Only those who have hit rock bottom have the capacity to experience pure joy.
Posts by Becca Pava
About Becca Pava
Becca Pava is a freelance author as well as a professional patient with a terminal illness. She has been sick since the age of eight and her condition was deemed terminal about 8 months ago, That has not slowed her down one bit,
In 2016 she graduated from Elms College Summa Cum Ladue with a BA in writing and a GPA of 3.98. and so far she has published multiple literary journal articles, and blogs online for a company called Verblio, and writes for TemplesHub, a company developing an app to increase overall wellness. she has also written two full-length young adult novels and has a third one on the way.
When not writing, Becca enjoys reading and playing with her build-a-bears, mini brands, and dollhouse.
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.
“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 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.
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.
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.
When you live with a chronic life-threatening, life-limiting illness, you have to pick up some mindfulness coping skills. You have to figure out how to mentally deal with the fact that your days on earth are numbered and you will face debilitating pain on an hourly basis. If you don’t have mindfulness coping skills for that you will spend the rest of your life miserable.
While Jeff’s health continued to stabilize, I continued my constant battle against my own health issues. I had a particular thorny battle with my small fiber autonomic polyneuropathy when it flared up out of nowhere. I dropped my blood pressure into the 60s over 30s, and spiked my heart rate sky high. Originally I was conscious in the ER and assumed I just had low potassium again. Then I passed out and woke up on life support three days later.
Chronic illness is a vicious monster. Jeff and I knew this all too well. Jeff is the man I met at Side by Side Assisted Living., My home since age 24.. As soon as I h laid eyes on him I immediately felt a deep emotional and physical connection with him. Eventually, with some coaching from my caregiver Melody, I had asked him out. He was now my life partner.
But, while my health was going downhill fast, Jeff’s, at least, was on the upswing
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