“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
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I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to read it. So it only…
Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored lenses. I see that in…
It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding tube can clog easily. It’s…
“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of months ago. For the second…
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small intestine, and not my stomach,…
Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love…
When you’re living with a complicated disease such as SMA, it’s half the battle to have a knowledgeable and trustworthy medical team helping to manage everything. I’ve always been fortunate in that respect. I know how difficult it…
Whether it has directly affected you or not, chances are you’ve heard about the formula shortage happening in the United States right now. It’s a serious issue, one that has people rationing what they have and…
While most of my elementary school days are a bit fuzzy in my head, lately I can’t stop thinking about how we used to play dodgeball during gym class. Our class would split into two groups, we were given…
For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to…
Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier,…
I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my last column, I haven’t written…
