My Experience Attending the ADCES All-State Meeting as a Panelist

Talking to one doctor or healthcare provider can be intimidating. It’s not exactly my idea of “fun” to sit in a stuffy room with a medical professional and discuss various health concerns. But what about talking to dozens of them, all at the same time? Forget about fun, it sounds like downright torture.

Fortunately, “torture” is not the word I would use to describe my experience speaking as a panelist at the ADCES Massachusetts All-State meeting earlier this month.

I really enjoyed the opportunity to speak on this panel.

Rather, words like “empowering”, “therapeutic”, and “reflective” sum up how I felt during the event, and I was pleasantly surprised by that outcome. After all, I had no idea what to expect – I was there sort of on behalf of my job, but also as a favor to a former colleague who was leading a session about navigating young adulthood and diabetes; in particular, what it’s been like to transition into the “new normal” of working from home, relying on telehealth visits, and dealing with record-high levels of mental health crises among the young adult population as a result of the pandemic in the last couple of years.

You know, just the type of light and fluffy stuff people love to spend Saturday afternoons discussing, right? (Yes, that was a sarcastic statement.)

Despite the heaviness of the subject, it was a really positive experience for me because I was able to be completely open about my experiences in a room of surprisingly engaged diabetes healthcare professionals. I say “surprisingly” only because I was speaking to a room of complete strangers who knew nothing about me, but that turned out to be the beauty of the entire discussion – I was a neutral third party whose experience they could learn from and take with them into future appointments with T1D patients my age. Similarly, I was able to draw from my own experiences with healthcare professionals in the last couple of years and elaborate on what’s worked (and what hasn’t), which was healing for me to talk about because as I’ve written about here in the past, I’ve had some less than satisfactory encounters with my doctors since the onset of the pandemic. It was also nice to feel like I was really being heard by these individuals, who reacted to my stories with empathy, kindness, and concern.

All in all, I’m pleased that this speaking opportunity went so well, and I’m grateful that I will have additional chances to be at events like this in the future, thanks to my job and diabetes community connections.

What Every Parent of a T1D Child Needs to Know

This was originally published on Hugging the Cactus on August 28, 2019. I’m sharing it again today because due to various events in my life lately, I have a whole new appreciation for just how challenging it can be to be a parent to someone with diabetes. It’s far from easy and I give all the credit in the world to parents of children with diabetes. But I also think it’s worth reiterating that despite all the (valid) fears and concerns that parents have about their T1D children, it’s also important to have faith in knowing that it will all be okay. Read on for more…

I may not be the parent of a T1D child, but I am the T1D child of my parents. So I have a unique perspective on the concerns and fears that a parent of a T1D child might have.

I also have a little more insight on these concerns and fears through my interactions with many parents of T1D children over the years. These parents had children of all ages: from toddler to teenager. Their children ranged from newly diagnosed with diabetes to multi-year veteran of T1D. Despite these differences in ages and years with diabetes, they’ve all had something major in common: An intense fear over the day when their child would make the transition from living under their roof to living independently, on a college campus or in another living situation.

The bottom line? It will be okay.

The mere thought of their beloved son or daughter going through this was enough to make some of these parents on the verge of tears. It was heartbreaking, but also somewhat confusing to me. I understand the unconditional love that parents have for their children, so naturally, they were terrified at the thought of their children feeling alone as they made the transition to young adulthood, or frightened by the prospect of their children suddenly not wanting to take care of their diabetes anymore. But what I didn’t get was why they automatically assumed the worst.

What if their child thrived in this transition? What if their child found a wonderful group of people, such as the College Diabetes Network, that helped them through this period in life (like I did)? What if their child was ready to manage everything on his or her own? Certainly, it would be a source of pride for a parent to witness his or her child do well and embrace independence.

On the flip side, if a young adult with T1D struggled to make the transition smooth…well, I told many of these parents that it’s okay. Because I struggled. A lot, actually. But I made it through. The longer I spent away from home, the more I realized that it was time for me to hold myself accountable in terms of diabetes management. There was never really any big “aha” moment for me. It was more of a slow-and-steady recognition of the fact that the shitty blood sugars I was constantly dealing with could only be changed by me, and me alone. So I took the steps I needed to; naturally, with the support of my parents.

I guess that’s kind of the two-fold message I’m trying to convey here to worried parents of T1D children: 1) Have faith in your child’s ability to adapt to change, and 2) Never underestimate how your support, in any form, can mean the world to your child. Don’t be afraid to have conversations with him/her so you can get on the same page and understand how you’re both feeling about this new life stage. That way, you can find out exactly what kind of support you can offer to your child that he/she will find most helpful.

The bottom line: Parents with T1D children, it’ll be okay. Just like people with diabetes know they’re not alone in their struggle against it, you should also know that there are many other parents out there who probably feel the same as you.

In that way, we’re never truly alone when dealing with new challenges or changes in our lives. Once that’s realized, it becomes a million times easier to figure out the best way to tackle them with your support system by your side.

Unsteadily Stable

“Molly,

Your labs are stable. A1c is just slightly higher.”

This was the ultra-concise memo that my endocrinologist sent me post-appointment.

Nothing about this note was shocking, but somehow I’d deluded myself into thinking that my doctor’s analysis of my diabetes management in the last six months would be…I don’t know, a little more personal? Maybe contain congratulatory sentiments or words of encouragement?

Words of encouragement may have been more helpful in getting me to tip the scale and feel steadier about my diabetes management…

After all, I’d told her during our appointment that while I didn’t have any specific diabetes concerns to discuss, I did have a strong desire to improve my management. I know that I’m doing better than I was, say, at the age of 18 or 19, but as I grow older I become more acutely aware of the things that I could improve upon with my diabetes care. I acknowledge and accept that it’s up to me to be accountable for taking steps towards progress, yet I do rely on the input from my healthcare team in order to come up with realistic ways for me to make said progress. So naturally, I felt a slight tinge of disappointment when we discussed and agreed on a single, minor tweak to my basal and bolus settings before parting ways, with plans to see one another again in six months.

I couldn’t help but feel…that’s it? That’s all that I got out of this appointment? I suppose I’m feeling a bit jaded about it because it was my first time seeing my endocrinologist in about a year, since she had an extended leave of absence. In the time since I last saw her, I’d had a couple of appointments with the nurse practitioner who she allegedly works closely with, and I guess I had assumed that the NP would update my doctor on how I’m more determined than ever to take steps to achieve more time in range.

Now, I realize more than ever that I can only rely on myself to convey my thoughts and feelings about my diabetes to my healthcare team. Now, I realize that while my labs indicate my diabetes “stability”, my attitude towards my diabetes is the opposite.

I’m calling it…unsteadily stable. I’m doing fine with my diabetes, but I know that I am capable of doing better and feel like the path there will be a bumpy one.

Another way of putting it? I’m like one of those children’s roly-poly toys – I’m a little wobbly in terms of the goals I have for my diabetes management, but I certainly won’t let it cause me to fall down.

29 Feels Just Fine

Yesterday, I turned 29 years old. True to Hugging the Cactus tradition, I’m using today’s blog post as an opportunity to reflect on how I feel about this next year of my life.

29 feels just fine to me.

I’m feeling…just fine about 29. Before you think I’m just saying that because it rhymes, or because I’m not genuinely happy to be 29 (the rhyming is just a bonus and honestly, I’m happy to be any age because it means I’m living and that’s a wonderful thing), let me jump in and say it feels fine because…it just feels right for me, right here and right now. It’s not “just fine” in a sarcastic or curt way; rather, it’s “just fine” in the sense that it feels good and perfectly acceptable and something that I will embrace.

To tie it all back to diabetes, “good and perfectly acceptable and something that I will embrace” is kind of the attitude that I strive to maintain when it comes to how I feel about my diabetes. Of course, I have my days where everything is far from good, perfectly acceptable, or embrace-worthy. But generally speaking, I’ve worked hard to get to a place where I simply and peacefully coexist with my diabetes. I ride the waves of highs and lows and always find a way or means to overcome the unexpected ripples of randomness that my diabetes drifts my way.

So I’d like to carry that mindset into the last year of my 20s: a mindset in which I take comfort in knowing that I’m capable of riding the waves caused by diabetes, or anything else in my life, really. Arming myself with the knowledge that I grow through what I go through will help me thrive with diabetes and life, and it seems like an excellent nugget of wisdom to bring with me into year 29.

A Bit Bumpy

I spent way too long trying to come up with a good title for this blog post.

Let’s be real, here. It’s hard to think of compelling, descriptive titles that will make people want to read a piece of content. This post was particularly challenging for me because of the subject matter: bumps.

Before you jump to any conclusions, I’m not talking about baby bumps or any sort of metaphorical or literal bumps in the road. The bumps that I’m referring to are physical manifestations on my skin of my diabetes that I find unsightly, which is why I had a difficult time figuring out how to talk about them in a blog post.

I don’t understand why the bumps only appear on my thighs, but…c’est la vie.

Let me elaborate on the exact nature of these bumps. They only show up when I remove a pod that had been on my thigh. No other site experiences this blemish, and no other diabetes device (e.g., my CGM) causes a raised bump to appear on my skin’s surface. The bumps themselves are relatively small – they look a little bit like mosquito bites. You can always tell the exact location that the pod’s cannula was in because the skin looks slightly more irritated and raised there, whereas the skin around that site has a pink tinge to it. These bumps don’t hurt me, aren’t typically itchy, and usually fade in a week or so.

In the grand scheme of things, the bumps probably don’t sound like that big of a deal. But I can’t help but feel self-conscious about them because to me, they’re stark reminders of the physical marks that diabetes leaves on my body. I made peace with having to wear two different gadgets (my pod and my CGM) years ago and having those stuck on my being, but these ugly little bumps? I didn’t exactly consent to having those on my body, too.

I suppose I could solve the problem by avoiding using my thighs as sites for my pods, but to me, that’s just giving in to my diabetes and giving up an extra bit of real estate on my body that I need so I can properly rotate my pod and CGM sites. I’m a little too stubborn to just accept that I shouldn’t wear pods on my legs if I want the bumps to stop appearing. That doesn’t mean that I have to be okay with them, though.

Sharing about the bumps in a blog post is me being vulnerable about a component of my diabetes that embarrasses me. I’m hoping that it results in that shame evolving into a sense of acceptance, or maybe even pride, over my bumps. Because even though they’re far from cute, they do add visibility to my diabetes and represent the strength that my body and mind have developed in order to coexist with it on a daily basis.

Maybe writing this post is the launching point for me to think of these bumps not as blemishes, but as diabadass beauty marks, instead.

The Best Kind of Diabetes Conversation

In my humble opinion (and experience), the best kind of diabetes conversation happens when it’s least expected among a group of people who are willing to listen and learn about it.

I was fortunate enough to have this exact type of conversation with my newly formed volleyball team after our first match of the season. (Side note that until then, I’d never played volleyball in my entire life. I was a ball of nerves the whole time, but I think that joining the league will have a positive impact on my mental health, social life, and diabetes, so I’m excited to see where the season takes me.) We were gathered around the table in a bar, enjoying a pitcher of beer and learning more about one another, when diabetes entered the conversation – as it almost always does, eventually, when I meet new people.

It’s not always easy to have a conversation with new people about diabetes.

We probably spent less than 10 minutes on the subject of diabetes, but the whole time we did talk about, I felt extremely thankful to be surrounded by people who asked thoughtful questions, demonstrated curiosity to learn more, and made a pointed effort to ensure my comfort throughout the whole conversation. The energy that the group was emitting made me feel good as I shared my experiences and showed them my Dexcom and Omnipod devices, the latter of which isn’t always easy to do around new people because I can be a little self-conscious of how they appear on my body. But it felt natural to be open and upfront about all things diabetes, as I’ve experienced it, because everyone genuinely cared to learn more.

That’s what made it such a lovely conversation; in turn, it will also serve as a great reminder to me that telling new people about diabetes doesn’t always have to be an intimidating or stressful ordeal.

A Tough Call: Replace or Keep a Half-Ripped Off Pod?

It was the perfect storm.

My Omnipod’s adhesive was damp from the shower. I was putting a pair of pants and not paying any mind to the pod I’d only been wearing for about 12 hours.

It’s no wonder that I brushed the fabric of my pants up against my pod in precisely the wrong way.

I heard the telltale sound of adhesive tearing off my skin and cursed before looking down to inspect the damage.

I expected to see a pod dangling on my leg by a thread, but instead I noticed that the adhesive around the cannula-end of the pod (the important end) still seemed totally stuck to my skin. It was the opposite end that was in trouble and definitely needed taping up if I hoped to save the pod.

So while I waited for my pod’s adhesive to completely dry from the shower so I could check it out further, I pondered: Do I run the risk of keeping this pod on, even though its security was significantly decreased? Or do I err on the side of caution and replace it, and enjoy the peace of mind that comes with a freshly applied pod?

Both options had pros and cons.

Spoiler alert: I decided to keep the pod on, but made sure it was as secure as it possibly could be by adding an overlay patch around it.

If I kept the pod on, my blood sugars might start to run high because I couldn’t say with 100% certainty that the cannula was still inserted in my skin. It looked like it could be, but the sound of half the adhesive ripping off made me suspicious. But if I replaced the pod, I would be wasting all the insulin I had just put into it the night before, which was a thought that was difficult for me to stomach.

I decided that the more favorable option to me was keeping the pod on, so once I knew it was dry, I added a little extra security by applying a PodPal (an Omnipod-shaped adhesive overlay meant to reinforce a pod’s stickiness) around it. As of this writing, only time will tell whether this was the right call to make, but my point in sharing this story is that this is an example of just one of the many judgment calls that people with diabetes have to make on pretty much a daily basis. This single decision took up mental energy and time that I would’ve rather used at work, or for chores around my house, or for just about anything else – but instead, diabetes had to be at the forefront of my thoughts and actions because it often demands just that much attention.

That’s why it’s kind of staggering to know that people with diabetes make around 180 decisions per day...with that in mind, there’s no doubting that diabetes is a condition defined by choices made. No matter how big or small – even as tiny as choosing whether or not to replace a pod – they all add up together to determine long-term health outcomes, and that in itself is a very big deal.

5 Reasons Why I Took a Break from Continuous Glucose Monitoring

today because it’s a great reminder that diabetes isn’t a static condition – what works for a person with diabetes one day might not work the same way the next. So when I decided to take a Dexcom break, it was a much-needed change in my diabetes care routine that worked wonders for my mental and physical health. I just might take another one after reading this post again…read on for the full story.

I’ve decided to take a break from continuous glucose monitoring. This means that for an undefined period of time – maybe 3-4 days, a week, or a few weeks – I’m not going to wear my Dexcom G6 CGM.

Initially, I wanted to give myself a break because I was just burnt out from wearing it all the time and feeling so dependent on it. But as I started thinking about more, I realized that there were some other really great reasons for me to take a break from my CGM:

1 – I wanted to wear one less device. It can be tough to wear two medical devices 24/7. Sometimes I get super self-conscious of them. Other times they just aren’t comfortable to wear, such as when I roll over one the wrong way when I’m sleeping at night. So it’s nice to feel a little more free with one less device stuck to my body at all times.

2 – I was sick of the constant data feed. All those alarms going off whenever I cross my high or low threshold are straight up annoying!!! I know I could just turn them off on my CGM receivers, but the point of them (for me) is to try to maintain as tight of a control on my numbers as possible. But now that I’m intentionally not wearing my CGM, I’m realizing how much I appreciate the reprieve from all that buzzing and beeping. There’s lots of reasons to take a break from continuous glucose monitoring, but sometimes one is enough.

Taking a break from my Dexcom was a much-needed change in my daily diabetes care routine.

3 – I have some new blood glucose meters to try. The only way that I can really put my new meters to the *test* (lol) is to use them – and goodness knows that I have very little desire to do manual finger stick checks when I’m wearing my CGM.

4 – I’d like to hold myself more accountable. I rely on my Dexcom heavily at all times. I look to it before I start exercising, before I eat something, before I do anything, really. I bolus using the data it provides and trust it implicitly. But I’ve recognized that by developing this habit, I’ve become lazy. I don’t measure out food as much because I figure that if I bolus too much or too little for it, I can just watch what my Dexcom tells me and treat from there. It’s kinda sloppy, in my humble opinion, so I’m trying to put more of the trust back in myself for my diabetes monitoring.

5 – I’m trying to reacquaint myself with my body’s cues. Before CGM technology, I was really good at recognizing high and low blood sugar symptoms…but then I started using a CGM and found myself reacting to highs and lows (e.g., treating them prematurely), even if I didn’t feel those high/low symptoms. So I want to retrain myself so I can make sure I never lose that ability, because I think it’s important to know exactly how my body alerts me to various blood sugars, rather than depending solely on a piece of technology to do it for me.

Tricky Timing and the Power of the Pre-Bolus

Pre-bolusing: It’s the term that describes taking insulin before eating food. The “before” part in the definition is key, because the amount of time that “before” is can and will vary among people with diabetes. It depends on a few factors, including the amount and type of insulin being used, the amount and type of food to be consumed, current blood sugar levels, and so forth.

It’s one of those things that’s tricky to nail the timing of, but boy, when it works it’s so worth it.

Pre-bolusing works well, but only when the timing of it is perfect.

I have two examples to complement that belief, one in which pre-bolusing almost lead to a disastrous outcome and the other in which everything turned out ideally. I’ll start with the more chaotic scenario first.

In this situation, my boyfriend and I spent the night in New Hampshire to attend a friends’ wedding and had a pretty late night, which meant we slept in a little later than we had intended the next day…actually, a lot later. We only had about 20 minutes to race around our room, pack up our belongings, and get ourselves looking presentable before we had to check out of the hotel. Luckily, our scrambling paid off and we made it out in time, but sleeping in cost us the opportunity to enjoy a complimentary hotel breakfast. We decided that it made sense to stop for brunch on our drive back home to Massachusetts, so we Googled a diner that was on our route home and stopped there for a meal.

When we got there, the restaurant was pretty crowded, but we were seated and able to place our brunch orders almost immediately – a good sign. I assumed this meant we wouldn’t have to wait more than 20 minutes or so (that feels like a restaurant standard) for our food to be ready, so I went ahead and pre-bolused my mealtime insulin. After all, I’d ordered a hearty omelet that would come with breakfast potatoes and toast, so I wanted to be proactive about avoiding high blood sugar and get my insulin in system sooner rather than later.

Unfortunately for me, our food ended up coming out later rather than sooner. In fact, we waited nearly 45 minutes for our dishes to finally come out. In that period of waiting, I was getting more and more anxious about my decision to pre-bolus with each minute that passed without food in front of me. By the 30-minute mark, I was close to full-on panic. Even though my Dexcom wasn’t indicating that my blood sugar was low (it held out steady the whole time), I was worried that the system delay in reporting my blood sugars would fail to catch a serious low in a timely manner. I told my boyfriend what was going on, and without hesitating he went to his car to grab some packs of honey that he’d stored in his glove compartment in case of emergency. We talked it over, and decided that it was probably best for me to consume at least one pack of honey because we couldn’t possibly know when our food was going to come out, and at this rate, we wanted to play it safe rather than be sorry. That didn’t exactly lessen the sorrow and stupidity that I felt for taking a pre-bolus (even though I couldn’t have possibly known that our food would be so delayed, I still felt badly about the whole thing), but it was what it was. And ultimately, I felt like I paid the price several hours later, when I was dealing with the very same high blood sugars that I’d hoped my pre-bolus would prevent. So much for making the pre-bolus grade that time…

But that doesn’t mean pre-bolusing always fails! This brings me to my other example. My mom and I had a nice lunch together last week. Before we left to go to the restaurant, I noticed my blood sugar was a little high. I decided to give myself a correction dose, plus one extra unit of insulin, because I knew we’d be eating foods that aren’t typical for me to consume at lunchtime that could result in highs later in the day. So again, I was aiming to be proactive and prevent prolonged high blood sugar.

And this time, the strategy worked great! At the restaurant, I stacked that pre-bolus with my actual meal bolus (not always a recommended tactic, but it was useful here) and rounded out my afternoon with a blood sugar in the 120s – a win in my book. Thanks to my pre-bolus, I didn’t experience any pesky blood sugar spikes and still landed in range, which in turn showcases the power of the pre-bolus perfectly.

So just like anything in life with diabetes, when pre-bolusing works, it’s wonderful…but it definitely requires a little finesse to learn exactly when/how/where to use it.

T1D Tests More Than Just Blood Sugar…

Turns out, living with type 1 diabetes means that I’m testing a whole lot more than just my blood sugar levels…

…I’m testing my memory, too – and rather frequently.

As a person with T1D, it’s on me to remember to do basic things like bolus for meals, be prepared with back-up supplies at all times, get prescriptions filled before I run out of anything, and so much more. More often than not, I pass these memory tests.

But naturally, I’m bound to fail one every now and then.

Case in point: I forgot where I left my PDM the other day. I had prepared my dinner and went to take a bolus for it when I realized that I couldn’t remember when or where I last saw it.

When the “Find my PDM” feature fails, there’s nothing to fall back on other than memory…and maybe a bit of luck, as well.

It was an infuriating scenario. I knew it was somewhere in my home. I hadn’t left the house all day, other than to take my dog outside to do her business. I spent the better part of a half hour wandering up and down the stairs, searching with an increased sense of franticness, for my PDM. The urgency to locate it only heightened when I tried to use the “Find my PDM” feature on the Omnipod Display app and it wouldn’t work. That was a first – up until this day, I’d always been able to use it to track down my PDM when I’d misplaced it. It showed no indication that it was going to suddenly start working again any time soon, so I gave up and was forced to retrace my steps in order to find my PDM…which was going to be difficult considering in the middle of my search, my Dexcom went off, alerting me to an impending low blood sugar.

Think, think, think…I could practically feel the wheels turning in my head as I tried to recall where I last saw my PDM. I’d bolused for lunch earlier in the day, most definitely. That much I knew. I had eaten lunch downstairs, so I surmised that I brought my PDM upstairs with me when I was done so I could have it nearby as I continued on with my workday.

I looked high and low, all around my bedroom, without success. That’s when it dawned on me that there was a slim chance that my PDM fell outside of my pocket when I took my dog out just before I’d made my dinner. So I ventured outside, sweat starting to bead on my forehead as I grew shakier from my low blood sugar. I scoured the parking lot and the lawn for my PDM and no dice. That was when I decided to head back inside, drink a juice box, and take a moment to really contemplate the time and place I last saw my PDM.

That’s when it hit me – it had to be on my bedroom floor, next to my bed, because I suddenly remembered how it had accidentally slipped off my bed when I’d placed it there after lunch! I raced back upstairs, feeling triumphant and relieved when I saw the PDM in that precise spot and could confirm that my memory had finally served me correctly.

Now, this might sound like some silly, random anecdote about how I had a forgetful moment. But to me, it actually demonstrates just how much a person with diabetes needs to remember to do on a daily basis. It’s so much more than the finger stick pokes or insulin injections – it’s a lot of accountability. It shows that diabetes tests a whole heck of a lot more than blood sugar…it tests patience, responsibility, and yes, in this particular situation, memory. This is why I think people with diabetes deserve recognition for dealing with these daily, innumerable tests as gracefully as we can.