Tag Archives: artificial pancreas

Day 4 – “Changes” for Diabetes Blog Week

“Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?”

As I’ve been reflecting on this topic, for Day 4 of Diabetes Blog Week,  I’m finding myself angry, which is rare for me, but perhaps not unusual when I spend more time thinking about diabetes and emotions.  I’m angry because I started to come up with a list like many others have, for changes I’d like to see related to diabetes. Things like:

  • an artificial pancreas/closed loop system, so I could wear multiple devices and not have to check blood sugars all day and be constantly monitoring, adjusting, thinking  about my blood sugars.
  • better access to all devices and tools for ALL people with diabetes, all around the world.
  • better understanding of what it’s like to live with diabetes, greater compassion from those who don’t have it.

And that’s when I started to feel angry. Why am I (and many others) asking for so little?! We’ve been told for decades that a cure is only about 5 years away. We’ve been hearing that so long that’s now a joke in the diabetes community, which is disheartening. I think with the excitement that’s come from the #wearenotwaiting community, those who are taking the technology into their own hands and speeding up the closed-loop system’s progress, many of us have given up on, or set aside, the promise for a cure.

I don’t want to change the way I live with diabetes by wearing multiple devices attached to my body, with tubes, batteries, alarms, the need to add insulin and other hormones. I will, and will be grateful for the opportunity to have excellent control with little or no effort! Sign me up as soon as this is safe, affordable and available!

artificial pancreas, bionic pancreas, wearenotwaiting, CGM, insulin pump,

recent version of the artificial pancreas

But what I really want to see, the change I’d really like, is for my body to no longer have diabetes – to have perfect blood sugars, be able to eat what and when I want, and mostly, to not have to think or worry about if I’m low or high and take the time and energy away from other things I’d really like to be doing. I’m angry that I rarely dare to hope for this now, that I can’t quite envision this as a reality, and that I don’t hear many others speaking of this either. Perhaps with the excitement of these new technologies so close and so tangible, it makes sense that we’re focusing on that, but I don’t want to start to think that is the best change we can foresee when it comes to diabetes.

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Day Two – “Keep It To Yourself” in Diabetes Blog Week

Day Two Topic: “Keep It To Yourself”

“Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)”

This is a great question, and it made me think about what it is about diabetes that I keep from myself, because that is what I also don’t share with others. I’m pretty open about my interior life with friends and family, and quite public about my innermost thoughts (hence 2 blogs… including Luminous Blue 5 about my daughter during her journey with cancer, and my life after her transition.)

In 39 years of living with type one diabetes, with the tens of thousands of shots, urine and now blood tests, surprising lows, frustrating highs, calculations of carbs, and the impossible task of trying to account for ALL the variables and making the best guess of how much insulin to take…I rarely allow myself to feel the deep frustration, grief and loss that comes with this condition.

I was born with an overwhelmingly positive attitude, which I’m very grateful for, and therefore I rarely allow myself to even think about what life would be like without diabetes and all it entails. When I do, I cry. I can barely imagine the freedom that would come without the steady presence of diabetes, the 24-hour-a-day awareness of what my body is doing related to food, insulin, and blood sugars. I complain sometimes, about the frustrations of a low, of needing to wait to eat dinner when I’m hungry because I’m over 200, etc, but mostly I don’t. Mostly I live with it, handle it, enjoy my life to the fullest, and keep those thoughts and feelings waaay in the background somewhere….

I never went through the rebellious teen years of ignoring my diabetes. I have never just let it slide completely. I care too much about feeling good in my body. I hate how terrible I feel when my blood sugar is high. And, I do believe that every bit of effort I make may help me stay healthy in the long run, and so far it seems to be working, with (almost) no complications after all these years. (This is another topic I don’t like to talk about – the worry about complications…)

I don’t want anyone to worry about me, nor do I want pity, or even sympathy. That’s part of why I don’t like to go there – I believe that our attitude is a huge part of our health, and for me, acting healthy, looking healthy, and being seen as healthy are an important factors in actually BEING healthy. Much of the time I can even find gratitude for the ways diabetes keeps me grounded in my body, present and aware, and probably healthier than I’d be without it.

I can’t say I’ll never be telling these stories, because that’s part of why I started this blog, to have a community of people who understand the frustrations, the grief, the amount of time and energy that is spent on diabetes. But it’s not what I want to spend much of my time on. And, now that the artificial pancreas, and closed-loop systems are getting closer to being available to all of us, I can allow myself to start looking towards the day when I might simply have to be sure there’s insulin in the pump, and then forget about it for hours, or even days at a time!!

I am ready. WE are ready. It is time.

To learn more about Diabetes Blog Week, see here

To see all the other wonderful participants, see here.