Lucy in the Sky with Diamonds

I just read that Lucy Vodden has died. She was 46. She was ill with lupus for many years, and succumbed to it's ravages.

Lucy was the inspiration for John Lennon's classic song, Lucy in the Sky with Diamonds. Read about that here.

I am 46. Gulp.

I have lupus. I don't even like to capitalize the name of it, because I don't want to give it the respect it thinks it wants. I also refuse to call it by its common, more proper name, SLE (systemic lupus erythematosus), for similar reasons. I prefer not to give it a voice at all. That said, there comes a sort of tipping-point when it's necessary to exercise the notion that "to define is to limit", and that's where I'm at right now. But I won't give it more than I have to, just to get the upper hand.

I've been struggling with the worst lupus "flare" I've dealt with in about fifteen years, since the first part of April of this year. Meh.

Catch up here for what I've been through in the past - which, by the way, is totally common to anyone with lupus. 

Lately, it's like a hellish game of whack-a-mole. For myself, I can out-stand any pain you think you've endured. There are lots of things I just can't do, right now.  Physical endurance has to overcome pain, and, well, there's limits to that.  That doesn't mean I won't get back to it, when it stops.  And it will stop...eventually.  Eventually could come tomorrow.  I thought it arrived last Saturday, but alas...oh never mind. 

Struggling to wrangle it under control is like keeping a beach ball submerged in a pool.  It's really exhausting.

My grandmother had lupus and she also lived into her 80's.  For Gram, I will endure, and sometimes wish others would have more appreciation for those who've come before us - those who've lived long, and those who haven't. Not all of us will endure to see old age. Lucy didn't, and for that I'm sad.

Lucy had Britain's National Health Service. At least one worry she didn't have: If there were complications, which I have experienced in the past, she had the ability to be taken care of. 

I don't. And that should make us all sad.

Or, mad.  As hell.

I and others work so hard to fight to be well, and there are scores of people who simply fight to put off health care for us and others.  Since we make such efforts to survive lupus (and every other "chronic disease"), why in hell can't our legislators suck it up and get us some damned health care?  I'm not sick because of a lack of health care, but I have no where to turn if I experience complications. 

Lucy in the Sky with Diamonds will live forever.  The pain won't.  And neither will the legislators who can't seem to do the right thing.  Or those supporting them.

Rest in Peace Lucy.  You look beautiful in the Sky with Diamonds.