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

E

entropy

Guest
This topic is about people with CF who engage in risky behaviors like smoking, doing drugs, not doing treatments, etc.

My sister always did her treatments growing up (born in 86). Well, as a youngster my mother forced us to, perhaps to the point of going too far; I despised doing my treatments. We, in a way, kind of felt like "bubble children." My mother would always call our friend's parents and ask tell them we had CF, told them not to smoke, always made us come home to do our treatments twice a day. She always told people she met we had CF whether it mattered or not. I know she did it in our best interest, but it has definitely seemed to have negative ramifications on both of us.

When we hit our teen years, both me and my sister began experimenting with things most teenagers do; namely drinking, smoking pot, trying cigarettes (I never inhaled cig. smoke though my sister did). My sister was almost 4 years older than me, so I saw this progress from the standpoint of being 4 years behind her. We lived in Florida at the time, which is writhe with narcotics, cocaine, crack, etc. My sister met a guy across the street who was a druggy and they began dating much to my parent's behest. She was 18, though, so my parent's gave her the ultimatum of leaving him or getting kicked out. She chose to stay with him.

After about a year, we learned she was smoking crack every day and taking various pills whenever she could get her hands on them. I personally think she suffered from clinical depression and she was self medicating with these drugs. She was embarrassed about her CF, so she had her own personal vest put in storage.

Another year went by, some times she would show up at the door asking for a place to stay and my parent's let her back. Even so, she always ended up going back to her no good boyfriend. Soon enough she was going to the hospital every so often with pneumonia. She didn't have health insurance either. She wasn't taking her capsules, so she was emaciated. Emaciated as she was, her boyfriend still said she was fat.

Another year went by, and in June 08 we were moving back to Pennsylvania where we lived originally. She was going to come with us. Long story short, she ended up staying with her boyfriend and continued using crack and all sorts of other drugs. She was sent to the hospital for the last time after lying on the floor of her boyfriend's room for 2 weeks, unable to move, eat, or stand up because her lungs were so stiff. She went to the hospital in August and was intubated after a week or so. Progressively she became worse, starting with her liver, then her kidneys, then her heart, her lungs being at the center of all of these complications. She was severely malnourished, had rampant Pseudomonas a. infection as well as a fungal infection that we think came from the reptiles her boyfriend kept as "pets."

I thought she was going to get better, so I didn't go visit her at the hospital in Florida. We had literally just arrived in PA and were flat broke when we got the call about her being in the hospital. She passed away on Oct. 14th 08. The last time I talked to her, she couldn't talk back. I just told her we were all sending our thoughts to her, I told her to do whatever she had to do to get well and come home. I didn't know what else to say... I only was ever able to hang out with her one time as an adult, shortly before we left for PA. There is no doubt she would be alive if she had not done these drugs and did her treatments, took her capsules, went to the doc, etc. I know why she didn't do these things; #1, she was embarrassed, #2, she didn't want to be a burden on anybody, #3, she wanted to feel like she was normal.

Her death certificate read "death due to malnutrition and liver failure."
 
E

entropy

Guest
This topic is about people with CF who engage in risky behaviors like smoking, doing drugs, not doing treatments, etc.

My sister always did her treatments growing up (born in 86). Well, as a youngster my mother forced us to, perhaps to the point of going too far; I despised doing my treatments. We, in a way, kind of felt like "bubble children." My mother would always call our friend's parents and ask tell them we had CF, told them not to smoke, always made us come home to do our treatments twice a day. She always told people she met we had CF whether it mattered or not. I know she did it in our best interest, but it has definitely seemed to have negative ramifications on both of us.

When we hit our teen years, both me and my sister began experimenting with things most teenagers do; namely drinking, smoking pot, trying cigarettes (I never inhaled cig. smoke though my sister did). My sister was almost 4 years older than me, so I saw this progress from the standpoint of being 4 years behind her. We lived in Florida at the time, which is writhe with narcotics, cocaine, crack, etc. My sister met a guy across the street who was a druggy and they began dating much to my parent's behest. She was 18, though, so my parent's gave her the ultimatum of leaving him or getting kicked out. She chose to stay with him.

After about a year, we learned she was smoking crack every day and taking various pills whenever she could get her hands on them. I personally think she suffered from clinical depression and she was self medicating with these drugs. She was embarrassed about her CF, so she had her own personal vest put in storage.

Another year went by, some times she would show up at the door asking for a place to stay and my parent's let her back. Even so, she always ended up going back to her no good boyfriend. Soon enough she was going to the hospital every so often with pneumonia. She didn't have health insurance either. She wasn't taking her capsules, so she was emaciated. Emaciated as she was, her boyfriend still said she was fat.

Another year went by, and in June 08 we were moving back to Pennsylvania where we lived originally. She was going to come with us. Long story short, she ended up staying with her boyfriend and continued using crack and all sorts of other drugs. She was sent to the hospital for the last time after lying on the floor of her boyfriend's room for 2 weeks, unable to move, eat, or stand up because her lungs were so stiff. She went to the hospital in August and was intubated after a week or so. Progressively she became worse, starting with her liver, then her kidneys, then her heart, her lungs being at the center of all of these complications. She was severely malnourished, had rampant Pseudomonas a. infection as well as a fungal infection that we think came from the reptiles her boyfriend kept as "pets."

I thought she was going to get better, so I didn't go visit her at the hospital in Florida. We had literally just arrived in PA and were flat broke when we got the call about her being in the hospital. She passed away on Oct. 14th 08. The last time I talked to her, she couldn't talk back. I just told her we were all sending our thoughts to her, I told her to do whatever she had to do to get well and come home. I didn't know what else to say... I only was ever able to hang out with her one time as an adult, shortly before we left for PA. There is no doubt she would be alive if she had not done these drugs and did her treatments, took her capsules, went to the doc, etc. I know why she didn't do these things; #1, she was embarrassed, #2, she didn't want to be a burden on anybody, #3, she wanted to feel like she was normal.

Her death certificate read "death due to malnutrition and liver failure."
 
E

entropy

Guest
This topic is about people with CF who engage in risky behaviors like smoking, doing drugs, not doing treatments, etc.
<br />
<br />My sister always did her treatments growing up (born in 86). Well, as a youngster my mother forced us to, perhaps to the point of going too far; I despised doing my treatments. We, in a way, kind of felt like "bubble children." My mother would always call our friend's parents and ask tell them we had CF, told them not to smoke, always made us come home to do our treatments twice a day. She always told people she met we had CF whether it mattered or not. I know she did it in our best interest, but it has definitely seemed to have negative ramifications on both of us.
<br />
<br />When we hit our teen years, both me and my sister began experimenting with things most teenagers do; namely drinking, smoking pot, trying cigarettes (I never inhaled cig. smoke though my sister did). My sister was almost 4 years older than me, so I saw this progress from the standpoint of being 4 years behind her. We lived in Florida at the time, which is writhe with narcotics, cocaine, crack, etc. My sister met a guy across the street who was a druggy and they began dating much to my parent's behest. She was 18, though, so my parent's gave her the ultimatum of leaving him or getting kicked out. She chose to stay with him.
<br />
<br />After about a year, we learned she was smoking crack every day and taking various pills whenever she could get her hands on them. I personally think she suffered from clinical depression and she was self medicating with these drugs. She was embarrassed about her CF, so she had her own personal vest put in storage.
<br />
<br />Another year went by, some times she would show up at the door asking for a place to stay and my parent's let her back. Even so, she always ended up going back to her no good boyfriend. Soon enough she was going to the hospital every so often with pneumonia. She didn't have health insurance either. She wasn't taking her capsules, so she was emaciated. Emaciated as she was, her boyfriend still said she was fat.
<br />
<br />Another year went by, and in June 08 we were moving back to Pennsylvania where we lived originally. She was going to come with us. Long story short, she ended up staying with her boyfriend and continued using crack and all sorts of other drugs. She was sent to the hospital for the last time after lying on the floor of her boyfriend's room for 2 weeks, unable to move, eat, or stand up because her lungs were so stiff. She went to the hospital in August and was intubated after a week or so. Progressively she became worse, starting with her liver, then her kidneys, then her heart, her lungs being at the center of all of these complications. She was severely malnourished, had rampant Pseudomonas a. infection as well as a fungal infection that we think came from the reptiles her boyfriend kept as "pets."
<br />
<br />I thought she was going to get better, so I didn't go visit her at the hospital in Florida. We had literally just arrived in PA and were flat broke when we got the call about her being in the hospital. She passed away on Oct. 14th 08. The last time I talked to her, she couldn't talk back. I just told her we were all sending our thoughts to her, I told her to do whatever she had to do to get well and come home. I didn't know what else to say... I only was ever able to hang out with her one time as an adult, shortly before we left for PA. There is no doubt she would be alive if she had not done these drugs and did her treatments, took her capsules, went to the doc, etc. I know why she didn't do these things; #1, she was embarrassed, #2, she didn't want to be a burden on anybody, #3, she wanted to feel like she was normal.
<br />
<br />Her death certificate read "death due to malnutrition and liver failure."
 

LouLou

New member
What a sad story. Thank you for sharing. It will be an eye opener for at least one youngster I'm sure who thinks they can do whatever they please. My parents were always honest with me about how crack and coke, heroin etc. were not to be messed with. It's alwasy so hard to know how much guidance and when to reliquish control to the cfer should happen. I'm sure your parents have some regrets and carry a burden even though they shouldn't. She chose her own fate. Cf or not. Drugs can really screw up lives. Can you imagine how many sleepless nights your parents had because of her ridiculousness and illness. Just makes me ill. And to think she didn't want to be a burden? WTF??

Do you think if she had been moved from FL earlier it would have helped? Since parts are notorious for being a rough place to grow up.

What impact has her death had on your condition and outlook?

Do you think it's right that cf was left off her death certificate..sort of ironic eh?
 

LouLou

New member
What a sad story. Thank you for sharing. It will be an eye opener for at least one youngster I'm sure who thinks they can do whatever they please. My parents were always honest with me about how crack and coke, heroin etc. were not to be messed with. It's alwasy so hard to know how much guidance and when to reliquish control to the cfer should happen. I'm sure your parents have some regrets and carry a burden even though they shouldn't. She chose her own fate. Cf or not. Drugs can really screw up lives. Can you imagine how many sleepless nights your parents had because of her ridiculousness and illness. Just makes me ill. And to think she didn't want to be a burden? WTF??

Do you think if she had been moved from FL earlier it would have helped? Since parts are notorious for being a rough place to grow up.

What impact has her death had on your condition and outlook?

Do you think it's right that cf was left off her death certificate..sort of ironic eh?
 

LouLou

New member
What a sad story. Thank you for sharing. It will be an eye opener for at least one youngster I'm sure who thinks they can do whatever they please. My parents were always honest with me about how crack and coke, heroin etc. were not to be messed with. It's alwasy so hard to know how much guidance and when to reliquish control to the cfer should happen. I'm sure your parents have some regrets and carry a burden even though they shouldn't. She chose her own fate. Cf or not. Drugs can really screw up lives. Can you imagine how many sleepless nights your parents had because of her ridiculousness and illness. Just makes me ill. And to think she didn't want to be a burden? WTF??
<br />
<br />Do you think if she had been moved from FL earlier it would have helped? Since parts are notorious for being a rough place to grow up.
<br />
<br />What impact has her death had on your condition and outlook?
<br />
<br />Do you think it's right that cf was left off her death certificate..sort of ironic eh?
 

lilywing

New member
LouLou, as someone who struggles with addiction, I want to say that I don't think anyone "chooses" this fate. Now THAT would be "ridiculous". I know I didn't choose for my every thought and motivation to be controlled by alcohol. And as "ridiculous" as you might describe someone's behavior on the surface, I think it's important to recognize the very serious, very un-ridiculous reality of addiction. If someone is struggling, we might try to help them rather than label and judge.
Entropy, thank you for sharing this with us. This reminds me that I am not alone, and of how precious and fragile our lives can be.
 

lilywing

New member
LouLou, as someone who struggles with addiction, I want to say that I don't think anyone "chooses" this fate. Now THAT would be "ridiculous". I know I didn't choose for my every thought and motivation to be controlled by alcohol. And as "ridiculous" as you might describe someone's behavior on the surface, I think it's important to recognize the very serious, very un-ridiculous reality of addiction. If someone is struggling, we might try to help them rather than label and judge.
Entropy, thank you for sharing this with us. This reminds me that I am not alone, and of how precious and fragile our lives can be.
 

lilywing

New member
LouLou, as someone who struggles with addiction, I want to say that I don't think anyone "chooses" this fate. Now THAT would be "ridiculous". I know I didn't choose for my every thought and motivation to be controlled by alcohol. And as "ridiculous" as you might describe someone's behavior on the surface, I think it's important to recognize the very serious, very un-ridiculous reality of addiction. If someone is struggling, we might try to help them rather than label and judge.
<br />Entropy, thank you for sharing this with us. This reminds me that I am not alone, and of how precious and fragile our lives can be.
 
E

entropy

Guest
@ LouLou

My sister was a very gentle soul. She did not like causing other people discomfort, and that extended to her neglecting to go to the doctor because she didn't have a car and didn't want to burden anybody with taking her there. Her boyfriend was a crackhead and was receiving xanax for social anxiety disorder and percocet for "shoulder pain." He was on SSI and spent his monthly $600 check on crack, which he shared with my sister. My sister wanted people to think she was normal. She was embarrassed to cough in front of people and easily gave into peer pressure. I have no doubt she had very low self esteem and was very depressed. I think she knew she was killing herself but didn't care because she felt so badly. Drugs made her feel better about dying. Her death did change my outlook in a lot of ways. I became very depressed and pessimistic about CF and life in general. Doctors were pushing antidepressants on me (which I still take because of the horrible withdrawal) and those just made my thoughts even more negative.

My sister's eyes were closed for the whole day before she passed away. The instant before she passed, she sat up in bed and opened her eyes wide. Then her heart stopped.

@lilywing

I definitely agree with you that addiction isn't something people choose, it's just something that happens. My opinion is that people with a chronic disease are more prone to these behaviors unless they have very good preexisting coping skills to deal with the depression and low self esteem a disease like this can cause. My sister didn't have any of these kinds of coping skills. My mom sent her to a psychiatrist a few times but she wouldn't talk, so my mom stopped sending her.

Not even people WITHOUT CF can live very long doing hard drugs like that, and if they do they are very very lucky.
 
E

entropy

Guest
@ LouLou

My sister was a very gentle soul. She did not like causing other people discomfort, and that extended to her neglecting to go to the doctor because she didn't have a car and didn't want to burden anybody with taking her there. Her boyfriend was a crackhead and was receiving xanax for social anxiety disorder and percocet for "shoulder pain." He was on SSI and spent his monthly $600 check on crack, which he shared with my sister. My sister wanted people to think she was normal. She was embarrassed to cough in front of people and easily gave into peer pressure. I have no doubt she had very low self esteem and was very depressed. I think she knew she was killing herself but didn't care because she felt so badly. Drugs made her feel better about dying. Her death did change my outlook in a lot of ways. I became very depressed and pessimistic about CF and life in general. Doctors were pushing antidepressants on me (which I still take because of the horrible withdrawal) and those just made my thoughts even more negative.

My sister's eyes were closed for the whole day before she passed away. The instant before she passed, she sat up in bed and opened her eyes wide. Then her heart stopped.

@lilywing

I definitely agree with you that addiction isn't something people choose, it's just something that happens. My opinion is that people with a chronic disease are more prone to these behaviors unless they have very good preexisting coping skills to deal with the depression and low self esteem a disease like this can cause. My sister didn't have any of these kinds of coping skills. My mom sent her to a psychiatrist a few times but she wouldn't talk, so my mom stopped sending her.

Not even people WITHOUT CF can live very long doing hard drugs like that, and if they do they are very very lucky.
 
E

entropy

Guest
@ LouLou
<br />
<br />My sister was a very gentle soul. She did not like causing other people discomfort, and that extended to her neglecting to go to the doctor because she didn't have a car and didn't want to burden anybody with taking her there. Her boyfriend was a crackhead and was receiving xanax for social anxiety disorder and percocet for "shoulder pain." He was on SSI and spent his monthly $600 check on crack, which he shared with my sister. My sister wanted people to think she was normal. She was embarrassed to cough in front of people and easily gave into peer pressure. I have no doubt she had very low self esteem and was very depressed. I think she knew she was killing herself but didn't care because she felt so badly. Drugs made her feel better about dying. Her death did change my outlook in a lot of ways. I became very depressed and pessimistic about CF and life in general. Doctors were pushing antidepressants on me (which I still take because of the horrible withdrawal) and those just made my thoughts even more negative.
<br />
<br />My sister's eyes were closed for the whole day before she passed away. The instant before she passed, she sat up in bed and opened her eyes wide. Then her heart stopped.
<br />
<br />@lilywing
<br />
<br />I definitely agree with you that addiction isn't something people choose, it's just something that happens. My opinion is that people with a chronic disease are more prone to these behaviors unless they have very good preexisting coping skills to deal with the depression and low self esteem a disease like this can cause. My sister didn't have any of these kinds of coping skills. My mom sent her to a psychiatrist a few times but she wouldn't talk, so my mom stopped sending her.
<br />
<br />Not even people WITHOUT CF can live very long doing hard drugs like that, and if they do they are very very lucky.
 

missT

Member
You are so young to be going through all of this. I just wanted to send love and healing vibes your way. I hope it doesnt sound corny but I am going to pray for you tonight (and I am not religious) just spiritual. I would imagine you have a lot of different emotions and pain. When I was 21 I was so mad at the world, my parents, and I couldnt understand "why me"???? I can tell you that life is beautiful----- even when I am throwing up mucus over the toilet (which I just did). You never know when things can turn around. I hope that you have someone you can talk to and get all of this out. This forum has a lot of really supportive people that care.
 

missT

Member
You are so young to be going through all of this. I just wanted to send love and healing vibes your way. I hope it doesnt sound corny but I am going to pray for you tonight (and I am not religious) just spiritual. I would imagine you have a lot of different emotions and pain. When I was 21 I was so mad at the world, my parents, and I couldnt understand "why me"???? I can tell you that life is beautiful----- even when I am throwing up mucus over the toilet (which I just did). You never know when things can turn around. I hope that you have someone you can talk to and get all of this out. This forum has a lot of really supportive people that care.
 

missT

Member
You are so young to be going through all of this. I just wanted to send love and healing vibes your way. I hope it doesnt sound corny but I am going to pray for you tonight (and I am not religious) just spiritual. I would imagine you have a lot of different emotions and pain. When I was 21 I was so mad at the world, my parents, and I couldnt understand "why me"???? I can tell you that life is beautiful----- even when I am throwing up mucus over the toilet (which I just did). You never know when things can turn around. I hope that you have someone you can talk to and get all of this out. This forum has a lot of really supportive people that care.
 

LouLou

New member
Lilywing and Entropy, I wish you both a positive and optimistic future. What genes do you have?

I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.

I couldn't agree more about addiction being an illness. How quickly does addiction set in with use of these hard core type of drugs?

Have a great day!
 

LouLou

New member
Lilywing and Entropy, I wish you both a positive and optimistic future. What genes do you have?

I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.

I couldn't agree more about addiction being an illness. How quickly does addiction set in with use of these hard core type of drugs?

Have a great day!
 

LouLou

New member
Lilywing and Entropy, I wish you both a positive and optimistic future. What genes do you have?
<br />
<br />I'm glad you shared your feelings about what I said. Back in the day most threads were like this...people actually saying how they felt about what someone else had to say. It was much more real. Now mostly just facts are shared and I feel we are missing the emotional side of cf. Entropy I hope you stick around and continue to post. You have a lot to offer our community.
<br />
<br />I couldn't agree more about addiction being an illness. How quickly does addiction set in with use of these hard core type of drugs?
<br />
<br />Have a great day!
 

crickit715

New member
as the parent of a cf'er i often wonder how to handle the "precautions" vs. "normalicy"......and what ramifications will unfold depending on how i treat the disease. do you feel that the way your parents treated the cf (possibly being overly cautious) contributed to the situation???
 

crickit715

New member
as the parent of a cf'er i often wonder how to handle the "precautions" vs. "normalicy"......and what ramifications will unfold depending on how i treat the disease. do you feel that the way your parents treated the cf (possibly being overly cautious) contributed to the situation???
 
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