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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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.