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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Positive Speckled ANA

Positive Speckled ANA

The results of the antinuclear antibody (ANA) test are in! They are: positive, speckled, high and with a ratio of 1:640.

Now, to temper my enthusiasm a little, I should probably remind myself there is an entire laundry list of potential diagnoses to consider—from drug induced lupus (I do suspect temozolomide, one of my chemos, screwed me up) to hepatitis to Sjogrens and even…fibromyalgia.

[Blinks annoyedly into camera.]

So I don’t have answers, per se, but I do have reason to believe we’re finally getting somewhere. After years. Again.

For comparison, in 2015’s ANA test, I only had a ratio of 1:160. Then in 2017, while hospitalized for the brain tumor and on the mother-of-all steroids, I tested negative. The change is noticeable and significant. (Thank God for MyChart’s search function!)

It’s not clear to me yet what’s going on, but fuck if I don’t feel a little bit hopeful right now. Like maybe I’ll be able to take a shower again without wondering if I’m living in my own tiny post-apocalyptic hell.

Dan is cautious of me getting too convinced of anything too soon, and honestly that’s kind of a buzzkill. But I’m not unreasonable. I get it. 

It doesn’t stop me from saying I have every Sjogrens symptom known to man, but I get it.

I just want so desperately to have a reason to hope I can spend some time not in bed, not miserable, not so tired and weak I have to hobble to the toilet. I’m sick of strategically leaving doors open to conserve energy.

Yes, the batteries are that low.

And if I could just have a steroid, please, instead of worrying it will mask something important—I promise I’ll be good! And not complain about the weight I put back on because everything tastes marvelous again.

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Infectious Disease Appointment Scheduled

Infectious Disease Appointment Scheduled

I have an appointment with an infectious disease doctor! It’s not until the middle of May. On the one hand that feels so far away. On the other hand, I really need the bills to be spread out so I have time to raise money, so…yay?

While poking around in my patient portal, I realized there are a couple of outstanding blood test results from Friday’s visit with Dr. Onc. 

One of them, an ANA test, is a repeat test I remember having at least twice prior to my brain tumor diagnosis. It was irregular then, but those results were not actually helpful. So I don’t anticipate getting anything valuable from the results this time either. 

In fact, while reading up on it again and discovering how uselessly hedge-y the interpretation of antinuclear antibody test results can be, I wonder why it’s ever ordered. 

Whatever. There’s always a chance it’ll provide a clue. Right? I guess? Maybe?

The other is an HIV test. Dr. Onc just shrugged at that when he mentioned it, as I recall. Y’all, he’s trying. Seriously trying. 

It’s really hard not to be mad at my body, but I think it’s more accurate to be mad at my blood. It never, ever reveals anything helpful. At least my brain is like, “would you please look at this fucking thing?”

[Please pardon me while I take a moment to process the resentment I have for the nurse practitioner who laughed at me for using the word “seronegative” back in 2016—presumably for not buying formal medical training entitling me to use terminology we’d both understand.]

Anyway, thanks to my friend Eva, I’ve got some extra birthday cash to put towards my bills. It might seem like a not-fun way to spend birthday money, but I assure you it’s worth the lifted weight to get closer to a zero-balance. Particularly with the cancer center.

It might not always seem like it by my writing, but I want to state for posterity that the people who do the work do deserve to get paid well for it. It’s the US healthcare system that puts the strain on me now. Jacking up prices and hurting patients are the inevitable consequences when the insurance company’s only goal is profit.

But now I’m just repeating things I’ve said a thousand times before.

Have a nice Monday.

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