Unbeknownst to me, when I walked into the emergency room on Sept. 16, 2020, my life was about to completely change forever. I assumed I had an infection or COVID-19 and would be given medicine and a doctor’s note to stay home and rest. But that wasn’t the case. Instead,…
He looked up at me with his giant, deep brown eyes, and my heart immediately felt like it would burst. Before I could even stretch out my hands to signal for him to climb up, he was already settled in my lap. His tiny hands, feet, and voice melted my…
The slow and monotonous beat of heart monitors echoed throughout the dimly lit hallways. I could hear my blood pressure cuff inflating every hour. Was it Tuesday? Friday? Hours seemed to turn into days, and days into weeks. I’d hear whispers that weren’t there, my sleep was always being interrupted,…
A deep yawn escaped my lips before I even realized it, and I immediately regretted it. I reached for the left side of my face, cradling it like a baby animal. Pain shot through my gums, molars, jawbone, facial tissue, and even into my sinuses. It was just one of…
I pushed the door open and was met with blinding sunlight and strong sea winds. The smell of salt water and grilled chicken filled the air, as did the sound of Caribbean steel drum music. I traversed several decks on the cruise ship — moving around lounge chairs, descending multiple…
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. I’ve endured five years of needles, regular blood work, IVs, bone pain, brain fog, loss of hair, eyebrows, and eyelashes,…
There I was five years ago, sitting in my car much longer than I should have. Just the thought of walking to the pharmacy was daunting, nearly panic-inducing. The longer I stared at the Walmart entrance, the farther away it got. I just wanted to go home, bathe, and get…
A dull but fierce ache swept through my left leg like wildfire. I was sound asleep until a charley horse ripped through my calf muscle and woke me. The pain was so intense that I gasped and ripped away the blankets to assess my leg. My fiancé and I watched…
Typically, when someone wishes you a happy anniversary, it’s to celebrate another year in a relationship, marriage, or even a career. It’s a time to reflect on all the effort put in, the adventures experienced, and the achievements made during that time. This week marks an important five-year anniversary for…
Being chronically ill and disabled long before I turned 40 is not how I expected my life to unfold. Rare diseases, permanent organ damage, and a multitude of comorbidities have forever changed my future. While it’s no secret that there are negative aspects to living with a rare, chronic illness,…
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