Posted by drummer on June 07, 1999 at 04:48:24:
Hello Everyone. O.U.C.H. is slowly coming together, thanks to OUR small group of caring, understanding people. The last time I checked there have been 555 caring, understanding people that have taken DJ’s survey. This is the small group that I am speaking of. I consider this group family. Not only is this group of people caring and understanding, they are also suffering an exquisite, tortuous pain. I am amazed at how these 555 people who suffer this misunderstood illness, can have such motivation in seeking understanding from the outside world. WE have all met frustration in our attempt to explain our illness to family, friends and doctors. As I read the entries to “the guest book” I see the same thought repeated over and over again. “I thought I was alone, I am so glad that I found you”.
Personally, I can’t imagine my life with out this web-site. I consider this web-site my home. Before I found this glorious home, I had never heard the phrase, “been there, done that”. I love that phrase. It is much better than receiving “the look” when trying to explain Clusters to someone who does not suffer this illness. It is unbelievably comforting to communicate with a group of people that KNOW exactly how I feel.
There is another group of people just like US outside of OUR home. This group of people have not found OUR home. They are suffering alone just like WE were before WE found OUR home. O.U.C.H is being created to reach that group of people. They need to be a part of US. They are US.
Each of US needs to find these people that are alone and bring them to OUR home. The only way to find these people is to put our painfully, sore heads together and think of a way to reach them. All of US need to go to “Where we live”, (the link just under “Cluster Survey”). WE need to go to our state or country and make sure that OUR name is listed under the title. WE then need to look at the people that are near US and send them an E-mail.
I have set a goal for myself to write the several people that live near me and ask them if WE can communicate via, “AOL Instant Messenger” or “ICQ” or by phone. My goal is to write this E-mail to them by Wednesday of this week. I am going to ask them to pretend with me. I am going to ask them to pretend that they have not found this home. I am going to ask them to pretend that they are still alone. I will then ask them how they would feel if one day when they were suffering alone they received a letter in the mail that said, “Hi, I suffer from Cluster Headaches and I live down the road from you”. Can you imagine? I bet if I received that letter to my house that I would have the same feeling of joy that I had when I found this web-site.
Is this something that WE all can do? Do you think we can find the group of people that suffer the same illness as US that have never heard of clusterheadaches.com? Don’t WE need to find them? My doctor has told me that he treats 2 patients with Cluster Headaches. Me and someone else. He won’t tell me someone else’s name. He is only one doctor out of several that live near me. I wonder how many other doctors near me are treating people with Cluster Headaches. I wonder if those people would like to communicate with others like WE do here on this message board. I wonder if there is someone who knows nothing of clusterheadaches.com that is taking a medicine that WE have never heard about. I wonder if that medicine would help me and you. Let’s put OUR painfully, sore heads together. Let’s find a way to reach the rest of OUR family. Right?