Newbie memeber....Hello

Megmolly · Jan 4, 2009

<img src="i/expressions/rose.gif" border="0">
Hi my name is Meg and I am the mother of 3 kids 2 wcf (18yrs & 8yrs) Been down lately and have not been on any support group in years and then was looking on line for one and found this one. Knew something led me here when I saw my daughters face on the BEF logo. She is the third picture in. She was 10 when that was taken and my son was 3 months old. Seems a life time ago..... Well I am from New York and we go to the CF center in Columbia Pres. We have had 3 tune-ups at Club med this year. The older one 2 in 6 months and only one for my son. She goes into see her Pulm @ Hackensack Med on Tues and we will see if she needs go back in again.
Maureen has CF, Crohn's, RA & CFRD @ 18 yrs and she is no compliant with all of her treatments
She will not take her sugars or any of that
She wants to go away in the fall, she stayed home this year at community college. The college she wants to go to is in state abt 3 hrs away and has a CF Center.
I just feel overwhelmed because she is not as self sufficiant as she should be and though maybe i need some more insight from other parents

Thanks
Meg

Megmolly · Jan 4, 2009

<img src="i/expressions/rose.gif" border="0">
Hi my name is Meg and I am the mother of 3 kids 2 wcf (18yrs & 8yrs) Been down lately and have not been on any support group in years and then was looking on line for one and found this one. Knew something led me here when I saw my daughters face on the BEF logo. She is the third picture in. She was 10 when that was taken and my son was 3 months old. Seems a life time ago..... Well I am from New York and we go to the CF center in Columbia Pres. We have had 3 tune-ups at Club med this year. The older one 2 in 6 months and only one for my son. She goes into see her Pulm @ Hackensack Med on Tues and we will see if she needs go back in again.
Maureen has CF, Crohn's, RA & CFRD @ 18 yrs and she is no compliant with all of her treatments
She will not take her sugars or any of that
She wants to go away in the fall, she stayed home this year at community college. The college she wants to go to is in state abt 3 hrs away and has a CF Center.
I just feel overwhelmed because she is not as self sufficiant as she should be and though maybe i need some more insight from other parents

Thanks
Meg

Megmolly · Jan 4, 2009

<img src="i/expressions/rose.gif" border="0">
Hi my name is Meg and I am the mother of 3 kids 2 wcf (18yrs & 8yrs) Been down lately and have not been on any support group in years and then was looking on line for one and found this one. Knew something led me here when I saw my daughters face on the BEF logo. She is the third picture in. She was 10 when that was taken and my son was 3 months old. Seems a life time ago..... Well I am from New York and we go to the CF center in Columbia Pres. We have had 3 tune-ups at Club med this year. The older one 2 in 6 months and only one for my son. She goes into see her Pulm @ Hackensack Med on Tues and we will see if she needs go back in again.
Maureen has CF, Crohn's, RA & CFRD @ 18 yrs and she is no compliant with all of her treatments
She will not take her sugars or any of that
She wants to go away in the fall, she stayed home this year at community college. The college she wants to go to is in state abt 3 hrs away and has a CF Center.
I just feel overwhelmed because she is not as self sufficiant as she should be and though maybe i need some more insight from other parents

Thanks
Meg

Megmolly · Jan 4, 2009

<img src="i/expressions/rose.gif" border="0">
Hi my name is Meg and I am the mother of 3 kids 2 wcf (18yrs & 8yrs) Been down lately and have not been on any support group in years and then was looking on line for one and found this one. Knew something led me here when I saw my daughters face on the BEF logo. She is the third picture in. She was 10 when that was taken and my son was 3 months old. Seems a life time ago..... Well I am from New York and we go to the CF center in Columbia Pres. We have had 3 tune-ups at Club med this year. The older one 2 in 6 months and only one for my son. She goes into see her Pulm @ Hackensack Med on Tues and we will see if she needs go back in again.
Maureen has CF, Crohn's, RA & CFRD @ 18 yrs and she is no compliant with all of her treatments
She will not take her sugars or any of that
She wants to go away in the fall, she stayed home this year at community college. The college she wants to go to is in state abt 3 hrs away and has a CF Center.
I just feel overwhelmed because she is not as self sufficiant as she should be and though maybe i need some more insight from other parents

Thanks
Meg

Megmolly · Jan 4, 2009

<img src="i/expressions/rose.gif" border="0">
 Hi my name is Meg and I am the mother of 3 kids 2 wcf (18yrs & 8yrs) Been down lately and have not been on any support group in years and then was looking on line for one and found this one. Knew something led me here when I saw my daughters face on the BEF logo. She is the third picture in. She was 10 when that was taken and my son was 3 months old. Seems a life time ago..... Well I am from New York and we go to the CF center in Columbia Pres. We have had 3 tune-ups at Club med this year. The older one 2 in 6 months and only one for my son. She goes into see her Pulm @ Hackensack Med on Tues and we will see if she needs go back in again.
 Maureen has CF, Crohn's, RA & CFRD @ 18 yrs and she is no compliant with all of her treatments
 She will not take her sugars or any of that
 She wants to go away in the fall, she stayed home this year at community college. The college she wants to go to is in state abt 3 hrs away and has a CF Center.
 I just feel overwhelmed because she is not as self sufficiant as she should be and though maybe i need some more insight from other parents
 
 Thanks
 Meg

Megmolly · Jan 4, 2009

<img src="i/expressions/face-icon-small-blush.gif" border="0">
Thank you Andee for your help and imput. Moe is looking at a college in state but about 3 hours from home. the is a CF center at the school and my parents have a house within 45 minutes from the school. My goal is to have her visit the CF center at school over the summer and get to know the set up.

Megmolly · Jan 4, 2009

<img src="i/expressions/face-icon-small-blush.gif" border="0">
Thank you Andee for your help and imput. Moe is looking at a college in state but about 3 hours from home. the is a CF center at the school and my parents have a house within 45 minutes from the school. My goal is to have her visit the CF center at school over the summer and get to know the set up.

Megmolly · Jan 4, 2009

<img src="i/expressions/face-icon-small-blush.gif" border="0">
Thank you Andee for your help and imput. Moe is looking at a college in state but about 3 hours from home. the is a CF center at the school and my parents have a house within 45 minutes from the school. My goal is to have her visit the CF center at school over the summer and get to know the set up.

Megmolly · Jan 4, 2009

<img src="i/expressions/face-icon-small-blush.gif" border="0">
Thank you Andee for your help and imput. Moe is looking at a college in state but about 3 hours from home. the is a CF center at the school and my parents have a house within 45 minutes from the school. My goal is to have her visit the CF center at school over the summer and get to know the set up.

Megmolly · Jan 4, 2009

<img src="i/expressions/face-icon-small-blush.gif" border="0">
 Thank you Andee for your help and imput. Moe is looking at a college in state but about 3 hours from home. the is a CF center at the school and my parents have a house within 45 minutes from the school. My goal is to have her visit the CF center at school over the summer and get to know the set up.

NYCLawGirl · Jan 4, 2009

Meg, I'm not a CF parent but I am an adult CFer who (unfortunately) has some insight into the whole noncompliance phase. I also live in the city and go to Columbia Pres for my CF care -- the adult clinic, not sure if your daughter is seen there or at the children's hospital.

When I was 18 I was totally uninterested in treatments, to the point where even simple things like oral antibiotics or enzymes seemed like a huge burden. I still went away to college, though, and actually moved from Denver to Atlanta to go to school. I don't want to lie to you, I definitely skipped more treatments than I should have my first couple years of college, and I didn't become compliant overnight by any means. But I will say that going away and establishing my own relationship with the new CF center at my college was a huge step in the right direction for me. Ironically, I think a lot of my compliance issues were actually centered around hating to be told what to do and being treated like I was somehow fragile b/c I was sick. This is in no means a criticism of my parents, who are amazing and definitely did most everything right, but let's face it: 18 is an age when most of us really want to feel "grown up" and independent. Once I was out on my own, making my own choices and dealing with the consequences, I actually wised up a lot. And I realized that no one was going to make me do my treatments. Ultimately taking responsibility for my health had to be my choice.

My parents didn't entirely back down or get out of my care when I left home. They still offered help when I needed it (like with navigating insurance issues) and they definitely made it clear that they were still invested in my health. They would ask questions and remained concerned parents. But ultimately they weren't there every night telling me it was time to do my nebs or asking if I'd taken my pills that morning. For me, and also probably for them, that was liberating. Hard, sure, but liberating. If I got sick, I called the doctor. If I had a prescription, I had to get it filled. I made a ton of mistakes for sure, but it was all part of growing up.

9 years after I first left home for college I am 100% compliant with treatments, exercise, doctor visits, and pretty much everything else related to my CF care. I credit a lot of that to the fact that my parents demonstrated trust and confidence in me (even when I wasn't perfect). I am also sooo happy that I made the educational choices I did, b/c ultimately that has a huge affect on life. I went to a school I adored, made lasting friendships, got started on a successful career track, and grew both as a person and as a CF patient during my college years. Hopefully your daughter will too -- no matter where she ends up.

NYCLawGirl · Jan 4, 2009

Meg, I'm not a CF parent but I am an adult CFer who (unfortunately) has some insight into the whole noncompliance phase. I also live in the city and go to Columbia Pres for my CF care -- the adult clinic, not sure if your daughter is seen there or at the children's hospital.

When I was 18 I was totally uninterested in treatments, to the point where even simple things like oral antibiotics or enzymes seemed like a huge burden. I still went away to college, though, and actually moved from Denver to Atlanta to go to school. I don't want to lie to you, I definitely skipped more treatments than I should have my first couple years of college, and I didn't become compliant overnight by any means. But I will say that going away and establishing my own relationship with the new CF center at my college was a huge step in the right direction for me. Ironically, I think a lot of my compliance issues were actually centered around hating to be told what to do and being treated like I was somehow fragile b/c I was sick. This is in no means a criticism of my parents, who are amazing and definitely did most everything right, but let's face it: 18 is an age when most of us really want to feel "grown up" and independent. Once I was out on my own, making my own choices and dealing with the consequences, I actually wised up a lot. And I realized that no one was going to make me do my treatments. Ultimately taking responsibility for my health had to be my choice.

My parents didn't entirely back down or get out of my care when I left home. They still offered help when I needed it (like with navigating insurance issues) and they definitely made it clear that they were still invested in my health. They would ask questions and remained concerned parents. But ultimately they weren't there every night telling me it was time to do my nebs or asking if I'd taken my pills that morning. For me, and also probably for them, that was liberating. Hard, sure, but liberating. If I got sick, I called the doctor. If I had a prescription, I had to get it filled. I made a ton of mistakes for sure, but it was all part of growing up.

9 years after I first left home for college I am 100% compliant with treatments, exercise, doctor visits, and pretty much everything else related to my CF care. I credit a lot of that to the fact that my parents demonstrated trust and confidence in me (even when I wasn't perfect). I am also sooo happy that I made the educational choices I did, b/c ultimately that has a huge affect on life. I went to a school I adored, made lasting friendships, got started on a successful career track, and grew both as a person and as a CF patient during my college years. Hopefully your daughter will too -- no matter where she ends up.

NYCLawGirl · Jan 4, 2009

Meg, I'm not a CF parent but I am an adult CFer who (unfortunately) has some insight into the whole noncompliance phase. I also live in the city and go to Columbia Pres for my CF care -- the adult clinic, not sure if your daughter is seen there or at the children's hospital.

When I was 18 I was totally uninterested in treatments, to the point where even simple things like oral antibiotics or enzymes seemed like a huge burden. I still went away to college, though, and actually moved from Denver to Atlanta to go to school. I don't want to lie to you, I definitely skipped more treatments than I should have my first couple years of college, and I didn't become compliant overnight by any means. But I will say that going away and establishing my own relationship with the new CF center at my college was a huge step in the right direction for me. Ironically, I think a lot of my compliance issues were actually centered around hating to be told what to do and being treated like I was somehow fragile b/c I was sick. This is in no means a criticism of my parents, who are amazing and definitely did most everything right, but let's face it: 18 is an age when most of us really want to feel "grown up" and independent. Once I was out on my own, making my own choices and dealing with the consequences, I actually wised up a lot. And I realized that no one was going to make me do my treatments. Ultimately taking responsibility for my health had to be my choice.

My parents didn't entirely back down or get out of my care when I left home. They still offered help when I needed it (like with navigating insurance issues) and they definitely made it clear that they were still invested in my health. They would ask questions and remained concerned parents. But ultimately they weren't there every night telling me it was time to do my nebs or asking if I'd taken my pills that morning. For me, and also probably for them, that was liberating. Hard, sure, but liberating. If I got sick, I called the doctor. If I had a prescription, I had to get it filled. I made a ton of mistakes for sure, but it was all part of growing up.

9 years after I first left home for college I am 100% compliant with treatments, exercise, doctor visits, and pretty much everything else related to my CF care. I credit a lot of that to the fact that my parents demonstrated trust and confidence in me (even when I wasn't perfect). I am also sooo happy that I made the educational choices I did, b/c ultimately that has a huge affect on life. I went to a school I adored, made lasting friendships, got started on a successful career track, and grew both as a person and as a CF patient during my college years. Hopefully your daughter will too -- no matter where she ends up.

NYCLawGirl · Jan 4, 2009

Meg, I'm not a CF parent but I am an adult CFer who (unfortunately) has some insight into the whole noncompliance phase. I also live in the city and go to Columbia Pres for my CF care -- the adult clinic, not sure if your daughter is seen there or at the children's hospital.

When I was 18 I was totally uninterested in treatments, to the point where even simple things like oral antibiotics or enzymes seemed like a huge burden. I still went away to college, though, and actually moved from Denver to Atlanta to go to school. I don't want to lie to you, I definitely skipped more treatments than I should have my first couple years of college, and I didn't become compliant overnight by any means. But I will say that going away and establishing my own relationship with the new CF center at my college was a huge step in the right direction for me. Ironically, I think a lot of my compliance issues were actually centered around hating to be told what to do and being treated like I was somehow fragile b/c I was sick. This is in no means a criticism of my parents, who are amazing and definitely did most everything right, but let's face it: 18 is an age when most of us really want to feel "grown up" and independent. Once I was out on my own, making my own choices and dealing with the consequences, I actually wised up a lot. And I realized that no one was going to make me do my treatments. Ultimately taking responsibility for my health had to be my choice.

My parents didn't entirely back down or get out of my care when I left home. They still offered help when I needed it (like with navigating insurance issues) and they definitely made it clear that they were still invested in my health. They would ask questions and remained concerned parents. But ultimately they weren't there every night telling me it was time to do my nebs or asking if I'd taken my pills that morning. For me, and also probably for them, that was liberating. Hard, sure, but liberating. If I got sick, I called the doctor. If I had a prescription, I had to get it filled. I made a ton of mistakes for sure, but it was all part of growing up.

9 years after I first left home for college I am 100% compliant with treatments, exercise, doctor visits, and pretty much everything else related to my CF care. I credit a lot of that to the fact that my parents demonstrated trust and confidence in me (even when I wasn't perfect). I am also sooo happy that I made the educational choices I did, b/c ultimately that has a huge affect on life. I went to a school I adored, made lasting friendships, got started on a successful career track, and grew both as a person and as a CF patient during my college years. Hopefully your daughter will too -- no matter where she ends up.

NYCLawGirl · Jan 4, 2009

Meg, I'm not a CF parent but I am an adult CFer who (unfortunately) has some insight into the whole noncompliance phase. I also live in the city and go to Columbia Pres for my CF care -- the adult clinic, not sure if your daughter is seen there or at the children's hospital.
 
 When I was 18 I was totally uninterested in treatments, to the point where even simple things like oral antibiotics or enzymes seemed like a huge burden. I still went away to college, though, and actually moved from Denver to Atlanta to go to school. I don't want to lie to you, I definitely skipped more treatments than I should have my first couple years of college, and I didn't become compliant overnight by any means. But I will say that going away and establishing my own relationship with the new CF center at my college was a huge step in the right direction for me. Ironically, I think a lot of my compliance issues were actually centered around hating to be told what to do and being treated like I was somehow fragile b/c I was sick. This is in no means a criticism of my parents, who are amazing and definitely did most everything right, but let's face it: 18 is an age when most of us really want to feel "grown up" and independent. Once I was out on my own, making my own choices and dealing with the consequences, I actually wised up a lot. And I realized that no one was going to make me do my treatments. Ultimately taking responsibility for my health had to be my choice.
 
 My parents didn't entirely back down or get out of my care when I left home. They still offered help when I needed it (like with navigating insurance issues) and they definitely made it clear that they were still invested in my health. They would ask questions and remained concerned parents. But ultimately they weren't there every night telling me it was time to do my nebs or asking if I'd taken my pills that morning. For me, and also probably for them, that was liberating. Hard, sure, but liberating. If I got sick, I called the doctor. If I had a prescription, I had to get it filled. I made a ton of mistakes for sure, but it was all part of growing up.
 
 9 years after I first left home for college I am 100% compliant with treatments, exercise, doctor visits, and pretty much everything else related to my CF care. I credit a lot of that to the fact that my parents demonstrated trust and confidence in me (even when I wasn't perfect). I am also sooo happy that I made the educational choices I did, b/c ultimately that has a huge affect on life. I went to a school I adored, made lasting friendships, got started on a successful career track, and grew both as a person and as a CF patient during my college years. Hopefully your daughter will too -- no matter where she ends up.

Jane · Jan 4, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Megmolly

<img src="">

I just feel overwhelmed because she is not as self sufficiant as she should be

Meg</end quote></div>

Wow Meg does that sound familiar! My son is planning on college next year but will live at home because he just isn't responsible enough to handle his cf care. We live just south of Boston and have several options for good colleges within driving distance, so thankfully he won't have to change clinics. He is not completely non-compliant, but he is disorganized. He knows he's not ready to be out on his own so its not a fight (yet).

Be glad that your daughter is willing to connect with a new cf center. That should give you a little assurance. Its not easy to let them go.

Jane · Jan 4, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Megmolly

<img src="">

I just feel overwhelmed because she is not as self sufficiant as she should be

Meg</end quote></div>

Wow Meg does that sound familiar! My son is planning on college next year but will live at home because he just isn't responsible enough to handle his cf care. We live just south of Boston and have several options for good colleges within driving distance, so thankfully he won't have to change clinics. He is not completely non-compliant, but he is disorganized. He knows he's not ready to be out on his own so its not a fight (yet).

Be glad that your daughter is willing to connect with a new cf center. That should give you a little assurance. Its not easy to let them go.

Jane · Jan 4, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Megmolly

<img src="">

I just feel overwhelmed because she is not as self sufficiant as she should be

Meg</end quote></div>

Wow Meg does that sound familiar! My son is planning on college next year but will live at home because he just isn't responsible enough to handle his cf care. We live just south of Boston and have several options for good colleges within driving distance, so thankfully he won't have to change clinics. He is not completely non-compliant, but he is disorganized. He knows he's not ready to be out on his own so its not a fight (yet).

Be glad that your daughter is willing to connect with a new cf center. That should give you a little assurance. Its not easy to let them go.

Jane · Jan 4, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Megmolly

<img src="">

I just feel overwhelmed because she is not as self sufficiant as she should be

Meg</end quote>

Wow Meg does that sound familiar! My son is planning on college next year but will live at home because he just isn't responsible enough to handle his cf care. We live just south of Boston and have several options for good colleges within driving distance, so thankfully he won't have to change clinics. He is not completely non-compliant, but he is disorganized. He knows he's not ready to be out on his own so its not a fight (yet).

Be glad that your daughter is willing to connect with a new cf center. That should give you a little assurance. Its not easy to let them go.

Jane · Jan 4, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Megmolly
 
 <img src="">
 
 I just feel overwhelmed because she is not as self sufficiant as she should be
 
 Meg</end quote>
 
 Wow Meg does that sound familiar! My son is planning on college next year but will live at home because he just isn't responsible enough to handle his cf care. We live just south of Boston and have several options for good colleges within driving distance, so thankfully he won't have to change clinics. He is not completely non-compliant, but he is disorganized. He knows he's not ready to be out on his own so its not a fight (yet).
 
 Be glad that your daughter is willing to connect with a new cf center. That should give you a little assurance. Its not easy to let them go.

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