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.
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.
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.
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.
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.
Maybe if the hospitalizations in the month of November had stopped there then things would have been okay, but life with major medical diagnoses is never that easy. First I went to the hospital for dehydration, Immediately after that bloodwork showed that my potassium was dangerously low. I had to rush back to the hospital.
I had barely finished the IV antibiotics for the UTI when I started to feel really dizzy and lightheaded all the time. I would never in a million years have connected feeling dizzy and lightheaded with my g-tube drainage bag
“Your lips look so dry,” Jeff kept telling me, “Do you need Chapstick?”
“I’ve been putting tons of it on,” I told him, showing him the Chapstick I carried in the purse that I kept clipped to the arm of my wheelchair.
During the first week of November, I started having that familiar urinary urgency and pain. I was attempting to catheterize myself constantly. Each time I catheterized all I got out was a few dribbles. Really, my bladder was empty, but I was having spasms. The spasms were making me feel like I had to pee so badly. Right off the bat, I knew I had yet another UTI.
I was closing in on my first year spent at Side by Side Assisted Living. I was also only 26 years old. As bad as that sounds, it was one of the best years of my life. From my very first tour there, I knew I was going to love it there. The assisted living ad rescued me. Before moving into assisted living I’d been at a nursing home. I suffer from a disease called autonomic small-fiber neuropathy. A disease that has stolen my childhood and adolescence from me.
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