The lows that have been creeping in lately need to stop. They are inconvenient at best, completely debilitating at their worst and the in-between is a muddled mess of glucose tab dust and frustration. Yesterday I had a diabetes technology fail coupled with a highly symptomatic hypoglycemic event that occurred simultaneously with a phone call to the Joslin Clinic … which sent me over to Twitter with an agenda of rage.
First, it was my Dexcom receiver that went berserk on me, telling me on both my Animas Vibe and my G4 receiver that my blood sugar was 202 mg/dL with double arrows down but after my feet weren’t responding to the “MOVE!” commands from my brain, I grabbed my meter to double-check. And saw a blood sugar of 43 mg/dL.
202 with double arrows down (on both the pump and the external receiver) is not the same as a meter reading of 43 mg/dL. #diabetestechfail
I immediately went for the glucose tabs and housed several of them. The low symptoms were intense – confusion, anger, tears, and a hand too shaky to hold the jar of tabs properly, so I held it with two hands, like those stock photos of baby panda bears drinking from a baby bottle.
Then the phone rang, and I answered it because: 1. When I’m low, I make bad decisions, and 2. It was the Joslin Clinic calling and I always answer their calls because Joslin.
And why did I answer the phone while low? b/c it was my endo calling to schedule c-peptide labwork to confirm that, yes, I have T1D.
And then the anger/adrenaline surge subsided and I was in that “weak with post-hypo panic, stupid body, knew I’d be fine in a few minutes but what the fuck” sort of fallout.
@CureT1Diabetes Rant has subsided. Post-hypo crying session in full effect. Honestly, this disease is doable until it's a fucking shitshow.
Eventually, as it always does, my blood sugar came back up and my brain tuned back into things happening on the planet. My CGM/Vibe/meter were back in alignment, showing me in the 80′s and holding steady.
Blood sugar now 81 mg/dL & all of my CGM devices finally agree with my meter. Now I wait for Joslin to call back w/lab orders to prove T1D.
Again, disclosure: I work with Animas and have a sponsorship contract. Here are more details on my disclosures. I link to my disclosures more than I link to cat .gifs, which is saying QUITE A BIT.
As I mentioned, I’m testing out the Animas Vibe. Here are my first, quick impressions after a few days using the Vibe. (What, you wanted some long, flowery introduction paragraph? I’m out of words.)
First things first. Change can be awkward and uncomfortable. When I switched from Medtronic to Animas back in 2010, I had trouble with the switch not because of the pumps themselves but because of the change, in general. Wearing an insulin pump means being connected to a small box and tubing 24 hours a day, so you really get to know that box/tubing combination. The curves and edges of the pump became something I knew by heart, and wearing a pump that was even half a millimeter different than whatever I was used to made me grouchy. It took me about three weeks to become used to wearing the Animas Ping pump, and about a month and a half to become entirely used to the differences in filling the reservoir, changing the infusion set, responding to alarms, etc. (I experienced this all over again when I took the t:slim pump for a spin over the end of the summer. The pump itself was fine but the different size/shape/process made me grumpy like this cookie and I was less accepting of the pump because it wasn’t what I was accustomed to. This isn’t a comment on which pump is superior, but a commentary on why the learning/acceptance curve, for me, is a true curve. It also illustrates my hate for change.)
I was set up on the Animas Vibe on 12/31, so I haven’t had this thing for more than a few days, but going from Ping to Vibe was simple in terms of learning curve because I’d already done that curve. I have worn an Animas Ping since 2010, so the routine is familiar. Keep that in mind as you read through my perceptions, as they are colored by familiarity. And coffee. (I had two cappuccinos with dinner. TWO!! Bees in fingers [h/t CSparl].)
CGM Integration. I was unsure how I’d feel about integration, to be honest. I like having my Dexcom separate sometimes, and things like CGM in the Cloud and Share are important to me because I most-often travel alone, so having my data streaming to the cloud is an important safety feature. But, on the whole, I don’t stream my data (with overnight exceptions as noted). Basically, I am the main person who needs access to my data.
However. (And this is a big however.) I like, and appreciate, options. I don’t have the option of ditching diabetes, but I do have options on the tools and technology I use to make sense of diabetes. I LOVE having the Dexcom data showing up on my pump screen. Love, love, love. Why? Because I always have my pump clipped to me. I didn’t realize, until a few days ago, how often I was keeping tabs on my external receiver, bringing it from room to room with me, and keeping it clipped to my purse while I was out of the house. I went for a run the day that I hooked up to the Vibe and it was exciting to bring only one device with me. With a tube of glucose tabs in my pocket and pump clipped to my hip, I was good to go. It felt liberating.
@grumpy_pumper I went for a run yesterday and it was excellent to only wrangle one device instead of two. That was a big plus.
The best part, for me, is that I can run my separate Dexcom receiver at the same time. Yes, they can run simultaneously. (No, I have no idea how that impacts the battery life of the transmitter. Nor am I certain this is a sound idea. But I’m doing it anyway.) Both the Vibe and the receiver need to be calibrated separately, but for the times when I’m away for work, I’m happy I can still make use of the Dexcom Share without getting all weird. Options where there once weren’t any at all; I’ll take it.
(And I haven’t had a chance to test the accuracy of the receiver vs. the Vibe, but since I haven’t yet upgraded my receiver to reflect the 505 algorithm [we don't have a PC], I don’t know if my comparisons would be best. Once I hijack someone’s PC and update my receiver, I’ll circle back on this.)
One concern I had about integration was whether or not I would hear the alarms on the pump. In setting up my pump, I customized my alarms to reflect a vibration for any low blood sugars and a beeping for any highs, thinking that a vibration would be good for middle-of-the-night low warnings. While I haven’t had much time to test the highs and lows (thankfully, numbers have been reasonable for the last few days), I did have one 2 am low blood sugar and the vibration woke me up. I’ll have to wait a few more weeks/months to truly test how responsive I will be to the alarms.
One other concern I have is about the color indications for the different numbers. I’m a creature of habit (see above bit about hating change) and I am used to the way that the Dexcom G4 receiver lays out blood sugars, in terms of color. Ketchup and mustard, you know? Highs are yellow, lows are red, and white means don’t touch anything because in range. However, since companies cannot sync up their shit in a way that makes things easiest for end users (aka the PWD), the CGM graph on the Vibe is entirely different than that of the G4. On the Vibe, highs are red, lows are blue, and in range is green. For me, this has been a weird change because I like at-a-glancing at my CGM throughout the day, and now I need to readjust my mindset for what “red” means.
Screen Resolution. This might seem ridiculous, but there’s a new feature on the Vibe that allows for the brightness to be turned up/down with a click. The button on the edge of the pump with the little lock (or lightbulb, or whatever that icon is) makes whatever screen you’re on brighter, or less bright, with a click. I like this more than I should, I think.
Food Database. I haven’t used the Ping meter in a few years (I switched to the Verio when it came out, and am now using the Sync), so I haven’t done much with the food database in the past. On the Vibe, the food database is built into the pump, so if I go in to give a bolus and use the EZCarb bolus, I can access a customizable database on the pump itself. I haven’t had much time to play around with this feature yet, but I plan to as I fiddle around with the pump. (One note: on the “snack” screen, the food options are all junk food. Chocolate cake, cannoli, donut holes, key lime pie, just to name a few. Who categorized these as “snacks” instead of “junk food”? Confused the small, rational part of my brain.)
To that same end about not using the Ping meter for a while now, it’s important to note that the loss of meter remote capability in the Vibe vs. the Ping did not matter to me at all. I haven’t used the meter remote option in ages, so not being able to use it with the Vibe made zero difference to me. Your preferences will vary, of course.
Wearability. For better or for worse, this pump does not feel different on my body because it is essentially the same physical pump shape/size on my body. Having worn the Ping now since switching to Animas, the Vibe feels the same. But, for the record, I did try a blue pump this time instead of my time worn silver one, which feels sassy. Also, not needing to carry the Dexcom receiver makes for a lighter purse. (And when my purse holds glucose tabs, my meter, an insulin pen, car keys, wallet, gum, Batman, and a deck of Crazy Mates on an average day, one less thing is awesome.)
Battery Concerns. Since it’s only been a few days, I don’t know how quickly running the CGM and the insulin pump will burn through the battery. As it stands now, my Ping went through about one battery per month (maybe every 5 weeks), and my concern is that the Vibe will require more battery change outs. Time, again, will tell.
Software Questions. I haven’t uploaded my data to Diasend yet, but I’m excited to see what the overlap looks like for my pump, CGM, and blood sugar data. My past experiences with Diasend have been good – I like the software – but I’m not the best at uploading data from my pump (read: I never, ever do it because the process is annoying). I’m hoping that future iterations of the upload process make it more plug-and-play instead of “hey, weird dongle.”
Overall, I’m excited about the Vibe. (And even if you aren’t, let me be excited, would you please? I’m appreciating the fact that this system has finally been approved in the US.) I like carrying one less device while still using the CGM and pump combination that I trust and prefer (bias, bias, remember).
I’m looking forward to sharing thoughts at the close of this trial period, and then moving forward with a Vibe of my own … even if the name of the product gives me a bit of a smirky smirk.
Due to adhesive change/skin sensitivity/dermis witchcraft, the Dexcom rash seems to be a now-reliable side effect of wearing a CGM (or anything else with adhesive ability, honestly. Sometimes a bandaid gives me the scritchy-scratch). I feel best with the Dexcom data streaming, though, so I do whatever keeps the sensor on and the itch at a minimum.
The extra cost isn’t fun, but my sensor is currently rolling through it’s second start-up cycle, so I won’t complain. Whatever frigging works, right? (Besides, a tattered Dexcom sensor feels like a diabetes Girl Scout badge. Next, I’m going for my “pile of test strips NEXT to the garbage can instead of IN it” badge.)
“Ninety-five percent of the time, I’m fine. The lows are ones I can treat myself, even if the number is really low. Usually my symptoms are shakiness or like this brain fog. When the lows are really gross, I usually cry at random. Or I throw things. No real in between. But the majority of the time, I can take care of things myself, and then it’s over. Like nothing happened.”
I tried to explain this to a friend who was asking when it’s necessary to intervene during a low blood sugar, but explaining the slide from “fine” to “holy effing low blood sugar” sounds confusing when I say it out loud.
That’s the weirdest part, for me, that whole panic-then-peace part of severe hypoglycemic events. My lows have historically come crashing in at a breakneck speed, which is part of why using a CGM has been a pivotal change for me. Getting a head’s up on when a low is happening, or being able to treat it even before it becomes a problem, has helped me feel safer in the face of hypo unawareness (a lack of low blood sugar symptoms) and fast-dropping numbers.
My endo suggested that I raise my low alarm on my Dexcom from 65 mg/dL to 80 mg/dL in efforts to catch lows earlier, and in the last month or so, I’ve had far fewer chaotic hypos. Instead, I’m grabbing the lows before they even become low, snagging a 70 while it slides versus waking up in the trenches of a 40.
Small little tweaks here and there make differences I couldn’t have imagined. … that, and I’m burning through my supply of glucose tabs with a little less vigor.
When I was younger, my pediatric endocrinologist told me that I shouldn’t be poking the syringes into the parts of my skin that didn’t hurt. “If you don’t feel the pinch of the needle, that means you have scar tissue building up, which can lead to poor absorption of the insulin.” She stayed on me about rotating injection sites, and even though I didn’t like rotating to new spots that hurt a little, she was right. The more I rotated, the better my skin felt and fewer egg-bumps of scar tissue formed under my skin.
… shame on me for not following that same rotation protocol when it comes to Dexcom sensors. I wear mine almost exclusively on my outer thigh because that’s where they feel the best, stay put the best, and are least apt to peel away before their time is up. For several years, this worked fine because I rotated within the thigh site, making sure not to reuse an area in the same month. But once the Dexcom adhesive rash started, I was screwed because the skin was taxed not just by the sensor itself, but by the residual rash.
Dexcom rash management has been better lately because of precautionary measures, but sometimes the rash flares up as a result of ten different factors (all ones that itch). Last week, I was traveling for work and kept applying Opsite Flexifix tape to my Dexcom sensor as it was starting to peel away (and yes, I had a spare sensor on me but still didn’t want to pull the one that was working. I’m a stubborn human.) I covered that thing with tape. And for two days, it was great. But then it started to turn a little red underneath the tape (not the sensor adhesive, but the skin underneath the tape). After another day, it went entirely bananas and turned bright red and started to swell.
“I can feel the heat of the infection through my jeans,” I said out loud to Chris. At which point, I realized I was a frigging idiot for not pulling the sensor off.
Off it came, and what lurked beneath was gross. (“It was the worst Dexcom rash … I ever seen!!” Actual Large Marge quote.) No way was I going to take a picture for evidence because it was horribly nasty and I’m irresponsible for letting the cost/convenience/reinstallation of the sensor supersede the integrity of my skin. What was underneath the Toughpad was completely fine, but every bit of skin that had come into contact with the Opsite tape alone was raised, red, and borderline blistering.
It took a week for that site to heal, and only after I carefully applied Neosporin and bandaged to it. Which brought me to that unfortunate realization: I suck at rotating my Dexcom sensor sites. And I need to be better about it, especially since the data is very important to me.
So I’m trying out a new spot in efforts to give my thighs some time to properly heal. For the last week, I’ve had a sensor on my lower hip and it has worked much better than I thought it would. It’s just below the belt time on my outer hip (see Gingerbread Man for placement accuracy because holidays) and despite the rub of pants, etc. it is staying put and not peeling up. I have a little bit of Opsite tape on the lower edge and so far, so good.
I hope this sensor can run its seven day course without leaving a mark. Because otherwise … itch, please.
BEEP!BEEP!BEEP! from the Dexcom receiver on the bedside table.
I heard it beeping for a long time.
Woke up with sweat pouring off my forehead and running down the side of my face, pooling up in my ears and in my collarbone. The pillow was soaked. My hair was soaked. An outline of me underneath me, the line drawn with the panicked sweat of hypoglycemia.
Panic. But tempered panic, since I was so deep into the low that I was slow in recognizing anything. My status updated slowly: This is a low. This is a bad, bad low. Eat something in a hurry or you’ll probably die.
The juice box on the bedside table was hard to assemble. Plastic sleeve around the straw, poking the straw through the foil hole … all actions I’ve done before but it took 30 seconds apiece for me to figure out how the whole thing worked. I drank the juice as fast as I could, in just a gulp or two and then I settled back into my self-made sweat lodge.
A few minutes later – maybe two, maybe twenty – Birdy arrived fresh from a nightmare, clutching her blanket and asking to sleep in our bed because she was scared. I don’t remember gathering her up, but I do remember putting her on the outskirts of my dampness, snuggling her up against her still-sleeping father. I was scared, too, still arranging blankets, trying to find a cool, dry section. I looked at the Dexcom, and it only told me I was LOW and had been LOW for a long time.
Normally, I get up and brush my teeth after a low blood sugar. Sometimes I use the hairdryer to dry my hypo-damped hair. This time, I couldn’t move my ankles without feeling the dizziness flooding up to my hairline. I used the edge of my t-shirt to mop the sweat from my ears. So gross. But necessary.
This morning I woke up chilled to the bone, the result of falling back asleep soaked to the skin and then drying off in the cool, fall night. The Dexcom told me I had risen up safely to 109 mg/dL, and my meter confirmed that result. My family bounced up and was ready to start their day, and I followed behind them, nursing the hypoglycemic hangover, grateful for technology that woke me up and for portion-controlled hypo treatment, but pretty fucking pissed off that diabetes was the nightmare last night.
Is it a glitch? A misfiring Internet tube? A mistake that they haven’t realized yet and now I’m that jerk for pointing it out? WHEN DID THIS HAPPEN?!!
Dexcom data, now available for upload on Diasend. I don’t know when this changed (last time I looked was over 18 months ago), but it’s working now. Even here, deep in Rhode Island (can’t go too deep, actually, as it’s a very small state).
After digging through the box of diabetes-related cables that lives in my bathroom cupboard, I can easily upload my glucose meter (Verio Sync), insulin pump (Animas Ping – actually not the easiest upload because it requires dongle dexterity and I can barely say “dongle” without losing it, so being dextrous is extra difficult), and continuous glucose monitor (Dexcom G4). All my data garbage, dumped into one source.
It’s not streamlined, but it’s closer, and I’ll frigging take it.
(For a list of supported devices, check out this link. And if you knew Diasend worked with Dexcom for US accounts a long time ago, sorry for being late to the game. Also, why didn’t you tell me? I am now VERY EXCITED and the CAPS BUTTON is sort of STUCK.)
BEEP!BEEP!BEEP! from the Dexcom receiver on the bedside table.
