“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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As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life…
For the past few months, I have been experiencing some debilitating health issues. I’ve spoken with my doctors. I’ve tried different medications. And while as a team, we have figured out ways to give my body some reprieve at…
Digital detoxes are all the rage these days, and for a good reason. If you didn’t already know, a digital detox is time spent disconnecting from all devices with a screen — smartphones, computers, and…
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted…
The other day, I read one of my old columns and thought to myself, “Honey, if you only knew what was to come.” My January column, “Please Stop Glorifying Being Homebound,” was all about how…
My body has never handled stress well. Come to think of it, does anyone respond well to stress? Typically, my body reacts to stress in the form of gastrointestinal issues. This comes as no surprise…
I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if a global pandemic wasn’t happening…
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my…
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think…
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and yes, I am one of…
All my life I’ve been freakishly in tune with my body. It sounds like a great quality to have, right? I’ve always been hyperaware of my symptoms and can spot when something in my body feels off. This bodes…
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or…
