Disney With Diabetes (continued)
It's important to split up these supplies into two bags because you never know when you may:
• Lose a carry on bag;
• Leave a meter some place;
• Dump a can of strips;
• Break a bottle (or two) of insulin;
• Cook the insulin in a refrigerator;
• Or even diagnose a second type 1 kid on the first day of your vacation.
Yes we cooked insulin in a refrigerator, thanks to a faulty fridge in the hot summer heat and some plain bad luck. If it can happen, it does happen. In retrospect, the stories are kind of funny. What is really important is that in each of these moments, "double-packing" supplies was a huge help.
If you find yourself without the supplies you need, your hotel can arrange for a drug store to deliver supplies to you. However it will be at full list prices. We have done that, too. (FYI: IV prep to help keep the insulin pump infusion sets sticky was hard to come by.)
One other thing we do is we now put my name and cell number on our diabetes supplies. Once, we lost a meter and before it surfaced, the Magic Kingdom Lost and Found showed us exactly the same brand meter we lost. But it was not our meter. If it had had the owner's name on it, I would have made a very serious effort to track them down.
And if you fly, know the rules. Print the security rules and carry them just in case you run into a TSA screener that doesn't know them. This way, you know what you can and can't bring on the plane with you.
First, relax and have fun! You can't do it all, so just have fun doing what you can do. My advice is to get up early and be at a park when it opens and the crowds are thin. When the parks get crowded around noon, go back to the hotel and enjoy the pool. Return for other rides and attractions after some time resting at the pool.
All the Disney Hotel accommodations, except the lower priced "value" resorts, have refrigerators you can use to keep your insulin cool. If you stay at a value resorts, make it clear when you book your reservation that you need a fridge to store insulin. Make sure you throw out terms like "medical necessity" so you are provided with what you need. They will also give you a sharps container. Just call housekeeping and ask!
If you carry insulin around, you may worry about cooking it in the hot Florida sun. (The refrigerator was a freak thing that could only happen to me.) Get a Frio Pack. These ingenious little bags keep you insulin cool with the physics of evaporation. Just soak them in water overnight and they stay cool for over 40 hours.
Heat, activity, and adrenaline affect your insulin needs. Disney coincidentally has heat, activity, and adrenaline rushes - not to mention junk food. You should be ready to make changes to your insulin dosing.
On some trips, we have found the insulin load decreased, probably from all the walking. On other trips, we found that the total daily dose was up for both kids. Maybe part of the reason was having pumpers who were freer to eat as they pleased, but the nighttime basal rates were up, too. It was hard to tell what was causing the fluctuations.
Don't make any adjustments to insulin without testing after the change. (In the interest of full disclosure I do NOT have stock in the makers of test strips. But judging by how much we test, I think I should.) We tested like mad. We test in the parks. We test late at night. We added more strips to our already redundant packing list.
Disney is great for so many reasons. Unfortunately, providing accurate carb counts are not one of those reasons. So you need to be up on your carb estimating game. Take a Calorie King book. So you need to be up on your carb estimating game. Take a Calorie King book. If you have a PDA or smart phone, you can load an electronic carb guide. USDA has a free one.
All the more reason to test often.
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June 5, 2016. Our Tour de Cure (New Jersey — Skylands) was nearly rained out. Rain, with periods of thunderstorms, was predicted all day. At the eleventh hour (almost literally! the email was timestamped 21:25 the evening before), the tour organizer notified us that the 100-mile route was being cancelled, but that riders could choose to ride the 66-mile course (or one of the shorter courses) instead. Just before midnight, the decision was made to have a rolling start for the...