I was recently feeling a little tired but was still able to function. I went to breakfast with a friend on Saturday and struggled to sit up once I returned home. I lay down around 1 p.m. that afternoon and didn’t get up until Monday morning. Showering took what little…
I’m frustrated with my body that causes me considerable discomfort and uncertainty. Since my diagnosis, I’ve had an average of four hospital stays a year. I have done my best to avoid an admission this year. I don’t see my doctor as often as I should, but it’s not because…
Adjusting to life with a chronic illness requires you to alter your mindset in many ways. It might be a fundamental change, an existential shift that alters your perspective on life itself. Or it could entail changing your values and what something means to you. I used to hate napping…
Once upon a time, I was an adventurous eater. I looked forward to visiting new restaurants and trying their signature dishes. Along with a great meal, a glass of red wine was a must. Lupus changed all that. I was a surf-and-turf kind of girl. I loved lobster, and I…
My partner, Jordan, has been in the hospital for several days to treat a flare-up of his ulcerative colitis. He is in the same hospital where I was diagnosed with lupus. The familiar smell of hand sanitizer sparks flashbacks to my time here in 2016. I remember what it…
At the end of 2015, my body was doing all kinds of strange things. I was caught in a revolving door at the hospital and seeing every specialist known to man. But no one could tell me what was wrong. On Jan. 1, 2016, I took a trip to Daytona…
If I could give one piece of advice to someone with a new diagnosis, it would be this: Lupus can be anything, but ultimately, it will be what you make it! Except for anxiety and depression, lupus is largely a physical illness. It causes a long list of symptoms,…
I didn’t understand what depression was until lupus. Before my diagnosis, I would feel a little down occasionally and allow myself three days of a pity party before I’d say, “OK, solutions.” I would find an answer to whatever was bothering me or stop worrying about it. That was the…
One thing I’ve noticed in the three years since my diagnosis is that people who don’t have ongoing health issues tend to pigeonhole those of us with chronic illnesses. But just as people’s experiences, tastes, and passions in life differ, so too do their illnesses, symptoms, medications, and side effects.
I liked to read and write as a kid. I journaled often and wrote as if no one would ever read my thoughts. Sometimes they did, but that never stopped me from speaking my truth. I was boldly honest about what I felt or thought. I debated whether I should…