Yesterday’s appointment with the rheumatologist went so much better than I was expecting.
“Did you see your lab results?” the NP asked as a way of determining just how much she needed to explain.
“I looked at them,” I said deflated. “From what I understand, they are inconclusive.”
“Yes and no.” She explained my results as essentially this: they can’t confirm a diagnosis of lupus, but they also can’t rule it out.

HOWEVER, there is clearly some funky autoimmune stuff happening, and she and the doctor wondered how I felt about trying Plaquenil (hydroxychloroquine).
Yes, THAT med.
My mood changed immediately. I turned to Dan and said, “Hey! Maybe I can cure some COVID while I’m at it.” And that started a whole bit about Ivermectin and injecting bleach.
She remained very professional as we did our shtick, coping with humor. While acknowledging how absurd those treatments were, she confirmed what we already knew: 45* had no business distributing medical advice.
But this is not about convicted felons or pandemics.
This is about hope.
I didn’t get the steroids I thought I wanted, but I have something to try, y’all! I’m ecstatic.
And instead of hedging about whether this drug will work (it’s a slow burn and might take months to help if it’s going to) and protecting myself with pessimism, I’m going to shoot that hope shit straight into my veins.
I need this. I need to live in the joy of this present moment instead of wondering about the future. (See? Meditation is working.)
Who cares if the med doesn’t work? What I need most now is the possibility that I can feel better. There are things to try and doctors to help me try them.
As my spoonie friend Dawn taught me years ago: carpe diem, bitches. In this moment, I feel better. I’m going to notice it.
When the doctor came in and asked how I felt about giving Plaquenil a try, I think I even used the word “excited.” Not only am I optimistic right now, but no one mentioned peeing in a cup, and I don’t go back to rheumatology until the end of October.
Yee-freaking-haw!
Somebody get Howard Dean in here to help me celebrate.
So, as the rheumatologist explained it, lupus is a complicated diagnosis and the criteria were redetermined in the last five years or so. Swollen lymph nodes are no longer considered.
The way autoimmune things progress over time, though, I may one day qualify for it—or another diagnosis.
In the meantime, hydroxychloroquine could help me feel better and slow the progression of whatever this is.
Bottom line is I might have lupus! Hooray!
Hey, Emily – I hadn’t seen you on any of the suspect social media lately, so I came looking. Glad to see you’re still here, sorry to learn you’re looking for a diagnosis – and by extension, a treatment that makes sense. Getting the diagnosis right is so key, isn’t it?!? And how darkly funny that the recommendation is for hydroxychloroquine. I hope it helps you!
I hope you enjoy your day tomorrow, and congrats on probably not having lupus!
Take care – Barbara, aka eigenseide on twitter, spoutible, mastodon, and bluesky (damn you. Elon!)
I followed you on Bluesky. That’s about the only social media I’m using these days. 😊
What a coinkydink! I came here looking for you too. Glad to see you are still here fighting like the fucking warrior you are. I hope this is the remedy you are looking for!
Thanks for checking in. Still just ranting away over here!
Keeping good thoughts for you, Emily, and sending healing vibes your way. I don’t post much on Bluesky but that’s mostly where I’ve seen you and the sucky journey you’ve been on. You are amazing with your positive outlook and I share your hope for much better days ahead.
Thanks, Cathy!