There are very few things I miss about taking injections since going on a pump in 2008. Pretty much everything is easier and works better for me with my insulin pump, and I don’t miss those orange-capped spears floating around the bottom of my bag threatening to poke me while rummaging around for a lip gloss, and I don’t miss the constraints of using injected basal insulin which can’t be changed, raised or lowered once delivered. But there is one thing that I miss about injections and that is the simple fact that if you inject insulin, you know you got it. With a pump, there’s a million and one reasons to wonder if the damn thing is working or not. Case in point, Saturday night.
Saturday had me throwing a party for one of my best girlfriends in celebration of her recently born twins (that kind of party, wherein the babies are present for the shower is actually called a “Sip and See,” in case you didn’t know, and I find them to be the ideal way to celebrate a new mama because she can consume the alcohol along with the other guests at the party and quite frankly, she deserves the most). There was running around to set things up, all sorts of combinations of foods I don’t normally have (cheese plate, sushi appetizer, sandwiches and salads and of course, cake and champagne to really up the festivities), and bolusing intermittently to keep up with it all. By the time the party ended, I was over 200mg/dL with plenty of food still digesting.
I bolused another two units and got things down to a more respectable 123mg/dL, but that was as low as things went. I bolused for dinner (this was also a large meal of restaurant foods I don’t usually eat, and a combination carb-and-high-fat-meal to boot) and hoped that things would even out but they didn’t. Midnight showed a steady increase in BGs and then by 3am I was over 200. I sleepily bolused another two units. Then at 5am, I was up at 280mg/dL…with an arrow straight across. I was due for a pump change later that day but, finally exhausted by all the wondering and not wanting to postulate if it was the pump or the food or the gravitational pull of the moon causing the high I got out of bed and switched out the pump anyways. Within an hour I was settling back into a normal range with no problems. It probably had been a pump problem all along.
So why not change the site when I first realized I was staying high, despite the bolusing? Well the train of thought goes like this: Hhhmm, still high even though I bolused…well I guess there was a lot of cheese on that salad and sushi always does a real number on me and maybe I should wait it out a little but and just see if it comes down soon and oh I need to call that dinner place for a reservation tonight and wait that’s still high but not so high that I’m convinced my pump is broken because wouldn’t I totally be over 400 right now if that was the case and I’m not so I shouldn’t change it yet, right….?”
And so on. Recently, a person I work with said they change their son’s infusion site if he’s too high and has been holding steady for a few hours after the last bolus. Because if the active insulin is technically done and you’ve corrected and you’re still too high, then clearly, you’re not getting all your insulin, right? Why I don’t think like this in the moment, I don’t know but sometimes, I just push things too far with pump sites.
With injections, you never really have to wonder if you delivered the insulin or not. With pumps, they can play all sorts of mind games with you – making you wonder if they’re just “sort of” working, delivering just enough insulin to let you run high but not crazy town high…which is the same amount that will drive you just a little but nuts while you hem and haw over whether you should change your infusion site.
Note to future self in this same scenario:
Change the damn infusion site. If for nothing else than to salvage a good night’s sleep. That’s totally worth it in and of itself.
I woke up on Monday morning, all stoked that I’d been able to do my basal test the night before. I couldn’t wait to find out where my trouble spots were and how I could fine tune my overnight basal rates into perfection. I eagerly reached for my CGM and found…this.
Um. Well then. Ok! Guess that basal rate is TOTALLY WORKING FINE WITH LITERALLY NO PROBLEMS WHATSOEVER OKTHANKSBYE!
As anti-climactic as it was to see that flat line the next morning, it’s actually extremely helpful to prove that it is NOT my basal rates that are the problem. Eliminating the basal as the culprit of overnight blood sugar problems means I can definitively point a finger at boluses and food, and that’s extremely helpful. Jacob and I tend to eat dinner late because of our schedules, and although we cook very low carb, carbs sometimes get replaced by higher-fat content foods, which take hours to digest and can cause a rise much later.
Testing my overnight basal rate was as much of a pain in the arse as I thought it would be, but totally worth it to be able to eliminate at least one of the variables that could be causing issues. And with diabetes, given that there are so many factors that affect our BGs, it’s helpful to know at least the background insulin is rolling steady. I should say that ideally, you’d want to repeat a basal test a few times to corroborate your results…but we all know that’s not going to happen anytime soon for me.
As a result, I’m going to work on playing with my dinner-time boluses. It’s really challenging for Jacob and I to eat earlier than about 8pm, given our schedules these days, but to combat the latent digestion issues, I’m going to try running some higher temp basals for the few hours after eating, and perhaps bolusing ever-so-slighltly before bed on some nights when I can see a steady rise. Love playing mad scientist when I actually have some data to back it up! Well worth the challenge of Monday night to have this information. Happy Friday folks.
I’ve blogged about…I dunno maybe a thousand times about how I need to do basal testing. And then I never do it because you have to:
Eat early, and bolus precisely.
Have a low fat and low carb meal.
Not consume any alcohol.
Not work out super hard the hours before you start the test.
Need a full 8 -hour night of sleep (for an overnight basal test anyways)
And all of those things happening right now feel more unlikely than the planets aligning but lo and behold, Sunday night found me chilling at home, caught up on life, and sans husband (who would prefer something a little more exciting for dinner most nights than plain chicken breast, mushrooms and green beans – can’t blame the guy), so I threw caution to the wind and said “hey self, let’s get a little crazy tonight and ACTUALLY DO SOME BASAL TESTING.”
So, I pulled out my copy of Think Like a Pancreas by Gary Scheiner (great book, and a great dude, AADE Educator of the Year last year and a fellow member of the T1 Tribe), and set myself up for a proper overnight basal test: Low carb, low fat meal, precision bolusing, no wine, workout done hours and hours ago. And only a few episodes of the Real Housewives of Whatever City We’re On Now standing between me and a 10pm bedtime.
Finally, I’ll get some unbiased insight to some of those pesky overnight highs and early morning lows that I struggle with, and I can do some basal tweaking based on, you know, actual data, instead random assumptions driven by morning-low crankiness. That’s a win right there! Results to follow later this week!
Folks, it’s been a looong time since I’ve let almost an entire week go by without a blog post. That’s a testament to how crazy busy my life has been since I took this new amazing (but insanely demanding) job. But even though I’m writing this on Thursday night way too late and running on fumes, I just had to get this post up, because if this ain’t Friday news, I don’t know what is.
I finally made it under 6.5%. In fact, I smashed my goal and landed at a 6.2% per my labs drawn on Monday. And even though this has been the hardest time I’ve ever had getting my A1c low, it was so worth it for the moment I opened up those lab results and saw that glorious number.
If this was the Academy Awards, my acceptance speech would go something like this:
I’d like to thank GU energy gel, for curbing all 7,000 lows I’ve had in the making of this A1c. I’d like to thank my limited, but important counter-regulatory hormones for their contributions. I’d like to thank exercise for being consistently helpful in times like this. I’d like to tell pasta, pizza, and sushi to kindly bugger off for all eternity, or at least throw me a bolus bone once in a blue moon. I’d like to thank my carb counting app and my bolus wizard for forcing me to actually make this whole diabetes thing a science. I’m eternally grateful to my director, my CGM, who guides my every move. I think insulin has had enough of the glory for a while here though – ammaright? It’s like the Brangelina of the diabetes world – all shiny and heroic but THERE ARE OTHER ACTORS HERE OK?!
And I’d really, really like to thank my kind and patient husband for being the most supportive person on the planet and instead of calling me a stark raving lunatic during every meltdown I had getting to this number, just gave me a hug instead.
Take that, diabetes!
One great thing about my job is that I occasionally get to hear some of the best in the biz (and by “biz” I mean diabetes…) talk about some very high level science, advancements, and treatment regimens. I’m always curious to hear what doctors who have been doing this for decades have to say about living well with diabetes. A few weeks ago, a tenured physician in the northwest said that he’s recently had to take several patients OFF their insulin pumps due to a build-up of scar tissue. We are now finally at a time in the world of diabetes where some people have spent double decades in a row on pumps – and others also on a CGM at the same time.
As anyone who wears an infusion set knows, cannulas don’t feel like cute little kittens gently licking your skin when they go in. No, it’s a bit more intrusive than that, as the hole it makes has to be large enough to get insulin’s big-ass molecule into your bloodstream. And most of us have a favorite spot for our pump sites - you know the one that’s a little hard to reach, because it’s out of the way and not somewhere you’ll yank it out? That spot that’s started to look like the skin of an orange left out in the sun, all pock-marked and leathery? Yeah that spot. It’s tired. And the tissue under it is tired too. And if you’ve been rotating through limited sites with your pump and your CGM for a few years, you probably know what I’m talking about.
The doctor giving the talk has now encountered folks whose tissue was beat-up enough from repeated infusion sets that he had to force them to take a break from their pumps and go back to injections for a time – how long of a break he prescribed I am unsure. Perhaps indefinitely. And he said this is a very real problem in his practice, and one that he’s seeing much more often as folks with diabetes are now progressing from diagnosis to tenure on devices without a break.
This was news to me. The concept totally makes sense, but I had not considered this in my long-term thoughts about diabetes. I’m usually concerned with what the best/coolest/most accurate/up-to-date technology is, and of course also thinking about how I can best minimize my glycemic excursions. For me, that answer involves technology, and I’d be heartbroken to give it up right now, and also a lot worse off in the control department. That said, I want to be able to preserve the tissue underneath my devices so that I’m not forced to take a break at a tougher time or worse – damage my tissue in a way that would prevent my use of closed-loop system one day or another solution.
So, questions for the crowd are: 1.) What’s been your experience with this and 2.) do you know of any ways to prevent this – is rotating pump sites enough? Would love to know how others are dealing with this!
…when you are coming out of the low haze and are about to leave the house and get onto the porch ready to run some errands and then realize…you’re wearing slippers.
Fog Brain. Low Haze. Glucose Goggles. Whatever you call it, it sure can mess you up! Thankfully, I noticed in the nick of time and put on some flip flops, all respectable-like.
Ginger Vieira knows a thing or two about Diabetes Burnout – she’s been there herself many times but more importantly, she knows even more about getting out of the burnout rut. You might know Ginger from Twitter, or from her YouTube channel, or from her other books. Or you might know her as the person who has been living with diabetes and Celiac disease since 1999 but somehow also found time to get certifications in cognitive coaching, personal training, and Ashtanga yoga and set 15 records in powerlifting (no big deal). She’s amazing, and she’s an inspiration for living well with diabetes. Her new book Dealing with Diabetes Burnout: How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed Living with Diabetes shares some of Ginger’s expertise and strategies for dealing with burnout, and I tore through my copy of it over Memorial Day weekend. Today, I’m thrilled to have an interview with the fabulous author herself here on I Run on Insulin. And if you have not already, get your copy of her new book here.
I love how you described that Diabetes Burnout can take many shapes and forms and is different for each person. What are your own classic signs of burnout that you now look out for?
The most common form of burnout for me is this tired, angry little voice that pops in my head when my fingers are sore from too many finger pricks or when my Lantus injection really burns. It’s the daily things we have to do all the time and there are days when I just have this voice that’s like, “Good grief! ARG! This is so obnoxious. I would love to just have one day that was free of sharp objects tearing open my bruised and scabbed fingertips and flesh! Roar!”
And sometimes that voice hangs around for a week, sometimes several weeks. And then suddenly, it goes away for a little while. I go back into autopilot, like we all do, where we stabbed our flesh repeatedly throughout the day and think nothing of it because that’s life with diabetes.
It was fascinating to read about the time in college where you became tired of not feeling well all the time and decided to make very specific changes to your diet. Do you recall an exact ah-ha moment or was it more gradual than that?
Oh yes, the ah-ha moment was when my A1C came back at 8.1 (8.3, I can’t remember which at the moment!). I’d never seen it go into the 8s and there was no mystery as to how it crept up there. I knew I’d been eating things I didn’t need to be eating (ie: pizza, junk, and more junk), I knew I’d been drinking more alcohol than ideal for anybody, and exercise definitely wasn’t a priority. I spent the following 4 months going to yoga classes and trying to teach myself weightlifting basics. After that summer, I came back to my senior year of college ready to rock ‘n roll: I hired a personal trainer (which accidentally lead to all the powerlifting) and started getting my certification to teach Ashtanga yoga. By the end of that year, my whole world revolved around health and fitness, and it felt good!
You talk a lot in this book about our challenging relationships with food as people with diabetes. One (of many!) thing that is hard to manage is when you have made healthy food choices and then are forced to eat again – and something with carbs in it- because you ended up low. This can start the chain of sabotaging ourselves because we feel like we don’t have a choice of when or what to eat when it comes to lows. Do you have any strategies for dealing with that feeling?
Yes. I strongly believe that it’s important to remind ourselves that we do have control over the food we put in our mouths during lows. We can respond to a low in two ways: impulsively and emotionally OR thoughtfully and intellectually. We like to act like we just can’t help but eat everything in the cupboard but we know as we’re doing it that we don’t need all those carbs. I believe it really comes down to making a commitment to yourself, and saying, “I will not abuse my body with food during a low blood sugar. It is not necessary and I do control the way I treat my lows.” From there, I think it’s really important to choose very specific foods to treat lows with, instead of using just any food that happens to be around. For instance, if I’m low at 10 p.m. before bed, sure, I could go downstairs and have a bowl of cereal (which always leads to a high) or I could say, “What I really need right now is 2 glucose tabs or 4 ounces of orange juice.” Just because other food is around doesn’t mean it’s the appropriate choice for a low. Choose your “low foods” and think of them like medicine!
I loved the suggestions you have for how to have conversations with your loved ones about how to support you in the right ways. What’s a great one-liner of support that someone WITHOUT diabetes can say to their loved one with diabetes to show they care?
“Even though I don’t have diabetes, I can see how much work it is every day for you.”
With all of your sports experience, what has being successful in sports (powerlifting, yoga) taught you about being successful in living well with diabetes?
Such a good question! Learning about the discipline required to train and compete in powerlifting (even aside from diabetes) taught me that the way we treat our bodies through food and exercise has an absolute impact on so many aspects of our lives. If I’m eating junk food, I’m gonna feel lethargic and scattered. If I’m committing to getting mostly really healthy foods into my body every day, I’m gonna feel good! It taught me to take the emotional aspect away from food and just appreciate what food can do for me. And that it’s okay to enjoy a bowl of ice cream, but that I choose the ice cream thoughtfully rather than impulsively or out of rebellion against my diabetes.
It was great to reach the contributions throughout the book from other folks with diabetes – the collective experience helps us all know we are not alone. How has community support for diabetes affected your day-to-day management of the disease?
I have definitely met a few people in the DOC who I have learned a great deal from about diabetes management. Specifically, I would say that Jennifer Smith, who is a CDE and has type 1 diabetes (and works with Gary Scheiner at IntegratedDiabetes.com), really taught me how absolutely possible it is to achieve an A1C in the low 6s or high 5s through simply being extra diligent about insulin doses, thoughtful about food choices (note: I didn’t say perfect about food choices), and simply holding yourself to that standard. There are also simply a few people in the DOC who I connect with on a level that feels like true friendship, rather than peer-to-peer support, despite that we only see each other in person once per year, such as Riva Greenberg, Asha Brown, Leann Harris, and Ann Bartlett.
You have a great description at the beginning of the book of what diabetes would look like if it was actually a “job” instead of disease (24 hours a day, no breaks, no vacations). If diabetes actually was a job and you HAD to pick some “perks,” what would they be? (more mindfulness of what’s going in to your body, for example? Better understanding of foods?)
Oooh! Clever question! Boy. That’s a tough one. It’s fun to try and wonder what I would be doing with my life if I didn’t have diabetes, or how my personality might be different. I wonder if I would’ve gotten into powerlifting and weightlifting if I didn’t have diabetes, because part of my motivation was definitely to prove that diabetics could be athletes. I also wonder what the heck I would be writing about if I didn’t have diabetes because I’ve always been a writer. I’ve wanted to write books since the 2nd grade (I was diagnosed with type 1 in 7th grade). I know I’m not directly answering the question but I guess that’s because I think the “perks” of diabetes are so different from person to person…and for those who think diabetes has brought nothing good to their life, I’d suggest taking a deeper look! It’s easy to see the negatives that diabetes brings to our lives, but we have to create the positives and be open to them happening.
If your readers take away only one lesson or inspiration from the book, what would you hope it to be?
That it’s totally okay to be sick and tired of diabetes. That it’s totally okay to slack-off for a week or two, or a month! That it’sokay to be burntout! And we should expect to feel burnout every now and then. It’s okay. It’s not failure. It’s realistic.
A funny thing happened the other week in Portland. And by funny, I mean really unfortunate and pretty gross: We had a “boil your water” warning issued throughout the city because our local reservoir tested positive for e. coli bacteria. Charming. And super inconvenient. And yucky all around. Jacob and I were forced to boil enough water to clean produce, cook dinner, wash dishes, and brush our teeth. It made me feel pretty darn spoiled to live in a place where that’s considered a once-in-a-blue moon inconvenience and not the norm.
But because I have a blog and because I am lucky enough to receive products to review from time to time, I was not at a loss for potable, delicious drinking water. That’s because the folks over at Hint Water sent me this:
I had Fizzy Blackberry, Crisp Apple, Peach, Mango Grapefruit and more to choose from over the 24-hour emergency. And my oh my, did these waters hit the spot. Their website sums up their philosophy, describing how the founders wanted to have a refreshing and tasty drink, but without sugar and with “no preservatives, additives or anything else that you can’t pronounce.” They make the water with fruit essence and oils, and with no artificial sweeteners. I like that philosophy, and I’m trying to apply it to more areas of my life – from food to fabrics to my dog toys (not my insulin though, I like that nice and synthetic, thank you!).
Hint Water is exactly what it sounds like – water with just a hint of natural flavor to it. Everyone I gave a sample to said “this tastes like that fancy water at the spa with the cut-up fresh fruit in it.” And they were correct. It’s all natural, tasty, refreshing, and doesn’t have any chemicals or sugar in it. The athlete in me loved having something more interesting in my water bottle at the gym. The Portlander-by-way-of-San-Diego in me loves that it’s all-natural. But the person with diabetes in me loves this part the most of all, because their tag line is so true, and so important:
Get your own Hint Water here.
For most of us, our friends and family know that we have diabetes. If you’re lucky, the people closest to you will support you in yoru quest to live well with this disease. They will listen when you lament a recent bad number, they will not balk when you nix the chips and guac appetizer for chicken skewers instead, and they ask questions about diabetes and how it’s managed so they can understand it better.
But only a really good friend – the kind of person who is really listening to you when you talk about diabetes – will remember that you like to keep a jar of frosting in the fridge for your lows because it’s cheap, quick, and tasty. And that amazing friend, when making cupcakes for her boyfriend’s family one weekend, will also box up all the extra frosting for you in a tupperware and hand-deliver it to you at the gym when you meet for your Saturday workout. She will casually pull it out of her purse as if it was a normal thing to give someone at the gym and just say, “I know you like frosting for your lows and I had all this extra.” Just like that.
Now that right there folks, is a good friend. And a seriously on-point dia-buddy! Thank you to my friend…this will come in handy
It’s one of the worst feelings in the world to find yourself somewhere going low and going fast, with nary a carb in sight. We’ve all been there – it’s the walk around the block with the dog where you figured “I’ll just be out for a few minutes.” Or it’s the work trip where you packed extra lancets (like you’ll ever need those…who changes lancets?!) but didn’t think to throw an extra GU pack in your luggage for unexpected hypos. In the latter scenario you find yourself standing in front of a vending machine at 11:45pm hoping it accepts five dollar bills for the last Snickers bar inside so you can have it in your hotel room, just in case.
It is for this reason I keep my super top-secret, ultra-last-resort, I-hope-to-god-I-don’t-ever-actually-have-to-use-these treats tucked in my work bag. It is for those “oh crap” moments when you are headed for a low and forgot to replenish your main stash at the worst possible time. My personal last resort is comprised of two rolls of four-year-old Smarties, and two absolultey ancient sugar packets that may have coagulated into solid bricks at this point.
I don’t care what those taste like though, because in a pinch, those antiques could still save my life, so there they shall stay, slowly mumifying in my work bag until the day I actually have to use them.
Do you have a top-secret low stash, only to be used for emergencies and when all else fails? Leave a comment and let us know if so! (If only to make me feel better about my gross old candy!)