Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding tube requires me to go…
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I got out of my van at the hospital for what felt like the millionth time that month, and I could hear the deafening sound of a helicopter landing above me. Though hundreds of feet above, its whirling sound…
I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on the internet, I had a…
I’ve never been the type of person to set goals. I realize how this could be misconstrued. But the truth is I’m not lazy or unmotivated. In fact, I pride myself on being determined. I’ve always been willing to…
I once knocked over our Christmas tree when I was 3 years old. To this day, I’m not proud of it, and frankly, I’m still a little traumatized by it. I was simply trying to get a good view…
Does anybody actually like the sound of their own voice? Unless you’re a gifted singer, that was a rhetorical question. I come from a musically inclined family, so they tend to say yes when I ask this question. But…
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…
