I don’t know about you but I was curious what it actually was like to get an infusion. Would it be painful? Uncomfortable? How would my body react? I just finished another infusion on Friday and I have to say that at first it seems scary and intimidating but just like anything else, it becomes a part of your routine. You get numb to the idea that there’s anything strange about an aggressive medication routinely going into you and it all just becomes part of your new normal.
Friday’s are my infusions days and I head over to Rush University Medical Center first thing in the morning. It takes a few hours so I choose to start early so I can spend the rest of the day with my daughter. The routine is always the same: you take a mandated pregnancy test first (clearly not medication for a baby!), and then get your vitals and temperature taken. Then, you’re given an IV to start the process. You’re actually not allowed to begin the infusion until at least one doctor is in the office in case of a reaction or emergency. The medication is given for about 1 – 1 1/2 hours, and then you’re required to be monitored for 1 hour since reactions are common.
The first time I did it I wanted Bill to be with me so he arranged to come along. However, I didn’t realize that it was a quarantined space and only those getting the treatment and nurses could be there. Apparently there are also privacy laws that also need to be abided.
The room is pretty stark and cold and includes several big chairs for patients getting infusions. At any given time you’re surrounded by up to 8 other patients who are also getting the same medication. In the real world, you wouldn’t necessary know if the person next to you has MS since its a neurological disease but when you enter the medication room, it’s a given that everyone has it.
I have to say it’s a scary reality seeing others in a similar position – most of whom are older and some of whom have a physical disability due to the disease. I’m always the youngest by far and can’t help but feel like I don’t fit in. I don’t want to be categorized as someone with a disability but when I’m there, that’s how I feel.
Luckily I have yet to have a serious negative reaction to the medication. However, I do feel a bit flushed right after it’s over and am fatigued for the remainder of the day. It takes a lot out of me physically. I can count on one hand the number of naps I’ve taken in my life (yes, even with a newborn!) but this last time, I felt so drained I not only fell asleep that afternoon but I stayed in bed all day which is very unlike me. I was told that it takes your body up to 6 months to accept the drug and reactions are possible anytime in that period. I’m hopeful that things continue to go well and this drug is an effective medication that will halt my condition from progressing.