Posted by Elaine (220.127.116.11) on August 01, 1999 at 20:54:33:
Hi all I made it back home today. It was a long trip, but oh so wonderful. I have put over 3000 miles on Heathers car. To start with I would like to thank my Daughter Heather who went with me. I could not have done it without her. We became closer on this trip.
I took this trip for several reason. One I wanted to met all these people who have cluster and their supporters. I have had CH 19 years and just had to talk to others in person who had them. A few weeks ago
I found a lump on my breast. It is cancer. They also found out I have lung cancer. I have chosen not to have any surgery done. What time I have left on this earth will not be wasted. So wile able I took the trip.
I am chronic and have CH everyday. So the Demon was with me all the way. I also took this trip to get away a while. My husband of 17 years asked for a divorce two days after I was told I had Lung cancer. My whole world had fallen apart. This trip was all I had to hang on to.
Now are there really people out there that have Cluster Headaches? If so are they strange? I found them to be very real and not strange at all. They were normal people just like me. They were the friendly bunch of people I ever met. A bond formed right off. We talked as old friends not new ones. Days full of laughter, tears, and pain. I had several CH outside of my own home and was no longer ashamed. The first time I have ever done that. I am going to tell you a little something about each one. Then at the end I will tell you if DJ is real.
Steve B was real. It was a very kind and wise man. He has a wonderful wife and two children. They fed me and we talked for a long time. The only thing wrong with the visit was it was to short.
Next Dave (Drummer) OK we all saw the post he wrote for me! He is a idiot! He does like the F word a lot.
Dave is a wonderful man. He is good looking, has a beautiful wife name Larie and they have two daughters Megan and Sara. Dave has a heart as big as the world. He trys to be a tuff guy but he sucks at that. He is kind and sweet. I do have to tell one story about something that happen to Dave and me. The night I had a CH And had to use Daves oxygen. Well Here I am on my knees on the fool getting over the pain. I removed my oxygen mask the band pops and some how gets caught in my ear ring. I can't get the ear ring removed nor the oxygen mask. Dave is trying to help me. But all we can do is laugh at each other. Daves oxygen has a mind of its on.
Now Laurie Daves Supporter. A wonderful lady, great wife and wondeful mother. She was a real rock through all this. Poor woman, clusterheads all around taking over her carport, her house. She and I went shopping and we talked and laughted and had a great time. We became friends fast. Even tho she does not have CH. She knew first hand about the pain. She made me and the others feel right at home.
Megan Daves daughter She is six years old now she bonded with my 21 years old daughter Heather. They now have friendship necklesses they wear. Megan did not like it if Heather was not there. Megan is a supporter also. She learns fast.
Then There is Sara Daves other Daughter. That child is two and the happiest child I know. Sara did let me hold her long enough to get a picture with her.
Next Kip and his wife Judy. Kip is a nice man he loves to tell stories. Some stories that will make you laugh till you cry. He is a tender hearted man. Loves his wife. He was hit with a CH while there. He handled it well. It hurt us to see him in pain. He had it at Daves house and he wanted to go back to the motel. We all piled in two cars Kip and Judy in Daves car. I followed with everyone else in my car. Dave lives there so we thought Dave could get him home faster. NOT! Dave went the wrong way! Kip bless his heart walked the parking lot for a hour. Then there is Judy his wife. The sweetest thing. She had a hard time. I think she got board and wanted to get our hearts pumping. She sure did. Scared Dave so bad when we told him to call 911, he remembered the number!!!!!! I was glad to know all turned out well for Judy. Scared us silly.
Then there was Todd, Nice looking man, smart caring man. Very organized. God I wish I had his mind. He was the brains of the group. Todd suffers also from cluster and was not in a cycle. Todd had to be a supporter. Todd will be working with me on the convention. The only thing wrong with Todd was he didn't stay long enough.
Then there was Mom Barbara D. oh what a great lady. She kept us all going and laughing. She was a supporter for me one night. She did a great job. Barbara is just what you would expect. She is a go getter. She is on the ball at all times.
Then there was Cathy and her husband were there for a while. I was not able to visit with them. I was ill that day. I hope to met them again.
The day came for ech one to leave Daves. Tears always came as we each said good bye.
I stayed at Daves the longest the first to get there the last to leave. When I huged Dave and Lurie good bye a lump came in my throat, my voise trimble and my hands shook. As we drove away I heard a noise in the car it was Heather she was crying. We both cryed for a long ways down the road.
Now I just could not go home without finding out if there really was a DJ. So I left for Wichata Kansas
I got hit with a CH and had to rent a room. Drove for two days stoped for a CH or two and a couple hours sleep. When we got to Wichata Heather and I got a room and called the web master and told him we were in town.
He came to our room after he got off work. YES THERE REALLY IS A DJ. DJ and I huged and talked as if we were old friends. Yes DJ did feel soft like a pillow when we huged. Yes DJ is a hunk! He is 32 years old. But he is not a GOD, he is just like you and I. He is a man that has clusters. He formed the web site and was as suprised as we were to find that he was not alone. DJ is the man as Dave would say. He is a very careing man. He loves country music, the web site and good food and likes to have fun. He showed me his computer room and read me some post from the first of his site. He has a wonderful mother that he loves dearly that I was able to talk to. DJ was everything I expected and much more. DJ and I went to dinner and then to his house and played on the computer. When I went back to my motel that night, I was greatful I did not have a CH at his home. DJ was worried about that.
The next night I met DJ at his house and we went to dinner there we net Nancy. Nancy was normal at dinner. She was a very lovely lady. We had a great dinner and lots of laughts. DJ and I read Nancys post when we got back to his house. I don't know what was in her tea that night. I was up set they didn't spike mine.
Now that night I had a CH at DJs and DJ hooked up his oxygen for me to use and he sat with me on the floor. Nancy had gave DJ and I a smiley face stuff toy to squeeze durning a CH. I was on the floor rocking and breathing the oxygen and DJ put it in my hand. It did make me smile. DJ sat behind me and he rocked with me
until the CH was gone. Then we sat up late and read the board. We talked most all night. That night something happened between DJ and I we became the best of friends. DJ and I laughted so hard. He is a cut up and so am I. The lights went out as we sat at his computer. Now here I sit in the dark with DJ. I said "My prayers have been answered". I couldn't see DJ face but oh how I wish you could have heard him laugh. The lights were only out for a few seconds. I soon got my Bear he gave me and I left. It was hard to say good bye, to this man the man that made it all possible. I cried again. I left with a good feeling but also a sad feeling. I have so many special friends
because of this man. I know I am not crazy, I know I am not alone.
The trip home was not as happy as the trip going. I cried knowing I might night se them again. I cried knowing Buddy was leaving me. Buddy and I had talked just about everyday and we were talking about working things out but in my heart, I was not sure. I called Buddy from the cell phone and told him to fix me and Heather someting to eat we were 10 miles from home. When we drove up My son my Daughter and Buddy were in the drive way. When I got out of the car he huged and kissed me and told me he loved me we both cried. My children huged each other and cried. I think the trip
helped me in many ways.
Please find a person that lives close to you on the board and get to know them call them go out to eat. I can not put in to words as drummer and other do to say
how I feel. I am the happiest woman in the world right now. Thanks guys I love all of you there is a special place in my heart for each of you.
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