What the heck is lupus?

Six months ago when I saw an internist about my thyroid problem, he mentioned that my blood work showed some antibodies in my blood that could indicate lupus, but told me not to Google it because just about everyone could convince themselves that they have lupus!  He said we'd treat my thyroid and then see how I felt, and what my blood work looked like. 

By November, now on synthetic thyroid hormone, my thyroid levels were A-ok, but I was still feeling almost the same:  needing to go to bed very early and always feeling behind on sleep.  Even when I slept pretty well at night, I almost always felt tired.  The doctor started me on some medication for lupus (called Plaquenil) and said if it works, that would mean I definitely have lupus.

By my next appointment in December, I felt about the same, only less joint pain.  (Arthritis is a common symptom of lupus, and I've had arthritis since I was 12, although once I reached adulthood it didn't need treatment anymore.)  But the difference was so minute that I was guessing--hoping!--I didn't have lupus.  But at my appointment the doctor reported on some blood work I'd had done (low complement levels--I didn't know what that was either), and said that supports a diagnosis of lupus.  The good news was that I don't have the life-threatening blood-clotting disease that can go along with lupus.  Well, good.

When I got home I felt a little emotional about my diagnosis.  If my tiredness weren't due to lupus, I figured I could find out what the problem was, treat it, and get back to normal.  But the diagnosis forced me to acknowledge that I've got this baggage to carry for the rest of my life.  Once I got through the door, the kids were clamouring for my attention, as usual, and I couldn't sit and talk to Paul right away.  I couldn't wait to tell him, but I had to, at least for a few minutes.  But I got a great hug from him to tide me over until then.  It felt so good.  His hugs have been so soothing to me lately!

You may be wondering, what the heck is lupus?  I hadn't done serious research about it yet because I really didn't want to have the disease!  Here's some information from the American Autoimmune Related Disease Association's website:

Lupus is a chronic autoimmune disease in which the body immune system, instead of serving its normal protective function, forms antibodies that attack healthy tissues and organs. For many people, lupus may be a mild disease affecting only a few body organs; for others, it may cause serious and even life-threatening problems. There are several types of lupus.

It goes on. It often attacks the kidneys, but my kidneys are fine.  It often causes a rash, and I have no rash.  (Psoriasis doesn't count.)  My doctor says that for most people, the symptoms are like mine:  just tiredness and joint pain.  My joint pain is very manageable.  I'm working on the tiredness part.

Lately I've appreciated not being more physically limited than I am.  Our family went on an outing to ride the monorail last Saturday.  They'd never been on a real train and Emily requested this outing for her birthday.  We had a great time, and although I was a little tired and a little motion sick, I felt grateful to be well enough to go along on the outing and see my kids enjoy themselves.  I think I need to appreciate what I have and let go of the frustration I've experienced about not feeling as good as I once did.  That is a process that I expect will take some time.