Fustrating Problems

[anonymous]

Well first of all I am a 21 year old female, with Cystic Fibrosis. I dont have it bad but i just want to inform people it can go from great to horrible over nite. I just think its good for CF people to communicate because you feel more at ease knowing that other people like you are having the same problemes. I just want to mention some of the problems that i go through on a daily basis. maybe some of you can relate to it.- people always asking you.. are u pregnant?, when are you due? man ur fat.. well just to let you know im 5' 97lbs and i take size 3 pants. im not fat.. I think that we get "bloated" because of our digestive problems. - ok parents.. "take you pills" "have you took ur pills yet" "i didnt see you take your pills" "did you have mask" "no you never, i never saw you" I hear this a million times a day. and when im sick they usually say "its your fault u didnt look after your self very good the other day" which i did.. - also we have to eat like pigs. we have to eat alot so we can gain weight because we dont gain weight easy. I eat like 7 meals a day. People are always saying man your a pig how do u stay so skinny?... - conversations i have alot with friends. friends: your caughing alot. do you have a cold?me: I have cystic fibrosis (which i have explained what it is)friends: oh **caugh caugh*friends: man you should go to the doctor your caughing alot todayand just people in general sayin "man your always sick" I tell them i have cf but its like they dont clue in. i am scared about cystic fibrosis because all my life i have been doin excellent. but lately i have be waking up not being able to breath hardly at all it scares me because ive had two cf friends that have died of cystic fibrosis. its scary. also my boyfriend smokes and he has a lung disease and is told that if he dont quit today hes gonna die. but he isnt quiting. i told him that i cant be with him if he continues to smoke because its killing me and him . .i love him to death but i dont want to die or see him die. you would figure he'd look at me and say i dont want to be sick. but i dont know what to do anymore. also my entire family is alcoholics and its passed down to me. alcholisim is a disease all on its own and i cant afford to drink. so i am struggling with that too. I just would like to talk to some people with Cystic Fibrosis. i hope this had helped some people and if you would like to get in contact with me just email me at hotcat82@hotmail.com and enter "cystic fibrosis" as the subject and ill get back to ya in a flash. Thanks for your time. love ya all. good luck in the future<img src="i/expressions/brokenheart.gif" border="0">

 

[anonymous]

Hi, we all go through this because people who don't have the disease will never understand it. However, you have to hang tough and ignore all silly comments which may be frustrating at times. Concerning your boyfriend u have to make him understand that smokin' can kill a CFer. If he doesn't, leave him for a while, by then he'll set his priorities and come back to you. Take care, goodbye. Rami 21w/CF

 

[anonymous]

oh girl, i hear ya <img src="i/expressions/face-icon-small-smile.gif" border="0">i'm a 21 year old woman with CF as well. my parents are pretty much the same about nagging about meds and treatments and whenever i get sick, they make it look like it's my fault, like i didn't do enough. i keep telling them that i do what needs to be done and this is a disease that cannot be cured so i'm bound to get sick even when i take the best care of myself. and the bloating... oh my. i can go from totally flat to six months pregnant in a matter of couple of hours! try wearing low-cut jeans - it's really good. i need to stock up on those <img src="i/expressions/face-icon-small-smile.gif" border="0">as for friends, mine are generally very understanding. they know about CF and what it is. but the new people in my life, with whom i haven't had the "talk" yet can be very insensitive. once i had someone who didn't know yet, tell me "could you please go and choke outside" when i was coughing. later on he apologized and we're friends, but that was really offensive. guys - i don't date people who smoke. because of my CF and because it's plain disgusting to be kissing someone who smells and tastes like a full ashtray. i'm dating a new guy now, he's awesome but he smokes. i told him that's a major problem and explained why. well, he loves me so he's making an effort to quit. so far, 9 days without a ciggy! go sweetie!anyhow, after all of that rambling... the point is, i hear ya, sister <img src="i/expressions/face-icon-small-smile.gif" border="0"> my email is boys_dont_cry_1982@yahoo.com feel free to email me, i'd love to talk <img src="i/expressions/face-icon-small-smile.gif" border="0">Lois, 21, CF, Israel

 

[anonymous]

ah what a great guy to be giving up smoking for ya. thats really sweet, shows he cares.

 

[anonymous]

it is sooooooo nice to hear that you relate to what i said above. you dont even understand. all through elementry school and high school i was made out to be some freak. if people found out i had cf they would say eww gross dont go near her and they would make fun of me when i caughed. so i usually took my pills when no one was around. i wouldnt eat a lot at school and id hold in my caughs till no one was around. I always came home from school telling mom that i didnt want to be a freak any more. it was horrible. I wasnt sick enought to get addmitted in the hospital a lot so i couldnt talk to other cf people about it. but now that im grown its different. people respect that i have cf they help me, make sure i take my meds, make me eat alot hehe, and they even cry when im sick. this is a shock to me because of how people treated me before. but i just want people to know .. when they finally grow up and understand its a great feeling. and to the world.. QUIT SMOKING for your self and other people. you dont want to be responsable for killing other people do you? think everytime you light up around people your killing yourself and them. love ya byes

 

[AbsintheSorrow]

As far as your boyfriend quitting... he should never, in any circumstance, being smoking in your vicinity. I will walk to class, and get sick or get into a coughing fit just because I pass someone on campus who's smoking. Not to mention he shouldn't be smoking anyway. Especially if he's also sick. My boyfriend smoked I think he said, at his worst, a pack and a half a day, and after we got together, he quit. It took a while, and a lot of trouble. He still has a lot of trouble, and it's very difficult for him, as well as for me (though not the same, of course), but he's still doing it. If your boyfriend has any respect for himself, and any love for you, he'll find a way to quit.

 

[anonymous]

Preach on sister! My bf smokes. I throw his ciggs away when he's asleep, it drives him crazy. He never smokes around me. Most towns in Colorado are smoke-free, but if we're in a place that isn't, he goes outside. I HATE getting bloated!!! Especially when my bf trys to initiate sex and I soooo don't feel like it. Sometimes I think he thinks I'm making excuses, but you girls know how hard it is to feel sexy when you look like Santa Claus. I LOVE to eat, but I'm really picky and I don't like to cook. I live by myself, and my bf cooks for me alot, but he doesn't like to wip up all the fancy food I love. I'm in my last semester of school and my dad pays for everything. I get a certian amount of $ every month, and eventhough to anyone else it would be alot, but it's always tight. I don't think anyone really gets how expensive it is to eat all the time, or make co-pays for meds, gas up the car to go to the doc (mine is an hour and a half a way) and buy all that stuff that helps make you feel better. I know college is supposed to be the best time of your life, but I've been hospitalized nine times since I was here, I'm always behind in school work. It's hard to keep my apartment clean, and cook and do meds and go to class and do homework.I'm really stressed out.Debbie22 (for about 11 more hours!) w/ CF

 

[anonymous]

One more thing I HATE going shopping for clothes. I have a really petite frame, yet my tummy is huge, I have no butt, and I'm skinny and short. NOTHING FITS ME!Debbie

 

[anonymous]

i get sooooo frusterated because my friend has cf and she lets people smoke around her and in her car and stuff....and bars dont help either. shes just too embarassed to say whats going on her boyfriend doesnt even know she has it...and she doesnt do her tobis if people are at her house sometimes shell go days without them. shes also very lazy and i feel like she doesnt try to take care of herself what can i do to help her? besides suppport..because support is BS its not elping

 

[anonymous]

my boyfriend has CF and he too gets VERY lazy and un motivated...it makes me angry. we have been dating for 2 years and it took him a whole year before he even told me he had it. tell your friend that it is better if she tells her boyfreind sooner rather then later. most people wont judge. unless they're rude a$$'s <img src="i/expressions/face-icon-small-smile.gif" border="0"> hehe. goodluck. ALSO SMOKING IS HORRIBLE I QUIT SMOKING WHEN MY BOYFRIEND TOLD ME HE HAD IT!!!

 

[anonymous]

hey i talked to my friend and shes going to talk to her boyfriend. we also made a plan that she is going to not let people smoke in her car.