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How do you view CF?

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Posted 5/18/2007 10:42 AM (GMT 0)
Just a general question.

I know CF is a big pain in the bum to most people. It's a horrible thing.

I've also noticed over the years though, a lot of people have different views about how they feel about CF.

Some people find it easier than others to cope. A lot have noticed that there mentally stronger than they probably would be without CF, as they have been through so much. Not much normal stuff can even phase them anymore.

I know a lot of parents have such a fear of CF. And I can understand why. Yet, somehow the kids themselves seem to just accept it eventually.

I suppose we're forced to accept it, as if we didn't, we would go insane.

Some of my friends can even point out the good points about CF, although me personally am a bit too negative for that, but I can completely agree when they do make the point about the good things. Still I can't think of them off the top of my head.

So, how do you view CF?

Posted 6/7/2007 3:19 AM (GMT 0)
I am 34 years old with cf, the only good point is Im still here, CF sucks plain and simple, I sure didnt ask for it, neither did any1 else in this forum. So I take my life day by day its all I can do.
Posted 6/14/2007 1:43 AM (GMT 0)
I used to be really depressed about my CF, mostly last year when I kept getting sick and lost my friends. Now however, I've moved on and am learning to just deal with it. Though I can't really say much, my case isn't nearly as bad as most people's. But hey, I think it's so much better to live everyday positively knowing that I am doing everything I can to keep myself healthy. If I (or anyone else) went through life thinking everyday how much it sucks because of cf, all that is going to achieve is to depress ourselves. It's helped a lot being here on the forum and hearing from other people; kinda nice to remind myself that I'm not alone in this, and I always know where to go if I could use some support, or if I just need to vent.

 

Obviously, given the choice I would have cast my vote on the 'no CF please' card, but that's not the case. I've got it, it's not going away, so I'll just have to learn to deal with it in a positive way. Besides, life is always so much better when the glass is half full, isn't it?  

 

Ta ta for now!

Posted 6/14/2007 3:11 PM (GMT 0)

I think this quote sums up how we try to deal with CF...

"Keep your face to the sunshine and
you cannot see the shadows"
Helen Keller

Posted 6/15/2007 11:02 PM (GMT 0)
I didn't even know I had CF until I was 13 years old.  My parents led me to believe that my body was healthy.  I went all over the country when I was young to different hospitals before they diagnosed me (I don't remember any of this).  Then, once I was diagnosed, they said I wouldn't make it past 6 but here I am.  I even stayed at the ronald mc'donald house during all of this chaos.  I have a mutated gene so that I have the disease, genetically, but the only thing really affected are my lungs.  So my view is kind of skewed and honestly, most of the time, I forget I even have it.
Posted 6/18/2007 3:29 PM (GMT 0)
I don't see it as a bad thing..No I didn't ask for it but I also believe that everything happens for a reason...I see it as a blessing from God and part of his plan for me to accept the disease and to help others accept it also. The LORD would never give you any endeavor you couldn't handle!
Posted 6/18/2007 7:47 PM (GMT 0)
As the mother of a child with CF (he is now 25), who was not diagnosed until the age of 16, sometimes I feel really bitter at the slow diagnosis. However, my son has mild CF and, on drugs, can cope with a good job and managing an apartment and just gets on with his life. He never complains - but rather looks upon the illness as though it was doled out to him because he is one who can cope and will be the first to show he can beat it (who am I to take that away from him?). There are plenty of others who can't cope for good reason and so I am so proud of him because of his positive attitude to life. I know that this illness is (as yet) uncurable, but I do think that the love and support of a tight family unit can get people through the blackest times. To all of you out there with CF, please, please talk about it with anyone who will listen, as I have found with my son that this has been extremely cathartic. Maybe I am naive, but I sincerely think that our open-ness in discussing this terrible illness, and our refusal to reject sufferers' futures, has helped enormously. Word tells me that the cure is ever nearer, and I, for one, live for that day. Sometimes you think, is this going to be like the cure for cancer - i.e. never achievable? But I don't dwell on that fact. To all of you out there with CF, you MUST remain positive and although most of you will be in extreme pain for a lot of the time, PLEASE, PLEASE, don't give up. Your loved ones are banking every dollar they have on a cure (or at least some respite), so NEVER give up. I honestly believe that a cure is just around the corner. Think of that every day. I for one will not let this terrible disease consume either my life or my son's. so please hang on in there. I am by no means rich, but every single spare penny I have is given to the CF Trust. I wish all of you who are suffering all the very best wishes in the world, and I really do believe that your release from suffering is not that far away. Take care.
Posted 6/19/2007 4:29 AM (GMT 0)
a blessing from God? I dont think so. I am told that God can do anything, well Im waiting for him to heal me. CF is so rare, I dont know why I had to be born with it. any1 who says its a blessing has no idea what there talking about.

Posted 6/19/2007 6:11 AM (GMT 0)

blackdodge said...
a blessing from God? I dont think so. I am told that God can do anything, well Im waiting for him to heal me. CF is so rare, I dont know why I had to be born with it. any1 who says its a blessing has no idea what there talking about.


Different things affect different people in different ways. What someone might see as a blessing, others could see it as a curse. I'm kind of in the middle; of course I would never have chosen to be born with it, but at the same time, I know that there are so many worse things God could have given me, and for that I'm thankful for my CF. So I do not think icsgeo64 "has no idea what they're talking about." (sorry, I just thought that comment was slightly rude)
Posted 6/20/2007 6:46 AM (GMT 0)
I don't think CF is a blessing from god, but I don't think its a punishment either. I believe it keeps you stronger because you experience alot more hard times than most other people and it also makes you think about more important things in life and the world. But like NeefaFeefa said other people can have alot worse diseases and problems than just Cf. So sometimes that makes me feel guilty when I see other people who are in alot more pain than I am and I keep on complaining about all the treatments I have to do everyday which help me, and that other person may not have all the medicine I do to stay healthy.
Posted 6/20/2007 7:21 AM (GMT 0)
Fire, I couldn't have said it better myself! Yes, living with an ailment like CF definitely makes you stronger. I have been told before that living with lifelong diseases helps a person to grow physically, mentally, and emotionally; I couldn't agree more.
Posted 6/27/2007 7:29 AM (GMT 0)
I stopped moving inside my mothers stomach. They performed a c-section and cut me open 3 times to operate on my bowel obstuction. I died 3 times from numerous problems on the operating table. They had to fly in drugs from France to mix with the most potent in Australia because I was not responding to anything else. This is how I view my life:
CF is never easy. Life for a CF is filled with pain, depression, frustration, anger, sickness and most importantly fear. When CF's read this, they'll say "I handle CF really well, I don't feel depressed or scared" but I guarentee them that one time in their life it will hit them how serious this disease is.
It's not fair starting at school and having to rug up when all the other kids have got on shorts and t-shirts in the windy weather. It's not fair to have to wash your hands after touching things in case you pick up something bacterial. It's not fair you can't play with your friends when they have a common cold. It's not fair you have to take so much medication. It's not fair when you tire out at sports and can't run any further. It's not fair when you have to finish homework that you were never there for when you are in hospital. It's not fair you have to get up early every morning for physiotherapy. It's not fair you're different from your friends because you cough all the time. It's not fair when you can't breathe. It's never fair for a CF.

And when you find out you're on the transplant list, life crashes and burns. You think of your friends and your family. You can't breathe, and it hurts to try.

I have to get on with life. I'm happy and I do all the normal teenager things. I've evaded the transplant list for ages and plan to stay that way. I have so many friends and make the most of life. I never take anything for granted. I've been dating my boyfriend for 3 years now and he's just wonderful, we're moving in together at Christmas. I've found a place I don't ever want to leave, even though I know that I'll have to soon enough. But that's the future, whether near or far, it's going to happen, and I just don't think about it, or talk about it, and neither does he. My little sister also died to Cystic Fibrosis last year when she rejected her transplanted lungs and that left me scared of what CF would do to me. She was just 15, and such a little ray of sunshine. Since her death a new part of me has been revealed. I don't mope around, I competitively run, swim, play hockey, soccor, basketball and volleyball and am always eating healthy and high-fat foods to make sure I am a decent weight. My lungfunction is 109% and I am a healthy weight. The doctors are impressed with my rapid improvement. I have not been hospitalized for 2 years now and I feel better then I ever did before. I refuse to die, because then my sisters death would be for nothing, and I don't want to leave my boyfriend or my family or friends the way she did. I'm living not just for me, but for her.
Posted 6/27/2007 7:38 AM (GMT 0)
Yes, I agree that CF makes you stronger because not only do you value life, you respect it more too and the hardships that come with it. You tend to make deeper friendships and gain more knowledge overall become a changed person. You take nothing for granted and make the most of life, which is what everybody should do.
Yes, I am aware that there are people out there with worst diseases, and it breaks my heart to see that. I donate to every charity that pops up, if they ask for money I donate it because I know what it's like to need the money to find a cure and I very much want them to find a cure to possibly prevent CF in future generations, which I think would be one of the biggest achievements in history.
CF destroys a lot of things, like your lungs and your life. But it gives you lots of things too, like a strong mind, a tough soul, a steely common sense and an unique softness that comes from experience in your heart. Those are some of the most important values a person can have.
Posted 7/11/2007 1:11 AM (GMT 0)
I never asked for this i'm 14 years old yeah and i just learn 2 live wiht it but it does suck some times just wait 4 the sun there is always a towmarrow.:))
Posted 8/15/2007 1:33 PM (GMT 0)
I'm a mother of two my youngest has CF his nearly 2 my daughter untouched and not a carrier. I think when your positive and think in your head all the time 'im well and i will stay healthy' you will, if your attitude is 'im sick and i will be sick forever' you will. our attitude for our baby is positive his healthy and will stay that way and there will be a cure! :-)
Posted 8/16/2007 8:25 PM (GMT 0)

Hello CF Members

All I can say is Wow, you are a wonderful group of people and I see the same theme in all your posts, no one wanted this disease but hey You will do the best you can and deal with it. That is amazing. I do not have CF or a child with CF. I am a Mother however and I had a young, healthy 21 year old son die in a car accident................no one said life is fair, but we are alive and that makes it our job to attempt to live life as well as we can. You are all an inspiration to me.

I am a nurse and have worked with CF patients but I have no idea of what it is like from your side and won't pretend to.

I am just helping cover for Gem as she needs to be off for a short time. Other mods will be by too so if something comes up just shout.

Please email me if you need something. Gentle Hugs.

Kitt

Posted 8/18/2007 6:24 PM (GMT 0)
I agree with above posters, it definitely makes you stronger. It is a pain to deal with all the people who think you're so fantasticly brave for getting through it, but you just deal with it. I'm 13 and by now, it's normal and to be honest, I wouldn't have it any other way. I don't ever give up on anything I really want, and I have a great life. It is sort of a blessing...a mixed blessing, but still. I would be a completely different person without it. So yeah I guess that's how I view CF.
Posted 8/20/2007 1:43 AM (GMT 0)
If I didnt have cf, I wouldnt be the person I am today.
Posted 9/10/2007 10:53 PM (GMT 0)

Hello. I would like to share my view of CF with you. My son was diagnosed at age two, even though I knew something was wrong just after he was born.

I feel that CF is a way of life. My son hates that he is different, and that he cannot spend the nights at his friends house because he has multiple medications. 

He always asks me if he is going to die. My response is always the same..."we are all going to die someday."

I use to think that CF was pretty much an "easy" disease to deal with. I mean, I always thought things would be ok. Lately, the disease has taken more of a front running with our lives and is becoming more of a problem. See my son has lost 20% of his PFT value over the last 6 months. He has been in the hospital 3 times this year and is working on number 4.

For the first time, since his diagnose, I am truely scared of what CF is going to do to my baby. I am actually becoming less head strong and confident that we will be ok. I now know that things are not ok. He is on tobi, xopenex, pulmozyme, hypertonic saline, cipro (antibiotics) three times a day, plus his vitamins, plus his vest and tube feedings (which he is relying on more and more as primary nutrition.) He is coughing more and more each day and running low grade fevers almost every day, if not every other day.

I dont want sympathy, because that makes me think that everyone knows what is going to become of him if no cure or solution is found soon.

Thank you for letting me vent, this is my first time on a support group site...I think I really needed this.

Posted 9/11/2007 1:15 AM (GMT 0)
 Hi, I posted above and would just like to let you know that when I was young-up to age 4-I had so many health problems, I was in and out of the hospital, sounds like your son. However, we switched doctors(I am not saying to do this)and fixed my sinus problems, or at least got them under control(I don't know what your exact problems are but I can tell you alllllllllllllllllll about sinuses :-) )and I haven't been to the hospital since-I'm 13. Many people would say that the treatment-at least one sinus cleanout a year using general anesthesia-is a little extreme, but it's worked for me. If your son seems to have one specific problem, maybe you can isolate it. Don't know if that helps at all but it will get better, doctors are usually smart :-). Good luck!
Posted 9/11/2007 1:28 AM (GMT 0)
My son has a set of freinds that have CF too, the little girl has the sinus problems. She has to clean then out often.

We are switching doctors. After 6 years, I have realized that it is time for a set of fresh eyes to examine him. I am taking him to see Dr. Howenstine down at Riley's in Indianapolis. I really hope she could help him.

He keeps getting pseudomonas infections. I think they are getting harder to get rid of, even with combonation drugs.

Posted 9/11/2007 8:04 AM (GMT 0)
chickadee, you made me cry!  your post really affected me.  Thanks for taking the time to put it up. 

I just wanted to say that lately, I've been thinking (perhaps a bit too much) about my CF and what it means to me.  I'm fairly new to CF - I was only diagnosed about two and a half years ago, and I'm 19.  I've been in a sort of denial about my diagnosis up until this year, and so now I'm trying to get my life into some sort of order.  What I've come to think for now is this: CF terrifies me.  Plain and simple. And it infuriates me to have this fear dwelling inside me and driving me to negative thinking.  I don't like the idea of not being in control.  For me, it's almost as though this is more of a mental thing than anything else.  I hate the uncertainty of it all, but isn't that life for everyone?  No one knows what cards they'll be dealt.  I'm just having a hard time sorting things out, and I wonder if I'm just making things out to seem worse than they are.  Anyway, I haven't got a terrible case of CF, so I'm living as normally as possible, and trying not to dwell on this fear of mine.  At this point I just feel confused, scared, and very much alone on the subject of CF.  Well, those are my thoughts for now.  Thanks to everyone for their posts.  I enjoy reading other CFers' points of view.

-Deirdre.

Post Edited (diddles) : 9/11/2007 2:15:58 AM (GMT-6)

Posted 9/17/2007 10:10 PM (GMT 0)

diddles said...
chickadee, you made me cry!  your post really affected me.  Thanks for taking the time to put it up. 

I just wanted to say that lately, I've been thinking (perhaps a bit too much) about my CF and what it means to me.  I'm fairly new to CF - I was only diagnosed about two and a half years ago, and I'm 19.  I've been in a sort of denial about my diagnosis up until this year, and so now I'm trying to get my life into some sort of order.   

-Deirdre.

Hey Deirdre!

 

My name's Emily, I'm almost 18, and I've known about my CF since I was 2. I was really curious about your life up until you were diagnosed at 16 or 17. If I'm getting too personal then just ignore me. What I wanna know is, what was your life like before you knew about your cf? Were you always sick with stomach problems or some kind of cold, and you just didn't know why? Or did your diagnosis just come outta the blue?  Was your life totally normal and healthy up until those 2 and 1/2 years ago? I'm just curious beciase I know there is no way that I could have gone un-diagnosed for that long, I was always sick as a little kid and there's no way I would have lived this long if I hadn't gotten the help I needed.

...

Ad Chickadee, your post really touched me. Although my CF is not nearly as bad as a lot of other cases, some of the stuff you talked about being unfair I could really relate to. One of my biggest problems is when I'm always coughing and people avoid me like the plague. It especially hurts because I love working with little kids, babies mostly, and parents are always worried about me passing something on. Even when you assure someone your not contagious, they're bound to have doubts when they hear the gurgly coughs.

 
Posted 10/17/2007 7:46 AM (GMT 0)
Hello again, Emily (I just responded to another of your most recent posts)! 

Well... my life before cf.... hm..  I was diagnosed with asthma when I was about six, then it was asthma and allergies.  I've always been a short, skinny little kid, but nothing seemed out of the ordinary aside from my breathing problems - constant coughing; wheezing; shortness of breath - and they were easily associated with having asthma.  I was living quite normally, really...  I never really had any stomach problems; it was all respiratory.  Of course, there was the issue of low weight gain, but I had always been a picky eater, and never ate a lot.  Anyway, I'd been going to an allergist who had me on several different medications, and finally I went in for an appointment and expressed my concern that I might have more than just asthma and allergies.  I wanted to know why it was that I (of all the other kids I knew who had asthma) was the only one who was ALWAYS coughing.  I don't know why it took so long for him to do this, but he finally recommended a pediatrician friend of his to me.  I made an appointment with this guy, and apparently it was so obvious to him that i had cf, he didn't know how I couldn't have been diagnosed earlier.  After this, I went to UCSF for a sinus surgery and was given two sweat tests the day I entered the hospital.  That was all it took to turn my world completely upside down.  So...that's that.  I guess I would just say I was living normally because I never thought twice about my cough or low weight gain - until my junior year of high school. 

Hope I answered your questions.  If you've any more, just let me know.  Sorry it took so long to respond; I obviously don't come on here very often.  my email address is [email protected] for anyone who would like to chat.

Posted 11/10/2007 7:47 AM (GMT 0)

I'm 14, I was diagnosed with cf at 5 months. I cant forget I have it, I have to live with it. I try to take life as it comes, but sometimes I get so depressed. I used to think I was a burden on my family and friends and I thought about taking my life. But music and my best friend, saved my life, and I'm glad they did. I'm planing to become a nurse and life my life as normally as I can. A kid at school told me I was weak because I had Cystic Fibrosis. I didn't cry, (though I felt like busting into tears), I didn't give him the satisfaction of seeing me cry, I stood my ground and held my head high. I looked him square in the eye and said, "I may not be the strongest kid to ever walk the earth, but at least I'm not weak minded" I walked away calmly. It took all I had not to dent his head in, but I was proud of myself for not doing this. He didn't think a little girl like me(I'm only 5'1 and weigh 85 pounds) would stand up to him, the biggest guy in out class. His face was hilarious!

Anyway, I run cross country, sprint in the 100 meter dash in track, and I play point gaurd on my basketball team. I now try to make the most of life and I dont take it for granted. I stand up for what I believe in and those who cant stand up for themselves. CF has made me a stronger, smarter and better person than I would be without it.

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