Thoughts you should keep to yourself.

I was abused as a child. I have no memory of my childhood. I do have all the signs and symptoms of someone who was abused. Others have circumstantially validated it.

Why in the world would I write about this?

One of the signs was being afraid of touch. If I dated in high school it rarely went past the first date. As soon as an arm went around me or worse still I saw a kiss coming, I was as fast as an eel in making my getaway. I had no idea why I froze at the moment of a hug or something more. I wanted to date, but had no idea how to do it: how do you have a relationship when your body tells the other person, don't you dare touch me?

I was not aware of my reaction until I was doing CAROUSEL in a dinner theater. I am not a dancer but as a member of the chorus we did choreography.

At one point the women stood at the lip of the stage. The men stood behind us. We sang and did some moves, I do not remember what - but this part I vividly recall. Your male partner lifted you up and then brought you back down. All the other men did just that. My partner, Lou, a very strong guy, went a step further. He literally threw me into the air and then caught me. Every show I knew it was coming, and I trusted that he would be there, safely bringing me back down to the stage.

After one show Lou was standing next to me. He put his hand around my waist. To my surprise he quickly removed it. "Everytime I touch you, you flinch." I could let him physically catch me when it was a public show. Privately, I recoiled at the merest attempt at a touch. Until he said it I was completely unaware I did that.

Trigeminal neuralgia pain is usually triggered by touch. Mine definitely was. I do not know if it is true for every disease but for those in chronic pain the question is often asked "What did I do to deserve this?" "Is the pain related to something psychological?" It is a normal question since most pain patients are often disbelieved, told "It is all in your head." I was told that. The depth of the pain told me differently.

It took about a year or more to find the doctor who told me my birthmark, the one on half of my forehead, exactly where the pain was, was a sign of a birth defect. Most birthmarks do not change color. Any time I was joyous, angry, embarrassed: almost any highly charged emotional state, it turned bright red. That was because of the blood vessels that fed it. And a sign of all the dozens, if not more, extra blood vessels in my brain. They were the cause of my trigeminal neuralgia.

No question why I have it. I have a birth defect, one that I can see. But then I think, I am afraid of touch, and now I have tn which forces me to be afaid of touch. In the early days, if the thought came on a relatively good day I thought how ironic I do not like to be touched and now I have this. On a bad day, even knowing the anatomical reason for my pain, I wondered was it something I did? I know it is not. It is mere coincidence that these 2 things: being afraid of touch and being afraid of touch, happened to me.

I want to get over the fear of touch. At my age most people would have had corrective life circumstances. For me, the pain came before I could experience touch from someone trustworthy. Even though the touch induced trigeminal neuralgia pain is gone, the fear is still there - I think this is true for everyone who has some kind of problem that is set off by something specific. Does the fear ever go away? Maybe not, but I think when life shows you that the fear is no longer valid it subsides, fading into the background.

My TN touch pain fear resides farther and farther in the background. My experience, my corrective life experience, shows me the touch pain is gone. I just wish I had, or can have, the corrective experience(s) that teaches life itself is safe. I am way out of my teenage years. I hope it is not too late.

Optimism bias vs Groundhog Day

A story in Time magazine was called The Optimism Bias*. It spoke to what I see happen in my life, much of the time.

I wake up. I have yet to use my eyes. I feel fine. It's today. Today it will be fine. Today I will be fine. Then I stretch. As I do my eyes move in the direction of one of my arms and then up to the ceiling. Oh no, I think as my face scrunches up in an expression of distaste, hurt, disbelief, some anger (some days more than some). The pain is still there. But it was supposed to be gone by today.

Most of my life is also like Groundhog Day, the movie.

I want to have somewhere to go, someone to play with, somebody to do things with. I want those things but I also do not want the pain.

I am finding as I get older I am more loathe to do things that I know will bring on the pain. Go to the store today? Even though it is only by myself, I find the answer is often a No. I do not want to go, look at all that is there and by doing so set off the pain. I hate staying in but I hate the pain and the drugged sensation even more. So today I stay in. Tomorrow I have somewhere I must go, and want to go. It is to a picnic but the dread is also there. How painful is this going to be?

Everyday, the same. I have the hope but I cannot repress the truth. I put it out to the Universe: Please, let the pain not be there tomorrow. The Universe does not answer, not about this part of the pain.

So it is strange. Because I still go to bed each night, expecting that I will wake the next morning, that expectation an article of faith, an act of optimism. Unless we are at the deepest level of despair the thought of another day brings the chance of new experiences, new possibilities, new life, a day without the pain. Optimism.

My optimism goes even further. I see what I often think of as an idiocy inside myself. How can I still think tomorrow will be different? And sometimes an even stranger and more optimistic thought: It will be over, almost as if none of this had ever happened. I will be back to where I was when it started. Not necessarily 30 years younger, which would be nice, but at a point where most of life's possibilities still stretch before me.

Even when it seems the stupidest of thoughts, it is the optimism that lets us, that lets me, put my one foot in front of the other.



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*Here is the full article:
http://www.time.com/time/health/article/0,8599,2074067,00.html

Interpretations.

I lost my singing voice after the neck surgery I mentioned a few posts back (My neck is held up with 2 clamps and 12 pins). I was a soprano who sang in the high range. After the surgery I was a very, very deep bass.

A number of years ago I visited a friend of mine and her husband. He likes shooting guns. I am very pro-gun control. John (pseudonym) insisted "How can you be against guns when you have never shot one?" I refused but, after his dogged persistence, I took the gun. I pulled the trigger, at the sound of the Bang! my right ear immediately started ringing. It continued for about half an hour. I lost most of the hearing in it. It was only when I realized I had become one of those people who smiled and said "That's wonderful." only to find out the person with whom I was speaking had told me their dog had died.

I went to an ENT doctor (ear, nose and throat). I told him my story: I shot a gun and I could no longer sing a solo in the church choir.

I read his chart note a few years later. "She no longer accepts singing engagements. ... She lost her hearing in a gun shooting incident." Who is that person? A woman who sings professionally and was involved in some sort of gunplay? Instead of a woman who sings in church and once shot a gun I sounded like a woman of romance, intrigue and mystery. I wish that was me.

My left eye usually has a lot of lubricant underneath it. It dries out because of the paralysis and inability to close well. I use artificial tears sometimes up to 10 - 15 times a day.

"Do you want a tissue, your eye is tearing?" "Please don't cry." "I had Pink Eye. Have you tried (this drug?)." One woman took my arm and helped me off the train, deciding, for some reason, I was blind. I did not know what to do so I let her and then thanked her, very much.

When the pain gets worse for some reason the eye opens wider. Sometimes the eye looks good and feels good but usually the more open the greater the pain.

"You're eye is really open today. I am so glad you're feeling better." "Your eye must be doing really well it looks so good and open."

Everything is interpretation. Do I take the time to explain? Do I make them feel bad by saying "I'm not blind." "I'm not crying." "No. You're wrong, I am really having pain. This is a very bad eye day for me."?

Do I bite my tongue and let them have their joy at feeling I am better?

Bottom line, do I become a lady of mystery, and lie? And if I lie, am I helping them, hurting myself, or both? (And, in the end, does it matter?)

Migraine ad - "These things are for real."

I had not seen this ad in a while. I had hoped the company decided to stop running it. But here it was again, over and over during the last couple of days.

The first time I commented on the ad was when I wrote a discussion topic for my women in pain awareness site. (www.womeninpainawareness.ning.com).
It was in December and the thought occurred to me that there was a connection between Santa and chronic pain. After all, Santa is (spoiler alert) not real yet we believe in him or at least act as if we do, if only for the sake of children.

Meanwhile chronic pain is real and yet we often act as if it is not.

I have written before about this disconnect between the reality of chronic pain and the lack of belief. In fact that is what prompted my creation of the women in pain awareness group. I was astounded when I first learned that women, even more than men, tended not to be believed when they complained of chronic pain. I honestly thought it was only me. I assumed I just had a really bad run of luck with my doctors and family.

When I first started with my pain it was 1979. Chronic pain had not yet become an industry. As clinics and specialties popped up, psychologists started to specialize in chronic pain, and pharmaceutical companies found there was money to be made in drugs targeted at those with chronic pain belief was still not catching up.

It has been 3 decades since my tic started. People are able now to at least talk about chronic pain. Celebrities discuss their own struggles, famous and not famous alike write books about it. Doctors are less inclined to pat a patient on the head and dismiss their complaint of constant pain. And yet...

The woman comes on the screen. I have migraines, she tells us and "These things are for real." It is 2011. Must we still defend the reality of the pain?

G-D gave me a Miracle (my doctors agree).You may call it something else and that's ok..

Some people will call it Mother Nature, The Universe, happenstance or coincidence. I call it G-d.

My neurosurgeon wrote in my chart that what happened is "amazing" He says "I have to see the definition of Miracle before I call it that." My opthalmologist and neurologist use the word Miracle.

Trigeminal neuralgia, the cause of my pain, is also called "the worst pain known to man." and "The suicide disease." For me it was the latter.

Trigeminal neuralgia, for me, was horrendous, life destroying pain, constant and sporadic in the left upper side of my face. It came out of the blue smacking me in my left temple: a lightning bolt burrowing - a thin line of burning, sharpness, a knife turning and slicing through my face. A slight breeze, a wisp of hair could set it off. Wind, cold, bright sun became my enemies; fearsome and loathsome, because they too caused tremendous pain.

It was only one half of one half of my face but it totally disabled me.

The first operation stopped the pain. For three months. Then the blood vessels that had caused it and been removed grew back. And the pain assaulted me again.

The next brain surgery and the next and the next, six all told, did not help. I was better in the summer because the weather was better. That let me go outside more but the pain was not stopped.

I suffered terrible side effects, from drugs and surgeries. The pain continued. I could not give up on finding a way to stop it. I had no choice. TN was my enemy. It had to be contained. I stumbled through more tests, drugs, even alternative treatments, such as hypnosis and acupuncture, all to no avail.

At the end of my rope and strength, suicide became the only possible way to end the pain.

I told the psychologist I had been seeing. She suggested I meet with a thanantologist, a specialist in death.

I met with him for an hour or so. He told me I should call him if I ever needed his help. I was not sure how he meant that.

The next step was an inpatient pain clinic. They were very nice there but told me at the outset they could not help me. They worked with pain that was from the neck down. Exercise, and PT could not help me. The group therapy, relaxation techniques, biofeedback could not hurt so it was worth trying.

Dr.(H) the owner of the clinic and a psychiatrist, asked me directly. "What will you do if we can't help your pain?"

"I will kill myself."

"Carol, I called the Court's chief psychiatrist to see if you could be involuntarily committed since you are threatening suicide."

"It's not a threat. I don't want to die." I said. "I just have to do whatever I have to to stop the pain."

"He agrees. He told me we could not have you committed since your threat is in response to a legitimate medical situation."

A month later I was packing to leave. My pain was unchanged. Members of the staff added to their goodbyes. "We'd prefer you don't kill yourself but we'll understand if you do."

I was ready to go home and act on it. At the last second the director called and told me another neurosurgeon had agreed to see me.

I went to the Massachusetts General Hospital expecting to have surgery. Dr. Sweet (the surgeon) and I had talked about the operation in a long phone call. He was going to cut the trigeminal nerve root. Once I was admitted to the hospital the surgery changed to a mini- frontal lobotomy: "You'll still have the pain. You just won't care that you do."

I said I would try anything to stop the pain but, not this.

The experience with him was very difficult and crazy making. I went home thinking if I killed myself I would not know if it was from the pain or from what had happened there. I decided I could not do anything, including suicide, until I felt more sane.

That was in 1981.

I limped along with the pain for five more years; slightly less disabled primarily because I was on more drugs.

Finally I went to see Dr. Barolat, a neurosurgeon practicing with the same group where my first surgeon, now retired, had been. He had stopped the pain. Magically, I thought this man could do the same, and at first he did.

I agreed to a brain implant, called a dorsal column stimulator. It did nothing for three months. Then suddenly it kicked in.

My pain was gone about 85%. I was still disabled because of the eye movement pain but I was able to stand in the rain, the cold, the wind. And not have pain. It was terrific.

The wonderfulness lasted only 7 months. The battery that powered the computer chip that was the implant died. I somehow also moved the wire that connected the battery to the chip.

Surgery to change the battery and re-place the wire was done at the same time. It required 2 incisions. That might have been why I ended up with an infection. I had to have the entire implant removed.

We tried another one about a year later but that did not work at all.
Dr. Barolat said nothing more could be done. A few months later he changed his mind. "I have an idea." Instead of putting the implant in the neck he would put it in my brain, directly stimulating it. It would be experimental but pain was pain. It made the decision for me. "Let's do it."

It took many weeks to find the right combination of stimulation before it seemed to be helpful. It never did what I needed though. I stayed on medications, including a lot of codeine. I never got to a point where I was not still disabled by the pain.

I waited a long time for relief.

Finally I was back to where suicide was the right and only answer.

I stood in my living room, a bottle of pills in my hand.

"Okay." I said as I looked at them. "There's no other choice."

I felt sad. And scared.

And then I felt this compelling feeling.

It was not a voice or words, just a sensation of being pulled. You need to lie down..

I could have fought it or refused but did not. I went and lay down on the couch.

When I tried hypnosis to deal with the pain it had not helped at all. It only taught me how to put myself into trance.

The feeling continued. Put yourself in trance. I thought, I don't know why I'm doing this. There's nothing to say. I know what I am going to do. And then the words came into my head.

I did not hear a voice; the words were just somehow there. "Your brain needs to know and remember that the left fifth nerve, your trigeminal nerve, has been cut, burned and killed. It is totally and completely dead. Your brain needs to know and remember that."

The words were true. They continued, over and over, for about 10, maybe 20 minutes. I had never heard of pain hypnosis being done in this way. It was always with "glove anaesthesia": The therapist gave instructions to make your hand numb. You then transferred the numb from your hand to the pained area. The only other way I knew was to talk directly to the pain. I had never heard of addressing the brain directly.

The words talked to my brain. Finlly they ended and I came out of trance.

And the pain was gone!

I could touch my face. A face that had needed to be washed under general anaesthesia. A face that had such pain I let them cut into my brain over and over again. And give me narcotics, even opium and morphine.

That was in 1998. I don't know why G-d gave me the Miracle. For some reason it did not effect the eye pain. Why He would stop part and not all, only G-d knows. Maybe it was because it was the face pain and not the eye pain that was creating my self imposed death sentence, .

I know people, including me, think when there is a Miracle everything changes, life is suddenly terrific.

It is not.

You know my story. I want to work but the eye won't let me. I did not get a family, the one I have, the ones who live up the street did not suddenly start caring. I still have to use the word 'disabled', because I am. The full life I want and still expect, even after all these years, did not materialize.

I am often unhappy with my lot. But.

But I can touch my face. I can go outside. I thank G-d every day for this. He probably gets tired of hearing me say it for I also do it when the wind hits my face or the rain starts or its cold or breezy, or, or, or...

The folks who believe us, and in us.

"How much does anyone really know about the person sharing his bedroom?" asked the district attorney in an episode of Law and Order. The remark was related to a defendant who turned out to be very psychiatrically ill, her paranoia causing her to kill her college roommate.

What does that have to do with women in chronic pain?

It reminded me of the folks who refuse to believe us.

I am being somewhat redundant, coming back to a theme already used - but it is one I have no doubt I will be revisiting a lot.

It is an irony that our pain may teach us more about those we know than anything else we have ever shared with them.

A caring and adoring husband, a sweet cousin, sisters and brothers acting like good siblings, friendships tried and true. Normal loving relationships.

And then we become chronically pained.

The thoughtful husband grows quickly tired of his wife's pain complaints, of the "I can't's", the "I am in pain", the plaintive cries "Will it ever end?" The same for the other people in our lives.

It is hard for me to find positives in having the pain, in being alone through the majority of my fight. But positive there is. The chaff is separated from the wheat, the caring from the 'I am here as long as it isn't hard.'

The pain can be the most defining moment for knowing who that person is: the one we can trust, the one with whom we can share our confidences, our fears, our hopes, our secrets, the one on whom we know we can depend.

It is the ones who remain who deserve not only to share our space but to have the pleasure of having us in their lives. And them in ours.

Make tenacity your partner.

My friend Jennie (pseudonym) went to her general practitioner (G.P.) complaining of cough, fever, and generally feeling bad. Chest x rays showed a spot that was pneumonia.

After 6 weeks of medication and rest the doctor ordered more films. The spot was still there. Dr. Jones (pseudonym) thought it was an area of infection or just a remnant of the pneumonia. He told her "I'm sure it is not cancer. Nothing to worry about."

Jennie was not satisfied. She insisted on additional tests. She was right to do so: it turned out the spot was cancer.

Jennie returned to her G.P. a few weeks after her successful cancer surgery. Her doctor was apologetic. "I do not see patients the same way anymore. I was so sure you did not have cancer. I will be paying much more attention from now on."

I think too many chronic pain patients have had similar experiences.

A doctor decides we are making too much of our pain: it is not as bad as we say. Pain is completely subjective, its symptoms mostly invisible. The ones he can see may not have diagnostic meaning when looked at individually. The time is not spent or available to consider the problem, and patient, as a whole, so he does not take the time to put them all together in a way that might lead to a diagnosis or treatment.

Our complaints may not be an indication of a killer lurking, like Jennie's was, but chronic pain can be a murderer all on its own, either just the pain itself, killing spirit and life day by day, or a more insidious executioner that can be held at bay, such as lupus, rheumatoid arthritis and others that, the earlier they are caught, the better the treatments and treatment outcomes.

Jennie's tenacity helped to heal her. She refused to be placated by her doctor's reassurances. She insisted on further tests and follow up. That may have well saved her life.

We need to be Jennies. We need to speak up: loud and strong, fighting if necessary, to be heard and to get what we need from our doctors. And if they refuse to hear us or belittle us, or treat us like children, we need to have the courage of our convictions and find a doc who will listen, and act as healer.