Hello everybody. I hope you’re having a good week. Me, not so much. As you can tell from the title of this post, I’m having a lupus flare. Which is not fun. For those who don’t know, lupus is very random. It comes and goes, and when it comes, slapping you down, it comes hard. And that is a flare. Lots of things can cause it: stress, certain medicines, the sun, astrological projection, the evil eye. Who knows?
In this particular case I think it might have been the sun. I was out in the backyard picking up sticks and fallen branches from a magnolia tree that the city pruned last month, brutally pruned actually. (Don’t get me started.) And they left a lot of debris behind. The point is, I was out there for about half an hour, and half of that time I was in the shade. But it was enough to cause a lupus malar rash on my face. A malar rash is distinctive to lupus, a butterfly-shaped rash across your nose and cheeks. Mine isn’t the exact butterfly, and right now it’s not that dark. I’m hoping it goes away soon. They don’t always last long. I’ve never had one before, so this is a first. ←Not to be celebrated.
Not being able to go out in the sun is the pits. I love sitting in the sun. I don’t sit out there for long, because I’ve also had melanoma on my left arm. But a couple of minutes in the sun (wearing very strong sunscreen) will cure just about anything that ails you. I have always been a firm believer in this. But, ironically, it won’t cure lupus, which is good, since I can’t do it. Not only is it now causing this malar rash, but it gives me a distinctive sun rash on my arms and legs, too. And, just a quick reminder, I live in North Carolina. Which has a looooooong coastline and gorgeous beaches. Outer Banks, anyone? Crystal Coast? Brunswick County Beaches? Not to mention, I have a sister who lives at the beach!
My lupus hasn’t really ever been in remission since I was diagnosed. I’ve had minor aches and pains and other lupus symptoms, and fibromyalgia (lupus’s whore of a cousin) stuff that came and went. I ordered these arthritis rings on Etsy to help with the finger joint pain. I’m not sure how I feel about them yet. They just arrived today. The pain in my fingers is what originally sent me to the doctor and resulted in the diagnosis, and has been pretty constant, although it jumps around to different fingers. That’s another weird, random thing about lupus. Each day can bring different symptoms. I also have joint pain in my TMJ (jaw). I guess that’s not unusual with lupus. I’ve had that for almost a year now. My eyes are severely dry and now can get to feeling like the Sahara. (And dry mouth? Ick. Hate. This is another new one.) [For those who don’t know, severely dry eyes can cause a muscle twitch in your eyelids. That’s about as fun as it sounds. It makes me look like Peter Lorry in Casablanca, or The Maltese Falcon. Or any Peter Lorre film, really.] Anyway, I have also been a raging moody bitch lately. (Just ask my family. Which, btw, may or may not be due to lupus. Who can tell?)
I don’t have time for lupus right now. I’m taking care of my husband—who is recovering well, but he still has limited mobility and needs a lot of help—and I’m trying to finish a book (SOON!!), and I’ve got a new editing job coming in. (Hmm. Maybe it wasn’t the sun. Maybe it’s, I don’t know, stress?!) I’m just complaining because this is my party and I’ll cry if I want to. But, also, even though my aunt had lupus, before I was diagnosed I really didn’t know much about the disease. Even though it’s pretty prevalent, it doesn’t feel like it gets a lot of press. So I feel like sharing my symptoms and my story helps educate my corner of the Internet.
My favorite things this week:
Choceur Dark Chocolate*, which I buy from Aldi. You get two favorites with this one. This is the best chocolate you can buy at a grocery store. It is so good! And Aldi is so underrated. They have the best chocolate, the best cheese and dairy products, some really great vegetarian options. And so many European staples, which my Austrian husband loves. I love Aldi.
I got this big, yard wind spinner last year. Mine isn’t on the Etsy shop anymore, but this one is similar. It’s getting a nice patina, and looks so cool in my yard. When the vole killed all my young trees in a vine-covered area in my yard, this wind spinner kept it from looking too empty. It is currently giving me great joy because it looks a little like a tree, and as the trees start blooming it fits right in.
My new phone case.
Quote of the Week: (this one’s for my daughter, who just broke up with her boyfriend)
Don't cry because it's over. Smile because it happened.
Dr. Seuss
*Amazon link. I may get a commission if you click on the link and buy anything.
Lupus really does suck! I know it from my nursing career and an old friend has it. I love that you can just rant about all the s*** going on in your life. Everyone should get a free rant at least every three days, don't you think? May strength and love be with you and your family.
Rachel
Hello Samantha, there is help for you so this is what I recommend to you the following websites. Plushcare.com, and markstengler.com. If you check them out I am sure they can help you out. this is intergrative medicine at its finest. I hope you contact them because I want you better for yourself and for your family. Good Luck. Monica t.