Do you ever feel inadequate?

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shelij

New member
This is the third hospitalization within the past 12 months. My boys are 11 and 4...both CFers. It seems like no matter how hard I try, my boys keep getting sick. I am super-compliant, but I have a nagging feeling that maybe I could have done more. I have Crohn's and I am experiencing a 'flare-up", I am dealing with it by taking Prednisone. I know Prednisone makes my emotions go insanely crazy, having said that....I am having a horrific guilt trip. I just want to hear, from anybody, that this isn't my fault. I try sooooo hard and I feel like the mother from Hell when I force my boys to do their treatments. I cry every time my son has to stop the saline, because he literally gags and vomits all that stinkin mucus.
It is so hard with 2 CFers, should I admit both at the same time...if one goes in, the other is admitted a week later. I hate this so much!
I am struggling so hard to keep myself healthy, this is the first time my Crohn's has flared up during a CF exacerbation. I just don't know what to do. Everybody always want to help by coming up and staying with my son, so I can get away. I don't want to get away...I want to be there for my baby. This just isn't fair!!!
 
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shelij

New member
This is the third hospitalization within the past 12 months. My boys are 11 and 4...both CFers. It seems like no matter how hard I try, my boys keep getting sick. I am super-compliant, but I have a nagging feeling that maybe I could have done more. I have Crohn's and I am experiencing a 'flare-up", I am dealing with it by taking Prednisone. I know Prednisone makes my emotions go insanely crazy, having said that....I am having a horrific guilt trip. I just want to hear, from anybody, that this isn't my fault. I try sooooo hard and I feel like the mother from Hell when I force my boys to do their treatments. I cry every time my son has to stop the saline, because he literally gags and vomits all that stinkin mucus.
It is so hard with 2 CFers, should I admit both at the same time...if one goes in, the other is admitted a week later. I hate this so much!
I am struggling so hard to keep myself healthy, this is the first time my Crohn's has flared up during a CF exacerbation. I just don't know what to do. Everybody always want to help by coming up and staying with my son, so I can get away. I don't want to get away...I want to be there for my baby. This just isn't fair!!!
 
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albino15

New member
This isn't your fault. Even when people do their best, bad things still happen. You just have to remember that even when things in life suck, they can only suck for so long. And I'm sure that EVERYONE has felt inadequate at some time or another. I've been feeling inadequate a lot lately, but it's not directly related to CF.
 
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albino15

New member
This isn't your fault. Even when people do their best, bad things still happen. You just have to remember that even when things in life suck, they can only suck for so long. And I'm sure that EVERYONE has felt inadequate at some time or another. I've been feeling inadequate a lot lately, but it's not directly related to CF.
 
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patrish22

Guest
YOU ARE NOT INADEQUATE! The care for CF children is more than a full time job. I raised 3 w/ CF and I hear your pain. You feel like you live in the hospital sometimes. Remember, this can really be what I call "the crap-shoot disease". There have been time that no matter how compliant your children are, it doesn't guarentee that they won't get sick. I use to get extremely frustrated when going to clinic and would see other CF's who were doing so well, and listening to their parents talk about their great accomplishments. Not that I want to take away from their successes, but sometimes I feel the outside world doesn't get the full picture. I was listening to one woman brag about how her son hasn't been in the hospital in 3 years, while everytime I turned around one of mine was. You are a good mother!!! Listening to coughing and vomiting of mucus (which is good) can be so heart wrenching. It can be so hard to watch others succeed at times, but it is NOT a reflection on you. There will be good days and bad. One of my daughters always struggled while their brother seems to do so much better. I watched one go off to college while the other had to give up her dreams of medical school because she physically could not keep up. There will be times when compliancy will bring great results and times when it may not. Either way, don't give up! Look in the mirror and remember what a strong and good person you are. You and your family have our prayers. Feel free to PM me anytime. Remember, it's the disease, not you!
 
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patrish22

Guest
YOU ARE NOT INADEQUATE! The care for CF children is more than a full time job. I raised 3 w/ CF and I hear your pain. You feel like you live in the hospital sometimes. Remember, this can really be what I call "the crap-shoot disease". There have been time that no matter how compliant your children are, it doesn't guarentee that they won't get sick. I use to get extremely frustrated when going to clinic and would see other CF's who were doing so well, and listening to their parents talk about their great accomplishments. Not that I want to take away from their successes, but sometimes I feel the outside world doesn't get the full picture. I was listening to one woman brag about how her son hasn't been in the hospital in 3 years, while everytime I turned around one of mine was. You are a good mother!!! Listening to coughing and vomiting of mucus (which is good) can be so heart wrenching. It can be so hard to watch others succeed at times, but it is NOT a reflection on you. There will be good days and bad. One of my daughters always struggled while their brother seems to do so much better. I watched one go off to college while the other had to give up her dreams of medical school because she physically could not keep up. There will be times when compliancy will bring great results and times when it may not. Either way, don't give up! Look in the mirror and remember what a strong and good person you are. You and your family have our prayers. Feel free to PM me anytime. Remember, it's the disease, not you!
 
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sdansmith

New member
I'm a father of a little girl with CF. Not only do I feel inadequate at times, but also like a failure. It's part of our life on earth. It isn't fair, and we accept that. But life being unfair (and there is so much more on this topic from my faith point of view) does not mean you are inadequate. Keep fighting, and keep yourself healthy. If you're healthy, you can do more for your boys.
 
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sdansmith

New member
I'm a father of a little girl with CF. Not only do I feel inadequate at times, but also like a failure. It's part of our life on earth. It isn't fair, and we accept that. But life being unfair (and there is so much more on this topic from my faith point of view) does not mean you are inadequate. Keep fighting, and keep yourself healthy. If you're healthy, you can do more for your boys.
 
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khavice

New member
Sheli - I totally get where you are coming from. My daughter had 2 tune ups last year and that was really unusual for us. Kept thinking "What aren't we doing?" Doctor and social worker at clinic really helped me. It's a monster of a disease and sometimes can get the better of you. We all try to be strong for our kids but sometimes we need to lean on others around us. Take a breather and know that you are a good mom. A bad one wouldn't care. I don't have Crohn's and I struggle with the stress that comes with CF. Keep up the good work and know that there are others out there pulling for you.
 
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khavice

New member
Sheli - I totally get where you are coming from. My daughter had 2 tune ups last year and that was really unusual for us. Kept thinking "What aren't we doing?" Doctor and social worker at clinic really helped me. It's a monster of a disease and sometimes can get the better of you. We all try to be strong for our kids but sometimes we need to lean on others around us. Take a breather and know that you are a good mom. A bad one wouldn't care. I don't have Crohn's and I struggle with the stress that comes with CF. Keep up the good work and know that there are others out there pulling for you.
 
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CJPsMom

New member
Your post breaks my heart...and it's something that depending on the day, I could have written myself.
With everything that comes with CF, please don't get down on yourself. We're all doing the best we can and I'm certain you are too. Focus on the good things you're doing and take one minute at a time. Fight to keep those thoughts out of your head as they can be truly debilitating and they're a waste of energy and time.
If you didn't care and weren't doing your best, you wouldn't be posting about it here.
Hang in there and know that there's an entire CF community pulling for you and your children.
 
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CJPsMom

New member
Your post breaks my heart...and it's something that depending on the day, I could have written myself.
With everything that comes with CF, please don't get down on yourself. We're all doing the best we can and I'm certain you are too. Focus on the good things you're doing and take one minute at a time. Fight to keep those thoughts out of your head as they can be truly debilitating and they're a waste of energy and time.
If you didn't care and weren't doing your best, you wouldn't be posting about it here.
Hang in there and know that there's an entire CF community pulling for you and your children.
 
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cgerhardt

New member
Its not your fault I feel the same way.We have had 6 hospital stays in less than 2 years and on our thrid picc line. I have 3 kids that have to do the treatments but my youngest is the one that we have the problems with. I am sure you are overwhelmed with it all. Take a walk and get some fresh air. I know the feeling of not wanting to leave. When people come to the hospital they make me go for a walk and get something to eat it does feel good. Keep up the good work you are a great mom because you do care! You can PM if you would like.
 
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cgerhardt

New member
Its not your fault I feel the same way.We have had 6 hospital stays in less than 2 years and on our thrid picc line. I have 3 kids that have to do the treatments but my youngest is the one that we have the problems with. I am sure you are overwhelmed with it all. Take a walk and get some fresh air. I know the feeling of not wanting to leave. When people come to the hospital they make me go for a walk and get something to eat it does feel good. Keep up the good work you are a great mom because you do care! You can PM if you would like.
 
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stillkickin

New member
Hi Sheli...I'm a 41 year old CF patient without kids, so I can't relate to how helpless CF feels from a parent's point of view. I can say I wouldn't still be here today without my Mom being the strong woman that she is. I'm sorry you have 2 boys with CF and are struggling. I understand that you don't want to see your children sick. Rest assured you are doing everything you can! Keep encouraging your boys to do their treatments. You're a great mom for doing so!

My Mom and Dad had 6 kids, and 3 of us had CF. My Mom instilled the importance of treatments in us at an early age, and I fully believe she's the reason I'm still here. Doing treatments became just as natural as brushing our teeth. Surely it sucked doing them as a kid...but they're why I'm still here. Don't get down on yourself. You are doing everything you can. CF is an unpredictable illness. One thing I recall hearing my Mom say over the years was, "Don't worry until you know there's something to worry about." Possibly that helped her to stay sane? In retrospect, I have no idea how she dealt with 3 sick kids. Possibly she is Wonder Woman? She is in my eyes anyway. Just as you are. Hang in there and vent whenever you need to. We're all cheering for you!
 
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stillkickin

New member
Hi Sheli...I'm a 41 year old CF patient without kids, so I can't relate to how helpless CF feels from a parent's point of view. I can say I wouldn't still be here today without my Mom being the strong woman that she is. I'm sorry you have 2 boys with CF and are struggling. I understand that you don't want to see your children sick. Rest assured you are doing everything you can! Keep encouraging your boys to do their treatments. You're a great mom for doing so!

My Mom and Dad had 6 kids, and 3 of us had CF. My Mom instilled the importance of treatments in us at an early age, and I fully believe she's the reason I'm still here. Doing treatments became just as natural as brushing our teeth. Surely it sucked doing them as a kid...but they're why I'm still here. Don't get down on yourself. You are doing everything you can. CF is an unpredictable illness. One thing I recall hearing my Mom say over the years was, "Don't worry until you know there's something to worry about." Possibly that helped her to stay sane? In retrospect, I have no idea how she dealt with 3 sick kids. Possibly she is Wonder Woman? She is in my eyes anyway. Just as you are. Hang in there and vent whenever you need to. We're all cheering for you!
 
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Rebjane

Super Moderator
Sheli,

I am there with ya! My daughter has had some progression of her CF this past year or two. We had a really good fall with alot of hard work and now we are having issues again. It was only a few months of reprieve...Ugh, Chronic illness takes a toll on all of us. As well as I am in the medical field so, my family, friends(yes even my hubby) think i can handle it. Which I can and do; but it's wears you down. I just wish I could make it all better.
 
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Rebjane

Super Moderator
Sheli,

I am there with ya! My daughter has had some progression of her CF this past year or two. We had a really good fall with alot of hard work and now we are having issues again. It was only a few months of reprieve...Ugh, Chronic illness takes a toll on all of us. As well as I am in the medical field so, my family, friends(yes even my hubby) think i can handle it. Which I can and do; but it's wears you down. I just wish I could make it all better.
 
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Mommafirst

Guest
When everyone tells me my daughter is doing well, there is a tendency to want to feel responsible for that....that all the work and treatments and everything else is making her sooo healthy. But if we take responsibility for the good times, then what do we do in the bad? Ultimately this disease is unpredictable and can really suck. When things are going well, its only in part because of compliance, because we ALL know that even in times of perfect compliance, there is going to be major down times in this disease.

Hang in there. It is NOT your fault.
 
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Mommafirst

Guest
When everyone tells me my daughter is doing well, there is a tendency to want to feel responsible for that....that all the work and treatments and everything else is making her sooo healthy. But if we take responsibility for the good times, then what do we do in the bad? Ultimately this disease is unpredictable and can really suck. When things are going well, its only in part because of compliance, because we ALL know that even in times of perfect compliance, there is going to be major down times in this disease.

Hang in there. It is NOT your fault.
 
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