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I hide mii feelings about Cf cause I want everyone to think Im strong but deep down I am scared!!

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Posted 1/29/2008 8:13 AM (GMT 0)
My name is Sheana. I just turned 19 sunday. I have been living with Cystic Fibrosis my entire life. but lately I have been so scared.. I try to make everyone think I am soo strong && that I can deal with it but I cant I really cant.. It tears me up inside everyday at the fact that I could go to sleep one day and not wake up.. I know everyone dies but that is not what I am scared about I am scared for mii family. They mean the world to specially my grandma who raised me my entire life!! I have her to thank for living this long!! I already lost my bestfriend to this stupid disease and I dont want my family to lose me from it.. I am very torn to peices by this I could use some support advice anything.. please!!
Posted 1/29/2008 2:37 PM (GMT 0)
Hiya Sheana,

My name is Gemma, I'm 21 and live in the UK.

Cf is a very difficult disease too deal with. I'm the same, I put up a front to everyone, so noone can see what I'm feeling. Obviously, I don't want anyone too feel the way I do, so generally try too hide it. When I do let people in, I get some pretty shocked responses. There is one single person who can see through my fake smile, and that's my psychiatrist. It's the only reason, I now won't let go and move too a councillor in my town. Everyone else, just thinks I'm doing fine. I plaster myself in makeup, s noone can tell when I'm feeling ill.

A lot of people think of CF, think of people they know who have it, then think-well actually they don't seem that bad. But, inside it can be eating away at us. Everyone I know with CF put on the same front-the one that's always smiling.

I also am scared more about my family than anything else when I die. I already have plans for a happy kind of funeral, because I really don't want anyone too be sad. That's what gets too me more-worrying that people will be sad, and honestly it's the only thing that keeps me fighting.

I'm scared of getting worse though, again not the dying part, it's the feeling worse and worse and being alive, but wheel chair bound, or on Oxygen. That's what scares me. I've had my glimpse of that, and I'm really scared, for when it happens big time. So scared that I can't go without treatment, or anything else going wrong, or I just panic.

Keep talking huni, and know there will always be support here. (although perhaps a little less when the hospital steal me-but there's another 3 months till then anyway.)

I hope you are well
Gem
Posted 2/8/2008 3:45 AM (GMT 0)
hello.  my name's deirdre.  i'm nineteen, as well, soon to be twenty.  i'm not sure what to say, because i feel like no matter what i say it won't really help.  all i know for sure is, yes this is a very scary disease, and i can whole-heartedly sympathize with your fears.  I was diagnosed just about three years ago and i'm still coming to terms with what cf really means in my life.  i've been going through a lot of stressful moments just in thinking about what will become of me and the fact that i don't want this burden.  it feels a bit hopeless desperately wishing for a cure, or wishing i didn't have this, so i'm trying to live my life the way it should be lived - happily and freely.  it's hard looking for the positive when you've got a solid negative following you around, but it's all you can do to keep from sinking into a gloom.  it might help a lot if you let out your emotions with friends and family.  Let them know how you feel, especially your fears about possibly leaving them.  they may not know how to respond, but it's probably more important that you simply let out this monster that's tearing you up inside.  it's so important to let them know how much you love them, and for you to hear how much they love you in return.  i understand you want to appear strong, but it's only making you weaker holding in your pain.  let it out, deal with the pain of your fears (journaling or letting out a good cry always helps), and then be able to put that pain aside so it doesn't control your life.  i want you to know that it's ok to cry; it does not make you a weak person.  if you like, feel free to email me: [email protected]  hope this helps.
Posted 3/6/2008 3:15 AM (GMT 0)
Hey,I live in canada. I'm turning 21 in a couple monthes. I totally understand how you feel. I'm terrified too. everyone i knew with cf that was my age group has passed on, and it weighs on my mind everyday. I've become really depressed, I drink alot and I'm unmotivated in life because I dont want to fail. I want to have a normal life like everyone else, I want to have children and watch my grandchildren grow up. I'm really at a loss on how to deal with everything. I cant give you advice but I can tell you, your not alone.
much love
Alex
Posted 2/11/2009 2:14 AM (GMT 0)
Hey Sheana, I know it gets scary but you have to live the best you can.

My name is Laura I am 30 years old and I have a 10 year old son who is healthy

You have to forget your sick and just live happy and focus on fun and friends. As you get older it stays in your mind more often since your not alway so busy with school and hanging out with friend. I have lived a strong and happy life I worked full time once my son was in school and when I turned 29 I moved out with my boyfriend and son and stopped working, then I had to have cleanouts more often and unfortunatly now as of a few months ago I got nemonia and am now on oxygen. I guess my point is just stay busy and continue with life and when these things happen you have to try and find ways and reasons to put up the fight, it's worth it!! even if you sometimes forget..

I don't know anyone else with CF, so if anyone wants to email

chat later, Lau

Posted 4/11/2009 4:08 PM (GMT 0)
Hello Sheana. I just want to let you know that CF is very, very hard to deal with. Although i dont have CF, my best friend passed away in January this year at 18 years old. All you have to do is think of the brighter things in life and that you have an amazing family who all love you. Focus on being happy and making the most out of any time your given with family, friends etc. My friend Kelly was very poorly with CF though. She was on permanent oxygen and was unable to come out of hospital for around 9 months. She got out for around 48 hours in 8 or 9 months. She had stared death in the face twice but she managed to defeat it and she was a very strong girl. But she didnt realise it. You dont realise how strong you really are hun. Until something comes and slaps you in the face and it makes you realise you can really do this. I hope all is well and you will lead a long and happy life. All my love x
Posted 8/7/2009 1:31 AM (GMT 0)
hey sheana, im 17 and will be turning 18 soon and i get so scared sometimes, i want to go and live on a college campus but i dont know if i would beable to. ive recently been talking about a lung transplant with my docs and that scares me alot too. i never really let my family see me when i get overwellmed with the feelings. i also have bipoler disorder so it kinda doesnt help with the feelings. i never knew that other cf patients felt the same way. its nice to know that im not alone.
Posted 8/7/2009 5:49 AM (GMT 0)
Hey Sheana!

My name is Emily, I live in Washington, USA, and I am also 19, (almost 20!). When I was diagnosed at 2, the docs told my parents that I might not make it to my teens. They were wrong though, and now, almost 18 years later I'm alive and kickin! Each year has been a blessing for me.

But at the same time, as each year passes, I worry more. I notice little changes, like how I've been getting sick way more often and how a common cold has me down and out for much longer than it should, and I'm less active because of it. When I was younger, I could almost ignore the existance of my CF because it really didn't affect me in my life excep for taking meds. But this year I was in the hospital just in April for the very first time since I was diagnosed with an infection when I was 2. I think that really made me see the potential seriousness of my illness, because I was so sick that when I took a PFT test, my smaller airways were only functioning at 7%...it really shook up my doctors.

I have been worrying a lot lately. Most of my worries come with my future: Pathetically enough, I find myself afraid to get into relationships, and to have kids, because all I can think of is that I might leave my partner at only 40 years old, or I may never see my kids grow up, or any grandchildren. I get scared that I'm being unfair to any potential spouse because of the problems with my illness and the shorter lifespan. I try to be strong in front of my family though, because I know that they worry, so I don't want to worry them with my own issues. It's always been really hard never having friends with CF. I always feel like I'm in my own little bubble because I'm always kept so far away from oother CFer's where I live. It is sad and lonely, and while I do have friends, none of them can ever truly understand.

So Sheana, I know exactly how you feel.

 [email protected]

 

Posted 8/7/2009 5:57 AM (GMT 0)
well, I don't think there is anything I can say that will make you feel better, so let me just say, you are not alone! my name is Jenna, and I am 22 years old and have lost 4 close friends to this hell-ish diease. I often think of the pain that has caused me and can't stand the thought that one day all of my family and friends will feel the same way when they lose me. when I was your age I was determined never to get married or in a serius relationship because I didn't want to inflict CF on anyone else, it was bad enough that it ruined my life, killed my friends and made my family watch. yet somehow 2 years ago I fell in love. after the third time I tried to break up with him he told me that that wasn't up to me, that he was a grown up who could take his own risk and he has decided that I am worth any risk. he told me that even if we only get another 6 months with me it would be worth all the pain. and the people who love you will feel the same! of all of the friends I have lost to CF I would not change having known them for anything. the pain I felt at losing them only verifyes how much I cared for them. the most you can do for your family and your friends is to keep taking your meds and doing your treatments as best you can, keep yourself as strong as possable. there are always new medications comming out, and a few that should help very much that might be avalable in the next few year. just keep yourself as strong as you can untill then, always fight to stay alive to the next medical breakthrough, thats all any of us can do. insted of thinking of the pain you could cause your family if you die, try thinking of the joy your bringing them being alive, every treatment you do, every green glob you cough up, and ever pill you swallow is keeping you alive another day for them.
Posted 8/12/2009 8:17 AM (GMT 0)
Hello Sheana,  My name is Melanie and I'm 30 years old with CF and I darn proud of it!  Yes, there was a time in life that I was scared and afraid and not too sure what to think, but as I strived and accomplished my life goals and still continue to set new goals things have changed.  I'v become less worried and more focused on moving forward in life and with this illness you have to be focused and strong.  However,  you are right at times you might not feel well, but you still put on that smile face so others don't become down too.  This is a battle that we fight on a regular basis, but I feel God only gives us what we can handle and people with CF are strong individuals and are fighters!  At this point too, I know I have beat the odds because when I was born my life expectancy was 18 years old and here I am 30!!  I even have a few other CF friends who are 40 and 53 years old how about that?! cool    So, I know its a battle and we need to take it easy and a day at a time sometimes especially on our off days with how we feel.  I can relate to how you feel your not alone.  Let me know any updates here on the site, Melanie
Posted 8/30/2009 3:03 PM (GMT 0)
CF is a very scarey illness.  I too hid it for many years, people would ask, I would say "I have allergies". 
At the end of high school, I came to my senses and said "I have it, I will let others know.".  I did and so glad I was able to do it.  I discovered others who had family members with CF, or knew someone.

I am not sure what is so embarrassing about it. The cough? The poop? Well everyone coughs and poops.  Taking meds was hard for me.  Embaressed.  I did not like my thin frame and also that I had no boobs.  All things that are important to a person at those teen year and young adult.

I survived it!!!  And survive I have done.   I am now 46.  My sister who has CF was 10 years older than me. 

I had a double lung transplant in 1997.  12 years of life has been so wonderful.  I can enjoy my family, they can enjoy me.

Lung transplant is not for everyone, and often when you don't need it, you say to yourself "I will not do that.  A person who died, and I got their lungs. Weird"

But I would say the majority of us will get them.  I read all the posts and realized that most of you all think about "the end".  How and when will it happen.  Very normal feelings. Talking about death is an important topic that everyone in our society should do with more ease.  In the USA we are not good about talking about our own future death, or the death of loved ones.

Going into transplant is a long process, and I hope your doctors are on the ball enough to mention it when you are in need.  I actually have encountered a couple doctors who refused to bring the topic up, because either their own fears, or they don't believe in it.  Ethically, that is not what a doctor should be doing.

I would suggest just bringing it up with your CF doctor. See what they say.  Remember, they are not the ones to decide if you will get on the waiting list.  It is a lung transplant team, at a lung transplant hospital.  I think there are about 100 centers in the USA now. 

Much has changed with the whole lung transplant surgery, the meds, the rules of life after since I got my transplant.

So just step forward and say the words to your CF team, and talk about it with your family as well.  Organ donation is still not something that many do not know much about.  It is a wonderful step to take when a loved one is brain dead.  Knowing your families wishes of donating or not, is important to know for each family member.

My sister Mary Lou had her double lung transplant in 2001.  She for some awful reason got ovarian cancer 4 years later and thank goodness it was a rare and fast type of cancer and she did not have to suffer long.  I miss her so much. We could talk about CF lungs, and then transplanted lungs and we knew what the other one felt.

If you like to email me anytime.  Please do.

[email protected]

I also have a web site and chat room for lung illness and lung transplant that you are more than welcome to check out. I am just growing the site, as MSN shut down the old site I  had and there were 1500 members.

Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill

...Edited to remove links...

Post Edited By Moderator (Darkies Gem) : 9/1/2009 3:40:43 PM (GMT-6)

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