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My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Monday, March 19, 2012


One of the main suggestions we hear in chronic pain support groups is 'keep a diary': when the pain started, what level, what increases it, what decreases it, and so on. It is a terrific idea; making it easier for patient and doctor. It may help with the diagnosis, I won't get tongue- tied or even if white coat anxiety hits, I will still be able to remember all I want to say because it is there in black and white.

It never occurred to me that after surgery/treatment/procedure, successful or not, it continues to be a good idea. I assume I will remember the good, and the bad I want to forget.

Whenever someone asked about my current implant, "Is it working?" I always replied "I'am not sure. Maybe."

Now that it has failed there is no question. It was definitely working.

I wish I had thought to keep notes. The pain starts now when I get up in the morning. I had forgotten, when the implant was on, that I only had pain when I used the eye. If I did nothing, the pain stayed put. Reading, etc., that set it off; but I am noticing that my 15- 20 minutes is sometimes a lot less, and when I let the pain amplify til it is unbearable it takes much, much longer before it has quieted down to an acceptable level. I also take a lot more codeine.

The failure of the implant makes the information less useful in terms of benefit or lack of it but before it failed I always questioned it: Do I even need this thing? What's the point? I really don't think it's helping. (And yet I would never have let them take it out, just in case.)

Had I started a journal, keeping it from before the implant to now, keeping one from the onset of the pain even (although I don't know where I could have had room for 30+ years of diaries) I would have had a much better feel, not only for when and what worked but a wonderful reminder. This, this, and this helped, even when, especially when, everyone, including me, had given up.

The diary is an historical document of the pain, a way to insure correct recall but it can also assure us, comfort us, remind us that there was, and is, hope. And when all the possibilities seem over with and gone, it can be a reminder of all the times we were wrong.

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