I Might Have Lupus! Hooray!

I Might Have Lupus! Hooray!

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.

The NP says “It’s always lupus” btw.

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!

Why I Want to See an MS Doctor, Part 4

Why I Want to See an MS Doctor, Part 4

Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember. Oh yeah, Multiple Sclerosis maybe.

fibromyalgia-meme

And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.

It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself. But I still want to see an MS doctor.

Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”

***

Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…

Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.

***

Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”

For me, fibromyalgia is an undiagnosis*.

At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.

When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.

On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.


*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.

Why I Want to See an MS Doctor, Part1

Pin It on Pinterest