Flying Blind

“So, Mom, I have a question. Umm, what’s my insulin to carb ratio?”

V remained in her seat and waited for all of her carpool buddies to exit the car before asking me a little sheepishly. And confessed that she left her PDM (pump remote) at home. This was the first time in four years of pumping that she forgot to bring PDM to school, though we’ve had a number of close calls. OK, let’s problem-solve. I told her what the ratio was. She keeps insulin and syringes at the health office, so she would be able to give herself a shot to cover lunch. I reminded her that she could go off of Dexcom data (continuous blood glucose monitor.) “Umm, I left my phone with the PDM.”

Oops. Dexcom transmits readings to her phone. If her phone is at home, she has no way of knowing what her BG readings are.

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On the left is the PDM, which also acts as a BG meter. On the right is V’s phone displaying Dexcom data. When the numbers match, it’s call a Unicorn. When BG is 100 it’s also called a Unicorn. Therefore you are looking at a rare double Unicorn and it’s a thing of beauty.

So, without access to Dexcom data she’d have to test to know her BG. I was thinking hard and fast. I just happened to have a case with extra supplies with me, which had an extra meter. I found it, turned it on to test it and… Dead battery. But wait, I had an extra battery! I was standing in the school parking lot, fumbling with the battery and I could not take it out for the life of me.

“Forget it! I think you have an extra meter in the health office.” I knew for a fact that she had a meter for ketone strips. There was a good chance she had compatible blood sugar strips with it too.

I sent her off to school and hesitated for a few minutes before driving away. It was 8:40 AM and I had to be at work by 9. I could

A. Go back home, get her stuff and bring it to her, and be really late to work. OR

B. Let her go by feel and manage with supplies she had at school. It was a short day anyway, so I’d be picking her up about 4.5 hours later.

Her morning BG was in good range, her pod would continue to deliver background insulin regardless of where the PDM was, and she had supplies at the health office. She could give herself a shot to cover lunch carbs. And there were helpful staff and other resources at school, in the event something bad were to happen. I took a big breath and decided, for better or worse, to let her fly blind, and drove off to work.

At about 12 I noticed a missed phone call from a different number and a voice message. “Mom, I’m calling from my friend’s phone. There are only ketone strips here. I don’t have test strips for this meter so I can’t test.”

Well, shit.

I took out the spare meter again, and this time I was able to figure out right away how to replace the battery. It’s amazing how much better your brain works when you are not in a big hurry. I would be picking up V and her brother from school in about an hour. She could hang in there.

As I was driving to pick up, V called me again from someone else’s phone. “Yes, I got your message. I was able to replace the battery so we can test your BG when I pick you up. I am on my way. See you in a few minutes.”

When I picked up the kids, V told me that she gave herself a shot for her lunch plus an extra couple of units just in case. I pulled out the meter and reached into the spare supplies bag to get test strips except… they were not there! Murphy’s law never fails! Back to square one. I drove the carpool buddies home and then hesitated again. We would normally drive straight to piano lesson and I had no extra time to spare. I could

A. Go home first to grab V’s stuff and be very late for piano lesson. OR

B. Continue to fly blind for another hour-plus.

V was feeling OK. She ate lunch, so she was not starving. She was not experiencing any symptoms of high or low blood sugar. We had plenty of fast acting sugar with us. I took a deep breath and again, for better or worse, decided to continue flying blind.

V turned away from me looking upset. “You have no idea how stressful it is to not know what your blood sugar is! I already felt low in the morning and treated even though I didn’t know if I was actually low!” Good decision, kiddo!

I think it’s the longest she’s ever gone not having any information about her BG and going completely by feel. I do not doubt it was very stressful for her. To be honest, I was pretty nervous too, but proceeded to drive to piano lesson anyway. I have faith in V’s ability to listen to and trust her body, and lately she has been feeling both her highs and lows more consistently. And I have faith in our collective ability to deal with whatever situation may arise. If she felt low, we would treat. And if she felt high, while it’s not ideal, we could wait an hour or two before giving a correction. It would be OK.

Piano lesson was uneventful. When we got home, V immediately beelined for her PDM and tested. 60. Whew. *

“I can’t tell you how happy I am to finally test my BG!”. Not the words you hear often from a T1 tween.

File this under “lesson learned.”

Also, file this under “all is well that ends well.”

Also, file this under “go straight to D-Mom hell for being so reckless.”

*60, while considered hypoglycemia, is not necessarily a bad number for V, nor it is necessarily an indication of her BG dropping even lower. I know of at least a few T1’s who consider 60’s to be within acceptable range for them, just as I know a number of T1’s who cannot be below 70+. Sometimes we let her ride it out in the 60’s as long as she is feeling well, not trending down, not doing any physical activity, and does not have any active insulin in her system. At times she feels utterly crappy in the 60’s, and then we treat immediately regardless of circumstances. There does not seem to be any rhyme or reason. Why? Diabeetus, that’s why!

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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 

 

Awareness, More Awareness…

Oh hi there! Come here often? I was totally shocked when I realized my last post was at the end of August. Has it really been that long? I guess I put a few things here and there on my FB page, but haven’t blogged in a while. November is Diabetes Awareness Month and in past years I’ve been blogging up a storm. This November I’ve stayed pretty quiet. I don’t have time or energy to post every day (or every month – HA!). I was not going to post anything today either but blogging material landed on my lap.

V’s diabeetus may have been feeling neglected, because just as World Diabetes Day got started on November 14th, diabeetus decided that we needed more awareness of it. To that end, Dexcom low alarm went off. And boom – one minute we are sleeping peacefully  and completely unaware, the other minute we are totally aware!

What a better way to mark Wold Diabetes Day than to battle lows in the middle of the night. (That was sarcasm.) Why was V’s BG so low? Diabeetus, that’s why.  According to all rules and logic it should not have happened. She went to bed at a solid 80 with no active insulin in her body and trend arrow holding nice and steady. She has walking pneumonia, which technically could have/should have raised her BG overnight, not lowered it. And in the past few days she’d been steadily going up overnight, even if she started with a good number before bed. We have not made any recent changes to her pump settings. We have not administered any insulin at bedtime. And yet, we had to pump her with four glucose tabs and suspend insulin delivery for an hour, and it took us about 3 hours to stabilize her BG and get it into a safe range.

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Over the course of 3 hrs alarms kept blaring. We kept getting up. V kept waking up. We poked her fingers multiple times. We could have given her more sugar right away but we did not want to over-treat and end up with an epic high, so we kept monitoring and doing it one step at a time. It was stressful and exhausting. Welcome to another night in our humble T1D adobe.

So why am I writing about this now, you may ask? Because I want to bring to light something that we don’t often talk about. What happened last night is great example of “shit happens, T1D edition.” People with diabetes have to face a lot of judgment. One reason for it is an assumption others often make that the person is doing something wrong: they are not eating well; not exercising enough or exercising too much; they are not following their doctor’s orders; they are not taking the correct amount of insulin. That surely there is a way to get BG under better control, to prevent most highs and lows, but the person is not making enough effort.*

Sure, there is always room for improvement and better glucose control. But what I want you to understand, really want you to understand, is that there are times when T1D makes absolutely no sense, follows no rules, and is completely unpredictable. Like last night, when it decided to act like a jerk, just because.

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The one thing I really want you to take away from this post on World Diabetes Day is that diabetes management has so many moving and unpredictable parts. Please don’t assume, never ever assume, that the person with diabetes or their caregiver are doing something wrong or not doing enough. And be prepared that if you ask me “why”, the only answer you may get is “diabeetus, that’s why.” Usually delivered with a shrug.

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*Disclaimer: People with Type 2 diabetes have it one hundred times worse when it comes to these types of judgments and assumptions. Sadly, sometimes it’s my fellow T1 peeps and parents who, in their defensive reactions of “I/my child did nothing to get T1D!”, throw fellow T2 brothers and sisters under the judgment bus. But that’s something to address in a separate post.

 

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.

 

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