My Ocrevus journey thus far

Wow, it has been a long time! I tend to go through these phases in life where I am really engulfed in “me land” and working on reconnecting from a better place. A lot of people tell me it could help to write through this but I find it hard to put into coherent words at times. But I have missed the real connection I feel when I am laying it all out there with writing.

A little catch up. I am receiving my 2nd full dose of Ocrevus in 10 days!! I am super excited for this one. Well. Kind of. I have seen some of the not so awesome side effects of this medicine. We’ll get that over with first and then move on because I am fully aware of what is really important with this infusion. That being said, I have seen some weight gain. Now, I will say that from a place of celebration because the intensity and duration of my workouts have also increased so I’m sure the weight gain is only temporary.

Aside from Ocrevus temporary side effects, when I am not feeling 100% and break out in a fever for any other reason than my loyal friend, MS, my MS symptoms are sent into a tailspin! I don’t speak clearly, I walk like I’ve had a few too many and generally get the “oh, bless your heart” look from most people I come across. I am able to laugh this off generally; I am hopeful I look worse than I feel!

One of the good things about my experience with Ocrevus is my increased ability to be active! Now, I am not running up mountains or anything however, I am walking without my new accessory (my cane) almost 100% of the time. Is that because of Ocrevus? Or maybe just the newfound physical endurance I have has allowed me to walk a little straighter and a little longer. I can do a full 30 minutes of strength and cardio and, although the rest of my day will be way less active, I can deal with that and continue to celebrate any victories!

Now, the not so great part of Ocrevus. I am almost 2 weeks out from my next dose and experiencing the fatigue I am so incredibly happy had almost (almost) disappeared. It’s like fatigue that is at times laughable because it’s like, “oh ok, you want me to come into the other room? I’ll be there within the hour. I just need a quick nap first”. Now, I am of course exaggerating here but that is clooooose to how I feel when my fatigue sets in. Which is most of the time now leading up to my next infusion. Now, seems like it would be easy to just get my infusion sooner and hopefully bypass this fatigue. Easy peasy – right? No, unfortunately it does not work that way. I did get approval to get it 2 weeks early because of a vacation but not more. I wish I could share the super smart and medically scientific reason why, but I cannot.

So here we are, tired and waiting oh so patiently. All in all, things are good with Ocrevus! I’m a little more, let’s say fluffy, but I am also more active and that’s the important thing. I am also doing intermittent fasting, which has been said in an article by the MS Society, as a way to reduce symptoms – so far so good but this is a new journey. More on that later.

I will update after this next infusion in a couple of weeks. Hoping for a smoother ride now that the nurses and I are aware of my allergies from the last infusions.

~Here’s to helpful meds, relaxation and infusion center yummy snacks. Oh. And continued exercise success 💜

6 thoughts on “My Ocrevus journey thus far

  1. Hunny, I’m sending my best to you for the infusion and fatigue beforehand. So awesome that you are walking well and more active!!! Big loves hunny. Your writing is so beautiful. Thank you for sharing your words and heart.

    Love,

    Shelley Irish

    Visionary Art, Intuitive Arts, Workshops

    http://www.gallerysati.com

    >

    Liked by 1 person

  2. JUST beautiful Lisa and every time you write, it just comes from your heart and helps me understand more and more what you’re experiencing & feeling. And trust me…you look fabulous and if YOU’RE fluffy…. I’m even fluffier and I’m OK with that too. Hoping this infusion goes easily and well for you. Love ya

    Liked by 1 person

  3. Such a positive message, Lisa! Thank you for using with your beautiful writing to help us understand, to smile, and be inspired to live each day with the incredible strength you have💕

    Liked by 1 person

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