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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Saturday, January 28, 2012


"The federal government's Centers for Medicare and Medicaid Services is finalizing a new reimbursement plan ...Under the proposed rule, adherence to quality care measures will be weighted at 70 percent of the payment formula. Patient satisfaction surveys will account for the remaining 30 percent. "

Is this fair?

If the ratings are based on willingness to communicate rather then just walk in, essentially ignoring you as she does 2, 3 other things (I had a doc who was on the phone the whole time he was supposedly listening to me and why I was there.) that is a good idea.

If it is based on knowing you and your history (if a first time visit, actually examining you, not just a cursory listen to your lungs and heart.) that is a good variable.

Does the doc have the ability to empathize? Does she actually "get" what you tell her, does she understand the level of pain you are in? Does she believe you? If she doesn't is she honest enough to say "I cannot help you." and offer to find a doctor who might?

Does she see you not as a patient but as potential criminal, malingerer, drug abuser? Is her attitude one of working with you or against you (your pain isn't real, it is not as bad as you say, etc.)?

Does she see you as money in her account? She has not been able to help you but continues to insist you come back, again and again, holding out the hope of 'the next visit' will be the one where she has the idea that will help you?

When I googled 'medicare payment tied to patient satisfaction' I came across an article written by a doctor. He wrote that he did not think it was a good idea because it will result in giving patients whast they want rather then what they need.

A site for student doctors agreed with that. Most cast patients as stupid, people who would give them a good rating only if they started "recommending Big Macs and Hot fudge Sundaes to everyone." ("

One other big complaint: patients would want opiods and rate the doc bad if they did not get them. Chronic pain and chronic pain patients seemed to get the most ire from these docs and students.

I have stayed with docs who were awful and I have had docs that I wish had not retired or moved, docs I would literally lay down in the street for and say "Go ahead." to whatever they suggest.

Should those good docs get paid more? They had good communication skills, empathy, decency. I have also had awful docs who had these skills. And a few, very few, docs who would score very low on these qualities but high on the 'helped me' scale.

What are the qualities that make a doc good, that cause his patients to give him a good rating?

If he has these qualities and if I paid him out of my own pocket would I be willing to pay him more?

It is definitely a question worthy of discussion.

Thursday, January 26, 2012


I was watching the coverage yesterday of Rep. Gifford's resignation from the House. People were standing, members from both sides of the aisle were teary eyed, hugs abounded.

What happened to her was horrendous, (as what happened to the other 13 people injured who have not been named and in the news (much less the people who were killed). It has been obvious that she is a very well loved person, within her immediate life as well as professional.

I felt guilty as I watched. Guilty because a part of me was angry and jealous at the love being sent her way. At the amount of help and support she had, and has, to help her in her recovery.

When I was at the neurosurgeon's, to talk about the problem with my implant, the possibility of another surgery was broached: have it removed or have it replaced.

The surgery for putting in the current implant torture. I was given a general anaesthesia and then awakened, repeatedly, as Dr. Barolat triggered the horrendous, excruciating trigeminal neuralgia pain. When the pain was the worst it meant he was in the right place. Could I even agree to such a thing again? I did not know - but surprisingly, even to me, that was not my first thought.

My first thought was - Could I go through this again, completely by myself? Watching the Giffords piece my thoughts went to the same place.

How is it some people have so much support, so many people pulling for them? I had to relearn to walk by myself, no one to cheer me on. I went down to the OR 9 times without anyone to see me off, or even for me to talk to, other then non-involved professionals. (I asked a nurse before one surgery "I know you won't mean it but could you just say the words, "I am sure you will be okay." I repeated my promise, "It's just words, it doesn't mean anything. I know you won't mean them. I just need to hear it." She refused.)

The implant is not working. Each time I change the parameters (of how it works) I feel the tingling of stimulation but then it quickly stops. One time it seemed to help but that lasted only a few hours. It has not happened since.

Yesterday morning, frustrated by the lack of progress, fearful of my options, I turned up the amount of stimulation. And then turned to the TV. The picture of Rep. Giffords and a whole congress, even those against her before the shooting, applauding, crying, and encouraging her filled the screen. How wonderful for her, said my head. How come it is there for her and so many others. but never for me, asked my heart.

To all who are alone with their pain, this blog allows me to tell you you are not alone, even if we do not know each other in person.

To all of you who have family, friends, colleagues who support and help you, be grateful and embrace those who 'get it'. You are very, very blessed.

Monday, January 23, 2012


Yesterday I went to church. Because the stimulator is still not helping (or working, not sure which) I knew that would be at least a one codeine hour. The pain got bad enough to need another half a tablet, but I refused to take it because the congregational dinner would start in another hour. That would definitely be codeine time.

I did good during the dinner. I guess it is habit now talking with one, two tops, people at a time, concentrating on looking directly at only one. I got away with not taking any pills.

Then there was a concert a friend was giving. Every time she invited me it was always at night and I could not go. Once it is dusk I am unable to safely drive (well I could if everyone else got off the road but the chances if that are pretty small.) This time the performance was at 3:00 in the afternoon. I could get there, even if I would only be able to stay for an hour. I was very excited, and very nervous. Would it be pain time? Probably.

I got away without taking anything. I had to fight the pain but it was not horrendous. I knew an hour would be about the most I could tolerate.

Luckily the group took their break at the one hour point.

We had not seen each other for some time. We were able to talk for a few minutes before the other concertgoers came out and wanted time with her.

Sadly, I was kind of happy to be leaving because the pain was breaking through. I did not want to take a pill or leave thinking about the pain and feeling the pain and the ick of the narcotic.

It was one of those good news, bad news times. I was glad to be leaving and not doing anything to make the pain worse. I was terribly sad that I was losing a chance to talk with and hang out with people who looked to be interesting and fun.

I was kicking myself emotionally as I walked to my car. Look, if you stayed the pain would have been terrible. You would have lost a lot of what people were saying because of the way the codeine makes you feel. You would have enjoyed and been miserable at the same time. What fun is that?

The damn pain!. That was my mantra. I kept repeating it. If it wasn't for the pain I would not have to be leaving already. If the eye just stopped being so annoying and unable to tolerate the headlights...well.. I heaved out a gigantic sign of resignation and anger - at myself and my situation. The damn pain. THE DAMN PAIN!

Oh, wait a minute It's not the pain. I forgot. I have a baby cataract in the right eye. That's what makes the glare so bad I can't tell one car from another once it's dark and their headlights are on. Oh. Right. It's not the pain. Well *^$%^*).

I have often said to doctors "Boy, it would be nice for you to just say, I know what you have. You have the flu. It is so frustrating that I don't just have something that everyone gets."

But I do. It is that 'what everyone gets' that makes it impossible for me to drive at night, to go to school or seminars or groups that meet at night. It has always frustrated me terribly. Going out at night is one way to meet people. I would take extra codeine for that.

It used to be the pain. My left eye was always blinded momentarily when a headlight came at me. The pain was the reason for everything wrong, for all the things I could not do.

And now it is not.

I sure am glad it is not the flu and I wish I did not have the cataract (It is in the good eye and small, no reason and possibly dangerous to remove it) but it feels good, as strange as that may sound, because now I am one of the many.

Friday, January 20, 2012


We learned a song in church chorus the other night. Part of the verse went "You have given to me all the love I have found, I want to thank you Lord."

I like the song and found myself humming it alot, coming back to the words again and again. They rattled around in my mind, The longer I thought about them the angrier and more depressed I felt. "For all the love I have found"? How can I say 'thanks' for that?

My family abandoned me, I have no family of my own (husband, children). I have a sad life history, as a result I have never even had a first love, much less a second or more. That stinks. "Love I have found? Yeah. Right.

Wait a minute. Does it have to be bad? I have not found love so gee, thanks a lot. The people who are supposed to be my family turned their backs on me. I never had that high school or college sweetheart. I have no family to lovingly take care of and to lovingly take care of me. (Heck, on many days I would take unlovingly - but only in theory.)

For the love I have found -

My nephew loves me, and I him, but we live far apart. It is a relationship forged only a few years ago. We email alot, sometimes once, even twice a day. But he is not here in front of me, to hug and talk with, to look at eye to eye, expression to expression. That does not dilute the love. That does not make it absent.

My best friend moved away. I think we can say we love each other although it is the same as with my nephew. It is not in the here and now, right in front of you, so near it is touchable. Does that negate it? Of course not.

Even my cats. I love my cats. They're cats. They have food and litter and warmth, and even cuddles; at their sole discretion. It may not be doglove but I think it is still a form of love.

It is not a life of hollywood love and relationships, of Jane Austen and Little Women family and romance, but there is love.

It is so easy to see things in the negative, in the absent. Turn it around, inside out and upside down, and it may turn out the positive was there - in front of you - all the time.

Wednesday, January 18, 2012

ERRORS IN THINKING. (Mine is missing from the list)

This list comes from cognitve therapy.

Many of us in pain are prone to one, some, or even all of them.
Cognitive therapy believes recognizing these 'mistakes' helps you to overcome the habit of the erroneous thinking.

All or nothing - everything is black or white, One mistake and you feel like a complete failure. The treatment did not work. It is me, I am the failure, not the treatment.

Overgeneralization - If it happened once, it will always happen. If one treatment did not work, none will. Ever.

Mental filter - filtering out the positive. My ( ) was nasty to me about the pain. You ignore the people who have been kind and understanding.

Disqualifying the positive - Hearing the negative even in a positive statement. "You look nice today." Instead of accepting it you think they mean "I don't look like I have pain and he does not believe me.

Jumping to conclusions, Fortune telling - Imagining something bad: the pain will only get worse, I will become completely disabled and unable to do anything.
Mind reading - Someone ignores you. Immediately you think 'they do not like me.', or 'they think I am a malingerer or hypochondriac'.

Magnification, minimization - making things too big, or too small. I have a new symptom or pain. It is all you can concentrate on, making it bigger and bigger in your mind. Or, I have a new symptom or pain. My research or knowledge lets me know I need to have it checked out but I am going to ignore it because I know it is nothing.

Emotional Reasoning - Emotions are reality - I feel like no one believes me, therefore I am a fake, my pain is not real.

Shoulding - I should go to the party. I should be able to (tie my shoes, walk to the store, etc.) When you know you cannot do it you feel guilty, bad, angry, and other negative emotions, despite the fact that this is something you truly could not do.

Labeling and mislabeling - Big overgeneralization, calling yourself names. The pain stops me from doing ( ). Since I cannot I am a loser. I call myself that when thinking about who I am.

Personalization - deciding that you are responsible for something that you did not do. The doctor did not give me a name for what I have or a treatment, I must be a lousy patient. It is my fault she could not help me.

I am a practitioner of way too many of these.

Strangely, although I think I am a pessimistic person, mostly by virtue of my life experiences, I cling to pollyanna thoughts, a number of these 'errors' rolled into one main construct: The first surgery worked so there should be, in fact I know there is, the one thing (meds, surgery) out there that will "fix" me. All or nothing, shoulding, overgeneralization, jumping to conclusions, magnification, emotional reasoning.

As I write these words, I realize my error in thinking has one name. Hope.

Is that an 'error', a mistake?

I often hear, "You need to accept the pain, the disability. It's hard but it would help take you to a place of peace, and centeredness."

Maybe that is true; but I feel like it is the giving up of hope if I accept the pain, accept my situation.

My 'error' is not in the list.

Accepting 2 realities at once - Hope, and the current truth. And knowing one does not cancel out the other.

Monday, January 16, 2012


I saw the neurosurgeon last week about the problems with my stimulator.
I sat next to the company representative as she spoke on the phone with a company engineer. I could not tell what the other person was saying but Susan's (pseudonym) expression gave me an idea of the the way the conversation went.

Susan: "When I check out her stimulator using the main computer I get numbers that don't make sense."
Engineer: "Hmmm"
Susan: "She had that terrible burst of stimulation a while back and has been afraid of it happening again. "
Engineer: "Hmmm"
Susan: "Since I am getting information when I check it that does not seem to make sense, can you give me an idea what might be wrong or what we should do about it?"
Engineer: "Hmmm"
Susan: "Thank you."
Me to Susan: "So?"
Susan: "He said, 'If it is working, it is working. And if it isn't, it

Oh. Okay. That did not put me much further ahead then all the times my questions have been answered with the all-purpose "Idontknow."

"Why do I still have the eye pain? Will the stimulator help? Are there drugs or other treatments? There must be at least one other person who has this eye pain, what do they do?

I know the doctors and surgeons do not enjoy, at least most of them, saying they have no idea how to fix me or why the pain remains. Nevertheless the ubiquitous "Idontknow." is usually there, and very frustrating.

When I had my first implant, in 1986, I was given a main computer that usually only the doctors have. That lets me change a number of the parameters: how fast the stimulation, how wide apart the pulsing, the strength of the stimulation. Because I can program it myself I am trying new combinations I have never tried before. One change, making the pulses much more close together, has changed where I feel the stimulation. It may finally be getting to the eye and eyelids, something it has never done before.

This is one of those, "You can turn it up if you want, change what you want because we have no clue of or what might work for you using it." or "Idontknow. Do what you feel okay doing."

It is also what many of us say or feel. "I am used to what I am doing for the pain. It seems to be working so why change it?" (or for me: "I am not sure it is helping but in case it is I do not want to make any big change.")

A few months ago, when out of the blue I had this terrible surge of stimulation, so strong it scared me; enough that I was afraid to have the unit on for more then the minutest of stimulation, I was afraid to increase it, at all. I did not know if I would ever have the nerve to turn it higher, or get a new one put in if I had to.


Now I have made the 'big change" I feel okay. I can feel the tingling; but it is not bad and should go away with time.

I have to admit even though I seem fine, I am afraid of it. When you have one of these implants you are supposed to always carry a magnet with you. This lets you turn it off immediately, in case of trouble. (You hold the magnet up to the battery and it turns off the entire unit.) I stopped carrying mine years ago. Now I never leave home without it. It is my 'just in case' talisman.

I held onto the tried and true and known to me treatment while fearing to make any changes.

It looks like the change(s) I made may help. Sometimes as fearful as it feels, it is necessary to brave the fright and forge ahead. You never know if the right treatment, drug, even surgery, may be right around the corner.

Gritting your teeth and letting go. Sometimes the best plan of all.

Thursday, January 12, 2012


My first doctor wrote this line in my chart, "She is becoming psychologically victimized by her pain."

That seemed like such an odd thing to say. I had never heard of that concept; it did not make much sense to me.

It was within a year of when the pain started. I was virtually housebound. I had pain all day long, absent when I slept, and the spontaneous and triggered pain, caused by any and all touch as well. I was a mess. But a victim?

"...a person or thing that suffers harm...from some adverse act, circumstance, etc. e.g. victims of tyranny." The pain was a tyrant. It did have "Absolute power." It was "exercised unjustly (and) cruelly:" (The Free Dictionary)

The pain singled me out, coming after me with a vengeance. A definition of victimization: "Unwarranted singling out of an individual ... for unfair treatment..."

"Unfair treatment"? It was a lot more then that. It was in control, it held all the cards, controlling me, forcing me to bend to its will. It was torturer, bully, devil. It imprisoned me. The tower named PAIN, the chains called trigeminal neuralgia. It held me, squeezed me, deflated me, deformed me.

The treatments and tests were a rack, pulling me in 20 different directions. Surgeries making me worse, medications befuddling my mind, filling my mouth with the feel of cotton, drying me out like an old raisin. Tests causing more pain, more questions, more need to defend myself. Hope seeping out like helium in a pin pricked balloon as it folds into itself, sinking to the ground.

How to stop it from strangling me, tying me in knots, chaining me to the feeling?

Sometimes I think it just happens.

I know that is the easy way out.

But honestly, once the rhythm sets in, doctor, medication, surgery, whatever it is for this day, this week, this month, it becomes habit I think: just a part of your life, your routine. It is pain but it is also the brushing of your teeth or the Monday morning ironing of your clothes each week. Time to take the pills, to go to physical therapy, to sit in the dark and wait for the worst part of it to pass so you can come out into the light, be a part of life again, at least for the time you can get by without it screaming inside of you, without the pain raising a ruckus.

It starts out running roughshod - over you, your life, your plans, your dreams. Slowly it becomes a part of them as they change, as you change, accomodating it, bringing it into who you are, who you have morphed into being because it is there.

If and when we are lucky, when karma comes our way or the stars align just right, we get better, the pain releasing us, going away, evaporating into the air, letting us breathe freely again. And even if some of the pain refuses to go, the lessening of it makes its presence more bearable, more tolerable.

As the time passes, no matter what else there is to do, the pain must be tamed: to take away its status of giant, proprietress, dictator.

We have the ability, the strength, the tenacity. I know you do, even I do, because we are still here. We struggle, we fight, we are vicous in our effort to kill it, to diminsh it, and its hold on us.

"Victimized" by the pain? No, you say to it. I say to it. I am the one in control here.

Monday, January 2, 2012


I hope you had a good holiday and that the new year will be a good one for you.
My wish for all of us is less pain when possible and easier days all year.
To all my readers, old, new, and future, I am glad you found the blog.