Help With Family Life and Self Motivation?

Beccamom

New member
Have you considered that maybe your parents are terrified of your CF. My daughter is almost 11 and she is in diagnostic limbo regarding her diagnosis of CF. Just the possibility that she has CF terrifies me. I would definately sacrifice my daughter's opinion of me if I fealt that it was the only way to get her to do her treatments and then have a chance to out live me. I often dream that I have donated my lungs to my daughter who is now in my dream living free of lung disease and I am watching down on her from heaven. It is crazy what a mom will do for her daughter. I would do anything. I am fortunate that so far our relationship has gotten closer as she has begun many CF treatments. Tonight she went on this website for the first time and I hope she doesn't get depressed about the disease especially since we don't know for sure if she has it. However, I also hope she sees the consequences of not doing treatments and continues to be proactive with her care. Try to start a serious talk with your parents about how they feel about CF. Ask for the truth without the sugar coating. You may be surprised about what you hear (fear versus anger). I wish you the best.
 

SIcklyhatED

New member
I think most young people with CF on here can tell you that they;ve had similar problems with their families; what can we say? It affects everyone in some way.
<br>
<br>Personally my parents would go through periods where they would hound me, then back off, then hound again. Now that I'm a bit older (granted I'm only 18) we've come to a mutual agreement that this is MY disease and that we will work on this together, with each other's input. they've been dealing with this, consciously, a hell of a lot longer than I've been. I think most of it was a maturity thing. I can't always whine and kick and scream and blame them for my problems after all. they're just being parents.
<br>
<br>Also.... Beccamom, I noticed that you said you're not sure if your daughter has CF, but you've been a member on on the boards since April... how is it that your family still has not had a confirmed diagnosis?
 

SIcklyhatED

New member
I think most young people with CF on here can tell you that they;ve had similar problems with their families; what can we say? It affects everyone in some way.
<br>
<br>Personally my parents would go through periods where they would hound me, then back off, then hound again. Now that I'm a bit older (granted I'm only 18) we've come to a mutual agreement that this is MY disease and that we will work on this together, with each other's input. they've been dealing with this, consciously, a hell of a lot longer than I've been. I think most of it was a maturity thing. I can't always whine and kick and scream and blame them for my problems after all. they're just being parents.
<br>
<br>Also.... Beccamom, I noticed that you said you're not sure if your daughter has CF, but you've been a member on on the boards since April... how is it that your family still has not had a confirmed diagnosis?
 

SIcklyhatED

New member
I think most young people with CF on here can tell you that they;ve had similar problems with their families; what can we say? It affects everyone in some way.
<br>
<br>Personally my parents would go through periods where they would hound me, then back off, then hound again. Now that I'm a bit older (granted I'm only 18) we've come to a mutual agreement that this is MY disease and that we will work on this together, with each other's input. they've been dealing with this, consciously, a hell of a lot longer than I've been. I think most of it was a maturity thing. I can't always whine and kick and scream and blame them for my problems after all. they're just being parents.
<br>
<br>Also.... Beccamom, I noticed that you said you're not sure if your daughter has CF, but you've been a member on on the boards since April... how is it that your family still has not had a confirmed diagnosis?
 

jamoncita

New member
Hm... I can tell you that my mom was always on my case when I was first diagnosed, and eventually (after getting angry all the time) I asked her - maybe not so kindly - to stop nagging me because I wanted to handle it myself. That's what I got, alright! Since then, I've been handling my illness and paperwork mostly on my own, which is pretty hard to do. I know my parents want the best for me, but they don't know how to help sometimes. You can fight and fight all you want, but I think you need to calmly tell them their attitude isn't helping, and it's likely stressing you out and leading to your poor health. Tell them if they want to help you they need to lay off. And try not to be too angry because being on your own and dealing with CF will likely be a lot harder for you. If that doesn't work, maybe you just need to listen to them to see where they're coming from so that you might be able to ease their concerns. Or maybe you could talk to your doctor or social worker and see if they can help by speaking with your parents. Good luck. Stay strong.
 

jamoncita

New member
Hm... I can tell you that my mom was always on my case when I was first diagnosed, and eventually (after getting angry all the time) I asked her - maybe not so kindly - to stop nagging me because I wanted to handle it myself. That's what I got, alright! Since then, I've been handling my illness and paperwork mostly on my own, which is pretty hard to do. I know my parents want the best for me, but they don't know how to help sometimes. You can fight and fight all you want, but I think you need to calmly tell them their attitude isn't helping, and it's likely stressing you out and leading to your poor health. Tell them if they want to help you they need to lay off. And try not to be too angry because being on your own and dealing with CF will likely be a lot harder for you. If that doesn't work, maybe you just need to listen to them to see where they're coming from so that you might be able to ease their concerns. Or maybe you could talk to your doctor or social worker and see if they can help by speaking with your parents. Good luck. Stay strong.
 

jamoncita

New member
Hm... I can tell you that my mom was always on my case when I was first diagnosed, and eventually (after getting angry all the time) I asked her - maybe not so kindly - to stop nagging me because I wanted to handle it myself. That's what I got, alright! Since then, I've been handling my illness and paperwork mostly on my own, which is pretty hard to do. I know my parents want the best for me, but they don't know how to help sometimes. You can fight and fight all you want, but I think you need to calmly tell them their attitude isn't helping, and it's likely stressing you out and leading to your poor health. Tell them if they want to help you they need to lay off. And try not to be too angry because being on your own and dealing with CF will likely be a lot harder for you. If that doesn't work, maybe you just need to listen to them to see where they're coming from so that you might be able to ease their concerns. Or maybe you could talk to your doctor or social worker and see if they can help by speaking with your parents. Good luck. Stay strong.
 

Hardak

New member
The illness and paper work load can be alot to deal with, down right over whelming. I think your parents are wrong in there assessment of the family counseling idea. I love the ideal of getting your own place, more so if your working. for a time be-for I moved out my parents where hounding me alot too. Then at some point in time things changed, the distance of not living together really did help. Not sure if I learned something, or they simply quit seeing me every time I coughed. At some point your parents need to back off and let you live your own life, they can still be there to help when asked too. In any case best of luck let me know how it turns out.

Keith
 

Hardak

New member
The illness and paper work load can be alot to deal with, down right over whelming. I think your parents are wrong in there assessment of the family counseling idea. I love the ideal of getting your own place, more so if your working. for a time be-for I moved out my parents where hounding me alot too. Then at some point in time things changed, the distance of not living together really did help. Not sure if I learned something, or they simply quit seeing me every time I coughed. At some point your parents need to back off and let you live your own life, they can still be there to help when asked too. In any case best of luck let me know how it turns out.

Keith
 

Hardak

New member
The illness and paper work load can be alot to deal with, down right over whelming. I think your parents are wrong in there assessment of the family counseling idea. I love the ideal of getting your own place, more so if your working. for a time be-for I moved out my parents where hounding me alot too. Then at some point in time things changed, the distance of not living together really did help. Not sure if I learned something, or they simply quit seeing me every time I coughed. At some point your parents need to back off and let you live your own life, they can still be there to help when asked too. In any case best of luck let me know how it turns out.
<br />
<br />Keith
 
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Tracy390

Guest
Speaking as a CF mom I have always been over protective of my 20 year old daughter. It's hard to let go & allow them to do things on their own (like breathing treatments, IV's, tube feeds, doctor appointments, controlling sugars). My daughter has been through alot. She had a double-lung & kidney transplant in 2007. I'm sure your parents want the best for you as any parent would. It's scary to back off & allow your child to take over because you have done it all for them for so long. I can only say try to be patient with them but prove to them your an adult & can handle your medical care. Once they see you caring for yourself & doing well I'm sure they will feel better & be very proud of you as I am of my daughter. Hope this helps & good luck with your situation.
 
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Tracy390

Guest
Speaking as a CF mom I have always been over protective of my 20 year old daughter. It's hard to let go & allow them to do things on their own (like breathing treatments, IV's, tube feeds, doctor appointments, controlling sugars). My daughter has been through alot. She had a double-lung & kidney transplant in 2007. I'm sure your parents want the best for you as any parent would. It's scary to back off & allow your child to take over because you have done it all for them for so long. I can only say try to be patient with them but prove to them your an adult & can handle your medical care. Once they see you caring for yourself & doing well I'm sure they will feel better & be very proud of you as I am of my daughter. Hope this helps & good luck with your situation.
 
T

Tracy390

Guest
Speaking as a CF mom I have always been over protective of my 20 year old daughter. It's hard to let go & allow them to do things on their own (like breathing treatments, IV's, tube feeds, doctor appointments, controlling sugars). My daughter has been through alot. She had a double-lung & kidney transplant in 2007. I'm sure your parents want the best for you as any parent would. It's scary to back off & allow your child to take over because you have done it all for them for so long. I can only say try to be patient with them but prove to them your an adult & can handle your medical care. Once they see you caring for yourself & doing well I'm sure they will feel better & be very proud of you as I am of my daughter. Hope this helps & good luck with your situation.
 
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