Storytime Sunday: Goddammit to Me

Have you ever really been far even as decided to use even go want to do look more like? I have. This is the story of when I was.

It was 2003. RSD was my life at this point. It seemed to stretch back forever and it would surely continue forever. Mom had set me up in a little rented back house in a simulacrum of independence at least. The pain had gotten a little better with my spinal cord stimulator implant, and with new medications, but it was still pretty bad.

We'd fired the doctors at Stanford after being frustrated for too long with their inflexibility and purely "do as I say" authoritarian way of doing business. We found a new anesthesiologist/neurosurgeon who had RSD himself and was an all-around cool guy. And we found a pharmacologist who specialized in pain management to handle my medication.

Now, one weird thing that happens with RSD is that your opioid receptors - the ones that hydrocodone, oxycontin, morphine, etc. bind to - stop working right and those drugs are minimally effective for the pain. So you have to try other things. My new pharmacologist switched me from Neurontin to Gabitril (that's its own story), put me on methadone (it partly gets around the receptor problem) and some other things. But you have to be innovative with this. You have to think outside the box.

He had an outside the box option: ketamine. It's an anesthetic that works directly on pathways the RSD acts on (specifically, NMDA). It was a perfect option. And he had an outside the box delivery mechanism for it: a topical cream. I was a little sketched out by ketamine, but I went with it. We ordered the cream from a compounding pharmacy and I soon got it.

One tablespoon applied to the affected area once per day. Easy enough. Well, maybe a heaping tablespoon - my legs are big. Hey, this stuff works great. I want this to cover my whole legs. A couple tablespoons - it's a cream, it can't be dangerous. 

I started to get extremely sleepy. Head bobble all the time sleepy. After I fell from briefly losing consciousness mid-stride, mom took me back to her place. I slept a lot. But damn if my legs weren't feeling good.

"Moouumm..?" I shambled down the hallway to her room. "Moouumm..?" My brother was staring at me, I think. Mom walked to the front of her room and saw me, pupils blown, bruise forming on my head. "Are you okay," she demanded to know. I just continued shambling toward her bathroom. She probably asked again if I was okay, but I don't really know.

I managed to shamble past her into the shit-'n'-shower, as we called it (the closet-like room with a shower and a toilet right up against it). I saw her holding the external power supply to my SCS; it had apparently been dangling from my ass the whole time.

I reached out my hand. "Goddammit to me," I demanded.

"What?"

"Goddammit to me," a little softer this time.

"Goddamn what?"

"Goddammit to me."

She looked down at the power supply in her hand, and back at me. "Give it to you?"

I nodded. "Goddammit to me."

"No."

"Goddammit to me," I pleaded.

"You're gonna drop it in the toilet."

"Goddammit to me," more politely.

"You're gonna drop it in the toilet."

"Goddammit to me," super politely this time.

"Fine, fine." She handed it to me. I immediately dropped it in the toilet. It cost $8,000 to replace.

I don't remember what happened next, but apparently she called 911. She thought I had a head injury, but no, I just fell out of bed.

Next thing I knew, I was nowhere and formless. There was something sudden and awful, disembodied pain. I imploded, my muscles all spasming shut in an instant. My eyes flew open. I saw things, as in I got the raw sensory input, but nothing made sense. Though in hindsight I know what I saw, at the time, I couldn't identify shapes or colors, let alone objects. It was just raw, terrifying sensory overload.

What I didn't realize was that I was on the nice-living-room (not the one we normally used), on the couch, getting an IV stuck in my arm. This disorienting assault on my senses and my beings may very well have been the most terrifying experience of my life. It was like I had just been born and hadn't yet formed a concept or understanding of anything - not even my body or my senses.

I woke up in the hospital hours later to learn that I'd OD'd on ketamine. Apparently the extra I was applying had built up in my system and I was just on K the whole time until it crossed that threshold.

As a bonus, I found out from my pharmacologist that even with my stupidity, that shouldn't have been nearly enough to OD, only to have a bad time. Turned out my NMDA receptors must have been shot - likely excitotoxicity damage from so much continuous pain for so long literally killing the receptors. Joy.

I tried ketamine in another form after that. Pills. It became my only "as needed" pain relief other than pot. I was scared shitless of it, but when I needed it, it was a godsend. When I was really hurting, goddammit to me.