When I left the eye doctor, I was in tears. I couldn’t see out of my right eye. I knew it was neurological, but I didn’t know what was wrong with me. The eye doctor told me to go to urgent care for a neurological exam, steroids, and an MRI. I was panicking, imagining the worst case scenarios. What if I couldn’t ever see out of my right eye? Would I have to quit my job? How would I pay my bills? What if it’s a brain tumor? What if I die?
I got in my car and took deep breathes. “Calm down,” I told myself. I needed to go to urgent care, I needed steroids and an MRI, and I needed to calm down.
As soon as I got to urgent care, they took me into a private room and put an IV in my arm. I’d never taken steroids. I had assumed they would give me pills; I was not expecting an IV. The only time I’d had an IV was when my son was born, and it had been my least favorite part of his birth. For the entire 24-plus hours I was in labor and delivery, my hand stung where the IV was inserted and my arm burned from the liquids running through my vein. The steroids that I needed to help get my vision back were strong and had to be administered by an hour-long intravenous drip every day, for five days. I looked away and took a deep breath as the nurse inserted the IV into my arm.
A doctor came in right after she inserted the IV. I thought the “neurological exam” would be… well, I don’t know. But, I was expecting something more technical and in-depth than the one minute cursory check to rule out a stroke that I got. He had me track his finger with my eyes, asked me to push against his hands with my arms and feet, checked my grip, and made sure I had feeling on both sides of my face, arms, and legs. That was it.
He explained what would happen next, when and where I needed to go for the rest of my infusions, the MRI, what optic neuritis was, and how the steroids would help. I listened. I was no longer shaking or crying or scared. I felt numb. I wanted answers, and there were none. But, I had a plan and, right now, all I could do was take the medicine, get the tests, and wait.
The nurse drew several vials of blood for tests the doctor had ordered and started the IV drip. She turned down lights and asked if I wanted a blanket. Yes, please. I am always cold. Ask my family. I’m the one in a sweatshirt, under a blanket, holding a hot coffee, and shivering, while everyone else is saying it’s hot. She left. I tried to text my family updates, but there was no cell service. I was worried they would be worried, not hearing from me. I hit resend several times on each message and then gave up. The nurse never came back with a blanket and I was getting cold with my arms bare for the IV. I was tense, a combination of nerves and trying to get warm, and later, because I had to pee. I looked around the room, opening and closing each eye, testing my vision. I tried to sleep, but I couldn’t. I listened to the sounds of the IV dripping and nurses coming and going down the hall.
That night I was exhausted, but could not sleep. They kept the IV in my arm to use again the next day. It was wrapped in bandages and it itched. My son sleeps with me and I regularly get hit and kicked, and always pushed to the edge of the bed as he snuggles his body closer and closer to me all night. I tried to find positions to lay where I was not pressing against the IV, and where my son could not accidentally bump into it. Inevitably, the IV would get bumped. Between the IV in my arm getting bumped, the itchy bandages, the awkward sleeping positions, and my racing mind, I did not sleep. In hindsight, I should have just had them take it out each day and reinsert a new one for each infusion. The constant discomfort of the IV in my arm was more annoying than the momentary pain of inserting it each day.
For the next four days, I downloaded an audio book, brought ear buds, drank plenty of water, and went to the bathroom before my appointments. And, I made sure they always brought me one of those heated blankets.
I had different nurses every day. Some were meticulous, organized, inserted the IV with ease, wrapped it comfortably, and remembered my blanket. Others did not. I quickly became an expert on proper IV protocol and kept a silent scorecard of their performance in my head. There was one day when the IV wasn’t in properly (the one I slept in) and it burned for the whole hour. Another time, a nurse had to attempt the IV three times. First she tried to flush fluid through the one already in my arm, but it burned and wasn’t working. She inserted a new one, which hurt, and didn’t work. And, then, she had to insert a third, which also hurt. This was the most painful day, and the only time a nurse had trouble getting an IV in my arm. The same nurse forgot to take my vitals and seemed careless overall. I was irritated. But, for the most part, the infusions were not a big deal. A painful poke when it went in, and then just sitting still, closing my eyes, and listening to an audio book under a warm blanket. It was actually kind of relaxing for a single mom working from home with a seven year old boy who is doing virtual school during a pandemic.
They tell you that the steroids might make you really hungry, gain weight, have trouble sleeping, and be emotional. I am a person who cries at moves, TV shows, commercials, Facebook ads. I recall once, right after my son was born, sobbing at the table, snot dripping down my face for no reason. So, I expected to cry. A lot. I warned my son. But, I didn’t cry. Not once. I did get grumpy and short-tempered once I switched to the pills. But, mostly, I was tired. Exhausted. I would get the steroids and then I would lay down or sit in a massage chair, unable to move for the rest of the day, like my body weighed a thousand pounds and I could not possibly lift an arm or leg. I would go to bed early, still exhausted, but my mind would race and keep me up for hours. I listened to sleep meditation podcasts, which helped me fall asleep, but at 3 a.m. I would be wide awake again.
I was not hungry. I was nauseous. And, everything tasted bad. The steroids caused a weird metallic taste in my mouth. One day, my mom treated me to Starbucks. I got a pumpkin scone and coffee. But, they tasted weird. Gross. I texted her. Did hers taste weird? Nope. It was me. I threw out the coffee. I think I threw out a couple coffees that week. And, if you know me, you know that there is something seriously wrong with me if I’m throwing out coffee.
The steroids just made me feel awful all the time. Like the flu, kind of. Except, around the 23-hour mark, right before my next infusion was due, I would get this intense, overwhelming explosion of energy. It felt like I was on crack. Or meth. Or something. I would start talking faster and faster, and sillier and sillier. I would get jittery, shaking and bouncing. It was so overwhelming, I would run in place in my living room to try to release the energy surging through my body. My son thought this was hilarious. I wondered if it was withdrawals.
I did five days of infusions and then two weeks of tapering off with pills. I felt bad the whole time.
The steroids were not a cure. My vision loss was due to an inflammation of my optic nerve (optic neuritis). The doctors told me that my vision would improve with or without the steroids, maybe completely, maybe not. The steroids wouldn’t change that. But, they would speed up the recovery.
The question was, what caused the optic neuritis in the first place?