Hey there~ (this is really long but please at leats e-mail me to talk)my name is maddy and im a senior in highschool. I was diagnosed at 3 months old so i've lived with cf my whole life. Up until about 7th grade i seemed like a normal healthy kid with the occasional hospitalization once a year but otherwise i was great. I played soccer since i was 6 until i was about 13, which was a great passion of mine. When i was about 13-14 i began to get really sick and eventually was put on steroids- which turned my life in COMPLETE HELL! I never really knew the extent that my illness could go to before then, i thought the occasional sick times were as bad as it could get, WRONG!!! During my last 2 years of junior high i was pretty much homeschooled cause of the constantly going in the hospital and being sick. The steroids were the only thing keeping me half-way decent i guess u could say, but they were doing much more bad than good. I gained a lot of weight ( i weighed more than i do now), my face was blown up like a balloon and i wasnt the same girl that i used to see in the mirror. My friends and people would always ask what happen to ur face, and i would just tell them it was a reaction to one of my meds. The boys would make fun of me who used to be my friends and stuff. I remember this one saying "oh u ate too much turkey for thanksgiving didnt you!" and i was just totally horrified of what was happening to me. I had a few close friends but i still felt totally alienated from everything. I also got diabetes and kidney stones from the steroids wich resulted in a surgery to extract the stones from my uriter. I was finally taken off the steroids a couples months b4 8th grade graduation, so when i came back i looked pretty normal again. I realized how shallow people can be when i started recieving attention again from a bunch of guys and people were talking to me again. While i was happy i was also appauled that ppl can just be so inconsiderate of others and so self-involved. It was like if u look good then u will receive attention but if u look different u everyone stares. I hated it! Although, it was great to be back w/ all my friends and feel wanted and normal again. I also started going out with this guy like 2 days after graduation, hmmm i wonder why he never payed attention to me b4?!?!?! Anyway, i thought soccer would be an option again and started to try to practice slowly. As i found out it wasnt and i in the winter of freshmen year i got sick again. I started going full-time but then had to switch to half days and the rest was homeschooled. There were times when i was completely depressed in highschool, like how no one seemed to notice that i was sick or they acted like their life was so much worse. I was admmitted to a psychiatric hospital late freshmen year because i was cutting, i would refuse to go to school and threatened to kill myself. I would get so anxious about school and school work and that i wouldnt be able to finish it all and then i would think all my teachers thought i was just a slacker. See i always acheived high grades and my illness and the inadequateness of my guidance counselor was bringing my grades down to D's and C's and that really pissed me off. Because the school couldnt accompany my illness and problems, i had to suffer bad grades even F's. Well, sophmore year came and there were more hospitalizations, a sinus surgery and more home schooling. Junior i tried half days but it didnt work so i was homeschooled permanantly. The fact that i couldnt see my friends on a daily basis made me fall into a depression again and i would never wanna call them on the weekends, i thought why dont they ever call me?! What i learned was that they were scared that i would think they were rude if they all of a sudden just started calling up now. The one positive thing in my life was that i found a boyfriend, he is the first bf ive told about my cf because i feel so comfortable with him and we love each other so much. he has been by my side through sooo much and he knows everything about me, vice versa! He's a year older so hes in college now and im in my senior year. I really would like to talk to other teens about their senior year, cause im homeschooled again and its really hard for me to see my friends alot. i feel so out of the loop and this is supposed to be my damn senior year, the best school year of my life! But i have missed out on sooo much cuz of the cf and shit. I just would really love some one too talk about all the shit that goes on and how to cope with it and just to talk to another CF'er preferably in my posistion! i know my thing was really long but i just wanted u to know the basis of where im coming from. e-mail please at LiLmaDz6@msn.com i would really love to talk to anyone with cf! <img src="i/expressions/face-icon-small-sad.gif" border="0">
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17 yr old female w/ CF needs to talk to other teens!
- Thread starter LiLMadz6
- Start date
Hi Madz..............I don't really know what to say.....I'm an Aussie and I've lived with cystic fibrosis always, but, i think i have only recently begun to actually realise that its a serious condition. You see, other than my yearly check-ups, i have never once been hospitalised. Apparently CF cases are catagorised into groups depending on severity and i am in the "mild" group. I get a chest infection once every few months, take a few anti-biodics and am fine within 2 weeks. Honestly, I am so rarely sick that most of the time, even I forget that there is anything different about me. And I have always thought that...well....that I would live til i was old just like any other person. I happened to see an episode of 7th Heaven the other day where the little girl had a friend who had CF and they talked baout how the average life expectancy of ppl with CF is 30......... THIS TOTALLY FREAKED ME OUT! i had never known that.....like....really! I am always so well and have never stopped to think that maybe i will get really sick and just...die one day. (shit, i hope none of this is upsetting YOU...)so yeah i looked it up on the net and sure enough, it says everywhere that the average is 32 years old! i just refuse to believe that! the thought of life ending at 30 honestly makes me feel sick. Do you think this is true? even for CF sufferer's who are well most of the time????I cannot seem to find any older people who have CF to talk to about it. And THAT scares me.... cos it makes me think that everyone really does die at 30......I'm sorry.... maybe i shouldnt send this, but i will. For the first time EVER..... i am scared about the disease that it doesnt seem i have.... I dont wanna die....until im an old grandmother.Hope no one thinks I am an ass for writing this.Anthea. <img src="i/expressions/brokenheart.gif" border="0">
hey, i have also had cf and i have asthma all my life, iwas first diagnosed w/ it @ age 8 which i guess was pretty lucky, but a few years ago i was hospilized every time i just got like a common cold or the flu or something i would be in the hospital on oxygen, and iv antibotics for days than i would go home also w/ a iv for 3 weeks!!i would get sick all the time and last year i missed 40 days of skool which was really bad luckly i made up all my homework,tests so i luckily passed. i got that 3-4 times each year for about 3 years when i was 11-14 was the worse times in my life! i would normally go to school but sometimes i was just way to tired to go i have no engery being up w/ the iv all night n i would be out 4 weeks at a time. and when i would go to school like every1 felt really bad for me.. n it jus made me feel worse when i got there sympathy i didn't need it i jus wanted to live my life to the best that i could. and no matter what happened. i have a g/f that i have been w/ for 8 months and he's always been there 4 me like my 6-8th grade class new wut i had but didn't no that much about it. he has always been @ my side. i used to play bolleyball,cross country, cheerleading,basketball,soccer, track like everything but my fav is v-ball so im doing that for a while, well i hoped this has helped! -Meagan
Maddy, Sweetheart, don't dispare, and please don't feel alone. CF is very scary at times, and when it's not scary, it's still there. I'm turning 23 next month and graduating from college this semester. I never thought I'd get this far, and now that I'm here I know that I've got alot more ahead. It all sucks, there's just no other way to say it, the hospital, the meds, loosing weight, loosing sleep, dealing with school...it blows. But you really are going to come out more mature and wise. Please e-mail me for some girl talk.dncox3@comcast.netDebbie22 yr old w/ CF. CFRD
Hey Maddy,My name is Kayla Whitley. I have CF too. I hate It! I want it to go away, but I can't. I'm glade I'm not the only one with it. I live in Carlinville IL. No one but me has it. I feel alone some times. What about you? It just takes up so much time. I would give you my e-mail address. But, unfornatly, only my parents have a computer and I just keep on forgetting it. (Sorry about my spelling. I'm not that good at it.)Thanks,Kayla Whitley
Anthea, I wanted to respond to your message about life expectancy being around 30 and your fear of this.... and also your realizing that cf is a serious condition. I am 39 years old with cf, diabetes, and b.cepacia. I was healthy like you all my life till i was in my late 20's. Once i got b.cepacia i came to realize just how much this illness can take out of you. From what i can see, the best thing you can do to make sure you arent going in the wrong direction with cf is prevention. Take as good a care of yourself as you possibly can. Do what your doctor advises, and learn as much about the illness as you possiby can. That life expectancy is just a statistical number. When i was a teen the life expectancy then ,was in the teens. It goes up every year, and as you get older it will keep going up. There are people out there in their late 60's and older with cf. I recently heard of a guy who was 79! Nothing is impossible and the good news is that there is more information out there now a days about cf and new treatments on the way. Keep yourself well and your spirits up. all is not as bad as it may look
HI my name is stephanie and my dad ran a camp for cystic fibrosis a while back until they got shut down for parents complaining about how the kids there were wasting their life! bogus right? lol my sister and cousins had the experience of attending the camp even thought they didnt have cf and got to learn about it and have fun with all the kids im kinda jealous lol so if u can give me some information on cf i would love it! well thanks! gotta aim sn mines fairytasta89
HI my name is stephanie and my dad ran a camp for cystic fibrosis a while back until they got shut down for parents complaining about how the kids there were wasting their life! bogus right? lol my sister and cousins had the experience of attending the camp even thought they didnt have cf and got to learn about it and have fun with all the kids im kinda jealous lol so if u can give me some information on cf i would love it! well thanks! gotta aim? sn mines fairytasta89
HI my name is stephanie and my dad ran a camp for cystic fibrosis a while back until they got shut down for parents complaining about how the kids there were wasting their life! bogus right? lol my sister and cousins had the experience of attending the camp even thought they didnt have cf and got to learn about it and have fun with all the kids im kinda jealous lol so if u can give me some information on cf i would love it! well thanks! gotta aim? sn mines fairytasta89
Hi Stephanie,I think what your dad did was great! I never got the opportunity to go to a camp as a kid...I wish I could have. I definitely dont believe a child is wasting their life by going to a camp...there are so many great things to learn...not to mention meeting great friends! Anyway, I'm 30 yrs old and have CF....is kind of hard to just "tell" you about CF...if you would give more specifics on what you would like to know...I would be more than happy to answer! Take Care...Dea
Hi Steph, I got to go to a CF camp when I was a kid and I think that it's great that your dad did that. But I just thought I'd let you know that Cf patiens have to minimize their time around eachother because we can spread bacteria to one another. The camp I went to every summer for a few days was run by my CF clinic and was ended because psudomonous had been recognized as a problem fro CF. A communal living situation is not a good idea for CFers.Debbie 22 yr old w/ CF
hey maddy I just wanted to say im just learning aboubt cystic fibrosis. I heard about in my class and on TV. I just want to say that i hope that you live your life and dont think as yourself as sick. I also want to tell you that god will be with you throughout your life. I hope you get through this. I will be praying for you. <img src="i/expressions/present.gif" border="0">
Hi, Maddy--I was diagnosed w/ CF at 2 weeks, 'cause my sister had a bad case, so they tested the other 4 of us siblings. When I was 6, my sister died (she was 14), and I remember praying nightly to God to "not let me die young" as my sister had. I'd always been told that few people w/ CF lived beyond their late teens or twenties, and somehow I got the age 35 stuck in my mind, that I would never reach that age, never fall in love, or get married, or have a family, or anything! I didn't totally realize it then, but I was a little healthier than a lot of the kids I knew w/ CF, and I wasn't hospitalized at all until I turned 14. While I was maybe better off than other kids w/ CF, I was still miserable in the "regular" world, because I had very few friends, I was teased ALL THE TIME for being skinny, for my cough, for being out of school due to illness, for having to "bundle up" in cold weather to avoid getting sick, etc. You name it, I got shit for it. I was a wall-flower, never had a boyfriend, never went to Prom, got invited to very few parties. And yet, when I went to CF camp, I had the time of my life, and lots of popular friends, so I knew it wasn't me, it was the rest of the mean "normal" people who were the cruel ones! I had a penpal w/ CF who had the same problem, being teased all the time, being depressed, suicidal, etc. We used to promise each other that we'd "go together," but in the end, she took her own life, "without even waiting for me," or telling me she was ready to kill herself. I went on living, struggling with the sadness, the bad grades, the loneliness, the illnesses. I was hospitalized with bad infections & coughing up blood twice a year, every year of high school. At graduation there was a nice guy who did ask me out, but I got sick & ended up in the hospital again, & then I was so scared that he'd find out "what was wrong with me," that I had my MOTHER (do you believe it? How embarrassing!) tell him the next time he called, that I was out-of-town, like permanently or something! I felt bad about it, but I really didn't know what having a boyfriend was like, & I was afraid I wouldn't know how to act or be! I'd hated school so much, I was glad it was over and I was away from all those jerks! It was like a fresh start for me. I decided I was going to try to get a job (though few of my friends w/CF could work, I apparently was healthy enough for an easy fast-food job). I did, & I was excited that none of these people knew I had CF & wouldn't be able to criticize me for it. Soon, I was assistant manager, but guess what? I still got teased (for being skinny, for coughing, etc.) but now, I was their BOSS, & it didn't bother me as much, because I knew people often complain about their bosses, anyway!! Because I had so much more to prove than anybody else, I worked harder than everyone else, and although I still got sick occasionally, I'd finally proven my value, & that was my best source of self-confidence! Eventually, my doctors started me on a different, stronger enzyme, and I began to gain weight. That somehow seemed to turn my life around. After years of lung infections, going from 105 lbs. to 90lbs. in a few days from coughing & throwing up, and needing to be rehydrated & "cleaned out" in the hospital for two weeks, the hospitalizations suddenly stopped. I still got sick as usual, but I had more weight on me & more to "fall back on" when I got sick, and got over the infections with just oral antibiotics. My point in all this is, if you can just hang in there, something just might come along like it did with me, just in time to make your health & your life better. My life has not become perfect; I still face depression & loneliness, but as people mature, they don't tease relentlessly like they did as children, and surprisingly, it doesn't hurt as much! You eventually realize how proud you should be of yourself that you deal with this disease and its challenges every day, because that's something those people would NEVER have the strength to do! They really are the weaklings, and one day they WILL realize that, and feel bad about it---I've seen it happen already!! You need to give yourself time to find what you're good at & enjoy doing in life, in spite of CF, and can be proud of. The truth is, it took me a lonnnnnggg time, many years, and a lot of struggle & unhappiness in between, but I finally started dating years later (after unwillingly rejecting that first guy) and built a decent career, and now I'm finally married to a loving, generous man! As a kid, I NEVER thought I'd live to experience ANY of those things--I was so sure CF would stop me, and I wouldn't live past 35. Well, the truth I haven't mentioned until now, is that I'll be 39 in August, I seem to be somehow HEALTHIER than I was in my teens, and unbelievably, I'm actually a little overweight instead of thin. It's unbelievable to me that I have a whole different set of problems added to the CF stuff I'm used to, to deal with now. I still feel mentally youthfu, like I'm 19 or 20, but my body is showing its age. I'm Diabetic, too, but still on oral meds., and the Dr. says I'll be on insulin in a few years. I'm not obese or anything, but the 30 pounds I've put on in the last few years (maybe due to the Diabetes, depression, inactivity, whatever) makes exercise & breathing more difficult, and to have spent my entire life wishing not to be skinny, and to now have the opposite happen, is so strange I'm not sure how to deal with it! Now, instead of being self-conscious about being too skinny, it's depression over having a fat face or belly or a cellulite butt! In all, I hope you can see how much things can change for us, a little for the better, a little not for the better; but the longer you can hang around & stick it out, the more chance you have to see what can happen in the future. I've been to psychologists & psychiatrists periodically for continued depression throughout my life, for a lot of different reasons, but believe it or not, few of them are at all related to my CF! I did have one psychiatrist with whom I wanted to be totally honest, so I told her all I could about my thoughts, my family, my social life, my job, & my physical condition. I was actually shocked and pissed off when she took all that I told her and summed it up as being because I had a chronic illness! I stopped seeing her immediately, because my life & my problems are so much more than just about CF. There are troubles that everyone deals with, without even having CF. As you get older, you experience so many different things outside of CF, and it changes your perspective. I learned a good lesson from knowing a friend I met at CF camp. She didn't have CF, her younger sister did. Both girls were VERY pretty and popular--- (I've changed their names for privacy) my friend Karly a healthy, artistic brunette, Tiffany (mild CF) a blonde, & a cheerleader/gymnast. They were everything I felt I was not, & I thought that meant they had it all going on, and had perfectly happy lives. I came to find out that Karly had been seeing a psychiatrist for emotional problems for many years, and I realized that no matter how perfect a person's life may seem to someone else, everyone has their own type of problems, and they're just as bad to them as ours are to us! Ultimately, I know you're looking for a way to cope, and all I can offer is that it helped me a lot to have other friends w/ CF to talk to, and to have goals to fight for to give me a reason to keep going! I hope you have or can get all of these things, and enough health to stay around until things get better! Catnip@wrighthobbies.com
This is a response for Anthea. First of all, let's get one thing straight. On the websites you talk about where they say the life expectancy is 30, they say that the MEDIAN life expectancy is 30, not the mean or average. Just a quick math lesson here. Median means the middle number; that means there are just as many people over 30 as below. You should place no limitations on yourself! I know someone and have heard of plenty of others who are in their forties, fifties, and sixties. But don't dwell on a number. Just keep taking care of yourself and planning for a future. There's no reason not to !!!
Hey Maddy, I've had CF since the day I was born. I'm 19 years old. Which my mom sees as a miracle considering that I was only supposed to live till I was 18. We've all been told that. CF pisses me off too. Especially since it messes with my attending college. I get sick all the time too. Two weeks before I graduated from highschool I though I was going to die. I was coughing,and hacking so bad I was turning purple due to lack of oxygen and that was with O2. I survived and Now I'm going to college to oneday become a lawyer if CF doesn't get kill me first. If you want to talk to someone else with CF here's your invitation. You can email me at CS420Soldier@aol.com. Oh yea, Hope your having a wonderful senior year.
hi my name is jerry. I am 18 and my older sister has CF. she's had CF all her life and she's been through hell. She was in chorus and was not really an active person. I've always tryed to get her to do things with me but she was always sick. I never realized that CF was that bad intill her and my mom moved to GA. I'm living in pa and pretty far away from her. I talk to her on the phone an she's always telling me how good she is or how bad she is. Lately she's been really bad and she has to get a double lung transplant. Its really scary becasue she is always saying how she might die out of nowhere. And me being so far away hurts. I know i am not the one with CF and has to be in the hospital but my sister and I were always close and when she's in it hurts as if i was in there.See she didn't play soccer or anything like that because the doctors said she couldn't do anything like that and i always thought we couldn't play out in the yard because it would kill her. But know that i am older i realized that we could live a life like other kids did and have a good time but its to late now, she's so affraid to do anything becasue one of her last friends with cf died hey was fine like she was and no he's gone like that and it hurt me to see all these ppl on here talking about them dying. You guess on here need to livin up alittle bit and enjoy ur lifes like everyone else its not always when am i going to die. Its when am i going to get up and have a life like everyone else. I've seen so many patients with cf that sit around the hos[ital and do nothing and thats whats killing u its not the desease its ur mind thought. I wish i was a doctor or something so i can find a cure for Cf and be able to fix everyone but its up to everyone of u guys when u feel down think of something that will get ur hopes up iof u need a friend my hand is always out for someone to grab. God bless everyone of you. If u want to reply to this or have any questions or even someone to talk to plz e-mail me or find me on yahoo messenger and tell me my sn is tiny_20045@yahoo.com don't be affraid to ask me anything