Cranky Fibro Girl

Harnessing the healing power of snark

I Call Uncle

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I have fibromyalgia.

AND, I am a massively creative person.

I have ideas and possibilities and desires to try new things pretty much oozing out of all my pores at all times. I walk around in a shower of ideas for creative projects generated by the streams of creative energy that are constantly flowing through me.

In some ways, this is SO cool. I have almost no trouble entertaining myself, because I have an incredibly rich, complex, and well-developed inner world. And truth be told, I’d rather spend my time there than anywhere else.

But in other ways, this is So. Damn. Hard.

And the Particular Hard that I’m experiencing right now is the fact that I can no longer ignore the existence of my body and its current physical reality of living with chronic pain and chronic fatigue. And I can no longer deny the fact that my body, fatigued, battered, and aching, plays a role in bringing all of my various creations out into the world.

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It Was The End Of The World As I Knew It, But I Did NOT Feel Fine

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(As a two-year resident of Athens while completing my graduate degree, I just couldn’t help it- even though I was never blessed with my own personal “Michael Stipe Sighting”, like  other people I knew.)

So, anyway-onwards to the point of this post.

October used to be Way Cool Awesome for me, because it is the month of my birth. And the month when fall was most definitely here. And cool, fall Youth Group activities. And new beginnings.

But unfortunately, it now has a lot of awful anniversaries for me. So the bulk of October, and the first couple of weeks in November are really hard for me to get through.

Because it was at this time three years ago that I got the horribly wretched and awful illness that eventually tipped me over the edge into fibromyalgia. I haven’t been able to write about it or really talk about it until now. But I think I’m ready now to tell you my story. I guess we’ll see.

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I have always had a weird relationship with my body. I think I always resented and denied the fact that I even had to have a body, and couldn’t actually survive as a disembodied brain just floating through the world and collecting experiences-even though that is exactly how I navigated my way through this world.

There were some understandable reasons for this. For example, I got sick ALL THE TIME as I was growing up, pretty much from birth all the way through my life until October of 2007. I was in pain, a lot. I was ill, a lot. I didn’t feel good, A LOT. So it was actually pretty understandable for me to flee my body and spend all my time up in my mind. I have always had a very vivid and entertaining inner world, so it was really no problem for me to entertain myself in there.

And I never said anything about it, because I though that’s the way everyone was. As a matter of fact, when I’d first seen my rheumatologist and we were waiting for the test results, my husband did not understand why I was so excited that I might actually have A Real Thing. So I told him that every single day, as far back as I could remember, there was always something in my body that hurt, or that didn’t feel well. But for one thing, the doctors rarely ever found anything wrong for me, so they really couldn’t help me. And for another, I thought that’s what it meant to be a grownup. I thought everyone felt bad every day, but that you just sucked it up and never said anything, because that’s just what happened when you were a grownup.

And then my husband looked at me, horrified, as though I had just sprouted four heads.

And I said, “You mean, you don’t feel that way?”

And he said, “NO, I DON’T FEEL THAT WAY!” (I think his head might have exploded a little bit at this point, because what I’d just said was so far outside his experience, that he couldn’t even begin to comprehend it.

And I said, “Well I do.”

And then he looked at me with compassion and concern, because he’d never known that before. Because I never told him. Because I didn’t think there was anything that anyone could do to help me feel better.

But that actually comes much later in the story.

The point where this story starts is the part where I somehow contracted the most god-awful, potentially fatal (although, THANK GOD I didn’t know this at the time) illness known as C DIFF.

And apparently, that is all I’m able to write about this for right now.

To be continued…

Dear Life: Why Do You Hate Me?

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My husband: “So, how are you feeling?’

Me: “Well, I have cramps, fibro pain, AND a migraine. I really want to go find Life and punch it in the nut sack.”

My husband: “Hey, wait a minute. You’re assuming that Life is a guy.”

Me: “OK then, I want to go find Life and stab it in the face.”

My husband: “There ya go.”

Reassurance

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So yesterday I went to see my fibromyalgia doctor because ever since my surgery I have been having really bad pain. Because-of course-physical trauma is one of the things that can cause fibromyalgia in the first place. It’s just such a lovely little circle I have going on here. (And do not even get me started on the migraines.)

I was trying to describe everything that was going on and, since I am a writer (and, ahem, something of a Drama Queen and Rampant Abuser of Creative License), there was much wild gesturing and saying of things like, “And then after being in pain for so many days I just go into this downward spiral and think things like, ‘Am I going to die?’, or, ‘Is this all there is to my life-just managing pain?’ ”

So he came over and started doing his physical examination and, wanting to be helpful said,

“Well, you will die. But not from this.”

And somehow, I was oddly reassured.

Why Pain-Free Days Aren’t Really All That “Free”

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I have been having a few pain-free days lately (although I’m terrified to even write this, lest I jinx it somehow. It’s hard not to be superstitious when you’re living with something as unpredictable as a chronic illness). I’m very grateful, and very appreciative for these days, but I’ve stopped announcing them to the world at large, because people who aren’t sick just don’t get the fact that starting to feel good after m-a-n-y days of being in pain is just as difficult and disorienting as it is when you start to feel bad after a handful of days of feeling good. And when I try to explain to anyone else why I’m kind of weirded out by a feeling-good-day and don’t know what to do with it, as much as I know they want to help, I cannot “just enjoy it.”

The best example I can use to explain what this is like is the time when I was a senior in high school and Hurricane Hugo came barreling through Charlotte, where we lived at the time.

There was the period of hurricane, which was scary and destructive.

And then the hurricane passed.

But then there was the aftermath.

Just like when you make it through yet another pain cycle.

And since the hurricane metaphor really works for me, I’m gonna keep on going with it to try and explain how living with a chronic illness is similar to living through some sort of natural disaster.

1. First, you must survive the hurricane/pain flare-up.

“When you’re at the end of the road
And you lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul

Your faith walks on broken glass
And the hangover doesn’t pass
Nothing’s ever built to last
You’re in ruins”

“21 Guns”, Green Day

2. You must figure out how to transition out of existing in crisis/survival mode.

“Find me in the river
Find me there
Find me on my knees with my soul laid bare
Even though you’re gone and I’m cracked and dry
Find me in the river, I’m waiting here

We didn’t count on suffering
We didn’t count on pain
But if the blessing’s in the valley
Then in the river I will wait”

“Find Me In The River”, Delirious

3. You  must make sure that the hurricane has truly passed, and that you are not just temporarily in the eye of the storm, with more devastation on its way.

“I know what you’re thinkin’
We were goin’ down
I can feel the sinkin’
But then I came around

And everyone I’ve loved before
Flashed before my eyes
And nothin’ mattered anymore
I looked into the sky

Well I wanted something better man
I wished for something new
And I wanted something beautiful
And wish for something true
Been lookin’ for a reason man
Something to lose”

“Wheels,” Foo Fighters

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Stanford’s Robert Sapolsky On Depression

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Stanford Professor Robert Sapolsky, posits that depression is the most damaging disease that you can experience. Right now it is the number four cause of disability in the US and it is becoming more common. Sapolsky states that depression is as real of a biological disease as is diabetes.

Hm-maybe I can start letting myself off the hook.

From Cranky Fibro Girl With Love

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So if you’ve spent any time looking around here at Cranky Fibro Girl, you  may have noticed a page titled, “How Not To Be A Dumbass”. This page is the collection of all the wisdom and experience I have gained as a patient over the past few years, and is basically an open letter to doctors, letting them know how they can be better doctors for those of us suffering from chronic pain and chronic illness. Because, frankly, some people need A Lot Of Help in this particular area.

And then the other day someone told me that she’d actually printed that whole page out so that she could begin the revolution take in and show it to her doctor.

So that got me to thinking that if there is anyone else out there who wants to respond to our call to arms share that list with their doctor, then maybe we should make that a little bit easier for them. So we did.

So there is now a “printer friendlly” version of the Don’t Be A Dumbass list available to download. Just click the link at the top, righthand corner of the “How Not To Be A Dumbass” page and it will take you directly to the PDF.

Or you can just click here.

Viva la revolucion!!