Hi Cfers, I just need to vent. I dont know how anyone stays positive about this disease. You are all the only ones who understand the daily struggle of CF. I have no family members who have it so I come to this board for info and support. I just feel so angry, deflated, depressed. I dont know if being on here is even mentally good for me. When I read about someone passing-like countrygirl and jazzysmom (who I was friends with over this board)...it just really effects me. I dont understand why I just spoke with them and then they are gone. I am only 41 years old and I am a CF senior citizen. Also, I know this is wrong but I feel so jealous for the people that have been on VX770. I am happy and joyful that they are well but I also want to be well. What about the other 96% of us??? I feel like time is running out for me. I am at 35-40% FEV1 and I am so anxious about the next few years....will I even be here? i have been sick all of my life and I just want a break. I just feel like crap all the time and I am scared all the time. everytime someone passes everyone posts "they are breathing easy"...well, where are they breathing easy? Heaven? with God? Does life go on after this or do we just suffer to our last breath and then lights out? Ugh! sorry for the rant. I just know that everyone on this board must feel some of these feeling some of the time.
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Need to vent
- Thread starter missT
- Start date
Hi Cfers, I just need to vent. I dont know how anyone stays positive about this disease. You are all the only ones who understand the daily struggle of CF. I have no family members who have it so I come to this board for info and support. I just feel so angry, deflated, depressed. I dont know if being on here is even mentally good for me. When I read about someone passing-like countrygirl and jazzysmom (who I was friends with over this board)...it just really effects me. I dont understand why I just spoke with them and then they are gone. I am only 41 years old and I am a CF senior citizen. Also, I know this is wrong but I feel so jealous for the people that have been on VX770. I am happy and joyful that they are well but I also want to be well. What about the other 96% of us??? I feel like time is running out for me. I am at 35-40% FEV1 and I am so anxious about the next few years....will I even be here? i have been sick all of my life and I just want a break. I just feel like crap all the time and I am scared all the time. everytime someone passes everyone posts "they are breathing easy"...well, where are they breathing easy? Heaven? with God? Does life go on after this or do we just suffer to our last breath and then lights out? Ugh! sorry for the rant. I just know that everyone on this board must feel some of these feeling some of the time.
<p>Hi Cfers, I just need to vent. I dont know how anyone stays positive about this disease. You are all the only ones who understand the daily struggle of CF. I have no family members who have it so I come to this board for info and support. I just feel so angry, deflated, depressed. I dont know if being on here is even mentally good for me. When I read about someone passing-like countrygirl and jazzysmom (who I was friends with over this board)...it just really effects me. I dont understand why I just spoke with them and then they are gone. I am only 41 years old and I am a CF senior citizen. Also, I know this is wrong but I feel so jealous for the people that have been on VX770. I am happy and joyful that they are well but I also want to be well. What about the other 96% of us??? I feel like time is running out for me. I am at 35-40% FEV1 and I am so anxious about the next few years....will I even be here? i have been sick all of my life and I just want a break. I just feel like crap all the time and I am scared all the time. everytime someone passes everyone posts "they are breathing easy"...well, where are they breathing easy? Heaven? with God? Does life go on after this or do we just suffer to our last breath and then lights out? Ugh! sorry for the rant. I just know that everyone on this board must feel some of these feeling some of the time.
theLostMiler
New member
You aren't alone, I could have written most of this post <3
theLostMiler
New member
You aren't alone, I could have written most of this post <3
theLostMiler
New member
You aren't alone, I could have written most of this post <3
CF is a tough road that is for sure! It is hard to stay strong and positve and especially when one feel like crap! HA HA. Maybe talking to a counselor at your CF center will help? There are no magic words to get through this CF life. It is a hard one that is for sure, so I get what you are saying. Try to stay positive and hang in there!
CF is a tough road that is for sure! It is hard to stay strong and positve and especially when one feel like crap! HA HA. Maybe talking to a counselor at your CF center will help? There are no magic words to get through this CF life. It is a hard one that is for sure, so I get what you are saying. Try to stay positive and hang in there!
<p>CF is a tough road that is for sure! It is hard to stay strong and positve and especially when one feel like crap! HA HA. Maybe talking to a counselor at your CF center will help? There are no magic words to get through this CF life. It is a hard one that is for sure, so I get what you are saying. Try to stay positive and hang in there!
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musclemania70
New member
I feel exactly the same way.. very frustrated and knocked down. Everyone around me has to pick up the slack that I can't take care of. My husband works FT already and I am always wondering how does he have the energy left to help me clean, do laundry, go grocery shopping and everything else.
On top of that, the IV's aren't working and I get no relief.
And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
Don't feel bad for ranting. At least you know others here feel the same way you do.
On top of that, the IV's aren't working and I get no relief.
And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
Don't feel bad for ranting. At least you know others here feel the same way you do.
musclemania70
New member
I feel exactly the same way.. very frustrated and knocked down. Everyone around me has to pick up the slack that I can't take care of. My husband works FT already and I am always wondering how does he have the energy left to help me clean, do laundry, go grocery shopping and everything else.
On top of that, the IV's aren't working and I get no relief.
And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
Don't feel bad for ranting. At least you know others here feel the same way you do.
On top of that, the IV's aren't working and I get no relief.
And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
Don't feel bad for ranting. At least you know others here feel the same way you do.
musclemania70
New member
I feel exactly the same way.. very frustrated and knocked down. Everyone around me has to pick up the slack that I can't take care of. My husband works FT already and I am always wondering how does he have the energy left to help me clean, do laundry, go grocery shopping and everything else.
<br />On top of that, the IV's aren't working and I get no relief.
<br />
<br />And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
<br />
<br />Don't feel bad for ranting. At least you know others here feel the same way you do.
<br />On top of that, the IV's aren't working and I get no relief.
<br />
<br />And then you hear how much better life is for people on the new drug. FANTASTIC!! But is it really going to help the rest of us before its too late??
<br />
<br />Don't feel bad for ranting. At least you know others here feel the same way you do.
Come on team mate CF buddies. I know it is hard, but we have to keep a positive attitude. It would be nice if we had the new VX drugs, but it takes time. I realize that some of us do not have much time reaming including me FEV1 31, but maybe if we keep up the fight we will win. For me personally I am doing every thing I can to maintain every little bit of lung funcition I have, hopeing the new drugs will come soonner rather than later. Being compliant with your treatments and exercise program is extremely important as we all know. The Tobi and Cayston I feel like they are buying us some time, by keeping infecions down thus reducing poss. more scar tissue our lungs.
Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come on team we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come on team we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
Come on team mate CF buddies. I know it is hard, butwe have to keep a positive attitude. It would be nice if we had the new VX drugs, but it takes time. I realize that some of us do not have much time reaming including me FEV1 31, but maybe if we keep up the fight we will win. For me personally I am doing every thing I can to maintain everylittle bit of lung funcition I have, hopeing the new drugs will come soonner rather than later. Being compliant with your treatments and exercise programis extremely important as we all know. The Tobi and Cayston I feel like they are buying us some time, by keeping infecions down thus reducing poss.more scar tissueour lungs.
Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come onteam we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come onteam we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
<p>Come on team mate CF buddies. I know it is hard, butwe have to keep a positive attitude. It would be nice if we had the new VX drugs, but it takes time. I realize that some of us do not have much time reaming including me FEV1 31, but maybe if we keep up the fight we will win. For me personally I am doing every thing I can to maintain everylittle bit of lung funcition I have, hopeing the new drugs will come soonner rather than later. Being compliant with your treatments and exercise programis extremely important as we all know. The Tobi and Cayston I feel like they are buying us some time, by keeping infecions down thus reducing poss.more scar tissueour lungs.
<p>Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come onteam we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
<p>Cfers are fighters<img src="i/expressions/face-icon-small-smile.gif" border="0"> so come onteam we all want to get over the finish line. I have doing this battle for 63 yrs. neb. treatments 3-5 hrs. a day for last 10+ yrs, with a positive attitude 99% of the time, glass is half full. Life is a gift, just too short. Most winners are positive people.
scanboyd... I am very sorry, I know you are trying to help but sometimes words like this just don't when people are feeling like this! When you are already feeling beaten down, just being told 'Hey, FEEL POSITIVE!' does not help. It invalidates what one is going through and makes you feel like your feelings just don't count or like there is something wrong with you for feeling the struggle. Everyone out there struggling KNOWS they need to stay compliant, to do what they need to do to keep on top of their disease... that is why the struggle is as difficult as it is at times. I am glad that you are doing as well as you are and have kept up this battle for 63yrs, that is amazing. But PLEASE do not negate the struggles that others are enduring by making them feel like a 'buck up!!' is all that is needed to shake off these feelings or like somehow not keeping a smile on is all we need to win the fight. It is NOT that simple. *I don't mean to offend anyone and hope I didn't with my post, but this just hit a sensitive spot. It's been a difficult time staying positive about this disease here, too with the struggles we've faced with my daughter as well as in seeing so many losses in our community, and sometimes the 'pep talks' glossing over the realities of what the majority of people face with this disease hurt more than they help.*
scanboyd... I am very sorry, I know you are trying to help but sometimes words like this just don't when people are feeling like this! When you are already feeling beaten down, just being told 'Hey, FEEL POSITIVE!' does not help. It invalidates what one is going through and makes you feel like your feelings just don't count or like there is something wrong with you for feeling the struggle. Everyone out there struggling KNOWS they need to stay compliant, to do what they need to do to keep on top of their disease... that is why the struggle is as difficult as it is at times. I am glad that you are doing as well as you are and have kept up this battle for 63yrs, that is amazing. But PLEASE do not negate the struggles that others are enduring by making them feel like a 'buck up!!' is all that is needed to shake off these feelings or like somehow not keeping a smile on is all we need to win the fight. It is NOT that simple. *I don't mean to offend anyone and hope I didn't with my post, but this just hit a sensitive spot. It's been a difficult time staying positive about this disease here, too with the struggles we've faced with my daughter as well as in seeing so many losses in our community, and sometimes the 'pep talks' glossing over the realities of what the majority of people face with this disease hurt more than they help.*
<p>scanboyd... I am very sorry, I know you are trying to help but sometimes words like this just don't when people are feeling like this! When you are already feeling beaten down, just being told 'Hey, FEEL POSITIVE!' does not help. It invalidates what one is going through and makes you feel like your feelings just don't count or like there is something wrong with you for feeling the struggle. Everyone out there struggling KNOWS they need to stay compliant, to do what they need to do to keep on top of their disease... that is why the struggle is as difficult as it is at times. I am glad that you are doing as well as you are and have kept up this battle for 63yrs, that is amazing. But PLEASE do not negate the struggles that others are enduring by making them feel like a 'buck up!!' is all that is needed to shake off these feelings or like somehow not keeping a smile on is all we need to win the fight. It is NOT that simple. <br /> <br />*I don't mean to offend anyone and hope I didn't with my post, but this just hit a sensitive spot. It's been a difficult time staying positive about this disease here, too with the struggles we've faced with my daughter as well as in seeing so many losses in our community, and sometimes the 'pep talks' glossing over the realities of what the majority of people face with this disease hurt more than they help.*
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moxie1
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I sent you a pm
M
moxie1
Guest
I sent you a pm