My Own Health on a Rapid Downward Tailspin Archives

ICU Stay and Dancing With Sepsis

Jan 1, 2023

It took a few days for the fog in my head to clear.. When it finally did, I realized that I was in the ICU. Once I figure out where I was, I couldn’t remember what had happened to land me there. It took a couple more hours to piece things back together in my misty brain. I had gone from having some aching in my suprapubic area to full-blown sepsis. This had happened over the course of less than 24 hours. The day I went to the hospital, I made it halfway through the day. Then suddenly I felt like I was in Antarctica. The chills were so bad that they invaded even the marrow of my bones. In the middle of an online monopoly I terrified Jeff by passing out. He had no choice but to call 911.

Trauma Room Drama

Dec 22, 2022

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.

Dying is Too Scary

Dec 10, 2022

UTIs have to be the worst kind of torture imaginable. They make you feel like you are dying when they go septic. At that point, you really are dying.

In October 2016, I woke up one morning and felt like my whole bladder was throbbing and aching. I also felt like I needed to empty my bladder. It was only 5 AM, Jeff was still sleeping at his apartment, and it was way too early for Melody or Lauren to be there. Luckily they always left a basin full of packaged clean catheters on my bedside table, and a basin to put the bags of pee that disconnected from the straight catheters as well as the used catheters there as well.

When I tried to self-cath, it burned so badly that I almost screamed and only about 25 ml came out. Ten minutes later I felt like I had to pee again. Again, only about 25 ml came out. At that point, the pain was already so bad that I felt like I was dying and I hadn’t even hit the worst of it yet.

A Septic UTI and a Concerned Jeff

Dec 2, 2022

Septic Urinary Tract Infections or Septic UTIs are not fun for everyone. Most people will get a couple of UTIs over their lifespan. I however am a catheter user, which means I get a UTI almost once every two months. Often times they go septic and spread to my bloodstream, becoming a life-threatening medical emergency. A septic UTI goes beyond what most normal people experience, they are excruciatingly painful, like being stabbed up the urethra by a knife, and they cause high fevers. If not treated rapidly enough they become lethal.

I never know when I am going to get one either. Back in October of 2016, Jeff and I were just going about our normal routine.

In Love With Jeff

Nov 26, 2022

“I am head over heels in love with you,” Jeff would call to tell me every morning around 6:30 AM, “Oh are you awake?”

“I’m awake now,” I would tell him, “and I am so in love with you my heart is swollen to the size of a beach ball.”

It was all part of our morning routine.

“Did you take your Lactulose or your morning meds yet?” I would ask him

“No, I forgot, I’ll take them right now,” he would tell me. On the other end of the phone, I would hear rustling noises. Jeff was grabbing the lactulose and then opening his mini-fridge where he kept the Coca-Cola. He used Coca-Cola as a chaser for his nasty tasting Lactulose that he hated so much. I could hear gulping noises, then a disgusted noise followed by a desperate chugging of Coca-Cola.

After that, I heard the rattling of pills and more swallowing noises.

Autonomic SFN – Small Fiber Neuropathy and Me

Nov 21, 2022

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.

Dysautonomia and Running Out of Options

Nov 16, 2022

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.

Unstable Vital Signs

Nov 12, 2022

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.

Medical PTSD

Nov 7, 2022

I was in and out the whole ride to the hospital. Vaguely, I remember the EMT in back with me placing an oxygen mask over my face and calling in report. Some parts of the report stuck with me, like when he said I was” alert and oriented”. I could barely catch their words because I couldn’t stay conscious the whole ride down there. Another part I caught was when he said my heart rate which was around 165 was my baseline. He claimed that my oxygen levels were 95% on room air, but I was on 3 L of oxygen. Then he ended the report by stating that I was well-known to their facility. My medical PTSD began revving up at this point.

Grand Mal Seizure

Oct 30, 2022

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.

My Own Health on a Rapid Downward Tailspin