After we left the neurologist’s office following my diagnosis, my husband and I made calls to our parents. I sat in the car and called my mom; he called his mom while walking around the parking lot (he’s what I call a walker-talker. He paces when on a call and can’t sit in one spot for a phone conversation unless he is trapped in the car.) There was so much information to process and my head was spinning already.
The infusion center was waiting for our arrival, so we left Durham and headed back to the Raleigh office, about a 30-minute drive. It was afternoon by this time, and my infusion was scheduled to take more than an hour, so we stopped to grab some food, once again for him, not me. He can always eat. Bless. I’m pretty sure he knew I wasn’t going to eat because he stopped at a Peruvian restaurant. My husband loves all cuisine, the more authentic and ethnic, the better. Unfortunately, I am the opposite. I order the same generic menu items at restaurants and am hesitant to try new things. (Our first date was no exception. He took me to a Jamaican restaurant and ordered curried goat. He’s lucky I already liked him so much because that was a potential deal-breaker right there). He tried his best to get me to eat something before my infusion, but I just couldn’t even think about food.
On this day, most of my body was still numb and I was in a lot of pain. The “pins and needles” feeling surged throughout my legs and also down my right arm into my hand. I had a throbbing pain that had recently started in my right hip, and I struggled not to limp when first standing after sitting for an extended period of time. Stairs weren’t impossible, but difficult, especially if there were many (like between floors in our house). My legs still felt like I had weights attached to them, and that, along with the numbness, caused me to catch my toes when lifting my feet to each step. I had to concentrate so I wouldn’t fall. Since my symptoms were the result of an MS flare-up, I was prescribed a short course of high-dose corticosteroids to reduce the inflammation and bring the flare-up, or relapse, to an end more quickly. I would need to have the medication delivered via IV infusion therapy in the doctor’s office for three consecutive days.
When we arrived at the office, they took me right away. Since the Covid onset, patients coming for ongoing treatments were no longer allowed a visitor in the infusion room, but my new diagnosis and the unfamiliarity of infusions made it possible for my husband to accompany me this time. Once I was settled in the recliner with the nurse inserting my IV, and during the next hour as the medicine was administered directly into my vein, my husband did what he always does. He cheered me up. He chatted with the nurse and joked with me and the other patients within earshot. He talked about food and ice cream, found out who grew up locally, and looked for connections they might have (and of course, he found some). Our kids always laugh because no matter where we are, if he starts talking, he will end up having some connection with the person. Case in point. He ran into someone on our booze cruise in Cancun, Mexico while on our honeymoon that he attended elementary school with. I believe it’s a testament to how wonderful he is and how people always remember him, even years later. He has a huge heart, a fantastic personality, and is so easy to talk to and laugh with. The laughter is what I love so much, and it has gotten us through some really hard times, especially this last year. I don’t know what I would do without the laughter, or without him. But the kids and I still make fun of him and his “making friends” everywhere we go.
The nurse taking care of me warned that the steroids can cause a metallic taste, so she brought me a small cup of lemon drops. She wasn’t kidding. About 15 minutes into the hour-long infusion, I felt like I had a mouthful of pennies. It was awful. The lemon drops became a staple over the 3-day treatment period and helped alleviate the metal mouth. We left that day hoping the medicine would start working soon and help reduce the inflammation causing me so much discomfort.
Once we arrived back home, I wasn’t sure what to do. I remember sitting in our living room and staring at the television. I have no clue what was on. I had so much going on in my head, and I couldn’t get my thoughts to slow down long enough to process any of it. I spent some time going through the information that was given to me about MS from my doctor’s office and did some research myself. I made sure to stick to the websites suggested by my neurologist for now. Other than our parents, I had only told one friend about what was going on, so I let her know about my diagnosis.
I was exhausted, both mentally and physically. I wanted to be distracted and take a break from it all. Have you ever wanted to not think about something, but it is impossible to escape your thoughts? I wanted to leave worry aside, even for just a few minutes, so I could take a breather. It’s similar to when you wake in the morning, and for a second, you have forgotten whatever is upsetting, worrying, or stressing you out. It’s a wonderful feeling until it all comes rushing back to you, and your ignorance is gone. That’s what I wanted. I wanted to focus on something else for a while and not even think about what had happened, and what ‘might’ happen. I decided to drown myself in work and focus on what needed to be done. Edit documents, proofread text, respond to emails, and return calls. Anything. So, I did just that. I grabbed my laptop and worked the rest of the day. By the time I closed it up, I felt like I accomplished something and that I was needed and not falling apart.
I’m fortunate that I haven’t had to take many steroids in the past. I vividly remember the last time I did, and it wasn’t pretty. Many years ago, while working outside, I decided to wrestle with some poison ivy in our yard. The poison ivy won. I did everything I could to combat the itchy, blistering hives that covered my arms and hands. I googled best remedies, spoke to pharmacists and bought everything I could find for it at the store. No luck. I needed professional help (my husband would agree, but for other reasons). I was prescribed a hefty dose of oral steroids by an urgent care physician. I was thrilled they did the trick and cleared the poison ivy up, but the medicine wasn’t kind to me. I was lightheaded and jittery and had a gigantic appetite. Lights were too bright, and sounds were too loud. I had to leave early one morning during the course of my steroid treatment for an out of state trip. I made the 4-hour drive and arrived to meet up with some of my coworkers. My senses were on overdrive, and I joked with them that I felt like I could actually “see sounds.” I was glad to finally finish the medication because I hated how it made me feel.
By the evening of the first day of steroid infusion treatment for my MS inflammation, the medicine started its evil effects on me. I was restless and couldn’t sleep. The next day I was agitated and couldn’t relax. The nausea kicked in the afternoon after my second treatment and stayed with me for days. It took almost a week to start feeling like my pre-steroid self again, and I was thrilled that by that time my legs were feeling better as well. The “pins and needles” had subsided, and the numbness was starting to disappear in my lower extremities. My right arm and hand were being stubborn and not responding to the steroids, but having half my body feel better was, in my opinion, a win.
By the end of May, we were in a holding pattern. The course of action we had decided on with the neurologist required blood tests to see if I was an eligible candidate for the medication, and I had to be pre-authorized by my insurance company for the drug to be administered. Some of my symptoms continued to improve, and I stayed busy with work. I was fortunate to have a job that allowed me to work remotely. I was able to rest at home while completing my work. No one was the wiser since my job performance wasn’t affected, and I was still meeting deadlines and producing my typical high-quality work. It was a perfect situation. Or so I thought.