If It’s Not Lupus

If It’s Not Lupus

If it’s not lupus, I will genuinely be surprised. Wednesday day I had another CT scan from my neck to my nethers. And there’s a lot of stuff messed up in there, but the thing that has me guessing SLE (lupus) is that there’s a new nodule on my lung.

Now, the CT report says “suspicious” for malignancy, but it was ordered by an oncologist at a cancer center, and I think we’ve already discussed how when you’re a hammer everything’s a nail. I probably dismissed a lot of relevant symptoms myself because “brain tumor” and “chemo.”

But here I am, trying to be a whole-ass episode of House.

Maybe I should be more concerned about cancer again, but I’m desensitized to cancer scares like a “conservative” American is desensitized to gun violence. I’m honestly more concerned someone is going to suggest another biopsy, and I will break down in tears at the thought of paying for it.

By the way, I am not strong anymore, and I don’t have to be or want to be. This has been going on too damn long for me to absorb any of that nonsense. So if you’re thinking it, keep it to yourself. I might go emotionally all asplody without warning.

I have an appointment next week with a nurse practitioner at the rheumatology place, where no doubt I’ll be giving up some blood. Maybe they’ll know something no one else does.

Oh, and I seem to have inherited my Mom’s diverticulosis of the colon. Not a major concern right now, but still: annoying-guh.

My list of symptoms is too long to list in full, but the most interesting and bothersome to me are: symmetrical sun-induced rashes on my elbow bends and shins, giant lymph nodes, heat sensitivity, random allergies to new things, and the ever-present muscle pain and weakness.

Basically my bones and joints are the only things that don’t hurt. So in the world of crappy autoimmune diagnoses, I don’t think arthritis is likely. I guess that’s something.

The CT report also mentioned something about a misshapen bladder. “See,” I said to Dan. “I told you all this inflammation is taking up needed space! No wonder I have to pee every three minutes!”

I’m more than ready for a(nother) diagnosis. While I appreciate the professionals not wanting to mask any of my symptoms with drugs, I’d probably sacrifice a small child if he was waving around a steroid prescription right now. Think of it like reverse ‘roid rage.

If this is your first visit, a little background: Positive Speckled ANA

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.

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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