JennifersHope
New member
I was really leary about talking to the playwriter people today at clinic... My clinic visit overall was a huge success... I blew amazing numbers and I am thrilled.... and also my doctor knows the CF doctor in Charlston, SC so he is going to help me get set up...
So anyway, my doctor came in and talked to me about a few things and asked if the playwriter could come in.. This guy ( the playwriter ) was hired by one of the drug companies to write a play about being an adult with CF...
His name was Mike, he was so sweet.... I answered all his questions, I told him my story and I shared as best as I could, trying to represent all of us adults with CF.. I told of the insurance woes we have, how some of you guys are thinking of divorcing your spouses or not getting legally married just so you don't lose your state help or benefits.
I told him that while I was thrilled for all the advances in health care, I feel like the system needs to improve to give adults incentive to be successful in this life...and as it stands now for me. After years of pushing myself to the limit in nursing school that I "graduated" myself off any funding programs to help pay for my medication.
I told him that the money I spend on medication a month I could easily have a brand new fancy dancy car ..
I also tried to tell him what it is like for a parent of an adult CFer.. I shared how my dad has not been able to retire because he couldn't be assured I was going to be able to make it on my own..
Anyway, he was a super great guy, his whole job is to learn the life of an adult CFer and to write a play about it.
When he applied for the job as a playwriter he didn't know anything about CF, he just read stuff on the internet and went from there.. Now he has submerged himself into the lives of CFers.....and he is so genuinely trying to understand it...
I could tell he wanted to ask me more direct questions but didn't know where the boundries were..
I gave him this website address, and my user name and I told him that if he really wants to get a great idea of what it was like to be an adult CFer he should come here.. He did write down the website.. and I really hope that he comes here to read it....
If he does I know we can help him to do a great job with the play........If he doesn't come he doesn't come but I think that he may be intrigued enough to
I told him all about Jeanne, He was very interested in the support groups setting that goes on here... He asked me about pretending with our familes.. and I laughed because I just wrote a post about it....
I told him that this forum is the only place some of us are gut wrentchingly honest ( though that isn't going to be the case for me anymore I hope)
ANyway.. Hope he comes and I hope I did a good enough job... I tried...
Jennifer
So anyway, my doctor came in and talked to me about a few things and asked if the playwriter could come in.. This guy ( the playwriter ) was hired by one of the drug companies to write a play about being an adult with CF...
His name was Mike, he was so sweet.... I answered all his questions, I told him my story and I shared as best as I could, trying to represent all of us adults with CF.. I told of the insurance woes we have, how some of you guys are thinking of divorcing your spouses or not getting legally married just so you don't lose your state help or benefits.
I told him that while I was thrilled for all the advances in health care, I feel like the system needs to improve to give adults incentive to be successful in this life...and as it stands now for me. After years of pushing myself to the limit in nursing school that I "graduated" myself off any funding programs to help pay for my medication.
I told him that the money I spend on medication a month I could easily have a brand new fancy dancy car ..
I also tried to tell him what it is like for a parent of an adult CFer.. I shared how my dad has not been able to retire because he couldn't be assured I was going to be able to make it on my own..
Anyway, he was a super great guy, his whole job is to learn the life of an adult CFer and to write a play about it.
When he applied for the job as a playwriter he didn't know anything about CF, he just read stuff on the internet and went from there.. Now he has submerged himself into the lives of CFers.....and he is so genuinely trying to understand it...
I could tell he wanted to ask me more direct questions but didn't know where the boundries were..
I gave him this website address, and my user name and I told him that if he really wants to get a great idea of what it was like to be an adult CFer he should come here.. He did write down the website.. and I really hope that he comes here to read it....
If he does I know we can help him to do a great job with the play........If he doesn't come he doesn't come but I think that he may be intrigued enough to
I told him all about Jeanne, He was very interested in the support groups setting that goes on here... He asked me about pretending with our familes.. and I laughed because I just wrote a post about it....
I told him that this forum is the only place some of us are gut wrentchingly honest ( though that isn't going to be the case for me anymore I hope)
ANyway.. Hope he comes and I hope I did a good enough job... I tried...
Jennifer