Lupus is not a happy disease, yet I have always been a joy junkie who looks for anything positive in my challenges. In my prior life, I was always physically active. Given what my body now endures with lupus, I have difficulty moving at my former hurricane pace.
Many things about my relationship with my partner, Jordan, are unique. As two 20-somethings, each living with our own chronic illness, our experiences are a world away from those of our peers. In most “normal” relationships that involve chronic illness, there is a caregiver and a care receiver. In…
I used to be a neat, organized person. Being diagnosed with lupus, however, turned my world upside down. I was bombarded with new words, new medications, and new doctors. Suddenly, I had to have a dozen different tests for things I had never heard of before. And somehow, the…
My rheumatologist’s office is almost two hours away from my home. He is highly regarded in his field, so I make the trip to see him every three months. I trust him to give me good advice. Starting at my first appointment, he has asked many questions and listened carefully…
Living with lupus makes me feel a little precarious. I can’t fully enjoy the little victories in my health due to the fear that they’ll immediately be followed by a downhill slide. Last year was a doozy: For most of the year, I seemed to move endlessly from one…
When your list of chronic illnesses keeps getting longer, it’s hard to find things to be grateful for. It is so easy to sink into a deep depression and think that you will never be happy again. These kinds of thoughts can become self-fulfilling prophecies. Slowly but surely, I…
After three years, some things are finally leveling out for me. When I was diagnosed with lupus three years ago, I really felt that the entire rug had been pulled out from under my life. In fact, it had. When you are told your body has turned against you and…
My doctor sent me for a sleep study after my husband told him how loudly I snored. I tried to tell them that it wasn’t that bad, but as it turned out, it was. The night of the study, they put a continuous positive airway pressure (CPAP) machine…
It doesn’t matter who you are, you have problems. We all have problems. I always say that even babies cry. We are all works in progress, and there is not one thing perfect about any of us. Sometimes, “healthy” people look on those who are not as if they are…
Being an adult isn’t anything like I imagined it. I also never imagined being diagnosed with a chronic illness at the start of my 20s. When I was younger, the idea of being an adult was exciting. Freedom, responsibility, and control seem to be things we want until they are…