Posted by Cassandra on October 31, 1998 at 23:39:16:
In Reply to: Re: OH MY GOD!!!! - followup posted by David Mowrer on October 31, 1998 at 20:49:52:
Hi, it's me again!
I was a bit upset last night when I wrote my letter to the Health Reporter at the Journal-Sentinel (big understatement! :) ) I posted my letter to the message board because I felt it important to let people here who are experiencing the same frustration (dealing with misinformed doctors and so-called experts) know that we CAN make our voices and opinions heard. Quite honestly, I don't feel I will receive a response from the paper, but if even one mundane, normal person with no previous exposure to CH's will take the time to get informed, and they share what they've learned with others, we may have a fighting chance at bringing about some solid help. What better place to start than the news media?
I'm not a spokesperson or an expert on these headaches. I'm not even very good at navigating the internet! I'm just the daughter of a wonderful woman who suffers from CH's, and I'll be damned if I'll sit back and let supposed "experts" take cluster headaches back to the 70's, where a woman - or a man - should be ashamed of complaining about a headache! My contribution may be small, but I will continue to do what I can in my own way to help bring about some help. My mom looks to finally be coming off her cycle of headaches, and if her pattern remains the same, hopefully 2 years from now she will have a cure, or at least some effective relief.
This website is a wonderful gift in that it has brought so many people - sufferers, family members, concerned friends- together from around the WORLD, and has provided a place to be heard, as well as to listen. If you want to make a move in a positive direction, know that almost everybody has a local paper, or talk radio station, or local college campus. We all have resources to make CH known to our communities where there may be others who suffer and believe they are the "only one." Not everybody has a computer and access to the internet. When we reach out to help others, we also help ourselves.
Just something to think about... I realize most who come to the board are desperately looking for relief. Maybe those of us who don't have CH's or are not in the midst of an episode could come up with some suggestions???
God Bless and a restful night to you!
Cassandra