babs17
08-11-2007, 12:36 AM
I am looking for ways to start to communicate to my loved one's regarding my pain medications, and new routines/lifestyle.
HX:
Oxycontin 40mg 3x/day
Celebrex 200mg 1 in AM
Prevacid 30mg in AM for my stomach
MultiVit every AM
Elavil 200-300mg at night before bed
PRN: Percocet 10mg/325mg 1-4/day
Xanax .25 for Anxiety (aprox 1 pill every 2 weeks)
ALSO>>>>>started Lyrica which I took myself off after 1 week b/c I came down with Shingles and all the new AntiViral meds were getting confusing/rough with side effects. Starting again Monday.
If people can PLEASE bear with me as I try my best in asking 4 Questions...I would be SO appreciative of your valuable input.
1) I am at the 6 months of PM therapy mark now. I have recieved aprox 85 injections of all kinds in my back. My parents are starting to ask why I need to continue with pain medications. My sister does not like when she sees me nap during the day. My young brother asks if I still stake the "strong" meds. I don't know whether to/how to/to whom should I explain myself to?
2) My friends/loved one's see me at infrequent BBQ's/Beach trips/Lunches, they hear about my walking progress to 3 miles (yeahh me), Swimming 30 laps (whoa)....and they all think I will be drug-free, pain free, and back to work very soon. (I wish, and I try and stay very positive in front of people) I don't know if I should or do I even bother explaining that I am still medicated while doing all of these activities, and that PRN's are STILL VERY MUCH needed on a daily basis. Even if I don't move all day....the inactivity hits me harder than the active days...I'm sure some of you know what I mean by that. How do I talk about my current Pain management process, and/or the possibility of long term use of these meds? of the Injections?
3) When should I say "Enough is Enough already" to taking these pills and continuing with "trying this injection and retry this other pill", or "let's try another type of nerve pain pill, change the combination"?
4) LAST ONE...thanks for your patience with these.....The LYRICA, for example, made me feel very high, very tired, and gave me horrible gas as well as increased my appetite. My fantastic Pharmacist said to give it 2 weeks before I fold, and the side effects will taper out. Well, I had to stop prematurely b/c of the Shingles and the confusion, etc...from all the new changes at once. But my parents said, "Listen...we don't think you should be taking all these meds anymore. You seem so tired lately, and your body seems to be 'unhealthy'"....mind you, this is during the 1st week of Shingles and the Lyrica. And I tried to explain that the Lyrica was mostly the cause, the SE were supposed to subside in 2 weeks and the Shingles are b/c of my emotional stress. My parents have continued to use this time period as their sample in our discussions. They are 'convinced' that the last 2 weeks are what they should base their opinions on. Unfortun. my walking increase and swimming success are not being taking into account. This upsets me b/c I've been working so hard this whole summer WITH my meds & Injections, to time them just right so that I can take full advantage of my feeling better time-slot to constantly increase my health. I've gone from being depressed, VERY soft lacking my usual muscles since the surgery in Oct, to a pretty peppy, very toned individual who STILL NEEDS to lose weight majorly...but that is why I've been in Weight watchers now for 5 weeks. Yes, I am still sad at times...I can't help it...my life was great prior to my injury 1.5 yrs ago. It makes me sad from time to time...but there has been ALOT OF ACHEIVEMENT in the last 3 months alone. So, their focusing on my last 2 weeks isn't a very good example....but I can see its only b/c they love me and care. I just don't know how to handle all these trials, and ups & downs, and how to communicate that I'm using the meds as a helpful tool, and may have to even stay on them for quite some time. And its important to me, that I don't want to fool anyone into thinking that I am doing better than I am, but I also don't want people to have any "hush hush discussions" about me & my drug habit. Prior to my injury, I was quite the "good time" girl, and enjoyed beer as a part of my social scene. My friends and i are all successful and would enjoy drinks to relax when we finally had time to get together. They continue with their successess...i have unforn lost my small fortune during this mess, as we as my overall job position. Anyway, I have been declining my favorite drink for the last few times out and I know that my friends are concerned. They all just want me off of any meds, so that I can join them again (without them feeling bad that I'm on the sidelines). And they don't want to talk about their successes while I'm around b/c of my losses. In short, I HAVE CHANGED according to everyone around me...and I don't know how to explain that this "change" is permeant b/c the injury is permenant with only hopeful 'improvements' to be added on.
I hope I explained that to you like I was hoping to.
As I am feeling better and more social, I am seeing more people and I now face these topics with my friends as well as my family. Any input would be valued & recieved with an open mind. :confused:
HX:
Oxycontin 40mg 3x/day
Celebrex 200mg 1 in AM
Prevacid 30mg in AM for my stomach
MultiVit every AM
Elavil 200-300mg at night before bed
PRN: Percocet 10mg/325mg 1-4/day
Xanax .25 for Anxiety (aprox 1 pill every 2 weeks)
ALSO>>>>>started Lyrica which I took myself off after 1 week b/c I came down with Shingles and all the new AntiViral meds were getting confusing/rough with side effects. Starting again Monday.
If people can PLEASE bear with me as I try my best in asking 4 Questions...I would be SO appreciative of your valuable input.
1) I am at the 6 months of PM therapy mark now. I have recieved aprox 85 injections of all kinds in my back. My parents are starting to ask why I need to continue with pain medications. My sister does not like when she sees me nap during the day. My young brother asks if I still stake the "strong" meds. I don't know whether to/how to/to whom should I explain myself to?
2) My friends/loved one's see me at infrequent BBQ's/Beach trips/Lunches, they hear about my walking progress to 3 miles (yeahh me), Swimming 30 laps (whoa)....and they all think I will be drug-free, pain free, and back to work very soon. (I wish, and I try and stay very positive in front of people) I don't know if I should or do I even bother explaining that I am still medicated while doing all of these activities, and that PRN's are STILL VERY MUCH needed on a daily basis. Even if I don't move all day....the inactivity hits me harder than the active days...I'm sure some of you know what I mean by that. How do I talk about my current Pain management process, and/or the possibility of long term use of these meds? of the Injections?
3) When should I say "Enough is Enough already" to taking these pills and continuing with "trying this injection and retry this other pill", or "let's try another type of nerve pain pill, change the combination"?
4) LAST ONE...thanks for your patience with these.....The LYRICA, for example, made me feel very high, very tired, and gave me horrible gas as well as increased my appetite. My fantastic Pharmacist said to give it 2 weeks before I fold, and the side effects will taper out. Well, I had to stop prematurely b/c of the Shingles and the confusion, etc...from all the new changes at once. But my parents said, "Listen...we don't think you should be taking all these meds anymore. You seem so tired lately, and your body seems to be 'unhealthy'"....mind you, this is during the 1st week of Shingles and the Lyrica. And I tried to explain that the Lyrica was mostly the cause, the SE were supposed to subside in 2 weeks and the Shingles are b/c of my emotional stress. My parents have continued to use this time period as their sample in our discussions. They are 'convinced' that the last 2 weeks are what they should base their opinions on. Unfortun. my walking increase and swimming success are not being taking into account. This upsets me b/c I've been working so hard this whole summer WITH my meds & Injections, to time them just right so that I can take full advantage of my feeling better time-slot to constantly increase my health. I've gone from being depressed, VERY soft lacking my usual muscles since the surgery in Oct, to a pretty peppy, very toned individual who STILL NEEDS to lose weight majorly...but that is why I've been in Weight watchers now for 5 weeks. Yes, I am still sad at times...I can't help it...my life was great prior to my injury 1.5 yrs ago. It makes me sad from time to time...but there has been ALOT OF ACHEIVEMENT in the last 3 months alone. So, their focusing on my last 2 weeks isn't a very good example....but I can see its only b/c they love me and care. I just don't know how to handle all these trials, and ups & downs, and how to communicate that I'm using the meds as a helpful tool, and may have to even stay on them for quite some time. And its important to me, that I don't want to fool anyone into thinking that I am doing better than I am, but I also don't want people to have any "hush hush discussions" about me & my drug habit. Prior to my injury, I was quite the "good time" girl, and enjoyed beer as a part of my social scene. My friends and i are all successful and would enjoy drinks to relax when we finally had time to get together. They continue with their successess...i have unforn lost my small fortune during this mess, as we as my overall job position. Anyway, I have been declining my favorite drink for the last few times out and I know that my friends are concerned. They all just want me off of any meds, so that I can join them again (without them feeling bad that I'm on the sidelines). And they don't want to talk about their successes while I'm around b/c of my losses. In short, I HAVE CHANGED according to everyone around me...and I don't know how to explain that this "change" is permeant b/c the injury is permenant with only hopeful 'improvements' to be added on.
I hope I explained that to you like I was hoping to.
As I am feeling better and more social, I am seeing more people and I now face these topics with my friends as well as my family. Any input would be valued & recieved with an open mind. :confused:
Sponsor
LottyLiz
08-11-2007, 09:35 AM
You poor thing!! I have a lot of support and I'm not sure what I would do without it.
But, I feel I must say this to you. You are doing very, very well. It is no ones business (including your family if they are acting this way) what medicines you take. The progress you have made is incredible and I'm sorry that they are using the shingles episode as a ruler in their quest to get you off medications.
When I lived closer to my parents, my dad was like this. He wanted me off all medications and couldn't understand why I didn't just suck it up like he did when he's in pain. Well, I went to visit them recently and he told me that he was sorry he acted this way. He is having issues with his back and his knee and is on the patch, 50 mcg and Percocet 7.5 mg for breakthrough!!
Could your parents go with you to your doctors appointment, so that they can talk to your doctor and maybe they will be more understanding.
As far as your friends go, I wouldn't discuss it with them at all. Enjoy the times you have with them, but don't let them guilt you into feeling like you should be doing better than what you are. If they love you, they will come around as you improve. And maybe at some point you can let your closest friend(s) know that your injury is permanent and that although your habits have changed (not being able to have a drink, not going out as often) you are still the same person inside.
Also, please, please be careful about discussing your meds with people. You tell someone, they tell someone and next thing you know, your house has been robbed and your meds stolen.
My doctor recently told me about another patient of his who nearly was beaten to death when his house was robbed and all they wanted were his meds. So word to the wise, don't be specific when discussing your meds with anyone outside your family.
Lizzie
But, I feel I must say this to you. You are doing very, very well. It is no ones business (including your family if they are acting this way) what medicines you take. The progress you have made is incredible and I'm sorry that they are using the shingles episode as a ruler in their quest to get you off medications.
When I lived closer to my parents, my dad was like this. He wanted me off all medications and couldn't understand why I didn't just suck it up like he did when he's in pain. Well, I went to visit them recently and he told me that he was sorry he acted this way. He is having issues with his back and his knee and is on the patch, 50 mcg and Percocet 7.5 mg for breakthrough!!
Could your parents go with you to your doctors appointment, so that they can talk to your doctor and maybe they will be more understanding.
As far as your friends go, I wouldn't discuss it with them at all. Enjoy the times you have with them, but don't let them guilt you into feeling like you should be doing better than what you are. If they love you, they will come around as you improve. And maybe at some point you can let your closest friend(s) know that your injury is permanent and that although your habits have changed (not being able to have a drink, not going out as often) you are still the same person inside.
Also, please, please be careful about discussing your meds with people. You tell someone, they tell someone and next thing you know, your house has been robbed and your meds stolen.
My doctor recently told me about another patient of his who nearly was beaten to death when his house was robbed and all they wanted were his meds. So word to the wise, don't be specific when discussing your meds with anyone outside your family.
Lizzie
sammyo1
08-11-2007, 11:31 PM
babs17, my gosh, people do tend to get hung up on the negative instead of looking at your achievements. If indeed you trust your Doctor and he feels you are doing what needs to be done then so be it, I find myself quoting this alot lately but "walk a mile in my shoes" people, even those we love sometimes dont understand, So talk to your doc. if you are concerned about taking any meds, and as suggested in last reply maybe your parents should go with you if possable, but keep in mind you have nothing to prove to anyone( I struggle there to) & those who really care should understand(easy to say, I know), as for as your friends go ,just went through some of that, I can't and won't drink on these meds, so not real popular right now, but on spinal colunm post is a thread "do any of you experiance this with your friends....) take alook, it may help you. Your active and that is amazing when you have pain, so don't discuss your meds,(unless someone you really trust) & do the best you can, Like that song says Find out who your friends are, huh. Tell your family you are just doing the best you can, so you can give the best of yourself to those around you, Good Luck, & know you are not alone. Sammy
butrfligirl28
08-12-2007, 10:34 AM
I agree with the others that it is really no ones buisness what meds you take; narcotic or otherwise. I see so many people feel like they have to "fess up" because they are on these meds. But that's just it, these are medications. You wouldn't go to all of your family and friends and discuss your prescription profile. There is no reason why they need to know what you take for pain, or for any other ailment. As far as people not understanding, I am sorry to say that there are some people that will never get it. They are blessed with a life free of chronic pain, and good for them. But that's not what works for you, and that's okay. You should not feel like you have to defend what you and your doctor have decided is best for you.
I do have a concern however with all the injections you are receiving. The injections themselves can cause scar tissue, the break down of otherwise healhy joints, ect. Why are they doing so many?? Besides the obvious fact that they make alot of $$$$. I have a friend in pain management and she will do whatever procedure the doctors ask her to. Now she has MORE problems that when she started! Not to mention the fact that at 34 years old, her insurance policy is close to her LIFETIME maximum because the procedures are $10, 000 a pop. Please be careful. If they help, great. But you should still only get so many per year. I would be very hesitant to have many more if these.
Also, an anti-depressant such as Cymbalta may help you reduce these meds. It's working so well for me, I dis-continued my as needed anxiety medication all together. I also am experiencing less irritability, stress, and body pain. Just something to think about. I hope you feel better soon!
Amanda
I do have a concern however with all the injections you are receiving. The injections themselves can cause scar tissue, the break down of otherwise healhy joints, ect. Why are they doing so many?? Besides the obvious fact that they make alot of $$$$. I have a friend in pain management and she will do whatever procedure the doctors ask her to. Now she has MORE problems that when she started! Not to mention the fact that at 34 years old, her insurance policy is close to her LIFETIME maximum because the procedures are $10, 000 a pop. Please be careful. If they help, great. But you should still only get so many per year. I would be very hesitant to have many more if these.
Also, an anti-depressant such as Cymbalta may help you reduce these meds. It's working so well for me, I dis-continued my as needed anxiety medication all together. I also am experiencing less irritability, stress, and body pain. Just something to think about. I hope you feel better soon!
Amanda
babs17
08-12-2007, 12:39 PM
I did not know that about the injections. darn. how did I not think of that! Scar tissue....Ummm...I might take a hiatus from all these interventions for a bit. thanks. I'll ask my MD, of course.
LifeLost
08-14-2007, 09:25 AM
Thank you so much for responding to my posts!!:) It really is amazing, I started out this night just feeling horribly depressed, but reading that people know and care really makes an impact. Your words meant alot to me too!! Oh, and I don't mind answering anything, ask away !! You made my night !! You are my new friend !!
Don't do anything because someone else thinks you should, do it because you do. Do what you need to. Don't feel bad about it. Sometimes my mom can get a little like that. I really wish you wer'nt on those meds, do you really need those, can't you do a little more, etc. I try to make it clear to her that I don't enjoy the meds, but i enjoy the activites I get to do with her that they make possible. Like I always try to remember, only you know your body, only you know your pain, and only you know what you need to do to endure!! You don't have to explain yourself to anyone. It sounds like you are progressing pretty well. I understand what you mean about keeping up trying all these things, sometimes you just want to give up. I'm willing to try new things that ar'nt to drastic, and if the research supports it. You never know theres new stuff out there every day.
I kinda asked a question similar about how to talk about pain, and who to talk about it with - "what do you say when someone asks how you are". It really is difficult, I wish there was an easy answer, its different for everyone. People have given some interesting answers. I say unless you feel like you want them to understand (even though unless they go through it they really can't) you need'nt explain it much at all. If you want them to have a glimpse into your reality, it's hard to get it across. Let them ask about what they want to know, let them lead the conversation, if they really want to know tell them. Though I'm obviously no expert on these discussions about pain, I still hav'nt figured it out myself. Just be open to their questions I guess. Try to use terms and examples they can understand like - you know when you ______how much it hurt, while it's kinda like that for me except ______, try to use what they may have experienced to explain what is happening with you and why you need the meds. And be honest with your family about what they can expect from you and what you expect from them. I don't know what I'm really talking about anymore, so I'll go.
Anyway, thanks again!
Don't do anything because someone else thinks you should, do it because you do. Do what you need to. Don't feel bad about it. Sometimes my mom can get a little like that. I really wish you wer'nt on those meds, do you really need those, can't you do a little more, etc. I try to make it clear to her that I don't enjoy the meds, but i enjoy the activites I get to do with her that they make possible. Like I always try to remember, only you know your body, only you know your pain, and only you know what you need to do to endure!! You don't have to explain yourself to anyone. It sounds like you are progressing pretty well. I understand what you mean about keeping up trying all these things, sometimes you just want to give up. I'm willing to try new things that ar'nt to drastic, and if the research supports it. You never know theres new stuff out there every day.
I kinda asked a question similar about how to talk about pain, and who to talk about it with - "what do you say when someone asks how you are". It really is difficult, I wish there was an easy answer, its different for everyone. People have given some interesting answers. I say unless you feel like you want them to understand (even though unless they go through it they really can't) you need'nt explain it much at all. If you want them to have a glimpse into your reality, it's hard to get it across. Let them ask about what they want to know, let them lead the conversation, if they really want to know tell them. Though I'm obviously no expert on these discussions about pain, I still hav'nt figured it out myself. Just be open to their questions I guess. Try to use terms and examples they can understand like - you know when you ______how much it hurt, while it's kinda like that for me except ______, try to use what they may have experienced to explain what is happening with you and why you need the meds. And be honest with your family about what they can expect from you and what you expect from them. I don't know what I'm really talking about anymore, so I'll go.
Anyway, thanks again!
ibake&pray
08-14-2007, 01:38 PM
Babs,
You don't mention your age, but I assume that you are (ahem) legal. You need to sit your parents down and tell them much as you appreciate their concern, you are doing the best you can for your life at this point. You are living the best you can and you are sorry that they seem disappointed in you, but you are proud of what you have accomplished this summer...then proceed to click off what you have done. Ask them if they have not noticed this? Tell them that you prefer to live life to the positive not the negative and you are trying to live the best that you know how with the limitations that you have. If that involves taking meds to manage, then so be it, but it is your life, not theirs. You would appreciate their support, not their negativity, to your face or behind your back to your sister or family members....they should be supporting you.
You are doing a great job, keep it up. We have all been there, got the shirt....it ain't fun...
remember life is what YOU make it....so make it good....
You don't mention your age, but I assume that you are (ahem) legal. You need to sit your parents down and tell them much as you appreciate their concern, you are doing the best you can for your life at this point. You are living the best you can and you are sorry that they seem disappointed in you, but you are proud of what you have accomplished this summer...then proceed to click off what you have done. Ask them if they have not noticed this? Tell them that you prefer to live life to the positive not the negative and you are trying to live the best that you know how with the limitations that you have. If that involves taking meds to manage, then so be it, but it is your life, not theirs. You would appreciate their support, not their negativity, to your face or behind your back to your sister or family members....they should be supporting you.
You are doing a great job, keep it up. We have all been there, got the shirt....it ain't fun...
remember life is what YOU make it....so make it good....
whosit
08-14-2007, 03:27 PM
If I were you I would just tell them that if they were in as much pain as you are you would be supportive. I have very good support and could not live without it. Although my parents are the same way and they want me off of all the pain medications and to not take anything. they even went so fqar as to say i am making it up. All I said to them was the MRI's just dont lie, and my doctor went through alot of schooling to know more than they did and he knows what is best for me pain wise then they will ever know. it is no ones business what you take. i agree with asking them to go to the doctor with you and have your doc explain to them why you have to take the medication you do to be pain free. One day they will be in pain though and will need something to take the edge off and they will see that they had no right to tell you what to do. One thing to do is to hav a sit down with them and discuss some goals to be pain medication free. A timeline to TRY and follow. Being pain free does not happen over night and they need to know that it may take years to get there but you will continue to try as long as they help you with physical therapy and with emotional support. Explain to them that there is no way you are going to be pain free if they dont help you and encourage you to be better instead of whining about the pain meds. if all else fails then let them think that you are off of the pain meds and keep it to yourself. You will find something that works for you that wont make you sleep all the time and let you lead a somewhat normal life. Just dont tell them you are on anything if it comes to that. But ask for thier blessing and if they dont want to give it to you then it is not worth having them there becaue it is only going to make things worse. You are already in pain and that is depressing enough, having someone trying to tell you what to do and force you away from the one thing that makes you feel better is only going to make it worse. Just try to hang in there, it does get better! I hope you are able to work things out with your family. You have the support of everyone here because most of us are going through the same thing. there is is very good ppl here in this forum and I would be lost without it!
Wvrecon432
Wvrecon432