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Mild and Rare Cases...where are you?
- Thread starter lmattaway
- Start date
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
mom2lillian
New member
*** Back to the Real Topic Now<img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/face-icon-small-shocked.gif" border="0">***Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">
Lindsay- When I came here I 100% felt as you do now. This site has opened my eyes to a great # of things and I have my improved health to thank them all wiht.
I recently posted a blog called mild atypcial or lucky that you may want to read, I got some good responses. This is just a thought but some of the individuals who are in teh same boat as you are not going to want and come out and say it so once you find some of these individuals you might want to PM them and see if they are game for a private topic.
I am 27 years old, just had a child in december, recently imrpoved my PFT's from ~95 to 105 in course 6 months. I am pancreatic sufficent and have only ever had to try to loose wait not gain. The only other real complication I have had is to have my gallbladder out and the doctors believe in hindsight it was becuase they had me taking enzymes that caused this. Just as of this year I do vest 2x a day, work out daily, xopenex in morning (never thought I needed it before but it helps before a run), pulmozyme 2vials a day, TOBI cycling due to PA colonization. Oh and I forgot I do have ABPA currently in remission <img src="i/expressions/face-icon-small-smile.gif" border="0"> yeah.
I do/did have a hard time posting about my healht and ?'s because i felt I had no right, I was 'too' healthy. A # of things have helped me with this including the blog I posted. I also realize that we are all at different points in our journey and reading about others has helped me prepare just as reading about me has given some parents 'hope'. It is all a continuum (unfortunately). You may learn that after stikcing around for a while you feel different about your care and treatment or you may feel that you will 'cross that bridge' when you get there, either way is yoru choice. I do expect there are others that also feel that we dont 'fit in' in the sense they feel we are 'different and I cant blame them but I have never had anyone treat me that way.
When I used to go to clinci I felt very guilty because I saw alot of poeple alot sicker than myself and when I went in there I felt 'sooo awful' but then I would see them and feel stupid. so I told her this one day when she asked what was wrong. As a breast cancer survivor she explained to me that if the worst thing you ever had was a paper cut than that seems bad to you if the worst dip in PFT's you have ever had is 5% then you seem short of breath there etc. She explained how her friend had her tonsils out and called to get sypmathy from her when she had both breast removed and chemo at the same time. Now while that is a bit extreme she understood because for that woman who had never been sick a day in her life she was truly doing badly, just like Deb was having just had major surgery. That doesnt mean if you are the one with 25% saying you feel fine that you wont think that the person at 95% shoudl 'suck it up' a bit, it is only natural but I digress.
Basically, we all have something to offer and alot to learn in my opinion and whether you feel you need that information now or later -- eventually, we will all need it-unfortunately.
Stick around <img src="i/expressions/face-icon-small-wink.gif" border="0">