Pod Cast with Jerry Cahill

Mistyjo

New member
Wow! I didn't know the npd was scored based on each individual. I completely misunderstood everything i read about it then. I thought there were set scores ranges that are indicative of cf.
My Mom struggled for most of her life with health problems ranging from sever GI to chronic pnuemonia and pulmonary fibrosis, but she went most of her life undiagnosed and pushed around by doctors. I was constantly fighting for her the last two years of her life. It's very hard when your loved one is so sick and yet no one can tell you why. When the battle started with my daughter I started spending hrs online to try to help her and get some answers. I too am a people pleaser and I had to fight through that and stop trying not to upset my Mom's doctors and in the end I through a nurse out of her room and told a doctor off!!
I hope you get some answers soon! You are a very strong women b/c of all you've had to go through in your life. I'm sure you will do great on the podcast.
 

Mistyjo

New member
Wow! I didn't know the npd was scored based on each individual. I completely misunderstood everything i read about it then. I thought there were set scores ranges that are indicative of cf.
<br />My Mom struggled for most of her life with health problems ranging from sever GI to chronic pnuemonia and pulmonary fibrosis, but she went most of her life undiagnosed and pushed around by doctors. I was constantly fighting for her the last two years of her life. It's very hard when your loved one is so sick and yet no one can tell you why. When the battle started with my daughter I started spending hrs online to try to help her and get some answers. I too am a people pleaser and I had to fight through that and stop trying not to upset my Mom's doctors and in the end I through a nurse out of her room and told a doctor off!!
<br />I hope you get some answers soon! You are a very strong women b/c of all you've had to go through in your life. I'm sure you will do great on the podcast.
 

JennifersHope

New member
The Pod Cast went great, Jerry is more amazing then you can imagine.. He is for sure a no excuse kind of guy and he can show you how to get it done.

I will post when the podcast is done. I think it went well!!! @Mistyjo, one thing I have really learned the hard way, but lesson learned none the less, is NEVER settle for mediocrity. Fight to have the best quality of life you can have. I even as a nurse have a very hard time advocating for myself, asking questions, pushing for tests etc. I have learned recently that No one is going to care more about your loved one or you more then yourself. I have really set the wheels in motion for me to get more answers, to improve my quality of life!

Sounds to me like your mom had some form of CF or something similar, I was recently told that most likely my health issues could be related to the two genes I have, not manifesting a regular CF but some other major respiratory issues. No one knows yet, but you better bet that we are working on getting answers. I will pray for you to have the strength and tenacity it takes to get a proper diagnose and you pray that for me.

Deal?
 

JennifersHope

New member
The Pod Cast went great, Jerry is more amazing then you can imagine.. He is for sure a no excuse kind of guy and he can show you how to get it done.

I will post when the podcast is done. I think it went well!!! @Mistyjo, one thing I have really learned the hard way, but lesson learned none the less, is NEVER settle for mediocrity. Fight to have the best quality of life you can have. I even as a nurse have a very hard time advocating for myself, asking questions, pushing for tests etc. I have learned recently that No one is going to care more about your loved one or you more then yourself. I have really set the wheels in motion for me to get more answers, to improve my quality of life!

Sounds to me like your mom had some form of CF or something similar, I was recently told that most likely my health issues could be related to the two genes I have, not manifesting a regular CF but some other major respiratory issues. No one knows yet, but you better bet that we are working on getting answers. I will pray for you to have the strength and tenacity it takes to get a proper diagnose and you pray that for me.

Deal?
 

JennifersHope

New member
The Pod Cast went great, Jerry is more amazing then you can imagine.. He is for sure a no excuse kind of guy and he can show you how to get it done.
<br />
<br />I will post when the podcast is done. I think it went well!!! @Mistyjo, one thing I have really learned the hard way, but lesson learned none the less, is NEVER settle for mediocrity. Fight to have the best quality of life you can have. I even as a nurse have a very hard time advocating for myself, asking questions, pushing for tests etc. I have learned recently that No one is going to care more about your loved one or you more then yourself. I have really set the wheels in motion for me to get more answers, to improve my quality of life!
<br />
<br />Sounds to me like your mom had some form of CF or something similar, I was recently told that most likely my health issues could be related to the two genes I have, not manifesting a regular CF but some other major respiratory issues. No one knows yet, but you better bet that we are working on getting answers. I will pray for you to have the strength and tenacity it takes to get a proper diagnose and you pray that for me.
<br />
<br />Deal?
 
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