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The Most Dangerous Place for Me as a CRPS Patient

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What is the most dangerous place you’ve ever been to? Maybe you don’t have an answer to that. I’ll rephrase… what’s the scariest place you’ve ever been? The place where your heart wouldn’t stop racing, your head was pounding, your breath came in rapid bursts, you could feel the adrenaline rushing throughout your body, and you felt like you’d never be calm again. Was it a haunted house, or another place where you weren’t in actual danger, but the surroundings were visceral enough to create the illusion for you? Was it a disaster zone or actual traumatic event that you survived?

My scariest and most dangerous place is a common place, not usually thought of being scary or unsafe. It’s the recovery room at the hospital, the place where patients go in between procedures and being returned to their safety of their loved ones.

You might be tempted to think, Wait… a hospital is this writer’s most dangerous place to be? Hospitals are safe. Hospitals are where you get helped…

Unless you have a rare chronic illness. Unless you have complex regional pain syndrome. Then they can be extremely dangerous.

Complex regional pain syndrome, CRPS, is a pain condition in which the body overproduces adrenaline, causing extreme pain levels and nerves to misfire. There is no cure. Over time this overproduction of adrenaline eats away at bones, muscles and nerves. This causes severe nerve damage, leading the nerves to constantly send incorrect signals of pain. My brain tells me that every incoming stimuli is a pain signal. Everything hurts me. When you get a pain signal, the body’s natural response is to produce adrenaline because it thinks the body is danger, and adrenaline helps you survive. But in my case, this just makes the pain worse and causes a never ending cycle of pain.

I live at a very high level of pain every day, which gives me a high pain tolerance. But the nature of CRPS means I have a very low pain threshold. Something as small as a paper cut feels like a sword wound, a t-shirt that isn’t the right level of softness can feel like I’m wearing a burlap sack, the right frequency of sound causes me to black out, and my entire body constantly feels as if it is trapped in a boiling hot tub.

When someone has a medical procedure, let’s say surgery for instance, they are given  general anesthesia which makes you very groggy. The initial recovery area is where the nurses wait for you to come out of the anesthesia, ask you basic questions to check cognitive function, and do a few things to prepare you for being wheeled into your secondary recovery room where they allow your loved ones to rejoin you. The average healthy person gets to slowly open their eyes, become aware of their surroundings with a steady heart rate, slur their words to the kind nurses attending to them, perhaps doze in and out of consciousness, and are able to politely request more medication if needed. Overall, they feel safe and calm.

At least I imagine that is what it is supposed to be like.

When I first open my eyes after anesthesia, my heart starts racing. Immediately I feel pressured to analyze my surroundings and what each nurse around me is trying to do. I fight the urge to sit up and run. I struggle to give my nurses the key points of my condition, and fervently hope they take me seriously. They hustle about me, touching and prodding me without asking how they should do it, and blundering into triggering massive pain flare-ups which cause me to swear like a sailor. Often they scold me for swearing and tell me what they’re doing isn’t painful. Except that it is. Except that when you have CRPS, a damn hug is painful. The blood rushes to my head, my fight or flight mode gets kicked into overdrive, causing an adrenaline episode (similar to an anxiety attack), my heart races, my pain level soars, and I know I’m in terrible danger if I can’t find a way to convey the importance of handling me with care.

While other patients have the luxury of slurring their words, saying the wrong thing, and it all being a funny joke the nurses laugh about later, I have to be cognitively able the second I wake up, because if I’m not, the risk of the nurses doing something to aggravate my condition is overwhelmingly high. No one ever reads my chart or passes on to future nurses that I have different needs. That job is left to me before procedures and immediately after. At a time when I should be coming to slowly, I’m left to fight for my life and all too often ignored by ignorant nurses who can’t seem to stop long enough to care about what I have to say. Why should the nurses listen to the drugged up patient anyway, right?

I have handouts with condensed information for nurses and doctors to read, but they either refuse to or only glance at it. Even if the first round of nurses read it and understood it or listened to me, it rarely means that the next shift was informed or will be willing to listen to me. Going into the hospital is equivalent to walking into a field of landmines for me and many others with CRPS. Except we’re trying to stand in the safe zones, while the staff is blundering around without paying attention to our markers, and end up getting us blown to pieces.

During my last medical procedure, I was not shown compassion. I was mishandled, teased, challenged, ignored, and thrown into massive pain and adrenaline episodes on multiple occasions prior to my procedure, during it and in the dreaded recovery room.

One nurse joked about how if I lived at an 8 out of 10 and felt 10s frequently, then the pain really couldn’t be all that bad or get any worse.

Incompetent techs decided that if my jaw wouldn’t open naturally, they should pry on me as hard as they could and only stop once they worried about chipping my teeth. No one bothered to pause things to go ask my husband why it was so hard to open my mouth, or even call my doctor when they encountered this problem — a mistake that cost me two months of recovery time to return to normal jaw function.

In the recovery room, a nurse told me I had no right to say how much pain I was in, because nothing she was doing could possibly be painful, as she ripped cords and sticky tabs off me, and because she had so graciously given me a 5 mg tablet of oxycodone 10 minutes earlier. If she had read my chart she’d have seen that’s what I take for home care, and would’ve known my body is very tolerant to it.

That same nurse told me that I had no right to swear in pain because there were children nearby. She apparently cared more about them learning bad language than me being in pain.

When I said I needed my service dog to help with my adrenaline episode, another nurse laughed and said, “I wish I was lucky enough to be able to have my dog with me everywhere.” While my arms are going numb and paralyzed, I can barely breathe, my heart feels like it will explode out of my chest, I feel like I’m on fire, and all of my neurons are firing like they would for someone in a war zone. Yep… lucky.

I went in for a jaw MRI with general anesthesia. It should have taken two weeks at most to recover from, and instead it took two months. That’s longer than it takes me to recover from root canals (usually a month).

This is one example, but every time I have had a procedure at the hospital, it doesn’t seem to matter what hospital, I never feel safe. I never feel cared for or listened to or respected. Every time, I fear for my life. I fear that one day someone will make a mistake I won’t catch or won’t be aware of and it will seriously hurt me. Time and time again, complete strangers who devoted their lives to helping people have proven to me that they do not care about my safety and well-being as a person with chronic pain. My regular doctors even agree with me that the hospital and the recovery area in particular are my most dangerous places.

This is my reality. Recovery rooms are extremely dangerous. My brain accepts pain as normal. And I have to be able to jump from a sleepy anesthetic state into hyper vigilance in a matter of seconds.

The recovery area is my most dangerous place, because I have the least control over my own body, my body can’t interpret normal stimuli correctly, and I’m surrounded by people who far too often don’t care to understand CRPS.

Originally published: December 19, 2018
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