what do you guys do in a day?

A

Aka2007

New member
I am 20 years old and have CF.
I do allot of medical treatments in a day. I do 3 in a day. I also do tube-feedings
at night and doing the day. I also use oxyegn sometimes. My FEV1 is 65% and 45%. I sleep allot. My ?? is how do you guys have time to go to work or school when there is so much medical things to do. I have been in the hospital now 2 time for a tune-up this year. I don't have friends to talk to.

What should I do? I sad and sick of being ill with CF!
 
A

Aka2007

New member
I am 20 years old and have CF.
I do allot of medical treatments in a day. I do 3 in a day. I also do tube-feedings
at night and doing the day. I also use oxyegn sometimes. My FEV1 is 65% and 45%. I sleep allot. My ?? is how do you guys have time to go to work or school when there is so much medical things to do. I have been in the hospital now 2 time for a tune-up this year. I don't have friends to talk to.

What should I do? I sad and sick of being ill with CF!
 
A

Aka2007

New member
I am 20 years old and have CF.
I do allot of medical treatments in a day. I do 3 in a day. I also do tube-feedings
at night and doing the day. I also use oxyegn sometimes. My FEV1 is 65% and 45%. I sleep allot. My ?? is how do you guys have time to go to work or school when there is so much medical things to do. I have been in the hospital now 2 time for a tune-up this year. I don't have friends to talk to.

What should I do? I sad and sick of being ill with CF!
 
A

Aka2007

New member
I am 20 years old and have CF.
I do allot of medical treatments in a day. I do 3 in a day. I also do tube-feedings
at night and doing the day. I also use oxyegn sometimes. My FEV1 is 65% and 45%. I sleep allot. My ?? is how do you guys have time to go to work or school when there is so much medical things to do. I have been in the hospital now 2 time for a tune-up this year. I don't have friends to talk to.

What should I do? I sad and sick of being ill with CF!
 
A

Aka2007

New member
I am 20 years old and have CF.
I do allot of medical treatments in a day. I do 3 in a day. I also do tube-feedings
at night and doing the day. I also use oxyegn sometimes. My FEV1 is 65% and 45%. I sleep allot. My ?? is how do you guys have time to go to work or school when there is so much medical things to do. I have been in the hospital now 2 time for a tune-up this year. I don't have friends to talk to.

What should I do? I sad and sick of being ill with CF!
 
T

tara

New member
Having family support definitely helps. I'm 31 years old with CF and I've had a rough two years. I spend about 90 minutes a day on vest and nebs, and right now I'm on IV antibiotics 4 times a day as well. I have two (almost) 3 year olds to look after. I am permantly disabled according to Social Security. I have a mother who is retired and she helps out a lot. My husband is very understanding and he picks up the slack at home when I can do nothing more than survive. Do you have anyone to talk to? A social worker at your clinic? A family member? It definitely helps to have family support to do the everyday non-cf related things like housecleaning and cooking.
 
T

tara

New member
Having family support definitely helps. I'm 31 years old with CF and I've had a rough two years. I spend about 90 minutes a day on vest and nebs, and right now I'm on IV antibiotics 4 times a day as well. I have two (almost) 3 year olds to look after. I am permantly disabled according to Social Security. I have a mother who is retired and she helps out a lot. My husband is very understanding and he picks up the slack at home when I can do nothing more than survive. Do you have anyone to talk to? A social worker at your clinic? A family member? It definitely helps to have family support to do the everyday non-cf related things like housecleaning and cooking.
 
T

tara

New member
Having family support definitely helps. I'm 31 years old with CF and I've had a rough two years. I spend about 90 minutes a day on vest and nebs, and right now I'm on IV antibiotics 4 times a day as well. I have two (almost) 3 year olds to look after. I am permantly disabled according to Social Security. I have a mother who is retired and she helps out a lot. My husband is very understanding and he picks up the slack at home when I can do nothing more than survive. Do you have anyone to talk to? A social worker at your clinic? A family member? It definitely helps to have family support to do the everyday non-cf related things like housecleaning and cooking.
 
T

tara

New member
Having family support definitely helps. I'm 31 years old with CF and I've had a rough two years. I spend about 90 minutes a day on vest and nebs, and right now I'm on IV antibiotics 4 times a day as well. I have two (almost) 3 year olds to look after. I am permantly disabled according to Social Security. I have a mother who is retired and she helps out a lot. My husband is very understanding and he picks up the slack at home when I can do nothing more than survive. Do you have anyone to talk to? A social worker at your clinic? A family member? It definitely helps to have family support to do the everyday non-cf related things like housecleaning and cooking.
 
T

tara

New member
Having family support definitely helps. I'm 31 years old with CF and I've had a rough two years. I spend about 90 minutes a day on vest and nebs, and right now I'm on IV antibiotics 4 times a day as well. I have two (almost) 3 year olds to look after. I am permantly disabled according to Social Security. I have a mother who is retired and she helps out a lot. My husband is very understanding and he picks up the slack at home when I can do nothing more than survive. Do you have anyone to talk to? A social worker at your clinic? A family member? It definitely helps to have family support to do the everyday non-cf related things like housecleaning and cooking.
 
C

CountryGirl

New member
Hey I hope you were able to get my private message. I think it would be good for us to talk since we're both the same age and have probably expirienced alot of the same things, although I know there is a ton of good advice on here. Just I think it would be easier in some ways to email back and forth.
 
C

CountryGirl

New member
Hey I hope you were able to get my private message. I think it would be good for us to talk since we're both the same age and have probably expirienced alot of the same things, although I know there is a ton of good advice on here. Just I think it would be easier in some ways to email back and forth.
 
C

CountryGirl

New member
Hey I hope you were able to get my private message. I think it would be good for us to talk since we're both the same age and have probably expirienced alot of the same things, although I know there is a ton of good advice on here. Just I think it would be easier in some ways to email back and forth.
 
C

CountryGirl

New member
Hey I hope you were able to get my private message. I think it would be good for us to talk since we're both the same age and have probably expirienced alot of the same things, although I know there is a ton of good advice on here. Just I think it would be easier in some ways to email back and forth.
 
C

CountryGirl

New member
Hey I hope you were able to get my private message. I think it would be good for us to talk since we're both the same age and have probably expirienced alot of the same things, although I know there is a ton of good advice on here. Just I think it would be easier in some ways to email back and forth.
 
J

jennastroitzel

New member
I think alot of us feel sad and sick of having CF at some point it gets annoying being "special" and sometimes it's nice just to fit in and do regular stuff like work and school. I guess the school or work thing comes down to how well you are with your CF and what kind of support network you can get. I was lucky I guess because I had a good medical team (until earlier this year when we moved house), I had good support at school, I have a supportive family and a husband who helps out too. I don't have any friends with CF so that was hard when I was your age but I have alot of friends without CF - and I made it my mission to make them understand what CF means to me. I don't need oxygen or tube feeding so that makes life at work easier. I finally got an unerstanding employer but it did mean having to negotiate a sickness policy with them. We have an occupational health department where I can use the facilities if I am there (I think alot of big companies will have one?). I also got a job that I can do mostly from home - I just go to the office twice a week to pick up work and meet the manager to go over my work etc. You might have to get inventive, but there might be something you could do from home. I don't know what school qualifications you have -my job depended on me having some higher qualifications. It was hard getting through university but I managed it with some extra provisions - I was late graduating though because of sickness. Hugs Jx (PS if you do want to "talk" anything through just pm me).
 
J

jennastroitzel

New member
I think alot of us feel sad and sick of having CF at some point it gets annoying being "special" and sometimes it's nice just to fit in and do regular stuff like work and school. I guess the school or work thing comes down to how well you are with your CF and what kind of support network you can get. I was lucky I guess because I had a good medical team (until earlier this year when we moved house), I had good support at school, I have a supportive family and a husband who helps out too. I don't have any friends with CF so that was hard when I was your age but I have alot of friends without CF - and I made it my mission to make them understand what CF means to me. I don't need oxygen or tube feeding so that makes life at work easier. I finally got an unerstanding employer but it did mean having to negotiate a sickness policy with them. We have an occupational health department where I can use the facilities if I am there (I think alot of big companies will have one?). I also got a job that I can do mostly from home - I just go to the office twice a week to pick up work and meet the manager to go over my work etc. You might have to get inventive, but there might be something you could do from home. I don't know what school qualifications you have -my job depended on me having some higher qualifications. It was hard getting through university but I managed it with some extra provisions - I was late graduating though because of sickness. Hugs Jx (PS if you do want to "talk" anything through just pm me).
 
J

jennastroitzel

New member
I think alot of us feel sad and sick of having CF at some point it gets annoying being "special" and sometimes it's nice just to fit in and do regular stuff like work and school. I guess the school or work thing comes down to how well you are with your CF and what kind of support network you can get. I was lucky I guess because I had a good medical team (until earlier this year when we moved house), I had good support at school, I have a supportive family and a husband who helps out too. I don't have any friends with CF so that was hard when I was your age but I have alot of friends without CF - and I made it my mission to make them understand what CF means to me. I don't need oxygen or tube feeding so that makes life at work easier. I finally got an unerstanding employer but it did mean having to negotiate a sickness policy with them. We have an occupational health department where I can use the facilities if I am there (I think alot of big companies will have one?). I also got a job that I can do mostly from home - I just go to the office twice a week to pick up work and meet the manager to go over my work etc. You might have to get inventive, but there might be something you could do from home. I don't know what school qualifications you have -my job depended on me having some higher qualifications. It was hard getting through university but I managed it with some extra provisions - I was late graduating though because of sickness. Hugs Jx (PS if you do want to "talk" anything through just pm me).
 
J

jennastroitzel

New member
I think alot of us feel sad and sick of having CF at some point it gets annoying being "special" and sometimes it's nice just to fit in and do regular stuff like work and school. I guess the school or work thing comes down to how well you are with your CF and what kind of support network you can get. I was lucky I guess because I had a good medical team (until earlier this year when we moved house), I had good support at school, I have a supportive family and a husband who helps out too. I don't have any friends with CF so that was hard when I was your age but I have alot of friends without CF - and I made it my mission to make them understand what CF means to me. I don't need oxygen or tube feeding so that makes life at work easier. I finally got an unerstanding employer but it did mean having to negotiate a sickness policy with them. We have an occupational health department where I can use the facilities if I am there (I think alot of big companies will have one?). I also got a job that I can do mostly from home - I just go to the office twice a week to pick up work and meet the manager to go over my work etc. You might have to get inventive, but there might be something you could do from home. I don't know what school qualifications you have -my job depended on me having some higher qualifications. It was hard getting through university but I managed it with some extra provisions - I was late graduating though because of sickness. Hugs Jx (PS if you do want to "talk" anything through just pm me).
 
J

jennastroitzel

New member
I think alot of us feel sad and sick of having CF at some point it gets annoying being "special" and sometimes it's nice just to fit in and do regular stuff like work and school. I guess the school or work thing comes down to how well you are with your CF and what kind of support network you can get. I was lucky I guess because I had a good medical team (until earlier this year when we moved house), I had good support at school, I have a supportive family and a husband who helps out too. I don't have any friends with CF so that was hard when I was your age but I have alot of friends without CF - and I made it my mission to make them understand what CF means to me. I don't need oxygen or tube feeding so that makes life at work easier. I finally got an unerstanding employer but it did mean having to negotiate a sickness policy with them. We have an occupational health department where I can use the facilities if I am there (I think alot of big companies will have one?). I also got a job that I can do mostly from home - I just go to the office twice a week to pick up work and meet the manager to go over my work etc. You might have to get inventive, but there might be something you could do from home. I don't know what school qualifications you have -my job depended on me having some higher qualifications. It was hard getting through university but I managed it with some extra provisions - I was late graduating though because of sickness. Hugs Jx (PS if you do want to "talk" anything through just pm me).
 
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