You will find here, as you skim,
No kidney failures, nothing grim;
This is a case of “lupus light”:
No rushing to E.R.s at night.
And yet, with just a gentle brush,
Of lupus life and lupus touch,
Please understand why we go wild,
If others call our problems “mild”.
This is that last
lupus gets on.
You can tell it’s a
See the sore feet,
weak little invisible
arms, only one eye
able to open, and
obvious hair loss?
Poor little lupie.
Lupus is called an “autoimmune” disease because the immune system, which should attack the body’s bad guys, attacks the “self” instead (auto = self).
Babe, the woman featured in this history, really dislikes this term.
Immune means protected. To Babe, autoimmune sounds like something that protects the self, instead of hurting it. This history uses her preferred term AUTOCIDAL: The body’s defenses are trying to kill the body!
Autocidal is sometimes used to mean suicide by car, but it hasn’t been used very often for that. I would really like to start a movement to repurpose autocidal for lupus. And: Crohn’s disease, multiple sclerosis, Sjogrens…all the fun ways our own bodies try to MURDER us.
Lupus is one of the “invisible” diseases:
You can look perfectly fine and healthy to others when you are having all sorts of painful, uncomfortable, or just embarrassing or creepy symptoms.
Where perhaps things began to go awry.
Living in Columbus, Ohio in 1979, Babe had felt quite healthy. She took walks almost daily in a nearby nature preserve, and every night after dinner, she and her partner took an after-dinner walk lasting over an hour. In Babe’s last year in Ohio, she had added running from 3-5 miles a day after work. (All right, it was mostly a jog, and usually closer to the 3 than the 5. Jeesh!)
There were some niggling problems during those years:
• Babe kept having infections which caused bleeding into her urine.
• She kept having severe weeks-long bouts of bronchitis.
• Every night after running, one of her knees would swell to twice its size.
Where Babe noticed a teeny-tiny nothing.
It was 1981. Babe had just moved to Los Angeles and found a really nice apartment in Mar Vista (“Sea View”). There was a sunny courtyard with a beautiful clean pool, and glorious purple morning glories just outside her window.
There was the lovely whooshing sound of the nearby ocean. (Even after Babe found out that it was the whooshing sound of the nearby freeway, she pretended it was the ocean.)
On her first day in the new apartment, she lay down on her new bed to relax. Hmmm…that was odd: The back of her head hurt like there was a large bruise on it, on one side. She didn’t remember bruising it. Oh, well, it would go away.
It didn’t, but she got used to it. It made her feel like The Princess and The Pea.
Why is the bruise on only one side?
Why not just sleep on the other side?
Can cars really sound like the ocean?
Part 2, In Which Babe Gets Some!
I have not had writer’s bloc(k), but posting block: I’ve written, but been afraid to post what I’ve written. So I am copping out and re-posting content I first posted nine years ago on my first site written in Yahoo Site Builder. I haven’t planned this out as far as re-editing, or where I’ll stop between the old sections to make the new posts–just going for it. Don’t even know how the story will end. It may simply peter out.
Part 2, In Which Babe Gets Some!