not willing to take this till the end

[AnD]

Hi Leeza <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I know what you are talking about, since the same thing happened to me (but a couple years earlier- 16). I was at 100% PFTs, and caught pneumonia in the hospital while having my gallbladder out (grrrr). I remember being so depressed about my life, my future (telling myself I would never get married, have kids, what was the point...) Since then, it seems I am fighting tooth and nail to keep what I have (47% Fev1).

<i>However</i>, now I am 36 years old, married for 15 years to a wonderful man, and have a 3 year old daughter who both brightens my days and wears me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> . Sometimes I think it is almost harder (mentally) when we've been living a "normal" life, and then get smacked with the realities of cf later in life. You will adjust though, if you give it a go. It's just going to be a new kind of "normal". Being thankful for the years I had apart from the demands of cf on my time, mind and body helps me. Not everyone gets those years of health.

I also am always on the lookout for things to give me "more hours in my day", and slowly but surely, am finding them. My advice to you would be to take some time and read around here and you will get some good advice and info to help you out.

And if you do want to pursue some counsuling about this, perhaps your social worker at clinic could help you find someone who has helped others through the same thing you are going through.

I will be praying for you <img src="i/expressions/heart.gif" border="0"> .

 

[AnD]

Hi Leeza <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I know what you are talking about, since the same thing happened to me (but a couple years earlier- 16). I was at 100% PFTs, and caught pneumonia in the hospital while having my gallbladder out (grrrr). I remember being so depressed about my life, my future (telling myself I would never get married, have kids, what was the point...) Since then, it seems I am fighting tooth and nail to keep what I have (47% Fev1).

<i>However</i>, now I am 36 years old, married for 15 years to a wonderful man, and have a 3 year old daughter who both brightens my days and wears me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> . Sometimes I think it is almost harder (mentally) when we've been living a "normal" life, and then get smacked with the realities of cf later in life. You will adjust though, if you give it a go. It's just going to be a new kind of "normal". Being thankful for the years I had apart from the demands of cf on my time, mind and body helps me. Not everyone gets those years of health.

I also am always on the lookout for things to give me "more hours in my day", and slowly but surely, am finding them. My advice to you would be to take some time and read around here and you will get some good advice and info to help you out.

And if you do want to pursue some counsuling about this, perhaps your social worker at clinic could help you find someone who has helped others through the same thing you are going through.

I will be praying for you <img src="i/expressions/heart.gif" border="0"> .

 

[AnD]

Hi Leeza <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I know what you are talking about, since the same thing happened to me (but a couple years earlier- 16). I was at 100% PFTs, and caught pneumonia in the hospital while having my gallbladder out (grrrr). I remember being so depressed about my life, my future (telling myself I would never get married, have kids, what was the point...) Since then, it seems I am fighting tooth and nail to keep what I have (47% Fev1).

<i>However</i>, now I am 36 years old, married for 15 years to a wonderful man, and have a 3 year old daughter who both brightens my days and wears me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> . Sometimes I think it is almost harder (mentally) when we've been living a "normal" life, and then get smacked with the realities of cf later in life. You will adjust though, if you give it a go. It's just going to be a new kind of "normal". Being thankful for the years I had apart from the demands of cf on my time, mind and body helps me. Not everyone gets those years of health.

I also am always on the lookout for things to give me "more hours in my day", and slowly but surely, am finding them. My advice to you would be to take some time and read around here and you will get some good advice and info to help you out.

And if you do want to pursue some counsuling about this, perhaps your social worker at clinic could help you find someone who has helped others through the same thing you are going through.

I will be praying for you <img src="i/expressions/heart.gif" border="0"> .

 

[AnD]

Hi Leeza <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I know what you are talking about, since the same thing happened to me (but a couple years earlier- 16). I was at 100% PFTs, and caught pneumonia in the hospital while having my gallbladder out (grrrr). I remember being so depressed about my life, my future (telling myself I would never get married, have kids, what was the point...) Since then, it seems I am fighting tooth and nail to keep what I have (47% Fev1).

<i>However</i>, now I am 36 years old, married for 15 years to a wonderful man, and have a 3 year old daughter who both brightens my days and wears me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> . Sometimes I think it is almost harder (mentally) when we've been living a "normal" life, and then get smacked with the realities of cf later in life. You will adjust though, if you give it a go. It's just going to be a new kind of "normal". Being thankful for the years I had apart from the demands of cf on my time, mind and body helps me. Not everyone gets those years of health.

I also am always on the lookout for things to give me "more hours in my day", and slowly but surely, am finding them. My advice to you would be to take some time and read around here and you will get some good advice and info to help you out.

And if you do want to pursue some counsuling about this, perhaps your social worker at clinic could help you find someone who has helped others through the same thing you are going through.

I will be praying for you <img src="i/expressions/heart.gif" border="0"> .

 

[AnD]

Hi Leeza <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I know what you are talking about, since the same thing happened to me (but a couple years earlier- 16). I was at 100% PFTs, and caught pneumonia in the hospital while having my gallbladder out (grrrr). I remember being so depressed about my life, my future (telling myself I would never get married, have kids, what was the point...) Since then, it seems I am fighting tooth and nail to keep what I have (47% Fev1).

<i>However</i>, now I am 36 years old, married for 15 years to a wonderful man, and have a 3 year old daughter who both brightens my days and wears me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> . Sometimes I think it is almost harder (mentally) when we've been living a "normal" life, and then get smacked with the realities of cf later in life. You will adjust though, if you give it a go. It's just going to be a new kind of "normal". Being thankful for the years I had apart from the demands of cf on my time, mind and body helps me. Not everyone gets those years of health.

I also am always on the lookout for things to give me "more hours in my day", and slowly but surely, am finding them. My advice to you would be to take some time and read around here and you will get some good advice and info to help you out.

And if you do want to pursue some counsuling about this, perhaps your social worker at clinic could help you find someone who has helped others through the same thing you are going through.

I will be praying for you <img src="i/expressions/heart.gif" border="0"> .

 

[beaudz34]

Hi Leeza.

Wow, I'm afraid I don't have too many words of wisdom for you. I don't have CF but my 5 year old daughter does, and I have to say that reading your post propelled me about 15 years. I've been wondering (especially recently), about how to go about things with my daughter to avoid having her get to the exact point where you are. I suppose there's no real way to do that, but I can hope for miracles.

Please just try to keep the hope alive. Don't get down on yourself. Reading the posts in this forum has opened my eyes to the reality of what CF patients go through in their lives, and most seem to have come out strong and are living happy and complete lives despite (or maybe because of) the hurdles they've overcome. Their stories are simply amazing and have given me more hope than I've ever had. Don't hesitate to discuss your issues with someone if you need to do so.

 

[beaudz34]

Hi Leeza.

Wow, I'm afraid I don't have too many words of wisdom for you. I don't have CF but my 5 year old daughter does, and I have to say that reading your post propelled me about 15 years. I've been wondering (especially recently), about how to go about things with my daughter to avoid having her get to the exact point where you are. I suppose there's no real way to do that, but I can hope for miracles.

Please just try to keep the hope alive. Don't get down on yourself. Reading the posts in this forum has opened my eyes to the reality of what CF patients go through in their lives, and most seem to have come out strong and are living happy and complete lives despite (or maybe because of) the hurdles they've overcome. Their stories are simply amazing and have given me more hope than I've ever had. Don't hesitate to discuss your issues with someone if you need to do so.

 

[beaudz34]

Hi Leeza.

Wow, I'm afraid I don't have too many words of wisdom for you. I don't have CF but my 5 year old daughter does, and I have to say that reading your post propelled me about 15 years. I've been wondering (especially recently), about how to go about things with my daughter to avoid having her get to the exact point where you are. I suppose there's no real way to do that, but I can hope for miracles.

Please just try to keep the hope alive. Don't get down on yourself. Reading the posts in this forum has opened my eyes to the reality of what CF patients go through in their lives, and most seem to have come out strong and are living happy and complete lives despite (or maybe because of) the hurdles they've overcome. Their stories are simply amazing and have given me more hope than I've ever had. Don't hesitate to discuss your issues with someone if you need to do so.

 

[beaudz34]

Hi Leeza.

Wow, I'm afraid I don't have too many words of wisdom for you. I don't have CF but my 5 year old daughter does, and I have to say that reading your post propelled me about 15 years. I've been wondering (especially recently), about how to go about things with my daughter to avoid having her get to the exact point where you are. I suppose there's no real way to do that, but I can hope for miracles.

Please just try to keep the hope alive. Don't get down on yourself. Reading the posts in this forum has opened my eyes to the reality of what CF patients go through in their lives, and most seem to have come out strong and are living happy and complete lives despite (or maybe because of) the hurdles they've overcome. Their stories are simply amazing and have given me more hope than I've ever had. Don't hesitate to discuss your issues with someone if you need to do so.

 

[beaudz34]

Hi Leeza.

Wow, I'm afraid I don't have too many words of wisdom for you. I don't have CF but my 5 year old daughter does, and I have to say that reading your post propelled me about 15 years. I've been wondering (especially recently), about how to go about things with my daughter to avoid having her get to the exact point where you are. I suppose there's no real way to do that, but I can hope for miracles.

Please just try to keep the hope alive. Don't get down on yourself. Reading the posts in this forum has opened my eyes to the reality of what CF patients go through in their lives, and most seem to have come out strong and are living happy and complete lives despite (or maybe because of) the hurdles they've overcome. Their stories are simply amazing and have given me more hope than I've ever had. Don't hesitate to discuss your issues with someone if you need to do so.

 

[Athena]

Welcome Leeza,

You have found a good place. I found this site in June but didn't start posting till a month ago. I lived most of my life thinking what was the point I have no future I have CF. I better have my fun while I could. I too thought many times of driving in to a tree. I think that a lot of cfer's didn't think they would have a normal life they put a limit on it. Only to realize that now days thats not the case. I'm 28 I have a beautiful daughter which I never thought was possible. A lot of cfer's are married, went to colloge, and have kids. I don't have any words of wisdom for u but I can tell u that this site has helped me on many different levels. I never thought that someone would actually be able to truly know how I felt or understand. I'm glad u found us and hope that u find whatever it is u r seeking.
U r in my thoughts.

Athena

 

[Athena]

Welcome Leeza,

You have found a good place. I found this site in June but didn't start posting till a month ago. I lived most of my life thinking what was the point I have no future I have CF. I better have my fun while I could. I too thought many times of driving in to a tree. I think that a lot of cfer's didn't think they would have a normal life they put a limit on it. Only to realize that now days thats not the case. I'm 28 I have a beautiful daughter which I never thought was possible. A lot of cfer's are married, went to colloge, and have kids. I don't have any words of wisdom for u but I can tell u that this site has helped me on many different levels. I never thought that someone would actually be able to truly know how I felt or understand. I'm glad u found us and hope that u find whatever it is u r seeking.
U r in my thoughts.

Athena

 

[Athena]

Welcome Leeza,

You have found a good place. I found this site in June but didn't start posting till a month ago. I lived most of my life thinking what was the point I have no future I have CF. I better have my fun while I could. I too thought many times of driving in to a tree. I think that a lot of cfer's didn't think they would have a normal life they put a limit on it. Only to realize that now days thats not the case. I'm 28 I have a beautiful daughter which I never thought was possible. A lot of cfer's are married, went to colloge, and have kids. I don't have any words of wisdom for u but I can tell u that this site has helped me on many different levels. I never thought that someone would actually be able to truly know how I felt or understand. I'm glad u found us and hope that u find whatever it is u r seeking.
U r in my thoughts.

Athena

 

[Athena]

Welcome Leeza,

You have found a good place. I found this site in June but didn't start posting till a month ago. I lived most of my life thinking what was the point I have no future I have CF. I better have my fun while I could. I too thought many times of driving in to a tree. I think that a lot of cfer's didn't think they would have a normal life they put a limit on it. Only to realize that now days thats not the case. I'm 28 I have a beautiful daughter which I never thought was possible. A lot of cfer's are married, went to colloge, and have kids. I don't have any words of wisdom for u but I can tell u that this site has helped me on many different levels. I never thought that someone would actually be able to truly know how I felt or understand. I'm glad u found us and hope that u find whatever it is u r seeking.
U r in my thoughts.

Athena

 

[Athena]

Welcome Leeza,

You have found a good place. I found this site in June but didn't start posting till a month ago. I lived most of my life thinking what was the point I have no future I have CF. I better have my fun while I could. I too thought many times of driving in to a tree. I think that a lot of cfer's didn't think they would have a normal life they put a limit on it. Only to realize that now days thats not the case. I'm 28 I have a beautiful daughter which I never thought was possible. A lot of cfer's are married, went to colloge, and have kids. I don't have any words of wisdom for u but I can tell u that this site has helped me on many different levels. I never thought that someone would actually be able to truly know how I felt or understand. I'm glad u found us and hope that u find whatever it is u r seeking.
U r in my thoughts.

Athena

 

[rockingdog]

After 45 years of cf and too many times of thinking of giving up, I'm glad I didn't. There is more hope than ever that this disease will be cured and better yet - more new drugs coming than ever before. What's to say that one of those drugs won't change your life.

I realize now that I was really bad at predicting the future. There were times that I thought "this is it, my life as I know it is over." But then something always saved me. First pulmozyme, then TOBI, and now Cayston. It's a thin line some days, but can you really know at this point that you won't have the things you talk about? There may be a delay in achieving some of your goals, but they may still be possible.

I thought about ending it a lot until one day when I read in USA Today that they found the gene and that could lead to a cure. I thought, "what an idiot I'd be if I ended things now and they found a cure tomorrow." I'm not a big fan of irony. Hang in there. One never knows what can happen in life.

 

[rockingdog]

After 45 years of cf and too many times of thinking of giving up, I'm glad I didn't. There is more hope than ever that this disease will be cured and better yet - more new drugs coming than ever before. What's to say that one of those drugs won't change your life.

I realize now that I was really bad at predicting the future. There were times that I thought "this is it, my life as I know it is over." But then something always saved me. First pulmozyme, then TOBI, and now Cayston. It's a thin line some days, but can you really know at this point that you won't have the things you talk about? There may be a delay in achieving some of your goals, but they may still be possible.

I thought about ending it a lot until one day when I read in USA Today that they found the gene and that could lead to a cure. I thought, "what an idiot I'd be if I ended things now and they found a cure tomorrow." I'm not a big fan of irony. Hang in there. One never knows what can happen in life.

 

[rockingdog]

After 45 years of cf and too many times of thinking of giving up, I'm glad I didn't. There is more hope than ever that this disease will be cured and better yet - more new drugs coming than ever before. What's to say that one of those drugs won't change your life.

I realize now that I was really bad at predicting the future. There were times that I thought "this is it, my life as I know it is over." But then something always saved me. First pulmozyme, then TOBI, and now Cayston. It's a thin line some days, but can you really know at this point that you won't have the things you talk about? There may be a delay in achieving some of your goals, but they may still be possible.

I thought about ending it a lot until one day when I read in USA Today that they found the gene and that could lead to a cure. I thought, "what an idiot I'd be if I ended things now and they found a cure tomorrow." I'm not a big fan of irony. Hang in there. One never knows what can happen in life.

 

[rockingdog]

After 45 years of cf and too many times of thinking of giving up, I'm glad I didn't. There is more hope than ever that this disease will be cured and better yet - more new drugs coming than ever before. What's to say that one of those drugs won't change your life.

I realize now that I was really bad at predicting the future. There were times that I thought "this is it, my life as I know it is over." But then something always saved me. First pulmozyme, then TOBI, and now Cayston. It's a thin line some days, but can you really know at this point that you won't have the things you talk about? There may be a delay in achieving some of your goals, but they may still be possible.

I thought about ending it a lot until one day when I read in USA Today that they found the gene and that could lead to a cure. I thought, "what an idiot I'd be if I ended things now and they found a cure tomorrow." I'm not a big fan of irony. Hang in there. One never knows what can happen in life.

 

[rockingdog]

After 45 years of cf and too many times of thinking of giving up, I'm glad I didn't. There is more hope than ever that this disease will be cured and better yet - more new drugs coming than ever before. What's to say that one of those drugs won't change your life.

I realize now that I was really bad at predicting the future. There were times that I thought "this is it, my life as I know it is over." But then something always saved me. First pulmozyme, then TOBI, and now Cayston. It's a thin line some days, but can you really know at this point that you won't have the things you talk about? There may be a delay in achieving some of your goals, but they may still be possible.

I thought about ending it a lot until one day when I read in USA Today that they found the gene and that could lead to a cure. I thought, "what an idiot I'd be if I ended things now and they found a cure tomorrow." I'm not a big fan of irony. Hang in there. One never knows what can happen in life.