Posted by Cranpain (188.8.131.52) on May 01, 2001 at 03:02:55:
I am writing this at 2:00 in the morning, because I cannot sleep. I hope most of you will back up enough to read it. Many years ago, while leading a quiet and rather interesting life, I awoke one Saturday morning and entered a nightmare world that I never knew existed to that point. I will never forget my first cluster attack, which was soon followed by many more. I like to understand things. I began a long and fruitless search to discover what I had, who else had it, and what to do to relieve it.
About three years ago, I found this site. After carefully studying all the other information, I began to monitor the message board. Some of the names from then I still remember; Sailpappy, Jonny, August, CarlD, DougL, Elaine, etc. After monitoring the board for some time, I tentatively entered my first post, describing my symptoms and tribulations through the years. I was warmly recieved, and made to feel welcome. There are no words to express how I felt when I read the responses to my post. After all the years of being alone with the pain, I had found some others who totally understood!
The road has been bumpy since then. I have progressed from episodic to chronic, with very little relief.Even this board has been a bitter disappointment at times. I have seen the God that I worship maligned, the president that I voted for vicously attacked, and the usual "all southerners are gap-toothed tobacco-chewing ignoramuses with rifles and deer antlers mounted on their pickup trucks" mentality touted here. Many times I have considered leaving this board, but then I would be alone again, with the pain.
People express themselves differently. Some resort to vulgarisms, machoism, or wisecracks. Other use "kisses and hugs", each according to personality and ability. I have become old and wise enough to realize that every one is not going to worship, think, vote, or talk like me. I must accept the differences in people. If I, as a southern-born religous right-wing radical (currently the most maligned group in America), can do that, why can't each of you?
We must protect our identity. The surest way to lose all hope of a solution to our problem is to be absorbed into the general "headache" culture of America. But, if someone came to my door looking for a neighbor, I would simply direct him/her to the right place. I have seen that done here, and appreciate it. We must also protect our friends and associates from the "wolves" who search out those in pain in order to make a profit from fake cures and programs. Then I'm ready to fight.
One of the worst probems psychiatrists deal with is patients who inflict damage on themselves. Yet here we are, hacking each other to pieces when the real enemy is not us. (You may insert the usual "Why can't we all just get along?" crack here, if you wish). If you must be angry, be angry at the drug companies who lovingly embrace the migraine and tension sufferers, and totally ignore us. Be angry at the insurance companies who mete out blessed relief, so that profits can look good on a quarterly chart. Be angry at doctors who don't know their elbows from a hole in the ground, and continue to treat you as if you had migraines, or are just a junkie. Be angry at the idiots who tell you to chew whole pecans to cure your headache. Be angry at the clowns who come here and try to sell a "sure cure" to unsuspecting people in pain. But do not destroy this board.
If I lose this board, then my worst fear has come true. I am alone again, with the pain.
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