Lesson learned

As we drove into a small town for V’s travel swim meet, we passed a hospital with the ER. I took a note of it. I don’t know what non-T1D parents notice when they come somewhere new. Architecture? Restaurants? Me, I want to know where the hospital is. Because while we never needed it before, you never know…

This was going to be a fun weekend, V’s first travel swim meet. It was in a small town in a middle of nowhere, about two-hour drive from home. We decided to make it a girls’ trip, just V and I, and V was excited to spend time with her teammates.

As I packed all the diacrap for the trip, I followed the usual formula of packing extras to be prepared for pods to fail, Dexcom sensors to get ripped off, insulin to be accidentally left in the sun to go bad, and all other imaginable and unimaginable catastrophes that could wreak havoc with diabetes management. But as I picked up a bottle of Zofran, I set it down. Nah. We’ll only be a couple of hours away. What are the chances we will need it?

The first day of the meet went well. In the afternoon, we retreated to our hotel room to rest. Then we headed out to meet the rest of the team for dinner in a nearby restaurant. There were not many restaurant options. I fretted about being able to get something gluten-free for V, called the restaurant, confirmed that our choices were slim. V was uncharacteristically indifferent about it. “I’m not really that hungry.” She was perfectly happy to have a soda and then we’d get her something else from a supermarket next door. As we sat down and started to look at the menu, V said that her stomach was hurting a little and she did not want to drink even soda. Then she got up and disappeared for a few minutes. When she came back she motioned to me to come outside to talk and informed me that her stomach was hurting, so she went to the bathroom and threw up. But now she was feeling better, so she’ll just take it easy.

Well, crap. I started wondering if she possibly got “glutened” during the meet. I should not have allowed her to have those nachos. Yes, I checked the ingredients and it seemed OK, but I really should not have. But it’s strange that she’d react to strongly to gluten, she does not normally feel anything. Still, I shrugged it off. V went back to her table with other kids, I ordered my meal and started eating. I noticed that V made another trip to the bathroom. And another one. And one more. And one more still. She was trying to hang in there but clearly she was not feeling well. I ate my food without much chewing or tasting  so we could leave quickly. I was still clinging to hope that something V ate, combined with the heat and physical exertion, did not agree with her, and that it would pass if she could get some rest. Soon enough I was forced to face the fact: this was not accidental glutening. It was not even food poisoning. V was experiencing the worst GI virus she’s ever had in her life.

Once in the comfort of our hotel room, she began vomiting violently and frequently, multiple times per hour. Her stomach was already empty from the five rounds of vomiting in the restaurant. I begged her to drink some water but she’d have the hardest time with it. This was typical for a GI virus – she’s never able to keep anything down. Her other trademark symptom is crashing BG. Hence we always keep Zofran because it does a great job of taking the edge off of nausea and vomiting so that V can at least hydrate and get some sugar in to stabilize BG. Except that magic pill bottle was sitting on the dresser in her room, two hours away. Well, fuck. I ran out to the store next door to try to find something to decrease nausea. Came back with a bottle of Pepto Bismol. Forced one dose into V with a predictable result: it came out in a spectacular projectile vomit a few minutes later.

For the moment BG was staying stable, so I reached for the ketone meter. V is not prone to developing high ketones. Except when she has a GI virus. Then her ketones can rise rather rapidly and we always monitor it very closely. Whenever V has a GI virus, it is always a wait and see if we need to head to the ER because the danger of DKA is very real. I put the test strip in the meter and…nothing. The meter battery was dead. OMFG. We had not used it in months and I did not bother to test it before we left. Now we have crossed into a much scarier territory. If I cannot monitor ketones, it’s a lot harder to tell if it’s safe to continue managing symptoms on our own or if/when we should head to the ER.

I don’t panic easily but I started to feel really worried. I asked for any tips on my local T1D families Facebook group and someone suggested if I could find a meter battery somewhere. I went to the front desk and asked if by any chance they had the battery we needed. They did not, but they told me I could buy it in a dollar store a mile or two down the road. And it was still open! I decided that leaving V alone with a puke bucket for 15-20 minutes was a risk worth taking and rushed there as quickly as I could. Once I had a functioning ketone meter, I could breathe a little and go back to “wait and see”.

Indeed, ketones started to creep up. Miraculously, BG was holding stable. And then V started to feel thirsty – another completely unexpected turn of events. Normally, under similar circumstances she does not want to touch any liquid with a ten foot pole. Initially I was really excited and encouraged her to drink. Insulin and liquids are the winning combination to avoid DKA and safely ride out the GI nastiness. But she was drinking voraciously and promptly vomiting everything up. I started restricting her water intake. She was begging me for more. I was begging her to take small sips so that at least some of the water would stay in and get absorbed. She tried to sneak into the bathroom to drink out of a faucet because she was so thirsty. I lost my shit and yelled at her because I was trying to keep her from going to the hospital!

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6 water bottles downed in that many hours

In between V’s projectile vomiting, I would replace the trash can liner and throw the one full of liquid in the big trash can outside. I would wash my hands compulsively. I went back to the supermarket next door to buy more water. Then I would Google things. I Googled directions to the ER. I double checked that they treated pediatric patients. I Googled how quickly the body starts to absorb water after drinking. (FYI, a bit of it becomes absorbed as quickly as in 5 minutes, but full absorption takes a lot longer.) I Googled signs and symptoms of dehydration. And I repeatedly kicked myself for not bringing Zofran with us. It’s only a quick little trip a couple of hours away, I said. What could possibly go wrong, I said. There will be no need for it, I said. And even if V got sick, we can always come home if we need to, I said.

Of course V was in no shape to embark on a two-hour drive home. We decided to try to ride out the night, as long as ketones and BG were cooperating. Ketones went up a little more but seemed under control. BG stayed on a higher side, so I administered insulin with abandon. V got a reprieve from vomiting for about four hours and we both were able to sleep a little. I was hoping that when she’d wake up she would feel better. Wrong. She eagerly continued to drink water and vomit it back up.

I talked to my husband and he headed out our way to bring us Zofran. It just so happened that he was taking our son to a BMX race in a nearby town, so he left earlier to come to us first. In the meantime, I decided to page Endocrinologist on call and consult. She confirmed that we were doing everything right, and together we came up with the plan. If Zofran worked to eliminate vomiting and reduce nausea, we could try to drive back home. Otherwise, we’d need to go to the hospital first and get V re-hydrated and stabilized before we could hit the road. Our drive back involved a long stretch of going through the desert with no facilities whatsoever. No stores, no bathrooms, no medical facilities of any kind. If V was not stable enough, driving back would be a really dangerous thing to do. I went to the hotel’s front desk, explained our situation, and received permission to take an extra hour to check out.

My husband arrived to the hotel at about 11 AM with Zofran. Let me tell you, this pill is fucking magic. With a single dose and within 15 minutes, the vomiting stopped. Completely and totally stopped. V was still feeling crappy but she was no longer puking. We waited an hour. No vomiting. Shortly after 12 Noon we got into the car and started our escape. We drove past the ER again. Another half hour later we went through another town with a hospital, so before we hit the freeway and the empty desert I asked V one more time if she felt well enough to continue. She assured me she did not feel like throwing up. I took a big breath and hit the accelerator. We arrived home two hours later without incident and V slept through almost the entire drive. We kept up with Zofran for another day or two. It took V a few days to fully recover, but there was not another single vomiting episode.

I don’t know how about you, but I learn best when I fall flat on my face and it really hurts. Then it is prudent to memorialize the lesson and the pain because I will NEVER EVER LEAVE ON ANY TRIP WITHOUT ZOFRAN AGAIN. Never. Fucking. Ever. We got so lucky that somehow V’s BG stayed stable and din’t crash, so we did not need to get extra sugars into her, which would have been impossible if she could not keep anything down. We got so lucky that I was able to resurrect the ketone meter and monitor ketones, and that they did not spike too much. We got so lucky that my husband was able to come to our rescue. We narrowly avoided the ER visit, with all the lovely invasive interventions that would have followed, in an unfamiliar town, with doctors having no access to V’s medical history, and with possibly questionable knowledge and experience with T1D.

Lesson learned.

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Recovering at home with best helpers ever

 

Diabetes Blog Week Monday: Diabetes and the Unexpected

It’s time for 8th annual Diabetes Blog Week! Thank you Karen of BitterSweet Diabetes for putting this together.

I need this #DBlogWeek badly. I haven’t been blogging much lately. I’ve been overwhelmed by various things in my life and blogging/social media presence/diabetes advocacy has taken a backseat. I am hoping that this week will provide an injection of fresh motivation and inspiration.

Today’s prompt is: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

The best way to prepare for the unexpected is to expect it. Ideally, you become clairvoyant and can accurately anticipate all future problems. In reality, we all learn from our mistakes. The main lesson I learned (or rather am continuously learning ) from my mistakes is to not leave without any supplies that we cannot do without for more than an hour, no matter where we are going, how close to home we will be, etc. We always carry extra supplies with us, except when I get stupid and forget about this rule. Like that day when I took V to her Endo appointment and didn’t bring her diabetes backpack. And of course her insulin pump’s pod failed there. Thankfully they were able to hook us up with an extra pod and a vial of insulin, though for a few minutes they worried that they ran out of spare pods. Or the time when I took V to a traveling swim meet 2 hrs away from home and decided to leave her Zofran behind. Because why all of a sudden would she get a stomach virus? Of course, she was hit with the worst stomach virus I’ve ever seen, and we were stuck overnight in a hotel room in the middle of nowhere, with V violently vomiting several times per hour, hardly able to keep any liquids down.  And the battery in the ketone meter was dead! We narrowly avoided a trip to the ER, only because I was able to find batteries for the ketone meter in a store nearby and my husband was able to drive to us and bring Zofran.

Cue our last vacation. I wrote earlier about the hassle of packing all diabetes stuff, or “diacrap”, as Rick aptly suggested in his comment. I packed enough pods for daily changes. Of course, who would expect that a pod would fail every day? They are supposed to last at least 2-3 days. Nevertheless, I was not taking any chances. Sure enough, we had to change a few pods in rapid succession. One day involved two pod changes in 3 hours.

The truly unexpected part? One of the pods could not handle all of the vacation excitement and fell apart. Like, literally. It was quite amazing. These things are bomb proof. They are sturdy, waterproof, designed for all kinds of abuse, and if anyone ever tried to break one apart to see what’s inside, they will testify that it is not a simple tasks. And yet, while the bottom part was still attached to V’s arm via adhesive, this happened…
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What on Earth caused this? We have no idea. We are sending this pod back to Insulet for them to examine and figure out. Perhaps it could not handle the excitement of the FlowRider?

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And here is a close-up of what a broken pod looks like. You are welcome 🙂

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Quiet before the sail

We leave on our big vacation in one week. First we fly across the country to spend a couple of days with family, then we board the cruise ship. This will be our second cruise with T1D. We know the drill. And yet I’m starting to lose my shit a little bit as we are preparing ALL the things.

V had her regular Endo appointment last month where we discussed cruise BG management strategies. Endo made suggestions re: some dosage adjustments. But her main recommendation for V was to remain active. Last cruise was 5 days long and she spent the majority of it running high. She felt it and it was not pleasant. We could let it go for 5 days, but this upcoming cruise is 9 days. Running high for 9 days straight is not going to work. We’ve been talking about being more reasonable with food, being even more aggressive with insulin, and about the added importance of moving around. We’ll have to take walks around the ship. There are other fun active things to do onboard and there are more choices than on our last cruise. And we’ll get off the ship a few times to go to beaches and snorkel. This time it has to be different.

Then there is so much stuff to pack. So.much.stuff. I generally love trip planning but packing all the  medical crap is the bane of my existence. We will be in the middle of nowhere for 9 days and I feel like there is no room for error. I’m making a list and checking it twice. The Insulet rep gave us a loaner PDM (pump’s remote) to take with us as a back up in case V’s fails. How many pods to bring? I’m thinking at least 10. No, I’ll feel more comfortable with 14. Two or three vials of insulin for the pump plus a vial of back-up long-acting insulin. Syringes, strips, meters… Do we have any unexpired ketone strips? Must check. Glucagon! How many? I’m thinking at least two? Because you never know and I do not want to take any chances. AAA batteries. Dexcom sensors and charger. Wipes galore. And so much more. I’m half-panicking that we will forget something important or not bring enough of it. Yes there is an infirmary on the ship. No I don’t want to rely on it for anything because I have no idea if they have anything we need. WHAT IF WE FORGET SOMETHING IMPORTANT?!?!?

OK, breathe. Breathe. We got this. Need to bring some snacks for air travel and shore excursions. Also need to pack gels and glucose tabs. At least there will be easy 24 hr access to food/juice. And there are plenty of gluten-free eats on the ship.

Trip insurance was purchased long ago. In fact, it was purchased within two weeks of booking the cruise so that we could get a waiver for pre-existing conditions. With three out of four in the family living with chronic health conditions, there is no way in hell we are going on a trip without trip insurance. Have to remember to print out insurance paperwork. Should probably print out a travel letter from Endo? Though we’ve never needed it before so maybe not…

And then there are other meds and equipment including a nebulizer (because F U asthma and you never know…) Have a duffle bag that will be dedicated to medical supplies. Bought more luggage tags. Need to put tags on V’s diabetes backpack and the duffle bag and clearly label them as medical supplies. Need to make sure all devices are properly labeled.

So.much.stuff.

We got this. I am going to overpack like we are going away for a month but I will leave knowing that we have everything V needs to have a fun and safe vacation. Soon we will be back on the high seas having a time of our lives. All this prep is worth it.

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MasterLab 2016: The People

 

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I am traveling home after a full day of MasterLab in Orlando – a diabetes advocacy workshop put together by Diabetes Hands Foundation. I spent a day flying across country to spend 8 hours in workshop and then turn around and travel another day to come back, and it was worth it. I will write a little later about what I learned. Today it’s all about people.

I love my d-peeps of all types. None of us asked to join this elite crappy club but somehow we beat some serious odds and got in. Turns out it’s a club filled with incredible and awesome people. Maybe it’s the diabetes that makes them awesome? Or maybe you have to be awesome in the first place to get into the club?

Diabetes creates an instant bond and a feeling of trust between people. By the virtue of being in this elite club we have a lot in common, we speak the same language, we share similar stories. I knew some of the people from DOC (Diabetes Online Community); others were perfect strangers. I finally got to meet them in person and it was fabulous.

I loved talking to adult T1s and learning about their journey with diabetes. A few of them shared how, at the time of their diagnoses in the 70s, they were told that they would not live past 40 years old. Let that sink in. Imagine what it’s like to hear it from the doctors when you are a child, a teen or a young adult. Imagine what it’s like as a parent to have a doctor tell you that your child has 20-30 years to live, tops. And that they would die slowly from awful and painful diabetes complications.

Fortunately, treatment of Type 1 Diabetes has come a really long way. These people who were not supposed to live past 40 are living healthy, productive, active lives. And when V was diagnosed three years ago, the only message that we received was that it was going to be OK, that diabetes was manageable and that V would be able to live a normal, healthy, happy life. We never considered any other alternatives. I am so grateful for that.

It was also interesting to learn that most, if not all, PWD (persons with diabetes) I spoke with don’t care about the cure but are very excited about new treatments and technologies. There is a shared acceptance that the cure is far, far away but better treatments and technologies are here and they are making diabetes management easier, safer and more effective.

I am thankful for the opportunity to hang out with d-peeps. There is nothing like sitting down over a few drinks and having an honest talk about life with diabetes. I got to hear a few diabetes war stories too – some shocking, some funny, some a little scary. One person was concerned that she was scaring me off with all the information she and others were sharing. On the contrary! Being surrounded by people sharing their real-life experiences gives me hope for V’s future. We cannot protect V from the reality of life with diabetes, but by understanding it better we can give her the tools to do well. There I sat, surrounded by vibrant, resilient people, who surely had their ups and downs and made many mistakes along the way. Their diabetes management was not perfect and perhaps at times it was downright awful, but they found ways to live well and thrive. That’s good enough for me. No, it’s better than good, it’s inspirational.

Thank you for allowing me to into your lives and giving me a glimpse of my daughter’s future. Her future is bright.

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Disclosure: I applied for and received a scholarship from Diabetes Hands Foundation that covered my flight, hotel, transportation and registration. All opinions are mine.

Riding on Inspiration

On Saturday, we left our kids on the mountain. They learned how to snowboard while hubs and I had lunch and went sledding, without a care in the world. Typically, an event like this would require one of us to stay with V, or at the very least be nearby and available to help at a moment’s notice with diabetes care. But this time both kids were in excellent hands, as they participated in a day camp ran by Riding on Insulin . At the end of the day we came back to camp base and had dinner with the entire group of campers, families, ROI staff and volunteers.

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What an awesome day it was! ROI staff and volunteers took care of a million logistics, provided expert coaching, assisted with diabetes care, supplied lunch, snacks and dinner (including gluten-free food!), and ensured that every camper was well cared-for and had a great time.

Ready to go!

Ready to go!

They are out there somewhere, falling a lot and having fun

They are out there somewhere, falling a lot and having fun

Of course there was the obvious: safety of leaving V in competent hands; giving her an opportunity to learn a new sport without worrying about diabetes; making new friends and bonding other Type 1 kids and adults. There was a bonus: siblings and friends were welcome to attend, so V’s brother participated as well.

And then there was inspiration. We spent a day around some real diabadasses and amazing Type 3s (friends and family members of Type 1s.) A few of them recently completed an Ironman. Imagine completing an Ironman with Type 1 diabetes! I can’t think of better role models for V – people who are healthy, athletic, happy, passionate and living life to the fullest.

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Thank you ROI! We can’t wait to participate in more events with this amazing organization.

He had me at cross-contamination…

As we arrived to the restaurant for our first breakfast aboard Disney Wonder cruise ship, I surveyed the buffet and asked for assistance. At Disney, they don’t mess around with food allergies. This became clear to us as soon as we boarded the day before, as the staff were very attentive, knowledgeable and helpful. I’ve heard from other people that gluten-free dining on Disney cruises was wonderful, and our first day was certainly great. But now we were confronted with the abundance of choices of a buffet. How do we safely navigate it? At once, they summoned the chef. I explained to him that my daughter needs gluten-free food, and could he please show us what items in the buffet were gluten-free.

“I can certainly show you gluten-free items in the buffet. However, with the buffet you always risk cross-contamination. If you tell me what she wants to eat, I’ll be happy to make it for her.”

Please excuse me while I pick up my jaw from the floor. In fact, I am getting a little verklempt. Talk amongst yourselves. I’ll give you a topic: gluten-free foods are neither healthier nor low-carb. Discuss.

After I recovered from the shock, I wanted to hug him. And after he told V that yes, in fact they DO have gluten-free doughnuts, I think she wanted to hug him too. It’s not often that you come across someone in the restaurant industry who really gets Celiac, someone who understands that cross-contamination IS a big deal and that no, you can’t just take the croutons off of the salad. Our love with Ralf, chef-extraordinaire, was at the first sight. Or perhaps at the first mention of cross-contamination.

Half-way into our breakfast, Ralf came back to check on V. We started talking about all things gluten-free. He asked V if there was anything particular she really wanted to eat, something that perhaps was hard to find or make. She mentioned lasagna. Ralf started to enthusiastically think out-loud about possible ways to make it happen. “You are having dinner in my restaurant tomorrow? I’ll see what I can do.”

The following day, he presented V with this masterpiece: Lasagna made from egg batter, cheese and bolognese sauce. It was to die for. And because it did not contain pasta, it was on a lower-carb side to boot.

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We ate breakfast at Ralf’s restaurant every single day. He came out to say hi to us, brought V more gluten-free doughnuts and treated her as a princess.

Meanwhile, I decide to check every single restaurant and cafe onboard. I was determined to find a place that did not accommodate a gluten-free diet. (Nor did I expect that every dining venue would be able to do so.) Alas, my mission was a total bust. Gluten-free pizza? Sure. We just have to make sure the chef is back from break to make it. (It appears that only head chefs are allowed to deal with food allergies.) Gluten-free sandwiches? Absolutely. Gluten-free desserts? We got plenty. The only thing that they did not seem to have was gluten-free cones for the soft-serve ice-cream. Or maybe they did not have them out on the deck for everyone? Since V was managing perfectly well without I did not bother to ask.

By the way, this is what happened when V asked for a tuna sandwich with fries and fruit for lunch one day:

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On our last night, Chef Ralf prepared a surprise dinner for V: coconut crusted chicken strips. It was finger-licking good. Trust me, I am generally no fan of coconut, but it was so amazing I’d gladly gobble up the entire plate if it were mine.

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It’s been two months since our cruise but our memories are still fresh and vivid. Thank you Disney Cruise Line for providing an amazing gluten-free dining experience. Thank you for taking food allergies seriously and educating and training staff to provide guests with safe and wonderful dining experience. And a special thank you to Chef Ralf who went above and beyond to make V’s experience extra special.

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The biggest lie I ever said about Type 1 diabetes…

Before I get to my post topic…

WELCOME TO DIABETES AWARENESS MONTH!

November is Diabetes Awareness Month, which means that the lull of October is over. I was purposefully lying low, gathering energy and post ideas, because I am going to spam you every.single.day. this month. Not every post will be deep and profound because this Mama ain’t got all the time and energy it takes, and not every post will be new or mine, for that matter. But there will be something every day, either here or on my Facebook and/or Twitter page, which I will dutifully cross-post everywhere.

Without further ado, let’s return to the topic of the biggest lie that came out of my mouth multiple times about Type 1 diabetes:

“V can eat everything she wants, she just needs insulin to cover the food.”

OK, technically it is not a lie. She can have carbs and sweets and pizza and whatever else. But she can’t have everything she wants every time she wants it and not pay the consequences. It is fair to say that I was in denial about it for the longest time but recent events drove the point home loud and clear, completely shuttering my denial bubble.

A couple of weeks ago we went on a 5-day cruise. We went from our active lifestyle of rigorously working out a minimum of 3-4 days a week and a fairly balanced diet, to 5 days or rest, relaxation, and decadent dining. If you’ve ever cruised before, you know they don’t starve you there. And they aim to please – the chefs were bending over backwards to accommodate V’s gluten-free dietary needs. We tried to be reasonable – after all, no one benefits from pigging out and stuffing their face for five days straight. But we were also on vacation, so we wanted to be more relaxed about it and let V be a normal kid on vacation who can have treats and ice cream and all kinds or yummy things. And we were also a lot more sedentary. Hanging out by a pool for a couple of hours does not substitute one our of intense swim team practice or two hours of BMX clinic.

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Very quickly V’s BG started to climb up. We tried to guess on the carbs the best we could, we followed CGM trends closely and adjusted dosages accordingly, we increased background insulin, all with minimal results. Even when we increased V’s background insulin to 200% and rage-bolused with abandon, at times shattering all previous pre-meal insulin dose records, we were barely making a dent.

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For a healthy human with a functioning pancreas none of this is a big deal. For a diabetic with a broken pancreas, this is an insurmountable challenge. With decreased activity and increased eating comes insulin resistance, so the usual amount of insulin becomes insufficient. The longer the BG stays high, and the higher it is, the harder it is to bring it into a normal range. We battled high BG for five days straight. On days when V ran around the ship with her friend and spent a couple of hours at the pool, BG was beginning to normalize for a few hours here and there. On days that were more chill, we were happy to get BG closer to 200 as opposed to 300. We had to get up in the middle of the night almost every single day to administer insulin correction.  Fortunately, V was feeling OK through all this, mostly unaffected by high BG. She felt a little more tired – surely partially because of running high all the time – and was napping a lot, which of course contributed to the vicious cycle of decreased activity leading to higher BG. Our frustration eventually turned into resignation and acceptance of it being a short-term situation, and a determination to do the best we can but not worry about it too much. If our cruise were to last longer, there is no way, NO WAY it would have been OK to continue with status quo.

Here it the truth: a person with diabetes cannot live a high-carb and low activity lifestyle and be well. Of course, this lifestyle is not good for anyone’s health and can lead to all sorts of problems. However, a person without diabetes can go on a relaxing vacation and indulge, and have no immediate consequences. A person without diabetes can eat poorly and be sedentary and not develop any health issues for years, or ever. A person with diabetes will feel the adverse health consequences pretty quickly and it will only get worse with time. It is a guarantee.