Good things never last forever. And bad things come and go too. I’ve had a steady uneventful four months of relatively good health in the lupus department. So it shouldn’t come as a shock to me when I see the obvious signs of a lupus flare starting to circle back again. First it was about the kidney problem. The nephrologist said I had lost some kidney function, but for now we will simply monitor the situation. That was good news. Now, I’m accepting the fact that the vascular rash that is the primary nemesis of my particular brand of lupus has returned. The familiar cycle of hives on my face is, well, back on my face. The small vessel vasculitis on my legs is slowly reappearing. My arms, torso, back and thighs are affected again. The stinging feeling on my arms and back has returned.
I have no idea why. It just is what it is. And the circle game begins again.
I’m diligently taking all my medications. I get infusions at the hospital every three weeks. I have a very long and expensive trail of paperwork that my insurance carrier sorts through on a monthly basis. I’m an insurance underwriter’s nightmare.
So this is when I start trying really, really hard to be Little Miss Pragmatic. This disease comes and goes in cycles. It will probably get worse before it gets better. And I have faith that the vasculitis WILL improve.
One of the most frustrating things about having lupus is accepting the cycles of feeling well and feeling ill. I’ve had this diagnosis since 1992 and I still manage to get all pissy when I develop flares. I get all snug and cozy when I get lucky enough to enjoy a pain-free, rash-free stretch of time. Heck, I even start to feel …. dare I say it …. relatively normal! And then I get blindsided when my autoimmune system starts to go haywire. Again. And again.
For now, I will start back up chanting my “coping with lupus mantra” …..
I will stay out of the sun.
I will wear long sleeves.
I will not get overheated.
I will try to avoid stress. (However, if anybody reading this knows a sure-fire way HOW to do this, please get in touch.)
I will tell myself that even though I may not look the way I want to, I’m still the same person on the inside.
I will rely on the strength of my faith, family and friends.
I will continue to pray for a cure.
I will tell myself that I am not my disease.
I will remember that living with lupus is a circle game.