Apr 17
Right now, outcomes are not reflecting the things I’m doing to manage diabetes every day. And that pisses me off.
I need to remind myself that every attempt at keeping diabetes in line is worth it. Even if the results haven’t quite caught up with the efforts.
Apr 16
I like to pre-bolus. It helps keep my post-meal blood sugar spikes from rocketing out of range and taking a sizable bite out of my overall diabetes control. (… I’m sorry. I laugh every time I type the word “control.” It’s not a word I toss around lightly when it comes to diabetes. I’m not Janet Jackson.)
The art of pre-bolusing has been instrumental in keeping diabetes shit in line.
But it only works when it works.
Last night, we ordered pizza to go along with our birthday cake for Birdzone (we rounded out the meal by eating a stick of butter each and guzzling soda – healthy! – only the butter part is a lie) and the promise was “delivery in 30 minutes.” Since pizza can be insulin’s kryptonite, I thought it wise to pre-bolus so that the initial carb influx of the pizza would be headed off by the first bolus, and then I’d chase my meal with more insulin to grab the fat-induced-blood-sugar-bump that hits about two hours later. (I don’t have a #DIYPS, so when my food choices edge towards pizza party, I have to improvise a touch.)
Basic gist? I took my insulin way too freaking early because the pizza arrived an hour later.
My Dexcom was freaking out by the time the pizza delivery man left – “Kerri, your Dexcom is vibrating like crazy over here, and says you’re low.” “Like how low?” “Like spelled out as LOW low.” – so the first piece of pizza was inhaled in a matter of seconds. The second piece went just as quickly, and then I chased my dinner with a handful of glucose tabs. (Wildberry – the perfect palette cleanser.) Pre-bolusing doesn’t always work – its success leans on timing. My pre-bolus was working right on schedule … if the pizza had arrived on time. But due to tardy carb arrival, my blood sugar was in the trenches and covered in pepperoni.
“Mawm, is this good pizza?”
“The best!” I answered her, through a mouthful of glucose tabs.
Apr 14
Dead Poet’s Society. It might be a film from 1989, but it remains one of my favorites largely in part to Josh Charles as Knox Overstreet.
(He doesn’t care that Chris is with Chet. Carpe diem! And there’s a point to this – stick with me.)
Chris and I don’t watch a lot of television, but we have been swept up in the whole binge-watching phenomenon afforded by outlets like iTunes, Netflix, and Amazon Prime. Even though we were late in getting into Breaking Bad, we caught up last year in a hurry just in time to immerse ourselves into the broadcast of the second half of season five (technology, bitch!) We didn’t watch The Wire when it was originally broadcasted, but we did rip through five seasons of that show in a hurry. And we finished True Detective last night (even though I will admit that I didn’t catch everything everyone was saying because the mumbling was oh my). Binge!!
But we don’t watch every show together. The Good Wife, which I’ve just recently started watching while doing longer, steady cardio workouts at the gym, is my go-to show to watch solo. Which brings us back to Knox Overstreet, because he’s a lead character in The Good Wife. And for at least 40 minutes every day, for the last two weeks or so, good ol’ Knox has been helping me earn my steps for the day.
Last week, though, I made the mistake of trying to binge-watch at the gym and mistakenly lost track of time and blood sugars. Instead of taking a peek at my Dexcom every ten minutes or so, I totally spaced. Which meant that I did an hour of walking/running “blinded.” I should have checked my blood sugar. Instead, I walked to the car in a staggered pattern, not unlike Billy from Family Circus, unlocking the car door and haphazardly throwing all my junk onto the passenger seat while simultaneously fumbling for my glucose meter.
“Yes, I’m sure you’re right,” in response to the triple BEEP BEEP BEEP! of my Dexcom receiver, throwing rage from inside my gym bag. My glucose meter confirmed the tri-beep with a blood sugar of 33 mg/dL.
It’s funny (not really) how the symptoms are dammed up until I see the number, and then once I am aware of my actual blood sugar, the dam gives and hot damn, panic hits. My car, for a brief moment, looked like I let a glucose tab dust genie loose from its lamp as I worked through five glucose tabs. I sat and waited until the feeling came back to my lips and my hands stopped shaking, then checked my blood sugar again to make sure I was okay enough to drive home.
The lesson learned? If I’m going to spend more than my fair share of time watching Knox Overstreet woo Nurse Carol Hathaway, I need to watch my Dexcom graph closely. Binge-watching is apparently the leading cause of Sparling low blood sugars.
Mar 25
After a long day of diabetes rule-following and making an attempt to log all of my actions [insert laugh track here], I started drumming up another diabetes application wishlist. Because I’m beyond tired of having five different devices that speak entirely different languages/require different charging cords/can’t work on the operating system I use/hate the idea of integration.
I’m in wicked curmudgeon mode today. But stay on my lawn for a few more minutes, because I have a list, a la Veruca Salt.
I want a diabetes application:
I know this kind of application isn’t flashy enough, and doesn’t benefit each respective company enough to actually work together and create something cohesive and workable, with an easy data flow and an even easier user interface, but whatever. A girl can dream, right?
Mar 24
Over the last few days, I’ve logged plenty of airplane travel hours, which are hours I don’t enjoy for a dozen different reasons, one of which being how rotted out my hands become after just a few hours on a plane. I know the air is low on humidity, which doesn’t help maintain hydration, which turns my hands into these wizened old lady hands that crack and bleed even if I’m gently pushing the lever to put my tray table into its upright and locked position.
Most of the time, I forget to bring hand lotion with me and by the time I arrive at my destination, I need to wear gloves to cover my mangled hands, but this time, I remembered. (Forgot insulin, but remembered hand lotion. Not exactly a even trade, but still.) So I spent the majority of the flight with plenty of lotion slathered on my winter-ruined hands.
“386 mg/dL.”
What the what? Sitting at my seat on the plane, I was baffled. My CGM had me at 98, not 386 – what the hell was going on? No sweaters on my teeth, no desire to pee every fifteen seconds, no need for water constantly pouring down my throat.
(I know you already know the source of my idiocy.)
I washed my hands, and checked again.
“103 mg/dL”
For almost three decades, I’ve been told to wash and dry my hands before checking my blood sugar. Clearly, hand lotion is filled with honey.
Mar 21
On the road this week, so I’m looking back at a post from June 2012 about experiencing hypoglycemia in a public place. It’s never fun to be low, but I’m always grateful for the patience and compassion of others who help see me back to being in-range.
* * *
I heard the Dexcom BEEEEEEP!ing in that frantic, “you’re low” kind of tone and my brain was swimming with confusion, so I went to the bar at the dinner event and asked for an orange juice.
“Do you want vodka in that, as well?”
“No, definitely no thank you. Just juice, please.”
The bartender filled up a small tumbler with orange juice and I downed the contents of the glass in one giant gulp.
“Thanks,” I said, and wandered off, fishing my meter from my bag to get a true assessment of how far down the rabbit hole I’d fallen.
There isn’t ever a convenient time for a low. I suppose the ones that happen when I’m at home and are only in the 60 mg/dL range and can be treated with the logical and tempered rationing of glucose tabs are better than the ones that happen in public. When you’re at a dinner event and you’re trying to meet people and make a favorable (or at the very least, coherent) impression, it’s not the most opportune time for a 38 mg/dL to make an appearance.
Once I saw the number on the meter, I became this strange, hypoglycemic bear, foraging for food and ready to growl at anyone in my way. The very nice waiter who was bringing appetizers around to the attendees ended up with an empty plate after I had my way with him. (Which sounds worse than it actually was; he only had three snacks left, but I snagged them and might have bared my teeth at him in the process.) My low symptoms were peaking, with tears in my eyes and confusion on my tongue and every skin cell buzzing with panic and adrenaline.
I do not like being low in front of people. I don’t like that momentary weakness and the vulnerability and that empty, lost look I’ve been told takes over my eyes. I don’t like that lack of control. I don’t like when my knees buckle while I trying to keep myself upright. I don’t like the look of “Are you okay?” that comes over the faces of most people, because it’s one of the very few times I have to answer, “No, I’m not.”
Thankfully, I was at a diabetes-related event, surrounded by people who either had diabetes, cared for someone with diabetes, or worked to cure diabetes. So when I casually mentioned to Jeff Hitchcock that my blood sugar was tanking and I didn’t know what was going on, I was ushered quickly and covertly to a seat at a nearby dinner table so I could make sense of things.
“I’m fine, you know. I had juice. I’ll be fine in just a few minutes,” I said, folding and refolding the napkin on the table while I waited for my blood sugar to respond to the juice.
“I know,” he said, his voice calm and reasoned. “We’ll wait.”
As it always does, the panic subsided. My blood sugar came back up into range (and went up just a bit more than it needed to, thanks to downing that whole glass of orange juice). And I was able to rejoin the dinner conversation without needing a three-minute lapse between thoughts, thankful for people who “know.”
Mar 19
Necessity is the mother of invention, and in some cases, that necessity comes with a side of love. My dear friend Dana Lewis (who threatens to wash my mouth out with soap every time I curse) and her amazing boyfriend, Scott Leibrand, have created a “Do It Yourself Pancreas System” that is revolutionizing not only Dana’s diabetes confidence, but potentially changing the landscape of diabetes management for us all. Does that seem like too-big of a statement? Read for yourself and see what patient-led innovation can really accomplish.
* * *
I took a deep breath, intentionally pulled out my pump, and bolused. He asked if it was a pager and we continued our conversation.
That was our first date, and his first introduction to my diabetes. It wasn’t the big deal that I thought it would be.
On our second date, I hated to drink the toddler sized juicy juice from my coat pocket when walking on the beach before dinner, but that wasn’t a big deal, either. He only asked if it was for low blood sugar.
On our fourth date, when he opened his trunk to grab roller blades, I noticed a Costco-sized box of juice boxes. “I thought they might be good to keep in the car in case you run out of them in your purse,” he said.
The next few months were filled with other surprising moments as Scott started learning about diabetes, not only from me, but also from the DOC. I loved when he started following some of my d-friends on Twitter and saw other perspectives on life with diabetes.
I wasn’t sure what to think about all of this, though – especially because I was falling in love with someone for the first time, and it was with someone who was not only interested in understanding diabetes, but also in helping me find ways to make it easier. I joke about using Twitter partially so my family knows I’m alive, but it’s actually pretty true. I had shared with Scott what it was like living by myself and dealing with diabetes at night. I will sleep through any type of CGM alarm, even if I place it in a glass to amplify the audio of the alerts. I talked about wanting someone to be able to look remotely and see if I was alive based on CGM numbers. Scott and I started talking about other things we’d like to do, if only we could get the data off of my CGM in real time.
Then late last year, I stumbled across John Costik on Twitter. He was talking about viewing his son’s CGM data remotely. I emailed Scott saying we should talk to John and build upon what he was doing … and Scott tweeted John before he even responded to my email!
Thanks to John, we were able to upload my CGM data in real time. We created a system that would trigger custom CGM alerts to send to both me and Scott. If I wasn’t responding to CGM alarms and “snoozing” them in the system, Scott could see what my BG was and decide if he needed to call and check on me. If I was responding to alarms, he didn’t need to do anything except send e-hugs for lows.
We added a feature to the system to plug in how much insulin was in my body and how many carbs I had eaten. This enables me to track my BGs after a meal more accurately, and project if I am likely to go high or low. When my BGs come in higher or lower than estimated (for any reason), it shows me how far out of range I am projected to go and what I need to do to fix it (with an additional bolus for a projected high or using temp basals or carbs for an impending low). It also tell me how long I have before I drop below 80, to figure out if I have time to do a temp basal or if carbs are the best option to prevent a low.
We started calling it the “do it yourself pancreas system”, or #DIYPS.
Before #DIYPS, it took more guessing to try to prevent or fix a low without causing a rebound. #DIYPS’s calculations help me reduce the extra carbs I use for lows by allowing me to more precisely use temp basals. It’s also brought my average blood sugar down and reduced total time spent high or low. You can see the difference from before I started using the system, and after, by looking at my 30-day trailing estimated average glucose (eAG).
#DIYPS is especially helpful during those “oh no” (or something that involves soaping your mouth afterward) moments – like when you put in a new pump site and two hours later you get a “no delivery” alarm. I had this happen last week; my BGs were rising suddenly, I supposedly had insulin on board, but in reality my pump hadn’t been able to deliver my basal insulin for the last two hours, and the corrections hadn’t really gone into my body either. I didn’t know if any of the insulin had gone in or how high I was going to rise.
Previously, I would have guessed and hoped for the best. With #DIYPS, I was able to use the system’s constant re-calculation of my data to safely give a big correction bolus to replace the un-delivered basals & boluses from the past two hours, and use it to come down to a safe level. In this case, I managed to level off flat in the mid-90s for the next few hours. Of course, this all had happened after midnight – so the other great benefit of #DIYPS in this situation was feeling like I could go to sleep safely. Even with a lot of insulin on board to correct this who-knows-how-high BG, I could trust #DIYPS to alarm and wake me up if I was projected to go out of range.
You can read more about how #DIYPS works here (and why it’s not an artificial pancreas), and Scott’s perspective on it here. We’re not done, and we’re hoping to partner with folks who are interested in helping us build on the system. But we are not waiting until an artificial pancreas is out on the market to make the quality of life with diabetes better. Right now, the #DIYPS user interface is pretty simple. But, my biased opinion is that it’s incredible – how can it not be when it gives me the peace of mind of being able to sleep safely at night?
#DIYPS – and Scott – have also taught me that just because I can do something myself, doesn’t mean I have to. Yes, I can do all the calculations #DIYPS does, but I don’t have to spend as much time thinking about it now over the course of the day (although I do validate any action I take with my own assessment of my CGM data or BG reading). Reducing the cognitive load of diabetes means I have more time and energy to spend living my life. That’s something else to fall in love with.
* * *
Following Dana and Scott’s journey on Twitter via the #DIYPS hashtag, or through Scott’s blog. (Because Dana does not blog. She changes the world via Twitter. Although she can be gently asked to guest post, which is why I’m so happy she bit the blogging bullet and shared her story here today. Thanks, Dana!! And look – I didn’t curse at ALL through this whole write-up!)
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