Chronically Joyful

What a difference between the first half dose and this second infusion – for the better! While I did not have a window seat this round, things couldn’t have gone better. 

First, physically getting to the infusion center this round was significantly easier since I’d done it once before and knew where to go. It is not an understatement to say that mapping a new area in advance can really improve an overall experience (it also helped that I didn’t crumple my parking validation immediately upon receiving it from stress LOL). 

The Difference

While I was disappointed to be led further into the clinic, away from the comfort of daylight, I was given my own room! I had a moment of apprehension when my nurse this round (nurse Dez, which is easy to remember because one of my besties is also named Dez!) manages mainly urethral infusions, so the room only had a hospital bed. You’d think I’m used to these settings, but over 10 years later, I’m still trying to pretend that I’m not sick. 

This round, I also remembered my peanut M&Ms, which was bittersweet; I really enjoyed them and they did help curb the taste in my mouth I got from the Solu Medrol this round, but I ate so many of them I made myself incredibly nauseous for the rest of the day. Worth it? Absolutely. 

While I forgot my headphones, having a private room had its benefits as I was able to listen to the Moody Blues without them comfortably while not disturbing other patients. Learning from the first time, I offered the same hand as the first infusion, knowing it was still a bit bruised but extremely viable; this worked in my favor. 

Pre-meds was the exact same process, as was the Solu-medrol, though I’m fairly convinced I got more of the steroid this time because I could taste it and felt a bit funky during that period of time between pre-meds and the Ocrevus. 

The best part of this experience, aside from getting a good vein on the first attempt, was the fact that I experienced absolutely no expected side effects! I had no infusion reaction, which is also a reason I feel they increased the steroid dose this round. Something interesting to me was just like the first time, the dose was slowly increased every 30 minutes, but my blood pressure wasn’t taken a single time aside from right before and right when it was finished. 

Unlike the first time, when treatment began, I experienced such intense exhaustion that I only made it 21 pages into the new book I was excited to read! I napped through the entire experience (when I wasn’t eating peanut M&Ms) and while I woke up incredibly groggy, I felt great! 

The Aftermath

After getting home, I felt absolutely unstoppable; my energy levels were through the roof! I wanted to take on tasks I normally felt too tired to accomplish, call everyone I knew, and could not stop laughing. Honestly, since finishing this experience, my mindset and attitude has been incredibly positive to the point where strangers are noticing the ridiculous smile plastered on my face permanently. 

I’ve had sporadic numbness in my hands, wrists and arms but they are fleeting and often end quickly. If that’s the only true side effect I experience, I’ll take it! The one top of mind for me is the heightened risk of picking up infections, and illness is rampant this time of year. I feel strong and have been washing my hands relentlessly, but have that in the back of my mind at all times. 

I’m feeling strong, inspired, and ready to take on the world! I am grateful for the Ocrevus, but have also chosen to make an enormous shift in my mindset overall that has brought only positive outcomes. 

Cheers to this next chapter and continuing to pursue beating my own odds!