What It’s Like to Wear a Medical Device 24/7

This was originally published on Hugging the Cactus on May 7, 2018. I’m sharing it again today because for as long as I continue to wear an insulin pump and CGM, I know that this is a question that I’ll be asked. Wearing these pieces of medical technology almost all the time has certainly changed how I feel about my body and my body image, and I elaborate on that below…

A question I’m often asked is: “Can you feel your CGM or insulin pump on your body?”

The simple answer to that is: usually, no. It’s something that you just get used to. You grow accustomed to seeing a lump underneath your clothing. You adjust to putting clothes on (and taking them off) carefully to avoid accidentally ripping a site out. You acclimate to showering without being completely naked.

And, of course, you get used to the questions from strangers asking about that device stuck to you.

But the more honest answer to that question would be that there are times that I feel it more than others. For example, sometimes I forget where I’m wearing my pump until I hit it against something (I’m a major klutz who constantly runs into doorways and trip over things, almost always managing to catch my pod on whatever it is), resulting in pain at the site and a curse word or two to fly out of my mouth.

I feel it the most, though, when people stare. Whether unconsciously or purposely, people do ogle at it in very not subtle manners. Which makes me feel extremely uncomfortable. It’s worse when they don’t even ask me what it is – I’d rather have a chance to use it as a teaching moment than to have someone walk away not knowing what the device does. This tends to make swimsuit season a little less welcome for me. Nothing will stop me from donning a bathing suit at the beach or by the pool, and I do so as much as possible in the summertime. But it’s just not as fun when I’ve got to cope with lingering looks, especially when I’m an admittedly insecure person in the first place.

So it’s a more complex question to answer than you might realize. Wearing a medical device 24/7 is humbling. It keeps me alive. I’m privileged to have access to it. I’m grateful for the ways it’s improved my life. I’m always wearing it, but it’s not at the forefront of my mind – unless it chooses to make its presence known by alarming, or I’ve got people blatantly checking it out. It’s kind of like diabetes itself. It can make you feel a gamut of emotions, but no matter what, it’s always there. It’s just a part of me, and I can deal with that.

My #1 Piece of Advice for Any T1D Who Wants an Insulin Pump (or Wants to Switch Pumps)

As someone who was so stubbornly resistant to the idea of switching from multiple daily injections (MDIs) to insulin pump for my entire childhood with T1D, I surprised myself quite a bit when I finally decided, around age 21, that I was ready to start using a pump.

And I haven’t looked back since I made that choice – that’s how much of a difference it made for me.

In my almost 10 years of pumping, I’ve realized that there is one, major piece of advice that I’d share with anyone who is looking to make a similar switch, or even go from one pump to another. It doesn’t matter if that person is newly diagnosed, a diabetes veteran, or somewhere in between. Or if a person is a pro at adapting to new technology, or wary of any kind of electronic device… because in my humble opinion, this advice applies to all. So what is it?

Don’t do it alone.

When I started using an Omnipod back in 2015, it was with the help from a team that included my endocrinologist, a diabetes care and education specialist, and a more experienced Omnipod user who I actually lived with – my mother. It was the guidance that all three of these people gave me that ensured a fairly easy transition to pump therapy.

My experience was starkly different when I went on the Omnipod 5 late this past summer. In a word, I was too cocky about it. I thought I knew enough from my prior pod experience, and had enough exposure to all the literature that had come out about the Omnipod 5, that I could make this upgrade just as seamless as it was to start up pump therapy in general. And that was most definitely not the case. I struggled for the first 8-10 weeks of life with the Omnipod 5, and it was such a rollercoaster that I seriously questioned whether or not I’d made the right decision to try out a more advanced pump.

Of course, I don’t regret switching to the 5 – not at all – now. That’s because I did finally get help, first from the nurse practitioner at my endocrinology office, and then from an educator at Omnipod who was really able to explain the 5’s algorithm to me and suggest changes that ended up working wonderfully for me within days of our conversation. It just goes to show that it’s okay to reach out for help when I’m feeling stuck with my diabetes (or when I need it in any other facet of my life, to boot), and I’m here to remind you of that, as well. Don’t do it alone. Lean on your community. Get support from healthcare professionals. And you’ll be amazed by the outcome.

It’s More Than a PDM

My PDM (Personal Diabetes Manager) is more than just a medical device. It’s basically an extension of my body at this point.

Much like people treat cell phones as a must-have-on-me-at-all-times sort of item, that’s how I feel about my PDM. I carry it (and my cell phone, TBH) around as a small but mighty stack of technology. When I set it down somewhere and struggle to recall where I left it, I panic and can’t focus on anything else until I’ve found it. I make sure to keep the battery charged, and would argue that I get more concerned if the battery is low on that device than I do with my phone. And I’d sooner give my phone over to a toddler to play around with than consider handing off my PDM, even to a trusted family member or friend.

It’s more than just my PDM, it’s a lifeline.

In a world that remains ever-increasingly reliant on technology, there are times where I certainly wish I didn’t have to depend on my PDM so much. It would be nice to not have to carry it around all the time and fuss over it, making sure it’s charged and working properly. But just when I start to grow resentful of the device, I remember how much easier, overall, it’s made my life. It’s given me freedom that I wouldn’t have discovered if I’d chosen to stick to multiple daily injections. I also believe that, combined with my Dexcom CGM, it’s responsible for my improved blood sugars and time in range into my adulthood.

So even though I didn’t exactly wish for a PDM to be an extension of my very being, I’m glad that it is, because it’s proven to be a valuable piece of equipment in my diabetes care toolkit.

Battery Blues…No More?

Earlier this year, I wrote a post about my dissatisfaction with my Omnipod DASH PDM’s battery life. Basically, I was frustrated that the dang thing needed to be recharged practically every day. But what bothered me even more was how suddenly the battery life would seem to drop – it would dip from 100% charged to 40% in the matter of a few short hours, and worse, it would do this totally inconsistently so it was nearly impossible to predict when my PDM would need a sudden charge.

I thought my PDM problem would be solved when I got my new Omnipod 5 PDM; however, it persisted. And that’s what indicated to me that there was some type of user error going on that I needed to get to the bottom of before I resigned myself to having to charge my PDM everyday.

So I called customer support and told them about what I was experiencing, and explained that on paper, I was doing all the right things to preserve battery life: using the dedicated charger, using minimal screen brightness, hitting the power button to shut off the screen when it wasn’t in use…I wanted to know, could they offer me any battery-saving tips?

Little did I know that a simple solution to my battery blues was just one phone call away!

That’s when I was informed that disconnecting my PDM from Wi-Fi would be a good starting place; after all, the Wi-Fi connection only comes in handy when uploading my data via Glooko. I was amazed, but the moment the customer support rep said this, it made total sense. This whole time, I’d been connected to my home’s Wi-Fi for essentially no reason because it has nothing to do with how my insulin is delivered (the system uses Bluetooth for all communications). I only ever entered my Wi-Fi information in the PDM because silly me thought it was needed for effective operation, but nope, turns out the only thing it’s good for (besides uploading data, of course) is sucking the life out of my PDM battery.

As soon as I ended the call with customer support, I turned off my PDM’s Wi-Fi settings and charged it to 100%. Nearly 24 hours later, it’s sitting pretty at 80%, a much better battery life than it was displaying previously. Problem solved, and proof that I definitely have more to learn about how to best utilize all aspects of my Omnipod 5 system!

Imaginary Beeps

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.

Omnipod 5: My Initial Impressions

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.

Baby’s first automated insulin delivery system!

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.

Navigating New Insulin Pump Sites and Nerves

This was originally published on Hugging the Cactus on September 7, 2020. I’m sharing it again today because my mom and I were recently talking about pod placements and the places where we would (and would not), hypothetically, feel comfortable wearing a pod. It got me thinking about how I’ve had to work up the courage to try new sites over the years, which inspired me to write this post to hopefully help others who feel the same way about navigating new pump sites and nerves. Read on for more…

Am I the only T1D out there who feels incredibly nervous about trying new insulin infusion sites?

I’ve been this way as long as I can remember, now that I’m thinking about it. Throughout my childhood, I stubbornly stuck to injecting in my arms, legs, and upper buttocks (tee-hee) because those were the areas I felt comfortable with. I don’t think I even considered jabbing myself in my stomach until I was in my teens, and it was only after I realized the importance of site rotation and reducing scar tissue.

So it’s kind of funny that when I went on the OmniPod just over five years ago, I only used my stomach and my lower back (just above the upper buttocks region, tee-hee) for pod placements. It was partly because my guinea pig – I mean, my mom – used those areas for her pods with success, and also because I was hesitant in the beginning to wear my pods on my arms or legs because of their increased visibility.

It went that way for a couple of year – four basic sites ’round my abdomen – when it occurred to me yet again that site rotation was also important for insulin pumpers, not just MDI-ers (multiple daily injection…ers). So I added my upper arms into the mix, and soon after, my upper thighs followed.

The little diagram (courtesy of Insulet/OmniPod) above only shows a few of the sites that people with diabetes use…over the years, we’ve gotten a lot more creative!

But lately, I’ve shied away from wearing pods on my thighs because the area isn’t overly comfortable. When I roll over in my sleep at night, my pod presses up against my leg and the resulting pressure is just enough to disrupt my sleep and make it difficult for me to find a more restful position to sleep in.

As a result, I’ve started contemplating potential new pod sites, and one of the first places I went to for advice was…Instagram! Because…duh.

The DOC (diabetes online community) on Insta is a natural resource for this sort of thing because many people tend to share photos of their sites. It’s kind of a thing. One simple scroll through my feed taught me that people can get very inventive when it comes to finding new locations to place their CGMs and insulin pump infusion sites.

I saw people wearing Dexcoms on their forearms and calves. I saw pods on backs, calves, and even the upper chest area, the latter of which I found most intriguing. For men, it seems like a very accessible spot that causes little irritation, but for women? How the heck did the T1D ladies I saw with pods on their chest deal with it?

The general consensus, it seemed, was that women wearing pods on the upper chest agreed it was a site with great absorption and minimal discomfort.

I was still skeptical, though. I was worried about how it would look if I was wearing a v-neck tank with my pod poking out of, well, my bra! Then it hit me that my pod garners questions from strangers regardless of where it’s located. Furthermore, people will (probably?) be less likely to ask about it if it’s located on my chest because, um, that’s really awkward. My eyes are up here, people!!!

Then I remembered: I could give the site a try without wasting a pod because I have a demo pack that I got from a diabetes conference awhile back! The demo pack comes with a dummy pod that looks and feels just like a regular pod, but there’s no reservoir built into it, so insulin can’t be injected into it.

So right now, as I’m writing this, I’m wearing two pods: one on my upper arm that’s actually giving me insulin, and a fake one on my chest just to see how I like it. I must admit, so far, so good! I slept comfortably with it on last night and I haven’t had any issues wearing clothing or undergarments with it. I even went for a jog with it on and got pretty sweaty, but it stayed secure/I didn’t feel it bouncing around at all (thought the adhesive got a bit too damp for my liking…it stayed on but if I wasn’t careful I totally could’ve knocked it off).

While I’m still having a hard time wrapping my head around an actual cannula piercing my skin at this location (eeeek), now that I know I can handle the pod itself living there, I’m one step closer to trying (and liking) a site that’s more intimidating to me – a win in my book.

An Onslaught of Alerts

Imagine receiving the same notification on your phone every 5 minutes…over and over again…nonstop until you actually do what it’s demanding to you.

Sounds maddening, right?

Well, that’s exactly what I experienced with my Dexcom app recently. Every 5 minutes on the dot, I got a “Calibration Alert” push notification that told me to “enter new blood glucose reading to maintain your sensor accuracy”. Doesn’t sound like too big of an ask, right? Why not just do it?

Of course I just did it – the first handful of times that it asked. But when this alert persisted to appear on my phone each day, around 24 hours after I’d calibrated my Dexcom sensor, I started to get super irritated. But I was also confused. I shouldn’t have to calibrate my Dexcom, like, ever. The G6 was designed to make it so calibrations are a thing of the past. I only ever even bother to calibrate it within the first few hours of wear if I feel that the blood sugar it’s reporting is really off, and that usually forces it to correct itself and show far more accurate readings fairly quickly.

So why was my Dexcom being so forceful with the reminders for me to calibrate?

Imagine seeing this alert pop up on your phone…every 5 minutes…for an hour…or 3. That’s a few dozen reminders too many.

I knew that my best shot at finding the answer to this question was by going to the people who are intimately familiar with the ins and outs of Dexcom devices – no, not the manufacturers themselves. I’m talking about my colleagues, of course. (One of the best parts about working at a diabetes nonprofit is that my coworkers and I collectively have 100+ years of diabetes experience under our belts and constantly ask one another for advice or wisdom regarding various diabetes scenarios.)

When I asked them if they’d ever encountered anything like this, one person explained that the CGM can get a little confused if, when after the initial two-hour warm-up period, a super high or a super low blood sugar can trigger the system to get stuck – almost like it’s unsure of what it’s reading. This tracked for me because when I started up this particular sensor, the two-hour warm-up period collided with a particularly nasty low blood sugar of 35. That blood glucose value is low enough that the system can’t even pick up the number “35” – instead, it just shows that I’m “LOW”.

So as a result of this, my sensor was likely just in need of calibrations every 24 hours just to make sure it was working properly. It’s probably in the code of the software or something to prompt users to calibrate every day until the system feels more confident about what it’s reading. That makes sense and all, but dang, is it annoying. Sure, I could’ve silenced the alarms a lot faster if I just calibrated whenever I got the first alert of the day, but my schedule didn’t always allow for that. And besides, after 4 or 5 years of using the Dexcom G6, this T1D has gotten used to no more finger pricks; because of that, it’s hard to go back to old habits.

But hey, it has wound up being another diabetes scenario that I hadn’t experienced yet and just another lesson learned, so while it may have been a bit of a nuisance it was also educational. And I’m okay with that.

Do You Know How Long OmniPods Last?

This post was originally published on Hugging the Cactus on June 3, 2020. I’m sharing it again today because I have seriously benefited from learning the “true” length of time that a single OmniPod lasts on my body. Read on to learn more…

When people notice my OmniPod insulin pump, the first question that I’m asked is “what IS that?”

After I explain that it’s my insulin pump, and it’s called a pod, the second question I’m asked is some variation of “how long does it last?”

The canned answer that I provide is something about having to change it every three days, because that’s how the OmniPod is advertised.

But I’ve used this pump for years now and never bothered to really test this three-day limit. I’ve known for a long time that my pod works a handful of hours after the expiration alarm starts chiming, but I wasn’t sure about exactly how many hours I had before a pod expired for good.

So, the other day, I decided to find out.

Have you ever made your pod last longer than 80 hours? If so…are you a wizard???

My pod expired at 10:22 A.M. Since I prefer to change my pods in the evening, I figured it was the perfect time for this little experiment, assuming that the pod really would last me for the majority of the day.

And, well, it did! At 10:22 on the dot, the pod beeped at me to notify me that it was expired. And in the six hours after that, it would alarm every hour (on the 22nd minute) to remind me, time and time again, that it was expired. In the seventh hour – beginning at 5:22 P.M. – my PDM started chirping at me on and off every 15 minutes or so. First it was because I was running out of insulin, but then it was to really get the point across that my pod was expired!

I was determined to use every last drop of insulin in the pod, though, so I bolused for my dinner around 5:45 and I was pleased to discover that I got my full dose of insulin without any issues. As I was cleaning up after dinner, that’s when the signature OmniPod BEEEEEEEEEEEEEEEEEP went off as one blaring, unceasing alarm. I checked the time: 6:22 P.M.

So there was my answer. An OmniPod can last precisely 80 hours after you initially activate it for the first time (or in other words, 8 hours after you receive the first expiration message)…as long as it still has insulin in it. It’s definitely something good to know for sure now, because in the future, it might come in handy and help me avoid wasting precious insulin.

Ask Yourself These 6 Questions Before Trying New Diabetes Technology

This blog post was originally published on Hugging the Cactus on May 13, 2020. I’m sharing it again today because I think it’s super important to weigh the answers to these questions before deciding to try new diabetes technology. This is coming from someone who waited 17 years before she tried her first insulin pump, and even though it has had an enormously positive influence on my life and sometimes I wish I’d tried it sooner, I’m ultimately glad that I waited that long! Read on for more details…

So you want to try your first continuous glucose monitor. Or maybe you’re ready to leave behind multiple daily injections and switch to insulin pump therapy. Whichever diabetes device you’re looking to start using, there are some questions you’ll probably want to have answers to before decide that now’s the time to introduce new diabetes technology into your daily routine.

The following is a compilation of the questions that I thought long and hard about (literally for years) and that I wish I’d thought long and hard about before I made the transition to the OmniPod insulin pump.

1. Am I ready for it? It took me 17 years before I decided that I was ready to try an insulin pump. 17 freakin’ years!!! I spent most of that time being too afraid of introducing such a drastic change to a routine I’d had down pat for such a long period of my life. There are times when I wish I’d gone onto my insulin pump sooner, but ultimately, I’m glad that I wasn’t swayed by my family or doctors to go on it before I truly felt ready. By the time I started using my OmniPod, I had the maturity, responsibility, and emotional intelligence that I felt that I needed for an insulin pump.

2. Will I be able to afford it? Obviously, this isn’t a question that I wondered about when I was younger, but it’s one of the first things that comes to mind as an adult on her own health care plan. We all know that diabetes supplies are expensive, and it seems that the more technologically advanced something is, the more money that has to be forked over in order to obtain it. This isn’t right or fair, but it’s a simple truth and an important one to think about before choosing one pump or continuous glucose monitor over another.

3. Why do I want to start using it? I wanted to start using my OmniPod because my mom experienced great success when she started using it. And I decided to get a Dexcom CGM because I fell in love with the technology after undergoing a trial period with my endocrinologist. In both situations, I felt very much in control of my decision to start using these devices and I didn’t really listen to anyone else’s opinions. But I am very aware of the fact that social media and real-life friendships with other people with diabetes can often sway people in different directions. After all, if I saw a post on Instagram from a dia-influencer who was singing the praises of a Tandem T:slim pump, then I might seriously start thinking about switching to it (this has actually happened to me). But the bottom line is to think about the why – will this device enhance quality of life for me? Will diabetes be easier to manage with it? Will it help me achieve my A1c and/or blood sugar goals? Do I need to add something new to my routine because I’m feeling burnt out by doing things the same way all the time? Knowing why I wanted to use an OmniPod or a Dexcom CGM made me feel that much better during the whole process of learning how to use them – I felt like I had clear goals that would help me navigate the integration of these new technologies into my daily routine.

Did you know that Insulet/OmniPod has demo pods that you can wear? They don’t hold insulin or deploy a cannula, but they can give you a good sense of what it’s like to wear a pod on a daily basis!

4. Will I be comfortable wearing it 24/7? This is a big one! Pods, pumps, and CGMs are very visible, and it can be jarring to go from being “naked” to having bumps and lumps underneath clothes that can get caught on doorknobs, chairs, and the like. Personally, the benefits of my OmniPod and Dexcom outweigh something like this which is a bit superficial, but that doesn’t mean it’s not something to think about. But it’s also worth thinking about comfort and what is least painful when it comes to insulin delivery, so that’s why this is an important question to ask.

5. Do I know anyone else using it who can provide feedback from a patient’s perspective? I’ve talked about this before, but I’m not sure when, if ever, I would have seriously considered using the OmniPod if my mother hadn’t tried it first. The fact that we both have diabetes has probably made us a little closer and strengthened our bond, so if there’s anyone’s opinion that I’m going to trust when it comes to something like this, then it’s hers. I can actually remember her first few weeks on the OmniPod – in which she learned a lot of valuable lessons – and how pleased she was with it once a few months with it elapsed. She taught me the ins and outs of the OmniPod when started to use it, and I’d argue that her advice was more helpful than that of my diabetes educator. So I’d advocate gathering opinions from family and friends (if either is applicable) or the diabetes online community before going on a new diabetes device, in addition to the research component below…

6. Have I done enough research on it? …Like any smart shopper, it’s crucial to really consider all options and research them thoroughly, especially when it comes to the top contender. I definitely did not complete sufficient research before going onto the OmniPod or Dexcom; rather, I trusted that they were just right for me. If I were to switch to something else tomorrow, though, you can bet that’d I’d spend a lot of time scouring the web for every last bit of information on the device so I could make the most informed decision possible.

New diabetes technology can be both scary and exciting. But more than anything else, it can really make life with diabetes much more carefree, and I’m glad that in this day and age there are so many options available to people with diabetes that continue to be technologically impressive