What’s the most unexpected thing you’ve learned about yourself since your diagnosis?After already living with chronic migraines for so long, becoming diagnosed with MS truly showed me and taught me just how resilient and strong I had become over the years. That even this new diagnosis could not stop me from even just conquering everyday obstacles. To truly not take for granted the struggles of getting dressed, a good night’s sleep, or even getting to go out into public without being worried who had a cold.
What’s your favorite “trick” or strategy for getting through infusion day, whether it’s a specific snack, a movie, or a special playlist?
When it comes to infusion days, I like to bring along my iPad to have a favorite movie or documentary for background noise while I enjoy the conversations with the nursing staff on that day. I also, for my Ocrevus infusion, eat a little bit of graham cracker to calm my stomach. I tried saltine crackers, and it just didn’t do the trick and found that something in the graham crackers is the best. I also bring along my own water bottle from home and am wearing comfy leggings, my slides and my infusion sweatshirt that has zipper sleeves, because let’s be honest it is cold in any infusion center and the best way to stay comfortable during those days is to have a warmed-up blanket from the nurses and my infusion sweatshirt.
What is one thing you would love to explain to someone about your condition without using any medical terms?In my terms of “MS for everyone to understand,” is it is basically like thinking of seeing inside our bodies and knowing that we have these main set of wires from our head down our spine that control every major function of our bodies. On these wires, there is a rubber coating just like you would see if you were to take apart a plug in your house to repair it and help it work better. The problem comes when our B cells (immune system), starts attacking that coating around those wires. Just like a mouse would in those plugs. Next thing you know, oops there’s a scar that formed, this is a lesion. What makes MS, is this happens over multiple places throughout your nerves along your brain and spine. It causes so many issues from walking, to speech, to bladder issues, to cognitive (thought process). The one remarkable thing about this chronic autoimmune condition is that not one person has an identical diagnosis.
What’s the best piece of advice you have for an infusion nurse?The best advice I have for any infusion nurses who are not familiar with MS patients is that even though you cannot tell that there is something happening, trust the patient. It may be a good day, or a bad day for them on infusion day. It might even be their first dose of a new medication, and a lot of times it is a little worrisome as you never know what side effect, or complication may happen during the infusion or after. To know that the person is grateful for everything you do as the nurse.
What’s your go-to comfort food or activity after a long infusion day?
Infusion day is generally an easy day after. I am going home and hanging out on the couch with the puppies and kitties by my husband who works from home. Most likely falling asleep for a little bit, as the infusion medications wipe anyone out. The purpose of the medication is to deplete the immune system to help slow the progression of the MS from destroying any more of the myelin surrounding the nerves. Supper that night is easy, and crockpot chicken with rice and veggies generally, unless my husband decides to cook something different.
