As Em's Lupus got worse and worse, they kept playing with her cortisone dosage. Sometimes, they'd give her prenisone, sometimes prednisilone, which really didn't matter, because prednisone is artificial cortisone and prednisilone is simply a different chemical form which has exactly the same effect.

Cortisone is a hormone, one of the chemicals that control your body. They're all made by your body from cholesterol, an essential nutrient. It's a fatty chemical, which is why skinny women aren't sexy. One of the genius elements of the hormone system is that The Manufacturer can locate a hormone factory anywhere in the body, and it works the same, because it releases the chemicals into the blood stream, and blood goes everywhere. Well, almost everywhere. There's this thing called the blood/brain barrier, and I'm not exactly sure how it works, because the blood obviously needs to get to the brain.

Insulin is Another Hormone

Insulin is another hormone. It functions primarily to allow the sugar in the blood stream to be utilized by the body's cells. In ordinary - type 2 - diabetes, the insulin doesn't work too well, and blood sugar rises. Doctors treat Type 2 as if the problem was that the blood sugar levels were to high, and that's not entirely wrong, but the primary problem is that the cellular energy levels are too low. The body is starving to death. This is especially noticed in the brain. The brain is the largest consumer of energy in the body, and when your brain is short of energy, you get stupid. When it gets a little too short of energy, you suffer from depression. People think of depression as being a disease of sadness, but it's more a disease of confusion, because your brain isn't working right. You don't just lose cognitive function, but you lose memory as well, if I remember correctly. If I remember correctly. Take note of that phrase. Take careful note.

Angie, Angie, When will those clouds all disappear?
Angie, Angie, Where will it lead us from here?
With no loving in our souls, And no money in our coats, You can't say we're satisfied

But Angie, Angie, You can't say we never tried.

If you dump extra sugar into the bloodstream, it works sorta like dumping more and more drain opener into a clogged drain. That is to say, it works piss poor, but it does something. If you have a camera on the moon, and it won't take a picture, you hit it on the side with a hammer, and sometimes it works better - remember?

A Connective Disorder

If you read articles about lupus, you'll find it described as a disease of the connective tissue. Blood is a connective tissue, in that it connects our bodies together through the chemical signals sent by hormones but it's not cardiologists that treat lupus, it's arthritis specialists. God, that's stupid. But there are no such things as lupusologists. Lupus is an auto-immune disease, and so is arthritis. If I had a nickel for every time I heard Em tell someone that Lupus is like your body being allergic to itself, which is a really stupid explanation, but the fact is, I did have a nickel for all those times, and a whole stack of nickels ain't worth a plugged nickel. But it's also true that as she took cortisone, her skin got paper-thin and her bones as well.

Your body manufactures cortisone - something like 5 mg or 10 mg daily. Decades ago, they started producing cards with prednisone on it, 28 5 mg pills, so you'd keep track of what you were taking. The idea was that you'd take 35 mg the first day, 30 mg the second. 25 mg the third, and so on. Over the course of a week, you'd take one less pill each day, wsorking your way down from 7 pills to none. Cortisone is produced by the adrenal glands, and when you take artificial cortisone, prednisone, it causes adrenal suppression. If you shut down the adrenal glands, and they don't start up again, you die, because you need that 5-10 mg of of cortisone daily, to deal with daily stresses. Em took doses of 60 to 80 mg for the better part of two decades, shredding her body in the process.

Later on, they decided "pulse therapy" was a smarter way to go. Instead of programmatic pills, they'd just give you a single elephant shot of prednisone, on the theory that the jolt would do you good without shutting down your adrenals.

What Cortisone Does

Maybe I should mention what prednisone actually does. What it does for lupus patients is that is an anti-inflammatory: it suppresses the immune system. There are two types of lupus, the most common being Systemic Lupus Erythematosis. I'm not sure, but I think that means that means "disease of the red wolf." People with SLE get a "butterfly mask" of red around their cheeks. That's not the only symptom of lupus. Blondie tells me I get the butterfly mask when I'm stressed out, but there are about a dozen tests they give you, and if you come up positive on about eight of them, and you don't have a good explanation for that, they give you a diagnosis of lupus. You'd be surprised how many diseases there are for which one of the diagnostic criteria is "you don't have a good alternative explanation."

One of the other tests for lupus is a false positive on the Wasserman test, more properly known as the VDRL. That's the test they give you before you get a marriage license. Em couldn't pass that test, but they let her marry anyhow, with a note from her doctor. When we would have animated arguments and I would be losing, I would concede the battle by telling her that she didn't really have lupus, but that she was a syphillitic whore instead. I suppose some women would have taken great offense at that, but it was a running joke with us.

About 90% of the people who get lupus are women in the last trimester of pregnancy, and that's when she was finally diagnosed. They had tested and tested and tested her before, because we knew there was something wrong, but it wasn't until 2 weeks before Jasper was born that the symptoms became so unmistakable. The other 10% of the people who get lupus have taken a lupogenic drug. I'm not sure what they have in common. Tetracycline is one of those drugs; I don't know any of the others, off hand, but you could google for "lupogenic" and find others.

Nine Out Of Ten

It's also noteworthy that most of the traditional cases of lupus occur to nonwhite women. HIV and AIDS is also almost ten times as common.

One of the running jokes in "House, M.D." is that someone suggests lupus for every patient, and it's immediately short down. Because lupus is a systemic inflammatory disease, it can imitate virtually everything else. In one of the episodes, House is working without a team, and he hires a janitor to bounce ideas off of. Sooner or later, the janitor asks if it could be lupus. House shoots him a really strange look. Nobody's ever heard of lupus. The patients are women who are having children, not anyone who is important or a celebrity. The most famous person to ever get lupus was Ted Turner's sister. The white janitor explains that his grandmother had lupus. Obviously, she was one of the 10% who took a lupogenic drug.

Another one of our "in" jokes is that I am, in fact, non-white. Blondie has a hard time believing it, since I am about the pastiest-white person she knows, but I am an American Indian because my mother was, because her mother was because her mother was, and so forth and so on. I am also black because I'm more than 1/64 black, and what's more, I can track my lineage to black people within the 1/64 percentage three different ways. I simply say that I'm the highest of high-yellows - and when I really want to get her confused and angry, I call Blondie a nigger-lover. She's not sure whether it's OK for me to refer to myself as a nigger, as white as I am.

The Black Plague

In the last couple of years, they've discovered that the reason why AIDS is so much more common among non-whites is that the way it kills is virtually identical to the way the Black Plague killed its victims in Europe. If you derive from Europeans, especially the Northern European populations that were hardest hit by the Black Plague, you probably have a genetic predisposition to be immune to AIDS. I haven't heard of anyone doing a study to see if people with SLE were less likely to acquire the HIV virus, but it sounds like a promising avenue of study for a medical scientist.

We moved to a small town after Em had lupus, and one afternoon when I was seeing the family physician, I expressed some concerns about the prednisone. When he took over the practice, he said, he had one patient who was an older women. When prednisone was new, it was viewed as a miracle drug, and as an anti-inflammatory drug, it definitely qualifies, but they didn't understand it too well. One of the patients he "inherited" when he bought the practice was blind in both eyes, because his predecessor had given her too much prednisone. It builds up blood pressure, which they knew at the time, and it builds up intraocular pressure, which they didn't realize. One night, both of her eyes exploded.

The lady, he said, didn't bear a grudge. That seems hard to imagine. My agopraphobia comes about because they gave me excessive doses of a medication for a colonoscopy. They're supposed to give a lower dose, and wait 45 minutes. They have a higher dose, and waited five. I stopped breathing. That wasn't a big problem; they had an antagonistic drug available. The problem was, they had to keep giving me more and more of it, because they had to overcome the hypnotic. And that wasn't the problem, either, but there's a side effect of the antagonistic that causes central nervous system damage.

Troglodytism

I ordinarily don't mind being a cave dweller. I've never been a party person. On the other hand, I got out on Monday with Marie in the back of the van, and was able to run some errands. The day was beautiful, and everywhere I went, there were nice people, and it reminded me of what I so rarely experience these days. There's an osteopath from Doctor's North hospital in Columbus whose brake lines were luckily hundreds of miles too far away to tamper with.

But Angie, I still love you, baby
Everywhere I look I see your eyes
There ain't a woman that comes close to you
Come on baby dry your eyes
But Angie, Ain't it, Ain't it good to be alive?

Angie, Angie, You can't say we never tried

Em has been dead for more years than the years I knew her, but I still really miss her anyway.

Other Bloggers On Related Topics:
AIDS - allergies - autoimmune - black plague - blood-brain barrier - brain - Columbus, Ohio - confusion - connective tissue - cortisone - depression - Doctor's North Hospital - HIV - hormone - insulin - lupogenic drug - prednisilone - prednisone - presnisol' - sex - syphillis - VDRL