17 yr old female w/ CF needs to talk to other teens!

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NoDayButToday

New member
Heyi'm coll and am 15wcf.... i was a pretty typical cf case (ivs 1/a year, skinny but not dangerously so) until last summer or so... i've missed out on almost my entire freshman year of high school, since ive been on ivs half the time and then too sick to go the other half. but recently i got a bard button and am doing night feeds which make me feel alot better (and ive gained 7 lbs <img src="i/expressions/face-icon-small-smile.gif" border="0">). so that all means that pretty soon im going back to regular school. has anyone ever been out of school for so long that they almost feel like its easier just to not go back and continue home tutoring/schooling? this is the first time im a bit scared to go back, i think partially because its a new school for me and also that several seniors were very mean to me about my size in the beginning of the year, calling me bulimic and anorexic. but anyway, thats what ive been thinking about lately and maddy, if you ever want to talk my aim sn is babic420<img src="i/expressions/face-icon-small-cool.gif" border="0">
 
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megger2103

New member
Hi, my name is Megan, I'm 19 and a freshman in college. I've had CF since I was 2 weeks old. So I've dealt with it for a while. The summer going into my 8th grade year, we found out that I also have Diabetes. It's been a real juggle for me. It's been hard because I don't feel like I'm a normal person. I'm lucky that my friends don't judge me but at the same time I feel like they do because I honestly don't think that any of them really understand. Sometimes I feel guilty having this disease because it costs my parents so much for medicine and doctor visits. But I got lucky and was one of the first in the CF study at the UW-Wisconsin Children Hospital and Clinics. If anyone wants to talk about CF or anything else and you have AIM...Just IM me at megger2103!!
 
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anonymous

New member
HeyIm Chad. Im 27 w/cf. I too grew up decently healthy or "mild cased" Ive taken some hits over the years w/infections, pneumonia, but relatively always bounced back. Being in hospital Ive made friends with cf and saw a different side. I had a friend 23 who was as healthy as I was, but with in six months needed a transplant, and now is sick. Also another friend who was decently healthy who obtained B cepacia and died within a week. Seeing things like this has shocked me and scared me. But at the same time, I still play soccer, hockey, and many other sports. I admit, I dont do my inhalation treatments like clockwork like I should. and at 27 its starting to show. Anyways, what I am trying to get at here is, yes there are statistics and age medians and all that, but deal with your cf on a personal basis. Everyone is different so dont let what you read eat at you. Take it into consideration, but dont say , Hey thats gonna be me, cause it may not be. Cf is unpredictable, could be good, could be bad. I never had an admission til I was 19. Then I took 1-3 a year since then, but now it seems to be tapering off again. I havent had one in 8 months (knock on wood) Know your symptoms and deal with them according and you'll be good<img src="i/expressions/face-icon-small-wink.gif" border="0"> If anyone wants to chat with me, or email me, my email is chad_cortese@hotmail.com. Oh yeah, and as for relationships, there are plenty of good people who are out there that are more than willing to understand and be with you through this. This was something I was always worried about, finding a girl and her leaving me cause I had cf. Take care of yourselfs...Love
 
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anonymous

New member
Hey, my boyfriend has cystic fibrosis and i dont know if he's going so well... i love him sooooo much and im worried about him he isn't doing his proper masks ans medication and i dont want him to get any worse then he is....hes also had it his whole life and i wish someone with cf would make him realise hoe serious it is and that i love him so much hes 18 years old. so if anyone has n e thing to say e-mail me foxy_moxy2001@hotmail.comthanks, ashli
 
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anonymous

New member
i dont have cf but im doing a proj at school about cf and wuz wondrin if u could have a word wit me. email at stephkid1@aol.com. plz<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
hi i am a studen and i am writting a paer on children with CF. my cuz died from this about a year ago. me and her were very close and i followed the illness. but what i want to do is in my paper get someone feelings on how it changed the way they learned or even if it affected thier life in school. i will also luv it if it did not for someone to tell me how they delt with it and stuff. so i found u on here and i would luv it if u wrote back to me i will give u my e mail....and if u know anyone else or if anyone else reads this u can also send me mail and let me know. and i will be glad to use all my storys i hear in my papers (with out names) if u let me. thanx so much and take care...

EMAIL: MICR0MAN02@AOL.COM

please dont be shy to email me

thanx
manny
 
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anonymous

New member
hi i am a studen and i am writting a paer on children with CF. my cuz died from this about a year ago. me and her were very close and i followed the illness. but what i want to do is in my paper get someone feelings on how it changed the way they learned or even if it affected thier life in school. i will also luv it if it did not for someone to tell me how they delt with it and stuff. so i found u on here and i would luv it if u wrote back to me i will give u my e mail....and if u know anyone else or if anyone else reads this u can also send me mail and let me know. and i will be glad to use all my storys i hear in my papers (with out names) if u let me. thanx so much and take care...

EMAIL: MICR0MAN02@AOL.COM

please dont be shy to email me

thanx
manny
 
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NoDayButToday

New member
Manny,
As you probably know because of your cousin, CF doesn't affect the brain, cognitive abilities or the ability to learn. A person with CF is just as able-minded and intelligent as someone without, unless they have another reason not to be (learning disability, cerebral palsy etc). So when I'm in school I have absolutely no trouble at all keeping up, getting good grades and the like. What is hard is when I'm absent for IVs or just because I'm not 100%. It can get hard to keep up with schoolwork, and sometimes teachers and the school are less than accomodating. Last year, my mom wound up paying $300 out of pocket for a math tutor (one of my best subjects) because the school failed to provide a competent one during my several month long absence. I go to a public school, and my mom pays taxes like everyone else- it's my right to have an education from the school (paid for in part by my mother's tax dollars), and sometimes it's hard to get, which is very frustrating.
Kids can also be cruel-- sometimes they call me anorexic and bulimic. Most of the kids in my grade know about my CF, or at least have a general idea that I have some disease, so they are nice, but last year, many upperclassmen were mean to me. I thought by high school they would have grown out of taunting and teasing, but I guess I was mistaken. Those seniors have graduated though, so school has been better this year. Good luck with your paper
 
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NoDayButToday

New member
Manny,
As you probably know because of your cousin, CF doesn't affect the brain, cognitive abilities or the ability to learn. A person with CF is just as able-minded and intelligent as someone without, unless they have another reason not to be (learning disability, cerebral palsy etc). So when I'm in school I have absolutely no trouble at all keeping up, getting good grades and the like. What is hard is when I'm absent for IVs or just because I'm not 100%. It can get hard to keep up with schoolwork, and sometimes teachers and the school are less than accomodating. Last year, my mom wound up paying $300 out of pocket for a math tutor (one of my best subjects) because the school failed to provide a competent one during my several month long absence. I go to a public school, and my mom pays taxes like everyone else- it's my right to have an education from the school (paid for in part by my mother's tax dollars), and sometimes it's hard to get, which is very frustrating.
Kids can also be cruel-- sometimes they call me anorexic and bulimic. Most of the kids in my grade know about my CF, or at least have a general idea that I have some disease, so they are nice, but last year, many upperclassmen were mean to me. I thought by high school they would have grown out of taunting and teasing, but I guess I was mistaken. Those seniors have graduated though, so school has been better this year. Good luck with your paper
 
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anonymous

New member
Hi my name is rachel and i too have cf. i am 17 and live in indiana and i am currently a junior. At my school we have 4 classes that are 1hour and a half long and i only go to three of the classes. i'm supposed to do oxygen 24 hrs. a day but i refuse to do it in the middle of class because kids will always be more worried about me and the hall would be horrible i'm sure i would get pitty looks and i'm sure people would stop me in the hall and ask oh whats wrong and i just don't want that. I do do my oxygen my last block though because i am adaptive p.e. which is a special class for kids with learning disabilites or physical disabilities. I'm not with the class though i sit in the special ed office and write summarys from stupid sports illustrated magazines which doesn't really teah me anything i wish i could take a class that i actually benifit from but indiana law says in public school u have to have three credits of gym even if what you do in gym isn't even considered to be anything like gym (dumb isn't it). I decided to get online today cause i'm out of magazines and i was researching people who have had double lung transplants and stumbeled across your page and decided to write. i am currently on the list for a lung transplant at michigan state university. I am kinda excited because after i get it i will be almost normal but i'm scared because what if i don't make it through the surgery because i mean it's a huge surgery their ripping my lungs out for gosh sake. anyways i was diagnosed also at 3 months cause i had failure to thrive what do you know? I am still very thin and on iv's right now for yet another lung infection as usual i think the mersa's flaring up again or is it the phsudanomous i have no clue how to spell that but it's pronounced sue-ta-nomus.I'm sure u have it we all do. I know what u mean when u said u feel left out i feel that way quite often like when everybody went to homecoming and i couldn't go. i wanted to go so bad but i knew i couldn'r go off my oxygen espically at night cause i get worse at noght(i think it's because i go through school without it most of the day and that adds stress to my lungs). i want a boyfriend so bad i haven't had one since 7th grade it has been 4 years and it is hard. My mom thinks it's because u know how high school guys are they want boobs and i am as flat as a board and very skinny i am 5ft and weigh 85 pounds i did weigh 89 but the lung infections had me loose it because i wasn't eating that well cause i just wasn't hungry i'm sure u know that feeling huh? i started getting really bad like 8th grade i would say. U are just lucky and found a great guy hold on to him he's a diamond in the rough. My doctor never put me on steriods cause she did'nt like the side-affects but another doctor she worked with wanted to put me on them. i did do maygase which is a pill that'
s like a sterios but it's not and it makes u hungry i went allthe way up to 98 poubds with that stuff, but then for some reason it just stopped working on me i was getting som side affects anyways my face got a little puffy and one day when i was in the hospital the doctor who works with my doctor the one who wanted to put me on steriods walked into my room with med students because i go to the university of chicago you get used to all of the medstudents anywayz he pointed to my face and said see how her face is puff that is because of the steriod like side affects of her medicaine i wanted to cry my doctor screamed at him though
wellg2g class is letting out and i have to go to my car
bye i hope i hear from u again my screen name is babygurlreh@aol.com
 
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anonymous

New member
Hi my name is rachel and i too have cf. i am 17 and live in indiana and i am currently a junior. At my school we have 4 classes that are 1hour and a half long and i only go to three of the classes. i'm supposed to do oxygen 24 hrs. a day but i refuse to do it in the middle of class because kids will always be more worried about me and the hall would be horrible i'm sure i would get pitty looks and i'm sure people would stop me in the hall and ask oh whats wrong and i just don't want that. I do do my oxygen my last block though because i am adaptive p.e. which is a special class for kids with learning disabilites or physical disabilities. I'm not with the class though i sit in the special ed office and write summarys from stupid sports illustrated magazines which doesn't really teah me anything i wish i could take a class that i actually benifit from but indiana law says in public school u have to have three credits of gym even if what you do in gym isn't even considered to be anything like gym (dumb isn't it). I decided to get online today cause i'm out of magazines and i was researching people who have had double lung transplants and stumbeled across your page and decided to write. i am currently on the list for a lung transplant at michigan state university. I am kinda excited because after i get it i will be almost normal but i'm scared because what if i don't make it through the surgery because i mean it's a huge surgery their ripping my lungs out for gosh sake. anyways i was diagnosed also at 3 months cause i had failure to thrive what do you know? I am still very thin and on iv's right now for yet another lung infection as usual i think the mersa's flaring up again or is it the phsudanomous i have no clue how to spell that but it's pronounced sue-ta-nomus.I'm sure u have it we all do. I know what u mean when u said u feel left out i feel that way quite often like when everybody went to homecoming and i couldn't go. i wanted to go so bad but i knew i couldn'r go off my oxygen espically at night cause i get worse at noght(i think it's because i go through school without it most of the day and that adds stress to my lungs). i want a boyfriend so bad i haven't had one since 7th grade it has been 4 years and it is hard. My mom thinks it's because u know how high school guys are they want boobs and i am as flat as a board and very skinny i am 5ft and weigh 85 pounds i did weigh 89 but the lung infections had me loose it because i wasn't eating that well cause i just wasn't hungry i'm sure u know that feeling huh? i started getting really bad like 8th grade i would say. U are just lucky and found a great guy hold on to him he's a diamond in the rough. My doctor never put me on steriods cause she did'nt like the side-affects but another doctor she worked with wanted to put me on them. i did do maygase which is a pill that'
s like a sterios but it's not and it makes u hungry i went allthe way up to 98 poubds with that stuff, but then for some reason it just stopped working on me i was getting som side affects anyways my face got a little puffy and one day when i was in the hospital the doctor who works with my doctor the one who wanted to put me on steriods walked into my room with med students because i go to the university of chicago you get used to all of the medstudents anywayz he pointed to my face and said see how her face is puff that is because of the steriod like side affects of her medicaine i wanted to cry my doctor screamed at him though
wellg2g class is letting out and i have to go to my car
bye i hope i hear from u again my screen name is babygurlreh@aol.com
 
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anonymous

New member
my name is tiffany. im 14. i was disagnosed with cf since i was 3 days old. My younger brother also has cf but worser then me.
 
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anonymous

New member
my name is tiffany. im 14. i was disagnosed with cf since i was 3 days old. My younger brother also has cf but worser then me.
 
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angelinwaiting410

New member
I am 18 years old and have cystic fibrosis. my boyfriend, and love of my life is younger than me. we have been together for 3 months and it hasn't been easy. he knows i'm not going to live much longer, and he knows that it's going to get harder. although he doesn't like to think about it, it's in the back of his mind. i'm also pregnant and that scares him. he knows he's going to have to raise our daughter himself. although he his scared he stays right by my side. the best advice i can give you is understand that death is a reality of CF. be there for your boyfriend as much as you can and make his days wonderful. don't be scared.and on the days that he can't live, live for him.

sincerley,
angelinwaiting<img src="i/expressions/heart.gif" border="0">
 
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Jo

New member
saying your not going to live much longer is a terrible attitude to have.. you should always stay positive, your state of mind has a lot to do with your health.. if you have that negative approach you body will too.
 
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Jo

New member
i know. not everyone with CF is going to have a short life. there are more and more people living into there 60's 70's... so i just think its a bad attitude to have saying i know im going to die soon.. no one knows that cf or not...
 
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Emily65Roses

New member
Well that's your opinion. I think each CFer knows their own case better than anyone else, and if that's how she feels, let her feel that way. Everyone has a "bad attitude" about their CF at somepoint or another anyway. But like I said, you can have a positive attitude while still being realistic.
 
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