I used to think summer was the worst time to have Sjogren's, what with the heat and the sun and all, but today I'm pretty sure that winter - cold winter - is the worst.
Despite running my dinky little humidifier nonstop for a couple weeks now, the cats still crackle with static just a bit when i pet them. My skin is dry and ashy and starting to crack in places (my hands, mostly). Tonight was the cincher, though: nosebleed. gah!
I drink what I think is plenty of fluids. today was an average day, and I managed to down 80 ounces of water (four bottles of 20z each) and two cups of coffee (one half-caff, one decaf, about 16z each) at work, a cup of soymilk with my morning meds, and another two glasses of water since I've been home. About 156 ounces by my calculations, which is more than a gallon of fluid ingested in about 14 hours. Shouldn't that be enough?
No. It's not. It never seems to be enough. I still feel like Cassandra in that Dr Who episode and the more water I drink, the more I feel like I'm going to float away, without actually feeling like I'm not thirsty anymore. Sometimes I'll add Crystal Light to my water, but I find that there's something about the artificial sweeteners that make me crave sweets. The lemonade/pink lemonade are much too dry/tart for me. Surely I'm not the only weirdo, right? Maybe homemade electrolyte drinks would be the answer?
I've been on Evoxac since pretty much the beginning, and it does help. Skipping one of my two daily doses leaves me having to pry my lips off my teeth and my tongue from the roof of my mouth if I'm not constantly sipping something, so you would think I'd be better about remembering that 2nd dose. I may try adding the recommended third daily dose, but I find it challenging to work in mid-day meds - how do I carry them, when to take them etc. Evoxac also has the side effect of making me sweat more, and after six years I've finally adapted, so I'd rather not go through all that again.
There doesn't seem to be an Evoxac equivalent for the eyes and nose. Really and truly, can't I just pop my eyeballs out and soak them for a bit so they'll be nice and wet like a sponge?? And how do i keep my nose moist without snorting water and stirring my deep dark fear of drowning??
Nor is there any good way to get anywhere by car right now without completely dehydrating myself like beef jerky. it was a brisk 9 degrees this morning. I bundled up best I could, but I had to crank the heat/defroster all the way to work, and being in a convection oven on high for 20 minutes is not my idea of a good time.
I would love to know how other people cope with the dry dry air of winter, Sjogren's or not.
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