Sleepover: Behind The Scenes in 20 Screenshots

Sleepovers are the bane of my existence. It’s hard enough to manage T1D when V is sleeping a few feet away in her room. When she is elsewhere, we become the 24-hour on-call support and security center. Some nights are completely uneventful. Other nights we barely sleep. This is another invisible aspect of diabetes management, which most people are hardly aware of. I’m about to give you a little glimpse of what it takes to manage misbehaving BG when V is sleeping away from home.

V spent last night at her friend’s house. Before she got there, the daytime BG was fairly good. Trouble started brewing around dinner time.

So everything got back on track. Or so we thought, because at 9:52 PM…

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IOB = Insulin On Board, or amount of active insulin in her body.

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It pains me that I have to tell her to set the alarm to wake up in the middle of a night on a sleepover! What other kid has to do it? But it’s her life.
So at this point we have a plan and I am trying to get some sleep. When I open my eyes an hour later and check Dexcom, I do not like what I see, so I text V again:

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IMG_E5952.jpgI’m fighting to stay awake while doing complicated diabetes math. We need to override the pump and give more insulin because she is so high. But I don’t want to send her plummeting to a low either, especially because she is not at home!

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All that careful math, and still… She went from 400 to 225 with two arrows down in 45 minutes. And now she has a lot of active insulin in her body. Time for opposite action!

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So now it is about 1 AM. I have been sleeping poorly in 45 min increments, waking up to glance at Dexcom and make sure V is OK. I’m hoping that finally we can get things stabilized. I get to close my eyes for a couple of hrs. Then I wake up to Dexcom high alarm at 3:38 AM.

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Clearly something is not working with the pump. Absorption issue? Bubbles in the cannula? Who knows? It’s not completely useless, it’s obviously delivering some insulin, or else V’s BG would keep climbing even higher and higher. What we do know is that an injection of insulin can do wonders to bring BG into a better range. What we also do know, from the prior few hours, is that the same amount of insulin administered by the pump has been fairly useless. Understandably, V is not at all thrilled about my preferred course of action.

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V – if you are reading this, please realize that when this happens at home, I get up and give you a shot. And then I also change your pod. Usually you sleep through most of it. It sucks but it needs to be done.

I do not hesitate to put on my mean Mom hat. Also, by now we’ve been texting for nearly half an hour, it’s almost 4 fucking AM, and I have neither patience nor energy.

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I know V is really tired, mad at me, and in extra bad mood because her BG is so high. But for the record, what I really want to do is to launch into a tirade of how dare she does not appreciate how much I do for her. In all caps. But I know better because really, it is so, so hard on her. She may not believe me but I get it. So I suck it up and let her vent, try to keep my cool, and make sure everything is taken care of.

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At this point we both crash. When I wake up in the morning and check Dexcom, she’s OK. Not great, but somewhere around 200. Good enough.

By the way, the other bane of my existence is cropping and editing 20 screenshots. But if it helps you understand what we sometimes have to go through, it’s all worth it.

#makediabetesvisible 

 

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Good to go

In the past, new situations would require a more detailed explanation of T1D. My daughter has type 1 diabetes. “Here is what you should be aware of; here is what to do if she is high or low; here are the supplies; here is how to use glucagon; here is what she may need help with.”

Now that V is fully capable of handling all aspects of her diabetes care, things are different. One week before babysitting camp, I tried emailing who I thought was the right contact  to give them a heads up about V. I never got a reply and things got too busy for me to follow up. So on the day of drop off, I introduced myself to camp counselor and said this: “Just so you are aware, V has type 1 diabetes. She has all of the supplies with her and she knows what to do, she is completely independent in her care. She has her phone on her, she needs to keep it to call us if she has any questions or needs help. Please feel free to call us if you have any questions or concerns. Otherwise, she’s good to go.” The counselor asked if V had snacks for low blood sugar and I assured her that she had plenty. And that was that.

Today was back to school day. I prepared V’s supplies for health office. I like to take a minimalist approach, pack only the necessities, and refill as needed. As she is flying mostly solo, she only visits the health office if she’s unwell or runs out of supplies unexpectedly, and she always carries a glucagon and glucose tabs in her backpack.

Back up supplies, snacks and fast acting sugars will do. All fits in a relatively small box. Not pictured are a vial of back up insulin, string cheese and a couple of back up frozen gluten free meals, that go straight from our fridge/freezer to the one in health office. No letter, no flow charts, no detailed explanations.

When we arrived to school, we learned that there was a new nurse. I found her by the front gate, introduced myself and asked her where to drop off supplies. “I am V’s mom. She has type one diabetes and celiac. She’s completely independent in her care.” The nurse asked me if V was “the one with the pump” and told me she’s heard great things about her. And that a wonderful health tech who was there last year is going be there every day except Monday. Alright, this makes for a good start! I told her I’ll have V drop by and introduce herself at some point.

And that was that.

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Off to 7th and 4th grades they go. One is fake smiling. The other one is completely honest about his lack of enthusiasm. 

P.S. After V reads this post, I’m sure she can comment on how annoyed she was with the school not informing the new math teacher about her T1D, and her having to spend 10-15 minutes explaining it to her. She can also tell you how stupid diabeetus completely refused to cooperate and she fought highs all day long for no good reason. And we can also talk about our ongoing struggle of getting V to wake up to CGM alarms in the middle of the night, as it makes sleepovers more challenging.

But aside from that, she knows what to do. She’s good to go.

Milestones

***Two months. It’s been two months since my last post. I’ve been meaning to write about this or about that, but ultimately life got in the way. I think it’s my longest break between posts. I don’t know how to feel about it. I miss more regular blogging but it’s still not happening for whatever reason.

***Braces, round two. No one is excited about it. Between restrictions that come with braces (no hard or chewy foods, among other things) and restrictions that come with Celiac, V gets, well, more food restrictions. And pain and suffering. Because braces are painful and annoying. Yay…Nope.

Enjoying final corn on the cob before braces.

***1:5. This is V’s shiny new daytime insulin to carb ratio. To translate from diabetes to real world, this means that for every 5 g. of carbs V needs to give 1 unit of insulin. It is a LOT of insulin. It used to be around 1:15 back in the day. This means a few things. One, she is receiving much higher insulin dosages with a much smaller margin for error. If we overestimate the carbs, she is at a much higher risk of a bad low. If we underestimate, her BG can shoot through the roof. Both happened. We are learning to adapt and deal with it. Secondly, we are going through insulin like water. At V’s next Endo appointment will need to address changing the Rx to increase the amount because running out of insulin is about the worst nightmare anyone with diabetes can experience. Thirdly, the pods are only lasting about two days. They can last up to three, if they don’t fall off or run out of insulin. A pod can hold a maximum of 200 units. She usually burns through about that much in a couple of days now. Again, to put it in perspective, in the beginning we used to fill it up with about 75-80 units and it would last three days with some insulin to spare. Fourth, this means that unless the food is truly carb-free, such as meats and cheese, she needs to cover it with insulin. There is no more such thing is a little bite of this or a little bite of that. There is no more not needing to bolus for low carb foods that are 5 g. of carbs or less. Got carbs? Better break out some insulin.

Why so much insulin now? In one word, puberty. Raging hormones, growth, changes. And it may get worse before gets better. And speaking of worse…

***Highest A1C since diagnosis. It is what it is. And it is not really all that bad of a number. Still, it’s higher than desired. Why? In one word, puberty. We increase insulin dosages, things stabilize for a few days, and then V starts going up again. Up up up she goes and we can’t seem to catch up. But then she’ll have random days of lows, lows, lows. It’s hard to find patterns. Sometimes there are no patterns. So, FU puberty.

***Babysitter, officially. She’s 12. She got her CPR/First Aid Certification. She attended babysitting camp. I helped her draft her very first real resume. She has been helping out with neighbors’ kids for quite a while, and now she is ready for bigger parent helper/babysitting jobs.

 

Most-wanted gadget

V’s annual Celiac blood panel was done recently, and results are not great. Four years after diagnosis and her antibodies are still positive. Worse yet, the numbers crept up a little from last year. Last year things were heading in the right direction and her doctor was hopeful that with this blood work result everything would be in the negative. Not the case.

I’m really frustrated. What are we doing wrong? Obviously somewhere, somehow, V gets exposed to gluten. But where? Is there cross-contamination at home? We are not 100% gluten-free. We keep regular bread and bagels, cereal, some pre-packaged snacks, and that’s about it. All meals we make are gluten-free. We are extremely careful about cross-contamination. We have a dedicated toaster oven and a cutting board. But perhaps it’s not enough and we need to go completely gluten-free at home?

Or is the problem with restaurants where we eat? Once again, we found a few that we consider safe. However, because V does not typically have any reaction to gluten that she can feel or we can see, we have no way of telling if what she is eating is actually safe.

Or perhaps the issue was during the cruise, where getting a safe gluten-free meal proved to be rather a frustrating challenge? Since we did the blood work shortly after we returned, it may be reflective of possible cross-contamination there?

How I would love to know for sure. And guess what? There is actually a gadget out there that could help us. Nima Sensor will analyze a food sample and tell you if it contains any gluten. If we bite the bullet and go 100% gluten-free at home, we can test food at restaurants and maybe finally track down the source of cross-contamination.

There is one little glitch. The price of Nima Sensor is a cool $275. And that’s just for a starter kit. Since each food sample requires a new capsule, those will run you more. The website recommends a subscription of 12 capsules per month at a cool price of $60 per month. If we don’t do subscription, we have to pony up $72 for 12 capsules. Those capsules will go quickly if we want to test V’s meals when we dine out, even though we don’t normally eat out more than once a week.

So here I am, staring at this cool gadget, really wanting it. But it is simply too expensive.

What do we do? I have no idea. If you are reading this post and you have Celiac, I’d love for you to weigh in. I’m also curious if it’s a reasonable expectation for tests to be negative. It is really possible? Would you eat a product that, according to the label, was made on equipment shared with wheat, or is that a no-no? What about a product that is made in a facility that also processes wheat? It is unreasonable for us to think that we can live a normal life where we don’t wrap V in a bubble, allow her to eat at places other than home, and don’t have to be on edge about everything she puts in her mouth?

We are going back to the GI doctor later in the summer to discuss all this. Perhaps we can squeeze in another round of blood work just to rule out vacation cross-contamination. Aside from that, I’m at a loss.

As safe as it gets: samples that we got at the Gluten-Free Expo

 

Diabetes Blog Week Friday: More Than Diabetes

Today’s prompt is:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  

I love this topic! Screw diabetes. Instead, let’s talk about unrelated fun stuff and post gratuitous photos. Without further ado, here are some random facts about me and my T1d and gluten-free crew.

I’m a runner. I’m a very slow runner but I don’t care. I started running in 2009 and to my own amazement it became my hobby and my passion. I don’t know how I used to cope with life before I started running. So far I’ve completed 4 full marathons and 13 half marathons. I have no idea what my next race will be or when, but I’m sure it will happen sooner than later.

 

I love the ocean. I love being near, around, or in the ocean. I does not get old. When I was growing up, it was my dream to live by the ocean and now I’m living my dream. It’s also one of the reasons I love cruising. My favorite thing to do is sit on the balcony as we are sailing on the open ocean. It’s the best thing ever.

 

These two faces! We have the best doggies ever and we love them fiercely.

 

I love Start Trek TNG. Yes, Trekkie all the way. Shockingly, I don’t care about or watched Star Wars. I am probably the only person on Earth, I know. Don’t hate me, OK?

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Love this quote!

 

Last but not least, I’ll leave you with our recent family picture. Taken on a cruise, of course 🙂

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This concludes 2017 Diabetes Blog Week. I have lots of catching up to do and can’t wait to read more posts over the weekend.

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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Gluten-Free Expo Review

Disclosure: The Gluten-Free Media Group provided me with a complimentary admission to Gluten-Free Expo. All opinions are my own.

Gluten-Free expo was amazing. So many different products to explore! I was quite familiar with some products and approached those vendors as a true fangirl. And there were many more that were either new to me or that I have not had a chance to sample in the past.

All the swag! All the vendors!

Without further ado, I present to you some of my favorites.

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Everything by BFree. Like, everything. Breads, bagels, pita bread (yes, GF pita bread exists), breadsticks – everything is so good! I’ve heard of the brand before but this was my first time sampling it. A+

 

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These things are like crack. Seriously, you can’t eat just one. Very tasty and make great appetizers/party food.

 

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So many yummy things by this company that was completely new to me. See that chocolate cake mix? Tried it. Tastes amazing.

 

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So Delicious is so delicious. Also so blurry, sorry. Why yogurt, you ask? Isn’t yogurt normally GF anyway? Well, yes. I loved this for my own selfish reason. In my early twenties I developed mild lactose tolerance. A few years ago it got worse. Thank goodness I can still have cheese and most processed dairy products, as well as just a little bit of milk/cream. But I had to say good bye to yogurts and ice cream altogether, because doubling over in pain is so not worth it. So Delicious makes yummy coconut milk based yogurts and ice-creams. Trust me, I tried many and it’s not that easy to pull it off.

 

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Using the swag I brought back, I assembled V’s lunch later that day: a sandwich with BFree bread roll, So Delicious yogurt, and sun butter.

 

The following day I decided to bring V along. It felt great to be able to tell her that she could eat everything. How often does that happen? Almost never.

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Some of V’s favorites were Sun Butter and Milton’s chips. Yum!

So it’s lovely when everything is GF and I could say yes to everything. Except that stupid diabetes thing that did not agree with all of the sampling V had. We tried to estimate carbs best we could but ended up severely underestimating.

 

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Oops! We fixed it, using mainly insulin. For bonus points tell me at what time we arrived to the Expo? How were you able to tell?

 

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V was excited to assemble her lunch for the following day, using some of her favorite products.

 

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Last but not least, we got to try Keli’s Sauces. Sweet N Sour sauce was hands-down favorite. Not only is it delicious, it’s also pretty low in carbs, at 5 g per 1 TBS. V dips everything into it. It’s taken an honorable place alongside ketchup and it’s a place hard-earned.

I can’t wait to go to the Expo next year and if I’m lucky I’ll make it to other Expos. I highly recommend you do the same. If you go, I have a pro tip for you: go hungry or else you won’t be able to get through even a fraction of samples. Also,  you may not need another meal that day. Or ever.