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Wednesday, September 25, 2013


1st International Trigeminal Neuralgia Awareness Day on October 7th 2013.

Monuments and Bridges throughout the globe will turn teal for the day (teal is the color assigned to tn)
The Oamaru Opera House in New Zealand, a falls in Canada, the Boston Zakim Bridge, Terminal Towers of Ohio and The Mid Hudson Bridge New York among others..

Sufferers of Trigeminal Neuralgia (TN) are living with what is called "the worst pain known to man" and "The suicide disease".
The trigeminal nerve is a cranial nerve that gives sensation to the face.

When someone develops trigeminal neuralgia the sensation becomes pain. This pain can effect certain parts of the face. For most people it is only one half of the face that is effected but for others it can be both sides.

The majority of patients have pain that is in the jaw and mouth area. Often they are misdiagnosed and have extensive dental work, including multiple tooth extraction which is of no help in this disorder. Other patients may have the pain in the middle of their face, forehead and eye area, in both, or in all three.

For many victims the pain comes out of the blue, the pain often described as a stabbing sensation, electric shock, a lightning bolt through your skin. The pain usually lasts for only a few seconds to several minutes. There is no visual evidence of trigeminal neuralgia, such as swelling or redness. Diagnosis is reliant on the description and area of the pain.

Age used to be a determinate because it is more common in women over 50 but it can be found in all ages, including children, and in men as well as women.

Treatment usually begins with anti-convulsants which may stop or reduce the pain. If these do not work there are a number of neurosurgical options but these often carry a high degree of risk/side effects.

The majority of people with this disorder live with some level of the pain for all of their lives. For others it is not only debilitating but disabling.

Because it is considered a 'rare disease" there is a serious lack of funding. As a result there is still no agreed upon cause. The lack of financial resources also means there is a dearth of research into finding a cure.

The lack of funding also means there is no accurate data on the number of sufferers globally. It is estimated that 1 person in 15 -20,000 has trigeminal neuralgia and 4 to 8 million sufferers worldwide.

TRIGEMINAL NEURALGIA AWARENESS DAY, October 7th 2013, is a day to not just raise awareness, but to raise money for research as well through the selling of teal ribbons. These are availale for sale at The profits are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.

Tuesday, September 17, 2013


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.


Reprinted from:

Friday, September 6, 2013


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.
Reposted from my column:

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:

Thursday, July 18, 2013


A Pained Life: Changing Attitudes about Medical Marijuana

July 17th, 2013 by Carol Levy, Columnist

When I was in my early 20’s, years before the onset of my pain, I was offered a marijuana cigarette. I didn’t want it, but the pressure from my friend was so great I finally took it. I puffed on it once. I did not inhale.

I was not sure what effect it might have on me or how it might make me feel. I was afraid of it.

bigstock-The-words-medical-marijuana-su-17121803A few years ago, feeling desperate for anything that might help with the pain, I googled “medical marijuana.”

I found a site in Canada. The only requirement was that you send them a note with the name of your medical disorder. The seeds arrived in the mail and I planted them in the laundry room sink.

They were fast growers; within a week or so I had some beautiful plants.

I wasn’t sure how to use them. I also wasn’t sure I had the nerve. It turned out my worry was for naught.

On my way to check on the plants I walked into my living room. My cat Rooty was running around the room, really, really enjoying herself. That was out of character. As soon as I walked into the laundry room I saw why. All of the plants had been eaten down to the root.

It let me off the hook. I no longer needed to make an active decision about trying “pot” for my pain.

I have been sitting on the sidelines on this issue. Although it has disturbed me that, despite proof of the benefits for those with cancer pain, loss of appetite, HIV and other disorders, medical marijuana has remained illegal in most states. Even when I am asked to sign petitions about making it legal I have not done so, not being sure exactly where I stand on the issue.

But then my self-interest came into play.

I have “phantom pain” of my face (anaesthesia dolorosa). This is a neuropathic disorder. It often defies treatment.

A recent study published in The Journal of Pain about vaporized cannabis significant improving neuropathic pain changed my mind. Although I have not become an active advocate, at least not yet, I follow the debate over medical marijuana much more closely. I am more willing to add my name to the petitions for making it legal.

As chronic pain patients, we are under fire from the DEA. Their rules have made it more and more difficult to get the narcotic medications many of us, including me, need. It has also made it harder for some patients to find doctors willing to prescribe them. That makes it even more important that alternative therapies be found.

Marijuana is one of those therapies.

The study is a small one, only 39 subjects, but the researchers found a significant benefit for those patients who have treatment resistant neuropathy. That would be me.

I know there are many reasons and many people who do not want to see medical marijuana legalized.

However, for me and many others, it could mean the difference between staying disabled and being more able. Dare I hope, maybe even becoming “able.”

Reposted from my column:

Wednesday, July 10, 2013


I was sitting at a table with some people I knew, slightly.

I did not know how much of my situation they knew, but the issue came up about my not being able to work. I told them about the pain that comes from any consistent use of my eyes for more than 10 to 20 minutes before the pain becomes too severe for me to continue.

They immediately came up with suggestions, most of them centered on using a timer.

“Set it for 15 minutes so you will have to stop,” they suggested.

That’s a good idea. In fact, I came up it with a long time ago. The only problem is, it’s a lot easier in concept then reality.

I am reading a mystery, my favorite kind of story. The book is getting exciting, the clues mounting, the name of the person “who dunnit” to be disclosed in… wait, bringgg!

Off goes the timer. I can’t stop now. I have to find out who did it.

I know better, but I think, as I often do, five more minutes won’t make a difference.

But of course, it does.

Sometimes it is more important eye work, writing this column for instance. I cannot break off in the middle. I lose my train of thought and have to start over, which means going past the time limit the next time I work on it.

Sometimes I get to the point where I need to stop, but in order to not lose my concept, I continue making notes; which takes me past my time limit. The pain is then at the point of no return, at least for the next hour or more.

If I go to a store, I need more than 15 minutes to find what I need. I use my eyes the entire time. I cannot just stop.

The same is probably true for most of us. The time allotted before the pain becomes unmanageable is usually taken up with getting ready to do whatever task is at hand. By the time we are in the midst of doing what we set out to do, the time is up.

From the outside looking in, the answer to keeping the pain at an “acceptable” level is simple. Just stop. I daresay it would be easy if this was not our lives.

If it was just a a short term problem, a sprained ankle or a scratched cornea for instance, it is no big thing to keep our usage of the pained area to a minimum. When it’s a constant pain, the timed approach is not workable.

When I try to explain that to people, I see the eye rolling, the turning away: she doesn’t want our help. She doesn’t want to change her situation.

They have no idea how dearly I want that.

I wish we (I) could use the same tricks and ideas that work when pain is temporary.

But I don’t think we can.

The timer rang about 10 minutes ago. I added another 10 minutes so I could finish this column. And now I am paying the piper.

Do I regret forcing myself to continue past the time limit? Yes and no.

Yes, because now the pain is very bad.

And no, because I was able to finish what I started.

Reprinted from my column at National Pain Report

Wednesday, June 12, 2013


“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

I think most of us are familiar with those words.  It is the serenity prayer used by Alcoholics Anonymous.

As someone who has had chronic pain for over 30 years and only recently stopped writing “disabled – at present” when I had to fill in my occupation on forms, I have tremendous difficulty in accepting what I cannot change, at least when it comes to my pain.

I have fought for most of these 30+ years to change the pain.  Sometimes I have been successful, other times not, sometimes overwhelmingly not.

I am not sure when courage becomes desperation.  Just as an alcoholic hits bottom and says “no more” — we have to learn to say “I accept that pain is a part of my life and it is time to live with that knowledge, to make the changes I need to in order to accommodate the pain.”

Unlike alcoholics who cannot drink again, we cannot swear off trying to stop the pain.  It is a bargain, accepting the reality, but also knowing and hoping that medicine makes strides every day. What is not fixable now may at least be helped or stopped sometime down the road. Relying on hope makes the present that much harder to live with, makes the acceptance that much more challenging.

Support groups help.  Whether online, in person, or both it is good to be where we know we are not alone, that others know and intimately understand our struggle.  A place where we are free to share our fears and struggles, to vent and to know someone will hear us.  To know they are the same as us.  It is a validation that too many of us do not get elsewhere.

There is actually a group called Chronic Pain Anonymous. Should we be embarrassed or shamed because we have chronic pain?  The idea of a support group that invites the comparison of chronic pain to alcoholism takes the analogy way over the line.

At some point, we do need to look at how we live. Alcoholics talk about the alcohol taking over their lives, how they are powerless against it.  Taking back their lives means taking back the power.

When the issue is pain and the power it has over us, we need to make a choice, one that may be just as wrenching and as difficult as the decision to stop drinking is for an alcoholic.

We have to say, to feel it deep within ourselves, for me to feel it deep within myself, that I have given the pain authority over me.  We need to affirm it is time to take back that power, to let the pain be a part of us but not the overriding part.

Let us announce, as of this moment. Pain, you are not in control of me.  I am in control of you.

Friday, May 31, 2013


The choir banquet is coming up.  I have gone to the last 3.  They are nice.  The restaurant is nice, the food okay, the company good.

But.  The lights are bright.  No matter where I sit I have to look to the left and to the right to talk to people.  It is a codeine laden night.

Since my implant has died the pain from eye usage and movement has gotten worse, and worse.  I find myself doing less and less because of the increase of pain and the decrease of eye usage time.

Choir rehearsal, and the church service is very hard for me.  Rehearsal requires a lot of singing and a lot of looking at the sheet music.  In addition, the room is very bright.  Since it has gotten hotter there is also the movement of the fan.  The eye responds in pain not only to my moving it but when something moves in front of it so the fan is an additional problem.  The service is hard even though we only sing one song and 2 hymns (and an introit).

I do better after church when we go downstairs to 'fellowship'.  The light is bright but I am not as close to them as I am in choir where the ceiling seems to be lower, in addition to sitting on a higher level so we are closer to the lights.  There is no choir director to have to try and watch for movements to indicate when and how to sing.  Nevertheless, if I talk to too many people I can be in trouble with the eye.  The benefit is I can leave whenever I want.

The banquet requires too much of me.  I am not sure why but I have never felt I am a fully accepted member of the choir.  I try to talk to people or be involved in conversations but often am ignored.  I am not sure if that is me or them.  (Another topic for another post, do I give off the scent, "don't ask".)  Going is an inclusion.  The pain is an exclusion.  In addition I cannot drive at night so I have to stay no matter how much trouble I am in with the pain.

This year I have made the decision.  I am not going.  I am giving in to the pain and the fear of the pain.

It is a decision I hate to make, it is a capitulation I abhor.  And sometimes it is the hateful that is the right thing to do.

Saturday, May 18, 2013





When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”  Some talk about “payback” or say “Karma will get him in the end.”  I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:  Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?  After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”
Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.  A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.  But wait. She was right. I am brain damaged.

I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”  Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.  “You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”  Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”  “Whatever doesn’t kill you makes you stronger.”  The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade

Reprinted from my column on National Pain Report.
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Monday, May 13, 2013


 Ah spring!  The time to go through the closets, throw out clothes we don’t want or need anymore (or fit in), put away winter things and bring out the spring outfits.

I go into my pantry and am surprised, as I am every year, to see how many cans and jars have passed their expiration dates and need to be thrown out.

It is a good time too to look at the people in our lives and see if any of them may have also passed their expiration dates, not just friends, maybe some family and medical people as well.

I used to live in New York City, but Dr. Michaels*, my neuro-ophthalmologist, was in Philadelphia.

He suggested I find someone closer to home. He recommended Dr. Smith* and I made an appointment to see him.

I was uncomfortable from the moment I walked into Dr. Smith’s consulting room.  It was a hot summer day. The air conditioning unit was on. Any air blowing on my face was a major trigger for my neuralgia pain.

“Could you turn that down, Dr. Smith?  It is really setting off the pain,” I asked.
“If it really hurt, you would just turn it down yourself,” he replied.

No caring, no comprehending.  I stayed with him anyway.  I felt I had nowhere else to go, no other doctor I could see.  The pain speaks to me: “You have to have someone and Dr. Michaels has no other recommendations.”

I did not end our relationship until the day I read his chart note: “There are days like today I believe in her pain.”

Keeping him for my doctor as long as I did was a bad decision.  I knew he was wrong for me and yet I stayed.

Which reminds me of a friendship I had.

When I moved to a condo in my new town I quickly became friends with a neighbor. The friendship was based solely on neediness, on both sides.  For me the need was being alone in a new town, having no one, and having pain 24/7.

Every 3 or 4 years, she would break off the friendship.  Her reasons were specious; it was just something she needed to do.  Three or four months later she would call me as though nothing had happened and we would take up the friendship again.

It was clear to me that I needed to end the friendship, but I needed a friend more. Because my need was greater than the pain of the breakup, I went back.  And back again the next time. It was only after the fourth time she ended the friendship that I realized this was something that needed to be ended.

How many times do we look at the toxic people in our lives and decide our need of them is greater than the pain and problems they cause?

The pain often makes us needier then we might otherwise be; the ability to get out and about harder for us, the need for comfort and care greater than accepting that the succor is not coming or comes in a hurtful way.

“You are malingering” “You’re making this up.” “It really doesn’t hurt that much.”  “Why can’t you do the shopping today, why do I always have to do it?”

It is hard to spring clean.  But it needs to be done.  Whether I shampoo a rug, throw out those torn stained favorite pair of pants or say goodbye to people whose lives have been intertwined with mine but are hurters not helpers, I am always surprised at how much better I feel.

It is almost funny when I realize how hard it is to think about doing these things, how difficult they look and feel in my mind, and how much easier they make my life once I have done them.


This is reposted from my new column for the National Pain Report.

Sunday, April 21, 2013


It occurred to me after reading the suggestions people gave me for how to deal with the issue of my eye pain being t riggered by a lit candle that one of the problems we face is the individuality of not only the pain, but the minute specifics of it.

The candle hurts my eye.  Can you patch it?  Can you wear sunglasses?  That should fix it.

Normally, in the common world, it would.  In my world, it does not.

It is not the brightness of the candle.  Well, it is the brightness but not the brightness alone.  The movement of the flame is the problem.

My eye cannot tolerate movement as I read or follow someone walking, for instance.  For some reason, no one has figured out why, the pain is also quickly, immediately, triggered by movement in front of the eye, even if the eye itself is not moving.

There are some forms of M.S. where the person has trouble walking one day and the next they are fine (before it happens again)

You had the cane on Wednesday.  You didn't need it on Thursday, so why are you using it today?

(When I used a walker for a few weeks, after a surgery that left me very weak and more balanced impaired then usual, I was very surprised when a man I vaguely knew from my apartment building saw me on the street.  He stopped me.  "I saw you in the foyer not using your walker.  Why are you using it now?" I was flabbergasted, that he noticed and even more so that he questioned me about my use of it.)

Some days our pain is bad, or our physical abilities less then the day before. 

I understand why someone might question what they do not get.  Your eye is not moving.  Why would watching someone fan themselves hurt your eye?  You could get around yesterday but you can't today,.  How come?  You were able to bend down to tie your shoes an hour ago but you can't pick up the towel on the floor now?  It does not make sense.  I know even for me it sometimes seems surreal.  But, it is real. 

How do you explain?  Do you need to explain?

Life is full of inconsistencies.  Why should chronic pain be any different?

What do you think?

Friday, March 29, 2013


I pretty much hate the holidays.  I hate being alone.  I have been invited 2x over the past few years to someone's house, not family, and that was lovely.  I was so happy to feel "a part of" if only for the few hours we spent together.

I think about holidays from years ago.  When I was invited by my sister to her home where the whole family met.  (I have not been invited by family for probably at least 14 years.)

It was years after the pain started and years after they had effectively abandoned me.  What do you do though?  If  you have no one and you do not want to be thought of as the person they tell people you are, you go, thinking maybe this time it will  be different.

But it is not.

No one asks "How are you doing?"  They ask the perfunctory, "How are you?" but they do not want to hear more then "Fine."  The bright lights hurt my eye.  Asking if they could not have the candles lit is met with an eye roll and "Really?  I mean they can't bother your eye that much."  What do you say?  To persist in asking for what you need is interpreted as argumentative and hypochondriacal.

They do not want to know.  They do not want to hear.  They do not want, at the end of the day, to help.

So many of us write in the support groups about the nastiness, the refusal of belief, the withholding of help or caring that is encountered when we deal with our families.  When we go to the dinners and holiday festivities.

It is a hard decision.  It comes down to the question: What hurts less?

Is it more painful to be there and increase the pain so I can be with these people?   Or is it more painful to be alone and reminded by TV and the internet and your own thoughts that others are with their families, celebrating.  (Of course it is easy to forget about all the "well" people who have the same dysfunctional holidays and emotional pain.)

Is it more painful to increase the level of physical pain so we can be with these people because there is no one else; or is it better to stay by ourselves and not feel the emotional pain, and the physical increase of pain that is a part of being with and doing?

What do you do for the holidays when you have these issues?  If you are lucky you have friends who invite you over but sometimes that is not possible, or available.  How have you come to grips with it? Has your decision been helpful or painful?

Monday, March 25, 2013


As you may recall I received this reply to my post about doctors, patients and money from someone who self-described as an anaesthesiologist and pain specialist:
"...I get lied to and BS'd everyday by people trying to tell how to do my job, which usually involves them telling me that the only thing that will work in Oxycodone, not PT, CBT, BF, TENS, Diet, Sleep modification, Smoking Cessation, daily exercise, leaving an abusive spouse, stopping a job that is eating up their mind, soul and body, etc..."

I wrote in response a post about the need for equality and partnership with the doctor,  as opposed to being adversaries.

As a chronic pain patient, what is our obligation?  Is it different then the relationship between cancer patient and oncologist, endocrinologist and diabetic, general practitioner and someone with a cold?

To some degree I think the answer is "Yes." 

In the other examples the doctor tends to have visible, lab based proof of the patients' problem and condition.  He needs to rely on a cancer patient for the truth about their level of pain, but in that situation the truth is, by all accounts I know, accepted as reality.  Cancer and pain is a known combination. 

We, on the other hand, have to be believed to be treated. 

My disorder, trigeminal neuralgia, used to be very specific with few, if any, parameters outside of the textbook definition and description.  (They have extended the signs and symptoms so it is now no longer an automatically immediately identificable disorder.)

CRPS (chronic regional pain syndrome) does have visible effects.  Fibromyalgia, soft tissue injuries , other invisible treatment resistant pain often does not.  Treatment is reliant upon trust.

That trust is often broken when a patient comes in and says "I need oxycodone (or vicodin, or codeine, or other opiate)."  It  can also be breached when the doctor says, "Let's try PT (or another treatment) and the response is "I did that.  Didn't work.  I won't try it again."

The truth is some patients are liars, BS'ers, untrustworthy as angry doctor said.  Even for those who are not it can be hard to be believed  if we are demanding.  To go again to the cancer analogy, it is, I am going to make an assumption here, the rare person who says, I need tomaxacin (or other specific chemo drug, or drug.)." 

How do we fix this? 

Instead of asserting I need, I want, we need to work together.

"I have been on vicodin and it has helped me greatly.  I would like to continue with that drug.  What is your position on it?"  "I have tried PT, etc and have not had a benefit from it.  Is there a reason you believe it now can help me?"  Make it a conversation, not either side bullying the other.  They may have forgotten, or not know, what has been tried, they may have another therapist who works in a different way, the name of the treatment sounds the same but it is not, and so on.  They may have opiod policies with which you disagree.  If you decide to stay it makes no sense to ask for what will not be given/prescribed. 

"How dare he not give me that!"  "I know what I need and he has no right not to give it to me."  I have heard people say, "I am going to sue because he did not give me what I said I needed."

There is sometimes a belief that a physician must give us what we want, no matter what.

Angry doctor is sad.  I feel sorry for him.  He soes sound, as one commenter wrote, 'burned out'.

Nevertheless, his unwritten point can be valid.  If we are demanding we may well seem like liars and BS'ers.  We both, doctor and patient, have a responsibility to bring common sense and conversation into the examining room. 

And leave the demands and tantrums outside.

What do you think?

Saturday, March 16, 2013

WHO CARES? (The sarcastic vs the potential.)

"My (family, friends, colleagues) do not support me.  They say mean things.  They do not 'get" it." I read this over and over again in the online support groups.

I know the pain of having people turn away.  And the pain of thinking if I change something in me, if I do something...different, it will make a difference.

Recently I have been thinking about the people who are (were) supposed to be my family.

My father never believed in my pain, in the birth defect that caused it, or the diagnosis that was repeatedly proven.  Even when he was dying of ALS.  When I thought the end to our lives is when things can turn around. 

I sat next to him on the couch, my medical records in my lap.  I knew I would have to show him, for the umpteenth time the proof he had already seen, and been told, by me and by my doctors.

"I need you to acknowledge my pain and my disability.  And that it is a medical problem."  He had tried many times to convince me, and others, that my problem was psychiatric.   (My parents are first cousins.  I think a big part of his refusal to accept it was that he blamed himself.  I could be totally off on it.  There are other potential Freudian reasons.)   When my neuroophthalmologist showed him textbooks that described and showed pictures of why I had the pain his reply was swift.  "Don't you think she just needs a good psychotherapist?"

This conversation was no different then any other.  "I do not believe you are disabled or have this pain."  What was the point of trying?  Even when dying he would not, could not accept the truth.

My siblings never came to the hospital, sent a card, or flowers.  (That is not quite true.  SisterA came once, days after one of my brain surgeries.  We had not spoken in years but her major question  was "I love you, do you love me?"  I answered before giving thought to the question.  It was the only answer I had.  "I don't know.  I don't know you."  She was horrified by my answer, or angry.  She left.  That was the last I heard from her for a long time.)

I have written of the answer I got from my brother in law when I stupidly sent an email asking what I had done to sisterA that she was never there for me.  He replied: how you treated her and your parents.  But I treated her well.  Out of the blue she called me and asked that I go see her paternal grandmother (my siblings are half so this woman was not a relative to me.), who lived in NYC, as did I, a woman whom she had not known since she was a young child, if then.  I agreed, going to show her pictures  of my sister's children, this woman's grandchildren.  She was hoping there would be a response but there was none.   She never called me again after I told her what the woman had said, "It has been way too many years.  There is no reason for me to know them."

I saw all of my siblings at my mother's funeral, and my father's, but they essentially ignored me.  even when we had to get together for dealing with the will, when there was terrible behavior directed at me, not pertinent to this post.  (I had one more surgery after that, this time for my neck.  It was in such bad shape from a previous surgery that I was told "You can be paralyzed just walking down the street."  This was right after my mother died.  I told them about the surgery and how bad it was going to be.  No one cared. 

SisterB came to see me at my home after I had the operation.  I was wearing one of those large neck braces, was on a walker, terribly thin "fragile" as a nurse called it, and could either talk or breathe but not both.  She asked me "Did you almost die?"  I had been in a coma but do not know if I did.  "I don't know."  She stayed for a few more minutes, left and never cared enough to visit or call to see if I was doing better.)

After that  I heard from none until my brother sent me an email telling me that sisterA was very ill with cancer, and dying.  He also made sure I knew that he had taken her into his home for a period of time while she was undergoing radiation therapy, apparently an effort to reinforce how much they had not done for me.  It worked.  It  hurt.  A lot.   I left a card and gift for her at her house but it was never acknowledged, yet at her funeral a friend of hers told me how much sisterA had appreciated the gift and gesture.  Very strange, not a word to me but to someone I barely knew?)

I will not go into all the examples of their behavior, ways they treated me that were outright mean and nasty, or just lacking in any compassion, empathy or care.  (It is slightly cathartic writing it but I do it mostly to give a picture to the point of my posts.  It is interesting I feel I need to defend telling my stories, even here on my blog.)

Which brings me back to the word indifference and why it is important in how we react and respond to the ones who treat us so poorly.

After my book was published I sent an email to all 3 of them.  Since none had contacted me for many years I did not think they would care much about the fact that I had written a book.  I did want to give them an opportunity to read it and see if they felt I had lied about them, maybe libeled them.  If they did I wanted to deal with it now rather then later.  They never responded, never requested a copy.  My book publisher has a page on their site that allows you to see where orders are coming from.  None indicated books were purchased by any of the three. 

The opposite of love is not hate.  It is indifference,

My siblings are completely and totally indifferent to me.  When I think about wanting a family, about having a family, in fact seeing on facebook that I have great nieces/nephews that I have never met and probably have no idea I even exist I am hurt, to my quick, to be honest.  But then I think do I want to try and know these people?  The part of me that is dying for family, for connection, says "Yes." but the logical, sensible part of me says "No".  I do not want to be slapped down again as when I have tried in the past.  And they are indifferent to me.  I am no more to them then a gnat on a doorscreen, if that.

So what do I do?  What do we do when we have this gigantic need for family, friends, colleagues, to know our suffering, our pain, the emotional and spiritual as well as the physical?

I think we need to look at each of these people with whom we want the relationship, or who have hurt us, going out of their way sometimes, and look at the interactions we have had.

Sometimes the nastiness, anger, denial, disbelief is from someone that we know has feeling for us.   With them it may well be worth the effort of trying to get them to understand.   Other times, when looked at in the clear light of day, they have no sentiment for us. 

If it is the latter we need to let those people go. 

Because they let us go a long time ago.

What do you think?

Monday, March 11, 2013


I was surprised by the vehemence of a reply I received to my last posting.

The person who commented said he (she?) was a certified anaesthesiologist and pain specialist.

He said he gets "lied to and BS'd everyday by pain patients." who tell him how to do his job, meaning saying only oxycodone will help them.  They are not interested in his prescriptions of diet, sleep changes, TENS unit, life changes of leaving an "abusive spouse" , job they hate, etc.

He feels that the "real injury" is a "broken soul".

I feel bad for this doctor, and for his patients.

He sounds burned out.  Maybe he has been yanked over the coals by too many patients for too long.  It is sad because the term "broken soul" says to me he has empathy and sensitivity to the emotional pain people experience.  Or did have at one time.

This is one of the big problems with getting good treatment for our pain.  A doctor sees enough of the fakers and poseurs and he has had enough of us.   He then lumps us all together, those with legitimate pain and those who may have other agendas.

The point of the post was not the issue of money per se but that we need to be partners.  I referred to the fact that since we pay the bill we are a doctor's employer.   He tells me how much his education cost to "become your employee."

If I go to a lawyer I pay a fee.  We do not discuss why he decided to go to law school, how much it cost or if he is still in debt.  I hire him.  Often the first meeting is without cost to see if we can work together or if he can help me.   He either takes me on or he does not.  If he does, I pay his fee and am his employer. 

My friend owned a restaurant.   She worked like a dog, each and everyday.  She may have owned the business but the customers paid her for their food; they became her employer.  If they complained she did not say  "I was up at 4 am to get ready for you, this store cost me thousands of dollars to buy, you have no right to complain."  She worked with them to make it right.

I get the issue of  'it cost me hundreds of thousands of dollars to go to school.  I work to pay my loans back and then live a good life with the profit I make.'  That is very legitimate.  But.

But I did not make you go to medical school.  I did not force you to choose your specialty.  There is a sense of entitlement when you say I do not care if you pay me through insurance premiums or taking the money directly out of your wallet, I know better then you and there should be no issue of being partners in this endeavor to help you.

(I will write a part 2 about our responsibility in this relationship.)

Monday, March 4, 2013

DOCTOR , PATIENT,.AND (the unspoken) MONEY.

Sign in doc's office: "If you are a new patient and have a high deductible you will be required to pay $100.00 at your first visit."

I was incensed when I first saw it. 

For the most part insurance keeps the money part of medical care invisible: some of us may have to pay a (usually) small deductible for each visit.  Rarely do we have to pay a lot of money to our doctors, face to face, as it were.  (But it rarely is, if ever.)

I started thinking about the sign.  Wait a minute,  they are saying they do not trust new patients: maybe they will cheat me if they have to pay a good deal of money because of the kind of insurance they have.  I had better get at least some of it upfront.

But he (or she) is my doctor.  This person, whom I am invited to call by his title but who usually calls me by my first name.  This stranger who asks me to reveal what may be intimate information about my body, possibly about my life, but about whom I know nothing equally revealing.

We often feel like supplicants, begging, pleading to be healed, the doctor opening to us his font of knowledge and bag of balms.  We lay ourselves bare, hope exuding from every pore.  The relationship is slanted.  Money makes it, well, icky.

It can be looked at as a form of prostitution; the referring doctor (or hospital  friend, stranger, or even phone book)  the pimp, the doctor the prostitute, and us - the client with a bodily need that requires a fix.

In that scenario money is always the motivating factor. (I know the analogy is off a little, kickbacks to referring doctors are illegal)

For those of us who see the relationship as a skewed one, usually in favor of the doctor, maybe it is time for us to remember the money we pay, whether it is $0.00 (but remembering the cost of our insurance premiums) , $15.00, $100.00, or more.  This makes us his employer.  It gives us a higher standing then a dependent 'help me' petitioner.

We need not necessarily like our doctor but at a minimum, hopefully, we respect his knowledge and ability.  And we trust him.

The other side is that he must be someone who trusts us; our knowledge, intelligence, and autonomy as a person.

In most other business relationships there is an equality between the two parties.

We need to bring that to the medical relationship as well.

Monday, February 25, 2013

THE CAUTIONARY TALE. It doesn't work for us.

A member of the church came forward this past Sunday to speak about coronary artery disease and his experience with it.  He told his story to remind people about the necessity of not ignoring signs and symptoms.  His experience was a bad one (he came out of it doing well by all accounts, thankfully) and his point very well  taken.

I was envious as I listened to him.  Not of what he went through.  Never.  But of his coming forward.

I visualized myself, or someone else, with chronic pain doing the same thing.  That did not work.

It is not a universal experience, in  terms of having a cardiac problem or history.  Almost everyone  knows someone who does or did, or knows someone who knows someone.

I could not come forward and say, this was my experience and please heed it as a cautionary tale.

Saying "It is estimated that 116 million people live with chronic pain." is more or less meaningless.   The concept of 'chronic" pain is foreign to most people.  Acute pain everyone knows, and 'gets'.   Weeks, then months, then years of pain.  That does not make much sense.  Pain is solvable.  Your sprained ankle goes away, the broken arm mends, the appendix is removed.  If it is a disease, the disease is treated, even if it is a chronic one.  You may have to deal with the disease, take insulin, or undergo longterm treatments, but that is different then "just" having pain.

I sit through choir rehearsal or the church service.  This is very painful for me: the use of my eyes to read, the bright light of the room or the sun shining in the sanctuary, looking up and down as we walk down the aisle singing.  There is no one to whom I can turn and say "I am in so much pain."

Even if there was what can they do?  Maybe a pat on the hand or an "I know.  I'm sorry." or "I wish I could help."  That would be nice.  Honestly it would feel good to have an empathetic "I get it."  How frustrating that might be though.  To say the words but being impotent to do anything.

I am a 'doer'.  It may be my projection, the inability to actively help being so passive as to make words feel worthless.  Of course, they are not.  I would love to have those words said to me.  When they have been I feel an overwhelming sense of relief:  "I am heard."   Another day when I mention the pain, I get an opposite response and learn, anew, that an understanding of it does not mean 'I want to know about it."

If I say "I had heart disease.  This is how it happened, this is what happened to me, and this is what you need to be on the watch for." people listen.  After all, it could happen to them.  If I say "I have chronic pain.   This is why and how it happened." I cannot follow up with "and this is what you need to look for in yourself."  And it is that last part that makes all the difference.

What do you think?

Tuesday, February 19, 2013


I have not written about my personal journey.

One of the sites I frequent has some discussions ongoing about pain, pain treatment. 

A few of the professional folks there espouse, strongly and without room for doubt, that chronic pain is the result of unresolved childhood conflicts or a body response to the need for better nutrition, hydration, and other homeopathic remedies. 

They believe this regardless of the cause of the pain, unwilling to accept the reality that our bodies do have problems that require surgery, medication, other treatments, and may be unresolvable but hopefully still have the ability to be helped.

I am a big believer in an anecdote does not a population make.  That being said this is what has been tried to help me with my pain*:

Non Jannetta Procedure MVD (a specific form of decompression using a pad placed between the trigeminal nerve and an artery or vein that may be pressing against the nerve)  decompression left posterior fossa 1977 successful 99% for 3 mths.
Dozens of tiny vessels found throughout the area, from a partial birth defect called Sturge- Weber - Wyburn Mason

(Blood vessels grew back and 3 months later pain returned)

marcaine rhizolysis 1978 - no benefit (Killing the nerve, temporarily, with a novocaine type drug)

thermocoagulation rhizolysis, no benefit, addition pain V3, loss sensation V1, V2, V3, injury 44% to N.7 and damage N. 9 (99 +% resolved)  (Killing the nerve with heat)

Jannetta Procedure (MVD) – no benefit, 100% paralysis (L) face Dr. Peter Jannetta

non MVD decompression posterior fossa (area of the brain) slight benefit

trigeminal tractotomy – approximately 5 year cessation spontaneous pains, side -effect- slight infrequent slight balance problems have persisted (Killing the nerve at the root)

Dorsal column stimulator implant – 85% benefit, (implant in the neck)

removal dorsal column stimulator implant 1986 infection (unrelated to implant)

Dorsal column stimulator implant – no benefit,

removal dorsal column stimulator implant 1987 infection (unrelated to implant)

(A,P clamps C2 – C5 (12 screws) 1998 Kyphosis (my neck "fell down") (2nd to laminectomy prep for trigeminal tractotomy 1980 - going through the spinal column to get to the brain))

sensory cortical stimulator implant 20 – 30% benefit 1991 (Implant attached to the covering of the brain)

(Failed in 2012, not sure why, currently remains implanted, have turned back on, waiting for benefit they have history of taking up to a few months before see a benefit.)

I have also been tried on many drugs including, but not limited to: tegretol, gabapentin, prolixin, elavil, prolixin and elavil in tandem, percodan, demerol, morphine, tincture of Opium, hydrocodeine, cymbalta, lyrica, haldol, reserpine, depakote, depakene, dilantin, vasodilators, baclofen, and many others. (been so many years since inception no longer recall many of the names)

It never hurts to eat better, to drink more liquids, to try alternative therapies.  I have no problem with those who say "Have you tried (acupuncture (which I did to no avail), hypnosis (which I did to no avail), chiropractic, relaxation techniques, homeopathy meds, etc.?"  I do have a problem with those who say this is all that is needed to treat chronic pain.

It is not.  There are way too many of us to prove that thesis.

What do you think?


* (It would take way too much space to define all the terms so I will not but if you have questions I am happy to try and answer them. These are all brain surgeries.)
Trigeminal neuralgia has 3 areas, the forehead and eye and slightly under, That is V1. V2 is under the eye to midway tdown cheeck and V# middle of cheek to jaw. It is one sided although some can have it on both sides. Mine is on the left side V1 only.

Friday, February 8, 2013

I have done all I can do, and this is the best I can do."

I saw this title on a site I go to now and again.   The site was about business, the question put to the group: "How do you handle this?"

Immediately my thoughts turned  not to business but to various consulting rooms, various doctors.

"How do you handle the words, "I have done all I can do, and this is the best I can do.""

I have had a number of doctors say this to me.

The reaction is a combination of anger, despair, frustration, more.

What am I supposed to do now?  Is he saying this because he is too frustrated with not being able to help me?  Is he just being lazy, uncreative?  If he gives up on me where else can I turn?

I am not a Pollyanna.  I tend towards the pessimistic rather then optimistic. 

But I have to tell you this story:

The neurosurgeon who put in my implant also took it out when I developed an (unrelated to the implant) infection.  The implant had taken away approximately 85% of my pain.  Losing it was a monunmental loss.

He agreed to do a second about six months later.  That one did not work at all.  It turned out not to matter, because I also lost that one to an infection.  (Also unrelated to the implant.) 

I waited a few months and then asked the main, the only question.  "When will you put it in again?"  It was hard to let go of the memory of the fantastic, and somewhat unexpected, benefit of the first one.   The lack of help from the second did not diminish my enthusiasm, the sure knowledge I would be helped again as soon as the next one was placed. 

"I can't put in another one."  "What!"  That was never a thought in my mind.  Saying "No." had never occurred to me.

"You have been operated on too many times in the same area.  There is too much scar tissue.  It's  impossible."

No.  No!  What was I going to do now?

Before the implant I had no hope.  I agreed to it in the first place because there was nothing left for them to do.  I had honestly never expected it to work and then, when it did, I never ever wanted to have it removed.  (In fact I argued about it, insisted, "You can't take this out, I don't agree to it!" even when the infection made it a medical necessity (and I essentially became choiceless.)

"I have done all I can and there is nothing left I can do."  I was without the implant.  I knew what he said was probably true, between the 2 implants, two removals of the implant and a surgery in the same place years before when they tried to cut the root of the trigeminal nerve, how could there not be a massive amount of tissue in the way?  Nevertheless the implant was all the hope I had left.  It had been tried as a last resort: all other surgeries (available at the time) had been tried, all the therapies, all of the meds they could think of.

Ti say I was bereft would be a gigantic understatement.  Nothing keft. How am I going to deal with this.  Doctors had told me, years before, that 'rational suicide' was acceptable in my case.  I had gotten past that point.  Was that all I had left?

Dr. Barolat cared about me and had worked as hard as he could to help.  He had done all he could do, it was truly the best he could do.  There was nothing left to try.   That's it.

No.  It was not.

Dr. Barolat came to me one day and said "I have an idea."  It would be another implant but placed on the covering of my brain.  It would be 100% experimental.  I would be the 13th person in the world to have it.  I did not have to think long and hard about it.  Experimental or not, there was nothing left for me.

The implant worked.  Not to the same degree.  In fact I was not sure it was helping until I had to turn it off a few months ago.  But it helped enough to make a good difference.  (And I have turned it back on and am waiting for it to kick in again.)

Just because they tell you "I have done all that I can do, there is nothing else." it may still be too soon to give up, to accept the "No.".

What have your experiences been?  Have you been told "No." only to find out there are still "yesses" to be had?

Friday, February 1, 2013


This is one part of the service that has always bothered me.  "Now is the time for silent prayer."  As soon as you start to think the words the minister says "And now for the hymn".  Or similar instructions.

It makes sense.  There is not time enough to give more then 10, 20 seconds to the silent prayer.  The service must get back on track or it could take a very long time to complete.  .

You sing the hymn or say the written prayer but there is not time to read and really think about the words.

Why did I think about this in relation to us?

What happens we go to the doctor?

Most doctor appointments last for at most 10 - 12 minutes before the physician needs to go on to the next patient.

A minute or two is taken up with pleasantries.  "Hi. How are you?  Fine. Thank you.  And you?"

"What's going on?" The doctor asks.

"I have a pain here. "  "My pain has changed."  "I  have a new symptom."  "I just don;t feel right."

Thats another minute or two gone.

"Please explain what you mean by that."

By the time you have answered and he/she digests what you have said you are right up against the 10 - 12 minutes.

Then comes the pronouncement.

"I think you have (          ) and this is what needs to be done to treat it."

He/she names medications, therapies, even surgery or a referral to a different doctor.

There is no time to digest it, to hear the words, to really understand what and why he is saying what he is.

If you have a good doc, and he is not on a strict deadline, you may be able to keep him there longer to answer your questions.

More often then not, the time is not there.

Because of the time constraint we are often pushed to make, or feel we are being pushed to make a decision at that moment; to accept a prescription without getting a full rundown of the possible risks vs. benefit.  To not have the time or presence of thought due to the rush to say "I have tried that before, it did not work, or made me fell (          ) or I have heard bad  things about it, is there something else instead?

"Why do I need to see someone else?  Who is this person?"  Surgery, physical therapy, a procedure.  Is the time there to explore all of the minutiaea?

Usually the answer is No.

It is easy to want to rush into making a decision, to agree to something, anything. because of our need.

 Just like in church the information is there, the offer is there, the time is absent.

But as with prayer, we need to remember that the time is available outside of church, outside of the doctor's office.  No matter how rushed we feel, we need to step back and make the time for ourselves.

Friday, January 25, 2013


I stumbled across this site * and could not believe my eyes.

The founder is a physician who has worked in the field of addiction medicine for 31 years.
He initially refers to chronic pain patients who have become addicted to pain medication.

Okay I am with him so far.

There is a minority of pain patients who will become addicted to narcotic medications. The number is higher for those who have a history of addiction. My problem is that it is not for those who have a combination of chronic pain and opiate addiction, but specifically for those who live in/with chronic pain.

He makes a direct correlation between those who are addicted to drugs, in general, and those with chronic pain. This is where he loses me.

His first of 4 similarities between those with chronic pain and those fighting addiction is "INTRACTABILITY."

"An addict never stops being an addict. For instance there is no such thing as an ex-alcoholic." Addicts have a lifetime fight on their hands. They need all the help they can find. Only the strong survive. The addict doesn’t want to hear this but that is the reality.
Chronic pain patients never get over their pain. Oh at times it is better but the pain is always there. Unfortunately it is a lifetime struggle. Their pain is intractable. Chronic pain patients do not want to hear his."

No one wants to hear whatever disease/disorder they have will be a lifetime disorder but unlike addicts, who have to deal with a lifetime of potential craving for their drug(s), I know of no one with chronic pain who craves their pain. (There are always the rare people, as with any group, who get a "benefit" from their pain. That is very far from the norm.)
Most of those with pain do not want to accept the intractable aspect of their pain. I surely do not, and have not for that matter. But most of us do not go to any length, no matter what it is, to get relief. We do not go into back alleys, we do engage in illicit behaviors to get treatment, we do not beg doctors to treat us, no matter what the cost.
There are also many with chronic pain who do in fact get over their pain. Surgery, treatment, medications can and do work for some. If and when it does there is no longer a fight or slide back into chronic pain.


This shows a basic misunderstanding.

He writes "The alcoholic’s life revolves around alcohol. ... The addict thinks about little else other than the next drink of fix."

He goes on to state, unequivocably, "Chronic pain people are absolutely obsessed with their pain. “Pre-occupied” is too tame a word. Everything revolves around their pain. Their home, work and social life are severely affected by chronic pain and it is a lifetime sentence."

Being 'pre-occupied" is very different from working around the pain to create your day, your life. Our lives are severely affected by the pain. That does not equate to pre-occupation.

"LOSS OF CONTROL" is his next cross-similarity.

I need to use his entire quote: "The addict simply cannot control his or her drug use. The end result is trouble. There’s trouble at home, at work and there is no social life. For the active addict, the prognosis is always a downward spiral.
Chronic pain people lose everything too. Personal relationships go down the drain. Work life becomes a thing of the past. Social life becomes non-existent. There is no end to medical bills. Surgery after surgery, block after block, pain program after pain program and all result in disappointment and despair. Chronic pain people cannot simply get on top of their pain. They have to learn to live with it."

That we lose a lot is a given. That we lose it all: personal, work, social, is an indictment rather then a wonderment of the lives that many still claim, continuing to work despite horrendous pain, having spouses, children, relationships. Shame on him for not being able to recognize the fight that allows so many to continue to have good lives, deep relationships, in spite of the pain. By doing so they have learned to "live with it".

He also presupposes that we have no intelligent ability to say "No."; to treatments, therapies, medications. In a way it is applaud worthy, his getting an underlying truth: that pain is so incredibly hard to deal with, to live with, that one would want to accept anything offered. The other side of that truth is that, for the most part, we are educated patients, not exposing outrselves to any and all, because we understand the downside of many of the things offered.

He also has another lack of understanding in this comparison. "all (treatment, pain, medications, programs) result in disappointment and despair". That is an absolute fallacy. Many peple do find some form of benefit from their treatment(s). If you're lucky 100%, if less lucky, less then that, and very unlucky, a low or nil percentage. But he speaks in extremes and ignores a major part of the chronic pain population.

And his last "CONTINUED USE IN SPITE OF ADVERSE CONSEQUENCES." "Addicts are in trouble all the time", he writes. "...They can’t use with control, so use leads to abuse and trouble. An addict knows better intellectually but will continue to use. The end result is usually death. The terribly sad thing is that more often than not he or she drags those around them down with them
Chronic pain people follow the same pattern. I remember one patient who underwent over 25 major surgeries. When he was cut off prescription drugs, he drank a minimum of a fifth a day, often two. Post treatment, he was found dead six months later."

He uses an anecdote to make his point. An anecdote does not speak for more then the person spoken of in the anecdote. That is not to say the person he writes about is a singular story. It is to say that it is not the majority but a vast minority.

He ends this part of his article stating "Chronic pain people keep making the same mistakes. They keep hoping for some magical surgical procedure, some new medication, some miraculous entity that will take away their pain and who can blame them? The string of adverse consequences never seems to end. Sound familiar?"

I think he is right. Most of us do hope for that answer. He is wrong in that most pain patients do not stop their lives waiting for the magic bullet.

12 step programs have worked for millions, he wrotes. Absolutely.

Sharing of stories and experiences never hurt anyone, he says. Right again.

But, is there truly a one to one connection between those in chronic pain and addicts?

Only if you believe that those in chronic pain do not have a physical condition that often has stopped their lives in its track. Only if you believe that chronic pain is the result of environment and maladaptive behavior. Only if you believe that the majority of us have put our intelligence, logic, and comprehension on a back burner, accepting anything and all things that are offered to us without considering the potential implications and adversities that may make our pain even worse.

And why an anonymous program? I do not hide, usually, if I have diabetes, cancer, kidney disease, etc. Hopefully I let people know. I ask for help. They cannot offer if they do not know.

Society frowns on alcoholism, drug addiction, sexual, gambling addiction. Most do not declare it. It is a societal prohibition.

From this doctor's perspective, those in chronic pain should be looked on in the same way.

Monday, January 14, 2013


This was the sermon subject this past Sunday morning.  The minister talked about fear 'consuming' us, of not going forward because of it.

My thoughts, of course, immediately went to thoughts of the life with chronic pain.  How irrelevant and antithetical to the pained life.

Many of us are consumed with fear.  We live each and everyday, often each and every minute, filled with dread - or at least mindful of fear.  If I do thus and so how much pain will I have?  Will I be able to go to the store, will I have enough meds,  do I want to take extra medication to do thus and so, and so on.

I no longer have the spontaneous/triggered trigeminal neuralgia pains.  I do have the unpleasantness of 'phantom pain'.  Even though it is nowhere near the horrendousness of a tn pain I still flinch when  someone or something comes near my face. 

Before the service I was getting my music out of the cubby in the musicroom. 

I am short.   Ben, a tall choir member, reached over my head to get his music from a higher level cubbyhole.  He had no reason to wonder if he might touch against me, to wonder if touching against me would be a problem.  Immediately I tightened up, my breath stopped, Oh no he's going to touch me.  He is going to set off the pain.  He did not.  I was fine.  Was there a reason for me to fear?  You bet ya'.  That little/light touch would set off discomfort.  The discomfort would grow as I used my eyes to get through the quick rehearsal and then service.  The more I used my eyes, the more the eyelid on the pained side would swell, the sooner the discomfort would be outright pain.  The more the pain, the more medication I would have to take,.  The more pills I took the drier my mouth, the cloudier my mind, the lower my alertness, the harder it is to stay awake.

Living in fear creates its own stressors on top of the pain.  Is the fear we experience really fear?
For those of us with chronic pain is fear synonymous with acceptance?

That sounds counterintuitive - but think about it.  If I accept that if someone touches a part of me it will set off pain then I am accepting the reality of my life.  That includes accepting fear as a symptom or sign of our pain condition(s).  (With trigeminal neuralgia it is a sign.  I used to balk at any pretense of touch to my face.  My neuroopthalmologist used to use that as a teaching moment for his residents, See how afraid she is to be touched in that area?  That is trigeminal neuralgia for you. )

We do need to live in fear but, if we can tame it, if we can use the knowledge of what causes our pain to reduce our exposure to the situations that foster it, the pain losses some of its control over us and we become more the captain of our fate.

Wednesday, January 9, 2013

DEA and us. I started a petition...

I have posted this link elsewhere so some of you already know about it/have signed/passed it along but by putting it here I am able to spread the word a little more.

we petition the obama administration to:

protect those in chronic intractable pain from the DEA and its "war on drugs."

Those of us living with chronic intractable pain are finding it harder and harder to get the prescriptions for the medications that for many of us are all that is left for helping live with constant/intractable pain.
The DEA has taken its 'war" to our doctors offices and our treatments. Many physicians, afraid of the DEA, have stopped or reduced writing for opiods, which in turn has made it even more difficult for us to have the meds we need to get through the day, for some, just to be able to get out of bed in the morning.
For many it has made the difference from being able to work to going onto disability, costing more to the gov't and therefore the taxpayers.
We are petitioning to ask that our doctors decide what we need, how much and how often, and not the DEA."

Some people have told me this is not enough, we need to get the word out about chronic pain or the DEA is only part of the problem etc.
This is just one aspect of what we have to deal with.  If we can get attention to this part of our world as chronic pain patients it is at least a step in the right direction so I hope you will sign and pass  it on.

Friday, January 4, 2013


Many years ago my sister gave me a Christmas gift.

I opened the box, and saw the ugliest shirt I think I had ever seen.  It was a hideous shade of green with some sort of ugly orange amd yellow design.  There was also a ruffle somewhere if I recall.

I was staying at my mother's house.  As soon as we got inside my mother broke into tears.  "How could she be so nasty?  That shirt is so ugly, there is no way she didn't mean it to be mean."  I felt the same way.  I did not cry but I was angry.  Just don't give me anything then but why be mean about it.?

I put the shirt on, just for the heck of it.  I looked in the mirror.  "I'll be darned.  It's not that ugly once it is on."

It became my favorite shirt.  I almost always got compliments when I wore it.  And I wore it until it wore out.

I went to a doctor's office a few weeks ago.  The nurse wanted to weigh me.  I got on the scale, putting one hand on the wall and the other on the scale to balance myself.

"You have to take your hands off so I can get your weight." she said in a way that made me bristle.

"I have a balance problem so it will take me a minute or two before I can let go." I said in a snarky voice.

"I'm sorry.  I have never seen you before and did not know."

I jumped to the conclusion that she was being aggressive,  the 'you have to' a provocation.

As I waited for the doctor the incident with the nurse made me think about the shirt.  She forced  me to defend myself, to defend something that embarrasses me, something I hate.

The shirt may have had other meaning for my sister.  The enmity was there.  The reality of the shirt, the piece of fabric in front of me, able to be seen in a new way once it took a different form, was a lesson, the opposite of the cliche 'you only get one chance to make a first impression.'  Yes, there is only the one chance but it is important to give some things a second, third, even forth, chance sometimes.

I have written about how I feel about the pain, the disabilities and problems that have ensued.  My family taught me - keep your mouth shut, do not complain, if you do we will not believe you.    I am a malingerer, hypochondriac, etc, words, definitions, that are the opposite of my reality but words that took hold, words that continue to be my M.O.

"You need to..."   I heard it one way but it took a different form once she explained why she had said it.

Too often we hear the first words, "You have to, why don't you, why can't you, couldn't you just...." and take them as fighting words.  We do not listen to the next sentence.  We may not question the person, ask them to explain.  We may not take the sentences out of the box and see if the form is different, or can be made different.

As hard as it is to do we need to take a step back, breathe in and listen to the words.  Hear the way the person reacts to your response. 

Maybe, just maybe, what we heard was not really what they said, was not what they meant. 

Sometimes talk can be clumsy, words tumble without balance, we catch them in the wrong way. As they topple we juggle to make them fit what we think the form is, when between the two of us we can work to make them upright, and uplift both of us in the process.