Mild and Rare Cases...where are you?

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

wow, you guys respond fast!

I totally understand that I'm most likely in a "mild stage" of CF. Don't for a min think I'm naive as to what may come. I keep myself well educated in the realm of CF. I've started doing hypertonic saline a few times a week b/c prevention can't hurt, right? And my running has produced more out of my lungs than any vest might, which is why I keep it up.

I didn't post the question so that people could tell me "you're doing great, enjoy it, you'll eventually get worse" (sorry if anyone takes offense to that paraphrase) I just wondered if others also struggle to truly feel part of the CF community when they're doing so well.

I understand that many of you just wanted to make sure I wasn't in denial of what the future may hold and I know this forum has a history of "telling it like it is" and I appreciate that. I just want to reassure you that even though I may use the term "mild" I am in no way implying that I think it will always be so.

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

And Fred, I can totally relate to "not looking like a normal CFer" (though recently the stereotype is less and less common). I once had a peds doctor ask me if he thought I should get re-tested b/c my FEV1 was so high! (I think my mom walked out on him!)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[lmattaway]

Wanderlost, it was good for me to see that you cultured for PA at 28. It was a good reminder that even though I still only have Staff, anything might pop up at anytime! (Now if only insurance didn't charge so much to inspect our mucus! haha)

 

[JazzysMom]

I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....

 

[JazzysMom]

I understand your feeling of being an "outcast" of sorts. I wasnt dx until I was 7 & although I had terrible digestion issues which led to my dx, I was ok lung wise up until then. Even after dx when I went into the hospital, had hemoptysis, coughed a lot etc. I still felt like I was "different then other CFers".

When I initially joined the forum I was in despair. My life was turned upside down. My health was in the toilet & I thought "maybe" someone here would understand. WHICH THEY DID, but once my health stabilized I went back to feeling like I was "different" then all of "them".

Then my health turned for the worse again, but I never completely bounced back. I returned to this forum & never left. There are CFers here of every spectrum of CF. There are even people here that dont have an official CF dx, but can relate to what we deal with do to their physical struggles.

I am sure at times there is a bit of envy (I will admit its reared is head with me on occaision) when looking at those who havent progressed etc. Yet I am also very happy for them. I think what gets to me is when they take it for granted YET I have been there & done that. It reminds me of when a parent tells you "you will understand when you have your own kids some day" or something to that affect.

OK I have rambled enough.....