Maybe you read yesterday’s post, maybe you didn’t. It’s worth a read to realize how stupid and mind boggling this next ailment is. If you don’t want to read it, here’s the super quick recap: I have Raynaud’s. It causes my hands and feet to turn ice cold, blue, purple, and/or white, numb, and super painful. Got it? Good.
A couple years ago, I started noticing that while I’d just be chilling out watching TV, my hands would suddenly feel really hot. You see where I’m going with this? Yes, I said HOT. Just minding my own business, and suddenly, they’d feel like THE SUN. Okay, soooooo I’ve had Raynaud’s for 24 years. While it’s not pleasant, I understand it, and I’m used to it. It throws me a curve ball every once in a while, but never a flaming hot curve ball! The hotness would come and go, but not often enough to keep it in the front of my mind.
Then it started happening to my feet too. I like socks on most of the time in the Winter. But suddenly I had been finding myself at night, running to my room, stripping my socks off as fast as I could, diving into my bed, and rubbing my feet all over the cool sheets, letting out loud sighs of relief. From an onlooker’s perspective, I’m sure I look like quite the crazypants. But still, it wasn’t happening all the time.
But now, as the “you know what” is hitting the fan with all of the ailments of my life, this is starting to switch into overdrive as well. Yay for me being an overachiever! Now, the hands are happening at least every other night. And feet at least once a week. And while it may not be quite as painful as the numbness of Raynaud’s, at least I can stick my hands up my husband’s shirt to try to fix them 🙂
When I get the hot flares, I have to find something cold, and that’s harder to come by. I have to go searching for something. This sometimes means molesting a cold water bottle. Or repeating the dive and rub maneuver explained above only this time with my hands. Last night, you first would have found me smearing my hands up and down the front storm door. I’m sure that looked really great to the neighbors! When that only provided temporary relief, I had to run my hands under COLD WATER…when I have Raynaud’s…Which freezes my hands. WTF. How ridiculous is this? But Wait! Don’t let them stay in the water too long, or I’ll trigger a Raynaud’s attack!! Learned that the hard way! Isn’t this MESSED UP?!!
So I finally looked this up, and it is a thing. It’s called “Berries, you’re screwed.” No wait, that’s not it. It’s called erythromelalgia. Apparently it’s, wait for it….rare! But it does happen where people with Raynaud’s can also get this lovely opposite ailment. Who doesn’t love a good opposite? It does seem like I actually have a relatively mild case of it, but it still sucks. a lot.
Now, just like with that sneaky bugger Raynaud’s who can just creep up and take over my body whenever it wants (usually with some kind of cause but not always), now I have it’s bastard step sister lurking around, ready to strike. Whenever.it.freaking.feels like it. Just ready and waiting to set my hands or feet on fire. (hands are much more uncomfortable/painful) What sets off a flare you might ask? I have no clue. So I can’t even try to prevent one.
Here’s erythromelalgia in all it’s hotty pants glory:
It may not look like much, but it feels like this:
Yesterday I was Elsa. Today, I’m Te Kā from Moana. SO DON’T MESS WITH ME. Either way, I’m can kick your @@@.