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[JazzysMom]

It is difficult on the kids. I remember my daughter saying to me "how much longer do you have to do your treatments" (meaning vest, nebulizer etc).

I was quite puzzled & realized that she thought it was like my home iv's where after a certain amount of time it would be over.

I looked at her & said....Honey this stuff never ends & she said "no really mom". I wanted to cry!

We had a rough 2 years with my daughter in school while my health was really unstable. This year has been much better as has my health.

She worries & I cant change that. I just try to be strong & show her that although I cant do what I use to....I am still her Mom that loves her.

I include her in my treatments when I can which makes her feel like she is contributing. I even did that when she was your daughters age when I was on iv's.

Its all an adjustment. Just take one day at a time!

HUGS

 

[JazzysMom]

It is difficult on the kids. I remember my daughter saying to me "how much longer do you have to do your treatments" (meaning vest, nebulizer etc).

I was quite puzzled & realized that she thought it was like my home iv's where after a certain amount of time it would be over.

I looked at her & said....Honey this stuff never ends & she said "no really mom". I wanted to cry!

We had a rough 2 years with my daughter in school while my health was really unstable. This year has been much better as has my health.

She worries & I cant change that. I just try to be strong & show her that although I cant do what I use to....I am still her Mom that loves her.

I include her in my treatments when I can which makes her feel like she is contributing. I even did that when she was your daughters age when I was on iv's.

Its all an adjustment. Just take one day at a time!

HUGS

 

[JazzysMom]

It is difficult on the kids. I remember my daughter saying to me "how much longer do you have to do your treatments" (meaning vest, nebulizer etc).

I was quite puzzled & realized that she thought it was like my home iv's where after a certain amount of time it would be over.

I looked at her & said....Honey this stuff never ends & she said "no really mom". I wanted to cry!

We had a rough 2 years with my daughter in school while my health was really unstable. This year has been much better as has my health.

She worries & I cant change that. I just try to be strong & show her that although I cant do what I use to....I am still her Mom that loves her.

I include her in my treatments when I can which makes her feel like she is contributing. I even did that when she was your daughters age when I was on iv's.

Its all an adjustment. Just take one day at a time!

HUGS

 

[JazzysMom]

It is difficult on the kids. I remember my daughter saying to me "how much longer do you have to do your treatments" (meaning vest, nebulizer etc).

I was quite puzzled & realized that she thought it was like my home iv's where after a certain amount of time it would be over.

I looked at her & said....Honey this stuff never ends & she said "no really mom". I wanted to cry!

We had a rough 2 years with my daughter in school while my health was really unstable. This year has been much better as has my health.

She worries & I cant change that. I just try to be strong & show her that although I cant do what I use to....I am still her Mom that loves her.

I include her in my treatments when I can which makes her feel like she is contributing. I even did that when she was your daughters age when I was on iv's.

Its all an adjustment. Just take one day at a time!

HUGS

 

[JazzysMom]

It is difficult on the kids. I remember my daughter saying to me "how much longer do you have to do your treatments" (meaning vest, nebulizer etc).
<br />
<br /> I was quite puzzled & realized that she thought it was like my home iv's where after a certain amount of time it would be over.
<br />
<br />I looked at her & said....Honey this stuff never ends & she said "no really mom". I wanted to cry!
<br />
<br />We had a rough 2 years with my daughter in school while my health was really unstable. This year has been much better as has my health.
<br />
<br />She worries & I cant change that. I just try to be strong & show her that although I cant do what I use to....I am still her Mom that loves her.
<br />
<br />I include her in my treatments when I can which makes her feel like she is contributing. I even did that when she was your daughters age when I was on iv's.
<br />
<br />Its all an adjustment. Just take one day at a time!
<br />
<br />HUGS

 

[ClaireBear]

My daughter gets a kick out of the nebulizer. She thinks it makes me part dragon.
She's a little riot with my local doctor, she's schooled him a few times on "my mommy doesn't fell good, you make her better now"....not said as a request, more demanding.
Then again mommy is a redhead, daddy's a Marine, she was doomed from the get-go on her temper. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ClaireBear]

My daughter gets a kick out of the nebulizer. She thinks it makes me part dragon.
She's a little riot with my local doctor, she's schooled him a few times on "my mommy doesn't fell good, you make her better now"....not said as a request, more demanding.
Then again mommy is a redhead, daddy's a Marine, she was doomed from the get-go on her temper. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ClaireBear]

My daughter gets a kick out of the nebulizer. She thinks it makes me part dragon.
She's a little riot with my local doctor, she's schooled him a few times on "my mommy doesn't fell good, you make her better now"....not said as a request, more demanding.
Then again mommy is a redhead, daddy's a Marine, she was doomed from the get-go on her temper. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ClaireBear]

My daughter gets a kick out of the nebulizer. She thinks it makes me part dragon.
She's a little riot with my local doctor, she's schooled him a few times on "my mommy doesn't fell good, you make her better now"....not said as a request, more demanding.
Then again mommy is a redhead, daddy's a Marine, she was doomed from the get-go on her temper. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ClaireBear]

My daughter gets a kick out of the nebulizer. She thinks it makes me part dragon.
<br />She's a little riot with my local doctor, she's schooled him a few times on "my mommy doesn't fell good, you make her better now"....not said as a request, more demanding.
<br />Then again mommy is a redhead, daddy's a Marine, she was doomed from the get-go on her temper. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JORDYSMOM]

Hi ClaireBear. Welcome to the site. I'm sorry you are going through so much, but as you said, it's good to finally have an answer. My son was 15 before he was diagnosed. His health has definitely improved since then.

I think your sense of humor is just fine, but then that's coming from another red headed, green eyed Irish/Cherokee with just enough German to make stubborn an understatement.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I look forward to getting to know you better. Please keep us posted on you.

Stacey

 

[JORDYSMOM]

Hi ClaireBear. Welcome to the site. I'm sorry you are going through so much, but as you said, it's good to finally have an answer. My son was 15 before he was diagnosed. His health has definitely improved since then.

I think your sense of humor is just fine, but then that's coming from another red headed, green eyed Irish/Cherokee with just enough German to make stubborn an understatement.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I look forward to getting to know you better. Please keep us posted on you.

Stacey

 

[JORDYSMOM]

Hi ClaireBear. Welcome to the site. I'm sorry you are going through so much, but as you said, it's good to finally have an answer. My son was 15 before he was diagnosed. His health has definitely improved since then.

I think your sense of humor is just fine, but then that's coming from another red headed, green eyed Irish/Cherokee with just enough German to make stubborn an understatement.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I look forward to getting to know you better. Please keep us posted on you.

Stacey

 

[JORDYSMOM]

Hi ClaireBear. Welcome to the site. I'm sorry you are going through so much, but as you said, it's good to finally have an answer. My son was 15 before he was diagnosed. His health has definitely improved since then.

I think your sense of humor is just fine, but then that's coming from another red headed, green eyed Irish/Cherokee with just enough German to make stubborn an understatement.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I look forward to getting to know you better. Please keep us posted on you.

Stacey

 

[JORDYSMOM]

Hi ClaireBear. Welcome to the site. I'm sorry you are going through so much, but as you said, it's good to finally have an answer. My son was 15 before he was diagnosed. His health has definitely improved since then.
<br />
<br />I think your sense of humor is just fine, but then that's coming from another red headed, green eyed Irish/Cherokee with just enough German to make stubborn an understatement.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I look forward to getting to know you better. Please keep us posted on you.
<br />
<br />Stacey

 

[ClaireBear]

So, my first "CF Doctor" visit was a bust. I went to who I was told was part of the care center in Evansville IN....Turns out he's not. They have a pediatric center and the CF Foundation said they have an adult outreach clinic...Well the only adult patients they see are existing, former pediatric patients.
So I wound up taking off work, drove 6 hours round trip and saw a doctor who didn't know his bum from a hole in the ground. His opinion was that "I don't want you to have CF so I'm not going to treat you as having it". Translation: "I'm gonna prescribe you anti-diarrheal medicine and fiber supplements and not listen to you when you tell me you've had numerous colon infections from obstructions so I wouldn't know that this treatment would actually make you feel a million times worse".
Do I sound bitter?
I am.
An hour of a doctor not listening. I took all my labs/ reports from the past 3 years and the only one he read, he asked me to explain. Didn't even notice the last CT scan showing the bases of both my lungs are collapsed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
So, with the $40 copay, 50 in gas and 80 from a lost day at work.... I'm out a lot for getting fed a bunch of crap.
Good news is I've found a lovely doctor in St Louis who is helping me even though i temporarily can't afford to come to his office. He prescribed Creon and by day 3 I feel better in that dept than I have in years and years and years.
Blah. Rant, rave, I guess I'm still a little bitter over Evansville but I've filed complaints with everyone that I could think of and that helps....a little.

 

[ClaireBear]

So, my first "CF Doctor" visit was a bust. I went to who I was told was part of the care center in Evansville IN....Turns out he's not. They have a pediatric center and the CF Foundation said they have an adult outreach clinic...Well the only adult patients they see are existing, former pediatric patients.
So I wound up taking off work, drove 6 hours round trip and saw a doctor who didn't know his bum from a hole in the ground. His opinion was that "I don't want you to have CF so I'm not going to treat you as having it". Translation: "I'm gonna prescribe you anti-diarrheal medicine and fiber supplements and not listen to you when you tell me you've had numerous colon infections from obstructions so I wouldn't know that this treatment would actually make you feel a million times worse".
Do I sound bitter?
I am.
An hour of a doctor not listening. I took all my labs/ reports from the past 3 years and the only one he read, he asked me to explain. Didn't even notice the last CT scan showing the bases of both my lungs are collapsed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
So, with the $40 copay, 50 in gas and 80 from a lost day at work.... I'm out a lot for getting fed a bunch of crap.
Good news is I've found a lovely doctor in St Louis who is helping me even though i temporarily can't afford to come to his office. He prescribed Creon and by day 3 I feel better in that dept than I have in years and years and years.
Blah. Rant, rave, I guess I'm still a little bitter over Evansville but I've filed complaints with everyone that I could think of and that helps....a little.

 

[ClaireBear]

So, my first "CF Doctor" visit was a bust. I went to who I was told was part of the care center in Evansville IN....Turns out he's not. They have a pediatric center and the CF Foundation said they have an adult outreach clinic...Well the only adult patients they see are existing, former pediatric patients.
So I wound up taking off work, drove 6 hours round trip and saw a doctor who didn't know his bum from a hole in the ground. His opinion was that "I don't want you to have CF so I'm not going to treat you as having it". Translation: "I'm gonna prescribe you anti-diarrheal medicine and fiber supplements and not listen to you when you tell me you've had numerous colon infections from obstructions so I wouldn't know that this treatment would actually make you feel a million times worse".
Do I sound bitter?
I am.
An hour of a doctor not listening. I took all my labs/ reports from the past 3 years and the only one he read, he asked me to explain. Didn't even notice the last CT scan showing the bases of both my lungs are collapsed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
So, with the $40 copay, 50 in gas and 80 from a lost day at work.... I'm out a lot for getting fed a bunch of crap.
Good news is I've found a lovely doctor in St Louis who is helping me even though i temporarily can't afford to come to his office. He prescribed Creon and by day 3 I feel better in that dept than I have in years and years and years.
Blah. Rant, rave, I guess I'm still a little bitter over Evansville but I've filed complaints with everyone that I could think of and that helps....a little.

 

[ClaireBear]

So, my first "CF Doctor" visit was a bust. I went to who I was told was part of the care center in Evansville IN....Turns out he's not. They have a pediatric center and the CF Foundation said they have an adult outreach clinic...Well the only adult patients they see are existing, former pediatric patients.
So I wound up taking off work, drove 6 hours round trip and saw a doctor who didn't know his bum from a hole in the ground. His opinion was that "I don't want you to have CF so I'm not going to treat you as having it". Translation: "I'm gonna prescribe you anti-diarrheal medicine and fiber supplements and not listen to you when you tell me you've had numerous colon infections from obstructions so I wouldn't know that this treatment would actually make you feel a million times worse".
Do I sound bitter?
I am.
An hour of a doctor not listening. I took all my labs/ reports from the past 3 years and the only one he read, he asked me to explain. Didn't even notice the last CT scan showing the bases of both my lungs are collapsed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
So, with the $40 copay, 50 in gas and 80 from a lost day at work.... I'm out a lot for getting fed a bunch of crap.
Good news is I've found a lovely doctor in St Louis who is helping me even though i temporarily can't afford to come to his office. He prescribed Creon and by day 3 I feel better in that dept than I have in years and years and years.
Blah. Rant, rave, I guess I'm still a little bitter over Evansville but I've filed complaints with everyone that I could think of and that helps....a little.

 

[ClaireBear]

So, my first "CF Doctor" visit was a bust. I went to who I was told was part of the care center in Evansville IN....Turns out he's not. They have a pediatric center and the CF Foundation said they have an adult outreach clinic...Well the only adult patients they see are existing, former pediatric patients.
<br />So I wound up taking off work, drove 6 hours round trip and saw a doctor who didn't know his bum from a hole in the ground. His opinion was that "I don't want you to have CF so I'm not going to treat you as having it". Translation: "I'm gonna prescribe you anti-diarrheal medicine and fiber supplements and not listen to you when you tell me you've had numerous colon infections from obstructions so I wouldn't know that this treatment would actually make you feel a million times worse".
<br />Do I sound bitter?
<br />I am.
<br />An hour of a doctor not listening. I took all my labs/ reports from the past 3 years and the only one he read, he asked me to explain. Didn't even notice the last CT scan showing the bases of both my lungs are collapsed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />So, with the $40 copay, 50 in gas and 80 from a lost day at work.... I'm out a lot for getting fed a bunch of crap.
<br />Good news is I've found a lovely doctor in St Louis who is helping me even though i temporarily can't afford to come to his office. He prescribed Creon and by day 3 I feel better in that dept than I have in years and years and years.
<br />Blah. Rant, rave, I guess I'm still a little bitter over Evansville but I've filed complaints with everyone that I could think of and that helps....a little.