December 2018 – Disney World

So, with new health issues to worry about and painful, swollen sinuses, it was time to get away from it all.

We picked up our flight tickets and Disney World passes from the travel agency then headed out to the airport the next morning. We got there with more than 3 hours to get all checked in for our flight.

Unfortunately, our flight no longer existed.

We scrambled to book a new flight to Orlando, with little help from our travel agency, who were too busy playing the blame game to solve our immediate problems.

We managed to get to Disney World at around the same time we would’ve arrived with our original flight, but our return flight no longer existed either. It was an evening flight which was now changed to a morning flight, which meant we were now losing a whole day off our vacation. We had 4 Disney passes that we were now unable to use.

Long story short, the battle for refunds has begun and a lawyer friend said it would be an easy win in small claims court.

So, it was a rough time getting there. We had a late night dinner which I could not eat as I was too exhausted and sick, then we went to sleep to properly begin our vacation the next day.

Then my sore, stuffy nose became a sore, bloody, stuffy nose. It would not let up for the entirety of the vacation and continued throughout the Christmas holidays two weeks later. I still have some mild symptoms of it today, which I believe was a sinus infection.

I didn’t visit a doctor because it seemed to be getting better, though very slowly. I got home from vacation and thought I’d give it a week and see how it went. Then Christmas came around and it was a little better so I thought I’d wait it out another week. Now here I am still dealing with a little bit of night time stuffiness and occasional speck of blood but it’s nearly gone.

Anyway, during vacation, I felt particularly terrible at night and morning. I’d lay down and I’d become all stuffed up. In the morning, there’d be blood around my nose and on my pillow. I’d take a hot shower and clear out what I could (eventually learning to be very gentle to minimize the bleeding), then I’d start my day feeling okay but not great. By midday, it was like I wasn’t sick at all, then in the evening it all came back.

As far as I’m concerned, Disney World with the family was absolutely wonderful and I managed my health issues, acute and chronic, really well. We saw many sights, went on many rides, ate lots of food, and spent a lot of money. A few times I wasn’t very hungry and at one point a pain in my foot caused me to slow down but I was not a burden. I either kept up with everyone else or lead the way. I wanted to be there and I wanted to see everything. That kept me going strong.

I was always the last one to fall asleep. Near the end of the week. I stood in front of the bathroom mirror, trying to manage my bleeding, stuffy nose. I began to cry. Why do I keep getting shit on? I’ve been living with this disease for years. Now you tell me I have heart and blood pressure problems too? Then immediately after that my nose starts bleeding and it won’t even stop for one day of my vacation? Can’t you just give me a break for one fucking minute?!

But I do get a break from it. Anytime it’s not in my mind is a break from it. Anytime I’m just enjoying the moment, I’m living in the moment, not living as a sick man. All day long, I spent time with my family as a husband and father, not a sick man. Sure, there were moments and reminders, but they didn’t override the joy and fun I experienced.

I had a vacation. It was not perfect, but it pretty damn awesome. And I shared it with the people I love most.

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