Columns

My lungs are on fire. My heart is thumping so hard, I can feel my heartbeat in my ears. My breathing is heavy and labored. Pain shoots down my left leg from my sciatic nerve. I stop on the last landing to catch my breath and lean on the post…

I deal with guilt often. Guilt that I can’t work my full-time job anymore, guilt that I need rest after every activity, guilt that I can no longer be the cool mom who’s up for anything. My life completely changed in September 2020 when I became gravely ill. I…

Life with chronic and rare illnesses is undeniably complex. I constantly juggle both existing and new symptoms, frequent doctor appointments, biweekly treatments, and the ongoing challenge of staying attuned to my body. Regardless of my mental resilience, my body is no longer the same, and it simply can’t live life…

Many people may consider something rare as being unique. One of a kind. Nothing else is like it. Being rare can suggest exclusivity, or being in a class of its own. For me, rare means dealing with five different rare diseases. They are lupus, hypermobile Ehlers-Danlos syndrome (EDS),…

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Raising children, maintaining a household, cooking meals, grocery shopping, paying bills, working, and the daily complexities of life can strain relationships…

Living with several rare and chronic illnesses is one of the hardest things I’ve ever faced. I currently live with lupus, Ehlers-Danlos syndrome, immune thrombocytopenia (ITP), thrombotic thrombocytopenic purpura (TTP), and atypical hemolytic uremic syndrome (aHUS). These conditions bring a slew of lifelong comorbidities and…

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “OK, guys, I told you Mom is cool. Your mama just got a face tat!” My youngest child furrowed his eyebrows…

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. A sharp twitch jolted my right eye, like lightning striking. I closed my eyes, pressing my hand over the aching spot.

My mouth practically watered at the sight of the cool, crisp, and bubbly fountain drink filling the cup. The cashier handed me my receipt and passed me the drink — my favorite part of eating out. I eagerly tore into the straw wrapper before I even sat down, craving that…

The first few years after I became chronically ill from a handful of rare diseases were rough — medically, emotionally, physically, and financially. There were many times I had to get creative just to make ends meet. But one lucrative money-making endeavor I used to do often is no longer…