Chronically Joyful

As my first Ocrevus infusion approaches, I’ve been doing my best to prepare in ways that are expected, but also many that are not! See my previous post for a full rundown of what this appointment will entail, but the key to success for a new medication that takes multiple hours to infuse is similar to a well-run kitchen.

“Mise en place” is a French phrase that translates to “everything in its place;” can I get a “yes, chef!” 

Everything comes down to the preparation, and for this appointment I’ve split this into two categories – prep for the day of, and prep beforehand. Let’s dive into the beforehand!

The reason I’m working so hard to prepare comes down to one simple fact I hate to admit: I am scared. The only IV infusions I have experienced have been with Solu Medrol steroids. My experience with this has never been pretty – it has always been administered in response to a relapse, whether it be because I could not walk, or just because my scans show 10+ new lesions developing in my myelin sheath. It is never a one and done kind of situation, I have had 3 day courses, a 5 day course, and in the beginning a 7 day course. The only way to do this efficiently is by leaving a port in the body to easily administer the IV the following day. You shower with the port, you sleep with the port, you become one with the port. My port always only has a lifespan of 3 days – I have had nurses challenge this and claim they can insert it better than anyone else, and it always self ejects on day 3. 

What no one tells you before IV infusions (most of the time) is that you must arrive well fed and very hydrated or they will never find a vein, and will probably blow multiple in the process of trying. This has been my experience with every single IV I have ever had, and because I’m scared, my veins will hide. The good news here is that there’s no need for mr. Port this round, so let’s hop right to the meat of this post!

What can I do to make sure this infusion goes seamlessly?

While many things are outside of my control, there are a few things I can do to try and make things easier. 

Nutrition

Having a background in sports nutrition, I remain very passionate about the potential healing power of food and am very attuned to how it makes me feel. Since getting the date for my infusion, I’ve really tuned into making sure I’m getting enough of what’s going to help me:

• High protein
• High fiber 
• Low sugar 
• Minimal to no drinking alcohol 

Heading back into the office has made this challenging only for the fact that I’m incredibly addicted to the chicken salad at my job, but the beautiful homemade chips the wrap comes with hurt me so good (LOL). 

I’ve also recently decided I’d like to cut back on drinking, if not cut it out entirely. It hurts more than it feels good in the moment, and I’ve been very inspired by the stories from folks I admire. More to come on that in a separate post!

Daily Exercise 

This looks so different for me than it did just a few years ago, it’s still jarring. Before my symptoms started getting more intense, you could find me in the gym 6 days a week for at least an hour at a time. While weight lifting remains a deep love of mine, i’ve finally learned to listen to my body and accept my limitations. 

Consistently, I lift about 4 days in a week, hiking 1 day, focusing on walking as much as I can, and then just trying to survive. These workouts aren’t always high intensity, or top notch sessions of progressive overload, but the fact that I still try is officially good enough for me. The best we can all do is try! 

Why weight train?

Even without the Multiple Sclerosis, we lose bone density and muscle mass naturally as we age. The best thing that we can do to preserve our longevity (happily!), is maintain muscle density and engage in moderate cardio. Weight training is the bread and butter to maintaining optimal health, with the added perk of improving your physique! Even in the height of my blindness in 2024, I continued to weight train when I physically could (with light weight) simply because it felt good. It felt good to move my body; it felt good to feel strong when I know my muscular system is depleting at a faster rate than the average human; it felt good to maintain some level of normalcy. It felt good to still feel like myself. 

What else can we do?

As someone who adamantly hates most cardio, and is terrible at all sports, I choose to get my cardio via walking and low impact aerobics. I invested in a walking pad for under my fancy standing desk, courtesy of a colleague, and strive for at least 7,000 steps daily. I’m not trying to run marathons or break any records (right now, anyway) but might just pick up rollerskating because life is too short, amiright?! 

The last piece to the daily “Mise en Place” puzzle 

WATER. This would go for anyone, but as someone who went into Renal Failure back in 2019 for no discernible reason, I don’t mess around with this. I am never seen without my 32oz Nalgene, filled to the brim. Whatever your daily recommendation is, I challenge you to pass that limit, especially if you have a chronic illness, because my body doesn’t seem to absorb hydration the way it’s supposed to. 

What can I do the day of my infusion to keep this momentum rolling? 

First, I did heed the advice given to me and secured a ride to and from the infusion center. I don’t know if this is really necessary, but given how funky MRI contrast used to make me feel, playing it safe. I will also be sure to drink plenty of water and indulge in a bigger breakfast to make my pesky veins easier to find to alleviate potential pain and suffering (queue memories of my recent traumatizing MRI experience). I may consider foregoing my usual second cup of coffee to spare my tiny bladder too many trips while hooked into the IV machine, but we’ll see how the morning goes (hehe). 

What am I bringing to the appointment? 

Thanks to a fantastic network of wonderful friends in the MS community I’m fortunate enough to be a part of on Instagram, I feel well prepared for the day! While I don’t have the fancy sweaters with the zippy sleeves to make vein access easier, I will be bringing some essentials to keep me happily occupied:

• A large sweater or blanket because I’m permanently freezing
• A big bag o’ snax, because this bit me before the MRI and I’ll heed this advice this time 
• Hard candies to help combat the taste from the medicine 
• My water bottle, AKA, old faithful 
• My obnoxiously large book (currently reading The Bachman Books)
• A phone charger so that folks can keep me virtual company over the multiple hours I’m stuck in the chair! 

I’m feeling really optimistic for this treatment to finally calm my flaming brain; I may have over 40 lesions in my head, but that has never stopped me before. From this, I’m hoping to maintain my physical health I’ve been fortunate enough to preserve over the last 10 years. I hope to regain some semblance of emotional control and halt the mood swings that have overtaken my daily life. I hope to gain clarity in what I want from my future, and what I really need from whatever years I have left.  

So, readers, cheers to the next phase! Thank you for sticking with me through this all; I’ll see you on the other side of this infusion.