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 happend, or an accomplishment we had that we couldn't have had last month, or even last year.
I know for myself the scenerio 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 berfore 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 laison 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 laison 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 help but have slowly been moving into the area of chronic illness. I would like to know if any of you are using this area of care.
Vickie
This is an outstanding and well thought out sharepost. I too am very interested in others input here.
I have really spent a great deal of time and energy on trying to figure out how to create this bond & trusting relationship with doctors. When I took my pain mgt classes from my pain clinic. They instructed us to create a good relationship with our doctors, but what they did not teach us, is How to do that.
We spend about 10-15 minutes a month with these doctors and how a person can create a trust & bond with this doctor is such a hard task. Especially when a doctor truely seems to avoid getting anything personal going at all.
I've disucussed this with both my pain doc and my primary care and told them how I feel about it, how difficult it is and neither of them really gave me any clue as to what I should be doing.
About 4 yrs ago was when I first began trying to create this relationship. I gave it a great deal of thought. I knew that in order to get to know someone you have to tell them about your life, some of your values, beliefs and what you wanted to continue to strive for in life even with pain.
I don't know if you or I have ever talked about it, but I begain keeping a pain diary. When I am preparing for a doctors visit, whether it's with my PC or PM doc. I will make sure that my diary is thoroughly filled in with pain levels 3X per day. All my activities, meds, extra exercise and also my rest times or complete down times in severe pain. I then the day or two before will type up a summary of what I've been doing in my life personally and about who I am as a person. I include information about my husband & I's relationship and also what's going on with my son & I's relationship too. How I'm feeling emotionally, Spiritually and if I'm attending church, church functions or if the Home ministry people are coming & Father is coming out to visit me too. The letter is only about a page or two long and my print outs are for them to keep and read later when they have time. Some doctors may not read them and others may think they are non-sense
I can tell my doctors do read mine, because they talk to me about my life issues going on and it helps to bring up further points of discussion. My diary material was actually the reason My pain doctor was allowed to see patterns in my pain & notes that made her have my PC check me for FM and I received the diagnosis.
For many people this may seem like way too much work and work they are not willing to do. Many don't want to spend that much time thinking about their pain and before I began doing this stratagie, I also did not want to put this much time and energy into keeping track of the pain that I hated to begin with. I wanted the doctors to just do all the work and me just to show up and them ask the questions and get this figured out. I was (I felt) in too much pain and way too sick to have to do all this crap to get the proper treatment. What I found out was, that my doctors put as much time & energy into my treatment as I was putting into it. So needless to say, they would prescribe me some meds, but really I was way undertreated and suffering horribly.
While I struck out on the internet and decided to get serious and involved in my own healthcare, treatment, diet, exercise, etc. Both my doctors got much more involved and serious about me as a patient. They both seem to really appreciate and now expect my paperwork all typed up & in a nice file folder to review when I'm gone. I normally ask them to read the summary before they see me, but the diary after I'm gone. So the summary goes to the nurse so she can give it to them.
My last doctors apt was on the 26th of June. I had come in for a review of my pain, meds & also wanted to discuss my dreadful mood swings and the depression I was sinking into. My primary care doctor discussed all this with me for over 45 minutes and never once tried to cut me short or get out of the room. He & I especially can talk over everything including my personal relationship with my family & my private one with my husband.
It's taken alot of work and organization to get to this point with my doctor, but it's really been rewarding & effective. He listens to me and actually when we talked about different meds I might try for my depression, he actually let me get the one I had been wanting to try and that I'd done some research on. My relationship with my pain mgt doc is not quite as good, but she still gives me time to talk to her and go over questions every time I go in to see her. They both treat me with respect and like I'm a person living in pain. I have no doubt in my mind that they both trust me and don't have any fears with how I take & handle my meds. I don't pull any BS with them and I don't take a drop of med extra without their consent. I don't run out of meds early unless they have instructed me to take more or increase my dosage. I feel very comfortable with talking to them both and after several years of working on this, I really feel blessed to have them both.
In between apts I email short summaries to my primary care to let him know how and what I'm doing. If life is rough and my pain has been high, I tell him how badly life Stinks and how I'm struggling. If life has been going pretty well and I've been able to do a few family actiities, I share that with him too. He acts like her appreciates the updates and me keeping in contact. My pain mgt doc has come to a point in our relationship where she trusts me, so unless I have to have some treatment done, she does my check up apts over the telephone. She knows how much pain it causes ride in the car and go out like that, so for all questions and check in's, I just have to make an apt & be home & ready for her call. It's really worked out nicely and I very happy with the care I'm receiving at this point in my illness. It's not always been like this and I've grown to be a firm believer that if you as a patient are willing to put forth the time & effort & make lifestyle changes condusive to your better health & wellbeing. You can get some doctors to work with you.
If anyone is interested in the websites & information that is available to pain patients to create an online diary or print out daily work sheets for a 3 ring binder, I'd be glad to provide links to the sites right here in this discussion. Some doctors may not be as responsive as mine were, but you'll never know until you try.
Great Sharepost Vickie!
Gentel hugs to all
I hope others will find some help in this sharepost
Betty
Great idea on the journal! I did start one several months ago but as you said, pain and simply not caring stopped me but I'm willing to give it a try again. When you started your journal how long did you start before your next appointment? Does that make sense it did in my head :) So send me the links I'd love to TRY and get started!
I don't know if this pain doc would be willing to have me do this and give it to her. Although our time is so short I don't even know how to guage her. I was thinking about it and for some reason shyness comes into my head I wonder if she is as shy as me? Can a person be a doctor and be shy at the same time? Maybe it isn't that she is not interested but isn't sure that by talking to me it would be an intrusion if that makes sense.
I'm willing to try anything, I am at my wits end with doctors and the feeling that I am not being heard or even addressed properly for my pain, fears, saddness, or even my thoughts on how I get by day to day. I thank God for Sharon as she is always there to at least smile and say she understands.
Thanks for liking my sharepost I've been thinking so long on how I feel, what I have gone through and what I have given up on because of pain. I would just like to have the ability to get through the day with my pain under control. But then sometimes I think that my pain levels are getting higher because I am focusing so much on it which in turn makes me more depressed. Aghhhhhhhhhhhhhhhhh a great circle!!!
Hope all is well with you and you are feeling better.
love me