Just a crappy day...

brewz2 · Apr 30, 2008

I seem to just be having a really crappy afternoon today, and I figure - where best to have it out than with people that may understand...

We had our CF appt. this afternoon, and it was one of those visits that you just feel overwhelmed with. Meds got swtiched around, we got rid of some, and added in others. They told us that if my daughter's blood work comes back with elevated ieg (?) numbers that they're gonna have to do prednisone and anti-fungal meds for a while. It just infuriates me to know she's got to go through this. It breaks my heart...it's not fair, and i'm just sick of it. It's just one of those days that you want everything to feel "normal" just for once. Then to top it all off, we just happened to notice that she tested pos. for PA again. Once we started looking at some of our paperwork from the clinic, we noticed that she actually cultured PA last visit, and we were never told. So she's been culturing it now since November. Here's the part where my guilt really starts eating at me. As a mom, I want to give her a break every now and then, so we haven't been diligent with her Vest, and we've even let her slip with some of her Tobi treatments - to the point where we actually let her go two months inbetween so we could get her on a schedule of not having to take it at Christmas time (we didn't ask before doing this) Now, I'm blaming myself, and I know I should...I'm just so mad that i've let myself slack when it comes to her vest and tobi..i guess i've learned my lesson, I just pray that my son doesn't culture it now too. I'm just really mad at myself, and i really, really needed to vent to someone - anyone that may possibly understand... it's just been one of those days...and i just need to sun to come up tomorrow.

Tracey, mom to Sydney 7 and Seth both w/cf df508

brewz2 · Apr 30, 2008

I seem to just be having a really crappy afternoon today, and I figure - where best to have it out than with people that may understand...

We had our CF appt. this afternoon, and it was one of those visits that you just feel overwhelmed with. Meds got swtiched around, we got rid of some, and added in others. They told us that if my daughter's blood work comes back with elevated ieg (?) numbers that they're gonna have to do prednisone and anti-fungal meds for a while. It just infuriates me to know she's got to go through this. It breaks my heart...it's not fair, and i'm just sick of it. It's just one of those days that you want everything to feel "normal" just for once. Then to top it all off, we just happened to notice that she tested pos. for PA again. Once we started looking at some of our paperwork from the clinic, we noticed that she actually cultured PA last visit, and we were never told. So she's been culturing it now since November. Here's the part where my guilt really starts eating at me. As a mom, I want to give her a break every now and then, so we haven't been diligent with her Vest, and we've even let her slip with some of her Tobi treatments - to the point where we actually let her go two months inbetween so we could get her on a schedule of not having to take it at Christmas time (we didn't ask before doing this) Now, I'm blaming myself, and I know I should...I'm just so mad that i've let myself slack when it comes to her vest and tobi..i guess i've learned my lesson, I just pray that my son doesn't culture it now too. I'm just really mad at myself, and i really, really needed to vent to someone - anyone that may possibly understand... it's just been one of those days...and i just need to sun to come up tomorrow.

Tracey, mom to Sydney 7 and Seth both w/cf df508

brewz2 · Apr 30, 2008

I seem to just be having a really crappy afternoon today, and I figure - where best to have it out than with people that may understand...

We had our CF appt. this afternoon, and it was one of those visits that you just feel overwhelmed with. Meds got swtiched around, we got rid of some, and added in others. They told us that if my daughter's blood work comes back with elevated ieg (?) numbers that they're gonna have to do prednisone and anti-fungal meds for a while. It just infuriates me to know she's got to go through this. It breaks my heart...it's not fair, and i'm just sick of it. It's just one of those days that you want everything to feel "normal" just for once. Then to top it all off, we just happened to notice that she tested pos. for PA again. Once we started looking at some of our paperwork from the clinic, we noticed that she actually cultured PA last visit, and we were never told. So she's been culturing it now since November. Here's the part where my guilt really starts eating at me. As a mom, I want to give her a break every now and then, so we haven't been diligent with her Vest, and we've even let her slip with some of her Tobi treatments - to the point where we actually let her go two months inbetween so we could get her on a schedule of not having to take it at Christmas time (we didn't ask before doing this) Now, I'm blaming myself, and I know I should...I'm just so mad that i've let myself slack when it comes to her vest and tobi..i guess i've learned my lesson, I just pray that my son doesn't culture it now too. I'm just really mad at myself, and i really, really needed to vent to someone - anyone that may possibly understand... it's just been one of those days...and i just need to sun to come up tomorrow.

Tracey, mom to Sydney 7 and Seth both w/cf df508

brewz2 · Apr 30, 2008

I seem to just be having a really crappy afternoon today, and I figure - where best to have it out than with people that may understand...

We had our CF appt. this afternoon, and it was one of those visits that you just feel overwhelmed with. Meds got swtiched around, we got rid of some, and added in others. They told us that if my daughter's blood work comes back with elevated ieg (?) numbers that they're gonna have to do prednisone and anti-fungal meds for a while. It just infuriates me to know she's got to go through this. It breaks my heart...it's not fair, and i'm just sick of it. It's just one of those days that you want everything to feel "normal" just for once. Then to top it all off, we just happened to notice that she tested pos. for PA again. Once we started looking at some of our paperwork from the clinic, we noticed that she actually cultured PA last visit, and we were never told. So she's been culturing it now since November. Here's the part where my guilt really starts eating at me. As a mom, I want to give her a break every now and then, so we haven't been diligent with her Vest, and we've even let her slip with some of her Tobi treatments - to the point where we actually let her go two months inbetween so we could get her on a schedule of not having to take it at Christmas time (we didn't ask before doing this) Now, I'm blaming myself, and I know I should...I'm just so mad that i've let myself slack when it comes to her vest and tobi..i guess i've learned my lesson, I just pray that my son doesn't culture it now too. I'm just really mad at myself, and i really, really needed to vent to someone - anyone that may possibly understand... it's just been one of those days...and i just need to sun to come up tomorrow.

Tracey, mom to Sydney 7 and Seth both w/cf df508

brewz2 · Apr 30, 2008

I seem to just be having a really crappy afternoon today, and I figure - where best to have it out than with people that may understand...
 
 We had our CF appt. this afternoon, and it was one of those visits that you just feel overwhelmed with. Meds got swtiched around, we got rid of some, and added in others. They told us that if my daughter's blood work comes back with elevated ieg (?) numbers that they're gonna have to do prednisone and anti-fungal meds for a while. It just infuriates me to know she's got to go through this. It breaks my heart...it's not fair, and i'm just sick of it. It's just one of those days that you want everything to feel "normal" just for once. Then to top it all off, we just happened to notice that she tested pos. for PA again. Once we started looking at some of our paperwork from the clinic, we noticed that she actually cultured PA last visit, and we were never told. So she's been culturing it now since November. Here's the part where my guilt really starts eating at me. As a mom, I want to give her a break every now and then, so we haven't been diligent with her Vest, and we've even let her slip with some of her Tobi treatments - to the point where we actually let her go two months inbetween so we could get her on a schedule of not having to take it at Christmas time (we didn't ask before doing this) Now, I'm blaming myself, and I know I should...I'm just so mad that i've let myself slack when it comes to her vest and tobi..i guess i've learned my lesson, I just pray that my son doesn't culture it now too. I'm just really mad at myself, and i really, really needed to vent to someone - anyone that may possibly understand... it's just been one of those days...and i just need to sun to come up tomorrow.
 
 Tracey, mom to Sydney 7 and Seth both w/cf df508

pjspiegle · Apr 30, 2008

Hey Tracey,

First of all you really cannot think that way about the missed treatments because if you do who and what do you blame when you do everything you are suppose to exactly right and they still grow something, something worse or bigger. We all have to remember the importance of the vest and tobi, it is important, but you can't blame yourself either because it could have happened even if you had done every single treatment every single time, I know, I've been in both those places.

Just a FYI, the pred and anti-fungal if her IGE levels are up is most likely ABPA (AKA: Aspergillis), at least that is what the normal treatment for aspergillis is, we have been treating it for almost two years now.

I soooooooooooo understand your day, have had a few of them myself.

Oh yeah, the PA is something that grows out very frequently and does not always get treated unless there are symptoms with it such as an increase in the cough. It is one that is almost impossible to get rid of completely.

I know it is easier said than done, but try not to beat yourself up. It is very likely that it would happen regardless, it is what it is most all the time.

Forget about the what ifs, should ofs, and focus on moving forward from here on out. I know, I know, easier said than done. Probably should take my own advice!

LOL, Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!

Patty

pjspiegle · Apr 30, 2008

Hey Tracey,

First of all you really cannot think that way about the missed treatments because if you do who and what do you blame when you do everything you are suppose to exactly right and they still grow something, something worse or bigger. We all have to remember the importance of the vest and tobi, it is important, but you can't blame yourself either because it could have happened even if you had done every single treatment every single time, I know, I've been in both those places.

Just a FYI, the pred and anti-fungal if her IGE levels are up is most likely ABPA (AKA: Aspergillis), at least that is what the normal treatment for aspergillis is, we have been treating it for almost two years now.

I soooooooooooo understand your day, have had a few of them myself.

Oh yeah, the PA is something that grows out very frequently and does not always get treated unless there are symptoms with it such as an increase in the cough. It is one that is almost impossible to get rid of completely.

I know it is easier said than done, but try not to beat yourself up. It is very likely that it would happen regardless, it is what it is most all the time.

Forget about the what ifs, should ofs, and focus on moving forward from here on out. I know, I know, easier said than done. Probably should take my own advice!

LOL, Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!

Patty

pjspiegle · Apr 30, 2008

Hey Tracey,

First of all you really cannot think that way about the missed treatments because if you do who and what do you blame when you do everything you are suppose to exactly right and they still grow something, something worse or bigger. We all have to remember the importance of the vest and tobi, it is important, but you can't blame yourself either because it could have happened even if you had done every single treatment every single time, I know, I've been in both those places.

Just a FYI, the pred and anti-fungal if her IGE levels are up is most likely ABPA (AKA: Aspergillis), at least that is what the normal treatment for aspergillis is, we have been treating it for almost two years now.

I soooooooooooo understand your day, have had a few of them myself.

Oh yeah, the PA is something that grows out very frequently and does not always get treated unless there are symptoms with it such as an increase in the cough. It is one that is almost impossible to get rid of completely.

I know it is easier said than done, but try not to beat yourself up. It is very likely that it would happen regardless, it is what it is most all the time.

Forget about the what ifs, should ofs, and focus on moving forward from here on out. I know, I know, easier said than done. Probably should take my own advice!

LOL, Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!

Patty

pjspiegle · Apr 30, 2008

Hey Tracey,

First of all you really cannot think that way about the missed treatments because if you do who and what do you blame when you do everything you are suppose to exactly right and they still grow something, something worse or bigger. We all have to remember the importance of the vest and tobi, it is important, but you can't blame yourself either because it could have happened even if you had done every single treatment every single time, I know, I've been in both those places.

Just a FYI, the pred and anti-fungal if her IGE levels are up is most likely ABPA (AKA: Aspergillis), at least that is what the normal treatment for aspergillis is, we have been treating it for almost two years now.

I soooooooooooo understand your day, have had a few of them myself.

Oh yeah, the PA is something that grows out very frequently and does not always get treated unless there are symptoms with it such as an increase in the cough. It is one that is almost impossible to get rid of completely.

I know it is easier said than done, but try not to beat yourself up. It is very likely that it would happen regardless, it is what it is most all the time.

Forget about the what ifs, should ofs, and focus on moving forward from here on out. I know, I know, easier said than done. Probably should take my own advice!

LOL, Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!

Patty

pjspiegle · Apr 30, 2008

Hey Tracey,
 
 First of all you really cannot think that way about the missed treatments because if you do who and what do you blame when you do everything you are suppose to exactly right and they still grow something, something worse or bigger. We all have to remember the importance of the vest and tobi, it is important, but you can't blame yourself either because it could have happened even if you had done every single treatment every single time, I know, I've been in both those places.
 
 Just a FYI, the pred and anti-fungal if her IGE levels are up is most likely ABPA (AKA: Aspergillis), at least that is what the normal treatment for aspergillis is, we have been treating it for almost two years now.
 
 I soooooooooooo understand your day, have had a few of them myself.
 
 Oh yeah, the PA is something that grows out very frequently and does not always get treated unless there are symptoms with it such as an increase in the cough. It is one that is almost impossible to get rid of completely.
 
 I know it is easier said than done, but try not to beat yourself up. It is very likely that it would happen regardless, it is what it is most all the time.
 
 Forget about the what ifs, should ofs, and focus on moving forward from here on out. I know, I know, easier said than done. Probably should take my own advice!
 
 LOL, Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
 
 Patty

MargaritaChic · May 1, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: pjspiegle
Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
Patty</end quote></div>

Ditto. Some days I cry and my husband asks me why. All I can tell him is "because".

CF sucks! It sucks that our babies have to deal with this. It sucks that we can't make them all better.

I wish there was something I could say something to ease your heart. I can't. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But I can tell you that I understand how you feel.

Hugs
Marla

MargaritaChic · May 1, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: pjspiegle
Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
Patty</end quote></div>

Ditto. Some days I cry and my husband asks me why. All I can tell him is "because".

CF sucks! It sucks that our babies have to deal with this. It sucks that we can't make them all better.

I wish there was something I could say something to ease your heart. I can't. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But I can tell you that I understand how you feel.

Hugs
Marla

MargaritaChic · May 1, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: pjspiegle
Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
Patty</end quote></div>

Ditto. Some days I cry and my husband asks me why. All I can tell him is "because".

CF sucks! It sucks that our babies have to deal with this. It sucks that we can't make them all better.

I wish there was something I could say something to ease your heart. I can't. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But I can tell you that I understand how you feel.

Hugs
Marla

MargaritaChic · May 1, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: pjspiegle
Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
Patty</end quote>

Ditto. Some days I cry and my husband asks me why. All I can tell him is "because".

CF sucks! It sucks that our babies have to deal with this. It sucks that we can't make them all better.

I wish there was something I could say something to ease your heart. I can't. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But I can tell you that I understand how you feel.

Hugs
Marla

MargaritaChic · May 1, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: pjspiegle
 Vent all you want. If nothing else it helps the rest of us know we are not alone. I think we all have days like this from time to time. It is so nice to have a place to go vent where others get it though!
 Patty</end quote>
 
 Ditto. Some days I cry and my husband asks me why. All I can tell him is "because".
 
 CF sucks! It sucks that our babies have to deal with this. It sucks that we can't make them all better.
 
 I wish there was something I could say something to ease your heart. I can't. <img src="i/expressions/face-icon-small-sad.gif" border="0"> But I can tell you that I understand how you feel.
 
 Hugs
 Marla

zeeannie · May 1, 2008

I know how you feel about the missed treatments and how hard it is to stay vigilant with that stuff. My husband and I decided that guilt on top of everything else is sooo counterproductive, so we never miss treatments - anymore - and we keep things clean, we control what can and don't sweat what we can't, and if she gets sick anyway, we know it's not because we didn't do everything we know how to do. That way, we don't waste the emotional energy on guilt trippin' and just buckle down and deal with what we have to.

Sending very sunny vibes to you for tomorrow! It always gets better eventually.

zeeannie · May 1, 2008

I know how you feel about the missed treatments and how hard it is to stay vigilant with that stuff. My husband and I decided that guilt on top of everything else is sooo counterproductive, so we never miss treatments - anymore - and we keep things clean, we control what can and don't sweat what we can't, and if she gets sick anyway, we know it's not because we didn't do everything we know how to do. That way, we don't waste the emotional energy on guilt trippin' and just buckle down and deal with what we have to.

Sending very sunny vibes to you for tomorrow! It always gets better eventually.

zeeannie · May 1, 2008

I know how you feel about the missed treatments and how hard it is to stay vigilant with that stuff. My husband and I decided that guilt on top of everything else is sooo counterproductive, so we never miss treatments - anymore - and we keep things clean, we control what can and don't sweat what we can't, and if she gets sick anyway, we know it's not because we didn't do everything we know how to do. That way, we don't waste the emotional energy on guilt trippin' and just buckle down and deal with what we have to.

Sending very sunny vibes to you for tomorrow! It always gets better eventually.

zeeannie · May 1, 2008

I know how you feel about the missed treatments and how hard it is to stay vigilant with that stuff. My husband and I decided that guilt on top of everything else is sooo counterproductive, so we never miss treatments - anymore - and we keep things clean, we control what can and don't sweat what we can't, and if she gets sick anyway, we know it's not because we didn't do everything we know how to do. That way, we don't waste the emotional energy on guilt trippin' and just buckle down and deal with what we have to.

Sending very sunny vibes to you for tomorrow! It always gets better eventually.

zeeannie · May 1, 2008

I know how you feel about the missed treatments and how hard it is to stay vigilant with that stuff. My husband and I decided that guilt on top of everything else is sooo counterproductive, so we never miss treatments - anymore - and we keep things clean, we control what can and don't sweat what we can't, and if she gets sick anyway, we know it's not because we didn't do everything we know how to do. That way, we don't waste the emotional energy on guilt trippin' and just buckle down and deal with what we have to.
 
 Sending very sunny vibes to you for tomorrow! It always gets better eventually.

Just a crappy day...

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