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 Tuesday: The Cost of a Chronic Illness

Today’s prompt is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

For those of us living in the US, this is a hot, scary and depressing topic, especially considering current political climate and escalating insulin prices. Living with diabetes is expensive! In our family, we have three people living with chronic illness. We spend thousands every ear on medication, medical appointments and supplies. And we have good insurance! And don’t even get me started on the price of gluten-free food. I think I will save that rant for a separate post.

Once upon a time, before T1D and before we had kids, hubby and I tried a high-deductible plan. At that time we were pretty healthy, so we figured it was worth a shot. It was definitely a lot cheaper than a standard plan. Turned out that getting reimbursed for our upfront expenses took a really long time. They lost just about every claim we submitted. We eventually got our reimbursements, but knowing that we would have to front a significant amount of $ for even basic medical care really deterred us from seeing doctors. Thankfully nothing bad happened that year, but I clearly remember postponing appointments just so we would not have to deal with costs. How that we live with T1D and other chronic illnesses, I can’t imagine having to deal with a plan like this again. And yet, many people have to.

What advice do I have to share? Is moving an option? Somehow the rest of the developed world figured out how to provide affordable quality healthcare to their citizens.

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For those of us staying put, we need to organize and educate ourselves. First and foremost, do you understand the terms of your health insurance? How much is your monthly premium? Do you understand that the monthly premium does nothing except providing you with access to insurance, and that you are going to incur additional out-of-pocket costs? Do you know the difference between annual deductible and annual out of pocket maximum? What is your individual vs. family deductible? When does your deductible re-set? Do you know the difference between co-pay and co-insurance, and when you are charged one vs. the other? Are your medical supplies covered under pharmacy benefits or Durable Medical Equipment (DME)? What Rx is on the formulary and what meds won’t be covered? Do you have a separate deductible for your pharmacy benefits? Do you know who the in-network vs. out-of-network providers are? Do you know what procedures and equipment require pre-authorization? How often? How much is your ER copay?

Second, you need to advocate fiercely. Don’t take “no” for an answer. If you get a denial, appeal. Work with your doctors to document medical necessity. Learn the language, what to say, how to say it, and who to say it to, to get better results. Ask for help from your device reps – they often know how to get through the hurdles.

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Third, be strategic. We try to schedule medical appointments and supply orders strategically in the beginning of the year so that we can meet our family deductible spending the least amount of money possible. It worked well last year. This year it was a total fail. A similar strategy may work well toward the end of the year. If you met your deductible, and especially if you hit your annual out of pocket maximum for the year, stock up on those medications and supplies. Squeeze in that extra doctor’s appointment if you can/need to.

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Our little stockpile. Note the adorable doggie photobomb 🙂

Fourth, I’d tell you to be financially prepared and set some money aside for healthcare expenses. But I won’t tell you this. BECAUSE IF WE ALL HAD ENOUGH MONEY TO SET ASIDE TO PAY FOR OUR EXPENSIVE HEALTHCARE, MAYBE IT WOULD NOT BE SUCH AN ISSUE?! Yes, I just yelled. It makes my blood boil when some people insinuate that people with chronic health conditions don’t prioritize their healthcare expenses and instead spend money on stupid and unnecessary things. You know, like shiny new iPhones.

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Fifth, pride is stupid. If you need help, reach out. I belong to a vibrant and awesome group of local T1D families. At times people post on our Facebook page asking for a vial of insulin or some test strips to tide them over until their authorization goes through, or their insurance kicks in, or they get their paycheck. Other times people post giving away extras they no longer need. I’ve been on both giving and receiving end. Most T1D peeps will gladly help you out. I personally sleep a lot better at night knowing that if we are in a bind, I know who to ask for help.

Sixth, do your part in educating others about T1D and what it’s like to live with a “preexisting condition.” Help people understand the cost for someone with T1D just to stay alive. Your story and your voice matter. The better everyone can understand the human side of the cost of healthcare, the more we can achieve.

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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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Fully Loaded

The holidays are here and we are ready to eat all the things! Tomorrow we are having a Christmukah Eve potluck with our friends. Sunday we are having Christmas Day potluck with the same group of friends. Because why have one holiday meal if you can have two?

Last night we had company over for dinner, which gave us a good opportunity to do a dry run of holidays diabetes management. In line with how we handled Thanksgiving dinner last year, I decided to be aggressive with insulin and rely on Dexcom to monitor trends. I eyeballed the meal, overestimated the carb count, gave V a generous amount of insulin upfront, and spread out the other half of the dose over three hours. She wanted more dessert and we said yes, and gave more insulin. “Mom, do you realize I already have 11 units onboard?” “Yep. Give yourself more!”

All evening V’s BG stayed in the 130-180 range, which is fantastic. She gave herself some insulin before bed, which brought her into a nice low 100’s range for the duration of the night. It was a thing of beauty. This weekend’s goal: replicate this as closely as possible.

It was time to change V’s pod tonight. I was about to fill it with around 170 units of insulin, which normally lasts for 3 days with some extra to spare. Then I remembered about all the eating that will happen this weekend. For the very first time in three years of pumping, I loaded V’s pod with 200 units, filling it to the maximum capacity. Pod is fully loaded and we are ready!

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Wishing for good BG numbers this holiday weekend

 

 

Sound of silence

V asked to take a little break from Dexcom. Just for a day or two, she said, and then we’d put it back on. It’s been two weeks and counting. Sometimes you don’t realize how much something affects you until it’s no longer there. This break is helping me realize that I have a major case of alarm fatigue.

These two weeks have been so much quieter. No more daily high and low alerts. No more waking up in the middle of the night to false alarms. No more buzzing and beeping in the middle of various activities. Mind you, there are plenty of other beeps that keep our senses stimulated. The “Beep Beeeeep, Beep Beeeeep” of the pod, one hour after we change it or a few hours before it expires.  Or the “Click Click Click Click Click STAB!” sound of cannula insertion. Or the “SCREEEEEEEAAAAAAACHHHHHHHHHH” song of its people the pod sang to us when it failed this morning. But those are far less frequent noises compared to the daily onslaught of Dexcom alarms.

There have been times here and there I really missed our “Deckie.” V was not feeling well for a couple of days last week and I wished I had the data to better fine-tune her basal rates.  There were a couple of nights we had to get up in the middle of the night and test, instead of being able to glance at V’s BG on our phones. There were several times it would have been so much more convenient to dose by Dexcom instead of having to test. And there were a couple of times I would have treated high BG a lot more aggressively had I had Dexcom trend data to inform me of how BG was responding.

Despite mentioning here and there that she wanted to put Dexcom back on, V does not seem eager about it, and we are not pushing. Truth is, we are enjoying the sound of silence. In the meantime, we are finding value in going back to basics, staying in tune with V’s body, letting go of micromanaging BG, and using our spidey-sense to make dosing decisions. Tonight V woke up, got out of bed and came downstairs to tell me she felt really low. Indeed, she was 44. Perhaps we would have caught it much earlier with Dexcom, but we caught it anyway, treated, and back to sleep she went. A few days ago, she was 56 after intense swim practice. It would have been so much easier if we could see her BG trend on Dexcom. But V asked me if she could wait it out a little and not treat because she felt OK and because her BG often tends to shoot up after practice. I agreed. Sure enough, 15 minutes later she was 65, and settled on a solid number in lower 100’s within an hour.

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No Dexom? No problem. She scores 100 anyway!

This break won’t last forever. V’s middle school sleepover is approaching in a few weeks and at that time wearing Dexcom will not be negotiable. We will take it one day at a time.  And maybe there is room for a compromise? We could turn off all alerts altogether and use Dexcom solely for trend data. Or we could change low alert from 75 to 55, and high alert from 225 to 350, in order to not miss more serious lows or highs. Or perhaps my alarm fatigue will be diminished so much that I will be ready to go back to our old settings and put up with the alerts in exchange for easier and more precise BG management.

This time will come soon enough. Today, I am letting go.

 

 

In Diabetes Hacks We Trust

This was supposed to be another uneventful dinner at our local eatery, just me and my girl. As we sat down, V told me she felt low. Two things are noteworthy: 1) she’s just getting over a cold and her numbers have been crazy high past couple of days, but trending much better today, which actually made her BG more unpredictable, and 2) her Dexcom has been acting out and showing ??? or out of range most of the day.

She tested and her BG was 56. OK, no biggie, we are at a restaurant anyway. She asked for regular soda but I told her no, she would only be able to have a few sips anyway. We settled on one glucose tab to bring BG up just enough to be able to bolus for dinner, and she ordered a diet soda. Miraculously, at the same time Dexcom came back to life and started alarming us of the low. Yeah, thanks buddy, tell me something I don’t know, I told it. But I should not have been so short with it because of what happened next.

V guzzled down her soda, we ordered the food and she re-tested. 96 – BINGO. She pre-bolused for the food and got a soda refill while we waited for food to come out. About ten minutes later I noticed that Dexcom was showing BG of 110 and going up. How could BG have gone up that much already and still going up? One glucose tab was not enough to do this. If anything, since she gave herself some insulin but had not consumed any carbs, I’d expect her to be trending down. And then a suspicion hit me: did they refill her glass with REGULAR soda? Soda full of sugar? Because it would explain everything.

V drank just a bit of her refill, thankfully. She asked me to taste it. I can’t tell a difference between regular and diet! But then in a flash I remember reading about a diabetes hack that involved testing sugar in soda with a glucose meter. Instead of blood you put a drop of soda on the test strip. Regular soda will yield a high number. Diet soda will yield a LO reading or a meter error.

I whipped out V’s meter, fired it up and put the strip in a drop of soda. Aaaaaannnnd….Drumroll….

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OMG. She was drinking regular soda indeed. If we did not notice an upward trend and test the soda, this would have been V’s BG in an hour or so, and it would have been a monster to deal with.

I gave her a generous dose of extra insulin and we asked for a different glass of diet soda, complete with a clean straw. You bet I tested it when it came out. Meter error message confirmed it was diet. Whew. We carried on with dinner, keeping an eye on BG trends all the while. Afterwards we went for a nice long walk with the dogs. BG maxed out at 250. We can live with that!

Whoever came up with this hack, I can’t thank you enough.