My book.

My book.
"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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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.