Tag Archives: Disney

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.

Rolling Through Disney World with Chronic Illness in Tow

Vacation is over. Obviously, I knew it would happen eventually, but right now life is filled with a lot of, “Ugh. This is so NOT Disney World” moments. I’m not complaining about life in it’s current state (except for that whole ‘I’d rather not have a chronic illness’ thing); I’m simply saying that vacation in Disney World was super fantastic. I thought I would have another “Adventures of Snooki” blog after her travels in Disney World (FYI- Snooki is the name of my wheelchair), but people in Disney World (especially the Disney World “castmembers”) were exceptionally understanding of Snooki and the seemingly healthy looking person traveling in her. There was actually very limited absurdity while in the Happiest Place on Earth. I would like to think the world is becoming more understanding and accepting of those with mobility limitations, but I truly believe that the employees at Disney are just really well trained and able to handle everything. However, because I have a lot of crazy, chronic friends who are planning trips to Disney theme parks or other similar places, I thought I’d share a few pieces of advice gleaned from my time in WDW.

  1. Get over yourself.

I know. That sounds harsh, but my harshness is a necessary evil. Somewhere in the first half hour that I was in WDW I had a moment- one of those awful moments where you can’t help but feel sorry for yourself. For that one awful moment I remembered the last time I was in Disney World. I remembered walking as fast as I could so that I could see everything more quickly. For just a quick moment, I felt sad that life had changed so much. I had to wait on Joe to roll me to the next attraction (self-maneuvering the wheelchair makes my shoulder dislocate), and I was just really bummed that my reality had changed so much. But . . . I was still in DISNEY WORLD! I had a husband that was willing to push me wherever I wanted to go. I had an entire week of fun ahead of me. Pretty much I just had to focus on all the incredible, overwhelming “good” in life, and it wasn’t that terribly hard to forget the little bit of bad. Embrace your wheelchair, your walker, your disability access card, or whatever you need to make it possible for you to enjoy yourself. Get over yourself and just have fun!

2. Take someone with you who has a lot of patience . . . and a strong back.

Since Joe and I traveled with just the two of us, all the wheelchair pushing fell on him. He walked 12+ miles a day pushing a Tiffany filled Snooki. He was not only physically exhausted; I’m pretty sure his patience was tried many times. Since he was pushing my wheelchair, a lot of people would talk to him or ask him questions about me rather speak to me directly. He’s pretty good about keeping a sense of humor about such things, but I’m sure it was frustrating. If you’re going to WDW or any place that requires a lot of walking, make sure you prepare whoever is traveling with you for the massive undertaking they are going to try. Also, be prepared that your “pusher” may run out of energy- make sure they know that’s okay. (Side note- Serious shout out to my husband, he never requested a break from pushing me . . . even though I’m positive his back was wanting a break!)

3. Prepare to hurt.

If you (like me) have an illness that involves chronic pain, that symptom isn’t going to disappear just because you are on vacation. If anything, my pain intensified. Whoever came up with the idea of brick streets in EPCOT’s World Showcase clearly did not imagine what it would feel like riding over them in a wheelchair. I felt like a giant bobble head doll every time we scooted over those streets. Every day I had to consciously push pain into as far of a corner of my brain as possible, because it wasn’t worth missing out on fun!

3.  Make a plan but be flexible.

Joe and I planned each day so that we weren’t starting super early (I don’t function before 10 AM.). We also planned an afternoon break so that I could back to the hotel and cool off. Every afternoon I would arrive at the hotel tired, sore, and overstimulated, but after a couple hours in air conditioning (and a shower- Florida’s heat is ridiculous) I was back to normal-ish and ready for dinner and more Disney adventures. Also, we took a lot of water breaks in the shade. Even though I was in a wheelchair, my hips and knees would be super painful after a couple hours riding. Resting and propping up my feet as needed was a life saver and allowed us to explore longer.

4. Make new friends.

One of my favorite parts of this WDW experience was all the people we had the privilege of meeting. Disability access often meant waiting in a somewhat secluded place with other disabled park goers. The cool thing was that gave us a quiet (and often air conditioned) to meet other people. We met a beautiful retired couple that had fostered over 100 children and had recently adopted a beautiful 8 year old girl. I had lunch next to a lady with a killer sense of humor and laughed with her about the crazy things that happen in wheelchairs. I also met some really impressive power wheelchair parallel parkers. That’s a serious gift. I’m thankful that Joe was pushing me, because I’m not sure my driving skills could maneuver quite so well.

Disney World was fabulous, but it wasn’t without it’s frustrations or just general chronic illness funk. That’s okay. I was still able to have my incredible vacation. I was still able to return to my honeymoon spot with my husband. I was still able to make memories that will last my entire lifetime. Joe asked the other day if I would return to Disney World tomorrow if I had the chance. My response, “I just need a little help getting the laundry done so I can pack!”

Peace, love, and health friends.

Now that I’ve conquered chronic illness . . . I’m going to Disney World!

That’s right, friends, I said “conquered chronic illness.” Okay, maybe I haven’t “conquered” it, but I have at least taught chronic illness a few manners. Traveling with chronic illness is a bit like traveling with a toddler. Some days it behaves wonderfully (you know, like the cute toddler in a restaurant that is engaged in the conversation and not having a meltdown?). Other days, chronic illness spirals out of control into physical and emotional chaos (imagine that same kid kicking and screaming in the aisle of the grocery store). So, basically, I can say that I have conquered chronic illness with the same amount of assurance a parent can say that their 3 year old will definitely behave.

But . . . I have way better things to do than wonder what curve ball my body is going to throw next, so I’m going to Disney World. That means this hot mess express will be chugging through 2 airports, 2 flights, and 4 Disney parks within the next 6 days. I’ll have Joe (who is totally used to my misbehaving illness) and Snooki (the wheelchair- not the reality tv star), so it’s not exactly like I’m undertaking this adventure without help. However, I still have a contingency plan just in case a hip dislocates, or my blood pressure won’t cooperate, or my stomach forgets how to digest food. Basically I’m going to Disney World with books, notepads/ pens, logic puzzles, magazines,  . . . – anything to keep me entertained if my body decides that the entertainment provided is just too much to handle.

Four years ago (this coming June), Joe and I went on our honeymoon in Disney World. It was so incredibly fun, and we were making plans to return before we even left. Then, life happened; chronic illness happened; no longer working happened, and basically this whole crazy, chronic life thing exploded. I remember discussing with Joe that I would probably never be able to go back to Disney World. The first time we went we did everything. We tried every food and every ride. We stayed out late and got up early (okay, not super early but before lunch). And we walked, and walked, and walked in the blistering Florida sun.

Being entirely realistic, that will probably never happen again. Our first trip to Disney together will always be special, but I don’t actually believe my health will ever allow me to vacation with that much intensity ever again. When I believed that we would never go to Disney World again, it’s because I couldn’t imagine myself ever becoming someone who needed accommodations. Obviously that attitude only hurt me and my marriage. The rest of the world truly couldn’t care less if I enjoy Disney World on my feet or via Snooki. However, it’s really important to Joe and I that we recreate that magical first week of our marriage- regardless of if he’s pushing me around or not.

So, in honor of our “second honeymoon,” here are a few ways Disney World will be different this time than it was on our first honeymoon.

Snooki gets to join us. Snooki is my wheelchair, and she’s super fabulous. She tends to get lots of attention and ridiculous situations normally accompany her trips into public. Snooki is looking especially wonderful right now, because I just installed a cup holder on her. Now I can roll and sip Gatorade. That’s right, dehydration, you lose!

Opinions. So many opinions. Because Joe and I have “Disney-ed” together before, we know what we want to do. We have spent the past 3 months making and changing dinner and Fastpass reservations, choosing lunch and hydrations spots, and figuring out the best times to ride certain rides.We both have favorite attractions. (Thank goodness we mostly agree about the most important things to do and see first. If not, this trip could get tense quickly!)

There are breaks scheduled. Even with Snooki joining us, it’s probably not wise to spend hours baking in the hot sun (not to mention Joe will be pushing me most of the time, so he’ll probably need a break too).We’ve scheduled breaks during the hottest part of the day to avoid blistering sun and the cranky people that need afternoon naps as much as I do.

And . . .

Best of all . . .

We have matching t-shirts! It’s true. Joe and I have matching Disney t-shirts for every day of our trip! I know it sounds silly, and it is. But if you can’t be silly in Disney World, where can you? Besides, this will make it way easier to find my Snooki pusher (aka my husband), if he wanders.

Crazy, chronic lives are tough. Marriage is hard work. If there is a way to have fun and enjoy life together, make it happen.  I’m guessing that a week from now I will have stories of Snooki situations, too many souvenirs, and some serious exhaustion, but I will also have done something that I believed impossible at the beginning of this whole crazy chronic journey.

Peace, love, and health friends.

The “real” first post.

On a blog about chronic illness and relationships, it makes sense to share the story of how chronic illness first made an unwelcome appearance into my marriage.

My husband (Joe) and I were married on June 18, 2011. We honeymooned in Disney World (because I will NEVER, EVER, EVER outgrow wearing mouse ears!), and then added 2 extra days in Orland because I wanted to see the Wizarding World of Harry Potter. (Okay, so now we are clear on how much of a nerd I am.) Anyway, it’s the last night of the honeymoon, and we go to bed- completely healthy . . . Hours later (I’m not sure when exactly. I was relatively incoherent.) I wake up in crazy amounts of pain. Okay, I’m talking the type of pain that is so all consuming that you aren’t really sure WHAT is hurting.

**Now, let me side bar here to point out- this was my HONEYMOON! In other words, this was a point in my marriage when I still wore cute pajamas and tried to look semi-attractive at night. I realize Joe was already legally bound to me at this point, but I still, you know, wanted him to think he had wife rather than female beast of some sort.**

So then, my stomach (is that even what was hurting??) decides to release its control over dinner, and I remember thinking, “Oh please, God, don’t let me vomit on my husband. I’m pretty sure that’s not how a honeymoon is supposed to end . . .” So I spend the next little while heaving in the bathroom (and, “Oh my goodness! Is that blood?!?!?”) while my tired and oblivious husband rests peacefully.

(If you are totally grossed out at this point, I promise this is the last post about vomit. Hang with me, please.)

I stumble out of the bathroom and collapse on the floor in something between a faint and an “oh my goodness. Too much pain. I. Can’t. Comprehend. This.” And, THEN, the other half of my wedded bliss awakes, walks over to me, and says, “Are you sick? You should get in bed.”

Even in times of pain and illness and overwhelming grossness, my sarcasm is apparently completely in tact, because my loving reply was, “Do you really think I’d be lying in the floor of a Best Western if I could get to the bed?” I’m ashamed to say that it was at this point I started crying. I have no clue if it was from pain, frustration, embarrassment, or just because I wanted my MOMMY, but I cried . . .

Joe looked at me- I was pale, dirty, ashamed, and crying “wild animal style.” (I’m pretty sure he definitely considered just walking away from the disgusting heap on the floor. Who wouldn’t?) But he looked at me, shrugged, and laid down next to me in the floor. It was in this moment that I experienced something far more magical than anything I had seen in Disney World or HP’s World . . . I still hurt. I still felt disgusting. But I wasn’t alone or scared.

So, friends who live in this world of chronic illness, that’s my wish for your today. I hope somebody will love you at your grossest. 🙂

Peace, love, and health to all.