Cassidy Posted May 21, 2010 Share Posted May 21, 2010 I removed my post, because I didn't want anyone to miss Bob's. I had posted, "tears of rage. That's all I have." And that still stands. I am so full of anger about the way this condition "CH" is treated. I'm angry because we have to ask the question. " should I tell my doctor, what I have decided to do?" And then we wonder and worry if anyone finds out about the alternative treatment, could we lose our job? Could we go to jail? I have the answers for myself. The help I have found using "our medicine" is worth all the risks. I had visions once about going to court to prove that point. It is a sad thing that we take the poisons that can ruin our hearts, kidneys and brains. And at the same time we tell ourselves when I retire I will try the mushrooms. When my kids are out of the house I will try LSD. When I get older the curse will fade away. Meanwhile some very valuable years are fading away. You know, I might be the oldest person in this club and the attacks did not disappear when I hit 65. Lucky for me I found help thru ClusterBusters. I still have 2 cycles a year. Most are easy, some are still very bad. I no longer can remember a kip 10. I no longer have an attack longer than 20 minutes. I'm not afraid of CH. I am afraid that my medicine might not be around some day, that would be a crime. I don't know if BOL will be available, but I have hope. I'm so sad that 24 year old boy is gone.  Leslie Quote Link to comment Share on other sites More sharing options...
shaggyparasol Posted May 21, 2010 Share Posted May 21, 2010 Yep, that kind of stuff makes me angry and sad. I send my sympathies to his family. --Shaggy Quote Link to comment Share on other sites More sharing options...
Guest Posted May 21, 2010 Share Posted May 21, 2010 I just can't stop crying here Leslie. This boy's death has really done me in. Your so right in everything you've wrote. CArl... Quote Link to comment Share on other sites More sharing options...
birdman Posted May 21, 2010 Share Posted May 21, 2010 So sad. It is the reason I dont own a firearm as I fear the same results. My sympathy goes out to his family. A heartbreaking story that I think is all too common amongst us sufferers. :'( Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted May 21, 2010 Share Posted May 21, 2010 I can't find the words so I'll just add my tears......my thoughts and prayers go out to Will's family. DD Quote Link to comment Share on other sites More sharing options...
mikey-de Posted May 22, 2010 Share Posted May 22, 2010 If only there were a way to give this curse to every lawmaker and every doctor that scoffs at our pain...I would give it to them all. I'm sad for this whole world and I'm sorry for your loss. My heartfelt sympathy goes out to every family that has lost someone to the beast...words cannot describe the sorrow and anger I feel.... :'( Mikey-de Quote Link to comment Share on other sites More sharing options...
davidj Posted May 22, 2010 Share Posted May 22, 2010 Mikey-de, Well said and ditto from me. :'( Quote Link to comment Share on other sites More sharing options...
Bonkers Posted May 22, 2010 Share Posted May 22, 2010 What mikey-de said. Right on! Odd feeling rage and sorrow together. Quote Link to comment Share on other sites More sharing options...
johnny Posted May 23, 2010 Share Posted May 23, 2010 i'm glad we can all communicate with each other. you guys remember what CH was like before we knew what it was or that there were more than one of us? thanks for being there Quote Link to comment Share on other sites More sharing options...
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