Re: Possible trigger... Not sure... I'm stressed...

[Guest guest]

hi skylar... Sorry you are going through so much.. I dont think anyone really

GETS IT unless they have what you are going through. Its sad but true. Maybe

print some info up on your situation and have them read whats going on, maybe

that would help. im going through some of the same. I hope you feel better

soon... ive had many days ive just talked to people on this group and felt much

much better. its nice to have people around that totally understand, because how

many people in your normal everyday life do you know that has the same thing as

you do... well here is where we are... they have helped me very much and i know

it will help you also... take care debbie

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[Guest guest]

Dear Skylar,

I haven't posted much lately, but I read your post and just had to

reply. It's so much harder on us when our family members don't

understand what we're going through, and to just casually dismiss

your lupus as though it weren't anything is so wrong! I have

Dercum's Disease, FM,and MS, but to outward appearances, I

am " normal. " You know, the old " but you don't look sick " thing.

Fortunately, my husband of 30 years understands, and moreso since he

was diagnosed with Parkinson's disease. We both have our challenges,

and have learned to be patient with each other. I don't know what

things would be like if we were younger and still had more of our

family. But I do know that my 2 older brothers have pretty much

written me out of their lives, as they can't accept a younger sister

who is not in good health. We've lost what we thought were friends

because of our inability to keep up an active social life (so they

weren't really friends, right?)

Believe me, I know what stress can do to you. Our daughter is going

through a divorce right now, and her husband left her with 4 small

children (2-year old triplets and a 5-year old.) In addition to

financial assistance, Ron and I are providing daycare, and most days

I border on exhaustion and just have to try to forget the pain as I

care for these precious little ones. Our daughter is aware of our

health problems, but at this point she doesn't always remember.

Maybe giving your dad and father in law some printed information on

lupus would help, but it sounds like they are closed-minded. You and

Wyllow (what a pretty name!) may just have to concentrate on living

your life on your own terms and not worry what these guys think.

Maybe you can find some help from a local organization that helps

disabled people find jobs--they could find you something that helps

pay the bills, but won't be as stressful. Maybe something that you

can do at home?

sorry this is so long, but I just wanted to let you know that I care,

and so does everyone here--we know what you are going through.

Judi in Indiana

60 yo wife, grandmother