the eye doctor ...

Another joy of being a lupus patient is that you have to go to an opthalmologist for regular eye check-ups, because there is a small chance that the plaquenil can mess up your retina.

OK, no biggie, an eye doctor appointment, right? Ummm, yeah biggie! I thought it would be a quick thing, maybe 1/2 hour max, in and out no problem. Well, I was there for two hours!

The field of vision test thingy (the one specifically to test the retina dealio) is a pain.in.the.butt! I had to stick my head in this small white light-box type thing with one eye closed, and for 7+ minutes stare at this little yellow dot...and if I saw any other red dots lighting up, I had to press this Jeopardy-type button...and then I had to do it for the other eye. OK, it might not sound that bad, but it was quite tortuous. This is in addition to the lovely drops the sting into my eyes, the prying open of the eyes etc. etc.

And I have to go through the same mess every 6 months! Wazzap with that? Ugh.

feeling better

It seems that the plaquenil is actually kicking in. I've been on plaquenil for about 5 months now, and am feeling pretty good. Most of the aches and pains are gone, though my pre-lupus pain in my lower back/hip area seems to have come back...so strange.

I'm still having skin issues - lesions on various parts of the body, rash on face, losing hair (hate that one...) - but at least none of these are painful.

I'm pretty much living life as if I don't have lupus. I am trying to simplify if possible, but I've decided that I might as well live my life how I want to while I can...seize the day and all that... :D

I've lost a bunch of weight. It's hard to tell exactly how much because before the lupus I was pregnant, then had the baby and was nursing...so I lost a lot of weight after the baby was born and it just sortof kept going. It really feels weird to be so skinny - around 110 lbs. I haven't been this small since high school. It's nice to be skinny, but think I'd rather be fatter with no lupus than skinny with lupus...