My book.

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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Wednesday, August 17, 2011

Ben's friends is no friend of mine.

I woke up this morning obsessing after falling asleep to the same thoughts. Going through my email this morning I found 2 emails sent to me by the admiinistrator of this Ben's friends group, Living with TN. I read them, and responded. What she wrote so upset me that I am still shaking. The posting today is my sounding board and catharsis (I hope.).

I was 'suspended" and accused of spamming and harassment because I asked to have my book listed as an external link to their article they put on Wiki about atypical facial pain. I say accused because when asked to provide proof of either/both she could provide none.

She told me they had "unearthed" my blog. They, she and'other administrators, although only one other named in one of the emails she sent) had decided that my mention of it was an 'advert' for the book. I assume this was her basis for the 'spamming' complaint. The only problem was they obviously never bothered to look further to see that the blog name is not the same as the book and this blog has nothing to do with the book.

She had no basis for the 'harassment". Instead she wrote me an email- to my personal address- her fourth, to tell me if I replied it would be considered 'harassment' since I had already sent 3 emails(I could only find 2) to the administrators of the site. All were in direct reply to her email but she wanted to find an excuse after the fact for the "permanent" suspension. (She put permanent in her email. The site notification merely said 'suspended".)

Once again, and I did write a short post earlier when this first happened, it appears it has to do with the book.

Want to know what it is like to live with this pain, day after day, and to fight this pain, day after day? My book does that. The author of the article is a researcher of research. Interestingly Stef, the administrator who wrote me, did 2 things: she defended the author of the article in her email for some unknown reason and said part of their agenda was to erase the idea that atypical facial pain is not psychosomatic; but a large portion of the article seemed to indicate to the reader unfamiliar, and familiar, with the pain, that this is a psychosomtic disorder and not physical.

It is bad enough that I have to live the pained life. It is bad enough that I have to fight the pain every day, like so many of us. Support sites should be support sites for the members not for an agenda.

Stef indicated she had not read the book or checked out the excerpt. This is not a book on how much fun it is to live like this. I lay bare the most intimate parts of my life so the reader can feel the pain we go through living like this. "Red", the researcher of the research and author of the article had mentioned in one of his posts at the site that he was not looking for 'self-aggrandizement'. It appeared to be pointed at me. If I wanted to self-aggrandize the book would not read the way it does. I would have made myself the hero.

Stef told me I could not have the diagnoses I do: trigeminal, atypical trigeminal neuralgia, and facial pain. "You cannot have all three." She ascknowledged she is not a doctor, I do not even know if she is a medical person, but I informed her those were my diagnoses by neurologists,etc. It was telling she never replied to that information.

I am tired of people lying about me. Ben's friends is no friend of mine when they work to add to my pain rather than try, through the support they purport to offer, to help diminish it.


  1. Carol,

    What I am getting from all of this (and I have READ the book)is that people are threatened by it because it's honest. It tells exactly what the medical profession did to you and they simply can't have that. You know they all protect each other!

    Any site that doesn't look into what you are sending them isn't worth your time. And for her to tell you that you "can't" have those diagnoses...well, has she seen your medical records? Gone through them with a fine tooth comb? Talked to your doctors? No. So how the hell does she know you don't have all three diagnoses? Your book makes it pretty clear that you DO have the diagnoses.

    I do not understand why everyone is so upset about your book, other than to think that they are all trying to protect the doctors who permanently injured you. Keep on writing and don't let it get to you. Just realize that every time something like this happens, it means that someone is threatened by the truth.

    There's a saying. The truth shall set you free.


  2. Hi Chelle,
    Just saw this as I was about to go offline. It always seems to come down to Jannetta cause this researcher at the site was at TNA I believe at same time we were having our todo about the book, ironically it is (or at least was) in the bibliography of the trigeminal neuralgia sourcebook (think that is the title) and the last post I wrote there before I was supended was that I knew he was familiar: we knew each other over there at TNA.
    Yeah she told me you "can;t have all 3." Once they become administrators they tink they are doctors I think. (funny thing was this site had problem in past with administrator (Ro) who was giving out bad info. I left and Ben who owns these groups emailed to tell me she was gone and would I come back (sent not just to me)
    Thats the sad part that it is not just the medical community but these little napoleands who supposedly make these groups to help the sufferers.
    I hope so. I didnt want to use blog for this but just so mad and if it hasnt made me free I do feel a little better ((*_*)) and alwasy better when I hear from you.
    gentle hugs.