Sarah Kaye is a type 1 diabetic, diagnosed in 1988 at the age of 4. Known in the diabetes online community as the “Pump Queen,” Sarah has used or trialed most insulin pumps available, from her first pump, the Disetronic H-Tron+, to the Accu-Chek Spirit, Omnipod (old and new), Animas Ping, Medtronic Revel and 530G, Asante Snap, and her main love, the Tandem t:slim. In the end, though, she is truly just a diabetes tech geek at heart. She’s been a blogger for just over 5 years at Sugabetic with topics ranging from overall diabetes management to other things like pregnancy, hypothyroidism, and various opinions about diabetes-related products and gadgets. She’s also a mother to her amazing son!
Looking back at the technology that was available when you were first diagnosed with type 1 diabetes, in what ways would your life be different today if you were still using those same forms of technology, types of insulin, etc.?
Sarah: Oh, gosh. I was diagnosed in November of 1988. We only had an old Accu-Chek II glucometer (see image below).
There was no fancy logging machine that downloaded all your numbers into a fancy graph on your computer. Instead we just had an old account book that mom wrote her notes in, and we kept glucose readings and carb-exchanges in for our future diabetes appointments.
The meter used strips that could either be used in the machine or could be used alone and the colors of the strip after the blood was wiped off could be discerned against colors on the bottle to get a rough estimate of what your glucose was. Since we were on a sliding scale (an old method used for determining insulin doses), this wasn’t that much of an issue to get the exact number. Insulin delivery was as technical as using a calculator occasionally, but most of the time it wasn’t needed as foods were exchanges and insulin was simply drawn up in a needle with one unit for a certain number of exchanges or one unit for a glucose reading between one range, and two units for a readings between another range, and soon.
It was more simple back then, but things also weren’t as accurate as they are now. If technology hadn’t progressed, I don’t know if I may have had more complications by now or not. I know I probably wouldn’t be as dedicated to my control as I am now because I like to see my data and I like to be able to fine-tune as much as possible.
In so many ways, the technology we have today for managing diabetes reduces stress and anxiety, but with any technology there are malfunctions…what are the most frustrating glitches and malfunctions you experience?
Sarah: The most frustrating for me now is how everything I have has to be charged: my pump, my meter, and my CGM (continuous glucose monitor). Add that on top of having an iPhone and computer that has to be charged as well, that’s a lot of things to be charged. With everything going so “green” now, sometimes it would just be nice to go back to batteries where one battery lasted a whole month in a pump or 6 months in a meter, not a charge that lasts one week.
Also having pump failures like occlusions are never fun because you have an interruption of insulin—whereas with shots, you have insulin working all the time, which in my mind is good but frightening as well. I like being able to know I can disconnect or stop my pump at anytime. Of course, you also have things like site failures you have to watch out for too. Having a pump does help a lot in the grand scheme of things, but at time, it can cause just as much stress as having diabetes itself.
I rarely have glitches or malfunctions with my meter, and usually, if I do, I just pull out a backup meter. That is one good thing about technology progressing as much as it has – most meters don’t cost as much as they used to. Some, when they are new on the market are upwards of $100 or so. Now, they’re roughly $20. So, if your meter messes up, you can likely get another one cheap. It’s the strips that cost so much more.
You are known as the Diabetes Technology Queen for your experience with practically every insulin pump and glucose meter out there…what do you feel is still lacking in the world of diabetes technology?
Sarah: Well, I don’t know if I’d call myself that, but I have had a lot of experiences with insulin pumps and meters as well. Right now, what’s lacking, in my opinion, is a valuable and fully intuitive way to actually use all of this data you’re collecting.
Almost every meter and pump are designed to be uploaded, but most of the software is proprietary, so you can upload your meter in one place, and your pump in another, and your CGM in another, with the exception of Medtronic who has the ability to upload all of theirs in one place, provided you do use their entire system.
For those who don’t, they’re still faced with the mismatched reports. And, for the reports, most aren’t user-friendly. It’s one thing to have the best fit of diabetes device for you, but if you can’t understand or use the information in the reports or have to have a degree to decipher it, then there’s really no point in having it, in my opinion. Patients need to be empowered, and the right technology can help that in a big way if it works in every aspect of care.
As we both know, diabetes is 24/7 and there are no days off! In your own life, what helps face diabetes each day?
Sarah: You know, some days, I don’t even think I think about it. It’s a sort of autopilot thing that I know it’s something I have. Other days, it’s a pain in the tail. Sometimes, I want to scream and complain. But then, I think about it and realize that it’s okay to get frustrated, but it’s not okay to stay frustrated. So, I go and have my pity party for a bit and then I clear my head through walking or singing and then come back to whatever upset me to begin with and try to tackle it with a clear mind. Sometimes it’s the next day before I even try to figure whatever it is out.
Overall, it’s my knowing that if I don’t take care of my diabetes, I’m not just letting myself down, I’m letting my family down. They should never have to pay for how I feel because of diabetes through my actions or attitude, so I do my best to keep it in check, and ask for help if I need it.
Thank you, Sarah!