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.

Feelin’ Odd About my Pod

I don’t often perform pod changes in public. This is mainly due to the fact that I’m most comfortable changing my pod in my own home, where I have all my supplies readily available…and more importantly, it’s where I feel safe taking off a pod from an old site and putting a fresh one onto a new location.

So you can imagine the level of unease I felt when I had no choice but to change my pod at my office for the first time since starting my new job.

I did this plenty of times at my last office job, but that was always behind the privacy of a closed conference room door that I could lock and that nobody could see into. This level of discretion meant that I could take my time with my pod changes without worrying about someone seeing me and getting the wrong idea about what I was doing (even I can admit that it looks a bit suspicious to see someone in a non-hospital setting drawing an unidentified liquid out of a vial with a syringe).

Both fortunately and unfortunately for me, my new office space is so modern in its design that every single conference room is encased with glass walls and doors – making it all too easy to peer inside each one to determine whether or not it’s occupied. That’s great for off-the-cuff meetings, but not so much for someone who needs just 5 minutes to change an insulin pump site.

Due to the lack of privacy in my office suite, I had to venture out to the main building bathrooms as a next resort. But I wasn’t just going to use any old bathroom. No, I sought out the one that had what I suspected to be the least amount of foot traffic and also the cleanest sink, because I most certainly was not going to lock myself into a stall to ensure more privacy when changing my pod. Absolutely not. Sure, it would mean that I had the stall door blocking me from view, but it also meant I’d have to change my pod without a table in front of me to put my supplies on, and I wasn’t about to do that because it would virtually guarantee that I drop something on the unsanitary bathroom floor – or worst-case scenario, maybe even break my vial of insulin. I wasn’t about to risk that, so I set about changing my pod at the bathroom sink, keeping my fingers and toes crossed the entire time that nobody would walk in while I was at any stage of the process.

My mission was accomplished; a few moments later, I was rocking a brand-new pod and also marveling over how something fairly mundane (because I do it every 72 hours or so) could cause me such anxiety and make me feel self-conscious about needing to do this medically necessary routine in public. I’m not accustomed to feeling odd about my pod and the maintenance actions I take to keep it running smoothly – and to keep myself healthy, to boot – but there’s a solid, highly realistic chance that I’ll have to publicly change my pod again in the future. Hopefully, I can work on it so that changing my pod, whether within the walls of my own home or in the most public of locations, is something that I feel normal about doing, and worry less about whether or not people are judging me over it.

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.

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.

Diabetes in the Wild: Doggie University Edition

I’ve enrolled my dog, Violet, into Doggie University.

You see, Violet is a perfect pup…except for the fact that she is highly reactive. If she sees another dog on a walk? She barks. A person? She barks. A car? She sometimes barks. A leaf blowing in the wind? Yes, she’ll bark even at that.

Her extreme observation skills are impressive, but not exactly what I’d call acceptable behavior in terms of how a well-mannered dog should react to any external stimuli. So I decided to start formally training her with the help of a local trainer.

Violet loved her first day of school (in which she spent the full day playing with other dogs and getting introduced to some basic commands), but I wanted to be more hands-on with her training. That’s why I got a 1:1 lesson with a trainer so we could work together with Violet.

And it turned into a completely random and unexpected diabetes in the wild encounter – just as they usually tend to be!

Here’s my sweetpea, demonstrating her mastery of the “place” command!

I walked into our lesson and the trainer asked me, point-blank: “Do you have diabetes?”

I was surprised. How did she know? The blank expression on my face must’ve been obvious to her, because she then pointed out that she could see my pod and Dexcom on the backs of my arms. I was literally wearing my diabetes and completely forgot about it.

I said, “Yup, I am! Do you know someone who uses either of these devices?”

She nodded eagerly. “My sister has type 1 diabetes, too, so I’m pretty familiar with all the technology.”

I smiled warmly at her; after all, it’s always nice when a diabetes-in-the-wild interaction is as pleasant and straightforward as this one. We chatted for a couple of minutes, in which I told her about my job working for a diabetes nonprofit, and she shared with me that she’s aware of some of the bigger diabetes organizations out there and “all the great things they’re doing for people with diabetes”. I loved how she acknowledged that, and how seamlessly we were able to transition from a casual diabetes convo to putting my pup to work.

All in all, it was a great lesson for both me and Violet – in terms of how quickly Violet caught onto things and how well that quick diabetes talk went. I enjoy it when people feel free to ask me about my diabetes upfront rather than bemusedly ogle at my devices. It’s a reminder that even when it feels like the diabetes community has a long way to go when it comes to combatting stigma, there’s still plenty of allies out there who really do get it.

Happy Mail

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:

Violet is just as curious and excited about the Omnipod 5 as I am!

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!

Swimming Into a Pod Failure

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.

My community pool! Not pictured? My wailing pod!

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.

It’s No Big Deal

“Does it hurt?”

“Wait, no, I’m not ready!”

“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.

A routine pod change is no big deal to me.

“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.

A Bit Bumpy

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

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

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

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

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

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

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

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

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