Bictwin
12-24-2006, 03:09 AM
Okay, so let me reintroduce myself...I'm Ashley. 21 years old, with Scheuremanns disease in my back. I had a spine fusion from t10-L1 October 31, 2005. But my pain started 6 years ago. They didn't figure out what it was until 2 years ago. I have been in pain management for like 3 years? Maybe more. My meds are this: 8mg Dilaudid (pain-killer)every 4-6 hours. 10mg Flexeril (muscle relaxant) once before bed. 10 mg Zofran (anti-nausea, mostly used in chemo patients) as needed. Anyways, my family is not very understanding I have an identical twin. I don't know about the rest of you but my family seems to think my pain is exaggerated. My immediate family and other relatives. They ask: Are you still addicted to those pills? You should really stay off those! Weren't you supposed to stop taking those after the surgery? Your pain is not THAT bad! I hate that people, not just people but my family think my pain is in my head. They say I dont need the meds.
So then someone stands up and goes "Gosh my back has been hurting the last 2 days" so i say "Yeah mine hurts too" and they just go O Ash your back always hurts. Exactly my back ALWAYS hurts, but when I complain they say Im overexaggerating. When I dont complain and keep to myself we go to the doctor for a visit and she asks how my back is doing. I say it hurts still, sometimes worse than it usually is. And my mom says no its not hurting that bad..she hasn't complained at all this week...I want to lower her dosage. Now I know I'm 21 but my mom drives with me because sometimes I get shots or something and im too drowsy to drive home.
But its not just my mom when the holidays are here so is everyone else. I dont take my meds in front of anyone, but they still pick on me. Im the person in the family that people are embarrased of, and push to the back and ignore until they feel like picking on someone! UGH!!! Any suggestions?? Let me know! Hope everyone else is doing good. :wave:
So then someone stands up and goes "Gosh my back has been hurting the last 2 days" so i say "Yeah mine hurts too" and they just go O Ash your back always hurts. Exactly my back ALWAYS hurts, but when I complain they say Im overexaggerating. When I dont complain and keep to myself we go to the doctor for a visit and she asks how my back is doing. I say it hurts still, sometimes worse than it usually is. And my mom says no its not hurting that bad..she hasn't complained at all this week...I want to lower her dosage. Now I know I'm 21 but my mom drives with me because sometimes I get shots or something and im too drowsy to drive home.
But its not just my mom when the holidays are here so is everyone else. I dont take my meds in front of anyone, but they still pick on me. Im the person in the family that people are embarrased of, and push to the back and ignore until they feel like picking on someone! UGH!!! Any suggestions?? Let me know! Hope everyone else is doing good. :wave:
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djemcee
12-24-2006, 04:21 AM
Ashley,
I can not imagine being in your shoes. That is so very sad. Why would your own family be so harsh. It's obvious that you have an illness, and its obvious that you are under a doctors care. I think your pain and problems should be between you and your doctor only. It's fine to have mom drive you to the doctor, but in no circumstance should she come into the room and answer questions directed to you on your behalf. If I was your doctor, I would ask you mom to leave the room (politely of course). I think you should contact your doctor when no one is around and ask the doctor to do exactly that if mom starts to even but in when you go. If asking mom to wait in the waiting room doesn't work, then your own doc can step in and say "mom, do you mind stepping out into the waiting room while I talk to your daughter". That is the very first thing to do on your list.
Secondly, you are to never bring up your pain schedule to your family. If they can not be of some support, then they need not be in on the cure. If they ask how is the pain pills going and are you still taking those things, I would reply with "that is a personal matter I rather not discuss at this time" That will end it right there. Just always say exactly that!! If they keep asking keep saying the same thing.
I am lucky to have had a very supportive family from the time I became very ill at age 18. I have been through a heck of alot and they have been there to help me through everything that has ever happened.
I wish better luck for you. Try these steps and see if they work.
Merry Christmas
California Chris:wave:
I can not imagine being in your shoes. That is so very sad. Why would your own family be so harsh. It's obvious that you have an illness, and its obvious that you are under a doctors care. I think your pain and problems should be between you and your doctor only. It's fine to have mom drive you to the doctor, but in no circumstance should she come into the room and answer questions directed to you on your behalf. If I was your doctor, I would ask you mom to leave the room (politely of course). I think you should contact your doctor when no one is around and ask the doctor to do exactly that if mom starts to even but in when you go. If asking mom to wait in the waiting room doesn't work, then your own doc can step in and say "mom, do you mind stepping out into the waiting room while I talk to your daughter". That is the very first thing to do on your list.
Secondly, you are to never bring up your pain schedule to your family. If they can not be of some support, then they need not be in on the cure. If they ask how is the pain pills going and are you still taking those things, I would reply with "that is a personal matter I rather not discuss at this time" That will end it right there. Just always say exactly that!! If they keep asking keep saying the same thing.
I am lucky to have had a very supportive family from the time I became very ill at age 18. I have been through a heck of alot and they have been there to help me through everything that has ever happened.
I wish better luck for you. Try these steps and see if they work.
Merry Christmas
California Chris:wave:
ozzybug
12-24-2006, 11:46 AM
Ashley-
I truly feel for you sweetie. I have people, even family members, who just don't understand. And many of us say this over and over, but I'll say it again, here goes...
People who don't live with long term, daily, chronic pain do not understand at all. They can't begin to imagine how much pain we function with on a daily basis. They don't realize that we have "adapted" if you will, to living with constant pain, therefore we have basically forced ourselves to act as if things are ok...we smile and laugh, we spend time with family, we go to work, we just function because we have to. We have become used to "hiding" most of the pain mostly because we don't want people making the comments that are made to us and behind our backs. I mean, just because we don't complain, doesn't mean we don't hurt.
I don't know what the answer to fixing this problem is other than having those people who make such comments live for one day with our pain so they might better understand, but we all know that isn't possible. I do know that the pain we feel on a daily basis would make most people climb the walls!
You are an adult, and regarless of what others say or think, you have to do what is right for you. If they can't understand that, or aren't willing to at least try and be more understanding of it, then they should just keep their comments to themselves- period. Don't speak of something you know nothing about.
If they ask, do as DJ suggested and simply tell them you don't wish to discuss the matter. If they get upset about that, it's their problem. Sometimes you are darned if you do, and darned if you don't.
Please take care and try and enjoy your holidays sweetie. We are all here to help support you. :wave:
I truly feel for you sweetie. I have people, even family members, who just don't understand. And many of us say this over and over, but I'll say it again, here goes...
People who don't live with long term, daily, chronic pain do not understand at all. They can't begin to imagine how much pain we function with on a daily basis. They don't realize that we have "adapted" if you will, to living with constant pain, therefore we have basically forced ourselves to act as if things are ok...we smile and laugh, we spend time with family, we go to work, we just function because we have to. We have become used to "hiding" most of the pain mostly because we don't want people making the comments that are made to us and behind our backs. I mean, just because we don't complain, doesn't mean we don't hurt.
I don't know what the answer to fixing this problem is other than having those people who make such comments live for one day with our pain so they might better understand, but we all know that isn't possible. I do know that the pain we feel on a daily basis would make most people climb the walls!
You are an adult, and regarless of what others say or think, you have to do what is right for you. If they can't understand that, or aren't willing to at least try and be more understanding of it, then they should just keep their comments to themselves- period. Don't speak of something you know nothing about.
If they ask, do as DJ suggested and simply tell them you don't wish to discuss the matter. If they get upset about that, it's their problem. Sometimes you are darned if you do, and darned if you don't.
Please take care and try and enjoy your holidays sweetie. We are all here to help support you. :wave:
erfan
12-24-2006, 01:29 PM
Your family needs to know the difference between addiction and dependence.
All CP'ers on opiate therapy become dependent. That means that if the meds are stopped abruptly, we suffer withdrawal.
That is NOT addiction. Addiction is a social disease. Addicts don't adhere to the docs directions, they take the med for the high, not for pain relief. They doctor shop and buy meds on the streets.
The rule of thumb is that if the meds improve the quality of your life and allow you to live a fairly normal life, then you are ok.
If the meds ruin the quality of your life and you lose your job, money, home and spouse, then you are addicted.
Good Luck. Also, as noted, keep your med schedule to yourself. No need to be disrespectful and say it is none of your business, but tell them that you'd prefer not to tell them.
Alan
All CP'ers on opiate therapy become dependent. That means that if the meds are stopped abruptly, we suffer withdrawal.
That is NOT addiction. Addiction is a social disease. Addicts don't adhere to the docs directions, they take the med for the high, not for pain relief. They doctor shop and buy meds on the streets.
The rule of thumb is that if the meds improve the quality of your life and allow you to live a fairly normal life, then you are ok.
If the meds ruin the quality of your life and you lose your job, money, home and spouse, then you are addicted.
Good Luck. Also, as noted, keep your med schedule to yourself. No need to be disrespectful and say it is none of your business, but tell them that you'd prefer not to tell them.
Alan
conductor
12-24-2006, 07:47 PM
Dear Bictwin,
Since invoking violence on family members and close friends doesn't really go along with the spirit of the season, I suppose we have to resort to some of the more practical advice given!
Seriously...Djemcee offered SUPERIOR advice that was supported by the others! I add my own "Amen" to the support. Your time with your doctor is yours and yours alone! Plus, I've learned to keep my whole pain situation as quiet as I can. I have family members who have expressed a serious lack of understanding (and I've had a family member steal medication from me).
So, the best thing to do is VENT RIGHT HERE!! THAT'S WHY WE'RE HERE!! We support you wholeheartedly, and we believe you!
Take care, Ashley. You are a young PM patient, and your age--unfortunately--will probably be a factor for many people for a while.
Sincerely,
Jon (Conductor)
Since invoking violence on family members and close friends doesn't really go along with the spirit of the season, I suppose we have to resort to some of the more practical advice given!
Seriously...Djemcee offered SUPERIOR advice that was supported by the others! I add my own "Amen" to the support. Your time with your doctor is yours and yours alone! Plus, I've learned to keep my whole pain situation as quiet as I can. I have family members who have expressed a serious lack of understanding (and I've had a family member steal medication from me).
So, the best thing to do is VENT RIGHT HERE!! THAT'S WHY WE'RE HERE!! We support you wholeheartedly, and we believe you!
Take care, Ashley. You are a young PM patient, and your age--unfortunately--will probably be a factor for many people for a while.
Sincerely,
Jon (Conductor)
IZZY'SMOM
12-24-2006, 08:10 PM
Hi Ashley~
I echo all of the wonderful advice above.
Also, not to be harsh, but your mother may need to find another hobby other than to be Ashleys mediator. Id be just livid. She needs to drive you if need be, and thats it. Shes keeping you dependent on her so she can be in control. You are the one living with pain, and with a vaild reason under pain management.
I cannot imagine how you must feel. My thoughts will be with you this holiday season. Hang in there~:wave:
xoxoxoxo
IZZY'SMOM
I echo all of the wonderful advice above.
Also, not to be harsh, but your mother may need to find another hobby other than to be Ashleys mediator. Id be just livid. She needs to drive you if need be, and thats it. Shes keeping you dependent on her so she can be in control. You are the one living with pain, and with a vaild reason under pain management.
I cannot imagine how you must feel. My thoughts will be with you this holiday season. Hang in there~:wave:
xoxoxoxo
IZZY'SMOM
Bictwin
12-25-2006, 03:16 AM
Wow thanks guys! This all really helps. A lot of people have told me I need to stand up to my family. I tend to let them walk all over me because I'm polite. With friends I will stop them if they do things like that, but family is family. But you're all right! I'm tired of having my medical problems or pain and meds be family business. I mean it gets brought up in the middle of Thanksgiving making me feel so bad i left halfway through and took my food to my room! On the day where we're supposed to be with family and give thanks for what we have! I will use your advice immediately..and you gave this to me just in time for Christmas dinner.
This is why I love this board! Everyone has gone throough these things and can give me advice on what to do. I can't explain all the feelings I have while I'm writing and reading these posts. I feel accepted and understood...something NO ONE else in my family or friends can or will do. Thanks so much! You just made my night! Tonight I will be praying, hoping and dreaming for as much of a pain free Christmas and Holidays as possible for me and everyone else! Thanks again for making me feel so normal!
Love Ashley :angel:
This is why I love this board! Everyone has gone throough these things and can give me advice on what to do. I can't explain all the feelings I have while I'm writing and reading these posts. I feel accepted and understood...something NO ONE else in my family or friends can or will do. Thanks so much! You just made my night! Tonight I will be praying, hoping and dreaming for as much of a pain free Christmas and Holidays as possible for me and everyone else! Thanks again for making me feel so normal!
Love Ashley :angel:
IZZY'SMOM
12-26-2006, 06:41 PM
Let us know how things work out Ashley:wave: :wave:
IZZ'YSMOM
IZZ'YSMOM
ozzybug
12-27-2006, 10:01 AM
Ashley-
I was just thinking about you sweetie. How were your holdiays with the family? I hope you had a wonderful time. Drop us a line and let us know how things went!!
Take Care-
Ozzybug
I was just thinking about you sweetie. How were your holdiays with the family? I hope you had a wonderful time. Drop us a line and let us know how things went!!
Take Care-
Ozzybug
goalsOF2007
12-27-2006, 07:27 PM
Just to keep it short. I was in a very serious automobile accident some years ago. Which led to prescription pain meds, prescribed by medical doctor. Immediate family along side distant, could in no possible way begin to understand why i would not "Just Stop" taking the medication for pain. I honestly concluded there was mental abuse (which it was) which has dampend my confidence. Also have a form of depression. Which indirectly formed due to statments from family members combined with close friends.
Truly hope in the near future folks open up to the situation.
Truly hope in the near future folks open up to the situation.
yvette777
12-28-2006, 08:01 AM
I know exactly how you feel. My mom had to go with me twice to doctors apt's one was neurosurgeon the other pain management. She actually said to the doctor, can't you get her off these vicodin. I wanted to kill her. Luckily the doctor's both said to her, what else can we do except try to help her ease the pain?
I repeatedly have talked to my friends and family about how much the pain is etc. haven't worked in almost a year. So they are clear to what's going on. Last month I went to the hospital to see my friends baby who was just born, hoping that would lift my spirits. Well when i got there, I couldn't walk. My back affects my leg. I was in tears and by the time I made it to the room, with assistance, two of my best friends, say what is wrong with you? Why can't you walk. I wanted to scream at the top of my lungs.....is anyone listening to me...how can you not know? Everyone else goes on with there day to day lives...we don't.Then they get a minor back pain (like you were talking about) Thats the only time anyone really acts concerned. Oh my god my back hurts so bad, how do you live like this everyday. And they are better in a day or so. Its frustrating.
I could vent on and on about this. Sorry!!!
I repeatedly have talked to my friends and family about how much the pain is etc. haven't worked in almost a year. So they are clear to what's going on. Last month I went to the hospital to see my friends baby who was just born, hoping that would lift my spirits. Well when i got there, I couldn't walk. My back affects my leg. I was in tears and by the time I made it to the room, with assistance, two of my best friends, say what is wrong with you? Why can't you walk. I wanted to scream at the top of my lungs.....is anyone listening to me...how can you not know? Everyone else goes on with there day to day lives...we don't.Then they get a minor back pain (like you were talking about) Thats the only time anyone really acts concerned. Oh my god my back hurts so bad, how do you live like this everyday. And they are better in a day or so. Its frustrating.
I could vent on and on about this. Sorry!!!
shoeshoppingal
01-09-2007, 12:45 AM
Oh Ash--I was so hoping that the surgery would have helped you. I am so sorry that you are still in so much pain. I hope you remember me!!!!! If it helps your mental state at all, I completely understand how you feel. You use it as an excuse whenever you don't want to do something. Honey, I have heard it all. Many times. It is so horrible when the people that are supposed to love you and support you the most don't have the sympathy and support that you so desperatly need. Constant pain takes such a horrific mental and emotional toll on you that you have to have people to lean on and when you feel like you can't lean on your family it takes an even larger toll. The only reason i got through my surgery was that my best friend put his life on hold to take care of me when my mother could not even be bothered. She came up for my surgery because she felt like she had to and the only other time i saw my parents was the weekend after my surgery when they came up because my doc wanted them there for my follow up. After that i didn't see them until Christmas when my brother took pity on me and drove a round trip of 8 hours to come to ABQ and take me home. AND I had to take an unbelievable amount of guilt when I told them I couldn't come down for Thanksgiving because I hadn't been cleared to drive yet. I wasn't doing enough to make myself better--i would feel better if I would just admit that I didn't need the pain meds and stopped taking them. I understand how you are feeling honey--just remember that everyone here knows how you are feeling and what you are going through--you always have a friend in me--we are almost back surgery twins having had surgery just weeks apart!!!!!
--Charity
--Charity
babyboomer6
01-09-2007, 09:55 AM
I agree 100% with the others, You have to deal with this one day at a time. And its hard enough, without having hurtful things being said! You keep it simple as you can. A good Dr. will tell you wheather or not your doing somthing wrong. We have rights as chronic pain patients. Having said all this, believe me, I think we all go through it at some time or another. GOOD LUCK SWEETY! Your quality of life is very important !! babyboomer6