i want to scream..

relat · Jan 14, 2007

my brother has cf and i cant stand it,i can not study at all,all day i am thinking of cf and possible problems coming in the future,death etc.i want to help but there is nothing i can do.anxiety is too much to do anything the whole day!i am just sitting,as if my life stopped.

relat 27,having brother 26 w/cf diagnosed at 20.

relat · Jan 14, 2007

my brother has cf and i cant stand it,i can not study at all,all day i am thinking of cf and possible problems coming in the future,death etc.i want to help but there is nothing i can do.anxiety is too much to do anything the whole day!i am just sitting,as if my life stopped.

relat 27,having brother 26 w/cf diagnosed at 20.

relat · Jan 14, 2007

my brother has cf and i cant stand it,i can not study at all,all day i am thinking of cf and possible problems coming in the future,death etc.i want to help but there is nothing i can do.anxiety is too much to do anything the whole day!i am just sitting,as if my life stopped.

relat 27,having brother 26 w/cf diagnosed at 20.

Jem · Jan 14, 2007

Go ahead...SCREAM, SCREAM SCREAM!!! You deserve it! Scream till you can't scream anymore. Then get on with living life. Try to look at all the blessings you have and that your brother has. Just being alive is a blessing. No one really wants to think about dying or how one will die but we can very easily get into a cycle where we waste many today's if we are consumed by these thoughts.

I live in the moment, this minute, this hour, this post that I am writing to you. It is in living and focusing in this moment that I do not let thoughts of tomorrow consume me. I do what I have to do to stay healthy. I don't like having to take the time each day to do my meds, exercise and vest treatments but I do it and try to find a way to make it more satisfying. I use the time to come visit on this forum, write emails to friends and do research on various topics. I am doing my vest treatment as I write this to you.

You sound like a very caring person and your brother is fortunate to have you. Please do not think that as a relative you cannot do anything for your brother. I have 4 siblings, one with cf who is 4 years older than me. They love me and just knowing that if I needed something, anything, that they would be there for me means so much. It would hurt me greatly if one of them was sad and not focusing on living their life because they were worried for me. A little worry from time to time, when going through a tough period is fine, but as you have stated you are consumed by some very sad thoughts. I am sure your brother does not want that for you.

So how does one get passed these thoughts of gloom and doom? Well, I am sure you will hear many ways from people on this forum because they care and understand what you are going through. For me, it was when I had the rest of my left lung taken out due to chronic hemoptysis, 7 1/2 years ago, that I truly had to face my mortality head on. It was then that the full impact of this disease really hit me. So what did I do? Well, I had a nice talk with God on the way into the operation room, nothing like waiting for the last minute...LOL. That was something that I had done only superficially before then and I told God that if I lived through this surgery I would really like to get to know him better and to introduce him to my family. The moment I woke up from my surgery I remembered my promise and have been living it ever since. Many wonderful things have happened in my life and I can actually say that many blessing have been revealed to me that have come about because of my cf. Every morning I wake up giving all I have, including my fears, to God and pledge to use the gifts he has given me to do His Will. My faith in God has brought me peace, great peace, hope and purpose.

I hope others (siblings and cfer's) will respond as to how they cope and live with this situation in their own lives. Please keep posting and letting us know how you are doing. We care and want to support you.<img src="i/expressions/heart.gif" border="0">

I will keep you and your brother in prayer.

Jem · Jan 14, 2007

Go ahead...SCREAM, SCREAM SCREAM!!! You deserve it! Scream till you can't scream anymore. Then get on with living life. Try to look at all the blessings you have and that your brother has. Just being alive is a blessing. No one really wants to think about dying or how one will die but we can very easily get into a cycle where we waste many today's if we are consumed by these thoughts.

I live in the moment, this minute, this hour, this post that I am writing to you. It is in living and focusing in this moment that I do not let thoughts of tomorrow consume me. I do what I have to do to stay healthy. I don't like having to take the time each day to do my meds, exercise and vest treatments but I do it and try to find a way to make it more satisfying. I use the time to come visit on this forum, write emails to friends and do research on various topics. I am doing my vest treatment as I write this to you.

You sound like a very caring person and your brother is fortunate to have you. Please do not think that as a relative you cannot do anything for your brother. I have 4 siblings, one with cf who is 4 years older than me. They love me and just knowing that if I needed something, anything, that they would be there for me means so much. It would hurt me greatly if one of them was sad and not focusing on living their life because they were worried for me. A little worry from time to time, when going through a tough period is fine, but as you have stated you are consumed by some very sad thoughts. I am sure your brother does not want that for you.

So how does one get passed these thoughts of gloom and doom? Well, I am sure you will hear many ways from people on this forum because they care and understand what you are going through. For me, it was when I had the rest of my left lung taken out due to chronic hemoptysis, 7 1/2 years ago, that I truly had to face my mortality head on. It was then that the full impact of this disease really hit me. So what did I do? Well, I had a nice talk with God on the way into the operation room, nothing like waiting for the last minute...LOL. That was something that I had done only superficially before then and I told God that if I lived through this surgery I would really like to get to know him better and to introduce him to my family. The moment I woke up from my surgery I remembered my promise and have been living it ever since. Many wonderful things have happened in my life and I can actually say that many blessing have been revealed to me that have come about because of my cf. Every morning I wake up giving all I have, including my fears, to God and pledge to use the gifts he has given me to do His Will. My faith in God has brought me peace, great peace, hope and purpose.

I hope others (siblings and cfer's) will respond as to how they cope and live with this situation in their own lives. Please keep posting and letting us know how you are doing. We care and want to support you.<img src="i/expressions/heart.gif" border="0">

I will keep you and your brother in prayer.

Jem · Jan 14, 2007

Go ahead...SCREAM, SCREAM SCREAM!!! You deserve it! Scream till you can't scream anymore. Then get on with living life. Try to look at all the blessings you have and that your brother has. Just being alive is a blessing. No one really wants to think about dying or how one will die but we can very easily get into a cycle where we waste many today's if we are consumed by these thoughts.

I live in the moment, this minute, this hour, this post that I am writing to you. It is in living and focusing in this moment that I do not let thoughts of tomorrow consume me. I do what I have to do to stay healthy. I don't like having to take the time each day to do my meds, exercise and vest treatments but I do it and try to find a way to make it more satisfying. I use the time to come visit on this forum, write emails to friends and do research on various topics. I am doing my vest treatment as I write this to you.

You sound like a very caring person and your brother is fortunate to have you. Please do not think that as a relative you cannot do anything for your brother. I have 4 siblings, one with cf who is 4 years older than me. They love me and just knowing that if I needed something, anything, that they would be there for me means so much. It would hurt me greatly if one of them was sad and not focusing on living their life because they were worried for me. A little worry from time to time, when going through a tough period is fine, but as you have stated you are consumed by some very sad thoughts. I am sure your brother does not want that for you.

So how does one get passed these thoughts of gloom and doom? Well, I am sure you will hear many ways from people on this forum because they care and understand what you are going through. For me, it was when I had the rest of my left lung taken out due to chronic hemoptysis, 7 1/2 years ago, that I truly had to face my mortality head on. It was then that the full impact of this disease really hit me. So what did I do? Well, I had a nice talk with God on the way into the operation room, nothing like waiting for the last minute...LOL. That was something that I had done only superficially before then and I told God that if I lived through this surgery I would really like to get to know him better and to introduce him to my family. The moment I woke up from my surgery I remembered my promise and have been living it ever since. Many wonderful things have happened in my life and I can actually say that many blessing have been revealed to me that have come about because of my cf. Every morning I wake up giving all I have, including my fears, to God and pledge to use the gifts he has given me to do His Will. My faith in God has brought me peace, great peace, hope and purpose.

I hope others (siblings and cfer's) will respond as to how they cope and live with this situation in their own lives. Please keep posting and letting us know how you are doing. We care and want to support you.<img src="i/expressions/heart.gif" border="0">

I will keep you and your brother in prayer.

relat · Jan 14, 2007

? really don't know what to write to you after this great post of you.I want to thank you for the deep of my heart for teaching me a very good lesson through your post and your life.I feel that whatever i write now does not deserve anything at all.Because you all cfers are the most powerful people in the world!You are very right to say that life is a blessing and we must thank God all the time for this gift and all the good times we have.There are though times you feel helpless and can not live normally.I try to understand what cfers pass through every day but I think only you(cfers) know as only you know what life deserves,we the others don't really know.

Your post touched me so much...and reminded me the positive side of life. I hardly can keep my tears..........
It is very important for me to know that at the other side of the Atlantic ocean there are real friends who want to help from their heart..
I may live in Greece,but I want you to know that I am here for you too every time you want anything.I would write more to you if my english was better,but what really deserves is that I feel you so near me.
God has surely blessed all cfers and power that common people will never have even if they try hard.

I wish God gives you and all cfers all the goods....

Nice to meet you!

relat,27, having a brother w/cf,26.

relat · Jan 14, 2007

? really don't know what to write to you after this great post of you.I want to thank you for the deep of my heart for teaching me a very good lesson through your post and your life.I feel that whatever i write now does not deserve anything at all.Because you all cfers are the most powerful people in the world!You are very right to say that life is a blessing and we must thank God all the time for this gift and all the good times we have.There are though times you feel helpless and can not live normally.I try to understand what cfers pass through every day but I think only you(cfers) know as only you know what life deserves,we the others don't really know.

Your post touched me so much...and reminded me the positive side of life. I hardly can keep my tears..........
It is very important for me to know that at the other side of the Atlantic ocean there are real friends who want to help from their heart..
I may live in Greece,but I want you to know that I am here for you too every time you want anything.I would write more to you if my english was better,but what really deserves is that I feel you so near me.
God has surely blessed all cfers and power that common people will never have even if they try hard.

I wish God gives you and all cfers all the goods....

Nice to meet you!

relat,27, having a brother w/cf,26.

relat · Jan 14, 2007

? really don't know what to write to you after this great post of you.I want to thank you for the deep of my heart for teaching me a very good lesson through your post and your life.I feel that whatever i write now does not deserve anything at all.Because you all cfers are the most powerful people in the world!You are very right to say that life is a blessing and we must thank God all the time for this gift and all the good times we have.There are though times you feel helpless and can not live normally.I try to understand what cfers pass through every day but I think only you(cfers) know as only you know what life deserves,we the others don't really know.

Your post touched me so much...and reminded me the positive side of life. I hardly can keep my tears..........
It is very important for me to know that at the other side of the Atlantic ocean there are real friends who want to help from their heart..
I may live in Greece,but I want you to know that I am here for you too every time you want anything.I would write more to you if my english was better,but what really deserves is that I feel you so near me.
God has surely blessed all cfers and power that common people will never have even if they try hard.

I wish God gives you and all cfers all the goods....

Nice to meet you!

relat,27, having a brother w/cf,26.

EnergyGal · Jan 14, 2007

I am just so touched by these two messages. That is what Forums are for. God Bless You both

EnergyGal · Jan 14, 2007

I am just so touched by these two messages. That is what Forums are for. God Bless You both

EnergyGal · Jan 14, 2007

I am just so touched by these two messages. That is what Forums are for. God Bless You both

coltsfan715 · Jan 14, 2007

That was a very touching post Jem. I have my talks with God as well when I have gone into surgery my prayer moments as I am wheeled into the room and as I am going under. They definitely have a way of putting you at ease <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I wanted to say to relat - I am able to see in every post you make the love you have for your brother. You are a very sensitive person and you seem to absorb the pain of others -obviously I have not met you but that is just what I gather from your posts about your brother.

I can not imagine what it is like to watch someone you love and care for go through the things that CFers have to go through - I KNOW it must be hard. I know it is hard sometimes to go through, but I know for me it is something that has to be done so I just try to move on from the disappointment as quickly as possible.

I agree with Jem - you have to focus on the blessings you have everyday. Live in the moment and rejoice in the things you can do and enjoy instead of sulking in the thoughts of what you can not do. Living in the shadow of what you are unable to do or living in the thoughts of what your brother is not able to do will limit your happiness greatly. There are SO SO SO many things in this world to find happiness from that even though there are things you maybe can't do that would make you happy there should be just as many things you can do to make you happy as well. Find what you can do with your brother and do it - rejoice in the little things. Rejoice in the fact that you may be able to go to lunch with him on the weekends or that you may be able to go to a movie or shopping with him for a few hours OR just sit around and play games at home or watch TV.

When your abilities change in life your happiness doesn't have to - you just have to readjust the way with which you live. Kind of like binoculars - you constantly have to adjust the lenses to stay focused - as the distance between you and the object you are looking at changes. As your health changes you will have to make adjustments to things - adjust maybe how long you stay out, what things you do for fun, where you go for fun and so on. But once things are readjusted everything becomes clearer. Sometimes it takes longer than others to readjust the things in your life - especially when everything seems to be changing so fast and it seems like SO much has changed (but things will settle down).

I hope that you are able to find peace and joy in the everyday. I hope that you are able to step back and breathe and relax when the anxiety seems to be too much and I hope that you are able to live your life the way you did before your brother was diagnosed.

Take Care,
Lindsey

PS - I will add a thought that has helped me when I have been bummed out about some diagnosis's that I have received. The situation was the same before the diagnosis NOW the problem simply has a name and possibly a treatment. Before your brother was not diagnosed with CF and that was great, but he still had CF you just did not know it. You lived happily then and were able to take life day by day - what has changed other than the fact that his health problems now have a name. Even if it wasn't labelled as CF he would still have the same health problems (just a thought).

Take Care <img src="i/expressions/face-icon-small-smile.gif" border="0">

coltsfan715 · Jan 14, 2007

That was a very touching post Jem. I have my talks with God as well when I have gone into surgery my prayer moments as I am wheeled into the room and as I am going under. They definitely have a way of putting you at ease <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I wanted to say to relat - I am able to see in every post you make the love you have for your brother. You are a very sensitive person and you seem to absorb the pain of others -obviously I have not met you but that is just what I gather from your posts about your brother.

I can not imagine what it is like to watch someone you love and care for go through the things that CFers have to go through - I KNOW it must be hard. I know it is hard sometimes to go through, but I know for me it is something that has to be done so I just try to move on from the disappointment as quickly as possible.

I agree with Jem - you have to focus on the blessings you have everyday. Live in the moment and rejoice in the things you can do and enjoy instead of sulking in the thoughts of what you can not do. Living in the shadow of what you are unable to do or living in the thoughts of what your brother is not able to do will limit your happiness greatly. There are SO SO SO many things in this world to find happiness from that even though there are things you maybe can't do that would make you happy there should be just as many things you can do to make you happy as well. Find what you can do with your brother and do it - rejoice in the little things. Rejoice in the fact that you may be able to go to lunch with him on the weekends or that you may be able to go to a movie or shopping with him for a few hours OR just sit around and play games at home or watch TV.

When your abilities change in life your happiness doesn't have to - you just have to readjust the way with which you live. Kind of like binoculars - you constantly have to adjust the lenses to stay focused - as the distance between you and the object you are looking at changes. As your health changes you will have to make adjustments to things - adjust maybe how long you stay out, what things you do for fun, where you go for fun and so on. But once things are readjusted everything becomes clearer. Sometimes it takes longer than others to readjust the things in your life - especially when everything seems to be changing so fast and it seems like SO much has changed (but things will settle down).

I hope that you are able to find peace and joy in the everyday. I hope that you are able to step back and breathe and relax when the anxiety seems to be too much and I hope that you are able to live your life the way you did before your brother was diagnosed.

Take Care,
Lindsey

PS - I will add a thought that has helped me when I have been bummed out about some diagnosis's that I have received. The situation was the same before the diagnosis NOW the problem simply has a name and possibly a treatment. Before your brother was not diagnosed with CF and that was great, but he still had CF you just did not know it. You lived happily then and were able to take life day by day - what has changed other than the fact that his health problems now have a name. Even if it wasn't labelled as CF he would still have the same health problems (just a thought).

Take Care <img src="i/expressions/face-icon-small-smile.gif" border="0">

coltsfan715 · Jan 14, 2007

That was a very touching post Jem. I have my talks with God as well when I have gone into surgery my prayer moments as I am wheeled into the room and as I am going under. They definitely have a way of putting you at ease <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I wanted to say to relat - I am able to see in every post you make the love you have for your brother. You are a very sensitive person and you seem to absorb the pain of others -obviously I have not met you but that is just what I gather from your posts about your brother.

I can not imagine what it is like to watch someone you love and care for go through the things that CFers have to go through - I KNOW it must be hard. I know it is hard sometimes to go through, but I know for me it is something that has to be done so I just try to move on from the disappointment as quickly as possible.

I agree with Jem - you have to focus on the blessings you have everyday. Live in the moment and rejoice in the things you can do and enjoy instead of sulking in the thoughts of what you can not do. Living in the shadow of what you are unable to do or living in the thoughts of what your brother is not able to do will limit your happiness greatly. There are SO SO SO many things in this world to find happiness from that even though there are things you maybe can't do that would make you happy there should be just as many things you can do to make you happy as well. Find what you can do with your brother and do it - rejoice in the little things. Rejoice in the fact that you may be able to go to lunch with him on the weekends or that you may be able to go to a movie or shopping with him for a few hours OR just sit around and play games at home or watch TV.

When your abilities change in life your happiness doesn't have to - you just have to readjust the way with which you live. Kind of like binoculars - you constantly have to adjust the lenses to stay focused - as the distance between you and the object you are looking at changes. As your health changes you will have to make adjustments to things - adjust maybe how long you stay out, what things you do for fun, where you go for fun and so on. But once things are readjusted everything becomes clearer. Sometimes it takes longer than others to readjust the things in your life - especially when everything seems to be changing so fast and it seems like SO much has changed (but things will settle down).

I hope that you are able to find peace and joy in the everyday. I hope that you are able to step back and breathe and relax when the anxiety seems to be too much and I hope that you are able to live your life the way you did before your brother was diagnosed.

Take Care,
Lindsey

PS - I will add a thought that has helped me when I have been bummed out about some diagnosis's that I have received. The situation was the same before the diagnosis NOW the problem simply has a name and possibly a treatment. Before your brother was not diagnosed with CF and that was great, but he still had CF you just did not know it. You lived happily then and were able to take life day by day - what has changed other than the fact that his health problems now have a name. Even if it wasn't labelled as CF he would still have the same health problems (just a thought).

Take Care <img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Jan 14, 2007

Oh Relat, I feel for your situation. I can feel how much you care for your brother, and i wish there was more we could do for you than just mere words, but unfortunately all we can offer is words of wisdom and support. I agree with Jem about remembering that he is alive, and what time he and you have shouldnt be wasted worrying. Life is short even for perfectly healthy people. People with cf tend to live out their dreams a lot faster than healthy people, because we don't take time for granted. Most people live their lives like they have the rest of their lives to do it. We with cf, tend to realized how precious life can really be. You having a brother with cf also realize life can be precious, and instead of worrying about what COULD happen to him, try to focus on making THIS day count. Each day is a gift, treat it like you would any gift....unwrap it with a smile, enjoy it while you have it, and cherish the memories you get out of it. Its only perfectly normal to have days where you have sadness and worries, we wouldnt be human without them. I will keep you and your brother and your family in my prayers. PLease let us know how things are going.............we do care <img src="i/expressions/heart.gif" border="0">

Diane · Jan 14, 2007

Oh Relat, I feel for your situation. I can feel how much you care for your brother, and i wish there was more we could do for you than just mere words, but unfortunately all we can offer is words of wisdom and support. I agree with Jem about remembering that he is alive, and what time he and you have shouldnt be wasted worrying. Life is short even for perfectly healthy people. People with cf tend to live out their dreams a lot faster than healthy people, because we don't take time for granted. Most people live their lives like they have the rest of their lives to do it. We with cf, tend to realized how precious life can really be. You having a brother with cf also realize life can be precious, and instead of worrying about what COULD happen to him, try to focus on making THIS day count. Each day is a gift, treat it like you would any gift....unwrap it with a smile, enjoy it while you have it, and cherish the memories you get out of it. Its only perfectly normal to have days where you have sadness and worries, we wouldnt be human without them. I will keep you and your brother and your family in my prayers. PLease let us know how things are going.............we do care <img src="i/expressions/heart.gif" border="0">

Diane · Jan 14, 2007

Oh Relat, I feel for your situation. I can feel how much you care for your brother, and i wish there was more we could do for you than just mere words, but unfortunately all we can offer is words of wisdom and support. I agree with Jem about remembering that he is alive, and what time he and you have shouldnt be wasted worrying. Life is short even for perfectly healthy people. People with cf tend to live out their dreams a lot faster than healthy people, because we don't take time for granted. Most people live their lives like they have the rest of their lives to do it. We with cf, tend to realized how precious life can really be. You having a brother with cf also realize life can be precious, and instead of worrying about what COULD happen to him, try to focus on making THIS day count. Each day is a gift, treat it like you would any gift....unwrap it with a smile, enjoy it while you have it, and cherish the memories you get out of it. Its only perfectly normal to have days where you have sadness and worries, we wouldnt be human without them. I will keep you and your brother and your family in my prayers. PLease let us know how things are going.............we do care <img src="i/expressions/heart.gif" border="0">

relat · Jan 14, 2007

thanks for your deep thinking messages Coltsfan715,Diane,and Risa for your wishes.I agree with trying to live life ang enjoy the good times it has.What pains in my case is that i never had much time with my brother,because i was studying and living away,not at my parents where my brother lives.Before the diagnosis there where not many health problems that my brother had to go through,after the diagnosis the psychological factor made things worse and of course the cf that progresses with the age(now he has diabetes etc).It is more difficult to live away(i am still away)from him,you feel like you can not control things.One the other hand,when i go home we puss my brother many times to do therapies,we discuss all day sometimes about cf and make him be anxious(me and my parents)so we make him afraid sometimes.But he also is not adjusted with his cf completely i think,he does not do all his therapies,and that makes me anxious and then i puss him etc.Some days ago i made him ask doctor how to clean mucus and he bought a nebulizer,i told him to buy the vest too,and he said another time.It's all these things that make me be anxious,and the site helps,although i feel it puts anxiety sometimes .

All the best,

relat.

relat · Jan 14, 2007

thanks for your deep thinking messages Coltsfan715,Diane,and Risa for your wishes.I agree with trying to live life ang enjoy the good times it has.What pains in my case is that i never had much time with my brother,because i was studying and living away,not at my parents where my brother lives.Before the diagnosis there where not many health problems that my brother had to go through,after the diagnosis the psychological factor made things worse and of course the cf that progresses with the age(now he has diabetes etc).It is more difficult to live away(i am still away)from him,you feel like you can not control things.One the other hand,when i go home we puss my brother many times to do therapies,we discuss all day sometimes about cf and make him be anxious(me and my parents)so we make him afraid sometimes.But he also is not adjusted with his cf completely i think,he does not do all his therapies,and that makes me anxious and then i puss him etc.Some days ago i made him ask doctor how to clean mucus and he bought a nebulizer,i told him to buy the vest too,and he said another time.It's all these things that make me be anxious,and the site helps,although i feel it puts anxiety sometimes .

All the best,

relat.

i want to scream..

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