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Iamqueenofeverything
11-14-2010, 09:41 PM
i usuall have a good attitude about my cf but sometimes i just need to vent to ppl who understand and not feel sorry for me.

if you want to vent, please do but also leave something you are grateful for because of Cf such as what you have learned..

right now i am doing 18 days of home ivs. because of this, i have missed out on two of my good friends birthday parites and some other parties like a baby shower for my singles minister's wife. i am missing out on my accountilbilty group where a group of girls hold each other accountible to our Christian faith so we can grow stronger.

i am sleeping so much because i have no energy and the meds require me to get up early and keep me up late at night. I am missing out on my job because of all the meds and treatments i need to do.

i hate missing out because i feel like my boss is disappointed in me.

i also hate when i cant keep up with my friends and family.

on the positive side, i can email my doctor and he can admitt me via email and phone calls. i am grateful that i can do all my days of iv meds at home and that i can be on my dad's insurance. i have loving and suppotive family and friends who pray for me. i am grateful i can adminster my ivs myself.

Iamqueenofeverything
11-14-2010, 09:41 PM
i usuall have a good attitude about my cf but sometimes i just need to vent to ppl who understand and not feel sorry for me.

if you want to vent, please do but also leave something you are grateful for because of Cf such as what you have learned..

right now i am doing 18 days of home ivs. because of this, i have missed out on two of my good friends birthday parites and some other parties like a baby shower for my singles minister's wife. i am missing out on my accountilbilty group where a group of girls hold each other accountible to our Christian faith so we can grow stronger.

i am sleeping so much because i have no energy and the meds require me to get up early and keep me up late at night. I am missing out on my job because of all the meds and treatments i need to do.

i hate missing out because i feel like my boss is disappointed in me.

i also hate when i cant keep up with my friends and family.

on the positive side, i can email my doctor and he can admitt me via email and phone calls. i am grateful that i can do all my days of iv meds at home and that i can be on my dad's insurance. i have loving and suppotive family and friends who pray for me. i am grateful i can adminster my ivs myself.

Iamqueenofeverything
11-14-2010, 09:41 PM
i usuall have a good attitude about my cf but sometimes i just need to vent to ppl who understand and not feel sorry for me.
<br />
<br />if you want to vent, please do but also leave something you are grateful for because of Cf such as what you have learned..
<br />
<br />right now i am doing 18 days of home ivs. because of this, i have missed out on two of my good friends birthday parites and some other parties like a baby shower for my singles minister's wife. i am missing out on my accountilbilty group where a group of girls hold each other accountible to our Christian faith so we can grow stronger.
<br />
<br />i am sleeping so much because i have no energy and the meds require me to get up early and keep me up late at night. I am missing out on my job because of all the meds and treatments i need to do.
<br />
<br />i hate missing out because i feel like my boss is disappointed in me.
<br />
<br />i also hate when i cant keep up with my friends and family.
<br />
<br />on the positive side, i can email my doctor and he can admitt me via email and phone calls. i am grateful that i can do all my days of iv meds at home and that i can be on my dad's insurance. i have loving and suppotive family and friends who pray for me. i am grateful i can adminster my ivs myself.

Proxy
11-15-2010, 02:27 AM
CF is a pain,I just got out of hospital a week ago yet I am still declining, I continue doing everything im told to do but when I have no progress its extremly frustrating.I have one week to get better before im admitted again, all I think about is that im getting sent back and I have no control over anything.
Im on full time oxygen again when I worked so hard to get off of it years ago, it feels like a personal failure, its unpleasant having a leash on your face all the time.
I get tired from everything, even taking a shower, today I bickered with someone about my diet and the small confrontation wore me out so much I needed to lay down.
At night I sleep for about 13 hours, I only get up cause I need to do my therapy, I feel like I am sleeping my life away and im a waste of space.

But,I am thankful I have free healthcare and am blessed that because of CF I realised things about life I may not have known otherwise,like cherish every single day because you never know..

that was my vent ^^

Proxy
11-15-2010, 02:27 AM
CF is a pain,I just got out of hospital a week ago yet I am still declining, I continue doing everything im told to do but when I have no progress its extremly frustrating.I have one week to get better before im admitted again, all I think about is that im getting sent back and I have no control over anything.
Im on full time oxygen again when I worked so hard to get off of it years ago, it feels like a personal failure, its unpleasant having a leash on your face all the time.
I get tired from everything, even taking a shower, today I bickered with someone about my diet and the small confrontation wore me out so much I needed to lay down.
At night I sleep for about 13 hours, I only get up cause I need to do my therapy, I feel like I am sleeping my life away and im a waste of space.

But,I am thankful I have free healthcare and am blessed that because of CF I realised things about life I may not have known otherwise,like cherish every single day because you never know..

that was my vent ^^

Proxy
11-15-2010, 02:27 AM
CF is a pain,I just got out of hospital a week ago yet I am still declining, I continue doing everything im told to do but when I have no progress its extremly frustrating.I have one week to get better before im admitted again, all I think about is that im getting sent back and I have no control over anything.
<br />Im on full time oxygen again when I worked so hard to get off of it years ago, it feels like a personal failure, its unpleasant having a leash on your face all the time.
<br />I get tired from everything, even taking a shower, today I bickered with someone about my diet and the small confrontation wore me out so much I needed to lay down.
<br />At night I sleep for about 13 hours, I only get up cause I need to do my therapy, I feel like I am sleeping my life away and im a waste of space.
<br />
<br />But,I am thankful I have free healthcare and am blessed that because of CF I realised things about life I may not have known otherwise,like cherish every single day because you never know..
<br />
<br />that was my vent ^^

ej0820
11-15-2010, 02:57 AM
wow...

the combination of you two sound like me. I'm on my fifth (? I've lost count...) week of IVs at home and am EXHAUSTED. I, too, am up late and up early just to do meds and it's really taking a toll on me. I'm so nauseous from these meds and nothing is helping it. I, too, feel like I'm sleeping my life away and becoming more and more a waste of space and whatever air I can get in and out. My work is so accommodating to me and very understanding of time I need off to do all these meds, but I too feel like I'm such a disappointment to my managers.

CF has, however, given me the opportunity to meet so many wonderful people like you guys and has allowed me to meet some of the most inspiring people ever!

ej0820
11-15-2010, 02:57 AM
wow...

the combination of you two sound like me. I'm on my fifth (? I've lost count...) week of IVs at home and am EXHAUSTED. I, too, am up late and up early just to do meds and it's really taking a toll on me. I'm so nauseous from these meds and nothing is helping it. I, too, feel like I'm sleeping my life away and becoming more and more a waste of space and whatever air I can get in and out. My work is so accommodating to me and very understanding of time I need off to do all these meds, but I too feel like I'm such a disappointment to my managers.

CF has, however, given me the opportunity to meet so many wonderful people like you guys and has allowed me to meet some of the most inspiring people ever!

ej0820
11-15-2010, 02:57 AM
wow...
<br />
<br />the combination of you two sound like me. I'm on my fifth (? I've lost count...) week of IVs at home and am EXHAUSTED. I, too, am up late and up early just to do meds and it's really taking a toll on me. I'm so nauseous from these meds and nothing is helping it. I, too, feel like I'm sleeping my life away and becoming more and more a waste of space and whatever air I can get in and out. My work is so accommodating to me and very understanding of time I need off to do all these meds, but I too feel like I'm such a disappointment to my managers.
<br />
<br />CF has, however, given me the opportunity to meet so many wonderful people like you guys and has allowed me to meet some of the most inspiring people ever!

entropy
11-15-2010, 03:03 PM
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Proxy...

Sending healing vibes your way <img src="i/expressions/face-icon-small-sad.gif" border="0">

entropy
11-15-2010, 03:03 PM
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Proxy...

Sending healing vibes your way <img src="i/expressions/face-icon-small-sad.gif" border="0">

entropy
11-15-2010, 03:03 PM
<img src="i/expressions/face-icon-small-sad.gif" border="0"> Proxy...
<br />
<br />Sending healing vibes your way <img src="i/expressions/face-icon-small-sad.gif" border="0">

minimedic304
11-15-2010, 04:53 PM
i am 30 and feel like i just hit the wall with my cf....i suffered two collapsed lungs in one month...have to get two chest tubes....and now i am on iv antibiotics for another two weeks...i havent left my house much for over 1 1/2 months....i cant take care of my son and pisses me off more than anything....i am trying to fight back because i dont think i can handle a transplant physically or mentally....and i know 2 cf patients that just passed away in the last two weeks and that is on my mind.....cf sucks

minimedic304
11-15-2010, 04:53 PM
i am 30 and feel like i just hit the wall with my cf....i suffered two collapsed lungs in one month...have to get two chest tubes....and now i am on iv antibiotics for another two weeks...i havent left my house much for over 1 1/2 months....i cant take care of my son and pisses me off more than anything....i am trying to fight back because i dont think i can handle a transplant physically or mentally....and i know 2 cf patients that just passed away in the last two weeks and that is on my mind.....cf sucks

minimedic304
11-15-2010, 04:53 PM
i am 30 and feel like i just hit the wall with my cf....i suffered two collapsed lungs in one month...have to get two chest tubes....and now i am on iv antibiotics for another two weeks...i havent left my house much for over 1 1/2 months....i cant take care of my son and pisses me off more than anything....i am trying to fight back because i dont think i can handle a transplant physically or mentally....and i know 2 cf patients that just passed away in the last two weeks and that is on my mind.....cf sucks

sexxiej
11-15-2010, 06:43 PM
its been one month since my last hospitalization, but its a fight everyday.. im so sick and tired of my stomach constantly hurting.. my enzymes arent working and i cant get my diabetes under control...i've lost my job due to my cf and being in the hospital, i cant keep my frikkin weight up, im constantly sleepin all the time..i stay up all through the night coughin my lung up..its gettin to the point im startin to cough up blood..im sick and tired of being sick and tired...and the fact that i have osteoprosis my bones are KILLING ME...i seriously just wanna cry..


everyday is a learning experience with cf..i wouldnt change that for anything...cf has taught me how to appreciate things in life and not take it for granted

sexxiej
11-15-2010, 06:43 PM
its been one month since my last hospitalization, but its a fight everyday.. im so sick and tired of my stomach constantly hurting.. my enzymes arent working and i cant get my diabetes under control...i've lost my job due to my cf and being in the hospital, i cant keep my frikkin weight up, im constantly sleepin all the time..i stay up all through the night coughin my lung up..its gettin to the point im startin to cough up blood..im sick and tired of being sick and tired...and the fact that i have osteoprosis my bones are KILLING ME...i seriously just wanna cry..


everyday is a learning experience with cf..i wouldnt change that for anything...cf has taught me how to appreciate things in life and not take it for granted

sexxiej
11-15-2010, 06:43 PM
its been one month since my last hospitalization, but its a fight everyday.. im so sick and tired of my stomach constantly hurting.. my enzymes arent working and i cant get my diabetes under control...i've lost my job due to my cf and being in the hospital, i cant keep my frikkin weight up, im constantly sleepin all the time..i stay up all through the night coughin my lung up..its gettin to the point im startin to cough up blood..im sick and tired of being sick and tired...and the fact that i have osteoprosis my bones are KILLING ME...i seriously just wanna cry..
<br />
<br />
<br />everyday is a learning experience with cf..i wouldnt change that for anything...cf has taught me how to appreciate things in life and not take it for granted

windex125
11-15-2010, 08:40 PM
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

windex125
11-15-2010, 08:40 PM
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

windex125
11-15-2010, 08:40 PM
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
11-15-2010, 08:45 PM
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
11-15-2010, 08:45 PM
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
11-15-2010, 08:45 PM
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
11-15-2010, 11:01 PM
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
11-15-2010, 11:01 PM
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
11-15-2010, 11:01 PM
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
11-16-2010, 12:36 PM
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
11-16-2010, 12:36 PM
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
11-16-2010, 12:36 PM
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
11-17-2010, 01:52 PM
*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
11-17-2010, 01:52 PM
*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
11-17-2010, 01:52 PM
*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
11-17-2010, 03:01 PM
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
11-17-2010, 03:01 PM
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
11-17-2010, 03:01 PM
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
11-17-2010, 10:59 PM
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
11-17-2010, 10:59 PM
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
11-17-2010, 10:59 PM
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
11-18-2010, 02:04 AM
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.

tessa55454
11-18-2010, 02:04 AM
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.

tessa55454
11-18-2010, 02:04 AM
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.

Aftershock68
11-18-2010, 05:15 AM
Scott,
You sound a lot like me. I don't have CF as severe as some but the older I'm getting, the harder it is to stay well, keep my weight up, and have energy. My lung function is at 48% and I have stomach issues with an ulcer. The mental stress is the most exhausting. I too have pushed people away for some of the same reason as you, plus a few more. I was told that I should never have children because it would be too hard on me. I wanted to be a mom badly, but I didn't want my children to ever feel scared from seeing their mom sick and I didn't want them to experience abandonment issues if I ever passed away. I never talked about CF to anyone, not even my friends. It wasn't until high school that my best friend found out I had CF and that was because I got sick and people were asking where I was, why I disappeared all of a sudden. My family never talked about CF to me, nor did my doctor other than I had to take my medicines in order to stay well, and I may not live as long as some. My mom told me I could do whatever anyone else could so don't sit around and wallow in my disease, I'm fine. I understand now, that maybe she thought she was making me tougher by not allowing me to feel sorry for myself which was good, but at the same time, when I was 21 and almost died from getting really sick, she wasn't there for me. I realized she has more issues than I do. I partied in high school as hard as the rest of my friends. I didn't go to college either because I figured why should I? I would be dead at age 30 anyway. I have been divorced twice. I wouldn't buy a house with either of my husbands because that was too big of a commitment. What if I suddenly wanted to move or travel somewhere. I lived life recklessly because of fear of dying. At age 33, I suddenly had a "AHA" moment. I realized I was going to live longer than expected, because of advancements in medicine and treatment, so I guess I better get my act together. I also realized I have been self-destructing because I thought I deserved it. I divorced my second husband, moved back home, and went back to school. I have done a lot of soul searching and growing, realizing that I had been living my life in denial and by everyone else's standards instead of my own. I can't compare myself to others and punish myself just because I think I'm not struggling as much as some people or I'm either not as healthy or more healthy than some. Or I'm not smart or rich enough etc., as some people. Please don't be so hard on yourself, and I will try to live by my own advice. I think everyone is doing the best that they can, and until we walk in someone else's shoes, we really don't know what anyone is truly dealing with from day to day. Sorry for the novel, but I hope this helps. Everything will work out, it always does. Take care and stay healthy.~CJ 42 W/CF diagnosed at 3 hours old.

Aftershock68
11-18-2010, 05:15 AM
Scott,
You sound a lot like me. I don't have CF as severe as some but the older I'm getting, the harder it is to stay well, keep my weight up, and have energy. My lung function is at 48% and I have stomach issues with an ulcer. The mental stress is the most exhausting. I too have pushed people away for some of the same reason as you, plus a few more. I was told that I should never have children because it would be too hard on me. I wanted to be a mom badly, but I didn't want my children to ever feel scared from seeing their mom sick and I didn't want them to experience abandonment issues if I ever passed away. I never talked about CF to anyone, not even my friends. It wasn't until high school that my best friend found out I had CF and that was because I got sick and people were asking where I was, why I disappeared all of a sudden. My family never talked about CF to me, nor did my doctor other than I had to take my medicines in order to stay well, and I may not live as long as some. My mom told me I could do whatever anyone else could so don't sit around and wallow in my disease, I'm fine. I understand now, that maybe she thought she was making me tougher by not allowing me to feel sorry for myself which was good, but at the same time, when I was 21 and almost died from getting really sick, she wasn't there for me. I realized she has more issues than I do. I partied in high school as hard as the rest of my friends. I didn't go to college either because I figured why should I? I would be dead at age 30 anyway. I have been divorced twice. I wouldn't buy a house with either of my husbands because that was too big of a commitment. What if I suddenly wanted to move or travel somewhere. I lived life recklessly because of fear of dying. At age 33, I suddenly had a "AHA" moment. I realized I was going to live longer than expected, because of advancements in medicine and treatment, so I guess I better get my act together. I also realized I have been self-destructing because I thought I deserved it. I divorced my second husband, moved back home, and went back to school. I have done a lot of soul searching and growing, realizing that I had been living my life in denial and by everyone else's standards instead of my own. I can't compare myself to others and punish myself just because I think I'm not struggling as much as some people or I'm either not as healthy or more healthy than some. Or I'm not smart or rich enough etc., as some people. Please don't be so hard on yourself, and I will try to live by my own advice. I think everyone is doing the best that they can, and until we walk in someone else's shoes, we really don't know what anyone is truly dealing with from day to day. Sorry for the novel, but I hope this helps. Everything will work out, it always does. Take care and stay healthy.~CJ 42 W/CF diagnosed at 3 hours old.

Aftershock68
11-18-2010, 05:15 AM
Scott,
<br />You sound a lot like me. I don't have CF as severe as some but the older I'm getting, the harder it is to stay well, keep my weight up, and have energy. My lung function is at 48% and I have stomach issues with an ulcer. The mental stress is the most exhausting. I too have pushed people away for some of the same reason as you, plus a few more. I was told that I should never have children because it would be too hard on me. I wanted to be a mom badly, but I didn't want my children to ever feel scared from seeing their mom sick and I didn't want them to experience abandonment issues if I ever passed away. I never talked about CF to anyone, not even my friends. It wasn't until high school that my best friend found out I had CF and that was because I got sick and people were asking where I was, why I disappeared all of a sudden. My family never talked about CF to me, nor did my doctor other than I had to take my medicines in order to stay well, and I may not live as long as some. My mom told me I could do whatever anyone else could so don't sit around and wallow in my disease, I'm fine. I understand now, that maybe she thought she was making me tougher by not allowing me to feel sorry for myself which was good, but at the same time, when I was 21 and almost died from getting really sick, she wasn't there for me. I realized she has more issues than I do. I partied in high school as hard as the rest of my friends. I didn't go to college either because I figured why should I? I would be dead at age 30 anyway. I have been divorced twice. I wouldn't buy a house with either of my husbands because that was too big of a commitment. What if I suddenly wanted to move or travel somewhere. I lived life recklessly because of fear of dying. At age 33, I suddenly had a "AHA" moment. I realized I was going to live longer than expected, because of advancements in medicine and treatment, so I guess I better get my act together. I also realized I have been self-destructing because I thought I deserved it. I divorced my second husband, moved back home, and went back to school. I have done a lot of soul searching and growing, realizing that I had been living my life in denial and by everyone else's standards instead of my own. I can't compare myself to others and punish myself just because I think I'm not struggling as much as some people or I'm either not as healthy or more healthy than some. Or I'm not smart or rich enough etc., as some people. Please don't be so hard on yourself, and I will try to live by my own advice. I think everyone is doing the best that they can, and until we walk in someone else's shoes, we really don't know what anyone is truly dealing with from day to day. Sorry for the novel, but I hope this helps. Everything will work out, it always does. Take care and stay healthy.~CJ 42 W/CF diagnosed at 3 hours old.

windex125
11-19-2010, 02:20 PM
Wow those posts really moved me as I saw myself in alot of them, esp. the credit stuff and oh I have to have it I may not be here tomorrow. Now here I am at 55 in bad debt again for the 3rd or 4th time. So absolutely stupid. and I think that is worse than my sickness, my irresponsibility with money and my life plan. I didn't have one cause I had a excuse. I also was not going to live long. I wkd for 20yrs. I saved for the down payment on our house the only thing I can take credit for. But the spendg has always been a issue. I was told I cld not have children so did not worry abt birth control then at 36 guess what. It was very hard VERY at times to deal with a infant and being sick, but he grew to know me doing treatments and how my husband wld pound on my back (I told him I had asthma) I even taught him how to pound on my back if my husband was working late, he thought it was a fun thing to help before vests came along. I never showed low self esteem in front of him. I went on class trips, helped with lunch dates. Never told anyone my biz. I didn't want him to be the kid with the sick Mom so instead I was super Mom. During his teenage yrs.he started watching the REAL LIFE and there was a young girl on there Frankie who had CF he came into my room and said Mom you have CF and by that time I felt I cld tell him the truth. Now he is a typical mean 19yr. old boy. What is my point here? I too lived in denial more or less, was reckless to a point. The important thing is to get back on track, take yr. life back give it purpose and meaning, stop lookg for short cuts and excuses. That famous commerical a mind is a terrbile thing to waste is so true. Pull yrself together. COME ON set a plan for yourself.Get on the phone with the creditors, alot of them will work with payments and no interest.They wld just like some sort of payment, cause once those calls start coming you will get nuts. Since yr. health is fairly well get 2 jobs if you have to. Make a plan start today. As Aftershock said don't beat yrself up abt it now, just get moving with a plan of action. Also don't offer to chg. places with any sick person. When my sister wld say oh Pat your so thin, I wld say oh yea give me 50lbs and you can have my lungs, but the truth was I didn't want the 50lbs. or the sickness. I just try to live my life with the deck of cards I've been dealt. The mental wt. of disease, is at times as heavy as the physical, but you control yr. mind....Pat-55/CF

windex125
11-19-2010, 02:20 PM
Wow those posts really moved me as I saw myself in alot of them, esp. the credit stuff and oh I have to have it I may not be here tomorrow. Now here I am at 55 in bad debt again for the 3rd or 4th time. So absolutely stupid. and I think that is worse than my sickness, my irresponsibility with money and my life plan. I didn't have one cause I had a excuse. I also was not going to live long. I wkd for 20yrs. I saved for the down payment on our house the only thing I can take credit for. But the spendg has always been a issue. I was told I cld not have children so did not worry abt birth control then at 36 guess what. It was very hard VERY at times to deal with a infant and being sick, but he grew to know me doing treatments and how my husband wld pound on my back (I told him I had asthma) I even taught him how to pound on my back if my husband was working late, he thought it was a fun thing to help before vests came along. I never showed low self esteem in front of him. I went on class trips, helped with lunch dates. Never told anyone my biz. I didn't want him to be the kid with the sick Mom so instead I was super Mom. During his teenage yrs.he started watching the REAL LIFE and there was a young girl on there Frankie who had CF he came into my room and said Mom you have CF and by that time I felt I cld tell him the truth. Now he is a typical mean 19yr. old boy. What is my point here? I too lived in denial more or less, was reckless to a point. The important thing is to get back on track, take yr. life back give it purpose and meaning, stop lookg for short cuts and excuses. That famous commerical a mind is a terrbile thing to waste is so true. Pull yrself together. COME ON set a plan for yourself.Get on the phone with the creditors, alot of them will work with payments and no interest.They wld just like some sort of payment, cause once those calls start coming you will get nuts. Since yr. health is fairly well get 2 jobs if you have to. Make a plan start today. As Aftershock said don't beat yrself up abt it now, just get moving with a plan of action. Also don't offer to chg. places with any sick person. When my sister wld say oh Pat your so thin, I wld say oh yea give me 50lbs and you can have my lungs, but the truth was I didn't want the 50lbs. or the sickness. I just try to live my life with the deck of cards I've been dealt. The mental wt. of disease, is at times as heavy as the physical, but you control yr. mind....Pat-55/CF

windex125
11-19-2010, 02:20 PM
Wow those posts really moved me as I saw myself in alot of them, esp. the credit stuff and oh I have to have it I may not be here tomorrow. Now here I am at 55 in bad debt again for the 3rd or 4th time. So absolutely stupid. and I think that is worse than my sickness, my irresponsibility with money and my life plan. I didn't have one cause I had a excuse. I also was not going to live long. I wkd for 20yrs. I saved for the down payment on our house the only thing I can take credit for. But the spendg has always been a issue. I was told I cld not have children so did not worry abt birth control then at 36 guess what. It was very hard VERY at times to deal with a infant and being sick, but he grew to know me doing treatments and how my husband wld pound on my back (I told him I had asthma) I even taught him how to pound on my back if my husband was working late, he thought it was a fun thing to help before vests came along. I never showed low self esteem in front of him. I went on class trips, helped with lunch dates. Never told anyone my biz. I didn't want him to be the kid with the sick Mom so instead I was super Mom. During his teenage yrs.he started watching the REAL LIFE and there was a young girl on there Frankie who had CF he came into my room and said Mom you have CF and by that time I felt I cld tell him the truth. Now he is a typical mean 19yr. old boy. What is my point here? I too lived in denial more or less, was reckless to a point. The important thing is to get back on track, take yr. life back give it purpose and meaning, stop lookg for short cuts and excuses. That famous commerical a mind is a terrbile thing to waste is so true. Pull yrself together. COME ON set a plan for yourself.Get on the phone with the creditors, alot of them will work with payments and no interest.They wld just like some sort of payment, cause once those calls start coming you will get nuts. Since yr. health is fairly well get 2 jobs if you have to. Make a plan start today. As Aftershock said don't beat yrself up abt it now, just get moving with a plan of action. Also don't offer to chg. places with any sick person. When my sister wld say oh Pat your so thin, I wld say oh yea give me 50lbs and you can have my lungs, but the truth was I didn't want the 50lbs. or the sickness. I just try to live my life with the deck of cards I've been dealt. The mental wt. of disease, is at times as heavy as the physical, but you control yr. mind....Pat-55/CF