Tag Archives: Disney World

We’re Going to Disney World- and I have to take EDS with me.

Y’all, I’m going back to Disney World in a few days, and I am beyond excited. Okay, at this exact moment, I’m beyond stressed. I hate packing. I hate preparing to leave. I’ll sum it up like this- Tonight’s dinner came from Dollar Tree, because I was too tired to walk through the grocery store. (I bought frozen vegetables. I feel like I deserve a medal for not deciding tonight’s dinner would be peach rings and circus peanuts.) I’m trying to rest, so I’ll feel decent once we get to Disney. But, seriously, who has time to rest when they’re preparing for a trip?

I’m going to let all of you in on a secret. Last year’s Disney trip wasn’t exactly stellar. Don’t get me wrong; Joe and I had a great time. But I sort of fell apart. My neck developed new pain (I didn’t think that was possible) so severe that I actually lost vision in one eye for a while. That whole situation never fully resolved. (Although, both eyes work again, thankfully.) I missed an entire day of fun, because I couldn’t keep food down. I’m guessing my problem was a combination of dehydration and pain, but I’m not entirely sure. The skin on my forearms literally fell off, because EDS skin and vinyl arm rests on wheelchairs (with the addition of 100 degree Florida heat) are apparently opposed to one another. In short, I was a mess.

In order to go back to the Most Magical Place On Earth, I’ve had to make a few changes. And since a lot of my blog readers are also living the chronic life, I thought I’d share my changes in hopes they’ll help someone else enjoy their vacation with relatively few medical meltdowns.

I’m leaving Snookie at home.

If you’re new to the blog, you might be wondering why I’m leaving my (very unfortunately named) child at home. Snookie is my wheelchair, and she’s basically been my bestie for the past three years. BUT, I’ve outgrown her in terms of needs. (Yes, I can still fit myself into Snooks.) Snookie, though fabulous, is a very bumpy ride, and Disney World tends to have rough pavement anyway. My neck and back are no longer well-suited for the bumpiness of a manual wheelchair. (I’m sure Joe’s back is duly grateful.)

Instead, I’m renting a scooter for the first time. I ran across an amazing company called “Disney World Scooter Rental” that will deliver a scooter to my hotel and provide on-site user training (Yikes! You can expect to see a video of that hot mess.). I came across DWSR when I saw a post they had made defending their clients who need to use mobility devices in the park. They were responding to a comment on their site about how those with disabilities should just stay home. (People are jerks sometimes, am I right?) Anyway, DWSR replied to the comment in defense of all of us who deserve to enjoy their vacation just as much as our able-bodied counterparts. I instantly fell in love with the company, and I am excited to try their services. They’ve already been awesome at answering my questions when I needed to find a scooter model to rent that wasn’t difficult on my upper body to maneuver. (The scooters that require you to push a button with your thumb to accelerate cause my thumbs to dislocate.) I’ll leave a full review after the trip, but I’m expecting this to be a great experience.

For those of you wondering, the new wheelchair will be named after another super obnoxious reality star- Abby Lee. (Although, I think the real AL is serving time in prison now, so maybe I should name her Free Abby Lee instead.)

Amazon Prime delivers to Disney.

I love Amazon Prime. I mean, it’s shameful how much stuff I purchase via Prime. I have no clue why this hasn’t occurred to me sooner, but I can order stuff through Prime to be sent to my hotel! Why is this so exciting? Last year, I struggled with hydration. Yes, you can get free water at any counter service restaurant in the parks. However, my body isn’t patient enough to wait until I get up, get ready, wait in line for the bus and security, and actually get into the park before I start hydrating. Not to mention that water isn’t exactly the gold standard for hydration when you’re medically complicated. (Electrolytes are important, kids.) My problem last year was that I would tell Joe, “No, I’m fine. I can finish my water bottle from last night rather than buy a Gatorade for $4 before we leave the hotel.” Then, I would get to the park and already be dehydrated, tachycardic, and nauseous from the Florida heat before we started our day.

This year, I’ve ordered water, Gatorade, and breakfast bars for our hotel room. I contacted Disney to make sure this is okay, and they sent me the address (and a warning that I might have to pay a $5 handling fee- basically the cost of 1 gatorade).

For those of you keeping score, that means I’ve found an affordable solution to my Disney related hydration issues as well.

Hot/ Cold packs- duh.

I am nothing without my heating pad and ice packs. I have no clue why it didn’t occur to me to take them with me on vacation. Last year, I was trying to “ice” my head and neck with the condensation on my Disney mug. Not exactly helpful. This year, I’ve bought a few hot/ cold packs (that can be frozen or microwave) to take with me. I don’t plan to take them with me into the parks- although that could happen. My plan is to use them in the evening when I’m trying to melt off some of the pain of the day. Again, I’m not sure why I didn’t think of this sooner.

I’ve addressed mobility, hydration, and pain management issues from last year. It’s not a perfect plan, because the reality of vacation with a chronic illness is that anything can happen. However, I’m learning every year. Joe and I love Disney World, and I don’t plan to give up our trips without one heck of a fight. If you want to join us on our trip, make sure you like my blogger page- CrazyChronicLife We plan to do some live videos of the things we see and do at WDW. I’ll upload pictures, videos, and live events to the page.

Also, it’s a little early to be spilling these particular beans, but Joe and I are planning to release our co-authored chronic illness guidebook as soon as we return from Disney World. I’ll give more details as we get closer to the release date, so, for now, just join us for vacationing fun.

Peace. Love. Health.
And, oh yeah, Mouse Ears.

T-5 Days Until Disney World!

I woke up to one of the sounds of summer this morning; Joe was singing. (Let’s all have a brief moment of reverence for the loss of my quiet morning routine.) He is a morning person, and I’ll be honest,  I think God’s sense of humor has never been more evident than it is in the fact that I married a person who sings in the morning. Ugh. All the ughs. All griping aside, the sounds of summer mean two things. 1. The college semester has ended, and Joe is home for the summer. 2. It’s time to go to Disney World. (I promise- I’m really excited about both things.)

We are five days away from going to Disney. Joe is totally packed, and I have refilled all my meds- so essentially we’re ready to go. (Yes, I realize I have to pack clothes, as well, but seriously, Joe would rather have me medicated than wearing clean clothes.) I’ve already written about the preparation process of Disney and general advice (Here.), so I’ll spare you the monotony. However, I want to share the pre-vacation prep schedule with you, because I know I’m not the only one in our community who deals with this.

1. Packing. I hate packing.

Joe is totally packed. I don’t even have enough clothes to be decent for a week. Here’s the struggle. First of all, why are women’s shorts so indecent? Don’t get me wrong; I think women (and men) should dress however they’re comfortable. I’m just not comfortable in shorts that’ll make me feel like I forgot to wear any. Also, there’s the whole wheelchair situation. (For those of you new to the crazy, chronic game, my wheelchair’s name is Snookie, and she’s infinitely more fabulous than I’ll ever be.) Some shorts are just not meant for sitting, and my body was clearly not meant for standing. It’s a colossal conflict of interest on the best days. So, yeah, I have to buy shorts within the next five days in my teeny tiny town. Ick.

2. I’m in energy save mode.

My house could stand to be cleaned. Some of the clothes Joe packed could use ironing. You know what? It’s not happening unless magical fairies bestow me with their abilities. That’s okay. It really is. I’m doing everything I can to reserve my energy for the vacation I’ve been making payments on since last July. I’m sleeping 10+ hours. I’m napping when I want to. I’m generally refusing to do anything that I don’t absolutely have to do. Fortunately, Joe is totally cool with that. He actually requested that I save as much energy as possible, and I’m grateful for the suggestion.

3. Planning for the worst- hoping for the best.

Let me be clear. I have no plans of having a health meltdown while I’m in Disney World. Clearly, Joe and I wouldn’t plan a vacation that we didn’t think I could handle. However, I’m trying to be practical. I’m packing books in case I don’t feel like leaving the room one day. I’ve taken every possible precaution for general comfort. (Here’s to hoping my body doesn’t throw a huge EDS tantrum!) I have rescue meds, cool packs, KT tape, and anything else that might be useful. I’m not being negative. I think my week at Disney will continue to be my favorite week of the year. At the same time, I don’t want to be totally unprepared for something that I knew could possibly happen. Besides, who really wants to buy a $9 bottle of aspirin in the most magical place on earth? If my body decides to throw a curve ball, I’ll be prepared (unlike my Braves . . . smh).

I’m excited- can you tell? I can hardly wait to go. I’m aware that it might not be the type of perfect healthy people imagine, but I can almost guarantee that it’ll be Crazy, Chronic Perfection. At this point, that’s all I ask. If you want to follow me on my Disney journey, feel free to friend me on FB (Click here- be my buddy!). I can also guarantee that I’ll upload pictures all day every day, and I’ll try to keep you informed on the whole traveling with a disability thing too.

Hugs to each of you always!

Peace, love, and health.