Diabetes Has Terrible Timing

I was going to title this blog post simply: UGH!!!!!!!!!!!!!!!!!!!!!!!!!!! But that wouldn’t be very explanatory and would do terrible things to the already weak SEO of my site.

Here’s the story:

I’m in charge of the monthly events for the professional organization whose board I sit on. I was hosting the summer networking event one evening. I was at the bar having just been served the Pub Exclusive: Great Lakes Buckin’ Mule Moscow Mule Ale and I pulled out my PDM to take a bolus for the beer and some food. The screen flashed on and then straight to a PDM error message to call customer service.

I knew the PDM would need reset, but was wondering if I could delay a bolus so I glanced at my Dexcom app on my phone. It was apparently the perfect time for a sensor error.

Let’s recap real quick: I’m running an event, I can’t bolus from my insulin pump, I can’t read my CGM and because of the PDM error I have no glucose meter either.

I excuse myself and dig in my diabetes bag for a syringe to take a bolus from my insulin vial. I find no syringes in my bag and have no idea why. So I go to the quietest place I can find (the event was in the bar of a hotel restaurant) and even then it was loud, but I called OmniPod customer service anyway. I spent 20 minutes of the phone with a sympathetic rep who took the information and tried to walk me through a reset using a “paperclip,” since I didn’t have a paperclip or safety pin or anything, I used my earring. The PDM screen blinked off, it went to the restart screen, blinked off again, restart screen, off, restart, off, restart… rinse repeat. We tried the earring reset again. Same result. We removed the batteries, waited, replaced them, and same result. That’s when the rep pronounced my PDM dead. “Okay, I’ll take shots until tomorrow and they’ll overnight me a new one,” I thought.

“Rachel, our records show that your PDM is out of warranty. We won’t be able to replace it, you’ll need to order a new one.”

I deflated. I had forgotten that I willfully allowed myself to run out of warranty in December in the vain hope that OmniPod would be releasing a closed-loop system. I had attempted to get an OmniPod DASH in order to do a review for DiabetesMine, but I couldn’t get my hands on one. It’s a long story.

“Do you have another form of insulin delivery?” He asked me. To which my automatic response was, “Yes.”

But did I?

I mean yes, at home I had a bag of syringes. But I hadn’t used Lantus in nearly 8 years and I was sure my Rx for it as a back up was expired. I couldn’t remember when the pod I was wearing (which was still dutifully dispensing basal insulin thankfully) would expire. Maybe I have my old PDM at home.

I got off the phone and needed to return to my event. Thankfully, my Dexcom had resolved it’s sensor error and I would just have to trust it for the rest of the evening and either not eat carbs or suffer the consequences. Throughout the rest of the evening, all I could think about was how my devices had failed me. And it made me angry.

I use this technology to enable me to do the things I want with less interference from diabetes. But somehow, I never have catastrophic failures of equipment when I’m bumming around the house or otherwise just hanging out nearby my back up supplies, with time to waste on the phone with the companies. No, these issues ALWAYS happen when I’m in the middle of something. Pods fail when I’m traveling to see family for the holidays. Dexcom sensors fritz out the morning of my friend’s wedding. No readings alert when I’m in the middle of a HIIT workout. PDMs die in the middle of events that I’m running. These are times when I want to be able to depend on the technology, but it fails me more often than not in those very moments.

I wonder if anyone has ever studied the dependability of medical devices in times of stress. It’s like the stress of travel, hosting or being a part of big things physically causes failures in my medical equipment.

I drove home with my blood sugar creeping up, fully intent on finding my old PDM to get a new pod going. I left my dead PDM in Brad’s hands to see if he could figure out anything with it. He too was unsuccessful in getting it restarted so he tore it apart to see if there was anything that was obviously broken. Meanwhile, I got a syringe and took a correction injection and went upstairs to my diabetes supply stash to find that the PDM I thought I had was not there. Instead, there was a box containing a first-generation PDM, which was incompatible with any pods that I had on hand. I sat right there on the floor of our hallway and finally cried. I was frustrated and angry.

Angry that diabetes was making me cry. Angry that my devices couldn’t keep up with my real life. Angry that I even had to deal with any of this.

I gave myself a minute and formulated a plan. I went downstairs and called the 24-hour nurse line for the Cleveland Clinic, who directed me to the answering service for the endocrinology department. I relayed my situation to the woman who answered and asked for an emergency prescription for Lantus. She took the message and let me know she would talk to the doctor on call and they would get back to me. If I didn’t hear back in 30 minutes, I was to call them back to check.

Brad came back in from the garage where he had been soldering pieces on the circuit board of my PDM, he declared it completely dead and deposited the internal pieces on the table. “Do you have a back up meter that works with your strips?” he asked. I said yes and that I should go get it. I returned to the upstairs hallway with my diabetes supplies and searched in vain for my Freestyle meter. It wasn’t there! It had to be there. Then it dawned on me. I’d taken the back up meter with me to London earlier in the summer and when we unpacked, I stashed it in my bedside table rather than putting it in its proper place.

I pulled open the drawer of my nightstand and sitting there, right next to the back up meter was the PDM I’d been thinking of earlier in the evening. Relief washed over me. I wasn’t crazy! My back up pump still existed. I fired it up, got a new pod on and as I went to call the answering service back, my phone rang. It was the doctor on call. I gave him the update and determined to follow up with my own endo the following day.

The evening ended so much better than I had anticipated, but there was still work to be done. My first step the next day was to call my endo and ask for a Lantus prescription to have in case of an emergency and then talk to her about maybe trying out some other insulin pumps.

 

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#RantAlert: WTF diabetes?!?! My technology has completely failed me tonight. My insulin pump completely died tonight while my CGM chose now to have a sensor error. Was I sitting at home watching TV and doing nothing important? Hell no! I was running an event, doing the things in life that I rely on this technology to make possible. After 20 minutes (in the MIDDLE of my event!) of troubleshooting with customer service, my conveniently out of warranty insulin pump is completely fried and I have to jump through the 500 hoops to get a new one. I’m angry! I’ve been pissed off a lot in the 8 years I’ve had diabetes, but never have I been quite this angry. Panicked? Yes. But not angry like this. Did you know anger raises blood glucose? Where is that cure we were all told is “only 5 years away”? Where are all of the treatments that reversed #T1D in mice? Nowhere. And dependable, advanced technology is just not available. #diabetessucks #t1dlookslikeme #angrydiabetic #omnipod #dexcom #dexcomg6 #duckfiabetes #247illness #novacations #technologyfail #cgm

A post shared by Rachel K (@probablyrachel) on Aug 20, 2019 at 5:54pm PDT

I took the next few weeks to evaluate my options and make a change. More on that later.