THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Saturday, August 31, 2013

#StripSafely in the Midst of Crisis

We've been dealing with a private crisis.

I'm not going to sugar coat it...and I'm not going to talk about it either.

I haven't been around, but just know it's not you -- it's me.

Well, not really. I mean it's not ME. Like, I'm not to blame or anything. It's not like I "did" anything wrong...I'm not in trouble or going to jail or whatever. That said, I do think things like inappropriate conduct, harassment, and stalking behavior should be grounds for significant punishment. But I'm not talking about it. 

Back to the here and now...considering my relationship with you, Dear Reader -- it's not you, it's me. That's all I'm trying to say.

I've spent the past 8-ish weeks dealing with aforementioned Puzzle Incident. During which time, my life has slowed down. Way down. Like almost-to-a-complete-hault-down. You wouldn't know it from the outside. Or, maybe you would...but not enough that you'd mention it.

We ended summer with trips to the water park and sleepovers. The girls started school...which means I met new teachers, went to a 504 meeting, and talked to the class. We're getting back into our school-year routine, and I even made GF mini-pies. (Hello? I couldn't leave that out, and YES...I plan to share the recipe. #winner!)

Guess what?

Dia-flippin'-betes and Celiac didn't go anywhere.

In case you were wondering, they didn't spontaneously decide to take a few weeks vacation just because my brain needed to focus on something else for awhile.

Nope. Still here.

The good news is that, while my life has been on "hiatus", the FDA (finally) approved an official definition of the term "gluten-free", and passed a new Gluten Free Labeling Law. {Further reading HEREHERE, HERE, and HERE.}

The bad news...

Glucose meters *STILL* do not meet regulatory standards. And you know what else? TEST STRIPS CAN BE UP TO TWENTY PERCENT INACCURATE!

Ummmm...HELLO????

Insulin keeps my daughter alive. Too much insulin will kill her. Too little insulin will kill her. In fact here's a picture of roughly how much insulin keeps her alive from one day to the next:


So...how then, does one go about figuring out what amount of that little drop should be given at any minute of the day since a smidge in either direction can have drastic results?

Well, I'm glad you asked!

With a glucose meter and test strips that aren't required to be super-duper accurate, of course!

Nice.

Ain't nobody got time for dat.

Meri's letter really drives the point home ---> Read it.

Yeah...so...ANYWAY...there's a *BIG* meeting on September 9th. Like, really big. And we need some lawmakers in attendance.  Bennett is going...and if anyone will tell them like it is, Bennett will! But you need to tell Congress how important this issue is to you too.  Please take a few minutes to locate a few email addresses, and send a letter to your state leadership.

And...while we're on the subject, please sign THIS petition to tell the FDA they cannot ignore diabetes.

I've been trying to ignore diabetes for a few weeks.

It doesn't work.
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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.