Lupus

[LiberalElite]

I don't suffer with lupus; I first heard of it when I read about the author Flannery O'Connor who had it. A coworker's husband also had it. Just posting because I think this is an informative article for the general public.

http://narrative.ly/aint-i-a-woman/living-with-lupus/

As a child, Sandra Bettinger, now 55, was never allowed to use her lupus as an excuse for anything.

On school mornings, if Bettinger was feeling fatigued or simply didn’t want to deal with bullying classmates mocking her swollen body, she would desperately devise a plan to stay home. Standing in front of the air conditioner, shivering, she would hope for little white polyps to form on her tonsils or some other physical signs of her illness to appear.

“Look Ma,” Bettinger would say in their absence, hopeful she could pull off the ruse. “I’m sick.”

[NightWatcher]

1. Thanks for that.

Ah Lupus, the disease where you look ok on the outside to most people but when it gets to the place where you look like shit, you're in a world of hurt.

I haz a lupus too.

[LiberalElite]

2. more people should know about this

As the MTA (NYC mass transit) says in posters re: disability - not all disabilities are visible.

[Warpy]

3. My best friend always knew when I'd end up in the hospital

fighting one disaster or another because my cheeks would get dark pink and everybody else would think I was looking healthy for a change. It just signaled a bad flare and some sort of weird thing it took doctors a while to figure out.

I've always resisted the lupus diagnosis because I never thought I was quite that sick. I knew I had lupus-lite, Sjogren's, because a biopsy had confirmed it. When I look back over all the horrible things that have happened over the years, I'm not quite as sure.

I wish this article would get read widely, it explains so much about all of us living with a bowlful of alphabet soup chronic illnesses.

I'm a champion isolator, I just hate trying to plan things, being out of spoons that day and having to cancel. Civilians don't understand that we're not blowing them off, we're sick.

And I agree with Bettinger. It hurts to live.

[RosieS57]

4. I'm a Lupie

...and RA and fibromyalgia among other things.

Not doing so well because Hubs and I are downsizing - moving from a single family house to a "manufactured home".

It is 25 to life for premeditated murder or I would be a widow. My Hubs lost my last Orencia injectable and I was left with Enbrel. I had myself switched from Enbrel because it doesn't hardly work anymore. I am in for a ruff week, therefore, and have been crying off and on this evening.

But it will be better.

I keep reminding myself that only a dozen years ago this disease was barely survivable. So, could be worse; could be dead.

Regards from Rosie