THE PAIN WON'T STOP YELLING AT ME.

Today is a bad day. I find the stimulation that failed was doing more and more then I ever realized. I awake with the eye swollen, already in discomfort. While the stimulator was working I needed to use my eye before the pain spoke up.

I was supposed to go out and do some politicking. I was looking forward to it, a chance to be outside and meet new people, be a part of, something way too rare in my life. When I awakened my eye said No. This is not a day to use your eyes. Already I am hurting, it can only go downhill from here.

I find I make my decisions now on how much codeine will I have to take if I do thus and so. Is it worth it?

Angry at myself, at the pain, and what my life has become because of it, and how much harder it is now that the implant failed, I need an answer. I have to do...something.

The implant has been off for weeks, months now I think. Sometimes I still get a tiny flicker of stimulation. Tha Medtronic representative tells me there may be a short circuit, other people have also called to say even when off they can feel the stimulation.

I feel it less and less, almost completely gone by now. I remember why I first turned it off, why I call it 'failed'. The stimulation went awry, horribly strong and not where it was supposed to be. It had scared me and hurt me. I had to turn it off. One day the sensation almost brought me to my knees. I was truly afraid of it.

I wanted to go this morning. I did not want to take more codeine. I did not want the extra pain of being with others and having to use my eye, a lot. I also did not want to be alone. I see myself getting back to the going out less days, not wanting the pain, not wanting the drug or drugged sensation.

I went to my bureau drawer and took out the computer for the implant. The one that turns it on and lets me choose how it will work. I searched for the magnet that you are supposed to always carry with you, a just in case, the magnet immediately turning it off when it comes close or in contact with the battery in my chest. The magnet was not where I remembered putting it. It was not a frenzied search but a desperate one. Out of the corner of my eye I found it. Eureka!! I hurried back to the bed where the computer lay. I put the magnet down, a few feet away but close enough if I needed it quickly. My hand reached for the computer and the 'on' button.

Wait!, my mind yelled out. Remember how it felt when it was on? Yes. I do, but I will put it on at the lowest level of stimulation. That should work. And what level was it on when it did those awful things? Oh right, it was on the lowest level possible. My face scrunched up, Oh (*&%#. Do you still want to turn it on? I did but the fear outweighed the need. I picked up the computer and put it back in the drawer.

I have said many times, to many people, and here too, "Do not let the pain make your decisions for you as hard as that may be." I almost fell into that trap today.

Sometimes the pain is so loud it is the only sound that gets through.

It is very hard to do but when it happens we need to find the pillow within, whatever that may be: a voice, a memory, a feeling, a something specific to you, strong enough and loud enough to drown it out.

PAIN SCALES & US. NOT PERFECT TOGETHER.

We have all been asked to rate our pain. Most of us are familiar wiyth the following rating scales.

They make sense if you are a 'regular' person experiencing acute pain. For some with chronic pain it may be appropriate, but I think for many of us it is close to useless.

I say this not because our pain is so different then that of a sprained ankle or a broken arm. Our pain tends to be different because although it is chronic and sometimes constant it is also variable.

When I go to the pain management doctor's office I am immediately given a form to fill out. There is a diagram of a body, front and back, left side, right side. I put a circle around the left eye where the pain now resides. How bad is the pain, rate it from 1 - 10 is the other question on the page.

I cannot answer that question, not with a 1, or 5 or even 10. Right now, at this moment, I have not used my eyes to read or for any extended usage, having driven for a while to get there and then doing nothing, right now it is a 0 or a 1. If I read a short article before they call my name, it may be a 3, if I was at home and did not heed the pain's call; continuing to use my eye to read or bake, or talk with a few people at once, causing me to move the eye a lot, it would be an 8, sometimes a 9 (I call nothing but the trigeminal neuralgia lightning strikes a 10.)

Hopefully our docs understand that saying it is only a 3 right now, uncomfortable, twinging, hurts a little more then someone else's (one of the most odd scales to my mind) that this is how it feels for this snapshot in time - but the overall picture and words cover a much larger range.

I am not sure how you would draw a scale for us: maybe there needs to be two - one for acute pain and one for those in chronic intractable pain. And even then maybe there needs to be two, for the pain right at this moment and for the pain overall.

A QUICK NOTICE

I do not know why in the last post 2 phrases were highlighted for clicking. I tried it and it took me to an ad.
I do not use this blog to make money or take you to ads so please, if this happens, in other posts too, do not bother clicking on it. I am awaiting an answer as to how to stop it from doing this.
Thanks, Carol

ACCEPTANCE, SCHMEPTANCE

Someone from my sister's high school class contacted me a few weeks ago. Although there was a 10 year difference in our ages my sister often took me along when they visited. I liked her. She liked me.

"How are you"? she asked "And how are your sister and brother?" Unhappily I had to write bac, "I have been disabled for over 30 years. My sister and brother and I have been estranged for many years."

She did respond.

I wondered if she contacted my siblings. And more so I wondered would they tell her the lies they had been telling about me for many years: lies that had effectively turned a lot of people against me who used to like me.

It started me thinking about other people, other times, other realities. Some of the lies did not have to do with my pain and disability but it was those that I thought about.

I thought about my father. He had decided many years before that I was lazy, a malingerer, a fraud, despite doctors showing him diagrams of what was wrong inside my brain.

He was dying of ALS. With not a lot of time left I thought maybe now I could get him to talk with me about who I was and what had happened.

I sat down with him, my lap filled with medical records and articles about what I had.

"I need to get this settled with you. It is important to me that you accept the truth of what my life has become, and why." I picked up page after page: "This is the diagram of what they found in the first operation. This is what they found on the second. Here is the operative report from operation 5 and 6. Here is the chart notes from 3 and 4 since they did not do an open surgery."

He looked at them as you would look at a boring article in the paper.

I reminded him of what Dr. Schatz, the neuroophthalmologist, had said to him, "What Carol has is from a birth defect." and the texts and diagrams he had shown him.

"This is real." I said. "I never made any of this up. My disability and pain are real." Defending the pain and disability was always hard for me: how can you defend something that has killed your soul, and ruined your life and dreams? Sometimes there is no choice.

I finished my presentation, for that is what it was. He looked at me, then down at the sheaf of papers.

"There's nothing wrong with you." He looked away, the conversation over, the truth of my life ignored and denied.

I thought of that, and of my sister arguing with me about keeping candles unlit at a lunch table because the flame hurt my eyes, of a nephew saying "Do you wear penny loafers to show people how poor you are?" Of the women, when my trigeminal pain was at its worse, the slightest breeze triggering horrendous pain, yelling at me "How dare you take a handicapped spot? There's nothing wrong with you." Of other voices, other places, other nastiness, denials and refusals of acceptance.

There comes a point when you have to let it go.

I heard a great line the other day on an NPR show. "Expectation is the father of disappointment and resentment."

It's true. I expected that, one day, the miracle would happen; I would be believed without having to show the medical and textbook proof. I would be believed because I said "I am in pain. I cannot..."

Those expectations, that hope, has had only one outsome - disappointment, resentment, hurt, anger, you name the negative and that emotion can most likely be included.

The time has come. Forget accepting the limitations of others in being able to empathize, to hear, to understand. The onus is on me. I have to let it go. And when I do the pressure of the unmet expectation will dissolve, and the overwhelming weight disappear.

THEY SAID IT COULDN'T BE DONE, and yet...

Somebody said that it couldn’t be done,
But, he with a chuckle replied
That "maybe it couldn’t," but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

Somebody scoffed: "Oh, you’ll never do that;
At least no one has done it";
But he took off his coat and he took off his hat,
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle it in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That "couldn’t be done," and you’ll do it.

(Edgar Albert Guest http://allpoetry.com/poem/8471341-It_Couldn_t_Be_Done-by-Edgar_Albert_Guest)

Dr. Martinez injured the sensory portion of my facial nerve in 1979, when he was going after the trigeminal only. The sign was loss of taste and sensation in the left side of my mouth and tongue. Three months later Dr. Jannetta, in going after the trigeminal nerve, paralyzed the left side of my face 100%. No one, not Dr. Jannetta, the facial nerve specialist, or the ophthalmologist who was dealing with the ophthalmic side effects, suggested physical therapy.

At that time, because of the extent of the pain, I do not know if I could have exercised my face; but I was never given the opportunity to decide if I could or to try.

I have had face lifts on the right side to make my face look more age symmetrical, the left side not aging while the right side is wrinkling nicely. There has also been a browlift and even a cutting of part of the left side of my smile so it looks more like a smile (that helped little). I had the area of atrophy by my left eye filled with fat. That lasted for about 2 years and then the atrophy reappeared. Although this was all reconstructive, to fix what Dr. Jannetta had done, insurance called it cosmetic. The money ran out so there was nothing more I could do. Everyone said so.

Forward 20 years later (since the paralysis).

I was looking in the mirror. I had never adjusted to the way I looked, the way the paralysis looked. Strangers still stared, children often looking at me, winking back, mimicing what they thought I was doing: the eye closing, seemingly trying to meet my mouth as it forced itself upward. People asked me "Did you have a stroke?" I was sick and tired of it. My face looked back at me. A thought hit, taking me by surprise. What if I tried to exercise it? Maybe I could fix the smile.

Everyday I forced the left side of my mouth to move upward. I used my hand to move it passively. Actively I struggled, my whole body tightening, forcing some mouth movement. It was not very effective - at first, or at second, or at third, but, little by very little I noticed movement. I was beginning to have a smile on that side. I had not seen my pain doc. for six months. The first thing he said as he walked into the exam room was "Your mouth is moving more." He could not have said anything better.

The forehead on the left side does not move at all. I am working as hard on that. Very slightly the eye brow is starting to move, almost imperceptible but definitely moving. Part of the proof is that the area of the very visible atrophy next to my eye, is starting to fill out.

They said nothing or that it could not be done. But I am doing it.

Sometimes we have to go past what the doctors tell us, when they cannot or do not think out of the box, we have to find the creativity within ourselves. And it may be that it can be done, and we are doing it.

GOSSIP IS THE THING WITH FEATHERS.

The true quote is "Hope is the thing with feathers." but I think gossip also has wings.

I was reminded the other day of an experience I had when I was a physician assistant student in 1974.

I started the program at the same time I was having a very bad pain issue with my left shoulder.

I had the typical symptoms of thoracic ooutlet syndrome. The pain was in the correct area. More telling was the missing pulse in my left wrist when I turned my head to the left. No one questioned that I had this problem. Except for a neurologist.

A vascular surgeon admitted me to the hospital. Although convinced of my diagnosis Dr W., a neurologist, was consulted. He came to my room, sat on my bed, and asked me to turn my head. He nodded to himself when the pulse disappeared. Then out of the blue, he asked "Do you have a psychiatric history?" An odd question given my textbook signs and symptoms.

I told him about two suicide attempts when I was a teenager, the second and last, cutting my wrists. He questioned a previous vascular problem, when I was 19: a blockage of my knee artery. It resolved spontaneously, no cause determined, a common situation. His next action was to decide I needed a sodium amytol interview - to determine if the two, the knee and this arm pain problem were psychosomatic. The loss of a pulse, in a knee and a wrist? Even if I had wanted, which I did not, to fool someone, I doubt I, or even my unconscious, would be able to pull off that slight of hand.

He gave me the amytol, asked me about the last of the 2 attempts. I felt myself fighting telling but I felt unable to not speak. Unlike TV I did remember what I had said. The same thing I had told him without the amytol.

Both wrists had been cut but he honed in on the left one. He decided I should not have surgery, the pain (and loss of pulse) a manifestation of (something) relating to the the fact that the left wrist had been cut.

The surgeon, thankfully, ignored his advice. He operated, and found two of the major vessels in my shoulder/chest area were juxtaposed. He fixed it. I awakened with no arm/shoulder pain. And a pulse I could no longer control.

When a few of the other students in my class came to visit, incuding two with whom I had, I thought, developed a strong friendship, I told them about the experience with Dr. W. I told because I saw it as doctor idiocy. It never occurred to me that people would take it as a negative about me. (I did not go into the specifics, just the amytol test.) To my amazement, and consternation, they stopped visiting me. All of them.

My parents came to the hospital but my siblings were 100% absent. I looked forward to having the classmembers visit. But the story took on wings of its own. When I returned to class I was somewhat shunned, the story evidently taking on a life of its own: she has psychiatric problems, stay away. Not one person said, "Hey, that's great they found what was wrong and fixed it. I am so glad you are no longer in pain."

That was many years ago but I see the repetition in later years of my life.

It seems that those of us in chronic intractable pain experience this more then others, because it is pain; because it is invisible, even when there are obvious signs, like a missing pulse.

What can we do about it, if anything? Is it a change in ourselves that we need? Is it even worth trying to change the beliefs, lies, and expectations of others?

IS THIS WHO I ALWAYS WAS?

I had an 'epiphany' the other day, as my friend Dottie called it. One of those 'Ah ha moments' where you shake your head and think Wait a minute, how could I not have realized this?

If you read an earlier post, long time back, you know I no longer have the typical trigeminal neuralgia pain: the spontaneous and triggered pains that hit like lightning inside your skin. Also gone was the atypical constant pain.

I consider the way it happened to be a Miracle, although everyone has their own interpretations. The reason I explain is because I was praying, thanking G-d that I could touch my face and not worry, not be afraid. Before the intervention I could not tolerate any touch to my face. Since then, 14 years this November, I can wash my face and hair, go outside in any weather, tolerate any touch to my left face and scalp without giving it a second thought.

I started my prayer "Thank you that I can touch my face and the words reverberated back. How amazing is this? I could never touch my face. And now I can.

Wait a minute. Wait a minute! That is not true. Not "never".

I was not always this person. I talk about when I was able to work, when there was no pain, when I did dinner theater, the most fun and best part of my life, but those are memories, pictures and feelings of a time so very long ago. They are real, and yet somewhat disconnected. I feel the truthfulness, the comfort and warmth of the good memories, for that moment when I relate them or think about them. Talking about them with others is enjoyable, they make me a part of the world again. Thinking about them tends to more often impart a sadness.

It is another instance of needing to change my thinking, as well as my perception of what my life is, and what it was.

There was a time when I was a lot more then pain, when I was a part of the world, when my ups and downs were the regular ups and downs of life.

Someone had posted a note elsewhere about there being two groups, those with CIP and "normals". That offended me. I am not my pain, I am a regular person, my life interrupted by the pain.

It is ironic. As I write this I realize I am of two minds, the one that expects the pain to be fixed and my life to continue from the point where it was interrupted by the pain. I will be 26 again, taking up where I left off, back to the aspiring singer/actress, making friends, finding my niche.

The other mind is the one where I started this post. There was no time before now, before the pain.

It is a matter of integrating: the knowledge that I will never get back the time between 26 and now and the acceptance that my present is not the always was.

I am not sure this is an "Eureka" that I want, but it may be one I needed.