe, more time and $$ would be spent on understanding the problem.  If we can spend $200M on a bridge (in Alaska) that goes nowhere and makes life more convienent for a lesser number of people than those who experience CH then why can't we give $5M to someone who is researching a way to, at least, provide more relief for CH.
 
Rant over, give me the O2.
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Re: Celebrities?
« Reply #23 on: Nov 30th, 2005, 5:47pm »
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on Nov 30th, 2005, 2:06pm, Spike_Inmyeye wrote:
I can think of some celebrities and politicians that I would like to have CH.  

 
You sure you have CH?
 
Even the mean bastard that I am I would never wish this on a someone!!  Roll Eyes
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Re: Celebrities?
« Reply #24 on: Nov 30th, 2005, 6:51pm »
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In the grand scheme of life there are plenty of maladies, or situations, that are worse than CH.  Way too many.  Unless it is my CH which is more important than anyone else's (at that moment)!  What has caused me to vent my frustration are the trite celebrity pleas for every bullshit condition that is known to man.  I really don't give a shit that Lindsey Wagner has acne, or that some guy who is so much better looking than I am, and has a girlfriend 25 years younger than himself, has errectile dysfunction. There are other things we can spend money on and other causes that can be trumpeted by the celebrities.  Yeah, I want a celebrity for CH and I want it to be someone like James Earl Jones, Samuel Jackson, Sean Connery or Freddy Krueger.  Someone with some gravitas, cojones, who generates fear and respect.  Just like a CH.  Think about it, would some fluffy comedian or pretty-boy actor truly define CH?  As I sit here in the shadow of what is going to come 90 minutes after I go to bed I can honestly say that the brutality of a CH can not be conveyed by anyone else.  And yes, you are right, I don't wish CH on anyone.
 
Except the politicians.
 
I'll stop before I explode.
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"If you can treat it over-the-counter it isn't a headache"
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