tips

I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of…

Summer is one of my favorite times of the year. The days are longer, the adventures seem endless, and the smell of barbecue, flowers, and freshly cut grass fill the air. However, high temperatures during the summer, especially in tropical climates, can pose a challenge for those with neuromyelitis…

I love beach vacations. I put my phone and laptop away, grab a good book, and head out into the sun. But the sun is not to be messed with, especially for an immune-suppressed patient. Many medications can cause sun sensitivity, among other challenges. According to the U.S. Department…

¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…

In the years since I was diagnosed with NMO, I have had good days, and then bad days when I couldn’t even get out of bed. One summer, I spent 16 weeks in bed, likely due to major side effects from one of the NMO drugs I was taking.