Disney with T1D – Food, Beverage, and SWAG Boluses

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.

post-33868-merida-oh-no-gif-why-disney-pr-mug4-1

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

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

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 2Traveling 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

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

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


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. Disney with T1D - Packing List part 2 - SeeJenDance

    Glucose tablets!

    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. 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 or crystallized lemon packets.

Have anything else to suggest? Comment below.

Disney with T1 – The Ultimate Packing List, Part 1

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


What Disneyland planning series would be complete without a packing list? (Which can then be Pinned to a random “Travel” board and subsequently forgotten about? Guilty!)

PWD Packing List for Disneyland - SeeJenDance

Look, I even offer a graphic to Pin!

I’ll start by saying that I began 2016 with a Capsule Wardrobe. Pinterest has lots of Pins touting the ease of traveling by having this teeny tiny wardrobe and visiting Europe for three months using only a carry on bag. WOW!

Realistically, I can fit a week’s worth of clothes in a carry on bag. But I probably need another carry on bag for my diabetes supplies alone. So, draw a big fat line through that fantasy. Double strike through if there is a toddler in tow.

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There are plenty of Disney trip packing lists on the internet to view for essentials, like clothing, shoes, first aid supplies, toys, etc. And while I have dabbled in some fashion advice for seasons, that’s not what this list will be for.

For simplicity, imagine the Disneyland trip is for one week, with 3 days in the Parks themselves. Assume that the day-to-day essentials are already packed. (E.G. A meter, an insulin pump, a vial of insulin.)

  1. Baggallini bags

    Baggallini bags are often recommended.

    A bag or purse. Seems obvious, right? I mean, I have to carry my pancreas in my pockets, so that space is full for other essentials, like glucose tablets, my meter, snacks, whatever. Before Bean, I could get through the Parks with one crossbody bag for the day. Now that there is a toddler with us, we have the available space of a backpack/diaper bag. I love things with pockets because organization is pretty helpful when hypoglycemia strikes. (The glucose is always in the same place.) If it’s a child with diabetes, a small backpack works wonders. (I often wore a fanny pack on family trips. No shame.) The bag should be durable, well made, and something that can get dirty/sit on the ground/thrown on sticky tables, etc.

  2. Two weeks worth of pump supplies, sensors (for pump and CGM users), or syringes (for MDIs). Because while I could only use three sets during a seven day period, I could have bent cannulas, No Delivery alarms, or just sheer dumb luck. Sometimes throwing a full box of 10 sets in the suitcase is convenient.
  3. Backup supplies. This can be in the form of syringes, an extra vial of insulin, a backup machine, extra batteries. At least enough to either finish the vacation or allow time for a courtesy prescription to be ordered and received.
  4. Glucagon kit. I will admit I’m terrible at toting this thing around. I almost never bring it with me because, while I keep an active prescription around, I haven’t needed one in a long time. (*knocks wood*) That said, it was used a lot when I was newly diagnosed, mostly because as a child, I didn’t understand my hypoglycemic symptoms. So, if packing for a CWD, include the glucagon kit. Better safe than sorry. Non-medical advice: My mom got by with putting glucose and cake frosting gels under my tongue most of the time. YDMV.
  5. Other hypoglycemic treatments. My personal favorites for the park include fruit snacks, glucose tablets (bring the whole bottle), glucose gels (if you can find them). Skittles, Sweet Tarts, Smarties, and Jelly Beans are also portable options that can be stuck in old test strip containers. I also keep juice boxes in my hotel room for overnight lows.
  6. giphySnacks! Disney Park food is expensive and not necessarily the quickest. I keep granola bars (sans chocolate, because it melts) with me because those are small, lightweight, and I can stick several in my bag without them getting smushed. (I avoid cereal bars if I can because they explode.) Bonus if they have some sort of protein in them. Great for chowing down in line or on the way to the Parks themselves.
  7. Ketone sticks. Besides the obvious reason to have on hand (testing for ketones and possible DKA), these are handy for checking if a soda is actually diet.
  8. Doctor’s Contact Information and Medical Information. Most of this stuff should, in theory, be available in cell phone contact lists and the internet. But, in the heat of an emergency? Have this stuff saved in a screenshot in Photos or in a Note. (Or the Android equivalent.) Bring insurance cards.
  9. 123181562

    Put DOWN the Minnie shoes.

    Comfy shoes and SOCKS. I’m all about comfort, especially in the Parks. I’ve racked up anywhere between 6 and 10 miles during one day. Plus, standing in line for long periods of time does a number on my feet. Since feet are a big deal for PWDs, take care of them. Now is not the time to break in those new flip flops. It won’t end well.

  10. Medic Alert bracelet. This shouldn’t come as a surprise to bring this, but I’ve only really started wearing a bracelet religiously in the last five years. So, maybe it is. They don’t have to be ugly or clunky. There are plenty of fun ones on Etsy or through Lauren’s Hope. But, in a huge public theme park like this, this is a must have. Make sure it includes the type, a name, a phone number for a parent if it’s a child’s bracelet, and whatever else that can fit. EMTs will look at the wrists and neck first for medical information if someone is unresponsive.

See that wasn’t so overwhelming. (I know, my suitcase is generally full at this point too.) Next I’ll talk about what to actually bring into the Parks.

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Do you travel a bunch as a PWD? Do you have any suggestions to add?

Disney with T1D – Series Post

 

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About three years ago, I wrote a very similar post about navigating the Disneyland Resort with diabetes. 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.”)

First things, first.

Who are you?

Maybe an adult with diabetes, like myself; or maybe a parent of a child with diabetes about to embark on the first major family vacation post-diagnosis. (**waves** Welcome to the party!) If the latter, planning a vacation like this can take months, especially if Disney is new territory. Plus, there are lots of extra unique pieces to consider, like what can my child eat, where the nearest pharmacy is, can food be brought into the parks, etc.

So the date has been set. The time off work has been requested. Now what? Just book the hotel and wait? Consider the following as a family traveling with diabetes.

Where To Stay

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Not mine. “Borrowed from the internet.”

Many Disney enthusiasts will encourage staying “on property,” or at one of the three resorts at Disneyland. (Paradise Pier, Disneyland Hotel, and Grand Californian.) These hotels allow for quick, and early, entrance into the parks, plus the proximity to the parks can’t be beat. For medical conditions, they offer complimentary fridge rentals to keep spare bottles of insulin or juice boxes cold. But – they are usually pretty pricey per night and don’t usually have an included continental breakfast.

My alternative locations are nearby “Good Neighbor” hotels on South Harbor, which range anywhere from a Best Western Park Place Inn (fridge, microwave, free breakfast, steps from the entrance) to the Sheraton Park at the Anaheim Resort (near CVS pharmacy and GardenWalk Anaheim).

If there are several travelers, there are many vacation rental condos through VRBO or AirBNB in the area. These typically have a full kitchen (cook carb-countable meals!) and multiple rooms. Usually for the price of a higher end hotel or a suite. They aren’t always cheaper than a nearby hotel, nor are they super close, but the money saved making meals in-house is worth it. This is what we’ll be using in November.

Proximity to the Resort can mean the difference between carrying in loads of spare supplies into the Parks, or quickly leaving and returning before a botched infusion set becomes dangerous. I always advise staying somewhere within walking distance, if possible.

What’s Nearby

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While staying close to the Resort is important, so is proximity to key emergency-type services. At the very least, locating the nearest pharmacy is important. Within the last year, a new CVS network pharmacy opened on South Harbor a few blocks from the Parks. It’s open 24 hours. There are also several WalMart and CVS pharmacies drivable from South Harbor.

Further down South Harbor are a Walgreens and a Target. The Target will have glucose tablets, juice boxes, and portable snacks in a pinch.

There are also several convenience and souvenir shops along South Harbor and Katella that sell snacks, waters, candy, sunscreen, and so forth if something didn’t quite make it into the suitcase.

In the rare chance that an emergency room would be needed, Anaheim Regional Medical Center is about 5 miles from the Resort.

Luckily, I’ve never needed emergency services while on a Disneyland vacation. But, I have begun traveling to a destination, only realizing too late that I had two test strips left for a three day business trip. I ended up purchasing a vial of strips with cash, thus skipping a call to my doctor for an emergency prescription sent to a random pharmacy.

Point is, know what is nearby ahead of time and if a prescription can be ordered as a courtesy. (Or can out-of-network refills be reimbursed upon return.)

So, the place to sleep has been set. What now?

Approval

Conversations a woman with diabetes must face when considering getting pregnant.

OB/Gyn:

“Okay, so when do you plan to get pregnant again?”
“Whenever. My husband and I are prepared now, but any time within the next year would be ideal.”
“No, really, when do you want to get pregnant again?”
“If it happens next month, it’s fine.”
“Ohhhh – I see you have T1 diabetes. And your A1c is not quite where we’d want it to be for preconception purposes.”
“Yes, I’m aware of that. But I’ve been through this already and know what’s expected of me.”
“When did you deliver?”
“41 weeks.”
“Whoooaaa! You must have been really good at what you were doing and knew your stuff to let Dr. [MFM name] let you go that long. But, still, your A1C needs work.”
“Yes, I’m actively working on it (lady, get off my back)”
“Well, are you sure you don’t want another form of birth control/pre-conception counseling? We even admit women with diabetes who don’t have great control of their diabetes, but your’s seems almost there.”
“No, thank you. I know what the expectation is.”
“So when do you want to get pregnant, again? Because since you have diabetes, you are at a greater risk of miscarriage so we want that A1C to be below 6.0.”
“…”

Endocrinologist:

[runs through insurance provided check-list] “…And you are still on [form of birth control]?”
“No.”
“So are you using any sort of birth control right now?”
“I’m tracking my cycles casually, but no, not really.”
[Something incoherent about A1C not being where it should be, greater risk for miscarriage, blah blah blah, I stopped listening.]

Blood Sugars:

“Oh, you don’t have any hormonal birth control in place?? WOOOOOO HOOOOOOO! ALLLLL THE HYPOGLYCEMIA!”

 

Well… they did want my A1C lower.

DBlog Week: Misc. Mom Hacks

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Today’s Topic: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I don’t have too many “pin-worthy” hacks to survive as a T1; particularly ones that are deemed medically sound. (Such as refilling my pump cartridges before the 3-day mark, rage-bolusing, how to use the same lancet for over a year…)

But I have plenty of mom with diabetes suggestions that will keep both me and Bean happy while out and about. (There are also five of them – so, Friday Five!)

  1. Currently pregnant? Here is a link to a sample of a birth plan I wrote for a medicated birth with possible c-section option. Use the template to build your own.
  2. If you are breastfeeding a new baby, keep all of your “one-handed snacks,” juice boxes, and water in a “station” where you prefer to breastfeed at home. I have a few more tips here.
  3. Your strip container, glucose tablet roll, and/or your Dexcom receiver make awesome distractions/toys in a pinch.
  4. Most likely, you will pack two of the same snack while out on the road. This will save a lot of time during a meltdown or hypoglycemic event.
  5. I wear a lot more dresses now. I love my Girly Go Garter (reviewed here) to wear my pump and keep my Dexcom receiver near by while wearing dresses. This also hides my pump wire much better. (Less pulling, getting tangled in toddler feet, etc.)

DBlog Week: Health Careless

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Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Oh, Lord. What a doozy. Where do I begin?

It’s true. Having a chronic condition does make me intimately aware of the current faults of our healthcare system.

In the 80s, I was assigned to a pediatric endocrinologist who only made my mother cry during and after appointments. I was frequently in the hospital for trying to be a toddler on Regular and NPH insulins and refusing to eat. This was apparently all my mom’s fault. Not the technology available. Not the resources available. Clearly, my mom was a terrible person according to this endocrinologist.

So, we moved away from the HMO network we had of doctors and we started going to, probably, one of the best endocrinologists in the area at the time. Dr. Nancy Bohannon. My parents paid out of pocket for my appointments, which were about every 6 months or so. When Dr. Nancy wanted me to try a new insulin, we had to jump through a variety of hoops to fill the prescription in our HMO. I needed special clearance to start on Humalog and Lantus because my HMO didn’t regularly have it on their formulary list. Luckily, my regular pediatrician was semi-diabetes-savvy, so once we could contact her, we could get an in-network script written.

I turned 18 and moved out of pediatrics, finding myself with a brand new PCP. Someone who only knew me and my life based on the GIANT chart that accompanied my nurses. The topic was my most recent gamut of blood work results, which I completed shortly after having my wisdom teeth pulled. While my A1C was average for a college student, my micro-albumin test results were much higher than normal. Very different than my previous results.

The conversation with that doctor basically turned into a blame game. How I was wildly out of control and I have early signs of kidney failure. Wait, what? For better or worse, I’ve never had an A1C over 7.2%, so the “wildly out of control” thing struck me hard. I mean, I was in college. I liked the grilled cheese sandwiches in the dining hall, plus the occasional (illegal) wine cooler. But, clearly, my kidney function was suffering, so I was given a script for Licinopril, an ACE inhibitor to help protect my kidneys from further damage.

I never saw that PCP again. And I never really had a test result that high ever again. (I haven’t been on Licinopril in over 10 years.)

I decided I needed a new endocrinologist. I asked my new PCP for a referral. I was told I didn’t need one. Um, what? Yep – didn’t need a specialist. But, I needed to take a Statin in addition to my Licinopril because I am, at 20 years old, at a greater risk for a heart attack and all diabetics need to be on one.

We compromised. I took the Statin. He gave me a referral.

I fired that PCP after several mis-guided appointments and found someone who was all about handing out referrals. He was also like “why are you on all of these drugs you don’t obviously need?” Cool. Thank goodness someone on my side.

He left the practice. Fuck.

One more PCP later, I got a new job and left the HMO I had been with for 30+ years. I got to start from scratch with a new network of doctors I could pick. Maybe this is what I needed. Start over fresh. Finally have an HMO which will cover CGM technology because my previous would only do so if you were deemed “brittle.”

Nah. I have issues with script re-orders not being received. I have 3 different prescription and durable medical vendors all taking orders from one office in my HMO. Do I need CGM parts? Call so and so. Insulin? Order online here. Call Medtronic directly for pump parts. Didn’t get your order? Call this number or maybe this number. Or this number?

I currently see my new endocrinologist every three months, rather than annually at my old HMO. We don’t discuss much at my 20 minute long appointments, so I usually question why I go. But, I have “uncontrolled diabetes” marked on my chart, so therefore, I must need to see a doctor more often.

What are the common threads here? Blame. Guilt. Compromise. Inconvenience.

For a chronic illness that came about to no fault of my own and can  only *kind of* be controlled by artificial means, a lot of this sure seems like it all falls on me. Like, I will only get adequate care to survive if I scream for it. Or stop seeing a doctor. Or pay a butt load of money.

Why is this okay?