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.
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.
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.
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:
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.
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).
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!
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.
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.
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 thebetter: 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.
#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.
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.
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.
I got a massage last night: my first in roughly two and a half years (thanks, global pandemic).
As I drifted away into a state of deep relaxation, one thought occurred to me about how something “special” and “extra” like a massage is actually one of the extremely rare times in which I stop thinking about my diabetes for awhile. Do I need a massage like I need insulin? No, definitely not. But do I need an opportunity to unwind every so often? Does my body and mind benefit from massage therapy? Yes, and heck yes.
This is why I think self-care is a critical aspect of diabetes management, and unfortunately, one that I do not make enough time for – and I know there are plenty of other folks out there who can relate.
In recognizing this, I’m going to start making time for little self-care activities for myself throughout the week. Sure, I can’t afford to get a massage all the time (though I certainly wish I could), but I can absolutely provide myself with a spa-like atmosphere right at home with some calming music, essential oils, and a couple of store-bought facials. And I can take 2 minutes out of my day to use the nifty meditation feature on my Fitbit, which guides me through a breathing practice designed to settle the body and mind. Last but not least, I can continue to do better to make sleep priority number one. I’ve had far too many nights this summer in which I got fewer than 6 hours of sleep, and that just isn’t sustainable for me or my diabetes.
I’m hoping that my Omnipod 5 will be conducive to me taking some more time for self-care, you know, with it taking some of the heavy lifting out of the way by being an automated system. I figure that if my Dexcom can integrate so nicely with the system, then maybe personal relaxation time can also work its way in there – so every component of my diabetes care toolkit can work in harmony, allowing me to enjoy some peace, too.
As of this writing, I’ve been wearing my new Omnipod 5 pump for about 2 ½ days. I will be changing my first Omnipod 5 pod later this evening, but before then, I wanted to jot down my initial impressions of the system as a whole so far.
The PDM: A bit larger and more brick-like compared to my Dash PDM. Actually, the size is pretty on par with my iPhone. I like that the screen is larger and it seems more sensitive to touch than my Dash – all good things. Except I can’t figure out why it makes chiming sounds only sometimes after I enter my PIN! I’m sure I’ll learn the cause of that eventually…
The pod: Basically indistinguishable from my Dash pods – the only difference I’ve spotted (or rather heard) has to do with the mechanical ticking sound my pod makes when it’s delivering my basal insulin. The old pods had a set frequency, whereas the 5 pods seem to go “tick, tick, tick” in bursts of three or so. Not sure why, but I know I’m still getting my basal rate delivered, which is what counts.
The set-up: Inputting all of my settings into the 5 only took me about 15-20 minutes. It was so easy that it likely would’ve taken me less time if I wasn’t so thorough and careful about triple-checking my settings. I also think it was relatively seamless for me because I was already familiar with 90% of the PDM’s functionality – the only thing I had (and still have to) explore further is automated mode…see below.
Automated vs. manual modes: I can go back and forth between automated (insulin delivery is automatic and the system responds to highs and lows based on data it receives from my Dexcom) and manual (I have to make my own adjustments, just like I did with the older versions of Omnipod). This was a helpful feature for me because I inexplicably got scared of automated mode the first night I wore the pod. I didn’t know what to expect from it – should I trust it right away? Would I notice it working? What if it didn’t? Ultimately, I decided I wasn’t comfortable going to sleep in automated mode, so I kept manual mode on because I wanted to have more control. I waited until the following morning before I turned it on, and since then, I’ve been on automated mode and I’ve spent a solid chunk of my time in range. A few highs here and there, but all my lows seem to be detected before I drop too much, which is just awesome.
Dexcom integration: Similar to the overall set-up of the system, it was extremely easy to get my Dexcom synced up with my Omnipod. All I had to do was enter the 6-character transmitter ID into my PDM and give it a few moments to pick up my Dexcom’s signal. And that was it! I’m sure things will get a little more dicey on days that I have to do both a pod and CGM change (coincidentally, I’m going to do just that in a few hours for the first time…eek), but I do have confidence in my ability to time the changes well so I don’t go without automated mode or Dexcom data for too long.
Let’s talk about sleep: The indisputable best part of this system so far is that I’ve slept soundly the past 3 nights. No CGM alarms going off and waking me up, no frantic shoving of food in my mouth from my bed or late night bolus delivery. And best of all, no waking up in the morning out of range. Now it’s not like that before the 5, I was waking up every night to do something diabetes-related, nor was I starting off each day with a high or low. But I was getting to a point where these things did happen at least on a weekly basis, and naturally, I was getting tired of it. So while I’m acutely aware that I need more time to get to know the system (and it also needs to figure me out), I have hope that it will help me make a major improvement in my diabetes care and management.
All in all, it’s been a relatively smooth start for me and my Omnipod 5. I totally expect some bumps down the road, because that’s normal when starting up any new piece of diabetes technology. But for now, I remain grateful for a comfortable transition to the system.
After the insanity of the entire month of August (I’ve had LOTS going on professionally and personal), I can’t believe that I actually escape for a full week earlier in the month. But I did, and I’m so very thankful that I had the opportunity to soak up some sun with my boyfriend and dog at the vacation spot I’ve visited annually most of my life.
Of course, they weren’t my only travel companions – my diabetes tagged along too, just as it always does (oh, if only I could do something about that). And my diabetes proved to me, once again, that it dislikes disruptions to my daily routine.
In fact, that dislike manifested itself into several things that just straight-up went wrong with my diabetes on vacation:
Rollercoaster blood sugars: My blood sugar crashed 3x on the morning of our road trip to our vacation destination – THREE TIMES before we even got there! It got me worried that consistent lows would be a theme throughout the week, but naturally, it was actually highs that turned out to be more of a problem. My diet and exercise routine were wayyy out of whack from my norm, and I had trouble getting accurate carb counts for some of my meals (particularly dinners that we ate out at restaurants). I did my best to combat highs by walking EVERYWHERE – thank goodness that was an option for our plans most days – but I was still frustrated that I wasn’t experiencing as many flat lines as I would’ve liked on my CGM graph.
A pod failure: Our first full beach day was marred by a pod that failed, seemingly the instant that I dipped my toes into the Atlantic ocean. The roar of the waves almost drowned out the shrill beep emitting from my pod, but once I was back ashore there was no mistaking that something (a bent cannula? The freezing cold water? Some other mysterious variable?) had triggered the pod to fail. And as my luck would have it, I didn’t bring a new pod or insulin to the beach with me, so I decided to wait until we walked back to our house to actually do something about it. Under normal circumstances, I’d never delay replacing my pod, but since I knew we’d be walking back home soon I figured it’d be okay to wait.
A sensor failure: Our second and sadly last full beach day couldn’t be enjoyed without another diabetes disruption – this time, it was my sensor that failed, and only after we’d been on the beach for about an hour! While this matter wasn’t as urgent, it was still annoying, because I didn’t have my meter with me (ugh, I know, I sound like a total diabetes rookie here). I chose not to worry about it and make the most of our beach day, and rely on my body’s signals to let me know if I was going low.
Sounds like I had my fair share of diabetes drama on vacation, right? I can’t deny that these instances were varying degrees of frustrating, but also, I’d be remiss if I didn’t also consider all the things that went right while we were away:
I didn’t forget to pack any of my diabetes supplies for the trip! While I may not have had certain things (see reference to meter, pod, and insulin above) on me at all times, I did always have back-ups at the house, and remembered to carry low snacks with me no matter what.
Despite delaying a pod replacement for my failed pod, my blood sugar was totally fine! I didn’t spike from that whatsoever.
Even though I didn’t have a working CGM for 4-5 hours on my last beach day, I wound up having a stellar blood sugar when I checked it with my meter once I was at the house. I was 81! I attribute that to staying hydrated and getting exercise on the beach, as my boyfriend and I had played volleyball with a couple of other beachgoers for a solid 45 minutes.
I was able to walk just about everywhere, which was a massive help to both my mindset and my blood sugars. Turns out, walking approximately 50 miles total over the course of one week is a really good thing for a person with diabetes on vacation.
My travel partner was incredibly mindful and considerate of my diabetes needs over vacation. Whether that meant walking with me at 10 P.M. at night to fight a stubborn high, or splitting a super carb-y meal at a restaurant so it would be easier for me to bolus, he made the entire trip so much better by being a thought partner with me when it came to taking the best possible care of my diabetes.
Also, not especially diabetes-related, but a personal milestone unlocked: I didn’t get sunburnt at all from this trip. Dare I say that I’m actually TAN now?! (And by tan, I just mean that my pale skin is speckled with a few more freckles now, given me the illusion of being tan. I’ll take it.)
So yeah, I could choose to dwell on the things that went wrong with diabetes while I was away…but then when I think about what went right and take a look at that list above, they absolutely outweigh the snafus. Diabetes tested me over the course of this trip, but it certainly didn’t ruin it, and I’m still very much so looking forward to the next time I can get away for another week.
Sometimes, when you’re in the most random of places, surrounded by a couple of people you know but mostly strangers, but the vibe is juuuuuust right and you feel perfectly at home?
That kinda describes how I felt at…an arcade bar, of all places, on a Saturday night outing earlier this month.
I was at the local arcade bar with my boyfriend and a bunch of our friends. I always have a blast when we go there, and this particular evening was no exception. But what made it extra special was what happened when I was playing pinball.
I was using arguably the best pinball machine on the property (the Lord of the Rings themed one), and my favorite band from my teenage years (okay, and admittedly probably my favorite band of all time…My Chemical Romance) was blaring on the speakers. I was on cloud 9 from that alone, but then this happened: The person playing Pirates of the Caribbean pinball next to me (another excellent choice), nonchalantly said to me, “I miss my Omnipod…my insurance won’t cover it for me anymore.”
I glanced sideways at him, not wanting to lose track of my silver pinball but also wanting to show my interest in the conversation. I nodded empathetically, and said something about how insurance matters can make things so difficult. He agreed, before quickly showing me his “ancient Medtronic pump”, deftly maneuvering it from his pocket so the tubing wouldn’t get tangled around anything. I smiled and we both returned our attention back to our respective games, which we went on to play in a companionable silence.
It was totally random, not at all expected, but a sweet and subtle reminder that I’m not alone, even in places where it seems like diabetes is the last thing on anyone’s mind except mine. I hope this guy felt the same way…a little positive reassurance that we’re all in this together and doing a really great job of living well with diabetes.
“A1c: Also known as Hb1c or hemoglobin A1c, this is a test that is conducted every 3 months (or as requested) by an endocrinologist. A patient gets blood drawn to determine the average amount of glucose concentration in the blood during that 3 month period. The result of this test is a percentage amount, with 5% being an average result for a non-diabetic individual.”
This is the definition of A1c that I’ve shared in the diabetes dictionary section of Hugging the Cactus, and while of course the meaning and purpose of an A1c test will never change, one thing certainly has – and that’s the question of whether or not it’s the gold standard metric that indicates diabetes management.
That’s because A1c has a little competition called time in range. The concept is exactly what it sounds like: It’s an indicator of the amount of time a person with diabetes has their blood sugar within their preferred range, and it can best be captured by a percentage (e.g., I spent 70% of my day yesterday in range, with 30% of my readings either lower or higher than my ideal range).
While these two metrics vary from one another in how they are captured and analyzed, they do have one thing in common for a person with diabetes…is it a data point to share with others outside your healthcare team, or is it something to keep to yourself?
To share or not to share A1c and/or time in range…that is, indeed, the question.
The answer is personal and unique to every individual with diabetes, and for me, I keep it to myself in both cases. I’ve never felt comfortable opening up about my A1c or time in range online or in person. I think that’s mostly because I struggle with comparing myself to others. I do my best not to, but I can definitely turn diabetes into a competition that I internalize at all costs because I don’t want other people to know that sharing about these data points makes me deeply uncomfortable.
It’s how I am, how I’ve always been, and likely how I’ll be for quite some time. I’m curious to discover whether or not starting the Omnipod 5 will impact that at all, seeing as I have high hopes that the system will greatly increase my time spent in range as well as lower my A1c. But for now, I’m content with keeping these diabetes numbers to myself, and will aim to get better about telling people that I prefer not to discuss either.