Re: Family Support - Or Lack Thereof - dreamer

[Guest guest]

WOW, talk about timing, I just now finished reading " spoons " !! LOL Yup, I am a

Hospice Nurse and yup I say THAT all the time, Lifes too short. Thats why I

make a point to go out and do the fun stuff with my kids. Actually becoming too

disabled to work has given me a precious gift, were I still all so healthy etc I

would still be working those double shifts, instead I am spending time with my

wonderful kids and husband.

Nah, I hate being " strong " I think we all kind of live what we have been dealt-

I do not want tobe strong...you are right, if I had a CHOICE.....LOL- oh well, I

am not ready to give up my life even if I do have this dumb RA. ALl the RA

really did was make a few things a little different. Onward. :-)

(OK so I am not always quite in this mood, LOL..... but I try!)

It is so nice to have this group to come to. I feel like here people DO

understand. Thank you you guys!

- In , Iris Nosker <inosker@y...> wrote:

> 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@w...> 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.

> >

> >

> >

> >

> >

> >