[mcwriter]

Here's one for you...

My husband and I were discussing how family & friends & even some medical personnel react to what pain meds he is on, (which are hefty). This is a real sore spot with me as a spouse/caregiver because once they hear what he is taking and the dosage they immediately judge out of sheer ignorance and suddenly that is all they think about, so much for any further conversation with them!

When you are in true pain, you don't get high because the med is doing what it is suppose to do and they can't understand that. You run into people who say, "Oh, I was on that for my blank,blank,blank (at some laughable dosage) and it was really hard to get off of it." like the are an authority on the subject.

On occassion, even at the ER, the first things out of ER doctor's mouth is, "Do you want to go on a withdrawal program?" before they've even examined him!

Grrrrrrrrrrrr!

We have learned not to even discuss medications if at all possible with family or friends. If it is discussed, we just call them 'pain meds' and that is sufficient. No sense in opening a can of worms. Of course then you have to listen to their stories about their meds and my husband and I look at each other and just smile----(which actually means, "On three, we're heading for the door."

[AussieBrad]

My wife and I find we get similiar reactions when they ask what pain meds I am taking..
I take them for the pain and certainly not because I am addicted!!!

[mcwriter]

There ya go.

I have family members who don't get my husband's condition at all, even though I have decribed it a million times. Goes in one ear and out the other and we're sick of repeating it. Funny, how they always try to relate with their own stories. I guess it's all they think they have to talk about.

My philosphy now is....Just Don't Go There....keep it all very general.

If they don't want to educate themselves, it's their problem.

[qbounce]

Hey, people see a wheelchair and they talk about the 2 months that they were in one. It's a matter of approach. I don't mind when they're trying to relate to some degree. I simply explain the bowel and bladder routine and see how the relation grows cold really fast.-jk

Peoples discomfort to approach someone in a WC is some what offset if they believe there's some commonality with which to share. I don't mind really, if it gives them some fuel to walk over to me and say hello, I'll gladly accept.

Your example with regards to doctors and medical staff in general sometimes leaves me completely speechless . . . . and THAT's saying something!!! I've had my fair share of Dumb-Ass doctors. Keep yourself informed, and if whatever you're doing is working, leave it alone. If it isn't working for you, get another doctor!

[mcwriter]

qbounce, on 22 August 2010 - 05:44 PM, said:

Hey, people see a wheelchair and they talk about the 2 months that they were in one. It's a matter of approach. I don't mind when they're trying to relate to some degree. I simply explain the bowel and bladder routine and see how the relation grows cold really fast.-jk

Peoples discomfort to approach someone in a WC is some what offset if they believe there's some commonality with which to share. I don't mind really, if it gives them some fuel to walk over to me and say hello, I'll gladly accept.

Your example with regards to doctors and medical staff in general sometimes leaves me completely speechless . . . . and THAT's saying something!!! I've had my fair share of Dumb-Ass doctors. Keep yourself informed, and if whatever you're doing is working, leave it alone. If it isn't working for you, get another doctor!

Yeah, I know! But you also have to know that my husband can walk a little, but on that trip to the ER we were in a rush and obviously I just got him in the van and then at the hospital got him into one of THEIR wheelchairs---which was probably my mistake! Because when we got him into a room they just left us and I expected help to get him onto the bed---gosh they do it all the time (paycheck?). Anyway, when the doctor did come in with my husband's chart in hand, mind you, She told him to get over onto the bed.

(I could just picture my elbow thrusting up under her jaw, sending her head flying---wishful thinking and I digress)

I informed her that he couldn't and insisted that she help me get him onto the bed. Well she begrudgingly did help little 5'4" me and my 6'2" husband, so I suppose I should give her that since she didn't call someone else in to help.
Of course then, to add insult to injury, is when she asked about the withdrawal thing before she did anything or read anything.

Maybe I should do a vent thread--hahaha!

Well, that was one of our past episodes and I've learned a few things. But one thing I still hate, no matter what medical people we come across, is the fact that you can tell they don't read a medical history when they're holding it right in front of them, they don't read the two of three pages they might flip through and they can't seem to keep in their heads anything you've told them verbally for more than a few minutes.

[tyvin]

Let it go and live how you both need to. Chronic pain sufferers have had to experience the brunt of false information and beliefs for centuries. These false notions and ideas are fueled by junkies that doctor shop and lie to get the drugs to sell or feed their own habits. That's where much of the stigma comes from lately with docs. The docs are afraid to help any chronic pain person because the feds are breathing down their necks in an effort to curb docs writing scripts for pain meds because of the growing problem with illegal pain Rx usage.

I was doing a hospice case a few years back and the older women who was dying was in extreme pain. The family had the medical right to term her medical treatment and when it was suggested that the women go on pain meds for comfort due to the horrible pain she had the family refused. The family told me they didn't want their mother addicted to drugs or turn into a junkie. It was one of the toughest cases I've ever worked. That poor women died in pain due to the fact the family had acquired false information concerning pain management and even watching their own mother writhe in pain would not change their minds. The moral here is people are going to believe what they want.

When Oxycontin came out it was a God send. The med is excellent for long term pain management but you see what has happened to it and now almost every doc I know won't prescribe it. Be thankful you have a doc that will be an advocate for your pain management needs and don't bother with other peoples outdated and unsubstantiated beliefs. Do what you need to do to stay whole.

[mellowgator]

unless you are lucky and live near a spinal rehab like craig or sheppard you are going to cross the normal run of the mill doctors who only read about and don't know the ins and outs of sci. it's frustrating that you have to be the one to tell the dr.s how to care for you or your loved one. arming yourself with knowledge is the only way to get through the ins and outs of clueless dr.s. often they know nothing about ad or other issues that sci deal with exclusively. i for one make sure i talk with anethesiologists at length about ad and other concerns before i do any routine procedures. it just comes with the territory. i never assume they know what to do because often times they don't.

mellowgator

[mcwriter]

mellowgator, on 22 August 2010 - 09:34 PM, said:

unless you are lucky and live near a spinal rehab like craig or sheppard you are going to cross the normal run of the mill doctors who only read about and don't know the ins and outs of sci. it's frustrating that you have to be the one to tell the dr.s how to care for you or your loved one. arming yourself with knowledge is the only way to get through the ins and outs of clueless dr.s. often they know nothing about ad or other issues that sci deal with exclusively. i for one make sure i talk with anethesiologists at length about ad and other concerns before i do any routine procedures. it just comes with the territory. i never assume they know what to do because often times they don't.

mellowgator

Lesson learned. You are so right.

[qbounce]

I hear you about the doctors not reading the papers you took so much time to fill out. I get the feeling, that even if they did read it, it doesn't explain everything they need to know regarding my condition. I guess I've just gotten used to the questions that seem a little off to me, but it's merely because I used to assume or expect to much from doctors right off the bat.

[jenny407]

mcwriter,
that's a whole long chapter, doctors and meds. I can quite feel with you. Now I'm shy to start talking about our own experience because, in fact, my husband just had a motorbike accident years ago with no grave consequences in the end. And about my SCI friend, I don't know. I met him a long time after his accident, and he doesn't have much pain now.

Still, in a more general way: Of course, your husband has to take the meds that he needs. And no, doctors cannot always relate. In a certain situation, a friend of mine (a surgeon) said (in a tone of utter surprise): "You know, we are always told: 'Listen to the patient. The patient is always right.' " Aha? Really? I must add that this (female) friend is a dedicated doctor. Still - she somehow feels the patient doesn't really know what's happening. She has to remind herself that perhaps he / she does.

You are quite right to go your own way. And yes: keeping informed and not shying away from discussions with doctors (polite, friendly, but firm discussions) has always been my own policy.

I wish you better experiences and competent doctors! And pain meds that work ...

Jenny

[mcwriter]

We have found through trial & error that many medical people are just not educated in pain, it is it's own discipline of study which many do not have in their repertoires. When you can find one with an understanding of it, you hang on to those few if you can.

[LovingSister]

Wow this is a subject that is a sore spot to me. I am on pain meds and have been for 11 years due to a shattered shoulder from a bicycle accident. I feel that the medication I take is personal, as personal as my non existent sex life LOL. People are all experts and think you need to get off them ASAP, there are always comments. The comments make me feel like a drug addict, you know the street kind. I hate trying to explain and I eventually realized I don't have to. And yes, I am am addicted after so many years but if they help does that really matter in the long run? The real problem is they don't work much on pain anymore like they used to

[mcwriter]

LovingSister, on 24 August 2010 - 07:30 PM, said:

Wow this is a subject that is a sore spot to me. I am on pain meds and have been for 11 years due to a shattered shoulder from a bicycle accident. I feel that the medication I take is personal, as personal as my non existent sex life LOL. People are all experts and think you need to get off them ASAP, there are always comments. The comments make me feel like a drug addict, you know the street kind. I hate trying to explain and I eventually realized I don't have to. And yes, I am am addicted after so many years but if they help does that really matter in the long run? The real problem is they don't work much on pain anymore like they used to

Have you thought of trying a different med for your pain? Sometimes your body gets so used to one that something new that works a bit differently can sometimes work better.

We just call them "meds" and add the word 'pain' only if needed, to those regular people to avoid those comments. Good for you that you figured out that you don't have to explain. Too much information just boggles their minds:)

[Teresa52662]

Ok, I have read all the post on here and am trying to be open minded and educated. I have been with my man 7 years. He has been in a chair 26. He is on alot of heavy medication. I don't have anything to do with the meds, don't know how many he takes when. But I would estimate he sleeps about 18-20 hours a day. We can't ever plan anything or rarely go out because I don't know if he's going to be zonked out or not. Is this not a little extreme? I tell him that life is passing him by while he's asleep and it really is. Should I just not mention it and feel it's ok or necessary to take this amount of meds?

[mellowgator]

Teresa52662, on 01 September 2010 - 10:09 PM, said:

Ok, I have read all the post on here and am trying to be open minded and educated. I have been with my man 7 years. He has been in a chair 26. He is on alot of heavy medication. I don't have anything to do with the meds, don't know how many he takes when. But I would estimate he sleeps about 18-20 hours a day. We can't ever plan anything or rarely go out because I don't know if he's going to be zonked out or not. Is this not a little extreme? I tell him that life is passing him by while he's asleep and it really is. Should I just not mention it and feel it's ok or necessary to take this amount of meds?

not knowing the situation what you described does seem extreme. the main thing i look at with regards to my meds is if i can function on them. i have 2 daughters and a sick mother and a home to run. sleeping away the day due to pain isn't an option. there are meds that work that enable you to function. i wouldn't think by what you described that your man has found the correct dosage of his meds yet. i would think he would want a better quality of life. i would talk to him about it and see if he agrees.

mellowgator

[Snakeye]

mellowgator, on 22 August 2010 - 09:34 PM, said:

unless you are lucky and live near a spinal rehab like craig or sheppard you are going to cross the normal run of the mill doctors who only read about and don't know the ins and outs of sci. it's frustrating that you have to be the one to tell the dr.s how to care for you or your loved one. arming yourself with knowledge is the only way to get through the ins and outs of clueless dr.s. often they know nothing about ad or other issues that sci deal with exclusively. i for one make sure i talk with anethesiologists at length about ad and other concerns before i do any routine procedures. it just comes with the territory. i never assume they know what to do because often times they don't.

mellowgator

Hell Gator, the PA I've seeing at the VA for a year doesn't know the diference between an incomplete and complete SCI....The docter before him was nearly as ignorant..Don't they teach sci at med school?...Weird..

[mellowgator]

Snakeye, on 02 September 2010 - 12:09 AM, said:

mellowgator, on 22 August 2010 - 09:34 PM, said:

unless you are lucky and live near a spinal rehab like craig or sheppard you are going to cross the normal run of the mill doctors who only read about and don't know the ins and outs of sci. it's frustrating that you have to be the one to tell the dr.s how to care for you or your loved one. arming yourself with knowledge is the only way to get through the ins and outs of clueless dr.s. often they know nothing about ad or other issues that sci deal with exclusively. i for one make sure i talk with anethesiologists at length about ad and other concerns before i do any routine procedures. it just comes with the territory. i never assume they know what to do because often times they don't.

mellowgator

Hell Gator, the PA I've seeing at the VA for a year doesn't know the diference between an incomplete and complete SCI....The docter before him was nearly as ignorant..Don't they teach sci at med school?...Weird..

i have no idea what they are teaching in med school now a days. there is so much new in medicine that if the doctor isn't trained especially for something they don't know it. so many people really think doctors know it all when they really don't. you would think the va would have a clue about sci since so many soldier suffer this.

mellowgator

[Teresa52662]

mellowgator, on 01 September 2010 - 11:11 PM, said:

Teresa52662, on 01 September 2010 - 10:09 PM, said:

Ok, I have read all the post on here and am trying to be open minded and educated. I have been with my man 7 years. He has been in a chair 26. He is on alot of heavy medication. I don't have anything to do with the meds, don't know how many he takes when. But I would estimate he sleeps about 18-20 hours a day. We can't ever plan anything or rarely go out because I don't know if he's going to be zonked out or not. Is this not a little extreme? I tell him that life is passing him by while he's asleep and it really is. Should I just not mention it and feel it's ok or necessary to take this amount of meds?

not knowing the situation what you described does seem extreme. the main thing i look at with regards to my meds is if i can function on them. i have 2 daughters and a sick mother and a home to run. sleeping away the day due to pain isn't an option. there are meds that work that enable you to function. i wouldn't think by what you described that your man has found the correct dosage of his meds yet. i would think he would want a better quality of life. i would talk to him about it and see if he agrees.

mellowgator

Thanks. I'll try.

[RaginTurtleHead]

TIME magazine recently did a large piece on pain med addictions. There is a lot of talk on the subject right now. The full article is not available on line yet, but if you have a way of getting ahold of last weeks issue its a good read. Here is a link to part of the story

Time Magazine

In the US there should soon be widespread changes in how pain meds are regulated. I dont know if this will be a good thing or a bad thing....

[Jok]

We only allow people with the highest academic results to become doctors, occupational therapists, physiotharepist etc.
I'm afaraid this does not mean they make good professionals.
Most of them are stupid when it comes to common sense.