My Infusion Encounters By Katy, Wife, Writer, and Yoga Instructor • December 14, 2016
Over the years I had grown accustomed to the injection drill. Premedicate by taking an anti-inflammatory medication. Pinch a portion of flesh on the back of my thigh, and pow! Injection done.
This pattern persisted for years, and I had come to accept it as simply a part of life, an uncomfortable yet vital chore that would help me in terms of my relapsing MS.
When I started experiencing new symptoms, it became clear that my MS was not responding to my medication. I began to wistfully wonder what other types of treatments were on the horizon. Would a pill be powerful enough to manage my relapsing MS? Or perhaps a regular shot was the answer…
After weighing the risks and the benefits of LEMTRADA, my neurologist and I decided that the infusions were worth a shot. (Get the joke?) It sounded promising and I wouldn’t have to inject myself anymore.
The first round of infusions was scheduled for 5 days during the late summer season in my neurologist’s office—about 3 hours from my home. My husband, Joe, and I checked into a hotel the night before the infusions began and arrived early the next morning to begin my first day of treatment.
And we came prepared. Joe brought his bike so he could get his exercise in while I spent my time getting the IV drip. I lugged a stack of magazines, DVDs, and books in with me, plus a cuddly blanket to stay cozy in the sterile infusion room.
A friendly team of nurses welcomed us to the center at about 7 a.m. that morning and explained how the whole shindig would work. About an hour of IV steroids, several hours receiving my infusions, and then some time at the end of the day when I would simply sit and wait to see if any negative side effects occurred, such as allergic reactions.
Lather, rinse, repeat. The experience would be the same for 5 consecutive days, which lay before me looking like an eternity of repetitive and uncomfortable experimentation. But I must admit, the week also had an air of adventure about it.
Part of me was looking forward to snuggling in, getting the medicine I needed, and learning more about the revolving cast of characters that I met each morning. There were about 6 of us receiving some type of treatment in the same infusion room on any given day. Almost all of us were receiving different medicines and we all had very different stories.
The first woman I met was there with her husband. They were in their mid-50s and had a wonderful shared sense of humor. She had lived with MS for many years, and he was devoted to spending every waking moment with her. We traded stories, talked politics, and laughed a lot. The pair left earlier than I did, and my husband went to ride his bike, so I slept for the rest of the day and tucked into bed early that evening.
Day 2 was equally entertaining. There was a woman, probably about 40 years old, who stomped into the infusion room shortly after I did. She was wearing dark sunglasses and reeked of cigarettes. Her mother was with her, listening to her complain about everything from how she hadn’t become a wonderful artist to her annoyance that she couldn’t get the prescriptions she needed or smoke while she was getting her infusion—a shining example of who NOT to be when faced with a challenge.
“You seem very concerned about your health,” I said to her, unable to stay quiet as I listened to her drone on. “I’m a little confused about why you want to make yourself even sicker.”
I didn’t receive much of a response.
By Day 3, I considered myself a pro at knowing what to expect from my infusions (I experienced some side effects, like exhaustion, and slight swelling and tenderness in my gums for a few days after I got home) and I also knew to expect encounters with unpredictable company throughout the day. The first woman I met on that Wednesday morning shifted my perspective into a new direction. She was in a chair, unable to use her arms or her legs, and she was blind, as well. But not once did I hear her complain. She smiled and laughed and made everyone around her feel comforted and cared about, inspiring each person to be confident and kind.
That was the morning when I noticed the stark contrast among the choices that different individuals make about how they will approach their lives. That choice is the one thing we all have control over. And it’s a choice that we all have every moment of every day living with this disease. Whatever your diagnosis may be, you have the opportunity to accept it and embrace your condition as an opportunity to grow. Infusions of LEMTRADA may do what they can to help slow disability progression, but it’s up to us to strengthen our spirits. We’ve got this.
- CLINICAL TRIALS
- YEAR 1
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