CF and risky behaviors (and a personal story of my sister)

E

entropy

Guest
@ falloutboygurl16

My mother treated us like "sick children" growing up. Our CF was like the pink elephant in the room. Naturally little kids don't want to feel isolated like that. We put up defense mechanisms and tried to hide our CF to seem more normal because we were always made to feel that we weren't normal. As I get older I despise people who take such lengths to seem "normal." Especially in the media, it's so twisted and backwards. Last time I was in the hospital my room's TV was stuck on MTV. I kept waking up out of sedation in the middle of the night to these twisted reality shows about people that live in Las Vegas or something whose sole purpose in life is seemingly to make others think they're adequate. There I was, intubated, watching a guy with a mohawk have a nervous breakdown over what kind of purse he was going to buy. I was vicariously living life through this program, forced to watch this garbage, too sedated to know how to change the channel. My only emotion was pure disgust. These guys have their health, are blessed with longevity so long as they don't do anything too radical like become addicted to drugs or commit suicide. They take their health for granted and wrap themselves up into this cocoon of artificial happiness derived from meaningless substance like a purse that others like them will envy. I realized that without your health, you have nothing. You're a vegetable, good for nothing, relying on nurses to change your diaper and clean your excrement. The kind of people on those "reality" TV shows don't realize that. Everyone who is born has the burden of losing their health eventually, whether it be from old age or a disease. Only people who die unexpectedly in accidents, like car wrecks and such, bypass this fate. At the end of it all, what do they have? A collection of nice shoes and purses? Do they have a loving family or meaningful friends? While in the hospital, I was alone a lot of the time. My parents work and live hours away from that hospital. Some times I would have a caring nurse who would rub my shoulder or take my hand and talk. I realized that this was what life is about; to be touched, to know someone cares. Empathy, compassion, affection. All of the material possessions in the world mean nothing if you're alone. People lose touch with REALITY. Before all of our modern conveniences and technology all humans had was their family and friends. Society is so backwards now, in the face of all of this "progress" we are becoming more and more isolated, dooming ourselves to an unfulfilling and regretful end. In some ways I'm glad that I have CF. At a young age I have gone through a lot, respectively, and I've been shown things that are supposed to remain hidden until one truly realizes the value of life through time and life experience. People with CF are forced to live their lives faster than the average healthy person.

@ MaksNana

Sorry if you find my picture spooky. The first time I saw this picture it struck me as powerful. For me, it left an impression of angst, rage, and sorrow. I think it's a powerful image, spooky or not :)

My sister was the most gentle soul I've ever met. Only the good or really bad die young, and she truly a good person. I hope that, in some way, her story can help someone in a similar condition realize what harm they're doing to themselves and the pain they will put their family through at the end of it all.

Sorry for such a long rant at the beginning. One thing led to another.
 
E

entropy

Guest
@ falloutboygurl16
<br />
<br />My mother treated us like "sick children" growing up. Our CF was like the pink elephant in the room. Naturally little kids don't want to feel isolated like that. We put up defense mechanisms and tried to hide our CF to seem more normal because we were always made to feel that we weren't normal. As I get older I despise people who take such lengths to seem "normal." Especially in the media, it's so twisted and backwards. Last time I was in the hospital my room's TV was stuck on MTV. I kept waking up out of sedation in the middle of the night to these twisted reality shows about people that live in Las Vegas or something whose sole purpose in life is seemingly to make others think they're adequate. There I was, intubated, watching a guy with a mohawk have a nervous breakdown over what kind of purse he was going to buy. I was vicariously living life through this program, forced to watch this garbage, too sedated to know how to change the channel. My only emotion was pure disgust. These guys have their health, are blessed with longevity so long as they don't do anything too radical like become addicted to drugs or commit suicide. They take their health for granted and wrap themselves up into this cocoon of artificial happiness derived from meaningless substance like a purse that others like them will envy. I realized that without your health, you have nothing. You're a vegetable, good for nothing, relying on nurses to change your diaper and clean your excrement. The kind of people on those "reality" TV shows don't realize that. Everyone who is born has the burden of losing their health eventually, whether it be from old age or a disease. Only people who die unexpectedly in accidents, like car wrecks and such, bypass this fate. At the end of it all, what do they have? A collection of nice shoes and purses? Do they have a loving family or meaningful friends? While in the hospital, I was alone a lot of the time. My parents work and live hours away from that hospital. Some times I would have a caring nurse who would rub my shoulder or take my hand and talk. I realized that this was what life is about; to be touched, to know someone cares. Empathy, compassion, affection. All of the material possessions in the world mean nothing if you're alone. People lose touch with REALITY. Before all of our modern conveniences and technology all humans had was their family and friends. Society is so backwards now, in the face of all of this "progress" we are becoming more and more isolated, dooming ourselves to an unfulfilling and regretful end. In some ways I'm glad that I have CF. At a young age I have gone through a lot, respectively, and I've been shown things that are supposed to remain hidden until one truly realizes the value of life through time and life experience. People with CF are forced to live their lives faster than the average healthy person.
<br />
<br />@ MaksNana
<br />
<br />Sorry if you find my picture spooky. The first time I saw this picture it struck me as powerful. For me, it left an impression of angst, rage, and sorrow. I think it's a powerful image, spooky or not :)
<br />
<br />My sister was the most gentle soul I've ever met. Only the good or really bad die young, and she truly a good person. I hope that, in some way, her story can help someone in a similar condition realize what harm they're doing to themselves and the pain they will put their family through at the end of it all.
<br />
<br />Sorry for such a long rant at the beginning. One thing led to another.
 

njetta00

New member
Hi, I visit this site often but never had become a member. I was born in 86 and was diagnosed with CF at a young age. Your sisters story touches me because it is very similar to what im going through right now.

We all know how CF makes you feel physically, so I dont think I need to go there. Mentally, I think it is very different for everyone. CF is a lot to handle, and when you add that to normal "life" situations and problems sometimes it can become hopeless. I did not have the best childhood, my father was a severe alcoholic and I watched my mother get beat regularly. They were divorced by the time I was 12. I feel exactly like you described your sister, I feel like a complete burden, and as such I dont take care of myself like I should. I would rather suffer coughing all night and not sleeping for days then ask for help. You could say I was insecure and a bit embarressed of my CF.

By the time high school came around, I experimented like every normal teenager does. Smoking pot and drinking mainly. It was never a big deal I thought because I was still getting good grades and had two jobs. At this time my CF was not a problem at all. I graduated in 04 and got a job in a bank. I live in South Florida. All was well until I was introduced to oxycontin. This one specific drug ruined my life completely. As soon as I snorted it the first time it was done. That was all I wanted, I cant explain really how it felt, the only way I could put it is I felt NORMAL for once...no pains, I felt happy and content and even had an energy boost to go through my day. The problems started when I couldnt get anymore. The withdrawals are hell, it felt like I was literally dying. I could not sleep for days, extremely fatigued and could not eat a cracker. And the depression was the worst I have ever felt. Well when you feel like that, you will do whatever it takes to feel better. Long story short, I ended up stealing from the bank I worked at. Took the money right out of the vault and left. I spent all the money (12,000) on oxycontin and when everyone I knew was dry I would smoke meth to avoid being dopesick. I lost my job, spent time in jail, went to two rehabs and now am on 4 years probation. Oh, and my CF was making everything ten times worse...the cough, the aches, I just wanted to die. This has gone on for the past 3-4 years. I am 24 now, I collect SSDI and moved back in with my parents. I am in and out of the hospital for pnemonia or GI obstructions. I dont even have a nebulizer. The hospital has me as a drug seeker, so getting care when I really am in pain is near impossible. I take things day by day but truthfully I have done this all to myself because I couldnt just deal with the fact that I have CF and it is something that I have to be proactive about. Everyone has something, diabites, herpes, hell I dont know. But we have CF. Thats life. Its our cross to bear. Its 4:45 AM right now, I cant sleep because Im coughing my brains out, and probably will go to the ER in a couple hours. If anyone has a scenario like mine, which I would assume is a pretty bad scenario, please share. I would sincerely appreciate it. I dont know anyone else with CF and have never met anyone with CF before. My name is Nick btw. Thanks.
 

njetta00

New member
Hi, I visit this site often but never had become a member. I was born in 86 and was diagnosed with CF at a young age. Your sisters story touches me because it is very similar to what im going through right now.

We all know how CF makes you feel physically, so I dont think I need to go there. Mentally, I think it is very different for everyone. CF is a lot to handle, and when you add that to normal "life" situations and problems sometimes it can become hopeless. I did not have the best childhood, my father was a severe alcoholic and I watched my mother get beat regularly. They were divorced by the time I was 12. I feel exactly like you described your sister, I feel like a complete burden, and as such I dont take care of myself like I should. I would rather suffer coughing all night and not sleeping for days then ask for help. You could say I was insecure and a bit embarressed of my CF.

By the time high school came around, I experimented like every normal teenager does. Smoking pot and drinking mainly. It was never a big deal I thought because I was still getting good grades and had two jobs. At this time my CF was not a problem at all. I graduated in 04 and got a job in a bank. I live in South Florida. All was well until I was introduced to oxycontin. This one specific drug ruined my life completely. As soon as I snorted it the first time it was done. That was all I wanted, I cant explain really how it felt, the only way I could put it is I felt NORMAL for once...no pains, I felt happy and content and even had an energy boost to go through my day. The problems started when I couldnt get anymore. The withdrawals are hell, it felt like I was literally dying. I could not sleep for days, extremely fatigued and could not eat a cracker. And the depression was the worst I have ever felt. Well when you feel like that, you will do whatever it takes to feel better. Long story short, I ended up stealing from the bank I worked at. Took the money right out of the vault and left. I spent all the money (12,000) on oxycontin and when everyone I knew was dry I would smoke meth to avoid being dopesick. I lost my job, spent time in jail, went to two rehabs and now am on 4 years probation. Oh, and my CF was making everything ten times worse...the cough, the aches, I just wanted to die. This has gone on for the past 3-4 years. I am 24 now, I collect SSDI and moved back in with my parents. I am in and out of the hospital for pnemonia or GI obstructions. I dont even have a nebulizer. The hospital has me as a drug seeker, so getting care when I really am in pain is near impossible. I take things day by day but truthfully I have done this all to myself because I couldnt just deal with the fact that I have CF and it is something that I have to be proactive about. Everyone has something, diabites, herpes, hell I dont know. But we have CF. Thats life. Its our cross to bear. Its 4:45 AM right now, I cant sleep because Im coughing my brains out, and probably will go to the ER in a couple hours. If anyone has a scenario like mine, which I would assume is a pretty bad scenario, please share. I would sincerely appreciate it. I dont know anyone else with CF and have never met anyone with CF before. My name is Nick btw. Thanks.
 

njetta00

New member
Hi, I visit this site often but never had become a member. I was born in 86 and was diagnosed with CF at a young age. Your sisters story touches me because it is very similar to what im going through right now.
<br />
<br />We all know how CF makes you feel physically, so I dont think I need to go there. Mentally, I think it is very different for everyone. CF is a lot to handle, and when you add that to normal "life" situations and problems sometimes it can become hopeless. I did not have the best childhood, my father was a severe alcoholic and I watched my mother get beat regularly. They were divorced by the time I was 12. I feel exactly like you described your sister, I feel like a complete burden, and as such I dont take care of myself like I should. I would rather suffer coughing all night and not sleeping for days then ask for help. You could say I was insecure and a bit embarressed of my CF.
<br />
<br />By the time high school came around, I experimented like every normal teenager does. Smoking pot and drinking mainly. It was never a big deal I thought because I was still getting good grades and had two jobs. At this time my CF was not a problem at all. I graduated in 04 and got a job in a bank. I live in South Florida. All was well until I was introduced to oxycontin. This one specific drug ruined my life completely. As soon as I snorted it the first time it was done. That was all I wanted, I cant explain really how it felt, the only way I could put it is I felt NORMAL for once...no pains, I felt happy and content and even had an energy boost to go through my day. The problems started when I couldnt get anymore. The withdrawals are hell, it felt like I was literally dying. I could not sleep for days, extremely fatigued and could not eat a cracker. And the depression was the worst I have ever felt. Well when you feel like that, you will do whatever it takes to feel better. Long story short, I ended up stealing from the bank I worked at. Took the money right out of the vault and left. I spent all the money (12,000) on oxycontin and when everyone I knew was dry I would smoke meth to avoid being dopesick. I lost my job, spent time in jail, went to two rehabs and now am on 4 years probation. Oh, and my CF was making everything ten times worse...the cough, the aches, I just wanted to die. This has gone on for the past 3-4 years. I am 24 now, I collect SSDI and moved back in with my parents. I am in and out of the hospital for pnemonia or GI obstructions. I dont even have a nebulizer. The hospital has me as a drug seeker, so getting care when I really am in pain is near impossible. I take things day by day but truthfully I have done this all to myself because I couldnt just deal with the fact that I have CF and it is something that I have to be proactive about. Everyone has something, diabites, herpes, hell I dont know. But we have CF. Thats life. Its our cross to bear. Its 4:45 AM right now, I cant sleep because Im coughing my brains out, and probably will go to the ER in a couple hours. If anyone has a scenario like mine, which I would assume is a pretty bad scenario, please share. I would sincerely appreciate it. I dont know anyone else with CF and have never met anyone with CF before. My name is Nick btw. Thanks.
 
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