Truth Be Told — Sarah Jones

I got a COVID-19 vaccine this week. It was the first one I’ve had since going off Rituxan (rituximab), and wow, it kicked my butt. It reminded me just how effective Rituxan is at wiping out the immune system, because without it, my little overactive system went into full overdrive.

One of the guiding principles I’ve come to embrace in my life is something that might sound counterintuitive in our fast-paced world: underscheduling. For most of my life, I’ve been the kind of person who packs my days too full — committing to too many tasks, leaving little margin for…

Finding the right Medicare plan can be downright daunting. There are so many options, often with only slight variations in coverage, that it can make your head spin. To make things even more confusing, many plans have nearly identical names. Add in the fact that Medicare itself is evolving —…

Remember when the phrase “this is a hamburger on steroids” just meant a ridiculously big burger piled high with toppings? Before I got sick, “on steroids” was just a funny exaggeration. Now that I’m living with ANCA-associated vasculitis, though, that phrase hits differently. Steroids are no longer just something…

When living with vasculitis, we patients often zero in on our specialists, and the list can feel endless: rheumatologists, pulmonologists, nephrologists, otolaryngologists, cardiologists, and more. But what sometimes gets lost in the shuffle is our primary care physician (PCP). As I’ve settled into a new city and searched for…

“Make new friends, but keep the old. One is silver and the other gold.” If you were ever in Girl Scouts, you probably just started humming that tune in your head. I know I did as I typed it out, and it brought back such warm memories. Last month, my…

I’m a big fan of talk therapy. Always have been. I believe an outside person can offer perspective, honesty, support, and the chance for real healing. I’ve joked for years that every baby should have a “therapy trust fund” so that when they’re ready, they have the means to seek…

“Energy is your capacity to keep moving forward.” — author, entrepreneur, and speaker Suneel Gupta For those of us living with a rare disease like ANCA vasculitis, this quote may resonate deeply. Energy, for us, is limited. It’s precious, often fleeting, and sometimes unpredictable. Yet the way we choose…

When people ask about your bucket list, you probably think about travel, adventure, or experiences you’ve always wanted to have. But here’s something you might not have considered adding to the list: getting a medical second opinion, especially if you’re living with a rare disease. I’ve found it incredibly helpful.

Warning: If you’re someone who avoids anger like the plague, you may want to sit down for this one. But stay with me — because research suggests that allowing yourself to feel anger might actually support your happiness. I know this advice might sound strange coming from someone who…

Have you ever felt like your brain just won’t cooperate? Like you’re wading through thick sludge trying to think clearly? You’re not imagining it, and you’re definitely not alone. As someone living with ANCA-associated vasculitis, I’ve heard multiple doctors say that brain fog isn’t part of this disease. But…

Living with ANCA vasculitis or any chronic disease can feel like an endless uphill climb. The symptoms, doctor appointments, medications, and unexpected flares can take a toll on the body, mind, and spirit. Some days it’s hard to stay hopeful, let alone cheerful. But even in the hardest moments,…