“You’re gonna be so bored by this CGM download” I chirped to my endo. “Things are so dialed in right now you can barely tell I have diabetes!”
This was the tone as I was wrapping up my most recent endo appointment. Finally, in month nine of my pregnancy, I’m feeling pretty solid on my basal rates, carb ratios, and correction factors. I rarely go outside the lines of my CGM these days, and have been waking up to fastings below 100mg/dL. My endo and I reviewed my CGM download, and she sent me off smiling to the laboratory for an A1c, which I was sure would come back in the fives.
In fact, I had predicted an A1c of 5.7%. How can I be that exact on my guess? Well, I’ve gotten pretty good at using my CGM download as an A1c predictor. If I do a 90 day download of my CGM and look at the average BG, I can use an online A1c calculator to see where I stand. I’ve been doing this for the past two years or so, and it’s never steered me wrong (give or take a .1 or .2% deviation). Literally, for two years running, I’ve predicted my A1c – usually on the nose. I like doing this because it prevents me from being blindsided by an unexpected number. My most recent 90 day download showed an average BG of 119mg/dL which should have yielded an A1c of 5.7%.
Given that this strategy has yet to produce an incorrect prediction, one can imagine my surprise the next morning when I opened an email containing my lab results and saw…6.3%. What. The. Heck?! That wasn’t just a little off..that’s over half a percentage point. Normally, I’d be stoked about that kind of number, but as I’ve blogged before my goal during this pregnancy has been to keep my A1c under 6%, per the instructions of my doctors and my own goal of lowering my risk as much as possible.
I was pissed. And confused. And convinced that those labs simply had to be wrong. The lab report itself contained its own estimated average blood sugar, which for an A1c of 6.3% is 134mg/dL. Right there, things were not adding up. My CGM is taking 288 readings every single day – nothing can provide a more accurate average than that thing. And if my download showed 119%, where on earth was this coming from? I emailed my doctor and let her know that although I’m not one to argue with the numbers, I just felt like this one made no sense, and I gave her my reasoning. She wrote back shortly suggesting we get it drawn again, and add in testing my fructosamine. I’d never heard of or taken that test, but she noted it can be a good way to verify A1c.
I went back to the lab the next day (good thing I’m at the doctor 100 times a week anyways) and got it pulled again. The next morning: 6.2%. Still making no sense! The fructosamine was a little more revealing, although I had to do some serious Googling, consulting with my personal physician assistant (that would be Jacob), and a bit of math, but essentially, the fructosamine looks back a few weeks – not months – like A1c does. That test also showed that I should have an A1c in the fives, at least for the last month or so. That gave me some peace of mind and proved that at least for the last month, I haven’t been imagining how good things have been.
At the end of the day, I’m not sure what happened. There were about 2 weeks in June where I had some major challenges controlling my BGs – lots of travel and some vacation time with food/exercise challenges. But overall, the numbers simply aren’t correlating. And more than just being upset that my A1 is up, what bothers me the most is knowing just how damn hard I’ve been working, and still seeing a number go up. Truly I have never been more dedicated to my diabetes management than right now. It’s a slap in the face to see that number and I’m still baffled by the result.
Have any of you ever had an A1c (or another lab test) that simply didn’t add up? Did you argue the point, or let it ride? And I’m curious if anyone has ever had their fructosamine measured concomitantly to verify the A1c. This was a new test for me. Let me know what your experiences have been!
I haven’t been blogging much lately and it’s not just because I’m so busy setting up cribs/washing tiny clothes/sterilizing bottles these days. With a mere five weeks or less to go until baby (eek!), I’ve got a lot on my mind too. I’m fully focused on my health and blood sugars right now, trying to make sure that our baby’s growth has every chance of staying on the right track, and that my BGs don’t creep up during this last phase of pregnancy as I tire out both physically and mentally from all the focus. I also switched jobs within my company – from being on the road in sales all the time to being at a desk just five miles from home. I can’t even begin to say how healthy this change has been for me (and baby too). I’m no longer spending nights out in faraway cities for work and I’m spending minimal time behind the wheel communiting the short distance to my new gig. But even though the job is with my same company, just in a different division, it’s still new, and that has demanded a hefty chunk of my few remaining brain cells these days. Needless to say, my priority list is a short one right now. And I’m ok with that.
I’ve hit a groove with my diabetes management this last week or so. My basal rates are dialed in perfectly for what I need right now, and my carb ratio and correction factors seem to also be doing the trick. My exercise has changed from my beloved boot camp and boxing classes to long walks in the morning before work (on the days of the week I can drag myself out of bed that early) or on the weekend with the dog. A1c is still in the fives, which will always feel nothing short of miraculous to me. Suffice it to say there isn’t much exciting commentary from me these days in the realm of diabetes management or otherwise – and I’m ok with that.
I’ve always blogged because I had things I wanted to share and discuss with other folks with diabetes. When I started this blog, it was to become part of the robust conversation that exists in the diabetes online community, and I’ve been so lucky to be part of that conversation since 2009! But as I find myself moving to a different phase in my life, making room for a whole other person to join my world, I find myself having less room for other things. I expected that and I am embracing that right now.
I’m not ready to leave the blogging world just yet, but it is evolving right now into something that I do less frequently. And I have a feeling that right when this new littler person gets here, I’ll be taking a long hiatus from the DOC while I get used to what that new normal looks like. For right now though, things are holding steady as I get ready for the biggest change of my life. And although that’s doesn’t make for particularly good blog entries, it actually feels pretty darn satisying to me. If there’s one thing I’ve learned from the DOC in all these years it is that living well with diabetes is all about checking in, testing, adjusting as needed, and continuing to adapt. Lessons that will serve me well as a parent too, I am sure.
Fourth of July weekend meant BBQs, hanging with friends, and watching some super-illegal commercial-grade fireworks being exploded at the local park. All around good times celebrating America’s birthday. It also meant being over 7 months pregnant and out in public in the heat. With all the food present at the festivities, there was plenty of discussion about diabetes and food choices as well. Here are my top snippets of the long weekend: the Good, the Bad, and the…REALLY?
“Are you allowed to have more that one child with diabetes? Like can you have as many as you want?”
“Can I touch your belly?” Yes. Touches belly. “Ew. Why is it hard?”
“Wow your belly has really popped out now! MUCH more than last time I saw you!”
“You must be dying in this heat. I mean it must just be awful, in your condition.”
“Wow congrats! Are you ready for your life to be over?”
“Do your shorts come up over your belly? Oh they do. So that’s how maternity shorts work.”
“There’s plenty of dessert! And Lexie there’s a ton of fruit for you – no sugar!”
“I’m sorry mam you can’t park there just to load up your vehic….oh no problem. You can totally park there.”
“Mam let me get someone to help you with these (one small bag) of groceries.”
“So have you ever seen Steel Magnolias?”
“My son has diabetes. Can he have kids one day too?”
“Wait no seriously what exactly, literally, did you eat to get your A1c that low? Wait lemme grab a pen.”
“You SHOULD have a c-section if they’ll let you – makes for a much prettier baby! No smushed faces.”
“You should have planned to be pregnant in the winter!”
“Can I get you a beer? Glass of wine? We have great gin and tonics too!”
My personal favorite though? “This will be the best thing you’ve ever done.” I’m going to let that comment stick with me, and try to just let the rest go :).
There was time when anything over 30 total daily units on my pump meant I’d had a serious carb-heavy day. Like I must have had a bowl of ice cream, or a pasta dinner to warrant something in the upper 30s or GASP: 40 units! In one day! (Keep in mind everyone’s total daily units vary and this is not a commentary on the “right” amount of insulin, simply what I am used to).
Those days, honey, are long gone. The past few weeks, I’m a regular in the high 50s. Sometimes I have a 60 unit plus day and I don’t bat an eye. I will crank that pump up until steam comes off. But as I hit the home stretch here of the last 10 (-ish? We might deliver early!) weeks it’s amazing to see how things done changed with my management. If I thought I had vigilance before, I’ve taken hawk-like monitoring to a whole new level. Our baby is measuring a bit big, despite me having a normal person’s A1c. And although this can simply be chalked up to the fact that both my husband and I were on the larger side as babies, I’m still trying to keep my blood sugars from having anything to do with it. Which means running through 60 units of insulin a day, occluding a few more pump sites than normal, and aggressively checking CalorieKing.com to make SURE I’ve got that carb ratio right. In the spirit of “I can do this damnit,” I thought I’d share a few practical tips, besides investing in Humalog stock, that are working for me during the last trimester of this pregnancy:
1.) Eating dinner no later than 7:30. This was a BIG change for Jacob and I. He and I work late and tend to eat late. Cooking together is our bonding time so we wait until emails are done and everything is buttoned up before we head to the kitchen to cook, catch up on the day, and dine. It was normal for us to eat dinner at 8:30 or 9pm. But since I struggled with overnight BGs, my doctor suggested eating earlier to 1.) have more time to fix a problem before bed and 2.) actually get to the problem (i.e. latent digestion issue, post-prandial spikes) sooner. It’s been hard for us but we’re consistently eating by 7:30 or earlier and it’s made a huge difference. It’s meant leaving emails to the next day and not always feeling “settled,” but it’s working. By the time I hop into bed (um….more like lumber and fall these days actually), I’m usually recovered from any issues and going into the overnight with steady numbers.
2.) Using my bolus calculator at times when I”m at higher risk for stacking boluses. For me, the mornings are when I stack boluses aggressively. I would get annoyed if my number started to drift up, feeling like it would ruin my day. Then I’d pile to much insulin on top of itself and end up low by lunch. Making sure I stop to actually plug in my BG and carb count prevents me from overdoing it too much, and that’s exactly what bolus calculators are for.
3.) Slashing carbs even more than before. Summer time is the best time for all my favorite fruits. I look forward each year to peaches and nectarines and watermelon. And those things aren’t totally off the list, but I’ve reduced all carbs in general, including fruit. I make sure to get plenty of nutrition for me and baby with tons of veggies, proteins, and dairy, but when I’m already taking this much insulin and still being resistant, I can help myself by downsizing the carbs. And don’t worry, I’ll make up for it after the baby is here!
4.) Walking every morning. I stopped running at 22 weeks (about halfway through the pregnancy) but exercise is key to keeping my BGs low and preventing me from using up an entire bottle of Humalog a day. It’s meant getting up much earlier on work days, and sometimes it takes a colossal effort to get my sneakers on and a leash on the dog but I have to move my butt every single day, no matter what. A brisk walk after a meal has also helped my insulin work harder and prevent post-prandial spikes.
5.) Doing my best to ignore the scale. This is a pretty hard one. I have gained weight! Already more than the recommended amount for pregnancy but I’m doing my best to not give a crap (easier said than done). Per my doctor, it’s more important that I keep my BGs as good as they are right now than worry about the weight that’s piling on due to taking so much more insulin than I’m used to. I don’t love this new body type on myself but guess what? It’s not about me anymore. And that’s totally worth it to me!
If you’ve noticed I haven’t been blogging much these days, it’s because I actually now live at my doctor’s office. I have packed an overnight bag and some snacks and I now just literally live inside her office, strapped to one machine or another, giving blood samples for one reason or another, and generally habitating at the clinic. I’m going to start taking conference calls there and maybe set up some sort of kiosk to get more work done. It’s gonna be great! I don’t need a bed when I have this comfy exam table to sit on!
Seriously though…I knew having diabetes would mean a lot more monitoring for my pregnancy but Holy. Cow. Seriously I’ll move back in to my home when fall comes….I think….
Yeah that’s a photo of all my upcoming appointments. And yeah that’s two pages of size 8 font. 10 weeks to go and already this baby has taken over my life!
Everyone said it would happen this way. The books, the blogs, and all the doctor friends I have in my line of work warned me: starting at about 24 weeks your insulin needs are going to go up. Like way up. And they’re gonna keep going up until you deliver. So why I wasn’t mentally prepared for this change I don’t know but I wasn’t.
I saw my endo the same week I wrote that particularly depressing, down-in-the-dumps blog post about the guilt I was having with high BGs. Watching her well-trained expert eyes scan my CGM and pump download, I was reminded once again that it doesn’t matter how long I’ve had diabetes, it’s always good to have a (smart) medical professional on your team too. She took a look at one particularly ridiculous evening – the night Thai food had sent me soaring and taken twenty effing units to get back under control, and pulled out a calculator.
“I know this sounds crazy, but I’m calculating your insulin to carb ratio right now at 1 unit to 4 carbs.”
Yep. That did indeed sound crazy. Because I’ve been using 1:10 for several years, and 1:12 or less when I’m training for distance race and ramped up on cardio and now she wanted me to more than double down on that ratio? But we checked the math against some other examples and all signs pointed to “crazy” actually being “spot on.” Except that being that agressive made her nervous, so we split the difference at 1:7, essentially coming down halfway. We also slashed my correction factor by more than half, with one unit for every 20 mg/dL I wanted to come down. And to round things out, we bumped up my basals to an even unit per hour around the clock.
All the tweaks have added up to a much, much smoother past few weeks. Numbers are looking so much better but more importantly, I’m feeling much more in control of my diabetes. There were a few weeks there where I felt like I couldn’t win. And yes, the total daily units are climbing on the pump, but I’m trying my best to just be ok with that. Even if I gain more weight because of taking so much insulin, the baby’s weight is dependent on how much he or she has to output for insulin to combat hiighs. So the best way for me to prevent a big baby is to make sure that little munchkin doesn’t have to overproduce insulin because of a high that I caused. So, let the units pile up – as long as it keeps the BGs down. You’ll see the steam coming off my pump pretty soon with that motor in overdrive!
I realize last week’s post was a bit down in the dumps on the whole pregnancy thing. There are many challenges to being pregnant with T1D, but I don’t want those negative feelings to ever overshadow the overwhelming joy and excitement that I have for this human patiently roosting in my belly. So I think it’s only fair to talk about some of the perks of being pregnant! Ladies and gentlemen, I present: The Top Awesome Things About being Pregnant.
- I get discounts and free stuff for no reason. Seriously. I got a discount at FedEx out of the blue, immediately after being asked “when are you due?” Also got free snacks from my hotel in Anchorage the other night (don’t mess with the hungry pregnant lady I guess!?), and I even got hooked up at Starbucks the other day with a free drink. All this for no other reason than the bulging belly I’m sporting.
- Nobody questions what I eat or when I eat it anymore. There used to be lots of questions about managing diabetes and certain foods but now everyone knows that I am working so freakin’ hard at keep my numbers perfect that they don’t question anything. You want the cheese plate but no crackers with pickled veggies and a side of asparagus? For dinner? Done.
- No longer do I have to feel like I’m dying after a workout to consider it a good one. 20 minute walk? That’s a great Monday workout! If I do that and five minutes of light weights, I’m practically a Crossfit champion.
- People understand that sleep is a priority for me right now. Sorry I’m not sorry that I fell asleep while watching the Real Housewives at your place at 3 in the afternoon. The baby needed it I’m sure. And you gave me a blanket, so thank you for that.
- As soon as people see you coming, they hold open doors, offer to carry your groceries, and lift anything heavy for you. In fact, they practically assist, and I don’t stop them!
- It is truly the one time in your life where you are forced to make your health and wellness the ultimate priority, and that feels pretty darn good. I have moved my health and the baby’s health to the top of my list, and that is a luxury these days! Everything from food choices to exercise to managing stress and work has been modified to help me be the healthiest I can be right now. I don’t think there’s ever been a time in my life where I’ve been able to say that and truly live it.
- And of course, last but not least, my A1c of 5.6% makes me want to get a gilded trophy made in the shape of a pancreas and put it on my mantle surrounded by tiny fireworks and a small parade. Because wow.
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….