When to say when?

[CFkitty]

Over the past few years, I have developed additional complications from my CF, in addition to the usual stuff. I am very symptomatic from various conditions. I have several things going on that every day now, I am feeling cruddy.

I try so hard to be positive and keep my mind strong, but I am finally realizing that my mind can't make pain and discomfort go away. I was dx'd with chronic pancreatitis a few years ago, but the past year has been especially hard.

Over the fall of last year, I developed a chronic kidney condition, then got "CF sick". I was sick from Nov to March, went on IVs, got a DVT, spent about 6 months recovering from the exacerbation/hospitalization/DVT, developed complications due to sinus issues, then had endoscopic sinus surgery (five procedures) about 5 weeks ago. Since last year, I have daily lung secretions - and several "hacking" sessions a day - something I never had before unless I was sick. So far, my sinuses are still healing and I still have stuffiness/pain there. My pancreatitis causes me daily pain; eating at all increases pain and nausea. I am on meds to manage both issues, but they make me tired. If I need to go anywhere, I cannot take certain meds because I have to drive/pay attention/etc.

It's not just my lungs - they are actually pretty stable in the low 70s - but the cumulative effects of other organ involvment.

I missed so much in the past year. I'm afraid to commitments anymore, because 99% of the time, I am too symptomatic to be able to enjoy going out to do much at all. I'm at the point where I think I need to make decisions. To stop pressuring myself. I experience so much anguish by making commitments and not being able to fulfill them; yet deciding upfront that I'm not going to do whatever is so difficult.

<b>So when do you let things go and accept your reality? Just getting to Doctor appointments is difficult enough. </b> I know that we all have our issues, but how do you manage expectations - to yourself and other people? I don't know if my overall health will ever get any better. So what now?

 

[CFkitty]

Over the past few years, I have developed additional complications from my CF, in addition to the usual stuff. I am very symptomatic from various conditions. I have several things going on that every day now, I am feeling cruddy.

I try so hard to be positive and keep my mind strong, but I am finally realizing that my mind can't make pain and discomfort go away. I was dx'd with chronic pancreatitis a few years ago, but the past year has been especially hard.

Over the fall of last year, I developed a chronic kidney condition, then got "CF sick". I was sick from Nov to March, went on IVs, got a DVT, spent about 6 months recovering from the exacerbation/hospitalization/DVT, developed complications due to sinus issues, then had endoscopic sinus surgery (five procedures) about 5 weeks ago. Since last year, I have daily lung secretions - and several "hacking" sessions a day - something I never had before unless I was sick. So far, my sinuses are still healing and I still have stuffiness/pain there. My pancreatitis causes me daily pain; eating at all increases pain and nausea. I am on meds to manage both issues, but they make me tired. If I need to go anywhere, I cannot take certain meds because I have to drive/pay attention/etc.

It's not just my lungs - they are actually pretty stable in the low 70s - but the cumulative effects of other organ involvment.

I missed so much in the past year. I'm afraid to commitments anymore, because 99% of the time, I am too symptomatic to be able to enjoy going out to do much at all. I'm at the point where I think I need to make decisions. To stop pressuring myself. I experience so much anguish by making commitments and not being able to fulfill them; yet deciding upfront that I'm not going to do whatever is so difficult.

<b>So when do you let things go and accept your reality? Just getting to Doctor appointments is difficult enough. </b> I know that we all have our issues, but how do you manage expectations - to yourself and other people? I don't know if my overall health will ever get any better. So what now?

 

[CFkitty]

Over the past few years, I have developed additional complications from my CF, in addition to the usual stuff. I am very symptomatic from various conditions. I have several things going on that every day now, I am feeling cruddy.

I try so hard to be positive and keep my mind strong, but I am finally realizing that my mind can't make pain and discomfort go away. I was dx'd with chronic pancreatitis a few years ago, but the past year has been especially hard.

Over the fall of last year, I developed a chronic kidney condition, then got "CF sick". I was sick from Nov to March, went on IVs, got a DVT, spent about 6 months recovering from the exacerbation/hospitalization/DVT, developed complications due to sinus issues, then had endoscopic sinus surgery (five procedures) about 5 weeks ago. Since last year, I have daily lung secretions - and several "hacking" sessions a day - something I never had before unless I was sick. So far, my sinuses are still healing and I still have stuffiness/pain there. My pancreatitis causes me daily pain; eating at all increases pain and nausea. I am on meds to manage both issues, but they make me tired. If I need to go anywhere, I cannot take certain meds because I have to drive/pay attention/etc.

It's not just my lungs - they are actually pretty stable in the low 70s - but the cumulative effects of other organ involvment.

I missed so much in the past year. I'm afraid to commitments anymore, because 99% of the time, I am too symptomatic to be able to enjoy going out to do much at all. I'm at the point where I think I need to make decisions. To stop pressuring myself. I experience so much anguish by making commitments and not being able to fulfill them; yet deciding upfront that I'm not going to do whatever is so difficult.

<b>So when do you let things go and accept your reality? Just getting to Doctor appointments is difficult enough. </b> I know that we all have our issues, but how do you manage expectations - to yourself and other people? I don't know if my overall health will ever get any better. So what now?

 

[CFkitty]

Over the past few years, I have developed additional complications from my CF, in addition to the usual stuff. I am very symptomatic from various conditions. I have several things going on that every day now, I am feeling cruddy.

I try so hard to be positive and keep my mind strong, but I am finally realizing that my mind can't make pain and discomfort go away. I was dx'd with chronic pancreatitis a few years ago, but the past year has been especially hard.

Over the fall of last year, I developed a chronic kidney condition, then got "CF sick". I was sick from Nov to March, went on IVs, got a DVT, spent about 6 months recovering from the exacerbation/hospitalization/DVT, developed complications due to sinus issues, then had endoscopic sinus surgery (five procedures) about 5 weeks ago. Since last year, I have daily lung secretions - and several "hacking" sessions a day - something I never had before unless I was sick. So far, my sinuses are still healing and I still have stuffiness/pain there. My pancreatitis causes me daily pain; eating at all increases pain and nausea. I am on meds to manage both issues, but they make me tired. If I need to go anywhere, I cannot take certain meds because I have to drive/pay attention/etc.

It's not just my lungs - they are actually pretty stable in the low 70s - but the cumulative effects of other organ involvment.

I missed so much in the past year. I'm afraid to commitments anymore, because 99% of the time, I am too symptomatic to be able to enjoy going out to do much at all. I'm at the point where I think I need to make decisions. To stop pressuring myself. I experience so much anguish by making commitments and not being able to fulfill them; yet deciding upfront that I'm not going to do whatever is so difficult.

<b>So when do you let things go and accept your reality? Just getting to Doctor appointments is difficult enough. </b> I know that we all have our issues, but how do you manage expectations - to yourself and other people? I don't know if my overall health will ever get any better. So what now?

 

[CFkitty]

Over the past few years, I have developed additional complications from my CF, in addition to the usual stuff. I am very symptomatic from various conditions. I have several things going on that every day now, I am feeling cruddy.
<br />
<br />I try so hard to be positive and keep my mind strong, but I am finally realizing that my mind can't make pain and discomfort go away. I was dx'd with chronic pancreatitis a few years ago, but the past year has been especially hard.
<br />
<br />Over the fall of last year, I developed a chronic kidney condition, then got "CF sick". I was sick from Nov to March, went on IVs, got a DVT, spent about 6 months recovering from the exacerbation/hospitalization/DVT, developed complications due to sinus issues, then had endoscopic sinus surgery (five procedures) about 5 weeks ago. Since last year, I have daily lung secretions - and several "hacking" sessions a day - something I never had before unless I was sick. So far, my sinuses are still healing and I still have stuffiness/pain there. My pancreatitis causes me daily pain; eating at all increases pain and nausea. I am on meds to manage both issues, but they make me tired. If I need to go anywhere, I cannot take certain meds because I have to drive/pay attention/etc.
<br />
<br />It's not just my lungs - they are actually pretty stable in the low 70s - but the cumulative effects of other organ involvment.
<br />
<br />I missed so much in the past year. I'm afraid to commitments anymore, because 99% of the time, I am too symptomatic to be able to enjoy going out to do much at all. I'm at the point where I think I need to make decisions. To stop pressuring myself. I experience so much anguish by making commitments and not being able to fulfill them; yet deciding upfront that I'm not going to do whatever is so difficult.
<br />
<br /><b>So when do you let things go and accept your reality? Just getting to Doctor appointments is difficult enough. </b> I know that we all have our issues, but how do you manage expectations - to yourself and other people? I don't know if my overall health will ever get any better. So what now?

 

[missT]

CFKitty, I too had Pancreatitis...I was in the hospital with gall stones for 28 days. They operated (unsuccesfully)to remove the stones. They finally took my gallbladder out when I was 26. I do undertand the pain...it was horrible! I had my lung collapse (fully) a few month ago and that hit me like a ton of bricks. I have a wonderful partner and I want to get married and start a family but there is always that nagging feeling of not being able to do it. My partner is very "normal" and I wonder if I am doing the right thing. We missed a wedding in July and almost one last Sat because my left lung hurt like hell. I really, really, feel for you. Somedays I hold on by a string. The only thing that gives me hope is a cure (or some form of it). I find myself wishing I were younger because I do believe its coming. My pft's are 47%. I work alllll the time, support myself, it is alot of pressure. Please hold on and only attend the functions that you can...I push myself...but that is what drives me. Please know that there are people who understand.

 

[missT]

CFKitty, I too had Pancreatitis...I was in the hospital with gall stones for 28 days. They operated (unsuccesfully)to remove the stones. They finally took my gallbladder out when I was 26. I do undertand the pain...it was horrible! I had my lung collapse (fully) a few month ago and that hit me like a ton of bricks. I have a wonderful partner and I want to get married and start a family but there is always that nagging feeling of not being able to do it. My partner is very "normal" and I wonder if I am doing the right thing. We missed a wedding in July and almost one last Sat because my left lung hurt like hell. I really, really, feel for you. Somedays I hold on by a string. The only thing that gives me hope is a cure (or some form of it). I find myself wishing I were younger because I do believe its coming. My pft's are 47%. I work alllll the time, support myself, it is alot of pressure. Please hold on and only attend the functions that you can...I push myself...but that is what drives me. Please know that there are people who understand.

 

[missT]

CFKitty, I too had Pancreatitis...I was in the hospital with gall stones for 28 days. They operated (unsuccesfully)to remove the stones. They finally took my gallbladder out when I was 26. I do undertand the pain...it was horrible! I had my lung collapse (fully) a few month ago and that hit me like a ton of bricks. I have a wonderful partner and I want to get married and start a family but there is always that nagging feeling of not being able to do it. My partner is very "normal" and I wonder if I am doing the right thing. We missed a wedding in July and almost one last Sat because my left lung hurt like hell. I really, really, feel for you. Somedays I hold on by a string. The only thing that gives me hope is a cure (or some form of it). I find myself wishing I were younger because I do believe its coming. My pft's are 47%. I work alllll the time, support myself, it is alot of pressure. Please hold on and only attend the functions that you can...I push myself...but that is what drives me. Please know that there are people who understand.

 

[missT]

CFKitty, I too had Pancreatitis...I was in the hospital with gall stones for 28 days. They operated (unsuccesfully)to remove the stones. They finally took my gallbladder out when I was 26. I do undertand the pain...it was horrible! I had my lung collapse (fully) a few month ago and that hit me like a ton of bricks. I have a wonderful partner and I want to get married and start a family but there is always that nagging feeling of not being able to do it. My partner is very "normal" and I wonder if I am doing the right thing. We missed a wedding in July and almost one last Sat because my left lung hurt like hell. I really, really, feel for you. Somedays I hold on by a string. The only thing that gives me hope is a cure (or some form of it). I find myself wishing I were younger because I do believe its coming. My pft's are 47%. I work alllll the time, support myself, it is alot of pressure. Please hold on and only attend the functions that you can...I push myself...but that is what drives me. Please know that there are people who understand.

 

[missT]

CFKitty, I too had Pancreatitis...I was in the hospital with gall stones for 28 days. They operated (unsuccesfully)to remove the stones. They finally took my gallbladder out when I was 26. I do undertand the pain...it was horrible! I had my lung collapse (fully) a few month ago and that hit me like a ton of bricks. I have a wonderful partner and I want to get married and start a family but there is always that nagging feeling of not being able to do it. My partner is very "normal" and I wonder if I am doing the right thing. We missed a wedding in July and almost one last Sat because my left lung hurt like hell. I really, really, feel for you. Somedays I hold on by a string. The only thing that gives me hope is a cure (or some form of it). I find myself wishing I were younger because I do believe its coming. My pft's are 47%. I work alllll the time, support myself, it is alot of pressure. Please hold on and only attend the functions that you can...I push myself...but that is what drives me. Please know that there are people who understand.

 

[melx]

I totally know your pain. I've had all that other organ involvement issue too. And, I too have agonized over the responsibility / commitments thing this year. It is a struggle figuring out how to let go, letting go, and then letting people know that I had to let go. It is emotionally and spiritually draining. It has also been an eye opener. I now realize that my life, though structured by a routine to try to optimize health, has to have a whole lot of impromptu. So I may schedule,RSVP or try to be somewhere but I always preface by admitting to myself it is not absolute; and then informing whoever is expecting me to be aware that I may not be able to be there. It is very very difficult to go from being super responsible to being impromptu. But, I'm also learning to appreciate this stage in my life. It is limiting in some ways but at the same time so freeing in others. It demands a lot of flexibility. So much so, that I often feel like a rubber band - but a really really durable strong one! That has helped me to cope.
My spiritual beliefs are also a huge mechanism for coping.

 

[melx]

I totally know your pain. I've had all that other organ involvement issue too. And, I too have agonized over the responsibility / commitments thing this year. It is a struggle figuring out how to let go, letting go, and then letting people know that I had to let go. It is emotionally and spiritually draining. It has also been an eye opener. I now realize that my life, though structured by a routine to try to optimize health, has to have a whole lot of impromptu. So I may schedule,RSVP or try to be somewhere but I always preface by admitting to myself it is not absolute; and then informing whoever is expecting me to be aware that I may not be able to be there. It is very very difficult to go from being super responsible to being impromptu. But, I'm also learning to appreciate this stage in my life. It is limiting in some ways but at the same time so freeing in others. It demands a lot of flexibility. So much so, that I often feel like a rubber band - but a really really durable strong one! That has helped me to cope.
My spiritual beliefs are also a huge mechanism for coping.

 

[melx]

I totally know your pain. I've had all that other organ involvement issue too. And, I too have agonized over the responsibility / commitments thing this year. It is a struggle figuring out how to let go, letting go, and then letting people know that I had to let go. It is emotionally and spiritually draining. It has also been an eye opener. I now realize that my life, though structured by a routine to try to optimize health, has to have a whole lot of impromptu. So I may schedule,RSVP or try to be somewhere but I always preface by admitting to myself it is not absolute; and then informing whoever is expecting me to be aware that I may not be able to be there. It is very very difficult to go from being super responsible to being impromptu. But, I'm also learning to appreciate this stage in my life. It is limiting in some ways but at the same time so freeing in others. It demands a lot of flexibility. So much so, that I often feel like a rubber band - but a really really durable strong one! That has helped me to cope.
My spiritual beliefs are also a huge mechanism for coping.

 

[melx]

I totally know your pain. I've had all that other organ involvement issue too. And, I too have agonized over the responsibility / commitments thing this year. It is a struggle figuring out how to let go, letting go, and then letting people know that I had to let go. It is emotionally and spiritually draining. It has also been an eye opener. I now realize that my life, though structured by a routine to try to optimize health, has to have a whole lot of impromptu. So I may schedule,RSVP or try to be somewhere but I always preface by admitting to myself it is not absolute; and then informing whoever is expecting me to be aware that I may not be able to be there. It is very very difficult to go from being super responsible to being impromptu. But, I'm also learning to appreciate this stage in my life. It is limiting in some ways but at the same time so freeing in others. It demands a lot of flexibility. So much so, that I often feel like a rubber band - but a really really durable strong one! That has helped me to cope.
My spiritual beliefs are also a huge mechanism for coping.

 

[melx]

I totally know your pain. I've had all that other organ involvement issue too. And, I too have agonized over the responsibility / commitments thing this year. It is a struggle figuring out how to let go, letting go, and then letting people know that I had to let go. It is emotionally and spiritually draining. It has also been an eye opener. I now realize that my life, though structured by a routine to try to optimize health, has to have a whole lot of impromptu. So I may schedule,RSVP or try to be somewhere but I always preface by admitting to myself it is not absolute; and then informing whoever is expecting me to be aware that I may not be able to be there. It is very very difficult to go from being super responsible to being impromptu. But, I'm also learning to appreciate this stage in my life. It is limiting in some ways but at the same time so freeing in others. It demands a lot of flexibility. So much so, that I often feel like a rubber band - but a really really durable strong one! That has helped me to cope.
<br />My spiritual beliefs are also a huge mechanism for coping.

 

[CFkitty]

Misst and Melx - thank you for the advice and commiseration!

It does help to know that other people understand these feelings. CF - or any chronic condition - can at times be very isolating. I also rely on my faith to get me through, moreso in recent years, and have found myself counting my blessings and asking for strength and patience now, versus asking for relief from what ails me. If I can't control my body the ways that I want to, I CAN control how I respond or react.

Thank you both again.

 

[CFkitty]

Misst and Melx - thank you for the advice and commiseration!

It does help to know that other people understand these feelings. CF - or any chronic condition - can at times be very isolating. I also rely on my faith to get me through, moreso in recent years, and have found myself counting my blessings and asking for strength and patience now, versus asking for relief from what ails me. If I can't control my body the ways that I want to, I CAN control how I respond or react.

Thank you both again.

 

[CFkitty]

Misst and Melx - thank you for the advice and commiseration!

It does help to know that other people understand these feelings. CF - or any chronic condition - can at times be very isolating. I also rely on my faith to get me through, moreso in recent years, and have found myself counting my blessings and asking for strength and patience now, versus asking for relief from what ails me. If I can't control my body the ways that I want to, I CAN control how I respond or react.

Thank you both again.

 

[CFkitty]

Misst and Melx - thank you for the advice and commiseration!

It does help to know that other people understand these feelings. CF - or any chronic condition - can at times be very isolating. I also rely on my faith to get me through, moreso in recent years, and have found myself counting my blessings and asking for strength and patience now, versus asking for relief from what ails me. If I can't control my body the ways that I want to, I CAN control how I respond or react.

Thank you both again.

 

[CFkitty]

Misst and Melx - thank you for the advice and commiseration!
<br />
<br />It does help to know that other people understand these feelings. CF - or any chronic condition - can at times be very isolating. I also rely on my faith to get me through, moreso in recent years, and have found myself counting my blessings and asking for strength and patience now, versus asking for relief from what ails me. If I can't control my body the ways that I want to, I CAN control how I respond or react.
<br />
<br />Thank you both again.