Help! going to WDW with diabetes....

[ravengirl]

My DH was diagnosed with type 1 diabetes four days ago and it has turned his world upside down, everything just seems so overwhelming at the moment.
His blood sugar level is still really high he is afraid to eat anything that will increse it, he has 4 tests and 3 injections a day (which he hates).
We are going to WDW October 27th for 2 weeks, is there anything we should know, there are so many unknown fears, we thought about cancelling the trip so any advice anyone has would be helpful.
Thanks and Cheers!
Ella

 

[SueM in MN]

Welcome to disABILITIES.
You will get a lot of good advice here. There are quite a few posters here who are also dealing with diabetes.
i know that you are feeling very overwhelmed right now, but the end of October is a long ways away and your DH will have time to learn everything that he needs to know before then.

 

[Cheshire Figment]

As Sue says, you'll learn a lot over the next four months. Don't panic; people with diabetes go to WDW all the time.

If you are staying at a Disney Resort call Special Reservations at 407-939-7807 and explain that you need a refrigerator for insulin. If you go through them there will normally be no charge. Otherwise there is a $10.00 per day charge for a 4 cubic foot refrigerator.

When the refrigerator is installed check the thermostat. Sometimes to assist in a fast chill they will set the termostat to maximum cold; this can cause freezing and damage to insulin.

Until recently I had used a "Penlet II" device for my testing but it broke. I replaced it with a B-D tester which uses their "BD Ultra-Fine II Lancets" and the finger sticks are much less painful than in the past.

When you go to the parks you can drop off and store your insulin and syringe at First Aid. They when you need a shot you can go there. However, there is, what I feel, a better alternative.

I take a two-piece toothbrush holder. Before leaving my room I will fill the syringe for the evening dose and then put the cap back over the needle. I will take an alcohol pad (still sealed in its packet) and wrap it around the top part of the syringe (NOT the plunger) and then insert the combination into the holder. I will then gently put the top portion of the holder on the bottom part. This isolates the plunger and protects everything. When I am ready for my injection I then go into a restroom (usually the handicap stall), open the holder, gently remove the syringe and pad and give myself the injection. I will throw away the pad and put the syringe back into the holder until I can properly dispose of it.

There is no problem, even in summer, of carrying this in a belt bag or purse; it is only prolonged exposure to heat which can damage the insulin. Using this you will keep your bottles refrigerated.

If you are flying have all your medicines and testers in your carry-on luggage. I have never had any problem with medication or syringes at airport security. If you are driving put the medications inside a double plastic bag and keep it in a cooler obove the ice. Again, this will not harm it.

Within four months you husband should have a good idea of what he can and can't eat. I have talked to my endocrinologist and he has given me suggestions for adjustments to my insulin dosage before a meal if I will be eating pizza or desserts.

There is no reason to consider cancelling a trip for something like diabetes.

One last item, unless your husband exercises regularly he will find that he does a lot more walking than normal at WDW which in itself will work to keep the sugar levels down.

 

[Tiger Fan]

In addition to battling breast cancer, I was diagnosed with diabetes the month before our last trip. I was devastated. I am happy now to report that things are great (it's been 8 months, a WDW trip and a cruise later). I'm lucky that I didn't have the issue of insulin on my WDW trip, but it did make our meals a little tricky. WDW however is one of the best places I've found to make things work. Just speak up when making PS's and tell the server at each restaurant. Good luck and have a great trip. We're going again in July and I can't wait.
Lisa

 

[Safari Steve]

Sugar-free vanilla and chocolate ice cream, as well as sugar-free brownies and apple pie are available at various locations across property. Additionally, all WDW table-service restaurants can cater to guests with special dietary needs. For maximum ease, let the restaurants know of any special concerns at least 24 hours in advance.

 

[Talking Hands]

Word of warning about the sugar free desserts at Disney. They are sweetened with nutrasweet(equal). Do not use them if you have a problem with that. Also remember that just because the sugar is removed the fat isn't and it may actually be higher in fat than the regular verson of the same.
Some places if you notify them in advance will make up something with Splenda but you need to give them more than 24 hours (Boma was great about this). I let them know when I reserve. Others try to pass off an item with nutrasweet as one that is not. (Yes it happened to me at Mama Melrose. The packaging was conveniently discarded but I had the item prevously and knew it was sweetened with nutrasweet) I was not pleased to sit there as all the others at my table ate beautiful chocolate desserts and I had nothing. The couldn't even provide a piece of fruit.

 

[ravengirl]

Thank you for all your mountains of advice! I appreicate it more then you realize!
I know the thought of cancelling the holiday does seem a bit alarmist, but as this is new to both of us we have spent evenings reading through all of the literature that he came home from the hosiptal with and there seem to be so many "worst case scenarios" so the thought of cancelling was his idea, but after sharing all of your responses with him, POR here we come!

I rang Virgin who is our travel agent today and yes, it is not a problem to carry on board everything he needs as long as he has a letter from the hosiptal and carries a diabetes card to get him through customs and I have ordered a special meal for him during the flight over.

Thank you for the info on the fridge for the insulin, Virgin told me that it will be £15.00 day to hire, but I will ring Disney directly to see what they have to say

Does the heat affect those with diabetes differently? I suppose we will have to take things at a certain pace, which means more air conditioned gift shops for me- Yay!

His blood glucose level is still really high ( 29, it was 43 when diagnosed), we seem to have spent a week coming up with new and interesting ways of how to cook a potato, he seems to be coming to terms with his injections a bit better, on tues, we go to the hospitial together to discuss those "worst case scenarios" and meet with the dietician, so we can start eating something more then potato!
Thank you again!
Cheers!
Ella

 

[Lou-Ann]

Actually, WDW is the best place in the world to go if you are Diabetic. They have so many offerings if you speak up and ask them. I have had diabetes for 6 yrs now and find it so much easier to eat at WDW than elsewhere. there are even fruit stands in the parks. Buffets have fruit as well. Protein is readily available. With 24 hr notice you can have just about anything you desire. You can do this. Have a wonderful time.... By the way, even Beaches and Cream has sugar free/fat free items for your pleasure.

 

[mykidsmom]

Ravengirl,

You will not believe how much things will settle down in four months. My four year old ds was diagnosed 4 months ago. We were reeling and thought our life had changed for the worst. Thanks to the grace of God and some experience under our belt I would say our life has changed for the best. Good luck and God bless!

Chesire

I am so interested in your toothbrush holder tip. I can't quite figure out how you wrap the alcohol swab around the syringe and also how the plunger is protected - do you put the cap back on the plunger. Also, we currently combine Lente and humalog in his shot. Doesn't that have to be taken right away as opposed to being stored for a while?
And last do you worry about your insulin or test strips getting to hot? Thank you!

 

[mike07801]

Just a thought on the syringe in the toothbrush holder...

I have been on insulin for about 20 years. About 10 years ago I got some really great tips from my Certified Diabetes Educator (a Registered Nurse.) She said that unless you get very very sweaty or dirty at your injection site, you can go without the alcohol wipe. She said that studies were done and there were no more infections for people who skipped the alcohol wipe. I've been injecting for over 10 years without wipes into my abdomen with no trouble. Also, I inject at the table, (I use Humalog which needs to be injected right with your food) out of view. (If needed I just inject through my shirt. its no big deal. Remember the syringe goes through that thick rubber vial stopper, your thin shirt is nothing after that. My educator taught me that trick too.)

If anyone has questions drop me a line. Hang in there. It gets better with time. Disney is really great for folks with diabetes.

 

[Talking Hands]

I agree with Mike. No alcohol swab, inject at table through clothing.
I carry my supplies in a small red Tupperware box. It carries my meter, strips, 2 syringes, lancet and 2 vials of insulin. It fits neatly in my purse or backpack. Do I worry about the heat. Not really and I live in Florida year round. Just don't leave it in the car as it will bake. If you can tolerate the heat your insulin will too.
Always keep an extra set of vials of insulin back in the hotel in case of problems or breakage.
The toothbrush case idea will not work for me as I use a sliding scale on my regular and adjust the amount according to my meter readings.

25 years on insulin and a Hb1Ac of 5.9

 

[aalan]

ella: i am glad you decided not to cancel your trip to disney because of your dh diabetes. right now, i'm sure its all a bit overhelming, but things will settle down in the next few weeks...one thing to remember is that diabetes is different for everyone, your dh will figure out his own exact schedule.

its really not that big a deal, i have been taking 3 shots a day for 21 years with no major problems. i feel very lucky, as some people do struggle with highs and lows.

i carry an insulin pen with me on my diz trips and find it very convenient. also, be sure to carry some snacks (raisins, lifesavers, etc.) for those unexpected lows that you may get from walking around the parks all day. yes, its expensive, but the quality and variety of the food at disney has greatly improved over the years. finding decent, healthy meals is not a problem.

go and have a good time. and dont stress! by balancing insulin, diet, and exercise, my life is pretty much normal. so good luck, and do not hesitate to email me if you have any questions. (artyalan@ecentral.com)

 

[coachv]

Take some glucose tablets with you. You will do lots of walking and you are still in the honeymoon period of diabetes. That means your pancreas is still producing some insulin. You bloodsugar can still go up and down. The tablets will raise your bloodsugar more quickly than anything else if his bloodsugar gets low. You can buy them at your local Wal-Mart. I have been a diabetic for 16 years and I use an insulin pump now. In time, I would check out using a pump. It gave me back some normacy to my life. A great website is www.insulin-pumpers.org Have a great time!!!

 

[tink2dw]

One of the best tips I got as a Diabetic, is to carry 2 cards, 1 with Docters instructions for treating too low a bloodsugar and 1 for how to treat too high a bloodsugar. It's hard to remember in a crisis. This takes the guess work out of it and makes sure everyone Knows what to do!!

One other VERY Comforting thought is that, the WDW First Aide Stations are staffed by Registered Nurses that can help you with ANY diabetic problem.
They have extra needles if you need one,[I forgot to restock my kit one night. They even asked if I needed insulin!!] You can drop off used Syringes so you don't have to take them home on the plane. Or even drop in to use the bathroom.[I needed to do this twice at Disneyland.]

Plus it is the only place you can get Nurse Minnie Stickers for your collection!!

Getting a handle on diabetes is a matter of practise learning, patience and Docter visits. You and your Dh will have it mastered in no time!!

And 1 piece of advice. When I feel[shaky,sweaty,dizzy] a low bloodsugar starting I grab cheese,a protien, to bring it up, instead of a sugar, like a hard candy,it works fast without bring the bloodsugar up too high.

 

[Talking Hands]

It works because cheese made from milk has lactose a milk sugar. It has noting to do with the protein in the cheese. Beware that not all protein will work. When you are hypo you need SUGAR of some sort to quickly raise your blood sugar levels. Protein alone is not effective.

 

[ravengirl]

Hello all.
everything is still a bit overwhelming at the moment as his stubborn blood sugar level refuses to go down, he has increased his insulin dosage 4 times already, I suppose it is just a matter of finding the right amount, but poor thing, he just gets so frustrated with every reading he takes.

They have recently put him on an insulin pen which I think he feels is a bit more "carefree". We are still worshiping from the potato cookbook as it is the only thing that does not make his sugar level rise, when everything settles down I never want to see another potato again!

Thank you all for your kind words and advice and I now realise that we probably need this holiday more the ever!
We went to see the doctor recently about what I have to do if he becomes "hypo" as he may not be able to recognise the symptoms, because his blood sugar level is so high this has not become an issue, but I imagine it will do in the coming months especially in the hot Florida sunshine, but I will say that the whole "hypo" thing is a bit scary, the doctor we saw was quite dramatic about the fact that if there is no time to test the blood and he does not get sugar immediately he will fall into a coma, does it really happen that fast?
I really don't want to become over zealous and forcing candy down his throat!

Any insight is always appreciated!
Thanks again!
Cheers!
Ella

 

[Talking Hands]

It can be that dramatic but most of the time is not. I keep a few tubes of cake icing gel in my purse for emergency use. Most of the time I know when I am getting hypo and can test to see how low I am. On occasion I will drop dramatically but usually am able to let my husband know to get me sugar fast.

I would suggest you stop with the potatoes now. They are pure carb. Concentrate on green leafy vegetables, summer squashes and other low carb veggies, salads and plain grilled or broiled meats and fish. Breads, rice, potatoes, etc only on a very limited basis. Fruits concentrate on whole fruits with lots of fiber and not juices.
I've had diabetes for almost 26 years now and run a Hb1Ac of 5.9 which is in the normal range.
You can definately enjoy Disney with diabetes. Lots of water. Frequently checks on sugar levels because of increased activity levels. I even get to treat myself with a small raspberry swirl on occasion.

 

[MWGsMOM]

This is my first time posting, but I just had to say Thank You!!! I was diagnosed 2 1/2 months ago with Type I diabetes and have been having anxiety about our WDW trip in December. Reading all of the posts here has lessened those worries a lot!

I am currently taking 5 injections a day and am still having issues with controlling my BS - extreme highs and lows. My case manager feels confident that by trip time, I will have everything under control, but it is so depressing now, I don't know what to think. They are considering changing my long lasting insulin from Ultra Lente to Lantus, maybe that will help.

Anyway, I just wanted to say thank you for all of the wonderful advice that I have gotten from your posts. I am much more optimistic now about the trip, and plan to take advantage of the wonderful knowledge I have found here. Thank you again!

 

[Lou-Ann]

Just wanted to take a chance to welcome you to one of the friendliest sites around and to tell you we are glad to have you join us. feel free to ask any and all questions. One of us will always be ready, willing, and probably able to help in any way we can. Please know that while diabetes can be an adjustment to deal with, WDW is probably the easiest place to travel to with this problem. There is help all around, from the first aid stations to the fridge fro your room. Chefs will prepare foods you desire as well. We hope you enjoy being part of our group.

 

[MWGsMOM]

Thank you, Lou-Ann, I am really glad to have found this site!!!!!