Impactful change

It was only yesterday that I was challenging us to not be so negative.

That doesn’t mean we can’t ask critical questions to find out the rationale behind things we don’t understand.

So with that, friends, I have to ask...

Has the American Association of Diabetes Educators lost its damn mind?

This week, AADE announced a name change. Anooooother naaaaame chaaaange.

This organization, whose leaders over the years I have defended as the champions of our patient community, many of whose members and leaders are my dear, personal friends, has made exceptional inroads over the last two years...changing the names of things.

I have tried to wrap my head around these big breakthroughs.

There was the news in 2018 about AADE changing the name of patient communities to “peer support communities.”

Okay, listen, several of us were angry about the tone of that one. AADE as a nonprofit does not own patient communities and we didn’t ask you to rebrand them, but fine. You want to be able to give our communities more clinical validity to your members and make them sound prescribable. I scoffed. Many scoffed. It was suggested patient advocates were blowing it out of proportion. That it would help see our support networks recommended to more of your patients. We agreed to disagree and we all moved on. Like good friends do when they disagree.

Then in 2019, the big news out of AADE was that they were rebranding CDEs (certified diabetes educators) as DESSs. DESCs? DESEs? I get it wrong every single time. Probably because it makes, quite literally, zero impact on the problems I see in treating diabetes today. It wasn’t even clear that AADE as a body had the authority to rebrand this certification.

I’ve seen justifications about how now physicians will treat educators like the specialists they are. Now they’ll respect the wide array of services these overworked and underresourced educators provide for people with diabetes.

Really? This is what the org charged with defending and supporting CDEs thinks it will take? I’m skeptical. This does not seem like an impactful change. Coincidentally, this was also when I began referring to AADE as AARE - the American Association of Renaming Everything.

Now it’s 2020 and there is a press release announcing the nonprofit’s rebranding to ADCES.

Friends, CDEs...you brave women and men who have been there for us in times of basal adjustment and prior authorization requests and “please help me figure out lunch at the office” times of need...who’s steering the ship over there? Blink twice if you need us to come get you. No questions asked.

I understand that we in the “peer support communities” aren’t the audience for these announcements. AADE/AARE/ADCES membership is. But please give some consideration to the optics of your decisions.

The population who needs you is increasing exponentially while educators’ capacity is imploding. Our access to you is impeded by restrictive reimbursement rules, especially those of us who live with T2D or Pre-Diabetes. Your numbers and geographic coverage are stretched beyond the support you are desperately trying to provide your patients. And the org specifically dedicated to supporting you in this mission seems perpetually fixated with rearranging letter magnets on a chalkboard.

A rebrand costs money. New business cards and office door plates for every formerly-known-as CDE. A new look and feel for your website. New logo marks, new brand guidances, new pamphlets, new conference identity materials.

Will a rebrand address a shrinking specialty in an exploding disease state where, more than ever, people with diabetes need your guidance and expertise managing ever-increasing-in-complexity device technologies and combination drug therapies? Where we need your steady hands to help us cover our ears to the detox-paleo-grapefruit-hot cinnamon-elimination diets in our Instagram feeds?

I’m trying to give the org, whom I have always supported and defended, the benefit of the doubt. To the world outside your bubble though, I’m sorry, but we don’t understand. Where is the news about the progress you’re making in supporting educators? Because the iceberg won’t care where you stack the deck chairs.

Much love,
Matilda
Medusa
I don’t know anymore

Peace be with you.

It may sound odd coming from me—an atheist—but much of what I learned about community started with the priests and pastors I worked with in the more-than-a-decade I served in music leadership positions for the Catholic and Episcopalian churches.

I worked for Father John Bell as his interim director of music for six months, and as a soloist and cantor for him for several years. I learned two very important lessons from John.

1. I had a choir member who left in a huff. I don’t remember why. I wanted to go talk to them. I remember standing with John in the vestibule as he greeted his parishioners. He said to me, “The best thing to do is let them walk away.” He was right. I took that into my leadership of TuDiabetes and other diabetes communities.
2. I was really short-handed in the choir for the 9am service. Two people singing. That was it. I had asked him to petition the congregation for volunteers. It hadn’t worked. He told me to “ask for a number.” “I need three women and two men to join the 9am choir.” The next Sunday, the chairs were filled. More than that came. It reminded me at the time of the advice to, in an emergency, ask a specific person for specific things. You—call 911. You—hold back the crowd and give us some space. You—lift up his head. It’s much more effective than “somebody help me.”

I learned ways to not run a community from priests I worked with, too.

1. From the priest who ran our campus ministry in college, who would snap at me, call me clumsy, or complain about how he was mistreated by people in the community. When I encouraged him, in private discussion, to turn the other cheek, he snapped that those people weren’t Christ-like. I learned that good people can be wrestling with struggles that may cloud their judgment.
2. From the pastor for whom I ran the children’s choir who made me wait an hour in the hallway and then dismissed the efforts of the children. “Oh, did they sing on Sunday? I didn’t notice.” At the Mass he presided over. I learned that indifference and impatience were forms of hostility. And that they broke trust.

Why do I mention all of this? Because people can be very good, and also very flawed. People can be driven to serve, and still be fallible. Growing our community takes all types, at all points in their journeys.

While I don’t believe in the god these men honored, I always believed in the communities we served.

Negativity builds cheap community. It’s easy to be riled up together. To sharpen pitchforks together. To picket industries together.

It’s harder to grow together. To mature together. To nurture patience and understanding together.

I’ve learned from both the special needs parenting community and the disability community to ask “What would be helpful right now?” And “what is that experience like for you?”

What can you do, today, to help someone grow in their journey? To reach out to someone struggling? To whom might you ask those questions today?

Tap. Tap. Is this thing on?

Hello, world.

It's been a minute. Okay, so my last real post was like 5 years ago. How ya been? Who's president now? Wait. Nevermind.

Inspired by Renza Scibilia to "Stand Up," I'm back. I wouldn't be back without her. Without you. Without so many of you in this community I've done my small part to nurture and grow. You who, in turn, have lifted me up so many times.

What has changed since I left this space to go lead a nonprofit and take my first executive role? Since I moved from Dallas to San Francisco? Since I went to work for a Silicon Valley startup? Since I jumped all in on the medical device industry? Since I joined a diabetes software nonprofit? What has changed since my kids grew from preschoolers to tweens?

Everything. Nothing.

In Renza’s post (seriously, go read it), she describes the ways she had tried to be at odds with who she is. It made me think about a personality assessment I completed in my last job. I'll never forget what the assessor said to me. "Melissa, you're so sure of who you are that you're almost uncoachable."

Welp.

Let's be honest about what we're working with here then. I was never actually going to say it sweetly. Despite more than a decade of trying to challenge myself to take it down a notch, I'm just as pointed and deliberate (and righteous) as I've ever been.

So that's not new. In fact, you should expect more of that. Maybe, if we're both lucky, the wiser, world-wearier version of that. A person who has had the opportunity to drop the mic a hundred more times in larger rooms with fancier tablecloths since last I was here. A person who has hopefully learned a few new things.

I've watched some of our friends leave this earth and pass their legacy into our hands; I feel the weight of that responsibility daily. I've been privileged to be in the position to impact products and governmental policies that could help a lot of people. Sometimes I’ve been successful. Sometimes I haven’t been.

I've met thousands more people with diabetes. I think more about what they need than what we need, dear reader. I'm still obsessed with connecting people and fighting for access. The need for advocacy on these topics has heightened, not lessened.

I'm back here because no one is everywhere anymore. Platforms and social trends change. I want to nurture a living document of my diabetes thoughts. Forums are gone. Gratification is instant. Patience is thin. An algorithm decides which friends you speak to, what your politics are, and how much insulin I take.

I'm back here even though I've argued that blogging is dead.

I'm back here on my own turf because the soil is still good.

I want to grow something.

D-Parody: You Need Some Carbs Now

You Need Some Carbs Now
(a D-Parody of Taylor Swift's "You Need to Calm Down")

You’re a type 1 that I don't know
And you’re takin' shots like me but your keto,
And I'm just like, damn, have you tried this jam?

Your face goes all crazed and you freak-out
And you tell me sugar kills and you scream out
And I'm just like, "Hey, it’s PB&J”

And I ain't tryna mess with what works for you
But I've learned a lesson that stressin' and obsessin' 'bout what people eat is not cool
Cuz cakes and scones didn’t give me type 1

So oh-oh, oh-oh, oh-oh, oh-oh, oh-oh
You need to calm down, you're kinda stressed out.
I may just like ho-hos, ho-hos, ho-hos, ho-hos, ho-hos (oh)
You need to just stop. (Can't you just stop?)
Like get all that hate away from my plate.
You need some carbs now.

You like to go low carb and that’s cool,
But you're comin' at my friends like a missile.
Why you so mad?
Are you well-fed?

Moderation’s fine, we can eat grains.
Sure Paleo was fine (in the dark age).
Reading your post made me want some toast.

You just need to take several seats and then try to chew on your meats
And control your urges to scream about what somebody else eats
'Cause shame never helped with an A1c

So oh-oh, oh-oh, oh-oh, oh-oh, oh-oh
You’re way too extreme, try some ice cream.
You may need some ho-hos, ho-hos, ho-hos, ho-hos, ho-hos (oh)
You need to just stop. (Can't you just stop?)
Like get all that hate away from my plate.
You need some carbs now.

And we see you over there on the internet,
Accusing Big Carb of killing us.
But we got your back,
We all know that you just need a snack.
You need some carbs now.

Oh-oh, oh-oh, oh-oh, oh-oh, oh-oh.
You need to calm down.
You're way too stressed out.
You may need some ho-hos, ho-hos, ho-hos, ho-hos, ho-hos,
But you need to just stop (can you stop?)
Like get all that hate away from our plates.
You need some carbs now.

D-Parody: Juice

Juice
(a D-Parody of Lizzo's "Juice")

Meter, meter on the wall,
Don't show me, 'cause I know I'm high.
Rebound now from a low
And now my sugar’s in the sky.

I be pumpin’ so much sauce
Got a bih lookin' like an IV.
Beeping like a car alarm.
That's right, baby, 2-5-3.
That's how it goes.

If I'm droppin’, every glucose tab is mine.
Say don’t overtreat, you’ll end going high,
Diabetes don’t get better over time.
Heard you say: “it should be simple”, why’re you lying?

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee, ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee, ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice

Hadn’t brought a snack with me.
That hypo came on way too fast.
I was dropping through the floor.
So mama drank the whole damn glass.

That fruc-tose concentrate
Hit me like a ton of bricks.
Hold up, sugar, please.
Don't make me have to take this bitch.

If I'm droppin’, every glucose tab is mine.
Say “don’t overtreat, you’ll end up going high.”
Diabetes don’t get better over time.
Heard you say “it should be simple”, why’re you lyin’.

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee (ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee (ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on my juice, blame it, blame it on the juice
Ya-ya-ee

I’m done with this CGM.
These double up arrows ain’t my friend. What?
They ain’t my friend. What?
I better take insulin.
I gotta go slow down this up trend. What?
This up trend.
(What'd you expect me to say?)

It ain’t my fault that my glucose hit the roof
While my basal was reduced.
Gotta blame it on the juice.
It ain’t my fault beta cells don’t reproduce,
And all hell has broken loose.
Gotta blame it on the juice.

Ya-ya-ee (Yay-ya), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice
Ya-ya-ee (Ya-ya-ee), ya-ya-ee, ya-ya-ee, ya-ya-ee
Blame it on the juice, blame it, blame it on the juice.

D-Parody: Can't Stop the Feeling

Can't Stop the Feeling
(a D-Parody of Justin Timberlake's "Can't Stop the Feeling")

Ah, yeah, ah, yeah
I get this feelin' when I go low
It makes my brain all wavy when it’s comin’ on
All through my fingers, down to my toes
I’m dropping mad, I’m feeling bad, I’m in that zone

But I got some glucose in my pocket
Got to get something to eat
I feel that hot blood in my body when it drops (ooh)
I can't make my eyes stay focused, and I move erratically
I am stuck until it passes, have to stop

It’s part of our lives - the highs and the lows.
Nowhere to hide from having hypos.
We need food to bring up our glucose.
Just a snack now, just a snack now, just a snack now.

Nothin' I can do but eat and just wait, wait, wait,
Feel a hypo creepin', get some juice,
And just wait, wait, wait, come on
So much more wish I could do
Than just wait, wait, wait
But ain't no cure be comin’ soon, we keep waitin’

I can't stop the feelin'
We just eat, wait, wait,
I can't stop the feelin'
We just eat, wait, wait, come on

You think I’m irresponsible
I must not care, or check my blood, but listen y’all
No rhyme or reason, we can’t control
We fly so high, no ceiling, then we’re back to low,

But I got some glucose in my pocket
Got to get something to eat
Feel that hot blood in my body when it drops (ooh)
I can't make my eyes stay focused, and I move erratically
I am stuck until it passes, have to stop

It’s part of our lives - the highs and the lows
Nowhere to hide from having hypos
We need food to bring up our glucose
So just a snack now, just a snack now, just a snack now

Nothin' I can do but eat and just wait, wait, wait,
Feel a hypo creepin', get some juice,
And just wait, wait, wait, come on
So much more wish I could do
Than just wait, wait, wait
But ain't no cure be comin’ soon, we keep waitin’

I can't stop the feelin'
We just eat, wait, wait,
I can't stop the feelin'
We just eat, wait, wait,

I can't stop the feelin'
We just eat, wait, wait,
I can't stop the feelin' (yeah)
We keep waiting, come on

Oh, yeah, yeah
I can't stop the,
I can't stop the
I can't stop the, I can't stop the
I can't stop the feelin'

Nothin' I can do but eat and just wait, wait, wait, (Can't stop the feelin')
Feel a hypo creepin', get some juice,
And just wait, wait, wait, come on (Can't stop the feelin')
So much more wish I could do
Than just wait, wait, wait (Can't stop the feelin')
But ain't no cure be comin’ soon, we keep waitin’

Everybody sing (Can't stop the feelin')
Got this feeling in my body (Can't stop the feelin')
Got this feeling in my body (Can't stop the feelin')
And it feels so out of body (Can't stop the feelin')
Got this feelin' in my body
Break it down
Got this feelin' in my body
Got this feelin' in my body, come on (ooh)

ADA 2015: Big Ideas, Small Revolutions

The ADA Scientific Sessions this year was a much busier experience for me as a nonprofit leader than it ever was for me as a participant, but the busy did not overshadow the buzz in the air over the innovation and research taking place in diabetes this year.

At times, I know we patients struggle with the acronyms and the drug class names (good lord, the drug class names), but one of the most interesting threads woven through this year's Sci Sessions for me as a patient was the exciting future of combination therapies of those crazy acronymic (is that a word I've just made up?) drugs - particularly SGLT-1/SGLT-2 combos and GLP-1/basal insulin combos. Combo therapies could make the tedious task of counting out pills or suffering multiple pens/needles or juggling complicated medication schedules easier for patients to manage their regimen so that they can meet targets and ultimately DO better while, at the same time, allowing patients an assortment of options they can tailor to fit their individual health goals. We are NOT a one-size fits all community.

Speaking of size, the talk of ADA 2015 in the type one market were the small startups with big dreams. Both Bigfoot Biomedical and TypeZero Technologies were among those representing the up-and-coming single hormone artificial pancreas (AP) solutions breaking ground in the space. What was once aspirational is quickly becoming operational! It may very well be that the next generation of innovation will come from new Davids rather than known Goliaths in the device industry.

AP solutions aren't one size fits all either though and it's glucagon's turn to evolve. The Bionic Pancreas team and their dual hormone (insulin plus glucagon) AP system continue to drive the conversation into the 21st century while companies like Locemia are striving to make glucagon a simpler, stabler hormone for us to administer, presenting data this week on the efficacy and safety of their nasal glucagon powder in pediatric patients. The "red kit" as we know it may someday sit behind glass in the museum of clunky diabetes delivery.

Some of the most interesting programs I learned about at ADA this year, however, are two programs that I feel they are all too quiet about - Community Days and Diabetes is Primary. In partnership together, Sanofi and the American Diabetes Association offer these two impressive outreach programs to the cities they visit each year for the Sci Sessions, bringing the benefits and resources of the sessions to those in the community. Community Days provides the hotel hospitality staff who serve the 18,000 guests descending on the city with time to attend organized events that educate them about their health and nutrition. As most diabetes care is practiced in the domain of the PCP, the second program, Diabetes is Primary, invites thousands of primary care physicians in the area of the conference to come take advantage of the vast resource in their own backyard to learn the latest research on diabetes for educational credit. I love the idea that these companies and organizations consider the populations of the big conference cities we invade when we come for these events because it directly addresses the issue of access - a particular pain point in the diabetes advocacy community.

Speaking of advocacy, I hope you are fired up and ready to learn for Diabetes Hands Foundation's 2nd MasterLab summit, coming up in just 3 more weeks. We are hard at work on a program that will inspire and empower you to become a more effective advocate. Register here and we will see you on July 7-8 in Orlando, FL.

And as for Sci Sessions...see you at 76!

Disclaimer: American Diabetes Association granted me a press pass and complementary registration for the 75th Scientific Sessions as a writer from SweetlyVoiced.com. All views are my own and do not represent the opinions of ADA or my employer, Diabetes Hands Foundation, both of which are unaffiliated with this blog. The media access and conference registration did not include travel or lodging costs, those being absorbed by my current employer, Diabetes Hands Foundation.

Asante MySnap - Review and Unboxing

As you may know, I have been using the Asante Snap Insulin Pump since my 30-day free trial in November of 2013. I thought they were cocky that I'd love it in 30 days, but I did, so it's been my pump of choice since Christmas Day 2013 when I unboxed my new red Snap (1.0).

Their latest product is called the MySnap and it's a user-designed color-customizable pump.

Using the MySnap designer, the user can choose from 11 different face and frame colors, as well as accents like patterns and colored button outlines. No two MySnaps have to look alike.

I chose a blue face with a blue frame. Shocking, I know.

They've made some respectable updates to their original product and I will outline them below.

Beyond the bright and beautiful colors, they've added a lovely high resolution color screen. THANK YOU! That was hands down the worst thing about Snap 1.0 and I've mentioned it in multiple places. It's 2014. I would like a nicer screen on a device I have to use everyday. (I'm looking at you next, Pebble Smartwatch.)

They have also added IOB to the home screen, as Insulet Omnipod did with their latest update. This is crucial information that helps us make management decisions and I appreciate quicker access to it.

The left button (from a sleeping screen) can now function as a shortcut to Temp Basal. Very useful and I've used it already in my first week. I still have my right button set as a shortcut to the Bolus Calculator.

A cannula prime now resets the Pump Alert (site reminder). That's a nice touch.

What's missing from MySnap? I'm not thrilled with the lycra case they sent. My husband likes it, but once again, I feel it's man-designed. I've already scratched my screen using it because I'm a bit of a klutz, so I've gone back to my Tallygear G4 standby case. And it works beautifully.

They also took away the option for Daily Alerts. I had been using these as a stand-in for missed meal bolus reminders after my usual breakfast, lunch, and dinner timeframes.

I'm quite pleased with the product after using it for a week and will shush now let you watch me try to unbox it with a 2yo and 4yo.

Try Snap for 30-days by clicking here in the month of December and my beloved Diabetes Hands Foundation gets a donation!


Disclosure: Asante Solutions provided me with a complimentary upgrade to their new MySnap insulin pump controller. They do not provide me with supplies or other compensation. My views are my own. My review of their product is unsolicited. This blog is not sponsored by any entity or corporation. I am not paid to review diabetes devices - I'm just obsessed with telling people what I think about ALL THE THINGS.

Pale Blue Circle

Sagan described the earth as a
pale blue dot.
"On it, everyone you love, everyone you know,
everyone you ever heard of,
every human being who ever was,
lived out their lives."

I feel that same wonder
when I hold a vial of insulin in my hand.
How it looks like water,
and how, like water, everything I am depends on it.

It's like I'm holding my heart outside myself,
careful not to squeeze it too hard
or hold it too warmly.
Without it, I'd have died in an emergency room.
a ten year old girl.

Everything I love,
Everything I know,
Everything I've experienced as I live out this borrowed time,
I owe to these droplets of science swirling in a bottle.

To Banting, to Best,
To starving children who reached for the first syringes
with faith and hope.

All so that I could stand here today,
marveling at this solution.

A century later, children still die without it
in places my privilege has not reached,
who aren’t alive to argue for access
and need a voice,
but more than that,
a vial.

In their obscurity, without that access,
They wait for a hint that help will come from elsewhere
while we stockpile for ourselves.

We are all part of a pale blue circle,
hopeful children
to be preserved and cherished.

In my hand,
I clutch a drug that cannot cure,
could certainly kill,
and cannot be trusted,
but an elixir that means
another day of life for me
and a day less for those without it.

With reverence and fear,
I marvel at its fragility
and tuck it safely away,
overwhelmed at the responsibility
and the random chance of the universe
that I hold it
and they don't.

Contribute your photo to the #insulin4all tumblr page.

Strong and Simple Challenge

The Asante Snap Strong and Simple Challenge is a smart, simple, and quick way to share how their pump has helped make diabetes simpler for you.

For every video (1min or less) submitted, Asante will donate $25 to one of two charities - Diabetes Hands Foundation and Diabetes Youth Families.

If you use Snap or even if you're just doing your free 30-day trial of their pump, would you consider making a video and choosing Diabetes Hands Foundation (or the other fine charity, sure, but seriously, DHF)?

I made my video. On my iPhone. In my car. In a Target parking lot. (Because that's where it was quiet and where I could be childless.)

It's that easy.

Answer (1) how has diabetes made you stronger? and (2) how has Snap made diabetes simpler?

Upload your video here and view my video here.

More Than a Number

I am more than a number.

 I am a child with dreams and determination.

I want to succeed. I want to be healthy.

 I am listening, learning, doing my best.

I'm staying active. I'm eating right.

 I am the victim of a system that fails my family,

fails to educate, fails to innovate.

I thrive in spite of the standards. I rise above the average.

In more ways than one.

I try new therapies boldly, but blindly. Alone. Terrified.

I sing, I teach, I shine. And I struggle.

 I am more than a number.

I'm a woman with dreams and determination.

 I find partnership. I discover community.

We are more than our numbers.

I am a woman, a mother, and I'm still listening, learning.

I rise and fall, ebb and flow,

knowing that there is much I don't know.

I am not a statistic.

I am a human being.

I am more than a number.

So are you.

D-Parody: I'm Still Here

I'm Still Here
(a D-Parody of Elaine Stritch's Live at Liberty recording of Sondheim's "I'm Still Here" from Follies)

High times and low times, I've seen them all
and, my dear, I'm still here.
Stocked closet sometimes,
Sometimes syringes and tears,
but I'm here.

I've found test strips in my shoes,
miscalculated, sung the blues.
Seen all my hard work disappear,
but I'm here.

I've slept in the ER,
courtesy of DKA,
but I'm here.
Tangled with PR
when they muck up what they say,
but I'm here.

I've heard cutting edge talk from the best.
Counted exchanges with the rest.
When I couldn’t get pregnant,
was I depressed?
Pretty near.
But I became a DOC-er,
so I'm here.

I've gotten through diabetic coma.
Gee, that was fun and a half!
When you've been through diabetic coma,
anything else is a laugh!

I've been thru Saccharine, Splenda and Truvia too,
but I'm here.
Drank Diet Dr. Pepper
back when the cans were blue,
and I'm here.

Tried every gadget, every tool,
Still I don't log as a general rule.
I should've gone to medical school,
That much seems clear.
Still someone said, "She's been there",
so I'm here.

Target range one day,
next day it flies out of whack,
but I'm here.
Roller coaster Monday,
Tuesday, you're back in the black,
but I'm here.

First, you're a poster child they turn out,
then careening through college,
then you're burnt out,
Then you see CDE to CDE to CDE.
I've almost got this thing figured out,
so I'm here.

I've gotten through,
"My grandma had diabetes.
She lost both her feet.
Or better yet, "My dad used to have diabetes,
but, you know, he got the thing beat."

High times and low times, I've seen 'em all
and, my dear, I'm still here.
Stocked closet sometimes,
Sometimes syringes and tears,
but I'm here.

I've run the gamut of A1cs
15 to 5 dammit, C'est la vie.
At least I got to be here,
and I'm here!
They said there’d be a cure in five years
but I'm here!

I’m still here!
Look who's here!
I'm still here!

D-Parody: 365

365
(a D-Parody of Dolly Parton's "9 to 5")

Tumble out of bed
and stumble to the kitchen,
Pour myself a cup of ambition.
I check my number,
try to come to life.
Consider my clothes
ever since I've been pumping.
Blood sugar climbs as
blood pressure’s thumping,
For folks like me, with the D, for 365.

It's 365 days a year without vacation.
Just to stay alive,
and stave off the complications.
Those without can't see
and they never give you credit
It's enough to drive you crazy
if you let it.

It's 365 days a year of shots and bleeding.
It's the ups and downs
and the questionable readings.
Try to do my best,
but they call me noncompliant.
It's enough to make you angry and defiant.

[mmmm]

You get to work
and your number's climbing
Meet with a client,
couldn't be worse timing.
You check and treat
and hope it goes back to range.
You head back to your desk
'bout the time you're dropping.
Right about then,
the boss man is stopping.
You make small talk
and hope you didn't sound too strange.

It's 365 days a year without vacation.
Just to stay alive,
and stave off the complications.
Those without can't see
and they never give you credit.
It's enough to drive you crazy
if you let it.

It's 365 days a year of shots and bleeding.
It's the ups and downs
and the questionable readings.
Try to do my best,
but they call me noncompliant.
It's enough to make you angry and defiant.

It's 365.
No time off for good behavior.
Just to stay alive.
It's no love, but all the labor.
It's the counting carbs
and the constant health minutiae,
and the a1c to which doctors would reduce ya.

It's 365
and ten times as many blood tests.
It’s the lows and highs.
Ain’t nobody needing this stress!
It’s a healthcare game,
no matter what they call it.
You spend your life putting money in their wallet.

It’s 365!
Man, I didn’t even notice.
It’s 365!
Damn, did I forget to bolus?
It’s 365.
I don’t even know how my blood sugar got to be 365.

D-Parody: Normals

Normals
(a D-Parody of Lorde's 2014 "Royals")

Diabetes is my daily stress.
I cut my flesh to check my blood glucose levels.
A pump might be part of my dress.
No end in sight, no cure for this madness.

But everybody's like
low carb, Plexus, have you tried the paleo?
cinnamon, essential oil, blame the Coca-Coleo,
We don’t care, we’re just trying to get through our day.
But then the news is like
cure in 5 years, type 2 epidemic,
school lunch, heart disease,
obesity's systemic,
We're aware but I guess what we’re tying to say

Is that we'll never be normals (normals).
Too much sugar in our blood,
Your little snake oil cure sounds nice
You say they cured it in some mice?
I guess it's time to school you,
Raise the truth above the noise.
And baby I'll school you, (I'll school, I'll school, I'll school…)
This disease ain't no one's choice.

My friends and I—we've cracked the code.
#wearenotwaiting for the tech or Big Pharma.
We find support among ourselves.
We reach out online,
fight the fight together

Cuz everybody's like
low carb, Plexus, have you tried the paleo?
Cinnamon, essential oil, blame the Coca-Coleo.
We don’t care, we’re just trying to get through our day.

But then the news is like
cure in 5 years, type 2 epidemic,
school lunch, heart disease,
obesity's systemic.
We're aware, but I guess what we’re trying to say

Is that we'll never be normals,
Too much sugar in our blood.
Your little snake oil cure sounds nice.
You say they cured it in some mice?
I guess it's time to school you,
Raise the truth above the noise.
And baby I'll school you, (I'll school, I'll school, I'll school…)
This disease ain't no one's choice.

Ah, ah, ah,
A cure we may never see
But I love the D.O.C.
Ah, ah, ah,
Listen here to Sweetly Voiced
This disease ain't no one’s choice

You see we'll never be normals,
Too much sugar in our blood.
Your little snake oil cure sounds nice.
You say they cured it in some mice?
I guess it's time to school you,
Raise the truth above the noise.
And baby I'll school you, (I'll school, I'll school, I'll school…)
This disease ain't no one's choice.

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.

D-Parody: 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.

D-Parody: 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

[Chorus:]
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

[Chorus:]
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

[Chorus:]
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?

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.

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.

The R Word

Dr. Eyes was almost done with my annual exam and had pronounced my right eye clear. She was almost done with my left when she saw them. More dots. More MAs (micro aneurysms) creeping toward the center of my macula.

She leaned to her assistant and rattled off a few acronyms and shorthand ophthalmology phrases. NPDR, I heard her say.

"NPDR?" I interrupted. "R? So this is R? This is what retinopathy is?"

"It's been retinopathy for the last year and a half. I called it trace before. Now I'm calling it mild. There is also moderate and severe. This is mild," she explained.

Wow. The last year and a half? And I didn't even realize that's what I was up against. Retroactive retinopathy. Heh. I didn't know that's what this has been. It was just pinholes to me. Cobwebs, we'd called them the first time. It seemed so manageable, so non-aggressive, just a facet of having had diabetes for over two decades. She had explained precisely what we were dealing with and I felt I had known where we stood.

The R word changes everything...if I let it.

It would be easy to be frustrated with her decision not to describe it to me as such, but instead I'm fascinated. It is completely true that the problem seemed manageable to me before it had a giant and scary COMPLICATION word stamped across it. As soon as the R word wedged itself in my head, so too did words like failure and futility and massive and scary and blindness.

Then I realized that nothing had changed from a few moments before. Nothing had changed from the year before when Dr. Ben had held my hand and said "This is nothing you did. This is diabetes." Nothing had changed from the first time Dr. Eyes pointed up into the far corner of the dilation room and said "cobwebs." I was fine then. I'm fine now. And I'll be fine. Right?

"It's time to hand you off to a retinal specialist," she said. "I will still see you for vision checks and annuals, but I want to hand you off to someone who has the tools to follow this. Let's see. Where are you living now? Okay, I want someone that is in the Plano office then. Dr. Retinas is really smart. And he's young, too. He can be with you for the long haul."

The long haul.

90% of people who've had this disease as long as I have experience some degree of retinopathy, of macular edema, of either NPDR or it's vicious big sister PDR.

It's nothing I did. Or didn't do.

Jesus, how hard it is to believe that. I can say it, I can type it, I can fucking PREACH it to others, but in a disease where you expend every last ounce of energy trying to control wiggling little variables and outcomes from one hour to the next, it's hard to accept that there may be rounds that you will lose no matter what you do. Futility.

My visit to Dr. Retinas the next week was a tough one on several counts.

I had a very negative, painful reaction to the first attempt to inject dye into my delicate little veins for the fluorescein angiogram. The vein in my arm refused to accept the dye, began to bulge, and spilled the dye into the surrounding tissues. What is usually a slight stinging with mild nausea for patients during this procedure was me crumpled in the floor crying, needing to vomit, an oscillating fan positioned toward my face, an ice pack on my swollen arm.

Honestly? It was fucking terrifying.

And then we had to try again.

The second time we went in through my hand and it took. I fought back nausea and tears with the needle in my hand as I pinned my teary eyes open, staring forward into the bright lights thinking, "So this is my future. This is what eye appointments will be now. This is what a complication feels like. It feels like pain and loneliness and too many questions and nausea." Oh, the nausea. I was sick for over an hour.

By the time I got back to Dr. Retinas to review the photos, I didn't even care anymore. Seriously. I just kind of blinked silently, trying to ask questions that mostly consisted of "Do we ever have to do that angiogram again?"

"No," he lied.

He showed me that both eyes have MAs on the macula. Pinholes, perhaps, but not cobwebs anymore. These itsy bitsy spiders were crawling all over my maculas, taking up residence center stage. And he showed me where the left one was bleeding out. You could see the little fluorescent spillage on the black and white photo.

Since I don't have any swelling (edema) or vision loss, no fluid on my optic nerve, etc, all we do is watch. Wait. Come back in 6 months. Watch and wait. Watch and wait.

We're in this for the long haul.

I won't be beaten by a word.

"The precision of naming takes away from the uniqueness of seeing."
---Pierre Bonnard, French painter (1867-1947)