One Night with Diabetes

You settle into bed, ready to fall asleep after another long day.

But first, you check your blood sugar, just like you do multiple times every day.

Your glucometer reads 201.

Suddenly,  you’re a little nervous to drift off to dreamland, because you just changed your insulin pod an hour earlier and you’re not quite sure if it’s the reason behind the high blood sugar.

You wonder: Could my blood sugar be high due to a miscalculation with insulin or carbs at dinner? Is it because of my stress levels? Is it because I’m dehydrated, or because I’m starting to get sick, or because my new pod’s site is on scar tissue, or because…?

Before long, you feel incredibly exhausted because you’re cycling through what seems like an endless list of reasons why you might have an elevated blood sugar and it has zapped you mentally.

You feel your eyelids grow heavy, and just before you go to sleep, you give yourself an insulin dose that should bring your blood sugar back down before long.

You experience a broken night of sleep.

One Night with Diabetes
When you read this, put yourself in the shoes of a person with diabetes…and this is just one night with the damn thing.

Since your Dexcom app is programmed to alert you when you’re over your high threshold for an extended period of time, it goes off, practically every hour, from 10 P.M. to 1 A.M.

Every time it happens, you wake up to the sound of your Dexcom alarm blaring in your ear.

You worry about waking up others in the household before you even begin to worry about your blood sugar.

You’re pretty sure it’s not a pod problem, since your blood sugar would probably be higher if that were the culprit, but you’re too damn tired to care about the cause at this time of night.

You bolus, go back to sleep, hear a high alarm, wake up, and repeat until finally your sleep stops getting interrupted by your Dexcom.

You get a few hours of broken rest.

You wake up at 6 A.M. and realize that, after all that, your blood sugar levels are still slightly elevated.

You’re pissed that your Dexcom was off by 40+ points, as confirmed by a fingerstick check.

You take more insulin, and force yourself to get up and out of bed because it’s time to start the day: Your diabetes is waiting for nothing, least of all you.

Just another night of not enough sleep and too much worry, thanks to diabetes.

Do We Take Medical Technology for Granted?

Before I dive into this post, I want to make it abundantly clear that I don’t know the answer to this question. I’m not judging how anyone reacted during the recent Dexcom G6 outage, nor am I stating that there was a “right” or a “wrong” way to handle the situation. I merely think it’s important to ask ourselves questions like this when things don’t go according to plan with diabetes care/management.

Alright, now that I’ve got THAT out of the way…

Capture
Many variations of this graphic have floated around the Internet in the days since the outage. I am not mocking anyone by posting it here; rather, I am using it as an example of ways in which we cope with diabetes difficulties. This example, to me, is an attempt at using humor to deal.

For the last several days, the DOC has been in a bit of a panic. And when I say “bit” I mean “a helluva lot”. That’s because the day after Thanksgiving, Dexcom Follow stopped working. This means that parents/caretakers who rely on the technology to monitor their child’s/loved one’s blood sugar levels were left in the dark. It sparked confusion, outrage, and downright fear, all of which only seemed to intensify over the weekend and into this week when the problem was only partially solved for most users.

Rather than coming together to support one another, the DOC swiftly divided into two camps: The first consisted of individuals who sought to gently remind others that this technology is still pretty new. It hasn’t even been around for two decades. That meant that for many years before then, people with diabetes were doing things the “old school” way, and getting by just fine. Doesn’t this mean that we should all be able to make it through unexpected technology blackouts, knowing that we have our blood sugar meters to fall back on?

The second camp was in a greater fury over the issue. This camp relied on the Dexcom G6 system because those within it simply didn’t know a life without the continuous glucose monitoring technology. For them, the outage was a bit like asking them to Google something without access to the Internet – it’s pretty much impossible, unless you’ve got an Encyclopedia handy. Oh, and it’s MUCH higher stakes, because people who don’t recognize symptoms of low or high blood sugar need this technology to work in order to stay on top of fluctuating blood sugar levels. Let’s not even get into how much is PAID for this expensive piece of medical equipment…one would argue that the high cost of supplies means that the technology should work at all times, no matter what.

If you’re like me, you can see that both of these groups have perfectly valid points. I’ve had diabetes long enough that I didn’t even use – and didn’t see the point in using – continuous glucose monitoring or insulin pumps until a few years ago. I took care of my diabetes the old fashioned way growing up: doing fingerstick checks multiple times per day, treating low blood sugars with 15 carbs then waiting 15 minutes, checking blood sugar levels about an hour after injecting insulin to make sure highs were coming down the way they should. This way of handling diabetes worked for me for a long, long time…throughout elementary, middle, and high school, right up to college.

Then I got a continuous glucose monitor (I believe it was the Dexcom G4) just before starting my freshman year of college. And I haven’t really been without a CGM device since then. It’s changed my life and helped me navigate adulthood with diabetes. Whenever I do experience periods of the technology not working the way it should, it’s infuriating because I feel like it’s not worth throwing away buckets of cash on it in those periods of inconsistency and inaccuracy.

But here’s what I’m wondering, as a result of this Great Dexcom G6 Outage of 2019…do we take this technology for granted?

Do we truly appreciate the times that it works the way it should?

Do we expect too much from something that, technologically speaking, still has a long way to go in terms of working perfectly?

Do we rely too heavily on continuous glucose monitors to provide us peace of mind when, in reality, they simply provide us with real-time updates of our blood sugar levels (i.e., it’s a stream of data)?

I don’t have answers to these questions. I can reflect on my own answers to them; furthermore, I can ponder how and why the DOC gets so divisive in these times where we should try to come together, listen to (and learn from) differing perspectives, and figure out what we can do to best support one another during trying times.

 

Do Dexcom G6 Readings Become Less Accurate as Transmitters Age?

In my unofficial opinion: Yes, Dexcom G6 transmitters lose accuracy as they approach their expiration dates. And I’m not quite sure if I’m the only one who has noticed this, or if others have also experienced this frustrating phenomenon.

Let us help you find your center www.reallygreatsite.com.png
In my unprofessional opinion, yes!

I’m writing this after dealing with a dying transmitter that was showing its signs of decay by 1) losing connectivity with my receiver and 2) reporting inaccurate blood sugar readings. I’ve definitely narrowed the problem down to my aging transmitter, which (allegedly) had one session left before it was set to expire – everything else about this particular sensor session was standard procedure. And guess what else, everything about the entire 10-day session was obnoxious, because it was rare for me to have a single day with both accurate and consistent readings. Ugh!!!

I don’t know what’s more irritating – the signal loss or the inaccuracies. Actually, I DO know what irritates me more than anything else, and that’s the fact that the transmitters don’t seem to last for as long as they’re advertised. It’s just ludicrous, especially when you take into account how much these devices cost.

Many people with diabetes rely on this, and other forms of technology, to effectively manage diabetes. And when the technology can’t be relied on to do its job, we can’t perform our jobs as well. Diabetes is draining enough – is it too much to ask for technology to be trustworthy?

How I’m Changing My Reaction to High and Low Blood Sugars

I’m doing a total system reboot…of myself.

I want to change how I react to high and low blood sugars.

Why?

Well, I think that it’s about time for me to address my intense fear of low blood sugars, but I also feel that I need to reconsider how I define high blood sugar. I’ve been sick and tired of dealing with constant highs, sprinkled with a few lows, so all of that together has motivated me to come up with a plan.

My plan is two-fold:

Step 1) Change the low and high thresholds on my CGM from 80-180 to 75-160.

Step 2) Pay closer attention to my body’s cues when my blood sugar is low.

how i'm changing my reaction to low and high blood sugars
It won’t be easy to change how I react to low/high blood sugars, but I think it’s necessary.

The first step was extremely easy to follow. I modified the settings on the Dexcom app on my phone so I’m only alerted when my blood sugar goes above 160 and below 75. I’m hearing my Dexcom alarms more often as a result, but I’m also responding to these alarms more frequently, meaning that I spend less time overall above/below my goal blood sugars. It requires a little more work and patience, especially since I experienced a lot of stress and a cold in the weeks since I’ve made the change (stress + sickness = shitty high blood sugars), but I know that it will be worth the effort.

The second step is slightly trickier. I’m the kind of person who starts treating a low blood sugar early – I’m talking as “low” as 90. And that’s not low. Unless I have several units of insulin onboard or I’m about to do a moderate intensity workout, there’s no need for me to eat anything when my blood sugar is 90. But it’s easier said than done, because I actually do start to feel low blood sugar symptoms at 90 (not all the time, but definitely a chunk of it).

So I’m hoping that this is where step one will come in handy. I’ll use my new low threshold on my CGM to reorient my body’s recognition of low blood sugars. I’m also going to work on not panicking when I start to feel low…because I think that’s the real root of my problems. In the last several years, I’ve developed – for no apparent reason – a serious low blood sugar phobia. I do everything I can to avoid them at all costs, and that’s probably contributing to my recurring high blood sugars. And that is definitely not good.

I’m over living my life on a blood sugar roller coaster…so I’m looking forward to smoother sailing with this plan of mine. Updates to come, for sure.

 

 

Why is it so Difficult to Order Life-Saving Medical Supplies?

When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

Why is it so Difficult to Order Life-Saving Medical Supplies_
My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

Doing Everything Right and Still Getting it Wrong

One of the most frustrating things about having diabetes is feeling like you’re finally understanding it, perhaps even mastering it, only for it to lash out at you and make you feel like you don’t know shit about it.

It’s when you do everything right – check and treat accordingly, eat properly, exercise sufficiently – and still get it wrong when your blood sugars don’t behave the way they should.

I really hate when this happens, but I loathe when it happens on vacation…which is exactly what happened to me last week when I was in Maine for a few days.

Things started going awry shortly after I woke up (if only I knew then that I was in for a DAY!!!). I ate breakfast and my blood sugar swiftly started to rise. But I didn’t panic, because that’s what I wanted to happen. We’d be walking all around town for part of the morning and most of the afternoon, so I wanted my blood sugar to be on the higher side so that my chances of dropping dramatically in the heat were lower. I made the right call – soon after we got downtown, I noticed a diagonal down arrow on my Dexcom app. Things were headed in the right direction…or so I thought.

Not long after I spotted the diagonal arrow, I started to feel a little low-ish. Not super shaky or anything, but just a bit disoriented. I decided to pop into my favorite candy store to fill a small bag with treats so I had something sugary to munch on that would prevent a bad low blood sugar.

Those were mistakes number one and two…not consulting with my CGM again before eating candy, and going to town on it because it was CANDY and it tasted delicious.

Doing Everything Right and Still Getting it Wrong

Within a half hour, I was rising up, up, and up. I took a small amount of insulin to correct it, not wanting to be too aggressive and risk a real low. But as I walked around the amusement park with my boyfriend and his family, I just wasn’t coming back down like I thought I would. I lingered in the mid-200s for much of the early afternoon, and by the time we stopped for lunch, I was rage-bolusing to bring my numbers down faster. I even chose a lower-carb lunch option in the hopes that it’d stave off another high blood sugar, but nope, the BG gods were not in my favor that afternoon. As we moved from the amusement park to a brewery (a drastically different change in locale, I know), I bolused once again, and then noticed that the batteries in my PDM were low.

And that actually wasn’t a problem, because I was prepared enough to have spare triple A batteries on me – thank goodness! I took the old ones out, popped the new ones in, and waited for my PDM to come back to life. And it did…but it asked me to input the month, day, and year.

Dammit. THAT’S never a good sign. I entered the information and the system accepted it, and then my pod failed immediately after, which meant that I had to ditch the brewery and the group of people that I was with to get back to the house we were staying at as quickly as possible to put a new one on.

It doesn’t get much more irritating than that.

(Later, I discovered that my PDM’s internal battery was going, and that this behavior would occur every time I replaced the triple A batteries. Needless to say, I’m awaiting a new PDM from Insulet, because it’s just not smart to continue using an aging PDM.)

By the end of this day of turbulent blood sugars and unpredictable medical device malfunctions, I was mentally beat. I felt like I’d been thrown into the roughest of ocean waters and forced to tread water for hours in order to keep my head above the surface. It’s exhausting to know that, when it’s all said and done, I was really trying to do the right things and take care of myself. I was SO DANG PREPARED with those extra triple A batteries, for goodness’ sake! But man, diabetes…just when I think I know it better than anything else, it throws me for a loop and I remember a saying from Professor Mad-Eye Moody of the Harry Potter series (of course I’m talking about Harry Potter again, don’t act surprised): CONSTANT VIGILANCE. I’ve got to be aware of my diabetes at all times. I’ve got to know how to react and when so that my diabetes will remain in my charge – not the other way around.

Supporting T1D Students with my #SensorSelfie

I’m taking a departure from a “traditional” blog post today to tell you, my dear readers, that you should consider celebrating a special holiday with me today: National Selfie Day! Before you roll your eyes at the mere idea of that, please keep reading to learn how participating will help support students with diabetes.

Dexcom has partnered with a nonprofit that is very important to me – The College Diabetes Network (CDN) – to help put some focus on the diabetes community and raise money. They’ve created the #SensorSelfie social media campaign to encourage people with diabetes to take photos of themselves proudly donning their Dexcom sensors.

947D37E4-B661-4EC5-8E02-C58D07A66110
Here’s my #SensorSelfie, which wouldn’t be complete without my cactus shirt.

But what exactly do you need to do in order to take part in the campaign? There’s four simple steps to follow today, June 21st:

  1. Take a picture showing off your Dexcom sensor
  2. Post the photo to your Facebook and Instagram pages
  3. Use the hashtag #SensorSelfie and tag @Dexcom
  4. Tell ALLLLLL your diabuddies to do the same

For every post that uses #SensorSelfie today, Dexcom will donate $1 to CDN. Can you imagine how much money could be raised if you got all the T1Ds you know to participate?

If you’re looking for some more information on this social media campaign, click this link. Otherwise, what are you waiting for? Get to snapping, posting, and tagging!