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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, April 27, 2012


The true quote is "Hope is the thing with feathers." but I think gossip also has wings.

I was reminded the other day of an experience I had when I was a physician assistant student in 1974.

I started the program at the same time I was having a very bad pain issue with my left shoulder.

I had the typical symptoms of thoracic ooutlet syndrome. The pain was in the correct area. More telling was the missing pulse in my left wrist when I turned my head to the left. No one questioned that I had this problem. Except for a neurologist.

A vascular surgeon admitted me to the hospital. Although convinced of my diagnosis Dr W., a neurologist, was consulted. He came to my room, sat on my bed, and asked me to turn my head. He nodded to himself when the pulse disappeared. Then out of the blue, he asked "Do you have a psychiatric history?" An odd question given my textbook signs and symptoms.

I told him about two suicide attempts when I was a teenager, the second and last, cutting my wrists. He questioned a previous vascular problem, when I was 19: a blockage of my knee artery. It resolved spontaneously, no cause determined, a common situation. His next action was to decide I needed a sodium amytol interview - to determine if the two, the knee and this arm pain problem were psychosomatic. The loss of a pulse, in a knee and a wrist? Even if I had wanted, which I did not, to fool someone, I doubt I, or even my unconscious, would be able to pull off that slight of hand.

He gave me the amytol, asked me about the last of the 2 attempts. I felt myself fighting telling but I felt unable to not speak. Unlike TV I did remember what I had said. The same thing I had told him without the amytol.

Both wrists had been cut but he honed in on the left one. He decided I should not have surgery, the pain (and loss of pulse) a manifestation of (something) relating to the the fact that the left wrist had been cut.

The surgeon, thankfully, ignored his advice. He operated, and found two of the major vessels in my shoulder/chest area were juxtaposed. He fixed it. I awakened with no arm/shoulder pain. And a pulse I could no longer control.

When a few of the other students in my class came to visit, incuding two with whom I had, I thought, developed a strong friendship, I told them about the experience with Dr. W. I told because I saw it as doctor idiocy. It never occurred to me that people would take it as a negative about me. (I did not go into the specifics, just the amytol test.) To my amazement, and consternation, they stopped visiting me. All of them.

My parents came to the hospital but my siblings were 100% absent. I looked forward to having the classmembers visit. But the story took on wings of its own. When I returned to class I was somewhat shunned, the story evidently taking on a life of its own: she has psychiatric problems, stay away. Not one person said, "Hey, that's great they found what was wrong and fixed it. I am so glad you are no longer in pain."

That was many years ago but I see the repetition in later years of my life.

It seems that those of us in chronic intractable pain experience this more then others, because it is pain; because it is invisible, even when there are obvious signs, like a missing pulse.

What can we do about it, if anything? Is it a change in ourselves that we need? Is it even worth trying to change the beliefs, lies, and expectations of others?

Monday, April 23, 2012


I had an 'epiphany' the other day, as my friend Dottie called it. One of those 'Ah ha moments' where you shake your head and think Wait a minute, how could I not have realized this?

If you read an earlier post, long time back, you know I no longer have the typical trigeminal neuralgia pain: the spontaneous and triggered pains that hit like lightning inside your skin. Also gone was the atypical constant pain.

I consider the way it happened to be a Miracle, although everyone has their own interpretations. The reason I explain is because I was praying, thanking G-d that I could touch my face and not worry, not be afraid. Before the intervention I could not tolerate any touch to my face. Since then, 14 years this November, I can wash my face and hair, go outside in any weather, tolerate any touch to my left face and scalp without giving it a second thought.

I started my prayer "Thank you that I can touch my face and the words reverberated back. How amazing is this? I could never touch my face. And now I can.

Wait a minute. Wait a minute! That is not true. Not "never".

I was not always this person. I talk about when I was able to work, when there was no pain, when I did dinner theater, the most fun and best part of my life, but those are memories, pictures and feelings of a time so very long ago. They are real, and yet somewhat disconnected. I feel the truthfulness, the comfort and warmth of the good memories, for that moment when I relate them or think about them. Talking about them with others is enjoyable, they make me a part of the world again. Thinking about them tends to more often impart a sadness.

It is another instance of needing to change my thinking, as well as my perception of what my life is, and what it was.

There was a time when I was a lot more then pain, when I was a part of the world, when my ups and downs were the regular ups and downs of life.

Someone had posted a note elsewhere about there being two groups, those with CIP and "normals". That offended me. I am not my pain, I am a regular person, my life interrupted by the pain.

It is ironic. As I write this I realize I am of two minds, the one that expects the pain to be fixed and my life to continue from the point where it was interrupted by the pain. I will be 26 again, taking up where I left off, back to the aspiring singer/actress, making friends, finding my niche.

The other mind is the one where I started this post. There was no time before now, before the pain.

It is a matter of integrating: the knowledge that I will never get back the time between 26 and now and the acceptance that my present is not the always was.

I am not sure this is an "Eureka" that I want, but it may be one I needed.

Friday, April 20, 2012


"Perseverance is not a long race; it is many short races one after the other." (Walter Elliot)

When I think about the options available to us to help the pain, to stop the pain, I immediately think of my first surgery.

The neurosurgeon, Dr. Osterholm, did not want to operate. He agreed only after my neuroophthalmologist convinced him it was what I needed. After it was over I was immediately better, 100%, (only for 3 months but it was a wonderful 3 months.).

The problem with always going back to that operation is that no other procedure has worked that well. Of the ones that did help most were very short lived. Although I no longer have the spontaneous, triggered, and constant pain from the trigeminal neuralgia nothing, except for Dr. Osterholm's procedure, has ever effected the disabling remaining eye pain.

The quote about persistence speaks to me. I expect the great step, the gigantic step, the out of the box that is the answer to the eye pain question. I do not have the patience or desire to work on the small steps.

Sometimes luck and life is with us and all it takes is the gigantic leap.

Most times, though, it takes the smaller steps, trying the drugs, doing therapy, physical and sometimes psychological, to deal with the pain and it's effects. Seeing other doctors, getting second, even third opinions, trying a smaller version of a procedure, like a TENS unit before deciding on an implanted stimulator.

It really takes 2 P words: Patience. And persistence. You need to be patient to be persistent. Our race, like the one between the rabbit and the hare, will more probably be won when we let go of our inner hare and, like the turtle, plod on and forward, towards the answer we desire and deserve.

Monday, April 16, 2012


Yep, there really is one.

Pain Patient Bill of Rights

1.Patients have a right to proper, respectful, informed and nondiscriminatory pain management and care.

2.Patients have a right to choose and access health care providers who can provide proper, respectful, informed and nondiscriminatory pain management and care.

3.Patients have a right to have their pain managed with collaborative and multidisciplinary efforts.

4.Patients have a right to have their questions and concerns about pain and pain treatments addressed.

5.Patients have a right to ask for and receive a referral to a pain management specialist.

6.Patients have a right to receive accurate and understandable information about their pain, their health, their diagnosis, their prognosis, their treatment, their health care providers and the facilities in which they receive treatment.

7.Patients have the right to receive knowledge and information about all pain treatment options available to them before giving informed consent.

8.Patients have the right to participate in their pain treatment decisions. If patients cannot fully participate in their pain treatment decisions, patients have the right to be represented by conservators including family members and/or guardians.

9.Patients have the right to make informed decisions about their pain treatment.

10.Patients have the right to speak confidentially with their health care providers about their pain conditions and concerns; however, the privacy of this information can be compromised in certain situations such as a workers' compensation claim.

11.Patients have a right to have their pain and the conditions that cause their pain examined regularly and their treatments adjusted for continued or improved pain management.

12.Patients have the right to read and make copies of their health information, pain history and relevant records.

13.Patients have the right to ask their health care provider to amend or correct any information (both pain-related and not) in their health records with the understanding that a health care provider cannot change an original report.

14.Patients have the right to refuse suggested methods of pain treatment.

15.Patients have the right to have their pain-related medical bills and costs explained to them.

16.Patients have the right to complain about or appeal issues related to their pain treatment, health plans, health care personnel and health care facilities.

17.Patients have the right to objective and timely internal and external reviews of any complaint or appeal related to their pain treatment, health plans, health care providers and health care facilities.

Thursday, April 12, 2012


To accept where we are in life requires an acceptance of what has gotten us here. It is hard to reach hope if you are stuck in the 'it is not real', or 'it is temporary' mode despite proof to the contrary.

In thinking about this I realized that the 5 stages of grief, as set forth by Dr. Elizabeth Kubler Ross, commonly thought about in relation to the dying process, was just as relevant for us.

I am still stuck in stage 1 - denial.

I am also stuck in phase 2, anger, and stage 3, bargaining. Depression, stage 4, is a conundrum for me.

Depression is often defined as feeling hopeless and helpless. Each time the doctors say "Sorry, nothing else to be done for you." I am angry, there must be something someone can do. That belief also goes by the name of Hope. My helplessness is dependent on their offer to do something. The 'fixing' is out of my hands, only the professionals can 'repair' me. I am afraid of stage 5, acceptance. What if I accept the reality of my life, the one that has to be only temporary, because really, how can such a pain be permanent? How can the disability be undoable?

What if I turned it around, changed it from making my body, in my case 'only' my eye, the offender, to creating the life that allows for the pain?

Acceptance requires a new philosophy. It means saying "Okay, I know the pain worsens when I ( ) so I will stop before it gets to the unstoppable level no matter what I am in the middle of doing. I will stop the habit of waiting until the pain becomes overwhelming". For me the changes are many: I will need to accept having to take more codeine, to change the way I take it even though that means taking more, and more often. It means taking control, saying outloud and to myself, as many times as necessary "This is the way it is, the longer the path to acceptance, the harder it is to make the changes I need to have a better life". By fighting the truth, I make my life harder.

I wrote all of the above yesterday afternoon. I went to choir rehearsal last night. I took extra codeine, my mouth becoming so dry I had trouble singing, my mind 'clouding', my attention wandering. The pain rose as we went from page to page, song to song. It's time to go home. I was at the level where I felt I could do no more eye work. The pain was not going to get better by using my eye more: hopeless. Unless I left I was refusing to help myself: helpless.

I wanted to be there, I wanted to sing. I wanted to be with the people, the learning, and yes, the fun. To do that, to fight the pain, to stay, meant refusing to accept the pain, to accept the limitations. I thought about what I had written earlier. Is this the way to acceptance? Or a do as I suggest, not as I do?

Each time I write a post I am writing about my experience but hopefully also yours, raising questions and ideas for all of us to consider. I keep thinking it will also force me to work at making the changes I need to make. And yet, what happens if I make the changes? The main thing I have in my life is the choir. If I do as I say above I have to go home early, I have to cut down on the thing that I most look forward to. Fear, not acceptance, stands in my way.

The more willing we are to accept that the pain, and what has done to our lives, is a loss, something that we need to accept and grieve the sooner we can get to the point where we control our life and the pain, and not vice versa. Hopefully, at some point, I can take these words to heart.

Monday, April 9, 2012


I know I am a day late but I just wanted to send you some happiness and hope you are having a good day.





to everyone.

Wednesday, April 4, 2012


I seem scattered a lot of times, especially when I am at choir or choir rehearsal. (That is the main place I go where people know me and where my behavior is the most obvious.) I do not help the situation by using that as a reason for why I misplaced my music, or am not sure where to stand when we change the usual way of progressing to the choir loft. "Scattered is my middle name." I sometimes say as a way of explanation/joking my way out of my embarrassment.

The other night the choir director gave me some one one-on-one time.

I use a hearing aid, in one ear, mainly for church service and choir rehearsal. As a result I am very unaccustomed to it.

I wore it while working with him but took it out at one point.

When we finished I put my music away. Then I put my hand in my pocket to make sure the aid was there. It was not. I kept checking my pockets and turning the music scores and hymnal upside down. Nothing. I figured I should explain my behavior. "Oh no, I can't find the hearing aid."

I bent down, looking under the piano, checking under my seat, getting more and more agitated and worried. Then something made me check my ear. There it was. Absently I must have put it back in while I was singing. I felt the fool when I said "Oops. It's in my ear."

I was mortified. But was that scattered? I do not feel it in my ear after a while so I was unware it was there. I was happily distracted by our work when I must have put it back in. I looked ditzy searching for it.

At servive and rehearsal am I scattered?

Sometimes. I have to admit that. I had been out of the world for a long time. I never developed the habits of orderliness and organization that I might have had I been working or had a family. Old Habits carry over too. I remember, in school, oh so many years (decades) ago, messy notebooks, scrambling to find the right notes.

But when I think about when it happens or what I did that seemed ditzy, I realize many of the incidents happen when I am drugged or in a high level of pain. My concentration goes, I go, 'away'.

It happened in a special choir rehearsal this past week. I had to ask where we were in the music, realizing I had not heard anything that was said for what seemed like minutes, but probably only seconds.

Where had I been? Away, in that place where your mind is emptied, that place the drugs sometimes take you but sometimes too the pain. It is not active distraction; it is a blankness where you don't think or feel anything. A fraction of time when you don't feel the pain.

So the answer is "Yes". And "No".

Sometimes I am ditzy.

The other night at choir someone made a joke about me. "Does Carol have her music?" Everyone laughed, including me. I said "Yes. At least tonight." And they laughed again. It was nice. It was the first time that a joke was made, outloud, to the group, about me. It made me feel I was truly a member of the choir. The joke almost a group hug, we accept you and your scatteredness.

That time I enjoyed the ditz. It gave me an identity within the group. Most of the time I do not. Not because it is an insult. It is not. Rather because it means that the pain is really bad, I had to take extra narcotic, or both. It is in those moments of being 'gone' that I feel most the weight of the pain and what it does to me.

I think, maybe, I would rather be merely a ditz.