In Vlog #5, I share Halloween well wishes to the DOC…as well as a frightening tale fit for the season. You won’t want to miss this spooky little video. You’ve been warned!!! Press play now and let me know what you think by leaving a comment.
It was the statistic that impelled me to learn more information:
“Approximately 1 in 50 people with diabetes have monogenic diabetes.”
I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.
Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.
As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.
Here are some “fast facts” that I learned about monogenic diabetes:
- Most cases of it are misdiagnosed as type 1 or type 2 diabetes
- Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
- There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
- The individual received a diabetes diagnosis within the first 6 months of life
- The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
- The individual has a stable fasting blood glucose between 100 and 150 mg/dL
- From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”
Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).
But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.
It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.
Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below:
Newsflash: I’m not a perfect T1D. Shocker, I know!
Every so often, I like to remind myself that perfection is impossible, especially when it comes to my diabetes. But all my life, I’ve yearned for it in a hopeless pursuit. I agonized over essays before submitting them for grading in high school and college. I have a penchant for baking, which requires precision in order to be successful. And I’ve done virtually everything I can do to get and maintain “perfect” blood sugar levels at all times. Which of those named feats sound the most fruitless?
So to help remind myself that T1D shouldn’t be about perfection, I decided to compile a list of “confessions” about my not-so-perfect T1D tendencies. I think it’s important for me to share them here, since we are in an age of showcasing diabetes “wins” over “failures”: Straight, in-range CGM graphs, A1cs below 6%, balancing a social life with a career and family and other responsibilities ON TOP OF diabetes…these things should be celebrated, but we also shouldn’t forget about the lessons we learned along the way to help us get to these points of dia-winning. Plus, projecting an air of perfectionism at all times is just absurd and we all need a reality check sometimes, myself included.
Here are my five confessions. Which ones can you relate to?
5. Sometimes, I conveniently “forget” that I have diabetes and snack freely on food that I shouldn’t, or that I should bolus for. It’s a bit irresponsible of me, but if I notice that my blood sugar is between 90 and 140 or so, I help myself to a little snack from the kitchen. It’s never anything too big; for example, I just ate a mini dark chocolate peanut butter cup because I noticed my blood sugar was 132. But it is almost always something that will make my blood sugar go up a bit, and I need to stop fooling myself into thinking that these snacks are “free”.
4. Until recently, I never had a stash of ketones test strips (out of pure laziness). Ugh, such a diabetes no-no. Someone slap me on the wrist. In my teenage years, though, I found that we’d stock up on ketones strips only for them to expire before I could use, well, any of them. So I thought to myself, why bother buying them if I can’t even get any use out of them? Luckily, I came to my senses just a few weeks ago and realized that it’s always better to be prepared, even if it means spending a few extra bucks unnecessarily.
3. Organization of my diabetes supplies is…lacking. On Instagram, people are constantly showing off their beautifully organized diabetes drawers and bags and pantries…and I have serious envy of their carefully curated supply stashes. I’d describe mine as something more like an organized mess. I’ve got my Dexcom G6 sensors stacked haphazardly in the closet because they don’t fit in my set of three plastic drawers that hold everything else in a total nonsensical manner. When it comes to diabetes, I’ve got higher priorities than organization, even though I do appreciate tidiness in general.
2. Self-control is not a concept that exists to me when my blood sugar is low. I know some people with diabetes who have restraint when their blood sugar goes low: They treat it with around 15 grams of carbohydrates and wait about 15 minutes to make sure that they’re headed in the right direction before doing or eating anything else. Wellll…that is not me, especially in cases when my blood sugar goes low in the middle of the night. I’m not proud of it, but every once in awhile, I’ll roll out of bed (no matter how early or late it is) and head straight to the kitchen to treat a low with cereal and peanut butter and cookies and anything sweet I can get my hands on. It’s not pretty.
1. I take extreme care when it comes to using my diabetes supplies in a sanitary and recommended way, but if there’s one thing I couldn’t care less about, it’s lancets. Ideally, lancets are disposed of and replaced on a routine basis. But…I just…don’t do that. Honestly, I don’t really remember the last time I changed my lancet. I definitely do it at least once a month (which might make some doctors squirm) and usually before I travel somewhere. I don’t know…when it comes to diabetes, there’s so many other things that take a much higher priority in my book. Plus, at least I do change my lancet multiple times throughout the year – I know of some other T1Ds who have ‘fessed up to doing it ONCE a year, on January 1st, and that’s it! God love ’em. I know I do for their blatant honesty!
12:55 A.M. I wake up from a deep sleep to the sound of my CGM going off: My blood sugar had just gone above my high threshold. I silence the alert and reach for my PDM so I can give myself a small correction bolus. But it’s not in its usual spot on my nightstand.
12:56 A.M. I tumble out of bed and wander into the living room. Surely, I left my PDM somewhere out here. I dig through my backpack, check the coffee table, and look for it on the counter tops in the kitchen. I can’t find it in any of those locations.
12:57 – 1:00 A.M. I’m searching all over the apartment, like a mad woman now. I’m checking in between couch cushions, inside cabinets, and underneath furniture at a lightning-fast pace. My heart is beating rapidly as I wonder where the actual eff my PDM could be. I shake my sleep and bemused partner awake, fill him in on the situation, and enlist his help in the search. He only has a vague idea of what the PDM looks like (I have too many devices for him to be able to distinguish the difference between them) and isn’t much help, but he does offer a tip: Check the car.
1:00 – 1:03 A.M. I run down four flights of stairs and into the parking garage where my boyfriend’s car is parked. Maybe it fell out of my backpack on our way to trivia at a restaurant earlier that evening? I rifled through the passenger seat, checking underneath it and even in the backseat, but no luck.
1:04 – 1:07 A.M. I practically break out in a cold, panicked sweat as I contemplate the possibility that I took my PDM out at the restaurant and it’s still there. I knew for a fact that I hadn’t used my PDM for anything since I’d eaten dinner hours before at the apartment, but it was worth calling the restaurant to see if they’d found anything. I called, knowing the odds of anyone answering at this hour were slim…only to be proven wrong! I was relieved when a man picked up, and I hastily explained to him the situation. I provided a description of my PDM and waited with bated breath while he searched the area in which my team had sat to play trivia.
1:08 – 1:11 A.M. Crushing disappointment crashes over me like stormy ocean waves as the man tells me, after a prolonged search, that he couldn’t find my PDM. I felt like I’d been punched in the gut. Numbly, I recited my contact information over the phone, thanked him for his time, and hung up. I was beyond panicked now. My boyfriend was asking me about a contingency plan and all I wanted to do was scream at him, my OmniPod IS my contingency plan!!!!!!!! I start formulating a plan to drive to the restaurant first thing in the morning to search the premises myself, as well as call Insulet and beg them to overnight a new PDM. Maybe I would just have to stick to manual injections the entire next day, though I had no idea what I’d do about long-acting insulin since the Lantus sitting in the fridge expired months ago.
1:12 – 1:14 A.M. My mind was in overdrive and I refused to give up right then and there. I was absolutely certain that I hadn’t taken my PDM out since my dinnertime bolus. But since I did go out that night, there were really only one of three places it could be: the apartment, the car, or the restaurant. It definitely wasn’t in the apartment, which I’d searched so thoroughly that it looked like a tornado had whipped through it, but it was worth searching the car one more time…just to be positive.
1:15 A.M. I make my way back down to the parking garage. I turn my cell phone’s flashlight feature on and scan the seats carefully, peeking under and over and around every possible surface…I didn’t see a damn thing. Defeated, I turned to close the passenger side door when, out of the corner of my eye, I saw a gray object wedged between the door would be when it was slammed shut and the seat. It was practically camouflaged, that’s how well it blended with its surroundings. It was…MY PDM!!!
“Relieved” doesn’t begin to describe how I felt. “Elated”, “victorious”, and “exhausted” are all better descriptors. I ran back up to the apartment, told my boyfriend, and breathed a deep sigh, glad that the entire episode had a happy ending. We settled back into bed, though I lay there staring at the ceiling for a long time afterwards. If I hadn’t double checked the car, my boyfriend would’ve just driven off to work the next day, both of us oblivious to the fact that my PDM was there. I would’ve wasted time trying to track it down at the restaurant and calling Insulet, and there probably would’ve been a lot more frustration felt and tears shed.
But thank goodness it didn’t come down to that.
The end results of the missing PDM episode was 1) losing a decent night of sleep, 2) feeling an urgent need to establish a better contingency plan, and 3) feeling an even more pressing need to install a tracking device in that damn PDM, stat…because that thing is just too easy to lose.
This post initially appeared on Hugging the Cactus on February 26, 2018. Since I’ve already dealt with two bouts of congestion and coughing this cold and flu season, I figured it was appropriate to republish this post to remind myself of my philosophy when I’m run down with illness: Don’t push myself and give my body time to rest as much as it needs in order to get better faster.
The inevitable finally happened: I caught a cold. It really didn’t surprise me, because 1) it’s cold season and 2) I’ve been running around like a mad woman the past couple weeks and missing out on sleep.
Though it was expected, it certainly wasn’t welcome. I can’t stand being limited with my activity levels, and it’s been tough enough to get by recently due to my broken arm. Alas, I spent about three full days doing nothing but sleeping and binge watching Gilmore Girls as I nursed myself back to health.
During this time, I was extra concerned about my blood sugar levels. They tend to be better when I’m active, so I was worried about how they would fare when I was moving so little.
I admit that I probably did the wrong thing by not eating much during this time. It seemed like I needed to pump myself up with a heftier dose of insulin any time I was eating a meal, likely to compensate for the lack of movement. Even so, I seemed to spike a little too much for my liking after meals. So I really cut back on food. In hindsight, it wasn’t my best move, because even when I did eat it was not healthy (few fruits/veggies, mostly breads and fats).
But I do give myself credit for staying hydrated – a crucial step in getting better. I drank so much water, Powerade, and tea that I felt like I was constantly taking trips to the bathroom. It was worth it, though, because it’s easy to become dehydrated when sick and make a bad situation worse.
Also, I think I made the right move by taking some sick time from work. The day I woke up with a tingly throat, I thought I could soldier on and work a full day, but it became clear the moment I sat down at my desk and couldn’t focus that it would be best to just go home. I took a sick day the following day and was able to work from home the day after that, so I’m grateful that I have a flexible and understanding employer who knows that health is a priority over everything else.
As much as I loathed being mostly confined to my room for 72 hours, it was the smart call. It reminded me how important it is to listen to my body and to not push it when I’m not feeling 100%. There’s no shame in self-care.
In this edition of Favorite Things Friday, I share a great new book that I just read: The World’s Worst Diabetes Mom by Stacey Simms!
Disclosure: I bought this book on my own and this review is unpaid. I am writing this to share an excellent book that was written by someone I consider a personal friend and wonderful diabetes advocate. This is my honest review of the book.
Hey, Cactus friends! Welcome to another Favorite Things Friday post. I’m really happy to write this one up, for a few reasons: 1) Stacey Simms is a terrific human being and I’m glad we met IRL for the first time a few years ago, 2) I enjoyed reading her personal experience with diabetes, and 3) I think this book is pretty important and I’d like to share the reasons why with you all.
Oh, and it’s also got an awesomely intriguing title that will definitely make you want to know why Stacey is publicly declaring that she’s the world’s worst diabetes mom…a bold statement, indeed!
So I don’t know about you, but I had no idea until a few years ago that there are actually a LOT of diabetes books out there. Some are memoirs, others are guides. And there’s even some that address specialty subjects, like pregnancy and diabetes.
Stacey’s book is a fusion of a memoir and a guide. It’s all about her son Benny’s diabetes diagnosis and the lessons that she and her family have learned over the years. Each chapter focuses on a different topic – examples include going to diabetes camp, playing sports with diabetes, and vacationing with diabetes – and ends with a list of questions that readers can ask themselves to help them navigate these specific scenarios.
What I liked so much about this book is that I learned a lot from it: It’s not just for those who are new to diabetes. (I’ve had diabetes for more than 20 years and I am constantly learning new things!) My eyes were really opened to the perspective of a parent whose child was just diagnosed with diabetes. Not only did it help me understand the emotions my parents were probably experiencing throughout my childhood, but it also proved to me that loved ones who don’t even have diabetes go through a lot, too. They might not have to physically endure the pokes and prods or deal with the exact same feelings that those of us with T1D do, but that doesn’t mean that they don’t feel immense guilt or worry for us because they just want to do everything in their power to help ensure that we live normal, fulfilled lives. That’s an awful lot of pressure to put on oneself.
Stacey’s honesty and transparency with her family’s diabetes experience gave the book a powerful emotional punch. She owns up to all the times that diabetes has made her cry tears of sadness or yell from frustration. And refreshingly, she doesn’t shy away from sharing the past mistakes and less-than-ideal scenarios that her, Benny, and her family had to work through. I was appreciative of that because, like Stacey, I feel that there is too much of a focus on “perfectionism” when it comes to diabetes, especially these days. It’s an impossible standard that many of us set for ourselves when we should put more attention on the little victories we achieve along the way on our individual diabetes journeys.
In the final chapter of the book, Stacey shares more of her thoughts on the pressure to be perfect. The following is my favorite passage from the book:
After reading this book, you know I don’t believe in the pursuit of diabetes perfection. Even so, I’m still surprised at how many people expect it, who strive for it and feel guilt or shame because they feel they don’t measure up. We were lucky our endo told us right away that T1D management is just as much art as science. Over the years, I’ve come up with my own philosophy about Benny’s diabetes care: Don’t worry about perfect; go for safe and happy. Do I love my child? Am I doing my best? Is he happy? Is our endo happy? Yes. Then let’s keep working in that right direction.
I’ve shared that thought with parents who’ve then burst into tears. That’s not a joke. The realization that a happy, healthy child is enough can be a revelation.
By now, I’m sure you’re ready to pick up a copy of the book and find out from Stacey herself why she gave herself the “worst diabetes mom” moniker (because yes, I deliberately did NOT explain it in this post because I think it’s best explained by the author). You can pre-order a copy of the book here, and to hear more from Stacey, be sure to check out and subscribe to her podcast “Diabetes Connections”, available on the Apple podcast app, Android, and any other podcast app of your choice.
The other day, I nearly LOST IT on the phone with an Insulet representative.
I’m not proud of it, but I also was not sure why this particular phone call was taking so long.
I was calling in regards to a pod failure – something I’ve had to call and report many times before, so I’ve become very familiar with how the usual phone call goes:
Me: Hi, I’m calling to report a pod failure.
Insulet Representative: Okay, could I have your first and last name, date of birth, and shipping address?
*I provide the information.*
Insulet Rep.: Thank you for verifying your information. Could you please tell me about the pod failure incident?
*I explain what happened with the pod failure. The rep will ask me a series of follow-up questions, such as where was I wearing the pod? How long was I wearing it before the failure? Did I notice anything unusual about the pod activation? Did I need to seek medical assistance for the pod failure? Typically, this is the list of questions I’m asked, and then I finish my call with the rep.*
Insulet Rep.: We’ll be sending you a replacement pod. We will send it via standard shipping, meaning it will arrive in 7-10 business days. Is that okay with you?
Me: Yes, thank you.
*And then after exchanging pleasantries, the call is over. Standard running time on the phone is about 6-7 minutes. No big deal at all.*
So imagine my surprise, and growing ire, when a phone call that should’ve only lasted a few minutes stretched just beyond 20 minutes.
I still don’t really know why it lasted so long. The agent I spoke with was asking me WAYYYY to many follow-up questions regarding the pod failure, and what made it especially irritating was that I’d already explained every single detail surrounding the whole incident. It was like she was questioning my reporting abilities. Either that or she was really slow with taking notes, and maybe I was talking too fast for her? Who knows. All I knew was that I was calling in the middle of my workday, and I had to get this wrapped up ASAP so I could turn my full attention back to my work.
That said, it was difficult to stay patient, and I probably slipped up toward the end of the call. Actually, I totally slipped up, because my answers to her questions became very curt in my attempt to expedite the call…which didn’t work, by the way.
I felt a tinge of guilt for my brusqueness. After all, I used to be a customer service representative who spoke with her fair share of irate customers. I knew it would be appreciated if I at least said a sincere thank you before hanging up. So I did, and even though I wasn’t exactly proud of myself for losing my cool, I was glad that I could turn my attitude around in the end.
It’s kind of a metaphor for how I’m trying to handle my diabetes these days…allow myself to feel how I want to feel, but then go about handling whatever situation is in my way using a level head. Because that’s how to make things happen, IMHO.