They don't get it...

[Guest guest]

I'll add my 2 cents here--it is sad that we have the double burden of

having to endure the varying pain and disabilities we have, without

having to keep quiet and try to act like there's nothing wrong!! I

got the same story about " why don't you do more things with the

grandchildren? " Well heck, they are 2 1/2 and 5 (for those who don't

know me, the triplets are 2 1/2, and TJ is 5) and just taking care of

them for a few hours at their house once a week is enough to wear me

out! I know with kids they just don't want to see their parents as

ill or needy, but my daughter and SIL understand that my husband is

not in the best health (he has Parkinsons) but they can't grasp the

fact that I'm not on top either. I have to try to keep quiet around

Ron and not complain too much because the stress causes his PD to

flare, and I still do most of the cleaning, cooking, and yard work.

The kids don't even offer to help ( " we've got so much to do

ourselves " ) but there will come a day when I can't do it any more.

We had friends (guess they really weren't friends) who dropped us

when I couldn't have them over for dinners and late-night visits, and

one woman at church insists that since SHE has fibro and exercise

helped her, it should help me. I can't get people to understand that

Dercum's is NOT fibro, only LIKE it, except that the more I exercise

the worse it gets. I finally got the therapists to understand that,

and they ended my PT on my shoulder yesterday; the therapist said

that is probably as good as it's going to get, given the number of

tumors in my shoulder and armpit area.

Thanks for giving me the chance to vent where it's not possible for

me to do it otherwise! Tess, and all the rest of you, you do know

what it's like, and that's the benefit of this group.

Judi