So, when I go to my infusion, I like to bring certain stuff. It used to be, like, everything but the kitchen sink, but now I’ve tailored it down to a few specific items. I bring my tablet to watch shows along with my headphones, so I don’t disturb anyone else. I used to bring my laptop when I had homework, but I get so sleepy during infusions I can’t focus on anything productive, so I watch movies instead.
About halfway through I get really tired, so I take a nap. That helps me feel rested and better after the infusion. I do bring a book just in case I can focus on reading, but usually that’s a negative! I have some music on my phone, so occasionally I’ll listen to that if I’m in the mood.
I love to bring snacks — fun snacks (healthy ones too, lol). Sometimes the steroids leave a bitter taste in my mouth, so I’ll grab a piece of chocolate or something sweet to take the bitterness away. I’ll pack a peanut butter and jelly sandwich for lunch, but usually my mom will stop by with lunch. Oh, and I bring water, however I don’t drink a ton of water during my infusion because I am constantly getting up to use the restroom.
The few days before my infusion, I drink tons of water to help my veins be hydrated for an easier IV. The hydration also helps me feel better during the infusion. I skip anything too sugary leading up to and on the infusion day. If I need something other than water, I stick with less-sugar lemonade or iced tea.
My goal is to be comfortable, so I wear leggings or lounge pants and a comfy t-shirt that goes above my elbow to accommodate the IV. I bring a sweater or hoodie to use if I get cold, along with a fuzzy blanket to snuggle with. I am an avid sandal wearer, but I bring socks with me so my feet don’t get cold from the room temp. My infusion center usually has a pillow for every patient, and that is definitely helpful when I want to take a nap or if I just want the pillow in my lap. One time I brought an airplane neck pillow to use while sitting in the chair. That wasn’t my favorite, but not bad.
The nurse administering my infusion stressed one tip I think is important: speak up. If something is feeling weird or I’m uncomfortable, I have to speak up because otherwise no one will know. Almost every infusion I have a reaction, and I am aware that when I feel it happening, I cannot be afraid to say something. So, I do, the nurse treats it, and then I feel better. So, speak up! (This also includes having to use the restroom.)
For more information on OCREVUS dosing, click here.
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