new here :) my story (in short)

rayoflight · Apr 2, 2010

hey everyone.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 20 years old and was dizgnosed with cf when I was two years old. I have an older brother who doesn't have cf. My childhood has been pretty good. I never understood what I have but I knew something was different. As I started growing up I started realizing what I have and really learning about my condition. Then I was scared to tell any of my friends what I have because I was scared they won't play and hang out with me if they knew. My lungs were pretty good when I was little because I was always active,running, walking, playing outside but when I was 11 I started having more problems, infections and so I began with daily inhalations. To this day no one except my parents and one friend has no idea about my condition. I now realize that people won't stop being my friends but I am afraid to tell them because of the fear that they will get angry that I've been keeping this as a secret for so long. I would always take my creons in secret and if they see me I would make a lie that those are the pills for my stomack or something else. Since the end of last year I started having panick attacks every time I thought something was wrong with me physically and those panick attacks became a chronic anxiety disorder which has so many awful symtoms that my life has been a hell. I even stopped eating and lost weight( which is of course very bad for us) but anxiety messes with your head so much that you can't function. I have a huge problem thats been bothering me for years now. I look "normal" physically, no one could say I am sick except my fingers are extremly clubbed and being a girl that really lowers my self-esteem. They are very clubbed and ugly to me and I am so ashamed of my hands that I hide them all the time.( and it's very hard to hide your hands.lol) And if someone notices them I get so emmbaressed and don't know what to say. In high school one boy noticed them and always bothered me to show them and used to ask me what wrong with me and told other people about my "freaky hands". I never had a boyfriend because I am so scared that no guy would ever want to be with someone who has these hands and disease. I dont think I am ugly and guys do like me but I just refuse them because I know that when they see my hands they will leave me, every man likes when a girl has a nice femenin hands. So not having someone to love and share my life with has been very depressive. I just think I will die alone from this disease and I wasn't even living. And anxiety has made me question my life,existance, everything, it makes you feel like you are losing your mind, I was so preocupied with my fears of becoming crazy that i even forgot about my condition. I am going to psychiatrist but its not very helpful. I also have no idea what I want to do in life. Dont know what to study and I know my time is ticking. I try looking for a job but I am young without experience so no one wants to hire me. I know this may seem like I am throwing myself a big pity party but despite everything I am really friendly, outgoing person who loves to laugh and make other people laugh but past 2,3 years have been really bad and anxiety has made me stay in my house most of time. I really want to meet someone who I can talk to about cf ( I never met anyone who has this problem,and at the doctors we are always separated) and problems that we face everyday. And if someone has anxiety or a similar problem and would like to chat. I hope someone has some advice or experience to share with me. This has been really hard for me, this is the first time I am opening up to someone about all this.
And sorry if my english is not very good, I am trying<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Apr 2, 2010

hey everyone.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 20 years old and was dizgnosed with cf when I was two years old. I have an older brother who doesn't have cf. My childhood has been pretty good. I never understood what I have but I knew something was different. As I started growing up I started realizing what I have and really learning about my condition. Then I was scared to tell any of my friends what I have because I was scared they won't play and hang out with me if they knew. My lungs were pretty good when I was little because I was always active,running, walking, playing outside but when I was 11 I started having more problems, infections and so I began with daily inhalations. To this day no one except my parents and one friend has no idea about my condition. I now realize that people won't stop being my friends but I am afraid to tell them because of the fear that they will get angry that I've been keeping this as a secret for so long. I would always take my creons in secret and if they see me I would make a lie that those are the pills for my stomack or something else. Since the end of last year I started having panick attacks every time I thought something was wrong with me physically and those panick attacks became a chronic anxiety disorder which has so many awful symtoms that my life has been a hell. I even stopped eating and lost weight( which is of course very bad for us) but anxiety messes with your head so much that you can't function. I have a huge problem thats been bothering me for years now. I look "normal" physically, no one could say I am sick except my fingers are extremly clubbed and being a girl that really lowers my self-esteem. They are very clubbed and ugly to me and I am so ashamed of my hands that I hide them all the time.( and it's very hard to hide your hands.lol) And if someone notices them I get so emmbaressed and don't know what to say. In high school one boy noticed them and always bothered me to show them and used to ask me what wrong with me and told other people about my "freaky hands". I never had a boyfriend because I am so scared that no guy would ever want to be with someone who has these hands and disease. I dont think I am ugly and guys do like me but I just refuse them because I know that when they see my hands they will leave me, every man likes when a girl has a nice femenin hands. So not having someone to love and share my life with has been very depressive. I just think I will die alone from this disease and I wasn't even living. And anxiety has made me question my life,existance, everything, it makes you feel like you are losing your mind, I was so preocupied with my fears of becoming crazy that i even forgot about my condition. I am going to psychiatrist but its not very helpful. I also have no idea what I want to do in life. Dont know what to study and I know my time is ticking. I try looking for a job but I am young without experience so no one wants to hire me. I know this may seem like I am throwing myself a big pity party but despite everything I am really friendly, outgoing person who loves to laugh and make other people laugh but past 2,3 years have been really bad and anxiety has made me stay in my house most of time. I really want to meet someone who I can talk to about cf ( I never met anyone who has this problem,and at the doctors we are always separated) and problems that we face everyday. And if someone has anxiety or a similar problem and would like to chat. I hope someone has some advice or experience to share with me. This has been really hard for me, this is the first time I am opening up to someone about all this.
And sorry if my english is not very good, I am trying<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Apr 2, 2010

hey everyone.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 20 years old and was dizgnosed with cf when I was two years old. I have an older brother who doesn't have cf. My childhood has been pretty good. I never understood what I have but I knew something was different. As I started growing up I started realizing what I have and really learning about my condition. Then I was scared to tell any of my friends what I have because I was scared they won't play and hang out with me if they knew. My lungs were pretty good when I was little because I was always active,running, walking, playing outside but when I was 11 I started having more problems, infections and so I began with daily inhalations. To this day no one except my parents and one friend has no idea about my condition. I now realize that people won't stop being my friends but I am afraid to tell them because of the fear that they will get angry that I've been keeping this as a secret for so long. I would always take my creons in secret and if they see me I would make a lie that those are the pills for my stomack or something else. Since the end of last year I started having panick attacks every time I thought something was wrong with me physically and those panick attacks became a chronic anxiety disorder which has so many awful symtoms that my life has been a hell. I even stopped eating and lost weight( which is of course very bad for us) but anxiety messes with your head so much that you can't function. I have a huge problem thats been bothering me for years now. I look "normal" physically, no one could say I am sick except my fingers are extremly clubbed and being a girl that really lowers my self-esteem. They are very clubbed and ugly to me and I am so ashamed of my hands that I hide them all the time.( and it's very hard to hide your hands.lol) And if someone notices them I get so emmbaressed and don't know what to say. In high school one boy noticed them and always bothered me to show them and used to ask me what wrong with me and told other people about my "freaky hands". I never had a boyfriend because I am so scared that no guy would ever want to be with someone who has these hands and disease. I dont think I am ugly and guys do like me but I just refuse them because I know that when they see my hands they will leave me, every man likes when a girl has a nice femenin hands. So not having someone to love and share my life with has been very depressive. I just think I will die alone from this disease and I wasn't even living. And anxiety has made me question my life,existance, everything, it makes you feel like you are losing your mind, I was so preocupied with my fears of becoming crazy that i even forgot about my condition. I am going to psychiatrist but its not very helpful. I also have no idea what I want to do in life. Dont know what to study and I know my time is ticking. I try looking for a job but I am young without experience so no one wants to hire me. I know this may seem like I am throwing myself a big pity party but despite everything I am really friendly, outgoing person who loves to laugh and make other people laugh but past 2,3 years have been really bad and anxiety has made me stay in my house most of time. I really want to meet someone who I can talk to about cf ( I never met anyone who has this problem,and at the doctors we are always separated) and problems that we face everyday. And if someone has anxiety or a similar problem and would like to chat. I hope someone has some advice or experience to share with me. This has been really hard for me, this is the first time I am opening up to someone about all this.
And sorry if my english is not very good, I am trying<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Apr 2, 2010

hey everyone.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 20 years old and was dizgnosed with cf when I was two years old. I have an older brother who doesn't have cf. My childhood has been pretty good. I never understood what I have but I knew something was different. As I started growing up I started realizing what I have and really learning about my condition. Then I was scared to tell any of my friends what I have because I was scared they won't play and hang out with me if they knew. My lungs were pretty good when I was little because I was always active,running, walking, playing outside but when I was 11 I started having more problems, infections and so I began with daily inhalations. To this day no one except my parents and one friend has no idea about my condition. I now realize that people won't stop being my friends but I am afraid to tell them because of the fear that they will get angry that I've been keeping this as a secret for so long. I would always take my creons in secret and if they see me I would make a lie that those are the pills for my stomack or something else. Since the end of last year I started having panick attacks every time I thought something was wrong with me physically and those panick attacks became a chronic anxiety disorder which has so many awful symtoms that my life has been a hell. I even stopped eating and lost weight( which is of course very bad for us) but anxiety messes with your head so much that you can't function. I have a huge problem thats been bothering me for years now. I look "normal" physically, no one could say I am sick except my fingers are extremly clubbed and being a girl that really lowers my self-esteem. They are very clubbed and ugly to me and I am so ashamed of my hands that I hide them all the time.( and it's very hard to hide your hands.lol) And if someone notices them I get so emmbaressed and don't know what to say. In high school one boy noticed them and always bothered me to show them and used to ask me what wrong with me and told other people about my "freaky hands". I never had a boyfriend because I am so scared that no guy would ever want to be with someone who has these hands and disease. I dont think I am ugly and guys do like me but I just refuse them because I know that when they see my hands they will leave me, every man likes when a girl has a nice femenin hands. So not having someone to love and share my life with has been very depressive. I just think I will die alone from this disease and I wasn't even living. And anxiety has made me question my life,existance, everything, it makes you feel like you are losing your mind, I was so preocupied with my fears of becoming crazy that i even forgot about my condition. I am going to psychiatrist but its not very helpful. I also have no idea what I want to do in life. Dont know what to study and I know my time is ticking. I try looking for a job but I am young without experience so no one wants to hire me. I know this may seem like I am throwing myself a big pity party but despite everything I am really friendly, outgoing person who loves to laugh and make other people laugh but past 2,3 years have been really bad and anxiety has made me stay in my house most of time. I really want to meet someone who I can talk to about cf ( I never met anyone who has this problem,and at the doctors we are always separated) and problems that we face everyday. And if someone has anxiety or a similar problem and would like to chat. I hope someone has some advice or experience to share with me. This has been really hard for me, this is the first time I am opening up to someone about all this.
And sorry if my english is not very good, I am trying<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Apr 2, 2010

hey everyone.<img src="i/expressions/face-icon-small-smile.gif" border="0"> I am 20 years old and was dizgnosed with cf when I was two years old. I have an older brother who doesn't have cf. My childhood has been pretty good. I never understood what I have but I knew something was different. As I started growing up I started realizing what I have and really learning about my condition. Then I was scared to tell any of my friends what I have because I was scared they won't play and hang out with me if they knew. My lungs were pretty good when I was little because I was always active,running, walking, playing outside but when I was 11 I started having more problems, infections and so I began with daily inhalations. To this day no one except my parents and one friend has no idea about my condition. I now realize that people won't stop being my friends but I am afraid to tell them because of the fear that they will get angry that I've been keeping this as a secret for so long. I would always take my creons in secret and if they see me I would make a lie that those are the pills for my stomack or something else. Since the end of last year I started having panick attacks every time I thought something was wrong with me physically and those panick attacks became a chronic anxiety disorder which has so many awful symtoms that my life has been a hell. I even stopped eating and lost weight( which is of course very bad for us) but anxiety messes with your head so much that you can't function. I have a huge problem thats been bothering me for years now. I look "normal" physically, no one could say I am sick except my fingers are extremly clubbed and being a girl that really lowers my self-esteem. They are very clubbed and ugly to me and I am so ashamed of my hands that I hide them all the time.( and it's very hard to hide your hands.lol) And if someone notices them I get so emmbaressed and don't know what to say. In high school one boy noticed them and always bothered me to show them and used to ask me what wrong with me and told other people about my "freaky hands". I never had a boyfriend because I am so scared that no guy would ever want to be with someone who has these hands and disease. I dont think I am ugly and guys do like me but I just refuse them because I know that when they see my hands they will leave me, every man likes when a girl has a nice femenin hands. So not having someone to love and share my life with has been very depressive. I just think I will die alone from this disease and I wasn't even living. And anxiety has made me question my life,existance, everything, it makes you feel like you are losing your mind, I was so preocupied with my fears of becoming crazy that i even forgot about my condition. I am going to psychiatrist but its not very helpful. I also have no idea what I want to do in life. Dont know what to study and I know my time is ticking. I try looking for a job but I am young without experience so no one wants to hire me. I know this may seem like I am throwing myself a big pity party but despite everything I am really friendly, outgoing person who loves to laugh and make other people laugh but past 2,3 years have been really bad and anxiety has made me stay in my house most of time. I really want to meet someone who I can talk to about cf ( I never met anyone who has this problem,and at the doctors we are always separated) and problems that we face everyday. And if someone has anxiety or a similar problem and would like to chat. I hope someone has some advice or experience to share with me. This has been really hard for me, this is the first time I am opening up to someone about all this.
 And sorry if my english is not very good, I am trying<img src="i/expressions/face-icon-small-smile.gif" border="0">

Jana · Apr 2, 2010

Hi there,

I'm sorry to hear you're having such a difficult time. Living with cf is not an easy thing, and I think everyone on this site understands that you're facing some real issues. I can't make those go away, but I hope you'll be encouraged by talking to others here.

If I could make one suggestion? It sounds like your problems are made much greater by the situation of not sharing with those around you. That can be a tough thing, especially when you have gone on this way for years. However, it's been my experience that people are generally kind and supportive. It may take your friends a while to understand, but if you're honest with them about fear being the reason you have kept it to yourself, I think they'll be glad you shared and want to help.

The disease isn't going away, but work to take one step at a time toward life beyond the fears. You took the first step by posting this. Now how about trying to go one step further by telling one friend?

If I can help, feel free to PM me.

Jana · Apr 2, 2010

Hi there,

I'm sorry to hear you're having such a difficult time. Living with cf is not an easy thing, and I think everyone on this site understands that you're facing some real issues. I can't make those go away, but I hope you'll be encouraged by talking to others here.

If I could make one suggestion? It sounds like your problems are made much greater by the situation of not sharing with those around you. That can be a tough thing, especially when you have gone on this way for years. However, it's been my experience that people are generally kind and supportive. It may take your friends a while to understand, but if you're honest with them about fear being the reason you have kept it to yourself, I think they'll be glad you shared and want to help.

The disease isn't going away, but work to take one step at a time toward life beyond the fears. You took the first step by posting this. Now how about trying to go one step further by telling one friend?

If I can help, feel free to PM me.

Jana · Apr 2, 2010

Hi there,

I'm sorry to hear you're having such a difficult time. Living with cf is not an easy thing, and I think everyone on this site understands that you're facing some real issues. I can't make those go away, but I hope you'll be encouraged by talking to others here.

If I could make one suggestion? It sounds like your problems are made much greater by the situation of not sharing with those around you. That can be a tough thing, especially when you have gone on this way for years. However, it's been my experience that people are generally kind and supportive. It may take your friends a while to understand, but if you're honest with them about fear being the reason you have kept it to yourself, I think they'll be glad you shared and want to help.

The disease isn't going away, but work to take one step at a time toward life beyond the fears. You took the first step by posting this. Now how about trying to go one step further by telling one friend?

If I can help, feel free to PM me.

Jana · Apr 2, 2010

Hi there,

I'm sorry to hear you're having such a difficult time. Living with cf is not an easy thing, and I think everyone on this site understands that you're facing some real issues. I can't make those go away, but I hope you'll be encouraged by talking to others here.

If I could make one suggestion? It sounds like your problems are made much greater by the situation of not sharing with those around you. That can be a tough thing, especially when you have gone on this way for years. However, it's been my experience that people are generally kind and supportive. It may take your friends a while to understand, but if you're honest with them about fear being the reason you have kept it to yourself, I think they'll be glad you shared and want to help.

The disease isn't going away, but work to take one step at a time toward life beyond the fears. You took the first step by posting this. Now how about trying to go one step further by telling one friend?

If I can help, feel free to PM me.

Jana · Apr 2, 2010

Hi there,
 
 I'm sorry to hear you're having such a difficult time. Living with cf is not an easy thing, and I think everyone on this site understands that you're facing some real issues. I can't make those go away, but I hope you'll be encouraged by talking to others here.
 
 If I could make one suggestion? It sounds like your problems are made much greater by the situation of not sharing with those around you. That can be a tough thing, especially when you have gone on this way for years. However, it's been my experience that people are generally kind and supportive. It may take your friends a while to understand, but if you're honest with them about fear being the reason you have kept it to yourself, I think they'll be glad you shared and want to help.
 
 The disease isn't going away, but work to take one step at a time toward life beyond the fears. You took the first step by posting this. Now how about trying to go one step further by telling one friend?
 
 If I can help, feel free to PM me.

KarenEliz · Apr 3, 2010

I'm sorry you are going through so much. I had many of the same fears you had growing up and I never told anyone about my CF. The first time I ever got "sick" was is highschool so I never had reason to tell any of my friends. I did finally decide to tell them one by one in highschool and my fears were all for nothing. No one treated me any differently, or was angry for not telling them earlier. They were all very accepting and having them as part of my support system as I got older was very important to me. I'm now marries to a wonderful man, who cleans my nebs and helps me with my IV's when I'm on them. I have two beautiful children who are my world. I have gotten extremely comfortable with having CF and I don't try to hide it anymore. My friends all walk with me in Great Strides now. Taking the first step is the hardest, but once you have done it I think you will feel a weight lifted from your sholders. Feel free to PM me if you ever wanted to talk.

KarenEliz · Apr 3, 2010

I'm sorry you are going through so much. I had many of the same fears you had growing up and I never told anyone about my CF. The first time I ever got "sick" was is highschool so I never had reason to tell any of my friends. I did finally decide to tell them one by one in highschool and my fears were all for nothing. No one treated me any differently, or was angry for not telling them earlier. They were all very accepting and having them as part of my support system as I got older was very important to me. I'm now marries to a wonderful man, who cleans my nebs and helps me with my IV's when I'm on them. I have two beautiful children who are my world. I have gotten extremely comfortable with having CF and I don't try to hide it anymore. My friends all walk with me in Great Strides now. Taking the first step is the hardest, but once you have done it I think you will feel a weight lifted from your sholders. Feel free to PM me if you ever wanted to talk.

KarenEliz · Apr 3, 2010

I'm sorry you are going through so much. I had many of the same fears you had growing up and I never told anyone about my CF. The first time I ever got "sick" was is highschool so I never had reason to tell any of my friends. I did finally decide to tell them one by one in highschool and my fears were all for nothing. No one treated me any differently, or was angry for not telling them earlier. They were all very accepting and having them as part of my support system as I got older was very important to me. I'm now marries to a wonderful man, who cleans my nebs and helps me with my IV's when I'm on them. I have two beautiful children who are my world. I have gotten extremely comfortable with having CF and I don't try to hide it anymore. My friends all walk with me in Great Strides now. Taking the first step is the hardest, but once you have done it I think you will feel a weight lifted from your sholders. Feel free to PM me if you ever wanted to talk.

KarenEliz · Apr 3, 2010

I'm sorry you are going through so much. I had many of the same fears you had growing up and I never told anyone about my CF. The first time I ever got "sick" was is highschool so I never had reason to tell any of my friends. I did finally decide to tell them one by one in highschool and my fears were all for nothing. No one treated me any differently, or was angry for not telling them earlier. They were all very accepting and having them as part of my support system as I got older was very important to me. I'm now marries to a wonderful man, who cleans my nebs and helps me with my IV's when I'm on them. I have two beautiful children who are my world. I have gotten extremely comfortable with having CF and I don't try to hide it anymore. My friends all walk with me in Great Strides now. Taking the first step is the hardest, but once you have done it I think you will feel a weight lifted from your sholders. Feel free to PM me if you ever wanted to talk.

KarenEliz · Apr 3, 2010

I'm sorry you are going through so much. I had many of the same fears you had growing up and I never told anyone about my CF. The first time I ever got "sick" was is highschool so I never had reason to tell any of my friends. I did finally decide to tell them one by one in highschool and my fears were all for nothing. No one treated me any differently, or was angry for not telling them earlier. They were all very accepting and having them as part of my support system as I got older was very important to me. I'm now marries to a wonderful man, who cleans my nebs and helps me with my IV's when I'm on them. I have two beautiful children who are my world. I have gotten extremely comfortable with having CF and I don't try to hide it anymore. My friends all walk with me in Great Strides now. Taking the first step is the hardest, but once you have done it I think you will feel a weight lifted from your sholders. Feel free to PM me if you ever wanted to talk.

beleache · Apr 3, 2010

Hi & Welcome to the site..

I am sorry you are having such a tough time.. Many of us here have had anxiety/depression .. I think you made a good first step by reaching out to others.

I would imagine keeping your health issues a secret for so long has been very difficult.. Maybe talking to others here will give you the strength to open up to your friends..

Its good that you are seeking professional help, but if you feel it isn't helping you then maybe you should find another dr. Are you taking medication for the anxiety ? If not maybe you could discuss that possibility .

I hope that you get some answers that you are looking for. This site has been extremely helpful to me & I know to many others.

Take care <img src="i/expressions/heart.gif" border="0"> joni

PS Feel free to PM me if you want to...

beleache · Apr 3, 2010

Hi & Welcome to the site..

I am sorry you are having such a tough time.. Many of us here have had anxiety/depression .. I think you made a good first step by reaching out to others.

I would imagine keeping your health issues a secret for so long has been very difficult.. Maybe talking to others here will give you the strength to open up to your friends..

Its good that you are seeking professional help, but if you feel it isn't helping you then maybe you should find another dr. Are you taking medication for the anxiety ? If not maybe you could discuss that possibility .

I hope that you get some answers that you are looking for. This site has been extremely helpful to me & I know to many others.

Take care <img src="i/expressions/heart.gif" border="0"> joni

PS Feel free to PM me if you want to...

beleache · Apr 3, 2010

Hi & Welcome to the site..

I am sorry you are having such a tough time.. Many of us here have had anxiety/depression .. I think you made a good first step by reaching out to others.

I would imagine keeping your health issues a secret for so long has been very difficult.. Maybe talking to others here will give you the strength to open up to your friends..

Its good that you are seeking professional help, but if you feel it isn't helping you then maybe you should find another dr. Are you taking medication for the anxiety ? If not maybe you could discuss that possibility .

I hope that you get some answers that you are looking for. This site has been extremely helpful to me & I know to many others.

Take care <img src="i/expressions/heart.gif" border="0"> joni

PS Feel free to PM me if you want to...

beleache · Apr 3, 2010

Hi & Welcome to the site..

I am sorry you are having such a tough time.. Many of us here have had anxiety/depression .. I think you made a good first step by reaching out to others.

I would imagine keeping your health issues a secret for so long has been very difficult.. Maybe talking to others here will give you the strength to open up to your friends..

Its good that you are seeking professional help, but if you feel it isn't helping you then maybe you should find another dr. Are you taking medication for the anxiety ? If not maybe you could discuss that possibility .

I hope that you get some answers that you are looking for. This site has been extremely helpful to me & I know to many others.

Take care <img src="i/expressions/heart.gif" border="0"> joni

PS Feel free to PM me if you want to...

beleache · Apr 3, 2010

Hi & Welcome to the site..
 
 I am sorry you are having such a tough time.. Many of us here have had anxiety/depression .. I think you made a good first step by reaching out to others.
 
 I would imagine keeping your health issues a secret for so long has been very difficult.. Maybe talking to others here will give you the strength to open up to your friends..
 
 Its good that you are seeking professional help, but if you feel it isn't helping you then maybe you should find another dr. Are you taking medication for the anxiety ? If not maybe you could discuss that possibility .
 
 I hope that you get some answers that you are looking for. This site has been extremely helpful to me & I know to many others.
 
 Take care <img src="i/expressions/heart.gif" border="0"> joni
 
 PS Feel free to PM me if you want to...

new here :) my story (in short)

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