I've been a member of this message board for a long time now. I've read about other people's experiences, some similar to mine, and it makes you feel like you're not alone in this struggle with CF. People are bringing a lot of new information to the table and I'm sure we're all thankful for that, I know I am. I owe it people on here that I ever found out about lots of different supplements like NAC. If you continue to read on, get your coffee, tea, water, whatever you think you'll need, because I'm about to let a few things off my chest that I feel is wrong with a lot of you parents with CF children.
I'm not going to go around and copy and paste the exact words, or names of people that posted whatever it was. One of my first issues to dish out is that a lot of you CF parents are WAY WAY too protective of your kids that have CF. When I was young and I wanted to stay at a friend's house overnight, I knew what medicines I needed and at what times I should do them, because my parents taught me and NEVER treated me like a baby or like I was something special. ALL parents with kids that have CF should be teaching their kids how to care for themselves, and to not rely on other people to do things for them. Instead I read about parents worrying about their kids, trying to teach other parents about all the aspects of CF life, and expecting them to learn everything we know, just so they can care for THEIR child, for ONE night or two. In life, nobody is looking after you...sad, but true. I knew everything I needed to do for myself since around age 4, but I understand not everyone will be able to learn EVERYTHING, because meds change a lot now. But I'd say by age 8, your child should know which medicines they take and at what times, and be able to do them all by themselves.
We have parents that are AFRAID TO LET THEIR KIDS PLAY IN THE GRASS!!! Come on now... how long do expect to be able to keep your kids off of the grass????? (And no, I don't mean the Chronic..lol) So they might get pseudomonas. Do you realize that nearly everyone, CF patient or not, has this bacteria in their lungs? And if they don't already have it, they probably will get it sooner or later anyway?? The difference is that we CF people can't fight it off when it gets to be a problem. You parents baby your children all their lives, and you put it in their heads that just because they have CF, they are special, everyone is going to treat them nicely, care for them, take care of them, look out for them...WRONG. I hear you all complaining about.."Oh, my (CF Kid) said this, and he's acting like a brat, and seems to think that he's special and deserves more attention than the rest of my kids....I THINK IT'S JUST A TRAIT OF ALL CF CHILDREN." HELL NO!!! YOU MADE YOUR KID THAT WAY!! We are not naturally in that state of mind...no way. That's what you get when you treat your kid like he/she is something special. I can't tell you how mad I was when I read that you people actually blame your children's bratty-ness on their having CF. After reading most of what you parents post up, I'm so thankful for how my parents raised me as a PERSON, that HAPPENED to have CF. They would tell me, "Look, you have Cystic Fibrosis. You'll go through this and that, you'll have to do this and that. Realize that this does not make you ANY BETTER than anybody, and it makes you NO LESS than anybody. Live like you're a normal kid, just know what you have to do to maintain yourself, because one day, we might not be here to look after you and the world is mostly cold." They raised me to be responsible for myself and have my health in my own hands...blame nobody but myself for my actions.
I see parents here try to limit their kids' activities and tell them, "No you can't do this or that." Now why in the world would you do that? What you should be telling them is, "Son(or daughter), what you see all these other kids doing, running, jumping, all of that, if you think you can do it, try it. If you try it and don't think you took it very well or need to take it a little easy, its ok for you to sit out if you need to, but atleast you tried it. Don't ever let anyone tell you what you can or can't do, prove it to YOURSELF. We CF people NEED the activity, it's going to help us out a lot in the long run and keep us healthier for longer time. For the love of God, don't put limits on your kids, and sure as hell don't let anyone else do it for you. Let them prove the world around them wrong if they can.
I've only met one other person with CF face to face, and we're really good friends now. We were raised completely different, and we teach each other about one another's experiences. She is so afraid of a lot of things that we with CF are almost SURE to encounter in our lives. She wasn't taught how I was taught at a young age to not be afraid of what is to come. The only thing you can do is LEARN as much as you can about yourself and your condition, and use that knowledge to fight this off for as long as you can. Don't even bother with all that "Your life expectancy is ..... bullshit." (sorry for using that word, I get passionate about things) Depending on how you handle your own, that will tell how long you live for, assuming some freak accident or unforeseen complication arises...so give this CF a good fight. As much as you CF patients put yourselves down saying "Why me?, why do I have to be sick? I don't wanna live with this anymore, its too hard, I don't deserve this...", focus all that anger, depression and whatnot into fighting for your life! Just in 2006, I was hospitalized 6 times, and I did home IV's about 5 times because I would get sick only 2 weeks after getting out of the hospital. This past November was my worst time I have ever ever had. I was about gone. My doctor and the team, they were all talking about that i would need a lung trans. soon. That motivated me to be in a different state of mind. Who are these people to say how long I was going to live? and what I would need? Only God decides when it's your time to go. I'm 5'7", and at that time I weighed about 107lbs. I was pretty bad. I couldn't walk, I was on major oxygen. Thank God with my motivation, I made it out of the hospital in still, pretty bad shape, but my infection was gone. No oxygen. I haven't been back since that, and I am now at my healthiest I, personally have ever been in my post-high school life. I gained around 20 pounds in a month and a half, and have continued to slowly move up over all of this time. I recently started some pretty tough workouts and stretches. If I feel that I can't keep up, I'll slow it down, or take it easier. It's a lot of work, but its going towards a better you, a better quality of life. Show these doctors they DON'T KNOW EVERYTHING ABOUT YOU!!!! I went back a few times for check-ups after my November hospitalization, and the whole team, the doctor, dietician, EVERYONE was amazed to see such a rapid improvement after being at my lowest ever. It was crazy. If, God forbid, something bad were to happen to someone with CF trying to improve themselves in any way, atleast it happened by them TRYING to fight for themselves, instead of letting this damned illness get us first. To this day, I have so many friends that know I have CF (I don't find it hard to come out and talk about it at all, its a part of who we are), and they don't treat me any different other than knowing they shouldn't smoke around me. Some of them still say things like "Oh, Moses? DAMN, I forgot he even had CF." Point-being, its not the first thing they think of when they think of me. CF is PART of you, not WHO YOU ARE.
I don't mean to sound mean when I say this, but hopefully one day when they're old, your CF kids won't have you around, and you will have raised a great, responsible, self-sufficient, thoughtful PERSON, that HAPPENED to have CF. No parent wants to outlive their child.
Ok, I think I'm done.....a lot of these thoughts are unorganized now that I look back to skim through it...but you people are smart and you'll understand.
I'm not going to go around and copy and paste the exact words, or names of people that posted whatever it was. One of my first issues to dish out is that a lot of you CF parents are WAY WAY too protective of your kids that have CF. When I was young and I wanted to stay at a friend's house overnight, I knew what medicines I needed and at what times I should do them, because my parents taught me and NEVER treated me like a baby or like I was something special. ALL parents with kids that have CF should be teaching their kids how to care for themselves, and to not rely on other people to do things for them. Instead I read about parents worrying about their kids, trying to teach other parents about all the aspects of CF life, and expecting them to learn everything we know, just so they can care for THEIR child, for ONE night or two. In life, nobody is looking after you...sad, but true. I knew everything I needed to do for myself since around age 4, but I understand not everyone will be able to learn EVERYTHING, because meds change a lot now. But I'd say by age 8, your child should know which medicines they take and at what times, and be able to do them all by themselves.
We have parents that are AFRAID TO LET THEIR KIDS PLAY IN THE GRASS!!! Come on now... how long do expect to be able to keep your kids off of the grass????? (And no, I don't mean the Chronic..lol) So they might get pseudomonas. Do you realize that nearly everyone, CF patient or not, has this bacteria in their lungs? And if they don't already have it, they probably will get it sooner or later anyway?? The difference is that we CF people can't fight it off when it gets to be a problem. You parents baby your children all their lives, and you put it in their heads that just because they have CF, they are special, everyone is going to treat them nicely, care for them, take care of them, look out for them...WRONG. I hear you all complaining about.."Oh, my (CF Kid) said this, and he's acting like a brat, and seems to think that he's special and deserves more attention than the rest of my kids....I THINK IT'S JUST A TRAIT OF ALL CF CHILDREN." HELL NO!!! YOU MADE YOUR KID THAT WAY!! We are not naturally in that state of mind...no way. That's what you get when you treat your kid like he/she is something special. I can't tell you how mad I was when I read that you people actually blame your children's bratty-ness on their having CF. After reading most of what you parents post up, I'm so thankful for how my parents raised me as a PERSON, that HAPPENED to have CF. They would tell me, "Look, you have Cystic Fibrosis. You'll go through this and that, you'll have to do this and that. Realize that this does not make you ANY BETTER than anybody, and it makes you NO LESS than anybody. Live like you're a normal kid, just know what you have to do to maintain yourself, because one day, we might not be here to look after you and the world is mostly cold." They raised me to be responsible for myself and have my health in my own hands...blame nobody but myself for my actions.
I see parents here try to limit their kids' activities and tell them, "No you can't do this or that." Now why in the world would you do that? What you should be telling them is, "Son(or daughter), what you see all these other kids doing, running, jumping, all of that, if you think you can do it, try it. If you try it and don't think you took it very well or need to take it a little easy, its ok for you to sit out if you need to, but atleast you tried it. Don't ever let anyone tell you what you can or can't do, prove it to YOURSELF. We CF people NEED the activity, it's going to help us out a lot in the long run and keep us healthier for longer time. For the love of God, don't put limits on your kids, and sure as hell don't let anyone else do it for you. Let them prove the world around them wrong if they can.
I've only met one other person with CF face to face, and we're really good friends now. We were raised completely different, and we teach each other about one another's experiences. She is so afraid of a lot of things that we with CF are almost SURE to encounter in our lives. She wasn't taught how I was taught at a young age to not be afraid of what is to come. The only thing you can do is LEARN as much as you can about yourself and your condition, and use that knowledge to fight this off for as long as you can. Don't even bother with all that "Your life expectancy is ..... bullshit." (sorry for using that word, I get passionate about things) Depending on how you handle your own, that will tell how long you live for, assuming some freak accident or unforeseen complication arises...so give this CF a good fight. As much as you CF patients put yourselves down saying "Why me?, why do I have to be sick? I don't wanna live with this anymore, its too hard, I don't deserve this...", focus all that anger, depression and whatnot into fighting for your life! Just in 2006, I was hospitalized 6 times, and I did home IV's about 5 times because I would get sick only 2 weeks after getting out of the hospital. This past November was my worst time I have ever ever had. I was about gone. My doctor and the team, they were all talking about that i would need a lung trans. soon. That motivated me to be in a different state of mind. Who are these people to say how long I was going to live? and what I would need? Only God decides when it's your time to go. I'm 5'7", and at that time I weighed about 107lbs. I was pretty bad. I couldn't walk, I was on major oxygen. Thank God with my motivation, I made it out of the hospital in still, pretty bad shape, but my infection was gone. No oxygen. I haven't been back since that, and I am now at my healthiest I, personally have ever been in my post-high school life. I gained around 20 pounds in a month and a half, and have continued to slowly move up over all of this time. I recently started some pretty tough workouts and stretches. If I feel that I can't keep up, I'll slow it down, or take it easier. It's a lot of work, but its going towards a better you, a better quality of life. Show these doctors they DON'T KNOW EVERYTHING ABOUT YOU!!!! I went back a few times for check-ups after my November hospitalization, and the whole team, the doctor, dietician, EVERYONE was amazed to see such a rapid improvement after being at my lowest ever. It was crazy. If, God forbid, something bad were to happen to someone with CF trying to improve themselves in any way, atleast it happened by them TRYING to fight for themselves, instead of letting this damned illness get us first. To this day, I have so many friends that know I have CF (I don't find it hard to come out and talk about it at all, its a part of who we are), and they don't treat me any different other than knowing they shouldn't smoke around me. Some of them still say things like "Oh, Moses? DAMN, I forgot he even had CF." Point-being, its not the first thing they think of when they think of me. CF is PART of you, not WHO YOU ARE.
I don't mean to sound mean when I say this, but hopefully one day when they're old, your CF kids won't have you around, and you will have raised a great, responsible, self-sufficient, thoughtful PERSON, that HAPPENED to have CF. No parent wants to outlive their child.
Ok, I think I'm done.....a lot of these thoughts are unorganized now that I look back to skim through it...but you people are smart and you'll understand.