My New PDM

After four years filled with various highs and lows, I had to say farewell to the PDM that was virtually glued to my side, working with me to manage my diabetes.

Our parting was inevitable. Around the Fourth of July, I noticed that the battery symbol on my PDM was low, meaning that the triple A batteries within needed to be replaced. I put fresh ones in, but upon the system restarting, the PDM asked me to input information such as the date and time. And then…the pod I’d been wearing for less than 24 hours beeped loudly, signaling to me that it had failed. I figured it must be due to the battery replacement, but this definitely wasn’t normal. So I did some investigating.

I consulted with my mom and she told me that this was a sign that the internal battery within the PDM, the one that cannot be replaced, was starting to run out of life. She advised me to call Insulet to get a replacement PDM. That’s how I discovered that the warranty on my PDM actually expired in January of this year, and that I’d have to pay a nice chunk of change (about $500) to get a new one, under warranty.

It was a painful process, as I’ve detailed in recent posts, but I finally did get my new PDM. Fortunately, it only cost me $100 (I guess I should be glad I met my $900 deductible so quickly).

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A very special delivery.

I waited to power up the new system until I was due to change a pod – didn’t want to waste a pod if I didn’t have to – and I’m really glad I set aside a half hour or so in order to input all of my settings into the new PDM. It was a bit stressful, really, and just as I was cursing the PDM for not automatically knowing all of this stuff about me, it was set up and ready for action.

It was a strange feeling, disconnecting myself from that PDM I’d relied on for four years. It sounds dramatic, I know, but that PDM and I have been through a lot. As I powered down the system, I had a little moment and felt gratitude toward the PDM (and I suppose all of its little quirks). I put it inside the box that the new one arrived in, and the old PDM now sits in my diabetes supplies cabinet, neatly tucked away so in the event that I need to consult it for old information or data, I can.

And now I can say I’ve got a shiny, pristine PDM that’s under warranty, which I must admit is a relief.

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Why is it so Difficult to Order Life-Saving Medical Supplies?

When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

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My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

Doing Everything Right and Still Getting it Wrong

One of the most frustrating things about having diabetes is feeling like you’re finally understanding it, perhaps even mastering it, only for it to lash out at you and make you feel like you don’t know shit about it.

It’s when you do everything right – check and treat accordingly, eat properly, exercise sufficiently – and still get it wrong when your blood sugars don’t behave the way they should.

I really hate when this happens, but I loathe when it happens on vacation…which is exactly what happened to me last week when I was in Maine for a few days.

Things started going awry shortly after I woke up (if only I knew then that I was in for a DAY!!!). I ate breakfast and my blood sugar swiftly started to rise. But I didn’t panic, because that’s what I wanted to happen. We’d be walking all around town for part of the morning and most of the afternoon, so I wanted my blood sugar to be on the higher side so that my chances of dropping dramatically in the heat were lower. I made the right call – soon after we got downtown, I noticed a diagonal down arrow on my Dexcom app. Things were headed in the right direction…or so I thought.

Not long after I spotted the diagonal arrow, I started to feel a little low-ish. Not super shaky or anything, but just a bit disoriented. I decided to pop into my favorite candy store to fill a small bag with treats so I had something sugary to munch on that would prevent a bad low blood sugar.

Those were mistakes number one and two…not consulting with my CGM again before eating candy, and going to town on it because it was CANDY and it tasted delicious.

Doing Everything Right and Still Getting it Wrong

Within a half hour, I was rising up, up, and up. I took a small amount of insulin to correct it, not wanting to be too aggressive and risk a real low. But as I walked around the amusement park with my boyfriend and his family, I just wasn’t coming back down like I thought I would. I lingered in the mid-200s for much of the early afternoon, and by the time we stopped for lunch, I was rage-bolusing to bring my numbers down faster. I even chose a lower-carb lunch option in the hopes that it’d stave off another high blood sugar, but nope, the BG gods were not in my favor that afternoon. As we moved from the amusement park to a brewery (a drastically different change in locale, I know), I bolused once again, and then noticed that the batteries in my PDM were low.

And that actually wasn’t a problem, because I was prepared enough to have spare triple A batteries on me – thank goodness! I took the old ones out, popped the new ones in, and waited for my PDM to come back to life. And it did…but it asked me to input the month, day, and year.

Dammit. THAT’S never a good sign. I entered the information and the system accepted it, and then my pod failed immediately after, which meant that I had to ditch the brewery and the group of people that I was with to get back to the house we were staying at as quickly as possible to put a new one on.

It doesn’t get much more irritating than that.

(Later, I discovered that my PDM’s internal battery was going, and that this behavior would occur every time I replaced the triple A batteries. Needless to say, I’m awaiting a new PDM from Insulet, because it’s just not smart to continue using an aging PDM.)

By the end of this day of turbulent blood sugars and unpredictable medical device malfunctions, I was mentally beat. I felt like I’d been thrown into the roughest of ocean waters and forced to tread water for hours in order to keep my head above the surface. It’s exhausting to know that, when it’s all said and done, I was really trying to do the right things and take care of myself. I was SO DANG PREPARED with those extra triple A batteries, for goodness’ sake! But man, diabetes…just when I think I know it better than anything else, it throws me for a loop and I remember a saying from Professor Mad-Eye Moody of the Harry Potter series (of course I’m talking about Harry Potter again, don’t act surprised): CONSTANT VIGILANCE. I’ve got to be aware of my diabetes at all times. I’ve got to know how to react and when so that my diabetes will remain in my charge – not the other way around.

A Tough Week

It’s like you’re always stuck in second geeeear

When it hasn’t been your day, your week, your month, or even your yeeeeear!

*Ahem* Oh! Pardon me, I was just singing that line from the Friends (yes, the TV show, of course) opening credits theme song. It describes how I’ve been feeling lately – maybe not for a full year, but most certainly this week.

It all started with high blood sugars. Not just any kind of high blood sugars, but the inexplicable sort of numbers that were happening for no apparent reason. Running temp basals, bolusing, stacking, drinking tons of water, testing for ketones, increasing activity levels, and reducing food intake were all steps that I took in order to combat the highs. But still, it seemed like every time I put food into my mouth, my blood sugar would jump up way too high, even though I was aggressively administering insulin to cover it. I was taking almost double what I should’ve needed to take, with less than stellar results.

I was dumbfounded. And angry. And incredibly stressed over it.

Ah, stress…the possible culprit?

I’m still not sure, but it seems to be the likeliest possibility. I’ve been running around like a mad woman since I returned to Massachusetts for a two-week visit. I’ve been busy planning my cousin’s bridal shower, meeting up with family and friends, going into work at the office Monday-Friday, contending with other health issues (scratched corneas…don’t ask), and calling various companies for health-insurance-related issues. I’ve had little time for myself, so it really isn’t a wonder that stress could be to blame for my hyperglycemic patterns.

That, and my tendency to forget that haste makes waste. Let me present to you the following photo:

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Yep, that’s little old me at my work cubicle, pointing out my barely-hanging-on pod. In my hurry to get to work and start my day, I had removed my tote bag from its spot on my shoulder in a rush. The force from the movement peeled half of my pod up and off my arm, leaving the cannula (mercifully) still stuck under my skin. I was furious at myself because the pod was less than a day old, and I couldn’t bear the idea of tossing it with more than 100 units of precious insulin left inside it. So I did what I could to cobble it back onto the site on my arm with copious amounts of medical tape, cursing myself for being so careless and exacerbating my stress levels.

There’s a lot more I could say and explain when it comes to the level of tough this week has been, but I think it’s time to move on. Life with diabetes means good weeks and bad weeks. The good weeks are to be celebrated, whereas the bad weeks ought to be acknowledged for how physically and emotionally challenging they are, but also for the lessons to be learned from them.

With that said…

It’s been a tough week, but a new one’s right around the corner and I’m determined to make it a good one.

That “Thing” on my Arm

“Yo, I don’t mean to be rude, but what’s that thing on your arm? Looks pretty cool.”

I turned around to face the stranger who was looking at me and asking me this question. It was well after midnight and we were on the rooftop of a fairly crowded bar. It was a balmy, summery night and I was enjoying the atmosphere with my boyfriend and my best friend. I’d had a few drinks over the course of the night, but judging by the state of everyone else on the rooftop, I was probably more sober than most of them.

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THIS is the sticker I should’ve been wearing that night…keeps things much more simple.

I could’ve answered his question in a scolding manner; it wasn’t a “thing”, it was a device that keeps me alive.

I could’ve totally dismissed him and told him to mind his own beeswax, because really, it is sort of rude to point out something on another person’s body.

I could’ve lied and told him it was something that it’s not to get him to stop bothering me.

I could’ve launched into an educational breakdown of what an insulin pump is and why my OmniPod looks the way it does.

I could’ve done any number of things, but instead I decided to say, “Oh, this is my insulin pump. I’ve got it decorated right now with a picture of a lighthouse because I like adding some style to it.” I smiled at him as a way of reassuring him that I really didn’t care that he was asking me, because I didn’t.

My straightforward answer seemed to please this random man. He told me again that he thought it was cool, and then we chatted a bit about where the lighthouse is and discovered we both have a connection to Massachusetts. Within a few brief moments, the conversation was over as we went our separate ways.

It was a perfectly harmless interaction that could’ve went a number of different ways, but to me, it’s all about context. This guy was just asking out of curiosity, and I truly don’t think he was trying to be rude about it. So I answered his question succinctly but good-naturedly, because I felt that was the only way to go about it in this busy party environment. Plus, let’s be real here…had I delved into a discussion about diabetes and devices, this drunk man probably wouldn’t have digested a single detail of my description. (Ahh, I love alliteration.) And another important point? He was damn right, my pump did look cool because of the lighthouse sticker!

But man, how much simpler it’d’ve been if I’d just been wearing my “THIS IS MY INSULIN PUMP” sticker on my pod that night.

I Dos and Don’ts: My Tips for Attending a Wedding with T1D

I can always count on diabetes to make life’s most joyous occasions just a bit more challenging…so I shouldn’t have been surprised when my diabetes threw several curve balls at me on my cousin’s wedding weekend.

There was the moment at the rehearsal dinner when I stood up to get something and hit my leg against a chair, literally knocking my pod off my thigh. (But I didn’t even realize it for another 20 minutes.)

There was the moment later that night, after the rehearsal dinner, that I discovered my blood sugar was high and that my mealtime dinner bolus probably was never delivered.

There was the moment the next morning that I realized my breakfast options were limited to a giant, carb-y bagel or a massive, sugary blueberry muffin.

There was the moment when I was with the bridal party – applying makeup, styling hair, and trying to calm the bride down – that it hit me that I had no idea what to do with my backpack (a.k.a., my diabetes bag) during the ceremony, as I had to be standing up there with the other bridesmaids during the vows.

There was the moment I psyched myself out big time by wondering what the hell would happen if I passed out in the middle of the ceremony in front of all of the esteemed guests.

There was the moment I went a little too overboard on drinking Prosecco at the reception…and a few more cocktails at the after party.

There was the moment I woke up the next day with a high blood sugar and hangover from hell.

Needless to say, there were quite a few diabetes “moments” over the course of an otherwise beautiful weekend. As a result of them, I’ve decided to document some wedding dos and don’ts for myself, as this won’t be the first time this year that I’m a bridesmaid in someone’s wedding. Here’s my unofficial roundup.

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Showing off my decked-out pod at the wedding reception.

Do have plenty of back-up supplies. I got lucky this time around because my parents were a phone call and short car ride away from me when my pod fell off. I should’ve been carrying insulin and a spare pod on me, but at least it was within my mother’s reach at the hotel room.

Don’t sweat the small stuff. Things happen, and I’ve got to learn to accept them more quickly so I can better adapt to a situation. It took me awhile to forgive myself for the pod snafu at the rehearsal dinner, and if I hadn’t snapped out of it, then it could’ve ruined the night for me.

Do try to plan meals when possible. I knew that I should avoid a high-carb breakfast on such a busy morning, but I can’t resist a blueberry muffin, especially when it’s one of two breakfast options I had. I wish I’d thought to bring food that had accurate carb counts on it so I could’ve had more predictable blood sugars throughout the day, but I did come back down from the sugar-induced high relatively promptly.

Don’t forget that family and friends are willing to help. My “problem” with my backpack was solved by handing it off to my boyfriend about 30 minutes before the ceremony started. I didn’t miss any photo opps with the bride and bridesmaid during the hand off and I felt better knowing it was in good care.

Do remember that time flies. I had to keep myself in context; after all, I was standing up in front of the guests for less than 30 minutes. I knew there was relatively little insulin in my system and that I was starting to level out somewhere in the 100s by the time the ceremony started. The odds of me passing out were slim, and I needed to give myself that reality check.

Don’t forget to drink plenty of water. Duh, that’s drinking rule #1! I’m embarrassed to admit that I maybe had two glasses of water during the entire reception and after party. It’s not like there wasn’t water available, so I don’t know what I was thinking. But I do know that I was incredibly lucky to hold onto stable blood sugars well into the night, despite my lack of hydration.

Do have a plan for hangovers. Sometimes, they happen, and they’ve got to be dealt with swiftly. After some consultation with my mother, I set a temp basal to fight against my high blood sugar and downed glass after glass of water. By early afternoon, I was feeling much better. And even though I had a bellyache, I didn’t yak, so I suppose that’s a silver lining.

And one extra “do”…do have fun with diabetes devices! I decked out my pod in a Pump Peelz sticker that had an image of the lighthouse we were near on it. Sure, it wasn’t visible to anyone but me (and a few people I couldn’t resist showing), but it still made me feel extra special and coordinated with the wedding venue. Sometimes, its the little things in life.

So besides taking several valuable dos and don’ts away with me from this weekend, I’m also walking away with a wonderful first experience as a bridesmaid to a cousin who’s always felt more like a sister to me. When it comes down to it, my irritation with diabetes doesn’t matter – it’s the love and celebrations I felt all weekend long that do matter.

Trying to Stay in the Loop with DIY Diabetes

I can’t remember exactly when I heard of “DIY diabetes”, also known as “looping”. It may have been at a conference a few years ago, or maybe I saw something about it on social media. Either way, it seems to have totally blown up as more and more people with T1D are looping.

TRYING TO STAY IN THE LOOP WITH DIY DIABETES
Are you a Looper?

Before I talk about it more…a brief definition of looping. Loop refers to a kind of automated insulin delivery system. According to what I read about it on diaTribe, Loop systems are open-source and DIY, meaning that T1D Loopers download an app for the iPhone that communicates with a device that also communicates with compatible pumps and CGMs.

If you’re confused, don’t worry – so am I. There’s a number of moving pieces involved with Looping that make it daunting and difficult for me to keep up with as the technology changes. But the ultimate goal of Looping is what has me interested in it. Looping is supposed to help improve time-in-range, particularly overnight, because it does a lot of the thinking for you and ultimately makes life with diabetes easier. And I’m all for that.

Looping’s been popping up on my social media a lot lately because at the end of April, the geniuses behind Loop announced that compatibly with the OmniPod for the first time. (Previously, Looping was only available to Medtronic folks.) On what feels like a daily basis, I notice more people on my social media platforms – particularly Instagram – who are Podders that have made the decision to start Looping. The common denominator with many of these individuals, besides being Looping Podders (sounds like a wacky band name) is that they’ve found great success in doing so. It seems like each person spends 90% or more of his/her time in range, encounters fewer low/high blood sugars, and wastes less time worrying about diabetes in general.

All of that sounds too good to be true. Of course my interest is piqued by such incredible results, and of course I’d love to dive right into Looping and see whether it’s a good fit for me. But the reason why I don’t is simple…I just hesitate to trust new technology.

Technology can fail. Plain and simple. All operations for Looping with the OmniPod take place on the iPhone. That means that the PDM is rendered useless. What happens if I lose my cell phone? What if the battery dies when I need to bolus? What do I do when I upgrade to a new phone? There are so many questions I can think of related to the phone issues alone, never mind any other potential problems. Put simply, the unknowns – the “what ifs” – terrify me so much that I can’t help but be skeptical of Looping.

But this doesn’t mean my interest goes away. My curiosity about Looping is stronger than ever. The DIY element is frightening, but the rewards could be greater than the risks.

The only thing I know for sure is that I won’t even attempt to Loop until I have a conversation with my endocrinologist about it. Together, we make decisions about my diabetes care and treatment that we both feel are safe and right for me. I’d love her opinion on Looping to see how much she knows about it and whether she has any patients who use it. Until I talk to her and gain more information from other Loopers, it’ll just be something that I cautiously admire from afar on social media.