Diaversary and our #T1Din3- "Bolus for Candy"

Halloween is our (first of two) diaversary. Spell check is having a hard time with the combination of diabetes and anniversary. That is OK spell check I know how you feel.

We have felt strange about it too, every year. I have found writing about it helps.

We haven'e always the same way about diagnosis anniversaries. It is like our diabetes has varied. At first we were still a little raw and then shortly after that first diaversary we got a second diagnosis and it was as raw as the first.  By now we are so far into the "new normal" that it is fairly close to simply normal.

Still Halloween is our day and Halloween brings out different responses in type 1 families. Some don't trick or treat, some fret about it, some buy back candy and then there is us. We eat the stuff. On nurses orders.

JDRF has a hash tag fest going on on Twitter, #T1Din 3. The idea is to share a T1 thought in three words. There is even a "Flat Stanley" thing to give diabetes the finger. We are all fairly sure it is "the wrong finger." (Not to telegraph one of our #T1Din3 offerings or anything.)

So anyway in honor of Connor getting sprung from CHOP our three words are, "Bolus for Candy."

We had great support at that first diagnosis. Here is a link to the story of Connor's diagnosis and the great care we received from our nurse at CHOP. She is the one who sprung him a day early so he could trick or treat and gave him instructions to eat the candy (as part of his meal plan.) 

A Halloween Re-Run: Eat the Candy.

Here is a YDMV bit from the YDMV WABAC machine. If you remember the reference you are both my hero and old like me. As Halloween approaches I once again offer my feelings about carb based holidays and kids with type 1: Make the joy of bing a kid first.

Kerri vblogged about Halloween candy, mostly snickers bars. It was like she has some kind of a Snickers obsession. Almost as if she was scared for life by having Snicker withheld from her in her formative years.

At the risk of further damaging my good reputation (I know you’re thinking “What reputation?” As if I could say anything else to make myself out to be more of a total boob.) I want to talk about Halloween candy.

Candy didn’t cause our kids to be type 1.

Candy isn’t going away because they are.

I needed to learn this but it is a lesson I learned early. I didn’t know much about diabetes; OK I didn’t know jack squat about type 1 diabetes before Connor was diagnosed other than there were some parents who had to give there kids shots every day and I thanked god I wasn’t one of them.

I hated needles. I still do.

I know a lot more now than I did then. Mostly I know not to spell out my fears for Murphy’s Law by being thankful for not having needles in my life. It is a sure fire ticket to Needleville.

Before he was released from Children’s Hospital of Philadelphia  I learned the lesson that candy didn’t cause Connor diabetes and his having it wouldn’t make candy go away. They were very clear - Kids with diabetes are kids and so are entitled to the joys of being a kid.

Candy on holidays is part of being a kid.

Candy based holidays are important and among the many things CHOP taught us were these two: He is trick or treating. He is eating his candy (as part of his scheduled carb intake.) They released him a day early on the morning of Halloween with solemn and serious instructions to trick or treat that night.

So I am here to say don't let your kid grow up and become some kind of a scared by Snickers bar Halloween freak like some vbloggers I know. Let them eat cake! Or in this case the candy! For Kerri I recommend the both in the form of a Crumbs' Snickers cupcake.

Be a kid with diabetes.

Kid first, diabetes second - deal with the diabetes so they can be kids.

News on LGS

Medtronic Receives IDE Approval to Conduct Aspire In-Home Study of First Insulin Pump with Low Glucose Suspend for US Market

"People Who Get It" and TEDx #TwoBits

Over at humaBLOG there is a post about having someone around who "get it" (it being diabetes.) I like that mom caught onto dueling hypos, but more I like the idea that we rely on each other in families and online communities.

Speaking of relying on communities, we rely on the scientific community to make living with diabetes better. TEDx DelMar shared a lot of what that community is up to. ASweetLife has a glorious two part tour of the presentations, here and here.

AP by Any Other Name & Experts on CGM #TwoBits

Two Bits form around the DOC:

Thanks to Scott Strumello for alerting me to this article with this great definition of 

Artificial Pancreas: "To merge three key aspects of type 1 diabetes management - human behavior, physiology, and technology." Way to include human behavior! Also way shorter than by post.


Another bit:

Apparently experts have caught up to what most PWD knew innately:
Experts Find Continuous Glucose Monitoring Beneficial in Maintaining Target Blood Glucose Levels, Now would someone please tell Scott's insurance? 

CWD Technology Conference in Philly!

What Penny Said:

CWD Technology Conference in Philly!

The Children with Diabetes Focus on Technology Conference 

is coming to Philadelphia in February 2012!

If you are even remotely close to Philly, I urge you to come!

Not only for the learning, but for me to meet you, o' faithful reader!

You can read about the conference here.

You can register for it here.

Come!

YDMV Interviewed as an e-Patient

I was happy to participate in a Medsider.com conversation about e-Patients. I am still not sure what an e-Patient is but I jumped in with Scott Nelson moderating e-Patient DavdeBronkart and Hugo Campos none the less.

I think that we in the Diabetes Online Community share issues with other online patient communities. In this case the issue we talked about was access to our individual medical data.

I think it is everyone mutual benefit if we take the time to learn about the issues others face and honor their struggles without offering trite solutions. Finding areas where we share concerns present opportunities to share insights on how to work to common goals.

I hope I did the DOC proud. The full round table conversation is on Medsider.com  

More Art Than Science

Support the diabetes arts: http://main.diabetes.org/goto/theBetesNow

More Art than....

... Science

New Video on theBetesNOW.com

More Art Than Science

Pump Hack II

From the news wire: Pump hacked by sniffing serial number.

http://www.cso.com.au/article/404909/lethal_medical_device_hack_taken_next_level

I get that hacking is seen as a noble endeavor, particularly by the practitioners. My gripe is that while there are significant computing shills involved the communications leave me cold.

Consider these headlines:


Lethal medical device hack taken to next level
Attacker sniffs insulin pump ID, delivers fatal dose

To me these articles project a cavalier attitude of, 'We play games with devices that keep people alive.'

There is an FDA process for reporting device flaws. That seems more useful and a nobel a channel of communications than general media. If reason for the hacks is to motivate change then the FDA is in a position to see that it happens.