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"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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Saturday, August 31, 2013

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.

Tuesday, August 20, 2013


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.
My latest column reposted from:

Wednesday, August 7, 2013

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.

Reposted from: