Category Archives: Disney with Disability

I’m Pretty Sure You Want This Book.

This (link at the bottom) is my book. Okay, technically, it’s Joe’s book too, because he did a lot of work on it. But since I’m the person with the chronic illness and this is a book about chronic illness- well, I’m a little emotionally attached. Just in case you’re thinking you don’t need this book or don’t especially want it, humor me while I make my case.

So, here are the “Crazy, Chronic Reasons Why You (might) Want to Read This Book.”

  1. It’s a beautiful love story. Okay, it’s not exactly a beautiful love story. As a matter of fact, I mention bodily functions that are neither beautiful nor lovely a couple times. However, Joe and I wrote this together. He literally saw my desire to write a book and not only encouraged it- he did a lot of the work. We talked through every chapter together before I wrote it. He physically typed a lot of the book, because my crazy, dislocating hands wouldn’t allow me. We have called ourselves #TeamEarly from the beginning, and this collaboration showcases exactly why. We work together. We laugh together- and, when necessary, we cry together. So, while a book instructing you with how to cope with very public and very projectile vomit isn’t exactly romantic, the love and cooperation that went into each page certainly is.
  2. It’s likely to boost your confidence. Do you want to know why it will boost your confidence? Because as you read through this book and experience our raw honesty, there will be times when you’ll think, “I would never be dumb enough to get myself in that situation.” See? You’ll feel smarter. Okay, seriously, this book talks about embarrassing symptoms that so many of us face- brain fog, incontinence, mobility struggles, etc. Let’s be honest- I’m about as graceful as an elephant changing underpants. I have a long history of blunders to share. I will give you tips to saving face as much as possible when your body decides to be a jerk in the least convenient of places. Personally, I always feel more confident when I have a contingency plan.
  3. People seem to actually like the book. You guys, I have reviews, and they’re not bad. They’re actually, well, great! Even more impressively, to the best of my knowledge I am not related (by blood nor marriage) to anyone who has reviewed my book. You never know when you write something if it will reach your audience in the way you hope. There’s a chance that Joe and I have been drafting and typing our little hearts out on a project that stinks. But . . . it’s beginning to look like it doesn’t. I actually believe we may have accurately portrayed this life in a way that others can relate.
  4. It will make you cool. Okay, there are many words that could describe me, and “cool” will never be one of them. I will never listen to the right music or understand pop culture references. However, illness has made me more sensitive to the needs of my chronically ill/ disabled friends. We have done our best to convey to significant others, caregivers, friends, congregations, and ‘that lady from WalMart’ how to be aware of the needs of others. And, seriously, what’s cooler than compassion? Am I right?
  5. I will appreciate your support forever. Everyone isn’t in a place where they can buy a book. I understand that completely. Please know that every word of encouragement, like, and share mean the world to me. My Crazy, Chronic Life blog audience was the driving force behind this book, and your love and encouragement help me keep my head above water on the hardest days.

Friends, each of you have encouraged Joe and I throughout this process, and we truly appreciate it. (I considered telling everyone that to show our gratitude Joe would be available to sing at the wedding of anyone who buys our book. Strangely, he didn’t consent to that.) So, one more time for the people in the back- my book link is below. Try an excerpt. See if it’s for you- or if it might help someone you know.

Peace, love, and health to each of you.

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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.

A Dream is a Wish Your Heart Makes . . . When You’re Falling Apart

Based on that title alone, I’m fairly confident Disney will never ask me to right lyrics for their next great princess anthem. That’s okay, because my heart is set on writing of a different sort entirely. Want to know a secret? I started dreaming of being an author when I was an awkward high school sophomore (who used to lock her bedroom door and play pretend in order to imagine how my newest story should transpire). But . . . dreams are scary. If I tell people and fail miserably, you’re exposed. Everyone knows that you tried and failed. That’s painful, and I’ve felt more than enough pain in my 31 years.

Why am I telling you this now? Because jumping out on a limb is scary enough- why not ask the blog world to watch?!? I have an e-book! I’m a sort of author. It’s on Kindle only, so I haven’t realized the dream of having a physical book to hold in my hands. It was compiled by Joe, because the sick life is complicated and his help is necessary. It’s not the exact dream I imagined, but at the same time I have a certain awareness that something I’ve wanted for a long time is finally happening.

When I became sick, I suffered the loss of so many dreams. I lost the dream of being a mother. (I’ve been naming my future children since I learned to spell.) I left my dream job as a middle school teacher. The life I intended to live slipped away. However, I’m learning that God in His infinite wisdom places new dreams in our hearts- or in my case, He rekindles old dreams that seemed unattainable. When I look at the series of events that led to this moment, I’m amazed.

I married an author– a legit author with 10 books at real, legitimate presses! (Don’t worry. I don’t even aspire to surpass him.) At the time we married, I thought it was cool and respected his accomplishments. I never dreamed that the most painful part of my life (the whole illness/ disability thing) would lead to me wanting to write again. I could have never fathomed that my super author husband (Is that his new super hero name? Super Author!) would encourage me to pursue this inkling of a dream. He’s the person who encourages me through my process (which includes a lot of procrastinating and Netflix) and gives me pep talks when I complain that I’ve sold exactly 2 books in 2 days. He believes in me, and he legitimately knows what he’s talking about (in regard to writing, Tennessee football, church history, and making baked potatoes- beyond that, his advice isn’t worth as much).
While I’m deep in the process of writing completely new material, I’ve released an e-book of my blogs as well as some new material. Why publish previously written blogs?
1. Blog readers have asked for an offline version of blogs to give as a gift to newly diagnosed friends. While this isn’t a hard copy, it’s easily purchasable and able to be sent to anyone with an e-reader or smart phone.
2. This gives me a practice run before my new material is ready for publishing. There have been some serious hiccups in this process, and I’m hoping to get those out of the way now- before my new material releases.
3. If sales go really well, I might be able to buy a Diet Coke at Disney World next year.
Ultimately, I’m new to this process and learning as I go. I’m touched and honored that anyone would purchase my writing. It’s an odd feeling to have someone purchase something that contains some of the rawest parts of your heart. So, thank you for reading my words. Thank you for sharing my heart. Thanks for letting me realize a new dream I never believed could happen.
Peace, love, and health, friends.

Sorry. This post wouldn’t be complete if I didn’t include a link to the book. Thanks for understanding my shameless self- promotion.

Preview my book HERE, please!

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.