I’ve spent the past two days kicking myself in the rear for running around with my sunblock. What I thought was a scratch, has mutated overnight into one of the more painful heat rashes I’ve ever had in my life to date. It never fails- over the fall and winter I magically forget the havoc that heat and sun wreak on my pasty bod. Then the first sunny day comes, I get all excited and run outside without the proper preparation and bam! blisters.
I also find it hilarious how having lupus is so much more like being a pop culture vampire than a wolf – which is what the very word lupus means.
Let’s tally up the similarities shall we?
Oh yeah and just for the record, I’m talking more about the pop culture vampires I grew up with from the 70’s to the late 90’s- my classics include Forever Knight, Buffy (both the corny movie and awesome television series), and Dark Shadows (the only soap opera I’ve ever watched). If you’ve never heard of any of those shows – well, I weep for what you’ve missed.
So you might have Lupus if…
- Daylight is not your friend. Let’s face it- real vampires don’t glitter in daylight. They sizzle, roast, blister, burn, boil and explode. Believe it or not, so do I….well I haven’t exploded yet, but sometimes my skin sure feels like it. In the winter, it’s not that bad (for obvious reasons), but once I get hit with the sunlight + heat + humidity triple wammy, I’m usually down and out for the day. My standard SPF is around 50, higher if I can find it, though staying in the shade is really my best bet. The Lupus Foundation has a great article about lupus and sun sensitivity that you can read for more information.
- People sometimes think you’re dead. True story: When I was a wee little Ro I went to a sleep-away camp for two weeks. Three times during that stay, I would overhear the other girls whispering about me while I was half-asleep. Surprisingly, they weren’t gossiping about my weight or my clothes or anything like that. Oh no, they were wondering why I wasn’t moving and if they should get the camp counselor to check my pulse. Yep. My tent-mates thought I had died in my sleep. More than once. Though, to be totally honest, sleeping does rank among my top favorite hobbies. That probably doesn’t help much.
- Your face distorts into some creepy monster face. While lupus itself won’t make you sprout fangs, anyone who’s been on high enough dosages of prednisone (one of the most commonly used medications for treatment) has had a similar experience. Being a steroid, one of prednisone’s most distinctive side effect is causing the face (among other body parts) to swell up. It’s called having a “moon face” and can range from being barely noticeable to severe. During my last big flare, my face was so bloated from medication that it was downright painful. Not to mention I felt like Jabba the Hut for five months.
- Your doctor starts telling you to take your steak bloody. On top of a million other little bodily quirks that may or may not have anything to with my Lupus, is chronic anemia. Anemia means that there isn’t enough iron in my blood, which can contribute to chronic fatigue and other problems.
Of course, this is just me and a few of my symptoms. And, obviously all this is taken with a grain of salt. But hey, nobody ever said that having a sense of humor ever hurt, right?
Are there any humorous ways that you can view your illness? Maybe instead of Dracula, you feel more like the Wolfman or the Creature from the Black Lagoon? And while in my examples are old movie monsters, keep in mind that if you read enough stories, see enough movies, you’ll see that not all “monsters” are shown to be villains. Even those of us on the outs of “normality” get our shot at being the heroes.