WHAT DID YOU DO

[EnergyGal]

I never rebelled with my CF. I was deathly afraid of it so I felt the fear and it drove me to take better care of myself. I would just tell her that taking her enzymes will help prevent her from getting lung and sinus infections. The more she absorbs her food the stronger her immune system will be.

Maybe you can print out articles about enzymes and therapy?
Just tell her like it is. Staying denial will cost you years and suffering that can be prevented.

edited to add: I would also say if you want to keep looking pretty you want to take care of your skin. Being healthy on the inside will make your skin glow. Mention as you get older, your body is not as strong so it is important to build a good foundation.

Maybe she does not understand CF like you think she does?

 

[wanderlost]

Well, by the time I was a teen, I had already had a blockage due to not taking enzymes, so i learned that lesson ealry. I did other things - as LouLOU said, I felt old and wise and wanted to grow up fast. This petered out for me at about 17 (beginning of my senoir year). But sophomore and junior years...well...I am not proud of a lot of the things I did.

I can't say anything I did was healhty or a good idea, but I can say, I was a very normal teenaged girl dealing with a serious disease. I smoked, drank - smoking obviously being more detrimental to my health - but I know I had a need to prove that I was no different than anyone else - and if my friends could smoke, then so could I (and thay are all smokers now, asdly - ever single one of them!). Luckily, that little voice my parents planted in my head about how bad smoking would be for me stayed there and I never really took to it - but I think I HAD to experiment.

I became an expert (still am) at stealth enzyme taking, though I am sure more than once I did not take them. I kept little pill cases inside coat pockets and my purse - sometimes I even threw a few in pants pockets. Going to the trestroom right before food comes at a restaurant is a great way to take them - or coughing and then popping them in when you ocver your moth works too. Maybe you could practice this at home? You could see if she could fool her family, kwim?

Hang in there. I am sure she will come around. Just keep telling her the right things to do, it is sinking in, even if she is rebelling against it.

 

[wanderlost]

Well, by the time I was a teen, I had already had a blockage due to not taking enzymes, so i learned that lesson ealry. I did other things - as LouLOU said, I felt old and wise and wanted to grow up fast. This petered out for me at about 17 (beginning of my senoir year). But sophomore and junior years...well...I am not proud of a lot of the things I did.

I can't say anything I did was healhty or a good idea, but I can say, I was a very normal teenaged girl dealing with a serious disease. I smoked, drank - smoking obviously being more detrimental to my health - but I know I had a need to prove that I was no different than anyone else - and if my friends could smoke, then so could I (and thay are all smokers now, asdly - ever single one of them!). Luckily, that little voice my parents planted in my head about how bad smoking would be for me stayed there and I never really took to it - but I think I HAD to experiment.

I became an expert (still am) at stealth enzyme taking, though I am sure more than once I did not take them. I kept little pill cases inside coat pockets and my purse - sometimes I even threw a few in pants pockets. Going to the trestroom right before food comes at a restaurant is a great way to take them - or coughing and then popping them in when you ocver your moth works too. Maybe you could practice this at home? You could see if she could fool her family, kwim?

Hang in there. I am sure she will come around. Just keep telling her the right things to do, it is sinking in, even if she is rebelling against it.

 

[wanderlost]

Well, by the time I was a teen, I had already had a blockage due to not taking enzymes, so i learned that lesson ealry. I did other things - as LouLOU said, I felt old and wise and wanted to grow up fast. This petered out for me at about 17 (beginning of my senoir year). But sophomore and junior years...well...I am not proud of a lot of the things I did.

I can't say anything I did was healhty or a good idea, but I can say, I was a very normal teenaged girl dealing with a serious disease. I smoked, drank - smoking obviously being more detrimental to my health - but I know I had a need to prove that I was no different than anyone else - and if my friends could smoke, then so could I (and thay are all smokers now, asdly - ever single one of them!). Luckily, that little voice my parents planted in my head about how bad smoking would be for me stayed there and I never really took to it - but I think I HAD to experiment.

I became an expert (still am) at stealth enzyme taking, though I am sure more than once I did not take them. I kept little pill cases inside coat pockets and my purse - sometimes I even threw a few in pants pockets. Going to the trestroom right before food comes at a restaurant is a great way to take them - or coughing and then popping them in when you ocver your moth works too. Maybe you could practice this at home? You could see if she could fool her family, kwim?

Hang in there. I am sure she will come around. Just keep telling her the right things to do, it is sinking in, even if she is rebelling against it.

 

[amysmom]

My daughter did the same thing (she's 25 years old now). She was always compliant about doing her treatments but the night before she turned 13, she told me she didn't need to do them anymore and since she was so 'old' now, she would decide for herself when and if she'd do anything. She was going to leave on a 2-week vacation with a friend so I used that as leverage - if you don't do what I know you need to do, you won't be able to go. She still refused. So I took away the vacation and since she was still saying she won't listen to anyone, I had to explain things to her in a different way than I ever had before. I told her that since we were paying for all her medication, treatments and doctor bills, I wasn't willing to continue to do that if she didn't do her part. It was really painful to say that but I knew I wasn't going to get through to her any other way. If she was going to make these radical decisions that we completely disagree with, she would have to start paying for her own treatment. It worked! She hasn't missed a treatment or medication since! The last thing I did, which made a huge difference is I told her (and got the okay from her doctor first) that since she was getting older, she would be talking directly to her doctor about her illness. If she had a problem with doing something, she would have to call her doctor and discuss it with him. I was still in constant contact with him too, of course. This did two things - it made her doctor the bad guy and created a buffer between the two of us to help with the CF stuff and also the typical teenage rebellion. Also, it started her toward taking on the responsibilities of CF, which she was going to have to take on as an adult in a few years. This is a little long, but I hope it helps!

 

[amysmom]

My daughter did the same thing (she's 25 years old now). She was always compliant about doing her treatments but the night before she turned 13, she told me she didn't need to do them anymore and since she was so 'old' now, she would decide for herself when and if she'd do anything. She was going to leave on a 2-week vacation with a friend so I used that as leverage - if you don't do what I know you need to do, you won't be able to go. She still refused. So I took away the vacation and since she was still saying she won't listen to anyone, I had to explain things to her in a different way than I ever had before. I told her that since we were paying for all her medication, treatments and doctor bills, I wasn't willing to continue to do that if she didn't do her part. It was really painful to say that but I knew I wasn't going to get through to her any other way. If she was going to make these radical decisions that we completely disagree with, she would have to start paying for her own treatment. It worked! She hasn't missed a treatment or medication since! The last thing I did, which made a huge difference is I told her (and got the okay from her doctor first) that since she was getting older, she would be talking directly to her doctor about her illness. If she had a problem with doing something, she would have to call her doctor and discuss it with him. I was still in constant contact with him too, of course. This did two things - it made her doctor the bad guy and created a buffer between the two of us to help with the CF stuff and also the typical teenage rebellion. Also, it started her toward taking on the responsibilities of CF, which she was going to have to take on as an adult in a few years. This is a little long, but I hope it helps!

 

[amysmom]

My daughter did the same thing (she's 25 years old now). She was always compliant about doing her treatments but the night before she turned 13, she told me she didn't need to do them anymore and since she was so 'old' now, she would decide for herself when and if she'd do anything. She was going to leave on a 2-week vacation with a friend so I used that as leverage - if you don't do what I know you need to do, you won't be able to go. She still refused. So I took away the vacation and since she was still saying she won't listen to anyone, I had to explain things to her in a different way than I ever had before. I told her that since we were paying for all her medication, treatments and doctor bills, I wasn't willing to continue to do that if she didn't do her part. It was really painful to say that but I knew I wasn't going to get through to her any other way. If she was going to make these radical decisions that we completely disagree with, she would have to start paying for her own treatment. It worked! She hasn't missed a treatment or medication since! The last thing I did, which made a huge difference is I told her (and got the okay from her doctor first) that since she was getting older, she would be talking directly to her doctor about her illness. If she had a problem with doing something, she would have to call her doctor and discuss it with him. I was still in constant contact with him too, of course. This did two things - it made her doctor the bad guy and created a buffer between the two of us to help with the CF stuff and also the typical teenage rebellion. Also, it started her toward taking on the responsibilities of CF, which she was going to have to take on as an adult in a few years. This is a little long, but I hope it helps!

 

[coltsfan715]

I had a similar problem when I was in high school - heck when I was in school in general. I always hated that I had to wait 15 minutes to get my enzymes at the clinic and then cram food into my mouth for 10 -15 min at lunch while everyone else got 30 min to eat. I hated that I had to feel different and MOST of all I HATED that everytime I ate with my mother she asked me if I had taken my medicine. I always said yes even if I hadn't and a part of me refused to take it if she asked about it.

I honestly don't know why - it makes NO sense to me at all why I would do that. As she ALWAYS loved to point out it was hurting me not her. Still I just saw it as her being "right" and kind of know it all-y and I hated that she was pointing out that I forgot AGAIN. Then when I would say to stop reminding me and I will do it- she would remind me anyway and when I said no I hadn't taken them she would just say see - I knew you hadn't taken them if I don't remind you who will.

That kind of thing almost makes you not want to take them in front of the person because you know you need them but if you SHOW them you forgot a lecture is coming.

Funny thing my mom reminded me until about 1 yr ago that I needed to take my pills and I rebelled until about 1 yr ago. I finally told her to just stop or I would never take them again. I told her that I always took them when she was not around - to which she asked Kurt and he agreed that I did always take them when we were out - I told her that her asking all the time for some reason made me not want to take them. She stopped asking and I can maybe count on ONE HAND the number of times I have missed pills at meal times since she stopped asking. Funny thing is the times I have missed pills I haven't even been with her - I have been alone and it has been a case of my pill bottle being empty or having fallen out of my purse so I didn't have any to take- I still remembered them there were just none available.

I would talk to her and ask why she isn't taking them - is it that they make her feel different, they are a nuisance or is it that she is just tired of hearing you nag her about it - not saying that is the case but I KNOW I felt my mom did. Maybe ask her if she would be more likely to take them if you didn't hound her about it all the time - meaning STOP asking everytime she leaves the house " do you have your pills?" or every time she eats "did you take your pills?". If she says it will help then maybe give it a try and see. Give her a smaller pill bottle to carry in her purse that way you never have to ask her if she has her pills they are ALWAYS in her purse. Or agree that you can ask once a week just to make sure that her bottle is full and has enough pills for her.

I personally don't think that talking to the doctor about it will do anything more than be annoying but maybe that is just me. I know that no matter how many times my docs told me I needed to take them I just ignored them basically - I would tune them out completely - just another lecture from an adult. I say just ask her what is going on - NOT in a pissed off parent way just in a curious what do we need to do to make you comfortable taking them way. Let your guard down so she can feel comfy letting her guard down and being open with why she isn't taking them.

Also to add - just because she doesn't take her enzymes all the time does NOT mean she will get a blockage. I don't know how many years went by that I did not take my enzymes regularly and I have NEVER had an intestinal blockage - knock on wood. I am not saying it won't happen just saying that it is not going to definitely happen to her either.

Take Care Seana - one thing I will say is that I was more prone to take my pills in high school if I carried them on my person - in a purse or something rather than going to the clinic everyday. It is much more convenient to handle it on your own than have to deal with the nurse and besides she probably knows more about it than the nurse anyhow.

Take Care,
Lindsey

 

[coltsfan715]

I had a similar problem when I was in high school - heck when I was in school in general. I always hated that I had to wait 15 minutes to get my enzymes at the clinic and then cram food into my mouth for 10 -15 min at lunch while everyone else got 30 min to eat. I hated that I had to feel different and MOST of all I HATED that everytime I ate with my mother she asked me if I had taken my medicine. I always said yes even if I hadn't and a part of me refused to take it if she asked about it.

I honestly don't know why - it makes NO sense to me at all why I would do that. As she ALWAYS loved to point out it was hurting me not her. Still I just saw it as her being "right" and kind of know it all-y and I hated that she was pointing out that I forgot AGAIN. Then when I would say to stop reminding me and I will do it- she would remind me anyway and when I said no I hadn't taken them she would just say see - I knew you hadn't taken them if I don't remind you who will.

That kind of thing almost makes you not want to take them in front of the person because you know you need them but if you SHOW them you forgot a lecture is coming.

Funny thing my mom reminded me until about 1 yr ago that I needed to take my pills and I rebelled until about 1 yr ago. I finally told her to just stop or I would never take them again. I told her that I always took them when she was not around - to which she asked Kurt and he agreed that I did always take them when we were out - I told her that her asking all the time for some reason made me not want to take them. She stopped asking and I can maybe count on ONE HAND the number of times I have missed pills at meal times since she stopped asking. Funny thing is the times I have missed pills I haven't even been with her - I have been alone and it has been a case of my pill bottle being empty or having fallen out of my purse so I didn't have any to take- I still remembered them there were just none available.

I would talk to her and ask why she isn't taking them - is it that they make her feel different, they are a nuisance or is it that she is just tired of hearing you nag her about it - not saying that is the case but I KNOW I felt my mom did. Maybe ask her if she would be more likely to take them if you didn't hound her about it all the time - meaning STOP asking everytime she leaves the house " do you have your pills?" or every time she eats "did you take your pills?". If she says it will help then maybe give it a try and see. Give her a smaller pill bottle to carry in her purse that way you never have to ask her if she has her pills they are ALWAYS in her purse. Or agree that you can ask once a week just to make sure that her bottle is full and has enough pills for her.

I personally don't think that talking to the doctor about it will do anything more than be annoying but maybe that is just me. I know that no matter how many times my docs told me I needed to take them I just ignored them basically - I would tune them out completely - just another lecture from an adult. I say just ask her what is going on - NOT in a pissed off parent way just in a curious what do we need to do to make you comfortable taking them way. Let your guard down so she can feel comfy letting her guard down and being open with why she isn't taking them.

Also to add - just because she doesn't take her enzymes all the time does NOT mean she will get a blockage. I don't know how many years went by that I did not take my enzymes regularly and I have NEVER had an intestinal blockage - knock on wood. I am not saying it won't happen just saying that it is not going to definitely happen to her either.

Take Care Seana - one thing I will say is that I was more prone to take my pills in high school if I carried them on my person - in a purse or something rather than going to the clinic everyday. It is much more convenient to handle it on your own than have to deal with the nurse and besides she probably knows more about it than the nurse anyhow.

Take Care,
Lindsey

 

[coltsfan715]

I had a similar problem when I was in high school - heck when I was in school in general. I always hated that I had to wait 15 minutes to get my enzymes at the clinic and then cram food into my mouth for 10 -15 min at lunch while everyone else got 30 min to eat. I hated that I had to feel different and MOST of all I HATED that everytime I ate with my mother she asked me if I had taken my medicine. I always said yes even if I hadn't and a part of me refused to take it if she asked about it.

I honestly don't know why - it makes NO sense to me at all why I would do that. As she ALWAYS loved to point out it was hurting me not her. Still I just saw it as her being "right" and kind of know it all-y and I hated that she was pointing out that I forgot AGAIN. Then when I would say to stop reminding me and I will do it- she would remind me anyway and when I said no I hadn't taken them she would just say see - I knew you hadn't taken them if I don't remind you who will.

That kind of thing almost makes you not want to take them in front of the person because you know you need them but if you SHOW them you forgot a lecture is coming.

Funny thing my mom reminded me until about 1 yr ago that I needed to take my pills and I rebelled until about 1 yr ago. I finally told her to just stop or I would never take them again. I told her that I always took them when she was not around - to which she asked Kurt and he agreed that I did always take them when we were out - I told her that her asking all the time for some reason made me not want to take them. She stopped asking and I can maybe count on ONE HAND the number of times I have missed pills at meal times since she stopped asking. Funny thing is the times I have missed pills I haven't even been with her - I have been alone and it has been a case of my pill bottle being empty or having fallen out of my purse so I didn't have any to take- I still remembered them there were just none available.

I would talk to her and ask why she isn't taking them - is it that they make her feel different, they are a nuisance or is it that she is just tired of hearing you nag her about it - not saying that is the case but I KNOW I felt my mom did. Maybe ask her if she would be more likely to take them if you didn't hound her about it all the time - meaning STOP asking everytime she leaves the house " do you have your pills?" or every time she eats "did you take your pills?". If she says it will help then maybe give it a try and see. Give her a smaller pill bottle to carry in her purse that way you never have to ask her if she has her pills they are ALWAYS in her purse. Or agree that you can ask once a week just to make sure that her bottle is full and has enough pills for her.

I personally don't think that talking to the doctor about it will do anything more than be annoying but maybe that is just me. I know that no matter how many times my docs told me I needed to take them I just ignored them basically - I would tune them out completely - just another lecture from an adult. I say just ask her what is going on - NOT in a pissed off parent way just in a curious what do we need to do to make you comfortable taking them way. Let your guard down so she can feel comfy letting her guard down and being open with why she isn't taking them.

Also to add - just because she doesn't take her enzymes all the time does NOT mean she will get a blockage. I don't know how many years went by that I did not take my enzymes regularly and I have NEVER had an intestinal blockage - knock on wood. I am not saying it won't happen just saying that it is not going to definitely happen to her either.

Take Care Seana - one thing I will say is that I was more prone to take my pills in high school if I carried them on my person - in a purse or something rather than going to the clinic everyday. It is much more convenient to handle it on your own than have to deal with the nurse and besides she probably knows more about it than the nurse anyhow.

Take Care,
Lindsey

 

[princessjdc]

I did pretty good at taking my enzymes when I was a teenager, I did pretty good at taking my pills without anyone noticing. I knew what happend when I didnt take them and that is just one big mess to miss with, not alone being embarrassing too! The thing that I had trouble doing was my treatments, up until my junior/senior year I didnt have to do them, then all of a sudden I get thrown into them and I was like whoa, hold up I dont need this Im healthy, so I wouldnt do them. I found them pointless but eventually I gave in started to do them and now I do them every single day. The difference between then and now, now I know what the treatments do for me and how they help me, then I had no clue. Hopefully she will come around and start doing her meds.

 

[princessjdc]

I did pretty good at taking my enzymes when I was a teenager, I did pretty good at taking my pills without anyone noticing. I knew what happend when I didnt take them and that is just one big mess to miss with, not alone being embarrassing too! The thing that I had trouble doing was my treatments, up until my junior/senior year I didnt have to do them, then all of a sudden I get thrown into them and I was like whoa, hold up I dont need this Im healthy, so I wouldnt do them. I found them pointless but eventually I gave in started to do them and now I do them every single day. The difference between then and now, now I know what the treatments do for me and how they help me, then I had no clue. Hopefully she will come around and start doing her meds.

 

[princessjdc]

I did pretty good at taking my enzymes when I was a teenager, I did pretty good at taking my pills without anyone noticing. I knew what happend when I didnt take them and that is just one big mess to miss with, not alone being embarrassing too! The thing that I had trouble doing was my treatments, up until my junior/senior year I didnt have to do them, then all of a sudden I get thrown into them and I was like whoa, hold up I dont need this Im healthy, so I wouldnt do them. I found them pointless but eventually I gave in started to do them and now I do them every single day. The difference between then and now, now I know what the treatments do for me and how they help me, then I had no clue. Hopefully she will come around and start doing her meds.

 

[thelizardqueen]

When I was younger, I went through a period of hating to take my meds and enzymes, and I admit that I slacked off quite a bit. This was before my teens though. I changed my ways and really started doing all my treatments and taking my meds when I hit 13. I think all CFers go through a phase where they don't want to take their meds *a rebellious phase*. I'm not sure if having the doctor talk to her will make much of a difference - she's got to want to do this on her own. I'm sorry I don't have much advice for you. All I can say is one day I woke up and realized what I was putting my body through. Hope this all works out for you!

 

[thelizardqueen]

When I was younger, I went through a period of hating to take my meds and enzymes, and I admit that I slacked off quite a bit. This was before my teens though. I changed my ways and really started doing all my treatments and taking my meds when I hit 13. I think all CFers go through a phase where they don't want to take their meds *a rebellious phase*. I'm not sure if having the doctor talk to her will make much of a difference - she's got to want to do this on her own. I'm sorry I don't have much advice for you. All I can say is one day I woke up and realized what I was putting my body through. Hope this all works out for you!

 

[thelizardqueen]

When I was younger, I went through a period of hating to take my meds and enzymes, and I admit that I slacked off quite a bit. This was before my teens though. I changed my ways and really started doing all my treatments and taking my meds when I hit 13. I think all CFers go through a phase where they don't want to take their meds *a rebellious phase*. I'm not sure if having the doctor talk to her will make much of a difference - she's got to want to do this on her own. I'm sorry I don't have much advice for you. All I can say is one day I woke up and realized what I was putting my body through. Hope this all works out for you!

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.

.</end quote></div>

i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.

.</end quote></div>

i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

Explain to her how they'll have her lay on a table with her butt out for everyone to see, and stick a tube up it, while she's awake, to fill her with liquid and then drain it out b/c she has a blockage.

.</end quote></div>

i think that is FABULOUS. you have my vote for best idea on this whole thread!!!! <img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[littledebbie]

You know I know it's probably just me but the whole..."tell her she'll need a colostomy, tell her they'll stick a tube up her butt" just seems stupid to me. Teenagers have enough to deal wtih and Courtney doesn't seem like a REBELIOUS problem teenager.

To me she sounds forgetful. I agree with making sure she has a cute trendy small pill case filled and in every purse she owns ready to go and a back up one in her back pack (I have a ton of cute intersting pill box's...it's turning into a collection). I also agree with Lindsey...TALK to her. Ask her is the nagging is helping or making it worse. I'm 27 and sometimes I actually give my Mom permission to nag me about my pills if I know I'm going through a spurt of forgetting (it happens I don't know why) and then there are times I say ...okay permission rescinded thanks for your help..now STOP. Ask her if there's a friend at school she could enlist to give her the old wink and nod after lunch to help remind her...If memory serves most Courtney's friends know about her health right? So maybe a best friend. In highschool my friends knew...and trust me they wanted me to remember my pills as much as anyone <img src="i/expressions/face-icon-small-wink.gif" border="0">