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.

 

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.

Three Years

Three years ago our lives were turned upside down. What was supposed to be a routine well-child appointment with minor concerns about a few weird symptoms turned into a three-day hospitalization and a T1D diagnosis. 

But here we are, three years later, thriving. Going into this anniversary, I was feeling some sadness and was fully prepared to blog about it. But as I sit today typing this post, the primary feeling is that of gratitude – for excellent care V receives, the resources and tools we have to manage diabetes, the support of our family and friends, and the amazing resilience V has shown from day one.

Our first diaversary was a non-event because we were busy with life, which is a good thing! We made up for it last year by having a more elaborate celebration. Today we had plans to go out for breakfast so that V could load up on her favorite pancakes. Alas, both me and my son were sidelined by a nasty cold. Hubby took V out for a quick father-daughter date of yogurt and park instead.

Here is to three years of living well with diabetes, and to many many more ahead!IMG_3012

Diabetes Blog Week: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Healthcare: The Good…

We are very, very lucky. Our healthcare experience has been overwhelmingly good. We have a wonderful pediatrician who was instrumental in V  getting promptly and accurately diagnosed with T1D. Our children’s hospital is outstanding and we received excellent care, support and education when V was hospitalized at diagnosis. V’s Endocrinologist rocks our socks. She listens, does not rush through appointments, answers all our questions, and treats us as equal team members. The Endo clinic has two dedicated pump nurses who are very knowledgeable, experienced, efficient and kind. We have very good insurance through my husband and so far experienced minimal barriers or delays in getting the supplies V needs.

Healthcare: The Bad…

The lack of understanding of T1D by many health care professionals (HCPs) outside of diabetes specialists that we encountered is appalling. So many providers have no clue. Like this very nice nurse as CVS clinic, who treated V not long ago for an ear infection. She was trying to assess if V’s BG had been over 200 that day. I’m pretty sure she was just following the protocol. I tried to politely explain that 1. It’s an extremely lucky day if V’s BG does not go over 200 at some point, and it’s totally normal, and 2. When she’s sick, her BG will run high no matter how aggressively we try to treat it. She told us that if her BG does not come down in a few hours we will need to go to the ER. Umm…No. Seeing that I was not going to agree to this plan, she stood down a little: “If it’s still over 200 in 3 hrs, you will call your doctor, OK?” I said “sure” just to end the conversation, and can we please deal with V’s ear infection now, thankyouverymuch?

Healthcare: The Ugly…

The initial expense of diabetes – the hospital copay, ALL the insulin and supplies at once, a million appointments in the early days, and pump and CGM copays a few months down the road – was a royal bitchslap to our finances. The year of diagnosis we reached the out-of-pocked maximum for the first time ever. The cost of insulin and test strips is absurd, even with our very good insurance. Between all necessary supplies, labs and quarterly Endo appointments, we spend a lot of $ on diabetes every year. But once again, we are lucky and privileged. We have good jobs and good insurance coverage. We can manage. Other people are not so lucky.

How is it that some people have to ration insulin because they cannot afford it? Or not have access to life-saving CGM because Medicare and Medical do not cover it? Or have constant battles with insurance because of ridiculous denials, delays, and screw-ups? It breaks my heart to hear stories about people’s struggles with diabetes because they do not have access to affordable, quality healthcare. It infuriates me when insurance companies create barriers to care and access and make medical decisions based on cost vs. scientific evidence and doctors’ recommendations. Nothing gets my blood boiling more than seeing companies put profit over patients’ health, and sometimes over their lives.

Healthcare: My Wish List

Non-diabetes healthcare providers: Please educate yourselves about T1D and the difference between Type 1 and Type 2. Basic knowledge will suffice, really. When you know about signs and symptoms of T1D and DKA, you can save lives. And if you don’t know much about T1D, please don’t tell us what to do. We can sort it out with our diabetes management team. Also, you need to trust our knowledge and expertise. Chances are we know a lot more about T1D than you do.

Insulin-makers: Get a grip on the cost of insulin. Yes, we understand you need to make money and make your shareholders happy. But you are holding hostage people who cannot live without the medication you make. And your profits keep going up while insulin costs are going up and people’s out-of-pockets costs are going up. There can be a better balance. Curb your greed!

Insurance companies: Don’t try to pretend that you are in it for our health. We are not stupid. But just like drug-makers, there can be a better balance between your need for profit and our need for care and access. Do not make medical decisions or deny access to coverage because you don’t deem it medically necessary – it’s up to our doctors to decide!

Medicare and Medical: COVER CGM. It is not only medically necessary, it can be life-saving, especially for seniors and children who are particularly vulnerable to dangerous highs and lows.

In the long run, everyone benefits from being healthy.

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Image used with permission from Laddie at testguessandgo.com