Vacationing While Chronically Ill

Dream in light years, challenge miles, walk step by step.

William Shakespeare

A few days ago, I got back from a 10 day vacation to the Bahamas and Florida. My entire family went for my grandparents 50th wedding anniversary. We did a 5 day cruise to Nassau and Freeport, and then we did 5 days in Florida visiting Disney, SeaWorld, and Discovery Cove. Since we started planning the trip back in January, I have been stressed out and anxious. I knew that my body could definitely handle the cruise, but I wasn’t so sure about the Florida part. I didn’t know if my joints would be able to handle all of the walking in Disney, and it took me a few weeks to make the decision. I wanted to go, I wanted to be able to make these memories with my family, I didn’t want all of the chronic illnesses that I have to take another part of my life away. I decided that I was going to do the entire trip, no matter what. In the weeks leading up to the vacation I talked to my doctor a lot. I wanted to make sure that I took all of the necessary steps to avoid a flare up. I’m not able to be on long term steroids (like Prednisone) because there is a chance that Scleroderma is laying dormant inside of me, and drugs like that can bring it out, which nobody wants. So, because of that, to avoid flare ups if I’m doing a lot of walking, I can take a Medrol Dose Pack of steroids, which lasts 5 days, and doesn’t give me any side effects, and it is a lifesaver. So my doctor prescribed that for me, along with a note for a wheelchair at Disney if needed, and I also brought knee braces. The cruise was so amazing, I had so much fun with all of my family (there was 25 of us). We did a photoshoot on the beach in Nassau, the pictures are so beautiful, and I’m so thankful to have them forever. I was very lucky to have felt so amazing for the entire cruise, my joints didn’t hurt, my fatigue wasn’t too bad, and my mental health was pretty good. Once we got to the hotel in Disney, I was very anxious. I was so afraid that I wasn’t going to be able to last the entire week, but I was so determined. In the 2 years that I’ve been living with all of my illnesses, I’ve had to miss a lot of stuff, and I didn’t want that to be the case this time. This was my vacation, and I was going to do it. Before we went to Disney I started the first day of my Medrol Dose Pack, and it was a great decision. Over 3 days we did Magic Kingdom from open to close, Animal Kingdom from open to close, and SeaWorld for most of the day. I was hurting bad every single day, from beginning to end, but it didn’t stop me. I went on every rollercoaster I could, stood on line for a long time so my little sister could meet princesses and characters, and walked the entire time. I would have to take 30 minutes breaks every couple of hours, but my family would wait for me every time. I had to stay in shaded areas whenever it was possible, but my sister literally pushed people out of the way to make sure I had somewhere safe. While we were in Magic Kingdom, I realized that exactly a year ago, I was in the hospital with the worst flare of my life. Six months ago, I was having suicidal thoughts, and just 3 months ago, I really thought that I wouldn’t be able to make it through the vacation. I have had to learn how to change a lot of things in my life because of my illnesses, I have had to make really hard decisions, and I have had to be a lot more grown up than a normal 20 year old girl. But all of the changes, decisions, break downs, appointments, tests, medications, acts of strength, courage, and determination led me here. I busted my butt through vacation, and I had the absolute best time of my life doing it. As always, I never would have made it without my family. I am so incredibly grateful for the amazing memories that we made. And I am pretty damn proud of myself.

A picture from our photoshoot in Nassau, Bahamas.

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