Hypo and Tongue-Tied: My Woes at Work

“Okay,” I thought to myself as I sat down for my 90 minute meeting, “My blood sugar’s sitting pretty around 100 or so. I should be able to make it the whole meeting without experiencing a drop, since the last time I gave myself insulin was about three hours ago…”

The fact that I had the audacity to think that my body/blood sugar wouldn’t play any tricks on me is laughable.

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This was my recent struggle at work. Usually, diabetes doesn’t interfere with my work whatsoever. I’m sitting, somewhat stationary, at a desk for eight hours every Monday through Friday. There was an adjustment period to the sedentary life when I first started working at my job, but it’s been more than four years now, so my body and my blood sugars are used to it. Plus, throughout the workday, I go out of my way to fit in extra steps, whether it’s using a restroom on a different floor or parking my car far away from my building’s entrance. Combined with my higher activity levels before/after work and regular workweek eating habits, I’d say that I’ve struck a balance in terms of physicality and diet that makes for an optimal environment for my diabetes to function normally/predictably.

So when I DO experience a high or low when I’m at work, it throws me off…but only for a relatively short amount of time. I’m talking like 15 minutes or so here. That’s right about the amount of time I need to come up from a low. If it’s a high blood sugar, I need even less time to rebound. I simply bolus, drink plenty of water, and move on to my next task. (Only in cases of 300+ blood sugars do I get really nervous – it’s only happened a couple of times, but I’ve had to leave work when that happens either due to feeling sick or needing to go home to deal with it.)

But things were different the other day when I was in the middle of a meeting with a colleague and I could feel the slow and steady drop of my blood sugar. Despite having monitored it closely prior to the start of the meeting, it started to coast down. Here’s the real kicker, though – I’m pretty in-tune with my body and could feel that this was not an urgent low. I figured my blood sugar was somewhere between 65 and 75. I didn’t have my CGM or meter to confirm, and I felt like I could keep the meeting going…so I didn’t do anything about it.

And in hindsight – even if it is 20/20 – I wish I had done something.

Why? Mainly because I felt that I was virtually useless in my meeting. As I reviewed each page of the 80+ slide PowerPoint, I could feel my thinking start to deteriorate. Words were tumbling out too quickly and nonsensically. I wasn’t sure if I was making a whole lot of sense to my colleague. And that’s a feeling that I can’t stand. I don’t like thinking that I may have wasted her time due to my determination to “power through” a low. It’s a perfect example of low blood sugar causing a symptom other than shakiness, sweating, or sluggishness: In this case, it also caused stubbornness.

When I finally made it back to my cubicle, I slumped down into my chair and grabbed a juice box from my low supply stash while my CGM buzzed over and over, letting me know that I was indeed low. Within approximately 8 seconds, the juice box was crushed, and I couldn’t help but think how next time I had a meeting, I’d bring one with me…just in case.

Third Time’s the Charm: Here’s How I Restarted My Dexcom G6

You GUYS! I finally did it! I managed to restart my Dexcom G6. Sometimes, a little bit of trial and error pays off.

I restarted it by following the exact same steps that I linked to in my post from a few weeks ago. It involved five simple things:

  1. Allowing my sensor to expire and remain on my body
  2. Starting a new sensor session and choosing “no code” when prompted
  3. Running the 2-hour warm-up session for only 15 minutes, then stopping it
  4. Starting a new sensor session again, without a code (if you still have the code, though, that you used when you first inserted the sensor, then enter that into your receiver/app. But don’t make up a code or enter one from another sensor – just say “no code” if you don’t have it)
  5. Allowing the 2-hour warm-up session to take place and receiving readings once it’s complete

The only thing that was different between this time and last time was the steps leading up to the restart. What do I mean by that? Well, for starters, I made sure I was attempting to restart a sensor that was giving steady, reliable readings – it seems as though it’s impossible to restart a sensor if it’s experienced any sort of error in the 10 days it’s been worn. So this means that when the sensor expired, I’d been receiving readings consistently up until the moment it expired.

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That gap represents the sensor’s second round of two-hour warm-up.

That was the main difference. The location of the sensor I restarted was the back of my arm, which may or may not have affected the restart. I also restarted without using the sensor code, which I had set aside to use but somehow misplaced prior to the attempt. I have no idea if having or not having the code makes the restart more or less successful, but I do know for sure that I got three more full days of use out of my sensor. Cumulatively, that means that I was able to wear the same sensor for almost two full weeks! It might not seem like a lot to the marathoners who are able to make older G5 sensors last 3-4 weeks (I’ve even heard of people keeping the same one on and working for 6 weeks), but it’s exciting to me to have confirmation that it IS at least possible to restart a G6 sensor.

In terms of the sensor accuracy, dare I say that it was even MORE accurate on the second go?! I don’t have proof to really back that up, but honestly, it seemed that it was right on point with all my blood sugar readings (within 5-10 mg/dL). I don’t know how to explain that, but no complaints about it here.

The only other difference that was noticeable during the sensor extension was that I was prompted to calibrate at least every 12 hours. No big deal, since I had to do that when I was on the G5. But it caught me off-guard a bit at first, because on both my receiver and within the Dexcom app, a small blood drop icon was always visible onscreen (when actively checking the app or the receiver). Initally, it wasn’t too alarming because it was merely a reminder to calibrate twice daily. But then it became an absolute nuisance when weird “calibrate after __ A.M./P.M.” messages occurred multiple times per day. I would check my blood sugar at the appropriate time and enter the result into my app/receiver, only for it to be rejected and trigger another specific time-calibration message.

To me, that indicated that my sensor’s second go-around ought to come to anend sooner rather than later. It was getting obnoxious to have to wait and check my blood sugar manually in order to appease the Dexcom messages that kept popping up. Plus, it came down to my comfort levels with wearing a sensor for a certain length of time – I just don’t love the idea of keeping the same one on for ages.

But this was my first taste of success with restarting a sensor, so naturally, I want more of the same! I’ll definitely continue to try to extend the life of future sensors, but remember, follow the steps above at your own risk. When in doubt, simply follow protocols as outlined by Dexcom. If I experience an even more successful sensor extension, you can bet that I’ll have all the details to share with you all here.

 

 

Aim for an A1c of…What?!

All my life, I’ve been told that I should do what I can to keep my A1c levels between 6 and 6.5. This is the “ideal” range, the sort of long-term goal I should bear in mind on a daily basis.

So when my primary care doctor suggested that an A1c of 7 to 8 might be a more realistic, sustainable, and healthy zone, my jaw dropped to the floor.

He explained his reasoning for saying such a thing: Since people with diabetes obviously have different needs when compared to people without diabetes, it’s not entirely logical to expect a person with diabetes to maintain an A1c that they might have with a functioning pancreas. He said that as time goes on, it could affect cognitive abilities.

And then he said that this was the range that would be recommended to a person with type 2 diabetes – there’s no new research that indicates any difference in desirable A1c levels for a person with type 1 diabetes, so, as my doctor said, I should continue to aim for 6 to 6.5.

This was such a WTF moment for me, for a couple of reasons.

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Does anyone else feel super awkward taking selfies in exam rooms? Does anyone else even take selfies in exam rooms?!

One being that I had NO IDEA why he was saying this to me. He built up this whole explanation as to what the “new recommended A1c” is, only to inform me at the very end that it was only safely applicable to people with T2D at this time. Was he confused? Did he forget that I have type one for a minute there?

The other reason I was flabbergasted by this little discussion was that we hardly ever go into detail when it comes into my diabetes. In fact, he didn’t even ask me when my last A1c test was, or any questions regarding my insulin pump/CGM. He just asked the standard “how is your diabetes” question, to which I replied with a super-lengthy, not-at-all vague response: “good”. He did put orders in for the standard array of tests that I take for each annual physical, which would inform him of my blood sugar at that moment in time, as well as my current A1c. But it was nothing that I’d be talking to him about during that appointment because the results wouldn’t be available until late in the day. So yeah, I found the whole thing to be pretty bizarre and mildly misleading.

Coincidentally, I’ll be seeing my endocrinologist in a few weeks, and let’s be real here: She’s the one doctor who can best advise me when it comes to diabetes treatments and protocols. So I’ll be sticking with her recommended A1c range for me, which I have a feeling won’t be any different from what I’ve been told all these years with diabetes.

My New Low Blood Sugar Symptom

In the last 21 years of diabetes, my low symptoms have been pretty predictable and easily recognizable: shakiness, sweating, dizziness, and sluggishness are all signs that I need some sugar, stat.

But lately, I’ve started to experience one brand-new and totally weird low blood sugar symptom. I’ve decided to dub it “fuzzy tongue”.

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“Fuzzy tongue” or “terrycloth towel tongue” is now one of my low blood sugar symptoms.

I don’t know how else to describe it other than that it feels like my tongue and lips are covered in a terrycloth towel as my blood sugar starts to fall to a certain level, usually 75 mg/dL or lower. Simultaneously, it’s a numb and tingly sensation that feels so disorienting and makes the process of chewing glucose tablets or drinking juice a little more difficult, because it feels weird to eat or drink when my entire mouth feels like it’s covered in cloth.

In fact, the first time it happened, I took to Twitter to ask the rest of the DOC if there was anyone else who had experienced something like that before. And I was comforted by the many responses I got back that assured me that I wasn’t alone in feeling this strange symptom:

“Yes, from certain lows. Sometimes I feel like my [whole] body is buzzing and fuzzy, if not fizzy. Other times, it’s like my body says, “BTDT! Got the glucose tabs! Move on!”

“YES! This is a new symptom for me too (after 17 years of treating lows)..Thought I was allergic to honey the first time.”

“This is a common one for me. Tongue and lips. I hate it”

“Sometimes I get tingly lips or tingly fingers!”

“That’s almost exclusively how I can tell that I’m low”

“YES! If it’s a prolonged low, I get tingly lips and tongue. It’s super weird and really uncomfortable.”

“I get more of the tingling/partial numbness in the lips (‘fuzziness,’ I suppose) that some have described. Usually this occurs with a bad low (under 50 mg/dL).”

Those are just a few of the replies that my initial tweet received. I found these particularly interesting, though, because one person identified it as a new symptom, too, and others implied that it’s always been an indicator of low blood sugar that’s more likely to occur with “bad” lows. In addition to helping me feel a bit more normal about the discovery of my new low symptom, I also found this to be an example of the ways in which the DOC is uniquely unified. To an outsider, this whole Twitter thread probably makes zero sense and comes across as bizarre. But to someone part of the DOC, it’s just another conversation that brings T1Ds trying to get to the bottom of a ‘betes mystery together.

So even though “fuzzy tongue” is uncomfortable, I’m glad to know I’m not the only T1D who’s felt it…and I’m very glad that my body has found another way to alert me to a low blood sugar, especially since it’s a way that makes me want to correct it more quickly than ever before.

Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

to my best buddy,
I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.

My CGM Sensor Ripoff

Oh, the Dexcom G6. You have no idea how much I simultaneously love and hate you. I love you for your painless insertion, increased accuracy, acetaminophen-blocking capabilities, and your sleeker profile. But I effing loathe you for having communication issues with the sensor on days 9 and 10 of wear…that is, if you even last that long on my body. You have serious sticking issues, old pal. Your adhesive tends to be a bit of a ripoff – both literal and figurative.

You see, I was just trying to roll over into a more comfortable position in the middle of the night when you decided right then would be the ideal time to just fall off my arm, prompting me to go from blissfully snoozing to wide awake and angry in less than 10 seconds. Way to go! It pissed me off because it happened with very little effort. I would’ve understood if I had scratched or touched it in any way, but all I had done was flip from sleeping on my left side to my right. Not fair and definitely not the ideal way to wake up.

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The ripoff sensor in question.

I wish I could say it was a one-time occurrence, but no, it happened a couple months ago. Again, it was the middle of the night and again, it was ripped off prematurely. I think that in both cases, I still had at least another three or four days of use before it was due to be changed. And even before these two middle-of-the-night ordeals, I had trouble with a freshly inserted sensor that was peeling all around the edges. What the heck is going on with Dexcom G6 adhesiveness?

Maybe this is a sign that I need to start using something in addition to an alcohol swab each time I change a sensor. Perhaps Skin-Tac or more regular usage of Pump Peelz/Grif Grips will prevent future sensor ripoffs. But still can’t help feeling ripped off, because this never really happened when I was using my G5 sensors.

The small mercy in this situation is Dexcom customer service. Kudos to their team for being understanding and willing to replace my not-so-sticky sensors…but I wish I could say that I had more faith in a G6 sensor’s ability to stay on my body for the full 10 days that it was intended to.

Favorite Things Friday: My Fave Carb Counting App

One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

I’ve written about my favorite diabetes-specific apps in the past, but I’ve also got a couple others that aren’t directly related to T1D that are mainstays on my iPhone. But there’s one in particular that 1) on the surface, has nothing to do with diabetes and 2) has been exceedingly helpful at giving me guidance when it comes to carb counting in certain situations. So without further ado, let me share the name and what I like so much about the app itself.

MyFitnessPal is my carb-counting app of choice. As the name implies, it’s an app that revolves around, well, fitness. It’s designed to provide users with a comprehensive log that tracks activity levels, food/water intake, nutrition information, and so much more. Initially, I downloaded it to keep a record of my daily calorie consumption and quickly discovered that it wouldn’t only help me figure out what dietary changes I needed to make, but it would also improve my carb counting.

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An example of MyFitnessPal in action – if I wanted to know the carb count in a cup of veggie soup from Panera, I can find it by simply searching for it within the app. 

How? The app contains a comprehensive food library – sort of like the one that’s built into the OmniPod PDM, except this one is much, MUCH more substantial. It includes foods from fast food restaurants, regular dining establishments, grocery stores, and just about any other place you could order food from. It’s been an absolute godsend in situations in which I’m really struggling to figure out how many carbs are in a dish that I’d like to order/buy. It’s not an end-all, be-all source of information – just like anything else in life, the food library isn’t flawless – but it’s a solid starting point when it comes to foods I’m less familiar with.

In addition to showing me how many carbs I consume in a day, the app has also taught me how logging simple information related to diabetes can go a long way in establishing trends, such as how different foods affect my blood sugar. The act of logging or writing something down can sound like a pain, but really, the few minutes it takes each day is worth the knowledge it ultimately imparts.

Readers, what about you? Do you use carb-counting apps? If so, which ones and why? I’m especially curious in hearing feedback from anyone who uses Figwee – I’ve heard nothing but praise for that one. Drop a comment here, tweet at me, or leave a note on my Instagram page about your favorite carb-counting app!

What is “Controlled” Diabetes?

There are few word pairs I loathe more than “controlled” and “diabetes”.

How the hell can diabetes be “controlled”? It’s not a video game to be played with a controller. There’s no character selection or “start” button. And it most definitely can’t be shut off with the flick of a switch.

On the contrary, it’s my opinion that diabetes is a bit of a wild beast that can’t simply be tamed. It doesn’t care if you follow the same routine every single day – it’ll act up for no damn reason whenever it pleases, much to the dismay of a person dealing with it.

Diabetes will do what it wants, when it wants. It will wake you up in the middle of the night because of a low blood sugar. It can throw your whole day off track because you make your plans around it. Diabetes itself comes with so many variables, between the devices and the effectiveness of medication, that it can oscillate no matter how hard you try to keep it steady. How can something like that possibly be under control? People with diabetes, like me, are given tools that are intended to help manage diabetes, certainly, but we have yet to receive something that allows us to influence it completely.

get lost in stockholm

If I had to take a stab at guessing what people thought “in control” diabetes looked at, it would be more than just the “perfect” flat-lined CGM graph. It would be more than going to bed each night and waking up every morning, having just enjoyed an uninterrupted, sound night of sleep. It would be more than having the freedom to make spur-of-the-moment choices regarding a daily routine or diet.

But for now, I’ve accepted that my diabetes is something I manage rather than control…but I also accept my refusal to let it control me.

Restarting the Dexcom G6: Attempt #2

“If there’s a will, there’s a way.” This statement totally describes the Diabetes Online Community (DOC) and its collective determination to find workarounds when it comes to extending the life of certain diabetes devices.

In November, I briefly wrote about my first stab at restarting my Dexcom G6, which was completely unsuccessful. So why bother going through with a second attempt at it? Two reasons: 1) I know that other T1Ds have been able to triumphantly restart the G6, and 2) I know that there are multiple methods out there that people have used in order to do so.

I wasn’t necessarily on the hunt for a method I hadn’t tried yet, but I stumbled across one when I was scrolling through my Instagram feed a few weeks ago. Shout-out to Leah (Instagram handle: @the.insulin.type) for sharing her technique, which you can view for yourself by clicking this link.

You’re probably wondering whether it worked for me, so let me cut to the chase and give you a super annoying answer: yes and no. I restarted the G6 according to Leah’s process, but received the “Sensor Error: Temporary issue. Wait up to 3 hours.” message, which resulted in graphs with sporadic gaps created by a lack of readings. That message popped up at least three or four times over the next 48 hours, before the “sensor failed” message notified me that I had to put a brand new sensor on and finally get rid of the restarted one.

This means that attempt #2 went better than my first try at restarting a sensor, but it was far from the flawless restarts that I know other people have experienced.

I haven’t given up hope, though. I do think that I’ll achieve success, eventually, after some more trial-and-error. I do have my theories that might explain why this didn’t go as well as I wanted it to, and it has to do with the following factors:

  • I restarted my sensor on day eight of wear
  • The sensor error message was on my receiver when I began the restart process

Next time I try this method, I want to see if it makes any difference to let the sensor expire naturally on the tenth day of wear. And if that doesn’t work, I want to at least give it another shot when the sensor and receiver are communicating properly and there are no error messages causing interference.

All in all, the experiment wasn’t a total failure. I did manage to extend the sensor’s life by about six hours – it was due to expire at 2 o’clock in the afternoon on the tenth day of wear, but the sensor didn’t fail completely until about eight o’clock that night. So TECHNICALLY speaking, I got a bit more usage out of it…but then again, those six hours (and probably slightly more than that) got wiped out by those stretches of time that I was dealing with sensor errors.

As I work through more restart attempts, rest assured that I’ll post about them so hopefully someone else will learn a method that works for them, too. But remember…restart your Dexcom G6 at your own risk. It’s not guaranteed to restart or, even if it does, to be accurate.

 

What I Wish my Dog Knew About Diabetes

Clarence the Shetland Sheepdog joined our family almost one year ago, and he’s brought us nothing but joy and unconditional love ever since then. Well, he’s also brought us a few headaches (when he has been disobedient) and some panic attacks (when he chews things he shouldn’t), but that’s besides the point – this little puppy is adored beyond his own comprehension and he fits in perfectly with us.

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But something else that Clarence doesn’t quite understand is…yep, you guessed it, diabetes. Realistically speaking, he’s probably totally unaware of it – the bliss of being a dog. I wish he had some sort of grasp of it, though, because there are times when it gets in the way of my interactions with him. How? I’ll get really specific here with my list of things that I wish my little peanut knew about diabetes:

  • I wish that he knew my pods/CGM sensors aren’t chew toys! He doesn’t often grab at them, but every now and then, he’ll notice them on my body and nudge them curiously. And since he’s a mouthy guy (being a puppy and all), he has tried nipping at them a couple of times, which always leads to me yelling at him and shoving him away. So it’d be nice if he could recognize that these things help me stay alive and shouldn’t be played with.
  • I wish that he knew how to fetch glucose tablets or raisins for me/my mother when we’re dealing with low blood sugars. Man, that’d be awesome! But knowing Clarence, if I tried to train him how to do that now, he’d be way more interested in drinking or eating anything intended to remedy a low blood sugar, rather than bringing it over to me or my mom.
  • I wish that he knew how to react, period, to any sort of blood sugar “event”. For example, if we’re out walking and I need to take a break in order to check my levels, it’d be swell if he could wait patiently rather than tug on the leash to keep the walk going. I can’t blame him, he’s just trying to continue his exercise. But if he knew WHY we had to stop – if he could understand in any sort of way – that would be hugely helpful.
  • I wish that he knew that, on the occasions that I can’t play with him, it’s not because I don’t want to. It’s because I HAVE to do something medically necessary, whether it’s change my pod or bolus for dinner, that takes my attention away from him.
  • And I wish that he knew that sometimes, diabetes can take a mental toll on me and my mom, and that there’s not much he can do about it besides continuing to be his sweet self. It’d certainly be convenient for him to realize that his impish side just exacerbates things when one of us is dealing with a stubborn high or shaky low.

That’s my list of wishes, but there’s one thing that I never had to wish for or teach Clarence when it comes to diabetes…and that’s his innate ability to bring us comfort in just about every situation with his mere presence.

I’ve said it before and I’ll say it again: Attaboy, Clarence.