cmpgirl
04-08-2008, 09:17 PM
Hey everybody:
I know this is similar to the thread about people's misconceptions and we talk about this subject a lot in most of our threads, but thought a subject like this, that affects us all, and so often, deserves an added thread. Especially right now, as it seems so many of us are having difficulty being heard by our practitioners, our pharmacies and in some cases, even our own families.
My husband brought this up this evening. I know it bothers him so much when I have to endure added stress, that could be avoided so easily if people in the medical field and even our friends and families, would just take the time to educate themselves. It made me realize that I have been spoiled for so long, by my amazing PM doctor, that I'd almost forgotten how important it is to stand up for myself and not allow anyone to trample all over my basic rights as a human being.
I really feel that instead of waiting for these people to "get a clue", I have a responsibility to myself and to all CPer's to do my best to educate them.
I almost changed my upcoming appointment with Bob the idiot PA, and then I thought, NO. I need, for my own peace of mind, to let him know how his behavior and attitude during my recent health scare, affected me. I really think I deserve an apology. I know I have to choose my words carefully, but I feel I can make my point, without losing it or being rude. I am just tired of being treated like a second class citizen.
I just thought this thread would be very educational to all of us. We always learn so much from each other. I would love to know how everyone else feels about this. Much love and God Bless to all, cmpgirl
I know this is similar to the thread about people's misconceptions and we talk about this subject a lot in most of our threads, but thought a subject like this, that affects us all, and so often, deserves an added thread. Especially right now, as it seems so many of us are having difficulty being heard by our practitioners, our pharmacies and in some cases, even our own families.
My husband brought this up this evening. I know it bothers him so much when I have to endure added stress, that could be avoided so easily if people in the medical field and even our friends and families, would just take the time to educate themselves. It made me realize that I have been spoiled for so long, by my amazing PM doctor, that I'd almost forgotten how important it is to stand up for myself and not allow anyone to trample all over my basic rights as a human being.
I really feel that instead of waiting for these people to "get a clue", I have a responsibility to myself and to all CPer's to do my best to educate them.
I almost changed my upcoming appointment with Bob the idiot PA, and then I thought, NO. I need, for my own peace of mind, to let him know how his behavior and attitude during my recent health scare, affected me. I really think I deserve an apology. I know I have to choose my words carefully, but I feel I can make my point, without losing it or being rude. I am just tired of being treated like a second class citizen.
I just thought this thread would be very educational to all of us. We always learn so much from each other. I would love to know how everyone else feels about this. Much love and God Bless to all, cmpgirl
Sponsor
sandy0224
04-08-2008, 09:34 PM
I can't stress how much I agree with you. Every person has a right to have their pain managed, period. There should never be any hassle from a DOCTOR most of all, but the pharmacists should keep their well intended mouths shut, and sometimes our own family members need a major education. Sometimes even after explaining things to people they still don't get it.
I've been a major advocate for proper pain management for a while now and am so glad you started this thread. I am lucky and have a great pm doc right now but I do not take him for granted. I fear every month that something will happen and he'll leave the state, or get sick himself, something, then where will I be? It's really hard to be that dependent on one person. When you think about it a pm doc controls your quality of life and they can make it totally miserable or liveable. I know I will never be totally out of pain, but at least I can function somewhat at this level, where before, with no pain meds, I was in the fetal position on the couch all the time.
Anyway, thanks for starting this thread!
Sandy
I've been a major advocate for proper pain management for a while now and am so glad you started this thread. I am lucky and have a great pm doc right now but I do not take him for granted. I fear every month that something will happen and he'll leave the state, or get sick himself, something, then where will I be? It's really hard to be that dependent on one person. When you think about it a pm doc controls your quality of life and they can make it totally miserable or liveable. I know I will never be totally out of pain, but at least I can function somewhat at this level, where before, with no pain meds, I was in the fetal position on the couch all the time.
Anyway, thanks for starting this thread!
Sandy
CAmom4kids
04-08-2008, 09:42 PM
What a great post, cmpgirl. This is my first post here on the PM board, I've posted a little on the Anxiety board, but I wanted to say I understand what you are saying. I have had chronic pain problems with my right knee since 1991, and after years of hoping and praying it would "just go away", I finally had surgery-ACL reconstruction, partial menisectomy, and the medial meniscus tear was "very complex" with lots of stage IV wear in there. The stability is good, but the pain is not! My ortho. surgeon said I will always have problems, (chrondomalacia?sp?) and boy, was he right. My PCP rx's norco 3x a day, and it really is not helping that much at all. But, I'm afraid to speak up! The looks I get from some of the assistants at her office make me feel so upset. My surgery was in Dec. 06, and I have had to get back into physical therapy, hoping that will help a bit. And I don't even want to get started on the whole pharmacy thing. I think we have all had "episodes" with that, for sure. Thanks for your post, you educated me! :)
Arthr Itis
04-08-2008, 10:04 PM
I agree we have to look out for our selves. Like the rest on this board I've had the quack doctors. I'm in a situation now where if my pm decided to be a jerk or whatever and pulled some of the crap that others are going through, I would be in a world of trouble. This guy is in control of a major aspect of my life, my meds. What would I do if he up and cut me off? The withdrawls would be bad enough but then the pain would still be there. If a quack decided to put something in my record to make it look like I was abusing how would I fight it? I guess that's why I try to live life according to Philippians 4:6-7. "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Fred
Fred
TexMom85
04-08-2008, 11:19 PM
Fred,
Great choice of scripture! That expression, "God will never give you more than you can handle," well, some days I joke that I need a judge's ruling. I'm sure we've all been there, in some way or another.
Cmpgirl,
I totally agree with you regarding watching out for ourselves. It's a sad commentary on the medical profession when we run into physicians who don't seem to have our best interests at heart, especially when we're the ones paying their salaries. But don't you think customer service in general reflects this same trend? I mean, I always try to be pleasant to people, whether they are the doctor's staff, pharmacist, Wal-Mart cashier, whatever. When I worked in the corporate world, I often encountered "stinkers," but I would try to "kill 'em with kindness" until I won them over. It usually worked. But I find such rudeness and lack of respect for others so frequently, in all settings, that I just get to feeling that people are downright mean. What ever happened to common courtesy? I guess it must be that the pace of life and stress of keeping up are making people miserable, and they take it out on others.
I have been known to be a "pleaser," so much so that I have often put my own needs so far below those of others that my health has suffered. I have finally learned to speak up for myself a little better (after lots of therapy, not the PT kind!) and it has helped me immensely. But I still shy away from conflict, and that sometimes makes it hard when I have to address a problem with someone.
But like you say, if I don't stand up for myself, I could get trampled! LOL I try to be as informed as possible and courteous, but these days, if I get pushed, I push back!
Thanks for reminding us that we don't have to be our own worst enemy!
PS Welcome, CAmom! :)
Great choice of scripture! That expression, "God will never give you more than you can handle," well, some days I joke that I need a judge's ruling. I'm sure we've all been there, in some way or another.
Cmpgirl,
I totally agree with you regarding watching out for ourselves. It's a sad commentary on the medical profession when we run into physicians who don't seem to have our best interests at heart, especially when we're the ones paying their salaries. But don't you think customer service in general reflects this same trend? I mean, I always try to be pleasant to people, whether they are the doctor's staff, pharmacist, Wal-Mart cashier, whatever. When I worked in the corporate world, I often encountered "stinkers," but I would try to "kill 'em with kindness" until I won them over. It usually worked. But I find such rudeness and lack of respect for others so frequently, in all settings, that I just get to feeling that people are downright mean. What ever happened to common courtesy? I guess it must be that the pace of life and stress of keeping up are making people miserable, and they take it out on others.
I have been known to be a "pleaser," so much so that I have often put my own needs so far below those of others that my health has suffered. I have finally learned to speak up for myself a little better (after lots of therapy, not the PT kind!) and it has helped me immensely. But I still shy away from conflict, and that sometimes makes it hard when I have to address a problem with someone.
But like you say, if I don't stand up for myself, I could get trampled! LOL I try to be as informed as possible and courteous, but these days, if I get pushed, I push back!
Thanks for reminding us that we don't have to be our own worst enemy!
PS Welcome, CAmom! :)
sammyo1
04-09-2008, 08:59 AM
Cmp, good for you, speak up for yourself. you can't go back & get back the time lost due to peoples ignorance. Perhaps you can prevent someone else from going through it.
Fred, Amen. I need to rely more on the power of prayer & less on the power of fear.
I to am a pleaser, just the last couple weeks I have tried to break that pattern somewhat, so how ironic you mentioned it. It has become hazardous to my health, so I made a decison to try to change some. To say my family is having a hard time with it is putting it lightly. I would run myself in the ground to please everyone else around me, & I am paying for it.
I am trying to not give in & I actually have a couple women in the family who are my cheering section. This will carry on to other aspects of my life, being somewhat of a sucker all my life has gotten me no where. People then expect it. I will not let it change the good in me I just won't let others take advantage so much anymore.
You almost have to be your own advocate, nobody cares, if you don't watch out for yourself who will? Everyone is so quick to judge & people lack empathy big time. My parents were good people & more or less tuaght me to try to put myself in someones shoes or hurt someones feelings or was quick to judge think about how that person will feel. That is one of the best things they could have ever taught me. Our society lacks in that big time. Everyone is so quick to judge.
I don't like to be treated without respect especially when I am paying for a service. I started PT & already can feel abit of an attitude from one of the assistants. Right away I thought be careful because there is no way after everything I have been through I will allow a pt assistant to be disrespectful, I can take my business anywhere I choose, I am paying for a service & they are going to give it to me with total respect. I don't want to be there, I am in pain & I don't need any bull from anyone. Been there done that. A few years ago I would have not even thought about saying one word, but not anymore. I live by the saying treat others how you wish to be treated & if someone can't defend theirself such as the poor lady from the post about misconceptions then it is my christian duty to do so.
Sammy
Fred, Amen. I need to rely more on the power of prayer & less on the power of fear.
I to am a pleaser, just the last couple weeks I have tried to break that pattern somewhat, so how ironic you mentioned it. It has become hazardous to my health, so I made a decison to try to change some. To say my family is having a hard time with it is putting it lightly. I would run myself in the ground to please everyone else around me, & I am paying for it.
I am trying to not give in & I actually have a couple women in the family who are my cheering section. This will carry on to other aspects of my life, being somewhat of a sucker all my life has gotten me no where. People then expect it. I will not let it change the good in me I just won't let others take advantage so much anymore.
You almost have to be your own advocate, nobody cares, if you don't watch out for yourself who will? Everyone is so quick to judge & people lack empathy big time. My parents were good people & more or less tuaght me to try to put myself in someones shoes or hurt someones feelings or was quick to judge think about how that person will feel. That is one of the best things they could have ever taught me. Our society lacks in that big time. Everyone is so quick to judge.
I don't like to be treated without respect especially when I am paying for a service. I started PT & already can feel abit of an attitude from one of the assistants. Right away I thought be careful because there is no way after everything I have been through I will allow a pt assistant to be disrespectful, I can take my business anywhere I choose, I am paying for a service & they are going to give it to me with total respect. I don't want to be there, I am in pain & I don't need any bull from anyone. Been there done that. A few years ago I would have not even thought about saying one word, but not anymore. I live by the saying treat others how you wish to be treated & if someone can't defend theirself such as the poor lady from the post about misconceptions then it is my christian duty to do so.
Sammy
zoey1
04-09-2008, 09:23 AM
The bad part is when we are doing poorly it is hard to fight for ourselves that takes energy and lots more time.
Recent experience rhumy couldn't be bothered to drain a knee. Primary made appointment for me with ortho, he drained it said get mri. Well called insurance they needed a script order from doc. Spent a week calling ortho for the script they never sent it in.
While i could of called primary back for script sometimes you just get tired of fighting for what should be standardize care., When offices fall on the job we pay. Sometimes a little sometimes greatly. In this last round do not know who i was madder at first. the rhumy for not doing their job then being sent to the ortho that did give me relief but NOT follow through. To date i still do not have the mri order. I am also to the point of not sure if i will continue with that rummy.
He was #2. My first one's office was so busy it was a 2 hour wait even with appointment and never could get an emergency appointment in .
Recent experience rhumy couldn't be bothered to drain a knee. Primary made appointment for me with ortho, he drained it said get mri. Well called insurance they needed a script order from doc. Spent a week calling ortho for the script they never sent it in.
While i could of called primary back for script sometimes you just get tired of fighting for what should be standardize care., When offices fall on the job we pay. Sometimes a little sometimes greatly. In this last round do not know who i was madder at first. the rhumy for not doing their job then being sent to the ortho that did give me relief but NOT follow through. To date i still do not have the mri order. I am also to the point of not sure if i will continue with that rummy.
He was #2. My first one's office was so busy it was a 2 hour wait even with appointment and never could get an emergency appointment in .
skych
04-09-2008, 10:23 AM
What a great topic!!!
Yes, we certainly do need to be our own advocates.
There has been many many times that I have had to "get fiesty" to make a point about my health and the care being recieved, or there LACK of. Not to mention the people of the medical profession needing to be put in check.
Most recently a CNA that did not do her job while I was in the hospital after my Jan neck surgery. She left me in the bathroom and I had to get back to my bed on my own. Long story short, I had only been out of surgery a half hour when I went to the bathroom. Fianlly got to bed 1 1/2 hours later my pain pump was fixed and working. Needless to say by that point I could not even make complete sentences because the pain was so far off the charts. All that suffering because she did not answer the call button. My mom finally had to go find her.
Anyway I had to tell my doctor(neuro surgeon) he apparently said something about it and she longer works there.
I have a friend who is a nurse on that floor and she was already on the way out, because other patients had complained of her attitude which was also very poor.
Misstreatment and misconceptions comes in so many forms, and from so many sources. Strangers, medical people, friends, family co-workers. Judgements, misconceptions, not listening to the patient or taking them seriously etc. etc. etc......
When I was on workers comp I really learned about being my own advocate. It was an every day thing just to keep them on top of my care. I was not treated very nicely by some of the case workers and it was a tough road.
But by being my own advocate, and standing up for my self and not backing down when I felt that there was still something else wrong with me I eventually got what I needed. BUT we should not feel like we have to fight to get the care and treatment and respect from others that we deserve.
Even at this time I am still very persistent with my PM and my Neuro who I will see on Friday about the continued elevation of pain and 3 month post op check up. I feel the same or worse and they need to get to the source of the problem and if they can't someone else will.
I feel that we as a patient need to actively take part in our health care. I know that it is really tough sometimes but man oh man we are talking about my life and my health. So be persistent for what you feel it is you need.
Christine
Yes, we certainly do need to be our own advocates.
There has been many many times that I have had to "get fiesty" to make a point about my health and the care being recieved, or there LACK of. Not to mention the people of the medical profession needing to be put in check.
Most recently a CNA that did not do her job while I was in the hospital after my Jan neck surgery. She left me in the bathroom and I had to get back to my bed on my own. Long story short, I had only been out of surgery a half hour when I went to the bathroom. Fianlly got to bed 1 1/2 hours later my pain pump was fixed and working. Needless to say by that point I could not even make complete sentences because the pain was so far off the charts. All that suffering because she did not answer the call button. My mom finally had to go find her.
Anyway I had to tell my doctor(neuro surgeon) he apparently said something about it and she longer works there.
I have a friend who is a nurse on that floor and she was already on the way out, because other patients had complained of her attitude which was also very poor.
Misstreatment and misconceptions comes in so many forms, and from so many sources. Strangers, medical people, friends, family co-workers. Judgements, misconceptions, not listening to the patient or taking them seriously etc. etc. etc......
When I was on workers comp I really learned about being my own advocate. It was an every day thing just to keep them on top of my care. I was not treated very nicely by some of the case workers and it was a tough road.
But by being my own advocate, and standing up for my self and not backing down when I felt that there was still something else wrong with me I eventually got what I needed. BUT we should not feel like we have to fight to get the care and treatment and respect from others that we deserve.
Even at this time I am still very persistent with my PM and my Neuro who I will see on Friday about the continued elevation of pain and 3 month post op check up. I feel the same or worse and they need to get to the source of the problem and if they can't someone else will.
I feel that we as a patient need to actively take part in our health care. I know that it is really tough sometimes but man oh man we are talking about my life and my health. So be persistent for what you feel it is you need.
Christine
Executor
04-09-2008, 11:09 AM
I couldn't agree more. With the health system we have in place now, you as the patient must be determined to educate yourself as much as possible. I can honestly say that I've learned as much from my pharmacist and own research as I have my Doc. In most cases, it's the ability to assemble all the pieces of the puzzle together in order to obtain the information you need about your particular condition.
You must also be committed to finding ways to communicate or reach people you need to reach. The people who answer the phone at our Doc's offices are great gatekeepers, and you must know how to successfully communicate with them in order to reach the Doc or his/her nurses.
Ex
You must also be committed to finding ways to communicate or reach people you need to reach. The people who answer the phone at our Doc's offices are great gatekeepers, and you must know how to successfully communicate with them in order to reach the Doc or his/her nurses.
Ex
feelbad
04-09-2008, 12:20 PM
this is kind of what i have been teeling you all along cmp,you DO have to take control over your own healthcare or you get run over by stupid docs who "think" they know everything. what happens over time is you DO start to feel somewhat victimized by your own healthcare system. it sucks to have to do it but we are our own best advocates. getting all your own medical records really does help TONS in getting your own needs met too. you really just need to know what your own docs are actually thinking about your issues or if they are even recognizing them at all in the clinic notes they make after every visit.
i just had such a huge learning experience when our son suddenly and i mean suddenly presented with liver failure. this was a year from absolute hell for us. he was not always getting the right things done or stupid nurses were doing really incredibly stupid things to him. that is when my mommy fangs came out and they heard all about it believe me. the thing is,this really helped ME when my life got turned upside down,already being aware of the ins and outs from just dealing with tons of different specialists. but i KNOW i wouldn't have been able to do as good of a job for ME if i hadn't just HAD TO do it for him first. we take alot of crap from docs and other medical professionals all the time,but when it comes to your child,thats a whole different story. this really prepared me to have to deal with all of my crap,but that was a huge learning experience just because i was forced to go there for my son.
you always have to keep in mind that the docs we are seeing for anything are working for US,not the other way around. they can be fired and you can move on to another doc if you have to in some cases. in your particular case cmp,it is crucial that you remove these idiots at your primary clinic just completley out of your life, and find a more caring group of people to take over your healthcare. what this place has put you thru so far is just appalling. it really would be very interesting to just actually read thru this particular docs clinic notes he made on you after your visits. who knows if he even had a clue as to what YOUR real needs were at all. i do hope you will be getting ALL of your own sets of records hon,believe me,they can make for some very interesting reading.
great thread cmp,really. this is just what we all need to be doing,standing up for ourselves. if you have a problem in doing just that,always bring someone with you to your appts,to give some back up and ask the right questions in case you feel too intimidated at times. it really will help you to learn how to stand up for yourselves if you have problems in that area. you DO have a right to good appropriate healthcare,sometimes we can for get that when we feel just too overwhelmed by the system,or a very intimidating doc or specialist. Marcia
i just had such a huge learning experience when our son suddenly and i mean suddenly presented with liver failure. this was a year from absolute hell for us. he was not always getting the right things done or stupid nurses were doing really incredibly stupid things to him. that is when my mommy fangs came out and they heard all about it believe me. the thing is,this really helped ME when my life got turned upside down,already being aware of the ins and outs from just dealing with tons of different specialists. but i KNOW i wouldn't have been able to do as good of a job for ME if i hadn't just HAD TO do it for him first. we take alot of crap from docs and other medical professionals all the time,but when it comes to your child,thats a whole different story. this really prepared me to have to deal with all of my crap,but that was a huge learning experience just because i was forced to go there for my son.
you always have to keep in mind that the docs we are seeing for anything are working for US,not the other way around. they can be fired and you can move on to another doc if you have to in some cases. in your particular case cmp,it is crucial that you remove these idiots at your primary clinic just completley out of your life, and find a more caring group of people to take over your healthcare. what this place has put you thru so far is just appalling. it really would be very interesting to just actually read thru this particular docs clinic notes he made on you after your visits. who knows if he even had a clue as to what YOUR real needs were at all. i do hope you will be getting ALL of your own sets of records hon,believe me,they can make for some very interesting reading.
great thread cmp,really. this is just what we all need to be doing,standing up for ourselves. if you have a problem in doing just that,always bring someone with you to your appts,to give some back up and ask the right questions in case you feel too intimidated at times. it really will help you to learn how to stand up for yourselves if you have problems in that area. you DO have a right to good appropriate healthcare,sometimes we can for get that when we feel just too overwhelmed by the system,or a very intimidating doc or specialist. Marcia
ddm13
04-09-2008, 12:30 PM
I am so grateful for all the advice. It's funny, my 20 yr. old son is a recovering childhood cancer patient who underwent a bone marrow transplant in 6/97. He still has many physical and mental issues as a result. I have no problem being his advocate. I have no problems talking with his docs and asking questions, making sure he is getting the best of care. But for some reason when it comes to me, I can't speak up. I am not truthful about the pain because I am afraid that they will want to go up on the amount of meds or that they will think that I am an addict if I need more. In the mean time, my life has suffered. I don't want to interact with anyone, I can't exercise like I would like (which makes me gain weight), socially I have cancelled gatherings and I am only able to work one day a week. All I can do is lay down with the heating pad. It takes all my strength to take my son to school or to go to the grocery store and make dinner. I am chronically fatigued (I am sure it is because of the constant pain) and do I have to say extremely depressed. I should get my blood pressure checked, it has been high everytime I have gone to the pain doc. Again, I don't want to have to take another med. I am 44 yrs. old and feel this way, I hate to think what it will be like 64! Aren't you afraid that if your pain doc starts to give you a hard time about your meds that you will be left without? I currently take 2 to 3 norco 10/325 (3 lately...and falling short of meds they only rx #60) skelaxin 2 times per day, Ibuprofen 800 twice a day and now I have to take pepcid AC from the Ibuprofen. That is for pain, I take other meds for anxiety attacks and insomnia.
Chrissy, if you don't mind me asking,what type of neck surgery did you have? I am due for another facet joint injection (that only last two months and costs me $600.00 after insurance) but really can't afford it right now. That too sounds like an excuse when I go to the pain doc because they really want me to get it done instead of giving me pain med. The meds are cheaper. Sorry for the long reply, I am having a hard time lately. Thanks for your help.
Chrissy, if you don't mind me asking,what type of neck surgery did you have? I am due for another facet joint injection (that only last two months and costs me $600.00 after insurance) but really can't afford it right now. That too sounds like an excuse when I go to the pain doc because they really want me to get it done instead of giving me pain med. The meds are cheaper. Sorry for the long reply, I am having a hard time lately. Thanks for your help.
cmpgirl
04-09-2008, 12:45 PM
Thanks for all of the posts everyone. I always used to be a real pain in the butt, when it came to advocating for myself and others. I took care of my mom, who had alzheimer's and also my elderly aunt (mom's sister) for 4 years. I never had a problem demanding appropriate care for either of them.
My aunt, who was in her 80's had fallen and broken both hips, six months apart, and the second one never healed properly after the surgery. I know the nurses on the ortho floor at the hospital would cringe when they saw me step off that elevator!
Even when I first started dealing with CP, I never stopped pushing, till I found my current PM. I went through a few real idiots, before finding him. I really think, because I've been so spoiled by him, that I had just forgotten how to be the pain in the butt that I used to be.
But, it's time to wake up and get myself taken care of. I am just mad enough to do it right now, too. I am going to call a primary that has been recommended to me, today, and set up a time to go in and "interview" him. I will not switch to anyone until I make sure that they will not have a problem with referring me to my PM. Having someone else manage my CP is not an option for me. I worked too hard to find the right PM and I refuse to give that up.
I really appreciate everyone sharing their opinions and supporting me and encouraging me to get the "old me" back in gear. God Bless, cmpgirl
My aunt, who was in her 80's had fallen and broken both hips, six months apart, and the second one never healed properly after the surgery. I know the nurses on the ortho floor at the hospital would cringe when they saw me step off that elevator!
Even when I first started dealing with CP, I never stopped pushing, till I found my current PM. I went through a few real idiots, before finding him. I really think, because I've been so spoiled by him, that I had just forgotten how to be the pain in the butt that I used to be.
But, it's time to wake up and get myself taken care of. I am just mad enough to do it right now, too. I am going to call a primary that has been recommended to me, today, and set up a time to go in and "interview" him. I will not switch to anyone until I make sure that they will not have a problem with referring me to my PM. Having someone else manage my CP is not an option for me. I worked too hard to find the right PM and I refuse to give that up.
I really appreciate everyone sharing their opinions and supporting me and encouraging me to get the "old me" back in gear. God Bless, cmpgirl
CAmom4kids
04-09-2008, 03:07 PM
Thanks, TexMom85! This message board has been so helpful to me...I am very grateful to have found it. And what you say is so true for me, as well. I am also what you would call a "people pleaser", I really try to look at the glass half-full (most of the time, anyways!) and sometimes I am looked at like, "Is she for real?" Another inspiring quote, "Love is patient, love is kind" which is just the begininning of the bible verse, 1 Corinthians, 13:4, is really what I try to live by. With four kids, a little patience and kindness goes a long way. I finally spoke up about some anxiety issues I've been having, which I feel are, in part, related to my pain not being manageable at times, and my doctor prescribed some anti-anxiety medication, 2 mg. valium once a day. Not sure if it's doing much, but I'll try it for now. My mom is also a CP patient, and she has endured some of the most inhumane and rude treatment I have ever seen, and she is 66 years old, for crying out loud. I've had to go to bat for her numerous times, and I will do it again if I have to, but when it comes to advocating for myself, that's a work in progress! So glad to "know" you! ;)
ozzybug
04-09-2008, 03:31 PM
Cmpgirl-
Amen, and Amen to your post. You go girl! I agree with you 100%. We do have to be our own best advocate. Especially when others are making horribly false assumptions about us simply because they can. I've been there, and it hurt me to the core to find out some of the things that were being said about me (by family members) behind my back. I mean, your family is supposed to be a strong support system, and when they aren't there for you, who can you turn to?
So many of us have had to deal with being treated badly by other people, and even "medical professionals" who should know better.
I think this goes to further prove that chronic pain is still so terribly misunderstood. This is a HUGE problem for those of us who live with it. It's really sad that in this day and age people just really know nothing about it. Maybe one day there will be more understanding and even more- some kind of advocacy group for us???!!??
Amen, and Amen to your post. You go girl! I agree with you 100%. We do have to be our own best advocate. Especially when others are making horribly false assumptions about us simply because they can. I've been there, and it hurt me to the core to find out some of the things that were being said about me (by family members) behind my back. I mean, your family is supposed to be a strong support system, and when they aren't there for you, who can you turn to?
So many of us have had to deal with being treated badly by other people, and even "medical professionals" who should know better.
I think this goes to further prove that chronic pain is still so terribly misunderstood. This is a HUGE problem for those of us who live with it. It's really sad that in this day and age people just really know nothing about it. Maybe one day there will be more understanding and even more- some kind of advocacy group for us???!!??
forginon
04-09-2008, 03:51 PM
cmpgirl,
Great job, as usual.:)
This may well be the most critical of all aspects of our CP lives. It doesn't take a village to raise a CP patient. It just takes one individual - the patient him/her self. If we don't look out for ourselves no one will. And who better to do it anyway.
Like another poster wrote earlier, I rarely report my true pain score to my doc. I think he'd faint if I did. And, like the other poster, I fear that my meds would be raised if I did so, and that's not acceptable to me. They have reached a ceiling I will not exceed. There may be another treatment modality, but no higher doses for me. I know an honest report wouldn't get me labeled wrongly, but it could set-up a negative slide in my care. But why should I fear telling the truth? Really. So what if I'm misunderstood. Maybe there's another treatment option I'm not aware of. I need to take action on this.
It's funny, how we all seem so good at ensuring that our loved ones get good care, even if it means a fight, yet we don't always defend ourselves. I don't let anyone disrespect me, but I do allow others to take advantage of me at times. Not in the big things, but in the little things. And, now that you've posted this it's got me to thinking. I don't want my kids to see this weakness and think that's how we should act around medical staff. I want them to grow up appropriately assertive for both themselves and others.
Thanks so much for this post!:) I am going to make changes right away.
steve
Great job, as usual.:)
This may well be the most critical of all aspects of our CP lives. It doesn't take a village to raise a CP patient. It just takes one individual - the patient him/her self. If we don't look out for ourselves no one will. And who better to do it anyway.
Like another poster wrote earlier, I rarely report my true pain score to my doc. I think he'd faint if I did. And, like the other poster, I fear that my meds would be raised if I did so, and that's not acceptable to me. They have reached a ceiling I will not exceed. There may be another treatment modality, but no higher doses for me. I know an honest report wouldn't get me labeled wrongly, but it could set-up a negative slide in my care. But why should I fear telling the truth? Really. So what if I'm misunderstood. Maybe there's another treatment option I'm not aware of. I need to take action on this.
It's funny, how we all seem so good at ensuring that our loved ones get good care, even if it means a fight, yet we don't always defend ourselves. I don't let anyone disrespect me, but I do allow others to take advantage of me at times. Not in the big things, but in the little things. And, now that you've posted this it's got me to thinking. I don't want my kids to see this weakness and think that's how we should act around medical staff. I want them to grow up appropriately assertive for both themselves and others.
Thanks so much for this post!:) I am going to make changes right away.
steve
Executor
04-10-2008, 04:40 PM
I guess I don't understand why you are willing to live in pain and not report your true pain score. You really do not get appropriate care that way.
Great point Sandy. I think one has to be totally honest with your Doc. They can't help you if they don't have all the information.
Ex
Great point Sandy. I think one has to be totally honest with your Doc. They can't help you if they don't have all the information.
Ex
trowftd3
04-12-2008, 06:40 AM
Yes, yes, yes and yes!!!!:):):);)
Yes to being your own advocate!
Yes, it's hard to do when you're used to being the caregiver!
Yes, we need to remind each other to do this and why we deserve the care we do!
Chrissy, I sooo understand about w/c. I don't know how you did it alone. My hubby was injured three and a half years ago and he wouldn't have made it through the first 6 months if I hadn't been on the phone and in the face of every doctor and case manager. Really, how did you do it??
I was(and am) truly afraid for w/c patients who are more severely injured than my husband.
My own w/c case was mild in comparison but even so....I don't think I stood up for my self as much as I did for him.
And CAmom were you the one who mentioned the daily fear of losing your doctor and such??? (maybe hthis was a different thread...they all kind of run together after awhile.LOL)Yes! Unfortunately, I think most of us experience this on a daily basis.
Welcome to our happy/grumpy/dysfunctional/ but always supportive family!
Take care all and great topic cmpgirl.~Mush
Yes to being your own advocate!
Yes, it's hard to do when you're used to being the caregiver!
Yes, we need to remind each other to do this and why we deserve the care we do!
Chrissy, I sooo understand about w/c. I don't know how you did it alone. My hubby was injured three and a half years ago and he wouldn't have made it through the first 6 months if I hadn't been on the phone and in the face of every doctor and case manager. Really, how did you do it??
I was(and am) truly afraid for w/c patients who are more severely injured than my husband.
My own w/c case was mild in comparison but even so....I don't think I stood up for my self as much as I did for him.
And CAmom were you the one who mentioned the daily fear of losing your doctor and such??? (maybe hthis was a different thread...they all kind of run together after awhile.LOL)Yes! Unfortunately, I think most of us experience this on a daily basis.
Welcome to our happy/grumpy/dysfunctional/ but always supportive family!
Take care all and great topic cmpgirl.~Mush