Packing for my 1st Trip Post-Vaccine…Diabetes-Style

I’m going away this weekend!

It’s just a one-night trip, but one that I’m super-excited about for a few reasons: 1) It’s for my best friend’s bachelorette weekend, 2) it will be the first trip that I’ve taken since I got vaccinated, and 3) it will be the first time in just shy of a year and a half that I will be gathered in-person with a group of people.

My anxiety and nerves are starting to kick in, but it’s not because I’ll be under one roof with nine other people (every person attending has been vaccinated, in most cases completely, and each individual will be taking a rapid-result COVID test to ensure the health and well-being of everyone for the duration of the weekend). Rather, I’m on edge because I feel like I’ve forgotten how to adequately prepare for an overnight trip.

Packing for a trip during a pandemic in which vaccines are becoming more and more available is just…uniquely different compared to how packing for trips used to feel.

Let’s be real, prior to the pandemic, traveling with diabetes could get tricky. Even if I was only going to be an hour away from home, I’d still pack back-ups for my back-ups, or at least do my very best to do so (let’s pretend that I did during that near-DKA episode a few weeks back). In addition to normal overnight trip things like clothing and toiletries, I’ve always had to leave extra room in my bags for spare pods, alcohol swabs, insulin vials, my meter, and the like. But for this trip, not only do I have to be cognizant of packing the “normal” stuff and the “diabetes” stuff, but I also have to take care to remember the “bachelorette” stuff – snacks, paper goods, and alcoholic beverages that I signed up to bring. And extra masks, hand sanitizer, and such because I want our group to be protected and to help protect others. There’s just so much to remember! I’m positively terrified that I’ll forget something, but I can’t let my stress cloud my thinking because that won’t lead to a positive outcome.

As a result, I’ve come up with a strategy to make sure that at the very least, the diabetes aspect of traveling is well covered. I started packing earlier in the week and made out a list of the must-bring items as well as the just-in-case items. I went to the store to buy extra juice boxes and snacks so I won’t have to worry about access to food at all times. I’m definitely erring on the side of cramming so much into my bag that the seams will split, but you know what they say – better to be safe than sorry.

So when I head out of the house tomorrow morning, my arms will be laden with so much stuff that it’ll appear as though I’m going away for much longer than one evening. But such is life – not just with diabetes, but with people you care about who make it worth it to bring so much to a weekend getaway.

What to Do When a Loved One with Diabetes is Struggling

This blog post was originally published on Hugging the Cactus on March 20, 2019. I’m sharing it again today because as tough as diabetes can be for me, it can be even harder on my loved ones who can’t do anything about it – especially when diabetes struggles turn into emotional struggles. Read on for my opinion on how you can help your loved one with diabetes overcome difficulties.

If you have a partner/spouse, relative, or friend with type one diabetes, it can be difficult to know how to best support that person when they’re experiencing struggles related to diabetes. You might try to offer a shoulder for your loved one to lean on, but that might not always work. Your loved one might push you away or continue to internalize their issues. It can create turbulence in your relationship with one another, and it’s frustrating all around.

So what can you do?

Emotional support is incredibly important when it comes to helping a loved one with diabetes get through a difficult time.

As someone who both has T1D and loves others with T1D (my mom, my aunt, many good friends), I believe that the best way to react is to just listen. Whenever I’ve faced serious struggles or emotional turmoil due to diabetes, nothing has helped me quite like a person who spares time for me to listen to me. Whether I just need to spew out an angry diatribe (LOL at the pun), cry about my problems, talk through issues, or seek advice, it’s worked wonders on me to know that I have individuals in my life who are willing to listen to me. Let me emphasize the listen part once again – listen, not tell me that I’m right or wrong, or offer advice (unless I specifically ask for it).

I get it; sometimes, it’s easier said than done to just listen. A few people I know are so determined to help me fix the problem that they can’t help but react emotionally along with me when I’m dealing with diabetes drama. But trust me, that usually heightens (rather than alleviates) the tension.

It’s all about teamwork. Give and take is involved. Often, enormous amounts of patience are required. Sometimes, it takes awhile for the struggles to subside. But one thing that is certain is that your loved one with diabetes will always thank you and be grateful for your support in their time of need. It’ll strengthen your relationship as well as function as proof that diabetes can’t break your bond, no matter how hard it might try.

Dodging DKA: What Happened and What I Learned From It

In 23ish years of life with type 1 diabetes, I’ve never really experienced DKA…and I feel wildly fortunate to have avoided it.

But the other day, I came extremely close to it, and it’s something I won’t soon forget.

Here’s what happened: It was the wee hours of a Sunday morning. I woke up because I had to use the bathroom. My pod was on my thigh. I was due to change it that Sunday evening. I noticed that the pod’s adhesive folded up in the exact wrong way (it was crinkled up by the cannula), causing the cannula to bend and dislodge itself from my body…

…except I didn’t make that super-important observation until around 11 A.M., after several hours of tossing and turning in bed, unable to sleep because I was battling both a headache and stomachache.

What’s more is that around 10 A.M., I noticed that my CGM had been reporting a high blood sugar since about 5 A.M., and I simply hadn’t heard it alarming. When I saw that I was high, I took a bolus, but I didn’t bother checking on my pod because to my knowledge at that point, there was nothing wrong with it. Fast-forward to one hour later to when I did discover the dislodged cannula and I was feeling downright terrible: My stomachache turned into full-blown nausea, my head was pounding, my throat was drier than the Sahara, I couldn’t unfold myself out of the fetal position, AND I was feeling incredibly stupid for 1) missing my CGM’s blood sugar alerts and 2) not checking my pod to make sure it was secure to my body.

What bothered me more during this whole ordeal: my headache, my stomachache, or my anger at myself for letting this happen? (If you guessed the latter, then you’d be right.)

Fortunately, I did have a back-up pod and insulin with me, so I went about activating the new pod as quickly as possible. I felt a fleeting sense of relief when it was on me, but that relief turned into panic when I felt a swooping sensation in my stomach that indicated I was about to be sick. I ran to the bathroom and retched once, grateful that nothing actually came up, then sank down on the floor in shame, wondering how I could let myself get to this point of obvious borderline DKA.

The next few hours passed in a blur as I crumbled back into bed. I drank as much water as I could stomach, gave myself bolus after bolus, increased my basal rate, and tried to settle into a comfy position. I was extremely lucky that I wasn’t alone during this whole ordeal: My significant other was very concerned and doing everything he possibly could to help me. I was and am still so grateful for his care and attention. I didn’t admit it to him, but I was a little freaked out by the whole experience, but I took consolation over the fact that it didn’t come down to him having to bring me to the hospital.

By 4 o’clock that afternoon, my blood sugar was finally below 180 again and I was able to eat a little food, though I wasn’t overly hungry. I spent the remainder of the day beating myself up for letting this happen, but I guess that if I learned anything from it, it’s that I need to remember to 1) keep the volume turned up on my CGM so I can hear the alarms going off overnight, 2) check my pod immediately after hearing a high alarm so I can rule out any obvious pod issues, and 3) bring a syringe with me wherever I go so I can inject myself with insulin/get it in my system faster than a pod would be able to.

The experience also taught me a couple of other things…DKA is very real, very dangerous, and should be taken very seriously. The fact that I just barely dodged it is a jarring reminder that I should never underestimate it. On a much lighter note, though, I also proved to myself that I’m able to take control of a situation like that the moment I become aware of what’s going on. Thank goodness I was at least prepared enough that I had an extra pod and insulin on hand. I hope there isn’t a next time, but if there is, I know exactly what to do in order to take care of it as quickly as possible, thanks to this icky experience.

How My Diabetes and I Handled My Second COVID Vaccine

Last week, I received my second dose of the Moderna COVID-19 vaccine.

Dose number two was definitely different compared to dose number one.

Hanging out in CVS after my second dose. Don’t mind my cheeky shoe – from this angle, my footwear looks sassy, but it’s supposed to say “oh” (the other shoe says “hey”)

How so? Let me start by going over the fatigue I felt. It started to hit me around 9 P.M. on Tuesday evening, several hours after I received my shot. I just felt sleepier than I normally do at that time, and as a result, I went to bed as early as I could.

I woke up a few times in the middle of the night because of the pain that I felt radiating throughout my upper arm. I couldn’t believe how sore it felt! In fact, the site was so tender that sleeping on the left side of my body was a no-go – I didn’t want to do anything to increase the ache in my arm. Other than that, the only other disrupter to my sleep was feeling a little chillier than usual, though that was quickly fixed with the addition of another blanket.

So that was how I fared overnight. What about the morning? I slept later than usual, only rousing to turn off my alarm and drink a bottle of water (I’d heard that staying hydrated would help). I got out of bed around 10:15 A.M., only because I couldn’t sleep anymore and wanted to try to get some work done. But when I stood up for the first time, I recognized that my body was achy, like it was trying to recover from an intense workout I’d done the day before. It was nothing too terrible, but definitely noticeable.

I ate a small breakfast and logged onto my work computer, convinced that I could power through my soreness and grogginess and work the rest of the day. Boy, was I wrong. By the time I got out a meeting that went from 12:30-1:30, I was incredibly tired. Pressure had built in my head and behind my eyes to the point that they were very heavy, and I was so cold that two blankets and a cup of tea were doing nothing to warm me up. My mom (bless her) retrieved a heating pad for me which helped me get warm enough to comfortably fall asleep and take my first nap of the day.

The rest of the afternoon and evening was a cycle of waking up, trying to get out of bed, realizing I was too fatigued to do anything other than lay around, and either succumbing to more sleep or snuggling with my puppy and my parents’ dog. By the time I went to bed (for real) that night, I was starting to wonder whether I’d wake up feeling the same, or if my symptoms would subside come morning.

And guess what? I was 100% back to normal the next day! The moment I opened my eyes, I knew that I was back in commission. The only side effect I still felt was soreness in my upper arm, but even that went away about 48 hours or so after I got the shot.

The very best part (besides being fully vaccinated, of course) is that my blood sugars were not seemingly impacted by the vaccine. Maybe they ran slightly higher than usual, but I’d chalk that up to my lack of movement throughout the day rather than blame it on the shot (I wasn’t feeling well enough to go on my daily walk or do my exercise circuit; that, coupled with laying around all day, meant that I’d run a little high whether or not I’d just been vaccinated).

So yeah, I was mentally and physically tired the day after I got my vaccine, and my arm was a bit sore. Those side effects were more than worth it. Now that I’ve received both doses of the Moderna vaccine, I’ll continue to mask up and practice social distancing in public, but I’ll also now gather with fully vaccinated family members and friends to make up for lost time…and do so with far less anxiety and fear now that we’re all more protected.

28 and Feeling Great

I turn 28 years old today!

As I say farewell to 27 and welcome a new year of life, I can’t help but reflect on how different the world was this time last year.

The pandemic was in full(er) force. The new normal was just establishing itself. Each day was scary and uncertain as hopes for a vaccine any time soon were somewhat bleak.

Fast-forward to the present: As the weather gets warmer, social distancing and masking guidelines are easing. More and more people are getting vaccinated on a daily basis. While we’re far from returning to life before the pandemic, we’re definitely much closer to being able to enjoy the simple pleasures in life (such as hugging a family member or friend) with less anxiety.

So even though the milestones I met in my 27th year (buying my first home, getting my puppy, surviving heartbreak and falling in love again, to name a few) are things that I celebrate daily, I’m also really looking forward to the minutiae of the next 365 days…seeing my family and friends in-person more frequently, breaking out of the bubble (safely, of course) that is my home, going to new and old places for both familiar and unknown experiences…in other words, I’m excited to embrace the things that I took for granted pre-pandemic.

Me with one of my favorite parts of 27

I’m hoping that year 28 brings a whole lot of “great” with it: lots of love, joy, adventures, and hugs from all the people that I’ve missed hugging in the last year or so. Just like with everything else in my life, I’ll bring my diabetes along for the ride and celebrate it, too, because it just makes me appreciate all the things that make life worth living that much more.

Do You Know What It Means to “Sensor Soak” Your CGM?

This post was originally published on Hugging the Cactus on September 27, 2019. I’m sharing it again today because I still find the concept of “sensor soaking” to be fascinating, though I haven’t been brave enough to try it yet. Not sure what sensor soaking is? Read on to find out…

I saw an Instagram story a few weeks back that intrigued me.

In it, a friend of mine was talking about how she “soaks” her CGM sensors. Instantly, I was confused: What the heck did she mean by that? Soaks them in what, hot water or some other liquid?

Contrary to the connotation of the word “soaking”, this does not mean you’ll be submerging your CGM in any sort of liquid.

Within seconds, her definition of “soaking” became much clearer. “Soaking” a CGM sensor means inserting a fresh sensor hours before you intend to activate it. Rather than giving your sensor just two hours to warm-up, you’re giving it 4-6 hours so it can supposedly provide much more accurate readings immediately after the warm-up period has ended.

I was interested in this practice because I’ve definitely experienced sensors that were off for several hours post-insertion/warm-up. Sometimes, it even takes a full day for a sensor to start reporting accurate numbers, and I wouldn’t exactly call that efficient.

While I haven’t had the guts to actually try sensor soaking yet – I’d like to sometime in the near future – I’ve been doing some research on it so I’m fully prepared to try it whenever I’d like. Here are some questions I had about the process, and the answers I’ve found to them:

Q: Doesn’t this mean that you’re wearing two sensors at once?
A: Yes. But it’s only for a short window of time, until the old sensor expires and it’s time to activate the new one; in other words, for the full soaking period.

Q: How long should I let a new sensor soak?
A: According to what I’ve found online, it seems that 4 to 6 hours is the sweet spot for soaking. It’s basically doubling or tripling the built-in warm-up period that all sensors must go through, so I can see how this might contribute to improving immediate accuracy.

Q: How do I protect the new sensor if it doesn’t have a transmitter snapped in it for several hours?
A: The reason why I haven’t tried soaking yet is because I was worried about wearing a sensor that didn’t have a transmitter snapped in it. But I found some photos online of people who wore transmitter-less sensors with stretchy, self-adhesive wrap tape to protect the nook in which transmitters rest for the soaking period. It’s smart to protect that space, because in theory, it could be vulnerable to catching on clothing or other surfaces. Plus, tape like that is really easy to remove without damaging the sensor in the process.

Q: What changes about the sensor activation process when it’s finally time to start the new soaked sensor?
A: My research leads me to believe that nothing really changes at the end of the soaking period/when it’s time to activate the soaked sensor. All that will be needed is the sensor code so it can be properly activated within the receiver/Dexcom app. So the most important thing you can do at the very start of the soaking period is hold onto your sensor code/store it somewhere safe so you’ll be able to enter it at the end.

Q: So…why would anyone bother trying this again?
A: My understanding is that it all relates back to making sure a fresh sensor is as accurate as possible once it’s activated. I can’t tell you how many times I’ve put on a new sensor, only to discover a few hours after it has warmed up that it’s off by 40 or 50 points – and that just doesn’t cut it. So I don’t think there’s any harm in me giving sensor soaking a shot one of these days. I just have to remember to do it, and have the patience to wear three devices at once (my pod, the soon-to-expire sensor, and the new soaking sensor).

Have you tried soaking? If so, please drop a comment and let me know your thoughts on it – and be sure to tell me if I missed any key steps in my research!

3 Things That Make Low Blood Sugars More Tolerable

This post was originally published here on Hugging the Cactus on August 21, 2019. I’m sharing it again today because it’s the perfect little companion to Monday’s more hateful post geared towards high blood sugars.

Okay, to be TOTALLY honest, low blood sugars aren’t – and won’t ever be – fun. Nine times out of ten, they can be inconvenient, upsetting, and even scary (depending on how low it is). But like most things associated with diabetes, I try to look at the bright side every now and then to remind myself that it could be worse. So even though I don’t welcome low blood sugars in just about any circumstance, I decided to look at them, and their less-than-pleasant side effects, from another perspective. Hence, this three-item list that explains what makes low blood sugars slightly more tolerable to me.

#1: The sweat. I detest sweating. I don’t care if sweat is the result of a good workout or a day spent at the beach – it’s gross either way. And it’s definitely not an attractive low blood sugar symptom. But…on the other side…I tend to sweat a LOT when my blood sugar is low and it makes me feel like I’ve just had an excellent workout without any effort or exertion on my part. So I guess it’s kinda like gleaning the health benefits that you’d get from sitting in a sauna for a bit? IDK…it’s a bit convoluted but just agree with me on this one.

#2: The excuses. I’ve made it a personal mission to try to avoid using my diabetes as a scapegoat. There are times, though, that it really does prevent me from doing something in a timely manner/when I’m asked. For example, if I’m experiencing a low blood sugar at work and a colleague comes by to talk to me and ask me for something, I do find it’s best to let them know that I can’t attend to it right away because of the blood sugar. Nine times out of ten, people understand, and they let me treat it accordingly. And it gives me time to just relax and deal with it, taking the stress away from a situation by simply being honest about it (so I guess it isn’t really an excuse, but sometimes I feel a little guilty about using a low as an out on something. Low guilt is real, people!).

#3: The cake. (Or really any food when you’re low. Because it all tastes delicious. But nothing is quite as satisfying as cake.) I think the inspiration for this blog post came when I was enjoying a big, fat slice of cake in order to bring my blood sugar back up. My goodness, some foods just taste beyond amazing when I’m using them to treat a low. The sweeter it is, the more satisfying it is to both my taste buds and blood sugar levels. And anyone who has experienced a low blood sugar before (people with and without diabetes) can attest to the fact that food is simply a million times better when it’s being consumed at a time that your body is URGENTLY telling you to feed it.

Alright…now that I’m looking back at these three things, I’m kind of laughing at myself. Because I can TRY to make low blood sugars a more positive thing, but let’s be real, they still kind of suck. But I guess there’s no harm in trying to be upbeat about them.

8 Things I Hate About High Blood Sugar

This was originally published here on Hugging the Cactus on April 5, 2019. I’m sharing it again today because this is an evergreen post, the kind that will always ring true for me. These are the things I simply cannot stand about high blood sugar…

High blood sugar, high bg, hypergycemia, sky high…whatever you want to call high blood sugar, it doesn’t change how I feel about it. I hate it. My loathing of high blood sugar is probably not unique among other T1Ds – I’m sure most would agree that it’s the worst – but on a recent and particularly bad day of high blood sugars, I started thinking about why I hate being high so much and it turned into this blog post…which turned into a very cathartic thing for me to write.What do you hate about high blood sugar?

What are the eight things that I hate about high blood sugar? Here they are…

#1: It makes me thirsty. This reference may be lost on some of my readers, but to those who get it, it’ll be wildly funny (or at least it will be in my mind): *Parched Spongebob Squarepants voice* “Waaaaaaaaater! I neeeeeeeeed it!” When my blood sugar is high, I basically turn into that shriveled-up version of Spongebob that appeared in the episode in which he visits Sandy the squirrel’s treedome for the first time. He doesn’t realize that, being a mammal, Sandy doesn’t depend on water like he does to be able to live/breathe. Hence, he struggles throughout the episode to stay hydrated. I bet that if he were dealing with a high blood sugar at the same time, his desperation for water would become much more dire…because let me tell you, I simply cannot drink enough of it when my blood sugar is above 200. This results in many trips to the bathroom, and as I’m sure you can imagine, it’s pretty annoying.

#2: It turns me into a major grump. Nothing kills a good mood quite as swiftly as high blood sugar…I don’t like admitting it, but I tend to snap at people when my blood sugar’s elevated. So really, it’s a lose-lose situation for everyone.

#3: It’s a weight on my shoulders. If my blood sugar is high, I can’t help but wonder what I did wrong to make it so. Did I miscalculate my carbs? Should I have given myself more insulin? Should I have timed my exercise better? Is my insulin pump work properly? The list of questions and possible answers are practically endless, and it weighs heavily on me when I’m dealing with an inexplicable high.

#4: It’s disruptive. When my blood sugar is high for a prolonged period of time, I can’t focus on anything else but that. I’ll do anything and everything I can to take my mind off it and just let my corrective insulin dose go to work, but I can’t help but worry. This can be especially disruptive when I’m trying to get work done at my desk job, or when I’m trying to enjoy a night out with friends. It can suck the joy out of any situation, and that can be incredibly disheartening.

#5: It doesn’t get along with exercise. High blood sugar is weird, because sometimes it cooperates with exercise, and other times it reacts very badly to it. I find that if I workout at 250 or below, my blood sugar responds wonderfully to the movement and it’ll drop my blood sugar down to a better level much faster than insulin. But if I dare to workout above 250, then things can go terribly wrong and my blood sugar will go up even more. I learned that lesson the hard way in college, when I went to a high-intensity spinning class…I was so nervous about going low in the middle of the class that I overcompensated with a pre-workout snack. So over the course of the class, my blood sugar shot up to 300 due to the strenuous exercise coupled with the extra carbs. Not fun.

#6: It makes my CGM wail. I appreciate the alarms on my CGM, but NOT when they go off over and over and OVER again. It feels like my CGM is judging me for being high and it couldn’t be more obnoxious…and I just want to throw my device across the room to get it to shut up.

#7: It prevents me from eating when I’m hungry. I don’t always want to eat when my blood sugar is high, but occasionally, high blood sugar coincides with mealtimes and I end up staring longingly at food while I wait for my blood sugar to stabilize at a better level. Depending on when the high happens and how badly I wanted to eat some food, I can get very hangry (angry AND hungry), which is never a good state of mind to be in.

#8: It’s stubborn. The worst part about high blood sugar is that sometimes, it feels like it takes FOREVER for it to come back down. During the waiting period, anxiety, irritation, and anger are all emotions that can manifest themselves within me. And it sucks. The mental games that high blood sugar can play with me are straight-up cruel, and since a high can be so damn stubbornly slow to respond to insulin, it makes it that much harder to handle…which is why, I can say with 100% certainty, that I hate high blood sugars with a bloody passion.

Stuck.

I’m stuck in a creative rut.

Lately, I just can’t seem to come up with fresh ideas for the blog. The desire to write is there, for sure, but the ability to compose engaging content is definitely not.

Does this have anything to do with the bout of burnout that I mentioned I’m currently experiencing?

I don’t think so.

When it comes to blogging, lately, I’m as stuck as this sticky note (so no fear, y’all – it’s not permanent).

I’ve gone through burnout periods before in which diabetes was the last thing I wanted to talk about, and I can recognize that this isn’t one of those times. In fact, this “stuck” feeling with my blog is rather inconvenient, because I count on my ability to come up with new posts to help me sort through some of the emotions associated with diabetes…ah well, such is life.

Anyways, I’m asking you, my lovely reader, to bear with me for a bit. I promise new material is on the way. In the meantime, please don’t be deterred if you see me republishing old blog posts. I’m quite selective in choosing which blog posts to share again, so rest assured that I’m doing my best to re-up pieces that I think you’ll care about. Thank you, as always, for stopping by and checking out the blog – I’m infinitely grateful for your support.

Do You Know About Monogenic Diabetes?

This post was originally published on October 28, 2019 here on Hugging the Cactus. I decided to share it again today because I think it’s important to raise awareness that there are more than two types of diabetes. As I reread it, I realized that even someone like me, a person who has diabetes, still has a long way to go when it comes to understanding how each type differs from one another. Read on to learn more…

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

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.

Just how many types of diabetes are on the spectrum

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: