Posted by Bob P (129.65.106.111) on August 25, 2001 at 09:47:06:
In Reply to: ShariRaes post made me stop and realize posted by Donna on August 24, 2001 at 22:41:41:
I see the trend.
Some may feel that not much has changed in the past few years. Changes in us, changes in CH.com, changes in OUCH.
I see a big difference. Being able to use this board to gather information and advice from the old timers. Using the OUCH Library to gather technical information on our disease. Being able to speak intelligently with our doctors. Standing up for what we need and deserve.
When I start a cluster and my doc won't see me for a week or two, I tell the nurse that I'll be ending this pain long before that! They don't call 'em suicide headaches for nothing. That usually gets me in the same day I call.
The real, accomplishable goals for OUCH right now are to unify sufferers, support, educate and increase awareness.
Send that tape to the media anyway. I bet they'll jump on the story in a heartbeat! You don't have to include the doctor part but just the CH part will interest them. Actually, Cheryl and the Media Team are working on a tape just for this purpose.
Who would have thought a few years ago that we would be a worldwide organization. Talking and dealing with the likes of Goadsby and Kudrow (yeah, I faxed him a letter yesterday asking about his feelings re the web sites and asking him to assist us in becoming better perceived).
There's been a big change for the better. It's slow and it comes in small steps but it's happening.
Keep on top of the new information as it comes. Keep hammering the media and the doctors and Glaxo. Keep throwing the OUCH name in front of them. It'll take time but soon we'll be getting those letters from George Dubya.
OUCH (that's you guys) ROCKS!