bittyhorse23
New member
I'll be emailing you my answers tonight. I don't have the time right this second to do them, I have to get to work <img src="i/expressions/face-icon-small-happy.gif" border="0">
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adult CF project
- Thread starter bittyhorse23
- Start date
bittyhorse23
New member
I'll be emailing you my answers tonight. I don't have the time right this second to do them, I have to get to work <img src="i/expressions/face-icon-small-happy.gif" border="0">
bittyhorse23
New member
I'll be emailing you my answers tonight. I don't have the time right this second to do them, I have to get to work <img src="i/expressions/face-icon-small-happy.gif" border="0">
bittyhorse23
New member
I'll be emailing you my answers tonight. I don't have the time right this second to do them, I have to get to work <img src="i/expressions/face-icon-small-happy.gif" border="0">
bittyhorse23
New member
I'll be emailing you my answers tonight. I don't have the time right this second to do them, I have to get to work <img src="i/expressions/face-icon-small-happy.gif" border="0">
based on the questions posed, it seems that you don't have a very good grasp on the illness in question. cf is a lifelong, progressive illness. very few adults are actually diagnosed with cf. although it does happen, these cases are uncommon and these people actually had cf all along; cf was not acquired, it was overlooked.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
based on the questions posed, it seems that you don't have a very good grasp on the illness in question. cf is a lifelong, progressive illness. very few adults are actually diagnosed with cf. although it does happen, these cases are uncommon and these people actually had cf all along; cf was not acquired, it was overlooked.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
based on the questions posed, it seems that you don't have a very good grasp on the illness in question. cf is a lifelong, progressive illness. very few adults are actually diagnosed with cf. although it does happen, these cases are uncommon and these people actually had cf all along; cf was not acquired, it was overlooked.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
based on the questions posed, it seems that you don't have a very good grasp on the illness in question. cf is a lifelong, progressive illness. very few adults are actually diagnosed with cf. although it does happen, these cases are uncommon and these people actually had cf all along; cf was not acquired, it was overlooked.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
based on the questions posed, it seems that you don't have a very good grasp on the illness in question. cf is a lifelong, progressive illness. very few adults are actually diagnosed with cf. although it does happen, these cases are uncommon and these people actually had cf all along; cf was not acquired, it was overlooked.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
this disease does not change life, it shapes life. those afflicted are born into this state. while diagnosis may come late, the illness has been present all along and life without cf is unknown therefore no change can occur - personally, spiritually, or domestically.
recovery and/or rehabilitation are sticky terms. cf is progressive, there is no recovery. sure we recover from exacerbations, but generally not without some loss of lung function - recovery, in this sense, is bittersweet. those who have undergone transplantation do go through rehabilitative processes, but, for all intents and purposes, transplantation is a whole 'nother illness of its own, cf being the underlying cause.
lastly, infection control is not just a major concern - it is the reason there are adults with cf at all. infection is what causes the loss of lung function which eventually causes fatality. before adequate infection control techniques, both in prevention and treatment, people with cf most often died before adulthood.
so those are my responses, although i'm not quite sure mine were solicited since i'm not an adult who has been diagnosed with cf; i am an infant who was diagnosed who has happened to survive cf thus far into what can only be described as adulthood.
i think you really need to rethink how you approach this issue. like kswitch said, cf is rarely diagnosed as an adult and we don't know anything but cf so it can't change our outlook on life. If the only people you are looking for are people who were diagnosed as adults, i think you will be disapointed, i was a really late diagnosee and i was diagnosed at 14. talk with your group and do a lot of reserch before you go asking questions, i think you are burning a resource too soon, you need to know more about the disease before you ask questions of people with cf so you can ask the right ones.
Does anyone on the site have any questions that would be better fitted for this catagory?
Does anyone on the site have any questions that would be better fitted for this catagory?
i think you really need to rethink how you approach this issue. like kswitch said, cf is rarely diagnosed as an adult and we don't know anything but cf so it can't change our outlook on life. If the only people you are looking for are people who were diagnosed as adults, i think you will be disapointed, i was a really late diagnosee and i was diagnosed at 14. talk with your group and do a lot of reserch before you go asking questions, i think you are burning a resource too soon, you need to know more about the disease before you ask questions of people with cf so you can ask the right ones.
Does anyone on the site have any questions that would be better fitted for this catagory?
Does anyone on the site have any questions that would be better fitted for this catagory?
i think you really need to rethink how you approach this issue. like kswitch said, cf is rarely diagnosed as an adult and we don't know anything but cf so it can't change our outlook on life. If the only people you are looking for are people who were diagnosed as adults, i think you will be disapointed, i was a really late diagnosee and i was diagnosed at 14. talk with your group and do a lot of reserch before you go asking questions, i think you are burning a resource too soon, you need to know more about the disease before you ask questions of people with cf so you can ask the right ones.
Does anyone on the site have any questions that would be better fitted for this catagory?
Does anyone on the site have any questions that would be better fitted for this catagory?
i think you really need to rethink how you approach this issue. like kswitch said, cf is rarely diagnosed as an adult and we don't know anything but cf so it can't change our outlook on life. If the only people you are looking for are people who were diagnosed as adults, i think you will be disapointed, i was a really late diagnosee and i was diagnosed at 14. talk with your group and do a lot of reserch before you go asking questions, i think you are burning a resource too soon, you need to know more about the disease before you ask questions of people with cf so you can ask the right ones.
Does anyone on the site have any questions that would be better fitted for this catagory?
Does anyone on the site have any questions that would be better fitted for this catagory?
i think you really need to rethink how you approach this issue. like kswitch said, cf is rarely diagnosed as an adult and we don't know anything but cf so it can't change our outlook on life. If the only people you are looking for are people who were diagnosed as adults, i think you will be disapointed, i was a really late diagnosee and i was diagnosed at 14. talk with your group and do a lot of reserch before you go asking questions, i think you are burning a resource too soon, you need to know more about the disease before you ask questions of people with cf so you can ask the right ones.
Does anyone on the site have any questions that would be better fitted for this catagory?
Does anyone on the site have any questions that would be better fitted for this catagory?
I must second many of kswitch's sentiments... my guess is that these questions were assigned across a range of topics, your group landed with CF... its not your fault, but they don't fit CF very well. I hope you take the time to learn some more about what makes CF and chronic conditions unique, and convey that to your class.
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
I must second many of kswitch's sentiments... my guess is that these questions were assigned across a range of topics, your group landed with CF... its not your fault, but they don't fit CF very well. I hope you take the time to learn some more about what makes CF and chronic conditions unique, and convey that to your class.
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
I must second many of kswitch's sentiments... my guess is that these questions were assigned across a range of topics, your group landed with CF... its not your fault, but they don't fit CF very well. I hope you take the time to learn some more about what makes CF and chronic conditions unique, and convey that to your class.
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
I must second many of kswitch's sentiments... my guess is that these questions were assigned across a range of topics, your group landed with CF... its not your fault, but they don't fit CF very well. I hope you take the time to learn some more about what makes CF and chronic conditions unique, and convey that to your class.
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
I must second many of kswitch's sentiments... my guess is that these questions were assigned across a range of topics, your group landed with CF... its not your fault, but they don't fit CF very well. I hope you take the time to learn some more about what makes CF and chronic conditions unique, and convey that to your class.
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF
The terms "recovery and rehabilitation" really bother me. There is no recovery, or rehabilitation. There is a constant, daily grind to hold on to what lung function we have, and if we're lucky, recover small pieces of it after we get sick. It doesn't end. Even if we manage to regain some lung function, or have high function, we are not cured, we still have to fight to hold it. It is like running a marathon with no finish line. There is no light at the end of the tunnel. I don't waste my time hoping and praying for a "cure". There is too much chance of disappointment there. I focus on maintaining the lung function I have. If by chance a "cure" comes along, great - I'll be left standing with as much lung function as I could have. If not, I will have lived the best with what I had.
I strongly identify with the K's idea that CF does not change life, it shapes life. I for one, was diagnosed at age 4, 23 years ago. At a minimum I have a three hour treatment routine I have to adhere to everyday. I've been adhereing to some version of my current routine for 15 years, and don't count how many more I have to go. I worry about dealing with my treatments today, and maybe tomorrow. To look further or to contemplate the sheer size of it all is really too overwhelming, and I don't like to do that.
I have been living with CF and have been learning about CF since my current CF specialist was in middle school. I remember the days when there were no CF specific treatments, and my parents were told to come to clinic "when he gets sick".
However, I don't really agree with the idea that no change can occur personally, spiritually, or domestically. I think that how each person with CF deals with their disease is a huge part of the equation. There are people who give up and say I'm going to die anyway, I might as well not do my treatments, smoke pot and "have fun", and there are others who say, I might die anyway, but I'm going to make sure I maximize what health I have and live the fullest life possible, and maybe surprise some people while I'm at it.
As I have grown, my acceptance and perceptions of living with CF have changed greatly. I used to be very mad at the world/God for being born with a disease. As I've gotten older, I've realized that everyone has sh*t in their lives, and CF is mine. I have seen the good and bad impacts CF has had on my life... it really is a drag, but at the same time CF made me examine my life in a way I think very few 16 year olds do. Besides confronting mortality, CF has also brought into sharp contrast the questions of what do I want to do while I'm alive. I don't waste my time. I set goals, and strive to over-achieve in many areas of my life. I'm also very hard to satisfy, and I have a gigantic ego.
I said above that there is no light at the end of the tunnel... there isn't, but that doesn't mean the tunnel is dark. With the support of my wife, family, and a few close friends, I light the tunnel myself.
Chris
27 m w/CF