Well, I’d been doing pretty well for a while. Yep, I’ve got my medication, I’ve got my sunscreen, hats, umbrellas, I take my naps and go to bed early. I eat well, and try to keep the stress down. I don’t exercise enough, but hey, do any of us? Yeah, I was doing pretty well….
The last six months or so, I’ve been having some new symptoms that hit me every once in a while. In addition to the current list of Lupus weirdness, I have now added this new thing, a new kind of Lupus flare, and it kicks my ass. The thing that is really annoying me is that I can’t figure out the trigger. When I get the rash, the fatigue and exhaustion, and the nausea, I know I have spent too much time outdoors and have gotten too much sun. And let me tell you, too much, it’s not that much. The new flare symptoms seem to hit me out of the blue, it starts in the morning, when I wake up with a blistering head ache, and the muscles that move my eyeballs feel like they are on fire. I am nauseous, and about a half hour to an hour later, I am vomiting. And for those of you who really know me, you know that I don’t vomit easily. This means I can’t keep my meds down, so my symptoms get worse. This flare lasts for about a day, where I’m either vomiting, or sleeping. Not just napping, but sleeping all day long. I don’t think I’ve ever been so exhausted. Things start calming down by evening and I try to drink some water and then go to sleep for the night. You’d think that since I’d been sleeping all freaking day, I wouldn’t be able to sleep through the night, but nope, I sleep like a rock all night long. By the next morning, I can tolerate my meds, a little tea and toast, but I’m still exhausted, napping or at least not doing anything more than a little couch potato action. I start to feel a little better and can eat a bit more normally. By the third day I’m still tired but not nearly as exhausted, I can eat almost normally, and coffee tastes good again. And that is my weekend, wasted being sick. Ok, enough whining.
I’ve been to the Rheumatologist, he said yep, it’s Lupus, and I now have a new medication. This new medication is to stop the nausea, so I can then keep my regular meds in my belly long enough to help with the Lupus flare. I can also take something for the pain, which helps. The anti-nausea meds work and that seems to help that part, but I still have to sleep all day and rest the next. It doesn’t make the flare any shorter, but makes it more comfortable, if that makes sense.
Friday was my day off and that’s when this started this time. Its Sunday evening and I’m just feeling almost normal, I even did a load of laundry. I got some pretty good kitty time too, they like it when I stay in bed with them, and they keep me company. I get to go to work tomorrow and I have clean underwear, so I’ve got that going for me.
I’ll be trying to figure out my new trigger, I haven’t a clue at this point, but I’ll keep trying. Then I can adjust my, activities, diet, or rest to try to find the balance between living my life and Lupus.
I’m thankful for having my dear husband, who brings me home chicken soup, and brings me water. For my kitties who keep me entertained, and for the things that I can still do that bring me joy. 