Before this post is through, there will be love, marriage, cursing, spitting, and…MURDER. (If you missed Part 1 of our exciting and gross-but-still-riveting story, here it is.
Oooo…First, Babe Gets All Hot and Sweaty
One night, Babe woke up in a puddle.
You’d Better Not Be Laughing To Hear I Sweat the Bed.
At first, she thought she had wet herself, but it turned out that she had sweated so much that her perspiration had actually made a puddle on the all-foam mattress. And she was still sweating. (At half the age for hot flashes.)
Then she got the shakes until her teeth chattered–probably from the fever. It reached 104, just like when she had the pinpoint rash. Joe sat by. There wasn’t anything he could do.
From that night on, although the high fever didn’t return, Babe continued to get night sweats, often waking in a cold, wet pool.
What is wrong with this girl?
Why do you think she doesn’t she see a doctor this time?
Get Ready…Here Comes the Action:
She was being stabbed! Babe saw the knife go into her chest when her killer punched it hard through her breastbone. She felt the horrified shock of seeing it sticking out of her body. She felt the pain worsening.
Every single night, for the next year, Babe was killed repeatedly in her dreams. Some people say you can’t die in a dream. Wrong.
She’s driving a car, flooring it, madly changing directions, but it’s no use: They catch up, and shoot her through the glass.
She’s racing down a cement-walled stairwell so fast she’s scared she’ll trip. Her heart is pounding so hard with fear and panic, she wonders if her chest will burst.
No use. They swing around the landing above her and open up on her with a machine gun. It hurts so much!
Even while she sees her blood pouring out of her chest–even through her tremendous pain–she’s focussed on her heart, still pounding wildly. But slowing down quickly now… Stopped.
Someone’s Dream-Weavers Watched WAY Too Much 80’s Television
Of course Babe didn’t go to a doctor! She didn’t want to be labeled crazy.
Do you think this girl IS crazy?
First Comes Love, Then Comes Marriage
Where Babe gets headaches, hip-aches, and pees a lot.
Babe and Joe got married in 1984. Whoo-hoo! For their honeymoon, they went on a three-week truck-camping trip up the California coast and back down its middle.
Right away, Babe was having terrible difficulties:
For some reason, she had to pee several times every night, which meant climbing over the truck liftgate and stumbling around to squat in the dark and cold.
She had trouble balancing when she first woke up, which made it challenging to miss her feet.
Like This, But In the Dark.
When she woke each time, her eyes were swollen, and so dry that her lids stuck to them.
Much of the time, she had the most horrible headaches she could imagine–far worse, even, than the awful ones she’d had upon first moving to California.
On top of that, whenever she sat or lay down, her hips hurt deep inside, in their very core. The camping mat didn’t help at all on the corrugated truck bed, and no position brought any relief.
Babe often lay awake silently next to her happily-snoring new husband, suffering for literal hours in the most unbearable pain.
Each day, while Joe was driving into the rising sun, Babe’s head felt like it was a delicate glass shell barely containing her entire self comprised only of her headache. She turned her face away from Joe, leaning it against a pillow on the truck window.
Only rarely would the intense pain from her seated hips distract her by reminding her that they happily lay in wait, in case her headache chose to step aside.
Babe didn’t want to spend their honeymoon complaining to Joe, so she didn’t. She wasn’t being brave:
Babe hid her pain like an abused kid.
Do they make violins small enough?
Does Babe’s martyr complex ever make you wanna pop her one? (C’mon: At least give her a good shake?)
Just SEE How I Suffer So.
Her Crowning Glory Abdicates
[when a ruler gives up her/his throne]
Where Babe imitates a dog.
In 1985, Babe and Joe bought a fixer-upper house in a very rough neighborhood (with an eye to profit).
The house’s previous owners were far from clean. When Babe had first swept out the rooms, she’d been disgusted at the huge clumps of the wife’s long black hair. Yuchh!!!
What goes around comes around. Within weeks of moving in, Babe was waking up with her own hair on the pillow. Lots of it.
It was summer, so the newlyweds made jokes about how Babe was shedding like a dog, but Babe wondered what the heck was going on. She was starting to get a little worried.
When she next got crusty, peel-y, scabby things on her scalp, even Babe thought she was gross. Where each thing fell off, it left a small bald patch.
She tried different styles to cover the bare spots , but finally gave up and cut it all short. It was a new look for her, but definitely fit the neighborhood.
Babe’s Bald New Look
This girl is only STARTING to worry?
Does she seem a little slow to you?
“You’re just getting that now?”…..(First Draft’s Version: “No sh#t, Sherlock.”)
Leave the Room, Kids—Psychotic Alert!!
Where Babe imitates a son of a dog.
Apparently, fate didn’t want Babe to get too comfortable. Along came a new symptom to keep the gods amused:
Fury! Babe had always had a temper, but now, when she lost it, she’d use the “f” word ten times in as many seconds.
This just wasn’t her. She began to refer to this as the “F*ck Index” of her health. But that’s not the really bad part.
During these wild periods, Babe had a scary urge to do something she wouldn’t admit to anyone: To spit! Spit right on the floor!
Let Me Just Say The Internet Is One D#mned Impressive Place.
What was HAPPENING to her? The feeling was so strong that she sometimes had to give in. Then, embarrassed and afraid, she’d cry while she wiped it up.
Between the murderous nightmares, the cursing, and the spitting on the floor, Babe was positive she was going crazy.
Show of hands: Who agrees Babe should pack her bags
and head for the cracker factory?
You Even Got the CHILDREN To Go Along? That’s Just Cold.
I know I’ve been away from all your blogs–Apologies!–and my own–deepest apologies to my fantastic readers and commenters.
Mostly just exhausted, and going to sleep right now, actually. Will spring back later today and do some catching up.
Posted by Outlier Babe on 2015/05/25
If you missed earlier parts of our exciting and gross-but-still-riveting lupus story (and why did you? shame on you!), you’ll just have to turn your back on Netflix for fifteen minutes while you catch up. Think you can handle it? Here you go, hon: Part 1, In Which Babe Feels a Pea.
The Eat-Everything-You-Want Diet
Where Babe hits it lucky.
Babe had donated blood regularly back in Ohio, and she assumed she’d do the same in Los Angeles. She was surprised when she went to donate. They turned her down!:
“You have to weigh at least 100 pounds.”
Babe laughed. She told the donation lady that she had weighed the same since college–123, and at her 5’7″ height, a weight she was really happy with. She never had to watch what she ate, and she had a huge appetite. She was just born lucky.
The lady made Babe step on a scale. Surprise! While she did weigh more than the 100-pound minimum, she was down to only 110. She now weighed less than the 117 she’d weighed entering high school.
No WONDER she’d dropped from a size 8 to a size 4…
West Coast Men Found Her New Emaciation SEXY
How can WE catch lupus?
Where Babe gets a little clumsy.
Babe and her boyfriend moved in together. They were happy.
One day, while Babe was washing the dishes, she watched as a glass fell out of her right hand. It didn’t feel like it had slipped. It felt like one minute she was holding it, and the next she wasn’t. Two days later, it happened again. That definitely seemed odd. Twenty-so years of washing and rinsing dishes since childhood, and never a broken one. Now, two glasses in two days.
Then, Babe started losing her balance. She’d be walking across the living room and suddenly stagger slightly as she counterbalanced to save herself from falling.
That was also odd.
Why doesn’t Babe just get a dishwasher? (And a cane?)
The Rushing Rash
Where Babe takes a vacation and gets a surprise–What fun!
Babe’s girlfriend’s boyfriend had a pilot’s license. So the girlfriends and their boyfriends decided to split the cost of a small plane rental, fly up to Santa Barbara for the weekend, and pretend to be rich people. Cool!
It’s Just A Crumbling Church Built Out of Mud. How Nice Could It Be?
As soon as they got there and checked into the hotel, though, Babe didn’t feel well. She had a splitting headache, and she felt hot. She lay down on the bed.
Her eyes felt funny. She reached up to rub them, and they seemed all…bumpy. Babe went into the bathroom and turned on the light. Her eyes were entirely covered with tiny red blisters!
This girl flies in private planes to rich
resort communities and we’re
supposed to feel sorry for her?
The Pokey Pins
Where Babe gets oozy and crusty.
Over the next hours, Babe’s fever rose to 104 and the blisters spread to her hands, arms, and body. They were as small as the head of a pin.
When They Say Pinpoint Rash, Here It Is
Every single one felt like a needle was stabbing into her. When a blister broke, it left a little pit. Where there were clusters of them, they joined together in big sores, and oozed gunk that dried and got all crusty. It was disgusting.
Babe didn’t want to spoil the nice weekend for the others. She stayed in the room, curtains drawn, burning with fever, suffering with the headache, and hurting terribly from the rash. Her boyfriend brought her cold washcloths.
She didn’t eat anything from Friday night until Sunday morning, when it was time to leave. By then, her eyes were entirely crusted over and unable to open to more than slits. They hurt a lot.
Wasn’t the boyfriend worried about catching it?
The Second Disappointing Rash Doctor
Where Babe gets more top medical advice.
Babe hurried straight to another top-ranked dermatologist at Cedars Sinai. His diagnosis?
“Some new kind of eczema,” he pronounced, and sent her home with a cream. He had no comment on the eye involvement.
Some NEW kind of eczema?!
If that’s what he thought, why wasn’t he, trained to know everything there was to know about the skin, at all interested in a brand-new skin ailment?
Babe decided to see help elsewhere.
(Hint: Not “Please.”.)
Does this guy seem as much of a joker to you as he did to Babe?
The Helpful Student Clinic Doctor
The Disappointing Famous Eye Clinic Doctors
Where Babe’s dad may know more than her doctors.
Babe went to the Student Health Clinic. The doctor was a warm islander who was clearly shocked by Babe’s oozing, crusty appearance and slitted eyes. She immediately referred her to The Famous Eye Clinic.
The Famous Eye Clinic doctors looked at Babe’s eyes and went away and got more doctors and they all murmured among themselves and looked at her eyes some more.
Experts In Their Field
At the end of an hour, they had decided:
“You have some kind of adenovirus [ADD’no-virus–“ear, nose, and throat thing”]. It will clear up on its own.”
Did This Qualify As a Literally-Comical Eye Exam?
Babe phoned her 80-year-old dad. He said:
“Horse poop. It sounds to me like herpes. Shingles.”
Who sounds like they know more: The eye experts, or the dad?
You know how guys’ hands immediately stray south when another guy gets hurt down there?……….You think things woulda’ gone better had the docs gotten close enough to LOOK at Babe’s blistered blinkers?
The Eye Scare, and Two Helpful Eye Doctors
Where Babe gets scared. And scarred.
Three days after the visit to The Famous Eye Clinic, Babe woke up blind in her left eye.
She made her way back to the sympathetic island doctor,
Her Nurse Was Also Caring
who seemed absolutely disgusted with the famous clinic. This time, she referred Babe to an 80-year-old ophthalmologist on Wilshire Boulevard .
Doctor I. (eye know, eye know…but that’s really the initial!) immediately diagnosed ocular herpes. (Ewww!!)
He referred Babe to a specialist at the famous Cedars Sinai , who treated her successfully. Babe was left with only one oval scar on her cornea, just off-center, which luckily faded away over the next few years.
Babe found out that ocular herpes is the leading cause of blindness in young adults. (She’d never even heard of it–had you?)
An Annual Event
Where Babe becomes a calendar.
Exactly one year after the terrible, painful rash, Babe was shocked, frightened, and depressed when she woke up to discover she had it again.
……………”WHAT? Is That a SPOT I See?!”……………(Guess Doggy’s Name–Tee Hee!)
The year after that, the same thing happened. And the year after that. And after that. Every August, like clockwork, the rash would return.
However, the bright side was that each year it was less severe and less widespread. After several years, it settled down so much that Babe would get only the horrendous headache, and a sore or two on the outside corner near her left eye. Thank goodness.
What was it that happened in August that triggered this?
Are we ever going to hear the answers to all these dumb questions?
Lupus folk are particularly susceptible to the herpes virus. Maybe this is why the calendar effect occurred–If herpes IS what the skin rash was. Maybe this is also why Babe also got the ocular herpes twice more. One of those times her optometrist noticed it when both Babe and her Famous Private University (mis-)managed-care opthalmologist hadn’t. Thank you, Dr. K.3!)
Posted by Outlier Babe on 2015/05/14
Part 3, in which Babe develops a lifetime fear of tasty pastry.
If you missed Part 2 of our exciting and gross-but-still-riveting lupus story (and why did you? shame on you!), you can read it here. If you even missed Part 1 (zut alors!!), I understand why you’re not yet showing your face in public, but–sweet relief–here is your remedy.
The Helpful Cramps Doctor
Babe told her gynecologist about the cramps during sex. He was both sympathetic and fascinated.
“Right when you come? And he’s average-sized down there? I’ve never heard of this one before! Every time? That has to be terrible! I can’t imagine– I’m really sorry, Babe.”
He did have a suggestion, though:
“Look, Babe, I don’t know if this will work, but menstrual cramps are uterine contractions, just like labor pains. Both are caused by prostoglandins [PRO-sto-glan-dins]–birth hormones.
You can try taking Naproxen, an anti-prostoglandin, a half hour ahead of when you plan to have sex. See if that helps.”
It worked–Yay! Now Babe could once again enjoy sex—as long as it wasn’t spontaneous.
An added bonus was that this was the first drug that had ever put a dent in Babe’s monthly menstrual cramps.
Thank you, Doctor K.!
The Disappointing Rash Doctor
Where Babe gets a rash. Big deal.
Rats! Babe had the rash on her forearms again.
Babe had been the Rash Queen, growing up. Red, scaly hands. Big pink patches on the fronts and backs of her knees and the insides of her elbows and forearms. Itchy, itchy days and nights.
She even had to sleep with socks on her hands, to try to stop scratching in her sleep.
When the rashes cleared, they left behind white areas that wouldn’t tan. In college, thanks to make-out sessions, her mouth and chin looked a lot like Fred Flintstone’s. She was so embarrassed.
This time, Babe took herself to the famous Cedars Sinai and saw a highly-recommended dermatologist-to-the-stars.
He took a quick glance, told her it was eczema, and gave her a cream. It had no effect, which she reported back to him, to his total disinterest.
Tough luck, Babe.
Is this how that Oath goes?: “If at first you’ve done no harm, don’t try again.”?
The Helpful Rash Doctor
On her next appointment, Babe’s helpful gynecologist noticed her rash and asked her about it. Babe told him that a dermatologist at Cedars had told her it was ezcema, and had given her a cream that hadn’t worked.
“Well”, said the gynecologist, “My brother is a dermatologist—why don’t you try him?”
The gynecologist’s brother gave her an ointment that knocked the rash out flat.
At last, the itching had stopped. Yay! Now Babe could once again lounge in the pool or at the beach without embarrassment. This was the good life.
Thank you, Doctors K.!
Come For Our Pie, Stay To…DIE! Bwah-ah-ah!!
Where a tasty potpie causes a minor bump in the glorious road of life.
Babe and her boyfriend had gone out to relax at a restaurant famous for its pies. Babe ordered her favorite: Their awesome chicken pot pie: Yum!
The instant she took the first bite, though, she suddenly felt deathly ill. They left immediately.
As soon as they arrived home, Babe rushed into the bathroom and vomited over and over into the sink, horrified to watch the bowl fill with blood.
She was really scared for a minute. But after Babe remembered the phrase “bleeding ulcer”, she reasoned that her stomach pains and tonight’s bleeding were simply due to one.
Although she did at least decide to make a doctor’s appointment, Babe was mostly upset that she couldn’t face her favorite dinner ever again.
Who knew a potpie could be dangerous?
The Disappointing Tummy Doctor
Where a doctor is unhelpful.
The doctor listened quietly as Babe described her history of severe stomach pain, and the incident of vomiting blood.
Babe mentioned that her boyfriend had been having some recent stomach pain, although not as severe as hers–she joked about it running “in the family”.
The doctor ordered blood tests, stool tests, and a barium X-ray. Afterward, he met with Babe and told her that there was no evidence of an ulcer.
He did find Salmonella bacteria and the Epstein-Barre virus, but didn’t think those were responsible for her symptoms.
The doctor suggested that the stomach pain might be due to stress, and that Babe should try to learn to relax. He also didn’t think her headaches were anything to worry about.
Since the doctor didn’t seem concerned, Babe went home, disappointed that she would still be in pain.
Between her fatigue, and the awful head and stomach pains, she felt trapped.
Just wait ’til you hear what happened next.
Disappointing? Make That Infuriating
Where a doctor can be worse than unhelpful.
Babe’s boyfriend went to see the same doctor. Exactly as with Babe, the doctor ordered blood tests, stool tests, and a barium X-ray. Exactly as with Babe, none the tests showed anything. So…The doctor wrote the boyfriend a prescription, and ordered MORE tests.
Babe was incensed. She phoned the doctor and asked:
“Why, when my tests showed nothing, did you do nothing, but when my boyfriend’s tests showed nothing, you did something?
I was the only one who vomited blood!
Why did you write him a prescription, and order him more tests, but do nothing for me?”
The doctor said Babe sounded over-tense. He suggested that she might want to “find someone to talk to about that”.
How would you feel if a doctor did this to you?
Who thinks I should publish the name of this doctor?
Some sources say Naproxen and other NSAIDs aren’t effective taken such a short time ahead of prostoglandin activity. Perhaps the pill helped my cramps only as a placebo. Which would mean the useless Pamprin and Motrin recommended previously worked as…non-placebos?
Posted by Outlier Babe on 2015/05/07
Not in the first paragraph, you greedy goat! Just wait for it…
(If you missed Part 1 of our exciting and gross-but-still-riveting story, here it is.)
Where Babe gets weirdly tired and it isn’t normal, but she brushes it off.
Running in Los Angeles was a very different experience than in Ohio: Ohio had been flat as a pancake, but Babe’s new route took her up towards Beverly Hills.
You’re Picturing Glamor. Instead, Roxbury Park Was a Charming Neighborhood Family Park (Now Cookie-Cutter and No Longer Charming)
When Babe had trouble completing her usual distance, she ascribed it to the hills. But soon, Babe began to have trouble completing even a mile. She’d try to push herself, but find that she literally couldn’t take another step. She’d wind up sitting on a curb in front of someone’s house, waiting for enough energy to slowly walk back home.
Why Was This Happening?
Babe was really disappointed that her hard-won exercise habit had to stop. She blamed it on the famous L.A. smog, but wondered if that was all it was. Still, the sunshine every day made up for a lot.
Where Babe gets really, REALLY tired, and headachy, but still does squat about it.
There is nothing like living in sunshine and having a pool to swim in each and every day. Babe was working nights as a programmer, and had all day to lounge on a raft in the pool. Bliss! She couldn’t have been happier.
Babe slept when she came home until the sun rose. Then, she’d get up long enough to put on her suit, and move to the raft to finish her “night”.
I Remember the Bliss
That left her the whole afternoon to visit with new friends, shop, or whatever.
Pretty soon, though, Babe found that she was sleeping more and more. She was sleeping so much and so hard that she was having trouble waking for work. She began to have trouble staying awake at work.
And she began getting these awful headaches…
When It Was Really Bad, It Was Her Everything
Don’t you wish you were in a pool in the sun right now?
Where Babe gets a tummy ache.
(Where Babe gets a TUMMY ache? Are you for real?)
Babe was getting almost used to living with her headaches. Then, her stomach started to hurt. Very quickly, the problem got worse and worse. It hurt SO much, in a band right across her diaphragm–She often had to stop what she was doing and hold herself still and tight, and breathe carefully in little shallow sips of air until the pain passed.
Babe Didn’t Look This Attractive While Suffering.
Babe kept working, and kept sleeping her days away in the pool. Her head kept hurting, and her stomach kept hurting, but she didn’t go to a doctor. She just wasn’t the kind of person to go to a doctor for every little thing. She knew most things got better on their own.
Boy, Did Babe Pick the Right Street To Live On!
Would you have been smarter than Babe?
Where sex hurts. Now THAT makes Babe sit up and take notice.
When Babe wasn’t working or sleeping or aching, she found time to hook up with a steady boyfriend. They weren’t sharing an apartment, but they had gotten to the point where they sometimes shared a bed.
One day, just as she climaxed, Babe got a horrid menstrual cramp. Then, it clamped down and got even worse.
No, Guys: She Is NOT In Ecstasy At Your Awesomeness.
It was so bad that she couldn’t stand. Babe slid off the bed onto the floor, and, while her boyfriend asked, “What’s wrong? What’s wrong?” she crawled around the corner into the bathroom and vomited repeatedly from the pain. When she stopped, she was cold all over from her sweat. The worst cramps imaginable. And it wasn’t even her time of month.
From then on, whenever Babe came, so did the cramps. She could have sex, so long as she didn’t enjoy it too much.
Yeah, Baby–It Was the Best.
What’s the problem? I thought Babe wanted to be a nun anyway?
Posted by Outlier Babe on 2015/05/02
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:
No One Sees What’s Happening Beneath the Handy Shell
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?
The first of a multi-part series to be posted purty fast–on accounta’ it’s already written. Just gotta add some pics.
I copped out. 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 will probably simply peter out.
Posted by Outlier Babe on 2015/04/30