Monday, September 15, 2014

D-Parody Special Request: So High Today

As a thank you gift for anyone donating $100 or more to my campaign for Diabetes Hands Foundation, I am offering you the opportunity for you to request a song for me to parody. My first $100 donor asked for Carole King's "So Far Away." Here you go, sir. Enjoy.

"So High Today"
a D-Parody of Carole King's "So Far Away"

So high today.
I can’t make my blood sugar stay in one place anymore.
It would be so fine to see a nice 1-0-4.
It doesn't help me when you question why today.
I don’t need your judgment when I’m not feeling good.
Now you’re asking me to order Chinese food.
Oh how I wish I could, but I’m so high today.

One more ride on the glucocoaster skyway.
I can't say it’s really anything new.
If I could only work this day out my way,
I'd rather spend it being ninety-two.

But I’m so high today.
I can’t make my blood sugar stay in one place anymore.
It would be so fine to see a nice 1-0-4.
Did my insulin spoil? I’ll change my vial today.
Yeah, oh why today?

Travelin’ around sure drops me down lower.
Nothing else to do but exercise.
I sure hope this rage bolus don't come to own me.
There's so many variables I've yet to analyze.

Cuz I’m so high today.
I can’t make my blood sugar stay in one place anymore.
It would be so fine to see a nice 1-0-4.
You know, I can’t be sure why I’m so high today.
Yeah, oh why today?
I’m so high today.

Tuesday, September 9, 2014

D-Parody #2: For the First Time in Forever

"For the First Time in Forever"
(a D-Parody of "For the First Time in Forever" from Disney's Frozen)

I was 18 years into D life,
A wannabe Mom and brand new wife.
Who knew there was this huge community?

First I stumbled to DMine,
Then TuDiabetes came to find.
It was like they're talking right to me.

There were actual real live people.
It felt totally strange.
But wow, was I so ready for that change!

'Cause for the first time in forever,
I felt truly understood.
For the first time in forever,
This disease brought something good.

Don't know if I was inspired or hypo,
But I was somewhere in that zone,
‘Cause for the first time in forever,
I didn't feel alone.

From the very first time that I logged in,
Created a profile, commented,
I could tell this was a special place.

Though nervous to meet them at events,
Some of them famous advocates,
I'm sure I stuffed some glucose in my face.

But then we laughed and talked all evening,
Which was totally bizarre.
Nothing like the life I'd led so far.

For the first time in forever,
I am living out my dream.
I took steps to be a mother
By bringing down my A1c.

And I know it sounds totally crazy
to believe they’re all my friends,
But for the first time in forever,
Someone understands.

For the first time in forever,
I’ve a chance to change the world.
And like I’d dreamed of for forever,
I have a darling boy and girl.

And we will do great things together;
We’re no longer on our own,
'Cause for the first time in forever,
For the first time in forever,
We are not alone.

Wednesday, September 3, 2014

D-Parody #1: Treat More Moderately

"Treat More Moderately"
(a D-Parody of Jewel's "You Were Meant for Me")

I hear my Dex, it's 3 A.M.
Get out of bed, go to the kitchen.
I eat some toast, I eat some pancakes, too.
Finished off the maple syrup, I left none for you.

I break open a box of tastykakes.
I leave the wrappers here all over the place.
Smear Nutella on the counter,
And the pantry door,
I don't think I'll have a problem with that low anymore 'cause

Carbs last for so long
Even after they're gone----
When I'm low, I panic and eat,
And soon I know I will see-----
I should treat my lows,
Treat more moderately.

I nudged my husband, he was out for the count,
Took a tiny bolus, just a random amount
So I logged onto Twitter, it was more bad news
More lows overtreated, bodies abused.

Checked out my Dex and the climbing trend,
Facebooked an update and reached out to a friend,
But she was low and I was high now,
And I was feeling oh so bad 'cause

Carbs last for so long
Even after they're gone----
When I'm low, I panic and eat,
And soon I know I will see-----
I should treat my lows,
Treat more moderately.

I go about my business, I'm doing fine,
Trying so hard to stay between the rumble lines.
Same old story, not much to say,
Highs and lows happen everyday.

I brush my teeth, I put the cap back on,
I know you hate it when the kitchen light's on,
I count the carbs up and turn the sheets down
Take a deep breath and a good look around.

I check my number and hop into bed.
I'm half alive but I feel mostly dead.
I try and tell myself it'll all be alright.
I just shouldn't eat anymore tonight 'cause

Carbs last for so long
Even after they're gone----
When I'm low, I panic and eat,
And soon I know I will see-----
I should treat my lows,
Treat more moderately.
Yeah, I should treat my lows,
Treat more moderately.

If you liked my video, would you be willing to donate to the Diabetes Hands Foundation, a California 501(c)3 nonprofit whose mission is to make sure that no one touched by diabetes has to feel alone?

Monday, September 1, 2014

D-Parodies for DHF

I am once again raising money for my favorite charity - the Diabetes Hands Foundation. I have challenged myself to raise $1,000 and parody four songs over a 30 day campaign, rewriting the lyrics to some fun songs to have them be about diabetes and filming music videos for each song. I hope they'll amuse you. I wanted to channel a little Weird Al, who has always inspired me and made me laugh.

what song will this be? we shall see...
When I was growing up with diabetes, I didn't know anyone else who could relate to what I went through everyday. When I was grown and wanting so desperately to become a mom, I discovered the programs of the Diabetes Hands Foundation and found a place where I belonged.

I reached out my hand and people offered theirs. I found that I simultaneously had so much experience to offer and so much more to learn. Audrey Hepburn famously said, "As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others." As incoming chair of the Board of Directors(!) for DHF, I already give of my time, talent, and treasure. I want to use my hands for pulling others in, helping others up.

With your support, we can improve our programs, fund our operations, and help more people touched by this relentless and difficult disease.

I will be releasing music video parodies throughout my 30 day campaign. I hope you'll laugh, I hope to embarrass myself, and most importantly, I hope you'll take the opportunity to support what we do for people.

Let the fun begin.

Online fundraising for D-Parodies for DHF

Thursday, July 31, 2014

Second Screen, Second Sight

My husband and I are among a growing number of users implementing grassroots remote/second screen monitoring of blood sugar values, trends, and patterns. It's called CGM in the Cloud.

I have a lot to share about this concept in the coming months. Expect to see an interview with Hubster about the changes he's made to the existing framework that will allow for future wearable tech, our favorite blood sugar pattern management apps, and even future CGM technology that's coming down the pike to provide us our data in different formats.

It's my data. If I can see it in a format I can understand and I can make inferences from it, I can manage my numbers better.

Case in point.

I've been seeing higher numbers creep up on me first thing in the morning. My fasting blood sugar has been "floating the rumble line" as I call it and twirling itself around my upper threshold. If I forget to bolus insulin for my morning coffee, I'm riding much higher by breakfast. Many mornings, if I look back, I might notice that my numbers stayed steady in a safe-for-sleeping range followed by a gradual bump midway through the night. That bump is a bit murky for me sometimes. Hard to see the time, the values, the minutiae.

I'm supposed to be able to dive into that data and evaluate what could be changed. Otherwise I wait three months of seeing this over and over again before discussing it with my diabetes educator or my endocrinologist. One of them will lean toward the screen and stare at a tangled mess of lines and determine the same thing I should be able to determine myself...if I examine the data in a way that makes sense to my brain.

Do you know what makes sense to my brain? Numbers.

Using Nightscout, I can scroll through my night and pinpoint exactly when I had my first out-of-sync data point because I can see the numeric values and they are timestamped. At 2:40am, the first reading that wasn't between 129 and 132 popped up: 134. Not concerning in and of itself. 25min later at 3:05am, it was 139. Again, not worth a great deal of worry. Except at 3:14am, 144. 3:27am, 152. 20min later 174. By 4am, 176. This is how a blood sugar creeps.

What is important to understand is not that any one method of reading this data is better than another, but that this particular method is a platform for delivering that data to me in a way that makes sense to how I personally process the data. Dr. Ponder, whom I admire and support, can read his graph lines with a kind of precision that I cannot. But I can understand when I see a 130 creep to a 176 from 3am-4am. And I can make an adjustment by shifting that pre-dawn basal rate back an hour. Now this is what I see when I look at my Dexcom screen:

This is taking SMBG (self-monitoring of blood glucose) to an empowering point. I am not manipulating my data. I'm understanding the language of my data.

And that's why I need you to take less time than it took to read my silly blog post and tell FDA that it's a great idea to fasttrack the regulatory process as they are proposing in the draft guidance for MDDS - or Mobile Device Data Systems - second screens like Nightscout and mobile apps that facilitate “the electronic transfer or exchange of medical device data from a medical device without altering the function or parameters of any connected devices.”

You have a story. You have a voice. Both are unique and powerful. FDA wants to hear our stories.