The sting is slight
from my lancet tonight
And my finger's feeling pained.
Can't remember when I last changed it.
Is it spring time once again?
[audience laughter]
My finger’s pounding like my heartbeat
deep inside
I could change the depth,
No, this lancet’s fried.
Don't let your endo ever see.
Be the good girl you always claim to be.
Rotate, don't wait, don't let them know!
But now they know!
Let it go, let it go,
Don't give it one more pop
Let it go, let it go,
You won't get one more drop
I don't care what your sharps can weighs
Change your needle out
You've got 700 more anyway! [laughter]
[music]
It's funny they don't realize
That the shots are fairly small
That i’s not the pokes and blood tests
that get to me at all
If all it was was needle pricks
I'd suck it up, accept the sick,
It's all the other mental tasks it asks!
Let it go, let it go
Just change to one that’s clean
Let it go, let it go
You’re such a drama queen. [audience laughter]
Toss it out
Take off that cap
Change that needle out…
[music]
This lancet's done its time, it's time to
wave it on,
There's new blood and new holes to poke, let's go ahead, call it done.
And one thought powders forth just like a
glucose tab
There's five left in this drum!
Just rotate it and stab!
Let it go, let it go,
Your winter lancet's gone.
Let it go, let it go
It wasn't worth a song.
[audience laughter]
Take a stand!
Today's the day!
Rotate that drum!
You've got 700 more anyway.
[applause]
I wrote most of that yesterday and didn't even need the cheat sheet, thankfully!
One of the things to know about me is that I am the "Weird Al Yankovic of Diabetes"
and I have about a dozen videos on YouTube and you can look those up later.
So right now, what was I saying?
Oh yeah, find your stars.
How are we doing on time?
Alright, so I'm going to kind of speed through this cuz, like I said, I'm a talker.
When I talk about finding your stars
We think of stars in the way that they used to many years ago
as navigational points
as something
that, during the day, when the light is on,
the stars still exist even when you can't
see them, right?
So I'm going to explain this a little bit.
So I was diagnosed with type 1 diabetes in 1990.
It was a pretty typical, boring, central casting kind of diagnosis story.
I was in DKA, coma, blood sugar over a thousand.
The picture's in black and white, but I'm
not that old.
My aunt was just really into black and white photography. [laughter]
This was about a month after I was diagnosed,
and they told me what a huge responsibility this was going to be.
And at 10, in 1990, at the best medical center in Dallas, Texas,
I learned how to test my own glucose, calculate my own doses, and give my own shots.
And I was told that, if I did this, everything
was going to be fine.
Well, at one point in my first three days
of kind of coming in and out of consciousness,
apparently, in a very Pollyanna kind of way, I woke up and told my mom,
"I'm glad this happened to me and not some other kid because I can handle it."
And then I passed back out and she cried like a baby.
[audience laughter] "My baby!"
But this is the thing.
I thought that you just had to be like..."No, you be responsible and you've got this,
You can handle it."
They told me I had to take shots for the rest of my life and "okay, I can do that."
Yeah, I didn't know what I was talking about.
But I was 10 and I was brave and that's wonderful, right?
I'm not entirely sure I had it all figured out.
This is what 30 years of A1c can chart like.
For many adults in the room, if you've had A1c checked this long, this is probably familiar to you to a degree.
But my highest A1c ever was about three years after diagnosis...
It was 15.4%. [audience gasps]
But here's the thing.
You guys are really ready to say "oh, well, you know teens and managing glucose..."
I had color-coded logbooks.
I would shade in the top righthand corner
if I took an injection in the top right arm.
I was the poster child for compliant diabetes.
And yet...[gestures to chart].
But as I like to say, the data only tells
part of the story.
And somewhere, if you're looking at this graph, somewhere circa 2007, it all just locks into place.
And it's been in place now for 12 or 13 years.
So what happened?
Well, again, that's just data.
One of the things that I like to tell people
is that "You are More than a Number".
The number is just a datapoint to tell you
what to do next.
I do not get worked up about what my A1c is or isn't.
It's not a grade.
It's not a score.
It tells you nothing about what was happeningin my life.
So that top picture there, that was me
in seventh grade,
playing volleyball, straight A student, 15.4 A1c.
High school, running in the high 9s, low 10s,
top of my class, starring in the shows.
College, double major, summa cum laude, A1c in the 10s.
Got an insulin pump for the first time.
Young adult, I was a music teacher.
You're shocked.
[audience laughter]
And I'd still never seen an A1c anywhere close to the recommended.
I didn't see my first A1c under 8 until I
was 26.
So then there's this second row of what happened.
You see I'm newly married, A1c 6.1%.
My husband does not get all the credit.
[audience laughter]
I had two beautiful babies who are now 9 and 7
and went through two pregnancies with type 1 diabetes,
so as I said, you have life going on.
And it's so much richer and more interesting than these data points.
So what happened?
What happened between picture number 4 and picture number 5, aside from this guy.
Again, don't tell him that I say anything
nice about him.
[audience laughter]
People say well, it's the advent of technology.
Technology has done so much for you.
People who know me know that I'm a technology nut.
I was one of the first 20 people on a DIY
AP system.
I've used every meter, every pump.
I can tell you down to the miniscule stats
of the delivery and weight -
I know the weight of insulin pumps.
I know a lot about diabetes
tech and I've spent years talking to audiences
about "how do you find the tech that's right for you?"
So everybody always assumes that tech's the answer.
In 29 years, I've had at least 18 different
models of glucose meters;
that's just what I could come up with off the top of my head,
12 different insulin pumps from 6 different pump companies,
8 different CGMs from 4 companies,
7 different insulins including inhalable,
2 different DIY automated systems,
and let's be honest, probably one lancet.
[audience laughter]
So it was the technology, right?
No.
Again, I saw my first A1c in the 6s before
I ever slapped on a CGM in 2008.
I started an insulin pump in 2000 when I was in college; A1cs were in the 10s.
There was no magic technology bullet.
What I found was community.
Community is a non-negotiable tool in my technology toolbox.
Technology can deliver your insulin, it can
do some of the thinking for you sometimes,
it can tell you a datapoint to act on, like
an A1c,
but technology cannot heal your soul.
Technology cannot be there for you when you are ready to give up,
and sometimes it's the technology you're ready to give up on.
[audience laughter]
I joined an online community.
My husband does get the credit here.
We were newly married and he said, "did you know people are talking about diabetes online?"
And I was like, "why?!"
[audience laughter]
I had never known anyone with type 1 diabetes.
I mean, I knew somebody in college.
She wore a pump and I would see her occasionally and be like, oh yeah,
she's got the pump, maybe I'll think about that.
But there were people talking online about
diabetes and it changed my life.
I joined a community called TuDiabetes.
You guys may have heard of it; it's now a
property of Beyond Type 1.
And I met so many people, and for the first time in my life...
I mean, my husband, my mother, my father,
they really support me in diabetes,
but they don't "get it".
Sorry, parents, I love you, but you don't live it the way we live it inside our bodies.
And something about finding somebody that that was just tablestakes,
like I didn't have to explain that, they got it,
it was life-changing.
So there's this quote, by this poet named
Joe Straynge, that I like:
"Human connection is the most vital aspect of our existence."
"Without the sweet touch"---I love that, the
diabetes thing, that's just great--sweet touch---
-"of another human being, we are lonely stars in an empty space, waiting to shine gloriously."
If you had told me as a young adult that I
needed support, I would have rolled my eyes.
"Oh yes, I need to go to a support group for my diabetes, thank you very much, yeah."
I was independent, remember?
I had been told that if I just did the things
I was supposed to do that I would have this,
but nobody knew the burden inside my head.
Nobody knew how hard I found this, and how much of my concentration and energy, on a daily basis,
while I was out there performing in
shows and making good grades,
how much of my energy, always, on the back burner was dealing with this.
And finding that human connection, like I said, was extraordinary.
And it made me shine gloriously.
Brene Brown, who is a-- just a soulful and lovely Houston-based professor;
she studies in the social sciences,
She's written a lot about vulnerability and guilt and shame and the way we process these things.
She said, you know, "We don't have to do it
all alone. We were never meant to."
Humans are social creatures, even on the days when you just wanna wear your yoga pants
and eat popcorn or whatever, humans
are actually---we NEED human connection.
The two people I most credit with being stars in my orbit, one of them, again, my husband,
he was someone who not only shared with me that people other than him could talk to me about diabetes,
but he encouraged me to try
new technologies, he hacked all my diabetes devices...
[audience laughter], he helped write
Nightscout, slapped a DIY system on me,
then went so far as to-- now he works with me as a senior software engineer
at Bigfoot Biomedical where he has declared he's going to build me an AP system.
So he's been a huge supporter, but the thing that has been most supportive that he has done
is that he has empowered me and supported me in efforts to reach out to my community.
When I wanted to volunteer with nonprofits, he stayed home and watched the kids more.
When I wanted to go across the nation to a summit, he paid for it. He said, "we'll find a way."
So he supported not just me and my daily diabetes, but he supported me reaching out to my community.
And that was extraordinary.
And that community, the founders of TuDiabetes.org - you see us there;
I'm pregnant with my daughter in that picture. That was the day that I met them in real life. It was my first trip to the Bay Area.
And then that's us today. He and his wife are there on the Livongo team at the JDRF walk,
and Kevin and me are there with our kids.
I found people that I could connect with,
and these people,
many of the people I found, legitimately are like celebrity diabetes rockstars at this point,
but it doesn't matter who is in your orbit. It's the depth of your connection.
So these are some pictures - three of them are from the Bay Area Diabetes Summit,
but I just had to give an Aaron Kowalski photo because I'm really excited about his leadership that's just been announced at JDRF.
These are all people I've run into at Bay
Area Diabetes Summits over the years.
You have an opportunity today to not only listen and learn and chat with
some of the best and brightest researchers, and exciting community members, and community leadership
in diabetes in the world at this summit, but you have an opportunity to make friends today.
The people sitting on either side of you who you know, whom you may not know,
these are people that get it.
You don't have to explain diabetes to the
mom at the end of the row.
You don't have to explain diabetes to the
woman who's here with her husband who's like
"I don't know about this whole thing, but I'll come and I'll support you at this."
These are people who are here today. Guys, look around. This is your community.
"The size of your community," I said, "doesn't matter as much as the depth of your connection with them."
This is a quote from a guy who's now Chief Community Advocate at Intel.
It doesn't matter if your diabetes star is
literally one other person.
That's fine, but you need someone in your
life who you can call up and be like...
Well, Krystle Samai and I had a great conversation.
We were having a business call about my being Master of Ceremonies
and the first 15 minutes was us just dropping really inappropriate
language about our high blood sugars.
[audience laughter]
The ability to do that with somebody - that I'm not,
that if I went low on this stage, you guys would all know what to do. [audience laughter]
The fact that, again, you don't have to explain yourself to someone.
That part of your heart that you keep so hidden; it's just understood, right?
We have a phenomenal program today.
What you get at the Bay Area Diabetes Summit, you legitimately - and trust me,
I've been all over the nation in my work in nonprofit - you don't get this anywhere else but in the Bay Area.
We live in an extraordinary place and this
is an extraordinary combination of nonprofits
who put this program together today. You want to hear about smart insulin?
You're gonna hear about that next.
You wanna hear sesiones en espanol? Lo tenemos.
You wanna hear - if you're a parent, if you're a spouse, if you're a partner, if you are a young adult,
if you're a teenager, you want to work better with your provider? We've got a session on that.
You want to learn to take insulin better? We've got a session on that.
You want to strike the spike after meals? You want to learn about cure research?
You want to learn about "how do I navigate travel? How do I travel with diabetes?"
I'm getting on a plane tomorrow and that's one of my thoughts.
You wanna learn about "how do I manage exercise?" What about women's health issues?
What about pregnancy? There are sessions on all of these things today.
And your opportunity to learn from some of the best researchers in the country.
We have people here today who are presenting papers at major conferences and
you guys are getting sneak peaks and glimpses at some of that research.
So this is a great time to be in the Bay Area and a great place to be together.
And I want to say, I'm really excited about
the closing speaker
because he's my colleague at Bigfoot - Lane Desborough.
He's going to be talking about automated insulin delivery, so you want that, we got it, too.
You're coming to get the raffle ticket anyway, so [audience laughter] come to the end.
And then the opportunities that you have in the Bay Area.
I will tell you, I mentioned that I had never known anybody with type 1 diabetes.
Well, I grew up in Dallas, and I'll be honest, don't tell them I said this,
but they had a terrible sense of community in Dallas. There was nothing.
Once I got to be an adult, there were occasional, like, happy hours if I wanted to drive 50 miles to go to one,
but there was no sense of community where I grew up.
And what you guys have through things like DYF and CarbDM and the fact that Beyond Type 1 is based here,
you have amazing opportunities to keep connecting deeply with these stars in your sky.
CarbDM, and these are just a few of the things, but they have programs, not just in the spring and summer,
but these programs actually extend through the year: Carbs in the Park, Coffee and Carbs, Beer and Basals,
Type 1 Topics. Type 1 Topics - there's one coming up really soon on Tidepool.
Can we get it for Tidepool? Howard's in the house. [applause]
Coming up at the end of this month, very soon, there's the JDRF Wipe Out in Santa Cruz.
You can't get that anywhere else in the world.
The Hope Gala is coming up.
DYF, they've got the family camp in Bearskin Meadow,
they've got an adult retreat, they've got their Beach Day.
In the fall they've got the Spooktacular retreat which is always a ton of fun.
My team has been out there a couple times.
Beyond Type 1 has their Slipstream in Southern California,
so if you get down south out of the Bay Area, you've got Slipstream,
you've also got the TCOYD ONE retreat for adults in San Diego,
and then ADA has Tour de Cure coming up in June.
CDN, not events-centric, but if you've got College Diabetes Network. Right now, they have all these great tools
to prepare for going off to college
and then once you're actually at college, tons and tons, just dozens of chapters all over the country.
And then, you can be like me and also get online.
There are Facebook groups, there's different community forums:
TuDiabetes, EsTuDiabetes, the Beyond Type 1 communities, Children with Diabetes -
all of these different things. You can follow diabetes hashtags,
and if you don't know what those are, I can explain them to you after, on Instagram, on Twitter.
And actually connect with people every single day, as you need them.
So I saw this quote and I loved it: "Good
friends are like stars. You don't always see them, but you know they're always there."
During the day time, you can't see the stars, but they're still there.
I know that whenever I need it, all I have to do is pick up my phone and my diabetes community is right there.
I'll never forget a night I was having a really really hard time.
My blood sugar was high, I was pregnant, so I was already emotional,
and I was worried about the high blood sugar
and my infusion set in my insulin pump, it turns out that I had a bent cannula
which means I wasn't getting my insulin, and I was so mad.
And my husband was like, you know, don't worry, we'll bring your sugar down.
I'm like "That's not it. You don't understand. It's a mad that I can't articulate."
And I curled up in a ball and just cried and
cried, but I sent out a tweet
and the support I got back from people who just got it, they just got why I was mad -
why I was mad that the technology failed, why I was mad that I even had to deal with it, they just got it.
And the amount of support that came flooding in, I have to admit, and don't tell my husband,
it was so much more meaningful than his arms around me. [audience laughter]
Because it was just permission. It was saying, you're...
I have a friend who says...
we talk about depression and anxiety as having, in many ways, your brain is having an
abnormal response to a normal situation,
and I have a friend who works in mental health tell me one time,
"You're constantly in an abnormal situation, Melissa. Diabetes is not normal.
And your brain is trying to respond, so if you're feeling abnormal that day, that's okay. Your brain is working."
Just this idea of finding out who your stars are and
you have an opportunity today and throughout the year in the Bay Area
to connect with people in a way that I never did when I was where you are.
So I'd love to continue to connect with you.
My name is Melissa Lee. You can find me online as SweetlyVoiced.
I have a blog that I don't write to much anymore, that's Sweetlyvoiced.com.
You can find all of my parodies there, and
all of my past writings.
And I'm in the Bay Area--I'm in Milpitas---so whenever you guys wanna chat,
I'll be your star. Thank you. [applause]
