"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.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Friday, April 20, 2012
Monday, April 16, 2012
PAIN PATIENT BILL OF RIGHTS
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.
http://www.nationalpainfoundation.org/articles/552/pain-patient-bil...
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.
http://www.nationalpainfoundation.org/articles/552/pain-patient-bil...
Thursday, April 12, 2012
GRIEF AND GRIEVING.
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.
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
HAPPIES.
I know I am a day late but I just wanted to send you some happiness and hope you are having a good day.
HAPPY BELATED EASTER
HAPPY PASSOVER
and
HAPPY SPRING
to everyone.
HAPPY BELATED EASTER
HAPPY PASSOVER
and
HAPPY SPRING
to everyone.
Wednesday, April 4, 2012
AM I A DITZ?
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.
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.
Saturday, March 31, 2012
THOUGHT FULL.
Last Friday I was talking to Jennie (pseudonym), a very elderly friend of mine. Her brother had been in a car accident and broken his leg. She started crying as she told me what happened. This reminded her of a comment he had made about her children not helping her. That led her to talk about the many unpleasant/upsetting things his children had done to her, things over which she had no control. These thoughts increased her agitation and disturbance, leading her into even more negative thoughts and memories.
I told her she was talking herself into being even more upset. Her children did not do what her brother said they did. They were good boys, very good sons to her, visiting her every weekend for the past many years. "There is something called thought stopping." I told her. "When you start thinking these unpleasant thoughts you say to yourself "STOP!". Then you replace the thoughts with good ones; how good your sons are to you, going to dinner with the new friend you made, good memories of your life, for instance.
I was at a memorial service on Sunday. The minister's father had died. As she spoke of him she recounted many good memories of the kind of person and father he had been.
What do these 2 things have to do with each other?
My father was not like hers. Charlie (what I called my father) was not a nice man, at least to me. Her stories led me into some very dark thoughts about my father. Does that mean that everytime someone tells good stories about their parents I have to start down the memory lane of bad thoughts?
No. I have to stop my own automatic negative train of thoughts and resulting emotions, but does that mean you have to quash all the bad thoughts, memories, and feelings? Is this a way to feel better or is it a way of merely repressing the bad?
It is important to differentiate. The thinking of only the bad about something that is in the control of another - the way Jennie's nieces acted was not her responsibility, nor can she change, is unhelpful. Thinking about it does nothing for her but engender more bad thoughts.
Thinking about what my father did and squashing the thoughts is hurtful. It has caused me to behave in ways very hurtful to myself. My swallowing the thoughts makes it impossible to find the ways to overcome what happened and change what I need to change. Ignoring it, pretending it is not there only lets it find other ways to express itself.
When we cannot do something, because of the pain, vs. allowing the bad behavior and remarks of others is the same issue. The acceptance of the 'cannot' is important in allowing us to let go of the was and accept the now.
What others do and say is in their control. It is their responsibility. When we hear it, when we think of it, when we allow it to continue to hurt us, we need to listen to the thought and tell it "STOP!"
I told her she was talking herself into being even more upset. Her children did not do what her brother said they did. They were good boys, very good sons to her, visiting her every weekend for the past many years. "There is something called thought stopping." I told her. "When you start thinking these unpleasant thoughts you say to yourself "STOP!". Then you replace the thoughts with good ones; how good your sons are to you, going to dinner with the new friend you made, good memories of your life, for instance.
I was at a memorial service on Sunday. The minister's father had died. As she spoke of him she recounted many good memories of the kind of person and father he had been.
What do these 2 things have to do with each other?
My father was not like hers. Charlie (what I called my father) was not a nice man, at least to me. Her stories led me into some very dark thoughts about my father. Does that mean that everytime someone tells good stories about their parents I have to start down the memory lane of bad thoughts?
No. I have to stop my own automatic negative train of thoughts and resulting emotions, but does that mean you have to quash all the bad thoughts, memories, and feelings? Is this a way to feel better or is it a way of merely repressing the bad?
It is important to differentiate. The thinking of only the bad about something that is in the control of another - the way Jennie's nieces acted was not her responsibility, nor can she change, is unhelpful. Thinking about it does nothing for her but engender more bad thoughts.
Thinking about what my father did and squashing the thoughts is hurtful. It has caused me to behave in ways very hurtful to myself. My swallowing the thoughts makes it impossible to find the ways to overcome what happened and change what I need to change. Ignoring it, pretending it is not there only lets it find other ways to express itself.
When we cannot do something, because of the pain, vs. allowing the bad behavior and remarks of others is the same issue. The acceptance of the 'cannot' is important in allowing us to let go of the was and accept the now.
What others do and say is in their control. It is their responsibility. When we hear it, when we think of it, when we allow it to continue to hurt us, we need to listen to the thought and tell it "STOP!"
Tuesday, March 27, 2012
GOODNESS GRACIOUS. WHY IS GRACIOUSNESS SO HARD?
I was very surprised on Sunday when talking with 2 other members of our church choir.
I mentioned something about my vibrato, that I had trouble controlling it. I did not think I sang very loud - in fact I thought I was fairly inaudible so I was very surprised when Mike (pseudonym) told me he could hear me all the way outside the choir room; it was an unpleasantness to the sound of the choir. Midge (pseudonym) sits next to me and told me it was sometimes a problem for her as well. It hurt my feelings to be told this; I was glad for the information because I was unaware. I listened and responded, somewhat surprised by the adamance from Mike, but I was okay with it, it was something I needed to know.
It is not as strong when I sing alto. I mentioned that and Midge suggested maybe I should change from the high soprano section to the alto.
I like singing the high notes but it is also easier for me. We usually sing the melody which allows me to easily learn it without resorting to a lot of relying on reading the music.
Singing alto would mean more eye usage. It requires more reliance on looking at the music in order to learn it. It would be a problem, whether enough to not be able to continue singing I am not sure, but it is something I would prefer not to try.
To my surprise Midge told me she was aware of how hard it is for me to be in the choir, because of the pain. I was so moved that she was aware of it and also that she was letting me know.
The odd thing is, as much as I was hurt by the negative information, I had no problem hearing it and talking with them about it. Hearing someone tell me they understand my situation, they know the struggle I have, that was so very difficult. I blushed, I stammered, I tried to push it aside "Oh thanks, but it's okay." I did everything but fall through the floor.
It is a strange thing. Compliments, empathy, compassion, those are hard to hear, hard to accept, no matter how much they are wanted and needed. How much easier is it to listen to things that feel hurtful?
The singing information was a learning situation for me, different, for sure, then say, an insult like 'your hair is greasy' or 'you smell' but it still hurt. So why is that more acceptable then a kind word or a compliment?
It makes sense that if you learn from a hurtful comment why can't a kind one be just as educational, even if the learning is only in the ability to accept the kindness and care being offered?
I wish I had an answer so I could end this post sounding really smart. Oh well, not yet.
I mentioned something about my vibrato, that I had trouble controlling it. I did not think I sang very loud - in fact I thought I was fairly inaudible so I was very surprised when Mike (pseudonym) told me he could hear me all the way outside the choir room; it was an unpleasantness to the sound of the choir. Midge (pseudonym) sits next to me and told me it was sometimes a problem for her as well. It hurt my feelings to be told this; I was glad for the information because I was unaware. I listened and responded, somewhat surprised by the adamance from Mike, but I was okay with it, it was something I needed to know.
It is not as strong when I sing alto. I mentioned that and Midge suggested maybe I should change from the high soprano section to the alto.
I like singing the high notes but it is also easier for me. We usually sing the melody which allows me to easily learn it without resorting to a lot of relying on reading the music.
Singing alto would mean more eye usage. It requires more reliance on looking at the music in order to learn it. It would be a problem, whether enough to not be able to continue singing I am not sure, but it is something I would prefer not to try.
To my surprise Midge told me she was aware of how hard it is for me to be in the choir, because of the pain. I was so moved that she was aware of it and also that she was letting me know.
The odd thing is, as much as I was hurt by the negative information, I had no problem hearing it and talking with them about it. Hearing someone tell me they understand my situation, they know the struggle I have, that was so very difficult. I blushed, I stammered, I tried to push it aside "Oh thanks, but it's okay." I did everything but fall through the floor.
It is a strange thing. Compliments, empathy, compassion, those are hard to hear, hard to accept, no matter how much they are wanted and needed. How much easier is it to listen to things that feel hurtful?
The singing information was a learning situation for me, different, for sure, then say, an insult like 'your hair is greasy' or 'you smell' but it still hurt. So why is that more acceptable then a kind word or a compliment?
It makes sense that if you learn from a hurtful comment why can't a kind one be just as educational, even if the learning is only in the ability to accept the kindness and care being offered?
I wish I had an answer so I could end this post sounding really smart. Oh well, not yet.
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