CF and risky behaviors (and a personal story of my sister)

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crickit715

New member
as the parent of a cf'er i often wonder how to handle the "precautions" vs. "normalicy"......and what ramifications will unfold depending on how i treat the disease. do you feel that the way your parents treated the cf (possibly being overly cautious) contributed to the situation???
 
E

entropy

Guest
@ missT

Thanks for the positive thoughts and prayers. I talk to my mom and dad about these things but my sister was the only one who I could talk to and relate with about one's personal experience of CF... the social aspects like being embarrassed to cough, dreading going to the doctor because we both HATED needles :) , etc. When I do talk to my parents about her death their rhetoric is always from the parent's point of view, which makes sense, but it's still not totally fulfilling as a venting mechanism because they don't experience her death the way I experienced (and still experience) it being her only sibling. Neither of my parents have had a sibling pass away. My best friend in Florida had a brother who died from meningitis at 14. My sister was still alive at the time so I couldn't fully empathize with him... I told him about my sister recently through facebook and he gave me his cell phone and told me to call anytime. I've yet to call him, but I think we met for a reason.

@ LouLou

I'm not sure what gene mutation I have. I'll ask my doctor next time I see him. Are some mutations worse than others?

The time it takes for one to develop an addiction is totally subjective to how one was raised and their state of mind before and after they start using. In my sister's case, she was depressed for many years before she tried drugs. As soon as she discovered she could alter her consciousness with drugs and make herself feel better, the ball started to roll. My sister was a garden-variety addict. She would take whatever drug she could get her hands on. She was never physically addicted to one specific drug or class of drugs... some say that cocaine is physically addictive but I disagree with that. Cocaine/crack is just extremely psychologically addictive. When one stops using cocaine they don't have a physical withdrawal unlike what happens with narcotics. Basically, she was an addict before she ever used drugs, if that makes any sense.

@crickit715

Haha, I like that term. "Cystic Fibrosis-er" :) anyway, I know that my mom's overzealousness contributed to our rebelliousness as teenagers. We were very sheltered as young kids. My parent's divorced when I was 9 and my sister and I lived with my mom in Pennsylvania. My mom was very strict, a disciplinarian, and was very protective of our health to the point of making us feel like "bubble children" in more than one way. At 12 I moved to Florida with my dad, who was the complete opposite parenting wise. He knew how my mom parented us. He thought we would benefit from not having so many restrictions. He didn't FORCE us to do our treatments, he encouraged us to. Even so, his laid back approach to parenting had the opposite effect that he intended. At first everything was fine, but when we hit our teen years we thought we were invincible and started doing what every other non-diseased teen does. My sister just got too caught up in it all.

So, to sum it up, there were many factors in our situation that led to what happened with my sister. We went from a drill sergeant mother to a father who gave us all the freedom we wanted. Really, it was a recipe for disaster. There is a fine line between being too cautious and making your children feel like a freak and giving them all the freedom in the world to screw themselves up when they're too young to know what they're doing to themselves. I'm not a parent, and there is no handbook on parenting as my dad always says, so it's tough to say where to draw the line with these kinds of things. I wish I had more to offer.
 
E

entropy

Guest
@ missT

Thanks for the positive thoughts and prayers. I talk to my mom and dad about these things but my sister was the only one who I could talk to and relate with about one's personal experience of CF... the social aspects like being embarrassed to cough, dreading going to the doctor because we both HATED needles :) , etc. When I do talk to my parents about her death their rhetoric is always from the parent's point of view, which makes sense, but it's still not totally fulfilling as a venting mechanism because they don't experience her death the way I experienced (and still experience) it being her only sibling. Neither of my parents have had a sibling pass away. My best friend in Florida had a brother who died from meningitis at 14. My sister was still alive at the time so I couldn't fully empathize with him... I told him about my sister recently through facebook and he gave me his cell phone and told me to call anytime. I've yet to call him, but I think we met for a reason.

@ LouLou

I'm not sure what gene mutation I have. I'll ask my doctor next time I see him. Are some mutations worse than others?

The time it takes for one to develop an addiction is totally subjective to how one was raised and their state of mind before and after they start using. In my sister's case, she was depressed for many years before she tried drugs. As soon as she discovered she could alter her consciousness with drugs and make herself feel better, the ball started to roll. My sister was a garden-variety addict. She would take whatever drug she could get her hands on. She was never physically addicted to one specific drug or class of drugs... some say that cocaine is physically addictive but I disagree with that. Cocaine/crack is just extremely psychologically addictive. When one stops using cocaine they don't have a physical withdrawal unlike what happens with narcotics. Basically, she was an addict before she ever used drugs, if that makes any sense.

@crickit715

Haha, I like that term. "Cystic Fibrosis-er" :) anyway, I know that my mom's overzealousness contributed to our rebelliousness as teenagers. We were very sheltered as young kids. My parent's divorced when I was 9 and my sister and I lived with my mom in Pennsylvania. My mom was very strict, a disciplinarian, and was very protective of our health to the point of making us feel like "bubble children" in more than one way. At 12 I moved to Florida with my dad, who was the complete opposite parenting wise. He knew how my mom parented us. He thought we would benefit from not having so many restrictions. He didn't FORCE us to do our treatments, he encouraged us to. Even so, his laid back approach to parenting had the opposite effect that he intended. At first everything was fine, but when we hit our teen years we thought we were invincible and started doing what every other non-diseased teen does. My sister just got too caught up in it all.

So, to sum it up, there were many factors in our situation that led to what happened with my sister. We went from a drill sergeant mother to a father who gave us all the freedom we wanted. Really, it was a recipe for disaster. There is a fine line between being too cautious and making your children feel like a freak and giving them all the freedom in the world to screw themselves up when they're too young to know what they're doing to themselves. I'm not a parent, and there is no handbook on parenting as my dad always says, so it's tough to say where to draw the line with these kinds of things. I wish I had more to offer.
 
E

entropy

Guest
@ missT
<br />
<br />Thanks for the positive thoughts and prayers. I talk to my mom and dad about these things but my sister was the only one who I could talk to and relate with about one's personal experience of CF... the social aspects like being embarrassed to cough, dreading going to the doctor because we both HATED needles :) , etc. When I do talk to my parents about her death their rhetoric is always from the parent's point of view, which makes sense, but it's still not totally fulfilling as a venting mechanism because they don't experience her death the way I experienced (and still experience) it being her only sibling. Neither of my parents have had a sibling pass away. My best friend in Florida had a brother who died from meningitis at 14. My sister was still alive at the time so I couldn't fully empathize with him... I told him about my sister recently through facebook and he gave me his cell phone and told me to call anytime. I've yet to call him, but I think we met for a reason.
<br />
<br />@ LouLou
<br />
<br />I'm not sure what gene mutation I have. I'll ask my doctor next time I see him. Are some mutations worse than others?
<br />
<br />The time it takes for one to develop an addiction is totally subjective to how one was raised and their state of mind before and after they start using. In my sister's case, she was depressed for many years before she tried drugs. As soon as she discovered she could alter her consciousness with drugs and make herself feel better, the ball started to roll. My sister was a garden-variety addict. She would take whatever drug she could get her hands on. She was never physically addicted to one specific drug or class of drugs... some say that cocaine is physically addictive but I disagree with that. Cocaine/crack is just extremely psychologically addictive. When one stops using cocaine they don't have a physical withdrawal unlike what happens with narcotics. Basically, she was an addict before she ever used drugs, if that makes any sense.
<br />
<br />@crickit715
<br />
<br />Haha, I like that term. "Cystic Fibrosis-er" :) anyway, I know that my mom's overzealousness contributed to our rebelliousness as teenagers. We were very sheltered as young kids. My parent's divorced when I was 9 and my sister and I lived with my mom in Pennsylvania. My mom was very strict, a disciplinarian, and was very protective of our health to the point of making us feel like "bubble children" in more than one way. At 12 I moved to Florida with my dad, who was the complete opposite parenting wise. He knew how my mom parented us. He thought we would benefit from not having so many restrictions. He didn't FORCE us to do our treatments, he encouraged us to. Even so, his laid back approach to parenting had the opposite effect that he intended. At first everything was fine, but when we hit our teen years we thought we were invincible and started doing what every other non-diseased teen does. My sister just got too caught up in it all.
<br />
<br />So, to sum it up, there were many factors in our situation that led to what happened with my sister. We went from a drill sergeant mother to a father who gave us all the freedom we wanted. Really, it was a recipe for disaster. There is a fine line between being too cautious and making your children feel like a freak and giving them all the freedom in the world to screw themselves up when they're too young to know what they're doing to themselves. I'm not a parent, and there is no handbook on parenting as my dad always says, so it's tough to say where to draw the line with these kinds of things. I wish I had more to offer.
 
G

Gnome

New member
Welcome to our forum. What an incredible story about your sister. I hope for the best for your future.


<div class="FTQUOTE"><begin quote>I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.

</end quote></div>

I agree I miss those days.
 
G

Gnome

New member
Welcome to our forum. What an incredible story about your sister. I hope for the best for your future.


<div class="FTQUOTE"><begin quote>I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.

</end quote>

I agree I miss those days.
 
G

Gnome

New member
Welcome to our forum. What an incredible story about your sister. I hope for the best for your future.
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.
<br />
<br /></end quote>
<br />
<br />I agree I miss those days.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soemtimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soemtimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soemtimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soetimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soetimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
F

falloutboygurl16

New member
that is sooo sad. :/ when i was younger my parents treated me like every other child. i did treatments when i was sick but usually only then. my mom made sure i had taken my enzymes but i just got in the habit of it. i was never embarrassed about my cf either. and now im pretty healthy. soetimes i wish my mom was a little harder on me with treatments but sometimes i read things like this and am glad things worked out how they did. i do my treatments when im sick im still trying to get on a good regimine tho. but all in all im not doing bad. i do things because i WANT to feel better and because i WANT to live. that was my own personal drive. and hearing about my cf friends passing just gives me more strength every day to try and beat this. as well as wanting to be with my boyfriend. i guess in my opinion all you need is personal drive and the help of others who have what you have. to see the ups and downs.
 
M

MaksNana

New member
Dear Entropy,
I am glad and thankful to you that you shared your story. Your story will still cont. and I am so glad you are here. Now, I must say, your picture is a bit spooky. Other than that, I am glad you are here.
I am so sorry you lost your sister. I also love the honesty of you opening your heart. Who knows what in the world what any of us will do in our life time. Your parents could of been the perfect parents and the same outcome with your sister, or vice versa, they could had done everything wrong and maybe your sister would be here. We just don't know. The only thing we know is that she passed away and you are still here.
You sound wise beyoned your years, that's not abnormal with CF people. I am looking forward to hear and read more about you. I hope that if you need help with anything that you will ask and we can help, and I know you can help us.

You don't know me , but , your in my heart,,,,karla<img src="i/expressions/brokenheart.gif" border="0">
 
M

MaksNana

New member
Dear Entropy,
I am glad and thankful to you that you shared your story. Your story will still cont. and I am so glad you are here. Now, I must say, your picture is a bit spooky. Other than that, I am glad you are here.
I am so sorry you lost your sister. I also love the honesty of you opening your heart. Who knows what in the world what any of us will do in our life time. Your parents could of been the perfect parents and the same outcome with your sister, or vice versa, they could had done everything wrong and maybe your sister would be here. We just don't know. The only thing we know is that she passed away and you are still here.
You sound wise beyoned your years, that's not abnormal with CF people. I am looking forward to hear and read more about you. I hope that if you need help with anything that you will ask and we can help, and I know you can help us.

You don't know me , but , your in my heart,,,,karla<img src="i/expressions/brokenheart.gif" border="0">
 
M

MaksNana

New member
Dear Entropy,
<br /> I am glad and thankful to you that you shared your story. Your story will still cont. and I am so glad you are here. Now, I must say, your picture is a bit spooky. Other than that, I am glad you are here.
<br />I am so sorry you lost your sister. I also love the honesty of you opening your heart. Who knows what in the world what any of us will do in our life time. Your parents could of been the perfect parents and the same outcome with your sister, or vice versa, they could had done everything wrong and maybe your sister would be here. We just don't know. The only thing we know is that she passed away and you are still here.
<br />You sound wise beyoned your years, that's not abnormal with CF people. I am looking forward to hear and read more about you. I hope that if you need help with anything that you will ask and we can help, and I know you can help us.
<br />
<br />You don't know me , but , your in my heart,,,,karla<img src="i/expressions/brokenheart.gif" border="0">
 
E

entropy

Guest
@ falloutboygurl16

My mother treated us like "sick children" growing up. Our CF was like the pink elephant in the room. Naturally little kids don't want to feel isolated like that. We put up defense mechanisms and tried to hide our CF to seem more normal because we were always made to feel that we weren't normal. As I get older I despise people who take such lengths to seem "normal." Especially in the media, it's so twisted and backwards. Last time I was in the hospital my room's TV was stuck on MTV. I kept waking up out of sedation in the middle of the night to these twisted reality shows about people that live in Las Vegas or something whose sole purpose in life is seemingly to make others think they're adequate. There I was, intubated, watching a guy with a mohawk have a nervous breakdown over what kind of purse he was going to buy. I was vicariously living life through this program, forced to watch this garbage, too sedated to know how to change the channel. My only emotion was pure disgust. These guys have their health, are blessed with longevity so long as they don't do anything too radical like become addicted to drugs or commit suicide. They take their health for granted and wrap themselves up into this cocoon of artificial happiness derived from meaningless substance like a purse that others like them will envy. I realized that without your health, you have nothing. You're a vegetable, good for nothing, relying on nurses to change your diaper and clean your excrement. The kind of people on those "reality" TV shows don't realize that. Everyone who is born has the burden of losing their health eventually, whether it be from old age or a disease. Only people who die unexpectedly in accidents, like car wrecks and such, bypass this fate. At the end of it all, what do they have? A collection of nice shoes and purses? Do they have a loving family or meaningful friends? While in the hospital, I was alone a lot of the time. My parents work and live hours away from that hospital. Some times I would have a caring nurse who would rub my shoulder or take my hand and talk. I realized that this was what life is about; to be touched, to know someone cares. Empathy, compassion, affection. All of the material possessions in the world mean nothing if you're alone. People lose touch with REALITY. Before all of our modern conveniences and technology all humans had was their family and friends. Society is so backwards now, in the face of all of this "progress" we are becoming more and more isolated, dooming ourselves to an unfulfilling and regretful end. In some ways I'm glad that I have CF. At a young age I have gone through a lot, respectively, and I've been shown things that are supposed to remain hidden until one truly realizes the value of life through time and life experience. People with CF are forced to live their lives faster than the average healthy person.

@ MaksNana

Sorry if you find my picture spooky. The first time I saw this picture it struck me as powerful. For me, it left an impression of angst, rage, and sorrow. I think it's a powerful image, spooky or not :)

My sister was the most gentle soul I've ever met. Only the good or really bad die young, and she truly a good person. I hope that, in some way, her story can help someone in a similar condition realize what harm they're doing to themselves and the pain they will put their family through at the end of it all.

Sorry for such a long rant at the beginning. One thing led to another.
 
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