Elizabeth Barone


Tag: mystery autoimmune disease (page 1 of 2)

My Seronegative Life

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via Unsplash

Being seronegative is majorly disappointing, on so many levels. It makes it incredibly hard to get a diagnosis. It makes it even harder to relate to other spoonies.

As one doctor told me, I have the story of someone with Rheumatoid Arthritis… but my blood won’t talk.

Just writing about this makes me want to cry, because it’s so damn frustrating, beyond words. Doctors don’t get me. Other sick people don’t get me. I don’t even get me.

Of course, this isn’t the first time I’ve ever been unable to fit into a category. I’ve always been different. And while it’s a good thing in some ways, not belonging starts to take its toll. I tell my story across Twitter and Instagram hoping that someone will stumble across my words and assure me that I’m not the only one, that they’re in the same boat. And hey, while we’re at it, let’s compare notes.

But in the eight years since I got sick, this hasn’t happened.

I just started Sulfazine because my rheumatologist can only guess that I have enthesitis related arthritis. My blood won’t talk, and nothing shows up on my x-rays and MRIs (except for that one time when no one could explain to me what the radiologist called possible cysts and fluid in my bone marrow). My mystery illness behaves like an arthritic autoimmune disease, but it’s been nearly impossible to tell which one without concrete blood work. And I’m always only borderline—what my rheumatologist calls seronegative. We can only hope that the Sulfazine works and then, based on the results, maybe find a diagnosis.

I don’t want this, but honestly, I’ll make peace with whatever it is, if only I could know what.

Until then, I just can’t rest.

Another Puzzle Piece and Starting Treatment

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via Unsplash

Last week I had a followup with my rheumatologist to talk about the x-rays of my hip. Naturally, the x-rays showed nothing. Disappointment lanced through me. I didn’t even know what to say. Once again, I was at a dead end.

Then my rheumatologist explained that what may be happening is enthesitis.

This is inflammation of the tendon where it connects to the joint. It would explain why nothing ever shows up on my imaging, because x-rays and MRIs can’t see it.

She said that usually enthesitis is caused by seronegative autoimmune diseases like Psoriatic Arthritis, but I don’t have Psoriasis. Another dead end. I sighed.

Then she said something that changed my life: “We can try Sulfazine.”

Though it’s not an immunosuppresant, it is a DMARD (disease modifying antirheumatic drug)—what I’ve been hoping to try.

She ran me through all of the precautions and side effects, then sent me for blood work to get a baseline for my liver and kidneys.

When I got home, I started researching enthesitis and seronegative diseases, and one of the things that popped up was Reactive Arthritis. Reactive Arthritis is caused by an infection. This got me thinking: I had mononucleosis when I was seventeen; my joint pain started when I was nineteen. Could I have Reactive Arthritis caused by mono?

I plan on asking my rheumatologist when I see her next month.

In the meantime, I start Sulfazine today. (I would have started it sooner, but was unable to get to the pharmacy.) Despite the long list of precautions—protecting my skin from the sun is one of them—I’m excited to start this drug. I’ve tried painkillers and steroids, which helped the pain but at a cost. I’ve tried mild anti-inflammatories, which only helped a little. I think I should be scared to start a DMARD, but all I can think of is how different my life would be if I wasn’t in so much pain all of the time. I’m probably getting ahead of myself, but I can’t help it. I’ve been living like this for eight years.

I’ve literally tried everything.

It’s high time for something else.

The Four Words I Love the Most

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via Unsplash

“Your prescription is ready.” Her voice sounded like she was speaking through a tin can, but her words were clear. The refill I’d been waiting for—that I thought I wasn’t getting because my doctor’s office didn’t get back to me for days—was granted.

No words have ever been so sweet.

After waking up in the middle of the night yet again in agony, the constant pain in my hip was taking its toll. Normal, healthy people can’t possibly understand what it’s like to be in pain all the time. The people around me don’t quite know what to do with me. don’t even know what to do with me, so I can’t blame them. Chronic pain isn’t something that gets better. We can hope to feel a little better, given some time and maybe nicer weather. But it’s always there, in the back of your mind: This will come back.

And it has.

After my longest flareup—November 2014 to June 2015—I had a few weeks of general comfort. Sure, my hip still hurt, but my hands and ankles and knees and shoulder blades felt like normal joints. In the last couple of weeks, the pain has crept back in.

I try to fake my way through my days, because I’ve noticed that it makes everyone around me more comfortable. It’s easier for the people in my life when I’m not sobbing in the middle of the night or canceling plans at the last minute. But there’s only so much grinning and bearing you can do, until it all becomes intolerable.

Winter is coming, and with it, that unbearable level of pain. I know not because I am in a negative mood, but because I’ve been living like this for over eight years. I’d just hoped that I’d have a bit longer of a reprieve. But summer doesn’t last forever.

In the throes of this chronic pain, there are four words that I most need to hear, aside from “Your prescription is ready.” They are: “I’m here for you.”

No words have ever been so sweet.

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