I need someone to talk to,in my age group.

[anonymous]

YO to everyone who reads this,

My name is Morgan,I am a 13 year old white male from North Carolina and I have Cystic Fibrosis-Delta 508. Meaning I have CF in my lungs and stomach. I was diagnosed with CF at either 6 months or a year old if I remember right,at 3 years old I had to get my stomach wrapped. I have to take Enzymes,Vest,Treatments,go into the hospital. I have had...9 or 10 sinus surgeries and have been admitted over 100 times in my life. I'm reaching a point though to where I am getting tired of it all,tired of taking medicine! I mean,life stinks most of the time. Yo,listen,I have had -4- girlfriends in my life and they all dumped me,can you guess why? IF you guessed CF you are correct! BUt I currently have a girlfriend who accepts me for it but she has never seen me do my vest and stuff,and its hard. It's just hard livin with this,stressin all the time wether you gonna kill over or your lungs start bleedin and you gotta get a lung transplant and I am asking,it would be really really great if someone could please email me at crazycracker937117@yahoo.com and talk to me,in my age group like 13-16 whatever,I just need someone to talk to. I have only met 2 people in my many hospital stays and in my life that has CF so it would be nice to talk to someone else. Please if any will,Email me and lets talk,thanks for your time,PEACE OUT YA"LL!
Morgan

 

[anonymous]

Hy, I do not have Cystic Fibrosis, but I have done a lot of research on it. I know a couple of people who are diagnosed. I did a documentry on it last year, and met a young women who has it. It really touched my heart. I went to the walk, and some events. I would love to listen to you if you are willing to talk. frostybubbles14@netscape.net

 

[anonymous]

Hi, You sound very angry and bitter. I do not have CF myself but I know that I was very upset when my daughter was diagnosed. I hope that you are able to find someone to talk to but I also think you should consider counseling. There is nothing wrong with needing someone to talk to. I hope that whoever you talk to, counselor or friend, that they are able to change your thoughts. You are 13 years old and have had 4 girlfriends which I think is a lot for your age. I think it is unfair to say that they dumped you because of your CF. Try reading your posting again and you may see that it was very negative, and that may be having an impact on your relationships. You are only 13 and relationships aren't usually life long at that age anyways. Try talking to an adult that can help you get through this. Maybe your CF clinic can set you up with another CF patient, try talking to your clinic nurse. Life has so much to offer and you can't blame CF for everything that happens to you. You have CF and it is a part of you, but you are so much more than that. Life is what you make it and if you think there is no more to life than your illness then that is what you get. Only you can make a difference.Here is something that may help you (take the time to read it and understand it)"Welcome to Holland"by Emily Pearl Kingsley"I am often asked to describe the experience of raising a child with a disability. To try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo, David, gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland." "HOLLAND?!" you ask. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy." There has been a change in the flight plan. They have landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. Learn a whole new language. You will meet a whole new group of people you would never otherwise have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. However, after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt. But everyone you know is busy coming and going from Italy, and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that is where I was supposed to go, that is what I had planned." And the pain of that will never, ever go away because the loss of that dream is a very significant loss. However, if you spend your life mourning the fact that you didn't get to Italy, You may never be free to enjoy the very special, the very lovely things about Holland.

 

[anonymous]

You're obviously a mother of a child with CF, and someone who sounds very wise and loving. My daughter is 19 and is dating the most wonderful young man who is 21 and has CF. His case is very very mild. She and I are trying very hard to educate ourselves so that we can be who we need to be for him. Any advice would be greatly appreciated. You can e-mail me at tdconway@knology.net<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Hey,This is Morgan again

And to the woman/guy who said I was bitter,I don't give a darn! You ain't live with this stuff,you ain't know what its like so don't start preaching to me about seeing someone about it! NO ONE,unless they have CF knows whats its like,to be looked at like a freak from your friends and stuff. AND NO,bitterness is not what ruined my r elationships with girls or hurt it, so don't give me that. Like I said,you ain't know what its like. You think your wise about the discease do you? You think you know alot? YOU DON'T KNOW ANYTHING until your laying in a hospital bed and the doctors are saying your going to die! You don't live this,you never have and you never will,so don't give me that! To everyone who says I need help,and who don't understand the pain CF kids go through! This is Morgan,i'm out!

 

[anonymous]

Hey how u doin Morgan, not 2 good i guess. Im doin a project on CYSTIC FIBROSIS and one of my best friends has it, Im 16 an av known him since he was bout 11. At first i dnt even no he had it, it woz only a few yearz lata dat he told me, its the hardest thing that he's eva had 2 deal with and so its hard for me bein his mate. I no i kan neva compare to what u have but i think i've had a glimpse. Hey, jst coz u got it it dnt mean dat ur a freak, evreybody has sumink wrong wit dem, only diffrece is urs is a hell ova lot harder to cope with' ppl jst dnt understand and so choose to distance themselves, their the freaks for not being big enough to understand.Wana reply www.bloicesan@tritontec.com

 

[anonymous]

Morgan, I am sorry if I offended you. No I do not know what it is like to have CF but I do know what it is like to see a child in pain. It is not easy for me to sit by and watch my daughter suffer either. If you are looking for someone to talk to then go to your CF clinic nurse and ask for someone. Maybe you do need to talk to someone that has been through it all and survived. I hope you get through this and I will be thinking about you.

 

[anonymous]

Hey Morgan,I wasn't going to reply because I am not your age but I thought that I should anyway. I am 21 with cf. I still remember what its like to be that age and everyone ignore the fact that your sick. Then they get offended if you don't call and make sure their ok when they stay home with a cold or cramps. Why the heck should I when they don't call me when I am in the hospital or at home with ivs. Just because I do ivs at home doesn't mean i'm not sick. So I know what your going through. You feel totally alone. People who are "normal" seem to ignore you and pretend to care. (i am not talking family guys i am talking school people). People who say they are your "friends" but don't give a damn unless you can do something for them. Its no right but its high school and unfortunatly people like that never grow up. I will tell you from my experience that I didn't have many friends in high school or even dated. I think mainly for my cf and shyness. But now that i am a bit older i don't care because I see that I couldn't stand to be around those kids then. They were so self involved and a broken nail was more important to them, all it was was vainity and how popular they can be and how to get popular. I know it hurts now to be alone and girls leave you but in the end it might be better. You have experience with dating so don't let that stop you from ever dating again, dating is a way to single out the one you really like anyway, the one that makes it all worth it. Friends come and go but the best friends last for ever. Corny yes but its true. And to find that one best friend may take a while. So jsut because these people piss you off don't try to single yourself out, try to ignore it if you can, enjoy junior high and high school as much as you can. Be a teenager thats what your supposed to do. Although cf makes us grow up fast it doesn't mean we have to act like 40 yr olds all the time. If you ever need to talk or vent rant and rave whatever email me at akcooper_01@hotmail.com I may be older but i know what your going through dude.Amanda

 

[anonymous]

Hi, my name's Zoe and i lost my borther to Cystic Fibrosis and it really hurt me. I was only in grade 2 so Morgan I know what you have to live with. I loved my brother sooooooo much and he died when he was 14. It really sucks. I know someone else who had Cystic Fibrosis and he lived to be 35 but he died during the Christmas holidays. hopefully, you have an eventful life because you never know when that horrible day will come. I sure didn't. Hopefully you will live to be very old and have a good life. Please reply to this,anyone cause i'm REALLY upset right now.

 

[anonymous]

Morgan,My name is tera and i am 17 years old living with severe cystic fibrosis. i go through the exact same thing as you do. i even had to change schools because i felt that everyone treated me differently because of the disease. it sucks so much to wake up every morning coughing and struggling for breath. I don't know how sick you are but my FEV! is only 20 and my FVC is 40. I have been sick this whole year and completley mised out on my senior year. you feel so alone, isolated, and you know other kids have cystic fibrosis but you feel like they dont have it near as bad as you do. i'm sorry to hear yoiu've had troubles with friends and girlfriends. i am lucky to say that i have always has a huge huge huge circle of friends that love and adore me and are there when im sick but there are also times where i just want to hit them. especially when they call me bc of someone said this about them and you know im sittin on the other line with an iv and oxygen hooked up to me barely able to walk to the bathroom. it sucks so much and its so hard but if your close friends ever alienate you or do anything like that ,thats when you need to say hey wake up and explain to them how sick you are and thelast thing you wanna do is hear about their patheic what they think horrible life. i hate so much when someone tries to tell me there life sucks. im just like hey look dont evcen fucking tell me what ur life is like. i just want them to live a day in my life. and about your girlfriends.. if they cant except you for who you are then they arent worth it anyways. your young and you'll find that one that loves you for you.<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[LiLMadz6]

Hey Morgan~My name is maddy Im 17 almost 18 and i have CF. I know exactly how you feel about all the issues you expressed in your e-mail. I was diagnosed at 3 months and i have CF pretty severly, i mean i am in the hospital about 5-15 times a year, ive had about 8 sinus surgeries over the years, im constantly doing all my treatments and vest, Ive had to have surgery for kidney stones caused from the damn steroids, i have diabetes, i was just put on the lung transplant list last summer and im home-schooled and dont really get to see my friends on a daily basis. I know you might think that would be cool cause then you dont have to see everyone and have to go to school everyday but in reality i wish it wasnt like this. Since people dont see me everyday they think im really sick and are afraid to call me on the weekends and shit. Im always the one that has to make the effort and call them. Lately i've been seeing my friends every friday for the school bball games and its nice to KINDA feel in the loop but i still feel out of it cause everyones likes "oh hey, where've u been how are you" and the most dreaded "oh we gotta do something, ill call u next weekend" and they NEVER do and i know they dont intend to. I know part of it is that they think ill be mad that oh they're just starting to call me now why didnt they call before but it still hurts. Its really nice that i found this place that i can vent to others my age with CF and i really do know what youre going through and fuckin hard it is. Its like everyone acts like they understand what youre going thru but they have NO FUCKIN CLUE!!!! and you really do wish they could walk a day in your shoes and see that their life is NOTHING compared to ours. I agree with you that talking to somebody that doesnt have CF doesnt make sense and have experienced it personally with a handful of psychologists and psychiatrists who deal with kids with long term illnesses and shit but i mean sometimes its the only way to vent that shit out. I know right now i really dont like my psychologist (im also forced to see her for being on the transplant list) but sometimes when i do get comfortable talking with her it feels good to tell her my family and friend and CF probs cause sometimes she gives me good ways to deal with the shit that life gives. Im not saying all the time, cause sometimes she just makes me want to scream but its nice to get it out. I really do also think its about finding the right person to talk to cause you dont always mesh well with every psych. you're put with. But maybe just talking to kids around your age who have CF might make u feel better just knowing that we understand pretty much all the shit u go thru since we do it too. About your girlfriends, i know u've heard it before but ur still young to find the right one but then again u may find her tomrow too. U never know when and girls ur age may also be too young right now to understand or may be scared and thats not their fault. I met my boyfriend just over a year and a half ago and he was the first one i told about my CF. I really felt that he loved me and i loved him and i didnt know how he'd take it but i was ready to risk it cause i knew he was right for me. Im glad your current gf has accepted u for u and if she knows about your CF then slowly start showing her how u do your treatments and vest and im sure she wont be turned away by those facts, i mean she already knows that u have CF there shouldnt be a reason for her to think differently of u just cause u do those things too. I know its hard having gf's or boyfriends in my case through junior high and high school cause it is hard to explain your hospitalizations and shit to them and friends. im real tired but i would really like to talk to u again.<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[LiLMadz6]

<b>Text</b>Hey this is for Tera~I am also 17 and a senior with CF and would really like to talk to you or e-mail you. My e-mail is LiLmaDz6@msn.com ~ please e-mail me, i think we have a lot in common and a lot to talk about!Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Diane]

Hi Morgan, I am definitely not in your age range but i figured id write to you anyway. My name is Diane and i am 39 years old with cystic fibrosis, Diabetes and b.cepacia. When i was your age i felt exactly the way you do . I hated taking my medicines and all that stuff, and certainly didnt expect to live even past my teens. I've had some bumps along the way......sinus surgery, 2 pulmonary embolizations due to large amounts of hemoptysis( that i thought for sure was the end). We never really know what our time limit is on this earth, and yes some of us suffer more than others. Gosh i know how annyoing that is to hear people bitch about some "terrible" problem they are going thru that we cf'ers would GLADLY take on as our only problem. I am surprised that at 13 you have had 4 girlfriends already. You are doing much better than most guys in your age range. I dont think you should be looking to have a serious forever lasting relationship at your age, because that rarely happens so young. I guess it isnt impossible, but you will probably meet a lot more girls you ill be interested in later on. If your past girlfriends left you because of your cf, then they didnt deserve a great guy like you anyway. You have gone thru a lot i can see, from your letter. Don't let cf take from you what you dont want to give. Fight this illness with everything you've got. Try hard to keep a positive attitude, and dont let anyone steer you towards negative thinking. Theres one good thing about being your age with cf....You are young enough to benefit from all the research that is going on right now for new treatments. If you need to vent, i'm always here....jinxnick@aol.com ~ Diane

 

[anonymous]

Morgan, I'm turning 23 next month, but I totally understand. You have a unique opprotunity to really LIVE your life. There's a saying in Taoism, "One disease, long life. No disease, short life"It means that people who know of their disease, live accorningly. They care for their body, mind and spirit, They live to the fullest, they are loving and respectful. The result is a long and happy life. They know of their body's limitations, and have cause for celebration when they exceed them.Those who are clueless about their bodys live like idiots, and end up cutting their life short and generally being dickheads because they have no empathy for others. Feel free to express all you thoughts and feelings here. Even if you just want to chew out everyone around you. This is a place where people know what you're talking about, and get it.Debbie22 yr old w/ CF

 

[anonymous]

Hi Debbie..good outlook on life..I feel the same...Eddie 26 real good health due to spirituality..my email - edwardgray617@hotmail.com

 

[anonymous]

Hey, im a 15 year old male living in Seattle, Washington. I was diagnosed with CF at 2 and a half months on May 1, 1989. I have been hospitalized many times also but ive gotten over it, its just another thing you put up to experience. You got to take what life throws your way no matter how bad it is. Hell, CF is supposed to be a lung disease but i play sports i do whatever i want and i do my best. I run a 5:21 mile and play soccer on a team year round. Lifes hard and, ive gone through the whole nine yards; hospitalizations, needles, medicines, pills (i take 30 a day now) and i just press on. Whenever i get down or pissed i just think, would i rather be dead?, never, hell no, even if its it not the best life is my life so im taking full advantage of it. Morgan; i do feel you man i really do, i know what you've been through and are going through but if you think that your lifes not worth living then you really do need some help man. Live life for what it is cause thats all you got, you have to learn how to enjoy what you have been given in life thats all nothing more. I'll be in touch man, and everyone just try and be happier. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Morgan. A little advice I got from my Mom...Shut up and deal with it....Accept it and move on...Quit crying because no matter how bad you got it someone else is worse off....Stop cursing you sound like an idiot....Bty the way I have CF and I just live my life

 

[anonymous]

Hi Morgan, my name is Amanda and I feel terrible that you feel the way you do. My boyfrien is 33 and he has CF, I don't have it so I have no clue what it is like to be you or have the disease. I do know what a positive attitude can do for you. Shane (my boyfriend) has a great attitude and that has helped keep him healthy. He told me on our first date about his CF. I didn't run because I didn't know anything about the disease. When I started researching everything I could about the disease I got scared but thought that everyone deserves to be loved no matter what their problems are. You are never guaranteed a lifespan. I could be in an accident or get cancer, I could die well before him and he still loves me. You will find a person who will accept your disease and will help you fight CF. You can beat the odds as long as you are willing to fight. I can't imagine being your age and dealing with everything you have to, I admire you for everything you have gone through. You will become a very strong person for everything that you have had to deal with. Good luck with your future and the perfect girl is out there somewhere for you.

 

[AbsintheSorrow]

You're right, there is always someone worse off, but sometimes it's hard for people. No matter what some patients say, everyone gets sick and tired of it. And sometimes just needs to bitch about it. Plus he's 13, he's just starting to realize some girls will treat him differently because he's sick. I'm generally a "good" person, and just live my life as I wish. I've still had moments, days, weeks where I felt that bitter, and wanted to just go out into the streets and scream until my voice was gone. Give the kid a break.

 

[AbsintheSorrow]

PS--- Believe it or not, but some people are shallow enough to avoid CFers. I'm 20, and have been dating for what? 6 years? I've had guys interested... find out I'm sick, and then suddenly have some lame excuse to avoid me. There are good people who accept you too... but coming across people like that does happen. And sometimes we are avoided by the opposite gender simply because we're ill. Some people are just... sheep.