The day after the LP, I skipped my classes and got the second dose of steroids. I hadn’t seen any improvements yet. The next day was Friday. I went to lab in spite of my backache, splitting headache, and lousy vision. I didn’t feel great but was already starting to get behind in school. I needed to go, and fortunately it turned out to be an easy day with no compounding and standing on my feet.
After lab, I changed into casual clothes. I bumped into a friend in the lounge, and we went to grab a bite. I quickly caught her up on what was going on. We had a few good laughs over lunch, even though they were at my expense. I told her about the 2 Bettas I’d managed to kill. These fish were supposed to be resilient, but one by one were whittled down by my ineptitude. When we finished eating, she walked with me to the neurology clinic for the third and final infusion and even offered to stay with me. I thanked her for being sweet and sent her on her way. I don’t know if she’s reading this, but I hope she knows how much I appreciated her that day.
In the infusion room, there was an older, petite lady in the chair next to me. When I sat down, she glanced up and smiled hello. She was quietly watching a soap opera on the little television hanging on the wall in front of us. I got comfortable in my chair and closed my eyes while the nurse started the IV. I whispered something about being such a wimp. She said, “I’m a wimp too. I can’t stand to watch the needle go in.” I said, “Glad I’m not the only one.”
At some point while I was still hooked up to my IV, the lady next to me finished with hers. The nurse rolled in a wheelchair and propped up the infusion chair. The lady leaned forward and tried to stand. She couldn’t. She lifted one leg at a time with both hands and dropped it back on the floor mumbling “wake up.” The nurse had to pick her up and help her turn around to sit in the wheelchair. The lady couldn’t find the strength to do it herself. She seemed ashamed and embarrassed. I wanted to hug her and ask her what was wrong. I didn’t. I couldn’t get up from the chair, and besides, I knew what she might say.
I left the clinic tired and relieved that I’d finished the infusions. Between those and the blood draws, my arms were running out of pleasant places to have the needle inserted. Nevertheless, I remained in a good mood and slowly walked to the bus stop. I distinctly remember tripping over a little curb next to the bus shelter. I had no depth perception at all. I didn’t know it was there until my toes hit it. At least I managed to stay vertical. I’m sure I must have performed that indignant, cursory look-around that people do when they trip. Waiting for the bus, I laughed at myself. I’ve always been clumsy enough without neurological deficits… Eventually my bus came, and I headed home for the weekend.
I woke up Saturday morning and wondered if I’d been hit by a train. Not a Thomas the Tank Engine train either. I’d had a cough and cold that my son had lovingly passed to me on top of everything else, but I thought that had gotten better. My brain screamed at me each time I sat up, walked, moved…etc. I started chugging water and coffee. Most of that day I spent on my sofa watching videos of missed classes or rather listening. I had postponed a pharmacotherapy exam thanks to yet another understanding teacher. I needed to study for that and catch up on the classes. I wanted to take it as soon as possible; I was falling behind more with each day. I hoped by Monday that I’d be mostly recovered from the LP and ready to jump back in.
That night, as I was lying on the sofa, every fifth breath sounded with a wheeze or gurgle. What’s wrong with me now? Do I have pneumonia? I’m 36, why is my body falling apart? I could hardly stand, my back and chest ached, my neck strained to hold up my head… I wanted to curl up in a hole and die. My husband asked what was the matter and the best explanation I could come up with was “something feels wrong.” I went to bed fairly early hoping that rest would do me some good.
Sunday morning, I felt worse. The ER was in my near future. I forced myself into the shower. My extremities were weak and tingly, and there was a shooting pain down my right leg that came and went. I got dressed, and my husband and son dropped me off at the hospital. And once again, my parents would come to the rescue.
Let me tell you, it nearly gave me whiplash how quickly they got me to an exam room. When you say you’ve had an LP recently and are not doing well, people react. I should’ve requested a wheelchair for the journey to the exam room because my legs wanted to quit on me. Every step required serious focus. My paranoia and lunacy prompted me to check my trail for dropped belongings. My spinal cord for instance.
The physician came in with a mask. I had noted that I was having some difficulty breathing to the nurse and that my son had given me a chest cold. He asked a bunch of questions and ordered a flu test, a chest x-ray, and a neurology consult. There would be a lot of waiting, but fortunately my mom came to stay with me.
The nurse came in to do the flu test. I’d never had one. She pulled out the swab, and I asked her, “where are you going to put that?!?” I’m such a wimp. The process of sticking it up my nose went fast, but I swear I smelled the chemicals from it for days. I’m still wondering if that was a disguised lobotomy.
To get the x-ray, the orderly pushed me there in a wheelchair. When we got to radiology, the guy parked me in the barren hall next to the wall and told me to wait right there. Um, okay. I sat right across from an open door where the technicians were gathered chatting and laughing and casting me the occasional annoyed glance. I wrung my brain for a couple of minutes wondering what an assertive person would do, and how I could myself become one at that very moment. Alas, like Popeye, I am what I am. I sat obediently: a sheep innocently waiting for the slaughter.
The x-ray didn’t take long, and I got wheeled back to the ER. The neurologist showed up and did a brief exam. The results of the LP weren’t in yet. She asked me what was going on and said I’d need a lumbar MRI. Great. My new favorite weekend activity.
This MRI wasn’t nearly as traumatic. Perhaps it was having already experienced one, but probably because it was shorter and less coffin-like. I went in feet-first, my head was at the end of the tunnel instead of the middle, and the technician gave me a washcloth to lay over my eyes instead of a cage. On the way into the room with the dreaded machine, I’d seen the man that took care of me for the brain MRI. We made eye contact, and I could tell he recognized me. His eyes spoke and said, “You’re back. I’m sorry. You look like refuse.”
Back to the ER again to wait for the results. The doctor, mask-less this time, entered my room. My flu test – negative. My chest x-ray – clean. My spinal cord – intact. He handed me a sheet of paper explaining myalgias. The paper told me to rest, take Advil or Tylenol for pain, and schedule a follow-up with my primary care provider that week.
It’s unsettling when you’re standing with toes dangling off that precipice, peering into uncertainty, scared that the slightest breeze will send you flying, and the great golden goose gives you nothing but a handful of molted feathers and a nudge.