August 18, 2014

Lupus & Theme Parks - Part 1: Walt Disney World


Only FOUR days and counting til my wobbly legs land in Walt Disney World! YES, that magical land full of glamorous princesses, perfect princes, dastardly villains, and mystical creatures spun from imagination! I'm pretty sure it's going to be absolutely spectacular but there's just one little wrench that has a tendency to kick all our gears in thee very worst way...LUPUS!

I can't think of how many times I've unknowingly set out for a day of greatness only to have lupus tear it down into tiny little shreds of soul-sucking pain. THIS time will be different though, I can feel it! I'm not exactly feeling my best health-wise at the moment so I know I will have to take extra precautions and numerous steps to ensure I enjoy my vacation to the fullest with minimal kickbacks from Sir lupus.

Thee awesome thing about social media is the power of communication! You can literally talk to just about anyone with a few clicks of a button. That is how I met thee fantabulous lupus brother of mine, Sean Hodgdon all thanks to Twitter! Although we both share the same disease, we learned that we have many other fantastic things in common...one of which is our undying love for all things DISNEY! He loves quirky Donald Duck while my all time favorite is none other than thee diva-licious Ursula!

Since I haven't been to Walt Disney World since I was thirteen, Sean offered to share his 'Lupus Disney Survival Guide' with me, and I in turn am sharing it with you! So grab your mouse ears, and hold on tight, cause here we go!
Here's Sean in Lupus Warrior
action serving Mickey Mouse realness!

Tip #1: Use Sunblock! Sunblock and sunscreen are two entirely different things so make sure you choose whichever one that works best for your skin, is high in spf AND has a good uva/uvb rating. I like Neutrogena Ultra Sport Sunscreen because it has an spf of 100+ as well as a wide spectrum of uva/uvb protection! The sun is often a horrible culprit causing rashes, burns, fatigue, and can actually increase the lupus activity in our bodies! Make sure to pack extra sunblock in your backpack and reapply every 2-4 hours. Wearing a wide brimmed hat and protective clothing is also a huge must for sun protection. Try wearing light cotton apparel, it attracts less sun rays and allows your skin to breathe during the summer season. If necessary there are also companies like Uniqlo that offer affordable UV protective clothing!
*Remember Walt Disney World is in sunny Florida! You're going to need all the sun protection possible to avoid serious lupus casualties. Extra tip: Bring an umbrella/parasol to help keep harmful sun rays away from your skin!

Tip #2: Hydrate! While traveling, especially during the summer season it is easy to forget the importance of drinking water. We often forget that while having a soda or juice our bodies are not getting the necessary fuel that it needs to keep from dehydration. It's super important to remember to have our mandatory 8+ glasses of water a day! If it helps, get a snazzy water bottle that you can refill. Throw some fresh fruit slices/mint in for a fresh twist, or pop it in the freezer overnight to enjoy it chilled throughout the day. If you notice yourself feeling faint, slightly sluggish, or having frequent headaches ask yourself if you've had enough water for the day! Trust me, you don't want to be caught fainting at a theme park due to dehydration! Notice the signs and HYDRATE often.
*All food kiosks will give you a cup of ice water for free when asked, be sure to bring your water bottle so you can refill it throughout the day as necessary. Extra tip: Keep an electric/handheld fan and a spritzer bottle full of water to help keep your temperature nice and cool!

Tip #3Accessibility! To wheelchair or not to wheelchair? That is the question! It's estimated that one will spend about 10-15 walking miles a day at Walt Disney World. For a lupus patient, that can be a serious complication. First things first, make sure you are wearing comfortable shoes WITH cushioned insoles and arch support. Insoles can easily be found in your local drugstore. It is completely okay if you feel the need to rent a wheelchair or mobility scooter. Traveling within a theme park requires immense amounts of energy which for most of us is quite challenging. Having a wheelchair/scooter will help to lessen the chances of being overwhelmed by fatigue or over-exertion. You do NOT want to come to a point where you collapse because you were too "proud" to accept help when needed! It's better to be over-prepared than found lacking. We already know the repercussions of doing too much. Let's listen to our bodies and treat ourselves with kindness. Wheelchairs/mobility scooters can be rented directly from your Disney theme park ($12 daily, $10 multi-day. For excess info, see here). Availability usually runs out by midday so make sure to get one as early as possible. There are no reservations allowed, all chairs are first come first serve.
*If you don't want to chance finding an available rental wheelchair/scooter from the Disney theme park, a great company that has exceptional accommodations is Walker Mobility, at only $30 for the 1st day and just $5 every additional day it's extremely affordable AND they drop it off at your resort and pick it back up once you're done! Walt Disney World has a DAS (Disability Access Service card), however this does not allow line-skipping. If in a wheelchair/scooter, personnel located at guest services lobby can direct you as to how to acquire one. Extra Tip: Non-disability Fast Pass+ is free so make sure to register for it prior to your trip. Disney World Water Parks allow free rental of wheelchairs, Valid ID is required.


Tip #4: Know Thyself! Not only is it a famous quote from Socrates, it's also a necessary rule for us lupus patients. No one can judge your body better than YOU! Know your limits, what your body is capable of, and respect it! Don't "push past the pain." That will only result in more pain! Which is likely to result in a lupus flare or worse. Before embarking on a trip to a theme park such as Walt Disney World, discuss your upcoming trip with your doctor/rheumatologist. Do some research to make sure the featured rides will not aggravate your joints.
Sean says, "Walt Disney World is a very disabled friendly theme park which is designed to provide family entertainment and fun for all ages, it is not an amusement park full of crazy scary rides most likely banned by any rheumatologist with a pulse!
A huge part of knowing thyself is to recognize when you need to rest! Take breaks often. Don't be afraid to let your family/friends know when you're feeling tired and need to recover. Be honest! They're not mind readers. They won't know you need to stop for a moment if you don't speak up and tell them. During the summer park hours are longer.
Sean says, "If you start your day at Walt Disney World in the morning then it's best to head back to your hotel/resting place around noon for lunch. Take as much time as you need to recover, you can head back to the theme park if you're up to it after lunch and then around dinnertime return to your hotel to recuperate for the next day. If intending to experience nighttime entertainment, it's best to have breakfast in/near your hotel then head out around midday."
*Take each day one step at a time. Find out what method works best for you and stick to it! Remember, each of us experiences lupus differently. What works for one may not work for all. So take bits & pieces and learn what helps you most! Extra tip: I like to carry long lasting medicated spray by IcyHot/medicated pain bandages with me at all times while traveling just in case I get some muscle/joint pain that's tough to relieve. This way I don't have to worry about the drowsy side-effects from taking prescribed pain medications while on-the-go!

Tip #5: You Are What You Eat! I know we're on vacation and indulgence is often encouraged, but let's also be smart about the food we are putting inside of our bodies. It's all about balance! It's okay to have a pizza here, a burger there, so long as we are also eating healthy amounts of fresh fruit, veggies, and hydrating with water. Look for foods that have naturally high anti-inflammatory percentages like pineapples, blueberries, carrots, most dark leafy greens/baby spinach, salmon (also spices like garlic, cayenne, ginger, turmeric. Eating generous portions of foods in this category can help to alleviate inflammation in the body which is often caused by lupus activity. To discover the anti-inflammatory rate of your food, see here.) Walt Disney World also allows you to bring your own food inside the park so if you have special dietary needs don't fret! You will find a variety of dining options depending on your personal preference.
* For special dietary needs/allergy information please see here. If it helps, try packing a few light snacks in your backpack for moments when you need an energy boost. Trail mix, nuts are great for that!

Bonus Tip: Here is a printable Disability Accessibility Map for tips, tricks, and visual pointers on how to make your way around the Magic Kingdom park according to your needs.
THIS can be YOU too! Bahahaha!

NOW you are ready for Walt Disney World! Don't overwhelm yourselves with the need to SEE everything. Relish the moment, relax often, and enjoy yourselves. Make a checklist of the things you want to see most, plan to succeed and check your list twice! Was there something you didn't see mentioned here? Have tips of your own you'd like to share? Please post them below, I've got FOUR days to learn all I can before the big day! Remember, sharing is caring. By sharing our experiences with one another, we can help others to succeed. Life with lupus CAN be enjoyable, preparation is key!


P.S. Special thanks to Sean Hodgdon for providing me with all these super helpful Walt Disney World tips, information, and links. Stay tuned for the next #LupusChat, taking place on Sunday, August 24th at 3pm eastern time. I'll be live-tweeting straight from Disney World!

8 comments:

  1. Thanks for sharing this info Tiffany! I love Disney and travel there yearly. But I must say it is a danger zone for Lupus patients. During my travels 2 yrs ago I was walking with my husband and kids in the park and Lupus reared it's ugly head. My feel swelled into balloons, and the capillaries in my legs started to burst. The pain was completely unbearable and I literally could not make it out of the park. As everyone gathered around, I became so humiliated, how could this happen to me? and why didn't I know better? My husband got me a wheelchair and they had to wheel me out of the park. My kids were so mad that our vacation was ruined, as I had to spend the rest of the vacation immobile in bed at the hotel. A word to the wise, know your limitations!! I now wear super comfortable shoes and limit the time walking in the parks (and anywhere else). This still happens all of the time, limiting my activities like driving, working and just living my life. It's so frustrating! Thank you Tiffany, for shedding light on Lupus and traveling. Be careful on your journey to Disney, I look forward to your next post :)

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    1. Thank YOU for sharing your travel & themepark experience Bonnie! I am going to write a follow-up to this post to share some photos from my vacation & some of the steps I took to help keep me from flaring. Try as I did, I still ended up in a huge flare, lol! The weather in Florida is HOT & HUMID, not a good mixture for lupus patients at all! However, I did enjoy myself, and I rented a scooter for the days I was there. There are many things I learned on this trip. I actually never made it to Disney, we did Universal Studios instead. Think I'll be doing Disney in Cali this November so definitely will be using all of these tips plus yours! I look forward to reading your future comments here on the blog. Come back again soon!

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  2. Great tips. I wish I knew you were there Tiffany. I would have come over to see you. That is only an hour away! Miss you.

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  3. Thank you for posting this.

    My wife is living with Lupus (and it is kicking her ass). Last October (2013) we took our two boys to Disney for the first time. Knowing how bad things can get we planned ahead, and if their is any advice that I can give any of you who suffer with it.....it is PLAN AHEAD.

    Luckily my parents live about an hour away and they got us a loner wheel chair from their church....that chair was a God send!!!! We didn't stay on Disney property, we opted for a place just outside downtown Disney which gave us 2 bedrooms, 2 bathrooms, kitchen and living room (and was a lot cheaper). We went for this place, with the thought that if she got a bad flair and became sick she would be comfortable in something more then just a one bedroom (cramp space Disney room). It also afforded us to cook special meals for her (as she also has Lupus Enteritis/Serositis).

    We found that going to the parks later in the day (starting at 12) was better for us and afforded us a longer stay in the parks each day, opting for the indoor air conditioned rides during the mid day hours (temps in October were around 90 to 100 deg).

    We had a cooler lined backpack filled with cold waters and we took it easy. She began to get sick a few days in but we just slowed our pace (increased meds) used the wheel chair (even though she hated it) and you know what.......

    We had such a great time, even with the few times she got sick, it was one of the greatest vacations we ever had!

    As far as Disney goes, they have made some changes (we found out while there) and it is a big one for anyone in a wheelchair.....you wait like everyone else, so if the line goes outside....you wait outside and when you get close to the start of the ride they bring you to a special area. I mention this because as you all know, limiting your sun exposure is 100% necessary. I would suggest letting the Disney staff know so that your loved one can get inside ASAP while you wait on the line. Disney does a great job when it comes to the parade, fireworks and special events for people with wheelchairs and frankly it actually made it more of a pleasant experience as well.

    Again, KNOW YOUR LIMITATIONS!!!! If your not feeling well don't try to hide it, tell your spouse / family and alter your schedule. Be mindful of when you go, temps don't start to get into the 80's until November, November to April may be the best time to go. Speak to your doctors before going, it may be a good idea to have steroids on hand in case a serious flair rears its ugly head. Be careful of diet restrictions, salt intake and tell the restaurant staff.

    Most of all, I hope that if you are reading this, you get the chance to go and enjoy the Disney magic!!!! .....We can't wait till we go again (2015) for Christmas!!!

    Feel Better!!!

    Mike

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