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Lying on a stretcher in the trauma room, I was surrounded by a mass of controlled chaos. I couldn’t believe how quickly my day had gone downhill. My body was wracked with chills, and I was unable to stop my teeth from chattering. Even though I had my Hello Kitty comforter with me.

“Can I have a heated blanket or at least another thick blanket?” I asked.

“Are you kidding?” One of the trauma room nurses asked me. “Your temperature is 105.5 and climbing, we may have to pack you with ice packs to get this fever down.

That thought horrified me. I felt like I was in Antarctica with just a bathing suit on. It felt like I had gone swimming in the frigid ocean waters in that bathing suit. Somehow the ice-cold Antarctica waters were getting inside my bones and organs.

Autonomic Small Fiber Neuropathy is also known for short as Autonomic SFN. It’s a shut down of the unconscious nervous system combined with body-wide neuropathy. Eventually, your whole organ system shuts down. I’ve been struggling with autonomic SFN since I was eight years old. At age 26 my tests started coming back showing that I had the most severe form of it possible. This meant I was in the end stages of it.

In the last few days, my body had taken a beating

First, there had been all the trauma of feeling so sick and almost dying. Then there was the further drama of being suddenly kicked out of Berkshire Medical Center. After that, there had been the hour-long drive to Baystate Medical Center. During the drive, I had to force myself to keep talking to Melody. I was being pulled toward the sleepy abyss of Autonomic SFN. My fear was that if I let go and spun into it, I would never return.

It was like deja vu when EMS raced me back into one of the critical care rooms as soon as the ambulance pulled up at Berkshire Medical Center’s ER. It was the night my dysautonomia had flared up without warning and I had woken up at 2 AM with a heart rate of 178 and an oxygen level of 86%.

The room was already filled with people as EMS used the sheets, already underneath me from my bed at home, to slide me over to the gurney in the trauma room. Even though I was on my baseline of 3 L of oxygen, on the ambulance ride to the hospital my oxygen saturation steadily dropped. This was even after they turned me up to 4 L.

My life has never been what you would call easy or straightforward.  Every day was a struggle to survive despite unstable vital signs. Doctors unfamiliar with Small Fiber Autonomic Polyneuropathy had no idea how to treat me. Over the last few years, I had been losing more and more mobility. At this point, I was wheelchair-bound. I needed one or two people to help me stand and pivot to transfer in and out of my wheelchair.,

Because of my gastroparesis, I couldn’t eat anything by mouth and survived on tube feeds 24/7. I also had a special tube that drained out the contents of my stomach: bile, air, and sugar-free clear liquids. which were the only things I was allowed to take in by mouth.

Once I got home from my third hospital stay in October, I was looking forward to Halloween. I had a Minnie Mouse costume and was planning on going trick or treating with her kids. It seemed like things were going according to plans. There were no thoughts of grand mal seizures in my head the morning of October 31st, 2016.