I was lulled into thinking that I could give American healthcare another chance. I had a 14-day stay at the James A. Haley Veterans’ Hospital in Tampa, Florida, where I was treated like a VIP. I heard about the culture shift throughout the hospital, and I felt it through…
No matter what happens, the world keeps turning. It doesn’t stop for moments of happiness or moments of heartache. Sometimes I wish it would come to a halt. Not for too long. Just to give me enough time to wipe my tears and take that deep breath necessary to pull…
People tease about how there are no manuals for rearing kids. Well, there is no manual on how to navigate an illness like lupus, either. Everyone is simply winging it and hoping they are making the right decisions. It seems lupus is always delivering something new, with no instructions…
Lupus is my greatest motivator and most consistent catalyst for change. Its ability to uproot my life at any time has the potential to be devastating. But with the knowledge that all aspects of my life are temporary comes the courage to live in the moment. I’ve had four trips…
A routine visit with my primary care doctor turned into the biggest reality check of my life. It led to a two-week hospital stay followed by a move to a 24-hour rehabilitation center where my weak immune system required full isolation. Life seems to build up armor before the battle.
I write this in the middle of nowhere, sitting in a camp chair next to a mountain. Over a year ago, my partner, Jordan, and I set out plans to tour the southern Australian state of Tasmania. And last Monday, hours of planning and months of preparation finally came…
I sit here on day 11 of my first hospital stay of 2020. I’ve learned that pharmaceutical companies test how wide your esophagus will open to accommodate pills that would make a horse gag. I am doing all I can to remain sane, but few things make you lose track…
Lupus often takes years to diagnose. By the time doctors work it out, the disease has usually been active in the body for long enough to cause significant and sometimes irreparable damage. At the time of my diagnosis four years ago, I was an unusual and lucky case. Though…
I wish there were a way to take screenshots of the significant moments of my journey with lupus. I wish there were a way to collate those moments, and the feelings that came with them, and turn them into a USB download. I wish that when I started to explain…
Picture it: It’s 2016, and life was good. I had hair. And then all of this unexplained pain ascended onto my body. I remember it like it was yesterday. Once doctors declared what tortured me, I signed up for pretty much every Facebook group with the word lupus in it.