“I dreamed a dream in time gone by……


….when hope was high and life worth living…..”

Les Miserables.

Love that production.

Relevant? Somewhat. I’m at a point now after a whirlwind of a week, typing with fingers so inflamed, so sore, that it hurts to hold a toothbrush.

It wasn’t always like this. Was it? Indeed, the results of blood work past indicate that it was. Likely 8-10 years of this. So, why is it so bad NOW?

It’s not. Don’t be ridiculous. Yes, it’s progressive, but seriously….you’re talking to a woman who has a made-for-tv-movie kind of life that I live at a rate of 2.2 wtf’s per second….You do what you do because it has to be done.

Now, the veil has been lifted. I’m no longer confined within the boundaries of social acceptability.

“WTH are you trying to say?”

What I’m saying is this:

I have suffered through this pain for almost a decade but sequestered it underneath the possibility of being perceived as ‘crazy’ as all things unknown are most certainly ‘all in my head’ because you cannot see it and, therefore, cannot quantify it under your own terms of acceptability thus leading you to conclude that it doesn’t exist.”

Things that make you go “hmmmmmm”……

This week. Crazy! CHAOS! AWESOMENESS!!

May 10th was World Lupus Day….Twitter was aflutter with tweets about facts and emotions from all of those living with, or caring for someone living with, lupus. :o) I wore purple. My FH wore purple….even a handful of awesome friends wore purple!! I bombarded my Facebook community with factoids all day. If anyone hears a word even closely resembling “lupus” and does NOT see my face, well….I’ve more work to do ;o)

May 12th was World Fibromyalgia Day….Twitter was aflutter once again with tweets about facts and emotions….yadda yadda….and NO, I did NOT bombard my Facebook community with factoids all day….didn’t want to have them skip out and de-friend me…because that would be just AWWWWWWWFUL (y’know, having people you thought supported you toss you to the curb because you don’t fit into their expectations)

I didn’t want them to be bothered.

I didn’t want them to be bothered with something that I live with every day, and have done so for approximately a decade.

I didn’t want them to think ill-will of my attempts to educate.

WHOA. That either speaks ill of me, speaks ill of how I perceive my friends, or speaks ill of how my friends perceive ME.

Wonder if they’d feel the same way if I had, oh, cancer….leukemia…multiple sclerosis…cerebral palsy….

Things that make you go “hmmmmmmmmmmm”……

May 14th was the Ottawa Walk for Lupus!! It rained. It smelled like worms. And it was AWESOME :o) I don’t care how awful I feel today, because there are people on my forums, in my groups, on my feeds….that simply cannot even get out of bed. Whereas I take 6 pills in the morning, they take 10. I had awesome people around me, and rooting for me behind the scenes.

THIS, my friends, is “HOPE”….people of different paths banding together for a similar cause. One day there will exist a time where we will no longer need to wonder what it felt like to feel “normal” and we will finally be able to live without pain, without worry, without feeling isolated, without feeling crazy…..
…..without arguing with doctors….without trying to find someone to believe us……without having eleventy-billion appointments…..
…..without having to explain to friends yet another no-show….without having The Spoon Theory memorized to the point that you can recite it in two official languages to the poor busboy who places your utensils on the table……
……without having to struggle through the pain just to wipe your ass to find reasons why life IS, in fact, still worth living.

There WILL be this day….because the pain and deterioration cannot touch the ability to HOPE.

So, to my dearest Lupus….I raise both middle fingers high in the air as a final salute to your presence and clearly indicate my transition from “holy buggernackles, I have WHAT?” to “Bring it.”

Because when my body won’t commit to kicking your ass, my mind most certainly will…*evil grin*….

2 responses to ““I dreamed a dream in time gone by……

  1. 5andproudofthem

    LOVE IT!!!!!!!!!!!!!

  2. You go girl you know we are rooting for you!

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