About

Hi there! My name is Ashley. I am 24 years old, I am from NJ, and I have a chronic illness. Oh, and I am a Disney fanatic.

So you might have some questions after reading that blurb. Fear not, I have some answers. Millions of people around the world live with a chronic illness. Some of us who have chronic illnesses have learned, to some extent, how to cope with the everyday insanity. Others (like myself) are still learning about our bodies, even into our 20s.

I have Sickle Cell Disease, a blood disorder that causes round, donut-shaped red blood cells to turn into pointy, crescent-shaped ones. As you can imagine, the sickled-cells get caught in blood veins very easily. This causes a ‘pileup on the freeway’ and results in pain, fatigue, blood transfusions, and cursing. I have had Sickle Cell Disease since before I was born. But I am still learning new things about my body and how this disease works. I have a milder form of the disease, and I give all the props in the world to those who have a more severe form.

While I am still learning about myself, I have learned ways to keep my body calm (stress causes my sickle cells to have an awful field day). Which is where the Disney aspect of this blog comes in! I love going to Disney World, watching Disney movies, listening to Disney music, and collecting Disney art. I am not as eccentric as my other fellow Disney enthusiasts, but I am at a higher lever of excitement than most. I use Disney to calm myself down to prevent a sickle cell crisis. When I feel the pain coming on, I put on Disney piano jazz or watch a classic movie.

I also love planning trips to Disney World in Florida. My grandparents on my mother’s side had a beautiful house in Florida for nearly 30 years. They are getting up in age, so they moved to New Jersey in 2018 to be closer to my family. Although I love having them closer, I really loved their Floridian home. My parents would take long drives with me and my younger sister from NJ to Florida during the summer. We would stay at my grandparent’s house, but we would always make sure to get a trip to Disney in before we went back home.

Disney World (and really all of Florida) has really cornered the market on great vacations. The nice weather, the beaches, the entertainment, the abundance of places to eat….it is a recipe for a great time. For those with a chronic illness, we sometimes get so caught up in the excitement of the trip that we forget about our ‘forever roommate’. We want to focus on having the best time and forget about our reality. I know that I have done it on more than one occasion. And my body has paid the price for it as soon as the vacation ended.

Well, I am here to tell you that it doesn’t have to be like that. You can still have a great vacation, Disney or otherwise, while living with a chronic illness. I am here to tell you how I make the most of my vacations with Sickle Cell Disease. I will walk you through what works for me, tips and tricks I have learned, and my opinion on what the best fireworks show at Disney is 🙂 . I am in no way a medical expert, but I am an Ashley expert (usually). And what works for me might work for you as well.

Together, we can go the distance!!!