I’m allergic to pain

For the last two weeks, while waiting for kidney surgery, I’ve been stuck in a lose-lose situation. I’m allergic to pain and I’m allergic to my pain pills.

When I say “I’m allergic to pain,” almost no one takes me seriously. After all, isn’t everybody averse to pain? I have to explain to my nurses that pain can trigger my mast cells to release loads of chemicals and cause severe, sometimes life-threatening, reactions. When severe pain strikes, my whole body swells and burns. In other words, adequate pain management is essential to avoid MCAS complications.

So pain pills seem like an easy answer, right? Wrong. Mast cells generally hate pain medication. I am one of the lucky few that can tolerate NSAIDs and some opioids. However, this week I wasn’t so lucky.

An ER doctor prescribed me a new narcotic to manage the kidney stone pain. I was both grateful and reluctant. I am always scared to take a new medication, but the only path to relief is trial and error. My reluctance was validated 24 hours after taking the first dose with a severe, two-day MCAS reaction.

My reactions to medications are distinct from other MCAS reactions. In addition to typical symptoms, a migraine with aura renders me bed bound for 1-2 days as the medication leaves my body. I take the maximize amount of Benadryl in order to keep food, fluids, and medication down.

So basically, I traded my pain for vertigo and vision loss. I think I prefer pain after realizing how heavily I rely on screens for comfort. Social media is a great source of support, but in this instance, it was also my enemy. I also tried blogging, but only managed a few desperate sentences before I vomited and proclaimed my life was over. The future seems bleak in an MCAS flare.

Despite knowledge and planning, I often feel like I can’t win at all with MCAS. Sometimes this disease is overwhelmingly unfair. But this too will pass, right? Like a 7mm, laser-blasted kidney stone, right?

A tale of two kidneys

You know how in movies sometimes a devil and angel sit on the protagonist’s shoulders? I, too, have good and evil tempting me these days. Except my devil and angel are my kidneys.

My bad kidney, the one that hoards stones, chides me every waking hour, “You can’t work; you’re in pain. Go back to bed and never drink water again.”

Good Kidney reassures me, “Don’t worry, you still have me.”

I tell Good Kidney that doesn’t really help the pain. Or the fact that I need surgery and a stent shoved up my pee hole.

Good Kidney retorts, “At least, you don’t have a penis.”

I can’t argue with that. So, I carry on and I ignore Bad Kidney.

However, on Monday, Good Kidney suddenly whimpered, “I don’t feel so good. We should go to the ER.”

I considered ignoring both kidneys, but the internet told me that doesn’t usually turn out well. By the time I got to the ER, Good Kidney was crying, Bad Kidney was screaming, and I was asking for a wheelchair.

The nurse offered pain medication, and I initially refused for fear of a mast cell reaction. However, Bad Kidney was insistent, “Pain meds! Pain meds! Now, now, now!”

So the nurse came back with Diluadid. I’ve had it before, also for kidney stones, but I couldn’t remember how it felt. (That’s probably because I was passing a 5mm stone and blacked out.) As soon as the nurse pushed the medicine, pressure rushed through my body, filling me like an overinflated balloon.

I braced for anaphylaxis, certain my mast cells had been activated. Nothing. I am led to believe my mast cells are Team Bad Kidney.

I tried to relax, despite the overwhelming desire to burst out of my skin. I took a deep breath. I wondered if this is how gingerbread men feel when they are cut with a cookie cutter? Do they mourn their leftover body on the cookie sheet?

Are we all one big cookie?

The medication wasn’t worth the hangover. I could still feel Bad Kidney, although it was more tolerable. The doctor recommended surgery sooner. Feeling defeated, I left the ER, made cookies (?!), and went to bed.