Off the Dial

Grateful? Yes. Quiet? No way.

tslim_G4_with_TransmitterLast week, Tandem announced that the FDA approved their new T-Slim G4 Combo, integrating the pump with the Dexcom G4 CGM transmitter. Along with the Animas Vibe, that gives us two G4 integrated pumps, systems where you can see blood sugar readings on the pump screens. That’s great news.

The bad news (to quote this article from Diabetesmine):

Tandem’s new combo device is nearly obsolete on arrival given that last Fall, Dexcom rolled out an advanced algorithm that’s more accurate than its original G4 and that new algorithm is not included here. Moreover, Dexcom’s G5 direct-to-smartphone sensor was also just approved by FDA and will be available in the coming weeks — putting Tandem another square behind the latest tech. 

animas_vibe_features(The Animas Vibe is also G4 integrated and not compatible with the new G5. I have an agreement with Animas.)

This mixed news touched off an interesting social media conversation about appreciating what we have in terms of diabetes technology. Many people expressed excitement about how fast new gear is getting FDA-approval and coming to market.  Others – like me – expressed frustration.

A good example of the first way of thinking is this this well-written and thoughtful post  by Kari W. A few tweets throughout the day from others asked the DOC to just be thankful for what we have, that we’re “beyond blessed” with d-tech and what else could we possibly want?

The second is illustrated by D-Dad Greg Dooley writing that his 5 year old daughter’s Omnipod system failed three times. Three pod failures and a belly-up PDM.  A friend posting on Facebook that her son just switched to a T-Slim and one of the first comments is a warning to be careful. “The screen is delicate. (My daughter’s) dropped it and cracked it twice.” Our Animas Ping system hasn’t changed since 2008, but we still think it’s the best option for my son and stayed with it this summer when our four-year pump choice window opened up (don’t even get me started on that).

When I posted these examples, and that I felt d-tech lags behind other sectors, I was told the tech has come a “tremendously long way in ten years” and “what more did I want out of a pump?”

Really? Glad you asked!

I want an agnostic system where my pump talks to my CGM and my phone. I want to be able to program a temp basal in advance (say, for 5pm baseball practice tomorrow night) for any amount of time. I want a meter remote that can be used without cancelling pump communication with a CGM or a phone. I want insets and CGM sensors that stick better, with less irritation, that last longer and hurt less. I want more choices of what insulin can be used in what pump and a system that’s less susceptible to pressure and temperature changes or static. I’d love to change my alarm chimes & volume as easily as I change ring tones on my phone. Better brightness adjustment on meters would be good too. How about more accurate meters while we’re at it? To say nothing of the bionic or artificial pancreas (and of course we all want a cure, but that’s a different post…).

I don’t understand why I have to be just be grateful for the diabetes technology we have.  I’m inspired by We Are Not Waiting and CGM in the Cloud even though I do not remote monitor very often (and I’ve never used Nightscout). Without the push from these groups, I truly believe Dexcom would have left the Share cradle on the market a lot longer, and we wouldn’t be talking about the FDA approving the G5 this quickly. But, the moves ahead in CGM technology lead us to wonder why the pumps don’t seem to keep up speed. I know they’re different companies, I know it’s propriety, I know we’re told it’s complicated and medical, but it’s 2015. This thing should talk to that thing (hat tip, James Wedding of the Nightscout Foundation).

Of course, of course, of course, I’m grateful that we have access to insulin let alone all the higher tech gear I’ve talked about. I’m thrilled and thankful that we aren’t sharpening or boiling needles at home. But is this our standard? Be happy it’s not as bad as it was? Unless we push, things will not change. Unless we demand better, we won’t get it. Our kids and our community won’t thank us for not speaking up. They’ll be glad we did.

#DOCburnout2015 – Feel the Burn

DOCburnoutDay-640x461

Interesting blog prompt today from Diabetes Daily. They want our stories about social media burnout.

At this moment, I’m not really feeling the burn on social media, probably because I’m  starting to use it in a whole different way. I started my podcast, Diabetes Connections, a few weeks ago; I have additional Facebook and Twitter accounts to manage. The beginnings of things are always shiny and new, so it’s fun right now. I’m even using Facebook ads for the first time this week. It’s got me firing some cylinders I haven’t used before.

However, in my personal accounts, over the past year I’ve disengaged from a bunch of diabetes parenting Facebook groups.  I post and comment a lot less.  I love the support that social media brings. It’s helped me find my place in this community and I like to think it’s helping me help my son become more independent and confident in his diabetes management. But I also feel like there’s a lot of judging and comparing going on.

Parenting with diabetes is difficult, in part, because parenting is difficult. We all do this in our own way. What works for me may horrify you. Like those crazy energetic moms on Pinterest taking hours to create amazing school lunches. I make my kids’ lunches and they will never look like that. While DOC conversations are less about cutting sandwiches into fancy shapes, there still seems to be a competition over who can out-parent. Night checks, remote monitoring, what pump to use, what to do at school. These are all important topics for parents of kids with diabetes, but sometimes talking about them feels like wading into a minefield.

I’ve gotten a little fed up with the judgement and the “my way or the highway” crowd and this feeling that I’m not doing a good enough job. To that end, I’ve removed myself from a lot of groups and I avoid certain topics on my blog. I’m still happy to chime in with advice if someone asks, as long as they understand that works for me may not be best for them.

Honestly, I think so much of this comes from fear. It’s hard enough to think we might not measure up as parents – thinking we may not measure up as diabetes parents is terrifying, because we think our kids will pay the price. But we’re all just doing the best we can. We all love our kids and we all want what’s best for them.

For now, I’m going to keep to the few groups I’m in and concentrate on my real-life connections. When the social media burn gets to be a bit too much, a good in-person conversation (or a podcast interview!) brings me back to feeling connected, valued and heard. Things that can get easily lost in the noise online.