Psiloscribe Posted July 30, 2010 Share Posted July 30, 2010 I just wanted to thank everyone for participating on the message board. I think that all the different posts and different people participating are important to making this a successful place. Ya know, after over 15 years on online support groups, I've seen some wonderful things happen. Its not just the people that offer some of the more "expert" advice or those that post alot, that make a board successful and vibrant. I do appreciate those that are posting the more technical stuff. Sometimes though, I've seen the most innocuous post make a huge difference in someone's life. A mother mentioning some silly thing their kids did just might catch another mom in a blue mood and being reminded that things will get better and be worth it going on. A truck driver thinking he can't go another day sees a post from another truck driver with a smile on his face and thinking if he can do it, so can I. (Just examples. Any similarity to real people is purely coincidental and unintended Sometimes it doesn't take much to trigger some hope for a brighter future. Just logging on and seeing others posting reminds people they are not alone. It doesn't need to be a post about the latest research, or the best set up for 02. It's just..being there. Sometimes I think that doctors write us new prescriptions just to give us a little hope and to get us through another week, another month. You are writing prescriptions right here, every day. Only positive side effects and no rebounds, lol.... Thank you Bobw Quote Link to comment Share on other sites More sharing options...
TXClusterHead Posted July 30, 2010 Share Posted July 30, 2010 Thanks, Bob, I really needed to read this, this morning. Had a bad day yesterday and it's inspirational things like this that make it all it better. Been dealing with the longest cycle of my life, still hasn't ended and although I try to keep a positive attitude about it there are times it can get me down, like right now as I'm coming down from another cluster and yesterday afternoon, as I went to go pickup my growing kit, the one I've been waiting on for 2 weeks, the one that I thought I was going to get a week a half ago because I paid for expedited shipping and then on top of that, I didn't even get to track it 2 days after paying for it because Canada Post doesn't track their packages once they hit the US border (keep that in mind for future orders from Canada, never knew that),because they've left me a delivery slip telling me their sorry they've missed me, the post office tells me they've now suddenly lost track of my package and can't find it > :'( . But you know what, like you said, Sometimes it doesn't take much to trigger some hope for a brighter future. That's all I want. Some hope for a brighter future. Today is a new day. My headache has passed for now and hopefully I'll get a call today saying they found my package. Positive vibes, positive vibes Quote Link to comment Share on other sites More sharing options...
Chad Posted July 30, 2010 Share Posted July 30, 2010 Bob, folks like yourself and DJ from CH.com are the reasons I got my life back. Just being able to talk to others with the same condition has helped me tons. Everybodies experiences and info has changed my approach to dealing with this disease. All I can say is THANKS!!! All the best! Chad Quote Link to comment Share on other sites More sharing options...
birdman Posted July 30, 2010 Share Posted July 30, 2010 Sometimes I have a very hard time writing the way I feel. That was well said Bob and I couldn't agree more about the wonderful job you and everyone else has done here. Thanks to everyone for sharing that dark and bright times with us. It makes us better people. Quote Link to comment Share on other sites More sharing options...
Jsmacks Posted July 30, 2010 Share Posted July 30, 2010 I remember first falling on some cluster headache message boards. I believe it was first Ch.com then CB.com, and all I remember is crying and thanking God that I'm not alone in this world of pain. Because of the pain we share, I believe there is a connection established that is very strong. It's one of empathy, and then support. Thanks for this everyone! I too thank you. I don't know what I'd do without knowing that when it's BAD, I can go hear and remember, it's BAD for us all, and that there. is. HOPE. So I too thank you all, even though I'm a bit new. -JOrdan Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted July 30, 2010 Share Posted July 30, 2010 Just WOW!! What a wonderful post Bob!! Just want to say thanks to you and all of the other "pioneers" whose work has made it possible for the CH community to have this board to come to and find that "Hope" and then be able to share it with those who come after us!!! DD Quote Link to comment Share on other sites More sharing options...
alleyoop Posted July 30, 2010 Share Posted July 30, 2010 Fantastic Thread!!! "Thank You Bob!" and "Thank You!" to every one of you that shares!! bb Quote Link to comment Share on other sites More sharing options...
Guest Posted July 30, 2010 Share Posted July 30, 2010 You have a way with words. I'm gonna get you to do my biography auto thingy.. Quote Link to comment Share on other sites More sharing options...
bigfoot Posted July 30, 2010 Share Posted July 30, 2010 Im so glad to find you guys.Ive had these things all my life and thought i was alone.when i found this site i cried.every body her been so helpful and supportive.ive learned so much here.Thanks for being here Quote Link to comment Share on other sites More sharing options...
Jeff_007 Posted July 30, 2010 Share Posted July 30, 2010 Ditto to everyone!! When I found this place and discovered that I was not alone was like picking myself up off of the bottem of the deepest darkest hole to the middle of the earth and starting to climb back out. It gave me the strength to carry on and fight!! I thank you Bob..and that goes for all of you!! I could just cry right now dammit!! Quote Link to comment Share on other sites More sharing options...
johnny Posted July 30, 2010 Share Posted July 30, 2010 without these message boards we would at the mercy of our doctors. doctors are good but a doctor doesn't the time to answer every little question you may have about this ailment. without the chance to interact with all of you i would not have nearly as much information as i do now nor would i have anyone that identifies with what i go through day to day. even though i haven't had an attack in over 2 1/2 years i am certain i will in the future. i thoroughly enjoy getting on these message boards and exchanging ideas and i thoroughly enjoy the company we all share here. a sincere thanks to all of you Quote Link to comment Share on other sites More sharing options...
Bonkers Posted July 30, 2010 Share Posted July 30, 2010 Hi All, This board has become an odd sort of home where folks who are connected by the same familial, genetic defect can come together to share successes and failures, commiserate with those having a particularly nasty time of it, pass on what we've learned that can help others and in general learn how to manage this awful disease together. I'm proud to be associated with all of you. If we had never found this site, my son could very well be dead and I very likely would have fallen over the edge. We love you guys. Together, in the not too distant future, we're gonna win. We're gonna learn how to comfortably manage these HAs for anyone who drops in with a desire to eliminate CHs from their lives. We'll be able to ask the right questions, provide the right answers and suggest the right remedies. We're getting there. Ron Btw - Michael just finished 7-1/2 days of total PF time. He's still not sure it's come back so we're waiting till he's sure b4 we dose again. 7-1/2 days and maybe more. Cool, huh? Like I said above: we're getting there. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted July 30, 2010 Share Posted July 30, 2010 Btw - Michael just finished 7-1/2 days of total PF time. He's still not sure it's come back so we're waiting till he's sure b4 we dose again. 7-1/2 days and maybe more. Cool, huh? Like I said above: we're getting there. Fantastic news Ron!!! May Michael continue to stretch it out further and further until he only needs to maintenance dose once or twice a year! This is not as much of a stretch as it sounds; others have done just that, including our fearless leader. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted July 30, 2010 Share Posted July 30, 2010 Thanks, Alleyoop for your good wishes. Your vision of our future is exactly ours. Quote Link to comment Share on other sites More sharing options...
raquelinkansas Posted July 30, 2010 Share Posted July 30, 2010 Thank you Bob! And thanks to every person who has posted anything on here! when i found this site i cried me too! without the chance to interact with all of you i would not have nearly as much information as i do now nor would i have anyone that identifies with what i go through day to day. ditto! Quote Link to comment Share on other sites More sharing options...
Carole Posted July 30, 2010 Share Posted July 30, 2010 Thank Bob!!!!! Endless thanks to the entire Cluster Buster family. I cried hard when I found this site. :'( I had borrowed money to go to a doc and get 02. I got it at like 5:30 in the evening the Friday before the 4th. I was 2 weeks into my cycle and getting hit with 8,9,10s. By 2a.m Saturday the tank was empty and the medical supply place closed for the weekend. I found this wonderful place and read somewhere that I could go to the fire station for help. They filled my tank and I rationed until Tuesday. This site has brought me relief, knowledge and understanding. Clusterbusters will never leave my tool bar. Carole Quote Link to comment Share on other sites More sharing options...
Angel Posted July 31, 2010 Share Posted July 31, 2010 THANK YOU BOB !! Clusterbuster is a lifesaver What a great place to be ! Everyone is awesome !! Quote Link to comment Share on other sites More sharing options...
johnny Posted July 31, 2010 Share Posted July 31, 2010 Btw - Michael just finished 7-1/2 days of total PF time. He's still not sure it's come back so we're waiting till he's sure b4 we dose again. 7-1/2 days and maybe more. Cool, huh? Like I said above: we're getting there. see there. anytime we spent on this board is time well invested. this is great news! [smiley=thumbsup.gif] Quote Link to comment Share on other sites More sharing options...
tingeling Posted August 4, 2010 Share Posted August 4, 2010 Hi It`s been 8 month`s since i joined this site. If i should describe this site in one word, i would use lifesaving. I have said it before, but i will say it again. I was ready to leave. This place saved my life. And it also give me hope. Everytime i look at my daughter, when she`s asleep, i look at that beautiful doll and the innocence. It`s like she breaths out pureness. You want to protect your child to all what is not good in this world. Knowing the fact, that you may have transferred this is.... You can`t leave, just because of that. If i could wish for one thing in this world, i pray for it everyday, please, let BOL on the marked. And if it wasn`t for Bob W, and the people dearing to spread the word, this couldn`t have come to be a hope for my daughter. I find this place the warmest place i know of. It is a part of my daily life, the place where i also see as the place my daughter in the future maybe will have to know of. And if so, i will do my best, like others did with me, and hoping it will continue to be such a wonderful place. For the those who need it now, and the ones in the future, and that might be our children. So thank you all, for doing all that I am so grateful to all of you, and thank you all for letting me take part in those big changes in life Ron That is wonderful to hear. I`m so happy for the two of you. We came in almost at the same time, didn`t we? Quote Link to comment Share on other sites More sharing options...
alleyoop Posted August 5, 2010 Share Posted August 5, 2010 I find this place the warmest place i know of. It is a part of my daily life, the place where i also see as the place my daughter in the future maybe will have to know of. And if so, i will do my best, like others did with me, and hoping it will continue to be such a wonderful place. For the those who need it now, and the ones in the future, and that might be our children. Very well said Tingeling!!! My children's and future grand children's futures are what has kept me active with ClusterBusters through the years. In my mind, they are the hope for CH! bb Quote Link to comment Share on other sites More sharing options...
davidj Posted August 5, 2010 Share Posted August 5, 2010 THANK YOU BOB !! Clusterbuster is a lifesaver What a great place to be ! Everyone is awesome !! Can't add to that and that says a lot. David ;) Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted August 10, 2010 Share Posted August 10, 2010 So thankful . . . . .for all of you . . . .but, especially you, Bob Quote Link to comment Share on other sites More sharing options...
Mad6string Posted August 10, 2010 Share Posted August 10, 2010 I can honestly say that if it weren't for you Bob, I wouldn't be here to say thank you for all the AMAZING work you do. I thought I was at the end of my rope when you came into our lives. With all the knowledge you empowered me with and the personal support you gave me, I now have the will to keep up the good fight and maybe be able to help a few others find their way through the darkness we all walk in. There are not enough words to express my gratitude. As my wife and I sit here in tears of joy, all we can say is thank you from the deepest places in our hearts. You and all that have helped me (you know who you are ), have given us a life that we thought was a distant memory. May you be held high, my life was not extinguished because of your bright light. You are truly an angel. Mad6string Quote Link to comment Share on other sites More sharing options...
birdman Posted August 11, 2010 Share Posted August 11, 2010 Great post madstring!!! You should note that you too have been the bright light for others. It is a "pay it forward" kind of thing. Love this place and everyone on board!! Quote Link to comment Share on other sites More sharing options...
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