I’m all moved out of my old home. But fully settled into the new one? Not even close. Even with all the planning, the lists, the pacing, and the four full weeks I gave myself to move from one home to another, I still managed to overwhelm my body and…
Columns
Although I’ve probably had immunoglobulin G4-related disease (IgG4-RD) for over 30 years, I was officially diagnosed about 10 years ago. Despite this, until recently, I’d never told anyone about it apart from medical professionals. I’d always be vague about what was ailing me, brushing it off when anyone asked.
As a working woman living with immunoglobulin G4-related disease (IgG4-RD), an autoimmune disease, I’m constantly looking for ways to save myself time and spare myself joint and nerve pain associated with the condition while completing everyday tasks. My spine, hands, and feet are impacted the most. Typing aggravates the joints…
The time on the clock when I opened my eyes on Thursday, June 18 was 1:45 a.m. I’d woken up just in time to make sure that my husband got up and out of the house. He’d been given an early assignment to cover the Knicks championship ticker-tape parade in…
I blinked my eyelids rapidly, hoping to generate some sort of moisture, but it didn’t work. The drier my eyes got, the harder it was to see clearly. And the blurrier my vision became, the more scrambled the letters on my laptop were. Staring at a laptop all day can…
Moving is never just about boxes. When you live with a chronic illness like IgG4-related disease, moving becomes a full‑body experience: physical, emotional, logistical, and deeply personal. I’ve moved more times than I can count: across four countries growing up, across cities while at university, and then again when…
Note: This column describes the author’s own experiences with Rituxan (rituximab) and thoughts on other treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Four and a half years ago, I would have taken any route that promised a chance…
As I plan upcoming work trips, I’m reminded how complex my scheduling is. For many, planning just means booking and showing up. But because I live with a rare chronic illness and juggle multiple roles, my plans constantly shift with medical and work demands. My calendar isn’t just filled with…
There’s an art form in Japan called kintsugi, which entails repairing broken pottery with lacquer mixed with gold or silver so that the cracks don’t disappear. Instead, they become part of the design. I think about kintsugi a lot, because chronic illness doesn’t just break you once. It…
Those of us with rare conditions like IgG4-related disease often talk about the struggle to access affordable and equitable healthcare, but what happens after we temporarily overcome those hurdles? I say “temporarily” because, as many of us know, the obstacles never truly end. We’re constantly forced to jump through…
