Where There’s a Will…

 

 

Late the other night, I was awake and in pain and perusing ye olde Facebook in an attempt to find entertainment and, perhaps, something that would miraculously lull me to bed. Instead, I stumbled across something that both angered and hurt me. Here’s how it all went down:

 

I noticed that someone had posted something on the fibromyalgia support page. She was asking if anyone was familiar with the side effects of certain medications often prescribed to FM. It just so happened that I had tried all three of the prescriptions she mentioned, and went ahead and shared what I knew about Cymbalta, Lyrica and Savella. And then I saw it.

 

Amidst the many comments and questions was a woman who said that medications don’t work for things like fibromyalgia, and that really, all that the original poster needed to do was “breathe deep and will the pain away.”

 

Normally, I would have just dismissed the ignorant comment. But I was feeling particularly defeated, and something about her statement really hit me in the gut.

 

Here’s the thing, guys. When people make statements akin to “all you have to do is set your mind to it…” it implies that a person’s symptoms are all in their head. Or that they’re exaggerating. Or that they can simply will away their pain. Which would be awesome. I mean, if I could take a deep breath and suddenly not be in agony every time I move, I’d be all over it.

 

But I can’t.

 

Telling someone with a chronic condition to stop taking their medication and just will themselves better is not only insensitive, it’s downright dangerous. I’ve had people tell me I just need to get out more, or that a good night’s sleep is all it would take to make me right as rain. I’ve had people tell me that everyone feels achy sometimes and to stop being so dramatic about it all.

 

And every one of those statements is another tiny chip at my well built-up armor.

 

So here’s the thing, everyone. Before you assume that someone’s condition is all in their head, or that they are faking the extent of their symptoms, simply take a quick peek online. A little research, a peek at an online forum, even a gander at some Tweets will probably be all it takes to give you a better idea of what it’s like to live with something you are unfamiliar with.

 

You’d be surprised at how much it means to someone when you take a few minutes to try and see what they’re going through…

At the Base of the Ceiba

Today’s post is a little different. It’s a work of flash fiction, created in response to the the challenge over at Chuck Wendig’s Terrible Minds blog. The idea was to take two randomly generated literary genres, smash them together, and create a story of about 1000 words from the mess that resulted. My two genres were Southern Gothic and Superhero — neither of which I’ve ever had much experience with. The “superhero” in my story isn’t traditional… so sue me. Hope you guys enjoy! Feedback is always welcome.

 

At the Base of the Ceiba

 

Kinah kept her eyes down as she skirted the outside of the big house, the hem of her faded blue dress kicking up small clouds of dust. The midday sun was particularly brutal for this late in the year, but she didn’t dare stop to wipe at the beads of sweat tickling the back of her neck. Someone would be missing her in the crowded kitchen, and it wouldn’t do to get Misses’ ire up again.

 

She found Ben kneeling on the hard packed dirt under the Kapok tree. Ceiba, they called it back home. At least that’s what she’d been told. Home to Kinah was the plantation where she’d been born. But Ben clung stubbornly to the stories of the place he’d last seen as a child – and his back and arms bore the scars of his willfulness. Above his head, two fat bumblebees traced lazy circles in the dappled shade.

 

“The ceiba is sacred to Chango.” Ben spoke without looking up.

 

Kinah sighed heavily as she stepped closer to him, her bare feet relishing the change in temperature as she approached the spot where he knelt. In front of him, a small candle burned at the base of the tree.

 

“I know. You’ve told me a million times.” Crouching low, she took a moment to rest her head against his broad shoulder.

 

“What are you doing out of the kitchen, Kinah? The overseer won’t much care that your hands are soft and your hair smells like cinnamon if he catches you out here.”

Despite his admonishment, Ben turned and wrapped his arms around her shoulders, pressing a kiss to her forehead as he held her tight. Had he not been so close, he wouldn’t have seen her wince. He was on his feet in a breath, pulling her up with him.

 

“Let me see.”

 

There was really no point in playing dumb. Carefully, she pulled the collar of her dress bodice down, revealing a fresh set of bruises around her neck and shoulders. Ben ran a calloused hand gingerly along the raised welts, his dark eyes clouding over with fury as he hissed a slow stream of air out from between clenched teeth.

 

There wasn’t a soul on the plantation that didn’t know better than to try to talk down an incensed Ben. But then again, Kinah’s head was easily as strong as her brother’s. Quietly, she slipped her hand into the tattered pocket on the front of her dress and pulled out the small red apple.

 

“I brought a gift for Chango,” she smiled and placed the stolen fruit on the ground by the lump of candle. The sun glinted off the apple, blurring her vision. Or maybe it was unshed tears in her eyes. Deep in her throat, a lump burned.

 

Kinah had long since given up any hopes that the gods of her homeland would somehow make her life any better. Resigned, she simply spent her days in the kitchen and her nights waiting for Mister to come for her. But she knew how much Ben’s faith meant to him. It was all he had. So she played along, and let him believe that she prayed as hard as he did.

 

“I better get back before –“

 

“Before someone notices your gone? I’m afraid it’s too late for that, girl.”

 

Spinning around, they came face to face with Tobi. Mister’s favorite overseer was crueler than anyone had a right to be; his fingers petting the frayed edges of the whip with a reverence usually reserved for lovers.

 

Everything seemed to spill forward in muddled slow motion. Tobi reaching for the handle on his whip, Ben pushing her aside and rushing forward towards the overseer.

 

Stumbling against the Kapok tree, Kinah felt the spine slice into her palm before scrambling back up towards her older brother.

 

At first she thought the rumbling and cracking was coming from Tobi’s whip. But even as he raised his hand again, the sky darkened to the color of spilled ink, a hot wind picking up dust and pebbles until Kinah had no choice but to shield her face and turn her head back towards the tree, where her blood dripped, thick and slow, over the apple.

 

The thunder roared louder, seemingly rolling across the fields to mix with the screaming wind and the shrill cries that she hadn’t even noticed were escaping from her. And then, as suddenly as it began, the wind died. Still trembling, Kinah looked up at Ben, only to find his gaze fixed back at her. Or rather, just behind her.

 

Spinning around, it took her eyes a moment to adjust to the light erupting all around the tree. Flames licked at the hem of her skirt, and before she could scream again, a man stepped from the center of the fire. Only, “man” seemed too light a word for the figure. Easily towering over even Ben, he seemed a mix of royalty and unadulterated power. Even as her mind refused to acknowledge it, Kinah knew she was looking at the orisha of justice and war himself.

 

“Chango…” Ben’s harsh whisper echoed her thoughts.

 

Behind them, Tobi spewed venom and grabbed for his whip again. A single wordless look from Chango had him dropping the bundle of leather, the telltale hiss of skin and smoldering flesh letting everyone know what had happened. In the blink of an eye he ran off, gripping his burned hand as he called blindly for help.

 

It was then that the rumble of thunder began to blend with the distant pounding of a drum beat.

 

Ben fell to his knees in front of the deity, and Kinah watched in wonder as the raw slices of flesh that had been sliced open by Tobi’s merciless hand sealed themselves. Behind Chango, the fire died down, and a doorway appeared at the base of the tree. Feeling her brother’s hand wrapped around her own, Kinah felt the warm embrace of hope for the first time in her young life. Together, they walked towards the door.

 

Towards uncertainty and, for the first time, a future.

Awesome Stuff of the Week

 

Being a woman, I have been known to adorn my face with the beautifying products known as makeup.

 

Wait a sec… I am a woman. I am female. [Fe] + Male = Iron Male OMG I AM IRON MAN!!!! Where’s Jarvis?! Why isn’t he writing this for me??? Sorry. I digress. Where was I? Oh yes, makeup.

 

As it turns out, my face is sort of special needs when it comes to cosmetics. Lupus has this God awful way of causing all kinds of rashes and dermatitis and red spots and drama. About 4 or 5 years ago, when the skin symptoms really started making an appearance, I set out on a sort of quest to find makeup that wouldn’t aggravate my skin, but still offered coverage. Good gravy, I had no idea it would be such a painful process – and I do mean that both figuratively and literally.

 

I tried all kinds of things, from liquids to powders to creams and back again. My face went from breakouts to blisters and rashes and I was pretty much convinced I would just have to go around bare-faced for the rest of my life.

 

Enter Colorevolution. It’s a mineral makeup company that actually creates spoonie-friendly makeup. Not that that’s what they set out to do. Turns out that they just create makeup that is made from actual minerals, without gunk and fillers. (I found out the hard way that most mineral makeup companies – even the big name infomercial ones – use a heck of a lot more than real minerals in their products. Hello, rash)

 

At any rate, I have no intention of ever going back. Not only is this stuff easier on my skin than everything else I’ve tried, it costs a whole lot less than you’d think. Check out their website for specials, but honestly even at regular price I think it’s more than fair. Plus, they make eye shadows and lip glosses in a zillion colors, and have makeup for just about every skin tone. Even Latinas who are far paler than they should be.

 

Oh, and if you’re worried about coverage, I think it’s worth mentioning that this is the official makeup being used on Rupaul’s Drag Race. And if it’s good enough for those ladies…

 

As usual, I am not affiliated with or getting anything from the awesome stuff of the week products.

What Was I Talking About Again?

 

So Saturday night, I was in my kitchen, baking a cake to take to a family Mother’s Day celebration the next afternoon. And I was confused. Seriously confused.

 

Sure, I had flour in my hair and a vague handprint on the butt of my shorts, but that’s not what was confusing me. Hey, that’s pretty much par for the course for me when it comes to baking. I love to get all creative in the kitchen, and can cook a five course meal without a problem, but can’t seem to create a dessert without creating a subsequent mess all over myself. No, my befuddlement was a direct result of simple math.

 

See, I was doubling the recipe for cake batter, in order to create a two layer cake for my grandma. And that meant I needed to figure out what 2/3 of a cup of melted butter was, twice. Pretty basic calculation, and on any other day I would have quickly melted up a cup and a third and been on with my mixing and mess-making. Only that’s not how it worked. I was just standing there, butter dripping onto my socks, concentrating as hard as I could to figure this out. And the harder I tried, the cloudier my thoughts became. It was like trying to add simple numbers with a head full of oatmeal.

 

Fibro fog. Brain fog. Cognitive dysfunction. Call it what you like, it’s one of the most frustrating and difficult aspects of fibromyalgia to deal with. Whether it comes from the sleep disturbances that accompany fibromyalgia or as a result of your brain’s response to all that pain, or another reason altogether, doctors still aren’t sure what causes the memory loss, clouded thinking, confusion and panic attacks that come compromise fibro fog.

 

For me, brain fog is also one of the hardest symptoms to try and explain to other people, as well. How do articulate that your mind seizes up and simply won’t work? How do explain that you walked into the same room four times and still can’t remember what you’re doing there? Or that you suddenly can’t remember how to spell basic words or add 2/3 and 2/3? And that the harder you try the more likely you are to fly into a blind panic about the whole thing?

 

I guess you just try your best. And, when you can’t add measurements, remember that Google is your best friend.

I’m Sexy and I Know It

One of my absolute favorite parts about my job is getting to write fun and feisty content for unexpected clients. Today, purely by accident, I discovered some of my articles seem to be living a much wilder existence than I am.

 

A while back, I sold a couple of erotic short stories to the site Simply for Lovers, which sells adult toys and lingerie and has all kinds of steamy tips, tricks and naughtiness. I probably don’t have to tell y’all that the link is NSFW, but I’m giving you fair warning anyway. So if you get caught by your boss, or your husband or what not, I don’t want anyone blaming me. Actually, come to think of it, it probably wouldn’t be such a bad thing if your hubby caught you, right? All wanton and breathless and heaving bosom and take me on the desk… ok wait, this blog is sort of bordering on NSFW-dom right now, isn’t it? Anywho, both stories seem to be doing well, although this one has gotten quite a few enthused responses, which makes me a happy writer. Here’s the second one, which was also well received, so yay.

 

Come to think of it, I could probably be totally content making a living as an erotic storyteller type, should anyone be inclined to pay me to do that. HINT HINT, PENTHOUSE – I’M AVAILABLE!

 

Also, I discovered today, quite by accident, that another couple of my articles, which I sold through a third-party agency, were actually bought up by an escort service in Vienna. Check them out here and here and, duh these would also be NSFW. Oh, and if you’re ever in Vienna and you’re into that sort of thing, there are some remarkably attractive women up for grabs, just sayin.

A Little Awareness Coming At You

So May has arrived, and seeing as though ‘tis the month of lupus and fibromyalgia awareness, and seeing as though I carry the badge of both lupus and fibro warrior (I’ve got the scars to prove it!) I thought I’d share with you some websites and blogs that are doing a whole lot to increase awareness and funds to fight these two big bad diseases.

 

Don’t know much about lupus or fibromyalgia? Don’t feel too bad… neither is very well understood, or spoken about much. And despite the fact that lupus affects more people every year than AIDS, MS, Sickle Cell Anemia, Cystic Fibrosis and Cerebral Palsy combined, there is actually very little happening in the way of research and new treatment options. In fact, the last major advancement in lupus treatment was about 50 years ago. I will be adding some more info throughout the rest of May on Lupus and Fibromyalgia. For now, here’s a look at some websites that are representing the fight.

 

Metal Mama Designs on Etsy

http://www.etsy.com/listing/130342621/spoonie-pendants-awareness-jewelry-for?ref=shop_home_active

So, the problem with most awareness jewelry is that it’s, well, ugly. Sure a purple rubber bracelet is ok and all, but it’s not really a new and inventive concept any more. Nor is it winning any fashion awards. This Etsy site has all kinds of cool handmade spoonie jewelry that’s cute, fresh and downright pretty. Plus the creator will personalize absolutely anything for you. It’s all surprisingly affordable, but for an extra 10% off, use the code AlannaRocks.

 

The Spoon Theory

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

 

Anyone who’s ever tried to describe what it’s like living with an illness or chronic pain has probably struggled with how to tell their friends or family about their daily fight. The spoon theory, written by Lupus fighter Christine Miserandino is hands down the best way I’ve ever found to explain my situation. (It’s also where the term “spoonie” comes from.)

 

Tune Into Your Autoimmune (Facebook Page)

So I was lucky enough to meet this page’s mod, Lena, via Twitter. She’s a feisty chick who doesn’t let her MS or her fibro stop her. Plus we share an off-beat sense of humor and she bakes zombie cakes. So yea, cruise on by the FB page and say hi to her. And if you know anyone who’s dealing with an autoimmune disease, send them there. Now. Do it, I’ll wait…

 

Hurry Up!!!

 

Ok, so that’s my starter list for awareness pages that rock. I’ll be adding to it as the month rolls by, so if you happen to know of any pages, blogs, or other sites that are fighting the good fight, let me know! Otherwise, go give these pages some love.