Tuesday, January 31, 2012

Lupus, It's back! =(


I decided several years ago to be more 'real' about having Lupus and to help others get a glimpse into the life of someone with Lupus. Hence, from time to time I blog about it.  For many years I kept it all to myself and although people knew I had it, I seldom talked about it.  I'm still like that in many ways, but I'm trying to be more open about it.
My fear about opening up to others is over-sharing.  It's a fine line, to me at least, to educate people about the disease and it's limitations without coming across as a 'whiner' or a 'Debbie Downer.'  I would rather you call me a 'flake' because I always cancel appointments when I don't feel well.  I would rather you call me an 'exaggerator' because I don't look sick and you can't quite put yourself in my shoes, but most of all I never want to be labeled a whiner.
Last year was hellacious as far as Lupus goes, but I was finally feeling as close to normal as I can ever expect.  I was feeling pretty good actually.  The horrid yet wonderful treatments worked, my indicator tests for Lupus activity came in negative, and I was in remission.....not a true remission, but a drug-induced remission, free of symptoms for the most part at least.  But with Lupus there is no true remission, no cure, and sometimes no hope.  Today has been one of those days for me.
Yes, it's back.  You can never forget about it.  You can never turn your back to it or move on because it's always there lurking in the shadows.  It comes as a thief in the night, to borrow an overused expression.  It's frustrating, unpredictable, extremely painful, debilitating, and it steals my best intentions and shatters my current plans.  I'm forced once again to be more gentle with myself, to be more flexible, to prioritize, and to remember what and who really needs my time, effort, and energy. Everything and everyone else must disappear....for a while at least.  I can still do most of what I want to do, but it just takes longer than I planned.
But I am a Lupus fighter and I know that tomorrow is a new day. I desperately long for a cure!!! I know that I can make through yet another 'flare' though because I've done it before (nearly 15 years now), but please, please, please let it be a quick 'flare' this time!!!


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2 comments:

Brownie Bites said...

You are one amazing woman, Jen and I just love love love you so much. Sounds sappy, but who cares. I'm so glad to know you. You inspire me!

Jenn said...

Karin, you know I feel exactly the same way about you!! Ditto all around. Thanks for the support. I really appreciate you!