Hey Everyone, this is my first time on this site, but I think it's way overdo. I have a beautiful 16 year old daughter who was diagnosed with CF at age 4 1/2. As a young child and preteen, she was absolutely the best daughter anyone could ever ask for. Recently, within the past couple years though, she has been acting on some really risky behaviors. For example, stealing my car, her grandmother's car, smoking cigs and weed, uninterested in school, tatooing her back. (I just discovered this new tatoo today) She is our only child and we have tried to give her the world. I believe she is having a hard time dealing with her CF, especially the uncertainty of her future. All her life she has had to put up with me saying: "Have you done your medicine?, Do you have enzymes...etc" I'm so worried about her. She's the type of person that goes to great lengths in protecting the fact that she has CF. We did try family counseling, but she won't open up. She says its her decision and right now she is not telling anyone. She does'nt have any boyfreinds, but she says thats because all the boys she likes don't like her. Also she has cut ties with all of her close friends from elem and junior high. (The ones who know she has CF) I have to say we are so fortunate that so far she has not been hospitalized.) However, I am starting to threaten her that if she doesnt do her breathing txs and vest that she will be there soon. I am an RN whe works on a respiratory floor with vent patients. It would absolutely kill me to see my beautiful daughter on a ventilator!!!!!!I will also mention that my daughter is very social but it seems like she changes her friends like she changes her clothes. Maybe another parent has a suggestion or advice. I wish I could get her to go on this site and talk about CF. I think it would help. But, what do I know? She tells me and her father that she can't wait to move out when shes 18 so she can do what she wants. I love her so much that it hurts. I can only hope she realizes this fact sometime soon.
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I'm at my wits end!
- Thread starter NurseKnob
- Start date
well I don't know how much help I can be, but I can say that I told very very few people I had CF when I was in school - only my close friends and boyfriends if they got serious (which was like 2!). Some kids knew from other kids, but I never said much. A lot of people just thought I had asthma or a bad cold all the time! I do think that that was my decision and I do not regret ever having made that decision. (I still do not tell a lot of people, mostly because in my case, I am lucky enough that I haven't really been sick yet and it is not much of an issue.)
I also experiemnted with cigarettes and pot. I was on the swim team and did a lot of physical exercise, so I never used a vest or anything like that - the exercise was enough to keep my lungs clear. And I got tattooed at 16, so I'd say that some of your daughter's behavior is probably normal teen rebellion that has nothing to do with CF. Smoking is a good example. I am sure she knows that it is bad for her, but I think the CF just exacerbates the rebellion. It did in my case: anything I was told I couldn't do because I had Cf I probably did anyway.
I would say, see if you can get her to come here to this site and read some of the things that some of the kids who are her age and who are sick and are on vents and such write about. It might convince her to take a little better care of her health. I know that reading a lot on here has made me decide to take better care of my health, as I am realizing that there is so much that I don't know about this disease and don't WANT to have to find out the hard way! So many people write that they wished they would have cared for them selves better before they got sick.
wanderlost (28w/ CF -- I never remember to log in)
I also experiemnted with cigarettes and pot. I was on the swim team and did a lot of physical exercise, so I never used a vest or anything like that - the exercise was enough to keep my lungs clear. And I got tattooed at 16, so I'd say that some of your daughter's behavior is probably normal teen rebellion that has nothing to do with CF. Smoking is a good example. I am sure she knows that it is bad for her, but I think the CF just exacerbates the rebellion. It did in my case: anything I was told I couldn't do because I had Cf I probably did anyway.
I would say, see if you can get her to come here to this site and read some of the things that some of the kids who are her age and who are sick and are on vents and such write about. It might convince her to take a little better care of her health. I know that reading a lot on here has made me decide to take better care of my health, as I am realizing that there is so much that I don't know about this disease and don't WANT to have to find out the hard way! So many people write that they wished they would have cared for them selves better before they got sick.
wanderlost (28w/ CF -- I never remember to log in)
Mockingbird
New member
CF doesn't stop us from being teenagers, that it doesn't. =-) Did you try on the "families" topic? I'm pretty sure most the parents hang out there, and I know a lot of parents come on here in the same situation. =-)
Joblazer86
New member
i use to be the same way when i was her age!!!i didnt steal though i just was into drugs and partying. i had fun but it has shortened my life.i did all my treatments and took my pills but it still didnt help my lungs. i would say having fun is one thing but smoking isnt a good habit to pick up.if u can get her to talk on here i would be more than happy to talk to her. im only 22 so maybe she'll talk but who knows. my aim is adrenalineo7@aol.com. good luck though!!!
All, I can say is try and hang in there..I am almost 30 and have Cf W/2 little girls of my own now. I went through all of that as a teenager and into my 20's..Although I didn't do drugs and never smoked, I did do my share of drinking. I have the tatoos and had the piercings. Then we hit a point and decide to grow up. Mine was when I found out I was pregnant. Now my life is all about my family. I love my daughters more than life and I want to stay around for them. I was also an only child and my mom never gave up on me!! Good Luck!
I think CFer's rebel a little more because they may feel, well who cares or what difference does it make or even I should be able to do what I want because I have CF. I know I felt that way. All I can say is just be there for her, and she will grow out of it. One of those things, everyone is a little different, that we go through. JMO
Eric
Eric
TCNJcystic
New member
I am just finishing up my teenage years. Good times. I never did the rebellious thing at the scale that your daughter has, but I defintiely dealt with cf related feelings that she is dealing with. As cfers, we often get this pretentious idea from our family and friends that we are living some noble life and setting some example by going on with our lives when in reality we just want to fit in. In reality, we were all unsure and we were all scared at some point. We directed those emotions to different spots. Your daughter to her lifestyle and others to different areas, for me it was music. We all dealt with the same uncertainty's, but it's the fact that they get dealt with at some point that matters.
I don't like hearing about your daughters decisions to smoke or cut ties with her old friends more than you like telling about them. I'm not going to pretend like cf is the only thing that makes a person become so rebellious because then that doesn't say much for the hundreds of normal teens who are rebellious. Maybe by being so rebellious, she's just trying to be normal. She's telling cf to go screw itself (like we ALL have) and that she can be a normal teenager too. It's not necessarily that she's depressed or that she's got nothing to lose (forgive me if that's at all insulting) but that theres a good chance she's just trying to fit in.
But what do I know...
I don't like hearing about your daughters decisions to smoke or cut ties with her old friends more than you like telling about them. I'm not going to pretend like cf is the only thing that makes a person become so rebellious because then that doesn't say much for the hundreds of normal teens who are rebellious. Maybe by being so rebellious, she's just trying to be normal. She's telling cf to go screw itself (like we ALL have) and that she can be a normal teenager too. It's not necessarily that she's depressed or that she's got nothing to lose (forgive me if that's at all insulting) but that theres a good chance she's just trying to fit in.
But what do I know...
This sounds so much like my life. I have two girls 17 & 18 who have Cf. Yes, I heard the deal about moving out when their 18. They know not to try smoking or pot. My kids, I think it would set off the other meds their on. I think it's a threat to keep you worring. I stay on them all the time. I'm very strict about running around, as with all my kids. One thing I did learn is that they know it all, but guess who's always washing out the nebs. and making sure they do them. But don't forget they know it all.
I know this much they're not stupid, they know they have to do certain stuff to stay healthy. So many times I really don't know where to turn but to God. I think all Cf Parents are tested,exspecially teenage years. I would take this disease just so my kids didn't have it.
Hang in there, I think it has to be a test, and YES they have to get smarter than they are.
FT
I know this much they're not stupid, they know they have to do certain stuff to stay healthy. So many times I really don't know where to turn but to God. I think all Cf Parents are tested,exspecially teenage years. I would take this disease just so my kids didn't have it.
Hang in there, I think it has to be a test, and YES they have to get smarter than they are.
FT
Hey there,
Reminds me of when i was 18, actually I'm still like that, just not as much. When i was her age, I partied, smoked, drank, did drugs, you name it. When i think back on it, I don't think my cf had such a big impact on it....it was more my friends and what they were doing. I just kinda went along. I mean, i did have fun, but it definately affected me more than it did them. I would feel sicker after drinking all night, hard drugs definately made me feel bad the next day. I guess it didn't really phase me that much because I have been coping with cf my whole life, so a day or two a week of feeling shitty didn't really bother me. Plus i got to have fun with my friends...
I'm 22 now. I still go out here and their, party, smoke cigarettes (Yes, my one regret) etc etc, and I really enjoy doing it. I know that it probably affects my health negatively, but i mean, just living with cf affects it as well. I think the main thing that she does is her treatments, or at least excercise. if she is going to chose to drink, smoke, than she needs to do something to try and balance it out. Otherwise, it willl REALLY affect her. I run, i life wieghts, and am generally active with work. I think that has had a big influence on how I feel as well
I also didn't really tell anyone about my cf. Well, at first ya cause I lived in a small town, and everyone knew....and I hated it. I just couldn't accept the fact that I was the sick one....I was the one to be pitied (Ok maybe a bot overexxagerated) but whatever. I hated it, so i moved and i haven't really told anyone here. As I grew up, I realized that we weren't given a choice to have cf...and to not do anything about it is just plain STUPID. We are human, and part of being human is the ability to change our circumstance, our environment, and even ourselves. Why stay sick when you can change it? Ya ok it requires a lot of work, and a lot of dedication, but i think people will appreaciate you better, and admire you better if you tried to change your situation rather than dwell on it.
I'm just realizing this now, but it's better late than never. Ask her to read this maybe, or if she wants i can write her an email.....My email adress is Funkybizkit@yahoo.com...
She sounds smart, and I'm sure she'll figure this out all on her own. But just try and keep her doing something for her health, anything, until she does...
Just some thoughts at 330 in the morning hehe
Reminds me of when i was 18, actually I'm still like that, just not as much. When i was her age, I partied, smoked, drank, did drugs, you name it. When i think back on it, I don't think my cf had such a big impact on it....it was more my friends and what they were doing. I just kinda went along. I mean, i did have fun, but it definately affected me more than it did them. I would feel sicker after drinking all night, hard drugs definately made me feel bad the next day. I guess it didn't really phase me that much because I have been coping with cf my whole life, so a day or two a week of feeling shitty didn't really bother me. Plus i got to have fun with my friends...
I'm 22 now. I still go out here and their, party, smoke cigarettes (Yes, my one regret) etc etc, and I really enjoy doing it. I know that it probably affects my health negatively, but i mean, just living with cf affects it as well. I think the main thing that she does is her treatments, or at least excercise. if she is going to chose to drink, smoke, than she needs to do something to try and balance it out. Otherwise, it willl REALLY affect her. I run, i life wieghts, and am generally active with work. I think that has had a big influence on how I feel as well
I also didn't really tell anyone about my cf. Well, at first ya cause I lived in a small town, and everyone knew....and I hated it. I just couldn't accept the fact that I was the sick one....I was the one to be pitied (Ok maybe a bot overexxagerated) but whatever. I hated it, so i moved and i haven't really told anyone here. As I grew up, I realized that we weren't given a choice to have cf...and to not do anything about it is just plain STUPID. We are human, and part of being human is the ability to change our circumstance, our environment, and even ourselves. Why stay sick when you can change it? Ya ok it requires a lot of work, and a lot of dedication, but i think people will appreaciate you better, and admire you better if you tried to change your situation rather than dwell on it.
I'm just realizing this now, but it's better late than never. Ask her to read this maybe, or if she wants i can write her an email.....My email adress is Funkybizkit@yahoo.com...
She sounds smart, and I'm sure she'll figure this out all on her own. But just try and keep her doing something for her health, anything, until she does...
Just some thoughts at 330 in the morning hehe
ccflewallen
New member
NurseKnob, I agree with Mockingbird. This is the wrong "room" to come for advice on your particular topic. For one, most in here are adults w/ CF who have tried or are still doing the things your daughter is experimenting with. And two, some even think its ok to keep doing it. The fact is, CFers do not need to be smoking anything, let alone "weed". I am judging the act of smoking, not the person doing it. Just my opinion, because many in here think you are judging them if you say "smoking" is bad or "wrong". Not all, but many. I would not let your daughter read that last message about the 22yr old who smoked, drank, did drugs, etc.. when he was 18. Not everyone "grows out of it". He is 22 and hasnt grown out of it. He may be fine now, but it will catch up with him, exercise or no exercise. Just encourage your daughter. Getting "mad" at a teenager seldom does any good. I dont have kids, so I cant tell you exactly what I would do in your situation. Dont give up though. Always make sure she REALLY knows you are saying what you say out of love for her, and not anger or spite. Teens interpret things in weird ways. Anyhow, I wish you and your daughter the best of luck. Will pray for her as well.
ccflewallen
ccflewallen
...*sigh* Here we go again... ccflewallen, if all you're trying to do is give an indirect lecture to the rest of us, stop while you're ahead. I don't think it's right of you to suggest in any way that some of us can't be helpful because we "have tried or are still doing" the things that NurseKnob's daughter is!! That would make some of us a little wiser to the subject, don't you think?! Geez...
Anyway, to the topic at hand... NurseKnob, I'm 19 myself and have been right where your daughter is. I never did drugs excessively or stole anything, but I can say that having CF has taken a heavy toll on my teenage years. For instance, in my case, I sometimes feel inadequate because I can't keep up with my friends. If we go to the mall and walk for a long time, I end up feeling stupid because I have to ask if we can take a break for a few minutes so I can regain my breath. Your daughter needs to understand how lucky she is having not been hospitalized yet. Everyone (at least most of us) with CF gets that certain feeling of dread when you think about it and what it could do to you in the future. But your daughter seems to have a great set of lungs so far. She needs to know that her CF is nothing to be ashamed about or something she needs to hide. If she wants to talk, I'll also lend an ear and try to help as best I can. My email is darkfangmistress@hotmail.com Obviously I'm not a parent, so I can?t give you any advice on how to handle this yourself. But in my opinion, I don't think there's much you can do as a parent. It's up to your daughter to handle her situation and come to terms with it herself.
Anyway, to the topic at hand... NurseKnob, I'm 19 myself and have been right where your daughter is. I never did drugs excessively or stole anything, but I can say that having CF has taken a heavy toll on my teenage years. For instance, in my case, I sometimes feel inadequate because I can't keep up with my friends. If we go to the mall and walk for a long time, I end up feeling stupid because I have to ask if we can take a break for a few minutes so I can regain my breath. Your daughter needs to understand how lucky she is having not been hospitalized yet. Everyone (at least most of us) with CF gets that certain feeling of dread when you think about it and what it could do to you in the future. But your daughter seems to have a great set of lungs so far. She needs to know that her CF is nothing to be ashamed about or something she needs to hide. If she wants to talk, I'll also lend an ear and try to help as best I can. My email is darkfangmistress@hotmail.com Obviously I'm not a parent, so I can?t give you any advice on how to handle this yourself. But in my opinion, I don't think there's much you can do as a parent. It's up to your daughter to handle her situation and come to terms with it herself.
Mockingbird
New member
Ha ha, I wasn't saying she was in the wrong room. She's perfetly wlecome in this topic as well. =-) I was just saying there might be people in the family section that don't visit the adult topic that can help as well.
Sorry for the misquote mockingbird. I will rephrase: "Did you try the 'families' topic? I'm pretty sure most the parents hang out there, and I know a lot of parents come on here in the same situation."
Sure anyone is welcome to this topic (except me maybe : ) I like what Loblazer86 said, it was honest. I like reading what everyone says, we just dont always agree, which is fine.
As for a lecture, if you felt like I was lecturing, then you probably need one. But that wasn't what I was doing. Lord knows that if anyone needs a lecture, it's me.
ccflewallen
Sure anyone is welcome to this topic (except me maybe : ) I like what Loblazer86 said, it was honest. I like reading what everyone says, we just dont always agree, which is fine.
As for a lecture, if you felt like I was lecturing, then you probably need one. But that wasn't what I was doing. Lord knows that if anyone needs a lecture, it's me.
ccflewallen
No, I am not (at least purposely) negative toward anyone who has done rebellious stuff. Just think that if we choose to share those things on here we shouldnt paint a pretty picture with it. Because there is not much pretty about risking your life for a good time. I know that everything rebellious isnt risking your life, but you know what i mean i hope. Im 26, of course I've done my share of things I probably shouldnt have done. And I am glad for the ones who share and include truths like Joblazer86 did. He shared what he did, but also shared how he knew that it hurt his lungs and maybe shortened his life. I hope that people will realize that I do not judge peoples character by their actions. I will quite often however, voice my opinion on a particular action or subject. For instance, if I say "Lying is wrong", it should not be assumed or interpreted that I am saying "people who lie are bad". Know what I mean?
ccflewallen
ccflewallen
I do. Believe me, I don't condone any kind of radical behavior. And I certainly don't try to paint a pretty picture. But being of the personality that I am and hanging around a darker crowd (I'm gothic by nature because I find that it helps me cope in some weird way), I've seen the people who do those things (like smoking pot, etc.) and I somewhat understand why they choose such a thing as an outlet because I used to be one of them. Like I stated earlier, I didn't do drugs, but I hated the world, everybody sucked, etc... Choosing an alternative lifestyle (at least, not what most people would call 'normal') helped me to cope. Some people use drugs and alcohol to the same effect. I used to think that they were all just bad people, but we all have our reasons. They may not be very good reasons, but nonetheless, I've learned not to judge without knowing the whole story (at least I'm trying). I'm usually one who judges someone by their actions, but if you're not that type, more power to you. In that case I'll try not to take what you say out of such context. <img src="i/expressions/face-icon-small-cool.gif" border="0">
Hey guys,
Being the 24 year old posting about smoking, doing drugs...I am not glorifying it, I am mearly stating the truth, as the girls mom was. I smoked, I drank, I did all those things, and I liked it. I liked hanging around with my friends, smoking a cigarette, drinking a beer, and just having a good time. Ok so it affected me healthwise...ya so what. Living affects me healthwise. I HAD a great time, and the memories of sitting outside, relaxing hanging out with my friends will forever erase the memories of me being in the hospital later on. I know I probably could have found better ways of fullfilling my hapiness, but at the time, that was it. Your daughter will figure things out....or she won't. The fact is, if you've tried and tried to talk to her, it won't work, at least the way you are doing things. Reach her another way, leave notes, tell her doctors, I dunno. She'll figure things out. If it's too late, it's too late.. nagging at her might not be the best thing right now. At least in my experience....
I dunno, take this how you will. I'm just going on a rant about the way I saw things when i was that age.
Being the 24 year old posting about smoking, doing drugs...I am not glorifying it, I am mearly stating the truth, as the girls mom was. I smoked, I drank, I did all those things, and I liked it. I liked hanging around with my friends, smoking a cigarette, drinking a beer, and just having a good time. Ok so it affected me healthwise...ya so what. Living affects me healthwise. I HAD a great time, and the memories of sitting outside, relaxing hanging out with my friends will forever erase the memories of me being in the hospital later on. I know I probably could have found better ways of fullfilling my hapiness, but at the time, that was it. Your daughter will figure things out....or she won't. The fact is, if you've tried and tried to talk to her, it won't work, at least the way you are doing things. Reach her another way, leave notes, tell her doctors, I dunno. She'll figure things out. If it's too late, it's too late.. nagging at her might not be the best thing right now. At least in my experience....
I dunno, take this how you will. I'm just going on a rant about the way I saw things when i was that age.
I thnk the problem that alot of us run into is that "civilians" w/o chronic health problems (not just CF) tend to focus on that one thing and think that it's all we ever think about or should think about.
I don't think people do it on purpose, but how many of us have been told "YOU of all people should or shouldn't...." Or that we can't do something because it's too hard. It's like people expect us to be entirely about our CF and not do anything else but be sick.
I know it's really hard as a parent to watch your child do "bad things", but we are humans and we grow, change make mistakes and live our lives.
I don't think people do it on purpose, but how many of us have been told "YOU of all people should or shouldn't...." Or that we can't do something because it's too hard. It's like people expect us to be entirely about our CF and not do anything else but be sick.
I know it's really hard as a parent to watch your child do "bad things", but we are humans and we grow, change make mistakes and live our lives.
Jennifer11
New member
Hi Nurse,
My sister has 5 daughters ranging from 18 to 8 years old. None of them have CF, my sister and her middle daughter are carriers. Teenagers will be teenagers regardless. Her 18 year old just went and got a tattoo without her mother knowing and since they are like little sisters to me, they tell me everything. She has experimented with drugs and has stolen things too. What you have to find out is, who her new friends are that are influencing her, peer pressure is harder now then what it was back in the day. Kids are bringing guns to school now, not to mention I see 10 year olds with cell phones. Her 14 year old pierced her own belly button when she was 12, and has already experimented with sex. It's scarey being a teen this day in age, my daughter is only 10 weeks old, I'm afraid to see what the world is gonna bring her when she's a teen. Even though she has CF and is a teen, don't be afraid to give her a little whack on the hiney,(which is legal as long as you don't leave any marks, said from a CPS worker, lol) she is still your daughter. Discipline can be a good thing for the right reasons, don't let her walk over you.
My sister has 5 daughters ranging from 18 to 8 years old. None of them have CF, my sister and her middle daughter are carriers. Teenagers will be teenagers regardless. Her 18 year old just went and got a tattoo without her mother knowing and since they are like little sisters to me, they tell me everything. She has experimented with drugs and has stolen things too. What you have to find out is, who her new friends are that are influencing her, peer pressure is harder now then what it was back in the day. Kids are bringing guns to school now, not to mention I see 10 year olds with cell phones. Her 14 year old pierced her own belly button when she was 12, and has already experimented with sex. It's scarey being a teen this day in age, my daughter is only 10 weeks old, I'm afraid to see what the world is gonna bring her when she's a teen. Even though she has CF and is a teen, don't be afraid to give her a little whack on the hiney,(which is legal as long as you don't leave any marks, said from a CPS worker, lol) she is still your daughter. Discipline can be a good thing for the right reasons, don't let her walk over you.
L
luke
Guest
knob,
Many CF kids, as do healthy kids, go through "fazes" of rebellion. I did the same things, "borrowed" a car, broke into houses, bought/sold/used all sorts of drugs and lived pretty recklessly for several years. I am "better" now and I think I turned out just fine. I always try to tell parents their kids will "grow" out of it because that is the only answer I have. Be as supportive as possible so when she decides she is tired of rebelling she will still love you. Another option may be some sort of counseling....has you daughter got caught up in the "wrong" crowd???
Luke Bailey, MBA RRT
Many CF kids, as do healthy kids, go through "fazes" of rebellion. I did the same things, "borrowed" a car, broke into houses, bought/sold/used all sorts of drugs and lived pretty recklessly for several years. I am "better" now and I think I turned out just fine. I always try to tell parents their kids will "grow" out of it because that is the only answer I have. Be as supportive as possible so when she decides she is tired of rebelling she will still love you. Another option may be some sort of counseling....has you daughter got caught up in the "wrong" crowd???
Luke Bailey, MBA RRT