Tag Archives: Marriage

I can’t say “marriage enrichment” because the term makes me and the husband want to vomit.

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.

Wedded Bliss Can Be Hit or Miss

There was a moment in the first months after Joe and I married that I realized that the whole marriage process had left me completely unprepared for marriage. I was cleaning the bathroom floor in our teeny apartment (Seriously, do males think the toilet is merely a suggestion for their urinary pursuits?), and the absurdity of the whole dating/ engagement/ wedding process hit me. Joe and I had a great time dating. We went to sporting events, festivals, historical landmarks, . . . truly anything and everything we wanted to experience together we did. Then there was the engagement/ wedding time. It was filled with teas and brunches, hair appointments and fake nails, vows and ceremonies. And, essentially, none of those things occur in real life. Real life (at its rawest and most real anyway) is filled with laundry, mystery stains on the bathroom floor, and the never-ending need to prepare another meal.

Don’t get me wrong. Marriage has enough redeeming qualities to make up for the gag-worthy moments. It’s a great feeling to know that your best friend will be beside you as you fall asleep at night or that the person who always makes you laugh will be joining you for dinner forever. I wouldn’t trade all that marriage is in order to get rid of the responsibilities that come along with it. I just realize there is very little leading up to marriage that has anything to do with the actual act of being married.

Before I got married there was a bridal brunch- now there is coffee and Facebook.

Yep. There was a legit bridal brunch in my honor before my wedding. There was a yummy coffee flavored punch out of a beautiful crystal bowl. I wore heels and pearls and wiped my mouth on dainty embroidered napkins. I was fairly confident I had reached the pinnacle of being a lady. Now, I stumble out of bed at the last possible minute I possibly can and still make it to wherever I have to go. I wear an odd assortment of Joe’s clothes (because boy sweatpants and t-shirts are the most comfortable articles of clothing ever). I drink coffee (or I make coffee and leave it setting next to me because I’m too tired to remember to drink it) and peruse Facebook statuses in silence. I don’t talk, and if Joe speaks (or God forbid, sings) I grunt in response.

I was given a beautiful collection of silver, china, and crystal. We use paper towels as much as possible.

When you get married you get a lot of gifts that you will probably never find a reason to use. I remember receiving beautiful crystal pitchers and china pieces and imagining the elaborate dinner parties I was going to have. Yeah, um no. I’m not a huge fan of plastic/ styrofoam plates since they’re far from environmentally friendly, so we rely on a lot of paper towels . . . or anything dishwasher safe.

That beautiful bridal wardrobe is irrelevant in real life.

I have an awesome collection of dresses that I bought during the time leading up to my wedding. I recently loaned all those dresses out for a couple months, and I can honestly say I didn’t miss them once. All those beautiful pastel dresses are just not necessary for my life now. I haven’t had on high heels in years, and it would probably take me the better part of a day to remember where I put my pearls. During my engagement I bought those dresses because that is how I imagined a “real grown up” would dress. Yeah, I’m living real grown up life now, and it’s all about what is clean and what is comfortable.

There were solemn vows and a reverent, “I do.”

Again, don’t misunderstand. I meant every word of the vow I made to my husband. I have every intention of holding up my end of “for richer or poorer, in sickness and in health . . .,” but I had no idea what any of those things meant. I thought sickness was a temporary thing that happened then got better- or that it didn’t happen for a really long time. I thought that people were either rich or poor or somewhere in the middle- not that life went in cycles of relative comfort and then just way too many bills.

In truth, I thought life would keep running along just as it had been during dating and engagement. I knew there would be laundry and meals to cook, but I didn’t realize I would be trying to do those things (with my husband’s help- I’m not insinuating that I’m on my own in all things domestic) with absolutely no energy. I didn’t know that in order to keep up with the speed of our dating lives I would be expending every ounce of vitality and enthusiasm I possess. Life is manageable, but it’s just so very different from what I imagined.
A wedding is a bizarre way to start a marriage. It would probably be more appropriate if the soon-to-be- wed couple spent a week on the clean-up crew of a high school football camp. I mean, at least there would be a little more on the job training for the messiness of life than what a wedding offers. However, because we are all a bit unprepared when we get married . . . that means it’s not just me. I’m not the only one that jumped into the deep end and can barely tread water!

You see, when I became sick after I got married, I was so ashamed. I felt like I had tricked Joe, because I changed so much after he married me. It seemed only fair that I should remain the same person I had been throughout our dating life, but illness took that from me. There were so many times that I have wished I could go back before the wedding and tell Joe all that I know that- at least then he could make an informed decision.

It has occurred to me recently, however, that none of us really know what we are doing when we get married. We all enter marriage with the absolute best intentions. We plan to love our spouse the best way we know how, and we try and fail and try again and succeed a million times on our way to that goal. I’m not saying I will never feel guilty again that I stuck Joe with a chronically ill wife. There will be those days from time to time. I am saying that I have forgiven myself for getting sick and all the ways it has affected those around me. Yes, I surprised Joe by becoming sick (and staying sick) in the first couple weeks of our marriage. But, then again, I probably surprised him a million other ways too.

So, yeah, there have been a lot of surprises after Joe and I have gotten married. I wake up super grumpy. Animated movies make me cry. I get up multiple times during the night to brush my teeth. I only own about three pairs of socks. Joe forgets to close drawers after he opens them. He refuses to sleep under a sheet (but will sleep under a blanket?). He puts ketchup on green beans and doesn’t like dessert (more for me!). Obviously, some surprises are more fun than others, but I’m enjoying our life together- so I’ll deal with the surprises as they come.

Peace, love, and health.

Join us in the Crazy, Chronic Life Facebook support group by clicking the link below and requesting to join the page. (We’re accepting everyone except robots!)
Crazy, Chronic Support for Crazy, Chronic Lives