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
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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