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Posted by Elaine (64.34.202.197) on February 05, 2001 at 15:47:27:

In Reply to: Selfish Is As Selfish Does ! posted by MOB on February 05, 2001 at 05:26:40:

Everyone of us is to blame!

I have felt the same way you do MOB, and said the same thing. I felt I was right to say that and feel that way. But after thinking about it! Who is to blame for this board being the way it is? You know how much you mean to me, but I have to say what I think here too. I expect others to voice their opinion to this post, good or bad.

I know how you feel. I spent 21 years with this demon. When I found this site, it was the greatest feeling in the world. I am pain free today because of it and the people here. I am going to stick around and give back what I can..

I can understand people wanting to get away from the pain, the memory. Even if I did not come here I could not forget. Now that I am eposic(sp)I want to not only help, but keep up with things. I am not going to wait till I get hit again then try to figure what will help me. I am going to study any new drug that comes out ect...I don't want to miss something. That something might just be the thing that will keep me pain free forever who knows. Should my son get these clusters God forbid, I want to be able to help him. Thatís me thatís not you or someone who is lurking here. Some people donít know how to help others itís not their talent. Why try to force them to do something thatís not what they want to do or that they are not good at. Why donít we try to get them to stay and make them feel useful.

I think its a shame that there is only 150 members in O.U.C.H also! How many of us have written the newbies Or posted a post explaining O.U.C.H.! I see a lot of post about O.U.C.H.! Write people tell them about it. Donít just post join O.U.C.H.! Post what itís about what it can do. What we want it to do! Always post a link to the O.U.C.H. site. People donít join every organization there is. My friend has a Kennedy(sp) transplant . I never joined the Kennedy foundation. I have cancer, I never joined the cancer society, I have donated money but never joined. I like animals, I am a member of a Humane Society. I don'ít join everything. Somethingís are just not my thing.

I have cancer, but I do not want to be around others with cancer. Because they scard the living hell out of me. It reminds me of things to come. I donít look in a mirror if I can help it cause it reminds me, that I am no longer pertty! We all look at things different. Does this mean I donít care? I care a lot about this, but I have to push it back, and get away from it to go on with my everyday life. I go to several cancer boards but I do not post. I use to work with children who had cancer, but I can not any more.


I am upset with some very good people who use to post here also. They posted oh I am leaving because of the bitching going on, I am leaving because the board has gone straight to hell, I have heard all the reasons for leaving. I am leaving case so and so don't like me. Hell I have even said it myself. You know what all those excuses suck. Thatís just what they are, excuses hell I have had death threats, phone calls, and some really bad post, posted about me here, I use to cry about them, but now I laugh. Either you like me or you don't! I have to many friends here and too much invested to go anywhere, so I am staying.

You know whom I blame for the board going to hell so to speak, everyone here myself included. I blame all the people that have something to give to this site, that have a fear of being attacked, so they don't post instead they lurk. Lurking is OK unless they only post when they see something they donít like and thatís the only time they contribute, then to me that sucks. Lucking is fine, people donít have to post to come here. I blame the people who forgot what it was like to be a newbie. They found more than information, they found us, and they want to talk to us and post to us. They want to make a friend with another cluster head. They have read the information, but they want people to talk to, someone who knows the pain. They donít want to be on the outside looking in. What do we do. We post to them and tell them read the information on the side of the board. Thatís like saying that we don't have time for them. Sure we all get tired of saying the same thing over and over. You know what. I sure am glad when I came here people took the time to talk to me. Cause all your information and your friendship, sure got me through some hard times. It made me want to come back, it made me want to help. Donít we want them to come back. Maybe we are not giving all we could give to this site ourselves. We expect people to do on their own. Hell I was in bad shape when I got here, I could not do on my own.
Drummer remember , you called my doctor for me, your wife helped me get O2. DJ, Drummer, Margi , and a few other were up half a night with my family when I was real depressed. Todd, Kip, and Mike remember the nights you two sat up with me. Ic Bob he rushed home from work one night to sit with me on icq. I remember my phone ringing and a man saying "Hi this is drummer I am not a Internet wako, I want to help you". DJ remember the talk you and I had at that bar in New York. Remember the icqs that just said "Hi darling you ok?" Sometimes just are you OK from a friend that knows is all we need. We have to make friends to be able to ask if they are OK! I remember kip calling me one night and saying get back on the computer and talk to me or he was going to keep calling, you remember that night donít ya Kip? Bob P you were my pin pal every Friday and every Monday. I looked so forward to those letters. I am not a very good speller and never could join in on some of the scientific post that Jack, Drummer, Todd and a few others use to post about. One day Jack did something very nice. I replayed to one of the treads and Jack answered me, and even said my idea was cool, that one post made me feel smart and made me feel good. Did we all get so wrapped up in, the convention, O.U.C.H ,our own sites, that we just donít feel we have room for newbies? We donít have time to repeat things, we donít have time to be nice.

Who is to blame for whatís going on here all of us. There is not a lot we can do about personal attacks on the board except, ignore them. Ignore bad post and smother a good post, post under a good post. Post some humor, posts some tears, leave the bitching and moaning to the Jerry Springer Show. Its simple we are all to blame! Its sad that a bad post has more post than a call for advice! The personal attacks, we are to blame every time we answer to them.

The newbies donít know and donít understand where we are coming from. How will they learn and become apart if we donít all help them. Take the time people if you really are the supporter you say you are.


My doctor who I love dearly calls my cluster ď Migraine clustersĒ ! You only know what you are told. I am a simple person, the only reason you guys did not just me, is its easier for me to spell clusters than Migraines! Did any of you ever think its possible to have a cluster and a Migraine at the same time. Take it from me I have several times. Guess what! During those attacks, I can not stand light. I can not stand noise. You should try walking, itís a real bitch. You want to walk and move from the cluster but your Margarine says lay down, Itís a real bitch to have both at the same time. When a migraine comes aboard send them to HGS in a nice way thatís what that site is for.

The biggest problem on this board is people donít know how to say they were wrong, or they were sorry. You know if you do something wrong, make it right cause only you can. I have said I was sorry a thousand times , and it did not kill me, matter of fact it made me a happier person, and a new friend. We can all use a friend.


One other thing I have learned about viruses. They are not always, sent by someone you know. I have had three viruses sent to me. I have no idea where they come from. I have friends from Napster and other sites. A friend sent me a virus just this morning. They did it unknowingly! A virus had attached it to there address book. Viruses are all over the Internet and are being sent to people from people they donít even know. If you like your computer get a good virus protection. Donít always blame the person it came from.

Not anyone person is to blame itís us all! The only way this board is going to get back to the way it was, is if we all stop pointing the finger, and stop giving each other the finger. Instead hold out your whole hand in friendship, and a little understanding. Try trusting each other again.

Before anyone jumps me about this post, ask yourself this, what made you keep posting? What made this your home? Wasn't it the understand, and the support and the friendship, and the knowlege you recieved for this site and the fact you were no longer alone? What made you join O.U.C.H.? The feeling you were fighting back a demon that took part of your life away? Was it that you were involved in something great?
Was it you felt important? Then we need to make these newbies get involved and feel this way, and we know how! So less work together and do it!


I am holding out my hand to anyone who wants it! How about you guys?






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