T1D is like a prickly cactus (literally and figuratively), but I've learned to embrace it, thorns and all.
My diabetes journey began on Christmas Eve in 1997. That day, I became the third person with type one diabetes in my family. I was four years old at the time, so I've lived most of my life with diabetes. While some people may view this as sad, I've learned to embrace my chronic condition and live my life without limitations. You might say that I've taught myself to hug the cactus, so to speak.
When I'm not blogging, you can find me enjoying any or all of the following: time with family and friends, a quality cocktail, Harry Potter, a good book, General Hospital, pop culture from the last three decades, and tasty foods.
I love connecting with other members of the DOC (diabetes online community) - so please don't be shy, find me on Twitter or Facebook!
It arrived on a seemingly ordinary Wednesday, during a week in which I really needed a pleasant surprise.
I opened my front door to take my pup out to do her business when I noticed a large package on my front steps.
I wasn’t expecting anything to come in the mail, so I eagerly tore into it once my dog and I returned indoors.
And this sight was before me:
Yup, I’m the proud owner of an Omnipod 5 – finally!
I won’t be starting it until early next month, though. And I’ve got good reasons to delay it: 1) I’m traveling a decent part of August and I know from experience (or shall I say, my dear mom’s experience) to never try new diabetes technology when you’re out of routine, 2) I have about a month’s worth of old pods to use up before I officially switch over – I can’t imagine not using up my full supply just so I can get started on the new system faster. As I’m sure you must know by now, diabetes supplies are extremely expensive and I am diligent about using up every last pod, CGM sensor, and of course, insulin vial, before it goes into the trash.
While it’s a bit of a tease to know that automated insulin delivery is literally just feet away from me right now, it’s mostly very exciting to know that I have this to look forward to in the coming weeks. It’s nerve-wracking to go on new d-tech, yes, but the rave reviews of the Omnipod 5 have far outweighed any anxieties I have about starting the system.
And once I do, you can bet that I’ll be blogging about it!
Break ups…they’re hard not to take personally. Especially when they aren’t done in person, face-to-face.
Phone calls are worse. But letters are the worst. Breaking up with anyone by sending them a letter in the mail removes all emotion from the equation. But I suppose there was no other way for my endocrinologist to end our doctor-patient relationship than via a vague, impersonal letter that wasn’t delivered just to me, but all of her patients.
That’s right…my endocrinologist broke up with all of us and informed us in a letter that she was leaving her (well, OUR) endocrinology office.
She’s officially gone from the practice that I’ve been going to for nearly half of my life now, and I’m not going to lie, her abrupt departure shook me a bit. It’s not that I’m going to miss this doctor – I was never a huge fan of her bedside manner or approach to my concerns with my diabetes care. It’s more so that I’ll miss the convenience of traveling to this particular clinic, as well as the familiarity I have with all of their processes.
And it’s even more so that this situation is forcing me to face something I’ve been in serious denial about for quite some time: I need to prioritize finding a new endocrinologist that actually understands my wants and needs, and break out of the cycle of complacency that I’ve been stuck in all my adulthood.
It’s a daunting prospect and a reality that I’ve been trying to accept as I’ve gotten older and as my needs have changed, but real talk? Shopping around for a new doctor is exhausting. It’s just as bad, if not worse, than dating. You read about a person online, get your hopes up that they’ll be a perfect match, make plans to pencil them into your schedule, and then when you finally meet them…you’re disappointed. Wash, rinse, and repeat until you make a genuine connection with someone. Only the stakes feel higher in this situation because a doctor plays an integral role in your overall health and well-being.
So while it’s far from fun to find myself on the search for a new diabetes provider, I can still find a silver lining in the scenario. And that’s the belief and optimism that there is a doctor out there who will become a reliable and supportive player on my diabetes care team. I will find someone who is not located too far away, and who is kind, caring, compassionate, and knowledgeable when it comes to all things diabetes.
I’ve just got to have faith – and a little patience as I pour time and energy into the process.
A version of this blog post was originally published on Hugging the Cactus a couple of years ago. I’ve updated it and am sharing it again today because it still rings true – I’m good at minimizing my diabetes. Multiple aspects of it, in fact. Read on for more…
I was just sitting here, minding my own business when I got to thinking about how good people with diabetes tend to be at minimizing.
I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life. And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.
I’ve conversed with plenty of other people with diabetes about whether or not we, as individuals, have struggled to afford insulin. Most have been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies.But just because I’m able to afford insulin, that doesn’t mean that I haven’t had to make certain choices that I might not have had to make if I didn’t have diabetes.For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other people. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.
This blog post was originally published on Hugging the Cactus in 2019, and again in 2020. I’m sharing it for a third time because 1) it’s one of the most popular posts I’ve ever written and 2) it’s STILL an issue debate among the diabetes community! My opinion on bleeders being readers hasn’t changed. Read on for more (and be warned that the topic might make you a little squeamish, if you wince when talking about blood).
I placed the new Dexcom G6 sensor on my abdomen, hovering my index finger above the large orange insertion button. I pressed it, exhaling as I felt the minute needle pierce my skin’s surface. I looked down, and started to rub the adhesive in circles to make sure it was stuck, when I saw blood. Not just a drop, but a decent-sized pool forming beneath the sensor. Before long, just about the entire surface of the white adhesive was soaked in red.
Yeah, this was going to be a no-go.
It’s pretty rare for me to experience blood at the site of a Dexcom sensor. If I had to put a number on it, I would say less than 10% of my insertions draw blood. An even smaller amount – like, 2% – have caused me to bleed as much I did in the scenario described above. But I know I’m not alone in my bloody sensor experiences – it’s something that many other T1Ds who use a Dexcom have gone through.
There’s a bit of debate, though, that I’ve noticed in the past on Twitter threads and Instagram posts. What to do with a bleeder? Keep it and assume that it’ll read blood sugars normally? Or change it immediately and call Dexcom for a replacement?
Are bleeders readers? Or does it depend?
I’m going to go with…it depends.
Obviously, in that situation I described in the opening of this post, I decided that it wasn’t a good idea to keep the sensor on my body. There was too much blood and I didn’t trust that it would adhere well to my body. I didn’t know how long it would take for the blood to stop (only a few minutes, but still), and I couldn’t be sure that it wouldn’t mess up my readings. On top of that, I wasn’t trying to stain my clothing, if I could help it.
So in that circumstance, I did change my sensor right away, and was glad that the second try resulted in a much cleaner, blood-free insertion. I called Dexcom, explained what happened to the customer support representative, and got a replacement sensor mailed to me.
However, just about any other time I bleed upon a sensor insertion, it tends to be a minuscule amount of blood. I usually don’t even notice until it’s time to replace the sensor, and there’s a bit of dried blood left on the site. Other times, I’ll see small beads of blood forming underneath the spot where the transmitter snaps in. And there’s been a couple of occasions that I’ve bled a fair amount and been totally unaware of it until I caught my reflection in the mirror and noticed the blood staining the white adhesive. And in all of those cases, I’ve kept the sensor on for the full ten days, without noticing any discrepancies in my readings.
All that considered, in my inexpert opinion, I think that bleeders usually are readers and that they’re safe to continue wearing. Of course, there will be exceptions, like when there’s just too much blood to salvage the sensor. But every time I’ve kept using a bloody sensor, I’ve had the same amount of success with its functionality…so yes, I think that for me, bleeders are indeed readers.
I have strong opinions about ice cream. Potentially controversial ones:
Chocolate ice cream is the weakest flavor out there.
My ratio of ice cream to mix-ins is…gimme ALL the mix-ins. The more chopped-up chunks of goodness, whether it be cookie dough or candy, the better.
Ice cream tastes best when it’s a little softened – like, almost to the point of being soft-serve consistency. I used to microwave my ice cream for about 20 seconds when I was a kid before eating it and loved every drop of my ice cream “soup”.
See? I warned you. Those are some triggering statements I just made about my personal ice cream preferences. But one not on that list, that I think most people would happen to agree with me on, is that sugar-free ice cream just ain’t it.
“Oooh, Molly, look! They have sugar-free ice cream on the menu, are you going to get some?” One of my truly well-meaning girlfriends asked me this, ever-so innocently, on a recent ice cream outing.
I remember raising my eyebrows incredulously as my eyes scanned the regular list of ice cream compared to the sugar-free options. There were dozens of delectable-sounding regular ice cream flavors: all the traditional ones, plus more exotic ones like cotton candy, blueberry pie, s’mores, German chocolate cake, coffee kahlua cream…and then in direct opposition to that were TWO, yes TWO meagerly sugar-free choices: black raspberry and coffee.
I turned to my friend and, as non-condescendingly as I possibly could say it, told her that those “choices” had to be a joke and that furthermore, sugar-free ice cream just ain’t it for me. If I’m going to eat ice cream (and I’ve consumed LOTS of it this summer, let alone throughout my lifetime), then I’m going for the real stuff – no question about it. So with the air cleared on that particular matter, we both got matching ice creams (the blueberry pie flavor with blueberry and graham cracker swirled in a vanilla cream base) and enjoyed the heck out of them.
“I’m just…tired. Maybe I’ve been going through burnout these last couple of months and I didn’t even realize it until just now,” I said, sinking back into my chair.
I was at a virtual appointment with my therapist when I uttered these words, surprising myself because the thought that I’ve been experiencing burnout hadn’t occurred to me previously. But the moment I said it out loud, I knew it was true.
It just makes sense. It explains some of my more turbulent blood sugar levels as of late. It explains my frustration, lack of interest, and utter annoyance that I feel every time I check my blood sugar levels or calculate carbohydrates for yet another dose of insulin. And it definitely explains why yes, I have indeed been tired lately – more often than I’d like to admit, I’ve had to get up in the middle of the night to treat a low or correct a high, so naturally, my sleep is presently fitful at best.
I guess I didn’t connect the dots right away because I was in denial. I still talk about my diabetes all the time. I’m still able to show up and perform at my full-time job at a diabetes non-profit. I still take insulin for all of my meals, just maybe not the right amounts all the time. So because I was “still doing” all the normal aspects of my diabetes management routine, I assumed that I wouldn’t fall victim to another round of burnout.
But this is when I remind myself that burnout doesn’t always look the same. Burnout can mean wanting/choosing not to take insulin, paying less attention to blood sugars (if any at all), feeling cranky about all things related to diabetes, or even being depressed or flat-out tired when just thinking about diabetes. And there’s probably other ways that burnout can manifest itself that I haven’t even experienced yet, even though I’ve lived with diabetes for 24 years.
With that last point in mind, in particular – the length of time I’ve lived with diabetes – it’s no damn wonder that I’m tired. And it’s okay for me to feel this way. I’ll just ride the burnout wave as long as it happens to last this time around, and check in with myself (and absolutely my therapist) as often as needed.
The latter half of July in New England has been hot, hot, hot this year. It’s almost pleasant compared to last year’s rainy summer months, but let’s emphasize “almost” in that sentiment.
Fortunately, something that makes the heat a bit more bearable is the fact that the condo complex that I live at has a pool! And what’s even better is that it’s pretty easy to find slots of time on the weekends to hang out by it and enjoy it undisturbed by other community members. Case in point? My boyfriend and I found an hour on a scorching Sunday evening to take a dip before grilling some chicken and veggies for dinner.
We had only just entered the pool up to our waists when a familiar screeching sound blared in our ears. Yup…my pod had just failed.
Rather than get cranky about it, though, I just shrugged and figured it was no big deal, I had to change it in the next few hours, anyways. I was about to rip it off my abdomen when my boyfriend pointed out that the moment I submerged myself more fully in the water, then I wouldn’t hear the screaming pod anymore. Sure enough, he was right – I could only hear the shrill sound when I was underwater, making for an interesting soundtrack whenever I swam under the water’s surface.
We swam and chatted for about an hour before deciding that I probably shouldn’t procrastinate any longer when it came to putting on a new pod. So we dried off and headed inside, and discovered that my blood sugar had lingered in the low 100s the entire time. That was a welcome sight to see – my assumption is that I’d had enough insulin on board from earlier in the day that coupled with the exercise I got from swimming to prevent any sort of blood sugar bump.
So even though I literally swam right into a pod failure, it worked out in a funny way. It’s nice to know that pod failures don’t always have to be a total nuisance.
I knew something was wrong when the walls of the soda and seltzer aisle felt like they were closing in on me, Star Wars-trash-compactor style.
On a recent trip to the grocery store, I went low. And when I say low, I mean low – I wasn’t just shaky, I was sweating literal bullets and having a hard time seeing straight in front of me.
My boyfriend – thank goodness he was there – knew something was wrong just by looking at me. He suggested that I grab some fruit snacks from my backpack and I heeded, tearing open the small foil packet and tossing the contents back as quickly as I could. I chewed, grimacing as I tasted the strangely saccharine, perfume-y gummies, but I barely cared about the taste. I just wanted to feel better. That’s when my boyfriend placed a hand on my back, noting my clammy state, and escorted me over to the dining area at the front of the store.
“Just stay here, I only have a few things left to grab. Maybe you’ll be feeling better by checkout time,” he said, before asking me if I was okay to be left alone.
I was. I hated that he was seeing my like this, in this vulnerable, sweaty state that seemed impossible in the chilly air of the grocery store. I told him I would sit and wait there for him, fighting the feeling that I was a small child waiting for a parent to finish up some boring adult task. As I nearly collapsed onto a chair, all I wanted to do was shrink so nobody could see me: It seemed as though all sets of eyes in the vicinity were locked on me, the perspiring wonder who looked quite unwell.
I was only on my own for about 5 minutes, but time dragged as I anxiously awaited my boyfriend’s approach to the checkout line. I thought I’d wanted to be alone as I let the fruit snacks kick in, but turns out the opposite was true. I clung to his side as I slowly registered that I felt safer around someone who knew exactly what was wrong with me and how to handle it if things got worse.
As we exited the store and loaded the groceries into the car, I noted that my shakiness was dissipating, as was the beads of sweat on my body. This low episode was over and I was relieved to be on the other side of it. I was also relieved that I didn’t have to go through it alone: turns out lows are a bit more bearable when you have someone else with you to help you through them.
“I’m LITERALLY afraid that I’m going to hurt you!!!”
These are all phrases uttered by my dear friend who was ultra-curious about the site change I had to do in the middle of our hangout. She wanted to watch me do it, but I stepped it up a notch by asking her to play a key role in it: I invited her to remove my old pod from my leg.
“Just do it, it’s just like ripping off a band-aid. I can guarantee you won’t hurt me.” I said, in an attempt to reassure her. I also swore I wasn’t lying just to make her feel better, because I’ve rarely ever experienced a pod-rip-off that truly hurt.
“But there’s something in you, right? Like a needle?” Her face creased with worry. I smiled and told her that yes, there was a cannula that was in my skin, but I couldn’t feel it.
“Let me start it for you,” I said, when I realized she still wasn’t quite ready to rip it away. I peeled up an edge of the adhesive and she started squirming.
“You don’t have to do it if you don’t want to -” I said, but just as the words left my mouth, she finally tore off the pod. Much to my chagrin, a drop of blood appeared and she squealed as I began to apologize profusely and explain emphatically that it didn’t hurt, it’s just that sometimes blood will appear and nothing can be done about it.
“I can’t believe you have to do this every 3 days…” she said, her eyes widening in wonder. I told her I’ve done it so many times now – literally just over a thousand, according to my calculations – that it’s no big deal. I’m used to it. It’s just life with diabetes…lots of repetition and more math than I’d like.
I accepted my reality a long time ago, and I’m truly at a place where it’s no big deal.
Would you believe me if I told you that last weekend, I ate mostly carbs for 36 hours straight and totally avoided high blood sugars the whole time?
It sounds wild, but it’s the truth! I went on my annual weekend getaway with my college besties and it was the loveliest time filled with sunshine, conversation, and tons of delicious food. I can’t remember the last time I ate that much in such a short window of time, but it was all worth it, especially because my blood sugars didn’t pay the price for it for once.
Here’s the breakdown of what I ate:
2 slices of Mediterranean-style pizza and 3 chicken tenders for dinner, the first official meal of the weekend trip
2 glasses of wine
Handfuls of crackers and cheese because who doesn’t love that with wine
1 blueberry bagel accompanied by 1 fried egg for breakfast
Salad and heaping scoop of ice cream for lunch
Pita chips for a snack
Panko-crusted haddock with jasmine rice and veggies for dinner
2 cans of cider (and maybeeeee a glass or two of bubbly)
1 everything bagel slathered in goat cheese plus 1 fried egg for breakfast
2 slices of leftover pizza for lunch, which is also when I arrived home from the trip
It definitely wasn’t my healthiest, most balanced weekend of eating, but I’m more than okay with that because it was about enjoying my time with my friends and indulging a little rather than stressing the whole time about bolusing and blood sugars. And you know what, I think that my laidback, let’s-just-savor-this approach is partially the reason why I had such stellar weekend blood sugar levels. That, coupled with extended boluses for most of my meals (you know that pizza and bagels contain alllll the slow-acting carbohydrates), really helped me achieve the relaxing weekend that I wanted.
Now if only I could get away with this on a regular basis – as I write this, my blood sugar is coasting from a peak of 248 back into the low 190s after I dared to consume a bagel at lunch in the middle of my busy workweek. But it’s all good, and maybe just evidence that I should try to remember to live in the moment on weekends of fun like this one and prevent diabetes/blood sugar from taking center stage. Perhaps that’s the key to more stable numbers.
If nothing else, this serves as a reminder to me that even with diabetes, I can still enjoy a sh*t ton of carbs every now and then.