Do you remember your life before diabetes? That's getting more and more difficult for me. I spent 24 years without diabetes. Sometimes I look at photos of BD years and think about how easy my day is.
Today I wonder how much I remember diabetes before I begin using automated insulin delivery (AID). Eight years have passed. An 8-year loop. Happy Loop Ellie to me! Diabetic BL (before the loop) felt heavy. And it's scary. I remember the months right after I started the loop and how many things felt. Remember better sleep and increased energy. I remember how light I hadn't experienced since I was diagnosed.
That's my “normal diabetes” right now. Life with Loop is easier than Life Bl. On the very rare occasion when I had to diy diabetes, it was a shock because I learned how bad it was for diabetes. It's embarrassingly bad.
There were some harsh differences at the time between people who used DIYAP and those who used interoperable devices in the market, but today the differences are less. Aid systems are not just for those who choose to build their own. It's great to know that there are commercial systems available these days. You can debate which algorithms are better, whether commercial or open source systems are better, but I think that's a bit pointless. If people have less diabetes and feel happier, better and less burdensome, it doesn't matter what they are using. Your diabetes; your rules!
Eight years later, and despite the commercial system I have access to, I decided to continue using the same system I started eight years ago, the loop. The change I made is the device using loops. My pink medtronic pump retired with an orange link (which was clearly in a pink case). Instead, they use a single device, Omnipod, rather than two that further simplifies diabetes. It also means you don't worry about the operation of the Medtronic pump, and you'll be carrying bulky supplies while traveling.
All of these may seem trivial, but add up.
My decision not to move into the commercial system is based on several different reasons. I've always said that I don't move to anything that requires a trade-off that would undermine any of the conveniences of the loop. I've been feeling awkward from my iPhone or Apple Watch since 2017, but have refused to let it go. In my opinion, strangling my pump out of the bra or carrying additional PDMs to the bolus was a step backwards. Of course, this is now available in several commercial systems. It's very cool to see a diabetic friend who has access to what makes diabetes a little less invasive.
The customizability of the loop means that my target level is set by me and me alone. The lower limit of the commercial system is not something I like. I was not prepared to sacrifice the flexibility of personalized configurations for a one-size fit approach.
I understand that having a commercial system has a professional. Using the troubleshooting helpline is certainly positive to provide customer support on calls. It's stressful to know that annual loop rebuilding (always inducing anxiety…well, technology?) will have stress in the future. And worry about the update breaking something that's fully functional.
Still, for measurements for measurements, the decision to continue using the loop was very simple.
We thank the magicians behind open source technology for their daily glow and generosity. I'm grateful to the algorithm developers, those who wrote step-by-step instructions that I can follow. And I am very grateful to those who have tried to make their devices more affordable. I think I really hope that device makers will help make diabetes simpler and easier to put diabetes burden on them. However, in my opinion, there is no denying that user-driven development has actually been more successful in facilitating diabetes. These magicians know firsthand what it means to be back from diabetes.
Ultimately, my goals were always clear. I want diabetes to infiltrate as few as possible into my life. I continue to use Anubis even when the G6 transmitter doesn't have a pocket-free cost. Using Anubis means changing the sensor when the factory settings claim, not when it's a 3 month period, but six transmitters are uneven. look? There are fewer diabetes tasks. Less diabetes. That's the overall point. (And that's why I hesitate to move on to the G7.)
When I tried to quantify how little diabetes I was, I went back to Justin Walker and returned to my presentation at DDATA in the Diabetes Mines in 2018, saying, “Wearing an open AP saves me about an hour a day without diabetes.” Eight years later, that was 2,922 hours when I came back. It's almost 122 days. Here it may take 30 seconds and it may take a minute. But it adds up. And that time is better than diabetes in my pocket.”
And here we are. Eight years later. I have diabetes in the background and as much as I can with the tools I have available. I don't really like diabetes yet. I still really really resent it takes time and brain space, and I still want treatment from all of us. Damn, we deserve it.
But in the meantime, I know how lucky I am to lean on what the community has done for the community and benefit from that knowledge and expertise. Don't bet on the T1D community. We know exactly what diabetes does from us every day. And exactly what you need to return some of that.
More about my experience with the loop
My first loop post
At that time I scared hell from the medical professionals.
Early stages of learning from the loop
Loop and sleep
What does the holiday loop look like?
The year of the loop
A list of how the loop changed my diabetic life (and it's all relevant today!)
Postscript
As always, I know my privilege very well. Access to aid is nowhere where it should be. Looking at the Australian context, insulin pumps remain out of scope for many people with T1D, thanks to an outdated financial model. Remember the consensus statement developed last year? And across our borders, technology access is very different. As a diabetic community, we are not all beneficiaries of this technology until all people with diabetes have access. And it starts with affordable, uninterrupted access to the most sophisticated aid systems, preventive treatments and cell therapy.
