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?

Why is it so Difficult to Order Life-Saving Medical Supplies_
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.

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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.

Supporting T1D Students with my #SensorSelfie

I’m taking a departure from a “traditional” blog post today to tell you, my dear readers, that you should consider celebrating a special holiday with me today: National Selfie Day! Before you roll your eyes at the mere idea of that, please keep reading to learn how participating will help support students with diabetes.

Dexcom has partnered with a nonprofit that is very important to me – The College Diabetes Network (CDN) – to help put some focus on the diabetes community and raise money. They’ve created the #SensorSelfie social media campaign to encourage people with diabetes to take photos of themselves proudly donning their Dexcom sensors.

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Here’s my #SensorSelfie, which wouldn’t be complete without my cactus shirt.

But what exactly do you need to do in order to take part in the campaign? There’s four simple steps to follow today, June 21st:

  1. Take a picture showing off your Dexcom sensor
  2. Post the photo to your Facebook and Instagram pages
  3. Use the hashtag #SensorSelfie and tag @Dexcom
  4. Tell ALLLLLL your diabuddies to do the same

For every post that uses #SensorSelfie today, Dexcom will donate $1 to CDN. Can you imagine how much money could be raised if you got all the T1Ds you know to participate?

If you’re looking for some more information on this social media campaign, click this link. Otherwise, what are you waiting for? Get to snapping, posting, and tagging!

4 Things That Make Traveling with Diabetes Easier

Throughout June and July, I’m going to be a travel fiend. I’ve got plans to travel by plane at least twice, and by car countless times. My trips will vary in length from just a couple hours to eight or nine hours. My head’s spinning just thinking about it, but I’ve got to get it together enough to think about how I can make traveling with diabetes a little bit easier. Given my past travel experience, I can think of four things that are absolute musts for me to take on any trip…

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Some of my favorite things to have with me when I travel.

4. Packing cubes
I always thought packing cubes were a total gimmick…until I actually started using them. I got a set of four for Christmas and they’ve really turned me into a much more efficient packer. They help me visualize the space that will be taken up in my suitcases, and what’s even better is that one of the cube’s is the perfect size for my diabetes supplies. I can fit 15-20 pods, a handful of CGM sensors, various device chargers, alcohol swabs, IV prep wipes, and more into the compact little cube. It’s so much better and more organized than the lame-o gallon-size Ziploc bag that used to store all my diabetes supplies for a trip.

3. My Myabetic backpack
I don’t know how I ever traveled with a purse as opposed to my Myabetic backpack. I can fit way more things into my backpack than I ever could put into my purse, and I love that there are specific compartments in the backpack for certain diabetes supplies. I know exactly where things I might need during a flight are stored, eliminating that panicky feeling I used to get when I would dig frantically through my purse in order to find my tube of glucose or my PDM.

2. Snacks and water
This is an obvious one. In my opinion, traveling with diabetes shouldn’t even be attempted without a refillable water bottle or at least two emergency-low-blood-sugar snacks. Even though it’s basically diabetes 101, I’m guilty of going places without water or snacks…and I’ve always regretted it. There’s not much worse than being in an unfamiliar place and unsure of where the closest food and water is located, especially when dealing with a blood sugar crisis.

1. My CGM
The most important tool in my travel kit is, without a doubt, my CGM. More specifically, my receiver is key, particularly when I’m traveling by air. I am religious about turning my phone off for the duration of a flight (just a weird paranoia thing, don’t judge me), so my receiver becomes my go-to whenever I want a status update on my blood sugar without taking out my meter and kit. It helps me handle any weird blood sugar spikes and drops that occasionally happen when I travel, and it provides me with a peace of mind that makes traveling with diabetes much more bearable.

 

The Amazing Flying CGM!

I reached into the front pocket of my sweatshirt. My tube of glucose was there, but nothing else…oh, shit.

My CGM receiver was gone.

“C’mon, pup, we’ve gotta find it,” I said to my canine companion, Clarence. He was all too happy to oblige as we sprinted back up the street to find my receiver.

It couldn’t have gone far…

My anxious eyes scanned all around our surroundings. Surely, my CGM’s bright pink case would pop against the dull browns, grays, and greens that painted the wet landscape.

Where WAS it?

Did I actually leave my house with it in the first place? Or was it still sitting atop my nightstand with my glucometer?

All I knew was that I’d better find it soon…or the chances of it getting run over by a car going at least 40 mph were very good.

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Have you ever had your CGM (or any other diabetes device) take off in flight?

Not here, not there…

Really, Clarence, it’d be great if you could help me look for it rather than pick up sticks…

Dammit, what am I going to do if it’s gone for good…

“AHA!” I triumphantly said out loud as I spotted the neon pink rectangle, nestled on a patch of damp earth. I tugged Clarence, who was just focused on sniffin’ and walkin’ as a young puppy would be, over to where my CGM was lying face-down. It was almost like it was too exhausted to continue on our walk.

Or perhaps it had just wanted to leap free from the confines of my pocket and fly high…just as my blood sugar had that morning. Who knows. I was just glad to have found it. Reunited, I tucked it safely into a different pocket – a zippered one, this time – and continued my walk with my happy puppy.

 

That Time Low BG Made Me Mad at the Moon

Low blood sugars in the middle of the night are far from pleasant. But they’re especially grating when you’re just trying to have a sleepover with your best friends and your CGM alarms loudly and urgently, rousing more than just me from a peaceful slumber.

Dammit, diabetes…you’ve done it again.

I don’t know how or why the low happened. I went to bed around 1 A.M. – we had stayed up late talking, drinking wine, and eating snacks – and at that time, my blood sugar was 156. You can’t get much better than that, and it felt even sweeter because we’d eaten pizza for dinner earlier in the evening.

I thought I’d be fine overnight. I might come down a smidgen due to the unit and a half I took to cover a slice of fabulous flour-less chocolate cake (utterly heavenly), but I made the assumption that I wouldn’t come crashing down.

I should know by now…never assume with diabetes.

So it happened at about a quarter of four in the morning – a witching hour, in my mind. I woke to the frantic buzz buzz buzzing of my CGM and quickly acknowledged it, then reached for my tube of glucose tablets. I did it as silently as I could, seeing as I was sharing the room space with my three gal pals. From what I could tell, my super slow glucose tablet chewing didn’t even cause my friends to stir. It seemed that I’d successfully managed to avoid waking anyone up, thank goodness.

I was just starting to fall back into a doze when the frantic low CGM alarm blared – BEEP beep BEEP beep BEEEEEEEEEEEP. Ugh! Upon hearing the first beep I snatched up my receiver, silenced the alarm, and scooped up my test kit and my phone. I tiptoed out of the bedroom from which we were all nesting to the living room, where I searched through my backpack for the Skittles I’d purchased earlier in the day…because that’s right, this 3:45 low blood sugar hadn’t been my first in the last twelve-hour window of time.

Digital Imaging Specialist
Low blood sugar in the middle of the night can make you feel weird things…such as anger towards the moon.

I plopped myself on the couch and started furiously chewing Skittles. I remember looking out to the sliding glass doors and to the balcony and to the parking lot and then finally up to the sky to see the moon shining brightly at me. It was positively dazzling, yet infuriating with its cheerful gleam. I wanted to yell at it to stop looking so happy. I muttered to myself, “this sucks,” and reclined a bit on the couch while I waited to come up from the low.

Everything was fine within 15 minutes. I was on my way up and could safely go back to bed. And again, I congratulated myself for not waking anyone up.

Or so I thought.

“Did anyone hear my CGM go off in the middle of the night?” I asked my girlfriends, approximately six hours after the incident when we were all awake and about to head out to breakfast.

“Yes! I was wondering what that loud, aggressive noise was,” said one. I cringed, an apology lingering on the tip of my tongue, when she continued with an “are you okay? Don’t worry about the noise, I fell back asleep soon after.”

I was grateful for her reassurance, but also for her concern. It felt good to know that ultimately, she didn’t give (apologies for language) two shits about the actual sound that my low blood sugar caused, she was just worried that I recovered from it okay and could get back to sleep soon after.

I smiled to myself. Hours before, I’d been cursing the moon for merely existing and dealing with an annoying, random low blood sugar. But now, I was cruising at a great morning BG and I was on my way to get a delicious breakfast with my gal pals. Diabetes has its moments, but I sure as heck appreciate it when it cooperates during the ones that matter most. So in hindsight, the 3:45 A.M. low was nothing more than a temporary annoyance, and I was just glad that the worst thing it did was interrupt my sleep (and mine alone) for 10 minutes rather than ruin actual precious time spent with my friends.