Jenny’s Journal:

I have to thank the late Anthony Bourdain for my giving me the desire to write and delve into the “in the box” management of diabetes here in the States which is controlled by many groups, such as FDA and the product/medication corporations.

He wrote a book called “Kitchen Confidential” which essentially dug into the dark side of the restaurant world and its deceptions compared to what the “public” sees and is assumed happens. 

It struck me that much of what we do as people with diabetes, in pursuit of our own healthy management might be coined “Diabetes Confidential”. Many of us, fed up with the system of “box management” that we get from doctors, and dare I say some CDEs, go our own route of management. And, honestly, why not? We live with this 24/7. There are no breaks. A doctor and most CDEs are not there at 2am when we have to decide what to do for a low BG, pump failure or whatever it might be that has us up. Often we have to navigate between visits to adjust for the pattern that we’ve seen appear in the past week or month, etc. 

In his Memoir he writes: 

“Do we really want to travel in hermetically sealed pope mobiles through the rural provinces of France, Mexico and the Far East, eating only in Hard Rock Cafes and McDonalds? Or do we want to eat without fear, tearing into the local stew, the humble taqueria’s mystery meat, the sincerely offered gift of a lightly grilled fish head? I know what I want. I want it all. I want to try everything once.”

Living with diabetes, we want more, we want to be able to try a lot of things in life and not have to feel like we are stuck following approved rules that might not fit personal need. We need products that meet individual needs and keep us healthy in a safe way. His statement struck me because we have to get comfortable with starting to bring to light management strategies that are not “taught” out of a book.  It speaks to me about really defining what people with diabetes are doing when they take the less commercial path. Thankfully, for those who have chosen a more DIY path, there is help. There is the Diabetes online community (DOC) and a lot of people donating time and resources to develop hacks to our current products. These innovations are off the beaten path to improve management, so to speak. These people are not “eating from the Hard Rock Café” menu of choices, but instead they are deciding to take management to another level – with or without the assistance of the “in the box” clinical office *.

I think we are defining an era of people with DM (and some Endos and CDEs – Integrated Diabetes Services) who think outside the box as warriors. One of the best examples being the WeAreNotWaiting movement.

This movement has brought together some of the smartest minds from across the globe to help make life with diabetes more livable.

We are starting to explore the politics and history of diabetes technology and why our personal management is being controlled by people in organizations that are not there at 2am to help.

I have had type 1 diabetes for 30 years now. 30 years!! And in the past 5 years, there has been the most movement as far as technology and assistance with management that I can see. I understand the need to have medications and medical devices “approved” and cleared for use so as to ensure they are producing effective results in a safe manner, I do. We have to consider that the oldest medication for diabetes, insulin, is widely used. However, education around use is vague and more of a “test it out and see how it works”, often without rules of “testing” provided to the user.  We, the users of insulin, know that it works a bit differently for each person who uses it. Response time is different, dose is different, how it works with food, activity, illness, etc. is different and we have to navigate that all for the most part with personal experience – and, what I tell people – good notes along the way.

People with diabetes and their caregivers are responding to this awareness of needing to think outside the box by wanting more, doing more and looking at innovative ways to get a helping hand using our technology advances. We have to choose a path that isn’t paved. Thank goodness for skilled software engineers and pioneers in diabetes, since most of this is happening without regulation in the DIY diabetes community. Closed loop insulin pump systems such as OpenAPS and Loop are some of these innovations that step outside the set rules for use of current products.

Integrated Diabetes Service clinicians have tried a lot of different products and therapies over the years. All in the effort to be able to improve our own management as well as provide user insight to help educate our clients. We all have recently started to use the Loop insulin pump and wish there was a way to bridge the gap between what it offers as an “unofficial” product and what is available on the market today.  There is so much that could be done to improve the health of those with diabetes if innovative products could be approved for all. For me, Loop has given a behind the scenes partner to my management that I didn’t realize I’d appreciate. There is so much inner monologue to what we consider in our day to day, and Loop has really helped clear some of that out.

I’d encourage everyone with diabetes to get active in some way in the diabetes community. Bring light to what we need, educate where you can to clear up misconceptions about life with diabetes and advocate for those who can’t do it for themselves.  Pay It Forward.

* I am not by any means against diabetes education. Far from it – I wouldn’t be an educator if I didn’t believe it was so important! But we do need to start to merge our communities – those with diabetes and those who help PWD (educators, doctors, FDA and the companies that produce our technology such as pumps and CGMs). The more we work together, the better managed we’ll be, the healthier we’ll be and the less stress to the healthcare system there will be.