Life is busy. My husband and I are chasing a toddler around, in the process of moving and getting settled, getting used to new routines, new commutes, new neighbors and friends, managing family crises, busy work schedules, and keeping up with the Joneses. Through it all, type 1 diabetes (T1D) has played its ever so slightly annoying, white-noise machine part in the stage production that is everyday life. And now there is a second baby boy on the way.
Managing diabetes this time around has been much more challenging than during my previous pregnancy. With everything going on, I don’t feel like I’ve been able to give diabetes the laser-like focus that I was able to with baby number one. It’s not that diabetes can ever be ignored completely, but I feel guilty that my life has been so consumed with everything else that I have not made diabetes the top priority, when I know good and well that ignoring it can have serious consequences.
I should note that this is technically my third pregnancy. My first pregnancy ended in a first trimester miscarriage, completely unrelated to my diabetes. Although I dealt with all of the struggles that most any mother-to-be with diabetes deals with in the first trimester, including increased insulin sensitivity, mind-bending low blood sugars, and even the occasional stubborn high, none of that was necessarily abnormal or unexpected. What was unexpected was my body doing exactly what it should, due to some sort of chromosomal abnormality, and me not being prepared to deal with it mentally or emotionally, and struggling to this day with the wonder of what I might have done to cause it. Even if that answer is nothing at all.
My second pregnancy produced my curious, verbal, incredibly active son. He was active from the very beginning, and caused my blood sugar to trend dangerously low. All. The. Time. His growing and non-stop moving demanded every ounce of glucose produced to go directly to nurturing him as a growing fetus. One night while I was home alone and my husband was away on travel, I woke up soaking with sweat, and a blood sugar level of 26. Thankfully I woke up and was able to get my blood sugar back up to where it needed to be, but that moment convinced me that it was time to get a continuous glucose monitor (CGM) to help me stay on top of all of the lows.
Prior to that night, I was completely against CGMs, and really anything more wearable than an insulin pump that would label me “diabetic” in the views of the people around me. My diabetes was hidden until I chose for it not to be, and that was just fine. Fast-forward to today, and the idea of hiding my diabetes is a complete non-issue to me. Now, I have both an insulin pump and a CGM, and they have both helped me to keep within a tight blood glucose (BG) range during pregnancy, while breastfeeding, and even getting back to work and new routines that now include an extra (and often demanding) mouth to feed.
Although there is a lot more beeping now.
Pregnancy for me means that I need my BG to be around 90 mg/dL pre-meals and around 130 mg/dL post-meals. My last HbA1C was a 5.8%, so that says that I’m pretty close. But I’ll be honest, some of that 5.8% includes lows around 40 mg/dL and highs around 250 mg/dL, and a lot of bouncing back and forth in between. Some weeks I’m able to level that out, but a lot of the time there is this constant bouncing back and forth, which results in my CGM alarming when I cross the threshold of “low” or “high.” These tight BG goals are more easily achieved when I’m not consumed by the thousand other things going on in Kate World. I find that I’m less concerned with the time spent over 180 mg/dL when I’m trying to make sure my son doesn’t eat packing tape while swinging from our dining room light fixture. Which reminds me, we don’t have groceries for dinner tonight. I wonder if what I cook will cause highs or lows overnight. Which box had the pots and pans? Does newspaper ink really hurt anyone if I don’t wash the plates first after unpacking them? I have to check in with work to see if we are meeting that deadline. When was the last time I slept? Stop swinging from the chandelier!
Welcome to the last two minutes of my life. All day. Every day.
I am seeing a completely new team of doctors with this pregnancy. Members of the team that I relied on previously have either relocated or stopped practicing, so my new healthcare team and I are still working on getting to know each other and learn effective ways of communicating and understanding where we are coming from on the various issues that present themselves during pregnancy and with diabetes.
My new endocrinologist doesn’t know the backstory on me or my diabetes. Currently, I feel like I’m little more than just another clinical case for her. There is a lot of judgement and assumptions about my diabetes management that make me feel like a failure, and do nothing to encourage me to work even harder than I already am. I know (or at least, hope) that this will change as we get to know and understand each other and my particular customized brand of type 1 diabetes, but I wish we could get there faster. It makes a world of difference when I can open up and share my needs and the challenges of my diabetes and get advice, empathy, and compassion. I need the type of doctoring that asks questions, and looks at the data and works with me as a partner to come up with new strategies to make improvements.
I am also working with a “regular” OB/GYN who will deliver the baby, and a perinatologist that focuses solely on high-risk pregnancies of women with diabetes. Strangely enough with this dynamic duo of a team, my diabetes is considered the exception, and the pregnancy side of Kate World is labeled as simply “normal.” Although it’s certainly a natural part of life, I don’t feel like there is anything “normal” about being pregnant. Normal women worry about their baby’s health, happiness, organ development, brain function, and able-bodiedness just as much as I do, without having the added worry of the ups and downs of diabetes. Pregnancy isn’t just about the glow and the setting up of the nursery. Pregnancy does a lot to a woman’s body and her mind in a lot of different ways, and none of these changes are anywhere close to what “normal” feels like with diabetes.
All of these challenges drive the need for a different type of conversation than what we’re currently having with our healthcare teams. The research and perspectives featured in The PLAID Journal, along with insights from the diabetes community at large, are examples of content that can help us learn to better advocate for ourselves. These perspectives can help our healthcare team members as well, and guide them toward better strategies to help us meet the goals that benefit us both. We have to advocate for different kinds of conversations than the traditional “you have diabetes, therefore you’re going to have a complicated pregnancy” conversations, whether that is clinically applicable or not. I know that I have diabetes. They know that I have diabetes. Beyond us both stating the obvious, I need a physician partner who is agreeable to combining our knowledge and experience to find solutions that lead to better, healthier results.
I want to have a healthy and happy baby. I want people with diabetes to know that they can pick and choose the tools and technology that works for them and their diabetes. Through my many years of becoming my own diabetes expert and an advocate on behalf of the diabetes community, it is a goal of mine to help education others that doctors – with all of their many years of schooling, degrees, and hours of practicum and residency – are people first, who are caring for and being empathic towards others at the very core of their job. Sometimes we have to give our healthcare team time, and a chance, and guide them to what we need. If we extend this courtesy, they likely will as well, and will be more eager to support us along the way. Most importantly though, I want all parties involved to know that having a healthcare team that understands you, who enables you to be able to appreciate and benefit from each other, makes pregnancy and diabetes infinitely more conducive to success. Communication is key, and will help you to deliver a healthy child and yourself from the trials of pregnancy into the joy that is parenthood. Even if you still have to listen to the beeps and boops of diabetes.
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