Hello Morgan, I'm not in your age group,but I'm a mother of a son with CF,he is 22 years old. Oh boy, have I heard all this from him too. He use to be a very angry teenager.And as a mother it really hurts to see your child hurt so bad, and knowing that he is sick because of your genes.But I can honestly say his life "is" worse than yours and you should be very greatful! My son gave up, he figured he was gonna die anyway he wouldn't take his treatments, he drank whiskey all the time, he did EVERY kind of drugs,quit school totaly destroying his self. There was nothing I could say to make a difference. I cried and cried but at the same time I didn't blame him for feeling that way! Honestly I know how I was as a teenager, I would of felt the same.My son is now doing a 17 year sentence in prision, he wants to live now. He wants to be able to walk in the grass, go fishing, get a pounding! The prision has denied his percusion his lungs are so tight feeling he cant hardly walk without resting, it has been almost 2 years since hes had a pounding. They run out of his pacrease all the time ,and hes gone without for 3 days, 5 days, and the longest 9 days.The 9 day stretch he lost 14 pounds!!His stomace hurts him so bad at times he can't get up, but is made to!! He has no choice in it.There is nothing I can do for him now, but cry and cry like I am right now!They are killing him and theres nothing I can do!!!!He now has a hernia from coughing so hard and long,and they won't treat it either. So sweetheart please take care of your self, life is worth it.To make matters worse I live in Florida , his grand-parents live in Florida and he is in prision in Illinois, so you can imagine how many times we can visit him.I would trade places with him if it was at all possible but I can't! I'm broken hearted. Would you like to write him? He loves getting mail, its his only enjoyment now. Skyleen
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I need someone to talk to,in my age group.
- Thread starter anonymous
- Start date
Morgan if you want to hear more about Josh go to adults under "I think I got it right now" its me talking about Josh, I messed up and put it in the wrong place the first time so thats what i ment when i said i think i got it right now . Silly uh? Please reply I want to hear from you ok Skyleen (my name is Eileen and the sky is the limit!)
hey morgan, i am 24 and also have cf/ diabetes. i know exactly how you feel. infact, just resently i was in the hospital. i had gotten really sick back in september, been on home iv's twice in 2 months and still didn't feel any better. i believed that i was dieing and that my doctor didn't know what he was doing. i had gotten myself so depressed that they put me on zolof for depression. of course i stopped taking it after 2 weeks because, like you, i hate having to take pills. and it seems that the doctors only know how to heal by pills. on a good day i take about 20+ pills. anyways, i guess the point i am trying to get at is, i believe that everyone who has cf feels the same way you do at one time or another. of course for me i get like that at least twice a year. i have even thought that dieing would make things better, not that i would actually have the guts to do anything. but it was a thought that passed thru my head from time to time. i have just resently broken up with my boyfriend because i didn't think he saw how serious my diasese was. and i needed someone to be there by my side thru the bad times. so hold on, everything will eventually work out for you. i wish you better luck in your life. and remember there are many other people out there like you.sandy
hello morgan! i am twice your age, but my cousin had cf. i was so close to her, she was 7 when we found out she had cf. she passed away at 16 back in 1991. everyone saw her different from me i am 5 months older than her and i miss her everyday. i would love to chat if feel like it. my e-mail address is antsteddybear2000@yahoo.com OR antsteddybear@aol.com holla back, deborah
knifewieldingmonkey
New member
ummm whats a vest ??
Hi, im sam, and im 15 yrs. old. I dont have CF. I came to this site b/c i chose to right about CF for a science project. i figured this would be a good place to come to find out information. i've read a couple of books about people who have CF, and thats what got me interested in picking this as a topic to do my proejct on. I dont have any friends or relatives that have CF, but when i read the stories that some people wrote about their experiences with it, i felt horrible. Nobody should have to suffer that. My friend, Trevor's little sister has it, she is about 6 yrs. old. im guessing that the worst part about having CF is facing the rejection from people u thought were your friends. Morgan, just to let you know, most relationships dont last too long when your 13, anyways. Trust me i kno. CF is a horrible disease, as all are, but you should never give up hope for a cure. I kno wearing the Vest must be a pain in the ass, but keep in mind that technology has come a long way, allowing u to wear the vest, rather than getting thumps. you can im me anytime at AIM... my sn is shygal101s, just lemme kno u wanna talk about CF, so i kno u arent some stalker or somethin.<img src="i/expressions/brokenheart.gif" border="0">
Hey sweetie, This is Jessica and i have cf... and i was reading one of your notes that you where typing to morgan and i loved it! It makes me want to try harder everyday. But having CF isn't the best thing in world. It's hard and frustrating... when you wanna go do something with your friends and you can't because you have to do your treatments or you miss halloween because your in the hospital and you were supposed to go to a friends party. Im 16 and i was diagnosed with CF 3-4 months old.. they took me away from my mom because they thought she was starving me. Ever since i've had CF i've only had one surgery on my sinuses! And i guess you can say that i don't have it that bad... but right now my doctors are really scared and i've been the hospital more than i've had to before! I wasn't put in the hospital for at least 6 years until around halloween last year... and i've been seeing my doctor's every month to six weeks. I go to the hospital May 5th for a check-up. And if my PFT's are down they will put me in again. And put me on the lung transplant list. I also might have diabetes. They say that with CF that is worse. When im in the hospital i feel like my friends don't care. They really don't pay any attention. And to me i want to to pay attention but i don't want them to feel sorry for me either. I just want them their by my side so I know i have people here for me when im there. I just feel that my friend's don't know what its like having CF and that hurts in the inside. It really does. And not knowing when your CF can just go flat down hill and not being able to save it. The other night I was laying in my bed and i felt this weird feeling my chest and i was soo scared i didn't know what to do or how to react towards it. I've always wanted to meet people that have it so we can at least share what we have in common and so i can get some information about it. I know i can learn a lot from my doctors and all that but i really just want someone who knows what im going through and who understands it... they might understand it but they've never really felt what its like. My friend's not being here for me hurts more than anything in this world. And people writting stuff on the walls about "Jessica can't breath, so take a deep breath." That just makes me want to stop doing the things that i need to be doing and i just want to make it go away. But thats never going to happen. And sometimes i ask my self "Why me?" "Why did this happen to me and not someone else?" "Does anyone else have it... can i meet someone talk to someone...?" Im just so confused and scared. Sometimes i go to bed crying because i see kids with CF that have it ten times worse than me. I never know when it will go down hill or even just break down. Well if you ever have time will you please e-mail me back so we can talk about this. My e-mail is the_only_cutie_4_u@yahoo.com. I would love to hear from you soon but if not i totally understand but i guess i'll talk to you later.*~*~* Jessica *~*~*
Skyleen, Hey, i read about your son. And i feel really really sorry for him. I don't know what it feels like to be a mother of a CF child, but I do have CF and i know how it feels... but not as bad as him. When i read your message about your son i cried. People need to wake up and really realize how important it is. And if he would like to talk to me im here for him... just like anyone else who wants to talk about CF. I am 16 with CF and my name is jessica. E-mail me anytime the_only_cutie_4_u@yahoo.com*~*~* Jessica *~*~*
Diane-I just want to thank you for what you wrote. I am 32 years old and have many, many questions about CF. I am sooo fortunate to have 2 very healthy children. However, I married a man with 4 children and 1 of them has CF. Jessica is 16 years old and she just decided to come to live with us. She has been with us for 6 weeks and there is soooooo much to learn. We saw her on occasion for several years but the miles between us kept that to a minimum. She has decided to live with us permanently due to "issues" at her mother's house. Her dad and I are very glad <img src="i/expressions/face-icon-small-smile.gif" border="0"> Jessica is such a good girl and we love having her here. I just want to learn more about her illness. There are so many medications. There are so many doctor's appt's. There are so many questions. It's very stressful. I actually hate to bitch about how stressful things are when I'm not the one dealing with the disease. It's just all so new to me and my husband. This website has given me so much insight! My husband would love to see this stuff, but it's rare that he is home long enough to do so due to his work schedule. It is very late and I need to get up in a few hours to go to work. Jessica has your e-mail address and we plan on using it! We are getting ready to do a walk for CF on May 15th! I'm just so excited to get her involved in things like this, cuz her mom did not have much time to do it. I hope that we can talk more very soon. I really need to find some support groups for myself, my husband, and my other children! God bless!P.S. Morgan------- I will pray for you! It seems like you're going through a very hard time and I am so sorry! No child should have to feel the way that you do. There is hope. And I hope that you believe in that! God bless and let me know if there is ever anything that I can do! And I know that I
Morgan- I put a P.S. to you in a message to Diane. Look for it.<img src="i/expressions/face-icon-small-blush.gif" border="0"> oops! hit the wrong button! anyways... Morgan, I have tried to type about 15 different things and they all sound stupid. I guess I can't understand what you're going through.....and I never will. I'm so sorry. I will think of you often! Please don't respond with anything hateful! And really, you should watch your mouth. It you were my son I'd have your mouth rinsed out with soap!!! Come on...... you're only 13, dude! What would your mom or dad or guardian say? Don't they visit this website with you???From, The Evil Step-Mother
PJZWIFE4LYFE
New member
My names Felicity and I will be 22 ina few weeks. I have Cf and I was diagnosed when I was 3. Ive been living with it forever! I've never ever been on this site, glad I found it. Its interesting to hear other people wanting to learn about CF, there isnt much talk about it in my family. I have it very midly, I been blessed with that luck!! Only digestive problems rather then respiratory. but being as sick as I have been I dont know which is worse?? All my life we kindof ignored that I had it and didnt even acknowledge that I have been sick becuz of it?? Its strange I guess. If anybody wants to chat or ask me questions, from what I have seen Im the oldest one ont his site so far that actually hass CF herself. Mostly younger teens writing or mothers about their children. Im very interested to talk about what I been thru and what my life may turn out to be thru all this.....God bless y'all and peace out!!Felicity also PJzWife4Lyfe@aol.com
Hello My name is Clarke Johnson i am 33 years old with CF I have also been through a double lung transplant and i have been out for almost 7 years now and doing good. Feel free to ask me any questions about CF i can answer them for. I have been through it all from the ventilator,to all the other problems that you are going to face in your life. Here is my email souixem2@yahoo.com feel to email me about anything that you need to know about CF i will do my best to help answer any questions you have.
Hey, i kinda know how you feel. My aunt died from it, and my little cousin has it. You seem like a cool kid.My name is Crystale and im 16. Im anymic, its when you have low iron and your always pale in the face. Well im sorry I dont have a lot to say but maybe next time ill talk to you longer
purpleangel28282
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hey, my name is Adrienne Nickerson, i am from Nova Scotis, Canada, i am 27 years old and i have CF and i think about everything, i really like to talk to u.
my email is greg.adrienne@ns.sympatico.ca
and i have msn at adriennewickens@hotmail.com
talk to me, i need some one<hr></blockquote>
Hey, if you need someone to talk to your age, go post a new message in the adult forum, there is a much better chance that you'll find someone there that can relate to you a lot better than any teens can. However if you wish to talk to me feel free to email me at purpleangel28282@netscape.net.
my email is greg.adrienne@ns.sympatico.ca
and i have msn at adriennewickens@hotmail.com
talk to me, i need some one<hr></blockquote>
Hey, if you need someone to talk to your age, go post a new message in the adult forum, there is a much better chance that you'll find someone there that can relate to you a lot better than any teens can. However if you wish to talk to me feel free to email me at purpleangel28282@netscape.net.
dear Zoe.
i amsooooo sorry to hear about your brothe, i myself have C.F. i am 13 and going through a very rough year as a matter of fact i just got out of beining in the hospital for a week and a half (today's date 10/01/04) and going home on home i.v.'s and i have been in the hospital about 5-7 other times this year alone and i go home every time on home i.v.'s. I aslo do home i.v..'s only, i did that about 10-12 times this year. But any ways i am so sorry to hear that. if you need any support just write and i'll try and be there.
sincerely, elisabeth
i amsooooo sorry to hear about your brothe, i myself have C.F. i am 13 and going through a very rough year as a matter of fact i just got out of beining in the hospital for a week and a half (today's date 10/01/04) and going home on home i.v.'s and i have been in the hospital about 5-7 other times this year alone and i go home every time on home i.v.'s. I aslo do home i.v..'s only, i did that about 10-12 times this year. But any ways i am so sorry to hear that. if you need any support just write and i'll try and be there.
sincerely, elisabeth