Re: Re: Family Support - Or Lack Thereof - dreamer

[Guest guest]

Once again folks, it all goes back to... " But you look so good. " I can't remember

how many times we

have discussed that phrase that we all hate. And the other one is...people

don't really expect

you to tell them when they ask, " how are you. " Half the time our docs don't even

believe what we

are telling them.

I have gotten to where I don't waste my time with the non-believers. Life is too

short to feel as

though you have to validate taking up space on this planet. I must say that when

my sister

apologized to me for not listening to me and believing what I said about my

medical condition, it

felt really good. We have a better relationship now and I don't speak of how I

am feeling to much

because I know that she is trying to understand.

You have gone through so much. You must be a very strong person but sometimes,

wouldn't it be

wonderful not to have to be the strong one? You go girl, and enjoy your life and

don't let all of

those meanies get you down!

--- dreamer_plus <dreamer_plus@...> wrote:

> It can be difficult. I think our culture has a hard time coping with illness,

and facing it.

> My friend has melanoma and she is dying. She is only 34 years old, and she

also has MS. Her

> folks refuse to even hear her on the phone, I think they just cannot face what

is happening to

> her, not at all, so rather then spend what time they can and have this awful

thing right in

> front of them, they now no longer even speak to her.

> When my husband was diagnosed with combat PTSD and Agent Orange cancers, my

family stopped

> speaking to us.

> Becuz of his illness he has not worked since 91. My RA hit and I had to also

stop working and

> friends often say to me, oh it must be nice to not work. This hurts me

something awful cuz

> since I was 12 years old I have been on my own and always worked 2 jobs- and

when my husband

> stopped working, I began to work 3 jobs as we have 3 kids and 2 are disabled.

> My stepfather was talking about 6 months ago and complaining about how

difficult it is to live

> on social security and Medicare. I looked at him and said um, yeah, tell me,

especially with 3

> kids. He looked at me and said How would YOU know? You are young...UG! Gosh

I had been

> telling HIM that for years.

>

> My friend with MS, (a different friend) complained to me one day about

difficulty using a

> telephone. I said oh, I use a headset, and then I do not have to try to hold

the phone, he

> snapped at me, how will THAT help? And How do YOU know? I tried to explain

that my wrists

> usually do not let me hold a phone to my ear -- he sure did not want to hear

it...

> Another friend said to me one day- if you are so darned sick, how can you go

to watch fireworks?

> I said well, my husband sets up my electric scooter, and I ride to where they

are. People seem

> to also think if you are sick, you maybe should lay down and never partake of

life again or

> something.

> Altho I DO get nasty looks from people when I use my scooter. Friends and

family find it

> embarrassing, strangers look at me and comment how young I am and how I should

push myself

> harder. My kids schools get extremely nasty when they want me to chaperone a

walking field trip

> and I ask if my scooter will fit on the bus and they say no- and I ask well

can I meet you at

> the destination? and they say no and then I have to say NO I cannot

chaperone---they get angry

> cuz gosh I am home, and I am young and what is this RA nonsense anyway?

> People do not understand and many do not want to hear it. ANd some people

hate if they are sick

> and someone else might be sicker.

> Our culture has a very difficult time accepting illness.

>

>

>

>

>

>

[Guest guest]

We hear that about my son to (the one struck by lightning). I just look at

someone who says that and say yes, he's not a crispy critter!

Becky

Re: [ ] Re: Family Support - Or Lack Thereof - dreamer

Once again folks, it all goes back to... " But you look so good. " I can't

remember how many times we

have discussed that phrase that we all hate. And the other one is...people

don't really expect

you to tell them when they ask, " how are you. " Half the time our docs don't

even believe what we

are telling them.

I have gotten to where I don't waste my time with the non-believers. Life is

too short to feel as

though you have to validate taking up space on this planet. I must say that

when my sister

apologized to me for not listening to me and believing what I said about my

medical condition, it

felt really good. We have a better relationship now and I don't speak of how I

am feeling to much

because I know that she is trying to understand.

You have gone through so much. You must be a very strong person but sometimes,

wouldn't it be

wonderful not to have to be the strong one? You go girl, and enjoy your life

and don't let all of

those meanies get you down!

--- dreamer_plus <dreamer_plus@...> wrote:

> It can be difficult. I think our culture has a hard time coping with

illness, and facing it.

> My friend has melanoma and she is dying. She is only 34 years old, and she

also has MS. Her

> folks refuse to even hear her on the phone, I think they just cannot face

what is happening to

> her, not at all, so rather then spend what time they can and have this awful

thing right in

> front of them, they now no longer even speak to her.

> When my husband was diagnosed with combat PTSD and Agent Orange cancers, my

family stopped

> speaking to us.

> Becuz of his illness he has not worked since 91. My RA hit and I had to

also stop working and

> friends often say to me, oh it must be nice to not work. This hurts me

something awful cuz

> since I was 12 years old I have been on my own and always worked 2 jobs- and

when my husband

> stopped working, I began to work 3 jobs as we have 3 kids and 2 are

disabled.

> My stepfather was talking about 6 months ago and complaining about how

difficult it is to live

> on social security and Medicare. I looked at him and said um, yeah, tell

me, especially with 3

> kids. He looked at me and said How would YOU know? You are young...UG!

Gosh I had been

> telling HIM that for years.

>

> My friend with MS, (a different friend) complained to me one day about

difficulty using a

> telephone. I said oh, I use a headset, and then I do not have to try to

hold the phone, he

> snapped at me, how will THAT help? And How do YOU know? I tried to explain

that my wrists

> usually do not let me hold a phone to my ear -- he sure did not want to hear

it...

> Another friend said to me one day- if you are so darned sick, how can you go

to watch fireworks?

> I said well, my husband sets up my electric scooter, and I ride to where

they are. People seem

> to also think if you are sick, you maybe should lay down and never partake

of life again or

> something.

> Altho I DO get nasty looks from people when I use my scooter. Friends and

family find it

> embarrassing, strangers look at me and comment how young I am and how I

should push myself

> harder. My kids schools get extremely nasty when they want me to chaperone

a walking field trip

> and I ask if my scooter will fit on the bus and they say no- and I ask well

can I meet you at

> the destination? and they say no and then I have to say NO I cannot

chaperone---they get angry

> cuz gosh I am home, and I am young and what is this RA nonsense anyway?

> People do not understand and many do not want to hear it. ANd some people

hate if they are sick

> and someone else might be sicker.

> Our culture has a very difficult time accepting illness.

>

>

>

>

>

>