Frustrated with Cf

[windex125]

I know I've posted this before, and although I do not remember anyone agreeing with me on this. I have used anti-depressants over the past 8yrs . They have helped me over the rocky times. They are not a happy pill in a bottle, by any means. I also have not stayed on longer than 7-8mts. Then I take a break, it just helps me personally deal with all the fustration of doing everything I can to stay well, and still get sick. All the meds, the treatments, the exhausted feelings but most of all the hacking and the amount of phelem that comes out of me is quite unbeleivable, it truly discusts me at times. Beleive it or not I really try to keep a postive attitude as much as I can, and I have become the therapist to many friends, a job I never wanted. But all I am suggestioing is that it has helped me in the past. It's not a bad thing. Also talking without meds is just as good as long as the person truly understands CF. I wish you all the best, we work very hard. I wish we got paid for all the hard work. Pat/55-CF

 

[entropy]

Pat, you're a very wise person. I always enjoy reading your posts. You bring to this forum the wisdom that comes with being alive for many years. There aren't many people with CF that live as long as you, and even less on this forum. I for one am glad you're a part of this community!

 

[entropy]

Pat, you're a very wise person. I always enjoy reading your posts. You bring to this forum the wisdom that comes with being alive for many years. There aren't many people with CF that live as long as you, and even less on this forum. I for one am glad you're a part of this community!

 

[entropy]

Pat, you're a very wise person. I always enjoy reading your posts. You bring to this forum the wisdom that comes with being alive for many years. There aren't many people with CF that live as long as you, and even less on this forum. I for one am glad you're a part of this community!

 

[windex125]

Thank you Entropy, I find you witty,smart,fun,and you crack me up just when I need it. You are a asset as well. I thank you for your kind words.Pat/CF-55

 

[windex125]

Thank you Entropy, I find you witty,smart,fun,and you crack me up just when I need it. You are a asset as well. I thank you for your kind words.Pat/CF-55

 

[windex125]

Thank you Entropy, I find you witty,smart,fun,and you crack me up just when I need it. You are a asset as well. I thank you for your kind words.Pat/CF-55

 

[mamaScarlett]

I've been very frustrated and down bc of my Cf too lately, but I'm really trying to work on it everyday.
Being pregnant is a much worked for miracle and a dream come true. But I've been feeling down basically bc I'm so tired-like, there should be a new word for how tired I am. I have to work 10 times harder than any other pregnant woman to be healthy, which also makes me tired. I can't get anything done, I have to hibernate all winter so I don't catch anything serious. I feel like I can't relax and enjoy the pregnancy I've worked for bc I'm worried about getting sick, catching something, worried about after the baby, being able to breastfeed, etc on and on. Even though I am relatively healthy-the worrying is always there. I've just been having its-not-fair moments. Its not fair that I have to feel this way, and that things I want could be taken away from me.
I've found that if I just let myself have the cry it passes and I can go on with my day, and see things more rationally.

What I am grateful for, even though this sounds obvious, is that I have access to all these medicines and treatments. I'll never forget years back on this site hearing from patients from Lebanon and Iraq that didn't even have access to enzymes!! What kind of life can these poor people hope for? Every morning I cringe as I sit down and do my annoying chest pt-but I still always see it as a blessing that I can even do these meds! I'm very thankful for them.
Living with Cf has given me insight into what people deal with. Its given me empathy, compassion. I'm much less quick to judge people for things that they say, or how they seem, because I always think of what they may be dealing with in life. I'm really happy that I have that in me, and I think its a lesson I learned much sooner in life that most other people, bc I had to live with cf. Its the #1 quality I hope to pass on to my children.

 

[mamaScarlett]

I've been very frustrated and down bc of my Cf too lately, but I'm really trying to work on it everyday.
Being pregnant is a much worked for miracle and a dream come true. But I've been feeling down basically bc I'm so tired-like, there should be a new word for how tired I am. I have to work 10 times harder than any other pregnant woman to be healthy, which also makes me tired. I can't get anything done, I have to hibernate all winter so I don't catch anything serious. I feel like I can't relax and enjoy the pregnancy I've worked for bc I'm worried about getting sick, catching something, worried about after the baby, being able to breastfeed, etc on and on. Even though I am relatively healthy-the worrying is always there. I've just been having its-not-fair moments. Its not fair that I have to feel this way, and that things I want could be taken away from me.
I've found that if I just let myself have the cry it passes and I can go on with my day, and see things more rationally.

What I am grateful for, even though this sounds obvious, is that I have access to all these medicines and treatments. I'll never forget years back on this site hearing from patients from Lebanon and Iraq that didn't even have access to enzymes!! What kind of life can these poor people hope for? Every morning I cringe as I sit down and do my annoying chest pt-but I still always see it as a blessing that I can even do these meds! I'm very thankful for them.
Living with Cf has given me insight into what people deal with. Its given me empathy, compassion. I'm much less quick to judge people for things that they say, or how they seem, because I always think of what they may be dealing with in life. I'm really happy that I have that in me, and I think its a lesson I learned much sooner in life that most other people, bc I had to live with cf. Its the #1 quality I hope to pass on to my children.

 

[mamaScarlett]

I've been very frustrated and down bc of my Cf too lately, but I'm really trying to work on it everyday.
<br />Being pregnant is a much worked for miracle and a dream come true. But I've been feeling down basically bc I'm so tired-like, there should be a new word for how tired I am. I have to work 10 times harder than any other pregnant woman to be healthy, which also makes me tired. I can't get anything done, I have to hibernate all winter so I don't catch anything serious. I feel like I can't relax and enjoy the pregnancy I've worked for bc I'm worried about getting sick, catching something, worried about after the baby, being able to breastfeed, etc on and on. Even though I am relatively healthy-the worrying is always there. I've just been having its-not-fair moments. Its not fair that I have to feel this way, and that things I want could be taken away from me.
<br />I've found that if I just let myself have the cry it passes and I can go on with my day, and see things more rationally.
<br />
<br />What I am grateful for, even though this sounds obvious, is that I have access to all these medicines and treatments. I'll never forget years back on this site hearing from patients from Lebanon and Iraq that didn't even have access to enzymes!! What kind of life can these poor people hope for? Every morning I cringe as I sit down and do my annoying chest pt-but I still always see it as a blessing that I can even do these meds! I'm very thankful for them.
<br />Living with Cf has given me insight into what people deal with. Its given me empathy, compassion. I'm much less quick to judge people for things that they say, or how they seem, because I always think of what they may be dealing with in life. I'm really happy that I have that in me, and I think its a lesson I learned much sooner in life that most other people, bc I had to live with cf. Its the #1 quality I hope to pass on to my children.

 

[Shine]

*BIG HUGS* to all of you on here. I really hope th I here ya friends and totally get it! <img src="i/expressions/face-icon-small-sad.gif" border="0">

I had some crying moments earlier this week bc I too have been struggling to keep my head above water so to speak with all that c.f throws at you.
For months recently I've been kept up night after night with very bad wheeziness, chest tightness, chest muscular cramps that are so painful in my lungs and not being able to catch my breath- like I'm suffocating. Its just awful. Not to mention the non stop coughing that suddenly happen randomly. My sleeping pattens are a mess. And I (like Proxy mentioned earlier in this post) feel like I'm sleeping my life away too <img src="i/expressions/face-icon-small-sad.gif" border="0"> bc I need heaps of sleep to cope with it all.

I'm grateful that I have a very supportive, caring and loving husband who takes good care of me <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm also grateful for a roof over my head, a warm bed to sleep in and that i always have food on the table.

And lastly...that I can leave all my worries with the Lord and put my faith and trust in Him to see me through <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Shine]

*BIG HUGS* to all of you on here. I really hope th I here ya friends and totally get it! <img src="i/expressions/face-icon-small-sad.gif" border="0">

I had some crying moments earlier this week bc I too have been struggling to keep my head above water so to speak with all that c.f throws at you.
For months recently I've been kept up night after night with very bad wheeziness, chest tightness, chest muscular cramps that are so painful in my lungs and not being able to catch my breath- like I'm suffocating. Its just awful. Not to mention the non stop coughing that suddenly happen randomly. My sleeping pattens are a mess. And I (like Proxy mentioned earlier in this post) feel like I'm sleeping my life away too <img src="i/expressions/face-icon-small-sad.gif" border="0"> bc I need heaps of sleep to cope with it all.

I'm grateful that I have a very supportive, caring and loving husband who takes good care of me <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm also grateful for a roof over my head, a warm bed to sleep in and that i always have food on the table.

And lastly...that I can leave all my worries with the Lord and put my faith and trust in Him to see me through <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Shine]

*BIG HUGS* to all of you on here. I really hope th I here ya friends and totally get it! <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I had some crying moments earlier this week bc I too have been struggling to keep my head above water so to speak with all that c.f throws at you.
<br />For months recently I've been kept up night after night with very bad wheeziness, chest tightness, chest muscular cramps that are so painful in my lungs and not being able to catch my breath- like I'm suffocating. Its just awful. Not to mention the non stop coughing that suddenly happen randomly. My sleeping pattens are a mess. And I (like Proxy mentioned earlier in this post) feel like I'm sleeping my life away too <img src="i/expressions/face-icon-small-sad.gif" border="0"> bc I need heaps of sleep to cope with it all.
<br />
<br />I'm grateful that I have a very supportive, caring and loving husband who takes good care of me <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I'm also grateful for a roof over my head, a warm bed to sleep in and that i always have food on the table.
<br />
<br />And lastly...that I can leave all my worries with the Lord and put my faith and trust in Him to see me through <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ScottBucknut]

I have finally hit the wall. My sisters exact words to me were" you have a gift from God" in reference to the fact that I have been healthy for so long. I am a 38 m with f508 and r117h combo. I was diagnosed at one year old. I have very little lung problems and some stomach issues. Compared to most of you here I am very lucky. The problem is,( here is my GIFT) since I was so healthy growing up, nobody took the time to talk to me about the disease or about coping with it. I was not even told that it could be fatal. It took me to reach my teen years and looking it up in the World Book encyclopedia to find out what the disease really was and the fact that at that time 19 was the median age of survival. I took a bad turn at this point and tried not to think or talk about it because it scared me to death. I actually had the idea in my head that my death would be comparable to drowning in my own saliva instead of what really happens. I then refused to go to college thinking of it as a waste of money for me and my parents due to the disease and the fact that I truly did not have a good understanding of the disease and thought I would be dead by 30 at best. As I worked after high school, we came into the age of easy credit, and I thought if these people want to give me all this credit, if I carry enough life insurance through work and credit unions, ect, I could live a life that would allow me to see a lifetimes worth of things in the short time that I thought I had. I would not have to worry about the bill as long as I kept making payments. I also refused to let myself get involved with a woman to the point of getting married because I would feel guilty about leaving her if and when I died and did not want to have children for the same reason. I let CF dictate my life due to misinformation and misunderstanding instead of trying to overcome it, and now I am unemployed and facing bankruptcy due to my stupidity. I have no right to complain, I am "the lucky one" that does not have to deal with all of the medical issues that most of you here do, but I wish that someone would have stepped forward and talked to me about the disease, what it is, and how to help cope with it, especially since I have a moderate case of the disease. This is the first public time that I have shared this with anyone, because I feel guilty for being a quitter when all of the people out there with real problems from the disease struggle every day. I would trade places with any one of you today so that you could be healthy and I could take on your burden of the disease because I do not deserve this. I gave up for no reason and you all fight with all the reasons in the world to give up. I have lost to cf on the battlefield of the mind instead of the battlefield of physical health and it is truly sad. I hope that today cf kids receive more mental help with the disease than I did.

 

[ScottBucknut]

I have finally hit the wall. My sisters exact words to me were" you have a gift from God" in reference to the fact that I have been healthy for so long. I am a 38 m with f508 and r117h combo. I was diagnosed at one year old. I have very little lung problems and some stomach issues. Compared to most of you here I am very lucky. The problem is,( here is my GIFT) since I was so healthy growing up, nobody took the time to talk to me about the disease or about coping with it. I was not even told that it could be fatal. It took me to reach my teen years and looking it up in the World Book encyclopedia to find out what the disease really was and the fact that at that time 19 was the median age of survival. I took a bad turn at this point and tried not to think or talk about it because it scared me to death. I actually had the idea in my head that my death would be comparable to drowning in my own saliva instead of what really happens. I then refused to go to college thinking of it as a waste of money for me and my parents due to the disease and the fact that I truly did not have a good understanding of the disease and thought I would be dead by 30 at best. As I worked after high school, we came into the age of easy credit, and I thought if these people want to give me all this credit, if I carry enough life insurance through work and credit unions, ect, I could live a life that would allow me to see a lifetimes worth of things in the short time that I thought I had. I would not have to worry about the bill as long as I kept making payments. I also refused to let myself get involved with a woman to the point of getting married because I would feel guilty about leaving her if and when I died and did not want to have children for the same reason. I let CF dictate my life due to misinformation and misunderstanding instead of trying to overcome it, and now I am unemployed and facing bankruptcy due to my stupidity. I have no right to complain, I am "the lucky one" that does not have to deal with all of the medical issues that most of you here do, but I wish that someone would have stepped forward and talked to me about the disease, what it is, and how to help cope with it, especially since I have a moderate case of the disease. This is the first public time that I have shared this with anyone, because I feel guilty for being a quitter when all of the people out there with real problems from the disease struggle every day. I would trade places with any one of you today so that you could be healthy and I could take on your burden of the disease because I do not deserve this. I gave up for no reason and you all fight with all the reasons in the world to give up. I have lost to cf on the battlefield of the mind instead of the battlefield of physical health and it is truly sad. I hope that today cf kids receive more mental help with the disease than I did.

 

[ScottBucknut]

I have finally hit the wall. My sisters exact words to me were" you have a gift from God" in reference to the fact that I have been healthy for so long. I am a 38 m with f508 and r117h combo. I was diagnosed at one year old. I have very little lung problems and some stomach issues. Compared to most of you here I am very lucky. The problem is,( here is my GIFT) since I was so healthy growing up, nobody took the time to talk to me about the disease or about coping with it. I was not even told that it could be fatal. It took me to reach my teen years and looking it up in the World Book encyclopedia to find out what the disease really was and the fact that at that time 19 was the median age of survival. I took a bad turn at this point and tried not to think or talk about it because it scared me to death. I actually had the idea in my head that my death would be comparable to drowning in my own saliva instead of what really happens. I then refused to go to college thinking of it as a waste of money for me and my parents due to the disease and the fact that I truly did not have a good understanding of the disease and thought I would be dead by 30 at best. As I worked after high school, we came into the age of easy credit, and I thought if these people want to give me all this credit, if I carry enough life insurance through work and credit unions, ect, I could live a life that would allow me to see a lifetimes worth of things in the short time that I thought I had. I would not have to worry about the bill as long as I kept making payments. I also refused to let myself get involved with a woman to the point of getting married because I would feel guilty about leaving her if and when I died and did not want to have children for the same reason. I let CF dictate my life due to misinformation and misunderstanding instead of trying to overcome it, and now I am unemployed and facing bankruptcy due to my stupidity. I have no right to complain, I am "the lucky one" that does not have to deal with all of the medical issues that most of you here do, but I wish that someone would have stepped forward and talked to me about the disease, what it is, and how to help cope with it, especially since I have a moderate case of the disease. This is the first public time that I have shared this with anyone, because I feel guilty for being a quitter when all of the people out there with real problems from the disease struggle every day. I would trade places with any one of you today so that you could be healthy and I could take on your burden of the disease because I do not deserve this. I gave up for no reason and you all fight with all the reasons in the world to give up. I have lost to cf on the battlefield of the mind instead of the battlefield of physical health and it is truly sad. I hope that today cf kids receive more mental help with the disease than I did.

 

[Iamqueenofeverything]

ScottBucknut
thanks for sharing with us! that is brave. if you ever need to talk about anything, we are here for you and we can help. it is so nice to put our thoughts and feelings and etc on here and we will understand.

 

[Iamqueenofeverything]

ScottBucknut
thanks for sharing with us! that is brave. if you ever need to talk about anything, we are here for you and we can help. it is so nice to put our thoughts and feelings and etc on here and we will understand.

 

[Iamqueenofeverything]

ScottBucknut
<br />thanks for sharing with us! that is brave. if you ever need to talk about anything, we are here for you and we can help. it is so nice to put our thoughts and feelings and etc on here and we will understand.

 

[tessa55454]

Scott, that was a big deal. Cf affects people on many layers. Mental, physical, all of it. The mental part I think is sometimes harder than the physical, because the mental seems to push, guide the physical: awareness, coping mechanisms, how to endure, how to have the strength, how to let go, how to overcome, how to say enough. Frankly, no matter how many ways, and I have look at it in so many ways, CF is exhausting.