A hip replacement is not as “simple” as some people might portray it. As many of you know, I recently had a total hip replacement. Before the surgery, people kept saying things like, “Oh, those are easy!” or “My neighbor was walking in a week!” And every time, I…
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Living with a chronic illness like ANCA vasculitis teaches us many things, often lessons we never asked to learn. One of the most powerful lessons I’ve discovered is the importance of holding on loosely — to the good days, the tough days, and everything in between. When I grip…
Recently, I was talking with friends about navigating life after an accident that left one of them with post-concussive syndrome. Both are, without question, among the smartest people I know — and I’m not being effusive. Yet that single event transformed their lives in ways that feel profoundly familiar to…
As I’ve been sharing, I’m preparing for a hip replacement. And, as is often the case with ANCA vasculitis, nothing about this process has been simple or straightforward. After a thoughtful and thorough conversation with the pre-surgery team, we made the decision to move my surgery back. Why should…
Winter feels different when you have ANCA vasculitis. That’s especially true for me, because I recently moved to Michigan after living in the desert for 25 years. I’m still learning how to navigate real Midwestern winters and am far from mastering it yet. The shorter days, cold weather, and…
A new year can feel complicated when living with ANCA vasculitis. For us, it’s not a clean slate, but rather a moment for reflection. We look back at what our bodies carried us through and look ahead with the quiet hope that this year might unfold a bit more…
Holidays can be wonderful — full of joy, connection, and tradition. They can also be complicated, especially for those of us living with vasculitis. This season, I was reminded of the importance of sharing openly with the people we love about what this disease means in our day-to-day lives.
Living with ANCA vasculitis asks more of us than most people understand. It demands we become experts in our own bodies, pay attention to small shifts, and make decisions that most people never think twice about. And when your kidneys are part of the story, everything can feel even…
As we move through this season of gratitude — along with the stress, pressure, and emotional noise that often comes with the holidays — I find myself reflecting on the people who help us navigate this unpredictable, exhausting, and frequently overwhelming disease that is ANCA-associated vasculitis. Living with…
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.
Recent Posts
- Immune cell surge tied to inflammation and disease activity in active GPA
- Amgen stands by vasculitis drug Tavneos after FDA wants it pulled
- Preparing for hip replacement surgery with ANCA vasculitis
- Protein building block may be a therapeutic target for childhood AAV
- European agency reevaluates AAV drug Tavneos after trial data concerns