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My Diabetes App Wishlist.

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:

    • … that auto-magically siphons the results from my glucose meter and logs them in a lovely, color-coded graph and logbook on my phone and on my computer.
    • Yes, I want my data on my phone and my computer, because while my phone is with me constantly and is good for everyday spot-checking, I like having the bulk of my data stored on my computer so I can see a week at a glance, a month at a glance, and a clue as to what my A1C might be at a glance.
    • I want to be able to email all of this data as a PDF (because Excel and I have a less than harmonious relationship) to my healthcare professional and whoever else I choose.  Or I can print it and put it into a blood sugar binder that I do not currently have but would have if my logbooks were this easy to compile.
    • And then, the data from my pump should just as easily be pulled off and graphed neatly alongside the data of my glucose meter.  Insulin doses plotted alongside blood sugar checks, with the option to add a smiley face when I fucking well feel like it because some days deserve a big, fat smiley face.
    • (Frowny faces and other emoticons would be a nice bonus, to add in accordance with my whims, as emoticons are sometimes the only recourse I have against a day that’s been truly and mind-bogglingly ridiculous in those ways only diabetes can be.)
    • It should go without saying, but I’ll say it:  the data from my Dexcom should follow the same sharing and integration platform, living in logbook and pie chart harmony with my glucose meter and insulin pump.  And all of that data should be visible on all operating systems EVEN A MAC HOW ‘BOUT THAT?!
    • I want to be able to look at this data in several different ways: at-a-glance, where I can see how my day is going (similar to the One Touch Reveal app); how a week looks, where I can see data broken into high-level pie charts, detailed logbooks, and a bunch of in-between options; and what I’d call an A1C level-glance, which would give me data (detailed and high-level) about how all of my numbers have tracked over the course of three months.
    • All of this data should move from my devices to the application without needing to cobble together proprietary cables.  Bluetooth is fine.  Cloud is fine.  Bluetooth cloud with a side of hazelnut iced coffee would be ideal.
    • Hey, wouldn’t it be cool if the application also synced up with my FitBit (or Shine or whatever other fitness tracker is the thing in use these days) so that I could see how exercise plots against blood sugar checks or insulin doses?  Yes, yes it would.
    • Another excellent detail would be if the application, upon access the diabetes devices, would confirm that each device is synced up with the right time zone.  So when I travel and the clock on my phone is updated, so are my devices.
    • And lastly, NO DONGLES.  I can’t handle that word. It’s too silly.

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?

PSA: Wash Your Hands.

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.

 

Looking Back: Lows in Public.

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.”

Insulin Pump Refill: In a Pinch.

Usually, I am a thorough diabetes packer. Extra test strips? Yep. Back-up insulin pen? Yes, again. Glucose tabs? I have a WHOLE JAR and will share them with the plane.

But today, I effed up my routine.

I’m currently en route to Seattle for work and there are 59 units left in my insulin pump.  To last me until Saturday night.  This may not be quite enough.

In my carry-on bag (no checked luggage because I tie my clothes into intricate, teeny pretzel-esque knots before shoving them into my suitcase), I have all of the aforementioned diabetes supplies but I forgot my vial of insulin.

HOW?  I’m usually so fastidious!  Ish!

Normally, I open a bottle of insulin and work my way through it over the course of however many weeks. While I’m using it, it sits in a makeup bag in my bathroom, along with some infusion sets and insulin cartridges.  (One stop shopping – just reach my hand in and I come out with everything I need to do a site change.  Convenient, especially if Birdzone is waiting [im]patiently for me.)  Once the bottle is kicked, I throw it away and crack open a new one.  (Not literally, though it has happened.)

Whoops on that last part because I forgot to grab a new bottle and add it to the bag when I last filled up my pump. And in the wee early morning hours today as I left for the airport, I totally forgot to get a new bottle.

So now I’m flying across the country with a half-filled insulin pump and only an insulin pen in my bag.  Stupid forgetting things brain.

insulin pump refill

Thankfully, there are some MacGyver‘ing options available to me.  I do have a bottle of Levemir and a few syringes that I could use, alongside the pen of Humalog, and I could go off-pumping until I get back home.  But I can also refill the insulin reservoir by pushing the refill needle into the top of the insulin pen, dialing back a bunch of units, and pushing the insulin into the cartridge.  My preference is to remain pumping, so I’ll be knocking out air bubbles aplenty when I do this to refill before flying home.

It’s a messy, make-shift refill, but when you’re far from home and it’s the only option, it’ll do.

Guest Post: A Do-It-Yourself Pancreas System.

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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