Adapting to the New Normal with MS

Living with multiple sclerosis means constantly adjusting to change. Just when you think you’ve got your routine figured out, MS moves the goalposts. It’s exhausting, frustrating, and often absurd—but it’s also a crash course in adaptation.

Mobility Challenges at 40 (Well, Almost 40)

My current reality? Mobility is becoming more and more of a challenge. I’m not even 40, and I’ve already accumulated a pretty solid collection of assistive devices:

• The Cionic Neural Sleeve

• Three canes (one in each car and one in the house)

• A rollator that doubles as a transfer chair

• And a new mobility scooter that’s honestly become a game-changer for those Disney trips
  

At first, each new device felt like giving up. Like I was admitting defeat. But now, I see them for what they are—tools that keep me safe, let me stay active, and give me a little freedom back. That’s not weakness. That’s smart living.

Ocrevus Infusion #13: An MS Milestone Without Steroids

Yesterday marked my 13th Ocrevus infusion. I spent a couple of hours in a comfy hospital chair (while still working, because life doesn’t pause). Normally, I receive Solumedrol beforehand—a steroid that helps minimize side effects. But thanks to a nationwide shortage, it wasn’t available this time.

I’ll admit, I was a little uneasy skipping it, at first. But surprisingly, everything went fine. No side-effects. No fatigue. No headaches (this is a big one. I always seem to get wicked headaches.). I think after 13 rounds, my body has just adapted. It actually makes me wonder if I even need the steroid going forward. One less medication, No headaches—and maybe even a slightly lower bill. ...Slightly

Speaking of Bills…

Let’s talk about the cost. The price tag on these infusions? Over $100,000. I don’t know exactly how much the steroid adds to that, but when you’re already in six-figure territory, saving a hundred bucks feels like finding a coupon after buying a yacht.

Medical costs, as most people know, are ridiculous—but what really blows my mind is where that money goes. The bulk of that bill isn’t the chair, the nurse, or even the hours of infusion time. It’s the Ocrevus itself. The last time I checked, the hospital charged over $90,000 just for the drug. That’s insane.

Thankfully, I have insurance. Without it, I honestly don’t know how anyone could afford treatment like this. It’s one of those harsh realities of living with a chronic illness: you're not just navigating your health, you're also stuck navigating a broken healthcare system.

Finding Power in Adaptation

MS forces you to change. You don’t get a say in that. But how you respond—that’s up to you. Maybe it’s accepting a mobility aid. Maybe it’s realizing you no longer need a pre-infusion med. Maybe it’s just recognizing that today, you feel okay—and that’s enough.

Adaptation isn’t surrender. It’s power. It’s progress. And it’s how we keep moving forward.

Side note

Mental health is more important than ever. You matter. What you are feeling matters. What you are going through matters. And people love you and care about you. If you don't have someone to talk to, or feel like you can't talk to them, there are thousands of people around the country (and world) that are here to listen to you and provide help when they can. Hell, you can even reach out to me. I may not be the best at giving advice, but I know how to listen.