Tag: type 1 diabetes

An Argument for Spoons

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I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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Throwback Thursday: What Brings Me Down – Thursday 5/18

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and/or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)

I often refer to spoon theory when it comes to breaking down the mental side of living with a chronic condition. If you aren’t familiar with spoon theory, it’s basically how much energy I can devote on a daily basis to all aspects of survival. E.G. diabetes, working, parenting, etc.

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Most days, I fortunate to have enough spoons to complete my daily responsibilities. Some days, I’m pulling the energy from my ass and I barely make it through until my child’s bedtime. I won’t bother opening a bottle of wine on those nights because that would require me to 1) open a bottle and 2) calculate the effects of one 4 oz glass of wine on my current blood sugar with the amount of insulin I have on board. (See, not worth it.)

The most trying days are usually when I can’t seem to get my toddler and my blood sugars on coordinating breakdown schedules. Bean seems to know when mommy needs juice or a snack and it’s precisely when the whining starts. Usually, my husband is around to soothe the toddler while I retreat in my haze. But, since lows happen whenever they may, sometimes we are at the store, in the car, anywhere inconvenient.

The worst are the sustained lows that take forever to recover. I often feel like I can’t address my daughter’s concerns or problem, no matter how trivial, if I’m too busy pulling myself out of a low.

And I get it. Taking care of myself means I’m a better parent. No one wants a car crash. She’ll understand later. But there is something disheartening about listening to your child cry while waiting for those numbers to creep up. The screams are louder. The insatiable hunger is more intense. The urgency is greater but I’m at the will of my own body’s response. It’s unnerving.

I usually end those days with -3 spoons left at my disposal – usually sitting on the couch aimlessly flipping through social media or watching recorded television. And those spoons don’t come back. I can’t bank them and save them for a bad day. I start the next day with the same amount of spoons as the previous day. Rinse. Repeat.

Not all days are like this. Most days, my daughter is a gem and I have great support at home. Most days, my blood sugars behave. Most days, I have spoons to spare. The challenge is not focusing on the days I lose all of my spoons, but it’s hard to just not give a fork.

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Blame it On The D

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I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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The Blame Game – Wednesday 5/17

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

I feel like this topic could be an extension of yesterday’s post. After all, isn’t the crux of the whole healthcare debate whether or not we made some bad life choice and therefore got diabetes as a result? The moment I mention I have diabetes, the questions start. Is it bad? Can you eat that? Why don’t you just exercise more? Why aren’t you fat?

The questions were more prevalent when I was pregnant with Bean. I remember going to an open interview event for local doulas. By the time we got to the meet and greet portion of the afternoon, I experienced a whole lot of side-eyes and strange questions from a group of women supposedly interested in lifting each other up. This wasn’t to say all of them were like this – the two who had worked with T1 patients at my hospital just weren’t available on my due date.

I had meet & greets awkwardly cut off because I was apparently delivering at the wrong hospital in the area (it has a level 4 neonatal unit and is one of the best children’s hospitals). I wasn’t really high-risk (pretty sure diabetes classifies you as a high-risk pregnancy). I probably didn’t love my MFM and I should try a family practice physician instead (um, no, I love my MFM because she lets me do what I want and family practice would just refer me there anyway). Oh, and the kicker – is my child going to have diabetes too? (Sigh, no. She has just as much of a chance of developing it as your children do.)

Needless to say, I didn’t hire a doula and the experience soured me to ever seeking out their services for any future pregnancies. There isn’t anything wrong with wanting to use a doula during the birth process, but I didn’t see how she could have helped me in my unique situation. You could see it during the meet and greets; the minute I mentioned I had a high-risk pregnancy, the shields went up.

I don’t blame them for being scared to take me on as a client, but I would have appreciated the honesty over the judgment. A simple, hey, y’know, not sure if I’m the gal to work with you because I don’t know a whole lot about your condition would have worked better than doubting I actually had a condition.

Also, now I have this song stuck in my head…

Young and Sick

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I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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The Cost of a Chronic Illness – Tuesday 5/16

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

Alternate title: how to piss off the entire diabetic online community on a Tuesday morning. (#thanksjen)

It’s no secret that having diabetes is expensive. It’s also no secret that no one in public office seems to understand that chronic conditions are usually the result of drawing a genetic short straw. I mean, check here, here, here, and here for examples from our elected (and appointed) officials.

For me, it’s the difference between being a stay at home mom, freelancing or working part time, or being a full-time working mom. I have a job with rare, excellent coverage and I have little to no complaints about my medical benefits. I have both individual and dependent premiums covered 100%. (I pay for it by not getting annual raises and a relatively low wage for my job description – but, win some, lose some.) I often go through scenarios where I opt to pull Bean out of daycare because I don’t think it’s worth my paycheck – then I realize that I’m probably also saving about $1200/month by getting insurance from my employer. With the legislature now rolling toward a repeal of the ACA that would effectively double the cost of any individual insurance plan for us, I will be staying at my job until I’m 70. In lieu of paying for individual medical insurance, I’d like to retire comfortably, save for an emergency and Bean’s college fund, pay off our mortgage, stay out of credit card debt, and a litany of other things other than a new iPhone every year.

 

How insurance companies see me.

My voice is one that Congress needs to hear the most. My experience as someone who is young and sick differs greatly from someone approaching the Medicare age. I am a middle-aged adult in the middle class with an invisible illness that requires high-cost, around the clock maintenance. My income disqualifies me from most drug rebates and assistance programs. However, I don’t just have $10,000 per year lying around. Obviously, we are smart enough to cut non-essentials to keep the insulin flowing, but at what point do you deem retirement and fiscal responsibility a non-essential?

But, if you listen to news coverage or our public officials, our stories are seemingly left out of the conversation. I’ve been trying to think of ways the health care conversation would be different if the “young and sick” had seats at the table. Several things would need to be accepted beforehand:

  1. That not all chronic conditions are the result of lifestyle choices.
  2. That medical costs not only are a drain on those on fixed incomes later in life, but also hinder the choices young people make about their futures.
  3. That those younger will effectively pick jobs or careers based on benefit packages offered by an employer.
  4. That chronic conditions don’t benefit from catastrophic coverage alone.  
  5. That a majority of Americans are one diagnosis away from medical bankruptcy.

It’s hard to get anywhere because the current conversation revolves around Americans obtaining affordable health insurance and confusing it with getting affordable health care. Until we can accurately address the rising costs of medical care with our legislature, we will continue to fight the wrong battle. Have you considered looking up the Diabetes PAC?

Diabetes is a Cranky Toddler

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I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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Diabetes and The Unexpected – Monday 5/15

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

We hear the narrative from a variety of sources – Control your diabetes better with XYZ diet. Avoid complications and medications with better control. Your diabetes is out of control. You have great control of your diabetes. Your fetus depends on having the ultimate control of your diabetes.

Of some of the most candid advice that I’ve read in the diabetic online community, what has stuck with me the most was this: “Diabetes, by definition, is not something we can just control. At best, we can only manage it and hope for the best outcome.” So really, diabetes is a cranky toddler.

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No, really. In the present moment, there is no better comparison to diabetes than dealing with a toddler who is in serious need of a nap. Have you ever tried to reason with a fussy toddler? It’s damn near impossible.

I mean, I can try to negotiate with diabetes. Just a few more units of insulin will bring you down… No? How about a new infusion set? I can attempt to redirect diabetes. If I go for a walk, maybe I can distract this high blood sugar from escalating. I can punish diabetes. Only a 1 unit correction? No way! Rage bolus, activate! I could also ignore diabetes. Oh. 250 mg/dl? Meh.

The reaction is exhausting and leaves me wanting a nap, or a beer, or both. But deep down, I know that this sleepless, screaming, tantrum-ing reaction is temporary. A phase or blip in the grand scheme of things. Addressing the problem with this mindset often helps bring in some much-needed perspective. My diabetes isn’t always like this and sometimes there is no real reason for the less than perfect blood sugars.

Now, if you want something real crazy, you can have both a toddler and diabetes, like I do. This post inspired by the fact that my kid has skipped her nap for the last two days. Oof.

Happy New Year

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<blows dust off blog>
<coughgagcoughhack>

If I’m blogging, it must be a slow work day. So, you can understand why I haven’t blogged in a while, right? I mean, I could resolve to blog more for the new year, but resolutions are usually broken by mid-February and I don’t like the sound of that.

There is quite a bit going on, all-inclusive, featuring my health and the health of others, dance, my closet (ha!), my family, and spending habits. I spent the last half of 2016 rather lost and I didn’t want to write meandering diatribes here while I figured my way around them. Some might say I’m still lost, but I’m enjoying the scenery a bit more.

I took the mantra, “only write when you feel inspired” a bit too seriously. I had blips of ideas for blog posts during that time, but never got around to writing them. Also, joining a competitive dance team eats up whatever spare time I may have left after my day is done.

I’ve been following the D-community on Twitter to keep a faint pulse on what is happening in that part of my world, but I’m not as in tune as I once was. There is quite a bit going on, so me keeping a faint pulse on the news is more like sitting in a soundproofed room with a rock concert occurring next door – you can still hear the bassline. My main interests have been (now definite) healthcare dismantling reform and insulin/supply costs. So, see… rock concert.

Like most people do, I set up some goals to accomplish during this year. As I was finishing up listening to this week’s edition of Pantsuit Politics, the hostesses closed out the show by sharing their assigned Word of the Year. One hostess has chosen one word to define the entire year ahead of them and then makes goals or lives her life with a focus on that word. For example, one year’s word was “Simplicity” and the goal was to cut out unnecessary items from life. Given my list of goals for 2017, I’ve decided to chose a word myself: “Sustainability.”

The word sustainability automatically triggers a lot of “green” and “eco-friendly” practices and memes for people. This was part of the reason I picked it, but I’m not in the mindset to fall off The Grid and live off the earth alone. (I wouldn’t survive long.) But, can I change things in my life that will sustain my dance hobby – like stretching regularly and becoming more flexible? Can I sustain my income by not shopping as often or dropping stupid purchases? Can I sustain my health by drinking more water, finding a new endocrinologist who I actually like,  and reaching out more to others with my health condition? Can I sustain my relationships by dropping a line to an old friend or having more date nights with my spouse? And yeah – moving toward a less “plastic-dependent” lifestyle and whatnot.

So my plan for this blog is to try and document my year with this word, which, I know, is a bit different than the original premise of being a “d-blog of a dancer.” But, I still hope you find this spot on the internet entertaining and worth reading, even if I’m not dancing as much.

Disney with T1D – Food, Beverage, and SWAG Boluses

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Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Posts: Where to Stay, Packing List Part 1 and Part 2, Traveling Tips, Navigating the Parks, Disability Access Cards.

I have a love/hate relationship with the food at Disney Parks. Food costs aside, this is probably one of the most frustrating aspects of planning a Disney vacation. But, there are ways to enjoy the culinary offerings in the Resort without blowing through a vial of insulin. Here are things to be aware of, plus helpful alternatives.

Disney with T1D - Food, Beverage, and SWAG Boluses

First, what’s a SWAG Bolus? “Scientific Wild Ass Guessing.” A term of endearment I’ve picked up from the DOC, which essentially means carb counting is futile and I just need some form of insulin on board. Correct later.

This is usually how I get by in the Parks because Disney, as accommodating as they try to be to special diets, does not provide Nutrition Information, including carb counts, for their restaurants. Anywhere.

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Whhhhhyyyy are there no carb counts???

This makes it sound like eating at Disneyland is a crapshoot, right? Kind of. In Disneyland, bread is still technically bread, garden salads are still lettuce and other veggies, a cup of fruit is just that. The Mouse does not inject extra carbs in places normally not found just to mess with us. (How’s that for a visual?)

There are two strategies to take: a) Don’t worry about it too much and the excess of carbs and treats will be balanced out by the amount of walking done (because it’s a vacation) or b) go back to basics on learning about estimated portions and be as close to the perceived normal as possible. Keep in mind that this is still a vacation with various routine changes to consider – so the best efforts could still be thwarted. (Sometimes roller coaster BGs just happen.)

There are a few blogs and websites out there to help. Since eating low-carb and gluten-free have become almost diet staples these days, these types of accommodations are readily available.

Here are a few pages I stumbled upon: Eating Low Carb in Disneyworld | Portion Control with Hands | All Ears.Net Type 1 with D (older) | MyFitnessPal (lots of sweets) | Gluten Free Options in DL

Some general advice:

  • Try not to stress about wild sugar control while here. Obviously, be vigilant about treating lows when they pop up, but it’s easy to let the meal planning overtake the reason we are here – a vacation.
  • Bring in your own meals/food. Pack sandwiches which have been pre-carb counted. Or…
  • Eat outside of the Parks. While the Disney food is novelty, there are a ton of chain restaurants (with nutrition information available) on South Harbor and Katella. Escape and go eat… probably for cheaper. Especially if the crowds are insane.
  • Seek out items you know. Like chicken caesar salads. Or a grilled cheese sandwich. Vegetable Soup. A Turkey leg. There are plenty of recognizable food items available in the Resort that don’t require strange math equations. 
  • Indulge in a treat here and there. I’ll cover a few “bolus-worthy items” below. Things like this keep me sane and remind me that I’m on vacation, even if I’m working hard trying to keep my health in line.
  • Split/Share meals. Works great with a toddler in tow. I usually finish Bean’s vegetables and take a few bites of her mac n cheese. Then order an entree salad. I’ve also shared with my spouse. Unless ordering specific items from counter service, meals are large enough to feed two.
  • Check menus beforehand. Menus for all restaurants in the Resort can be found online with a simple Google Search. Here is one example.

Some Resort Favorites for Dining as a PWD

  1. Carnation Cafe (Disneyland) – great comfort food selections, but they also have salads. Breakfast and lunch are great. Make reservations around Parade Time.
  2. Jolly Holiday Cafe (Disneyland) – The Grilled Cheese and Tomato Soup combo is my go-to, but they also have salads and other low carb options. (Chicken salad for example.)
  3. Storytellers Cafe (Grand Californian) – They have a great breakfast buffet with several lesser known characters walking around. But, the nice thing about buffets is that I can pick out specifically what I want how much of it. So pile on the eggs and bacon or grab a mini Mickey waffle. Breakfast goers can also show their receipt at the Grand’s California Adventure gate and get early access.
  4. Bengal BBQ (Disneyland) – everything is on a stick! Lots of lower carb & protein-friendly options here. Plus, it’s counter service, so it’s quick and usually not crowded.
  5. Hungry Bear Restaurant (Disneyland) – Salads, wraps, and sandwiches. It has weird hours, so head there for lunch.

*You may notice that there aren’t any California Adventure restaurants listed. I’m sure there are options available, but M and I are so rarely in CA to eat meals, that I don’t really have a favorite. We mostly just get snacks, coffee, or alcohol while there.

Finally, Treats in the Resort that are Totally Bolus-Worthy

Disney with T1D - Food, Beverage, and SWAG Boluses

  1. Dole Whip (Disneyland) – Right by the Tiki Room. Pick the line inside the Tiki Room entrance. Much shorter. Also, it’s essentially Pineapple Fro-Yo served in a portion large enough to share. Yum!
  2. Churros (Various) – These carts are everywhere. Follow the smell. But again, split one. One full churro is quite overwhelming.
  3. Potato Soup at Carnation Cafe (Disneyland) – One of my favorites. It’s a fully loaded, creamy bowl of deliciousness. Which stays with me like a slice of pizza. Adjust accordingly.
  4. Mickey Waffles (Anywhere breakfast is served) – As I mentioned, these can be found in smaller sizes at Storytellers, so they don’t have as great of an impact on sugar levels – so long as not all are consumed. Top with sugar free syrup, readily available pretty much everywhere. (Aside – these apparently have a gluten free option.)
  5. Fried Chicken (Plaza Inn/Disneyland) – Fried chicken is tricky because it’s high protein vs. fried, carby exterior. But this stuff melts in your mouth and satisfies even the pickiest of toddlers.
  6. Gingerbread Beignets (or regular ones work too) – Can really only be found around Holiday time, but they come in a set of three, so easy to share.
  7. Bread Bowls at Pacific Wharf Cafe (CA Adventure) – Being a California native, I know how good Boudin bread is. I encourage others to explore the fabulousness of it – just maybe don’t eat the whole bread bowl.
  8. Mickey shaped, well, anything. ‘Nuff said.
Disney with T1D - Food, Beverage, and SWAG Boluses

Om nom nom.

So, hungry yet? Did I miss anything? Tell me below in the comments. Enjoy exploring the different culinary options available in the Resort.

This is also the last installation of the Disneyland with T1D Series. Hope to have helped with planning this great trip. Be sure to check out the Friends For Life Conferences either in Anaheim or Florida if the travel dates align.

Disney with T1D – A Word About Disability Access Service Cards

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Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Posts: Where to Stay, Packing List Part 1 and Part 2, Traveling Tips, Navigating the Parks.

One Disney Park item I haven’t really explored in great detail is the Disability Access Service program. The major reason for not doing so? Well, honestly, why would I need this – I don’t have any special needs that would require this amenity in the Parks.

I’ve been on enough Disney vacations where my condition has never been a hindrance (*knocks wood*). I have had moments, interruptions, and inconveniences of course. But I am lucky enough to not have diabetes completely mess with plans.

Consider the Disability Access Service Card to be a safety net for an already well thought out plan.

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Sample card (from WDW) from the internet. Disneyland Resort logo would be different, obviously.

Some background: In an effort to make the Parks enjoyable for everyone, the DAS cards are available at Guest Services, providing equal access to the amenities, programs, and attractions as needed. Those with mobility, auditory, vision, or cognitive disabilities are frequently used as examples in blogs, news articles and other forms of media to describe this program. The recently revised program involves a short interview with Guest Services and a photo of the individual requesting the card. Disney is not able to ask guests to provide proof of any condition or illness during the interview; only ask what are the requirements the guest needs to make the experience more enjoyable. For example, a child with autism may need a quiet place to stand in line and the ability to leave a line and return at another time.

The card then serves as a Fast Pass-like feature, allowing the guest to not spend time sitting in one queue for long periods of time in a crowded place. Instead, a return time is given at various guest service stations, or the ride itself, and the card holder and family members will ride during their specific time. Click here for a whole lot of information about the program.

This revision apparently serves as a fraud deterrent because the previous program allowed guests to “jump to the front of the line” or ride a ride multiple times without getting off. 

Since I have nothing to compare it to, I have no idea if the previous program was better than the current. But, I fully support keeping a program honest and a Fast Pass-like system isn’t a terrible idea. There are a few blogs available via Google Searches, as well as Disney Forums detailing stories of experiences with the new (and old) system.

So why would this benefit people with diabetes at all? I know, for one, I feel guilty using these systems because “I don’t look sick.” I have an invisible illness so I should be able to enjoy these Parks just as my husband would, right?

But then I thought of a few examples:

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Borrowed from the internet. Example of a readmission pass.

  1. Queues in the heat. I have talked about how keeping hydrated is very important in the Parks. And while Anaheim doesn’t get extremely hot most of the year, summer season can be surprising. In recent months, Anaheim has topped out around 100 degrees; not fun. Even the best efforts to keep hydrated can be thwarted by a hot day. And if I’m stuck in Peter Pan’s queue in the afternoon, where the average wait is 40 minutes on a good day, I can kiss goodbye to my insulin’s effectiveness. Instead, I could use the pass to “wait” in the shade somewhere, then approach the exit with my party and ride as normal.
  2. Hypoglycemia in lines. Lows can strike at the most inconvenient times. Nothing like having to chomp down on glucose tablets while in line and then feeling the hangover around a ton of people while remaining upright. The DAS cards grants users, and their guests, readmission rights. Or a little sheet of paper that states, “hey, return between these times and jump back in the FastPass line when ready.”
  3. Frequent bathroom trips. Similar to point two –  if blood sugars are running higher than normal, most likely, so is the frequency to use the restroom. The readmission cards will also be helpful in these instances since bathrooms are never near the queues.
  4. Access to quiet spaces. I personally like time to decompress after a bad low. But I’m far from the age of being able to sit in the Baby Care Center without a child. (Though, a child with diabetes probably can.) Guest Services should be able to provide a guest with this information and point out any special areas to retreat if I just need a moment.
  5. Access to clean spaces to do site changes. Surely, a crowded restroom with a zillion screaming kids and no counter space is not an ideal place to change an infusion set. Ask Guest Services about Family Restrooms or other suggestions to do this while in the Parks.
  6. Special diets. The Resort restaurants are ready to accommodate a litany of special diets, including dairy free, vegetarianism, gluten free, and no refined sugar. These requests can be made without a DAS card, of course. But for more complicated requirements, allergies, or diets, include this in the conversation with guest services. I will talk about food and beverage in a later post.

These are just a few suggestions of how diabetes can be accommodated with the DAS program. From what I’ve gathered, the interview is more of a “how can we accommodate you best” questionnaire, rather than an interrogation to ensure people aren’t cheating the system. But, in this one instance, diabetes can serve as an advantage to organizing a trip.

I plan to explore this program a bit more when I visit in November. Has anyone used the DAS cards as a T1? Share your experience below.

Disney with T1D – Navigating the Parks

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Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Posts: Where to Stay – Ultimate Packing List Part 1 and Part 2 – Traveling Tips

After all of the planning, suitcase triple checking, and traveling, we’ve made it to the Resort. Hooray!

Disney with T1D - Navigating the Parks - SeeJenDance

There are a few blogs available out on Pinterest which offer road maps to the Parks, with a suggested order of rides, Fast Pass collection, and helpful hints to plan the day. This won’t cover any of that. (That’s why those blogs exist.)

Here are the more pertinent details for a PWD in Disneyland.

For reference, let’s look at the maps of each Park. 

  1. First and foremost, figure out where all of the bathrooms are. Bathrooms, though not the cleanest, are usually where families will test blood sugars, administer insulin, change sites, etc. Also, if it’s a particularly high day, bathrooms will be visited frequently. Locate them early.
  2. Visit Guest Services upon arrival. Here, a guest disability access services card can be obtained if preferred. More on that in a later post. I personally have never used one before, but it could help PWDs enjoy the Parks a bit more.
  3. Locate the First Aid Station and the Baby Care Center. (Usually located next to each other.) The Disneyland First Aid Station and Baby Care facility are located at the end of  Main Street, near the Little Red Wagon corn dog truck. California Adventure’s Baby Care Center is in Pacific Wharf, while the First Aid stand is near the front entrance. I loved having access to the Baby Care station with Bean because it was a nice, quiet air conditioned location to feed or change diapers. These centers can also help with young CWDs who need a quiet place to rest after a bad hypoglycemic reaction. (Pro tip – the nursing rooms in the CA Adventure Baby Care center are private and have rocking chairs.)

Some general tips:

  1. Adjust basal and bolus output as necessary. Sometimes the bright colors and loud music can make me forget I’m walking extremely long distances over a 10 hour period. Especially with long queues. I tend to run a lot lower than normal because of the increased, but steady, activity. While there are many treats available at the ready, a churro every hour to correct dropping blood sugars probably isn’t cost effective. Or efficient.
  2. Take breaks. There are plenty of benches, tables near street shows, and the Enchanted Tiki Room available to sit down and recollect. Or eat something more sustainable. Or rehydrate. Speaking of…
  3. Stay hydrated! While SoCal maintains a fairly consistent whether pattern (always sunny!), there are days, especially now during the summer, where temperatures can hit the upper 90s to low 100s. Sans the obvious heat stroke risk, high blood sugars love dehydration.
  4. Check blood sugars often. I rely a lot on my Dexcom, but I didn’t always have one. On an average Disneyland trip, I can check about 10 times during waking hours. Helps catch hypos I’m not feeling right away.
  5. Bring in food from home. Disney doesn’t have a restriction on bringing in outside food, especially if there are dietary concerns. This option not only saves money, but there isn’t any second guessing (usually) about portion sizes and carb counting. So go ahead, bring a sandwich and grab a table at the counter service locations.
  6. Rent a locker. If space allows, bring a small cooler. Rent a locker at the front gates for the day and pack spare insulin, or spare juice boxes, with ice packs. This is one thing I don’t recommend carrying around the Parks because it either needs to stay on me the entire time, or it becomes a theft risk if I leave it with our stroller. Keep in mind that the lockers aren’t temperature controlled by any means, but this is probably a better place than say, a hot car.

Disney with T1D - Navigating the Parks - SeeJenDance

I’ll speak more about the guest disability access card next. From what I’ve read about the program, it may or may not be useful to PWDs. But since it’s available to us, it’s worth checking out.

Disney with T1 – Traveling: From The TSA to the Grapevine

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Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous Post: Where to Stay
Previous Post: The Ultimate Packing List, Part 1 and Part 2

The bags are packed. The hotel is booked. Let’s go to Disneyland. Oh wait, how? And what about all of this diabetes stuff? While this is a Disney-centric series, the travel tips below are pretty general.

Coming from Northern California, I have both road tripped and flown to Orange County. I find flying to be a bit easier, but realize large families can’t always pile onto an airplane without a significant budget line item. I’ll explore both.

Flying

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If this isn’t a cost strain, I’d highly recommend this option. An early morning flight on a weekday dumps me in Orange County with more than half of the day left to play in the parks. It’s not always convenient with diabetes, but I consider this to be a small blip in the grand scheme of things.

Pros (for me personally):

  • Less travel time – particularly if very little luggage is checked or if flying at an off peak time. (E.G. weekday mornings are VERY busy and require 2-3 hours before the flight takes off.) Most of the time, things go smoothly.
  • Checking Luggage – my preferred airline, Southwest Airlines, allows up to 2 free checked bags. Great for all of those extras I need to bring. And they have so many sales throughout the year to make the trip more cost effective. They have their faults, of course, but so does every other carrier.

Cons:

  • Based on the most recent Southwest Airlines news, cancelled flights and major delays can happen. (But so can traffic.)
  • Dealing with the TSA and Security “protocol” – There are lots of mixed opinions and anecdotes about how diabetes devices and the TSA do or don’t get along. I, for one, will not send my pump through the X-ray anymore, nor will I send my Dexcom through. My sensor can’t go through the scanners most major airports have now. So I requested opt outs and pat downs. This added a lot of travel time.
    Also, I had TSA agents who were either really familiar with diabetes devices and others who were not. Some just swabbed my hands; another wanted to swab all of my pocketed devices. (My Dexcom receiver actually set off an alarm once and I required three levels of permission to get to my flight.) I often arrived at the airport wondering what I’d be asked on THIS trip. And I’ve read about other travelers who just send all their devices through and they’ve never had a problem.

    • Medtronic and Dexcom both advise NOT to send their devices through X-Ray or Millimeter scanners.
    • TSA doesn’t appear to send children under 12 through the scanners. The metal detectors are usually opened for small children, and their families to pass through. (Check the TSA website for more details.)
    • TSA Pre-Check is a more expensive means of getting through security, but this method allows me to go through a metal detector only with my devices on my person. No more pat downs. Or removing shoes. Or removing liquids, etc.
  • Checking luggage and lost luggage: It can happen. This is why most travelers with diabetes will recommend NOT checking any diabetes supplies and bringing along snacks or meals that fit TSA guidelines. (So, probably no Jell-O packets.)

Tips on Flying with Diabetes

  • If on MDI, carry a copy of the prescription with you. Diabetes is pretty commonplace, so an insulin pen probably shouldn’t be that surprising to find in a purse. If there are full vials of insulin in a carry on, the TSA might question it without a ‘script.
  • Bring snacks and an empty water bottle. Because airport food is expensive, as is bottled water. Fill the water bottle after Security at a restaurant tap. (Might require a food purchase.) Stay hydrated.
  • Prime and clear insulin pump tubing after landing. Sometimes air bubbles can form after being in a pressurized cabin for a long period of time. Air bubbles can cause high blood sugars later.
  • Change all devices to the appropriate time zone upon landing. (Not before.)
  • Walk around the cabin a few times during the flight if it’s particularly long. Or, schedule a flight with a layover and use that time to walk, stretch, keep the blood flowing, etc.

Road Trip

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Another viable method to Anaheim is the road trip. From Northern California to Anaheim, the trip can take about 6-8 hours, depending on the traffic and time of day. While it’s not my preferred method, it is easier for many people to load up the car and go.

Pros:

  • Cheaper. Considerably if traveling with a family of four, with children over the age of two. Plus, no luggage fees, TSA struggles, and limited food options.
  • Flexible. Want to leave at 3 am in order to catch the Rope Drop at Disneyland? Go right ahead. Everyone else can sleep in the car. Need to take a break at the rest stop? Cool. Take one.
  • Cleaner. (Arguable, if the car is not the cleanest.) But, sharing pressurized air with everyone on an airplane can make me susceptible to colds. Especially since the air is so dry. At least in a car, windows can be opened.

Cons:

  • Two days are lost due to travel time.
  • There will always be traffic in Los Angeles. Sometimes it’s tolerable. Most of the time it’s at a stand still. For hours. Nope. The Grapevine is highly unpredictable.
  • Less flexibility to move around. Unless stopping every hour is okay with everyone.

Tips for traveling by ca

  • Try to keep all diabetes supplies in the car. Not the trunk or somewhere else inaccessible while on the road. Same goes for snacks and hypoglycemic treatments. Site changes will probably require rest stop breaks.
  • If the trip is longer than 4 hours, explore using a temp basal to increase insulin during the car ride. Particularly if basals are set low to accommodate a very active lifestyle. Talk this option over with a doctor first.
  • Get out of the car and stretch as often as possible.
  • Pack meals and water/drinks in a cooler to avoid strange restaurants with questionable carb counts.

Happy Travels! Next, the first day at Disneyland!

Disney with T1 – The Ultimate Packing List, Part 2

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Disneyland with Type 1 Diabetes - SeeJenDance

About three years ago, I wrote a very similar post about navigating the Disney Resort with a broken pancreas. However, times have changed, information was left out, and the post was extremely long. To follow up on this original post, I’m creating shorter series-like posts to reference at different points of trip planning.

Why is this relevant to the non-Disney fan? The Friends for Life Conference is held annually in Orlando, usually on or near Disney property. CWD is also planning a conference at the Disneyland Hotel in September 2016 and  May 2017. (And if you are a parent caring for a CWD, definitely check out a Friends for Life conference if you can.) In between sessions and in the evenings would be a fantastic time to check out the Resort.

These posts are Disneyland Resort, California specific, but the tips can apply to visiting the Resort in Orlando as well. (I just live much closer to “Land.”)

Previous post: Where to Stay

Previous post: TUPL, Part 1

This post contains affiliate links.

I promise this list will be a bit shorter than the items to be brought on the vacation itself. Plus, it’s fairly similar to part one; but there is no reason to carry 10 infusion sets inside. (I mean unless you really want to. But, why?)

Let’s assume the hotel or condo of choice is within walking distance. (I.E. Less than a mile from the entrance.) And that everything is being carried in that awesome bag I said to bring in Part 1. There are other lists available on the internet about other items to bring into the Parks (like toys for kids, cash, sunscreen, ponchos, etc.) If traveling with a PWD, add these items to your stash.

  1. Everything needed for a 12 hour period of diabetes. This includes a meter with test strips, a lancing device, a method to administer insulin for meals, a full pump cartridge and functioning battery, a CGM, if used. I feel like this is common sense, but I’ve also accidentally left home without my meter or a vial of fast acting insulin. It happens. Pack it.
    • Aside: try to keep all of these supplies in the same general area of the backpack or purse. Bags are searched upon entry and it’s just easier if stray syringes also accompany the glucose meter. I’ve never had a problem with my supplies being questioned, but who knows.
    • Aside 2: If space allows, pack an extra site change for the insulin pump. Usually, if I have a wayward site, I can leave the Park and walk back to the hotel to change it. But if walking back in 10 minutes isn’t an option, keeping one replacement site on hand is necessary.
  2. Something to wipe down sticky hands. This can be baby wipes, anti-bac wipes or gel, or whatever. There will be times where checking glucose levels need to occur far away from a restroom. Since everything in Disneyland sweats sugar, wiping down before a check will greatly assist in keeping everything accurate.

  3. Snacks and Hypoglycemia treatments. I try to keep several in my bag at the top of the morning and then replenish on a midday break. This is also cheaper than purchasing snacks and big bottles of soda from Disney itself. Glucose gels are handy here because they are quick acting and flat – so they can be layered on top of each other with minimal room.

    • Aside: Disneyland Resorts allows guests to bring in their own food to the parks, so hiding these items at the bottom of a bag isn’t necessary. Bringing in meals is also an option, but I’ll cover that later.
  4. An extra pair of socks. If a midday break isn’t in the plans, pack an extra pair of socks. Water rides are fun, but sitting around in wet socks is not.
  5. Disney with T1D - Packing List part 2 - SeeJenDanceReusable water bottle. Doesn’t matter if one is brought from home or bought at the souvenir stand. High blood sugars thrive on dehydration. Stave off dehydration and purchasing multiple $3-$4 bottles of water by bringing one from home. (I like Klean Kanteens.) The tap water in the Parks is okay (woo, LA Water) – see if the bottle can be filled with ice first or bring some Crystal Light Pure or True Lemon.

Have anything else to suggest? Comment below.