Newly Diagnosed with Diabetes

[SueM in MN]

Endocrinologist and a Certified Diabetes Educator.
One of my coworkers in a previous job was a Diabetes Educator. By the time they finished with her, patients had a really good understanding of their diabetes

 

[acebatonfan]

I've been dealing with type 1 since 2013, so here's some general advice. A lot of it is a copy-paste from previous threads and my own experiences:

• PACK EXTRAS OF EVERYTHING. Keep track of what you use in a week (or however long the trip is), and double (or possibly triple) it. You test your blood sugar 5x a day and you're going on an 8-day trip, so you need a minimum of 40 test strips - which means you're probably going to pack 100 since test strips more often come in 50-packs and you want to have at least 80 strips since Disney will definitely wreck havoc on your BGs. Disney is hot, and adhesives for devices are going to fall off like crazy, and your blood sugar may drop like crazy. It's better to have spares and not use it than realize you just ripped out your last insulin pump set on the hotel door handle or your only vial of insulin has gone bad in the heat.
• Have backup plans for in case something fails. During one trip my Dexcom transmitter failed (the only thing I didn't bring an extra of since you only change it once every 90 days), so I had to go back to the classic finger prick testing method. I brought my meter and a 50-count of strips with me, so I was good until a new transmitter was shipped, but if I didn't pack it I would have needed to go somewhere like Walmart or a pharmacy and buy supplies there.
• Make sure you have easy access to your diabetes provider in case you need to contact them for emergency refills or medical advice. Things happen, and it's a lot easier to just have a list ready just in case than be cursing like crazy while you try to find the on-call endocrinologist phone number while you're at 400+ and peeing ketones (true story... the insulin in my pump denatured like crazy from the August heat). What I also like to do for everyone in my household is have a general In Case of Emergency face/report sheet for each person that I take with me on vacation - stuff like medical conditions/medications, major surgeries and recent hospitalizations, physician phone numbers. I've actually had to use them at home a few times when calling 911 (or a family member calling 911 on me), and it makes it a lot easier just giving it to EMS and not having to worry about any major information being lost between the incident scene and the ED (clearly I am/was a bedside nurse...)
• Take your time in the park and plan breaks. ALWAYS keep a fast-acting source of sugar available. You're going to be more active than usual, eating different than usual, all these fun things that are going to affect your blood sugars (especially if you are on insulin or insulin-stimulating medications). And when you're excited or tired or hot or hangry, it might be harder to be able to tell if you are low or high. Take breaks frequently and test, since you never know if you might be chilling in the 50s and feel absolutely nothing. I usually just grab a resealable bag or two of any sugary candy and keep it in my backpack for lows, and if I'm having a really bad day will have a bottle of regular coke in there. In my meter case I keep these glucose gel packets, but I only try to use them for extreme lows since they can also be used by family in a first aid situation with my glucagon kit/spray.
• When flying, keep your diabetes stuff in your carry-on. Do not have anything in checked baggage unless you are OK with potentially losing that item. You never kinow when the airline might lose your bag, so I keep all the supplies that I need within my carry-on. When I get up to the TSA desk, I let them know that I have a medical device that cannot go through the scanners and that I have medical supplies in my bag. What ends up happening is that usually I go through the metal detector instead of the full-body scanner and get a pat-down while my bags go through regular scanning and often a hand-search too. Luggage tags and tape are my best friends since I use that to label which bags within my carry-on are medical supplies, which are sharps, and which are medications so that there's no chance an agent grabs a bag and gets suprised when a plastic baggie of pump and injection syringes falls out.
• Get a basic idea of what foods you would like to eat while at Disney. I use Disney Food Blog, and having pictures of what the food looks like and rough portions at least gives me an idea of how I might need to approach SWAG-ing how much insulin to take or what restaurants will be easier for me to guesstimate versus others. It's also nice having an idea of where I can go to get a snack that will keep me relatively steady if I'm having a day filled with lows, since not all places are going to sell the same things or have the same waits.

 

[lanejudy]

I've read some posts that say all the walking will negate the bad diet but realistically we have no clue what your DH's body will say to that.

Very true, every person’s body reacts differently — to medication, to diet, to exercise, etc. Especially with T2 there is often a bit of trial-and error after initial diagnosis to sort through what is most helpful.

However, nowhere do I see anyone suggesting “all the walking will negate the bad diet.” Generally speaking, exercise is good for diabetics and WDW tends to be a lot more walking than most folks do in a typical day. What people have said is that the extra physical activity can help offset the carbs, so there may be a little wiggle-room if a vacation diet isn’t perfect. Nobody has even remotely suggested to eat poorly. You are making a stereotypical assumption the OP’s DH has a “bad diet" to begin with, which is not necessarily true.

 

[DisSurfer878]

I've been dealing with type 1 since 2013, so here's some general advice. A lot of it is a copy-paste from previous threads and my own experiences:

• PACK EXTRAS OF EVERYTHING. Keep track of what you use in a week (or however long the trip is), and double (or possibly triple) it. You test your blood sugar 5x a day and you're going on an 8-day trip, so you need a minimum of 40 test strips - which means you're probably going to pack 100 since test strips more often come in 50-packs and you want to have at least 80 strips since Disney will definitely wreck havoc on your BGs. Disney is hot, and adhesives for devices are going to fall off like crazy, and your blood sugar may drop like crazy. It's better to have spares and not use it than realize you just ripped out your last insulin pump set on the hotel door handle or your only vial of insulin has gone bad in the heat.
• Have backup plans for in case something fails. During one trip my Dexcom transmitter failed (the only thing I didn't bring an extra of since you only change it once every 90 days), so I had to go back to the classic finger prick testing method. I brought my meter and a 50-count of strips with me, so I was good until a new transmitter was shipped, but if I didn't pack it I would have needed to go somewhere like Walmart or a pharmacy and buy supplies there.
• Make sure you have easy access to your diabetes provider in case you need to contact them for emergency refills or medical advice. Things happen, and it's a lot easier to just have a list ready just in case than be cursing like crazy while you try to find the on-call endocrinologist phone number while you're at 400+ and peeing ketones (true story... the insulin in my pump denatured like crazy from the August heat). What I also like to do for everyone in my household is have a general In Case of Emergency face/report sheet for each person that I take with me on vacation - stuff like medical conditions/medications, major surgeries and recent hospitalizations, physician phone numbers. I've actually had to use them at home a few times when calling 911 (or a family member calling 911 on me), and it makes it a lot easier just giving it to EMS and not having to worry about any major information being lost between the incident scene and the ED (clearly I am/was a bedside nurse...)
• Take your time in the park and plan breaks. ALWAYS keep a fast-acting source of sugar available. You're going to be more active than usual, eating different than usual, all these fun things that are going to affect your blood sugars (especially if you are on insulin or insulin-stimulating medications). And when you're excited or tired or hot or hangry, it might be harder to be able to tell if you are low or high. Take breaks frequently and test, since you never know if you might be chilling in the 50s and feel absolutely nothing. I usually just grab a resealable bag or two of any sugary candy and keep it in my backpack for lows, and if I'm having a really bad day will have a bottle of regular coke in there. In my meter case I keep these glucose gel packets, but I only try to use them for extreme lows since they can also be used by family in a first aid situation with my glucagon kit/spray.
• When flying, keep your diabetes stuff in your carry-on. Do not have anything in checked baggage unless you are OK with potentially losing that item. You never kinow when the airline might lose your bag, so I keep all the supplies that I need within my carry-on. When I get up to the TSA desk, I let them know that I have a medical device that cannot go through the scanners and that I have medical supplies in my bag. What ends up happening is that usually I go through the metal detector instead of the full-body scanner and get a pat-down while my bags go through regular scanning and often a hand-search too. Luggage tags and tape are my best friends since I use that to label which bags within my carry-on are medical supplies, which are sharps, and which are medications so that there's no chance an agent grabs a bag and gets suprised when a plastic baggie of pump and injection syringes falls out.
• Get a basic idea of what foods you would like to eat while at Disney. I use Disney Food Blog, and having pictures of what the food looks like and rough portions at least gives me an idea of how I might need to approach SWAG-ing how much insulin to take or what restaurants will be easier for me to guesstimate versus others. It's also nice having an idea of where I can go to get a snack that will keep me relatively steady if I'm having a day filled with lows, since not all places are going to sell the same things or have the same waits.

THISSSSS


And be prepared to advocate for yourself at the airport. We travelled last week and brought juiceboxes for emergency sugar, and the TSA agent argued with me for 5 minutes about having to open the juiceboxes while DH was getting his pat down. We've flown with juice a dozen times and he was so disrespectful to me, I asked for a supervisor who fixed it in less than a minute and gave me them back.

 

[JenLT]

The exercise (walking) after meals really helps to keep blood sugar from spiking. If he is going to eat a lot of carbs with his meals having a bit of protein and fat before hand helps slow the carbs absorption down. A handful of nuts while waiting for a meal or a cheese stick will be helpful.

 

[Caseheidi]

DH and I are both Type 2. I am diet and exercise controlled with Metforman and Jardiance. DH is in insulin and does wear the freestyle Libre to monitor his sugars. It really is great for him, and since he loves anything technical he is in heaven. The best for him is the charts and graphs he can see of his levels over time.

when at WDW, we are both likely to have lows, and they can come on very suddenly. We also pack nuts, cheese sticks and granola. We tend to stay somewhere with a kitchen and start our days with high protein - like an egg scramble with ham peppers and onions. We have discovered that is DH has any carbs with breakfast, he spikes high, if he has protein, and waits an hour or two before any carbs, he is good. It really is finding what works for your body, and learning to listen to what your body is telling you. We also stop and have some small snack every 2 to 3 hours, but some of that might be DD getting hangry. It is especially true when it is hot and humid. I second (or third) the part about staying hydrated.

The walking at WDW is a great help in controlling your sugars, but we have found if we don’t build up to it and train ourselves for a few months before by walking 2 miles 4-5 days a week, we are more likely to have issues with our diabetes while on vacation. I would highly suggest that he start making it part of his routine now and see how it effects his sugars. We find big changes to our usual routine can cause big changes to our bodies, so preparing for them really help.

we are also fans of the Frio bags for carrying his insulin. Especially when it is hot out. They work well on the plane as well, but the monitor (Freestyle) and meds can slow down security if you are not prepared. And I agree with those who mentioned pushing your doctor for more help. There are diabetes classes you can take, and a nutritionist can be really helpful. We were lucky to find a practice that specializes in Diabetes and DH goes in quarterly to touch base with his doctor (I am on the yearly plan since I am more controlled).It works for DH as it helps him be more accountable and controlled. It is really important to find what works for his body and what changes he is willing to make in his life style. Believe it or not, DH still manages to eat chocolate on a regular basis, but he has to walk more and control other things to make it work.

Good Luck with your planning.

 

[EACarlson]

I'm a T2D diagnosed in 2009. When I was at WDW last in 2019 I didn't worry at all about what I was eating and my sugar levels stayed in a very good place most days. Once or twice I went high, which for me means I have to go the bathroom more often. And a couple of times I went a little low during the day, irritable, kind of fuzzy headed. When I get real low I act like I'm drunk and sweat like I'm running a marathon, none of those issues on that trip. Once a day insulin usually means a pen and not a vial, I would highly recommend a Frio for making the trip, but my pens sit out on the counter at home, I did the same thing at WDW. I worry about the temperature range on the flight and in a car, but not once I'm in the room.
I'm curious about the treatment plan though, no oral meds, only insulin? That is quite different than my initial treatment plan where they tried a few different combinations of oral meds before going to insulin. If you're comfortable sharing, what is the current A1C?
Get to know what those low blood sugar incidents feel like when it's early on is the best advice I can give you. That is the scariest thing I've ever experienced when I ignored the early warning signs and ended up with a blood sugar in the 40s. I had that happen one morning and was wiped out the rest of the day, couldn't go to work, slept all day.

 

[teachmedis]

Very true, every person’s body reacts differently — to medication, to diet, to exercise, etc. Especially with T2 there is often a bit of trial-and error after initial diagnosis to sort through what is most helpful.

However, nowhere do I see anyone suggesting “all the walking will negate the bad diet.” Generally speaking, exercise is good for diabetics and WDW tends to be a lot more walking than most folks do in a typical day. What people have said is that the extra physical activity can help offset the carbs, so there may be a little wiggle-room if a vacation diet isn’t perfect. Nobody has even remotely suggested to eat poorly. You are making a stereotypical assumption the OP’s DH has a “bad diet" to begin with, which is not necessarily true.

Thank you! I appreciate this response as in no way did I take any post to mean that my DH can run around eating mickey bars and cupcakes all day

 

[teachmedis]

I'm a T2D diagnosed in 2009. When I was at WDW last in 2019 I didn't worry at all about what I was eating and my sugar levels stayed in a very good place most days. Once or twice I went high, which for me means I have to go the bathroom more often. And a couple of times I went a little low during the day, irritable, kind of fuzzy headed. When I get real low I act like I'm drunk and sweat like I'm running a marathon, none of those issues on that trip. Once a day insulin usually means a pen and not a vial, I would highly recommend a Frio for making the trip, but my pens sit out on the counter at home, I did the same thing at WDW. I worry about the temperature range on the flight and in a car, but not once I'm in the room.
I'm curious about the treatment plan though, no oral meds, only insulin? That is quite different than my initial treatment plan where they tried a few different combinations of oral meds before going to insulin. If you're comfortable sharing, what is the current A1C?
Get to know what those low blood sugar incidents feel like when it's early on is the best advice I can give you. That is the scariest thing I've ever experienced when I ignored the early warning signs and ended up with a blood sugar in the 40s. I had that happen one morning and was wiped out the rest of the day, couldn't go to work, slept all day.

Yes, thank you! He had his first low experience about a week ago. Racing heart, weak in the knees and tingling hands, his number was 50. He also felt extreme anxiety. We fixed it fast, but it was a lesson learned for sure.

 

[teachmedis]

DH and I are both Type 2. I am diet and exercise controlled with Metforman and Jardiance. DH is in insulin and does wear the freestyle Libre to monitor his sugars. It really is great for him, and since he loves anything technical he is in heaven. The best for him is the charts and graphs he can see of his levels over time.

when at WDW, we are both likely to have lows, and they can come on very suddenly. We also pack nuts, cheese sticks and granola. We tend to stay somewhere with a kitchen and start our days with high protein - like an egg scramble with ham peppers and onions. We have discovered that is DH has any carbs with breakfast, he spikes high, if he has protein, and waits an hour or two before any carbs, he is good. It really is finding what works for your body, and learning to listen to what your body is telling you. We also stop and have some small snack every 2 to 3 hours, but some of that might be DD getting hangry. It is especially true when it is hot and humid. I second (or third) the part about staying hydrated.

The walking at WDW is a great help in controlling your sugars, but we have found if we don’t build up to it and train ourselves for a few months before by walking 2 miles 4-5 days a week, we are more likely to have issues with our diabetes while on vacation. I would highly suggest that he start making it part of his routine now and see how it effects his sugars. We find big changes to our usual routine can cause big changes to our bodies, so preparing for them really help.

we are also fans of the Frio bags for carrying his insulin. Especially when it is hot out. They work well on the plane as well, but the monitor (Freestyle) and meds can slow down security if you are not prepared. And I agree with those who mentioned pushing your doctor for more help. There are diabetes classes you can take, and a nutritionist can be really helpful. We were lucky to find a practice that specializes in Diabetes and DH goes in quarterly to touch base with his doctor (I am on the yearly plan since I am more controlled).It works for DH as it helps him be more accountable and controlled. It is really important to find what works for his body and what changes he is willing to make in his life style. Believe it or not, DH still manages to eat chocolate on a regular basis, but he has to walk more and control other things to make it work.

Good Luck with your planning.

Thank you! We have been fortunate to see his doctor 3 times since his diagnosis (December 23rd), and we have a referral to an endo, and we see a diabetic educator this week.
We will be sure to monitor numbers closely while in the parks, and I'll make sure to have snacks on hand. Thank you again and stay well!

 

[DisSurfer878]

Yes, thank you! He had his first low experience about a week ago. Racing heart, weak in the knees and tingling hands, his number was 50. He also felt extreme anxiety. We fixed it fast, but it was a lesson learned for sure.

It can be scary. I'm glad he was okay. We had one this week that was scary and we were at home doing a whole lot of nothing! He had to lie down for about 20-25 minutes. It came out of nowhere. I hope you have a wonderful trip!!!!

 

[mernin]

Appreciate this thread. I was diagnosed March 2021 as T2 but in Nov 2021 found out it is actually T1. It’s been a roller coaster of a year! We have a trip coming up in March 2022 and was unsure what to expect or how to plan for it. There is lots of great informations and tips here, so thank you to everyone for contributing.

 

[elvispursley]

Appreciate this thread. I was diagnosed March 2021 as T2 but in Nov 2021 found out it is actually T1. It’s been a roller coaster of a year! We have a trip coming up in March 2022 and was unsure what to expect or how to plan for it. There is lots of great informations and tips here, so thank you to everyone for contributing.

This was me as well. I was misdiagnosed as T2 when I was pregnant 18 yrs ago (although the diabetic educator/maternal fetal medicine specialist said I was presenting like a T1). Diagnosed at 12-weeks by "accident" when my mom (who is an insulin-dependent T2) noted how much I was drinking and tested my bs. I never was given a c-peptide test to see what my beta-cell levels were until just a few years ago when I started seeing an endocrinologist. Totally echo the above sentiments about making sure you have a good endocrinologist.

As for doing Disney...having done it both with my mom (T2) and as a T1 with a pump, heat can really play havoc with your blood sugar! I can be running high all day and then crash in the middle of the night. So important to have emergency supplies on hand.

 

[ppony]

Thank you for all of this information! We have not experienced a low yet, but I will make sure to have snacks on hand--just in general that is good information to have as I don't carry snacks around when we are out but will now.
I'm also grateful to hear that the walking will help. I'm not sure why that didn't occur to me as we have noticed his number go down on days he was more physically active than usual. Thank you!

I have type 2 but only just barely and also recently diagnosed. I do however experience these lows ever since I had gastric bypass surgery 20 years ago. It’s an unfortunate side-effect for me. Since he hasnt experienced one yet, he won’t know, but I can tell you w me, they come on FAST. I mean, like between the time I first start feeling the sweating and NEED for sugar NOW, and when it’s at a very serious level that needs immediate attention is 10-ish minutes. At least for me. Thankfully you’re surrounded by food at Disney, but as another poster said, if you’re stuck in a ride or in line and that low comes on, have some juice or granola bars on you. It helps! I know I get out of control eating everything I’m sight until I feel it going down. Not exactly the *optimal* way to deal w it. I feel I have no control. I hope all goes well!

 

[teachmedis]

I have type 2 but only just barely and also recently diagnosed. I do however experience these lows ever since I had gastric bypass surgery 20 years ago. It’s an unfortunate side-effect for me. Since he hasnt experienced one yet, he won’t know, but I can tell you w me, they come on FAST. I mean, like between the time I first start feeling the sweating and NEED for sugar NOW, and when it’s at a very serious level that needs immediate attention is 10-ish minutes. At least for me. Thankfully you’re surrounded by food at Disney, but as another poster said, if you’re stuck in a ride or in line and that low comes on, have some juice or granola bars on you. It helps! I know I get out of control eating everything I’m sight until I feel it going down. Not exactly the *optimal* way to deal w it. I feel I have no control. I hope all goes well!

Thank you! Yes, we have since this post experienced a low and it was very scary for us both. We got him corrected quickly, and I'll admit I really worry for it happening when I'm not around, but we do now always keep snacks and juice on hand in case.

 

[Her Dotness]

You've gotten a lot of specific advice on techniques, so I'll simply add that patience as you experiment to see what maintenance will be like for your DH is essential.

We panicked when my DH was first diagnosed T2 and kept to a much more restrictive regimen than it turned out he needed longterm. He was scared, too, and flatly refused to eat some foods he loves. Gradually, with attention to how exactly carb counting works and dosage tweaks here and there, his blood sugar became more manageable. Now, he can eat things that wildly spiked his blood sugar initially because we're pretty accustomed to what mix of portion size, protein, and fiber will balance potatoes or rice.

By June, you'll both know better what combination of testing, diet and exercise works best. Be gentle with selves and aware that you'll figure it out over time. You may not reach that point anywhere near as quickly as you'd rather, but you can get there. We did. Good luck to you both.

 

[Sunnywho]

My husband keeps to a strict diabetes diet. Allears has menus that are very helpful. Sometimes the only healthy meal is one of the kids' mickey check meals. Columbia harbor house is a good one at MK for a salmon/rice/veggies plate. Commissary at HS, Satuli Canteen at AK, Sunshine Seasons at Epcot.

 

[FunnyLady1966]

Hello! My husband was diagnosed with diabetes this month. So far his treatment has included a diet change and one insulin shot a day. We have a trip planned for June. I'm just looking for any experiences or advice in handling meals/snacks while in the bubble. Our typical park day includes a quick breakfast in our room, rope dropping, then eating lunch around 11. We take a break in the afternoon then have a dinner out around 5 o'clock. We also have a dairy allergy in the family so we're a real hoot for waitstaff. I'm interested to see if people split meals to keep portions down, what restaurants you found had good, healthy options, and in general your experiences at the parks with diabetes, or with a family member who has managed it. Thank you!

Seems Dec was the month for Diabetes diagnosis's. I'm Type 2 and meds and diet changes are working for me. Great question and I'll be pouring over this thread.

 

[FunnyLady1966]

You've gotten a lot of specific advice on techniques, so I'll simply add that patience as you experiment to see what maintenance will be like for your DH is essential.

We panicked when my DH was first diagnosed T2 and kept to a much more restrictive regimen than it turned out he needed longterm. He was scared, too, and flatly refused to eat some foods he loves. Gradually, with attention to how exactly carb counting works and dosage tweaks here and there, his blood sugar became more manageable. Now, he can eat things that wildly spiked his blood sugar initially because we're pretty accustomed to what mix of portion size, protein, and fiber will balance potatoes or rice.

By June, you'll both know better what combination of testing, diet and exercise works best. Be gentle with selves and aware that you'll figure it out over time. You may not reach that point anywhere near as quickly as you'd rather, but you can get there. We did. Good luck to you both.

This is very encouraging. I've noticed I can have things here and there without making me sick like before; due to meds and lifestyle changes.

 

[PollyannaMom]

This thread is so much help. I was recently diagnosed too and I feel so depressed. I didn't know what to do with my life, but after reading your inspiring stories I became more hopeful.

My DH was depressed at first too, but is doing well now. It does gets easier as you figure out what works for you! Along the way, we've found good recipes and products, and been touched by how accommodating friends and family have been.