Posted by Bill McCuistion (18.104.22.168) on October 01, 1999 at 01:09:19:
In Reply to: Hold on Bob posted by Michelle on September 30, 1999 at 23:18:01:
I am new to this board, but not to CH. I understand what the Devil-pain is and what it does to the victim and those who care for them. I understand the anger, fear, resentment, denial, hopelessness and helplessness involved.
Michelle, I agree with you, snobbery in a place like this is Bullshit.
CH is a long-term disease and those in the community are expected to be supportive. There is an interesting phenomon which sometimes arises in mental institutions. These patients, rescued from the jaws of death and insanity, living in close community, start to compare diseases. One of two things happen: (1) they bond and begin to help each other cope and recover as best they can, or (2) they become snobs about their diseases and miss the whole theraputic point of being together in the first place. If it weren't so sad it would be comical.
As for specific treatments, who among us knows, for sure, what works and what doesn't, when or why. I believe that my clusters mutated from ordinary migranes. I'm not proud or embarassed. It is what it is, and it ain't what it ain't. Anyway, being that mine seem to change I can never be sure exactly how to deal with them. Given limited time and resources, I choose my weapons carefully, knowing full well the consequences of making a mistake in the battle against this Devil-pain.
I listen to my body, the part that's not trying to kill me, and on a case-by-case basis, more or less, decide what to do. Sometimes I feel like someone else ought to crack my neck, sometimes I don't. Sometimes it works, sometimes it don't. It's mostly a crap-shoot from what I can tell.
All I know is that I have to do something, take some action. If not, it will win. Now, don't get me wrong here, I have a way of pissing folks off and running them off. I'm trying to improve on that.
At least here there seems to be a community with a common focus on something really important. Like staying alive and living with the Devil-pain until each of us finds what works best for us at that point in the disease.
On a slightly related subject: Is there a good glossary of CH jargon that I missed in joining this group? You know, with a good jargon we can talk in code and know what each other is talking about with fewer keystrokes and faster understanding. We could start out simple and get more elaborate as we went along. One group could follow a technical track: home in on the symptoms, diagnosis, treatments, prescriptions and outcomes. Another group could work on the emotional and soft-therapy side. Pretty soon, we'd have this thing beat. Or is it in the archive already?
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