Post by vickie on Aug 3, 2008 17:01:31 GMT -6
Godseveryone, it's been awhile since I've been on line but you know how life goes you try to be busy no matter how you feel but I've been doing a lot of thinking and wanted to share my thoughts on this matter.
I believe that I have a fairly good relationship with my pain doctor, okay I admit I have a much better relationship with her nurse Sharon, while having her own medical problems never seems to not have enough time to be encouraging and I love her for it.
I am wondering how many of you out there in cyberspace have the same relationship. We plan our visits with an almost religious fever, what we are going to say and not say (and somehow the not going to say becomes the most important) We hope that the doc can read our minds about how we really feel and aren't telling. And sometimes we just want to talk, we want this doctor whose lives we have willingly put in their hands will just put the pen down and listen to us, to read between the lines of our lives and see the real person who is ill, who hurts, who is sad, or have a laugh at something funny that happened, or an accomplishment we had that we couldn't have had last month, or even last year.
I know for myself the scenario of my office visit goes like this, I start the worry about a week before the visit, counting down the days, I plan what I am going to say, what I want, how I want to be treated, how she is doing herself if all is well. The morning of the visit, (I always have my appointments early in the morning) I walk in pay my deductible and in truth never ever wait for more than ten minutes (Now I have jinxed myself
) when called in I chat with Sharon who is always listening and willing to lend a shoulder. The wait in the exam room also is never more than a few minutes my doc walks in quickly goes over her paper of what drugs I've been on and asks me how I am. I get the distinct impression she has so many patients that in truth she doesn't really know me as a person, she knows me as a patient, and then only in what she has gone over from past visits on an exam sheet the few minutes before walking in the door of the exam room and not a living breathing person who is hurting, who is afraid, who is sad. I know that part of it, is most of us, me included put a smile on our faces and tell them that we are doing okay. We don't tell them that over the last two months we have had to have someone come in and take over the care of our grandkids because we hurt so bad. There is to much to go over about pain meds and whether this one will work or whether the paper you have read on the internet has any substance or not. You know that you only have ten minutes to talk to this person because she has taken on numerous new patients that want to get off of pain meds and she is the only doctor in your town that has the new drug that helps people. You are deflated when you get your prescription for more drugs but nothing is settled and you are sent on your way to plan what you are going to say for the next appointment that you know you are never going to say.
I am wondering, as I sit here wait for my appointment next week, if maybe having a liaison between the doctor and patient is warranted for pain patients. I would like to have someone that is available to me that I can talk with safely and in confidence about what is going on in my life, how afraid I am in the morning and my legs work a little less, how I don't see the point in being given the same drugs over and over that don't help only to hear that this is what is best for you because I don't believe in some of the drug therapies you have suggested. I would like to have a liaison that can be a go between patient and doctor and maybe this person can see deeper into the patient than the doctor can. I understand that palliative care doctors are these people and in the past have primarily been used for end of life care but have slowly been entering into the area of chronic illness. I would like to know if any of you are using this area of care. I would like to know if anyone thinks that having a liaison between doctor and patient would be a good thing. I think that if a liaison were not present but could convey to doctors what the patient is feeling on a day-to-day or week to week basis when they walk in the exam room door they would be a little more up-to-date on what the patient is going through. To me ten minutes is not enough for a person like myself to get to the bottom of what is going on with me at any given moment. I know that ten minutes is not enough time for me to tell her the pain I'm having, the fear that I am depressed and maybe that is making the pain worse, I want her to listen to what I have to say and I'm sorry, as compassionate as she is ten minutes is just not enough time. So where do you go what do you do? Leave after ten minutes unfulfilled about how you feel but you have that damn script in your hand with chances are a drug that isn't going to help but is her hope will work.
Most of you know who have read my posts know that I have had issues with pain meds good and bad over the years have learned to never ever self medicate no matter how bad the pain is even when the though of taking a couple of extra pills might help you through the day, but are terrified of doing so for past reasons and for the fear of being branded a drug addict. I have been on morphine 15mg 3x4 times per day that doesn't help at all. I have had to have people come in to watch my grandkids a number of times over the last couple of months because the pain has been so bad I can't move, yet when I call to make an appointment to see my doctor before my set appointment I find that I can't make an appointment until after my set appointment. I realize that docs have to make a living and they have to see patients but shouldn't they keep their new patients (her new patients appointment calendar is out past October to me that is crazy and wrong) I realize that maybe there isn't enough doctors for the amount of patients but what is one to do? Decrease the care current patients receive for new patients who deserve also the utmost time and care? I am sitting here weaning myself off of my pain meds because I don't see the point of injuring my body with drugs when they don't help, I'm down to two tablets a day and will be off by the time I have my appointment, which will ultimately lead to taking drugs again because the pain is so bad. To me it is a cycle that is never-ending give up, get more of the same drugs but maybe a little stronger, give up again and on and on with nothing ever changing because you can't talk, the doc has her own beliefs and has no time.
Is there a way that we as a people can tell our doctors that we come first without hurting the people that are patiently waiting for their appointments? How do you slow a doctor down and tell Medicare, insurance companies that my patients come first and if it takes more than ten minutes than it takes more than ten minutes. How do you get a medical establishment to listen to patients needs that new doctors need to learn to slow down and listen to their patients to teach them how to try and read between the lines or catch key words a patient says that maybe this patient needs more time or more care than they can give, that maybe this patient might need a different doctor, or maybe the patient and doctor are not a good fit and the new doctor can refer him/her to a new doctor with no hard feelings on either side. How to we teach a society and I am mostly talking to people my own age who were taught to believe that doctors were demi-gods and knew everything that what they said or did was always right and for the best, how do we teach these people, myself included, that doctors are people too and they don't always know the answer, don't always know that their patients need more time. How do we teach a society that is petrified of their doctors to speak up and say this is what I need and what I want or you are fired? Especially now when pain doctors or all doctors for that matter can red flag a patient for speaking up? It exemplifies the fear patients have of talking with their doctors. How many would be more honest if they didn't have that fear also floating over their heads especially when they live in a semi small town?
I don't know the answers I just know that I am one of those people, that I talk tough on paper but in a face to face appointment everything I feel, think, or believe goes out the window. I know that part of the reason is fear, fear of being called an addict, fear of feeling helpless in the face of this disease and knowing that there is nothing to be done and everything I do is just treading water waiting for the inevitable to happen so in truth what is the point of seeing a doctor in the first place other than to listen to me and help me believe that life is not hopelessness but has openings we may not know of, and fear of hurting the doctors feelings.
That is why I am suggesting a liaison between doctor and patient who can be that voice for the patient. Someone who can be present when the doctors go over their patients that can sit at that round table and say I've talked with this person and this is how she/he is feeling, maybe no suggestions just information. Or maybe chronic illness people can find a palliative care doctor who can be the liaison, or is the pain doctor supposed to be the palliative care doctor? I don't know.
I hope I can get others opinions on this whether for good or bad, I know that there are people out there that have the same feelings I have. Let’s hear from them and get this rolling or tell me that I am crazy and way out of line.
Vickie
I believe that I have a fairly good relationship with my pain doctor, okay I admit I have a much better relationship with her nurse Sharon, while having her own medical problems never seems to not have enough time to be encouraging and I love her for it.
I am wondering how many of you out there in cyberspace have the same relationship. We plan our visits with an almost religious fever, what we are going to say and not say (and somehow the not going to say becomes the most important) We hope that the doc can read our minds about how we really feel and aren't telling. And sometimes we just want to talk, we want this doctor whose lives we have willingly put in their hands will just put the pen down and listen to us, to read between the lines of our lives and see the real person who is ill, who hurts, who is sad, or have a laugh at something funny that happened, or an accomplishment we had that we couldn't have had last month, or even last year.
I know for myself the scenario of my office visit goes like this, I start the worry about a week before the visit, counting down the days, I plan what I am going to say, what I want, how I want to be treated, how she is doing herself if all is well. The morning of the visit, (I always have my appointments early in the morning) I walk in pay my deductible and in truth never ever wait for more than ten minutes (Now I have jinxed myself
) when called in I chat with Sharon who is always listening and willing to lend a shoulder. The wait in the exam room also is never more than a few minutes my doc walks in quickly goes over her paper of what drugs I've been on and asks me how I am. I get the distinct impression she has so many patients that in truth she doesn't really know me as a person, she knows me as a patient, and then only in what she has gone over from past visits on an exam sheet the few minutes before walking in the door of the exam room and not a living breathing person who is hurting, who is afraid, who is sad. I know that part of it, is most of us, me included put a smile on our faces and tell them that we are doing okay. We don't tell them that over the last two months we have had to have someone come in and take over the care of our grandkids because we hurt so bad. There is to much to go over about pain meds and whether this one will work or whether the paper you have read on the internet has any substance or not. You know that you only have ten minutes to talk to this person because she has taken on numerous new patients that want to get off of pain meds and she is the only doctor in your town that has the new drug that helps people. You are deflated when you get your prescription for more drugs but nothing is settled and you are sent on your way to plan what you are going to say for the next appointment that you know you are never going to say.I am wondering, as I sit here wait for my appointment next week, if maybe having a liaison between the doctor and patient is warranted for pain patients. I would like to have someone that is available to me that I can talk with safely and in confidence about what is going on in my life, how afraid I am in the morning and my legs work a little less, how I don't see the point in being given the same drugs over and over that don't help only to hear that this is what is best for you because I don't believe in some of the drug therapies you have suggested. I would like to have a liaison that can be a go between patient and doctor and maybe this person can see deeper into the patient than the doctor can. I understand that palliative care doctors are these people and in the past have primarily been used for end of life care but have slowly been entering into the area of chronic illness. I would like to know if any of you are using this area of care. I would like to know if anyone thinks that having a liaison between doctor and patient would be a good thing. I think that if a liaison were not present but could convey to doctors what the patient is feeling on a day-to-day or week to week basis when they walk in the exam room door they would be a little more up-to-date on what the patient is going through. To me ten minutes is not enough for a person like myself to get to the bottom of what is going on with me at any given moment. I know that ten minutes is not enough time for me to tell her the pain I'm having, the fear that I am depressed and maybe that is making the pain worse, I want her to listen to what I have to say and I'm sorry, as compassionate as she is ten minutes is just not enough time. So where do you go what do you do? Leave after ten minutes unfulfilled about how you feel but you have that damn script in your hand with chances are a drug that isn't going to help but is her hope will work.
Most of you know who have read my posts know that I have had issues with pain meds good and bad over the years have learned to never ever self medicate no matter how bad the pain is even when the though of taking a couple of extra pills might help you through the day, but are terrified of doing so for past reasons and for the fear of being branded a drug addict. I have been on morphine 15mg 3x4 times per day that doesn't help at all. I have had to have people come in to watch my grandkids a number of times over the last couple of months because the pain has been so bad I can't move, yet when I call to make an appointment to see my doctor before my set appointment I find that I can't make an appointment until after my set appointment. I realize that docs have to make a living and they have to see patients but shouldn't they keep their new patients (her new patients appointment calendar is out past October to me that is crazy and wrong) I realize that maybe there isn't enough doctors for the amount of patients but what is one to do? Decrease the care current patients receive for new patients who deserve also the utmost time and care? I am sitting here weaning myself off of my pain meds because I don't see the point of injuring my body with drugs when they don't help, I'm down to two tablets a day and will be off by the time I have my appointment, which will ultimately lead to taking drugs again because the pain is so bad. To me it is a cycle that is never-ending give up, get more of the same drugs but maybe a little stronger, give up again and on and on with nothing ever changing because you can't talk, the doc has her own beliefs and has no time.
Is there a way that we as a people can tell our doctors that we come first without hurting the people that are patiently waiting for their appointments? How do you slow a doctor down and tell Medicare, insurance companies that my patients come first and if it takes more than ten minutes than it takes more than ten minutes. How do you get a medical establishment to listen to patients needs that new doctors need to learn to slow down and listen to their patients to teach them how to try and read between the lines or catch key words a patient says that maybe this patient needs more time or more care than they can give, that maybe this patient might need a different doctor, or maybe the patient and doctor are not a good fit and the new doctor can refer him/her to a new doctor with no hard feelings on either side. How to we teach a society and I am mostly talking to people my own age who were taught to believe that doctors were demi-gods and knew everything that what they said or did was always right and for the best, how do we teach these people, myself included, that doctors are people too and they don't always know the answer, don't always know that their patients need more time. How do we teach a society that is petrified of their doctors to speak up and say this is what I need and what I want or you are fired? Especially now when pain doctors or all doctors for that matter can red flag a patient for speaking up? It exemplifies the fear patients have of talking with their doctors. How many would be more honest if they didn't have that fear also floating over their heads especially when they live in a semi small town?
I don't know the answers I just know that I am one of those people, that I talk tough on paper but in a face to face appointment everything I feel, think, or believe goes out the window. I know that part of the reason is fear, fear of being called an addict, fear of feeling helpless in the face of this disease and knowing that there is nothing to be done and everything I do is just treading water waiting for the inevitable to happen so in truth what is the point of seeing a doctor in the first place other than to listen to me and help me believe that life is not hopelessness but has openings we may not know of, and fear of hurting the doctors feelings.
That is why I am suggesting a liaison between doctor and patient who can be that voice for the patient. Someone who can be present when the doctors go over their patients that can sit at that round table and say I've talked with this person and this is how she/he is feeling, maybe no suggestions just information. Or maybe chronic illness people can find a palliative care doctor who can be the liaison, or is the pain doctor supposed to be the palliative care doctor? I don't know.
I hope I can get others opinions on this whether for good or bad, I know that there are people out there that have the same feelings I have. Let’s hear from them and get this rolling or tell me that I am crazy and way out of line.
Vickie
