What Is Lupus?

Have you ever heard a straight answer about this?

The most they'll say is "It's really hard to diagnose," but what is the "it" that they're trying to diagnose?

Here's my guess, triangulating from several medical sources.  I think lupus (systemic lupus erythematosus) really means "autoimmune disorder, not otherwise specified."  If you have an autoimmune disorder that is attacking your thyroid, they call it Graves or Hashimoto's.  If you have an autoimmune disorder that is attacking the exocrine glands of your eyes and mouth, they call it Sjogren's.  And so on.

But if it's more widely systemic, they call it lupus.

Weirdly, if it's attacking the kidneys, or the skin in the form of a rash, it's also called lupus.  I suspect this is for crazy historic reasons.  So you get doctors making weird statements like "Many autoimmune disorders can be mistaken for lupus, making it difficult to diagnose."  If it's attacking your kidneys, it's "real" lupus.  If it's attacking your thyroid it's not, and must be distinguished from "real" lupus.

Dudes, quit arguing over the words.  The patient has an autoimmune problem.  The only useful question then is which bodily systems are under attack.

What's useful here for me, though, is a clearer understanding that what I've got is really "not otherwise specified."  I test positive for double-strand DNA antibodies.  My muscles and joints hurt.  I'm tired all the time.  And that (knock on wood) is all.  That's what makes my case lupus.

Reading About Lupus

I can't believe it took me two years to get around to reading up on lupus.  I'm a person who reads up on everything.  I guess I've been in denial, which is not something I believe in except that I've obviously been doing it.  I suppose parenting my child through her first three years hasn't left me with much time to think anything, except "Crap, I'm not getting my job done," but what parent doesn't think that?

Today at the library, almost on a lark, I checked out a bunch of books on lupus, along with books about genealogy, art forgery, and other random topics.  I've started reading the first one, and it's finally dawning on me: this is some serious shit I'm in. 

The pain and fatigue are not going to go away.  More serious treatments than what I'm on would leave me immuno-compromised.  The lupus could attack my brain.  And they wouldn't know it, because until you start having seizures or go psychotic, they don't have a way to diagnose it. 

And maybe worst of all, everything about my job is making my lupus worse.  The only way to do my job is to get the lupus in remission, and the only way to get the lupus in remission is to stop doing my job.

Exercise Equipment

I've given in and admitted that I need to exercise indoors, under climate controlled conditions.  Also crucial is that I not have to travel to get my exercise.

(Go to all the trouble to get to the gym?  I'm exhausted by the time I get there.  I can't believe how many people who hear about my health problems say "You should swim!"  Are you kidding me?  Travel to a pool, navigate through the locker room maze, change clothes, get to the pool, get cold, exercise, get out, strip off wet bathing suit, deal with wet hair, get dressed, package up wet stuff, travel back to home or work.  What's wrong with this list?  (Having said this, I know someone with lupus who swears by water aerobics, so it's all individual.))

So I ponied up the $$$ for a second piece of indoor exericise equiment.  My recumbent bike has been joined by a treadmill, which is such a massive space-hog it makes the bike look positively petite.

What made this decision so hard is that I have a deeply frugal soul.  Why pay for gym fees, or home equipment, when I can put on my running shoes and step out the door?  Lovely outdoor space is literally right outside my door.  I've spent much of my life with this have-fun-roughing-it-and-saving-money philosophy.  Hard to give that up.

But I eventually realized that the result was . . . not exercising.  I'll exercise today, oh wait it's too cold out and cold makes my bones ache.  I'll exercise today, oh wait the fog burned off and now it's hot and I get sun rash.

The indoor bike helped, but only gave me about half the exercise opportunity I need.  I need to rotate my exercises, otherwise I get joint problems.  Also, I get bored.

So hooray for my new treadmill, and my new commitment to spending beautiful sunny days indoors with the lights on and the electric exercise equipment running.  Whatever works.