Life is full of “one days.” One day I’ll get married you think to yourself. One day we’ll own a home. One day I’ll finally be able to run a full marathon. If you have diabetes, there are other “one days” that go along with that. One day there will be an artificial pancreas. One day I might have a really serious complication. One day someone might have to call the paramedics for me. One day they might actually find a cure. One day maybe there won’t be anymore diabetes.
All of these “one days” are simply the musings of our greatest dreams and aspirations, and the specters of our greatest fears. They’re the stuff we want that maybe we don’t know how to get yet, or they are the subjects we are simply not ready to deal with. They are our way of throwing something to the theoretical wall to see if it sticks. One day I hoped to marry someone kind, understanding, smart and funny. And one day he was there, finally. One day I went to the eye doctor and retinopathy, however mild, was there too, finally. These days have a way of arriving whether we are prepared or not.
Of all the “one days” that have rattled around my brain, the thought of having children was the one that excited – and terrified – me the most. One day I will have a person that I created, that I will carry, that I will welcome into the world, that I will name, and I will raise. I have always believed that I can do anything I want with diabetes. That I would never allow it hold me back.
And indeed, I’ve found love, a career, traveled the world, ran half marathons, done competitive karate, blogged for five years, moved to a new city, found myself putting Humalog in a cup of ice on a beach in Honduras so remote there was no fridge to keep it cold and yes, I have done all this with diabetes. I was bolstered in these adventures by knowing I was not the only one do have done it. I leaned on my community, my tribe, for advice and confidence. But having a baby? That sounded like the biggest adventure of all.
I always knew I wanted a child. I always pictured another face at the dinner table. But the challenges associated with having a baby with Type 1 diabetes were daunting to me. I heard from countless women with diabetes that yes, it was hard, but so doable, and so so worth it. I wanted to know everything – what was your A1c during your pregnancy? What did you eat, exactly? How did you manage work and your diabetes and being pregnant? How did you manage so long with such limitations on coffee (see where my priorities are?) I tried my very best to be prepared for one day. I met with my endo, and a high risk OB. I read books specifically for managing T1 and pregnancy, and I scoured the blogs. I carb counted and I titrated and I exercised and I got that A1c down to 5.8% and I did all the things I needed to do to “prepare.”
But oh, how I did not know that you cannot prepare for that moment. There is nothing in this world that can prepare you for the moment when you see your little creation on the ultrasound screen, the tiny heart beating healthy and happy. There is nothing that will make you more proud, excited, terrified, grateful, or full of wonder in that moment.
I am so excited that “one day” will finally be here September 8th, and that he or she is completely and utterly perfect. We are so excited, and feeling so very lucky for this next big adventure.
This my friends is the Glucoaster.
If you’re not familiar with this horrendous ride, the Glucoaster refers to a day full of wide swings in your blood sugar. Highest of highs riding the upper rails of your CGM, followed (or precipitated) by earth-shattering lows. Rinse, repeat. Over and over again until your CGM graph looks like the blueprint for the Loop-d-Loop carnival rollercoaster. And we all know what happens to your brain and your gut when you ride the Loop-d-Loop: you probably lose a few brain cells, have an upset stomach, and have a strong desire to go to bed at 6:30pm. How does one get a ticket on this ride? Well step right up! Let me walk you through it.
Start your day off with virtue, going for a three mile run at 6:30am, despite the cold and slight rain. Bolus generously for breakfast even though it only contains about 15 grams of carb total. You have a tendency to rise quickly after a run, thanks to your liver. Go about normal day. Decide to treat yourself to the smallest size humanly possible sugar-free hot chocolate (8oz, guess 20 carbs total since sugar-free doesn’t mean carb free of course).
Welcome your first crash! Pull over vehicle as CGM starts beeping, wipe sweat from brow, wonder out loud to yourself how two Fu&%ing units could have sent you plummeting like this. Feel like you might pass out, CGM reads LOW in all red caps, shovel 22 Swedish fish in your mouth Which is 10 more that you need. Add 15 Gummi Bear 10 minutes later because you still feel awful. Finally start to feel better. Watch CGM start climbing.
And climbing and climbing and climbing and 284 mg/dL ARE YOU FREAKING KIDDING ME?! Bolus on the way up at 152mg/dL, again at 202mg/dL, and at 284 mg/dL all within 20 minutes of each other. (See also “Rage Bolus). Wonder what when the hell this insulin crap will start working.
See double arrows up turn into single. See single arrow up turn into arrow flat line. See arrow flip downward. Feel relief for approximately 14 seconds. See double arrows down. 182, 154, 129, 102, 88. Sh!t. Crashing again. Pull over AGAIN. Reach for a juice box, because now Swedish fish sound awful. Drain juice box. Still crashing. See Starbucks. Purchase muffin. Gobble half of muffin out of spite. Finally start to feel better. LOW still showing on the screen of your CGM. Force yourself to wait. Remind yourself you just at 50 grams of carbs. You won’t die. Just wait. Sweat stops pouring, starting to feel better. Wait another 15 minutes as the arrows once again show double up. Start driving.
Don’t bolus. Try your hardest to get off the damn Glucoaster (creepy carnival worker cackles maniacally in the background). Try to do better the next time.
The numbers on the dash read:
I know that these are the radio station, the average MPG, the range left in my tank, and the time, in that order. But before my brain registers any of these things having to do with a car, all I can think is “good blood sugar, scary low blood sugar, really crappy blood sugar, and REALLY crappy blood sugar….”
With diabetes we are told to live by that number. It dictates what we do next, how we feel about ourselves, how we act towards others – even what we think about the future . It can be near impossible to simply “take information” from the number and not read into it. Follow the rules, carb count, take your insulin, and things will be fine, we’re told. But it’s so not that simple. The number of times I’ve done everything “right” and still been karate-chopped by diabetes is too high to count after 22 years.
I will say, you do get pretty darn good with numbers with this disease. Carb counts, A1cs, milligrams per deciliter galore – it’s all a numbers game. It’s no wonder that everything in your life starts to remind you of a blood glucose meter.
A customer told me today that one of his patients has an out of control A1c – double digits – and he didn’t feel like he could help him. He noted that he felt like basically, the patient had decent control for a long time but got tired one day. And instead of taking a day off and then getting back on track, the patient had taken a year off, and had yet to find the track again. I’ll just say, for the record: I freaking GET IT dude. This disease wears you out. And sometimes you feel like “for what?” The “for what” varies from person to person, and day by day. I’ve had my motivation to control blood sugars come down to the very fact that I just want to have a good night’s sleep for once. Just
The long term “for what” is harder of course. And really, the whole goal of managing diabetes for me, is to live as normal a life as possible. And by normal, I mean being as free to dream, to do, to explore, to create, to change my mind, to travel, to exist just as the next person.
And hopefully to one day really just see the numbers on the dash for exactly what they are.
When you see numbers, does your mind go to BGs first, before any where else? And do you get a little twinge when it’s a “bad” number, like I do?
We all have differing levels of confidence when it comes to certain activities and managing our diabetes. For example, I feel very confident in my ability to manage my diabetes on long runs, having trained for several half marathons at this point. Sure, I don’t always get it right and there will always be some surprises (I mean, it’s diabetes, right?) but for the most part I know what to expect and what to do. A sport that’s always challenged me and my d-confidence has been surfing. I can’t take my CGM with me (well, not easily), and being in the water makes it hard for me to recognize a low BG. More than once I’ve been out in the ocean and gulped down a GU because I was sure I was feeling shaky, only to return to a BG of 250mg/dL and a realization it was the pummeling of the waves, not the glucose that had me fatigued and shaky.
A sport that falls somewhere in the middle for me is skiing. I love to ski, but I just don’t go very often – maybe once a year? Sunday found us on said annual trip, and Jacob and I hauled up to the mountain for a day on the slopes. I went in with a great BG, about 98. I had 15 grams of CHO by way of an apple before getting on the mountain, but didn’t turn down my basals. I did a run on the bunny slope to get my bearings, and then we headed up a regular lift to some blue tracks.
We did about four runs, and I was feeling good (although a little clumsy and slow – to be expected when you get out once a year!). BG held steady in the 80s for the better part of two hours, but at the top of the mountain on our last run, I felt three vibrations from my CGM, tucked in the top of my shirt. If you use the brand of CGM that I do, you know that three vibrations or beeps means you’ve hit your low threshold (versus two for highs), so I knew I had dropped under 70mg/dL. It was good timing, as we were ready for a hot chocolate break right then anyways (yeah…we don’t take ourselves too seriously out there! Four runs = hot chocolate break in our world!)
Turns out the hot chocolate was waaaay to much for that little low, and I was arrow up and 154mg/dL in no time. I bolused two units, and steadily watched the arrow flip around on my CGM. By the time we broke for lunch around 1pm, I was in the low 80s but still drifting down, so a few french fries from Jacob’s plate to complement my chicken salad did the trick. We hit a few more runs after lunch and called it a day after that.
Surprisingly, that’s when the biggest challenge started. I dropped down into the 40s before dinner, had three lows overnight, and dropped low twice the following day! It’s amazing that not only intense exercise but the type of exercise can change how sensitive you are to insulin for an entire 24 hours afterwards! I’ve been playing catch up all day, despite being relatively sedentary at work on Monday.
What activities do you feel like you have down? And which ones are hard for your to manage, or challenge your d-confidence?
With pump infusion usually lasting three days, and my CGM sensor lasting seven days, it’s rare that the moon and the stars align and I have a day where I’m switching both of them out at the same time. But when it does happen it’s 1.) awesome and 2.) mildly horrifying. Let’s start with awesome.
There’s a term in the diabetes world that you may be familiar with if you’re a device user: the free shower. A free shower means you can take a shower completely device-free because you’re between site/sensor changes. And while this might not seem like a big deal, it is. If you’re like me, and your pump and CGM seem like part of your body, not wearing them even for a few minutes feels strange and liberating. It’s got a feeling to it like you’re playing hooky from school: you know you’re gonna have to go back, but right this second you don’t and it feels so good. We develop an awareness about our devices and where they are on our body so that we don’t waste expensive equipment. When a CGM sensor is on your leg, you pull pants on and off a little more slowly. When you put a pump site on your arm, you remember to stretch your shirt a little extra on that side as you pull it over your head. A device-free shower means you can forget out one of the thousand things we have to remember with diabetes for just a few minutes.
Now, on to mildly horrifying. Here’s a photo a why a double change day can be a little depressing:
We just generate so much expensive/high tech trash. The old pod from my pump contains a tiny little motor and batteries. The CGM sensor was hand-made in a lab, dipped in a platinum glucose-sensing solution, and packaged in a sterile environment, just for me. My insurance paid out the ying-yang for both. Then you add in packaging, adhesive solutions, adhesive backings, and everything else involved in getting these amazing products delivered to my doorstep, and it makes for one trashy scene.
But oh, how that trash is worth it for the moment after the shower when you can towel off without bumping off a site. It’s the little things!
Hangovers from alcohol are really awful, and the reason why at the ripe old age of 32 I can happily say I finally grew up a few years ago and haven’t had a severe one in ages (and believe me, it wouldn’t take much to invoke one these days…like two glasses of wine is a ca-razy night! My how times change!)
But there are two kinds of hangovers that don’t change with age when you have diabetes: the morning after a long night of lows or highs. Both suck, and both suck the life out of the next day. A night full of high BGs leaves you dry in the mouth the next morning, lethargic and unhelped by 17 cups of coffee. I tend to wake up super hungry on those days too, since I’ve got more insulin than a T-Rex pumping through my body (did dinosaurs get diabetes? Imagine the size of that pancreas!….digression. Ahem), but also feeling bloated and puffy. Ug.
Then there’s the low hangover, of which I experienced last week. The evidence the next morning was more damning than empty keg and a sea of red Solo cups in a frat house. Three drained juice boxes littered the bedside table, and I was still barely over 70mg/dL by 7am the next morning. I was tired from having been woken up 6-plus times throughout the night as my CGM alerted me to the low. I would treat it, but sometimes it wouldn’t come back up before the 15 minute “snooze” on my CGM alerted me again. The result was a gigantic headache, a fog thicker than molasses, and a day filled with coffee, lattes, and desperate espresso shots.
I think rough nights of blood sugars can be harder than a rough day of BGs. In the day time, you always feel like you have time to recover. Plus you can exercise for a high, reach for something tasty for a low, and talk to a partner if you’re frustrated. In the middle of the night, it’s a lonely feeling to deal with tough numbers in the dark by yourself. Although I always know I could wake Jacob up anytime for help or comfort, I don’t want my diabetes to disturb both our sleep. Instead, I try to quietly stab the straw through the juice box, or get up from the warm bed to the cold kitchen for some cold frosting from the cold fridge. On nights with highs, it’s the 12 trips to the toilet that annoy the most, each time feeling like a colossal effort and annoyance, coupled with a feeling of defeat. The next morning, the symptoms of the hangover vary depending on if you were low or high, but one result is always the same: a tired and grumpy start to the day.
The Diabetes Hangover: still best treated with a large coffee, eggs and bacon, and dark pair of shades!
Last week, a new email popped up in my inbox. The subject line was innocent enough. It read “Are you covering The Lancet study on Women and Diabetes?” No, I wasn’t, but I’d like to know more. I mean, I’m a woman with diabetes, so there’s that. Then I opened the email and read on. The email got right to the point, beginning with this:
“Are you covering The Lancet Diabetes & Endocrinology article on women with type 1 diabetes at significantly higher risk of dying compared with men?
According to the article in The Lancet, “Women with type 1 diabetes  face a 40% increased excess risk of death from all causes , and have more than twice the risk of dying from heart disease, compared to men with type 1 diabetes, a large meta-analysis involving more than 200 000 people with type 1 diabetes published in The Lancet Diabetes & Endocrinology has found.”
Um. Wow. No, Random Person emailing me about this incredibly depressing and downright nightmarish statistic, I’m not covering this article. I’m not covering this because there are enough scary and bad statistics out there about diabetes already. I’m not covering it because this blog isn’t about focusing on all the bad sh!t that could happen with diabetes, it’s actually about thriving with Type 1. I’m not covering that article because that information LITERALLY HELPS NO ONE FEEL BETTER ABOUT DIABETES.
No dude, I’m not covering that article. I’m actually deleting your email right now. There, now that feels better.
You know what really gets my goat? When I think I’ve really done a great job with my diabetes management. Those moments where you think you’ve navigated through a tough situation and come out winning. You’re all stoked and feeling like a diabetes ninja. And then I hear the beeeeep beeeep of my CGM, check the number and find out that diabetes just crept in through the back door and clocked me with no warning. Grrrr!!
Superbowl Sunday delivered the sneak attack punch, and in hindsight, I should have known. In typical American fashion, the Super Bowl party we attended included chips, dips, pizza, and sweets. I had thought I chosen well, sticking to mostly low-carb veggies and dips that would minimally impact the BGs, and I gave myself a pat on the back for only having one slice of pizza which I bolused early and well for.
But a few hours into the game, after bouncing no higher than 160mg/dL I crested over the 200mg/dL mark. It took a ton of extra insulin to get it down from there, no doubt due to some latent digestions of those high-fat dips and fibrous veggies, and maybe that pesky cheese on the pizza. Whatever the culprit, this high BG really ticked me off (or was it the tragic ending to the game that had me in such a bad mood? Could have been both). I hate it when I’m trying – like really, really trying – and diabetes pops up and says “Nah, you AIN’T got this” followed by an evil laugh and a flip of the bird.
That jerk diabetes. Always trying to get the better of me. Thank goodness there’s tomorrow – and it’s regular, healthier food options – ahead of me. Like the Seahawks, you’re not getting two in a row, diabetes!
Wednesday afternoon (and actually the entire evening as well) found me plane hopping on what can only be considered the longest route possible back to Portland from a sales meeting in Miami. Although I was stoked on the gorgeous meeting location, the trek across the country was no small feat. As I was getting ready to board my final plane in Seattle, I noticed that my pump was running on fumes – so low in fact that it didn’t even display a number of units left, just a flashing “LOW” symbol next to the insulin icon. And at the same time, my CGM let me know that I needed to connect to a power source…like NOW.
Mild to moderate panic set in for a moment. But, as it turns out, the CGM lasted the final two hours to get me back home and to a power outlet, and I had the 60 seconds required to do a quick pump site change in the ladies room at the airport before getting on the last plane.
But it is moments like this that I’m glad I’m a compulsive back-up planner. In my purse, I had both short and long-acting insulin pens, the needle caps to facilitate using both of those pens, and plenty of test strips and a lancing device at the ready. Being prepared helps bring me peace of mind, and although it’s annoying to carry extra supplies with me, nothing beats the safe feeling of knowing I’ve got a plan B.
Even though I didn’t need the backup plan, because I’m the fastest site changer this side of the Mississippi….(cue Western movie music…).
It was another crazy busy day at work. I had been to three different cities in the Pacific Northwest already, and it was barely 2pm. It was one of those days of running around, putting out fires, trying to get everything done on a seemingly endless list of to-dos. At one of my accounts, I was pulled in to a patient room to discuss our product with a young man 12 years my junior. He sat with his arms folded at the end of the exam table, eyes on the floor, while his doctor explained who I was. His doctor also noted his off-the-charts A1c, and how it was putting his future in danger.
I started to talk about CGM and how it had been helpful to me, and why it could be a useful tool for him as well. The young man would barely nod with each of my bullet points, and had yet to bring his gaze up to meet mine. This wasn’t working. Nothing I was saying was landing. Was he totally over this? Wondering why the blonde lady in the blazer was yammering on about some device? Annoyed at his doctor for telling him to get that A1c down AGAIN? Bored? Whatever it was, this kid was not. Engaging. With. Anyone. I changed my tack.
I asked him a question I often ask patients – it’s a question that gets them talking about their diabetes in a way that lets them also air their grievances. I asked him “what annoys you most about having diabetes?” It’s a question that can get us talking and relating about the shared challenges of diabetes, and lets them know I’ve been there too. It also helps me understand why their doctor wants me talking to them about CGM in the first place. I expected a post-adolescent smart-ass answer from the young man. Something along the lines of “EVERYTHING, DUH!” But he didn’t say anything. The room was quiet. Until I heard that he was softly crying. With his chin resting in his hands, eyes downcast, I watched a tear escape one eye and then his hand go quickly to his cheek to wipe it away. I kneeled down in front of him by the exam table so our heads were closer. He still couldn’t look at me.
“Diabetes is hard. It’s really, really hard, isn’t it?” I said quietly. “It’s a disease that we never asked for and don’t want to deal with. It’s a full time job with no breaks and I want you to know that I get that, and that I know that nothing about this is easy. And it’s ok to not be ok with that all the time.”
The doctor handed him a tissue. He nodded his head and wiped away his tears. I talked a little more – mostly just out loud and to the doctor to let him know how to go about learning more about our products. I thanked the patient and walked outside the exam room and I felt the tears welling up in my own eyes. I don’t think anyone could have answered my “what annoys you” question any more appropriately, because the truth is, it’s all of it.
It’s just the fact that we have to deal with this and others don’t. And yes, we should all count our blessings and look on the bright side and be grateful for our modern medical choices but there are moments where you just want to say “THIS DISEASE SUCKS AND HAS TRULY GOTTEN THE BETTER OF ME TODAY.” Especially if you’re having one of those days and some lady just barged in to your doctor’s appointment (oops). It was powerful, sad, and also strangely connecting for him to have cried like that. It made me hurt for him because he’s part of my non-working-pancreas tribe and he’s having a tough time. We all have tough times with diabetes. But that’s why we have to let it out sometimes – whether it be at the doctor’s office or with a loved one or on a blog or forum. It’s ok to answer the question “what annoys you about having diabetes?” with “All of it.” And to have a good cry about it.