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Thread: why me?!

  1. #1
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    why me?!

    hi,i'm 16 yr old f w/cf.i have recently been in hospital for a course of antibiotics, i usually go in at most 3 times a year. despite this i still have chest pain, and feel breathless, i have never experianced this when i'm not "rly sick" and i'm a bit freaked out!! my fev1 is currently 39%,it has been like that for a long time, up until recently i thought that this was normal for people w/cf but i now know that it's not, especially since i thought i was really healthy!!i know that on average the fev1 drops about 4% a year and now i'm gettin scared because i always hoped that i would be able 2 live a long and happy life!! you see the thing is unlike a lot of people my age i love life, i appreciate every thing about it and although i know this sounds terrible but i feel very angry towards some people who constantly complain about every thing and who will have the chance to live until they are old and wrinkly!!i just don't know who to talk 2 because i know that my parents would really worry if i told them i was feeling like this and even thought my friends are really supportive about the c/f i don't think it would be right to burden them with my feelings,i don't know what response i'm looking for from anyone out there i just think that i need to let this out!! sorry if i bored anyone! bye Posted by scared on March 03, 2003 at 13:36:26NOTE: this message has been transfered from the old CysticFibrosis.com forums.

  2. #2
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    why me?!

    I understand how u feel...i'm 23 and my lung function is at 36 percent and i still feel somewhat healthy although i do find it harder to do the things i used to but i still try and do as much as i can. I agree with u about other people wining about how hard there life is. It is a big throrn in my sidel. My doc has suggested that i go on a transplant list so that when i ready for transplant i'll be able to recieve one. Your attitude has alot to do with how u feel...i know its hard, i have my days to but if u stay positive it will help alot. I now i'm alittle older then u but i still remember what its like to be a teenager with CF. So if u would like to chat send me a email at [email protected] or on AOL IM Crazycrow2000 Posted by Jessica on March 04, 2003 at 09:49:38NOTE: this message has been transfered from the old CysticFibrosis.com forums.

  3. #3
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    why me?!

    You can l;ive a long life. I felt the same as you and somtimes still do. I too hate it when ppl complain aobut their lives and how "hard" it is for them when they don't know how hard it can get. you know. I knew of this guy who wanted to kill himself because his girlfriend left him and he was perfectly healthy. I wanted to slap him. Anyway the point is we all apreciate life more than others who are "normal" Like Micheal said ask your doctor about lung transplant. You still don't have to tell your family about your feeling just say you are curious. If you want to talk I am here. [email protected] I'm not that old just 20...lol i still remember things...lolTake careAmanda Posted by Amanda on March 03, 2003 at 16:20:08NOTE: this message has been transfered from the old CysticFibrosis.com forums.

  4. #4
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    why me?!

    Hello young person.I really hated to read your post.Your life doesn't have to end shortly.You can still live a long and happy life.I am much older than you with CF.This past December I was very near death when I got the greatest gift I could ever want.I had a double lung transplant on Dec7th,2002.I don't know if you are there yetbut if I were you I would ask my Doctors about it.They have come along ways with lung transplants.There are many Cf'rs who have had lung transplants and are living great lives.You can live till you are old and wrinkly(LOL)Please talk to docs about this ideaand if they think you are a candidate for transplant then get listed ASAP.If you would like to talk more about this there are a few on this website with CF and have had transplants.Joanne,Risa,Ian and I am always around to chat.Hope this helped some,Michael Posted by Michael Adams on March 03, 2003 at 14:19:23NOTE: this message has been transfered from the old CysticFibrosis.com forums.

  5. #5
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    why me?!

    I understand how you feel. I am 43 and have CF. Sometimes I still wonder why people complain in general. I am trying to never compare myself to others as everybody has their own pain. Some people are very selfish and only think of themselves with the little problems they encounter. I get mad too and I am trying to tell myself not to compare myself to weak people. I am very strong and if they had CF they probably would fall apart. Do you ever ask yourself that Question? I wonder if that person could handle CF? It is kind of an empowering statement to me. It makes really appreciate myself and what I have achieved. Even as a child, I had feelngs like you. IT is important to express yourself to someone you trust. It is great that you are able to write here. Maybe you could find a psychologist to talk to? I have found that helpful over the years. People think you need to have something wrong with you if you go see a doctor like this. Frankly, it is those healthy individuals who seek help and mature and grow up healthy mentally and physcially. The mind is very important. There is a mind body connection. When you are happy you might feel healthier and be able to fight off infections. Ever notice when you feel angry how your body feels?I think your numbers are great. Try to stay healthy and keep them up there. A transplant is a great option but you are probably not there yet or else your doctors would have mentioned this to you. In the future if you need one it is important to show that you would want to have one. Many doctors go by attitude and if their patients attitude would be compliant for a transplant. Wiith the right treatments you could not need one for a long time. Just do not let your emotions take you away. Seek help from the right people. Your friends maynot be experienced or be able to understand CF and how it affects your thinking. Maybe when they get to be thirty and have some life to live. A professional is the way to go in my book. A good therapist can get you to think on your own for yourself and you will be much more confident in the end and you will be able to make your own decisions more clearly and know what is best for you.You can email me anytime at [email protected] care of yourselfRisa

  6. #6
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    why me?!

    Hi Scared,Wow, you are such a considerate 16 yr old. Most teenagers don't have the compassion to care what other's might be burdened with, you are truely a gift from GOD. I have a son with CF and he is 8. If my son ever had these feelings I would want him to talk to me. It's very noble of you not to get your parents upset, but you are the one scared and I am sure that they would want to be there to comfort you. Please consider talking to your parents. My prayers are with you brave one. I hope you have a wonderful weekend. Keep your spunky attitude and enjoy life!! Best wishes and prayers!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

  7. #7

    why me?!

    I will be 35 on Wednesday & I have CF. I am a Mom of a 4 3/4 year old daughter. My Mother (moreso than Dad) was always a very emotional person. She worried & thought (still does) the worst of any situation so I learned real quick that I couldnt share MY conerns of CF with her without stressing her out. To this day I hold that against her. I know she didnt mean to push me away or make me feel like I couldnt go to her, but it was very evident. I remember being in the hospital when I was little which was 3 hours away from our home & feeling so alone. I made many friend with staff/patients over the years, but it wasnt the same. Looking back I realize that she was the parent, but I took on the role of it & shouldnt have had to. We have enough emotional trauma & mental torture at times associated with CF. Parents are called parents for a reason & unless you have more of a reason than not wanting to "burden" them than please "burden" them. One thing that you will always be told is ANYONE with a chronic illness needs a support system. If you dont have that, you need to get one. If it turns out that it cant happen with your parents then look elsewhere. Dont fall into the trap that I did. Good Luck!

  8. #8
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    why me?!

    Hi--I havent posted here in a while, this is Patrick from several months ago. I'm 19 w/CF (dx Nov 2001), CFRD (dx TODAY..), asthma, bipolar, blah blah blah not important...anyway...i TOTALLY understand your feelings. I have felt the exact same way, right down to not wanting to talk to my mom. It absolutely infuriates me when I hear someone whine about how sick they are with a cold or flu..I want to just smack them and say at least that only lasts 7-10 days and youre FINE again, try being sick everyday for your whole life. Risa told me a long time ago how important attitude is and I finally have found the attitude I need to feel better. It's so true that if your mind is happy, your body will be too. Like I said, I was diagnosed with CFRD today, but I'm okay with it..its just one of those things. Your mom would want you to talk to her...she may get upset, but it's because you're her baby and she loves you. My mom and I just had this talk last night &lt;grin&gt; Hang in there, and PLEASE feel free to contact me by email at [email protected] or AIM screenname TrumpetEMTB, yahoo paroxysmal_atrial_tachycardia (sorry its so long lol), or MSN messenger, [email protected] (you can also email me there). This goes for everyone. hugs to all who need them

  9. #9
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    why me?!

    Hey! i'm 23 and have a husband and a 1 yr old daughter. I remember thinking the same thing not very long ago. I was watching my friends with CF get sicker and I was in the hospital 4 and 5 times a year, losing weight, feeling sick all the time and very depressed. 2 things for you to think about. 1) Do try to find a psychiatrist, someone to talk to and perhaps meds can really help you 2)For some weird reason, people with CF often experience a decline in their health in the teenage years, but it starts to correct itself in their 20's. I experienced this in my own life. I couldn't see how that was possible when I <i>was</i> a teen, but as I look back, I see how things slowly, but surely have gotten better and continue to. This isn't a pat answer or a cure-all, but if you can you ought to try swimming. Literally, swimmers have the best PFT's of any athletes and it is gentle to your joints and bones. Start small, but it can really help improve what function you have and strengthen your lungs and the rest of your body. Any strength you have will help you fight infections and sustain you until you need a transplant - if you need one. Always be honest with your doctors. Mine care very much about me as a person, not just a patient and when they know I'm scared thay are very helpful. We are such a strong breed that sometimes people don't realize that we need comforting or help unless we reach out and tell them - it isn't easy, but it is healthy.Hang in there. Hepcat<img src="i/expressions/face-icon-small-wink.gif" border="0">

  10. #10
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    why me?!

    Hi I'm Scared.My name is Patty and I am a mother of a 15 year old boy w/cf.I just posted my own question on this site subject: please help!I wish my son would share his feelings with me,even if it was a little.He will not talk to anyone about his feelings.It's like he is angry with the world and I can't get him to open up to me at all.He will not even make friends because he does not want htem to know he has cf and a g'tube.I just think if he would open up to someone it would really help him.I dont know your mom,but I would be willing to guess she wants you to talk to her.Let her be there for you,for the times that you feel no one else understands,A mothers hug is priceless when your feeling your worst.I hope I was some help.If you ever need to vent I'm here. Patty My e-mail address is:[email protected]

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