15 replies to this topic

[mcwriter]

Okay, so it's near the end of the month and time to get the Rx's refilled...it's a bit ugly around here this morning.

It's never a simple task since I have to pick up hard copies for Class 2 Rx's of my husbands' pain meds at the doctor's office. It isn't simple because no matter how many days I call ahead for them to get these ready, almost every single time I arrive, I have to wait an untold amount of time for the nurse to nab the doctor for his signature between his other patients. I cannot count the times over the years where some simple mistake in how they are written has caused me to have to go back for re-writes, and go through the same waiting process again to get new ones. But, that is beside the point.

Then I go to a pharmacy near there which happens to be the only pharmacy in the city who consistently has in-stock the particular Rx's my husband needs every time I go in. Problem is, this oddball pharmacy is usually very busy and a major pain too. If you wait for your order it is anywhere from a half hour to 5 hours, and they absolutely cannot be anymore precise than that. (It is not like going to Walgreens and when they say 20 minutes, it's 20 minutes!) I found out that if you do not stay there and wait, live-and-in-the-flesh, they delay filling your Rx's until they have served all the people who are waiting in the store first.

Funny how when you've been sitting there wating for two hours, only one are two people are present after they call a good 15 names!!! Seriously, I've counted.

I put up with the oddball pharmacy because I've played Pharmacy Roulette for too many years trying to locate one pharmacy that actually has both meds in stock or two different stores because they each only have one or the other. You play on the phone, zig-zag drive all over, and I don't need all that headache on top of this migraine of trying to accomplish this feat.

Now add to this scenario....

I already know I will have to wait at the doctor's office, a = Dr. office time
+ And the Pharmacy, b = Pharmacy time
+ Van needs repair, borrowing son's vehicle, must coordinate somehow with son's school/work schedule, c = Son's Schedule time
+ My job, covering for someone's vacation, as well as extra work projects that must be done this week, d = My job, Unknown variable

Now add those up and multiply your answer by my husband's urgency, let's say 10, and then multiply that by 3 for how many times you have to re-explain this to him. Okay, that was saying it nicely.

All the stuff listed above is not new. Obviously, I have survived getting all of these and other variables worked out in one way or another. It's rough. I hate it, but I can sort of prepare myself to face this one critical day a month where I pretty much cannot plan to do anything else, nomatter what, until this accomplished.

What I cannot prepare myself for is dealing with my husband when I know his pain level is making him blurt out the irrational. When pain level heightens, that is the only thing he can focus on and he just cannot think clearly or remember anything I've just tried to explain, like the Dr.'s office said to come in at 2pm and nothing my husband says will make them change the time. I get that. It is a time when the less said by me, the better. I'm not the one in excruciating pain, but I am the one still able to think rationally.

For instance, during this last month, he had a pretty rough one with pain, mind you and a couple of different times he took an extra pill to finally get breakthrough. Whenever he considers doing this I caution him, remind him that he does not want to run out too early because it would cause all kinds of problems not only with the doctor, but the pharmacy & insurance company. We have lived with those days of no more pain meds because he either ran out early or the doctor made a mistake writing Rx's right before the weekend and we had to wait until Monday for re-writes. It is hell. I have been to this hell with my husband lots of times. I never want to go to this hell ever again if I can help it.

So I have noticed a slight trend in the last few months and that is that I have been getting his meds filled the day before they run out and now he has started taking them the day I get them. This has caused such an argument today that I just had to step away from it and actually try NOT to hear his voice, because it did not matter what was said by either of us nomatter how many times.

It is pointless to try to talk to him when he is in such pain. It is pointless to try to make him see:

-that he did this to himself, taking a couple of pills early, knowing full well he would run out a day early, and
-I cannot produce his meds out of thin air,
-I cannot make every possible person involved in the process of this do what I want, when I want,
-I cannot make the entire world stop and bow down to what he wants to happen

I took a deep breath and made a conscious effort to bite my lips together. I had been trying to talk sense & reality to a person who could not or would not grasp it. Sometimes the distinction is very unclear.

Pain does that, it can do things to a person and you'd never know it, it is sneaky that way. Sure, there are the obvious effects on behavior. I think it takes long periods of close observance to realize the difference between conversing with the person or conversing with the pain and even then, it is so subtle that it still can make one wonder.

We are all guilty at one time or another of not being able to understand another person's pain. When it is not currently happening to us, we cannot completely relate, because we don't physically feel it. We can anguish as we see someone in pain and try to do everything in our power to relief it or at least some of it, but still, we are not the ones feeling it. When someone in pain is having a better day and not showing their pain as much or at all, we forget that it is there because we cannot feel it with them. We have no idea how many times they have put on the smile in order to hide their pain for our benefit.

The ones in pain cannot express the depths of their pain, they have no way to communicate to us the duration of their pain and the fact that they can never escape it, and they cannot express their fear that their pain will never end or worsen, because we cannot share these physicalities through words, we cannot feel what is felt just by seeing someone experience it. Pain is as unique to every individual, everyone has different tolerence levels for pain, what is a bump to one may be as extreme as wishing for death in another, it truly is that varied.

I offer a caution to caregivers out there...

...to remember who it is that you are speaking to when misunderstandings come up, when you don't get someone else's behavior, when someone else seems obstinate, if they are distant, if they get downright mean & nasty, if they seem to ignore your feelings, if they are irrational, if they are too quiet, etc.....

Are you talking to the person or or you talking to the Pain?

I say this because it makes a difference if you know this. It makes a difference whether you remember your own experiences with pain. It makes a difference in how you respond to their behavior. It makes a difference in what you choose to say back or whether you choose to say anything at all. And it makes a difference with how you feel about yourself and how you see the person you care for.

Sometimes you have to realize when whatever you say isn't making a difference and sometimes you have to just shut up and let them get things off their chest. You cannot listen of you've got your own mouth going.

Knowing that your enemy is Pain and not the person, can help you to strategize against it, and not each other.

Edited by mcwriter, 27 June 2011 - 05:30 PM.

[edlee]

As you have stated, Mc,,, pain is subjective. No one can feel mine,, nor am I in a position to judge theirs, I probably should leave it at that,,, but I find myself unable to do that. I, myself, have a level of pain that makes me seek answers in as many places as I can. I find myself becoming short with my loved ones, too. I wonder, at times, if the effort to continue the battle is really worth it. Here it comes.

BUT,,,,, I refuse to be owned by narcotics. I have been offered some rather strong medications, by a number of the different physitians I have been to see hoping for some therapy that would give me some relief,,, Something I've learned in the last four years of this, is that taking them is as bad as not. I find that when I do take them,, the pain is actually harder to take when I stop,,, and stop I do,, because I can't live that way. I have learned that tolerance for pain is a learned thing. One will increase their tolerance for a specific pain, from experiencing it. It's not like it isn't there,,,, it always is,,, but,, with a great deal of effort,, I have found that I can,,, ( i don't know if this word gets across my real meaning),,, ignore the pain for short periods. Sometimes by positioning,, sometimes by concentration,,, I often used meditative breathing techniques.

Please understand me,, for I do not in any way wish to come off as demeaning toward you or your husband. These ways I have described have helped to keep me away from the medications you have described. They certainly don't keep me pain free. What they do is allow me to keep my mind clear. What you describe of your husbands attitude when he has run out of his drugs,, sounds a great deal like withdrawal symptoms. I choose not to go that way,,, as my family is too important to me for me to allow myself to treat them like that.

It's not the pain talking,,,,, it's his attitude talking. I'm not saying it's easy,,, because it isn't,,, and it will mean his being willing to go through a lot of bad days,,,, But,, it may be time to step back from the opiates.

Again,,, I haven't written this to offend. It's just that I have seen in your descriptions of him,, things I saw in myself,,, I didn't like them in me,,, I doubt he likes them either.
ed

Edited by edlee, 27 June 2011 - 08:20 PM.

[Snakeye]

edlee, on 27 June 2011 - 08:18 PM, said:

As you have stated, Mc,,, pain is subjective. No one can feel mine,, nor am I in a position to judge theirs, I probably should leave it at that,,, but I find myself unable to do that. I, myself, have a level of pain that makes me seek answers in as many places as I can. I find myself becoming short with my loved ones, too. I wonder, at times, if the effort to continue the battle is really worth it. Here it comes.

BUT,,,,, I refuse to be owned by narcotics. I have been offered some rather strong medications, by a number of the different physitians I have been to see hoping for some therapy that would give me some relief,,, Something I've learned in the last four years of this, is that taking them is as bad as not. I find that when I do take them,, the pain is actually harder to take when I stop,,, and stop I do,, because I can't live that way. I have learned that tolerance for pain is a learned thing. One will increase their tolerance for a specific pain, from experiencing it. It's not like it isn't there,,,, it always is,,, but,, with a great deal of effort,, I have found that I can,,, ( i don't know if this word gets across my real meaning),,, ignore the pain for short periods. Sometimes by positioning,, sometimes by concentration,,, I often used meditative breathing techniques.

Please understand me,, for I do not in any way wish to come off as demeaning toward you or your husband. These ways I have described have helped to keep me away from the medications you have described. They certainly don't keep me pain free. What they do is allow me to keep my mind clear. What you describe of your husbands attitude when he has run out of his drugs,, sounds a great deal like withdrawal symptoms. I choose not to go that way,,, as my family is too important to me for me to allow myself to treat them like that.

It's not the pain talking,,,,, it's his attitude talking. I'm not saying it's easy,,, because it isn't,,, and it will mean his being willing to go through a lot of bad days,,,, But,, it may be time to step back from the opiates.

Again,,, I haven't written this to offend. It's just that I have seen in your descriptions of him,, things I saw in myself,,, I didn't like them in me,,, I doubt he likes them either.
ed

*Well said Ed...I feel exactly the same...I refuse give my soul to opiates...but the battle rages on...

[Tetracyclone]

Haha, McW! Its that time of the month again!

[mcwriter]

Yes, I see what you mean.

Of course, my husband, formerly in the health field also has the attitude that they have the answers, he understands the chemistry of medications and how they work in the human body down to the cellular level. So of course he rationalizes what he takes, med-wise in this way.
I am of the attitude that meds are a last resort. If you don't absolutely have to, then don't. Find more natural & healthy ways rather than introducing more poison into your body. I don't even like to take a tylenol, then again this also means that I probably could use more vitamins, which I have, but only take very sporadically.

So you see, we are of both extremes and our conversations or griping at each other probably sounds awfully dorky.

After a short break we were able to talk about this together in a much more constructive way and as the day has gone we have even laughed. We try to find middle ground while things are always changing is tricky business.

I suppose that in my frustration, I am trying to understand Pain from the standpoint of not having it. I do not have to deal with Pain like husband's constant battle, therefore it is not a constant in my mind, so I am simply reactive. Maybe the answer is not so much in knowing the actual experience of Pain, as it is with just having a greater awareness of it.

When the weather changes, especially repeatedly over days--when it rains on and off, my husband can act just like this, even though the pain meds have not changed and are at the same level. Same when he tried to do too much the day before. His mind gets to working on all the possibilities of why he feels worse until I say "It rained last night" or "Remember you rode in the car yesterday".

From the carer's standpoint, my hands are tied. I am the one that has to keep her head, the one that has to look at the bigger picture and the one who has to try to keep a vigilent eye on that fine line that separates caring and enabling by knowing the different scenarios or circumstances and contributing factors in which the behavior is occuring. I have to realize these things and not be subject to them myself, or I am acting only from my reactions.

This applies to more than when an argument ensues, it also applies when he seems content, and maybe moreso to that, because that is when I am most off my guard. When things seem hunky-dory, I need to remember that his pain has never stopped. He can smile and laugh and still have tears in his eyes from the pain. He will grit his teeth and do something for someone else's benefit just to make them happy, though he suffers with much more pain for days afterwards.

And this is what this thread is about. People can feel very alone dealing with their own pain because it is subjective and no one feels it with them in the exact same way they are feeling it. Sometimes they just feel the need for their pain to be acknowledged even in the smallest of ways.

So I ask anyone who is in severe, constant and chronic pain----

How can I understand, give you what you need, how can I get the intensity of what you are trying to describe to me? How do I not forget that it is there with you with no pause, burning you, stabbing you, sinking it's teeth into you and making you fear more of it? How do give to you the kind of compassion that eases you? What is it that you need me to express to you to acknowledge your pain?

For those of you in pain, you do what you can to be in some sort of control if it, when you can. You act with love by doing your best to ignore your own pain and put others before your pain.

But for those of us outside of pain...for me...I cannot keep it's existence in my mind. I cannot seem to keep aware of it. My husband says that most people ignore others in pain if they cannot see a bone sticking out and blood gushing. If it is out of sight, then it is out of mind.

So I ask the ones in pain again:

What can I do to be more aware of your pain so that you do not feel alone in your battle? To help you through it? To not forget your pain when I see you smiling and laughing?

I cannot save you from it or make it go away. I cannot understand it completely or even enough.

But, I do want to try.

[qbounce]

What I don't understand is why you need a prescription from the doctor EVERY month.
My doctor writes a prescription up to 3 months out for the heaviest hydrocodone.

And, can't the doctor call it in to the pharmacy?

I just started getting my Rx's from a mail order company called Express Scripts. They take care of the refills for me, and send me a complete 3 month supply in advance.

There are other alternatives out there, and this one has ended up saving me so much time and, believe it or not, money.

[edlee]

Q,, mine would be the same as Mc. Every month's must be a separate perscription, and must be picked up at the office,, no phone calls,, no mail order. I guess Cal. has different regs.

Mc.,,,,, It's not up to you,,,, nor my wife,, to try to carry his/my burden. I know you both feel you should, but keeping you out of it is my,,, and should be his,,, main goal. To choose any other way isn't the pain,, it's the drugs.

Every day that I can make my wife forget about my pain, is a gift to me. The one thing I least want to see in my loved ones eyes is pity. THAT is the pain I could not bear.
ed

[mcwriter]

qbounce, on 27 June 2011 - 10:29 PM, said:

What I don't understand is why you need a prescription from the doctor EVERY month.
My doctor writes a prescription up to 3 months out for the heaviest hydrocodone.

And, can't the doctor call it in to the pharmacy?

I just started getting my Rx's from a mail order company called Express Scripts. They take care of the refills for me, and send me a complete 3 month supply in advance.

There are other alternatives out there, and this one has ended up saving me so much time and, believe it or not, money.

Don't know, maybe it has to do with where we live, the high instance of crime related to these kinds of meds, so there are different rules for them and probably for how many can be dispensed at one time.

I know that in the past when I have had to go to a differnt pharmacy or if the pharmacy has different people working who do not recognize me, and they read the scrips, and consider that he takes both at the same time (one is patches and they are both time-release), they act like they are shocked he is taking so much. But they never think to ask how big a guy he is which also makes a difference, since he is 6'2" and weighs about 245 lbs.

His doctor also monitors him pretty closely due to his other health issues. All his other meds are easy, and they do call in a 3-month supply of those.

Anyway, his pain is getting steadily worse and we are seeing more neurological things being affected. Don't forget to add age into the mix of all of this. Once you hit that certain age, lots of things begin to change.

[ZEN12many]

I can't help with pain (well maybe suggest medical marijuana - it doesn't make pain go away, in my experience, but it does help you tolerate it).

I do want to brag a little about my health plan, though. It is Kaiser Permanente of Northern California. I order my prescriptions on-line and have them mailed to me. I can phone or email my doctor with any concern and, sometimes, I can get a prescription, if warranted, without having to show up in person and answer the same questions. I can look on-line at the results of any lab tests I may have had. I can compare them, on line, with previous tests. If I don't understand something, I can always call my doctor, of course, but I can also hit "help" on my computer and it explains the particular lab test that has me confused.

Kaiser is very big on preventive medical care. So they bug you to get lab tests done when they are overdue and you haven't yet scheduled.

[mcwriter]

edlee, on 27 June 2011 - 10:44 PM, said:

Q,, mine would be the same as Mc. Every month's must be a separate perscription, and must be picked up at the office,, no phone calls,, no mail order. I guess Cal. has different regs.

Mc.,,,,, It's not up to you,,,, nor my wife,, to try to carry his/my burden. I know you both feel you should, but keeping you out of it is my,,, and should be his,,, main goal. To choose any other way isn't the pain,, it's the drugs.

Every day that I can make my wife forget about my pain, is a gift to me. The one thing I least want to see in my loved ones eyes is pity. THAT is the pain I could not bear.
ed

You know ed, I get that and my husband really does the same as you, he wants nothing more than our happiness.

It's not that I am trying to carry the burden, it is that there are times when I find that I have become frustrated about his pain because I have forgotten it....things go along, everyone is happy and then something happens and I suddenly realize that I have actually forgotten his pain and I have come up with expectations that are unreasonable, but I don't realize it until after-the-fact.

Maybe you're right and I am not looking at this correctly or something.

What I was attempting to endeavor into is simply to be a better person. I find it to be a shortcoming in myself to be frustrated about something when I should have known better. And I do that because he has done so well at keeping it out of sight and out of mind. And that is when I come up with unreasonable expectations and I get frustrated because I have forgotten. I hope this makes more sense.

[mcwriter]

ZEN12many, on 27 June 2011 - 10:57 PM, said:

I can't help with pain (well maybe suggest medical marijuana - it doesn't make pain go away, in my experience, but it does help you tolerate it).

I do want to brag a little about my health plan, though. It is Kaiser Permanente of Northern California. I order my prescriptions on-line and have them mailed to me. I can phone or email my doctor with any concern and, sometimes, I can get a prescription, if warranted, without having to show up in person and answer the same questions. I can look on-line at the results of any lab tests I may have had. I can compare them, on line, with previous tests. If I don't understand something, I can always call my doctor, of course, but I can also hit "help" on my computer and it explains the particular lab test that has me confused.

Kaiser is very big on preventive medical care. So they bug you to get lab tests done when they are overdue and you haven't yet scheduled.

My husband did inquire about the medical marijuana, because he read on here what different peope have said about it. His Doctor told him that he would prescribe it if he wanted, but then he would not continue to be his physician any more. So nix on that idea. WE obviously do not live in California.

Of course, my husband used to be a paramedic in Los Angeles and surrounding areas and so we know about Kaiser, they're great! You are lucky to have a health plan with them, so go ahead and brag. (It doesn't hurt much.)

[wheeliebear75]

I'm in So Cal myself; 150 Percocets to last me 3mo (in winter or longer if it's summer time).....I suppose IF I needed more than that he'd have me come in for a full appointment to get to the bottom of why the change & IF he questioned the need he'd just hand me over to pain management, neurology, orthopedics, or all of the above. It (Percocet/Oxycodone) does have to have a hard copy picked up from the Dr.'s office & has several different ways to prevent forgery/changes; there is an area activated by the thumb, if it gets hot (don't EVER leave the script in the car while you grab a bite to eat) the entire paper gets blackened out {to make it harder to use a copier for future scrips}, can't be folded or a black line will appear making it null-in-void, AND the name has to be written/spelled correctly.

As to the additional dynamics PAIN can toss into the family: HOLY !!!
Much like Ed....I do try to "keep a lid on it" so to speak. I know as a caregiver ya'all have a long day made longer by the mere fact that you choose to continue to love US the person despite the physical limitations our bodies put upon us. I try to not be that broken record complaining of issues that have not solution, of whining about sensations of knives/needles/venomous fire ants that aren't actually there. I don't want for my family & friends to roll their eyes because they're sick of hearing it or I'm a downer. My mind wants to be in the middle of EVERYTHING! My mind wants to DO EVERYTHING! I've been given so much assistance that I want to help out WHENEVER I CAN, sometimes even at the cost of wrecking my body for a few days for those few minutes of feeling good about FINALLY being able to be the one lending a hand. But also as Ed said: this pain 24/7 is not a journey I'd WANT my loved-ones 100% privy to.....it's often such a dark scary place I wouldn't want anyone that I love to spend even a minute HERE! THIS Hell is one we do our best to shield you(our loved-ones) from....not to push you away, not to keep you out....it's because the dreams we want to share with you are the kind made of green grassy meadows & wildflowers.

[DannyR]

Well said wheelie. I don't think there is a way for someone who hasn't experienced pain with the knowledge of it not going away to understand it. It's not just the physical but the mental part also. My wife wants to fix everything for me...it's good to know she still loves me but she can't take on everything. I do feel good about fixing a meal or doing laundry...anything to help out. For me sometimes feeling bad for a couple days is worth it. I need to feel like I can still make a difference in this family. Don't know if this helps Criss but I hope you find the answers you are looking for.

[mcwriter]

Thanks for the input, it is very good perspective.

I suppose I got overwhelmed for nothing and got to thinking that maybe I could have been more giving/understanding in some way. Maybe it is also a bit of shock that he is making such an effort for me to be able to do some different things like go back to school in the Fall. He's been making sure that I am getting some longer stretches of time, I think to get me into the groove for when I will be away more during the days.

I've over thought it, I guess and you all have rescued me from myself yet again.

My heartfelt thanks:)

[sh1wn]

I hate all the BS that pain pills cause for me and mom, I hate it when the doctor won't proscribe enough for a month and I have to put my poor mom through the crap of getting the doctor to give me more.

All the problems disabled people have getting what they need because of the crimes and abuse by others!

I would not want anybody to feel my pain or any pain at all.

Your husband is a lucky man and your love for him shows.

[edlee]

wheeliebear75, on 28 June 2011 - 01:51 AM, said:

I'm in So Cal myself; 150 Percocets to last me 3mo (in winter or longer if it's summer time).....I suppose IF I needed more than that he'd have me come in for a full appointment to get to the bottom of why the change & IF he questioned the need he'd just hand me over to pain management, neurology, orthopedics, or all of the above. It (Percocet/Oxycodone) does have to have a hard copy picked up from the Dr.'s office & has several different ways to prevent forgery/changes; there is an area activated by the thumb, if it gets hot (don't EVER leave the script in the car while you grab a bite to eat) the entire paper gets blackened out {to make it harder to use a copier for future scrips}, can't be folded or a black line will appear making it null-in-void, AND the name has to be written/spelled correctly.

As to the additional dynamics PAIN can toss into the family: HOLY !!!
Much like Ed....I do try to "keep a lid on it" so to speak. I know as a caregiver ya'all have a long day made longer by the mere fact that you choose to continue to love US the person despite the physical limitations our bodies put upon us. I try to not be that broken record complaining of issues that have not solution, of whining about sensations of knives/needles/venomous fire ants that aren't actually there. I don't want for my family & friends to roll their eyes because they're sick of hearing it or I'm a downer. My mind wants to be in the middle of EVERYTHING! My mind wants to DO EVERYTHING! I've been given so much assistance that I want to help out WHENEVER I CAN, sometimes even at the cost of wrecking my body for a few days for those few minutes of feeling good about FINALLY being able to be the one lending a hand. But also as Ed said: this pain 24/7 is not a journey I'd WANT my loved-ones 100% privy to.....it's often such a dark scary place I wouldn't want anyone that I love to spend even a minute HERE! THIS Hell is one we do our best to shield you(our loved-ones) from....not to push you away, not to keep you out....it's because the dreams we want to share with you are the kind made of green grassy meadows & wildflowers.

Thanks Bear,,,, I could not have expressed it better.
ed