Constantly Learning

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As I approach my 25th diabetes diagnosis anniversary (coming up this Christmas Eve), I marvel over how much I continue to constantly learn about my chronic condition.

You might think that I should be an expert after all this time, but that’s definitely not true. Sure, there are many predictable aspects about diabetes by this stage in the game. I’ve learned how to read my body’s signals. I’ve got a good grip on the mundane parts of diabetes management (e.g., changing my sites, reacting and treating various blood sugar levels, exercising with diabetes without wild blood sugar oscillations, and so forth). I know quite a bit about diabetes technology, even the kinds that I’ve never used before (and I attribute much of this knowledge to my friends and coworkers with diabetes, as well as the fact that I have an inside scoop on a lot of this stuff because I work in the diabetes sector).

But this doesn’t mean I’ve learned all there is to know about diabetes, the terminology that defines it, the research that is being conducted about it, or the innovations that are consistently occurring when it comes to technologies and therapies.

Little “cartoon me” likes to learn best with a book in one hand and coffee in another – hmm, maybe ACTUAL me should adopt this strategy!

A good example of this? I heard the acronym “FNIR” for the first time the other day when I was at work. A clinician was breaking it down as standing for “flat, narrow, and in range”, which is a pattern that can be visible on a CGM device that indicates tight control over blood sugar levels. My mind was kind of blown when I heard this; while the concept itself isn’t revolutionary, I had no idea that doctors had actually defined the phenomenon. This might seem like an insignificant example about learning something new; but on the contrary, it’s major to me because it’s something I hope to achieve on a daily basis (literally) – I just didn’t have the words myself for it. Now that I know it, I’d like to be able to use it during my upcoming endocrinology appointment as a tool to describe to my doctor that I want her help getting an FNIR graph more often.

Constantly learning can be tiresome at times, but it just goes to show that it’s good for me because all roads point down a better understanding of my diabetes – something that I will always want and always shoot for.

Camping: A Metaphor for Diabetes

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I was supposed to spend the first weekend of October camping (and merrily attending the local renaissance fair), but Mother Nature had different plans for me and my crew.

The first night went without a hitch – we’d arrived at our campsite early in the evening and had just enough time to set up our tent before darkness fell. By that time, we were able to get a campfire roaring and cook up some dinner that we enjoyed with beer. After plenty of conversation and laughs, everyone settled in their respective tents for the night and we let the sounds of the great outdoors lull us all to sleep.

The next morning was drastically different as the sound that woke me was the furious pounding of rain against our tent roof.

I wasn’t worried, though – surely the rain wouldn’t deter us from going to the fair. Maybe we’d drive there instead of walking there as we originally planned, but no big deal. I’d be gobbling up a giant turkey leg in no time!

Our campsite on night 1, looking deceptively idyllic.

But I was wrong. As I slowly grew more awake and alert, I decided to check the weather forecast as well as fair hours on my phone. The moment I saw that 1) rain was forecasted to fall at a ferocious pace all day long, and 2) the fair had announced on their website that they’d be closed for the day in order to better protect their employees from the remnants of Hurricane Ian that were striking the south shore of my state.

I couldn’t help but laugh. I nudged my partner (who was still somehow slumbering despite the deafening sound of the rain) and told him what was going on. We figured our options were either stick around and make the most of camping in the rain, and try to get to the fair the next day, or cut our losses by packing up and heading home. After a quick consultation with the rest of our group, it was clear that the latter option was more favorable to all.

So instead of frolicking around the fair in my carefully curated garb on Saturday morning, I was donning a giant red poncho as I helped disassemble our campsite in pouring rain. As I did what I could to shield our belongings from getting completely wet, I couldn’t help but think that this camping trip was becoming a bit of a metaphor for diabetes. In life with diabetes, I spend so much time planning for any case scenario to crop up at any time. And yet, diabetes still manages to throw curveballs in my way that require me to adapt quickly. Diabetes doesn’t care about how much preparation I put into something or that it’s an inconvenient time for it to start acting up – that’s just the nature of diabetes, and…well, the nature of this trip (literally and figuratively).

Ultimately, we regrouped from our change in plans by getting everything packed up in just under an hour, then heading over to IHOP to at least have a hot meal in a dry location together before we all left for home. And even though we would’ve preferred to spend our day at the fair, I’ve got to say, pancakes do help make many situations better – including this one.

Hugging the Cactus Turns 5!

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Yesterday, October 4, 2022, marked this blog’s fifth birthday.

How wild – five whole years of writing on this blog, connecting with the diabetes community at large, and gaining invaluable insights from fellow people living with diabetes.

Proudly donning my cactus cap and diabetes devices.

It’s a humbling experience. Any time someone tells me that they’ve read my blog, I’m truly honored that they’ve taken the time to check out my little passion project. And when someone visiting this site turns into a neat opportunity, such as appearing on a podcast, I’m beyond thrilled and appreciative that I get to use other media to reach out to our community.

When I think about where I was five years ago, I marvel over how much has changed not just for me, but for the world. We’ve experienced a global pandemic. We’ve undergone times of enormous celebration, as well as those of great contention. It’s kind of an imperfect metaphor for what it’s like to live with diabetes – it’s filled with ups and downs, triumphs and tribulation – and it takes strength, determination, and resilience to get through it all.

My plan today is to quietly celebrate that, as I reflect on my blog’s birthday as well as the true privilege I have to be able to work professionally within the diabetes space. I am proud of Hugging the Cactus. I am proud of the nonprofit I work for, which has recently experienced its own rebirth into The Diabetes Link. I am proud of all the people with diabetes in my life who live courageously and healthily with diabetes.

And I’m proud of myself for my blog’s milestone, as well as my nearly 25 years of life with diabetes.

Imaginary Beeps

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While busy at work one afternoon, I was listening to a Spotify playlist (as I often do), when I could’ve sworn I heard my Omnipod beeping to alert me to a failure.

Oh noooo…I thought. I remember sitting in my chair, with my head cocked and music blaring, as I tried to confirm that the beep was indeed emitting from my pod.

I was so certain that my pod was failing that it didn’t even cross my mind (at least initially) that it could’ve been my music playing a little too loudly.

And then I realized…it wasn’t my pod after all. It was the song that I’d been listening to. Roughly 2:45 into the song “Honestly” by Cartel, the music rose to such a crescendo that I could’ve sworn that it was my pod failing, but nope, it was just the pitch of the sound emitting from my speakers.

What a relief! But also a stark reminder that this phenomenon occurs on the regular. I mistake beeps from standard household appliances, alarm clocks, television commercials, and the outside world in general for Omnipod beeps. And I’m struck by it every single time.

The sounds of diabetes, just like diabetes itself, are just something I’ve come to accept – in the many unique forms they appear in.

Pumpkin Spice: A Very Nice Diabetes Treat

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This post is adapted from something I wrote and published on Hugging the Cactus on October 1, 2018. I decided to revisit it as a reminder of the many ways pumpkin spice can be enjoyed this time of year that won’t wind up making my blood sugar spike!

Since pumpkin spice manifests itself in many carb-laden treats this time of year, you might be wondering exactly how I can get away with enjoying a mass quantity of the stuff. And no, my method doesn’t involve dosing tons of insulin so I can down endless amounts of pumpkin spice M&Ms, ice cream, Oreos, yogurt, muffins, or any other kind of pumpkin-spicy product you can imagine (including the dearly beloved pumpkin spice latte).

I love a pumpkin spice latte, but I don’t love what it does to my blood sugars…so I find a way to enjoy the flavor that’s carb-free.

It’s much simpler than that – all that I do is make it my mission each year, right around mid-August, to find as many carb-free or low-carb pumpkin spice products as possible, buy them, and revel in them for the following three months. I’ve been a bit behind this year, but I’m stoked to stock up on favorites from the last few years which includes… gum, tea, coffee, butter (yes, pumpkin spice BUTTER), peanut butter (with pumpkin spice literally swirled in it), English muffins…the list can go on and on, and it does, considering that the gamut of pumpkin spice offerings only increases year after year.

I’ve hunted down foods that have both pumpkin spice and a lower carb count, like Halo Top Pumpkin Pie ice cream or FiberOne bars (ugh, they’re so good it’s not fair). I’ve even mixed it up by combining pumpkin spice with some more manageable carbs, such as plain oatmeal. I just can’t get enough, especially since this is a seasonal offering that plays pretty nicely with my diabetes.

The Numbers of My Diabetes

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I studied English in college and I’ve built a career around writing and editing; plus, I run this blog…so I’d say it’s a little more than obvious that I am a words person.

What might be less obvious is that I am not a numbers person

And yet, I was bestowed with a diabetes diagnosis early in life, so that’s forced me to become a numbers person.

Very reluctantly.

Numbers…the necessary bane of my existence.

Of course I’ve got a chronic condition that is centered around math – so much damn math. It’s a lot better now, with technology advancements, than it used to be back in the day. I definitely don’t miss having to take a calculator out at mealtimes to add up all my carbohydrates and then dividing that number by my insulin-to-carb ratio.

But still, there’s plenty of subtle calculations that I must perform on a daily basis. These include:

  • Number of hours it’s been since my last bolus
  • Number of days I have left on a CGM sensor or pod
  • Number of units of insulin I should fill my pods with
  • Number of carbs I need to consume to fix a low blood sugar
  • Number of carbs in every meal I consume (yes, I still have to figure this out on my own – I can’t wait ’til technology can do this for me)
  • Number of supplies I have left
  • Number of visits to the doctor each year
  • Number of dollar bills I spend on supplies
  • Number of hours, minutes, and seconds I spare thinking about the next diabetes decision I have to make
  • Number of blog posts I’ve written about diabetes (this happens to be post #706 on this blog alone…wow!)

Those are just some examples of the mathematics behind diabetes. Some are basic numbers and data points, whereas others are based upon true arithmetic or equations. Nonetheless, what they all have in common is that amount of space they take up in my mind, which is to say…it’s a lot.

No wonder I’m not overly fond of anything pertaining to numerals.

High…Why?!

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Ugh, high again? Why does this keep happening?!

I mused to myself as my Dexcom vibrated incessantly, alerting me to the state of my blood sugar.

I’ve actually been wondering that very thought (and cursing out loud about it) more often than I’d like in recent weeks.

High blood sugar = the diabetes version of kryptonite, at least for me.

It’s been about 3 weeks since I started the Omnipod 5, and I guess my high hopes for the system to revolutionize my blood sugars came to be a little too literally. The 5 has been a godsend in terms of 1) helping me sleep through the night as I’ve only woken up once this month to correct a low OR high blood sugar and 2) catching lows before they happen or before I have to eat something in order to bring my BG back up.

But what the 5 and I are struggling with is the exact opposite of the latter, and that is catching highs before they happen – and then reacting accordingly. I’ve found that I’m dealing with more rapid and prolonged spikes than I thought I’d be. I’m doing what I can to proactively treat them myself by bolusing when they occur, but for some reason, it seems to take a solid 2-3 hours for my blood sugar to come back down nearly every time.

After consulting with some of my diabetes pals about this, and giving it some further contemplation, I’ve got a 3-step action plan to combat these highs:

  1. Give my Omnipod 5 more time to learn my body’s patterns – I’ve heard across the community that it can take several weeks for this to happen most effectively, so I need to try to be patient and wait for the results to occur.
  2. Continue to correct for highs when they occur, and do so swiftly. One of my colleagues said this helped a lot in the beginning, so I will continue to monitor for highs diligently and not be shy about bolusing for them (as long as I’m not stacking insulin too much).
  3. Pre-bolus, pre-bolus, and pre-bolus some more. I’ve always been a believer in the power of the pre-bolus, especially since I know that Humalog typically takes 60-75 minutes to start working in my body. I’m going to build pre-bolusing into my schedule and try to do it at least 30 minutes before I actually eat each of my meals, and we’ll see where that takes me.

Hopefully, this plan of mine coupled with my automated insulin delivery system will nip these high episodes in the bud before long. I can’t wait for “why, high” to become “smooth sailing” and translate into beautiful, level Dexcom graphs!

A Balancing Act: All Diabetes, All the Time

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Sometimes, I feel like I don’t ever get a break from diabetes.

Obviously, the nature of diabetes itself is 24/7/365 – it doesn’t have an on/off button and requires constant monitoring.

But there’s also the fact that my full-time job is working for a diabetes non-profit.

Also also the fact that I have two very near and dear family members (and many friends, to boot) who also live with diabetes; naturally, it comes up in conversation all the time.

Also also also! I have this little blog you may have heard of called Hugging the Cactus…where I write about my life with diabetes a couple days each week.

So not only am I living with diabetes, but I’ve also forged a career in the diabetes sector, a hobby writing about it, and countless relationships built from shared experiences with it.

And it’s a lot.

Dealing with diabetes around the clock in multiple scenarios and settings can be exhausting…to say the least.

Since there is so much diabetes so much of the time, it’s incredibly important to find a balance…a way to shut my brain off from it all, even if it’s only for short periods of time. I’ve had mixed success accomplishing this in the last year. Making plans with family and friends, joining a volleyball team, immersing myself in RP games, playing with my dog, and doing small acts of self-care have helped, but it’s not always enough.

I’m recognizing this as I write this blog post, and taking a moment to appreciate the mental time and energy that goes into maintaining this balancing act. Just as it’s easier to do on some days, it’s also totally much harder on others – and that’s valid. And it’s a gentle reminder to anyone else who can relate to this that your feelings on it are legitimate, too, and that you aren’t alone.

4 Ways Diabetes Motivates Me

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This blog post was originally published on Hugging the Cactus on March 19, 2021. I’m sharing it again today because it’s important for me to remember that on the days when diabetes feels so utterly defeating, it can also be incredibly motivating. Read on to learn how…

Life with diabetes can be inconvenient, unpredictable, and downright frustrating. But it’s not all bad. In fact, after living with it for more than 23 years now, I’ve actually identified a few different ways in which it helps motivate me. And what, exactly, are those ways? Well…

#1: It’s constantly challenging me to strive for the better: Better “control” over my blood sugar levels, better management of my diet and exercise regimen, and better care of my entire body, in general. While it involves a lot of work, it’s extremely motivating because I know that anything I do for the better of my diabetes and my body now will pay dividends in the future.

#2: Diabetes encourages me to ask questions. I think that my diabetes is the reason why I’ve learned to be curious. It pushes me to want to know the who, what, when, where, why, and how of various scenarios, both relating to and not relating to diabetes. It’s natural for human beings to be inquisitive, but they don’t always do something to pursue answers to questions. My diabetes pushes me to do that, with varying degrees of success, and that’s something I’m grateful for.

Today on the blog: Find out how I get motivation from my #diabetes in my new post - visit #HuggingTheCactus to read it. #t1d #type1diabetes #diablog
How does diabetes motivate you?

#3: It pushes me to prove people wrong. There’s so much stigma surrounding diabetes…”You can’t eat that! You can’t do this! You can’t do that!” are exclamations that I’ve heard my entire life from different people. Rather than nodding and smiling politely at these poor, misinformed individuals, I strive to show them exactly why they’re wrong. Whether it’s explaining the facts or going out and doing the very thing they said I wouldn’t be able to do because of diabetes, it’s empowering for me to smash down diabetes misconceptions.

#4: Diabetes inspires me to seek more out of life. This goes hand-in-hand with point number 3, but it counts as a separate notion because this is all about how I view my life with diabetes. I didn’t fully accept my diabetes until I was a teenager. That acceptance represented a turning point for me during which I realized that just because I was dealt this card in life, it doesn’t mean that it should stop me from accomplishing my hopes and dreams. Over the years, my diabetes has made me want more: opportunities, experiences, relationships…you name it and I’m hungry for it.

Sure, diabetes can be my biggest headache…but it can also be my greatest motivator, and I think it’s important for me to embrace the beauty of that.

I Care About Eye Care

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Like most people with diabetes, I see an ophthalmologist (essentially an eye health specialist) once a year. This is because diabetes can affect vision and overall eye wellness, so an ophthalmologist will look for things like cataracts, glaucoma, and macular degeneration within my eyes to make sure they’re healthy.

These appointments have all followed a similar pattern for me in the last couple dozen years that I’ve had diabetes. I’m brought into an exam room, my vision is tested with an eye chart, and then my eyes are dilated and examined with extremely bright lights. And I’ve been very fortunate to hear the same verdict from the ophthalmologist year after year: There’s no evidence of diabetes in my eyes, which translates to my eyes look healthy and normal.

This lack of diagnosis has always reassured me, and this year it was no exception. The only thing that actually changed for me was that it dawned on me that this appointment really means a lot to me. It was relatively quick, completely painless, and, dare I say, pleasant because of my doctor’s deep personal connection to diabetes (her son is around my age and also has T1D). She truly gets what it’s like, and didn’t make a big deal whatsoever when my Dexcom interrupted our appointment with a high alarm.

My annual appointment with my ophthalmologist is like performing a maintenance check on a car – it’s my chance to make sure everything is operating smoothly.

I’ve come to realize that even though it’s a blip on the radar compared to all the other doctors and healthcare specialists I see throughout the year, it’s still significant to me because I don’t take my vision for granted. Sure, I can’t see much without the aid of my contacts or glasses, but I can still see without pain, blurriness, or any other general eye discomfort. That makes me lucky and also motivates me to continue doing all the right things for my eyes, such as replacing my contact lenses on schedule and taking care to use high-quality cosmetic products. I can’t say that those two factors alone have contributed to my eye health (in fact, I can say with certainty that it’s my diabetes management more than anything else), but even so…I recognize that eye health is not to be taken lightly.

I care about eye care, and I definitely see the connection that doing my best for my ‘betes benefits it, my eyes, and well…all of me.