Mel... Jeanne.. and anyone else in NYC area

JennifersHope

New member
I am so hoping this works.. Melissa, Jeanne and I have been trying to get together forever..... Every date that Melissa has given me, I have had to work....

The doctor's office from NYC called me today and asked me to do my talk again.. Every year I go and talk to several hundred Cornell med students who are about to graduate the following May. It is so much fun.. My doctor.... the one who finally dx me with CF does a case presentation.. we start with just my symptoms that I had.. and slowly we add more information to see if they can figure it out....

The med students get to ask me questions, and then they try to figure my DX out..
It ususally takes them a little while but then they eventually catch on..

I then give a talk to them about my horrible experiences I have had with doctors not treating me well because I didn't have insurance, .. how I was only tested for TB and HIV etc.... We also talk about my wicked experience that I went though before I was dx with Addison's diseaes.. my months of hospital stays that led up to it.. and how they almost killed me because they had sterotyped me..... long story.. but I did have my life ripped out from under me..Doing this talk always stirs up so much emotion in me but I am passionate that if I can get through to just one of these future doctors it is worth it to me...

I then do a cystic fibrosis awareness kind of thing... It is amazing.. I always cry and so do they...The whole point my doctor tries to make is that he was able to dx me by listening to me, not judging me and not being rushed out the door to the next patient..

The dr who DX me was a GI doctor who heard my cough and put my symptoms together.. he by listening to me was able to figure out in less then 5 minutes what was wrong with me.. and then sent me for the proper testing.. I had been to doctors for years and years before that with no one paying attention to me..

Part of the reason I decided to become a nurse is because I am very passionate about this issue now....This doctor is one of the most amazing doctors I have evey met.. and when ever I go back to his class to talk, it always makes me want to go work with him


anyway. all that to say the date is January 26th.. it will be mid morning till noon.. Mel and Jeanne and anyone else who lives close by.. want to meet for lunch afterwards or maybe come to hear the talk????

Let me know... I hope it works this time....

Jennifer
 

JennifersHope

New member
I am so hoping this works.. Melissa, Jeanne and I have been trying to get together forever..... Every date that Melissa has given me, I have had to work....

The doctor's office from NYC called me today and asked me to do my talk again.. Every year I go and talk to several hundred Cornell med students who are about to graduate the following May. It is so much fun.. My doctor.... the one who finally dx me with CF does a case presentation.. we start with just my symptoms that I had.. and slowly we add more information to see if they can figure it out....

The med students get to ask me questions, and then they try to figure my DX out..
It ususally takes them a little while but then they eventually catch on..

I then give a talk to them about my horrible experiences I have had with doctors not treating me well because I didn't have insurance, .. how I was only tested for TB and HIV etc.... We also talk about my wicked experience that I went though before I was dx with Addison's diseaes.. my months of hospital stays that led up to it.. and how they almost killed me because they had sterotyped me..... long story.. but I did have my life ripped out from under me..Doing this talk always stirs up so much emotion in me but I am passionate that if I can get through to just one of these future doctors it is worth it to me...

I then do a cystic fibrosis awareness kind of thing... It is amazing.. I always cry and so do they...The whole point my doctor tries to make is that he was able to dx me by listening to me, not judging me and not being rushed out the door to the next patient..

The dr who DX me was a GI doctor who heard my cough and put my symptoms together.. he by listening to me was able to figure out in less then 5 minutes what was wrong with me.. and then sent me for the proper testing.. I had been to doctors for years and years before that with no one paying attention to me..

Part of the reason I decided to become a nurse is because I am very passionate about this issue now....This doctor is one of the most amazing doctors I have evey met.. and when ever I go back to his class to talk, it always makes me want to go work with him


anyway. all that to say the date is January 26th.. it will be mid morning till noon.. Mel and Jeanne and anyone else who lives close by.. want to meet for lunch afterwards or maybe come to hear the talk????

Let me know... I hope it works this time....

Jennifer
 

JennifersHope

New member
I am so hoping this works.. Melissa, Jeanne and I have been trying to get together forever..... Every date that Melissa has given me, I have had to work....

The doctor's office from NYC called me today and asked me to do my talk again.. Every year I go and talk to several hundred Cornell med students who are about to graduate the following May. It is so much fun.. My doctor.... the one who finally dx me with CF does a case presentation.. we start with just my symptoms that I had.. and slowly we add more information to see if they can figure it out....

The med students get to ask me questions, and then they try to figure my DX out..
It ususally takes them a little while but then they eventually catch on..

I then give a talk to them about my horrible experiences I have had with doctors not treating me well because I didn't have insurance, .. how I was only tested for TB and HIV etc.... We also talk about my wicked experience that I went though before I was dx with Addison's diseaes.. my months of hospital stays that led up to it.. and how they almost killed me because they had sterotyped me..... long story.. but I did have my life ripped out from under me..Doing this talk always stirs up so much emotion in me but I am passionate that if I can get through to just one of these future doctors it is worth it to me...

I then do a cystic fibrosis awareness kind of thing... It is amazing.. I always cry and so do they...The whole point my doctor tries to make is that he was able to dx me by listening to me, not judging me and not being rushed out the door to the next patient..

The dr who DX me was a GI doctor who heard my cough and put my symptoms together.. he by listening to me was able to figure out in less then 5 minutes what was wrong with me.. and then sent me for the proper testing.. I had been to doctors for years and years before that with no one paying attention to me..

Part of the reason I decided to become a nurse is because I am very passionate about this issue now....This doctor is one of the most amazing doctors I have evey met.. and when ever I go back to his class to talk, it always makes me want to go work with him


anyway. all that to say the date is January 26th.. it will be mid morning till noon.. Mel and Jeanne and anyone else who lives close by.. want to meet for lunch afterwards or maybe come to hear the talk????

Let me know... I hope it works this time....

Jennifer
 

JazzysMom

New member
I am not near my calendar at the moment, but I definitely will do everything in my power to work this out. I am soooo excited. I meet Jeanne for lunch tomorrow so we will discuss it. HURRAY!
 

JazzysMom

New member
I am not near my calendar at the moment, but I definitely will do everything in my power to work this out. I am soooo excited. I meet Jeanne for lunch tomorrow so we will discuss it. HURRAY!
 

JazzysMom

New member
I am not near my calendar at the moment, but I definitely will do everything in my power to work this out. I am soooo excited. I meet Jeanne for lunch tomorrow so we will discuss it. HURRAY!
 

MYBOY

New member
Oh Jennifer that is so sad. I never heard how your diagnosis was missed for soooo many years. I wish I lived closer I would love to hear you! Your doc sounds wonderful! I guess my boy was lucky - I took him to a city doctor when he was 6 months old after being hospitalized at 8 weeks and not getting better - anyway he diagnosed it in minutes and went to get the testing done that day. I just can't believe how much more unnessasary pain and agony you go thru when you don't get diagnosed til later in life. I work with someone that her son wasn't diagnosed til he was about 20. That is one good thing that is coming from newborn screening!
 

MYBOY

New member
Oh Jennifer that is so sad. I never heard how your diagnosis was missed for soooo many years. I wish I lived closer I would love to hear you! Your doc sounds wonderful! I guess my boy was lucky - I took him to a city doctor when he was 6 months old after being hospitalized at 8 weeks and not getting better - anyway he diagnosed it in minutes and went to get the testing done that day. I just can't believe how much more unnessasary pain and agony you go thru when you don't get diagnosed til later in life. I work with someone that her son wasn't diagnosed til he was about 20. That is one good thing that is coming from newborn screening!
 

MYBOY

New member
Oh Jennifer that is so sad. I never heard how your diagnosis was missed for soooo many years. I wish I lived closer I would love to hear you! Your doc sounds wonderful! I guess my boy was lucky - I took him to a city doctor when he was 6 months old after being hospitalized at 8 weeks and not getting better - anyway he diagnosed it in minutes and went to get the testing done that day. I just can't believe how much more unnessasary pain and agony you go thru when you don't get diagnosed til later in life. I work with someone that her son wasn't diagnosed til he was about 20. That is one good thing that is coming from newborn screening!
 

Scarlett81

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0">
I wish I could Jen. The whole cepacia horror thing. I would love to even sneak in and watch your talk from the back of the room, but no can do.
Have a good time!
 

Scarlett81

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0">
I wish I could Jen. The whole cepacia horror thing. I would love to even sneak in and watch your talk from the back of the room, but no can do.
Have a good time!
 

Scarlett81

New member
<img src="i/expressions/face-icon-small-sad.gif" border="0">
I wish I could Jen. The whole cepacia horror thing. I would love to even sneak in and watch your talk from the back of the room, but no can do.
Have a good time!
 

Imogene

Administrator
I'm there!

Maybe Sarah can come too...what time is it? It should be televised...youtubed...we'd put it on the site!

Jeanne
 

Imogene

Administrator
I'm there!

Maybe Sarah can come too...what time is it? It should be televised...youtubed...we'd put it on the site!

Jeanne
 

Imogene

Administrator
I'm there!

Maybe Sarah can come too...what time is it? It should be televised...youtubed...we'd put it on the site!

Jeanne
 

beleache

New member
Hi Jennifer, Where exactly is it ? I live on Long Island, my drs are at Stony Brook Univ. Hosp. ... Let me know... Joni 55 y/o f w c/f
 

beleache

New member
Hi Jennifer, Where exactly is it ? I live on Long Island, my drs are at Stony Brook Univ. Hosp. ... Let me know... Joni 55 y/o f w c/f
 

beleache

New member
Hi Jennifer, Where exactly is it ? I live on Long Island, my drs are at Stony Brook Univ. Hosp. ... Let me know... Joni 55 y/o f w c/f
 

JennifersHope

New member
Hey..

It will be a Cornel University... which is in the city...in Manhatten.....

I was not looking so much for ppl to come to my talk as much as for us all to get together afterwards...I was thinking it was going to me more like a little lunch meeting type thing afterward... If anyone wants to come to hear great..... I don't know how great it will be for you.. .. but I will be there along with several other patients that my doctor helped fix.. with all different diseases... He presents each case one at a time..... and then gives them a chance to guess and ask questions... Then each person does a little speeach type thing.......

I don't want it video taped.... I would feel so silly... and it is a class room environment so I would have to ask the dr but I still don't want it to be..... I am not the best presentation of a CFer and I am much more healthy lung wise then the average person.... etc..... Sometimes I am embarrased to say I have CF when I see how much ppl my age are suffering....and in general how well I am doing... I feel so guilty

I am mostly excited about the chance for CF to get recognized with the doctors but also for the doctors to realize that they need to listen to their patients or it could cost them their life....

Anyway... we can plan a big lunch or something afterwards.. and Jeanne I can bring or you can bring some CF.com Pens..if you send them to me I will hand them out or something.... ..


Fun... I hope I get to meet a lot of you guys....

Jennifer
 

JennifersHope

New member
Hey..

It will be a Cornel University... which is in the city...in Manhatten.....

I was not looking so much for ppl to come to my talk as much as for us all to get together afterwards...I was thinking it was going to me more like a little lunch meeting type thing afterward... If anyone wants to come to hear great..... I don't know how great it will be for you.. .. but I will be there along with several other patients that my doctor helped fix.. with all different diseases... He presents each case one at a time..... and then gives them a chance to guess and ask questions... Then each person does a little speeach type thing.......

I don't want it video taped.... I would feel so silly... and it is a class room environment so I would have to ask the dr but I still don't want it to be..... I am not the best presentation of a CFer and I am much more healthy lung wise then the average person.... etc..... Sometimes I am embarrased to say I have CF when I see how much ppl my age are suffering....and in general how well I am doing... I feel so guilty

I am mostly excited about the chance for CF to get recognized with the doctors but also for the doctors to realize that they need to listen to their patients or it could cost them their life....

Anyway... we can plan a big lunch or something afterwards.. and Jeanne I can bring or you can bring some CF.com Pens..if you send them to me I will hand them out or something.... ..


Fun... I hope I get to meet a lot of you guys....

Jennifer
 
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