cf is merciful

6

65rosessamurai

Guest
Since the exchange rate is so high, my two yen won't be worth anything!

But, I can see there are many viewpoints to which is worse than which, either of which are the worst of two (or more) evils!

As for how a person's meaning is expressed in writing, it's only as good as how the writer expresses it.

And, this post looks so nostalgic of WinAce's kind of topics.
 
J

JustDucky

New member
True...you could get hit by a bus or have a tragic accident. My children's psychologist says that about life. It is so unpredictable in so many ways...everyone's road is unique. How we battle disease, whether it be CF or cancer is different in everyone. If I had the choice, I wouldn't want any of the disabilities listed, but since I do indeed have CF along with muscular dystrophy, I must deal with each of their issues. With CF, the lung infections, DM, coughing, the daily meds and CPT keep me busy along with my frequent visits to club med. In the back of my head I sometimes wonder if my brave fight with any of my infections might be my last. My dystrophy affects how I walk, even how I breathe...I rely on a vent to breathe, have done so for the last 2 years. I just learn how to live with them, along with other health problems that I have. Yeah, life can be unfair...So many people suffer devastating illnesses, many of them make my issues pale in comparison to what they deal with on a daily basis. I know, I took care of so many profoundly disabled individuals who relied on vents, G-tube feedings, who were quads etc...the list goes on. Some ultimately came to terms with their disablilities and learn how to live again. Some don't. It's up to the person. Having a great support system and team is a great help in these cases.

I will tell you that when I was first vented and then sent to a skilled nursing facility, I had to learn how to dress myself, eat again (eating with a trach without aspirating does take practice- I was fed via a NG tube for some time), learn to shower again, even dress and walk. Even something as simple as going to the bathroom took some adjustments. How we take things for granted sometimes. I was one of those people. It was one of the hardest things I had to deal with. Everything that was my life prior to being trached and vented was no longer the same. I feel that it is like that with many disabilities. If you lose your sight, you learn Braille and how to walk on a sidewalk, of course with modifications....you learn how to live differently. Same with losing your hearing. You just make modifications in your life so that you can function.

As far as cancer is concerned, that disease has such a twisted road, it is so unpredictable. You could go through the chemo, radiation and be pronounced in remission, but it can come back. Not always but it can. I am always happy for the person who is deemed cured. I know it must lurk in the back of their minds whether they will get their cancer back and then have to repeat the who cycle of surgery, chemo, radiation...whatever the oncologist has in store for them. Not to mention whether it will metastisize to other organs, makes for a poorer prognosis. Some people battle this disease for years, some only have weeks or months to live after diagnosis. Let me tell you, watching someone die in their last stages of cancer tears your heart out. I know, I worked with oncology patients. If I were to get cancer (oh please no), I would fight it like I have my other disabilites and pray that I am one of the lucky ones who gets cured.

My heart goes out to anyone who has to battle any disease. As I have said, they are all unique in the problems that they must face. Some people are taken from this earth much too soon, too soon for them to even experience life. Some people live with their diseases for decades and just manage each new problem that comes up. I personally wouldn't trade one disability for another, I am already living with what I have and have accepted that. In a perfect world, no one would get sick, but it is a reality. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
True...you could get hit by a bus or have a tragic accident. My children's psychologist says that about life. It is so unpredictable in so many ways...everyone's road is unique. How we battle disease, whether it be CF or cancer is different in everyone. If I had the choice, I wouldn't want any of the disabilities listed, but since I do indeed have CF along with muscular dystrophy, I must deal with each of their issues. With CF, the lung infections, DM, coughing, the daily meds and CPT keep me busy along with my frequent visits to club med. In the back of my head I sometimes wonder if my brave fight with any of my infections might be my last. My dystrophy affects how I walk, even how I breathe...I rely on a vent to breathe, have done so for the last 2 years. I just learn how to live with them, along with other health problems that I have. Yeah, life can be unfair...So many people suffer devastating illnesses, many of them make my issues pale in comparison to what they deal with on a daily basis. I know, I took care of so many profoundly disabled individuals who relied on vents, G-tube feedings, who were quads etc...the list goes on. Some ultimately came to terms with their disablilities and learn how to live again. Some don't. It's up to the person. Having a great support system and team is a great help in these cases.

I will tell you that when I was first vented and then sent to a skilled nursing facility, I had to learn how to dress myself, eat again (eating with a trach without aspirating does take practice- I was fed via a NG tube for some time), learn to shower again, even dress and walk. Even something as simple as going to the bathroom took some adjustments. How we take things for granted sometimes. I was one of those people. It was one of the hardest things I had to deal with. Everything that was my life prior to being trached and vented was no longer the same. I feel that it is like that with many disabilities. If you lose your sight, you learn Braille and how to walk on a sidewalk, of course with modifications....you learn how to live differently. Same with losing your hearing. You just make modifications in your life so that you can function.

As far as cancer is concerned, that disease has such a twisted road, it is so unpredictable. You could go through the chemo, radiation and be pronounced in remission, but it can come back. Not always but it can. I am always happy for the person who is deemed cured. I know it must lurk in the back of their minds whether they will get their cancer back and then have to repeat the who cycle of surgery, chemo, radiation...whatever the oncologist has in store for them. Not to mention whether it will metastisize to other organs, makes for a poorer prognosis. Some people battle this disease for years, some only have weeks or months to live after diagnosis. Let me tell you, watching someone die in their last stages of cancer tears your heart out. I know, I worked with oncology patients. If I were to get cancer (oh please no), I would fight it like I have my other disabilites and pray that I am one of the lucky ones who gets cured.

My heart goes out to anyone who has to battle any disease. As I have said, they are all unique in the problems that they must face. Some people are taken from this earth much too soon, too soon for them to even experience life. Some people live with their diseases for decades and just manage each new problem that comes up. I personally wouldn't trade one disability for another, I am already living with what I have and have accepted that. In a perfect world, no one would get sick, but it is a reality. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
True...you could get hit by a bus or have a tragic accident. My children's psychologist says that about life. It is so unpredictable in so many ways...everyone's road is unique. How we battle disease, whether it be CF or cancer is different in everyone. If I had the choice, I wouldn't want any of the disabilities listed, but since I do indeed have CF along with muscular dystrophy, I must deal with each of their issues. With CF, the lung infections, DM, coughing, the daily meds and CPT keep me busy along with my frequent visits to club med. In the back of my head I sometimes wonder if my brave fight with any of my infections might be my last. My dystrophy affects how I walk, even how I breathe...I rely on a vent to breathe, have done so for the last 2 years. I just learn how to live with them, along with other health problems that I have. Yeah, life can be unfair...So many people suffer devastating illnesses, many of them make my issues pale in comparison to what they deal with on a daily basis. I know, I took care of so many profoundly disabled individuals who relied on vents, G-tube feedings, who were quads etc...the list goes on. Some ultimately came to terms with their disablilities and learn how to live again. Some don't. It's up to the person. Having a great support system and team is a great help in these cases.

I will tell you that when I was first vented and then sent to a skilled nursing facility, I had to learn how to dress myself, eat again (eating with a trach without aspirating does take practice- I was fed via a NG tube for some time), learn to shower again, even dress and walk. Even something as simple as going to the bathroom took some adjustments. How we take things for granted sometimes. I was one of those people. It was one of the hardest things I had to deal with. Everything that was my life prior to being trached and vented was no longer the same. I feel that it is like that with many disabilities. If you lose your sight, you learn Braille and how to walk on a sidewalk, of course with modifications....you learn how to live differently. Same with losing your hearing. You just make modifications in your life so that you can function.

As far as cancer is concerned, that disease has such a twisted road, it is so unpredictable. You could go through the chemo, radiation and be pronounced in remission, but it can come back. Not always but it can. I am always happy for the person who is deemed cured. I know it must lurk in the back of their minds whether they will get their cancer back and then have to repeat the who cycle of surgery, chemo, radiation...whatever the oncologist has in store for them. Not to mention whether it will metastisize to other organs, makes for a poorer prognosis. Some people battle this disease for years, some only have weeks or months to live after diagnosis. Let me tell you, watching someone die in their last stages of cancer tears your heart out. I know, I worked with oncology patients. If I were to get cancer (oh please no), I would fight it like I have my other disabilites and pray that I am one of the lucky ones who gets cured.

My heart goes out to anyone who has to battle any disease. As I have said, they are all unique in the problems that they must face. Some people are taken from this earth much too soon, too soon for them to even experience life. Some people live with their diseases for decades and just manage each new problem that comes up. I personally wouldn't trade one disability for another, I am already living with what I have and have accepted that. In a perfect world, no one would get sick, but it is a reality. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

coltsfan715

New member
hmm .... I seriously thought about whether or not to read this thread for a few days. Then once I read it I seriously thought about whether or not I should reply - and have decided I will.

I agree and I disagree. I agree there are situations that could be worse than having CF, BUT I think that in NO WAY, SHAPE or FORM is CF merciful. I used to look at my life and think that so many things would be worse than having CF - I would not want to be blind, deaf, missing a limb and so on. My opinions on this have changed, however, as my health has changed.

As my life has been altered due to the state of my health I have realized that I have the capabilities of coping with and handling many situations I never thought possible. I NEVER thought I would be able to handle being deaf or blind or paralyzed (parapledgic NOT quadraplegic), or missing a limb. Now I think hmm ... I could handle that I could deal with deafness, blindness, being wheelchair bound or even missing an arm or leg. I have actually said to Kurt and my mother - "If I could chop off an arm or leg right now and not have CF anymore I would do it." I actually think I posted something similar to that in one of my blogs last month.

I think as time passes and our health changes our view of this very topic will change. I know for me it has and I think for others it does as well. When you realize what you are capable of coping with you start to see that handling other illnesses is not out of the question for you and you sometimes wonder if things would be easier with a different burden with which to live.

As for your comment about thinking that Cf is one of the top 3 bad diseases, Rami. That statement puzzles me when put together with the contents of this thread. It seems contradictory to me how you can think that CF is one of the top 3 worst illnesses to have, yet you think that deafness, blindness, and many other illnesses and disabilities are worse. I agree that some of them would most likely be worse, but I think there are MANY diseases/disabilities that are not worse than CF. That statement seems contradictory to me because I would think that if you think there are so many other diseases/disabilities that are worse than CF then you would NOT put CF in the top 3 of the bad diseases. That is just something that struck me as odd about what you posted.

I do not know your situation Rami, so I am not in any means trying to judge you or what you have been through. I just know how I have felt in the past and in recent months. I have a different way of looking at CF than you, I do however consider myself a happy person with a good outlook on life. I constantly tell myself it could be worse, but I rarely think of worse diseases that I could have I mainly think of situations that I could be facing in regards to CF - meaning it sucks I am having to use O2 - it could be worse I could not even be able to bathe on my own stuff like that. Either I try to focus on the positive or I try to not think about the negative at all lol.

Take Care and everyone have a great day.
Lindsey
 
C

coltsfan715

New member
hmm .... I seriously thought about whether or not to read this thread for a few days. Then once I read it I seriously thought about whether or not I should reply - and have decided I will.

I agree and I disagree. I agree there are situations that could be worse than having CF, BUT I think that in NO WAY, SHAPE or FORM is CF merciful. I used to look at my life and think that so many things would be worse than having CF - I would not want to be blind, deaf, missing a limb and so on. My opinions on this have changed, however, as my health has changed.

As my life has been altered due to the state of my health I have realized that I have the capabilities of coping with and handling many situations I never thought possible. I NEVER thought I would be able to handle being deaf or blind or paralyzed (parapledgic NOT quadraplegic), or missing a limb. Now I think hmm ... I could handle that I could deal with deafness, blindness, being wheelchair bound or even missing an arm or leg. I have actually said to Kurt and my mother - "If I could chop off an arm or leg right now and not have CF anymore I would do it." I actually think I posted something similar to that in one of my blogs last month.

I think as time passes and our health changes our view of this very topic will change. I know for me it has and I think for others it does as well. When you realize what you are capable of coping with you start to see that handling other illnesses is not out of the question for you and you sometimes wonder if things would be easier with a different burden with which to live.

As for your comment about thinking that Cf is one of the top 3 bad diseases, Rami. That statement puzzles me when put together with the contents of this thread. It seems contradictory to me how you can think that CF is one of the top 3 worst illnesses to have, yet you think that deafness, blindness, and many other illnesses and disabilities are worse. I agree that some of them would most likely be worse, but I think there are MANY diseases/disabilities that are not worse than CF. That statement seems contradictory to me because I would think that if you think there are so many other diseases/disabilities that are worse than CF then you would NOT put CF in the top 3 of the bad diseases. That is just something that struck me as odd about what you posted.

I do not know your situation Rami, so I am not in any means trying to judge you or what you have been through. I just know how I have felt in the past and in recent months. I have a different way of looking at CF than you, I do however consider myself a happy person with a good outlook on life. I constantly tell myself it could be worse, but I rarely think of worse diseases that I could have I mainly think of situations that I could be facing in regards to CF - meaning it sucks I am having to use O2 - it could be worse I could not even be able to bathe on my own stuff like that. Either I try to focus on the positive or I try to not think about the negative at all lol.

Take Care and everyone have a great day.
Lindsey
 
C

coltsfan715

New member
hmm .... I seriously thought about whether or not to read this thread for a few days. Then once I read it I seriously thought about whether or not I should reply - and have decided I will.

I agree and I disagree. I agree there are situations that could be worse than having CF, BUT I think that in NO WAY, SHAPE or FORM is CF merciful. I used to look at my life and think that so many things would be worse than having CF - I would not want to be blind, deaf, missing a limb and so on. My opinions on this have changed, however, as my health has changed.

As my life has been altered due to the state of my health I have realized that I have the capabilities of coping with and handling many situations I never thought possible. I NEVER thought I would be able to handle being deaf or blind or paralyzed (parapledgic NOT quadraplegic), or missing a limb. Now I think hmm ... I could handle that I could deal with deafness, blindness, being wheelchair bound or even missing an arm or leg. I have actually said to Kurt and my mother - "If I could chop off an arm or leg right now and not have CF anymore I would do it." I actually think I posted something similar to that in one of my blogs last month.

I think as time passes and our health changes our view of this very topic will change. I know for me it has and I think for others it does as well. When you realize what you are capable of coping with you start to see that handling other illnesses is not out of the question for you and you sometimes wonder if things would be easier with a different burden with which to live.

As for your comment about thinking that Cf is one of the top 3 bad diseases, Rami. That statement puzzles me when put together with the contents of this thread. It seems contradictory to me how you can think that CF is one of the top 3 worst illnesses to have, yet you think that deafness, blindness, and many other illnesses and disabilities are worse. I agree that some of them would most likely be worse, but I think there are MANY diseases/disabilities that are not worse than CF. That statement seems contradictory to me because I would think that if you think there are so many other diseases/disabilities that are worse than CF then you would NOT put CF in the top 3 of the bad diseases. That is just something that struck me as odd about what you posted.

I do not know your situation Rami, so I am not in any means trying to judge you or what you have been through. I just know how I have felt in the past and in recent months. I have a different way of looking at CF than you, I do however consider myself a happy person with a good outlook on life. I constantly tell myself it could be worse, but I rarely think of worse diseases that I could have I mainly think of situations that I could be facing in regards to CF - meaning it sucks I am having to use O2 - it could be worse I could not even be able to bathe on my own stuff like that. Either I try to focus on the positive or I try to not think about the negative at all lol.

Take Care and everyone have a great day.
Lindsey
 
J

JustDucky

New member
Lindsay, I agree that when we are faced with very difficult challenges in our health, our whole perspective in life certainly changes. Never in a million years did I think that my life would take me to where it is now...it wasn't even fathomable. In my 20's, I thought my asthma was tough enough (now, I wasn't diagnosed with CF until 33 and didn't have nearly as many problems as I do now) and didn't think twice about complaining about a bad day at work...it is definitely a whole new ballgame now. I have been through about every test in the universe, have had the O2 experience and BiPAP (definitely sucks...the dry nose, lugging the tanks, getting numerous stares and trying to get used to that... I once said to a lady who was really staring "what, do I have a booger hanging out of my nose?" My family cracked up and the lady promptly turned back around and walked away. Now if she had just asked. I would have gladly answered her) and of course what I am dealing with now.
I know that I have realized how precious life is, I could easily not be here to enjoy my kids and family. There was a point when docs thought that I might not make it, that it was time for a vent...I think it was then that everything came into focus regarding life, it made me look back and then I began to think about what would happen next and how I would deal with everything, not just the vent, but how I would be a good mom to my kids, would I be strong enough emotionally....just everything. So overwhelming at first. Thoughts that I never would have thought about even 5 years ago. Back then, I worried about getting to work on time, making sure I got to the grocery store and post office....things I can't just do on a whim now. I know I am diverting here from the original post, but I think it is very pertinent, particularly after reading Lindsay's response. Where you are in life certainly affects how you think. Hugs again, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
Lindsay, I agree that when we are faced with very difficult challenges in our health, our whole perspective in life certainly changes. Never in a million years did I think that my life would take me to where it is now...it wasn't even fathomable. In my 20's, I thought my asthma was tough enough (now, I wasn't diagnosed with CF until 33 and didn't have nearly as many problems as I do now) and didn't think twice about complaining about a bad day at work...it is definitely a whole new ballgame now. I have been through about every test in the universe, have had the O2 experience and BiPAP (definitely sucks...the dry nose, lugging the tanks, getting numerous stares and trying to get used to that... I once said to a lady who was really staring "what, do I have a booger hanging out of my nose?" My family cracked up and the lady promptly turned back around and walked away. Now if she had just asked. I would have gladly answered her) and of course what I am dealing with now.
I know that I have realized how precious life is, I could easily not be here to enjoy my kids and family. There was a point when docs thought that I might not make it, that it was time for a vent...I think it was then that everything came into focus regarding life, it made me look back and then I began to think about what would happen next and how I would deal with everything, not just the vent, but how I would be a good mom to my kids, would I be strong enough emotionally....just everything. So overwhelming at first. Thoughts that I never would have thought about even 5 years ago. Back then, I worried about getting to work on time, making sure I got to the grocery store and post office....things I can't just do on a whim now. I know I am diverting here from the original post, but I think it is very pertinent, particularly after reading Lindsay's response. Where you are in life certainly affects how you think. Hugs again, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
Lindsay, I agree that when we are faced with very difficult challenges in our health, our whole perspective in life certainly changes. Never in a million years did I think that my life would take me to where it is now...it wasn't even fathomable. In my 20's, I thought my asthma was tough enough (now, I wasn't diagnosed with CF until 33 and didn't have nearly as many problems as I do now) and didn't think twice about complaining about a bad day at work...it is definitely a whole new ballgame now. I have been through about every test in the universe, have had the O2 experience and BiPAP (definitely sucks...the dry nose, lugging the tanks, getting numerous stares and trying to get used to that... I once said to a lady who was really staring "what, do I have a booger hanging out of my nose?" My family cracked up and the lady promptly turned back around and walked away. Now if she had just asked. I would have gladly answered her) and of course what I am dealing with now.
I know that I have realized how precious life is, I could easily not be here to enjoy my kids and family. There was a point when docs thought that I might not make it, that it was time for a vent...I think it was then that everything came into focus regarding life, it made me look back and then I began to think about what would happen next and how I would deal with everything, not just the vent, but how I would be a good mom to my kids, would I be strong enough emotionally....just everything. So overwhelming at first. Thoughts that I never would have thought about even 5 years ago. Back then, I worried about getting to work on time, making sure I got to the grocery store and post office....things I can't just do on a whim now. I know I am diverting here from the original post, but I think it is very pertinent, particularly after reading Lindsay's response. Where you are in life certainly affects how you think. Hugs again, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
6

65rosessamurai

Guest
I say "Ditto to what Risa Said"!
(Which was "Thank you JENN<img src="i/expressions/face-icon-small-smile.gif" border="0">"!)
 
6

65rosessamurai

Guest
I say "Ditto to what Risa Said"!
(Which was "Thank you JENN<img src="i/expressions/face-icon-small-smile.gif" border="0">"!)
 
6

65rosessamurai

Guest
I say "Ditto to what Risa Said"!
(Which was "Thank you JENN<img src="i/expressions/face-icon-small-smile.gif" border="0">"!)
 
D

Diane

New member
I respect Rami's right to feel any way he chooses about cf. In fact, i am rather impressed by Rami for not being overly angered by cf. You have to remember he is dealing with it sort of "on a wing and a prayer" being in Lebanon. He doesnt have the same kind of medical care that we have here, which makes his fight even harder for him.
 
D

Diane

New member
I respect Rami's right to feel any way he chooses about cf. In fact, i am rather impressed by Rami for not being overly angered by cf. You have to remember he is dealing with it sort of "on a wing and a prayer" being in Lebanon. He doesnt have the same kind of medical care that we have here, which makes his fight even harder for him.
 
D

Diane

New member
I respect Rami's right to feel any way he chooses about cf. In fact, i am rather impressed by Rami for not being overly angered by cf. You have to remember he is dealing with it sort of "on a wing and a prayer" being in Lebanon. He doesnt have the same kind of medical care that we have here, which makes his fight even harder for him.
 
L

littledebbie

New member
I have wanted to wait a while before responding to this so that I would not just write an "emotional" response.

While I completely disagree with the sentiment that CF is a merciful disease/disability whatever you want to say. Sometimes I meet someone and it hits me that life has not singled me out to pick on and I don't own the market on suffering. At times like that I can feel a little ashamed of myself and I suddenly feel more generous about my health. I think it's possible this post was born of a moment like this.
 
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