It’s 4am, and I can’t sleep. No, it’s not the expanding belly I’m sporting or the crazy workday I have tomorrow that’s keeping me awake. It’s the fact that my blood sugar is still over 200mg/dL despite the fact that I’ve been bolusing every two hours since I went to bed at 10pm the night before. A complicated meal of Thai food was the source of the elevated numbers. Any night with highs is bound to create a poor nights sleep, but this one was worse. It’s worse because all I can think when my blood sugar is high these days is: I’m hurting my baby.
If that sentence reads like a gut a punch, then you’ve got an idea of what the actual feeling is when it’s happening. Pregnancy with diabetes isn’t just complicated because of all the added doctor’s appointments and instructions. It’s complicated because of the added emotions on top of what can only be described as the emotional Mt. Everest that is wrapping you brain around baby/parenting/OMG my future.
My A1c is stupid good right now – normal person numbers. I am exercising regularly. I have cut my coffee, added my vitamins, and never once been late to one of the 14,000 doctor’s appointments I’ve already had. But when my BGs climb, it literally feels like alarm bells going off in my head with a drill sergeant in the background yelling “WHAT THE HELL DID YOU DO – FIX IT! NOW!”
Yes, yes, I am only human. Yes, I am trying to manually control a totally unpredictable beast. But when it’s not just you on the receiving end of your decisions, the guilt burden turns colossal. At 4am, all I could think was what the hell was I doing eating Thai food? I know curry sauces have tons of sugar and fat in them! That was the worst idea! Chicken and salad for dinner for the rest of this pregnancy. Don’t mess up again! You KNOW better.” The issue is that anytime I don’t end up with the numbers I hoped for, the hindsight reads like a Choose Your Own Adventure book that I totally effed up. I could have ordered the veggie dish, not the curry. I could have eaten less. I could have bolused further in advance or used a better temp basal or extended the bolus. But I didn’t, and now I feel like I’ve done my child wrong.
I don’t have a fix for managing this guilt. I am buoyed by the fact that my overall A1c is great, and that my baby is developing normal and healthy. I have a husband who tells me all the time that he is proud of me, that I am doing a great job and that everything is ok. But there is the noise in my own head that I could always be doing more – making better choices or trying harder. I can’t sugar-coat (every pun intended) this issue and I cannot tie up this blog post with a pretty platitude about being grateful for the experience or learning to do better with this issue. It’s just hard and I can’t talk myself down from those feelings. I seek solace in the opportunity the next time to do better but it’s tough to focus on that at 4am lying awake with the click…click of my pump in the background delivering another bolus.
Motherhood will be full of all sorts of feelings I’ve never dealt with before, I know this is just one of them. Some of those feelings will be the best a person can experience. Some of them will just suck. This is one of them.
I’ve long struggled with my dinner-time bolusing due to the fact that 1.) Jacob and I tend to eat dinner pretty late (8pm is the regular), and 2.) we eat pretty low carb (good in the short term, but can be challenging as higher-fat, higher-protein foods digest hours later). When my endo and I discussed this for the 10th time at my last visit, she said perhaps I should pay a visit to the nutritionist on staff, just to get some fresh ideas and perspective. I gave that a big ‘ole “why not” and booked the appointment.
I had not been to see a nutritionist since I was 18 years old, when a woman who appeared to be in her mid to late 90s peered down her nose at me through her bifocals and told me I was not, under any circumstances, to ever drink any alcohol except for “one light beer with dinner.” Which of course led to me drinking only light beer throughout college in amounts far greater than “one with dinner.” This led to wide swings in my BGs as I let them go up with the carb-heavy beer so I didn’t drop too greatly when they caused a low hours later. If only someone had leveled me at that age about alcohol, carbs, how it affects your body and how to drink safely and smartly with T1, I would have saved myself from four years of weekends that consisted of 250s and 60s. So I had not really had a great experience with a nutritionist before, but in this new chapter of child-bearing I find myself in, I am open to new ideas. So I went.
The nutritionist was friendly and open. We reviewed the food log I had prepared and discussed challenges with my BG. Then I got overly defensive when I saw her reach for a book titled “Gestational Diabetes” and I started down the “I am NOT a gestational diabetic I have had Type 1 for twenty-” before she stopped me and said “Oh I know! I’m just pulling some fun menu ideas from this book, that’s all.” Chill. Out. Lex.
Most of our discussion was helpful, and it gave me a few new recipe/menu ideas. But there was one area I had trouble wrapping my brain around. She really wanted me to increase the number of carbs I was eating. In particular, at breakfast. When I asked her why, she first said it was important to ensure that both the baby and I get adequate nutritional value, which personally, I call total BS on. I eat a ton of veggies and proteins, as well as dairy and some fruit. I am sure we are getting the right nutrition, and isn’t my healthy baby and 5.5.% A1c evidence enough that what I am doing is working? (I kept that to myself, by the way).
But then she offered another reason for me needing more CHO at breakfast, and this is where I’m looking for ya’ll’s opinion. She said that not eating any or enough carbs at breakfast can cause my live to over-release glycogen stores throughout the day, leading to higher blood sugars. That, my friends, was news to me and if true, a compelling reason to add more carbs in the AM. But I’ve also never heard of this, and never had it recommended to me before.
Have any of you heard any truth to this? Here’s my skepticism: glucose release from the liver is one way we get energy – the other way being through the food we eat. In normal folks, once the body starts producing insulin, another hormone, amylin, is sent to the liver to say “Hey SHUT IT DOWN, WE HAVE ENOUGH SUGAR.” In T1 folks, we don’t make the hormone amylin, since it also came from our dead beta cells. So if I eat more carb in the morning, and take my usual artificial insulin bolus, that STILL won’t send any signals to the liver telling it to stop sending glucose, correct? My understanding is that signal is only sent when one produces their own insulin.
Thoughts? Feelings? Permission to have half an English muffin with my eggs tomorrow morning?
My A1c right now is 5.5%. Please take a moment to log that, remember it, frame it in your mind and put it up in the Trophy Case because IT WILL NEVER BE THIS LOW AGAIN (unless we eventually have another kid which also, please don’t ask me if we are going to because I seriously don’t know if I’m even ready for one).
When I met with my high-risk OB for a pre-conception meeting, I waltzed in there with a 6.2% smug as can be and boasted to her about my rock-solid A1c. She smiled, paused, and said “that’s great…I really need you below 6% for pregnancy.” This is not every doctor’s opinion, keep in mind. I happen to have an OB who is coming from the perspective that if I have a normal A1c, then I’ve zeroed out my risk in some ways – your doctor’s advice may vary. At any rate, I dialed it in even tighter and got sub 6%, found out we were expecting, and have maintained these crazy low numbers ever since. It has been, in short a $h!t-ton of work. Micro-bolusing, CGMing like a fiend, and cutting out any foods that could send me reeling have been my tactics.
Between the changes in my diet, axing all alcohol, and slashing my coffee consumption, it’s hard not to feel totally deprived some days. I feel like I’m in a constant state of restriction, monitoring, and denying. Parties have a different vibe, as does the innocent question of “where would you like to go to dinner?” Yes, of course it’s worth it, and yes of course I am happy to do it, and yes, I feel incredibly blessed to even be pregnant and that our child so far has been so healthy. But it is not easy and I’m the first to admit that. I am lucky to have an incredibly supportive husband who has made many of these changes right along side me, and the support of friends and family who don’t judge or ask questions but instead accommodate (“can I pour my Stevia-lemonade into a wine glass at your housewarming party so it looks prettier?” Yes, yes you can friend).
That doesn’t mean I’m not pining for some of my favorites. If you were to open my iPhone and check the “lists” section, you would find a list called “Food.” And yes, seriously, this is a list of foods that I will be dining on once I’m able to relax my standards a little bit (that would be September 8th, if this Munchkin arrives on time). Scroll down that list and you’ll find every T1s favorite problem foods: pizza, mac and cheese, sushi, ice cream, and even birthday cake made the list (honestly a box of that gross, fake, Betty Crocker yellow cake mix with chocolate frosting sounds SO FREAKING GOOD I CAN’T EVEN TALK ABOUT IT. Seriously don’t talk about it). The list helps remind me that this is temporary, and in just four and half short months, I’ll wonder what the big deal even was.
All of these will have to wait until this little one finishes baking though. And truly I am blessed and lucky to have such an important job as to be the nest for a miracle. That doesn’t mean I don’t crave bagels though. Big, doughy, delicious bagels. OMG I have to stop. I wish a bagel store would make me a “one bite to go” bagel situation….
Doctors these days are plagued with the burden of documenting more than ever. Each chart note must explain in graphic detail what was discussed, how much time was spent face-to-face, and exactly what mitigating strategies will be implemented for any high-risk behaviors or conditions. After 22 years with diabetes, I’ve racked up quite the file. Recently, my doctor’s office has started employing medical scribes to help with the documentation burden.
A medical scribe involves a third person rolling a little stand-up desk into the exam room with you and the doctor and typing literally everything that is said during your appointment, and then summarizing for your chart notes. It’s kind of like a court reporter in scrubs. With the implementation of this service, I’ve noticed some interesting changes in my chart notes. Mainly that there are details in there that I don’t recall being central tenets to our discussion, but somehow make it onto the final chart note. And oh, how I hope I am never judged as a person on my chart notes alone. Because if I was, then I would pretty much be a tired, overweight crankpot who doesn’t work out and eats beans before bed….presumabley to make my husband’s life as uncomfortable as possible?
Ladies and gentelmen, I present to you: Chart Note Highlights From My Latest Endo Appointment. Enjoy. I sure did.
- Alexis states that she is fatigued this week and has been making “horrible food choices”. (For the record, I never used the word “horrible.” I said “poorer,” which to be fair, from a distance, sounds like “horrible.” But come on!)
- Alexis has been eating a low CHO diet and is interested in eating more CHO if it will help with low BG. (Um, I’m always interested in eating more carbs…but they break my blood sugar. You might be misunderstanding the use of the word “interstested” here).
- EXERCISE: elliptical. 3/9/15 visit: notes reduced activity level (I have exercised since that ONE elliptical session I did way back on March 9th. In fact I’ve exercised most days since then. But that’s fine. Let’s just make sure we document that ONE time I did the elliptical. It’s apparently note-worthy but today’s 2 mile run was not. Got it.).
- Eats beans before bed (I actually have no rational explanation of where this note came from. I am not that mean to my husband).
- Constitutional: She appears well-developed and well-nourished. No distress. (Just because I’m well nourished doens’t mean I’m NOT DISTRESSED. Have we talked about the fact that I can’t have any wine and only one cup of coffee a day? I’M TOTALLY DISTRESSED PEOPLE!)
- Body mass index is 28.68 kg/(m^2). Follow-up BMI Management Plan: 4/17/15: pt is pregnant. (Thank you for putting the “pregant” note in there. Because the last thing I wanted to hear was “needs to go one diet.” I’ll be doing that in about 5 more months, thank you!)
Let us all hope we are never defined by our chart notes alone!
Lemme go ahead and tell you about one of the greatest injustices of our modern world: You are a normal person until one day, you take a pregnancy test that comes back positive. It is everything you ever hoped for and simply amazing.
And then you realize that for the next nine months, you will be giving up your two best friends in this entire world: wine and coffee.
Ok, ok sorry, I’m being pretty dramatic about this but it IS a bummer. Here you are, ready to celebrate your new little bundle and simultaneously TOTALLY STRESSED OUT because you will soon have a person that means more to you than anything in the world in your house. And to get that person there in a healthy and happy fashion, YOU Mama-to-be with Type 1 diabetes need to keep those numbers more ship-shape than you ever have before. And guess what? That is stressful. And on stressful days, I like two things: a ton of coffee and a nice, thick glass of red wine with my dinner.
You can have a little coffee while you’re pregnant – up to 200mg per day or about one cup. Which if you’re me, is approximately one one hundredth of my normal intake…ok not that much but it’s a downgrade, for sure. And wine, as with all booze, is totally off limits of course. Double downgrade. Trouble is, there’s not much I can replace these two things with either, given the T1D. Some women have sparkling flavored waters, or ginger ale, or juices and smoothies. All of these things usually have a lot of added sugar that I’m not willing to bolus for and try to manage. And the ones that don’t contain too many chemicals to count – things I don’t love even when I’m not pregnant but are more top of mind than ever. Basically my choices are water, soda water, and milk. I’m bored.
Then a nice person from a company called Leaf & Love emailed me and asked if I’d like to try their lemonade. The lemonade was created by two moms, one of whom has a child with T1D. It’s made with all natural ingredients, and sweetened with Stevia (which is considered safe for pregnant people, BTW). And truly, a look at the ingredients proves its authenticity: filtered water, organic lemon, Stevia, and a touch of Himalayn pink salt. They created this concoction in their own kitchens until it became so popular in the neighborhood that they started their company. They shipped me a box of lemonades…which are now gone.
They are gone because this lemonade is absolutely delicious, and only has two grams of carbs per box. Two grams! I don’t have to bolus for it and it tastes great. It is a life-saving alternative to the boredom of water, and is just the cold drink a pregnant chick needs as the days start to heat up more and more around here. Seriously, I love this stuff. And although not many retailers carry it right now, you can get I on Amazon.com in a 32 –pack case (I just ordered two). To top it all off, they also donate portion of their proceeds to the Insulin for Life campaign – how cool is that?
A wonderful find at just the right time – many thanks to Leaf & Love for the samples. Learn more at their website and order your own here at Amazon. And, because the folks over at Leaf & Love are so generous, they want to give you a special code to save you $3 on your order! Enter code SAVELOVE at checkout!
We’ve all had lows at inopportune times. You’re in the middle of a great workout and you have to choke down glucose tablets while on the treadmill. Or you’re driving somewhere and you’re late only to have to pull over and wait the full 15 minutes for your BG to come back up. And we’ve all had those low moments where you’re so low, you can’t think straight, and you just want SOMETHING WITH SUGAR IN IT DAMNIT. Doesn’t matter if it’s a three-year old packet of honey or half a white-bread hot dog bun, you just need glucose.
Friday evening found me with both annoyances, as I shopped at a local Target for a few essentials. I had found my necessary items and was heading towards the checkout when I felt a little too light in the head, a little too much sway as I walked. I grabbed my CGM – 71mg/dL with a downward slanting arrow. Yes, I had glucose tablets in my pocket but I was at Target for crying out loud – THERE’S CANDY THERE. Especially by the checkout counters.
Trouble was, in the 20 seconds it took me to get up to the check stands to select my Diabetes Prize, I must have dropped a little more. I just felt foggy and crummy and I was starting to get sweaty and really, I just wanted to fix the low. In my haze I grabbed the first thing that said “Chocolate” on it, opened the package and finished the contents by the time I got to the front of the line. I handed the empty box to the cashier and simply said “sorry, I got hungry.” She could not have cared less by the way – I am sure she’s seen countless kiddos tear through far more than that in one Target outing.
It wasn’t until after I paid and started to feel a little better that I looked more closely at the package I had just devoured. Yes, there was chocolate inolved…and yes it did the trick and raised my BG…but um….what the eff is this snack? And why didn’t I know about these before this moment?!
Hello Panda, indeed. In case you were wondering, Pandas are GREAT at fixing lows.
Ah, the annual dilated eye exam. A time for me to totally freak out, retreat into a dark cloud of terror surrounding my biggest diabetes fear (losing my sight), and become generally overwhelmed by anxiety approaching the appointment wondering if the THIS is the year the doctor says “yep, you’re screwed.”
The eye exam is the appointment every year that I fear and dread more than anything else. I think it’s because I finally DO have a little retinopathy in both eyes, and it’s made it very real to me that just because I have good control over my diabetes, it doesn’t mean that I get off scott-free sans complications. There’s no early release for good behavior in Diabetes Land, and this disease doesn’t reward you for doing everything “right.” The simple fact that I’ve had this disease for 22 years puts me at risk for retinopathy, regardless of my tight control. It’s discouraging to say the least, and there’s a big “what’s the point” feeling to all of that. But of course, the point is that I’m overall a healthy person, with minimal complications, and also growing a healthy human being right here in my own baby factory, which is an accomplishment in its own right.
So what’s a gal to do while waiting for her pupils to dilate? Take some selfies of course. And then laugh later at the fact that I looked cracked out on drugs/like an Emoji/like an Anime character/bat-$h!t crazy. It’s a good thing I work in the diabetes industry because when I went to see customers later that day, they simply asked “do you want me to pull the shades?” and not “did you smoke something strong before you walked in here?” I am always amazed by the saucer-sized pupils those stinging drops create.
The selfie-taking helped distract from the nervousness I get about this appointment. The doc came in and peeped the back of my peepers. Her conclusion was that nothing had progressed in terms of the mild peripheral neuropathy that I have developed, which is exactly what you hope for once this crap has started. The goal is simply to halt the progress now, which is best done by the obvious: more good control. And I’ve got that covered, especially for the next five months while this little munchkin continues baking.
So now, enjoy this creepy selfie. You’re welcome.
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?