Page 221 of Toxic Kiss

“Joints.”

“Any particular one?”

Cy pauses, and his brow furrows in concentration.

“It started in my fingers, then my knees. I don’t know…it wasn’t all at once, it progressed.”

Question after question, I type out his answers. Every time I ask one, three more pop into my head. Everything from what other doctors have said to what he is experiencing currently.

I immediately throw out the cocaine use and any addiction symptoms. I’m tired of everyone assuming that’s his problem. Whatever this is started before he ever used hard drugs. I want to come at this from another angle.

Before I know it, Cy is sound asleep and has stopped trembling. Grabbing the blanket, I lay it over him. I go downstairs to pour a fresh cup of coffee, then climb back onto the bed beside him with the computer on my lap. Time to deep dive.

It’s three in the morning when I stumble into a chatroom for people suffering from autoimmune diseases.

Using a fake name, Jen, for anonymity I pretend I’m Cy and explain the daily struggles. Everything from what diagnoses I’ve received from doctors who have no clue. I tell these strangers that none of the medication is working, and I’m only getting worse. By the time I’m done, I’ve written a novel and hit send.

The wait isn’t long. A flurry of activity fills the screen. So many commenters share their experiences of feeling lost and terrified, of doctors handing them meds and moving on because their symptoms aren’t indicative of just one illness. So many heartbreaking stories of people scared to wake up, scared to sleep, scared to eat, travel, or live.

How can there be this many people suffering in silence, begging for help, while no one listens? And then one user sends through a direct message that changes the trajectory of my search.

TryingToGetBy: Hi there, JenHope1. I read what you’re going through, and I’m so sorry. I, too, had many of those symptoms, but my doctor caught that I had Lupus fairly early. I don’t know if that is what you have, but it sure sounds like it to me. I can’t imagine suffering that long and being prescribed all those medications. If you have Lupus, then some of those medications will only exacerbate your pain, not make it better.

My fingers fly across the keyboard.

JenHope1: Can Lupus be misdiagnosed as Schizophrenia?

TryingToGetBy: Yes. It’s not common. But it can happen, usually, if you have neuropsychiatric lupus. It affects your nervous system and causes hallucinations and paranoia. That sort of thing. If those symptoms show up, there is no family history, and you haven’t experienced pain or a butterfly rash, etc.

From my notes, I know Cy says he was extremely moody and paranoid. That’s why he started drinking heavily, partying more, and then moved on to harder drugs.

TryingToGetBy: You mentioned recreational drug use. This can also cause a misdiagnosis, but you’ll want to get tested, of course.

JenHope1: Where can I go to research this more?

TryingToGetBy: I’ll send you the websites. I hope it helps.

My mouth falls slack as I open site after site. It’s a catalog for everything Cy has suffered. Why has no one checked this before?

Rage I’ve never experienced fills me. A fucking blood draw is all it takes. Not one doctor he has seen thought, “Hey, maybe let’s check for these markers just in case.”

What the fuck?

Sleep is an afterthought. I get up, go downstairs to the small home office, and print off everything I can find on Lupus. Treatments, symptoms, medications, I leave no stone unturned. The journey takes me down a rabbit hole of dozens of autoimmune disorders I’ve never heard of before. Each one has stories of individuals who were suffering with a mysterious ailment that doctors misdiagnosed for years. They are left to struggle in the dark, alone, figuring out how to manage symptoms of an illness they have no name for, because what they have isn’t mainstream. My heart breaks.

“What the hell is going on?”

I whip around at the sound of Cy’s voice. He is staring at the kitchen island that I’ve completely covered with my research. It’s chaotic, but I understand the mess.

“What are you doing out of bed?”

He blinks and points at the window.

“It’s ten thirty in the morning. Did you sleep at all?”

Sunlight is streaming in, and I shake my head.

“No. No, I guess not. I couldn’t. I was too focused and didn’t want to stop.”