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.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Monday, March 4, 2013
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?
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
A SUMMARY OF MY JOURNEY.
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.
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?
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
IT'S HARD TO PRAY IN CHURCH.
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.
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
A 12 STEP ANONYMOUS PROGRAM FOR THOSE LIVING WITH CHRONIC PAIN. REALLY??
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.
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.
Next is "PRE-OCCUPATION"
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.
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.
Next is "PRE-OCCUPATION"
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
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.
____________________________________________________________________________
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
"WE NEED NOT LIVE IN FEAR"
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.
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.
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