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Guilt

Diane

New member
Yes i have talked to my mom many times and told her how lucky i am to have what i have. My mom and i are very close and talk every day. I can just hear her disappointment when things aren't going in the right direction for me concerning cf, which is when i take the opportunity to remind her how well i am doing at 43 with cf. She has always been looking/waiting for a cure and i have told her a million times to forget that idea. A "cure" isnt a reasonable thing to believe will happen in my lifetime ( If it ever happens at all) I think the idea of a treatment <u>like insulin to a diabetic </u>is more feasible and probable. She always gets real quiet when i say that, but i dont want to let her have unrealistic expectations. My first Dr. who diagnosed me when i was 3 told my parents i would outgrow cf since i was so mild. I have no idea what he was thinking or why he would say such a thing, but for years my parents really believed it may be true since i didnt have any real signs of cf till i reached my 20's. What a shock when they finally found out that cf is progressive.....to be perfectly honest even i was in my own world of denial since i was doing so well.... till i got cepacia. Then the changes started happening and we all got a huge wake up call and crash course of cf. I dont feel as bad for me as i do for them. I know it hurts them and i dont want it to. I know parents worry no matter if their children are healthy or not, but i really dont want them to feel so bad about me.
As for my dad saying "I Love You" i think thats great because i know it isnt an easy thing for him to say so it means a lot to me, but i dont want him to worry about me, it just makes me feel bad.
 

Diane

New member
Yes i have talked to my mom many times and told her how lucky i am to have what i have. My mom and i are very close and talk every day. I can just hear her disappointment when things aren't going in the right direction for me concerning cf, which is when i take the opportunity to remind her how well i am doing at 43 with cf. She has always been looking/waiting for a cure and i have told her a million times to forget that idea. A "cure" isnt a reasonable thing to believe will happen in my lifetime ( If it ever happens at all) I think the idea of a treatment <u>like insulin to a diabetic </u>is more feasible and probable. She always gets real quiet when i say that, but i dont want to let her have unrealistic expectations. My first Dr. who diagnosed me when i was 3 told my parents i would outgrow cf since i was so mild. I have no idea what he was thinking or why he would say such a thing, but for years my parents really believed it may be true since i didnt have any real signs of cf till i reached my 20's. What a shock when they finally found out that cf is progressive.....to be perfectly honest even i was in my own world of denial since i was doing so well.... till i got cepacia. Then the changes started happening and we all got a huge wake up call and crash course of cf. I dont feel as bad for me as i do for them. I know it hurts them and i dont want it to. I know parents worry no matter if their children are healthy or not, but i really dont want them to feel so bad about me.
As for my dad saying "I Love You" i think thats great because i know it isnt an easy thing for him to say so it means a lot to me, but i dont want him to worry about me, it just makes me feel bad.
 

Diane

New member
Yes i have talked to my mom many times and told her how lucky i am to have what i have. My mom and i are very close and talk every day. I can just hear her disappointment when things aren't going in the right direction for me concerning cf, which is when i take the opportunity to remind her how well i am doing at 43 with cf. She has always been looking/waiting for a cure and i have told her a million times to forget that idea. A "cure" isnt a reasonable thing to believe will happen in my lifetime ( If it ever happens at all) I think the idea of a treatment <u>like insulin to a diabetic </u>is more feasible and probable. She always gets real quiet when i say that, but i dont want to let her have unrealistic expectations. My first Dr. who diagnosed me when i was 3 told my parents i would outgrow cf since i was so mild. I have no idea what he was thinking or why he would say such a thing, but for years my parents really believed it may be true since i didnt have any real signs of cf till i reached my 20's. What a shock when they finally found out that cf is progressive.....to be perfectly honest even i was in my own world of denial since i was doing so well.... till i got cepacia. Then the changes started happening and we all got a huge wake up call and crash course of cf. I dont feel as bad for me as i do for them. I know it hurts them and i dont want it to. I know parents worry no matter if their children are healthy or not, but i really dont want them to feel so bad about me.
As for my dad saying "I Love You" i think thats great because i know it isnt an easy thing for him to say so it means a lot to me, but i dont want him to worry about me, it just makes me feel bad.
 

Diane

New member
Yes i have talked to my mom many times and told her how lucky i am to have what i have. My mom and i are very close and talk every day. I can just hear her disappointment when things aren't going in the right direction for me concerning cf, which is when i take the opportunity to remind her how well i am doing at 43 with cf. She has always been looking/waiting for a cure and i have told her a million times to forget that idea. A "cure" isnt a reasonable thing to believe will happen in my lifetime ( If it ever happens at all) I think the idea of a treatment <u>like insulin to a diabetic </u>is more feasible and probable. She always gets real quiet when i say that, but i dont want to let her have unrealistic expectations. My first Dr. who diagnosed me when i was 3 told my parents i would outgrow cf since i was so mild. I have no idea what he was thinking or why he would say such a thing, but for years my parents really believed it may be true since i didnt have any real signs of cf till i reached my 20's. What a shock when they finally found out that cf is progressive.....to be perfectly honest even i was in my own world of denial since i was doing so well.... till i got cepacia. Then the changes started happening and we all got a huge wake up call and crash course of cf. I dont feel as bad for me as i do for them. I know it hurts them and i dont want it to. I know parents worry no matter if their children are healthy or not, but i really dont want them to feel so bad about me.
As for my dad saying "I Love You" i think thats great because i know it isnt an easy thing for him to say so it means a lot to me, but i dont want him to worry about me, it just makes me feel bad.
 

Diane

New member
Yes i have talked to my mom many times and told her how lucky i am to have what i have. My mom and i are very close and talk every day. I can just hear her disappointment when things aren't going in the right direction for me concerning cf, which is when i take the opportunity to remind her how well i am doing at 43 with cf. She has always been looking/waiting for a cure and i have told her a million times to forget that idea. A "cure" isnt a reasonable thing to believe will happen in my lifetime ( If it ever happens at all) I think the idea of a treatment <u>like insulin to a diabetic </u>is more feasible and probable. She always gets real quiet when i say that, but i dont want to let her have unrealistic expectations. My first Dr. who diagnosed me when i was 3 told my parents i would outgrow cf since i was so mild. I have no idea what he was thinking or why he would say such a thing, but for years my parents really believed it may be true since i didnt have any real signs of cf till i reached my 20's. What a shock when they finally found out that cf is progressive.....to be perfectly honest even i was in my own world of denial since i was doing so well.... till i got cepacia. Then the changes started happening and we all got a huge wake up call and crash course of cf. I dont feel as bad for me as i do for them. I know it hurts them and i dont want it to. I know parents worry no matter if their children are healthy or not, but i really dont want them to feel so bad about me.
<br /> As for my dad saying "I Love You" i think thats great because i know it isnt an easy thing for him to say so it means a lot to me, but i dont want him to worry about me, it just makes me feel bad.
 

beleache

New member
Hey Diane,
You're not going to stop your family members from worrying, thats what families do. Wouldn't you worry about them? Of course you would.
That being said, i know it sucks to feel like you are causing them so much concern/pain/guilt, you name it we cause it, lol Maybe you could sit down with all of them and read your post to them. Maybe you can all do a little counseling.
I know when we all had "the big wake up call" i needed counseling and so did my youngest son (my parents have both passed, they passed even before i was dxd) so we both had some and i think it helped us, plus we did a lot of "talking about it".
I hope you can work out a way of getting them to understand your feelings..
Oh and your dad saying " I love You" I love that.. <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Diane,
You're not going to stop your family members from worrying, thats what families do. Wouldn't you worry about them? Of course you would.
That being said, i know it sucks to feel like you are causing them so much concern/pain/guilt, you name it we cause it, lol Maybe you could sit down with all of them and read your post to them. Maybe you can all do a little counseling.
I know when we all had "the big wake up call" i needed counseling and so did my youngest son (my parents have both passed, they passed even before i was dxd) so we both had some and i think it helped us, plus we did a lot of "talking about it".
I hope you can work out a way of getting them to understand your feelings..
Oh and your dad saying " I love You" I love that.. <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Diane,
You're not going to stop your family members from worrying, thats what families do. Wouldn't you worry about them? Of course you would.
That being said, i know it sucks to feel like you are causing them so much concern/pain/guilt, you name it we cause it, lol Maybe you could sit down with all of them and read your post to them. Maybe you can all do a little counseling.
I know when we all had "the big wake up call" i needed counseling and so did my youngest son (my parents have both passed, they passed even before i was dxd) so we both had some and i think it helped us, plus we did a lot of "talking about it".
I hope you can work out a way of getting them to understand your feelings..
Oh and your dad saying " I love You" I love that.. <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Diane,
You're not going to stop your family members from worrying, thats what families do. Wouldn't you worry about them? Of course you would.
That being said, i know it sucks to feel like you are causing them so much concern/pain/guilt, you name it we cause it, lol Maybe you could sit down with all of them and read your post to them. Maybe you can all do a little counseling.
I know when we all had "the big wake up call" i needed counseling and so did my youngest son (my parents have both passed, they passed even before i was dxd) so we both had some and i think it helped us, plus we did a lot of "talking about it".
I hope you can work out a way of getting them to understand your feelings..
Oh and your dad saying " I love You" I love that.. <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Diane,
<br />You're not going to stop your family members from worrying, thats what families do. Wouldn't you worry about them? Of course you would.
<br />That being said, i know it sucks to feel like you are causing them so much concern/pain/guilt, you name it we cause it, lol Maybe you could sit down with all of them and read your post to them. Maybe you can all do a little counseling.
<br />I know when we all had "the big wake up call" i needed counseling and so did my youngest son (my parents have both passed, they passed even before i was dxd) so we both had some and i think it helped us, plus we did a lot of "talking about it".
<br />I hope you can work out a way of getting them to understand your feelings..
<br />Oh and your dad saying " I love You" I love that.. <img src="i/expressions/heart.gif" border="0"> joni
 

Juliet

New member
Diane, I go through many of the same feelings as you not wanting to make them worry. My mom has apologized a zillion times to me - as if she checked off the CF box on an order form! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I point out to her that I'm lucky they did everything right as I was growing up (even though i didn't know I had CF until a few months ago). We're all still coming to grips with it and the fact that CF is progressive. We just had our daughter tested a few days ago. Once we get the results call I'll possibly (but hopefully not!!) know first hand those feelings of guilt our Moms have been experiencing. ~Juliet
 

Juliet

New member
Diane, I go through many of the same feelings as you not wanting to make them worry. My mom has apologized a zillion times to me - as if she checked off the CF box on an order form! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I point out to her that I'm lucky they did everything right as I was growing up (even though i didn't know I had CF until a few months ago). We're all still coming to grips with it and the fact that CF is progressive. We just had our daughter tested a few days ago. Once we get the results call I'll possibly (but hopefully not!!) know first hand those feelings of guilt our Moms have been experiencing. ~Juliet
 

Juliet

New member
Diane, I go through many of the same feelings as you not wanting to make them worry. My mom has apologized a zillion times to me - as if she checked off the CF box on an order form! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I point out to her that I'm lucky they did everything right as I was growing up (even though i didn't know I had CF until a few months ago). We're all still coming to grips with it and the fact that CF is progressive. We just had our daughter tested a few days ago. Once we get the results call I'll possibly (but hopefully not!!) know first hand those feelings of guilt our Moms have been experiencing. ~Juliet
 

Juliet

New member
Diane, I go through many of the same feelings as you not wanting to make them worry. My mom has apologized a zillion times to me - as if she checked off the CF box on an order form! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I point out to her that I'm lucky they did everything right as I was growing up (even though i didn't know I had CF until a few months ago). We're all still coming to grips with it and the fact that CF is progressive. We just had our daughter tested a few days ago. Once we get the results call I'll possibly (but hopefully not!!) know first hand those feelings of guilt our Moms have been experiencing. ~Juliet
 

Juliet

New member
Diane, I go through many of the same feelings as you not wanting to make them worry. My mom has apologized a zillion times to me - as if she checked off the CF box on an order form! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I point out to her that I'm lucky they did everything right as I was growing up (even though i didn't know I had CF until a few months ago). We're all still coming to grips with it and the fact that CF is progressive. We just had our daughter tested a few days ago. Once we get the results call I'll possibly (but hopefully not!!) know first hand those feelings of guilt our Moms have been experiencing. ~Juliet
 

Faust

New member
Put yourself on the flip side. Diane, I respect you very much so, and I would have to say in comparison to some others, I put you on a form of a pedestal in some ways. Everything in this life is perspective. At first the polar bear massacring the baby seal that strays away from it's parents and gets violently eaten is a very disturbing thing. Especially so if you are a seal. If you take a step back, everything falls into place. Your parents are freaking for obvious reasons, in their own ways. Your mom has a nice chunk of guilt because she was party to your conception. Your dad does as well, but only until recently felt the same way. They both have their own personalities...And react in their own ways.

If your dad was an ice king before, and being averse to telling his daughter "I love you", maybe seeing the reality of the finality of life of one of his creations really has helped him change his mind. It's the same general principle behind two twins not talking to each other for 20 years, until one of them ends up on their death bed, and then the other has a "coming to jesus" personal epiphany and decides it's stupid to not talk to his twin, who is soon to depart this world.

My mom had me late. She had me at 39. Her related crap associated with me and my disease is long gone. She is now 76. Every once in a while when she sees me struggling she gets a little touchy about things, but you have to remember, just like my mom, they are thinking about their physical and emotional legacy they left behind in this life. What about if you were a virologist on your death bed at the age of 80, and the only thing of any substance you could claim, was creating small pox? I would be pretty pissed off at my life if that was the case. The amount of introspective thought from that point before or afterwards (when it hits you) would be immense.


Your parents are nearing the end of their lives. There is a ton of thinking going on. Internally and externally. This is the time when they each both individually as people, and collectively as parents, think back on their lives and play a big "WHAT IF"/"maybe"/"Could of"/"Was I wrong for" game. Your dad feels more susceptible to emotional neglect towards you due to your disease, your age, and the possible stage you are in now. Your mom feels the same, but to whatever degree, and in her own way.


My dad died of cancer. He was a brilliant man, and I am thankful I received a good portion of his brain in my DNA. He was also a complete piece of ***** when it comes to being a father. While he was dying of cancer, he apologized to all of us, and absolutely felt remorse for the bad decisions he made in this life. They are happy they had you, and enjoy what you brought to their lives, but in a way they are sorrowed they burdened you with this amount of suffering. They know no other way other than saying the things you mentioned to try and make you more comfortable, and them as well.


Don't let it freak you out. It is their way to do the right thing to show empathy and grievance in the later hours of their life. We have all done it in our own ways, in various degrees. I could give examples, but i'm sure you guys know what I am saying.
 

Faust

New member
Put yourself on the flip side. Diane, I respect you very much so, and I would have to say in comparison to some others, I put you on a form of a pedestal in some ways. Everything in this life is perspective. At first the polar bear massacring the baby seal that strays away from it's parents and gets violently eaten is a very disturbing thing. Especially so if you are a seal. If you take a step back, everything falls into place. Your parents are freaking for obvious reasons, in their own ways. Your mom has a nice chunk of guilt because she was party to your conception. Your dad does as well, but only until recently felt the same way. They both have their own personalities...And react in their own ways.

If your dad was an ice king before, and being averse to telling his daughter "I love you", maybe seeing the reality of the finality of life of one of his creations really has helped him change his mind. It's the same general principle behind two twins not talking to each other for 20 years, until one of them ends up on their death bed, and then the other has a "coming to jesus" personal epiphany and decides it's stupid to not talk to his twin, who is soon to depart this world.

My mom had me late. She had me at 39. Her related crap associated with me and my disease is long gone. She is now 76. Every once in a while when she sees me struggling she gets a little touchy about things, but you have to remember, just like my mom, they are thinking about their physical and emotional legacy they left behind in this life. What about if you were a virologist on your death bed at the age of 80, and the only thing of any substance you could claim, was creating small pox? I would be pretty pissed off at my life if that was the case. The amount of introspective thought from that point before or afterwards (when it hits you) would be immense.


Your parents are nearing the end of their lives. There is a ton of thinking going on. Internally and externally. This is the time when they each both individually as people, and collectively as parents, think back on their lives and play a big "WHAT IF"/"maybe"/"Could of"/"Was I wrong for" game. Your dad feels more susceptible to emotional neglect towards you due to your disease, your age, and the possible stage you are in now. Your mom feels the same, but to whatever degree, and in her own way.


My dad died of cancer. He was a brilliant man, and I am thankful I received a good portion of his brain in my DNA. He was also a complete piece of ***** when it comes to being a father. While he was dying of cancer, he apologized to all of us, and absolutely felt remorse for the bad decisions he made in this life. They are happy they had you, and enjoy what you brought to their lives, but in a way they are sorrowed they burdened you with this amount of suffering. They know no other way other than saying the things you mentioned to try and make you more comfortable, and them as well.


Don't let it freak you out. It is their way to do the right thing to show empathy and grievance in the later hours of their life. We have all done it in our own ways, in various degrees. I could give examples, but i'm sure you guys know what I am saying.
 

Faust

New member
Put yourself on the flip side. Diane, I respect you very much so, and I would have to say in comparison to some others, I put you on a form of a pedestal in some ways. Everything in this life is perspective. At first the polar bear massacring the baby seal that strays away from it's parents and gets violently eaten is a very disturbing thing. Especially so if you are a seal. If you take a step back, everything falls into place. Your parents are freaking for obvious reasons, in their own ways. Your mom has a nice chunk of guilt because she was party to your conception. Your dad does as well, but only until recently felt the same way. They both have their own personalities...And react in their own ways.

If your dad was an ice king before, and being averse to telling his daughter "I love you", maybe seeing the reality of the finality of life of one of his creations really has helped him change his mind. It's the same general principle behind two twins not talking to each other for 20 years, until one of them ends up on their death bed, and then the other has a "coming to jesus" personal epiphany and decides it's stupid to not talk to his twin, who is soon to depart this world.

My mom had me late. She had me at 39. Her related crap associated with me and my disease is long gone. She is now 76. Every once in a while when she sees me struggling she gets a little touchy about things, but you have to remember, just like my mom, they are thinking about their physical and emotional legacy they left behind in this life. What about if you were a virologist on your death bed at the age of 80, and the only thing of any substance you could claim, was creating small pox? I would be pretty pissed off at my life if that was the case. The amount of introspective thought from that point before or afterwards (when it hits you) would be immense.


Your parents are nearing the end of their lives. There is a ton of thinking going on. Internally and externally. This is the time when they each both individually as people, and collectively as parents, think back on their lives and play a big "WHAT IF"/"maybe"/"Could of"/"Was I wrong for" game. Your dad feels more susceptible to emotional neglect towards you due to your disease, your age, and the possible stage you are in now. Your mom feels the same, but to whatever degree, and in her own way.


My dad died of cancer. He was a brilliant man, and I am thankful I received a good portion of his brain in my DNA. He was also a complete piece of ***** when it comes to being a father. While he was dying of cancer, he apologized to all of us, and absolutely felt remorse for the bad decisions he made in this life. They are happy they had you, and enjoy what you brought to their lives, but in a way they are sorrowed they burdened you with this amount of suffering. They know no other way other than saying the things you mentioned to try and make you more comfortable, and them as well.


Don't let it freak you out. It is their way to do the right thing to show empathy and grievance in the later hours of their life. We have all done it in our own ways, in various degrees. I could give examples, but i'm sure you guys know what I am saying.
 

Faust

New member
Put yourself on the flip side. Diane, I respect you very much so, and I would have to say in comparison to some others, I put you on a form of a pedestal in some ways. Everything in this life is perspective. At first the polar bear massacring the baby seal that strays away from it's parents and gets violently eaten is a very disturbing thing. Especially so if you are a seal. If you take a step back, everything falls into place. Your parents are freaking for obvious reasons, in their own ways. Your mom has a nice chunk of guilt because she was party to your conception. Your dad does as well, but only until recently felt the same way. They both have their own personalities...And react in their own ways.

If your dad was an ice king before, and being averse to telling his daughter "I love you", maybe seeing the reality of the finality of life of one of his creations really has helped him change his mind. It's the same general principle behind two twins not talking to each other for 20 years, until one of them ends up on their death bed, and then the other has a "coming to jesus" personal epiphany and decides it's stupid to not talk to his twin, who is soon to depart this world.

My mom had me late. She had me at 39. Her related crap associated with me and my disease is long gone. She is now 76. Every once in a while when she sees me struggling she gets a little touchy about things, but you have to remember, just like my mom, they are thinking about their physical and emotional legacy they left behind in this life. What about if you were a virologist on your death bed at the age of 80, and the only thing of any substance you could claim, was creating small pox? I would be pretty pissed off at my life if that was the case. The amount of introspective thought from that point before or afterwards (when it hits you) would be immense.


Your parents are nearing the end of their lives. There is a ton of thinking going on. Internally and externally. This is the time when they each both individually as people, and collectively as parents, think back on their lives and play a big "WHAT IF"/"maybe"/"Could of"/"Was I wrong for" game. Your dad feels more susceptible to emotional neglect towards you due to your disease, your age, and the possible stage you are in now. Your mom feels the same, but to whatever degree, and in her own way.


My dad died of cancer. He was a brilliant man, and I am thankful I received a good portion of his brain in my DNA. He was also a complete piece of ***** when it comes to being a father. While he was dying of cancer, he apologized to all of us, and absolutely felt remorse for the bad decisions he made in this life. They are happy they had you, and enjoy what you brought to their lives, but in a way they are sorrowed they burdened you with this amount of suffering. They know no other way other than saying the things you mentioned to try and make you more comfortable, and them as well.


Don't let it freak you out. It is their way to do the right thing to show empathy and grievance in the later hours of their life. We have all done it in our own ways, in various degrees. I could give examples, but i'm sure you guys know what I am saying.
 

Faust

New member
Put yourself on the flip side. Diane, I respect you very much so, and I would have to say in comparison to some others, I put you on a form of a pedestal in some ways. Everything in this life is perspective. At first the polar bear massacring the baby seal that strays away from it's parents and gets violently eaten is a very disturbing thing. Especially so if you are a seal. If you take a step back, everything falls into place. Your parents are freaking for obvious reasons, in their own ways. Your mom has a nice chunk of guilt because she was party to your conception. Your dad does as well, but only until recently felt the same way. They both have their own personalities...And react in their own ways.
<br />
<br />If your dad was an ice king before, and being averse to telling his daughter "I love you", maybe seeing the reality of the finality of life of one of his creations really has helped him change his mind. It's the same general principle behind two twins not talking to each other for 20 years, until one of them ends up on their death bed, and then the other has a "coming to jesus" personal epiphany and decides it's stupid to not talk to his twin, who is soon to depart this world.
<br />
<br />My mom had me late. She had me at 39. Her related crap associated with me and my disease is long gone. She is now 76. Every once in a while when she sees me struggling she gets a little touchy about things, but you have to remember, just like my mom, they are thinking about their physical and emotional legacy they left behind in this life. What about if you were a virologist on your death bed at the age of 80, and the only thing of any substance you could claim, was creating small pox? I would be pretty pissed off at my life if that was the case. The amount of introspective thought from that point before or afterwards (when it hits you) would be immense.
<br />
<br />
<br />Your parents are nearing the end of their lives. There is a ton of thinking going on. Internally and externally. This is the time when they each both individually as people, and collectively as parents, think back on their lives and play a big "WHAT IF"/"maybe"/"Could of"/"Was I wrong for" game. Your dad feels more susceptible to emotional neglect towards you due to your disease, your age, and the possible stage you are in now. Your mom feels the same, but to whatever degree, and in her own way.
<br />
<br />
<br />My dad died of cancer. He was a brilliant man, and I am thankful I received a good portion of his brain in my DNA. He was also a complete piece of ***** when it comes to being a father. While he was dying of cancer, he apologized to all of us, and absolutely felt remorse for the bad decisions he made in this life. They are happy they had you, and enjoy what you brought to their lives, but in a way they are sorrowed they burdened you with this amount of suffering. They know no other way other than saying the things you mentioned to try and make you more comfortable, and them as well.
<br />
<br />
<br />Don't let it freak you out. It is their way to do the right thing to show empathy and grievance in the later hours of their life. We have all done it in our own ways, in various degrees. I could give examples, but i'm sure you guys know what I am saying.
<br />
<br />
 
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