When is it time?

Incomudrox · Oct 19, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: just1more 1) I'm not showing off anything. The disclaimer in my signature is there for liability purposes only. Period. 2) I don't intend to ban anyone, in 3+ years I can count the users that I have taken ANY action against on 1 hand and they were for clear issues; not personal opinions. 3) I have locked on average 2-3 threads/year on this site. Every one because that thread had reached a point where it was needed. Incomudrox, I did not judge your choice to fight and live. One of my closest friends fought to her dying breath well older than you are and I have great respect for her. But the OP was looking for SUPPORT, and telling her that she will die when she gives up is NOT support. My reply was specific in that you were rude to the OP when she is clearly struggling right now and I felt it was unjustified. There are members of this site that have reached a point in their struggle that they decided it was time. They have discontinued treatments, utilized comfort measures and said their goodbyes. Would you imply that you are in a position to say they were wrong because you chose a different path? This is a community, and it exists for the support and knowledge we can provide each other. It is not my community, it is not yours, it belongs to the CF family as a whole.</end quote>

I am GLAD you see that this is my personal opinion. A forum is for DEBATE, as far back as it goes to even to roman time. So one can voice his or her opinion, on the other hand repeated person attacks in my opinion are grounds for banning. If you feel as though this was a person attack on you I apologize. I have been a moderator on several forums and it's something I won't stand for either. I try to walk a fine line however, as that is what is in my human nature. However I will and do voice my whole-hearted and honest opinion as I so believe it. I agree the OP is looking for support but even as the OP admits this may have been opening a can of worms, and it did. While I don't retract what I said, as it is what I believe I should say I meant it out of trying to remain hopeful and to NOT give up, more of an implied statement. I say a lot of things, which require people to read between the lines. I have done this all my life including my job and it has gotten me in trouble so of the time because people take what I say to the fullest extent of the literal meaning of the words I say. Someone who chooses a different path has the right to do that. It is their wish to follow the path which they BELIEVE in, either for personal or religious reasons. However it is my right, that I don't have to agree with or like their believe, but I can not stop them from it. I can only give advice or opinion and hope that they change their mind because, of that fact that I believe my belief is correct. Does it mean my belief is correct? No it does not. No one is to say that anyone is right because everything is subjective to what a persons beliefs are. It goes back to simple human beginnings. Like why a cup is called a cup? Because everyone agrees that is it a cup.

Incomudrox · Oct 19, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: just1more 1) I'm not showing off anything. The disclaimer in my signature is there for liability purposes only. Period. 2) I don't intend to ban anyone, in 3+ years I can count the users that I have taken ANY action against on 1 hand and they were for clear issues; not personal opinions. 3) I have locked on average 2-3 threads/year on this site. Every one because that thread had reached a point where it was needed. Incomudrox, I did not judge your choice to fight and live. One of my closest friends fought to her dying breath well older than you are and I have great respect for her. But the OP was looking for SUPPORT, and telling her that she will die when she gives up is NOT support. My reply was specific in that you were rude to the OP when she is clearly struggling right now and I felt it was unjustified. There are members of this site that have reached a point in their struggle that they decided it was time. They have discontinued treatments, utilized comfort measures and said their goodbyes. Would you imply that you are in a position to say they were wrong because you chose a different path? This is a community, and it exists for the support and knowledge we can provide each other. It is not my community, it is not yours, it belongs to the CF family as a whole.</end quote>
 
 I am GLAD you see that this is my personal opinion. A forum is for DEBATE, as far back as it goes to even to roman time. So one can voice his or her opinion, on the other hand repeated person attacks in my opinion are grounds for banning. If you feel as though this was a person attack on you I apologize. I have been a moderator on several forums and it's something I won't stand for either. I try to walk a fine line however, as that is what is in my human nature. However I will and do voice my whole-hearted and honest opinion as I so believe it. I agree the OP is looking for support but even as the OP admits this may have been opening a can of worms, and it did. While I don't retract what I said, as it is what I believe I should say I meant it out of trying to remain hopeful and to NOT give up, more of an implied statement. I say a lot of things, which require people to read between the lines. I have done this all my life including my job and it has gotten me in trouble so of the time because people take what I say to the fullest extent of the literal meaning of the words I say. Someone who chooses a different path has the right to do that. It is their wish to follow the path which they BELIEVE in, either for personal or religious reasons. However it is my right, that I don't have to agree with or like their believe, but I can not stop them from it. I can only give advice or opinion and hope that they change their mind because, of that fact that I believe my belief is correct. Does it mean my belief is correct? No it does not. No one is to say that anyone is right because everything is subjective to what a persons beliefs are. It goes back to simple human beginnings. Like why a cup is called a cup? Because everyone agrees that is it a cup.

Printer · Oct 19, 2011

Tom:

When someone comes here and asks for opinions, they are opening themselves to all opinions, not only those that agree with you. The opinions that are then expressed may or may not be supportive of the original poster. Sometimes, some of us need to be told that we are wrong without the decender being ridiculed. Support is not always in order.

Bill

Bill

Printer · Oct 19, 2011

Tom:

When someone comes here and asks for opinions, they are opening themselves to all opinions, not only those that agree with you. The opinions that are then expressed may or may not be supportive of the original poster. Sometimes, some of us need to be told that we are wrong without the decender being ridiculed. Support is not always in order.

Bill

Bill

Printer · Oct 19, 2011

Tom:
 
 When someone comes here and asks for opinions, they are opening themselves to all opinions, not only those that agree with you. The opinions that are then expressed may or may not be supportive of the original poster. Sometimes, some of us need to be told that we are wrong without the decender being ridiculed. Support is not always in order.
 
 Bill
 
 Bill

just1more · Oct 19, 2011

Bill, Incomdrux chose to disagree with the OP and per you that is ok.

I then posted, "I strongly disagree" with Incomdrux. How is what I said ridicule?

The ONLY difference is that the 1st reply was a short statement, which as been since clarified; whereas I explained my opinion initially.

As for agreeing with me, that happens rarely so trust me that has NOTHING to do with it. But so long as hold you dearly to your right to an opinion, so do the rest of us because that is a 2-way street.

just1more · Oct 19, 2011

Bill, Incomdrux chose to disagree with the OP and per you that is ok.

I then posted, "I strongly disagree" with Incomdrux. How is what I said ridicule?

The ONLY difference is that the 1st reply was a short statement, which as been since clarified; whereas I explained my opinion initially.

As for agreeing with me, that happens rarely so trust me that has NOTHING to do with it. But so long as hold you dearly to your right to an opinion, so do the rest of us because that is a 2-way street.

just1more · Oct 19, 2011

Bill, Incomdrux chose to disagree with the OP and per you that is ok.
 
 I then posted, "I strongly disagree" with Incomdrux. How is what I said ridicule?
 
 The ONLY difference is that the 1st reply was a short statement, which as been since clarified; whereas I explained my opinion initially.
 
 As for agreeing with me, that happens rarely so trust me that has NOTHING to do with it. But so long as hold you dearly to your right to an opinion, so do the rest of us because that is a 2-way street.

Printer · Oct 19, 2011

Tom:

Like I said, you can tell me that I am wrong.

Bill

Printer · Oct 19, 2011

Tom:

Like I said, you can tell me that I am wrong.

Bill

Printer · Oct 19, 2011

Tom:
 
 Like I said, you can tell me that I am wrong.
 
 Bill

Ldude916 · Oct 19, 2011

Okay, so let's get back to the original issue at hand here - which is Randomgirl's feelings and her question and give her some valuable support!

Randomgirl - I have been listed on the tx list since January and my FEV is 25%. I use 5 liters of oxygen 24/7. I use 8 liters of oxygen when exercising. I maintain my weight via a feeding tube. I stopped working in February. My whole day consists of taking care of myself.....however,

I wasn't quite in the place where you are thinking about dying, but I definitely was EXHAUSTED! What turned my energy level around was Pulmonary Rehab. I thought to myself - "I can't even get off this couch, how am I going to exercise?" But, 3 months later, my life was SO different. Yes, I am still on oxygen and my FEV sucks, but I had ENERGY to keep fighting the battle. I was able to go out to movies, have friends over, walk my dogs around the block - things that I DREADED doing just 3 months prior!!

Are you in pulmonary rehabilitation? This is a requirement for my Transplant Center. If you aren't, I would 100% consider signing up for this very valuable program.

Also, do you have a lot of family/siblings/friends that you can reach out to and share your feelings with? I'm not sure what kind of support system you have, but I find that asking others for help and comfort really helps me keep a positive attitude. When I see the joy I can bring to other's lives, it makes me want to fight harder to stick around =)

Do you have anyone who has had a transplant that you can talk to as a mentor? I find this really helps me be positive, too. I have a coach at my back encouraging me to do all the right things. He's been transplanted for 10 yrs now! Is there a transplant support group at your center?

I recommend that you read "Sick Girl Speaks!" by Tiffany Christensen. I think you will relate to Tiffany and it has such wonderful guidance in it.

I hope you can continue to find the joy in life that wills you to keep fighting. Your gift of new lungs/liver will come, but you must remain strong, both mentally and physically! You can do it! There are many of us doing it everyday, and I know how you feel! It's funny....I am more scared of losing my loved ones, family and friends than I am of dying myself...but I have to think of how my loved ones feel about me and they want me to stick around for a long time!

XO!

Ldude916 · Oct 19, 2011

Okay, so let's get back to the original issue at hand here - which is Randomgirl's feelings and her question and give her some valuable support!

Randomgirl - I have been listed on the tx list since January and my FEV is 25%. I use 5 liters of oxygen 24/7. I use 8 liters of oxygen when exercising. I maintain my weight via a feeding tube. I stopped working in February. My whole day consists of taking care of myself.....however,

I wasn't quite in the place where you are thinking about dying, but I definitely was EXHAUSTED! What turned my energy level around was Pulmonary Rehab. I thought to myself - "I can't even get off this couch, how am I going to exercise?" But, 3 months later, my life was SO different. Yes, I am still on oxygen and my FEV sucks, but I had ENERGY to keep fighting the battle. I was able to go out to movies, have friends over, walk my dogs around the block - things that I DREADED doing just 3 months prior!!

Are you in pulmonary rehabilitation? This is a requirement for my Transplant Center. If you aren't, I would 100% consider signing up for this very valuable program.

Also, do you have a lot of family/siblings/friends that you can reach out to and share your feelings with? I'm not sure what kind of support system you have, but I find that asking others for help and comfort really helps me keep a positive attitude. When I see the joy I can bring to other's lives, it makes me want to fight harder to stick around =)

Do you have anyone who has had a transplant that you can talk to as a mentor? I find this really helps me be positive, too. I have a coach at my back encouraging me to do all the right things. He's been transplanted for 10 yrs now! Is there a transplant support group at your center?

I recommend that you read "Sick Girl Speaks!" by Tiffany Christensen. I think you will relate to Tiffany and it has such wonderful guidance in it.

I hope you can continue to find the joy in life that wills you to keep fighting. Your gift of new lungs/liver will come, but you must remain strong, both mentally and physically! You can do it! There are many of us doing it everyday, and I know how you feel! It's funny....I am more scared of losing my loved ones, family and friends than I am of dying myself...but I have to think of how my loved ones feel about me and they want me to stick around for a long time!

XO!

Ldude916 · Oct 19, 2011

Okay, so let's get back to the original issue at hand here - which is Randomgirl's feelings and her question and give her some valuable support!
 
 Randomgirl - I have been listed on the tx list since January and my FEV is 25%. I use 5 liters of oxygen 24/7. I use 8 liters of oxygen when exercising. I maintain my weight via a feeding tube. I stopped working in February. My whole day consists of taking care of myself.....however,
 
 I wasn't quite in the place where you are thinking about dying, but I definitely was EXHAUSTED! What turned my energy level around was Pulmonary Rehab. I thought to myself - "I can't even get off this couch, how am I going to exercise?" But, 3 months later, my life was SO different. Yes, I am still on oxygen and my FEV sucks, but I had ENERGY to keep fighting the battle. I was able to go out to movies, have friends over, walk my dogs around the block - things that I DREADED doing just 3 months prior!!
 
 Are you in pulmonary rehabilitation? This is a requirement for my Transplant Center. If you aren't, I would 100% consider signing up for this very valuable program.
 
 Also, do you have a lot of family/siblings/friends that you can reach out to and share your feelings with? I'm not sure what kind of support system you have, but I find that asking others for help and comfort really helps me keep a positive attitude. When I see the joy I can bring to other's lives, it makes me want to fight harder to stick around =)
 
 Do you have anyone who has had a transplant that you can talk to as a mentor? I find this really helps me be positive, too. I have a coach at my back encouraging me to do all the right things. He's been transplanted for 10 yrs now! Is there a transplant support group at your center?
 
 I recommend that you read "Sick Girl Speaks!" by Tiffany Christensen. I think you will relate to Tiffany and it has such wonderful guidance in it.
 
 I hope you can continue to find the joy in life that wills you to keep fighting. Your gift of new lungs/liver will come, but you must remain strong, both mentally and physically! You can do it! There are many of us doing it everyday, and I know how you feel! It's funny....I am more scared of losing my loved ones, family and friends than I am of dying myself...but I have to think of how my loved ones feel about me and they want me to stick around for a long time!
 
 XO!

TestifyToLove · Oct 19, 2011

Incomudrox, no one is saying you don't have a right to fight for your life. No one is saying your choice to fight should be disrespected. By the same token, someone else's decision to not fight should also be respected.

OP, I don't think anyone can truly know the answer to this for you. Right now, we deliberately withold this information from Micah. Myself and his SpEd teacher strongly feel if he knows he's dying, he'll immediately stop fighting and we don't feel its time to let him stop fighting yet. The day will come when it is time to let him let go.

While every person must die, and while I certainly cannot know the experience of waiting for my own death, I stand daily in the battle of looking at the death of my 9 year old, with the cognitive abilities of a 3 year old. Each person has their own comfort level. I personally believe there is no shame in reaching a point when you know you have reached your level. If you think you haven't, then fight, find another way to carry on and try again. If you have, ask for a hospice consult. Hospice will do far more for helping prepare individuals and families for what comes and do so with dignity than any other entity you could ask for at this point. If you feel you are ready to let go, then ask for Hospice and they will hold your hand down that path.

TestifyToLove · Oct 19, 2011

Incomudrox, no one is saying you don't have a right to fight for your life. No one is saying your choice to fight should be disrespected. By the same token, someone else's decision to not fight should also be respected.

OP, I don't think anyone can truly know the answer to this for you. Right now, we deliberately withold this information from Micah. Myself and his SpEd teacher strongly feel if he knows he's dying, he'll immediately stop fighting and we don't feel its time to let him stop fighting yet. The day will come when it is time to let him let go.

While every person must die, and while I certainly cannot know the experience of waiting for my own death, I stand daily in the battle of looking at the death of my 9 year old, with the cognitive abilities of a 3 year old. Each person has their own comfort level. I personally believe there is no shame in reaching a point when you know you have reached your level. If you think you haven't, then fight, find another way to carry on and try again. If you have, ask for a hospice consult. Hospice will do far more for helping prepare individuals and families for what comes and do so with dignity than any other entity you could ask for at this point. If you feel you are ready to let go, then ask for Hospice and they will hold your hand down that path.

TestifyToLove · Oct 19, 2011

Incomudrox, no one is saying you don't have a right to fight for your life. No one is saying your choice to fight should be disrespected. By the same token, someone else's decision to not fight should also be respected.
 
 OP, I don't think anyone can truly know the answer to this for you. Right now, we deliberately withold this information from Micah. Myself and his SpEd teacher strongly feel if he knows he's dying, he'll immediately stop fighting and we don't feel its time to let him stop fighting yet. The day will come when it is time to let him let go.
 
 While every person must die, and while I certainly cannot know the experience of waiting for my own death, I stand daily in the battle of looking at the death of my 9 year old, with the cognitive abilities of a 3 year old. Each person has their own comfort level. I personally believe there is no shame in reaching a point when you know you have reached your level. If you think you haven't, then fight, find another way to carry on and try again. If you have, ask for a hospice consult. Hospice will do far more for helping prepare individuals and families for what comes and do so with dignity than any other entity you could ask for at this point. If you feel you are ready to let go, then ask for Hospice and they will hold your hand down that path.

windex125 · Oct 19, 2011

I didn't know that a thread can be pulled? learn something new every day.... I have been ready for a long time I made sure I had a DNR in place. But I still take my meds, do my treatments, and wait?. I am tried.fustrated,pissed off,depressed,feel cheated,angry but I wait... cause I guess it's not my time yet. I understand Randomgirls post 100% my family and friends do not understand my true feelings I keep them to myself I share here cause well no one knows me it's a safe place to voice my true feelings I was always the postive one, everyone brings me their problems. I am tired of it all, so why do I continue to take care of myself? Pat-56/CF and a lot of other stuff

windex125 · Oct 19, 2011

I didn't know that a thread can be pulled? learn something new every day.... I have been ready for a long time I made sure I had a DNR in place. But I still take my meds, do my treatments, and wait?. I am tried.fustrated,pissed off,depressed,feel cheated,angry but I wait... cause I guess it's not my time yet. I understand Randomgirls post 100% my family and friends do not understand my true feelings I keep them to myself I share here cause well no one knows me it's a safe place to voice my true feelings I was always the postive one, everyone brings me their problems. I am tired of it all, so why do I continue to take care of myself? Pat-56/CF and a lot of other stuff

windex125 · Oct 19, 2011

I didn't know that a thread can be pulled? learn something new every day.... I have been ready for a long time I made sure I had a DNR in place. But I still take my meds, do my treatments, and wait?. I am tried.fustrated,pissed off,depressed,feel cheated,angry but I wait... cause I guess it's not my time yet. I understand Randomgirls post 100% my family and friends do not understand my true feelings I keep them to myself I share here cause well no one knows me it's a safe place to voice my true feelings I was always the postive one, everyone brings me their problems. I am tired of it all, so why do I continue to take care of myself? Pat-56/CF and a lot of other stuff

When is it time?

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