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Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
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I often get emails asking for my opinion or advice on different topics surrounding the life of a CFer. Most of them I will answer directly and you guys never see them. Once in a while however, I get a question that I believe needs to be answered and addressed by the community. This is one of those times. I received this email yesterday by a high school girl named Abby (I changed her name for privacy sake). I know that many of us have been in this exact same position before and would have killed to hear the advice of other "older and wiser" CFers. I figured that the more insight she had on this particular subject the better. I also have a feeling that there are about 1000 "right" answers out there. Let's come together as a community and help this cyster out! Please read this short email and respond however you see fit. Thank you.
I have one question today.
You've inspired me. I wanna make the change in my life, to not let CF rule who i am, I let it define me and who i am way to often. I just don't know how to become simply "Abby" now that I've always been "Abby with that lung disease" .
Suggestions on how to change it ?
So, what do you guys think? How do you have CF without being CF? Is there a way to be different without being treated differently? I really appreciate you guys taking the time to answer this question!!!
I don't have advice other than listen to this song and have it be your "theme song". Do whatever you can to have this song relay to you. Bomshell "fight like a girl". It has really empowered me.
I'm new here, but saw this question/post and really wanted to answer it :). I TOTALLY agree with having a theme song or matra! I have one, it gives me strength and empowers me when I am feeling weak. My theme song is (All These Things I've Done) by The Killers. It's my whole family's song actually, since I'm not the only one with CF. Anyway, that's just me <3
There are lots of things we "do" in life that require some sort of effort or upkeep, and to some extent all of those things start to "define" us because they take up some of our time, energy, and thoughts every day. The trick is not to let any ONE of these define us. Maybe you're "Abby with that lung disease" but you might also be "Abby who goes to school", "Abby who has the cool job", "Abby who's in that awesome relationship", "Abby who loves to paint/draw/write/read/play baseball/whatever", "Abby the great friend", "Abby with the kick-a** attitude", or a million other things that I'm sure your friends and family could come up with to define you. And all of those things TOGETHER make up "Abby", including that part about the pesky little lung disease.
Yes, CF takes up our time, our energy, and a good deal of our thoughts to plan out how to best live life while managing this disease. But I've known cystics with serious lung disease, on O2 all the time, who still don't let this disease slow them down or define who they are because they know they're MORE than CF. They're STRONGER than CF. Most of all, they're waaaay COOLER than CF. And so, obviously, are you!
Start small and find one thing you're really proud of about yourself: be it your job, your friends, your uncanny ability to be a good listener, your hobbies, whatever. Then every time you start to think about yourself as "Abby with that lung disease" make a conscious choice to replace the statement with "nope, I'm Abby who _____" (insert cool thing here). Once it get's easier try to mix it up and say a new thing every time. You might even learn about whole new parts of your awesome identity you never knew existed!
Best of luck cyster! I already think of you as "Abby with the courage to ask a really great question."
The answer to this question is within your grasp. Push all the CF garbage to the side for just one moment and look at who you are...your interests, opinions, goals, dreams, and relationships with the people who care about you. That what makes you "Abby" and not "Abby with the lung disease." Make those things your focus and add your CF as a small but important piece of who you are . This disease is a part of who we are, but it is not all that we are. Everyday is an opportunity to redefine ourselves. Take that opportunity and run with it! Oh...and take really good care of yourself so you can achieve everything you ever want.
You picked an excellent guy in Ronnie to get the answer to this question. I hope my answer. and everyone elses, will help guide you in the right direction. Peaceful and positive thoughts for you, "Abby".
There are many answers to this question. For the most part I guess I'll be adding to other answers already given because they were stated so well. CF is a part of you, but not you. You can do anything you put your mind to if you really want to. You can be you and also take for of your CF. Think of CF as a Rose. If you don't water it and give it sunlight, then how can it grow and how can it survive? With CF you just have to take care of it the best you can. By execising or doing something you love, maybe dancing or playing a sport. CF doesn't have to be a pain in the butt all the time. I'm not saying it doesn't take control some of the time, but for most of your life you are in control and NOT CF. So my best advice is do your treatments and be physically active.
I have to say what Piper said hits the nail on the head. That is how I live my life every day. I am 42 yrs old now & was diagnosed with CF at 2 days old. When growing up my mom & dad made sure I took my meds & did my breathing treatments but made sure that CF was something I had not what I am. I continue to live by that philosphy to this day. Be who you are not what you have...CF is a part of your life, no denying that BUT it doesnt have to be your life. Do what you need to do to stay as healthy as possible, take your meds, do your treatments but then put that aside & go out & enjoy the day. Piper is right...when you think I'm Abby, the girl with the lung disease....replace that statement with what you are or what you want to be...you define you...CF does not. I know that every day won't be an easy day....believe me I know. But you take those bad days, you deal with them & move on & tell yourself....it will be better tomorrow.
Awesome advice so far! My kids are both younger than you, so I am excited to hear all this great stuff. This reminds me of the time my daughter (5 at the time) looked up at me with her PICC line hanging out of her arm 3 days after she had her tonsils and adnoids removed. She said in her scratchy little voice, "I hate being CF." I took her little face in my hands and said to her, "You are not CF. You have CF, but CF is not you. You are a loving, caring, spunky little girl who loves puppies and loves to give everyone she meets a hug. You are my ray of sunshine. You just happen to have CF, but it will never be who you are." I don't think she understood it all, but she gave me her best smile and then I got one of her world famous hugs. Remember, just because you HAVE CF doesn't mean you ARE CF.
Wow, this is great stuff! It's bringing out this emotional side of me, being a Mommee to a 2-year old little boy who happens to have CF. I agree completely with what Piper said. But I wanted to add one thing that nobody else mentioned. This may or may not be true in your case, but it did come to mind.
Sometimes in our lives it's easy to "be" how others see us. Maybe your family or friends give the impression that they see you first as "Abby, the girl with CF" and then as "Abby, the awesome guitar player (or whatever it may be)". Because you think that's how others see you, that's how you've seen yourself. I know in our situation, it's not uncommon for people to introduce my son as "Sam, the little guy I was telling you about with CF." This is so annoying because I know people are trying to be nice and sensitive, but really, it doesn't matter. I don't want Sam to think that the only thing making him different from others is CF. He can throw or kick a ball better than most kids his age. He is Sam, the boy with the good arm!
Maybe it's time to challenge them (your friends/family/co-workers) to see you as someone who has many other facets besides CF. Don't let other label you with that exclusive "CFer" label.
I hope this helps. Erica, the awesome mommy, formerly know as Erica, the girl with the blonde hair.
Wow...this is amazing stuff! I am the mommy to an 11 month old that just happens to have Cf...I am really trying my best to be the most positive that I can be for her...I really don't have anything to add to these other awesome posts other than just be "You"....like Erica said, don't let anyone label who you are!! I just want to say a special thank you to all of the others that posted before me...it's because of your positive attitudes that people can get thru very trying time!!! Thanks so much!!!
This is a great question and one that many CFers battle daily. I have successfully overcome being defined by CF, and I think it's actually a somewhat simplistic concept. Often we can shape how others see us by shaping the way we see ourselves. For example, if I wanted to start going by the name Ronnie, I could begin introducing myself to people as Ronnie. Eventually, it would catch on and other people would call me Ronnie, too.
I have never used CF as my primary 'definer.' Instead, I have been the dancer, the swimmer, the writer, the actress, etc. I truly believe that if you see yourself as something other than a person with CF, others will see you that way as well. As Piper suggested, start small and focus on some things you enjoy or some of your best attributes.
As you begin to learn more about yourself, you'll find it quite easy to define yourself by something other than CF. Step one is to start with how you view yourself and the rest of it will follow quite easily. Best of luck!
I'm a Mom of 2 CFers and they both are complete opposites in personality and identity. Their names are Bryan 25 and Crystal 22. Bryan has more digestive problems than Crystal has more of both lung and digestive problems and is also Deaf. They both have been a challenge since day one. You see Abby we all have our own personality and identity even with the disease. I just want to tell you that you are a brave person to come online to ask a question like that so you see you are already starting to start small and get away from the identity of having a disease which is a chronic one. Crystal was told if she did not change her ways that she would die in 1 yr to 1 yr 1/2. I saw so much improvement with her that she is still here today. She does her Vest and Medicines every day OH in 2006 in December we found out she has diabetes also and keeps very good control of that too. You see she has struggled to stay alive her whole life and has not stopped her from being herself. I have to say this much when I was doing all the work and doctors hospital stays and whatever I had to do people that I know would ask me how I did this everyday I would say I do it because it comes natural and I love my kids. I understand why God gave them to me because they have been such a blessing and a joy to me.
Thank you to everyone, you all helped, ! extra thank-you to Ronni for putting this on here and letting me bet many different opinions/outlooks on how to change. I am now doing better with being myself and not CF. It no longer defines me. What i now struggle most with is the fact that day by day, i feel the onset of more problems, and pain, those are the day's i just can't push it aside and i have to pay attention to it. I'm telling you my body will not let me forget i have Cf that is for sure. 'cfmomof2" , i want to say that, i understand your daughter Crystal's struggle, i may not be deaf, but i do have lung and digestive problems with my CF AND the diabetes since i was 13 .. i'm close to 15 now. Hearing about your daughter is very encouraging for me, but at the same time it has me thinking " why the hell do i get stuck with the diabetes at such a young age?" i'm not fat, i stand at 5'1 and weigh 105-110 pounds. It's seems so random at the rate which CF effects different individuals. My fingersa re crossed for your daughter to keep doing well ! <3 'Abby' <3 PS Heather Hall, that song really helps me, i listen to it daily to help give myself the confidence to keep going on this fight, thank you thankyou thankyou
Posts
I often get emails asking for my opinion or advice on different topics surrounding the life of a CFer. Most of them I will answer directly and you guys never see them. Once in a while however, I get a question that I believe needs to be answered and addressed by the community. This is one of those times. I received this email yesterday by a high school girl named Abby (I changed her name for privacy sake). I know that many of us have been in this exact same position before and would have killed to hear the advice of other "older and wiser" CFers. I figured that the more insight she had on this particular subject the better. I also have a feeling that there are about 1000 "right" answers out there. Let's come together as a community and help this cyster out! Please read this short email and respond however you see fit. Thank you.
Logging you in...
Heather Ewell Hall · 801 weeks ago
Lindsay Conde · 801 weeks ago
Piper · 801 weeks ago
There are lots of things we "do" in life that require some sort of effort or upkeep, and to some extent all of those things start to "define" us because they take up some of our time, energy, and thoughts every day. The trick is not to let any ONE of these define us. Maybe you're "Abby with that lung disease" but you might also be "Abby who goes to school", "Abby who has the cool job", "Abby who's in that awesome relationship", "Abby who loves to paint/draw/write/read/play baseball/whatever", "Abby the great friend", "Abby with the kick-a** attitude", or a million other things that I'm sure your friends and family could come up with to define you. And all of those things TOGETHER make up "Abby", including that part about the pesky little lung disease.
Yes, CF takes up our time, our energy, and a good deal of our thoughts to plan out how to best live life while managing this disease. But I've known cystics with serious lung disease, on O2 all the time, who still don't let this disease slow them down or define who they are because they know they're MORE than CF. They're STRONGER than CF. Most of all, they're waaaay COOLER than CF. And so, obviously, are you!
Start small and find one thing you're really proud of about yourself: be it your job, your friends, your uncanny ability to be a good listener, your hobbies, whatever. Then every time you start to think about yourself as "Abby with that lung disease" make a conscious choice to replace the statement with "nope, I'm Abby who _____" (insert cool thing here). Once it get's easier try to mix it up and say a new thing every time. You might even learn about whole new parts of your awesome identity you never knew existed!
Best of luck cyster! I already think of you as "Abby with the courage to ask a really great question."
Piper
Josh from Joshland · 801 weeks ago
The answer to this question is within your grasp. Push all the CF garbage to the side for just one moment and look at who you are...your interests, opinions, goals, dreams, and relationships with the people who care about you. That what makes you "Abby" and not "Abby with the lung disease." Make those things your focus and add your CF as a small but important piece of who you are . This disease is a part of who we are, but it is not all that we are. Everyday is an opportunity to redefine ourselves. Take that opportunity and run with it! Oh...and take really good care of yourself so you can achieve everything you ever want.
You picked an excellent guy in Ronnie to get the answer to this question. I hope my answer. and everyone elses, will help guide you in the right direction. Peaceful and positive thoughts for you, "Abby".
Anthony · 801 weeks ago
There are many answers to this question. For the most part I guess I'll be adding to other answers already given because they were stated so well. CF is a part of you, but not you. You can do anything you put your mind to if you really want to. You can be you and also take for of your CF. Think of CF as a Rose. If you don't water it and give it sunlight, then how can it grow and how can it survive? With CF you just have to take care of it the best you can. By execising or doing something you love, maybe dancing or playing a sport. CF doesn't have to be a pain in the butt all the time. I'm not saying it doesn't take control some of the time, but for most of your life you are in control and NOT CF. So my best advice is do your treatments and be physically active.
Jane Aula · 801 weeks ago
I have to say what Piper said hits the nail on the head. That is how I live my life every day. I am 42 yrs old now & was diagnosed with CF at 2 days old. When growing up my mom & dad made sure I took my meds & did my breathing treatments but made sure that CF was something I had not what I am. I continue to live by that philosphy to this day. Be who you are not what you have...CF is a part of your life, no denying that BUT it doesnt have to be your life. Do what you need to do to stay as healthy as possible, take your meds, do your treatments but then put that aside & go out & enjoy the day. Piper is right...when you think I'm Abby, the girl with the lung disease....replace that statement with what you are or what you want to be...you define you...CF does not. I know that every day won't be an easy day....believe me I know. But you take those bad days, you deal with them & move on & tell yourself....it will be better tomorrow.
Suzanne · 801 weeks ago
Erica · 801 weeks ago
Sometimes in our lives it's easy to "be" how others see us. Maybe your family or friends give the impression that they see you first as "Abby, the girl with CF" and then as "Abby, the awesome guitar player (or whatever it may be)". Because you think that's how others see you, that's how you've seen yourself. I know in our situation, it's not uncommon for people to introduce my son as "Sam, the little guy I was telling you about with CF." This is so annoying because I know people are trying to be nice and sensitive, but really, it doesn't matter. I don't want Sam to think that the only thing making him different from others is CF. He can throw or kick a ball better than most kids his age. He is Sam, the boy with the good arm!
Maybe it's time to challenge them (your friends/family/co-workers) to see you as someone who has many other facets besides CF. Don't let other label you with that exclusive "CFer" label.
I hope this helps.
Erica, the awesome mommy, formerly know as Erica, the girl with the blonde hair.
nikki · 801 weeks ago
Drew · 801 weeks ago
I have never used CF as my primary 'definer.' Instead, I have been the dancer, the swimmer, the writer, the actress, etc. I truly believe that if you see yourself as something other than a person with CF, others will see you that way as well. As Piper suggested, start small and focus on some things you enjoy or some of your best attributes.
As you begin to learn more about yourself, you'll find it quite easy to define yourself by something other than CF. Step one is to start with how you view yourself and the rest of it will follow quite easily. Best of luck!
cfmomof2 · 801 weeks ago
I'm a Mom of 2 CFers and they both are complete opposites in personality and identity. Their names are Bryan 25 and Crystal 22. Bryan has more digestive problems than Crystal has more of both lung and digestive problems and is also Deaf. They both have been a challenge since day one. You see Abby we all have our own personality and identity even with the disease. I just want to tell you that you are a brave person to come online to ask a question like that so you see you are already starting to start small and get away from the identity of having a disease which is a chronic one.
Crystal was told if she did not change her ways that she would die in 1 yr to 1 yr 1/2. I saw so much improvement with her that she is still here today. She does her Vest and Medicines every day OH in 2006 in December we found out she has diabetes also and keeps very good control of that too. You see she has struggled to stay alive her whole life and has not stopped her from being herself.
I have to say this much when I was doing all the work and doctors hospital stays and whatever I had to do people that I know would ask me how I did this everyday I would say I do it because it comes natural and I love my kids. I understand why God gave them to me because they have been such a blessing and a joy to me.
"Abby" · 799 weeks ago
'cfmomof2" , i want to say that, i understand your daughter Crystal's struggle, i may not be deaf, but i do have lung and digestive problems with my CF AND the diabetes since i was 13 .. i'm close to 15 now.
Hearing about your daughter is very encouraging for me, but at the same time it has me thinking " why the hell do i get stuck with the diabetes at such a young age?" i'm not fat, i stand at 5'1 and weigh 105-110 pounds. It's seems so random at the rate which CF effects different individuals. My fingersa re crossed for your daughter to keep doing well ! <3
'Abby' <3
PS Heather Hall, that song really helps me, i listen to it daily to help give myself the confidence to keep going on this fight, thank you thankyou thankyou
RunSickboyRun 96p · 799 weeks ago