A mystery: SOLVED! Women treated: SHABBILY! Bad medicine, and worse: BAD HAIR!
(If you missed the beginning of our exciting and gross-but-still-riveting story, here it is. It won’t take you long to catch up.)
A Helpful Rheumatologist—And a Diagnosis!
Where Babe learns a name for what’s been happening.
The rheumatologist, Dr. R., had Babe hold out her arms and push against his hands with his hands.
She was surprised by how challenging that turned out to be.
She lay down while he lifted up her legs to see how far they stretched. (Even though her hips hurt, Babe’s legs stretched far. Babe is naturally flexible.) He checked out her feet.
He pressed gently on different parts of her body to see if any other places hurt. She said “No”, or “That’s a little tender there.”
He felt Babe’s neck (she had trouble turning it to look behind her when she drove), and thumped and listened to her chest. He asked her if her chest had been hurting and whether she had shortness of breath, or trouble going up flights of stairs.
Dr. R. told Babe that she was in a lot of pain: That she had “fibromyalgia” and “pleurisy” and “pericarditis” (aches when poked, inflamed lungs, and an inflamed sac around the heart).
Babe has often been told she has a high pain tolerance.
The doctor spent the most time with her hands. He looked at her fingernails and the tiny blisters under the skin of her fingertips. He felt her knuckles, and looked at how her fingers bent. (Babe’s right pinkie looks a bit like the diagram below, and her ring finger was just starting to bend, too.)
Dr. R. asked Babe if she got tired around 2:00 p.m. (How did he know the EXACT TIME!?) She said yes.
He asked her if her hair had been falling out. She said it hadn’t, even though you could see two small bare spots over her right ear. (She wouldn’t admit to any man that she was going bald.)
He asked her if she bruised easily. She showed him her piebald legs.
Surprisingly, all of this–the (clothed) physical exam and the questions–happened quickly. After a total of only about 15 minutes in his office, Dr. R. told Babe that he suspected she had “systemic lupus erythmatosus”–also called “S.L.E.” or “lupus”, for short.
This was 1986. Babe had never heard of lupus, and neither had anyone else she knew.
Except, it later turned out, a childhood friend of her sister, who had lupus. And Babe’s own mom, who’d kept her diagnosis to herself, while Babe had been going through all the fun she’d had. Good one, Mom!
Lupus is named after the Latin word for “wolf”,
because it turns you into a monster.
(Okay, that’s not what the medical texts say,
but it makes more sense than their explanation.)
The doctor prescribed an anti-inflammatory, Naproxen (500 mg./2x) to reduce the irritation from all the body battles, and a sort-of immune activity interruptor, Plaquenil (200 mg/2x), to help bring peace to the body battle world. He also told Babe to get lots of rest.
He ordered labwork which later showed that Babe’s “ANA” and “anti-DNA antibody” tests were positive. She had antibodies to her own DNA? THAT was very nasty to learn.
Many autocidal conditions can cause a positive ANA test. Lupus is only one of them. A positive anti-DNA antibody test is more strongly indicative of lupus.
But you can have lupus symptoms and never show a positive result on any autocidal blood test. What does that mean? It means you have lupus, and diagnostic tests aren’t yet sensitive to your flavor of lupus.
How can you even live with antibodies to your own DNA?
When to Ignore Your Doctor
Where Babe ignores her new doctor’s advice.
Babe was dumbfounded when, at her first visit, Dr. R. very firmly directed her NOT to read up on her disease. He said that it would only worry her unnecessarily.
Of course, Babe ignored this patronizing nonsense, and went to Private University’s Medical Library the very next day to try to gain some familiarity with lupus.
Do you think Babe’s irritation was justified?
Quick Research Synopsis
Where Babe learns a little about lupus.
In one afternoon at the library, this is what Babe learned:
• That lupus rarely kills, but can make you tired and hurt a lot and feel like doo-doo a lot of the time.
• That it may hit women more often, but may hit men more seriously.
• That many doctors today think of lupus as a disease that develops around age 30, but that doctors way-back-when knew that often lupus patients shared childhood characteristics:
– emaciation-like thinness
– easy bruising
– extreme clumsiness.
• That since the widespread use of steroids to treat lupus, some doctors have confused side effects of the drugs with symptoms of the disease (leading to the sadly ironic: “Uh-oh, her symptoms are getting worse—better up the dosage!”)
• That many doctors use a standard checklist to decide if a patient has lupus, but the list they use wasn’t intended for that.
Their misuse limits the scope of what they look for, and causes many missed diagnoses.
(The checklist was developed to choose patients for research studies. It was designed to include only those patients who displayed multiple of select symptoms. It was never intended for clinical use in deciding which patients do and do not have lupus.)
Old-Timey Docs Did It Better?
Some of the old-timey, pre-widely-used-steroid-era doctors claimed that they could often diagnose lupus instantly, the minute some of their female patients walked into their office, just by looking at…
…their hair! What gave it away, you ask?
The way the hair in the front center would not fall evenly–one strand jacked out unevenly. How about that?
My college ID card shows long hippie hair with one jacked-out strand like the second photo.
Women Are Not Mushrooms*, Lupus Docs!
Where Babe learns about the lupus “bible”.
What an education Babe had about doctors and their attitudes toward women with lupus.
Lupus causes damage by the body’s defenses attacking the body–any part of the body.
The original lupus “bible”, written by Edmund Dubois [you would think “doo-BWAH”, but he said it “doo-BOY”], is one honkin’ fat book–all those pages are needed in order to fit the host of ways each part of the body can be affected.
But when it comes to letting women know what to be aware of, Dr. Doo-BOY doo not need many words. He uses about seven of those hundreds of pages. Here is a one-line summary of what doctors should feel free to tell their female patients:
“Not much! We don’t want them to worry their pretty little heads off.”
The “justification” given for this is that the disease itself can cause psychological effects:
(1) through pain and discomfort;
(2) through stress; and
(3) through direct action (inflammation) of the brain;
and we don’t want to stress these poor little delicate ladies any further by letting the light of truth shine upon them, since stress aggravates the disease.
* “mushrooms”–Keep ’em in the dark, feed ’em sh#t.
Isn’t this how doctors used to treat patients with cancer?
Or, is this a sexism thing?
Better! Thank You, Helpful Docs and Researchers!
Where Babe starts to feel better.
Just two weeks after beginning on the Plaquenil and Naproxen, Babe was in heaven.
(No, that doesn’t mean the lupus killed her, Carlos. Think: WHO is writing this story? 🙄 ) It means she felt WAY better.
As the pain from the pleurisy and pericarditis continued to lessen over the next few weeks, Babe was amazed at the amount of pain she had been having and had gotten used to.
It was so wonderful to be almost pain-free! Bonus that she was no longer breathless climbing stairs, and she could hold onto the steering wheel.
Her life was back on track. <==(I SHOULD be ashamed of this link blatantly promoting an overlong totally-unrelated prior post of mine of which I happen to be fond)
Dr. R. comes across as a jerk. He was the complete opposite. He was personable and warm. I could tell he cared about me. However: It’s a d#mned good thing I ignored his advice, because I specifically asked him:
“Are there any dietary restrictions that go along with this?”
“No, you don’t need to worry about that.”
And at the library that day, I learned he was WRONG! It turns out that there WAS food that I should have been avoiding, and that, if eaten in massive amounts, can induce lupus symptoms in even non-lupus folk: Alfalfa sprouts! They contain an amino acid which can trigger lupus symptoms. Back then, this wasn’t widely known even “in the field”, but this layperson with access to a top medical library at a top medical institution learned it by doing her research–I was reading stuff from the 1940’s and 50’s, and stuff just released in whatever-the-month-it-was 1986.
As a (now) sunny southern Cal gal, guess what I’d been topping off my whole-grain turkey-and-‘cado sandwiches with? 😮