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On my way home from Chicago i had a long long conversation with this woman who was in the production of the television show Survive. She asked me what i had been doing in Chicago. I told her i have a chronic disease and met with others like me". She was very surprised and wanted to know more. i told her briefly my first six years without diagnose, my way from there to present time. And CB. "WOW" was her response,  and then she told me she had a good friend having Ch, and started to write down what might help him. Also she wanted to know about the psychological aspects, how to cope and live with this. She said to me "when i was in my early twenties i thought allot about my career and all the time i felt that other people didn`t do anything for me. Then i realized i didn`t do anything for myself or anyone else. I realized i needed to do things to get my life the way i wanted it. You understand that, that is good for you, better than you know". Then she asked me "if you never did get sick, if you could go in a time machine, what would you do"? I told her i would go see the world. All over the world, i would not worry so much about anything really and just live and explore the world, just exist.  She then answered "well but your doing that now, you can`t go see the world in one day, you have to do piece by piece, like a puzzle, so your actually realizing what you dream of doing as a person not having a disease. And a person full of worries wouldn`t do that. How fantastic. Good for you". What a person, amazing person. I`m so grateful she said these things to me. Cause afterwards i have been thinking "wow yes"!!! How lucky we are to get to have conversations like this, we wouldn`t have if we never experienced CH. And she topped the hole thing by asking "so, what i need to tell my friend is Magic mushrooms"?

Today i had visit from a girl i got to know many many years ago. Haven`t seen her for a long time now. She came in and was completely shocked and horrified over this patient they had in the ER. She works in the treatment unit in ER, she`s used to dramatic situations. But she was shocked, she told me nothing worked for this patient. I asked how the patient acted, since she was so horrified and my experience in ER is that they don`t care much..... She looked at me and said it was just so clearly this person was in horrible horrible pain and we couldn`t help. What she wandered about wich they didn`t understand was the fact that the patient refused any type of reg pain meds. After that day she started to ask doctors and older nurses thinking they been in ER for years and must have seen this before. She found ONE person who heard about CH before. ONE!! And everything she knew was O2 might do something. then she came to think of me. So today i showed her my OnDemand valve and talked about CH and what might help us. And i told about CB. LOL.

Feeling very lucky today. Very lucky. CH is a door opener.

Wishing everyone sweet dreams



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  • 1 month later...

That's Gnarly!  I am going to Vegas next May or June to a personal training boot camp through my school.  I have never been.  Hopefully they are around the same time, either way, I see there are several different types, times, and other places with these conventions.  It would be very nice to meet and greet some fellow "clusterheads" [i like that term].  What excactly does KIP stand for (mean)?

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