LIVE QUICKIE BLOG

On June 4^th, 2023, I was finally diagnosed with Myofibrillar Myopathy and Spheroid Myopathy, a Muscular Dystrophy. I was previously misdiagnosed with mitochondrial disease, as were my father and aunt. Thankfully, genetic testing with a proper doctor solved with lifelong mystery for me at 54 years old. I had been slowly losing my ability to walk for many years and now could barely go ten feet. My hands no longer had dexterity and were very weak.

During these cold winter months, it can be nice to stay at home and hibernate with a warm blanket, a hot drink, and a new TV show. However, if you're like me and have wanderlust running through your veins, winter can also be a wonderful time of year to travel.

Life often teaches us that planning is futile. Some believe they have life meticulously mapped out, but the reality is that too many variables are beyond our control, and things rarely go as planned. As a 19-year-old who had just moved to California and was living away from her parents, attending university, and working full-time, I never considered the possibility of living with a disability. But there I was, lying in the ICU, paralyzed.

Traveling with a child who has special needs can seem daunting at first, but having the right tools can make a world of difference. Elijah's ZIPPIE wheelchair has been an essential part of our journey.

After becoming a wheelchair user, once of the hardest adjustments was letting go of my love for heels. I had to embrace a new style, which meant building confidence in sneakers, flat boots, and other footwear I never would have considered before. It wasn't easy at first. It felt like a process of trial and error.