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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, September 12, 2011

Why did I keep letting that person back into my life?

I had a friend, who, every few years would find a reason to get mad at me. She would ratchet up the level of her anger and then suddenly announce "This friendship is over!" 2- 4 months later she would call me. "I went to the store the other day and bought a bunch of bananas." she would say or some other such triviality, as though there had been no breach.

Each time I was torn. It was wrong of her to behave as she had but my need for friendship overrode my commonsense. Each time I replied "Oh, were they ripe?" and continued the pretense. Then we would fall back into our old relationship until the next time she decided it was time to end it.

The last time she did this, a few years back, I realized I had to take her at her word. When she called me at the appointed time, 2 - 4 months later, I was cool to her. She called 2 more times before realizing I had agreed with her, the friendship was over.

It was a sad thing. We had been friends for about 15 years but sometimes reality needs to be acknowledged. The friendship had come to an end.

How often have we stayed with doctors, medications or agreed to continiuing therapies even though we knew they had proven not to be what we needed?

When I lived in NYC I started seeing a neurologist who did not always 'believe' in my pain and behaved in ways that seemed a little 'off' (to me). My Philadelphia neuroophthalmologist suggested I have a doctor in NY, and I knew no other one, so I felt stuck with this man. I stayed with him long past the time it was healthy for me to do so.

I get 'tics' from my anaesthesia dolorosa (phantom pain). Unlike my trigeminal neuralgia tics these were severe itching sensations, directly under my nose.

About a week ago I got one that was horrendous: itching, tingling, pulsating almost, just overwhelming and unbearable. Very few times have they been that bad. This one was worse because within a few seconds the whole side of my face was involved and then the side of my scalp as well. It was terrifying, the sensation 100fold the way the stimulation, which I rarely feel, feels.

Using the computer that came with the implant I made some changes.

The implant had been placed in 1991. Although now and again I would change the polarities (the plus and minus - like in a battery) and the amplitude (how much stimulation I got) I had never turned it off and never really played with it. (I have the main computer which most patients do not so I could do a lot more changes on my own.) This last pain forced me to reconsider how I used the implant.

I turned the stimulation level down and still got some of the tics. I turned it down further and got less and the intensity was less. I have it almost off and am getting less still and the sensation less.

It occurs to me that I have always been afraid to turn it off. I keep going back to it, to tweak and fiddle with, in hopes that the pain will be gone, or lessened, so I can use my eyes more (and work, always work - that hope has never left me). But, if I turn it off, that is it. There is no other therapy left to try, I must unconsciously think, as if turning it off means I have closed off all possibility of using it again. Of course that is not true. All I would have to do it is turn it back on.

The friend, the doc, the implant. How many times has the truth stared me in the face - do not go back, find another doc, turn it off - but it is more familiar to continue with what I know?

How often do we let fear stop us from doing what we know is the right thing to do?

How often do we welcome someone or something into our life, or back into our lives, because it is easier to do than looking the unknown in the face and saying, 'The heck with you fear'.

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