Dying with continuing to live

lucieblue

New member
Thanks for your replies!

My head of year understand that I have CF, she just doesn't understand that I have 'end-stage' CF. Sorry, I didn't word it properly in my post - thats where my problem lies, and thats what I'm having difficulty telling her.

Lucie.
 

lucieblue

New member
Thanks for your replies!

My head of year understand that I have CF, she just doesn't understand that I have 'end-stage' CF. Sorry, I didn't word it properly in my post - thats where my problem lies, and thats what I'm having difficulty telling her.

Lucie.
 

lucieblue

New member
Thanks for your replies!

My head of year understand that I have CF, she just doesn't understand that I have 'end-stage' CF. Sorry, I didn't word it properly in my post - thats where my problem lies, and thats what I'm having difficulty telling her.

Lucie.
 

lucieblue

New member
Thanks for your replies!

My head of year understand that I have CF, she just doesn't understand that I have 'end-stage' CF. Sorry, I didn't word it properly in my post - thats where my problem lies, and thats what I'm having difficulty telling her.

Lucie.
 

laulau555

New member
Does your college have a students with disabilities program? often if you can register with them you will have something that says what your "disabilities" are as far as what you can and cannot do and that you can be excused for those reasons. it usually makes it easier for professors to understand
 

laulau555

New member
Does your college have a students with disabilities program? often if you can register with them you will have something that says what your "disabilities" are as far as what you can and cannot do and that you can be excused for those reasons. it usually makes it easier for professors to understand
 

laulau555

New member
Does your college have a students with disabilities program? often if you can register with them you will have something that says what your "disabilities" are as far as what you can and cannot do and that you can be excused for those reasons. it usually makes it easier for professors to understand
 

laulau555

New member
Does your college have a students with disabilities program? often if you can register with them you will have something that says what your "disabilities" are as far as what you can and cannot do and that you can be excused for those reasons. it usually makes it easier for professors to understand
 

laulau555

New member
Does your college have a students with disabilities program? often if you can register with them you will have something that says what your "disabilities" are as far as what you can and cannot do and that you can be excused for those reasons. it usually makes it easier for professors to understand
 
M

MiddleAgedLady

Guest
I'm wondering if your school has any staff counselors available for the students? That person might be a good person to accompany you in speaking to your head of year.

you are a good writer. Another thought is to print and share this thread, adding a definition of what end-stage CF entails.

These are big, heavy discussions to be having at such a young age. My heart goes out to you.

Joan
 
M

MiddleAgedLady

Guest
I'm wondering if your school has any staff counselors available for the students? That person might be a good person to accompany you in speaking to your head of year.

you are a good writer. Another thought is to print and share this thread, adding a definition of what end-stage CF entails.

These are big, heavy discussions to be having at such a young age. My heart goes out to you.

Joan
 
M

MiddleAgedLady

Guest
I'm wondering if your school has any staff counselors available for the students? That person might be a good person to accompany you in speaking to your head of year.

you are a good writer. Another thought is to print and share this thread, adding a definition of what end-stage CF entails.

These are big, heavy discussions to be having at such a young age. My heart goes out to you.

Joan
 
M

MiddleAgedLady

Guest
I'm wondering if your school has any staff counselors available for the students? That person might be a good person to accompany you in speaking to your head of year.

you are a good writer. Another thought is to print and share this thread, adding a definition of what end-stage CF entails.

These are big, heavy discussions to be having at such a young age. My heart goes out to you.

Joan
 
M

MiddleAgedLady

Guest
I'm wondering if your school has any staff counselors available for the students? That person might be a good person to accompany you in speaking to your head of year.
<br />
<br />you are a good writer. Another thought is to print and share this thread, adding a definition of what end-stage CF entails.
<br />
<br />These are big, heavy discussions to be having at such a young age. My heart goes out to you.
<br />
<br />Joan
 

Giggles

New member
I have a step son who is unfortunately clueless about CF no matter how much we tell him and what he actually sees me doing. I once emailed a YOU TUBE video to him that actually had teens talking about CF and I thought he could realy relate to that. He later told me it helped, although his empathy and understanding has not changed which is antoher story for antother time. But what about sending the person some choice YOU TUBE montages about the disease along with a packet of brief information and then have a meeting and tell them how it affects you. Through out the years I have found that sometimes I make it harder then it has to be in terms of explaining it but if you just tell them what your daily life is like, how you feel, what CF is and maybe add in some YOU TUBE videos that could really make that person understand. I do wish you luck . The suggestion of online schooling sounds like a really great option for CF'rs. Good Luck and just speak from the heart.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I have a step son who is unfortunately clueless about CF no matter how much we tell him and what he actually sees me doing. I once emailed a YOU TUBE video to him that actually had teens talking about CF and I thought he could realy relate to that. He later told me it helped, although his empathy and understanding has not changed which is antoher story for antother time. But what about sending the person some choice YOU TUBE montages about the disease along with a packet of brief information and then have a meeting and tell them how it affects you. Through out the years I have found that sometimes I make it harder then it has to be in terms of explaining it but if you just tell them what your daily life is like, how you feel, what CF is and maybe add in some YOU TUBE videos that could really make that person understand. I do wish you luck . The suggestion of online schooling sounds like a really great option for CF'rs. Good Luck and just speak from the heart.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I have a step son who is unfortunately clueless about CF no matter how much we tell him and what he actually sees me doing. I once emailed a YOU TUBE video to him that actually had teens talking about CF and I thought he could realy relate to that. He later told me it helped, although his empathy and understanding has not changed which is antoher story for antother time. But what about sending the person some choice YOU TUBE montages about the disease along with a packet of brief information and then have a meeting and tell them how it affects you. Through out the years I have found that sometimes I make it harder then it has to be in terms of explaining it but if you just tell them what your daily life is like, how you feel, what CF is and maybe add in some YOU TUBE videos that could really make that person understand. I do wish you luck . The suggestion of online schooling sounds like a really great option for CF'rs. Good Luck and just speak from the heart.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I have a step son who is unfortunately clueless about CF no matter how much we tell him and what he actually sees me doing. I once emailed a YOU TUBE video to him that actually had teens talking about CF and I thought he could realy relate to that. He later told me it helped, although his empathy and understanding has not changed which is antoher story for antother time. But what about sending the person some choice YOU TUBE montages about the disease along with a packet of brief information and then have a meeting and tell them how it affects you. Through out the years I have found that sometimes I make it harder then it has to be in terms of explaining it but if you just tell them what your daily life is like, how you feel, what CF is and maybe add in some YOU TUBE videos that could really make that person understand. I do wish you luck . The suggestion of online schooling sounds like a really great option for CF'rs. Good Luck and just speak from the heart.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I have a step son who is unfortunately clueless about CF no matter how much we tell him and what he actually sees me doing. I once emailed a YOU TUBE video to him that actually had teens talking about CF and I thought he could realy relate to that. He later told me it helped, although his empathy and understanding has not changed which is antoher story for antother time. But what about sending the person some choice YOU TUBE montages about the disease along with a packet of brief information and then have a meeting and tell them how it affects you. Through out the years I have found that sometimes I make it harder then it has to be in terms of explaining it but if you just tell them what your daily life is like, how you feel, what CF is and maybe add in some YOU TUBE videos that could really make that person understand. I do wish you luck . The suggestion of online schooling sounds like a really great option for CF'rs. Good Luck and just speak from the heart.
<br />
<br />Jennifer 37 with CF and CFRD
 

CountryGirl

New member
Hi, I hope this helps. I have missed plenty of school and it is hard has always been difficult for me at first to tell my professors about my CF or now my rejection.
Like laulau said though, The Office of Students with Dissabilities has been very helpful for me, just when you need that extra support. They're always great at breaking the ice too.

Anyways, my advice to you is to just tell her what "end stage" CF is. They are people just you us. Yes, they may be intimidating at times but really I've come to learn a lot about my professors by talking to them about my CF and transplant. Either schedule and appt or go in during office hours. Maybe a letter from you doctor explaining what "end stage" CF is. That might be helpful as well.

I hope this helps a little.

-Anna
 
Top