Type1 diabetic concerns

[RobNJ]

While I have been to Disney a number of times before, my upcoming trip is my first as a functioning type 1 diabetic. (A year ago, my pancreas decided to eat itself, put my body in a coma for 25 days, and now I have a sliver of a pancreas and a greater appreciation of life.)

I am quite nervous about eating out each day and dealing with foods and sauces that are new to me. Currently I only take long acting insulin each night and my sliver of a pancreas (and being careful with what I eat) covers the rest of my meals.

From what I have researched, I know that I should test often and stay hydrated. I have never tested while standing in a line and I am worried since I will be there between Christmas and New Years and I know that the crowds and lines are quite long.

Please share any suggestions, encouragement, and experiences that work for you. My family has already been through a lot dealing with my coma and recovery, I don't want to add a Disney health related trauma to my history.

Thanks for your help.
Rob

 

[emldrl]

Wow, sorry that happened to you, but so glad you are still here! I have a few suggestions for you: (I was a nurse before I became totally disabled)
1. ALWAYS keep a sugary snack with you, in case your sugar bottoms out. Hopefully you will feel it coming, and can eat the snack wherever you are. Your family can also be educated on what to watch for when it's happening (if they don't already know).
2. Get the DAS card. Since you are new to this, and might not always be aware of when you are bottoming out, I personally don't think it's a good idea to be stuck in long lines right now, where it might be difficult for help to get to you. Just go to guest relations at the first park you visit, and explain why waiting in the regular lines would be problematic.
3. Have your dietary needs noted on ADRs, and talk with the chefs about what you can eat, and what you should avoid. AT CS restaurants, they should also be able to help with this, if you need it. WDW has a great reputation for taking care of guests' dietary needs.
4. Talk with your doctor before you go, and see if they can give you useful info about traveling with diabetes. I'm sure they'll give you good tips.

Good luck, have fun, and be safe!!

 

[lanejudy]

to disABILITIES!

Sorry to hear you've had such a challenge with your diabetes, but glad it sounds like you have things under control. Many guests with diabetes visit WDW each year. One thing to keep in mind is that there is a LOT of walking and activity, probably much more than you typically encounter in a normal day at home/work. This will impact your sugars. Many people find they can "relax" their diet a bit because all the extra exercise burns it off; unexpected lows are much more common at WDW than highs. Keep your quick-sugar with you at all times -- glucose tablets, snacks or whatever -- and bring plenty. Also carry plenty of supplies and expect to test at least twice as often as usual. Stay hydrated, don't wait until you feel "thirsty" to drink.

Restaurants do not provide carb counts (maybe BOG?). Depending on how long you have been dealing with diabetes, you probably are quite adept at estimating portion sizes and carbs. Calorie King is a popular resource that people like to carry with them -- either as an app or the book. Know that if you request a "diabetic" accommodation at meals, they likely will translate that directly as "non sugar" without regards to the sugar source or other carbs. DH finds that sugar substitutes actually react worse for him, so he avoids most "no sugar" foods that in reality use a sugar substitute. But you know how your body reacts. Also, commonly a dessert offered to diabetics is a bowl of fruit, which may be just as high in fructose as another baked item -- again, depends on how your body reacts and how you treat.

Talk with your doctor. Explain some of these concerns. Find out whether he/she recommends you alter your treatment schedule (you indicate only taking a long-acting insulin at night) in the event you encounter highs during the day (again, not likely, but with different eating habits it's possible).

The DAS may or may not be helpful. Keep in mind that the time of year and crowds will work against you. If lines are 2 hours, your DAS will be tied up for that whole time, further limiting how much you can do at a time of year that is already quite limited due to the crowds. Hopefully you have FP+ planned. As long as you have your quick-sugar on hand, you'll probably be fine in lines with your family. Make sure they know what to watch for. Maybe try some shorter lines and see how comfortable that is for you. Plan to take it slower than usual, and maybe plan mid-day breaks (either at the resort, or a table-service meal, or just sit and people-watch for a bit).

Enjoy your vacation!

 

[SueM in MN]

Lanejudy pretty much gave all the information I was going to give.

 

[RobNJ]

Thanks for all of the info and support. My doctor did give me some quick acting insulin if I need it. I also did plan fast passes for each day to help pace myself.

I read about the DAS card and wondered if I could qualify for this. It could help to have times to be back to a ride and I could test and correct levels when not waiting in long lines.

I also read that some people have drops in glucose numbers when riding roller coasters? Does anyone have any first hand knowledge about this?


Thanks again for helping make this a great trip.

Rob

 

[Nanajo1]

Do you have a nutritionist? That person should be able to help with ideas for food substitutes while at the parks. Have a great trip.

 

[ttintagel]

Testing while standing and waiting is one of the most valuable skills you can develop as a person with Type 1. It will come in handy in so many times and places I can't even begin to list them. IMO, practicing and getting good at this before your Disney trip would be a great use of your time.

I don't know what kind of meter you have, but the two-pocket method works well for the Freestyle meter that's built into the remote control of my Omnipod insulin pump. One pocket is the outer pocket of my messenger bag, and the other is my pants pocket. If I'm wearing pants without a pocket, I improvise - the second pocket is more of a convenience than a necessity.

1. Unzip case halfway and put it in open pocket of bag
2. Clean hands with hand sanitizer
3. Prepare lancing device and put in pants pocket
4. Take a test trip out of the vial; return vial to case
5. Take meter out of case and turn on (my meter also requires me to confirm that it's me who's using it)
6. Insert test strip
7. Take out lancing device and prick finger on hand that's holding meter
8. Return lancing device to case
9. Switch meter to other hand
10. Apply blood to strip
11. When reading is finished, remove strip
12. Put meter and strip back in case
13. Zip case and close pocket

If you have someone in your party who's willing to hold equipment for you while you test, that makes things even easier.

If I plan to test pretty much every time I hit a line, it works out as a kind of reminder system for me. And since I have a personal thing about not getting on a ride if I'm going low (I don't always bounce back up right away after treating, and I don't like the idea of being stuck and not being able to get out if I start feeling worse), it gives me a sense of security to test before getting on.

As far as the DAS goes, the majority of the stories I've heard about people requesting one because of diabetes have been that when they do get one, it's usually because some complication has caused them to have a specific need that makes the regular queue unworkable. (And if it's a mobility issue, Disney's response is usually a mobility aid rather than a DAS.) But explaining your specific needs to Guest Services and seeing what they say is always the best route if you have any questions.

 

[amykathleen2005]

Thanks for all of the info and support. My doctor did give me some quick acting insulin if I need it. I also did plan fast passes for each day to help pace myself.

I read about the DAS card and wondered if I could qualify for this. It could help to have times to be back to a ride and I could test and correct levels when not waiting in long lines.

I also read that some people have drops in glucose numbers when riding roller coasters? Does anyone have any first hand knowledge about this?


Thanks again for helping make this a great trip.

Rob

Be very careful with the quick acting insulin. I hope that your doc has given you specific guidelines for using it. Coverage for a high blood sugar is one of the reasons people bottom out. With your pancreas issues are you considered as a type 1 or type 2?

A DAS is for people who have a specific reason that they could not wait in the line for a ride. I don't really think your condition as described would necessarily fit the DAS criteria, but I am not the one to decide such things.

I don't think that glucose will drop that drastically on a roller coaster. A coaster is only a few minutes long, in that time your body would only be able to drop a little bit unless it was overloaded with insulin or already hypoglycemic to begin with. Blood sugar is often affected by what you eat, the heat, hydration and how much you are exercising- which still are things that may happen on a Disney trip.

 

[SueM in MN]

Be very careful with the quick acting insulin. I hope that your doc has given you specific guidelines for using it. Coverage for a high blood sugar is one of the reasons people bottom out. With your pancreas issues are you considered as a type 1 or type 2?

A DAS is for people who have a specific reason that they could not wait in the line for a ride. I don't really think your condition as described would necessarily fit the DAS criteria, but I am not the one to decide such things.

I don't think that glucose will drop that drastically on a roller coaster. A coaster is only a few minutes long, in that time your body would only be able to drop a little bit unless it was overloaded with insulin or already hypoglycemic to begin with. Blood sugar is often affected by what you eat, the heat, hydration and how much you are exercising- which still are things that may happen on a Disney trip.

Yes to the bolded point 100 times.
High blood sugar definitely is an issue, but not usually an emergency because it takes a while to develop and is not going to knock you out like low blood sugar can.
Think of when you were first diagnosed - many people are diagnosed with blood sugars in the high hundreds and had been walking around that way for who knows how long. So, high blood sugar is a problem and you don't want it sitting high, but treating it too aggressively with short acting insulin can lead to bottoming out very easily.

Many people find their blood sugar runs low at WDW for all the reasons in the second bolded part. So, test frequently and be ready to treat lows.

I agree that blood sugar is not likely to drop that quickly just from going on a roller coaster. As the previous poster noted, it's most likely that the blood sugar was already on the hypoglycemic side.

 

[buffettgirl]

Thanks for all of the info and support. My doctor did give me some quick acting insulin if I need it. I also did plan fast passes for each day to help pace myself.

I read about the DAS card and wondered if I could qualify for this. It could help to have times to be back to a ride and I could test and correct levels when not waiting in long lines.

I also read that some people have drops in glucose numbers when riding roller coasters? Does anyone have any first hand knowledge about this?


Thanks again for helping make this a great trip.

Rob

Actually, more than likely, your blood sugar will spike from the adrenaline rush of going on the roller coaster. Beware the adrenaline spike and try to treat it as conservatively as possible. It will bottom out on you soon after.

Something ironic about roller coaster BGs from roller coasters...no?

 

[tonyhoop]

I always carry glucose tabs on me to treat any lows at might happen. Easy to carry.