PREDATOR OR PREY?

I was at church and someone started taking pictures with a flash camera.

My eye cannot tolerate bright light, especially when I am unprepared for it. My entire body recoiled, pain searing my eye as the flash lit up the sanctuary.

Fearfully I kept my head down, staring into my lap. Minutes passed and no more photos were taken. I felt safe enough to chance looking up.

691px-Fawn_in_Forest_editI found myself constantly checking the pews, feeling like a trapped animal. Where is he? Where will the danger come from, left, right, the middle? Will it happen again? When? Will it be soon?

How often do we feel like this? How often is it that the predator is not someone or something, but the pain itself?

It’s a good day. I am reading, fooling around on the computer, or at a store shopping. Doing things that are my triggers. My eye is doing well, feeling pretty good. The pain is not being set off, at least not enough to make me sit up and take notice, take a pill, or stop.

I continue what I am doing, not paying attention. Suddenly the pain comes. It forces me to stop, screaming at me, “Ha! Got ya!”

I am the prey, sipping gently at the stream, not paying attention, just being. The pain is the predator, hiding in the bushes, waiting until I am most vulnerable, relaxed, unprepared.

I think the pain angers me the most when it is set off by things I cannot predict.

It is bad enough when I do the behaviors and actions that I know will cause the pain to start, to build up, and get to the point where it is uncontrollable. I can at least blame myself for the pain being set off or made worse.

It is the complete lack of control over things like the flash of the camera that is harder to deal with, because then it is not only the pain over which I have no rein. It is over that which set it off.

Golf Pass

For many of us, we know exactly what makes the pain worse and what makes it better. We strive to be the overlords of those things. But life is uncertain, and so too are the unexpected triggers.

An animal of prey does not take itself to task for getting in the way of the predator hidden in the bushes. He runs as fast as he can to get away. He’s glad when he makes it. Sometimes he is not fast enough and gets hurt. The lucky ones do not get killed.

They say what doesn’t kill us makes us stronger. The pain, as horrendous as it is, does not kill us.

Even when triggered by that which was hiding, even when we get caught and the pain is very bad as a result, it does not kill us.

We cannot control everything that makes our pain worse. But we can accept that sometimes there is a predator called pain. And even when we’re caught in its grasp we do not have to stay there.

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Reprinted from: http://americannewsreport.com/nationalpainreport/pained-life-predat...

A SONG OF TRIGEMINAL NEURALGIA, Homage to the fighters, damnation of the...

MY TRIGEMINAL NEURALGIA STORY.

I posted a video of a short version of my story.
http://ireport.cnn.com/docs/DOC-1032817

THE CONUNDRUM OF PAIN.

September is National Pain Awareness Month. In Pennsylvania it is also Women In Chronic Pain Month.

The latter is an easier concept. Bringing attention to the disparity and gender bias in treating chronic pain in women vs. men.

To my mind, the former is much more complicated.

First if all, I wish they had included the word “chronic” in the resolution and not merely the word “pain”. Everyone is in pain at some time or another. The issue is much greater than that. It goes directly to the kind and amount of research and research funding, as well as the treatment of those living with chronic pain.

There are many disorders and diseases with pain as the main or sole complaint. These are some of them: cranial nerve neuropathies (such as trigeminal or glossopharyngeal neuralgia), peripheral neuropathies, including phantom pain, CRPS (chronic regional pain syndrome), many of the auto immune disorders such as rheumatoid arthritis, and Lupus, and the list goes on and on.

Many of them have treatments, medications, and possibly surgeries, that are specific to the diagnosis. The one common denominator, absent the pain, is the use of prescribed opiates. Codeine, Vicodin, and others are prescribed mainly as an analgesic, since all they can hopefully do is anaesthetize the pain.

Many of us who live with daily and often constant pain tend to look at it as one main category: chronic pain. But putting it all in one basket or one name makes it harder to accept the difficulty in finding an appropriate treatment. There is not and probably cannot be just one answer, because there are too many disorders as the primary cause.

I have to admit I get frustrated when I see attention and publicity paid to a specific disease such as fibromyalgia or CRPS. I immediately think but that is only one illness, what about the rest of us?

My trigeminal neuralgia pain is not the same as the pain of someone who has CRPS or fibromyalgia. Of course it is different. Yet there is a debate ongoing as to whether chronic pain is a disease in and of itself.

How can it be a singular disorder? Pain, after all, is a symptom, a sign. It is not an entire entity.

But boy, I sure wish it was. Research and funds could be coordinated with one single goal; relieving the chronic pain of an estimated 100 million Americans.

It would be so easy, so wonderful to have the one- size- fits- all answer. It allows for hope. If all the money, all the studies and research were directed towards the one endpoint — the chances of a cure would be greater. Instead it is scattershot towards the individual illnesses.

It is National Pain Awareness Month. We need to bring attention to the month, to the numbers of people living with pain, to its disability and horrors. It is a time to announce the ills that cause the pain. It is also a time to remind ourselves that the answer may be a longer time in coming then we wish. The upside is that the research is ongoing for the singular illnesses.

And in that, there is hope.
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Reposted from my column: http://americannewsreport.com/nationalpainreport/pained-life-conundrum-pain-8821580.html

A SONG OF TRIGEMINAL NEURALGIA, Homage to the fighters Damnation of the pain.

We who live with trigeminal neuralgia
Soldiers in a war.
Fighting an invisible enemy.
What is the fighting for?

Trigeminal neuralgia,
“the suicide disease”
The worst pain known to man,
Help us, find a cure fast please.

A knife, a lightning bolt
A slash across the face
It comes out of the blue and
Boom - facial pain is now your fate.

Nothing shows where the horror hit,
It lasts for such a short time,
It’s hard to believe such a pain exists
Yet somehow it becomes mine.

Any touch to the pained zone
An invitation to the nerve
A breeze, a wisp of hair
Its hard to stop the moans.

Then to finish it off,
for some the pain is constant,
No one can imagine the horror
Of the beast that walks in our conscious.

For me it’s been 12 brain surgeries,
And not one sibling came
They decided I was a fraud
Maybe because they couldn't see the pain.

Dr. Jewell Osterhom,
the first one to enter my brain
cut out a bunch of vessels
he found that were to blame.

The next surgeon, Peter Jannetta,
He paralyzed my face
When he did his self named surgery,
putting a Teflon pad in place.

The scar tissue left by him
Made all other options dim
Other surgeons tried to fix it
But the benefits were none or slim.

Even when I felt better
The better was quickly gone
The benefit more from staying in -
or good weather all but gone.

The pain always came back.
Vengeance was its goal
Everything I had or wanted
The pain and Dr. Jannetta stole.

Finally Dr. Barolat offered
Something I found unpalatable
But finally being choiceless
the choice was to be malleable.

I let him put inside me
some implants and a battery
None of them were lovely,
but the benefits from them godly.

Trigeminal neuralgia,
the suicide disease.
It makes us make choices
None of them serene.

For those of us who have found solace
In drugs, operations or ‘things’
There can be no finer feeling
Then when the monster is freed.

This ode I write to tell you
The good, the bad, the need
In hopes that it can help
those who suffer from this beast.

Even when things go wrong
The hope can still be there.
For you never know whats waiting
Right beyond the air.

Trigeminal neuralgia
A name that rhymes with nothing
An ogre that besets us
Our fight not one of bluffing.

I salute all of the sufferers
I know the abomination
The fight to be rid of this pain
A courage, a struggle brazen.

Here’s to you, all of my fellow fighters. against trigeminal neuralgia and all chronic pain.

THE PILL DILEMMA.

Only twice in my 30-plus years of living with chronic pain have I had a problem getting my narcotic medication.

The first time a relative lied to a doctor.

I was visiting from out-of-state. The pain was bad. I went to take a codeine pill and realized I had not brought enough with me.

Checking The Label“What if the pain gets out of control?” I cried. “What am I going to do?”

The relative called the doctor who was covering for my regular one.

“She’s ranting and raving about not having her drugs,” she told him.

He believed her. And he refused to write a new prescription. He also wrote in my chart: “Her behavior indicates she may be abusing her drugs.”

My regular doctor told me about the note. He added a larger one: “She has been taking this drug for years. She has never had a problem with it.”

The second episode again involved a doctor other than the one I usually saw.

I came in every 6 months to get my prescriptions, for another medication and for codeine.

“How often do you take the codeine?” he asked.

Not thinking I needed to be cautious I said, “About 3 pills a day.”

“I see your doctor gives you 120. I’m only giving you 90.”

“But three is an average. Some days I need more.”

“No. You said three.”

He didn’t care that it wasn’t enough. He didn’t notice 90 a month did not account for months with 31 days.

Again, my regular doctor took care of it.

Golf Pass

“I know you need 120 a month. Just make sure you only see me from now on,” he said.

It was astounding to me that after decades of taking this drug without any problem, I was questioned, disbelieved, and treated as a drug seeker rather than a patient with chronic pain.

I understand narcotics have a way of finding their way onto the streets and into the pockets of bad guys. I get that there are unscrupulous doctors and so-called “clinics” in it only for the money. But don’t presume me guilty. I should not feel humiliated because I asked for what I needed.

A friend asked me, “What happens to those in chronic pain if they can’t get the meds they need?”

I had no answer.

I have not heard of cancer patients being deprived of their pain pills. Diabetics are not told, “You have taken too much insulin this month so no more for you.”

Maybe the issue goes back, not only to the invisibility of pain, but to the subjectivity and concept of pain. Maybe the bias is innate in our health care system.

According to a recent study in The Journal of Pain, the annual cost of chronic pain is as high as $635 billion a year, which is more than the annual cost of cancer, heart disease and HIV/AIDS combined.

But where does the money go? Just one percent of research funding from the National Institutes of Health (NIH) is dedicated to pain research. Last year, the NIH spent $396 million on pain research, but $5.6 billion on cancer research.

It is time for the government to realize it can’t have it both ways; with the DEA working to decrease the ability of doctors to give opioid medications to chronic pain patients, while funding for pain research and finding alternatives to opioids remains miniscule compared to other disorders.
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My latest column reposted from: http://americannewsreport.com/nationalpainreport/a-pained-life-the-pill-dilemma-8821321.html

LOSSES. They're not only physical.

I was watching the TV show Monk. I was captivated by the friendship and loyalty shown to Monk by the people with whom he used to work.

I used to work in a hospital. There was a sense of kinship and caring that we felt towards one another.

So many times I see posts in support groups talking about the losses someone has sustained because of the pain.

I have lost the ability to use my eyes for any length of time. I miss being able to read a book in one sitting. I miss remembering from one short scanning of a chapter (if I can get that far), until the next time I can pick up the book, who each character is and how they figure into the story.

I am very lucky. Unlike so many with chronic pain, I have not lost physical ability and agility. Getting out of bed, tying my shoes, and making it through the day.

We don’t often talk about the other losses.

I have written about my family abandoning me a long time ago, starting before the pain. I miss having family, but it is not an active loss — as it is for many who still have parents, siblings, cousins, etc., who doubt the validity of their pain.,

I have not been able to work since 1977, when the pain came back after a 3 month hiatus. While I was pain free, I began working in an office and quickly made two wonderful friends. But when the pain returned the three months of friendship were not enough to overcome the “I can’ts” of the pain.

The emotional and social losses that we incur are incalculable. I want, I need the person I can call and say, “Let’s go for coffee.” I had that person but she moved.

Now there is no one, no one who calls and asks, “How are you today?” “Is there anything you need?” Or “Wanna go for coffee?” My inability to get out and about, and work, keeps that from happening.

I found that without work, when I did make friends it was often with one other person whose neediness equaled mine. Maybe it was not from chronic pain, but from disability, social discomfort, or emotional problems.

Golf Pass

I recall one friend saying to her father, “Carol and I would never be friends under any other circumstances.” She was absolutely correct. The only thing we had in common was our pain; hers social and psychological, mine physical.

There are people, professionals, who talk about pain being a psychological issue, unresolved childhood conflicts and the like. But trigeminal neuralgia, CRPS, Lupus, etc. don’t happen as the result of psychological problems or emotional turmoil.

Even those who grew up in a Mary Poppins home get these diseases and disorders. They happen, simply, because of physiological processes gone awry.

The turmoil and problems come because of the effect the pain has on our lives.

Certainly our psychological makeup will affect the way we respond to the pain. But it is the losses because of the pain that need to be addressed. They are not just psychological or emotional. They are very real.
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Reposted from: http://americannewsreport.com/nationalpainreport/a-pained-life-losses-8821183.html