Re: disease or disorder?

September 5, 2001

wrote :

do you think you have a disease or just a genetic disorder?

I replied :

Well, If I only have a choice of two names I'll take the GENETIC DISORDER. I

cant imagine my career would improve if I went round telling clients I have

a DISEASE . The word DISEASE to most people means 'CAN BE CONTRACTED BY

SHAKING MY HAND '

I dont tell people anything about my personal life unless they ask, and even

then I down play what NF is all about. This is all they really want to hear

it anyhow.

Me from here .

September 5, 2001

thats a very good point, if you told the average joe schmoo all the potential

problems of NF2 they'd run fast and far. I can't imagine telling my co workers

about this, other than people who really care about you, they just cant or do nt

wantto know!

Marcus wrote:

>

> I dont tell people anything about my personal life unless they ask, and even

> then I down play what NF is all about. This is all they really want to hear

> it anyhow.

> Me from here .

>

September 5, 2001

When they ask, (usually co-workers who are at least semi close, I don't go

telling it to everyone ) I usually tell them it's a Genetic Disorder that

causes non cancerous tumors that grow on your nerves. Which means they can grow

pretty much anywhere. It's what caused me to go deaf and I do have to have

surgery occasionally but it's generally not a big issue.

To which they usually reply.. Ohh I'm sorry, if there's anything I can do to

help please ask. and that's about the end of it

Pete

On Wed, Sep 05, 2001 at 07:52:28AM -0400, Henrion wrote:

> thats a very good point, if you told the average joe schmoo all the potential

> problems of NF2 they'd run fast and far. I can't imagine telling my co workers

> about this, other than people who really care about you, they just cant or do

nt

> wantto know!

>

> Marcus wrote:

>

> >

> > I dont tell people anything about my personal life unless they ask, and even

> > then I down play what NF is all about. This is all they really want to hear

> > it anyhow.

> > Me from here .

> >

September 5, 2001

I agree with you, . I've never thought of it as a disease either. I

always refer to it as " the neurological disorder that I have. " I've heard

some people talk about when they found out they were sick (diagnosed with

NF2) and I've never felt that NF2 was a sickness. I've had problems caused

by NF2, but I don't think of myself as sick just because I have NF2. I'm

usually " sick " when I'm on the steriods after a surgery though.

na

disease or disorder?

I gotta say something that has long plaqued me. Do you really feel

" diseased " with nf2? I keep hearing disease over and over. I have never

felt diseased, I equate diseased with someone whose body is riddled with

AIDS or cancer, or hepatitus c, or infections etc. NF2 has affected me,

I'm deaf, my right hand is near gone, left weakened, I walk not so

great, leftfoot is dropped, have various tumors here and there, but yet

..... I dont think of myself as diseased. I even consider myself the

epitome of health aside from these tumors because i exercise, eat well,

have a strong immune system and try to strengthen the muscles i have. I

see people hacking up phlegm while they puff away on cigaettes or

destroy their liver with booze and it sickens me, i feel in my heart i

am much healthier than them. so how do you see yourselves, do you think

you have a disease or just a genetic disorder?

September 5, 2001

let me agree one more time then I'll shut up :-) yes, it makes me cringe when I

hear " When I 1st became sick with nf2 " , Ive never felt sick, just affected. But

yeah I think when we are puking from steriods or those first awful days after a

surgery, thats sick. but general living with a weak leg, deafness or chronic

pain is not " sick " just a chronic pain the butt.

who's not 100% but not sick :-)

" Finch, na " wrote:

> I agree with you, . I've never thought of it as a disease either. I

> always refer to it as " the neurological disorder that I have. " I've heard

> some people talk about when they found out they were sick (diagnosed with

> NF2) and I've never felt that NF2 was a sickness. I've had problems caused

> by NF2, but I don't think of myself as sick just because I have NF2. I'm

> usually " sick " when I'm on the steriods after a surgery though.

>

> na

>

> disease or disorder?

>

> I gotta say something that has long plaqued me. Do you really feel

> " diseased " with nf2? I keep hearing disease over and over. I have never

> felt diseased, I equate diseased with someone whose body is riddled with

> AIDS or cancer, or hepatitus c, or infections etc. NF2 has affected me,

> I'm deaf, my right hand is near gone, left weakened, I walk not so

> great, leftfoot is dropped, have various tumors here and there, but yet

> .... I dont think of myself as diseased. I even consider myself the

> epitome of health aside from these tumors because i exercise, eat well,

> have a strong immune system and try to strengthen the muscles i have. I

> see people hacking up phlegm while they puff away on cigaettes or

> destroy their liver with booze and it sickens me, i feel in my heart i

> am much healthier than them. so how do you see yourselves, do you think

> you have a disease or just a genetic disorder?

>

September 5, 2001

----- Original Message -----

let me agree one more time then I'll shut up :-) yes, it makes me cringe

when I

hear " When I 1st became sick with nf2 " ,

who's not 100% but not sick :-)

======================

I'm guilty I guess bc I say " when I first became sick with nf2 " . When you

walk into a hospital a perfectly normal 17 yr old, then are plunged into a

half-paralyzed (stroke) 92 lb. weakling almost overnight, throwing up bile

for weeks bc you can't eat anything, well, I'd still say I was very " sick "

at that time. When you recover in a year only to go repeat it all again with

my AN #2, and never walked without a walker again bc you have yet another

stroke. When that is your very first experience at this disorder it's hard

to separate that experience from the word " sick " . Not until this recent

surgery I had, and my c-spine with Epstein, did I feel not sick when nf2

made its presence known. I think it has alot to do with what your

experiences were when it first hit you.

Jennette who is, with modern medicine, not very sick now.

September 5, 2001

Pete, I do the same. People have to ask me first what happened. It usually

starts with, " Gee, you talk and you don't sound like a typical deaf

person?? " Then I'll explain I became deaf through begnin/non-cancerous

tumors. I've found out that if I'll say anything with the word " disorder " or

" neurological " they'll treat me like some kind of idiot! You all probably

have experienced the whole schpiel of " oooooooooooh I'mmmmmmmmmm

sooooooooooooooooorrrrryyyyy " *over emphazing lips*

Well, that's my take anyways.

Mark

----Original Message Follows----

When they ask, (usually co-workers who are at least semi close, I don't go

telling it to everyone ) I usually tell them it's a Genetic Disorder that

causes non cancerous tumors that grow on your nerves. Which means they can

grow pretty much anywhere. It's what caused me to go deaf and I do have to

have surgery occasionally but it's generally not a big issue.

To which they usually reply.. Ohh I'm sorry, if there's anything I can do

to help please ask. and that's about the end of it

Pete

On Wed, Sep 05, 2001 at 07:52:28AM -0400, Henrion wrote:

> thats a very good point, if you told the average joe schmoo all the

potential

> problems of NF2 they'd run fast and far. I can't imagine telling my co

workers

> about this, other than people who really care about you, they just cant

or do nt

> wantto know!

>

> Marcus wrote:

>

> >

> > I dont tell people anything about my personal life unless they ask, and

even

> > then I down play what NF is all about. This is all they really want to

hear

> > it anyhow.

> > Me from here .

> >

September 5, 2001

ark,

Recently when explainig itto casual acquaintences I just say " genetic fluke " but

I really wantt o say " f#@!$ed up genes! "

Mark Sarmac wrote:

> Pete, I do the same. People have to ask me first what happened. It usually

> starts with, " Gee, you talk and you don't sound like a typical deaf

> person?? " Then I'll explain I became deaf through begnin/non-cancerous

> tumors. I've found out that if I'll say anything with the word " disorder " or

> " neurological " they'll treat me like some kind of idiot! You all probably

> have experienced the whole schpiel of " oooooooooooh I'mmmmmmmmmm

> sooooooooooooooooorrrrryyyyy " *over emphazing lips*

>

> Well, that's my take anyways.

> Mark

>

> ----Original Message Follows----

>

> When they ask, (usually co-workers who are at least semi close, I don't go

> telling it to everyone ) I usually tell them it's a Genetic Disorder that

> causes non cancerous tumors that grow on your nerves. Which means they can

> grow pretty much anywhere. It's what caused me to go deaf and I do have to

> have surgery occasionally but it's generally not a big issue.

>

> To which they usually reply.. Ohh I'm sorry, if there's anything I can do

> to help please ask. and that's about the end of it

>

> Pete

>

> On Wed, Sep 05, 2001 at 07:52:28AM -0400, Henrion wrote:

> > thats a very good point, if you told the average joe schmoo all the

> potential

> > problems of NF2 they'd run fast and far. I can't imagine telling my co

> workers

> > about this, other than people who really care about you, they just cant

> or do nt

> > wantto know!

> >

> > Marcus wrote:

> >

> > >

> > > I dont tell people anything about my personal life unless they ask, and

> even

> > > then I down play what NF is all about. This is all they really want to

> hear

> > > it anyhow.

> > > Me from here .

> > >

September 5, 2001

An alternative to disease or disorder, neither of which I normally use? I tend to refer to it as a syndrome.