Real Upset

[Aka2007]

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?

Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.
They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
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20/w CF F508 other not known. FEV1 45% & 65%

 

[Aka2007]

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?

Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.
They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
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20/w CF F508 other not known. FEV1 45% & 65%

 

[Aka2007]

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?

Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.
They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
---------------------------------------------------------------------------------------
20/w CF F508 other not known. FEV1 45% & 65%

 

[Aka2007]

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?

Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.
They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
---------------------------------------------------------------------------------------
20/w CF F508 other not known. FEV1 45% & 65%

 

[Aka2007]

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?

Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.
They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
---------------------------------------------------------------------------------------
20/w CF F508 other not known. FEV1 45% & 65%

 

[Aspiemom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Aka2007</b></i>

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?



Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.

They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

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20/w CF F508 other not known. FEV1 45% & 65%</end quote></div>


I understand where you are coming from. People look at me - an overweight, middle-aged woman - and act like I'm some kind of hypochondriac when I say I have Adult CF. I always go on to explain that my whole life they never could figure out what was really wrong with me and when I was 43yrs I went to Johns Hopkins and they looked into my lungs, then sent blood to a genetics lab...finally they start to believe me!! Even if we weren't diagnosed at birth we are very fortunate to have been diagnosed at all.

I try to remember there are a lot of ignorant people out there. I was one before I was diagnosed. I try to educate people and not take it personally when others are skeptic and ignorant. And there will always be really healthy people out there who just don't have a clue what it's like to be sick all of the time.

 

[Aspiemom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Aka2007</b></i>

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?



Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.

They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

---------------------------------------------------------------------------------------

20/w CF F508 other not known. FEV1 45% & 65%</end quote></div>


I understand where you are coming from. People look at me - an overweight, middle-aged woman - and act like I'm some kind of hypochondriac when I say I have Adult CF. I always go on to explain that my whole life they never could figure out what was really wrong with me and when I was 43yrs I went to Johns Hopkins and they looked into my lungs, then sent blood to a genetics lab...finally they start to believe me!! Even if we weren't diagnosed at birth we are very fortunate to have been diagnosed at all.

I try to remember there are a lot of ignorant people out there. I was one before I was diagnosed. I try to educate people and not take it personally when others are skeptic and ignorant. And there will always be really healthy people out there who just don't have a clue what it's like to be sick all of the time.

 

[Aspiemom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Aka2007</b></i>

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?



Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.

They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

---------------------------------------------------------------------------------------

20/w CF F508 other not known. FEV1 45% & 65%</end quote></div>


I understand where you are coming from. People look at me - an overweight, middle-aged woman - and act like I'm some kind of hypochondriac when I say I have Adult CF. I always go on to explain that my whole life they never could figure out what was really wrong with me and when I was 43yrs I went to Johns Hopkins and they looked into my lungs, then sent blood to a genetics lab...finally they start to believe me!! Even if we weren't diagnosed at birth we are very fortunate to have been diagnosed at all.

I try to remember there are a lot of ignorant people out there. I was one before I was diagnosed. I try to educate people and not take it personally when others are skeptic and ignorant. And there will always be really healthy people out there who just don't have a clue what it's like to be sick all of the time.

 

[Aspiemom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Aka2007</b></i>

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?



Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.

They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

---------------------------------------------------------------------------------------

20/w CF F508 other not known. FEV1 45% & 65%</end quote>


I understand where you are coming from. People look at me - an overweight, middle-aged woman - and act like I'm some kind of hypochondriac when I say I have Adult CF. I always go on to explain that my whole life they never could figure out what was really wrong with me and when I was 43yrs I went to Johns Hopkins and they looked into my lungs, then sent blood to a genetics lab...finally they start to believe me!! Even if we weren't diagnosed at birth we are very fortunate to have been diagnosed at all.

I try to remember there are a lot of ignorant people out there. I was one before I was diagnosed. I try to educate people and not take it personally when others are skeptic and ignorant. And there will always be really healthy people out there who just don't have a clue what it's like to be sick all of the time.

 

[Aspiemom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Aka2007</b></i>

My mom went over to see her friend today. And she asked my mom so does your daughter really have CF? And then she asked how it is dx. so my mom told her that I have F508. and She's like giving my mom the wird look like are you sure?



Anyway it makes me sooo mad how most people do not understand Cystic fibrosis.

They act like the only people who have it are the ones where the docs see it right at birth. well I was not that lucky. I was very ill in my digestive system and then my lungs and finally the doc's found the CF. I am just so sick of people who don't want to understand it.. they don't live with it. they don't know.. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

---------------------------------------------------------------------------------------

20/w CF F508 other not known. FEV1 45% & 65%</end quote>


I understand where you are coming from. People look at me - an overweight, middle-aged woman - and act like I'm some kind of hypochondriac when I say I have Adult CF. I always go on to explain that my whole life they never could figure out what was really wrong with me and when I was 43yrs I went to Johns Hopkins and they looked into my lungs, then sent blood to a genetics lab...finally they start to believe me!! Even if we weren't diagnosed at birth we are very fortunate to have been diagnosed at all.

I try to remember there are a lot of ignorant people out there. I was one before I was diagnosed. I try to educate people and not take it personally when others are skeptic and ignorant. And there will always be really healthy people out there who just don't have a clue what it's like to be sick all of the time.

 

[hopesiris]

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[hopesiris]

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[hopesiris]

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[hopesiris]

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[hopesiris]

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[lightNlife]

Last week was Invisible Chronic Illness Awareness Week. Check out my blog <a target=_blank class=ftalternatingbarlinklarge href="http://undestandingcysticfibrosis.blogspot.com.">http://undestandingcysticfibrosis.blogspot.com.</a> I've got some articles on my blog that address this topic.

Although our worlds revolve around CF, morning, noon, and night, we shouldn't fault people for not understanding it. I hadn't heard of Guillian Barre Syndrome (GBS) until I met someone with it. CF is a rare disorder. Only 1 in 3500 in the United States are diagnosed with it. Instead of being upset with people for not "getting it" we should do what we can to help them understand.

Some people genuinely want to know more about it, but have misinformation about it, or have confused it with some other condition. I have learned to give different people different details about CF depending on how well I know them, how much I think they can handle, or how genuine they seem about wanting to know more.

I think if you'll visit by blog, you'll find some great resources for educating others about CF.

 

[lightNlife]

Last week was Invisible Chronic Illness Awareness Week. Check out my blog <a target=_blank class=ftalternatingbarlinklarge href="http://undestandingcysticfibrosis.blogspot.com.">http://undestandingcysticfibrosis.blogspot.com.</a> I've got some articles on my blog that address this topic.

Although our worlds revolve around CF, morning, noon, and night, we shouldn't fault people for not understanding it. I hadn't heard of Guillian Barre Syndrome (GBS) until I met someone with it. CF is a rare disorder. Only 1 in 3500 in the United States are diagnosed with it. Instead of being upset with people for not "getting it" we should do what we can to help them understand.

Some people genuinely want to know more about it, but have misinformation about it, or have confused it with some other condition. I have learned to give different people different details about CF depending on how well I know them, how much I think they can handle, or how genuine they seem about wanting to know more.

I think if you'll visit by blog, you'll find some great resources for educating others about CF.

 

[lightNlife]

Last week was Invisible Chronic Illness Awareness Week. Check out my blog <a target=_blank class=ftalternatingbarlinklarge href="http://undestandingcysticfibrosis.blogspot.com.">http://undestandingcysticfibrosis.blogspot.com.</a> I've got some articles on my blog that address this topic.

Although our worlds revolve around CF, morning, noon, and night, we shouldn't fault people for not understanding it. I hadn't heard of Guillian Barre Syndrome (GBS) until I met someone with it. CF is a rare disorder. Only 1 in 3500 in the United States are diagnosed with it. Instead of being upset with people for not "getting it" we should do what we can to help them understand.

Some people genuinely want to know more about it, but have misinformation about it, or have confused it with some other condition. I have learned to give different people different details about CF depending on how well I know them, how much I think they can handle, or how genuine they seem about wanting to know more.

I think if you'll visit by blog, you'll find some great resources for educating others about CF.

 

[lightNlife]

Last week was Invisible Chronic Illness Awareness Week. Check out my blog <a target=_blank class=ftalternatingbarlinklarge href="http://undestandingcysticfibrosis.blogspot.com.">http://undestandingcysticfibrosis.blogspot.com.</a> I've got some articles on my blog that address this topic.

Although our worlds revolve around CF, morning, noon, and night, we shouldn't fault people for not understanding it. I hadn't heard of Guillian Barre Syndrome (GBS) until I met someone with it. CF is a rare disorder. Only 1 in 3500 in the United States are diagnosed with it. Instead of being upset with people for not "getting it" we should do what we can to help them understand.

Some people genuinely want to know more about it, but have misinformation about it, or have confused it with some other condition. I have learned to give different people different details about CF depending on how well I know them, how much I think they can handle, or how genuine they seem about wanting to know more.

I think if you'll visit by blog, you'll find some great resources for educating others about CF.

 

[lightNlife]

Last week was Invisible Chronic Illness Awareness Week. Check out my blog <a target=_blank class=ftalternatingbarlinklarge href="http://undestandingcysticfibrosis.blogspot.com.">http://undestandingcysticfibrosis.blogspot.com.</a> I've got some articles on my blog that address this topic.

Although our worlds revolve around CF, morning, noon, and night, we shouldn't fault people for not understanding it. I hadn't heard of Guillian Barre Syndrome (GBS) until I met someone with it. CF is a rare disorder. Only 1 in 3500 in the United States are diagnosed with it. Instead of being upset with people for not "getting it" we should do what we can to help them understand.

Some people genuinely want to know more about it, but have misinformation about it, or have confused it with some other condition. I have learned to give different people different details about CF depending on how well I know them, how much I think they can handle, or how genuine they seem about wanting to know more.

I think if you'll visit by blog, you'll find some great resources for educating others about CF.