U don't look like u have CF

J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Playswithpixels</b></i>

during my first appointment with this new Doctor he looks right at me and ask "When did you catch CF?" I just smiled and told him the story of how my parents met and of the night I was conceived.

Andrea 32 w/ CF</end quote></div>

This just reminded me that the disability doctor (the one paid by social security) that I went to for my medical evaluation upon my disability application asked me the same thing.

Right there I knew I was going to get denied the first time around. Scary thing is that she is an Asmtha specialist. Maybe she misspoke or maybe she didnt really know. Either way it leaves you feeling uneasy!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Playswithpixels</b></i>

during my first appointment with this new Doctor he looks right at me and ask "When did you catch CF?" I just smiled and told him the story of how my parents met and of the night I was conceived.

Andrea 32 w/ CF</end quote></div>

This just reminded me that the disability doctor (the one paid by social security) that I went to for my medical evaluation upon my disability application asked me the same thing.

Right there I knew I was going to get denied the first time around. Scary thing is that she is an Asmtha specialist. Maybe she misspoke or maybe she didnt really know. Either way it leaves you feeling uneasy!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Playswithpixels</b></i>

during my first appointment with this new Doctor he looks right at me and ask "When did you catch CF?" I just smiled and told him the story of how my parents met and of the night I was conceived.

Andrea 32 w/ CF</end quote></div>

This just reminded me that the disability doctor (the one paid by social security) that I went to for my medical evaluation upon my disability application asked me the same thing.

Right there I knew I was going to get denied the first time around. Scary thing is that she is an Asmtha specialist. Maybe she misspoke or maybe she didnt really know. Either way it leaves you feeling uneasy!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Playswithpixels</b></i>

during my first appointment with this new Doctor he looks right at me and ask "When did you catch CF?" I just smiled and told him the story of how my parents met and of the night I was conceived.

Andrea 32 w/ CF</end quote>

This just reminded me that the disability doctor (the one paid by social security) that I went to for my medical evaluation upon my disability application asked me the same thing.

Right there I knew I was going to get denied the first time around. Scary thing is that she is an Asmtha specialist. Maybe she misspoke or maybe she didnt really know. Either way it leaves you feeling uneasy!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Playswithpixels</b></i>

during my first appointment with this new Doctor he looks right at me and ask "When did you catch CF?" I just smiled and told him the story of how my parents met and of the night I was conceived.

Andrea 32 w/ CF</end quote>

This just reminded me that the disability doctor (the one paid by social security) that I went to for my medical evaluation upon my disability application asked me the same thing.

Right there I knew I was going to get denied the first time around. Scary thing is that she is an Asmtha specialist. Maybe she misspoke or maybe she didnt really know. Either way it leaves you feeling uneasy!
 
L

lightNlife

New member
I had trouble with campus police too with my placard. As personal vindication, I give people a hard time who park in the blue zones without a placard. I don't care how big they are, I NEED to park close to the entrance of the grocery store or all I'll be able to carry back to my car is a loaf of bread and maybe a bunch of bananas.
 
L

lightNlife

New member
I had trouble with campus police too with my placard. As personal vindication, I give people a hard time who park in the blue zones without a placard. I don't care how big they are, I NEED to park close to the entrance of the grocery store or all I'll be able to carry back to my car is a loaf of bread and maybe a bunch of bananas.
 
L

lightNlife

New member
I had trouble with campus police too with my placard. As personal vindication, I give people a hard time who park in the blue zones without a placard. I don't care how big they are, I NEED to park close to the entrance of the grocery store or all I'll be able to carry back to my car is a loaf of bread and maybe a bunch of bananas.
 
L

lightNlife

New member
I had trouble with campus police too with my placard. As personal vindication, I give people a hard time who park in the blue zones without a placard. I don't care how big they are, I NEED to park close to the entrance of the grocery store or all I'll be able to carry back to my car is a loaf of bread and maybe a bunch of bananas.
 
L

lightNlife

New member
I had trouble with campus police too with my placard. As personal vindication, I give people a hard time who park in the blue zones without a placard. I don't care how big they are, I NEED to park close to the entrance of the grocery store or all I'll be able to carry back to my car is a loaf of bread and maybe a bunch of bananas.
 
C

coltsfan715

New member
Man oh Man. I love this one cause I have always gotten this one. The most amusing ones for me were the comments that I got last year when I was spiralling downward and going through the transplant eval. I had a home health nurse come to my house and she just kept going on and on about how wonderful I looked and how I didn't look sick and she never would have thought and how healthy I must be and blah blah. I couldn't help but chuckle to myself and think - IF YOU ONLY KNEW!

Otherwise I used to get the blank stare from nurses - followed with "what are you here for?", "You don't need to be here", "You are too healthy to be here". I just would look at them and say yeah well I have CF and have a lung infection so I do kind of need to be here. Again nothing beats the insurance paid vacation.

As for the when did you get CF or catch CF thing - I just respond with this ... I have HAD CF since BIRTH but I was diagnosed on emy first birthday. That way I make sure to point out that I didn't just catch it or develop it.

I think what bothered me most is when I would have RTs argue with me on how to do nebs or CPT or they would say I didn't need CPT. That irked the $#!t out of me. I would just say ... seriously that is the main reason I am here cause I can do the rest of this on my own instead of paying you for it.

The handicapped placard thing - When I first got mine I almost wanted to walk with a limp when I got out of my car lol. I was so incredibly tempted to just drag my leg or something lol. I never did but oh so tempting. After a short while I just got tired of caring - that and I found that if you get out of the car with this "I DARE you to say something" or the "Say something (anything) and I'll kick your ass"(even if it means you have to beat them with a lightweight object lol) look people tend to refrain from making comments. At least it worked for me - I find that people won't say anything if they think you will make them look like an a$$hole if they do.

Now I find my biggest struggle is getting people to understand that just because I had a transplant does NOT mean I am cured of CF. I still have the NON lung issues - like digestion and diabetes and such. Everyone at my center (because few of them actually have CF) keeps saying oh now you don't have CF anymore or this one which annoys me .... what was it like when you HAD CF? Um ... you mean before I was transplanted cause I still HAVE CF lol.

Take Care and thanks for some laughs.
Linds
 
C

coltsfan715

New member
Man oh Man. I love this one cause I have always gotten this one. The most amusing ones for me were the comments that I got last year when I was spiralling downward and going through the transplant eval. I had a home health nurse come to my house and she just kept going on and on about how wonderful I looked and how I didn't look sick and she never would have thought and how healthy I must be and blah blah. I couldn't help but chuckle to myself and think - IF YOU ONLY KNEW!

Otherwise I used to get the blank stare from nurses - followed with "what are you here for?", "You don't need to be here", "You are too healthy to be here". I just would look at them and say yeah well I have CF and have a lung infection so I do kind of need to be here. Again nothing beats the insurance paid vacation.

As for the when did you get CF or catch CF thing - I just respond with this ... I have HAD CF since BIRTH but I was diagnosed on emy first birthday. That way I make sure to point out that I didn't just catch it or develop it.

I think what bothered me most is when I would have RTs argue with me on how to do nebs or CPT or they would say I didn't need CPT. That irked the $#!t out of me. I would just say ... seriously that is the main reason I am here cause I can do the rest of this on my own instead of paying you for it.

The handicapped placard thing - When I first got mine I almost wanted to walk with a limp when I got out of my car lol. I was so incredibly tempted to just drag my leg or something lol. I never did but oh so tempting. After a short while I just got tired of caring - that and I found that if you get out of the car with this "I DARE you to say something" or the "Say something (anything) and I'll kick your ass"(even if it means you have to beat them with a lightweight object lol) look people tend to refrain from making comments. At least it worked for me - I find that people won't say anything if they think you will make them look like an a$$hole if they do.

Now I find my biggest struggle is getting people to understand that just because I had a transplant does NOT mean I am cured of CF. I still have the NON lung issues - like digestion and diabetes and such. Everyone at my center (because few of them actually have CF) keeps saying oh now you don't have CF anymore or this one which annoys me .... what was it like when you HAD CF? Um ... you mean before I was transplanted cause I still HAVE CF lol.

Take Care and thanks for some laughs.
Linds
 
C

coltsfan715

New member
Man oh Man. I love this one cause I have always gotten this one. The most amusing ones for me were the comments that I got last year when I was spiralling downward and going through the transplant eval. I had a home health nurse come to my house and she just kept going on and on about how wonderful I looked and how I didn't look sick and she never would have thought and how healthy I must be and blah blah. I couldn't help but chuckle to myself and think - IF YOU ONLY KNEW!

Otherwise I used to get the blank stare from nurses - followed with "what are you here for?", "You don't need to be here", "You are too healthy to be here". I just would look at them and say yeah well I have CF and have a lung infection so I do kind of need to be here. Again nothing beats the insurance paid vacation.

As for the when did you get CF or catch CF thing - I just respond with this ... I have HAD CF since BIRTH but I was diagnosed on emy first birthday. That way I make sure to point out that I didn't just catch it or develop it.

I think what bothered me most is when I would have RTs argue with me on how to do nebs or CPT or they would say I didn't need CPT. That irked the $#!t out of me. I would just say ... seriously that is the main reason I am here cause I can do the rest of this on my own instead of paying you for it.

The handicapped placard thing - When I first got mine I almost wanted to walk with a limp when I got out of my car lol. I was so incredibly tempted to just drag my leg or something lol. I never did but oh so tempting. After a short while I just got tired of caring - that and I found that if you get out of the car with this "I DARE you to say something" or the "Say something (anything) and I'll kick your ass"(even if it means you have to beat them with a lightweight object lol) look people tend to refrain from making comments. At least it worked for me - I find that people won't say anything if they think you will make them look like an a$$hole if they do.

Now I find my biggest struggle is getting people to understand that just because I had a transplant does NOT mean I am cured of CF. I still have the NON lung issues - like digestion and diabetes and such. Everyone at my center (because few of them actually have CF) keeps saying oh now you don't have CF anymore or this one which annoys me .... what was it like when you HAD CF? Um ... you mean before I was transplanted cause I still HAVE CF lol.

Take Care and thanks for some laughs.
Linds
 
C

coltsfan715

New member
Man oh Man. I love this one cause I have always gotten this one. The most amusing ones for me were the comments that I got last year when I was spiralling downward and going through the transplant eval. I had a home health nurse come to my house and she just kept going on and on about how wonderful I looked and how I didn't look sick and she never would have thought and how healthy I must be and blah blah. I couldn't help but chuckle to myself and think - IF YOU ONLY KNEW!

Otherwise I used to get the blank stare from nurses - followed with "what are you here for?", "You don't need to be here", "You are too healthy to be here". I just would look at them and say yeah well I have CF and have a lung infection so I do kind of need to be here. Again nothing beats the insurance paid vacation.

As for the when did you get CF or catch CF thing - I just respond with this ... I have HAD CF since BIRTH but I was diagnosed on emy first birthday. That way I make sure to point out that I didn't just catch it or develop it.

I think what bothered me most is when I would have RTs argue with me on how to do nebs or CPT or they would say I didn't need CPT. That irked the $#!t out of me. I would just say ... seriously that is the main reason I am here cause I can do the rest of this on my own instead of paying you for it.

The handicapped placard thing - When I first got mine I almost wanted to walk with a limp when I got out of my car lol. I was so incredibly tempted to just drag my leg or something lol. I never did but oh so tempting. After a short while I just got tired of caring - that and I found that if you get out of the car with this "I DARE you to say something" or the "Say something (anything) and I'll kick your ass"(even if it means you have to beat them with a lightweight object lol) look people tend to refrain from making comments. At least it worked for me - I find that people won't say anything if they think you will make them look like an a$$hole if they do.

Now I find my biggest struggle is getting people to understand that just because I had a transplant does NOT mean I am cured of CF. I still have the NON lung issues - like digestion and diabetes and such. Everyone at my center (because few of them actually have CF) keeps saying oh now you don't have CF anymore or this one which annoys me .... what was it like when you HAD CF? Um ... you mean before I was transplanted cause I still HAVE CF lol.

Take Care and thanks for some laughs.
Linds
 
C

coltsfan715

New member
Man oh Man. I love this one cause I have always gotten this one. The most amusing ones for me were the comments that I got last year when I was spiralling downward and going through the transplant eval. I had a home health nurse come to my house and she just kept going on and on about how wonderful I looked and how I didn't look sick and she never would have thought and how healthy I must be and blah blah. I couldn't help but chuckle to myself and think - IF YOU ONLY KNEW!

Otherwise I used to get the blank stare from nurses - followed with "what are you here for?", "You don't need to be here", "You are too healthy to be here". I just would look at them and say yeah well I have CF and have a lung infection so I do kind of need to be here. Again nothing beats the insurance paid vacation.

As for the when did you get CF or catch CF thing - I just respond with this ... I have HAD CF since BIRTH but I was diagnosed on emy first birthday. That way I make sure to point out that I didn't just catch it or develop it.

I think what bothered me most is when I would have RTs argue with me on how to do nebs or CPT or they would say I didn't need CPT. That irked the $#!t out of me. I would just say ... seriously that is the main reason I am here cause I can do the rest of this on my own instead of paying you for it.

The handicapped placard thing - When I first got mine I almost wanted to walk with a limp when I got out of my car lol. I was so incredibly tempted to just drag my leg or something lol. I never did but oh so tempting. After a short while I just got tired of caring - that and I found that if you get out of the car with this "I DARE you to say something" or the "Say something (anything) and I'll kick your ass"(even if it means you have to beat them with a lightweight object lol) look people tend to refrain from making comments. At least it worked for me - I find that people won't say anything if they think you will make them look like an a$$hole if they do.

Now I find my biggest struggle is getting people to understand that just because I had a transplant does NOT mean I am cured of CF. I still have the NON lung issues - like digestion and diabetes and such. Everyone at my center (because few of them actually have CF) keeps saying oh now you don't have CF anymore or this one which annoys me .... what was it like when you HAD CF? Um ... you mean before I was transplanted cause I still HAVE CF lol.

Take Care and thanks for some laughs.
Linds
 
S

sarabeth87

New member
Me and my brother have to go to a CF clinic that is almost 3 hours away, so when my brother got dehydrated the other night, we had to take him to our local ER and a nurse asked him how long he's had CF (i've also been asked this) then when the doc came in he asked my mother how come we didn't just see our local pulmonologist and she was pretty mad by this point, so she told him because they didn't know crap about CF and he said "well all you have to do is read the chapter on CF in medical school."
 
S

sarabeth87

New member
Me and my brother have to go to a CF clinic that is almost 3 hours away, so when my brother got dehydrated the other night, we had to take him to our local ER and a nurse asked him how long he's had CF (i've also been asked this) then when the doc came in he asked my mother how come we didn't just see our local pulmonologist and she was pretty mad by this point, so she told him because they didn't know crap about CF and he said "well all you have to do is read the chapter on CF in medical school."
 
S

sarabeth87

New member
Me and my brother have to go to a CF clinic that is almost 3 hours away, so when my brother got dehydrated the other night, we had to take him to our local ER and a nurse asked him how long he's had CF (i've also been asked this) then when the doc came in he asked my mother how come we didn't just see our local pulmonologist and she was pretty mad by this point, so she told him because they didn't know crap about CF and he said "well all you have to do is read the chapter on CF in medical school."
 
S

sarabeth87

New member
Me and my brother have to go to a CF clinic that is almost 3 hours away, so when my brother got dehydrated the other night, we had to take him to our local ER and a nurse asked him how long he's had CF (i've also been asked this) then when the doc came in he asked my mother how come we didn't just see our local pulmonologist and she was pretty mad by this point, so she told him because they didn't know crap about CF and he said "well all you have to do is read the chapter on CF in medical school."
 
S

sarabeth87

New member
Me and my brother have to go to a CF clinic that is almost 3 hours away, so when my brother got dehydrated the other night, we had to take him to our local ER and a nurse asked him how long he's had CF (i've also been asked this) then when the doc came in he asked my mother how come we didn't just see our local pulmonologist and she was pretty mad by this point, so she told him because they didn't know crap about CF and he said "well all you have to do is read the chapter on CF in medical school."
 
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