I dont sugarcoat things with my Mom, but I sure dont tell her a lot either. I do avoid going to her house when I am not myself because she picks up on things by how much food I eat. I cant "vent" to her or even fill her in on the truth because she gets too emotional. My hubby gets the info as he needs it. I have such few days that I truly feel great that I tell him when its a day that I just cant handle things. I do tell him when I have had hemoptysis tho because my activities are immediately limited then. I use to lie to my doctors. Mainly because I didnt want to address what needed to be addressed. It wasnt until on this forum that someone pointed out if the doctors are told one thing by a patient, but tests indicate something else then the treatment plan created could be all wrong & have an undesired affect. I no longer lie to the doctor. I dont call every time there is an issue, but when I go down for appts they know anything that has taken place even if I didnt call them.
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Do you lie
- Thread starter JennifersHope
- Start date
kayleesgrandma
New member
You better not lie to me missy! HEHE. I wanted to tell Laren, I loved her "circle" idea was great, but Jenn beat me to it! It's nice to have someone so in tune to you, and be able to tell them eveything--to be so in tune that sometimes you dont even need to speak and they just know! Otherwise, I definitely think the parents should know, unless it's a minor thing. They have invested a lot of heartache and time in helping you to grow up--they shouldn't be too far out of the loop. But like Mel said, her mom can only handle so much--it's obviously something you would know personaly how to handle. But Jenn, you shouldn't go it alone so much . . .at least come here and tell us!<img src="i/expressions/heart.gif" border="0">
kayleesgrandma
New member
You better not lie to me missy! HEHE. I wanted to tell Laren, I loved her "circle" idea was great, but Jenn beat me to it! It's nice to have someone so in tune to you, and be able to tell them eveything--to be so in tune that sometimes you dont even need to speak and they just know! Otherwise, I definitely think the parents should know, unless it's a minor thing. They have invested a lot of heartache and time in helping you to grow up--they shouldn't be too far out of the loop. But like Mel said, her mom can only handle so much--it's obviously something you would know personaly how to handle. But Jenn, you shouldn't go it alone so much . . .at least come here and tell us!<img src="i/expressions/heart.gif" border="0">
kayleesgrandma
New member
You better not lie to me missy! HEHE. I wanted to tell Laren, I loved her "circle" idea was great, but Jenn beat me to it! It's nice to have someone so in tune to you, and be able to tell them eveything--to be so in tune that sometimes you dont even need to speak and they just know! Otherwise, I definitely think the parents should know, unless it's a minor thing. They have invested a lot of heartache and time in helping you to grow up--they shouldn't be too far out of the loop. But like Mel said, her mom can only handle so much--it's obviously something you would know personaly how to handle. But Jenn, you shouldn't go it alone so much . . .at least come here and tell us!<img src="i/expressions/heart.gif" border="0">
coltsfan715
New member
Jenn,
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
coltsfan715
New member
Jenn,
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
coltsfan715
New member
Jenn,
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
It is so bizarre that you would post this. I just had a conversation like this with my mom yesterday. We were talking about how I never admitted how sick I really was to anyone - right up until transplant. I was always trying to make light of the situation and downplay what was really going on. It was more like I can do THAT eventually it will just take me longer than you -- and we all know longer never came. Instead of my just saying I can't do that.
I finally reached a point where I had to start coming clean about different things because people were thinking I was just making excuses and trying to use CF as a crutch or something - when that is so not how I am. I think for me it boiled down to not wanting to say the words I am getting sick or sicker. I always tried to protect my parents or friends from the gruesome reality of my health, sometimes I did better than others. I did that for the same reason you say you do it - why worry people when there is nothing they can do about the situation - it is what it is.
Now I have realized who cares. It is what it is and if these people are going to be in my life and care for me they have a right to know and not get blindsided - I know I don't like to be blindsided so why should I do it to someone else.
Oh Well - that is my view on that - and honestly I didn't change my outlook on that until very recently - meaning the past few months. I don't think it is right or wrong just a matter of your comfort level with the whole thing.
Take Care,
Lindsey
My husband goes to all my appt's so he hears everything first hand. At home he hears my thoughts and suspicions on my cf situation. He's my sounding board. My mom always gets an honest response when she asks how I'm doing. I also share all test results with her as well as "changes in status." Other than that I don't get into the nighty gritty with many other people. I tell my dad if things are better, the same or worse and what the plan is. My girlfriends I update when I'm ill or annually a thorough update. Bottom line when my health declines I don't ever want someone to say, "I had no idea this could happen." or to be surprised by events that very well might happen in the future such as lung transplant. I'm an open book but not a sob story.
My husband goes to all my appt's so he hears everything first hand. At home he hears my thoughts and suspicions on my cf situation. He's my sounding board. My mom always gets an honest response when she asks how I'm doing. I also share all test results with her as well as "changes in status." Other than that I don't get into the nighty gritty with many other people. I tell my dad if things are better, the same or worse and what the plan is. My girlfriends I update when I'm ill or annually a thorough update. Bottom line when my health declines I don't ever want someone to say, "I had no idea this could happen." or to be surprised by events that very well might happen in the future such as lung transplant. I'm an open book but not a sob story.
My husband goes to all my appt's so he hears everything first hand. At home he hears my thoughts and suspicions on my cf situation. He's my sounding board. My mom always gets an honest response when she asks how I'm doing. I also share all test results with her as well as "changes in status." Other than that I don't get into the nighty gritty with many other people. I tell my dad if things are better, the same or worse and what the plan is. My girlfriends I update when I'm ill or annually a thorough update. Bottom line when my health declines I don't ever want someone to say, "I had no idea this could happen." or to be surprised by events that very well might happen in the future such as lung transplant. I'm an open book but not a sob story.
I think you should always be honest with your doctor. I don't have CF but i tend to downplay concerns i have about my dd to the docs (mainly because i don't trust myself) and there have been times i have left the docs office feeling dissatisfied and guilty and like a horrible mom.
I think you should always be honest with your doctor. I don't have CF but i tend to downplay concerns i have about my dd to the docs (mainly because i don't trust myself) and there have been times i have left the docs office feeling dissatisfied and guilty and like a horrible mom.
I think you should always be honest with your doctor. I don't have CF but i tend to downplay concerns i have about my dd to the docs (mainly because i don't trust myself) and there have been times i have left the docs office feeling dissatisfied and guilty and like a horrible mom.
I tend to down play things most of the time to people, but i also let reality get in there just enough to let them see this isnt an easy ride. I have the hardest time letting my parents know when things are going bad. My mother gets very upset, i know her worst fear is losing me, and i tend to downplay things with her as well. I do however keep her up to date on things going on with cf namely people on the site who have had transplants, or just started using o2, or have passed away , and she and i will get into a deeper discussion about cf and thats when i will gently remind her that as much as she gets upset about possibly losing me to cf someday, she is VERY lucky to have had me as long as she has already. I do pretty much the same with my father. The problem is.... I was healthy as a child, teen and all the way into my late 20's. My parents got a very distorted view of cf as an almost" easy " disease because they had never seen anything bad with it <i>Whats worse is , when i was diagnosed at 3 my doctor told my parents it (cf) was so mild i would outgrow it </i>. When i got cepacia, things changed. I learned a whole lot more about cf in the past 4 - 5 years i have been coming to this board, and i share bits and pieces with who i feel its necessary to share it with. I dont wear cf like a badge and tell everyone i meet about it, but i do tell people when i feel its necessary and appropriate to tell them.
I tend to down play things most of the time to people, but i also let reality get in there just enough to let them see this isnt an easy ride. I have the hardest time letting my parents know when things are going bad. My mother gets very upset, i know her worst fear is losing me, and i tend to downplay things with her as well. I do however keep her up to date on things going on with cf namely people on the site who have had transplants, or just started using o2, or have passed away , and she and i will get into a deeper discussion about cf and thats when i will gently remind her that as much as she gets upset about possibly losing me to cf someday, she is VERY lucky to have had me as long as she has already. I do pretty much the same with my father. The problem is.... I was healthy as a child, teen and all the way into my late 20's. My parents got a very distorted view of cf as an almost" easy " disease because they had never seen anything bad with it <i>Whats worse is , when i was diagnosed at 3 my doctor told my parents it (cf) was so mild i would outgrow it </i>. When i got cepacia, things changed. I learned a whole lot more about cf in the past 4 - 5 years i have been coming to this board, and i share bits and pieces with who i feel its necessary to share it with. I dont wear cf like a badge and tell everyone i meet about it, but i do tell people when i feel its necessary and appropriate to tell them.
I tend to down play things most of the time to people, but i also let reality get in there just enough to let them see this isnt an easy ride. I have the hardest time letting my parents know when things are going bad. My mother gets very upset, i know her worst fear is losing me, and i tend to downplay things with her as well. I do however keep her up to date on things going on with cf namely people on the site who have had transplants, or just started using o2, or have passed away , and she and i will get into a deeper discussion about cf and thats when i will gently remind her that as much as she gets upset about possibly losing me to cf someday, she is VERY lucky to have had me as long as she has already. I do pretty much the same with my father. The problem is.... I was healthy as a child, teen and all the way into my late 20's. My parents got a very distorted view of cf as an almost" easy " disease because they had never seen anything bad with it <i>Whats worse is , when i was diagnosed at 3 my doctor told my parents it (cf) was so mild i would outgrow it </i>. When i got cepacia, things changed. I learned a whole lot more about cf in the past 4 - 5 years i have been coming to this board, and i share bits and pieces with who i feel its necessary to share it with. I dont wear cf like a badge and tell everyone i meet about it, but i do tell people when i feel its necessary and appropriate to tell them.
My late husband, Rip, told the docs and me the truth. But he didn't tell his kids or his siblings or his mother when she was alive much at all. Those folks tended to freak out and not be helpful. His kids would withdraw in fright. His sisters would decide he must be handling things wrong to go downhill and would come in and try to take over or would lecture him (and me). (They certainly were not empathetic and supportive.)
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
My late husband, Rip, told the docs and me the truth. But he didn't tell his kids or his siblings or his mother when she was alive much at all. Those folks tended to freak out and not be helpful. His kids would withdraw in fright. His sisters would decide he must be handling things wrong to go downhill and would come in and try to take over or would lecture him (and me). (They certainly were not empathetic and supportive.)
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
My late husband, Rip, told the docs and me the truth. But he didn't tell his kids or his siblings or his mother when she was alive much at all. Those folks tended to freak out and not be helpful. His kids would withdraw in fright. His sisters would decide he must be handling things wrong to go downhill and would come in and try to take over or would lecture him (and me). (They certainly were not empathetic and supportive.)
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
I wonder if the reason that adults (including the 21 year old adult whose mother posted about in her blog) don't share the information with their parents is because the parents tend to freak in the same way Rip's sisters did.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
I I do however keep her up to date on things going on with cf namely people on the site who have had transplants, or just started using o2, or have passed away </end quote></div>
You are fortunate. I cant speak of any of this to my Mom. I believe the guilt is too much for my Mom. IF she truly listens its with so much guilt in her eye and tears in her heart (or is the other way lol) that I dont think she hears me anyway!
I I do however keep her up to date on things going on with cf namely people on the site who have had transplants, or just started using o2, or have passed away </end quote></div>
You are fortunate. I cant speak of any of this to my Mom. I believe the guilt is too much for my Mom. IF she truly listens its with so much guilt in her eye and tears in her heart (or is the other way lol) that I dont think she hears me anyway!