Just a maggie story

P

PedsNP2007

New member
WOW! That's so great that she is not afraid to be open about having cf, taking pills, etc. I think it reflects on her upbringing and that you are not afraid of sharing her CF with others. If parents are ashamed of it and hide it, the kids pick up that fear and shame and it reflects in their actions (hiding or not taking pills, fighting therapies if they want to play with friends).

I remember those days where you weren't worried what others thought about you. I remember having to go home after school and waiting my turn (i had 2 other cf siblings) to have my mom do hand cpt. After I was done, I could run outside all evening with my friends -- best chest physiotherapy ever!!!! (that was before homework in schools became 3 hours a night!) My friends never cared about seeing me get pounded -- some wondered if it hurt, my mom would show them it didn't. My friends never cared of me taking pills -- just curious about why i had to and why my meals were bigger.

I think junior high and high school changed the way I revealed CF. Some kids can be cruel in how they view others. Kids are sensitive about being different. One morning, I once was in the bathroom and a popular girl was changing out of her scoliosis brace before anyone would see her... She didn't want to wear it in front of her friends but had to hide that fact from her parents who thought she was wearing it all day like she should. I also used to hide my stomach aches and needing to go to the bathroom badly by waiting til the class started before going to the bathroom. I was embarrassed (and occasionally still am) of having diarrhea on the days after I forgot pills or ate an extra fatty meal.

Nowadays as an adult, one worries who will say you have CF to others for fear of being an infection risk or drain on the company (insurance). I've had recent probs (2 years ago when I first started in my current PNP job) with a person knowing I have CF. It's no longer a problem. A few coworkers know I have CF from me telling them. A few physicians I work with know from me telling them and some know from just observing me (clubbing, barrel chest, petiteness, cough, port visibility).

Anyways, sorry for the long post... congrats on having such a proactive daughter!

Jenn
30 yo cf
 
P

PedsNP2007

New member
WOW! That's so great that she is not afraid to be open about having cf, taking pills, etc. I think it reflects on her upbringing and that you are not afraid of sharing her CF with others. If parents are ashamed of it and hide it, the kids pick up that fear and shame and it reflects in their actions (hiding or not taking pills, fighting therapies if they want to play with friends).

I remember those days where you weren't worried what others thought about you. I remember having to go home after school and waiting my turn (i had 2 other cf siblings) to have my mom do hand cpt. After I was done, I could run outside all evening with my friends -- best chest physiotherapy ever!!!! (that was before homework in schools became 3 hours a night!) My friends never cared about seeing me get pounded -- some wondered if it hurt, my mom would show them it didn't. My friends never cared of me taking pills -- just curious about why i had to and why my meals were bigger.

I think junior high and high school changed the way I revealed CF. Some kids can be cruel in how they view others. Kids are sensitive about being different. One morning, I once was in the bathroom and a popular girl was changing out of her scoliosis brace before anyone would see her... She didn't want to wear it in front of her friends but had to hide that fact from her parents who thought she was wearing it all day like she should. I also used to hide my stomach aches and needing to go to the bathroom badly by waiting til the class started before going to the bathroom. I was embarrassed (and occasionally still am) of having diarrhea on the days after I forgot pills or ate an extra fatty meal.

Nowadays as an adult, one worries who will say you have CF to others for fear of being an infection risk or drain on the company (insurance). I've had recent probs (2 years ago when I first started in my current PNP job) with a person knowing I have CF. It's no longer a problem. A few coworkers know I have CF from me telling them. A few physicians I work with know from me telling them and some know from just observing me (clubbing, barrel chest, petiteness, cough, port visibility).

Anyways, sorry for the long post... congrats on having such a proactive daughter!

Jenn
30 yo cf
 
P

PedsNP2007

New member
WOW! That's so great that she is not afraid to be open about having cf, taking pills, etc. I think it reflects on her upbringing and that you are not afraid of sharing her CF with others. If parents are ashamed of it and hide it, the kids pick up that fear and shame and it reflects in their actions (hiding or not taking pills, fighting therapies if they want to play with friends).

I remember those days where you weren't worried what others thought about you. I remember having to go home after school and waiting my turn (i had 2 other cf siblings) to have my mom do hand cpt. After I was done, I could run outside all evening with my friends -- best chest physiotherapy ever!!!! (that was before homework in schools became 3 hours a night!) My friends never cared about seeing me get pounded -- some wondered if it hurt, my mom would show them it didn't. My friends never cared of me taking pills -- just curious about why i had to and why my meals were bigger.

I think junior high and high school changed the way I revealed CF. Some kids can be cruel in how they view others. Kids are sensitive about being different. One morning, I once was in the bathroom and a popular girl was changing out of her scoliosis brace before anyone would see her... She didn't want to wear it in front of her friends but had to hide that fact from her parents who thought she was wearing it all day like she should. I also used to hide my stomach aches and needing to go to the bathroom badly by waiting til the class started before going to the bathroom. I was embarrassed (and occasionally still am) of having diarrhea on the days after I forgot pills or ate an extra fatty meal.

Nowadays as an adult, one worries who will say you have CF to others for fear of being an infection risk or drain on the company (insurance). I've had recent probs (2 years ago when I first started in my current PNP job) with a person knowing I have CF. It's no longer a problem. A few coworkers know I have CF from me telling them. A few physicians I work with know from me telling them and some know from just observing me (clubbing, barrel chest, petiteness, cough, port visibility).

Anyways, sorry for the long post... congrats on having such a proactive daughter!

Jenn
30 yo cf
 
P

PedsNP2007

New member
WOW! That's so great that she is not afraid to be open about having cf, taking pills, etc. I think it reflects on her upbringing and that you are not afraid of sharing her CF with others. If parents are ashamed of it and hide it, the kids pick up that fear and shame and it reflects in their actions (hiding or not taking pills, fighting therapies if they want to play with friends).

I remember those days where you weren't worried what others thought about you. I remember having to go home after school and waiting my turn (i had 2 other cf siblings) to have my mom do hand cpt. After I was done, I could run outside all evening with my friends -- best chest physiotherapy ever!!!! (that was before homework in schools became 3 hours a night!) My friends never cared about seeing me get pounded -- some wondered if it hurt, my mom would show them it didn't. My friends never cared of me taking pills -- just curious about why i had to and why my meals were bigger.

I think junior high and high school changed the way I revealed CF. Some kids can be cruel in how they view others. Kids are sensitive about being different. One morning, I once was in the bathroom and a popular girl was changing out of her scoliosis brace before anyone would see her... She didn't want to wear it in front of her friends but had to hide that fact from her parents who thought she was wearing it all day like she should. I also used to hide my stomach aches and needing to go to the bathroom badly by waiting til the class started before going to the bathroom. I was embarrassed (and occasionally still am) of having diarrhea on the days after I forgot pills or ate an extra fatty meal.

Nowadays as an adult, one worries who will say you have CF to others for fear of being an infection risk or drain on the company (insurance). I've had recent probs (2 years ago when I first started in my current PNP job) with a person knowing I have CF. It's no longer a problem. A few coworkers know I have CF from me telling them. A few physicians I work with know from me telling them and some know from just observing me (clubbing, barrel chest, petiteness, cough, port visibility).

Anyways, sorry for the long post... congrats on having such a proactive daughter!

Jenn
30 yo cf
 
P

PedsNP2007

New member
WOW! That's so great that she is not afraid to be open about having cf, taking pills, etc. I think it reflects on her upbringing and that you are not afraid of sharing her CF with others. If parents are ashamed of it and hide it, the kids pick up that fear and shame and it reflects in their actions (hiding or not taking pills, fighting therapies if they want to play with friends).
<br />
<br />I remember those days where you weren't worried what others thought about you. I remember having to go home after school and waiting my turn (i had 2 other cf siblings) to have my mom do hand cpt. After I was done, I could run outside all evening with my friends -- best chest physiotherapy ever!!!! (that was before homework in schools became 3 hours a night!) My friends never cared about seeing me get pounded -- some wondered if it hurt, my mom would show them it didn't. My friends never cared of me taking pills -- just curious about why i had to and why my meals were bigger.
<br />
<br />I think junior high and high school changed the way I revealed CF. Some kids can be cruel in how they view others. Kids are sensitive about being different. One morning, I once was in the bathroom and a popular girl was changing out of her scoliosis brace before anyone would see her... She didn't want to wear it in front of her friends but had to hide that fact from her parents who thought she was wearing it all day like she should. I also used to hide my stomach aches and needing to go to the bathroom badly by waiting til the class started before going to the bathroom. I was embarrassed (and occasionally still am) of having diarrhea on the days after I forgot pills or ate an extra fatty meal.
<br />
<br />Nowadays as an adult, one worries who will say you have CF to others for fear of being an infection risk or drain on the company (insurance). I've had recent probs (2 years ago when I first started in my current PNP job) with a person knowing I have CF. It's no longer a problem. A few coworkers know I have CF from me telling them. A few physicians I work with know from me telling them and some know from just observing me (clubbing, barrel chest, petiteness, cough, port visibility).
<br />
<br />Anyways, sorry for the long post... congrats on having such a proactive daughter!
<br />
<br />Jenn
<br />30 yo cf
 
M

Mommafirst

Guest
YAY Maggie -- great that she is in this place. Its where I hope Alyssa will be in two years when she is Maggie's age.

I'm a firm believer in just telling it like it is and not teaching them to be ashamed in any way of this CF stuff -- it really upsets me when I hear about moms hiding the CF stuff so their kid won't seem abnormal, when that shame is what makes them feel worse.
 
M

Mommafirst

Guest
YAY Maggie -- great that she is in this place. Its where I hope Alyssa will be in two years when she is Maggie's age.

I'm a firm believer in just telling it like it is and not teaching them to be ashamed in any way of this CF stuff -- it really upsets me when I hear about moms hiding the CF stuff so their kid won't seem abnormal, when that shame is what makes them feel worse.
 
M

Mommafirst

Guest
YAY Maggie -- great that she is in this place. Its where I hope Alyssa will be in two years when she is Maggie's age.

I'm a firm believer in just telling it like it is and not teaching them to be ashamed in any way of this CF stuff -- it really upsets me when I hear about moms hiding the CF stuff so their kid won't seem abnormal, when that shame is what makes them feel worse.
 
M

Mommafirst

Guest
YAY Maggie -- great that she is in this place. Its where I hope Alyssa will be in two years when she is Maggie's age.

I'm a firm believer in just telling it like it is and not teaching them to be ashamed in any way of this CF stuff -- it really upsets me when I hear about moms hiding the CF stuff so their kid won't seem abnormal, when that shame is what makes them feel worse.
 
M

Mommafirst

Guest
YAY Maggie -- great that she is in this place. Its where I hope Alyssa will be in two years when she is Maggie's age.
<br />
<br />I'm a firm believer in just telling it like it is and not teaching them to be ashamed in any way of this CF stuff -- it really upsets me when I hear about moms hiding the CF stuff so their kid won't seem abnormal, when that shame is what makes them feel worse.
 
R

Rebjane

Super Moderator
It's funny; when this woman came up to me to tell me how much Maggie has been talking in class and how outgoing she is, I was a little afraid of what she was going to say Maggie was saying...just because Maggie likes to be the center of attention and who knows what may come out of her mouth(could have been a really embarrassing story about me or something). Any way, it keeps you on your toes. Maggie had also talked about at school her bowel surgery. She had been asking me about the scars on her belly so I told her she had surgery when she was born and then again when she was 5 months old. Her 5 month old surgery was because of a volvulus(twisting of the bowel basically into a pretzel around adhesions in her bowel). I told her her intestines got twisted into a knot and the doctor had to do surgery to untwist them. So she was talking about that at school. Makes me wonder what the other kids are thinking...Like I hope she's not scaring them or anything.
 
R

Rebjane

Super Moderator
It's funny; when this woman came up to me to tell me how much Maggie has been talking in class and how outgoing she is, I was a little afraid of what she was going to say Maggie was saying...just because Maggie likes to be the center of attention and who knows what may come out of her mouth(could have been a really embarrassing story about me or something). Any way, it keeps you on your toes. Maggie had also talked about at school her bowel surgery. She had been asking me about the scars on her belly so I told her she had surgery when she was born and then again when she was 5 months old. Her 5 month old surgery was because of a volvulus(twisting of the bowel basically into a pretzel around adhesions in her bowel). I told her her intestines got twisted into a knot and the doctor had to do surgery to untwist them. So she was talking about that at school. Makes me wonder what the other kids are thinking...Like I hope she's not scaring them or anything.
 
R

Rebjane

Super Moderator
It's funny; when this woman came up to me to tell me how much Maggie has been talking in class and how outgoing she is, I was a little afraid of what she was going to say Maggie was saying...just because Maggie likes to be the center of attention and who knows what may come out of her mouth(could have been a really embarrassing story about me or something). Any way, it keeps you on your toes. Maggie had also talked about at school her bowel surgery. She had been asking me about the scars on her belly so I told her she had surgery when she was born and then again when she was 5 months old. Her 5 month old surgery was because of a volvulus(twisting of the bowel basically into a pretzel around adhesions in her bowel). I told her her intestines got twisted into a knot and the doctor had to do surgery to untwist them. So she was talking about that at school. Makes me wonder what the other kids are thinking...Like I hope she's not scaring them or anything.
 
R

Rebjane

Super Moderator
It's funny; when this woman came up to me to tell me how much Maggie has been talking in class and how outgoing she is, I was a little afraid of what she was going to say Maggie was saying...just because Maggie likes to be the center of attention and who knows what may come out of her mouth(could have been a really embarrassing story about me or something). Any way, it keeps you on your toes. Maggie had also talked about at school her bowel surgery. She had been asking me about the scars on her belly so I told her she had surgery when she was born and then again when she was 5 months old. Her 5 month old surgery was because of a volvulus(twisting of the bowel basically into a pretzel around adhesions in her bowel). I told her her intestines got twisted into a knot and the doctor had to do surgery to untwist them. So she was talking about that at school. Makes me wonder what the other kids are thinking...Like I hope she's not scaring them or anything.
 
R

Rebjane

Super Moderator
It's funny; when this woman came up to me to tell me how much Maggie has been talking in class and how outgoing she is, I was a little afraid of what she was going to say Maggie was saying...just because Maggie likes to be the center of attention and who knows what may come out of her mouth(could have been a really embarrassing story about me or something). Any way, it keeps you on your toes. Maggie had also talked about at school her bowel surgery. She had been asking me about the scars on her belly so I told her she had surgery when she was born and then again when she was 5 months old. Her 5 month old surgery was because of a volvulus(twisting of the bowel basically into a pretzel around adhesions in her bowel). I told her her intestines got twisted into a knot and the doctor had to do surgery to untwist them. So she was talking about that at school. Makes me wonder what the other kids are thinking...Like I hope she's not scaring them or anything.
 
You must log in or register to reply here.
Top