You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Help and support
- Thread starter my65roses4me
- Start date
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote></div>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
Not really agreeing with the idea of telling the "mild" mutation people that there is a chance they will be fine and symptomless so they should just watch and and take no medicine until they experience difficulties. I feel that sometimes it is very hard to realize something is wrong because you get so used to it.
Also, wouldn't it just be like telling a person who smoked a pack a day that there is a chance they won't get lung cancer so just continue until they feel sick?
I just feel I would rather be proactive in all regards than just in some. But that is just my opinion</end quote>
Of course you are entitled to be as proactive as you want and to treat your disease however you want. That is exactly my point. I don't tell anyone what they should do. I just believe that in cases where a person may go their entire life and never develop any symptoms this information is a valuable part of the decsion making process. One person might have the same mutations and choose differently from you but wouldn't you feel angry if people withheld information from you and didn't allow you to make that choice?? What if the doctor only told you that you would most likely never develop symptoms and didn't stress the fact that there was a possibility you could develop symptoms and prevention is the key to prolonging life...? What if you were told to take medications that caused you need kidney transplants in order to prevent lung symptoms from appearing without being told that there was a good chance you would never develop lung issues anyway?? How could you assess the risks with out this info?
What i am talking about is reality. As an example, most people with the f508c mutation never develop symptoms. That is a huge part of reality. It isn't sugercoating something or putting a positve spin on it. It is important info that people deserve to know so they can make informed choices about their health. It is an important part of risk assessment. Many medications and treatments involve risks and you can't preform a cost-benfit analysis without ALL the information (bad and good).
I really have to get back to work but i would love it if someone actually read my posts and gave me some feedback.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
I did actually read your posts. I was under the impression with the first post that you were saying that they should be only given the idea that their CF is mild based on mutuations. I completely agree that they should be informed of both sides. They should understand the mildness of their CF but also informed of what could go wrong.
Khristina,
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Khristina,
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Khristina,
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Khristina,
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana