Giving the Beast a face

Monthly Medications: $140 of copays.
Monthly Office Visits: $40 of copays.
Knowing You Aren't Crazy: Priceless.

I got "lucky" (yeah, right) when I was down in Houston and out with klash.

My arm decided to do one of the Wonder Spasms, the full debilitating FMS blowout. My hand, trembling and quaking, turned purple and went ice cold because the spasm took away full control of my arm.

And Klash and her daughter got to see it happen from the beginning to end.

Times like those when you not only KNOW you aren't crazy, but so does everyone around you, are priceless. And all too rare.

Fibro is so often a faceless demon. You can't see it, smell it, touch it or taste it, but it controls you nonetheless. That lack of solidity makes it a true demon, one of which has managed to convince all too many that it doesn't exist at all.

Proof ... is priceless.

My fibro wasn't too bad until I had to endure multiple surgeries, childbirth, pneumonia, and 5 confirmed cases of strep all within a 4 year span.

I still have nerve damage where my arm was rebuilt, and since it's after the "regeneration" point, I know it's permanent, along with the ugly thick purple scar.

I had my tonsils removed for the second time after enduring 9 very long months of being constantly ill. I lived on liquids, period. I ended up in the ER repeatedly to get shots that would bring the swelling in my throat down so I could even breathe. I developed a violent and deadly allergy to penicillin after 30 years of being able to take it, as well as new allergies to codeine, and I completed the allergies to all forms of sulfa meds.

I've spent too many hours weeping hysterically because I Just Don't Know ... and half the time am too fogged to know what it is that I can't put together. I've had to learn to live with being "Stoopid" now, to live with hearing my husband say "Man, you should have seen her ..."

This is not me. I am not this broken shell. I am not this lost mind.

But if I am not ... who am I?

I am a mother. I have two children who I sometimes cannot even name properly, going through the "Ka, uh, Cha, uh, oh, WHOEVER you are!" stumble to call one onto the rug. I cry inside when I have to tell the eldest that she has to ask her father for help with homework because I simply can't remember HOW to do addition or subtraction at the moment.

I cannot pick up my youngest and cuddle her in my arms because she's too young to understand about avoiding trigger points, and she cries when she realizes she's hurt me again. Too many days I'm unable to hug my children at all, because my skin revolts and even my clothing is painful to wear.

I am a wife who cannot remember the last time we were able to have sex. The agony of after and during can't make up for what small pleasure I could receive. It's no fun for my husband to watch me burst into tears during it because it hurts. He's afraid to touch me at all, never knowing when it will hurt. And then of course it hurts more, because I WANT to be touched ... but even I don't know when it will and when it won't be painful.

I am a writer that has forgotten how to finish a sentence. I begin ... and the little surge that is supposed to connect one thought with another short-circuits and I'm left to stare blankly, wondering what it was that I had set out to accomplish. The story of my life, always to remain incomplete.

I am a woman, and I am so much less so. I cannot love, I cannot feel, I cannot nurture on call, but instead my life is run for me by a beast with no face and an ill-fitting name -- Fibromyalgia.

Fibromyalgia. It, too, is like me, a thing that cannot be easily defined. It is all, and it is none. It is husbands, wives, children, parents, friends. It is sly, subtle, forward. It is control, and it is the loss of the same.

It will never ever go away.

The hardest thing for us to do, when we're in so much pain, when it hurts to even exist, is to remember that WE ARE NOT ALONE.

Sometimes, that makes all the difference in the world.