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anonymous
03-12-2004, 09:31 PM
HI, I have a young daughter with CF and I am concerned about some of the postings in the teen section of this site. I cannot understand what it is like to have the disease but I would like to know how I can help my daughter so that she is accepting of her condition. Many of the teens on this site are bitter and feel that life is stacked against them because of the CF. I've also heard from our clinic that the teens have a tough time dealing with CF. I do not want my child to grow up bitter, and want her to know that I will be there for her no matter what the hurdle is. I want her to live life to its fullest and be as happy as she can be. For those of you that are in your teens, or passed these difficult years, I would like to know what your parents did that allowed you to be comfortable with your condition and happy. We are encouraging her to get involved in sports and hope that she meets a nice group of friends as she grows up but we don't have any control over her friends reactions.Any thoughts?

AbsintheSorrow
03-13-2004, 01:35 AM
First of all, encourage sports, but don't push them, because she will come to a point where she won't be able to keep up with the running and whatever else have you. Second, all of us get bitter sometimes. But for the most part, we're okay. I have my moments, not where I feel like the world is against me, but just that it gets so hard sometimes I want to say forget all of it (usually in more vulgar terminology). But overall, I'm pretty good. I'm in school, getting good grades, and loving it. She is very likely to find a nice group of friends at somepoint, but you have to keep in mind there will be kids who make fun of or shun her. She will encounter crappy people. She is also likely to encounter crappy guys once she starts dating, who will avoid her because she's sick. Now, as far as teens having a tough time... well of course. Teens that are healthy have a hard time being teens. Not only are they getting used to growing new body parts and boys being maybe not so yucky, but they have to deal with it in an unusual body.. that most of the time, seems like it's punishing them. So boys are cute now... and some of them actually don't like me because I'm sick? Well that's unfair! And it's true. It happens, and it IS unfair. But she will also encounter real people who accept her for who she is. Not only that, but she'll find people who even support her. Having her parents support her is lovely. My parents have always been supportive. For one thing, and some parents don't understand this, but you have to pay attention to me here.. you cannot lock her in a closet. That is to say you can't protect her from everything and never let her do anything. What is a life lived, even if a little longer, if it's lived in a box? You get my point? She will need space and independance, especially as she becomes an adolescent. My parents knew I tried drinking, and allowed it as long as I didn't drive drunk. Which helped. It meant I got to drink like the other kids, and because my parents allowed me to do normal teenage things, I did the less destructive, and avoided the more destructive, like drunk driving. My mother also knew I tried smoking pot. I never smoked cigarettes, but I went through 2 or 3 years where I smoked pot at parties. Maybe once a month, or so. And my mother said she didn't like it, not because it was weed, but because I was smoking it... but either way she wouldn't forbid it. I know that was hard for her. Of course she doesn't want me smoking, but she still didn't forbid it. And eventually I gave up, realizing it wasn't worth the damage it caused. But even with great parental support, she also will need people her age to support her. I have a few close friends who are always there for me. I have a boyfriend who loves me despite my being sick. She'll meet with the bad, and you cannot protect her from that all through her life. But she will also meet with the good. And when she meets up with the good, it'll make up for the bad. I've gotten dirty looks in public, boys have avoided me, etc etc. But in the end, it's worth it, because now I have a few friends that are golden. I also have Mike, and he's better than I could've imagined asking for. He knows every gross and depressing detail of CF and he knows he'll lose me far before he dies, and he sticks by me nonetheless. He spent the night in the hospital with me one time, and slept on the hard, cold, tile floor. To sum myself up: Support, but don't smother her. And she will meet people in her life that treat her like dirt, but she will meet other people who treat her like the good person I'm sure she'll be. Feel free to email me anytime if you like to go into even further detail, or ask other questions, I'm always willing to talk. [email protected] Or IM me with the same name minus the yahoo. AbsintheSorrow. Hope I've helped.

Mike6sic6
03-13-2004, 02:31 AM
When i was younger i really didn't understand CF much, i just took my meds and did treatments like i was told, and i never really told my friends that i have it. but around the ages of 13 and 14 the coughing started to bother me and now @ 17 i get short of breath a lot and i'm an all around lazy kid.i played basketball & scoccer from 3rd to 6th grade. Now i play the computer =/ My parents really didn't treat me special in anyway cause i have CF, i want them to treat me like an adult. The only major thing that bothers me about having CF is the coughing & flem. cause when i am in school, there is nowhere to spit it out and it sucks.When i was in 4th or 5th grade i had an IV and also had sinus surgery. I remember all that stuff, i'm 17 (18 in April) now and i'm not bitter at all, just a really lazy guy.oh yeah, and get flu shots every year, its a must.

anonymous
03-13-2004, 09:36 AM
Dont forget, this site doesnt show a balanced cross section of the CF population, many of the people who come on this site do so because they have questions to ask or they need to vent stuff. so there are hundreds of other teens with CF for whom it doesnt get in the way so much! also, this is a site to vent as for the bitterness or negative attitude, doesnt that come with everything when you're a teenager?!? i certainly remember screaming at my parents telling them it was SO unfair that i had to do all these meds and stuff, but i wasnt "depressed to my very soul" or anything, i was being a teen! i also rememeber going through a stage of not doing my meds properly, sort of rebellion but mainly i wanted to live my life and thought i couldnt fit them all in. i think everyone goes through this in some way, and the thing that snapped me out of it was realising how fast you can deteriorate if you dont comply. it was a shock; i wasnt invincible to CF.even if she does have a bitter stage in her life, i dont think it means she will grow up bitter and resentful. my mum always pointed out to me that everyone has their burdens to bear, and its not just me having a hard time!

anonymous
03-15-2004, 03:47 PM
I didn't have bitter CF thoughts when I was a teen. They came when I got to college and suddenly was sick all the time. My teen years were very healthy. I was also a rebellious girl. I partied alot and got into some trouble, but it was a blast. i was very involved with theater and forensics, very social and did volunteer work. My whole school know I had CF and it didn't make a difference to anyone. My parents taught me about CF when I statred talking. My father was a physician, so they didn't sugar coat it and used medical termanology. I think it was important that I could answer people's questions for my self when I was young. As long as your daughter has a good support system of friends and family, she will be ok. I got mine from being involved, and connecting with as many people as I could. Actually, I had more problems with my three closest girlfriends than with anybody else. You know how girls are... they were so absorbed with trying to be popular, they just didn't get that there are more important things. It drove them crazy that I had so many different kinds of people for friends, because I wasn't as judgmental, and much friendlier. I got alot of "why are you talking to so and so, he's a dork".Debbie22 yr old w/ CF

anonymous
03-16-2004, 05:56 PM
I was reading the responses you got to your questions about being a teenager and suddenly realized I recongnized one of the responses as my daughter's writing. I am "AbsintheSorrow's" mom. I don't think I need to say anything else as she seems to have said it all! I'm very proud of her! She is on the Dean's list at Northeastern University in Boston pursuing her dream of a future in American Sign Language as an interpreter or a teacher of deaf children and is a wel rounded, mature young woman who I am proud to call my daughter.

anonymous
03-16-2004, 08:49 PM
Mom, You should be proud of your daughter, and all that you have done to make her the person she is today. I hope I am as successful with my daughter as you have been with yours. She sounds like a remarkable young woman.Emily, Thank you for your advice and wisdom. I will store keep it in mind for future years.HeatherMom to Ashley w/cf age 3

anonymous
03-17-2004, 02:17 AM
I am a little confused:So does CF make u have weird thoughts?DOes it make u depressed sometimes???

anonymous
03-17-2004, 04:48 AM
CF does not give you weird thoughts...well not any more weird thoughts than anyone else lol. But some CFers get depressed because living with CF is NOT easy. There are treatments and doctor visits, and the hospital. Sometimes CFers get sick of all this extra work to keep ourselfs healthy and it gets us down in the dumps. Sometimes I wish I could take a vacation from my disease. I also get depressed sometimes because I get scared about my health and if I am getting any worse or I worry that my health may decline drastically in a short amount of time. I am sure all Cfers get afraid sometimes and sometimes upset about what we have to deal with, but thats why there are support groups like this one...to get support from others who are feeling the same thing.

anonymous
03-17-2004, 04:25 PM
hey ....im 18 ill be 19 at the end of the month and i was just diagnosed with C. F when i was 17, i was always coughing and no one ever knew what was wrong becasue i was never sick until i was about 15 years old....Now that i know i have this diease i feel like a stronger person ...i am not bitter at all i have a great group of friends that sit with me while i do my medicine and take care of me when i go in the hospital...My family supports me and is behind me 100% of the way.. I go snowboarding and im in college right now do not think that just becasue of this diease you can not do stuff.....i do what i want and o it at a speed that i can handle...for instance when i go snowboarding i go down the mountain and than take a break and than go back i can go all the activites i just need breathing time....i wud hear back from anyone....sincerely, Danielle

anonymous
03-17-2004, 10:04 PM
i have c.f and im 12 13 on saturday lifes hard but 4 us with c.f lifes normal apart from all our medication e-mail me on [email protected] truely seth brown<img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
03-18-2004, 11:01 PM
Hiaz.. i have a large problem, myabe not so large after all. my middle-class family used to depend on my father ( majority) on his pay..but now it that we have to start saving. i don't mind him losing his job..at least he can finally spend some time to coach & maybe ( hopefully ) understand me , something he has not been able to do since his very busy sechdule. personally i still do undestand why he was given the sack...he was very hardworking..once he stayed in the office overnight. but then i realised something very very bad will happen.....i think he was brought up in a traditional chinese family who holds the bbelif strongly that MAN ARE ALWAYS RIGHT & WOMWAN MUST ALWAYS ABIDE BY HER HUSBAND......such a MCP ( shprt for male chivanist pig!!!!)..i hate that cos he pratically throw vugularites at my poor mother over the slightest thing like not adding onions in the soup ( such a trivial & small issue..still want to scold...so idotic!!!!)....now that he loses his job , he says he does not want to find a job or attending free or subsidised courses by the local community help centre...he claims that HE IS A PROFESSIONAL ..HE HAS SUCH A HIGH EGO THAT HE REFUSES TO ACCEPT SUCH A LOW PAYING JOB....( TRUST ME HE IS NOT EVEN NEAR THE RETIREMENT AGE IN OUR COUNTRY BUT HE IS QUITE OLD)..NOW SHOCK OF SHOCKS....HE WANTS TO SET UP HIS OWN BUSINESS.....i know as his son i ought to support him...but then...oh my god..it seems so unrealistic ..can't he just accept it & at least find a decent job with a low pay..its alright..to be frank , i am worried , he expects that i get a scholarship to university and i am sitting for a national exam this year.. THE WORST THING IS THAT HE IS THE ONE WHO WANTS TO BE " PROFESSIONAL", WANTS TOS ET UP A COMPARY..BUT HE REFUSES TO DO THE WORK LIKE FINDING INFO, REGISTER IT HIMSELF..HE EXPECTS MY MOTHER TO DO ALL THESE ( AND MIND YOU , SHE IS STILL WORKING).....i find that he is too egoistic , ( over - confident of himself)...i sincerly hope that he finds a job as soon as possible & not " dreaming" to set up a company when u r nearly at your retirement

anonymous
04-29-2004, 12:36 PM
i just do not know why i feel so free without my father at home......i do not like him but i do not hate him either..there stilll 2 be a invisible war betwwen us..why hwy why/////haiz

NoDayButToday
05-04-2004, 02:47 AM
I'm not sure if bitter is the best word to describe teens with CF. Bitter is not how I feel. I resent the fact I have cf, that I can't live a normal life like my friends; but those feelings are about stupid things, like having to sleep on my back because of my bard button, or not being able to carry a little purse because of my many meds i take everywhere with me.Instead I've become a control freak. Since I can't control having CF, and even if I do all my treatments diligently fate still dictates the path CF takes. On the weekends, my friends put me in charge of making plans, whose parents will drive us where. I tell my mom what I want for dinner. I sound like a brat, but they are the little things I have total control over, which is what healthy people have over their bodiesAs for your daughter, there are many different coping mechanisms. Mine works for me, and hers will work for her. As long as it isn't a self destructive habit, I think having a coping mechanism is healthy. PS- Remember that even if your daughter didn't have CF, her teen years would still be trying ones. I don't think anyone has completely blissful teen years LOL

megger2103
05-05-2004, 02:22 PM
In some ways, I've been bitter about having CF. I look at my older sister, who doesn't have CF, and wish that I could be her so that I would be able to escape CF. I've always wanted to be a normal person. Especially now, being in college, I really don't tell anyone I have CF except for the friends who know from high school that go here with me. Sometimes I think that if people don't know I have CF, they won't treat me different. There have been a few times when people have found out about the CF or I've told them that I have CF and then all of a sudden they either stop talking to me or treat me like I'm some fragile thing. My parents have been nothing but great about it but sometimes I feel like they don't realize that I want to get past this and try to live a "normal" life.

anonymous
06-06-2004, 08:57 PM
i hate me to dead that mcp, he is now jobless due to face & my mother thought that at least he might be able to help with the house load since he is not workin , instaed she found herself more busy than ever..that man ( sht him) expects her to serve him everyting if a glass of water cos , u know his damn reason..cos he is a man , the head of the house & that woman must bow & serve him ..ridiculous..he expects my motjher to do stocks after she cook & wash & work for the family while he just sits down & hurl vugualritis at the poor soul who have already been so tired after a hard days's at work........ireally hate him & at times wanted to kill him , but he is not worth my life . the worst thing now that is he wants to use violence on her now, i can't stand it ..if she do not bow down to him, he would treaten to kick her.....if she forgotten to put back something in its original position , he would put or pour it on her bed....wheras if he has forgotten & we reminded him, he would accused us of getting even & question why we don't help him & threaten to beat people up. everyday , he just stays meaninlessly at home doing nothing & venting his fustration on her when she comes home. he has a master degree but insists he wants to relax & tour europe.......oh lord...where's fairness??? i hate u .....S&gt;O&gt;B

anonymous
06-07-2004, 04:50 PM
To the alst poster.....I know how you feel. My dad is basically the same way. So far he still has a job but he threatens to quit everyday because my mom has a job. he says she can support the family. And you know what he would do. nothign but sit around on his fat butt all day long complaining that we aren't there to kiss his rear. he yells at my mom everyday. he says she is a lazy good for nothing when it is her who keeps the house running. cooking cleaning, yard work, driving my brother to school activities, and keeping a full time job, and when i still lived there she was a nurse to me, sometimes still is. all parents know taking care of children is hard and add cf on top of that it can seem tons harder. I have CF my brother does not. Although my parents are still together my mother has done everything. She is like a single mother with some lazy man sitting inside doing nothing. Oh but he thinks he is doing everythign because he bring a check home. he thinks he is there for his kids because he bring a check home. what kind of father tells his daughter that she is the cause of all his pain and his drinking problem, its because of her that he is stuck in a hell hole and drinks to much. thats right thats what he told me. So if i was and still kinda of bitter its not to much related to CF its related to my father and then you can add cf to the end of it. To the first poster asking about bitterness....I think its jsut a teen phase. All teens find something to be unhappy about and bitter towards and cf is an easy target. my case it was my father. and then having cf didn't help any. Lots of things cause teens to be bitter, not fitting in, not being athletic, not having a g/for b/f , not having money, school mates...anything..its just that time in their life. they grow out of it eventually some sooner than others some never....some don't even have a bitter stage. doesn't matter if they have cf or not. Sorry for the long post but thats all i wanted to say.amanda

Sami
06-22-2004, 11:04 AM
i really don't think it is fair to say cf teens are being bitter about thir condition. if you think about it, all teens are rebellious and think that every little thing that goes wrong is because the world is out to get them. a teen is a teen. a teen with cf has to live with the fact that they can't do all the things normal teens can do and their aloud to get a little upset from time to time. when i was in school i would get teased for being skinny and i was called a drug attic cause some people who didn't know about my condition would catch me putting more than 2 pills in my mouth at a time after my lunch. i felt angry all the time cause of stuff like this. so it's normal to be upset at such a confusing age.

anonymous
06-25-2004, 04:14 AM
you guys , thanks for all the support , no matte rhow hard life still have da go on, how matter how bleak it is , at least we are luckier than some others in other part of the world...ROCK ON..STAY OPTIMISTIC :-)

anonymous
03-14-2005, 01:03 AM
Hey!
i have cystic fibrosis and im coping well with it! i also have a mickey button tube in my stomach 2 feed me over nyt.
all my freinds are great and dont kare that i have this diesease they are all caring and surportive.
well got 2 go now

bubi yours sincerly Reece Brown

luke
03-14-2005, 09:50 AM
Mom,

I was never bitter as a child with CF; I do feel that I am a much more mentally healthy adult than I was a teen though. I am sure that my case is not an isolated one...but my mother reveled in the fact that I was sick. Not that she had Munchausen or anything, but she sure did seem to enjoy talking about my disease. See my mother, who I know longer speak to by the way, had her own issues. She thrived for attention and would get it anyway possible. I can remember her talking about how sick I was and how I would only live another year while sitting right beside me in the hospital. She actually had my grandfather (since past, who I loved very much) buy my burial plot before I was 5. My father, he's not getting any awards either, chewed her out over that one (they divorced when I was 2)! I wasn't allowed to things kids my age were allowed to; like playing football or baseball or even be in cub scouts because I was too sick! So what I am trying to say here is this. There is a line...a line between too much and not enough support. The trick is that CF becomes almost "normal" to us, it is just life. Taking a neb treatment to us is as routine as you tying your shoes. As big of an issue the treatment of CF is it can not get in the way of living. When CF gets in the way of living, bitterness may set in.

Example: look at Coll's pic's dancing with her PICC line in, who do you think is winning, her or CF?


Luke 29/cf, 3 days to go


P.S. Sorry to throw that baggage out there, my situation was a strange one. I wish my parents were good enough to actually care about my happiness like you appear to do!

NoDayButToday
03-14-2005, 01:50 PM
Haha Luke, I was NOT missing my chance to be a bridesmaid! <img src="i/expressions/face-icon-small-smile.gif" border="0">

LiLnAtZ69
03-16-2005, 04:43 PM
cf is a life threatening lung disease which u are born with there is no cure 4 it just yet. im 14 and i know all that! :-D

anonymous
03-20-2005, 11:44 PM
Let me tell you right now all girls and probably boys but Im not one and dont have any go through rough times in their teen years and at CF to that and it is very hard. Just be there for her, and basically do what Emily's mom did. Let her be her. Encourage her in everything she is interested in. My daughter is involved in many things. She just turned 18 and is having some troubles, but has a great exciting involved life and great friends. Yes, people are cruel but you have to learn to deal with them and move on. Good luck to you

anonymous
03-30-2005, 10:14 PM
Hello??
What Friend Name note