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!

Rheumatology Appointment

Rheumatology Appointment

I fully intend to get to the rheumatology appointment. But first I want to write about how I can still write, and what a joy that is.

The last time I had a job (conventionally—I don’t mean to imply that chronic illness and disability aren’t vacation-less, salary-less jobs) I was a technical writer for Wolfram. One of the things I did there was draft online help articles for the company’s software, Mathematica.

Well, today I woke up to a thankful comment on my recent, totally out of place help article here on this site. The one where I explain how to pair smart devices on Spectrum 2.4 GHz Wi-Fi. And it was so validating! Not only does it mean I can still communicate helpful things, but I also probably was good at my job back then!

This is a ridiculously big deal to me. I know I can’t do tech writing gainfully these days, but that I can do it at all? That some part of the old me still lurks in here somewhere? It’s important to me, turns out. That comment made my Friday.

But moving on to my much-dreaded doctor’s appointment. The TL;DR for those of you who care (but not that much) is: I gave up a lot of blood, and I go back to rheumatology in a couple of weeks for the results.

The nurse practitioner (NP) recommended I still see infectious disease, but I can only worry about one thing at a time right now. Anyway, the fact that she mentioned infectious disease makes me think my symptoms don’t make any diagnosis seem too obvious.

She did say that my ANA results were a true positive, which is helpful for not having my symptoms dismissed right out of the gate.

My issue all those years ago was my 1:160 ANA ratio (or whatever, I might have the number wrong) was too low to be medically relevant. A certain portion of the healthy population also returns those results. Which, one might argue, is why patient symptom reporting should be taken seriously. But that’s an old rant for a shitty doctor and one I don’t feel like thinking about today.

You’re welcome.

Bottom line assessment of the NP and doctor I saw yesterday: caring, professional, smart. The bar for care was low, thanks to my misgivings about the reasonableness of the Missouri legislature, but I would be fine with treatment from either of these two—even here in Illinois.

So, as I said, they took a lot of blood. Somewhere around 6 or 8 vials. (I’m not sure because I didn’t look. I’m usually fine looking, but I knew there was going to be a lot, and I was overheated. So out of an abundance of caution…)

It’s not the most I’ve ever given up, but by comparison my standard chemo draw was 2 vials during treatment.

If phlebotomy is your kink, partner up with a rheumatologist. Follow me for more relationship advice.

All in all, it wasn’t as horrible as I dreamed it would be. But I still can’t have steroids until they know what’s going on. They’d mask any autoimmune findings. I knew this would be their answer, but I had to try. I’m all kinds of desperate. I’d have cried yesterday if I could make tears.

Next rheumatology appointment July 8. Watch this space.

Are All Rheumatologists from Hell?

Are All Rheumatologists from Hell?

Rheumatology rant incoming. I didn’t sleep last night, and there are going to be f-bombs in the paragraphs that follow. If you stick around for this post, welcome. If you’re not in the mood, you might want to look up cat videos or something on another site, because I’m having a PTSD bout, and I am pissed. 100%. From concentrate.

First, a refresher. I was referred to a rheumatologist by my oncologist over this whole swollen lymph node thing. I have had a second (after some years) positive, speckled ANA, and a host of unexplained symptoms. I’ve been through three biopsies, had a fuckton of imaging done, and am medically bankrupt AGAIN.

I can’t drive. I can barely walk. And I am in all-over pain every second of every day. I spend my extremely limited muscle energy going to medical appointments, eating, and making sure I get to the toilet before the magic happens. Yet daily I try to maintain my humor and give people the benefit of the doubt.

Not today, though. Today I unleash my last couple of fucks on this blog. Those bitches want OUT.

Because I was a new patient to the referred rheumatologist, two appointments were scheduled at the outset: one for the initial consult and one a couple of weeks later to go over lab results.

You may recall that I wasn’t thrilled about going to Missouri for the appointments, was discouraged that I’d pay out the ass for more unhelpful shoulder shrugging, and also my insurance was changing. Nightmares all the way around.

When no one was available to take me to suburban St. Louis and then the car broke down, I wasn’t exactly upset about having to cancel those two appointments. That much is true. But I didn’t dawdle about letting the office know I couldn’t make it.

I went back to my oncologist for my routine follow-up in May. He asked me why I didn’t go to rheumatology (or infectious disease, but that’s not relevant to this rant). I didn’t have energy to go over the sordid details with him, so I went with an honest summation: I needed a break.

Dr. Oncologist understood but urged me to at least see a rheumatologist because of the ANA test results. I was reluctant because fucking Missouri, man. But I agreed.

I called rheumatology to reschedule, didn’t get an answer, listened to the “you will be charged $50 for cancelling without giving 24-hours notice message” and didn’t leave a smart-ass “even if I’m in the ER?” voicemail. I did, however, leave my name and number.

Crickets from them for over a week.

I called again and got through today, and the woman who scheduled me said “You’ve cancelled twice. One more cancellation and we won’t reschedule.”

I held my tongue. I’m sure she didn’t make the policy, and I don’t swear at messengers.

But I’m going to guess she doesn’t read this blog and ask: What the FUCKING fuck kind of fucking policy is that for any fucking doctor to have?

I’m triggered over this because I’ve never had a positive or medically enlightening experience with a rheumatologist. First, there was the Rheumatologist from Hell who misdiagnosed me with fibromyalgia. Then there was the rheumatologist after him who “didn’t treat fibromyalgia patients.”

And now this fucking guy.

I had brain cancer the whole time rheumatologists 1 and 2 billed me for nothing and did nothing, respectively. I still have it now.

So, yeah, not in a terribly accommodating mood at the moment. And I could explain that I have fucking brain cancer. That I can’t drive. That I was recovering from a surgical biopsy with a host of other miserable symptoms. But I shouldn’t fucking have to. I should be treated like a human being and so should anyone else, cancer or not.

Fuck these assholes and their assumption that everyone cancels because they don’t appreciate a doctor’s time.

There are certainly things I don’t appreciate, but that isn’t fucking one of them.

Am I potentially making a bad situation worse by blogging about this publicly with a unique last name and rare diagnosis? Yes.

Do I care? Fuck no I don’t.

End rheumatology rant.

When Things Don’t Go Well: Cancer Edition

When Things Don’t Go Well: Cancer Edition

Tried recording a little bit of voiceover for a brain tumor friend’s Rock Opera charity thingy, and sometimes these things don’t go well. At least not lying down. I will try again later when I’m sitting up. Otherwise the recording is just going to need a lot of editing.

Monday evening didn’t go well either. There was Taco Bell and a giant stomach bloat, and then a forced shower I wasn’t planning on. 

I think it’s because the cleaners were late? See, we usually order food when they’re done, but they didn’t leave until 4:30, and I usually order by 2:00. That’s a little late for lunch, but it’s usually fine.

However.

When I don’t eat for a long time, and then eat a lot quickly because I am super hungry? 

BOOM.

Just keeping it real. I know how everyone thinks having brain cancer is so glamorous. 

While I whined about the unbudgeted energy I had to use up showering, I lamented that I broke my own 24-hour rule.

The rule is: you can’t make a mess here for 24 hours after the cleaners come. That way I get to enjoy a tidy home once every two weeks. It’s a rule that has historically applied to the pets, but it has since expanded to be the reason we don’t cook here every other Monday.

Well, we have to DoorDash way more frequently than that, but you know what I mean.

One thing I need to do now that I have additional insurance is postpone my rheumatology appointment this week. I’m thinking sometime in June now. But I don’t know, we’ll just see what’s available after coverage starts and what I think I can reasonably expect of myself. June is supposed to be routine MRI month too. And that’s also a whole-ass thing.

The inner dialogue I have regarding the rheumatologist sitch isn’t going well right now either. There’s a whole lot of me saying to myself: just cancel it. It’s going to be a huge waste of time.

That’s the fun of chronic illness. Wanting to be better, but getting nothing but extremely expensive and increasingly exhausting non-answers.

So, yeah. That’s what a blog post looks like when things don’t go well. A lot.

My Body is a Wonderland

My Body is a Wonderland

As anticipated, the antinuclear antibody (ANA) test results triggered oncology to refer me to rheumatology. What can I say? Chronic illness. My body is a wonderland.

I’ve been to a rheumatologist before, and that, uh, didn’t go well. So I need to be on the lookout for any signs my anxiety-prone mind is starting to spiral.

I feel hopeful and relaxed now, sure. But they don’t call it trauma because it just goes away and you’re never reminded of it again. It feels weirdly like I’m being vigilant about my tendency toward hyper-vigilance.

Sometimes it do be like that.

The doctor is in St. Louis, which I don’t like for a few reasons. I mean, St. Louis is a fine city, but I wish it were a city in Illinois.

Missouri is bass-ackwards when it comes to the political stuff, which more and more seeks to strangle what choices doctors and patients have. While it might not affect me in this particular situation, it’s the principle. And on principle, I’m pissed.

But this is not a post about that. And anyway, if you don’t already know my politics, you must be new here. (Hi! A few blog clicks should give you all the context you need.)

Back to this present medical mystery and enduring chronic illness. I suppose it doesn’t really matter if I had something rheumatological going on this whole decade, but it’s definitely a thought that’s crossing my mind. Because even the Rheumatologist from Hell™ managed to tell me there was “something autoimmune” going on back in 2014.

Not that he was the least bit curious what that might be.

Ahem. Stay on track, Emily.

So were those autoimmune findings separate from or related to the brain cancer? Getting shingles can trigger some shit, and chemo can screw up immune systems. Plus they intentionally nuked my thyroid 20 years ago. My gallbladder got sassy and now it’s gone. The last PET scan, my liver was like, “Hey, girl! Have a node! Muah!

So if it started with something autoimmune, it wouldn’t be surprising that it’s worse ten years and some-odd cancer treatments later. Right?

As I was saying, my body is a wonderland. Just not in the sexy John Mayer way. It’s more the riddle-wrapped-in-a-mystery-inside-an-enigma-that-results-in-the-atomic-bomb way.

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