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.

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Favorite Things Friday: My OmniPod

One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

This month’s favorite thing is so damn obvious that it’s kind of shocking I haven’t written about it yet on the blog: my OmniPod insulin pump.

I love the friggen’ thing.

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My OmniPod PDM.

I don’t know if it’s because pumping works better for me in general over multiple daily injections (MDIs), or if it’s because the OmniPod is simply the perfect pump for me. Honestly, it’s probably a combination of the two. I love how convenient it is – I can deliver insulin any time, any place, I don’t have to worry about tubing getting caught on random objects, and it lasts me for three full days (of course, only if it’s working properly…I’d estimate that it does about 90% of the time). And I love that my dosages are so much more precise compared to how they used to be when I was doing MDIs. It gives me more control, knowing that I can dose in .05 increments according to my current blood sugar levels and carbohydrate intakes.

However, it is merely another piece of diabetes technology, meaning that it does have some flaws. Sometimes pods fail for the silliest reasons, such as coming into contact with static electricity. And other times pods don’t work for no damn good reason at all, without giving the user proper notice (in the case of bent cannulas, something I recently encountered).

But for the vast majority of the time, I love my OmniPod. I’m still surprised to how quickly I adjusted to the system – the first week or two was tough, but then it was relatively smooth sailing after that period. I think it was easy for me to get used to another wearable device, because I’d already been wearing my Dexcom for a couple years by the time I got my OmniPod.

Will I wear my OmniPod for many years to come? Or will I want to switch things up and give another pump a try? Only time will tell, but for now, I think I’ll stick with what I know best in the world of insulin pumping.

Any Pods to Spare?

Not too long ago, the following message appeared in the inbox of one of my social media platforms:

I’m so sorry to bother with something like this. I down to my last pod. And.. currently I’m having insurance issues.. I was wondering if there were any pods you could spare? I’m trying to search around. Or if you know anyone that does have extras? Or samples? I would hate hate to return to multiple daily injections.. I know u understand that. If not it’s ok. Sorry to bother. I don’t know where else to try apart from everything else I’ve tried

When I read it the first time, my heart immediately sank. The message was fraught with desperation, as evidenced by the typos and fragmented sentences. My gut reaction was to reach out to this person and let them know that everything would be fine, that there had to be an option out there that would help them.

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No pods to spare.

My next reaction, though, was pure skepticism. I’m not proud to admit that, but here are the facts that I was facing:

  1. I did not know this person. I tried to look at their profile to see if I could learn more about them, only to discover that it was private. I couldn’t see any of their information, other than a minute profile picture and numbers regarding their followers/activity.
  2. This person said they might be forced to go back to MDI. Personally speaking, if I ran out of pods and had to go back to shots, I wouldn’t like it – but if it was my only option, then of course I’d do it. I did it for something like 17 years before ever trying a pump. It sounded like this person wouldn’t want to do it, but…
  3. Most importantly, I do not have any pods to spare. I’m not sure why this individual thought that I did. It seemed like they’ve been asking as many people as possible on social media for pods, which makes me believe that they’re exploring the #omnipod or #podder hashtags. Regardless, I rely on regular shipments (every three months) from Insulet in order to maintain the bare minimum of pods that I need. And I can’t exactly give up “spare pods” that I don’t even have.

As horribly as I felt for this person, I had to take into consideration the facts that were in front of me, as well as the unfortunate truth that you can’t trust everything on the Internet. I told them that they should try to reach out to Insulet for assistance, and that I would be hoping for the best for them. I know that my kind words probably brought little comfort, but it was all that I had to offer to this total stranger.

The whole exchange haunts me. That’s why I want to know…

What would you have done if you were in my shoes?

Diabetes in the Wild: Beach Edition

I’d just settled into my beach chair, ready to crack open a book, when I spotted her.

She was walking as quickly as she could through the sand to help her friend carry a cooler, but not fast enough for me to miss the CGM on her upper arm. I sat up in my chair and wondered whether I should say something to her – after all, not all T1Ds are excited to encounter one another in the wild.

She caught up with her friend and grabbed the other end of the cooler. As they passed me, I saw she was wearing an OmniPod on her opposite arm. Not just any OmniPod, though: This one was decorated with some sort of emerald green design. I took that as a sign, a literal green light, that she probably wouldn’t mind if I said something.

“Nice OmniPod!” I called out.

She looked around, trying to locate my voice. My mother, who’d been reading the whole time and was unaware of a fellow T1D in our midst, shot a bemused look in my direction as the woman finally made eye contact with me.

“I have one too,” I said, pointing to my arm.

“Nice! I like your decoration. Do you have a Dex, too?” She asked, smiling at me.

“Yup – I’m wearing mine on my abdomen. I saw you had both and couldn’t resist saying something.”

“Well, we’ve got two OmniPodders over here,” She pointed to where she’d set up camp for the day.

Beaming, I told her that we had two in our group, as well. My mom offered her arm up to show her pod. I think that Mom was half entertained, half embarrassed over the whole exchange, so it made me happy to see her join in at the end.

The woman returned to her spot and we wished her well. Mom and I soaked up the sun for a few hours before deciding to pack up for the day. As we were getting our belongings together, a young woman approached us.

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Proud to wear my pod.

“Excuse me, may I ask what is on your arms? I’ve seen numerous people wearing that sort of thing today and I can’t figure out what it is, for the life of me!”

I was going to answer for the both of us, but my mom beat me to the punch. She explained that it was an insulin pump, though other people may wear different medical devices that look similar to it. The girl, seemingly appreciating the response, remarked that it was cool and that she was surprised to see so many people wearing them on the beach. She wondered out loud if she was missing out on some sort of trend.

“Yeah, all the cool kids have them,” Mom said, and we all laughed.

I don’t know how many people on the beach that day were wearing OmniPods – or any other insulin pump, for that matter – but I do know for certain that my mom is right: All the cool kids have them, and they’re much cooler for wearing them with pride in full view of the world.

How to Change an OmniPod

I decided to do something a little different and take video of how to change an OmniPod. Rest assured, though, that it does not take 22 seconds – it’s more like a seven-minute process.

Some things you’ll notice about my process:

  1. I fill my syringe with insulin and set it aside before deactivating my old pod. This simply means that I wear the old pod a little bit longer so there’s less of an interruption in time that I go without insulin.
  2. I use a pen to smack bubbles out of the syringe. Air bubbles will inevitably develop when drawing insulin out of a vial, so I find that gently hitting the sides of the syringe with a pen is the most effective way to get rid of the pesky air pockets.
  3. I prep my site with an alcohol swab, followed by a skin-tac wipe. The alcohol merely cleans the site, whereas the skin-tac makes the pod adhere to my skin better and longer.
  4. The new pod activates best when it is adjacent to my PDM. I always place my new pod to the right of my PDM. This helps the PDM register the new pod.
  5. It doesn’t actually hurt when I rip off an old pod. Not sure if you detected my dramatic facial expressing, but I was just yukking it up for the camera. It truly doesn’t hurt, especially if you just remove it in one swift motion.

So that’s it, the full process boiled down into 22 measly seconds. I admit that I kind of had fun making this video, even though the sight of myself sans make-up is semi-horrifying. But give me a break, I was on my way to a Pilates class! And let’s be real, diabetes isn’t always glamorous.