Posted by Geo (220.127.116.11) on August 29, 2000 at 07:07:52:
In Reply to: GEO I have only this to say.................. (long post!!) posted by Tracy on August 29, 2000 at 06:27:02:
Hon, first of all, lemme plug myself again and advise you to scour the board for my postings. You're not unique. I'm on welfare, my only insurance is medicaid, I just finished doing 1 and a half to 3 years in jail because I was addicted to crack cocaine, the only thing that has ever given me any relief from cluster headaches. While I was in jail detoxing my Ch got so bad I had for the first time in my life, siezures, and noone knew it, or gave a damned about it. Since I was released I 've had all of two short remissions and now the condition is worse than ever. The only tests I've ever had were CAT scans and medicaid doesn't pay for MRI's
or Thermographs. I can't just request to see a nuerologist; I have to be referred, via appointment, then wait for the appointment to see the neurologist and hope he knows what CH is when I do see him.
No you are not unique, and no, I never meant to suggest, nor, if you read very carefully (I even copied and pasted it in a second posting!)that anyone should limit the content or context of thier postings to the subjuct of pain or CH- That is insane, and silly, and dangerous. My message is, and was, and will always be, focused on cocientiousness in considering what impression is left by our postings. people come here in pain, in grief and in desparation and this place is like an oasis in the desert. I made my comments with the person who comes here looking for a human connection to identify with on the spot, hands-down regarding thier immediate condition. That can range from needing to laugh, or cry, or someone telling them that they have more to live for than thier CH and they don't have to eat a bullet. Considering all these things, is the exercise of concientiousness, not exclusion. My use of the word 'grime' is metaphoric, and is intended to illustrate the impression that I refer to. don't know any other way to make this clear, nor any other way to get folks to just comprehend what was said for what it was, and not what they think about it. The peculiar thing is that that one posting fueled an assault on me which has gone on long after I've resolved to leave the subject alone, and worse, it brought out in certain individuals an almost animistic territorial defensivness which only accented the importance of what I was saying. Not everyone who comes here is going to understand what this message board is. I didn't at first, and at times I still don't. I've had plenty of fun since I came here, being eloquent and pseudo-intellectual and pop-scientific and silly about the whole Ch business. Yet, I still say that it is important for us to realise and remember, in our pain-free moments, where we are, where we came from, and that we're no further away from another attack, nor any closer to a complete cure for this syndrome than that person who's just discovered that they really have a disease, not just a lot of nagging headaches, that they may have to live with that disease for the rest of thier lives, that there is treatment, which may, or may not work. I didn't know what a clusterheadache was until 1992, and I didn't believe it existed until 1998! Today i know it is real, and that there are others with it, and that, that, is what I tried to paint a picture of, that one person who falls into the rabbit hole and discovers a world that they don't know how to be part of but have to become a part of if they want to survive or know how to survive with thier disease.
And it is very silly to doubt that anyone in clusterland would bite the extended hand of friendship.
A kiss upon m'lady's hand and a bow. A pleasure to meet with you.
May the lot of us, and Gilligan, one day, make it off this damned island.
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