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, these procedures have to take place under fluoroscopy…
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 public speaking, the larger issue at hand is often finding a…
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 is to build a solid medical team, but I’ve somehow collected…
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 living on a prayer that they’ll continue to be able to…
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 red and blue Nerf balls, and the last person standing would…
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 creation, the thought that went into the garments, what inspired the…
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, and everything about it seemed so foreign. My mother stumbled through…
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 much in the past two months due to my hospitalization. Any…
As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet with my health. My energy level feels nonexistent, and I fear that it may be my…
For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or in some instances, multiplied. Nevertheless, I’m grateful to have exceptional care. I have a team of…
