Need some help with dealing with all this...

G

Giggles

New member
I am so sorry you are going through this! I can say that right after IV drugs my numbers and how I feel is really not the greatest. I personally need to get the meds out of my system , get some better sleep ( no IV's to worry about) and get back to exercising and eating good since the IV's make me loose my appetite a bit. So all in all I basically need to get back to norm and then I start to really feel better!

You can also make sure that her sputum cultures are showing that the drugs she is on are working and are not resistant.

Hang in there! There are so many Ups and Downs with CF it is like a roller coaster so try to just enjoy the ride the best you can and show your daughter that it is okay to feel like crap it is normal but you have to do your BEST to do what you can to get yourself feeling better and you will!!!

Stay well and you can email me a private message if you want to talk more or want to hear more about my experiences growing up with CF and being a girl!

Merry Christmas!

Jennifer 35 years old with CF and CFRD

Not sure what your faith is but I like this quote from Beth Moore: GOD is never late, but he misses a few good opportunities to be early! I also like a verse in the bible that says worrying will not add one day to your life. So I tend to try to leave my worries and concerns at GODS feet and enjoy the times as they come the best that I can.


Hope that helps!
 
G

Giggles

New member
I am so sorry you are going through this! I can say that right after IV drugs my numbers and how I feel is really not the greatest. I personally need to get the meds out of my system , get some better sleep ( no IV's to worry about) and get back to exercising and eating good since the IV's make me loose my appetite a bit. So all in all I basically need to get back to norm and then I start to really feel better!

You can also make sure that her sputum cultures are showing that the drugs she is on are working and are not resistant.

Hang in there! There are so many Ups and Downs with CF it is like a roller coaster so try to just enjoy the ride the best you can and show your daughter that it is okay to feel like crap it is normal but you have to do your BEST to do what you can to get yourself feeling better and you will!!!

Stay well and you can email me a private message if you want to talk more or want to hear more about my experiences growing up with CF and being a girl!

Merry Christmas!

Jennifer 35 years old with CF and CFRD

Not sure what your faith is but I like this quote from Beth Moore: GOD is never late, but he misses a few good opportunities to be early! I also like a verse in the bible that says worrying will not add one day to your life. So I tend to try to leave my worries and concerns at GODS feet and enjoy the times as they come the best that I can.


Hope that helps!
 
G

Giggles

New member
I am so sorry you are going through this! I can say that right after IV drugs my numbers and how I feel is really not the greatest. I personally need to get the meds out of my system , get some better sleep ( no IV's to worry about) and get back to exercising and eating good since the IV's make me loose my appetite a bit. So all in all I basically need to get back to norm and then I start to really feel better!

You can also make sure that her sputum cultures are showing that the drugs she is on are working and are not resistant.

Hang in there! There are so many Ups and Downs with CF it is like a roller coaster so try to just enjoy the ride the best you can and show your daughter that it is okay to feel like crap it is normal but you have to do your BEST to do what you can to get yourself feeling better and you will!!!

Stay well and you can email me a private message if you want to talk more or want to hear more about my experiences growing up with CF and being a girl!

Merry Christmas!

Jennifer 35 years old with CF and CFRD

Not sure what your faith is but I like this quote from Beth Moore: GOD is never late, but he misses a few good opportunities to be early! I also like a verse in the bible that says worrying will not add one day to your life. So I tend to try to leave my worries and concerns at GODS feet and enjoy the times as they come the best that I can.


Hope that helps!
 
G

Giggles

New member
I am so sorry you are going through this! I can say that right after IV drugs my numbers and how I feel is really not the greatest. I personally need to get the meds out of my system , get some better sleep ( no IV's to worry about) and get back to exercising and eating good since the IV's make me loose my appetite a bit. So all in all I basically need to get back to norm and then I start to really feel better!

You can also make sure that her sputum cultures are showing that the drugs she is on are working and are not resistant.

Hang in there! There are so many Ups and Downs with CF it is like a roller coaster so try to just enjoy the ride the best you can and show your daughter that it is okay to feel like crap it is normal but you have to do your BEST to do what you can to get yourself feeling better and you will!!!

Stay well and you can email me a private message if you want to talk more or want to hear more about my experiences growing up with CF and being a girl!

Merry Christmas!

Jennifer 35 years old with CF and CFRD

Not sure what your faith is but I like this quote from Beth Moore: GOD is never late, but he misses a few good opportunities to be early! I also like a verse in the bible that says worrying will not add one day to your life. So I tend to try to leave my worries and concerns at GODS feet and enjoy the times as they come the best that I can.


Hope that helps!
 
G

Giggles

New member
I am so sorry you are going through this! I can say that right after IV drugs my numbers and how I feel is really not the greatest. I personally need to get the meds out of my system , get some better sleep ( no IV's to worry about) and get back to exercising and eating good since the IV's make me loose my appetite a bit. So all in all I basically need to get back to norm and then I start to really feel better!

You can also make sure that her sputum cultures are showing that the drugs she is on are working and are not resistant.

Hang in there! There are so many Ups and Downs with CF it is like a roller coaster so try to just enjoy the ride the best you can and show your daughter that it is okay to feel like crap it is normal but you have to do your BEST to do what you can to get yourself feeling better and you will!!!

Stay well and you can email me a private message if you want to talk more or want to hear more about my experiences growing up with CF and being a girl!

Merry Christmas!

Jennifer 35 years old with CF and CFRD

Not sure what your faith is but I like this quote from Beth Moore: GOD is never late, but he misses a few good opportunities to be early! I also like a verse in the bible that says worrying will not add one day to your life. So I tend to try to leave my worries and concerns at GODS feet and enjoy the times as they come the best that I can.


Hope that helps!
 
L

LeneSouthAfrica

New member
Wow, 5 kids! You sure have a lot on your plate, not even reckoning in the CF, no wonder u are taking strain... I am not a mom, but a fairly healthy CFer who also went thru bad patches, incl lung bleeds that felt like the 'beginning of the end'. I always got better again though, so there really is hope, but as said in posts above it can take time. Sometimes when the going is so smooth we forget what we are dealing with here. Don't deny how you are feeling and definitely confide in your friends/family/personal diary as no-one is wonder woman, and because you need to stay strong and positive for your daughter...it used to make me feel so guilty when my parents broke down during the bad patches. I felt like 'if they can't even handle this, how am I supposed to handle this?' I am not saying anyone should be little miss sunshine (can't kid a CFer), be realistic, but it IS realistic that your daughter could recover a lot of her lung function and go on to live a healthy full life.
Good luck and its a good idea to come here as it is a great way to get support and stay realistic about all aspects of CF
 
L

LeneSouthAfrica

New member
Wow, 5 kids! You sure have a lot on your plate, not even reckoning in the CF, no wonder u are taking strain... I am not a mom, but a fairly healthy CFer who also went thru bad patches, incl lung bleeds that felt like the 'beginning of the end'. I always got better again though, so there really is hope, but as said in posts above it can take time. Sometimes when the going is so smooth we forget what we are dealing with here. Don't deny how you are feeling and definitely confide in your friends/family/personal diary as no-one is wonder woman, and because you need to stay strong and positive for your daughter...it used to make me feel so guilty when my parents broke down during the bad patches. I felt like 'if they can't even handle this, how am I supposed to handle this?' I am not saying anyone should be little miss sunshine (can't kid a CFer), be realistic, but it IS realistic that your daughter could recover a lot of her lung function and go on to live a healthy full life.
Good luck and its a good idea to come here as it is a great way to get support and stay realistic about all aspects of CF
 
L

LeneSouthAfrica

New member
Wow, 5 kids! You sure have a lot on your plate, not even reckoning in the CF, no wonder u are taking strain... I am not a mom, but a fairly healthy CFer who also went thru bad patches, incl lung bleeds that felt like the 'beginning of the end'. I always got better again though, so there really is hope, but as said in posts above it can take time. Sometimes when the going is so smooth we forget what we are dealing with here. Don't deny how you are feeling and definitely confide in your friends/family/personal diary as no-one is wonder woman, and because you need to stay strong and positive for your daughter...it used to make me feel so guilty when my parents broke down during the bad patches. I felt like 'if they can't even handle this, how am I supposed to handle this?' I am not saying anyone should be little miss sunshine (can't kid a CFer), be realistic, but it IS realistic that your daughter could recover a lot of her lung function and go on to live a healthy full life.
Good luck and its a good idea to come here as it is a great way to get support and stay realistic about all aspects of CF
 
L

LeneSouthAfrica

New member
Wow, 5 kids! You sure have a lot on your plate, not even reckoning in the CF, no wonder u are taking strain... I am not a mom, but a fairly healthy CFer who also went thru bad patches, incl lung bleeds that felt like the 'beginning of the end'. I always got better again though, so there really is hope, but as said in posts above it can take time. Sometimes when the going is so smooth we forget what we are dealing with here. Don't deny how you are feeling and definitely confide in your friends/family/personal diary as no-one is wonder woman, and because you need to stay strong and positive for your daughter...it used to make me feel so guilty when my parents broke down during the bad patches. I felt like 'if they can't even handle this, how am I supposed to handle this?' I am not saying anyone should be little miss sunshine (can't kid a CFer), be realistic, but it IS realistic that your daughter could recover a lot of her lung function and go on to live a healthy full life.
Good luck and its a good idea to come here as it is a great way to get support and stay realistic about all aspects of CF
 
L

LeneSouthAfrica

New member
Wow, 5 kids! You sure have a lot on your plate, not even reckoning in the CF, no wonder u are taking strain... I am not a mom, but a fairly healthy CFer who also went thru bad patches, incl lung bleeds that felt like the 'beginning of the end'. I always got better again though, so there really is hope, but as said in posts above it can take time. Sometimes when the going is so smooth we forget what we are dealing with here. Don't deny how you are feeling and definitely confide in your friends/family/personal diary as no-one is wonder woman, and because you need to stay strong and positive for your daughter...it used to make me feel so guilty when my parents broke down during the bad patches. I felt like 'if they can't even handle this, how am I supposed to handle this?' I am not saying anyone should be little miss sunshine (can't kid a CFer), be realistic, but it IS realistic that your daughter could recover a lot of her lung function and go on to live a healthy full life.
Good luck and its a good idea to come here as it is a great way to get support and stay realistic about all aspects of CF
 
K

kayleesgrandma

New member
I just saw this, and my heart goes out to you. I am just starting down the CF road, as my Kaylee cultured for psuedomona. Starting the TOBI thing that I tried to put off...It's the utter feeling of helplessness that I don't like--and there is no one or nothing I can hit--and I want to hit something!!! And scream...

I'm so glad you came here to vent though, and to keep us updated. I hate to think of you going through this alone...There is so much experience here--so many that have gone down this path before you. And the compassion here is something to behold--you need to come often and drink deeply of it. This is a true SUPPORT COMMUNITY, in every sense.

I will be praying for you and your girls...<img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
I just saw this, and my heart goes out to you. I am just starting down the CF road, as my Kaylee cultured for psuedomona. Starting the TOBI thing that I tried to put off...It's the utter feeling of helplessness that I don't like--and there is no one or nothing I can hit--and I want to hit something!!! And scream...

I'm so glad you came here to vent though, and to keep us updated. I hate to think of you going through this alone...There is so much experience here--so many that have gone down this path before you. And the compassion here is something to behold--you need to come often and drink deeply of it. This is a true SUPPORT COMMUNITY, in every sense.

I will be praying for you and your girls...<img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
I just saw this, and my heart goes out to you. I am just starting down the CF road, as my Kaylee cultured for psuedomona. Starting the TOBI thing that I tried to put off...It's the utter feeling of helplessness that I don't like--and there is no one or nothing I can hit--and I want to hit something!!! And scream...

I'm so glad you came here to vent though, and to keep us updated. I hate to think of you going through this alone...There is so much experience here--so many that have gone down this path before you. And the compassion here is something to behold--you need to come often and drink deeply of it. This is a true SUPPORT COMMUNITY, in every sense.

I will be praying for you and your girls...<img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
I just saw this, and my heart goes out to you. I am just starting down the CF road, as my Kaylee cultured for psuedomona. Starting the TOBI thing that I tried to put off...It's the utter feeling of helplessness that I don't like--and there is no one or nothing I can hit--and I want to hit something!!! And scream...

I'm so glad you came here to vent though, and to keep us updated. I hate to think of you going through this alone...There is so much experience here--so many that have gone down this path before you. And the compassion here is something to behold--you need to come often and drink deeply of it. This is a true SUPPORT COMMUNITY, in every sense.

I will be praying for you and your girls...<img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
I just saw this, and my heart goes out to you. I am just starting down the CF road, as my Kaylee cultured for psuedomona. Starting the TOBI thing that I tried to put off...It's the utter feeling of helplessness that I don't like--and there is no one or nothing I can hit--and I want to hit something!!! And scream...

I'm so glad you came here to vent though, and to keep us updated. I hate to think of you going through this alone...There is so much experience here--so many that have gone down this path before you. And the compassion here is something to behold--you need to come often and drink deeply of it. This is a true SUPPORT COMMUNITY, in every sense.

I will be praying for you and your girls...<img src="i/expressions/heart.gif" border="0">
 
A

Asexyblond23

New member
First off know that we are all here for you thu every moment. I am not a parent of a cf child, Im the child here, but I have been thru many ups and downs also. I am actually going thru one of my hardest right now. You have every right to be concerend in seeing that much of a drop, that is a big drop for that short about of time. Every single number that the FEV1 goes down I think inside silently we all cry a little. Dont feel that you arent greatful for the 81% becuase we all know that it is a great number but it is a large drop for her and that isnt her normal level. We all have our normal levels and for her that isnt. There are so many people here that are here for you anytime you need it. CF never seems to be something that works with us but thats why we all have each other. Its good that you let your feelings out, keeping them in would of been harder and worse for you and for everyone. Sometimes we all just need a good cry, thats what I have come to know. Sometimes it all seems so overwhelming and we just need to sit down and cry loud and hard. You are an amazing insperaing woman and you have so much strengh, and at times when you feel that you cant handle things thats when we are here for you.
 
A

Asexyblond23

New member
First off know that we are all here for you thu every moment. I am not a parent of a cf child, Im the child here, but I have been thru many ups and downs also. I am actually going thru one of my hardest right now. You have every right to be concerend in seeing that much of a drop, that is a big drop for that short about of time. Every single number that the FEV1 goes down I think inside silently we all cry a little. Dont feel that you arent greatful for the 81% becuase we all know that it is a great number but it is a large drop for her and that isnt her normal level. We all have our normal levels and for her that isnt. There are so many people here that are here for you anytime you need it. CF never seems to be something that works with us but thats why we all have each other. Its good that you let your feelings out, keeping them in would of been harder and worse for you and for everyone. Sometimes we all just need a good cry, thats what I have come to know. Sometimes it all seems so overwhelming and we just need to sit down and cry loud and hard. You are an amazing insperaing woman and you have so much strengh, and at times when you feel that you cant handle things thats when we are here for you.
 
A

Asexyblond23

New member
First off know that we are all here for you thu every moment. I am not a parent of a cf child, Im the child here, but I have been thru many ups and downs also. I am actually going thru one of my hardest right now. You have every right to be concerend in seeing that much of a drop, that is a big drop for that short about of time. Every single number that the FEV1 goes down I think inside silently we all cry a little. Dont feel that you arent greatful for the 81% becuase we all know that it is a great number but it is a large drop for her and that isnt her normal level. We all have our normal levels and for her that isnt. There are so many people here that are here for you anytime you need it. CF never seems to be something that works with us but thats why we all have each other. Its good that you let your feelings out, keeping them in would of been harder and worse for you and for everyone. Sometimes we all just need a good cry, thats what I have come to know. Sometimes it all seems so overwhelming and we just need to sit down and cry loud and hard. You are an amazing insperaing woman and you have so much strengh, and at times when you feel that you cant handle things thats when we are here for you.
 
A

Asexyblond23

New member
First off know that we are all here for you thu every moment. I am not a parent of a cf child, Im the child here, but I have been thru many ups and downs also. I am actually going thru one of my hardest right now. You have every right to be concerend in seeing that much of a drop, that is a big drop for that short about of time. Every single number that the FEV1 goes down I think inside silently we all cry a little. Dont feel that you arent greatful for the 81% becuase we all know that it is a great number but it is a large drop for her and that isnt her normal level. We all have our normal levels and for her that isnt. There are so many people here that are here for you anytime you need it. CF never seems to be something that works with us but thats why we all have each other. Its good that you let your feelings out, keeping them in would of been harder and worse for you and for everyone. Sometimes we all just need a good cry, thats what I have come to know. Sometimes it all seems so overwhelming and we just need to sit down and cry loud and hard. You are an amazing insperaing woman and you have so much strengh, and at times when you feel that you cant handle things thats when we are here for you.
 
A

Asexyblond23

New member
First off know that we are all here for you thu every moment. I am not a parent of a cf child, Im the child here, but I have been thru many ups and downs also. I am actually going thru one of my hardest right now. You have every right to be concerend in seeing that much of a drop, that is a big drop for that short about of time. Every single number that the FEV1 goes down I think inside silently we all cry a little. Dont feel that you arent greatful for the 81% becuase we all know that it is a great number but it is a large drop for her and that isnt her normal level. We all have our normal levels and for her that isnt. There are so many people here that are here for you anytime you need it. CF never seems to be something that works with us but thats why we all have each other. Its good that you let your feelings out, keeping them in would of been harder and worse for you and for everyone. Sometimes we all just need a good cry, thats what I have come to know. Sometimes it all seems so overwhelming and we just need to sit down and cry loud and hard. You are an amazing insperaing woman and you have so much strengh, and at times when you feel that you cant handle things thats when we are here for you.
 
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