Re: To Judi-Re: A very bad day...can anyone relate?

April 29, 2005

Hey Girls,

I have had the same experience. My daughter works in the health field and it

was very difficult for her to grasp the consept of her mother being disabled. I

have RA, Osteroporosis, OA and fibro. SHe does not understand any of these

diseases, she works in a cancer unit. But when I was battling breast cancer she

was right there every minute because she understood what was going on. I just

wish that more could be published or talked about these auto ammune diseases.

Education is the answer. Our loved ones need to learn about this so that they

are aware of what we are going through. My girl is getting better, she is

listening and reading. And that makes a lot of difference. Gentle hugs to all

of you. Judith Ann

pathinze <pathinze@...> wrote:

Dear Judi,

I know exactly what you mean about not getting any support from

your daughter. My daughter is an RN and when I told her I had RA,

her comment was " oh I get aches and pains too " . God Bless her heart.

My husband has had a cancerous tumor in his spine for two years and

he finally got so bad this past winter that he could no longer walk and

was in severe pain. He had the tumor removed but it has left him a

paraplegic since Nov. I am his, gosh, I don't know what to call me.

I take care of turning him every two hours (3 during the night) his baths,

his toilet, transferring him from his bed to wheelchair and back. Since we

live in a split level home and his bedroom was on the top floor, I put him in

the downstairs family room, one flight down from the kitchen. I serve him

his meals in bed, he seldom wants to get out of bed and sit in his wheelchair.

I do virtually everything that has to be done for him. Plus upkeep on the home.

I also I drive him to work every day and since it is such a long drive and he

only

works about 4 and a half hours I just wait for him in town. By the time I get

him

ready to go and in the van and to work, half of the morning is gone. I then get

to wait until 2:30 or 3 pm. and drive him 45 minutes back home. This just ruins

me doing anything constructive for the entire day. By the time I get him home,

out of the van, in the house and get him in bed, his cath., get him undressed,

hand

him the mail to read and bring him something to drink, it is time to think about

dinner.

I just can't ever say I am in pain and expect any consideration. If I tell my

husband

I am not feeling well he tells me to hurry and get him,,,whatever he needs,

before

I sit down. I just wish one day I could take care of me. I get so, so tired.

There ought to be a form to fill out for family too, don't you think Judi?

Any one else have similar gripes. Sure feels good to vent to people who

do know what I am feeling.

Hugs,

Pat

Message: 6

Date: Fri, 29 Apr 2005 14:27:45 -0000

From: " nonny46 " <nonny46@...>

Subject: Re: A very bad day...can anyone relate?

Lexi,

Well, I haven't worked except at church in over 5 years, but the one

person who seems to just shrug off my illness (fibro, Dercum's Disease,

and recently dx with MS) is my own daughter!! I think she just can't

handle the fact that her parents are getting older. I know she has a

lot on her plate with 4 kids and a job and going to college part-time,

but just once I wouldn't mind the tiniest bit of sympathy from her.

With your co-worker, I can't blame you for being snarky! There ought

to be a form that our doctors can fill out to tell our bosses and co-

workers exactly what we are feeling.

Take care,

Judi

April 29, 2005