Posted by Carl D (188.8.131.52) on March 11, 2000 at 19:01:38:
Well, last night I had an 8, and this morning a full-blown 10 that lasted an hour, but it's a little better than the previous night. My head is still sore, but not shadowing as much.
I'll tell you one thing: I am so grateful to DJ for creating this board. I don't think he quite understands the impact it has made on so many lives - including mine. I don't think I would be alive today if it were not for the love and compassion of some of you guys. Some of you have offered me tremendous emotional support, an encouraging word when I was completely shattered as a human being, financial support when I could not afford meds, an ear to cry into when no one else would listen, and have even given me strength through this electronic box to carry on. Dare I say - some of you have even carried me through the fire.
I have hit some snags in my book. At times I have felt like giving up on it - but then I think of Margi's words..."You may be the one who breaks this open to the public..."
I am working hard on this book. Though it is a work of fiction, everything about cluster headaches in it will be fact. At the back of the book I will provide a section of information on cluster headaches; information on clusterheadaches.com - O.U.C.H., information on how to become a member or make a contribution; and the book even has a special dedication too (You will have to get a copy to find out what it is.)
Not only do I owe it to myself to finish this book and try to get it published and available to the public at large - but I owe it to you...this story is about no one in particular but in some ways, it is about all of us. I want people to realize that this disease can hit anyone at anytime and, what would they do if they suffered with such a malady and no one cared.
I am more than grateful for you guys. I can't wait to get to the convention so I can hug each and every one of you.
Of course, throughout the year I have been on this board, I have been attacked by some people. Thats fine. I can deal with the morons and bashers if it means meeting people like you.
What else can I say? I hurt. I hurt alot. There is nothing you can do about my physical pain, but you all have been such an awesome emotional cushion. Thank you!!!
I am working on this book now like there is no tomorrow and it needs to be done today - though I am being very careful with it. I hope that one day people will be able to say "You got clusters? Oh man, I'm sorry. I've heard so much about those things, though I don't really know anyone who has them." That will mean that the public ignorance of CH will have been transformed into public informed.
Can't wait for August,
P.S. - Jonny, still no word on the SSI decision. Ran into some problems with the U of M's records dept - but got the MHNI records. Thank God. I keep kicking myself because at my court hearing, there were things I didn't mention that I should have and things I forgot about until later that may have been fruitful to the decision. In any case, I can't turn back the clock...only cross my fingers and hope for the best.
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