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how do you keep from

S

Skye

New member
I know all the logic with this question; but, sometimes my mind doesn't want to be logical. How do you keep from second guessing everything you do? When you have a "less than desirable" FEV1 you feel like every decision you make and every move you make is so dang important. Here are some of my crazy thoughts: oh if only i hadn't gone on that trip last summer, if only we didn't live in an older home and do slight remodeling, if only I had known more at an earlier age, if only my parents had educated me more, if only i had this antibiotic with that one during my last round. The list goes on and on. I don't know how I can be expected to play doctor and patient both. It just seems like there are no perfect answers with this disease and yet we still have to make really hard decisions. If anyone has some words of wisdom, please help. This can't be healthy for me to go through this cycle of thinking every time my FEV1 is not where I think it should be. I was never this way before. Really just in the last 2 years. I know this thinking is not logical in relation to the disease. I would really just like some of the positive things you all think about.
 
S

Skye

New member
I know all the logic with this question; but, sometimes my mind doesn't want to be logical. How do you keep from second guessing everything you do? When you have a "less than desirable" FEV1 you feel like every decision you make and every move you make is so dang important. Here are some of my crazy thoughts: oh if only i hadn't gone on that trip last summer, if only we didn't live in an older home and do slight remodeling, if only I had known more at an earlier age, if only my parents had educated me more, if only i had this antibiotic with that one during my last round. The list goes on and on. I don't know how I can be expected to play doctor and patient both. It just seems like there are no perfect answers with this disease and yet we still have to make really hard decisions. If anyone has some words of wisdom, please help. This can't be healthy for me to go through this cycle of thinking every time my FEV1 is not where I think it should be. I was never this way before. Really just in the last 2 years. I know this thinking is not logical in relation to the disease. I would really just like some of the positive things you all think about.
 
S

Skye

New member
I know all the logic with this question; but, sometimes my mind doesn't want to be logical. How do you keep from second guessing everything you do? When you have a "less than desirable" FEV1 you feel like every decision you make and every move you make is so dang important. Here are some of my crazy thoughts: oh if only i hadn't gone on that trip last summer, if only we didn't live in an older home and do slight remodeling, if only I had known more at an earlier age, if only my parents had educated me more, if only i had this antibiotic with that one during my last round. The list goes on and on. I don't know how I can be expected to play doctor and patient both. It just seems like there are no perfect answers with this disease and yet we still have to make really hard decisions. If anyone has some words of wisdom, please help. This can't be healthy for me to go through this cycle of thinking every time my FEV1 is not where I think it should be. I was never this way before. Really just in the last 2 years. I know this thinking is not logical in relation to the disease. I would really just like some of the positive things you all think about.
 
S

Skye

New member
I know all the logic with this question; but, sometimes my mind doesn't want to be logical. How do you keep from second guessing everything you do? When you have a "less than desirable" FEV1 you feel like every decision you make and every move you make is so dang important. Here are some of my crazy thoughts: oh if only i hadn't gone on that trip last summer, if only we didn't live in an older home and do slight remodeling, if only I had known more at an earlier age, if only my parents had educated me more, if only i had this antibiotic with that one during my last round. The list goes on and on. I don't know how I can be expected to play doctor and patient both. It just seems like there are no perfect answers with this disease and yet we still have to make really hard decisions. If anyone has some words of wisdom, please help. This can't be healthy for me to go through this cycle of thinking every time my FEV1 is not where I think it should be. I was never this way before. Really just in the last 2 years. I know this thinking is not logical in relation to the disease. I would really just like some of the positive things you all think about.
 
S

Skye

New member
I know all the logic with this question; but, sometimes my mind doesn't want to be logical. How do you keep from second guessing everything you do? When you have a "less than desirable" FEV1 you feel like every decision you make and every move you make is so dang important. Here are some of my crazy thoughts: oh if only i hadn't gone on that trip last summer, if only we didn't live in an older home and do slight remodeling, if only I had known more at an earlier age, if only my parents had educated me more, if only i had this antibiotic with that one during my last round. The list goes on and on. I don't know how I can be expected to play doctor and patient both. It just seems like there are no perfect answers with this disease and yet we still have to make really hard decisions. If anyone has some words of wisdom, please help. This can't be healthy for me to go through this cycle of thinking every time my FEV1 is not where I think it should be. I was never this way before. Really just in the last 2 years. I know this thinking is not logical in relation to the disease. I would really just like some of the positive things you all think about.
 
S

Scottius

New member
Maybe you could turn the question around: what have I been doing that has been successful? To live to 40 is a remarkable achievement, and the kind of things you listed are just part of living a normal life. Just think of the things you *didn't* do that could have put you in a worse state.

But I completely can relate to your concern; I think about my noncompliance when I was younger, hanging out in smoke-filled bars, and other less-than-ideal behavior. But there is nothing I can do about the past now. Not to say that I don't get depressed about my health, as I do. But life is full of an infinity of choices, and beating yourself up over some fairly innocent ones (or basically ones that were out of your control in some instances) will only do harm to your present being.

Now if I could only live by those words myself. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

Scottius

New member
Maybe you could turn the question around: what have I been doing that has been successful? To live to 40 is a remarkable achievement, and the kind of things you listed are just part of living a normal life. Just think of the things you *didn't* do that could have put you in a worse state.

But I completely can relate to your concern; I think about my noncompliance when I was younger, hanging out in smoke-filled bars, and other less-than-ideal behavior. But there is nothing I can do about the past now. Not to say that I don't get depressed about my health, as I do. But life is full of an infinity of choices, and beating yourself up over some fairly innocent ones (or basically ones that were out of your control in some instances) will only do harm to your present being.

Now if I could only live by those words myself. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

Scottius

New member
Maybe you could turn the question around: what have I been doing that has been successful? To live to 40 is a remarkable achievement, and the kind of things you listed are just part of living a normal life. Just think of the things you *didn't* do that could have put you in a worse state.

But I completely can relate to your concern; I think about my noncompliance when I was younger, hanging out in smoke-filled bars, and other less-than-ideal behavior. But there is nothing I can do about the past now. Not to say that I don't get depressed about my health, as I do. But life is full of an infinity of choices, and beating yourself up over some fairly innocent ones (or basically ones that were out of your control in some instances) will only do harm to your present being.

Now if I could only live by those words myself. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

Scottius

New member
Maybe you could turn the question around: what have I been doing that has been successful? To live to 40 is a remarkable achievement, and the kind of things you listed are just part of living a normal life. Just think of the things you *didn't* do that could have put you in a worse state.

But I completely can relate to your concern; I think about my noncompliance when I was younger, hanging out in smoke-filled bars, and other less-than-ideal behavior. But there is nothing I can do about the past now. Not to say that I don't get depressed about my health, as I do. But life is full of an infinity of choices, and beating yourself up over some fairly innocent ones (or basically ones that were out of your control in some instances) will only do harm to your present being.

Now if I could only live by those words myself. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
S

Scottius

New member
Maybe you could turn the question around: what have I been doing that has been successful? To live to 40 is a remarkable achievement, and the kind of things you listed are just part of living a normal life. Just think of the things you *didn't* do that could have put you in a worse state.
<br />
<br />But I completely can relate to your concern; I think about my noncompliance when I was younger, hanging out in smoke-filled bars, and other less-than-ideal behavior. But there is nothing I can do about the past now. Not to say that I don't get depressed about my health, as I do. But life is full of an infinity of choices, and beating yourself up over some fairly innocent ones (or basically ones that were out of your control in some instances) will only do harm to your present being.
<br />
<br />Now if I could only live by those words myself. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
 
F

Faust

New member
From what I gathered from others in the earlier thread stating giving your life over to Jesus, and what I know about Christianity, don't worry about it because it's "God's will".


As far as I go though (I'm not a Christian), I do what I can, do what makes sense, research stuff, never be non compliant with my care, keep a positive attitude, and hope for the best. From a non religious perspective, that's all you can do. Second guessing yourself after decisions will drive you insane.
 
F

Faust

New member
From what I gathered from others in the earlier thread stating giving your life over to Jesus, and what I know about Christianity, don't worry about it because it's "God's will".


As far as I go though (I'm not a Christian), I do what I can, do what makes sense, research stuff, never be non compliant with my care, keep a positive attitude, and hope for the best. From a non religious perspective, that's all you can do. Second guessing yourself after decisions will drive you insane.
 
F

Faust

New member
From what I gathered from others in the earlier thread stating giving your life over to Jesus, and what I know about Christianity, don't worry about it because it's "God's will".


As far as I go though (I'm not a Christian), I do what I can, do what makes sense, research stuff, never be non compliant with my care, keep a positive attitude, and hope for the best. From a non religious perspective, that's all you can do. Second guessing yourself after decisions will drive you insane.
 
F

Faust

New member
From what I gathered from others in the earlier thread stating giving your life over to Jesus, and what I know about Christianity, don't worry about it because it's "God's will".


As far as I go though (I'm not a Christian), I do what I can, do what makes sense, research stuff, never be non compliant with my care, keep a positive attitude, and hope for the best. From a non religious perspective, that's all you can do. Second guessing yourself after decisions will drive you insane.
 
F

Faust

New member
From what I gathered from others in the earlier thread stating giving your life over to Jesus, and what I know about Christianity, don't worry about it because it's "God's will".
<br />
<br />
<br />As far as I go though (I'm not a Christian), I do what I can, do what makes sense, research stuff, never be non compliant with my care, keep a positive attitude, and hope for the best. From a non religious perspective, that's all you can do. Second guessing yourself after decisions will drive you insane.
<br />
<br />
 
N

NYCLawGirl

New member
Skye,

I have the exact same problem. I'm compliant in all my healthcare, exercise daily, am on tons of meds, and even my doctor tells me that I am "doing everything right", but I still have a terrible time with PFTs. I can't stop thinking that there's something I must be doing wrong, or something that would magically change the numbers. Here's what I've determined through years of wondering and worrying:

1) I am not a number; I am person. My PFTs don't define me, and sometimes they don't even accurately reflect how I feel at any given time. So while they are important, I am certainly not going to let them define my life.

2) There are probably things I could be doing differently that might possibly change my health. The best example of this is work - I work full time at a big wall st. law firm, I pushed my body through an Ivy League law school, and I'm tough on myself. I make conscious, adult decisions about how to balance these choices with my need to be responsible about my healthcare, and I trust myself. If these choices do lower my numbers a bit, I am not going to feel guilty about them. They are necessary for my mental well-being.

3) CF affects every single patient differently. Just as it's silly to claim that all CFers in their 20s and 30s are teetering on the edge, it's equally silly to try and claim that all CFers can control their disease by being compliant patients. My Cf is not my fault, your CF is not your fault, and as much as it pains a control freak like myself to admit it, there are some things in life that are out of our hands. I will control what I can, and I try not to punish myself for not being able to change every outcome.

4) A positive attitude is an amazing tool, but sometimes everyone needs to be raw in the face of something scary.

5) I have made past mistakes. We all have, and every person does. I try not to punish myself for them too much in the present.

I'm not particularly religious either, but whenever I get a bad infection despite all my best efforts I remember the serenity prayer. It pretty much perfectly describes my personal struggle with this disease: Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Hugs,
Piper
 
N

NYCLawGirl

New member
Skye,

I have the exact same problem. I'm compliant in all my healthcare, exercise daily, am on tons of meds, and even my doctor tells me that I am "doing everything right", but I still have a terrible time with PFTs. I can't stop thinking that there's something I must be doing wrong, or something that would magically change the numbers. Here's what I've determined through years of wondering and worrying:

1) I am not a number; I am person. My PFTs don't define me, and sometimes they don't even accurately reflect how I feel at any given time. So while they are important, I am certainly not going to let them define my life.

2) There are probably things I could be doing differently that might possibly change my health. The best example of this is work - I work full time at a big wall st. law firm, I pushed my body through an Ivy League law school, and I'm tough on myself. I make conscious, adult decisions about how to balance these choices with my need to be responsible about my healthcare, and I trust myself. If these choices do lower my numbers a bit, I am not going to feel guilty about them. They are necessary for my mental well-being.

3) CF affects every single patient differently. Just as it's silly to claim that all CFers in their 20s and 30s are teetering on the edge, it's equally silly to try and claim that all CFers can control their disease by being compliant patients. My Cf is not my fault, your CF is not your fault, and as much as it pains a control freak like myself to admit it, there are some things in life that are out of our hands. I will control what I can, and I try not to punish myself for not being able to change every outcome.

4) A positive attitude is an amazing tool, but sometimes everyone needs to be raw in the face of something scary.

5) I have made past mistakes. We all have, and every person does. I try not to punish myself for them too much in the present.

I'm not particularly religious either, but whenever I get a bad infection despite all my best efforts I remember the serenity prayer. It pretty much perfectly describes my personal struggle with this disease: Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Hugs,
Piper
 
N

NYCLawGirl

New member
Skye,

I have the exact same problem. I'm compliant in all my healthcare, exercise daily, am on tons of meds, and even my doctor tells me that I am "doing everything right", but I still have a terrible time with PFTs. I can't stop thinking that there's something I must be doing wrong, or something that would magically change the numbers. Here's what I've determined through years of wondering and worrying:

1) I am not a number; I am person. My PFTs don't define me, and sometimes they don't even accurately reflect how I feel at any given time. So while they are important, I am certainly not going to let them define my life.

2) There are probably things I could be doing differently that might possibly change my health. The best example of this is work - I work full time at a big wall st. law firm, I pushed my body through an Ivy League law school, and I'm tough on myself. I make conscious, adult decisions about how to balance these choices with my need to be responsible about my healthcare, and I trust myself. If these choices do lower my numbers a bit, I am not going to feel guilty about them. They are necessary for my mental well-being.

3) CF affects every single patient differently. Just as it's silly to claim that all CFers in their 20s and 30s are teetering on the edge, it's equally silly to try and claim that all CFers can control their disease by being compliant patients. My Cf is not my fault, your CF is not your fault, and as much as it pains a control freak like myself to admit it, there are some things in life that are out of our hands. I will control what I can, and I try not to punish myself for not being able to change every outcome.

4) A positive attitude is an amazing tool, but sometimes everyone needs to be raw in the face of something scary.

5) I have made past mistakes. We all have, and every person does. I try not to punish myself for them too much in the present.

I'm not particularly religious either, but whenever I get a bad infection despite all my best efforts I remember the serenity prayer. It pretty much perfectly describes my personal struggle with this disease: Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Hugs,
Piper
 
N

NYCLawGirl

New member
Skye,

I have the exact same problem. I'm compliant in all my healthcare, exercise daily, am on tons of meds, and even my doctor tells me that I am "doing everything right", but I still have a terrible time with PFTs. I can't stop thinking that there's something I must be doing wrong, or something that would magically change the numbers. Here's what I've determined through years of wondering and worrying:

1) I am not a number; I am person. My PFTs don't define me, and sometimes they don't even accurately reflect how I feel at any given time. So while they are important, I am certainly not going to let them define my life.

2) There are probably things I could be doing differently that might possibly change my health. The best example of this is work - I work full time at a big wall st. law firm, I pushed my body through an Ivy League law school, and I'm tough on myself. I make conscious, adult decisions about how to balance these choices with my need to be responsible about my healthcare, and I trust myself. If these choices do lower my numbers a bit, I am not going to feel guilty about them. They are necessary for my mental well-being.

3) CF affects every single patient differently. Just as it's silly to claim that all CFers in their 20s and 30s are teetering on the edge, it's equally silly to try and claim that all CFers can control their disease by being compliant patients. My Cf is not my fault, your CF is not your fault, and as much as it pains a control freak like myself to admit it, there are some things in life that are out of our hands. I will control what I can, and I try not to punish myself for not being able to change every outcome.

4) A positive attitude is an amazing tool, but sometimes everyone needs to be raw in the face of something scary.

5) I have made past mistakes. We all have, and every person does. I try not to punish myself for them too much in the present.

I'm not particularly religious either, but whenever I get a bad infection despite all my best efforts I remember the serenity prayer. It pretty much perfectly describes my personal struggle with this disease: Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Hugs,
Piper
 
N

NYCLawGirl

New member
Skye,
<br />
<br />I have the exact same problem. I'm compliant in all my healthcare, exercise daily, am on tons of meds, and even my doctor tells me that I am "doing everything right", but I still have a terrible time with PFTs. I can't stop thinking that there's something I must be doing wrong, or something that would magically change the numbers. Here's what I've determined through years of wondering and worrying:
<br />
<br />1) I am not a number; I am person. My PFTs don't define me, and sometimes they don't even accurately reflect how I feel at any given time. So while they are important, I am certainly not going to let them define my life.
<br />
<br />2) There are probably things I could be doing differently that might possibly change my health. The best example of this is work - I work full time at a big wall st. law firm, I pushed my body through an Ivy League law school, and I'm tough on myself. I make conscious, adult decisions about how to balance these choices with my need to be responsible about my healthcare, and I trust myself. If these choices do lower my numbers a bit, I am not going to feel guilty about them. They are necessary for my mental well-being.
<br />
<br />3) CF affects every single patient differently. Just as it's silly to claim that all CFers in their 20s and 30s are teetering on the edge, it's equally silly to try and claim that all CFers can control their disease by being compliant patients. My Cf is not my fault, your CF is not your fault, and as much as it pains a control freak like myself to admit it, there are some things in life that are out of our hands. I will control what I can, and I try not to punish myself for not being able to change every outcome.
<br />
<br />4) A positive attitude is an amazing tool, but sometimes everyone needs to be raw in the face of something scary.
<br />
<br />5) I have made past mistakes. We all have, and every person does. I try not to punish myself for them too much in the present.
<br />
<br />I'm not particularly religious either, but whenever I get a bad infection despite all my best efforts I remember the serenity prayer. It pretty much perfectly describes my personal struggle with this disease: Lord grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
<br />
<br />Hugs,
<br />Piper
 
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