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…

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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.