Posted by Laurence on June 30, 1998 at 14:13:32:
In Reply to: Re: Possible media blitz? posted by Ken on June 30, 1998 at 10:52:38:
Hi Ken,
I very much agree with your comment that we all become stronger as we unite around this web site and learn how to help and support each other. It is also quite remarkable from the guest book entries and the message boards how this is taking off around the world. Although it has only been going since April, people are getting to hear about it. I certainly told my GP and neurologist about the site. My secretary told her pharmacist and he, believe or not, happens to suffer from C/H and so he was fascinated to hear about the web site and also how the oxygen treatment worked. The site has now therefore helped somebody in the “health business”.
I have also seen this site getting attention in the medical world at the “The Diagnosis and Treatment of Headaches and Migraines” web site by David C Haas MD, Professor of Neurology and headache specialist at the State University of New York Health Science Centre at Syracuse. The text to the link to the web site here is as follows: “DJ Johnson, a cluster headache sufferer, has written a fine site in which sufferers can exchange information, get news on cluster headaches, and access the Web sites on this condition. The quality of the information contained within the other sites varies considerably.” I think that’s a round about way of saying the other sites are not much good but this one is! I have, I hope, put the link to that page on this one for anybody that wants to look at it. There is already a link, but to a slightly different page, on the full links site here. In case I do it wrong (I am new at this game you know) the address is http://www.hscsyr.edu/~haasd/hpclrx.htm
I also entirely agree with your battle analogy. There are many battles to be fought before you win a war and so we must all be patient. The media will get interested if we are lucky. If not, we just recognise that it takes time and effort and so we must keep plugging away. Actors and pop stars, for example, often delight in saying how it was that after so many years in the business, they then became an overnight success. Life is so often just like that.
I don’t know about God giving me this for a reason, but you may well be right that as we endure each cluster we may be getting stronger, wiser or more patient. Certainly we learn what pain is and my wife tells me that I am more considerate when I am going through one of these cycles. I think in America you might put that she thinks I am less of an asshole. (My UK spell checker is having difficulty with that word).
I cracked up at the thought of a Cluster party. If there was enough of us there we could go in for a bulk purchase – perhaps rent an oxygen tanker for the night and then all hook up together when the pain started. What a gas.
Bye for now
Laurence