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How Does it Feel to Have Type 1 Diabetes…Again?

When you have diabetes, freeing your wellbeing from the disease is a dream-come-true, but what happens if your diabetes comes back? Anna Floreen, 30, knows all too well how being “cured” and then “not-cured” of type 1 diabetes can take its toll on emotional wellness.

Anna, who has had the disease since she was six years old, was one of about 30 type 1 diabetics participating in a Massachusetts General Hospital Beacon-Hill study, in which she tested the performance of a “bionic pancreas” outside the hospital. The device comes with an app that contains the system’s control software and algorithm and a continuous glucose monitor (CGM). You wear the CGM sensor/transmitter under your skin, and it streams blood sugar data on two connected infusion pumps, which either lowers or raises glucose accordingly.

On each of the five days she wore the bionic pancreas, Anna blogged her experience to thousands of visitors to the Type 1 diabetes online community, Glu. In her first post, she wrote, ‘The best part so far has been the lack of worry, emotional guilt, and shame that accompany all of us too often when it comes to decision-making between me and my ‘external organ’ pump that I’ve had a solid relationship with for over a decade.’

Since then, Anna explained how it feels to have diabetes again, noting, ‘The 24/7 of diabetes eats away at your mental aptitude and spirit. I would wear 10 sites on my body if it meant I didn’t have to deal with the constant thinking, and the embarrassment, shame and guilt that accompanies diabetes each day. I stare at my CGM and base my self-worth on a trending number graph! How crappy is that, and people don’t get it.’

So what happened when the trial ended, and the diabetes came back? ‘For days I was angry at diabetes again,’ Anna said. ‘I thought I would be much more motivated to take care of my diabetes, knowing the potential for it to be in phenomenal control. But it was like I was diagnosed all over again. I didn’t want to do anything.’ She added, ‘During the trial I felt so free. My brain was free of decision-making and dreading the consequences of my decisions. No more thinking should I have taken the subway instead of walking to prevent that low? Should I not have had that extra chocolate kiss at the holiday party? The lack of worry was amazing.’

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This entry was posted on July 8, 2013 by and tagged , , .
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