X's and O's!!! and How to Deal with Sick People

A really special friend, known as GottaLaff on Twitter, reminds me today that it's good to let people know how much they mean to you.

I logged on to Twitter this morning, and, better than fishing at a fishing hole teaming with great fish, GottaLaff popped up with a message right away to me:

I've been struggling with a lupus flare for months now, and I've not been on Twitter as much as I would have liked, and frankly, I miss some of my friends in Twitterville, like Laffy.

After a brief exchange, I told her that she gave me hope.  I didn't mean it as though, "all hope is lost" and "I'm so depressed", but just a simple point of wow!  Someone out there cares!  It's not like I'm this lonely waif with no hope, honestly!

Look at her post - look at the x's and o's - look at all those exclamation points!!!  How could I not feel better with all that?

Here's what it's about, plain and simple.  For all the stupid stuff I'm dealing with (lupus just cycles through, much like a really long rollercoaster with twists and turns, drops and climbs), there is but ONE thing that helps.  Just one thing.

Make me smile.

Mr. Blondetwit gets it, and doesn't really ask "How are you doing?".   My mother hovers, which is really difficult.

Which reminds me to tell you, for everyone asking "How are you doing?", the inquiry is appreciated, as it's honestly nice to know you care, but it's hard to tell the truth, because when your crappy, I don't like to give it the light of day by voicing it directly.  I've learned that it's better to say, "I hope you're feeling better!" I hate being disingenuous by saying, "I'm fine". when clearly I'm not.  I don't lie, so my point is don't take me there.  Lying is the same as giving it voice in the first place.  No one likes to hear someone's crappy - it brings down their day as well. 

When you're face to face with someone struggling with disease, whatever it may be, find something to compliment, even if it's only "It's good to see you smile!"  And you may want to start out by helping to make them smile in the first place.  When you're not face to face and can't see if they're smiling, just tell them you hope they're making progress.  It's that simple.  Wish us peace.  It's always in short supply.

Whatever you do, keep up the x's, o's and those blessed exclamation points!  They're awesome!!!!

XOXOXOXO!!!!!

See, you smiled!  You had to!

You're all very appreciated, by the way!!!!  (Especially GottaLaff!)

By the way, Mr. Blondetwit, may not ask how I'm doing, but he is the King of Cheap Laughs, and that's the finest, most valuable medicine in all the world.  I'm flush with that!

For the rest of you who aren't named here as being appreciated - you know who you are - YOU ARE APPRECIATED TOO! Really!  It would just get a little, well, you know - maudlin - if I started naming you all here.  Thanks!

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.

I Was There For You

Where are you for me now?

I was reading my local newspaper this morning, and as I read the letters to the editor, I let them get to me.

One writer indicated that reform just wasn't justified. Others have said that if people don't have insurance it's their fault. Apparently, if you don't have insurance you're lazy.

Nope. Not lazy. I have a chronic illness, called Systemic Lupus Erythematosus. Lupus for short. I did not get it because of poor choices in my life. I was told by two different physicians that I would not see my 35th birthday. I'm 46 today, and healthy. Very healthy. Because I take care of myself. You wouldn't know to look at me that I've suffered a massive heart attack, pneumonia more times than I can count, nephritis, massive skin sores, plurisy, on and on.

Over all the years I've known I've had this disease, what have I done?

I've helped you. I've helped you with your children. Provided for them when you couldn't, or wouldn't. Protected them - sometimes from you.

I've rescued the pets you abandoned, and sometimes the ones you abused. I've rehabilitated others so that you could have a lifelong friend - one who was totally devoted to you.

I've made sure that there were things in this community for your enjoyment. For your quality of life. And you really, really enjoyed them!

I've stood longer, argued longer, and held my breath longer, so that you could get what you needed.

Your business is here because I thought you should be able to have it. Your home is liveable because I got involved when others wouldn't.

I've stepped out and provided you opportunities you didn't have without me.

In disasters, I was there when others weren't. And I was likely sick at the time. But I was still there. And your home still stands because I was.

I've paid for your meal & I've paid for your groceries, when you couldn't.

I've made sure that the least among us had what they needed. And I've not done it nearly enough. Neither have you.

I've stood between you and "the man", when you were about to be deprived. And you weren't.

I've found myself in the most amazing situations, and I rarely tell anyone about any of it. Some who know me well, know of some of these things. Even my husband doesn't know about everything, but he knows I'll always do something that needs to be done.

I've never, ever asked you for anything. Sometimes, when you had the opportunity to thank me, or asked me what you could do for me in return, I told you, "pass it on". I hope you have. But it wasn't required. I gave to you because I love you.

But - somehow, my health care isn't justified.

It's called heartache, because it actually hurts your heart.