“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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Something you may not know about me is that I have two homes. My first abode is a one-story home that was built to fit my needs almost 20 years ago. It’s in a quiet neighborhood with broken-down streets…
“OK, SMA. You win,” I thought after signing off from a virtual meeting. I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of my recent health woes. But…
Among the many SMA symptoms I live with every day, fatigue has permanently staked out its territory at the top of the list. I am perpetually tired. There are days when my fatigue gets the best of me,…
As many readers of this column may know, SMA is considered a rare disease. But what some may not know, or simply overlook, is that people with SMA don’t share the exact same experiences. When…
Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more difficult to place each time…
Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the hospital. Thankfully, it went as…
The best advice I could ever give someone is simple: Get more dogs. I guess if cats are more your thing, that’s OK, too. What’s important is that no matter the animal, they bring you joy. After all, that’s…
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…
