It can be a sticky topic — working (or not working) when living with a chronic illness. We travel so many journeys when we navigate this aspect of our lives. The fact is, each one of us will, at some point, experience our health intersecting with our ability (or inability)…
Six years ago, I met retired Army Maj. Toni Grimes at a busy Phoenix coffee shop. It was my first conversation with a lupus advocate since my own diagnosis in 2016. I made it a point to arrive before her. I needed to soothe a sneaky, queasy feeling…
Having lived with lupus for decades and having spoken to countless chronic illness warriors over the years, I’ve realized that while our varied symptoms hit us differently, we all face one unifying dilemma: toeing the line of looking sick enough that medical personnel and others take us seriously while…
For me, writing has always been equal parts advocacy and therapy. I wanted to help others but I also needed a way to deal with the vortex of emotions swirling inside of me. Early on, I wrote regularly about all the struggle, pain, and heartache associated with…
Have you noticed that certain stressors, environmental factors, lack of sleep, or foods seem to cause lupus symptoms to suddenly express themselves, or current symptoms to increase in severity? If so, you may have identified a trigger. When I was diagnosed with systemic lupus in 2001, I’d…
My sleeping pattern is off at the moment, and I’m exhausted. As someone who already struggles to feel rested due to lupus fatigue, it feels a bit like the sky is falling. In the long run, I’ll probably look back at today and realize it wasn’t that bad.
It’s Sunday. Today consisted of getting up just before midday, eating leftover soup, watching “The Big Bang Theory,” and baking an apple cake and banana bread. After I wandered upstairs midafternoon, my partner, Felix, asked what I wanted to do. My answer wasn’t an indicator of what I wanted to…
Wonderfully weird: That’s how I’d proudly describe myself. I’ve always been weird. And much to the dismay of a younger Kristiana, I’ve accepted that I’ll always be weird. By nature, I’m a clumsy and kooky dork. But I’ve reached a point where I’m just too old to care that…
In the seven years since I was diagnosed with lupus, the first year was undoubtedly the hardest. The first six months were a cacophony of dietary restrictions, lifestyle changes, and medication. I left the hospital after my weeklong stint with a fistful of prescriptions, a head…
I remember the first day I was fully aware of my now chronic fatigue. But it would take a week or so after that for me to give it an official name. It’d been creeping up slowly. For two weeks, I’d been growing increasingly tired, until finally, I felt…