Dexcom graphs that look like gigantic Ms and Ws?  I see those all the time.  But when I sift through the pile of photos I have on my computer (in the folder marked "Diabetes Crap;" I can write real good, Ma), the Dexcom graphs I see are all pretty.  Nice, straight lines or soft bell curves, without the sharp angles.

I know these pictures aren't representative of how my diabetes is controlled, on a day-to-day basis.  There are way more times that I'm muttering "You stupid jerkface pancreas ..." than moments when I want to whip out my camera and take a snapshot for posterity.  But I like having these happier photos outnumber the ones that make me grimace, because when I need a lift, it's nice to have a catalog to draw from.  This is what I chose to document, visually, because it inspires me to earn this photo opportunity again, you know?

I chose to document this, because it made me feel good.

May will mark the end of my seventh year blogging at SUM (and starts the eighth year - jeepers), and when I look back through the archives, I'm weirdly proud to see a diversity in what's documented.  There are some really high moments (high as in "emotionally high," not "OMG, how did that 312 mg/dL sneak in there?" high), like when the Bird was born or when Chris and I got married.  And then there are low moments, like trying to be a strong advocate for PWDs while going through burnout, or when blue candles start peppering our Facebook feeds. 

And then I look at other people's blogs (holy crap, there are a lot of us!), and see that they're chronicling the good, bad, and decidedly 'eh' of life with diabetes.  The real stuff.  It's crazy how honest we are with the Internet.  I see people writing about things online that they might not be sharing with their doctor.  Or their coworkers.  Or their very closest friends. But it's shared here, and there's a power to sharing our stories.

I'm amazed at what we chose to document, as a community.  From celebrations of a no-hitter to scoring a quality pair of blue shoes, to difficult moments of feeling burnt out and admitting that we're struggling, what we document shows our strength as a community.  We're not afraid to share the stuff that really scares us, or empowers us, and we have one another to mark different milestones with.  What we share, as a global community, could help any one of us improve our health, emotionally and physically. 

Diabetes isn't a perfect math where you can just solve for X.  Usually, we're solving for "why."  And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.

Posted by Kerri Sparling at 10:49 AM | Permalink | Comments (14)

My postcard for the World Diabetes Day Postcard Exchange came in this week, and I love it.  It's from my new friend Corina in Romania:

To see more of the airmail artwork (because this was truly a global art initiative), visit the World Diabetes Day Postcard Exchange page on Facebook.   

Posted by Kerri Sparling at 09:27 AM | Permalink | Comments (3)

Posted by Kerri Sparling at 09:13 AM | Permalink | Comments (0)

Today, I wanted to share some words from Scott Benner, blogger at Arden's Day and dad to Arden (who has type 1 diabetes), to get the word out about his ambitious goal to help people with diabetes gain access to insulin pumps.  He's boldly asking for some assistance, and as someone who understands the importance of diabetes technology, I am happy to help him spread the word. Take it away, Scott!

*   *   *

My name is Scott Benner. I’ve been a stay-at-home father since my son Cole was born in early 2000. My daughter Arden was diagnosed with type I diabetes just after her second birthday, in the summer of 2006.  Exactly one year later I wrote my first blog post on my site, www.ardensday.com. Through everything, the diagnosis, coming to terms, and taking control, I’ve learned many valuable life lessons. A few of them stand out above the rest: perspective is most important and you pay a heavy toll to have it, transparency only leads to good things, and I should be doing more.

It’s the last one that I have struggled to put into practice. I share on my site so other parents will know what to expect and hopefully feel less alone. I love writing and I treasure the experience of interacting with this amazing online community.  But there is one aspect of my interactions with all of you that leaves me feeling empty. I first wrote about it in an entry over two years ago entitled, ‘Time and distance lend perspective’. After seeing the positive influence that device technology available now to type I diabetics brought to Arden and my family, it saddened me to realize they weren’t available to all who wanted them. I said in part:

“Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un- or under-insured are incapable of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...”

It took me two years, a lot of courage gathering, and some brief but powerful advice from Kerri to be able to say this:  I am moving forward to establish a charitable organization with the single goal of putting insulin pumps and continuous glucose monitors in the hands of the children that need but can not afford them. The initial paperwork and boring behind the scenes stuff is a bit arduous but I have done my diligence, plotted a course, and announced my intentions on my site.

The reason that Kerri has so kindly given me this space is that I can’t completely afford the initial payments that are required to properly file the necessary paperwork to qualify for charitable status. I almost let that stop me but then I thought, “maybe others would be able to support this goal if they knew how focused, passionate, and truly dedicated I was to making it a reality”.

So here’s the pitch:

In a few days I’ve all ready received some amazing gifts from people like you. People I’ve never met in person, that have no real reason to believe in me, but who like me, put hope above all else. If you can see your way to hoping along with a dreamer, then please follow this link for details on how you can be a part of bringing something positive and wonderful into the world. A world where too many children live with their diabetes everyday without the tools that they want and need and deserve.

Thank you so much for taking this time with me!

- Scott Benner - @ArdensDay

*   *   *

Thanks for your efforts, Scott, and good luck!!

Posted by Abby (the Person) at 01:30 PM | Permalink | Comments (14)

I came home today to discover so many blue candles in bloom online.  Within a few clicks, I saw her face and read her story and felt that pang of loss for someone I'd never met.  Again. 

I wanted to repost something I'd written last October, because it's still true.  Diabetes is a tough, invisible disease that can devour us entirely, but we are strong.  We have each other.  We have today.  And we need to reclaim the unity in our community, because we are what matters.  It's you.  All of you.  All of us. 

Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration.  

- October 21, 2010

Posted by Kerri Sparling at 09:42 PM | Permalink | Comments (11)

Last week (was it only a week ago?  My time-space continuum is completely off kilter these days), I was out in San Francisco for a quick visit at the Lifescan Town Hall meeting.  

Okay, I was actually in Milpitas, which his a nice little place that the driver from the airport inadvertently described as, "Why are you going there?" Not exactly the same excitement as the home of the Golden Gate Bridge and other sights I saw from the car, but close.  

I was asked to come out and talk about life with diabetes to a large group of Lifescan employees (they make the One Touch meters and they clearly like people who play guitar because Crystal Bowersox and B.B. King are their buddies, so I felt a little musically inept).  I wasn't asked to talk about my meter, or my pump, or to pimp out any partnerships, etc.  They just wanted to hear about life with diabetes.  Plain life.  Real life.

Because I don't have a formal bone in my body (all of my bones are in sweatpants and baseball caps), and because I didn't have any airs to put on, I just stood on that stage showed them our community.  I showed them some of our blogs, and talked about some of our meet-ups.  I showed them that while life with diabetes can be challenging, the power of a diabetes community makes life with diabetes inspiring.

"I didn't know many people at all who had diabetes, like me, growing up.  But now, I think I know more people who don't make their own insulin than those who do.  That's a paradigm shift, and one I'm very grateful for."

And I impressed upon them that they are part of this diabetes community, as well.  Initiatives that serve our needs (medical device companies, drug companies, advocacy organizations, behavioral health organizations, local JDRF and ADA chapters, etc upon etc) expand the boundaries of the greater diabetes community.  We, as PWD, are less alone than we ever have been before.  

It's really an honor, being asked to describe our community to people who are just getting to know us.  I feel this strange rush of pride when people ask me how the Internet has affected my health.  "It's made a world of difference;  it's changed the scope of how I view my diabetes, and my potential."  I love talking about the people I've met through the blogosphere. ("Cara's accent will melt your heart!"  "And this is Christel … her baby's smile will melt your heart.")

And I love correcting people:  "So these are your internet friends?"  "Nah - they're just friends."

Diabetes Month is a 30 day exercise in spreading awareness about diabetes and hopefully making a difference, big or small.  Whether you're sharing your personal story, or the brutal facts about this disease, or working in some capacity to make people more aware of this condition that so many of us live with every day, you are making a difference.  I'm proud to be a part of a community where Diabetes Month is every month, and we're all truly in this together.

Posted by Kerri Sparling at 10:47 AM | Permalink | Comments (8)

Diabetes Month is fast approaching, and I've been thinking about this community - our community - and how much it means to me. I was reminded of a poem I wrote back in 2007 about the impact this community has had on my own health and awareness, and I wanted to share it here, because you guys are what matters.  

What Matters (originally published in November 2007):

I live every day with a pump at my hip
A meter close by, and a smile on my lips.

So many moments there are in my day
When it seems that my pancreas gets in the way,
Be it exercise, cooking or sleeping or driving,
I’m constantly checking to keep myself thriving.
And while my fiancé, my family and friends
Support me and hold me and love to no end,
I started to blog because I felt alone -
The only diabetic as far as I'd ever known.
Needing to find others who understood
How a number was scary, how a food could be good.
How I worried my eyes were damaged from cake.
I worried my worries were too little, too late.
How I worried my feelings were strange and unique
And that my diabetes made me some kind of freak.

I wrote my first post, took a great gasp of air,
Hit the big publish button and from out of thin air
My words were set loose to the great world wide web
And I wanted and hoped to hear what others said.
Within just a week I had found several others.
Type 1’s and type 2’s and some fathers and mothers.
These people, they knew, and I felt less alone.
I feared less my future and all the unknowns.
The blogging took off and it chronicled things
Like my job and my friends and my engagement ring.
I poured out my feelings and dealt with my fears,
I let loose my laughter and reigned in my tears.
I felt so much stronger with all the support
Of the people who knew how my body fell short.

When I peel back the layers to what matters most,
It's not about how many readers I host.
It's not about statcounts and not about feeds.
It's not about fame and it’s not about greed.
It’s not about comments or big recognition,
It’s about all the challenges of this condition.
This community knows me where I hurt the most.
It makes me feel normal, supported, and close.

I'm thankful for every day towards good health.
I’m thankful I’m not doing this by myself.
Endless thanks to the people who read these brave writers
And for making the burden we carry much lighter.

Posted by Kerri Sparling at 08:12 AM | Permalink | Comments (13)

What would have made college easier for me, diabetes-wise?  Having the diabetes online community.  Unfortunately, at that point in my life, I didn't really know anyone else who had diabetes, so I was a health soloist instead of part of this incredible, chronic choir.  

Christina Roth, founder of the College Diabetes Network, has created what I wish had been there for me.  And today, she's taking some time to share her story, and to encourage others to get connected.

SUM: What gave you the idea to start CDN? 

Continue reading "Guest Post: The College Diabetes Network." »

Posted by Abby (the Person) at 08:43 AM | Permalink | Comments (5)

November is Diabetes Month, and Cherise is asking us to rock blue on Fridays. 

From the Blue Fridays Facebook page:  "Blue Fridays is an initiative to bring attention to World Diabetes Day, and to advocate and bring awareness for diabetes and the people living with it. Diabetes is more than a national issue; it's a world epidemic. This year, I want to rally the diabetes community to celebrate World Diabetes Day and Diabetes Awareness Month by asking people to wear blue every Friday during the Month of November and on World Diabetes Day (November 14). Please help spread the word"

Need a little visual encouragement?  Got it:

Posted by Kerri Sparling at 01:40 PM | Permalink | Comments (1)

Heather Clute, one of the hosts of the Transforming Diabetes podcast, describes herself as "living well (but not perfectly) with type 1 diabetes since 1997."  I love that.  I love that she recognizes the impossibility of perfection, but appreciates the fact that life can still be awesome after a diabetes diagnosis. 

And I also really respect the mission of their organization:  "Transforming Diabetes invites listeners who have diabetes, love someone with diabetes, or simply care about the issues around this epidemic to join in our community of inspiration.  We are creating connections around living well in spite of – or even because of – diabetes.  We hope to turn the 'S-Word' of scare in diabetes into great self-care, self-responsibility, and personal empowerment.  Let’s turn the table on those scary statistics, and take the diagnosis from challenge to opportunity!"

And I'm honored to have been a guest on the Transforming Diabetes podcast earlier this week, talking about the Diabetes Sisters conference, how diabetes meet-ups are like "grown up diabetes camp," and the power of positive influences in the diabetes community.  You can check out the podcast by clicking this link (which will take you to their blog) or by downloading the streaming podcast here. 

(I apologize for my excessive giggling.  I don't know what got into me.)

Posted by Kerri Sparling at 04:16 PM | Permalink | Comments (2)

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").

Click here, or on the unicorn, to download the e-book!

Posted by Kerri Sparling at 08:38 AM | Permalink | Comments (27)

I'm working on recapping the ePatient Connections conference from last week, but what resonated most for me was hearing patients reiterate "We're more than our diseases!"  And it struck me that I'm constantly judging myself on those tougher diabetes moments, and refusing to celebrate the successes.  I need a little more celebration. 

I know my cumulative health is what doctor's pay attention to, but sometimes I just want to sing from the rooftops about that nice, round 100 mg/dL.  Blood sugars that are out of range get all the attention; it's time for me to feel good about the wheels that don't squeak.  ;)

Posted by Kerri Sparling at 10:02 AM | Permalink | Comments (12)

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme. 

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)

Posted by Kerri Sparling at 10:00 AM | Permalink | Comments (18)

(That has to be one of the goofiest subject lines I've had in the last few ... evers.)

A few days ago, I received an email from a fellow T1 PWD who has been living with diabetes several decades ... but hadn't ever had a pedicure in her whole life.

And I replied:  "Neither have I."

There were several crutons of information thrown at my family and I upon my diagnosis almost 25 years ago ("Don't even think about getting pregnant" and "Pedicures will cause massive infections so none of that, either" being repeat offense croutons), and getting a manicure or a pedicure was always marked as a no-way back in the day.  However, times are doing their "changin'" thing. 

From what I've been told, the risk is a possible infection.  With all that filing and scraping and whatever else they do while they grapple with your toes, there's a chance of a foot wound.  And then an infection.  And all hell can break loose.

Or so the rumors go.

Personally, I've never cared about a manicure of any kind.  I don't know if there is a manicure "type," but if there is, I'm not that girl.  I don't like nail polish on my fingernails.  I don't like nails any longer than my nailbed.  I'm a writer, the mother of a young child, and I do a lot of housework, so my hands aren't for "show."  They're for work, and I beat them senseless on a daily basis.  

As far as a pedicure goes, I paint my toenails all the time.  (Right now, they're a lovely rose color.)  But I do it myself, and I file my nails with a basic emery board.  I have one of those As Seen On TV! PedEggs and I use it when the hot beach sand and my flip flops take their toll on my heels.  But for the most part, my beauty regimen from the ankles down is simple.  So long as my feet look nice, I'm happy.

Because secretly (shhhh, don't tell anyone, okay?), I'm a little scared of a pedicure.  It's on that BIG LIST of things PWD ARE NEVER TO DO and it's always highlighted in the scary chapters of diabetes books.  But is that fear legit?  Are nail salons brimming with germs and grossness, and do the nail technicians come at you with giant buzzsaws o' destruction? Or is it a judgment call that people with diabetes need to make on their own?

Has anyone with diabetes had a pedicure and survived to tell the tale?  What are the dos and OMG-don'ts of getting your mani-pedi on?  (And be honest:  does it tickle as much as I think it does?)

Posted by Kerri Sparling at 09:40 AM | Permalink | Comments (76)

In the years I've attended CWD's Friends for Life conference, I always came away with this appreciation for what the conference provides for kids with diabetes, and their parents.  Kids - a whole bunch of them - running amuck and clad in green bracelets with pump tubing flapping from underneath their t-shirts ... it's a place where these families hopefully feel normal, and safe, and understood. 

But I'm not a kid with diabetes.  I'm an adult.  (I checked, and it's true: adult.)  I always felt welcomed at past FFL conferences, but people constantly checked for the kid at my side, because the "child with diabetes" surely couldn't be me.  (And then there was that time that the registration lady thought Sara(aah) was my child with diabetes, wherein my head exploded.)

Growing up with diabetes isn't hard.  It isn't easy.  I can't assign adjectives to it because it's all I've ever known, so growing up with diabetes is exactly synonymous to "just plain growing up."  My friends didn't have to take injections or chase NPH peaks, but we were in the same classes and rode the same bus and went on the same field trips, so we were "the same."  The difference, at that point in my life, was in what my parents had to do. 

Adulthood with diabetes is challenging, sometimes.  I had the support of my parents and my PWD friends at Clara Barton Camp when i was growing up, but once I was spit out into the real, grown-up world, things got more complicated.  I was on my own, following my own path, but I needed to bring along this bit of pancreatic baggage on the journey.  Even with my parents, and my friends, and my significant others along the way, I still had that nagging feeling of loneliness.

Except there are those moments when I'm surrounded by "my own kind."  And those moments are incredible.

This past summer at Friends for Life, there were a lot of us.  A whole pile of adults with type 1, found in sessions together, and strolling through the exhibit hall together, and corralled around a table into the wee hours of the morning; talking and testing and BEEEEEEEP!ing and despite our difference in opinion and background, we are all "the same."

We felt normal. And safe.  And understood.

It feel so good to talk about depression.  It felt so good to talk about the stress and guilt of aiming for, but rarely reaching, those goals set by healthcare professionals.  Even though I couldn't stop crying, it felt good to talk about parenting with type 1.  When someone's pump or CGM beeped, it felt good that fifteen different people reached for their pockets at once (only to realize it was - gasp! - just a cell phone).  Empowerment comes in many forms, and at the Friends for Life conference, for me, it came in the form of my fellow grown ups with type 1.  They are doing this, and I can do this, too.

Children with diabetes grow up. That's the point, right? - to have your child grow up happy and healthy and safe.  Children with diabetes become adults with diabetes.  There are already discussions in place about what adults with type 1 want to hear about next year.  Adults with diabetes finally have a place to call home. 

Thank you, CWD, for not letting your name limit your reach.

Posted by Kerri Sparling at 11:06 AM | Permalink | Comments (13)

Denise Jonas is the mother of a kid with diabetes, only her kid with diabetes happens to be Nick Jonas (known in the teen circles as "OMG Nick Jonas," first name "OMG").  Denise recently stepped in as celebrity spokesmom for the Disney Online and Lilly Diabetes collaboration I (and lots of others) blogged about this morning, and she was able to take a few minutes out of her whirlwind media schedule for the Once Upon a Time Contest to chat with me on the phone.  Gracious, kind, and definitely not in denial about the challenges of life with type 1 diabetes, Denise is as sweet as she seems.  Pun sort of intended, I guess.  ;)

KERRI:  Thanks for taking the time to speak with me, Denise!  When I was diagnosed with diabetes, support was only within my zip code.  Things are, thankfully, different now.  When your son Nick was diagnosed at age 13, where did you turn for support in those first few weeks?

DENISE:  At first, most of our support came from the hospital.  The medical staff that surrounded us in New Jersey were tremendous.  We had three days of training, and educated us about everything, even about our emotional health.  Everyone around Nick was trained to check him and administer his insulin.  Early on, I consulted mostly with her nurse for information.  But my sons are from the younger generation, and my other two sons immediately went online and found out as much information as they could.  They were scouring for information.

For Nick, he just wanted to know who else had diabetes.  "Who are other celebrities who have type 1 diabetes - give me a list," he asked after his diagnosis.  Only I didn't know of any.  We knew about a lot of athletes, but not many other public figures.

KERRI:  As the mom of a person with diabetes, the worry doesn't stop even though your son is now managing his own care.  How did you let go a little and help him take the reins on the control of his diabetes?

DENISE:  I have to say, if you know Nick, this is the person he's always been.  He's an old soul.  He's always taken the reins with his life.  We all, as parents, have to learn how to let go.  It's hard.  Diabetes affects those who can handle it.  I've always said that about my son - he can handle this.

KERRI:  I know that my mother and I battled incessantly about two things growing up:  boys … and diabetes. How do you maintain a good relationship with Nick when it comes to his diabetes management, and what advice would you have for other parents or caregiver?

DENISE:  It's hard to parent.  You always have to remain a parent and not try to be something different.  You're always the parent.  But don't be afraid to be concerned and care and to inspire.  Try not to let anything limit [your child].  Which is why I believe in this partnership.  The inspiration that is being offered is amazing.  That's why I believe in this. 

KERRI:  Which is the perfect segue to my next question.  Even though both your son and I are now "grown ups" (technically) with diabetes, it's still nice to have fun and relatable role models.  How do you feel about the addition of type 1 diabetes to Coco's character?  What was Nick's reaction? 

DENISE:  Nick is always in support of an influence encouraging awareness of type 1 diabetes.  We meet lots of families with younger children who want someone to identify with.  I've had several parents tell me [laughs] that their kids have dressed up for Halloween as Nick. 

KERRI:  That is what makes Coco and Nick so inspiring.  Not that Nick is a cartoon character, but he and Coco have made having diabetes cool, you know?  Something that kids think is cool.

DENISE:  That's exactly it.  I believe so whole-heartedly that this is the most exciting thing I've seen in a long time.  The education [for families of the newly diagnosed] is limited to a certain extent.  Medical information is absolutely important, but day-to-day encouragement of how to live with this every day and deal with emotions and find the magic in things is needed, too.  This is why I wanted to partner [with Lilly and Disney] on this project.  To help people find the magic.

KERRI:  And can I just say that I think it's awesome that the prize for the winning contest entry helps bring a family to next year's Friends for Life conference?

DENISE:  It is amazing.  So truly amazing.  [And at that point, I could honestly hear her smiling, even over the phone.]

Thank you to Denise Jonas for her endless support of the diabetes community.  You can click here to learn more about the Once Upon a Time contest.  Hope to see the Jonas family at #FFL12! 

Now if only she could get Nick to visit the ladies at Clara Barton Camp ... I mean, he never had a chance to attend diabetes camp.  I'm sure they'd love to have him stop by.

Posted by Kerri Sparling at 01:49 PM | Permalink | Comments (10)

At Friends for Life, several members of the DOC had a chance to meet up with representatives from Lilly (one being the same guy who rode over on the Magical Disney Bus with me from the airport, and he had the most impossibly teeny carry-on bag.  Only a guy could pack business clothes for a week into one, single carry-on.  /digression and also, hi, Adam) to discuss a very cool partnership between Disney and Eli Lilly.

Oh yes, that's right:  Disney has it's own PWD. Her name is Coco.  She's a monkey. (Or "MWD," as Leighann so aptly put it.)  

Others have written about Ms. Coco and her diabetes bracelet of animated glory, but I wanted to chime in and add my excitement.  I grew up with images of Mickey Mouse and Donald Duck as parts of my childhood, and I knew plenty of kids who went to Disney World on vacation.  But I didn't know anyone else who had diabetes.  Now, diabetes has infiltrated the mainstays of childhood memories by becoming part of the Disney gang.  Coco, a monkey who clearly has the same affinity for bows as my daughter, is right there in the thick of the Disney mainstream, and sporting a busted pancreas.  This is awesome, because it gives little kids with diabetes a cartoon character they can identify with, and feel cool about. (And I'm secretly thankful that Mickey or Minnie weren't 'chosen' to have diabetes, since mice are always managing to get cured randomly.)

Part of this collaboration between Lilly and Disney is an update to the Disney Family.com website, featuring editorial and information specific to families with type 1 diabetes.  This, to me, is just as cool as that crazy MWD.  Disney is extremely well-known (see also: understatement of the year) and to have type 1 diabetes featured prominently in their space is nothing short of remarkable.  This is mainstream attention to a disease that was once sorely misunderstood and ignored.  (Now we're just slightly misunderstood and social media'd.)   Now you can visit www.Family.com and check out their diabetes offerings, anchored by the tagline, "Everyday challenges; everyday magic." 

And lastly, as part of this Disney/Lilly partnership (henceforth referred to here as "Dilly," because I can't type those two words over and over again without getting distracted), there's a contest.  "Once Upon a Time" is all about sharing the real stories of life with diabetes, and bringing more families into the magic of Friends For Life.  From the website: 

"Lilly Diabetes and Disney Online have joined forces to help families with children who have type 1 diabetes see the magic that exists in everyday moments.  It's all part of a new initiative designed to provide understanding and support to families affected by type 1 diabetes."

What happens next is an essay contest where parents of kids with diabetes are encouraged to submit an essay inspired by their child's experience with type 1 diabetes.  These entries will be judged, and the winning entry will score air fare, hotel, and conference registration for a family of four to attend the 2012 Friends for Life conference.  

To top it off, Disney and Lilly have added some celebrities to help raise awareness of their Once Upon a Time contest.  One of these celebrities is the mother of OMG NICK JONAS himself, Denise Jonas.  I'll be speaking with her this afternoon, and will share her take on all of this with you later today!

I am impressed.  This isn't just a drop-in-the-bucket kind of advocacy effort so a company can check their "We did our diabetes advocacy due diligence" box.  This is real.  A real Disney character with type 1 diabetes.  A real chance for a family to enjoy the magic of both Disney and Friends for Life.  I love this.

Obligatory disclosure:  I attended an information session hosted by some members of the Lilly team, and they filled me and some of my fellow PWDs in on this partnership information.  Per usual, my opinions are my own.  As are my typos.  

Posted by Kerri Sparling at 08:19 AM | Permalink | Comments (13)

After Abby wrote about her diabetes-themed tattoo, there were a lot of comments from people either yaying or naying the idea of a tattoo.  I received a few emails with some photos, but the BEST photo I've seen so far is from a mom in Quebec, Canada.  Camille is the mom of a kid with diabetes, and she and her husband got inked in solidarity for their son. 

From Camille's email:  "My hubby and I both got inked last October in support of our four years old son Jacob who was diagnosed [in] January 2010. He started pumping in August 2010. One day he said to me, ''Mom, am I the only one in the world who has a pump?'' I knew he felt alone on his diabetes planet so we decided to join him! I told him that we too would get pumps, that T1 is part of who we are and that the love we share is way stronger than D!"

Two dedicated parents, and one cute kid with a great smile.

If that's not the most badass advertising Medtronic will ever get, I don't know what is.

Posted by Kerri Sparling at 09:32 AM | Permalink | Comments (35)

If you don't know Captain Glucose and Meter Boy, you are about to have your animated world rocked.  This dynamic duo, aka Bill Kirchenbauer (Captain Glucose) and Brad Slaight (Meter Boy), are tireless advocates for the diabetes online community. They rap.  They advocate for why glucose meters matter.  And today, they're premiering their new PSA here!

There are many important questions in the world today, like: Will there ever be peace in the Middle East? How will America pay off the deficit? What the heck is that thing on Donald Trump's head? We have no answers for any of those, but we can answer the question we are asked the most often: What is a diabetes superhero?
 
Years ago when we created the characters Captain Glucose and Meter Boy: The Diabetes Duo, we patterned them after iconic do-gooders like Batman and Robin, The Incredibles, and other non pancreas challenged comic book superheroes. We both have diabetes and being in the entertainment industry we felt that we could best contribute to diabetes awareness by using our creative talents. We came up with a TV pilot to star in but our agent said no one was interested in a sitcom about diabetes called "$#*! My Meter Says" so we decided to make a short humorous PSA (public service announcement) instead. We believe that basic diabetes information is more accessible if it's presented in an entertaining manner. At first we played the characters as live-action real people and we dressed up in handmade costumes, which really made our friends and family question our sanity. But we have since changed them to animated characters with special powers. We did this for two reasons: 1) animated characters have more of a visual impact, and 2) when you're a cartoon you never age or put on weight! 
 
Since first creating Captain Glucose and Meter Boy, we have come to realize that there already exists many real life diabetes superheroes. They can be found in the diabetes online community, or more acronymically appropriate, the D.O.C. They don't wear tights (good thing because those can really chafe) but they are on a similar mission to share their knowledge and help others. They are not in a lab looking for a way to cure "mouseabetes." These real life diabetes superheroes are at their computers spreading the word, writing blogs, supporting those in need, representing all of us at conferences, and fighting the good fight day in and day out. It is a long list of names that is growing faster than diabetes itself and they work tirelessly to help others without ever asking anything in return. Theses D-heroes are making a difference in the lives of many.
 
Dr. Seuss said in The Lorax, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." (He's good, but probably didn't write any stories about our disease because there aren't enough words that rhyme with diabetes.) His touching poetic line applies to the many people in the diabetes online community we've met who do care a whole awful lot. They are willing to share their knowledge, experience, successes, failures, hopes, fears, dreams, tears, laughter...and on occasion even something as effectively simple as a Diet Coke. Captain Glucose and Meter Boy's motto is "Be Your Own Personal Diabetes Superhero." These amazing  people help make that an achievable goal for everyone.
 
So now whenever someone asks us what a diabetes superhero is, we tell them to go to their P-C or M-A-C and log on to the D-O-C. That's where all the real diabetes superheroes hang out ...just don't expect them to be wearing costumes!
 
Here is our new animated diabetes PSA about fighting apathy. It introduces our newest team member Dee Dee (a.k.a. D-Girl). We are honored that Kerri, one of our favorite diabetes superheroes, is letting us "world premiere" it here on Six Until Me.

-- Bill Kirchenbauer (T2) and Brad Slaight (T1)

*   *   *

(If YouTube is on the fritz, you can also check out the video on the duo's website.)  Thanks for helping to raise awareness and defeat apathy, guys!!!  

Posted by Kerri Sparling at 08:30 AM | Permalink | Comments (21)

During the Joslin medalist meeting last week, I didn't say anything.  I wasn't presenting or doing any kind of networking.  I was invited as "media" (totally in quotes) but I attended as a grown-up child with diabetes, hoping to continue on that path of growing up. 

I sat next to a woman named Eleanor (my beloved grandmother's name) and she had been living with type 1 for 58 years.  She asked to see pictures of my daughter.  She offered me a cough drop after I spent a few minutes trying to clear my throat, and she stuck her hand out to take the wrapper, spying my pump tubing jutting out from my pocket.  "I don't wear a pump," she said.  "I do just fine with my needles.  And you appear to be doing just fine with your pump.  Do you need another cough drop?"  I almost hugged her. 

As Dr. George King, director of research at the Joslin Clinic, gave his opening remarks, quotes from the medalists were flashing up on the screen behind him.  "I have learned to understand that perfection is not possible."  "Tomorrow is another chance to do better."  "Say YES to every opportunity."  

These people were incredible because of what they've accomplished with type 1 diabetes.  Hilary Keenan, PhD and pat of the Joslin biostatistics team, stunned me with the stats on this group.  Their average A1C is 7.3%, with an average diagnosis age of 11 years old.  Their average age is 70.  The average duration of their diabetes is 59 years.  The most common ages for their type 1 diagnosis are age 6 and age 12. And this group of medalists have a very low rate of proliferative retinopathy and kidney disease. 

Photo credit to the Joslin team

Not only are they brilliantly healthy, despite their diabetes, but they're also insightful and wise in that way that only decades of life can bring.  They stood up, one at a time, and introduced themselves to the group.  Their stories made me laugh out loud (like when the lady was talking about her CGM and her pump, and then someone's phone rang and she stopped to ask, "What kind of meter is that?" and the other woman answered, "It's a phone?"), made me grateful, and made me cry openly in this room of strangers.

"Eliot Joslin was my first endocrinologist.  He wore a charcoal gray suit and a crisp white shirt.  And the first time I met with him I said, 'Oh my God, he's an undertaker!'"

"Diabetes has given me so many opportunities.  I had a chance to spend time with Bret Michaels."  Pause.  "But I didn't know who he was.  Now I do, though!"

"I have seen many doctors retire.  I don't have that option, so I keep finding new doctors."

One man talked about the party he threw for himself when he reached 63 years with type 1, as part of his 70th birthday party. "I handed out certificates to the people who helped me get here.  And I had one for Eliot Joslin that said, 'Helped to keep me alive, despite myself.'"

"We do our best.  And to God trust the balance."

"I was diagnosed when I was one.  My doctors told my parents I would die in my early 20's.  My parents didn't tell me this until I was, oh, well into my 50's."

"I'm here today, really, because of my wife," said a man with shaking hands.  

"Today, I brought with me my beautiful daughter.  Her name is Joslin. I named her for this wonderful place."

Photo credit to the Joslin team.  They also get credit for taking care of me and my friend here.  :)

But one man broke my heart entirely when he quietly stood up and addressed the group of his peers, his fellow PWDs with more than 50 years under their belt.  "One year, I asked the woman behind the counter how many of us there were.  How many medalists?  And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years.  And it wasn't until I was driving home that I realized what we're up against."  He paused and put his hand to his collar, absently touching the ribbon on his medal.  "And that is when I cried."

This whole experience was so inspiring, so humbling, and made me so aware of what diabetes has the potential to affect in my life.  I was born decades after these people were diagnosed, so I know things have changed for the better, as far as treatment options.  I know the outcome for people living with type 1 diabetes has improved by leaps and bounds.  This group of medalists began their journey with glass syringes and twice-yearly finger sticks.  We are a new generation of people with diabetes, and hopefully a healthier one. 

In 25 years, I plan to celebrate my 50 years with diabetes.  I can do this.  We can do this. 

[To catch a video of the Joslin medalists telling their stories, check out this post.]

Posted by Kerri Sparling at 11:00 AM | Permalink | Comments (32)

Over the weekend, the TCOYD conference team visited Albany, NY.  I was hoping to make it to this conference, but ended up all tangled in life stuff.  (Like a Sparling spiderweb.  Ew.  Spiders.)  Thankfully, Abby was nearby and able to spend the day checking out her first TCOYD event.  (And she got to meet up with the fabulous Karen and Caroline, and several other members of the DOC.)  Here's Abby's take on the conference.

This past Saturday, I attended my first Taking Control of You Diabetes conference in Albany, NY.  It was really amazing, and I'm going to try and recap it in one blog post.  Which is going to be a challenge, but I'm feeling pretty motivated after seeing Dr. Edelman and Dr. Polonsky both speak as part of the conference.  AND I have pictures.  Let's get started!

The recurring theme that was pointed out by Dr. William Polonsky was that there isn’t anyone who doesn’t want to live a long, healthy life. As the day went on, I kept thinking about this and it really resonated with me. No matter how frustrated we get with diabetes, or our doctors, or our diabetes-police support groups … we all want to live a long and healthy life. This lead to the theme that Dr. Steven Edelman repeated;  being educated about how to take care of yourself isn’t enough – we need to be “activated,” or motivated to take action in our own health.

The morning session presented by Dr. Polonsky was called “Balancing the Emotional Highs and Lows of Diabetes.”  I cannot express how refreshing it was to hear a medical professional stand in front of a room full of people and tell us that if we feel sad, defeated, angry, hopeless, and tired because of our disease, we are in the majority and that is normal.  82% of people with diabetes worry about complications.  (My guess would be that the other 18% are under the age of 6 and don’t know what complications are.) I worry about complications every day. Every blood glucose reading I get over 200 mg/dl, I have this lightning-fast thought of “Ugh, I hope my eyes/kidneys/toes/heart/you name it are ok right now.” 

Dr. Polonsky offered up a lot of insight that struck a nerve with me. “We have too many labor saving devices that make it easy to be sedentary – it’s easy for us to be inactive.”  He mentioned this as he was explaining that it’s easy to make excuses not to exercise, but not in a way that assigned blame.  He also said that “having unrealistic goals sets you up to feel like a failure.” We should make goals that are small, and attainable, and don’t require a totally lifestyle change in one day. After reading Kerri’s post re: the goal bingo card, I’ve been really trying to set attainable goals for myself and it totally works! I used to be one of those “Will run a 5k in 3 months or else” kind of goal setters, and that does NOT work.  I left that session feeling like my sometimes passive approach at diabetes is not only normal, but expected and fixable. 

The DOC, representing at TCOYD.  Holy initials!

1. Dependent children are guaranteed coverage through their parents until age 26. This is the one that most directly affects me, and I have to tell you that I know from experience this is misleading.  Medical insurance is extended. Dental, vision, and prescription aren’t necessarily included.  This means that my dentist appointment last week was my last until I get my own insurance. It also means that my eye doctor appointments are covered, but only because they are considered medical necessity because I have diabetes, and I have to pay for my own glasses/contacts from now on. (Mind you, this is through my personal insurance, I’m sure the coverages vary from person to person.) 
2. There are state and federal laws that evaluate insurance rate increases. This means that they can’t just raise rates because they want to.  Nice to see that kind of check-balance in place for once.
3. The medical loss ratio. There is a percentage of money that is required by insurance companies to be spent on medical things. So for large group insurances they have to spend at least 85% of their money on medical, and not on salary, advertising, etc. This seems cool to me, but it might have been this way forever? Like I said, I do not speak Legalese.
4. Annual limits will be $0 by 2014, and lifetime limits are banned.  This has something to do with the amount of money people are capped at paying out of pocket, I think.   Anyone able to clarify this one? 

Posted by Abby (the Person) at 09:37 AM | Permalink | Comments (14)

What fun are random links if I can't share them with you guys?  These sites have been emailed to me, Facebook'd (what a crap verb), and Tweeted.  And now I'm channeling Bono (and wishing I had picked him up when he was hitchhiking in Vancouver) and bulleting the blue sky:

• The International Diabetes Federation is making a video compilation in time for World Diabetes Day, and they're getting a jump on things by starting now.  They are looking for videos on "how you act on diabetes," which makes me want to participate in a round with Kabuki Doug, but I'm excited to see how this plays out.
• And you can't mention video in this community without calling back to the You Can Do This Project.  Have you signed up?  Have you recorded your video?  No better day than today!
• Unrelated to anything diabetes, my mother and I spent over an hour trying to assemble this shiny little nightmare - the Little Tikes Cozy Coupe.  The instructions are written in Japanese (truly - we never found the English translation) and you have to beat on this thing with a hammer numerous times before it somehow slides into place.  Thankfully, BSparl woke up this morning to find the car in our living room and she was ecstatic.  
• There's a chat on Thursday night over at the ChronicBabe community, talking about being "real people sick."  To join in, you'll need to be a ChronicBabe member, and be sure to sign in at 9 pm Eastern Time over in the chat room.
  
• Stuff Sick people Have to Put Up With:  A Tumblr dedicated to being "your window into a world of bureaucratic, patronizing bullshit."  Pretty direct, that.  (And I do love the guy with the pennies.)
  
• F*$k Yeah Diabetic Cat:  Can't quite figure out what's going on with this one, but that Wilford Brimley cat cracks me up.  He looks so curmudgeoned and in sore need of a hairdo update. 
• And lastly, if you'd like to dance with BSparl and I in the morning, we usually rock this song after she gets up from her morning nap.
  

Posted by Kerri Sparling at 10:13 AM | Permalink | Comments (10)

To be a Joslin Medalist, you need to mark 25, 50, or 75 years with diabetes.  (Well, technically, you get a certificate at the 25 year mark, but it's definitely a milestone to celebrate.)  And over the weekend, I had the opportunity to spend the day with Joslin's medalists who have spent over 50 years with type 1 diabetes. 

I was invited as a member of the "media," but it was a strange experience, being "one of them," but only halfway there.  ("You're a nice kid, but you're still a rookie in this crowd," one woman said, flashing her medal and her smile at the same time.)  These generous medalists allowed me to listen to their stories, and offered a few sage words of advice into my video camera.

(Best response that didn't end up on camera:  "That's a video recorder? I have glucose meters bigger than that!")

While I compile my notes, let this video suffice as evidence that we can do this.  And seeing living, breathing, laughing proof of that is an amazing thing.

Posted by Kerri Sparling at 08:42 AM | Permalink | Comments (57)

People within the diabetes community are strong, resilient ... and apparently pretty creative on the lyrical tip.  This video was sent to me by a reader, and even though the visuals on it are just the lyrics, it did crack me up (and she's quite the songbird)!  Created by Denise, who blogs at My Sweet Bean and her Pod, this song is now part of the diabetes-themed song library.

"We can rock a SWAG for any popsicle." and "Pancreas stand-ins, now put your hands up" may be among the best diabetes-lyrics I've heard since ShugaSheen's debut.

Posted by Kerri Sparling at 09:26 AM | Permalink | Comments (18)

Dear Littler Me,

I wish you'd known you weren't alone.  That even though you didn't have a bunch of friends with diabetes (YET) when you were growing up, you still had lots of friends.  And a family that loved you.  And people who didn't understand exactly what it meant to be "low" or "high," but they wanted to, and they tried.

I wish you had known that there were other kids just like you.  It wasn't until you spent your summers at Clara Barton Camp that you realized just how normal diabetes was for some families.  That some kids woke up every morning, just like you did, and shot up.  Or that some kids were hounded by their parents to "just let me check your pee for ketones, okay?"  

I wish you had known that doctors lie.  That when they said, "This won't hurt a bit," it was going to hurt anyway.  That when they promised not to draw blood from your arm unless your parents were there, they lied and instead stole into your hospital room at 1 am and woke you up with their midnight vampirism.  I wish you had known that when they said, "Kids may not be in your future," you didn't have to believe them.

I wish you had known about the impact of sorbitol and other sugar-substitutes on your little kid tummy.  Dude, that stuff will wreck you up right proper.  And for days.

I wish you hadn't written those notes on the backs of school quizzes and then stuck them into your Bible for safe-keeping.  The ones that included long diatribes about how some girls in your class didn't understand.  Or about how you were 385 mg/dl and you had eaten the cupcakes you claimed to have ignored, and you wish you felt brave enough to confess to your mom.  I wish I didn't find those notes 18 years after the fact.  I wish I hadn't remembered how isolated and guilty and scared I felt at those times.

I wish you had known that, despite the excuses you wanted to make, that every day matters.  I'm glad you know it now, but I need you to remember it more.  Every day matters, Kerri.  Yesterday may not have been the best diabetes day, but today can be better.  Stress and work and vacations and traveling and motherhood will always be there.  You need to learn how to dance between those raindrops and still give your health the attention it deserves.

I wish you had known that pumping insulin was going to be an easier transition than you thought.  I know you were scared about having an "external symptom" of diabetes, and worried about the implication of "robot parts" on your dating life, but it wasn't an issue at all.  (Your husband hasn't ever known you without the pump - who would have thought?!)  

I wish you had known, in that moment of diagnosis, that it was going to be okay.  There are ups and downs with everything, and diabetes is part of that ebb and flow, but there is life to be lived - a good life - even with diabetes.  You have some extra issues to deal with as a result of this disease, but you will be okay.  Remember that, especially when you feel overwhelmed now, as an adult.  Don't lose hope, even in that cure that's been promised to you five times over now. And don't, for crying out loud, let any kind of pity party overtake who you are.

I wish you had known that you CAN eat that, and you CAN do that, and you CAN work there, and you CAN love him, and you CAN be loved back, and you CAN be happy.  So go DO and BE, child.  Enjoy every minute, because it goes by in a blink.

Love,
Future You

(This post is part of the Second Annual D-Blog Week.  To participate, check out the details on Karen's blog!  And thanks, as always, to Karen for organizing such a great advocacy effort.)

Posted by Kerri Sparling at 10:04 AM | Permalink | Comments (35)

How do you keep your diabetes green?

Posted by Kerri Sparling at 09:04 AM | Permalink | Comments (20)

With all these diabetes blogs and fundraising walks and keynote speakers and advocacy unicorns, there's a lot going on in the world of diabetes.  Jumping into a diabetes advocacy role may seem as daunting as being a Yankees fan when you're the editorial assistant to a die-hard Red Sox fan (hi, Abby).  But being an advocate for diabetes doesn't mean you have to blog or speak at events or raise thousands for walk teams.  You can raise a lot of awareness in what may feel like the smallest of ways, but can make a difference for just one person.  And one is all it takes. 

This month's Life, Uninterrupted video is about being your own advocate.  And it features Sprinkles.  Because unicorn puppets have a place in this, too.  ;)

Posted by Kerri Sparling at 08:00 AM | Permalink | Comments (14)

The DOC, when acting in unison, is a LOUD voice.  Thanks to everyone who wrote letters to the MTV casting agent for True Life: I Have Diabetes (including, but not limited to, my red-headed friend Nicole in CT.  Thank you, Aunt Spazzy!!), the casting call has been updated to something a little less offensive, and many of us have received this form letter from Miscellaneous Media:

To Whom It May Concern,

Thank you very much for your note. I apologize for returning it with a form letter, but we've been getting so many emails from your community regarding our clumsily written casting call that it would be impossible to respond to everyone individually.

First of all, I'd like to apologize for not being more articulate in our casting call. We didn't mean to offend anyone with diabetes with the wording of our post. These casting calls aren't written to define the exact types of stories we plan to cover, they're meant as a starting point to begin a dialogue with potential subjects. It's a very general way to get a conversation going with people who want to write in and share their story with us.

For this episode, we are looking for three people who can be our tour guide for what it is like for them to live with diabetes. It's hard to say whether our subjects will have type 1 or type 2, since we haven't begun filming or chosen final subjects yet. But with True Life, it's always best to find folks from all walks of life who have a diverse set of circumstances.

Because of all of your enlightening emails, we have changed the wording of our casting call so that it asks whether people writing in are type 1 or type 2. We have done the research, and we know what the differences are, but we're still not the experts. It's the people who tell their story, from their point of view, who are the best experts on what it means for them to have the type of diabetes they have.

The bottom line is that we just want to make a great documentary about what it is like to be young and living with diabetes. And right now, it's impossible to say what points will get made in this episode since we haven't cast subjects yet.

Thank you for all of your emails, and again, my sincerest apologies.

All the best,
Patrick
Miscellaneous Media

Spreading the word about REAL life with diabetes, not just the extreme moments.  I'm very hopeful that the diabetes episode of True Life shows what living with type 1 diabetes is really like.  (Now how do we get Abby on this episode?  ;) )

Posted by Kerri Sparling at 03:04 PM | Permalink | Comments (14)

Today is Diabetes Alert Day.  What does that mean?  (Here - let the ADA help explain.)  Diabetes Alert Day points a spotlight on type 2 diabetes, encouraging those who are living with type 2 to take control and for those who may be at risk to get tested.  I'm really proud to be hosting my friend Rachel Baumgartel's words on SUM today.  Rachel is a passionate diabetes advocate with a type 2 voice, and you can find her online contributions just about everywhere:  on her personal blog Tales of Rachel, at Diabetes Daily, 'midterning' at Chronicbabe, and participating in the Diabetes 365 project on Flickr. 

She's offered to post about her own diagnosis with type 2, about being young and living with a chronic illness, and her encouragement to anyone who may be at risk to get tested.  

Posted by Kerri Sparling at 09:20 AM | Permalink | Comments (12)

As a kid, I wasn't an advocate for type 1 diabetes.  I was a kid.  I went to diabetes camp (CBC 4 LIFE) but that was the extent of my involvement with any kind of diabetes community.  It wasn't until I was out of college and feeling like I existed on a diabetes island that I began to crave interaction with and understanding from other people with diabetes.  So, at Chris' suggestion, I started a blaaaaaagh and everything just got all sorts of exciting.  Namely, I had finally connected with other people living with diabetes. And it felt gooooood.

Now that there is an established online community for people with diabetes (PWDs, caregivers, and loved ones alike), there are a lot of opportunities for engagement and advocacy.  The DOC isn't limited to adults living with diabetes; there are blogs written by parents of CWD, spouses and significant others of PWD, and even doctors who care for PWD.  And it's not even limited to people who are interacting online - the diabetes community is offline, and on.  And after meeting with the new CEO of the JDRF, Jeffrey Brewer, last week in DC, I realized once again that we're all in this together.  This guy gets it.  His kid has diabetes, making me realize that Jeffrey is just like my mother in that he wants what is best for his child. 

But what cracked me up is how Jeffrey realizes that those of us who are adults with type 1 are a version of what his son may grow up to be.  We're still living with diabetes, we have "real lives," and we aren't perfect.  He and I were talking and the concept of "a perfect diabetic" came up in conversation.  During the course of our exchange, Hasan Shah (the Grassroots Advocacy Manager at the JDRF) came up and asked if I was really carrying a unicorn puppet around with me. 

(How do these rumors start?)

"Yes, I do."  I rummaged around in my purse until I was able to grab Sprinkles by the yarn mane.  "Here.  This is the DOC Advocacy Unicorn: Sprinkles."

Jeffrey was a little taken aback.

"What's that, again?"

"The advocacy unicorn.  Because I have this belief that we make diabetes look a little too easy sometimes, and it's important to remind people that type 1 diabetes isn't always rainbows and unicorns.  And that despite the fact that we oftentimes don't look sick, we still deserve a cure."

(And if there was ever a time I wish I had captured the look on someone's face, it was at this moment.  A mix of "Ah ha" and a total "Are you low?")

"Makes perfect sense," he said.

"I don't always carry puppets around with me." I replied.

But this goes to show that the people who are involved with the JDRF don't just "get it."  They "are it."  And they aren't alone: there are plenty of people who are involved with many different diabetes-related organizations who are pushing for and passionate about progress towards a better life with diabetes and a real-deal cure.  Diabetes advocacy isn't limited to one organization or one mission:  any steps towards a better life benefit us all.  Because you can bet your ... everything that I want to be as healthy as possible for as long as possible.  

This past weekend, I was the Fund a Cure speaker for the Rhode Island JDRF's second annual Hope Ball, and had the honor of speaking to that crowd.  Between the Government Day experience and attending the Hope Ball, I've been reawakened to the impact that the JDRF has on people with diabetes.  And I'm not talking about the Bag of Hope - I mean the real research and government relations that are changing the landscape of our diabetes collective.  Not just for kids, but for the parents taking care of them, and for the adults those children will hopefully become.  

It's a group effort, this diabetes thing, and I think that the JDRF and the online community can work together to effect great change.

Diabetes advocacy isn't limited to one organization or one research ambition.  What organizations do you dedicate your advocacy time and efforts to, and why?  Do you find yourself donating your time to a broad range of diabetes efforts? 

Posted by Kerri Sparling at 09:20 AM | Permalink | Comments (12)

I accomplished a full year of Diabetes 365 back in 2008.  It was the year I was getting married, and looking back, I love that I have a year's worth of photos to mark the fun buildup to that huge moment in my life. 

I tried again in 2010 in efforts to chronicle my pregnancy and the chaos of new motherhood, but failed miserably.  Once the baby arrived, my camera only had a lens for BSparl.  Diabetes photography fell by the wayside.

So ... glutton for punishment that I am, I'm giving the Diabetes 365 project another go for 2011.  I'm making today my starting point, and hopefully next spring I'll be loading up the last of the photos and enjoying a milestone of photographic success.

... or I'll be writing some other post about how I bailed on the project again.  We shall see.  Only time and the camera will tell.  

My 2011 attempt kicks off with an item that's near and dear to my heart:  coffee.

Coffee and I go way, way back to when I was a breakfast waitress in college, slinging eggs and refilling people's coffee mugs while wishing away hangovers.  (College was a fun, but exhausting, time.)  Now, I start the coffee up each morning while I make BSparl's bottle.  My, how things have changed.  

If you have a camera and a sadistic desire to attempt this project, join me on the Diabetes 365 Flickr pool!  And you can following this year's attempt on the SUM Diabetes 365 page.  Happy shutter-snapping!

Posted by Kerri Sparling at 01:30 PM | Permalink | Comments (5)

I spend a lot of time writing about diabetes within the diabetes online community, but I don't have a lot of opportunities to bring diabetes advocacy outside of certain parameters.  I've done some guest blogging for non-diabetes sites, but for the most part, I speak about and to the diabetes community.  Sometimes my advocacy efforts exist within a bubble. 

But last week, I had a chance to step entirely outside of my comfort ... bubble? and speak with woman bloggers who aren't living with or caring for diabetes.  It's very humbling to sit in a room with women who have lost a child.  Or who have traveled to Africa to work towards eliminating pediatric AIDS.  Or who have made a difference for women who are dealing with depression or anxiety.  Women who can make you laugh while they describe the darkest moments of their days.  Women who can find something beautiful with just a click of their shutter.

On Thursday, I traveled to New Jersey to meet with members of the Johnson & Johnson team, the Edelman PR team, and some very powerful bloggers in the parenting space.  I was honored and humbled to be in the company of Alice Bradley, Karen Walrond, Heather Armstrong, Ana Roca Castro, Catherine Connors, Katie Allison Granju, Jennifer Hutcheson, Nirasha Jaganath, Isabel Kallman, Jyl Johnson Pattee, Ellen Seidman, Heather Spohr, and Allison Worthington.  An intimate but inspiring group gathered (and dubbed 'a salon') to talk about using social media to contribute to social good. 

When it came time to introduce myself to the group, I was shaking with nerves, not sure how I ended up in this room full of change-affecting women.  (They DO know I blog about my cats, right?  I mean, really.)  I stammered through an introduction, unsure of what to say or how to measure up to these fellow bloggers, but hoping that they'd reweave my words into something that properly represented the passion and power of the patient blogging community.  After introductions, we talked.  All day.  Stories were shared; people laughed because it felt right and because it filled a moment where tears would have otherwise flowed.  (But tears flowed at times anyway.)  We discussed topics including preterm childbirth, pediatric AIDS, using social media to help educate new moms, and how we, as social media influencers and strategists, can impact positive change in these areas. 

And these discussions really embedded themselves in my brain, because it became clearer and clearer that blogging is more than just a web page filled with musings.  A blog, and a blogging community, is a vehicle for change.  Diabetes bloggers are helping to raise awareness and funds for a disease that much of society ignores or misunderstands.  I think that diabetes bloggers make a big emotional difference for ourselves and our fellow PWDs, but I do think we can do more.  And after sitting with these really inspiring women, I'm both inspired and convinced that we CAN do more.

What, exactly?  I'm not sure, but there are a few ideas percolating in my brain.  I am tired of diabetes being a condition that is ignored by society as a whole.  Just because we don't look sick until we're dealing with serious complications doesn't mean we don't deserve a cure.  And just because many of us have grown up past the "children with diabetes" phase doesn't mean that our adulthood with diabetes should be written off as "easy" or unsupported.  The support I've received from the online community has been changed how I manage my diabetes and the emotions related to chronic illness, and I want everyone who is living with diabetes to have access to this kind of care. 

I left the meeting in New Jersey renewed as an advocate and amped up as a member of the patient blogging community.  And I can't wait to develop and implement new ideas with our diabetes online community.  More to come, but for now, I'm just INSPIRED.

Posted by Kerri Sparling at 10:08 AM | Permalink | Comments (16)

People living with and caring for diabetes have their own special language; it's a language that includes terms like "no-hitter" and "tsunami" that people without diabetes wouldn't understand, but those with it nod their heads and say "Yup.  Same here."  This dictionary is compiled from input from the fabulous diabetes community and is definitely a collaborative effort. 

Bring on the dTOES (Diabetes Terms of Endearment): Third Edition!!

A1C twins
Two PWDs having the same A1C within the same week of endo appts

"Are You Unplugged?"
How to intimately ask if your partner has unhooked his/her pump site.  A way of subtly asking if it's sexy time.

Baby Bear number
When your number is in target, or juuuuuust right
ex. “It's almost time for lunch, go ahead and do a stick. What'd you get? Hey, great, you're Baby Bear!”

Basaling
The act or process of working out kinks in the basal rates 
ex.  “I was up half the night basaling.” or “We're skipping breakfast today because we're basaling.”

Bat Belt
The belt of a PWD (person with diabetes) who has all their diabetic accoutrements worn about their waist.  May include insulin pump, Dexcom receiver, and that grappling hook thing Batman uses to climb over buildings.


Beeg
The oral version of the abbreviation "BG" (for "blood glucose")  
ex.  “I’m checking my beeg!”

Bionic parts
A method of referring to diabetes technology instruments.  These items are often found on the aforementioned "Bat Belt."

Bolus-worthy
Food that is enticing enough that we'd take a ton insulin for it, despite any blood sugar results
ex. “That chocolate-covered cupcake looks bolus-worthy”

BS-brain
aka "Blood sugar brain," the fog, agitation that seems to last all day and affects everything after a bad low or high blood sugar

Buddy Batteries
AAA Energizer pump batteries solely reserved for use in diabetes devices.  A lack of Buddy Batteries may result in an incident of D-Postal.

Case of the Ms
When your continuous glucose monitor graph looks like giant M's.  (Editor's note:  M's or W's.)

Case of the Shakies
A low blood sugar episode that causes shakiness


CDD
aka "Crappy Diabetes Day", when your blood sugar goes from 43 mg/dl in the morning, to 37 mg/dl an hour later, to 243 mg/dl at noon, to 321 mg/dl at 3 pm, back to 54 mg/dl at dinner, plus you might have an occlusion as well just to top things off.  See also: Gluco-coaster

Chaser
The bolus given when a PWD consumes a copious amount of food to treat a low blood sugar

Checka
A cuter way to reference a blood sugar check.  
ex.  “Time to checka your blood, mommy?”

Cluster-Beep
When you have to pull every single device out, from cell phone to CGMs, to figure out which one is beeping, buzzing, or just being a general pain in the arse. (It also applies to having to pull the same device out twice in 30 seconds)

D'Ambien experience
One of those middle of the night lows where you can't remember what you ate or drank, or how much, as well as any conversations you had. Quite similar to someone's night who takes Ambien.

D-Dumb
Term applied to people who just don’t "get" diabetes

D-Mom/D-Mama
The mother of a kid with diabetes, taking the disease on as their own.  See also:  Surrogate Pancreas

D-Postal
The act of lashing out as a result of societal misunderstandings of diabetes.  
ex. "You can’t possibly understand how hard it is living with diabetes, so I’d advise you to step down before I start beating you with my pump and a fist full of glucose tabs."

Diabadass
A PWD who does something awesome that non-badasses think diabetes should stop them from doing (e.g. having babies, biking across the country, playing in the NFL). See also: most members of the DOC

Diabetonese
The language of managing this madness! See also: all three editions of Diabetes Terms of Endearment

Diabuddy
A real life friend who also happens to have diabetes, too

Dia-
(can be an adjective, noun or verb) A prefix applied to any word when diabetes impacts said word.  Examples include "diafail," "diawin," and "diabadass."  Often found as Twitter hashtags and in the Clara Barton Camp dining hall conversations.
ex.  "I can't believe I forgot to bolus for the seven pancakes I ate for breakfast ... diafail!"

Diasecret
Those diabetes-related secrets that you have never told anyone

Diaversary
The anniversary of your diagnoses date, (aka the time you stick it to diabetes no matter what the blood glucose number is.  ex “We're having cake for dessert to celebrate your diaversary. You're 250? Then we'll just have to bolus extra.")

Disco Boobs
When a pump is hidden between a PWDs breasts, that moment of when it lights up and starts beeping, giving the chest area a look not unlike a disco ball.  See also: Iron Man

DOS Bag
aka "The D-Oh-Sh*t bag," the bag where a PWD carries around all of their emergency supplies (it goes everywhere) - extra infusion sets, insulin, extra strips, back up meter, juice, tabs, Glucagon, etc

Double Downing
When your continues glucose monitor graph has two down arrows, telling you you’re dropping fast

Double Rainbow Day
Means a line on the continuous glucose monitor that is inexplicably good and deserves ecstatic celebration.  See also:  What does it MEAN?

DSMA
aka #dsma aka Diabetes Social Media Advocacy.  Refers to a Twitter chat that takes place every Wednesday night at 9 pm ET, where members of the diabetes online community talk about diabetes lifestyle issues

E.T.
When your pump is still lit up inside your shirt

Exercise
Any form of physical activity, which most often effects blood sugar levels directly.  Such activities that may affect blood sugars include running, tennis, shopping, sexy moments, parking your car, lifting a pencil, and sometimes just the mere thought of exercise.

Flatlining
When your blood sugar is holding steady as seen on a continuous glucose monitor graph (see also: no-hitter)

Frankenbutt
When an old pump site is on the left side of your backside and you place the new one on the right, leaving the bum looking like Frankenstein’s neck with the bolts sticking out

Free Shower Day
Taking a shower on the day that your infusion set and/or CGM sensor are being swapped out, leaving your skin site-free

Glucocoaster
A crazy CGM graph.  Antonym:  no-hitter

Glucover
Diabetic version of a hangover. Is the after-affect of a bad late night low. Most often includes headaches and a bad taste of old orange juice and decaying glucose in your mouth. Cracker and candy wrappers and empty containers of food are often found lying around the person who is having the glucover. Most remedies include: brushing of the teeth, heavy applications of makeup to remove bags under eyes, Tylenol, and healthy binge eating.

Hard Low
There is a low and then there is a HARD LOW.  Most often coupled with standing with the refrigerator door open, eating the majority of a pound cake, and washing it down with half a bottle of grape juice.  Often followed by a Chaser

Hooked
When going about normal, everyday life and an inanimate object jumps out and grabs at an infusion set tubing, resulting in pain and/or cursing and/or the pulling out of said infusion set

H.A.B.
Huge Ass Bolus, usually taken in conjunction with huge ass meal

Insulin-Mama
The name my family calls me since my daughter regularly follows me through the house carrying crackers in her hand, saying "Insulin, Mama!"

Juicer
Another term for "insulin pump"

Lazy River Ride
An in-target CGM graph.  See also: flat-liner and no-hitter

Leaning
The act of standing quietly while low trying to hide a low blood sugar "lean" and someone notices you slightly tipping over

Liver Dump
When your blood glucose rebounds after a hard low (usually one in the 40s or below)
ex. "Hey, Mr. Liver ... thanks for the help, but it is a little too much and a little too late."

Make a Ladybug
To form that giant drop of blood that the old glucose meters used to require

Morning Boost
Refers to drinking coffee and the subsequent blood glucose spike the caffeine offers up

Mother-Birding
When a D'Rent feeds their young child glucose tabs or a sugar source

No-Hitter
A time period in which a diabetic does not hit their high or low threshold on their CGM. For a Dexcom user, they must be without any alarms during the entire day, and the day must be at least 24 hours. A diabetic who prevents their blood sugars from reaching a threshold is said to have "bolused a no-hitter."

No-No Cupboard
Where you (or your mom) keeps all your diabetes snacks that are off limits to others

Number
The glucose reading on the meter.  "Number" no longer refers to a phone number, jersey number, or the number you’re holding in line at the deli counter

On the Rise
When you're blood sugar has been low for so long, and then FINALLY shows signs of coming back up ex. "72. Thank goodness! I'm on the rise!"

Poker
Lancing device, also known as a "pokey"

Pump Envy
The feeling of T2/1'ers who are taking insulin injections 4+ times per day but do not qualify to receive a pump due to insurance issues or having a MiniMed or Animas or whatever-brand but coveting another brand or newer model

Pump-It-Up
What to do when you see a dessert that you just can’t resist (while simultaneously doing the raise-the-roof gesture)

SDD
aka "Shitty Diabetes Day."  May include any of and more than the following: feeling terrible due to blood sugar fluctuations, running out of low blood sugar treatment methods, needing to skip exercise due to blood sugar issues, and any and al instances that lend towards a "Diabetes: 1; Me: 0" day.

Sleep Treating
The act of bolusing, changing basal rates, or silencing ones CGM in the middle of the night without actually waking up to do so…(makes for interesting mornings…)

Stick
When ‘blood sugar test’ gets to be a mouthful

Sugar Baby
A name to call someone with diabetes, such as your daughter

Sugar Bloods
A more fun way to say blood sugar (especially with a southern accent)

Sugar Buddies
When you and another both have diabetes.  See also:  Diabuddies

Sugar Hang
The horrible headache that comes after a bad low or high

Sugar-Soil
When you get sugar on your fingers after treating a low which results in a falsely high re-check

Tsunami
A result of over treating a serious low blood sugar
ex. "Blood sugar at 38 mg/dl, can't hardly walk, grab the quart of OJ, not following the 15 rule. Result: two hours later a Tsunami blood sugar of 300 mg/dl.

Venom
What spews from our mouth when our blood sugar is off the charts high and we are less than sweet

"What’s off Limits?"
How to intimately ask where your partner’s pump site/continuous glucose monitor are located on the body
 
Winter Muted
When a pump or continuous glucose monitor is concealed under so many layers of clothes, its beeps are inaudible

Woodchuck
Safe word for “check your sugar” if you’re acting bitchy during a low blood sugar moment
(Editor's note:  Sounds like it could be "Wood-ya-chuck your blood sugar?"  PUNS!)

*   *   *

The first edition of dTOEs can be found on the old SUM blog, and the second edition can be found here. A compilation eBook will be available soon, with all three editions (and some bonus new terms) included!  Should be up in a few days.  Thanks to everyone for their input, and for Abby's help in compiling this edition.  :)

Posted by Kerri Sparling at 10:09 AM | Permalink | Comments (23)

A few weeks ago, Chris and BSparl and I went out to dinner.  Dining out with our little bird is a bit of a tangled experience, and we don't spend as much time people watching as we used to because we're very preoccupied with the baby wrangling. 

That night, though, we were sitting and settled and throwing gluten-free puffs (yes, all of us) around the dinner table like confetti when I saw this woman walk in with her family.  She settled her family in at the table, and then reached to remove her coat, revealing a beeper clipped to her pocket.

Only it was one of them fancypants beepers with the tubes and the buttons and the accompanying not-making-insulin pancreas.  Reckon it was an insulin pump.

Immediately, I wanted to swing mine over my head like a lasso and say "OMG lady, me too!!!"  I've had this feeling before, of wanting to sidle up next to someone and say, "I like your pump; want to see my pump?" but to me that sounds more like an awkward attempt to flirt instead of a moment of diabetes bonding.  Living in a very comfortable bubble of diabetes advocacy makes me think that everyone who has a visible "symptom" of diabetes wants to talk about it.  I have to remind myself that some people just plain don't want to talk about it.

But since I still wanted to say something, I targeted Chris instead.  

"Dude, 12 o'clock.  Actually, my 12 o'clock, your six o'clock.  Minimed pump on that lady."  I said to Chris without moving my lips, as if a pump sighting was a covert Navy Seals operation.

"Six o'clock?  Okay, do you guys know one another?  And why are you whispering?" he whispered back.

(I love that because she and I both wear pumps, we must know one another.  I've brought him right into this bubble with me.)

"No, I don't know her.  I have no idea who she is.  But I just saw her pump."  I paused, still whispering.  "And I was like a toddler, wanting to wave my arms around and say 'Pump! Pump!'"

He laughed.  The waitress came over to bring our food, and the two of us were immediately distracted by keeping BSparl's grabby little hands away from the hot plates. We had a nice dinner, and I sort of forgot about the fellow Navy Seal at the other table.

... Until we were leaving the restaurant, when I saw her glance at my hip (where my Animas Ping was tucked away), nudge her husband, and give a little nod. 

In my head, she whispered, "Dude, four o'clock.  Animas Ping.  Hooyah!"

Posted by Kerri Sparling at 09:51 AM | Permalink | Comments (53)

Oh rotting, feeble pancreas of mine,
Won't you be my Valentine?
Won't you wake from your long sleep
And make some insulin, you creep?

What makes you sit, all shaped like a wiener,
Lazy and dull, with a pompous demeanor?
What makes it okay, that for your enjoyment
You've spent twenty plus years filing unemployment?

We need to start over; we need to be friends.
We need this whole type 1 diabetes to end.
I'm tired of shots and I'm sick of the lows,
So I think we should talk about ending this row.
I could use a break, my corn-cob-shaped friend.
I'd love to have 'old age' listed as my end.
I think that your time off has drawn to a close.
I'd like working islets, and plenty of those.

How 'bout it, old pal?  Care to start working?
Care to start minding duties you've been shirking?
I promise to be an attentive best friend,
I'll thank you each morning and as the day ends.
I won't take for granted the hormone you make
And I'll forgive you for the last 24 years' mistake.

I've brought you some flowers and a Border's gift card,
In hopes that when I bring milkshakes to the yard
You'll be so inclined to jump start all those islets
Who've been holding their breath for so long that they're violet.

So what do you say, oh pancreas of mine?
Won't you be my Valentine?

Posted by Kerri Sparling at 08:27 AM | Permalink | Comments (38)

The first Diabetes Terms of Endearment post went up on my old Blogspot blog back in March 2006, and re-reading last night made me laugh all over again.  (Everything from SWAG bolusing to dotties was on that list!)  Then I found the dTOEs from April 2008, where we saw vampires cannulas and the acronym "YDMV" added to the pile. A community effort, with our whole community contributing.  (Only back in 2006, there weren't nearly as many of us online - power to the patient bloggers!)

But it's been a looooong time since the last dTOEs - like three years?! - and I know we have a bunch of words and phrases that only people with diabetes would really understand.  (Like no-hitter.  And #dsma.)  So I think it's time for a third edition. 

For the community-compiled third edition of dTOES, I'd love to hear from anyone who has a term that they use as part of their life that has become part of their vernacular.  The weirdo terms that you throw out at a dinner table with friends and they drop their forks to their plates, startled, while you're casually mentioning "shooting up." 

If you want to email your diabetes term of endearment (aka "sniglet" ... remember those?), please send them to Abby at abby (at) sixuntilme (dot) com with the subject line "dTOEs."  And if you want to leave them in the comments section of this post, go for it.  Third edition's the charm, right?  If you can send these/leave comments by Monday night, that would be awesome!!

Enjoy your weekend, and I'm looking forward to what our community comes up with this time!

Posted by Kerri Sparling at 09:20 AM | Permalink | Comments (64)

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

Posted by Abby (the Person) at 08:37 AM | Permalink | Comments (38)

When I look at the graph on my Dexcom, I like to see a nice, flat line.  You know, like a bread stick (that would be flat if I had rotated it a bit in Photoshop but I forgot and now it looks a little like it's a rising blood sugar holy run on sentence AGAIN #Bes).  Imagine it flat:

And there are some days when the stupid thing looks exactly like a giant letter M, having tea with a giant letter W:

I aim for no-hitters as often as I can, but it seems like tea parties are all the rage these days.  I need more breadsticks.  

(And now I'm seeing CGM graphs everywhere I look, and it's freaking me out.)

Posted by Kerri Sparling at 08:25 AM | Permalink | Comments (18)

I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting.  (Also, the photo permalink URL included "onbackdiabetestype1forever," so that was a bit of a hint.)  And I realized, thankfully, that I don't hold any secrets about diabetes, because I've had the good fortune of this community to help me feel supported and empowered enough to deal with all my diabetes demons openly and unabashedly. 

I've had a few ideas for a non-diabetes related PostSecret postcard in my head for a few years now, and I took these pink cookies as a sign that 2011 is as good a time as any to let some things go.  PostSecret is kind of like Pandora's box, only the secrets that are released come from inside of you.  Like blogging, it's a unique kind of free therapy, and who can't use that every now and again?

Thanks for the inspiration, diabetes postcard writer. 

What would be on your PostSecret submission?  Feeling brave?  Leave an anonymous comment here, if you want.  Or submit your own PostSecret to Frank (does he have a last name, or is he like Cher?). 

Posted by Kerri Sparling at 08:43 AM | Permalink | Comments (289)

Recently, I reconnected with a long-lost local PWD named Ryan.  Last time Ryan and I saw one another, we were talking about diabetes goal-setting and dealing with wicked bouts of burnout.  And this week I received an email from him with a freaking brilliant idea about how to stay motivated towards setting - and reaching -  diabetes-related goals.

"I've had this 'pyramid' for about three months now.  Just something that I keep near my desk to keep me focused on my diabetes.  After completion of the pyramid I have no clue what I will do but some kind of celebration will be in order," he wrote, and attached a slide to his image.  And when I opened it, I was like "whoa."

He had created a pyramid of his diabetes goals.  Tangible goals - real life goals - that are both achievable and ambitious, all at once.  I thought this was so clever because it is a constant but non-threatening reminder of what diabetes goals are most top-of-mind for him.  (Also, having a celebration at the end of that pyramid completion sounds like a quality idea.  Perhaps a Fudgy the Whale?)

I've been working towards gaining better control of my diabetes (and overall health) lately, and I love the idea of something I can print out, stick to my fridge, and remain inspired by.  I liked the idea of a pyramid, but I kept picturing a huge Bingo hall in my mind, with a whole bunch of PWDs sitting at the tables with glucose tabs and bingo markers at the ready.  But the trick wasn't getting four in a row - it was filing the whole card.

I thought about my own, personal goals and created this:

Posted by Kerri Sparling at 08:28 AM | Permalink | Comments (21)

A few weeks ago, the WEGO Health editorial team was hitting up the Twitterverse, asking people to finish the Tweet:  "My health in one word is _______."

My health, in one word, is VARIABLE.  As are my emotions related to it. 

Since that question was asked on a day when I was watching giant Ms and Ws dance on my Dexcom graph, I wasn't feeling empowered or particularly rah rah.  I was pissed, because despite the fact that I had woken up at the exact same time and had eaten the exact same breakfast and taken the exact same insulin dose as the day before, the results were completely different.  (One post-prandial was 146 mg/dl and the other was 288 mg/dl.  What the fern?)  So "variable" was a tamer way of expressing other "one words" I could have used, like "frustrating," "infuriating," "stressful," and "bogus." 

However, if you asked me to finish that Tweet on Monday, when I felt like I had things figured out, I would have said, "My health, in one word, is achievable."  Or "resilient." "Unflappable." "Strong."  And it makes me wonder - are these positive words I'm using to describe my health, or myself?  The negative words seem to point their wordy little fingers right at diabetes itself, but the positive ones seem to give the PWD a pat on the back.  (And rightfully so, because a day of in-range blood sugars isn't because of diabetes; it's the result of the hard work of the person with it.)

Which is why "variable" seems to be the best word to describe my health, and my life, with diabetes.  Every day includes diabetes, but not every day plays out the same way.  Some mornings, I wake up to a flatlined Dexcom and a meter reading that would make my endocrinologist dole out a shiny gold star.  But other mornings, the Dexcom is hollering at me and my endo would probably poke me with a stick and tell me to stop sleeping through high alarms.   (She's very nice, and I don't think she'd actually poke me with a stick.  Maybe she'd stick marshmallows on the end of a stick and poke me with that, which is what Chris and I have threatened to do to the cats in efforts to gently punish them.  Marshmallow punches.  Holy digression there.)

Diabetes is unpredictable.  Hard to tame.  Karen called it "complicated." Cherise called it "wacko."  It's demanding and pushy and relentless and difficult.  It's a child throwing a tantrum.  It's a lion with an attitude problem. It's ever-changing.  It's variable.  

How would you describe your health, in one word?

Posted by Kerri Sparling at 10:28 AM | Permalink | Comments (30)

Back in 2009, when I attended the Children With Diabetes "Friends for Life" conference for the first time, I had the opportunity to check out the "It's Not Just a Numbers Game" session with Joe Solowiejczyk.  It was awesome!

From that entry: 

"I schedule my diabetes depression days," he said.  "I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am."  He laughed.  "After about an hour, I'm sick of it and I just want to move on with my day."

I like Joe.  I like listening to him talk and I respect him for managing diabetes for over 47 years.  I respect him for saying, "It took years for me to be able to say, 'I'm having a hard time with diabetes,' without it being a chip on my integrity."  This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness.  But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.

"You can not like it and still do it.  Hating it [diabetes] and doing it are not mutually exclusive states." 

He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way.  The possibility of a cure was mentioned.  And while many diabetics say "I'll eat the contents of an entire Crumb's Bakery," or "I'll drink orange juice FOR FUN," Joe smiled gently.   

"If there's a cure?  What will I do?  I'll sit on a park bench for three weeks and stare at the sky and do nothing."  

Joe has a video that's up on the ChildrenWithDiabetes site, and it's from that same 2009 Friends for Life session.  If you haven't had a chance to see him talk live, you can catch some of his personality and inspirational words in this video. 

Just watching this video again today has made me smile, and made me less frustrated with the 221 mg/dl I woke up with this morning.  Thank you again, Joe.

Posted by Kerri Sparling at 08:45 AM | Permalink | Comments (15)

I love my insulin pump (well, as much as you can enjoy anything that's used to manage a chronic disease), and it's a constant part of my daily routine.  It goes with me EVERYWHERE, from the car to the supermarket to the bathroom and to bed at night.  This pump is never more than a few feet away from me, and I keep close tabs on it.

And sometimes it keeps wicked close tabs on me.  See also:  tangled.

Have you ever found yourself wrapped up in a pump tubing hug?

Posted by Kerri Sparling at 09:02 AM | Permalink | Comments (32)

I didn't make this video, but the fact that it quotes questions I've heard people ask the parents of children with diabetes time and time again makes me smirk.  This video is anonymous - I don't have a clue as to who crafted it up.  It's a little bit sassy.  And my goodness did I laugh when I first watched it.  The second time I watched it, I paused it to write down my favorite line.

"There are only two things my daughter cannot eat:  poison, and cookies ... made with poison."

(Note:  If someone can hook me up with this moss that supposedly cures all things that ail ya, let me know.  I'd love some in time for the holidays.)

Found out where this video was born - on Joanne's Death of a Pancreas site. Thanks for the laughs, Joanne!

Posted by Kerri Sparling at 08:05 AM | Permalink | Comments (24)

Last week, I was at an event at Novo Nordisk in New Jersey, attending an event (more on that later) and participating in a discussion about what it's like to grow up with diabetes, and more specifically, what our actual diagnosis moments were like.

I had a chance to talk with a few kids with diabetes (much younger than me - we're talking like the 5 - 10 year old range) and their parents, separately, and what amazes me is how much information is available to the newly diagnosed these days. 

When I was diagnosed (cue stories about walking uphill both ways to get to the endo's office), there weren't any websites dedicated to the parents of children with diabetes.  There weren't blogs about all kinds of different grown ups who were living with diabetes, offering my parents a glimpse into a life after diagnosis.  The books about diabetes were limited to those of the cooking variety, and mostly dealing with diabetes that was controlled by diet and exercise.  Google wasn't an information option, and the only resources we had were people who had older aunts and uncles who had "a touch of the sugar." 

When the diagnosis call came in for my parents, we barely knew what diabetes was, never mind how to live with it.

I listened as the kids in this session talked about what kind of information their doctors gave them upon diagnosis.  "We got a book?  And we went home with needles but then I got my pump so we don't use the needles anymore."

These kids had a very different diagnosis experience than I did.  Most were on pumps within a year of their diagnosis, and web resources kept their parents tuned in to the latest diabetes developments and research.   They were in and out of the hospital within two or three days time, compared to my two 12-day hospital stays back in 1986.

For some of you guys who are reading this, you may have been diagnosed a while ago, like me.  Or you might be newer to the diabetes experience, or handing this disease on behalf of a loved one.  What information would you have wanted upon diagnosis?  How has the diabetes blogosphere changed the way we all feel about our diabetes?   I thought about the resources available to my mom and dad.  Like that bright red book we received from Joslin that had all the meal management tools available in the mid-80's, and that chapter in the back about complications and blood sugar goals.  I wonder how different my care would have been, and my life as a result, if I had received more information about connecting with other diabetics, and forming a community of emotional support for myself. 

So much has changed since I sat in the endocrinologist's office at Joslin back in the day.  

"How many of you guys had to practice injections on an orange before you tried the needle on yourself?" I asked the room of kids, and they looked at me blankly. 

"An orange?"  a sweet little five year old girl asked.  "Nah, we used fake skin."

Fake skin.  Well I'll be.

Posted by Kerri Sparling at 11:44 AM | Permalink | Comments (47)

(Note:  This post contains spoilers.  If you are like my girl Brittany and you believe happily in the story of Santa, skip down to where it says "Diabetes is like Santa Claus.")

My husband and I share a philosophy on Santa Claus.  

Santa gets too much credit.  Why should Santa get all the glory for the gifts that show up underneath the Christmas tree on Christmas morning?  Mom and Dad work their tails off to provide a fun and comfortable life for our child, and to have the fun thunder (funder?) stolen by Santa Claus is unfair.  "Thank you, Santa, for the Barbie and the Rockers van!"  I shouted as a kid, not realizing that Mom and Dad put in some extra hours (and spent half the night assembling the stupid thing) to get that Rocker Van under our Christmas tree. 

So BSparl will be fed the Santa story, but she'll also understand that her Christmas gifts come mostly from her parents, and not from a fictional cookie thief who shimmies down the chimney.  Santa doesn't work as hard as we do, so he shouldn't get all the credit.

Diabetes is like Santa Claus.  (Welcome back, Brittany!)  Only in this case, it SHOULD be the one given most of the credit for certain things.  And I shouldn't give myself so much of the blame and guilt.  I have a tendency to look at a blood sugar reading and instantly blame myself for it. 

"Oh, 236 mg/dl.  Great.  What did I do?"  And then I start musing about what I may have eaten or if I under-bolused.  Same guilt for a low.  Same reaction for any number that may be deemed "bad."

Only it's not my fault.  Even if I did overeat or over-bolus.  It's the fault of diabetes.  I can't assume all the blame for the effects of this disease because there is plenty that is out of my control.  I can count carbs and test often and make use of all the technology and medical advancements available to me, but when things go awry, I can't sit around and blame myself.

Last week, I was talking to some parents about "good" and "bad" diabetes numbers.  And I hate nothing more than assigning such adjectives to a moving target like a blood sugar number.  236 mg/dl isn't "bad."  It's out of range.  100 mg/dl isn't "good," but just in range. 

And, like Santa Claus, diabetes isn't going to get all the credit for the good stuff, too.  When my A1C was at the Nice Healthy Baby Range, I didn't give the nod to diabetes for being easy on me.  It was the result of my hard work against a pain in the ass disease.  Go ahead and take all the credit for the tough stuff, Diabetes.  I'm not owning that part of it.  I'm just going to keep looking ahead and taking one day of diabetes at a time.

... and mentally prepare myself for the Christmases to come, when I'll be up all night assembling whatever goofy gift is on my daughter's list.  ;) 

Posted by Kerri Sparling at 11:11 AM | Permalink | Comments (28)

Posted by Kerri Sparling at 10:27 PM | Permalink | Comments (2)

I spent some time with some parents of kids with diabetes this week (more on that in short bit), but part of what we talked about was that transition between being a "child with diabetes" to an "adult with diabetes."  

One of the biggest milestones for me as a transitioning child was earning my driver's license.  I wanted to drive more than anything else.  I wanted that freedom and that ability to go where I wanted and when I wanted, without that awkward "waiting for mom to pick me up" moment.  But my parents and I talked about how driving with diabetes was a huge responsibility, and it was completely understood that if I screwed with my diabetes management intentionally, the car keys wouldn't be resting in my hot little hand.  As I matured and got adjusted to the constantly shifting levels of responsibility that were required of me, the torch of diabetes responsibility started becoming more and more predominantly MINE.  

Abby talked with a few people with diabetes in her community about making that jump from "under parents' care exclusively" to taking ownership.  The responses were varied, which made me wonder how different this transition is, family-to-family:

Ashley Napear  (22 years old, 18 years with diabetes)
I know for me growing up, my doctor told me that I was not allowed to have an insulin pump until I could take care of my diabetes which meant me doing everything. I know this is different now because pumps are being given to kids at younger ages, but this is how it happened for me

Dylan Hoots (18 years old, 8 years with diabetes)
I know that when I reached a certain age ... even as young as fourteen, I unintentionally may have pushed my parents away from taking care of me because in the back of my mind I wanted to be self reliant and be able to take care of the disease on my own, however, through that they eventually never asked me about it and it led to a lot of burnout. But I think every kid wants to be independent; it's especially different for children with diabetes because it can be such a dangerous disease.

Amanda Devens (20 years old, 14 years with diabetes)
It was a sort of process, slowly I started to realize that I needed to do it on my own, pricking my finger, then taking shots, and then pump sites. Because well there was one day when I was at school - my mother used to show up and prick my finger because I was too scared to - but this day she didn't show up, and I knew it had to be done, and so I did it. And realized that it wasn't really THAT bad! :)

Alissa Carberry (20 years old, 11 years with diabetes)
It was definitely a process- started slowly and it picked up. I was diagnosed when I was 9 and initially let my parents do EVERYTHING- but within a few years I realized I couldn't hang out with my friends or do any "normal things" that an eleven or twelve year old girl wanted to do because of the struggles of giving injections and carb-counting. My parents and I would work out ways to ease out of my dependency, such as me checking my sugars and carb counting on my own, but I had to tell them so that they could log it. Eventually I started doing everything and loved the independence that went with it, only when I went through burnout periods did they help or when I was ketonic (essentially when I hit a roadblock or diafails occurred) Once I went on the pump I was self sufficient … my dad still tells me that he has NO idea how to work my pump!

Melissa Moulton (20 years old, 10 years with diabetes)
For me it was a slow, gradual transition process. I went from my parents sending me on my way with pre-filled NPH/Regualar syringes, to leaving a filled Minimed 508 reservoir on the counter for me, to my mom occasionally scrolling though the numbers on my meter, to complete independence. It was definitely a give and take process, with me taking on more than I should have at times, and trying to push my parents away and them trying to take my diabetes back into their control. But hey, ten years later I'm doing just fine, so I think something in there went right :)

Alicia Miller (20 years old, 8 years with diabetes)
Diabetes was a bit of a shock to my growing up. I wasn't diagnosed until I was 12, so I wasn't really able to progress into my teen years and puberty until I had gained back the weight that DKA had taken from me. It was rather quick for me, I was giving myself shots within two months of my diagnosis (I had wanted to go to a sleepover and wouldn't be allowed if I wasn't doing them myself) and was on a pump within two years. I'm still adjusting to having diabetes in my life. I have gone from middle school, to high school, and now to college and traveling with it. I am still questioned with what I am doing when it comes to checking my blood sugars, pumping and using my sensor. My parents have always helped as much as I allowed them to, which wasn't much since I have been incredibly independent when it comes to my diabetes. I went to school, stayed after and hung out with friends, clubs etc. like everyone else because my parents trusted me, and my control and dedication to controlling my disease. I may not always have "perfect" blood sugars but I have managed to lower my AIC, keep my eyes in good shape and travel abroad without major issues with my diabetes.

Bethany Kinsey (23 years old, 18 years with diabetes)
For me it was more a psychological struggle of wills. Having had diabetes since the age of 5, things typically go one of two ways: either you don't learn to make the disease your own until college or some other cataclysmic event in life or you want full control by age 12. I preferred the latter of the two. I am generally a very independent person with everything I take on, so why not diabetes as well? However, my mom and I fought for years about my control-sadly, she and I handle stress and arguments very differently, so neither one of us were able to realize what the other person was going through until retrospect allowed us to see 20/20. I recommend taking baby steps instead of diving head first into the deep end as a pre teen/early teen. Diabetes is a BIG deal. Take all of the help you can get - just don't let that help smother you.

Abby Bayer (22 years old, 12 years with diabetes)
My mom never had much to do with the actually diabetes part, about 3 days after I got home from the hospital I was doing my own injections, carb counting, etc.  I was almost 11 years old and was not about to have my mother running my life (and she wouldn't let me sleep at friends houses until I proved myself).  The biggest transition that I'm still struggling with is the paperwork side.  Insurance companies hate me, and aren't shy about telling me so. Sometimes I'll get 2 shipments of insulin when I only wanted one, and then they won't send me more when I ask for it. I have about 5 boxes the size of a small house in my basement filled with expired strips and lancets because the company was sending me far too many without me asking. It's a hassle, and until I get my own insurance and have the whole situation under control, I'm going to rely on my mother to fight with those people in who-knows-where about what they think I really need.

When did you start taking control of your own diabetes?  And this question isn't just about children becoming adults.  This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit.  Taking ownership of diabetes isn't limited to kids who are growing up. 

When did you start to gain your diabetes independence?

Posted by Kerri Sparling at 08:31 AM | Permalink | Comments (32)

On Facebook, You Can Also Play to Manage Your Diabetes!

Posted by Kerri Sparling at 08:10 AM | Permalink | Comments (2)

I'm late to the party on this one, but I thought this was a great awareness initiative taking place across the diabetes blogoshere (and starting on Alexis' and Sherry's blogs:):  Special Sib of a D-Kid Day.

I realize I am no longer a diabetes kid, but I used to be one.  And my siblings are still my siblings, no matter how old I get. 

I don't have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households.  Once the vials of insulin moved into our refrigerator's butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of 1/2 a gram of actual nutrient and then a whole pile of crap).  Our eating patterns changed as a family, and Diet Pepsi and food scales replaced the snack cupboard of days gone by.  My mother hid the ice cream sandwiches in the hollowed out box of broccoli in the freezer.  She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet.  She was a food-hoarding squirrel, with delicious treats in every obscure corner.

For me, this was a smart approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy.  But for my brother and sister, both with perfectly capable pancreases (pancrei?), the lifestyle change wasn't necessary.  Didn't they get to have snacks, still? 

What I failed to realize is that my diabetes didn't have to be my brother and sister's diabetes.  There was so much about their lives as the siblings of a child with diabetes that I couldn't even wrap my head around.  I didn't know what it was like to have your sister come home and play host to something no one could see, yet gained so much attention (for better or for worse).  I've talked to some siblings of kids with diabetes and heard about the guilt.  "I felt bad for wishing I was sick, too, because I was jealous of the attention."  Or the worry.  "Was I going to get diabetes, too?"  Or the anger.  "I am sick of her diabetes being the sole focus of our family."  Or just plain fear.  "Will diabetes hurt my sibling?"

Diabetes is a disease that affects the whole family.  It's not just the person who is receiving the injections or pump infusion sets or finger pricks that's carrying the full weight of diabetes.  I don't know if my brother and sister understood what "diabetes" meant when I was first diagnosed, and if any of us understood just how big the words "without a cure" really felt.   But I know that we learned about diabetes as a family, and dealt with it the same way. 

In honor of Special Sibs of D-Kids, I raise a contraband Ring Ding to you in solidarity.  You guys are a very compassionate, understanding, and patient group, and we, as your diabetic brothers and sisters, are very grateful to have you in our lives.

Posted by Kerri Sparling at 08:25 AM | Permalink | Comments (11)

"Social media in the diabetes sphere is exploding, and patients are actually using online venues as one of their first lines of defense after diagnosis - and even years after their initial diagnosis. Logging online hours is becoming as important as getting in to see your endocrinologist these days."

- The Social Method for Diabetes Care

As a community of people with diabetes, we definitely know that diabetes is more than checking in with our doctor for seven minutes every few months.  But we want the general population to know that diabetes isn't an easy-peasy fun diseasey (sorry - that was horrendous, but if it rhymes, I'm easily suckered in), and that we still very much deserve research and advancements in disease management.  I'm happy to be hopefully helping to burst the diabetes bubble at least a little bit this morning by guest posting on the widely-read technology blog ReadWriteWeb, with shout-outs to Karen, Scott, George, Diabetes Daily, and TuDiabetes. 

If you have a chance to check out The Social Method for Diabetes Care, I'd really appreciate it!  It's still Diabetes Month, and we're still doing our best to educate the public about diabetes, one click at a time.

Posted by Kerri Sparling at 08:10 AM | Permalink | Comments (6)

When I arrived at the JDRF Type 1 Talk event in NYC, joining Aaron Kowalski (JDRF's Assistant VP for Treatment Therapies), Lorraine Stiehl (JDRF's National Chair of Grassroots Advocacy), Dick Insel (JDRF's Chief Scientific Officer), and Rachel Steinhardt (JDRF's National Director of Marketing and Communications) on the panel, I realized that I was the only person who wasn't directly tied to the JDRF organization.  Honestly, I felt a little like the wild card.  

So why was I there?  In short:  to represent our community as best I could.   

We had Rachel from the JDRF marketing side, Dick and Aaron from the research side, Lorraine from the advocacy Side, and then me, representing … well, the "plain ol' people with diabetes" side.  I wasn't there for the JDRF.  They were my gracious hosts, and I'm thankful that they thought of my voice (and my incessant cough) for this event, but I'm not their mouthpiece.  For me, our diabetes community comes first, and all organizations come second.  

Many of the questions were aimed at research efforts, including cure efforts and the Artificial Pancreas Project, and Rachel shared many of the resources that the JDRF has available to the community.  And I listened attentively to their answers, and contributed as I saw fit - you can watch the video for the nitty gritty details. But I can't claim to know all the nuances of what they were talking about.  There were a lot of moments of silence from me because I didn't have much to say in terms of research and government advocacy.  But I still said my piece, and wanted to bring the discussion back to helping the community as much as possible.  And I felt like I was listened to, and actually HEARD.  Big organizations care what we, as a community, have to say, and just the thought of that respect makes me so proud of what we've created. 

• Sure, we wore blue and tested in tandem on Sunday, but we can't help but be aware of diabetes.  We live with it every day.  What about the people who aren't in the diabetes community?  I want to find ways to burst the diabetes bubble.  I know we're all blogging and listening to one another, but how are we stepping outside of the D-OC comfort zone and educating the people who truly don't have a clue?  How do we make diabetes less of an invisible disease and more part of the information mainstream?
  
  
• Also, I know that there is a lot of focus on children with type 1 diabetes, but thankfully many children with type 1 diabetes grow up.  And we become adults with type 1 diabetes.  The adults with type 1 community is getting a bigger piece of the representation pie - like the adults with diabetes sessions that are being added to Friends for Life, and the adults with type 1 toolkit on the JDRF site - and this progress is thanks, in large part, to our passionate diabetes blogging community.  Adults with type 1 deserve, and are now beginning to have, a real voice in these organizations. 
  
  
• And thirdly, I feel that there needs to be more support for the extended diabetes community, namely the caregivers of people with diabetes.  Whether you're the spouse of a diabetic (love you, Chris), or the parent of one, or the best friend of one, you ARE part of this community and you need support as well.  Someone quotes a statistic that there are almost three million people living with type 1 diabetes in the United States.  To me, that number of people in our community swells exponentially when I think about everyone who loves that one person with diabetes.  Our community is bigger than we realize, and for those living closely with diabetics, they deserve some resources of their own to lean on.

"Just because we make diabetes look easy, it's not.  And just because we make it seem like it's something we can live with and we can have this big, full life - which we can, but at the same time, it can be very challenging.  I think the one thing that I want to leave us with is that just because we don't look sick, doesn't mean we don't still deserve a cure."

I think this event was a great way to get some discussions going, not only within organizations themselves, but with the diabetes community as a whole. Thanks to everyone who took the time to tune in, and thanks to the JDRF for hosting this event!

Full disclosure: The JDRF paid my travel and lodging, but did not compensate me for speaking. My opinions weren't paid for, per usual. :)

Posted by Kerri Sparling at 09:39 AM | Permalink | Comments (19)

"Brrrrr ... it's a little chilly outside today," I said to BSparl as I tucked her blanket snug around her wiggly little self in the car seat. She waved at me and showed me her sock.

"Yes, that's a nice sock, birdy.  Okay, let's get out of here and get you into the car so we can go home!"

The automatic doors parted and a brisk gust of wind came and skipped down my collar.  With the baby's car seat safely tucked into the belly of the carriage, I ventured out to find my car in the massive parking lot. 

"Ha ha, where did Mommy leave the car?"  I said out loud, walking up and down the parking lot aisles and pressing the alarm on my keys.  Nothing.  No flashing lights, no subtle little "beep" noise from my Honda.  Nothing but a sea of cars and I had no idea which one was mine.

"Am I getting old?"  I asked BSparl.

"Mmmmmm!"  she proclaimed, raising her teething toy into the air.

I walked for several minutes, combing the lot for my car.  And the wind kept whipping, only this time it felt good because it kept whisking the sweat off the nape of my neck.  I felt dizzy.  

"This car has to be here somewhere ..." I passed the the same minivan I had just seen moments ago, the one with the stickers on the back advertising the happy family that held the title.  "I just can't find it.  I can't find anything, baby.  I have no idea where this car is."

BSparl was starting to fall asleep, tucked happily into the blankets in her car seat.  And I could not find the car.  The parking lot was this sea of blue and black and red cars, none of which were mine.  My vision began to sharpen on the peripheral, leaving my main point of focus a little blurrier than usual.  The sounds of the parking lot were magnified in my head, leaving me confused and lost in my mental cotton ball.

I felt the buzzing from my purse, and then heard the unmistakable BEEEEEEEP! of the Dexcom.  Without checking to see what my blood sugar was, I reached into my purse while pushing the carriage and retrieved a jar of glucose tabs.  I chomped down on four of them at a time, the glucose dust taking off into the air.

The ground was starting to shift, like a blurry and constant tremor that only I felt.  I knew this low wasn't good - I needed to find my car and sit in a hurry.  But I had the baby with me.  So I had to make sure she was safe, too.

I saw a young kid who was corralling the shopping carts.  I motioned for him to come over, and he trotted over with a half smile.

"You okay?"  he asked.

"Not really.  I'm having a low blood sugar reaction and I cannot find my car.  I need to get my baby into the car and out of the cold, but I can't find my car.  It's not here.  I can't find it."  I hate when crying is the prominent symptom of a low.  I felt the tears coming.  And then I started to laugh, because I was picturing myself, shopping cart crammed with baby and bags, my coat sleeves covered in glucose dust, crying and roaming aimlessly around the parking lot in search of one little car.  

This poor kid must have thought I was on drugs.

Everything happened in fast forward.  This kid told me to stay where I was and he would find my car.  He took my keys and returned quickly, telling me I was just a few aisles over.  He put the baby's car seat in her car, loaded my bags into my trunk, and asked me if I was okay.  I housed a few more glucose tabs in the meantime.

"Do you need me to call someone for you?"  

"No, I'll be fine in just a few minutes.  I just couldn't find the stupid car and my blood sugar wasn't helping.  I'm so sorry.  Thank you so much for your help."

"Okay.  No problem.  If you need anything, I'll be rounding up carts.  I will be watching you, okay?"  He paused for a second, and then rubbed his hands over his attempt at a beard.  "Not like 'watching you' in a creepy way.  Just like making sure you two are okay."  

I sat in the car and waited for my blood sugar to come up while BSparl napped in the back seat.  After a few minutes, I checked to see 82 mg/dl flashing up from my meter.

"Holy biplane-building cats, Batman," I mumbled to myself.  "I must have been crazy low."

Safe in my car with my baby buckled in, I waited in the parking lot for my blood sugar to continue to rise, thankful for the kindness of strangers.

Posted by Kerri Sparling at 10:16 AM | Permalink | Comments (54)

This year, on World Diabetes Day, I will be participating in the JDRF's Type 1 Talk event in NYC.  And by "participating," I mean I'll be part of the broadcast with Dr. Aaron Kowalski (JDRF Assistant Vice President for Treatment Therapies),  Rachel Steinhardt (JDRF National Director, Marketing & Communications), Dr. Richard Insel (JDRF Chief Scientific Officer), Lorraine Stiehl (JDRF Volunteer of the Year & National Chair of Grassroots Advocacy), and Rik Kirkland (JDRF International Board Member).

So them.  And me.  Needless to say, I'm very honored and entirely out of my league.  And hoping to properly represent the diabetes online community for the afternoon.

This event will broadcast live, using the Type 1 Talk application on Facebook (click here for that), and people can tune in on World Diabetes Day to catch the broadcast and submit questions for the panel.  (Note:  Ask easy ones.  Like "What's your favorite color?" and "How many fingers am I holding up?")  The JDRF is also hoping for other Type 1 Talk events to take place across the country - right now there are 66 events set up.  (Including Lee Ann Thill's Art & Diabetes Event taking place in New Jersey!) 

The JDRF is hoping for 100 events across the country, and so far there are only 66 officially set up.  If you're interesting in setting up your own Type 1 Talk event, I've got some information that might answer some questions for you.  Here's a PDF that talks about planning a Type 1 Talk event, and here's one about what to do during the actual event. 

Are you looking for something to do this weekend?  Think about hosting a Type 1 Talk event and help raise awareness about type 1 diabetes.  And please, if you can, tune in to the live broadcast from NYC at 3 pm EST!

Oh, and one more thing:  Have you seen this video?  The one that helps kids get the insulin they need, just by you watching the video?  We're up to 73k views as of this morning, and I KNOW we can get to 100K well before World Diabetes Day this Sunday.  Please, watch the video - even if you have already - and pass it on to your friends!

(Big disclosure:  No one at the JDRF asked me to talk about this.  Or to blog about this.  But if they had, I would.  Works out conveniently.)

Posted by Kerri Sparling at 09:01 AM | Permalink | Comments (4)

It's Diabetes Month.  And it's D-Blog Day (thanks, Gina!).  This year, the online collective is talking about the six things they wish people knew about diabetes.  I know we, as part of this community, know an awful lot, but I wanted to write this for the people who might just stumble onto this post arbitrarily.  Because we talk a lot to one another within our community, but we need to bring awareness outside of this bubble. 

Here are my six things that I wish society knew about diabetes:

There is more than one kind of diabetes.  This isn't a knock on my type 2 and gestational diabetes friends, but definitely a knock on society's perceptions at large.  People have one musty, old perception of what diabetes looks like, and it's always someone older, heavier, and lazy.  Wouldn't they be surprised to meet our fit type 2 friends, or the 20 year old gestational diabetic?  Or a "juvenile diabetic" who isn't eight years old?  Diabetes doesn't have "a look."  This disease does not discriminate.

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I'm not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we're hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don't feel alone.  Diabetes isn't just mine.  It belongs to everyone who cares about me.

Diabetes isn't just a physiological disease.  It's an emotional one, too. It's not just a question of blood sugar levels and insulin supplementation.  It's about managing the emotions that come as part of life with a chronic illness.  It's about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident.  I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it's a short life or a very long one.

Diabetes isn't easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  "You just wear the pump, test your blood sugar, and watch your diet and you'll be fine, right?"  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes.  It's never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn't.   

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There's no winning combination and no "right" way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin - this doesn't necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn't work for everyone, and neither do certain medications.  Your diabetes may vary (thanks, Bennet), and what works for you may not work for everyone.   It's important to remember that this disease doesn't have a predictable path, so there are plenty of "right' ways to handle it.

Just because we don't look sick doesn't mean we don't deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn't.  There's no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn't worth their attention.  We deserve a cure.

Happy D-Blog Day to my fellow PWDs and caregivers.  You guys make this whole mess so much easier to deal with.  Thanks for being there!

Posted by Kerri Sparling at 09:17 AM | Permalink | Comments (34)

(And no, this doesn't mean you have to become Robert Smith.)

With more than two decades of diabetes clocked in, my faith in a cure has been shaken with every diabetes anniversary.  Each September, I realize that more has been done to improve the quality of life for people with diabetes, but little has been done in giving us the hope that a cure - a real cure - is possible in our lifetime.

Except last year, when I made a trip to Florida to visit the Diabetes Research Institute, my hope was reignited.  The Diabetes Research Institute is functioning solely to provide research for a cure for diabetes.  And I have cautious hope that they will be the ones to make great strides in curing type 1 diabetes.  If not for me, then for the generation after me.

Which is why I am part of The Cure this month for Diabetes Month.  I made a small donation to the DRI and uploaded my photo to the Cure collage.  (You can find me in the bottom left hand corner of that sassy little E there.) 

Camillo Ricordi, Scientific Director and Chief Academic Officer of the University of Miami Diabetes Research Institute, stated in a recent interview on the Huffington Post, "I started this work to cure diabetes. My goal has not changed. I will keep working until I get the job done."

I can get on board with that.  Be part of the Cure.

Posted by Kerri Sparling at 07:37 AM | Permalink | Comments (13)

It's Diabetes Month.  (You may have heard the rumors.)  And there are some fantastic awareness efforts taking place across the diabetes community, both online and off, during the next 30 days.

But there's one campaign that's not only raising awareness, but also helping to bring insulin to children in some of the world's poorest countries:  The Big Blue Test.  Here are some of the details, pulled from the press release -->

The Big Blue Test, an initiative started by the Diabetes Hands Foundation (DHF) in 2009, takes place every November 14 during World Diabetes Day. People with diabetes are invited to test their blood sugar, do 14 minutes of activity, test again and share the results. In 2009, more than 2,000 people took the Big Blue Test and saw the impact of exercise on their blood sugar.

For 2010, the Big Blue Test is even bigger! Together with Roche Diabetes Care, makers of ACCU-CHEK® diabetes products and services, DHF is aiming for a minimum of 100,000 views of its Big Blue Test promotional video. To help the foundation reach this goal, Roche has underwritten the production of the video and will make a donation for every view the video receives up to $75,000. DHF will use the donation to help Insulin For Life and the Life for a Child program, run by the International Diabetes Federation. These two global, humanitarian organizations provide diabetes medication and supplies to children in the world’s poorest countries.

And what do we need to do?  We only need to watch this video.  For every view, we make a difference.  You aren't being asked for your email address, or your personal information, and no one is selling you something.  This video is to help kids get the insulin they sorely need.  Insulin is not a cure, but it does save lives.  And we, as a community, can help make a big difference this month.

So please, watch the video.  And pass it on to your friends.  Ask them to pass it on to their friends.  Raise your voice for the Big Blue Test.

Posted by Kerri Sparling at 08:33 AM | Permalink | Comments (9)

We walk to show that we're in this together.  That we are an extended family of people with diabetes - young and old alike, all living as well as we can with this disease.   That we rally together and celebrate our lives, even when they're ornamented with insulin pumps and glucose meters.  We bring our moms and dads.  Our husbands and wives.  Our friends.  Our children.   It's an event crammed with people who love and who are loved, and we walk because we're part of this diabetes family.

Thank you so much to everyone who donated to this year's JDRF Walk to Cure Diabetes.  Your support means so much to me and my family!!

And the walk was a great way to kick off Diabetes Month, where (hopefully) the attention of the nation will be turned to diabetes in all its forms.  I know there are many projects and awareness initiatives taking place across the diabetes online community, and I'll do my best to help spread the word here.

In the meantime, BSparl enjoyed her first Halloween on the outside, and she charmed her mommy and her daddy by beaming out some smiles in her pink kitty costume:

I love being part of her life and seeing her smile every day.  I'm working hard to be around and bothering her for a long, long time.

... we walk because we want people to know there isn't a cure yet.  But there should be.

Posted by Kerri Sparling at 09:17 AM | Permalink | Comments (19)

Yesterday, I was up in Boston proper for a meeting of health activists from the WEGO Health community, brought together as part of a panel of patients who were willing to share their perspectives with Pharma.  My fellow panelists - Alicia Staley, Rosalind Jaffe, and the diabetes community's own Karen of Bitter-Sweet Diabetes - and I talked with a group of representatives from Pharma who had questions about getting involved in the social media space.  (Did you know Pharma wants "in" on the social media space?  Can you tell?)

The discussions were extensive, and we talked openly about what we, as patients, thought Pharma was doing "right" and then our opinions on what was missing from the social equation.  The WEGO Health moderators provided a few questions to the panelists prior to the panel, and my answers were sent off a few days earlier, while BSparl was taking a nap. (Which means I was too exhausted to craft up fancy answers and instead blurted out knee-jerk responses, which were included verbatim in the slides.  Which makes me reconsider using the "draft" option of my email to preserve mine and everyone else's sanity.) 

Here are the questions we were sent, and my answers:

What rules of the road should companies follow when they engage your communities online?

• Always be authentic (aka don't be a big, fat liar)
• Do not judge the actions of online communities (see also:  "Diabetes Police*")
• Contribute to the conversation, don't just try to sell us stuff
• Don't fear the blogosphere:  Show us your face!

What health or pharma company social media efforts are resonating with your community online? [I don't speak for "the community," so I instead listed efforts that resonated for me, personally.]

• Johnson & Johnson (specifically, the JnJ YouTube channel and Animas)
• WEGO Health (not sucking up - they actually help patients attend conferences)
• Roche (Social Media Summit, Twitter acct with actual faces)
  

What would you tell companies to encourage them to support your communities online?

You need us.  In so many ways.  So come talk to us.  We want to hear from you.  Also, bring cookies.  (And with this slide, the WEGO crew had included a photo of some lovely chocolate chip cookies.  I appreciate being humored.  I also love cookies.)

Pharma isn't the big, bad wolf.  The industry as a whole gets a bad rap because there are some dodgy apples in the bunch that ruin Pharma's overall image.  I think that same principle applies to just about everything (there are always jerkfaces in certain groups).  I think that Pharma companies attending events in effort to engage with patients is a good thing. 

"But they only want to profit off our disease.  They want to tap us because they make money off us." 

Good point.  But while that is true on some levels, it's also true that just having them in the room with us is a start.  Because if they're in the room, they can hear us. And if they hear us, they just may start to listen.  

And damnit, there is a chance of cookies.

*  I hate being policed, especially by people who don't know me.  I can take criticism well, and constructively, but I do realize there is a certain risk that comes with putting my personal health information out there for all to see and analyze.  That kind of disclosure opens me up to a lot of scrutiny and judgment.  Part of what I wanted to convey to the attendees of this discussion was that judging people within these communities is a crap idea.  Unless they know what it's like to live with these illnesses, don't just pop in and make disease management suggestions or judgments.  And definitely don't jump in and try to link to your products.  Support and accurate information go a very long way in making a difference in our health and lives.  Don't rag on the diabetic who clamors for cookies.  ;)

Posted by Kerri Sparling at 08:55 AM | Permalink | Comments (8)

Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration. 

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, we're all we've got.

Posted by Kerri Sparling at 09:02 AM | Permalink | Comments (60)

Since I arrived here in Las Vegas on Wednesday morning, it's been a revolving door of some of my favorite people in the medical blogosphere.  And it makes perfect sense, since this is the BlogWorldExpo conference and the Mandalay Bay is teeming with bloggers.  Thanks to the Social Health track that ran yesterday (much more on that tomorrow), I've had the pleasure of meeting up with plenty of familiar faces.

There is so much to tell, and so much information to relay, but for now, I'm going to rely on the power of pictures (because this three hour time difference is seriously kicking my productive rear):

Scott Johnson, Jenni Prokopy, Amy Tenderich, Kerri Sparling, and Manny Hernandez

Mollie Singer, Kerri Sparling, Scott Johnson, Jenni Prokopy, and Jackie Singer

They say that what happens in Vegas stays in Vegas, but I'm excited to share all the stories with everyone ... once I have a nap, that is.

(And, total sidenote - Happy Birthday to my little sister today!)

Posted by Kerri Sparling at 11:25 AM | Permalink | Comments (8)

Recently, I was asked to answer a few questions for a company that was looking to better understand people with diabetes.  I expected a list of questions ranging from "What color meter do you prefer?" to "List all medications you are taking to treat your diabetes, and why." 

Instead, the questions were more touchy-feely than I had anticipated.  And a few of them were hard to answer.  The one I struggled most with was "If you could change one thing about living with diabetes, what would it be?"

My first response was to shrug.  "Everything?  I'd change everything?" 

Then I regrouped a bit.  But still, an answer wasn't jumping into my head as easily as it had for the prior questions.  Somehow, "What or who serves as your motivation or inspiration?" was much easier.  

I'm only guessing, but I think if diabetes comes into your life when you are older, there's a distinct "before" and "after" to your life timeline.  You remember when insulin injections or pumps or glucose meters weren't part of the equation.  You know what it's like to drink juice purely for pleasure.  You have a sense of what you're missing, of what's changed.  I'd imagine that concept makes a diagnosis both easier and infinitely harder, on so many levels.

Diagnosed as a kid, I don't have many pre-diabetes memories at all.  I'm not feel sorry for myself, but it's just a fact.  I don't remember life without any of this medical stuff, and there is no "before."  Just "after."  Only the after part isn't this big dramatic change - it's just "life."

So when asked what I'd change about living with diabetes, I don't have enough life without it to lay claim to a quality answer. I don't give a lot of thought to the meters or the pumps or all the physical trappings of diabetes.  I don't mind because I don't know any differently. 

But I wish I could lessen the emotional impact of diabetes on my life, and on the lives of the people I love.  I wish diabetes wasn't such a fickle mess, and that my mother could safely assume that I'll wake up just fine every morning.  And that my husband wouldn't view the Dexcom as his safety net when he travels without me.  And that I wouldn't have seeds of concern when I'm alone with my daughter.  I wish this stupid disease didn't come with so much worry, and I really would love to change how that worry bleeds into the lives of my loved ones.

If I could tie diabetes to a balloon and let it soar out of my life, I totally would.  If I could flush it down the toilet like a goldfish, I'd do that, too.  I'd let a bear maul it.  I'd allow my diabetes to stick a fork into a plugged in toaster.  And if I had the opportunity to shove it in a microwave like a Peep at Easter, I'd do it in a second.  I'm not a fan of this disease, especially when it makes people worry. 

So I guess my first response was sort of right.  "I'd change everything." ... only I'd add balloons, microwaves, and bears.  ;)

If you could change one thing about your life with diabetes, what would it be?

Posted by Kerri Sparling at 10:26 AM | Permalink | Comments (66)

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I've written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I'm still comfortable with the term "ePatient."  I find it to be empowering - another "e" word - and having it as part of my identity makes me feel like I'm part of a very strong, very forward-thinking community.  Having lived with diabetes for ... forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it's part of my health."  Empowered, electronic, encouraged, engaged ... ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health - or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

Posted by Kerri Sparling at 10:34 AM | Permalink | Comments (6)

Conferences are a good time and a great networking opportunity, but there's NOTHING like hanging out with fellow PWDs (and PWD caregivers). 

Thanks for coming out last night, everyone!  It was awesome!!!

Posted by Kerri Sparling at 08:29 AM | Permalink | Comments (12)

(Post title edited, thanks to input from @kelsse.  :) )  I had a conversation with a fellow PWD a few weeks ago.  She was leading a support group for younger girls with diabetes, but she was having some trouble feeling in control of her own diabetes.

"I've been like 260 all day long.  It's hard to feel like a good role model when you're in such crap control.  I don't feel like a very good advocate these days."

And her comment stuck in my head and rolled around in there like a bingo ball for about two months.  This morning, as I was testing my blood sugar before heading downstairs to make a bottle for the BSparl biscuit, it dawned on me that her question is probably one that every patient blogger struggles with at any given time.  How do you put on a brave face when you feel like your disease management is in a tough spot?  How do you tell people to take control of their own diabetes when yours is roaming around unsupervised?  How do you advocate when you feel like a schlep?

For the last week and a half, I have been a walking diabetes disaster.  I'm still wearing the pump and the Dexcom and I'm aware of my disease, but I'm not managing it.  It's managing the hell out of me, though.  I'm not proactively nailing down any blood sugar trends, but instead am chasing random highs and lows that I KNOW have a pattern somehow, but I haven't motivated myself to really plot the numbers and find their rhythm.  I can count my daily finger sticks on one hand (pun sort of intended).  Overall, I'm treading water instead of making real progress towards actually making changes.

How many times can I say "Tomorrow is a new day"?  I feel like I've been singing the same tune for weeks now.  Is this a patch of diabetes burnout, brought on by diabetes obsessiveness in pursuit of the healthy pregnancy?  Whatever it is, I'm definitely in it and having a very hard time getting myself out.  The problem is priorities.  I have myself fooled into thinking that taking care of the baby, unpacking the house, and continuing my consulting work is more important than diabetes management.  What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn't ever as well done as it should be.  My health needs to come first.  Not last.  Or second to last.  Or finishing somewhere in the bottom five. 

It's hard to come online and admit these things.  I wish I could say that I had the baby and then bounced right back into fantastic control and excellent health.  But I'm struggling.  A lot. It's frustrating and I'm overwhelmed.  I don't make a habit of lying to you guys.  So even though I am trying to make changes, I'm feeling challenged. 

"I don't feel like a very good advocate these days," my friend had said that day.  But what makes her a good advocate is that she tries.  Every day.  And that's what makes the entire diabetes online community such a strong and honest source of support.  It's not comprised of a bunch of people with "104 mg/dl" winking back at them on their meters and a plate of chicken breast and baby spinach leaves smiling in low-carb contentment.  We're a bunch of real people writing about our real experiences with this disease.  And I'm so glad for that because I'm looking at string of several rotten diabetes days in a row, all lending themselves to settling in my brain and making me feel defeated.

You guys make it easier to dust myself off and get back on the wagon.  (Even though it is speeding by like the Acela.)  It's hard to advocate when you feel like a schlep, but it does feel good to be honest.  Honesty helps fuel advocacy.  And it also helps to be supported by people who really get it.  When this community helps lift us out of our respective diabetes burnout phases, it makes all the difference. 

... coffee helps, too.  ;)

Posted by Kerri Sparling at 11:12 AM | Permalink | Comments (39)

I couldn't have thought of a better way to spend my 24th diabetes anniversary than at a Taking Control of Your Diabetes conference in my home state of Rhode Island - and with a bunch of diabetes buddies, to boot!

Saturday dawned bright and early as I headed to Providence for the conference (though not as bright and early as it did for Karen, who was on the road at like six in the morning - she's hardcore!).  Immediately, I ran into Karen and her smiling husband Pete, and then we stumbled into everyone else at the exhibit hall.  

While sessions were interesting and the discussions were lively, the highlight of this conference was the lunchtime speech given by Urban Miyares, a Vietnam veteran who has been living with diabetes since he was 19 years old.  Diagnosed after losing 67 pounds in two weeks and then collapsing on the battlefield in a diabetic coma, Urban was sent home to adjust to his diagnosis.  

Yes, you read that correctly.  He was invited to join the Paralympic team as a downhill skier, and not only did he join, but he won.  Many times.  "But not at first.  My rear end was frozen that first winter, from sitting on the snow so much." 

I couldn't believe how much Urban had been through, and how much of his body had been compromised as a result of diabetes (complications exacerbated by the Agent Orange chemical he was exposed to during the war, his doctors suspect), yet he was up there making jokes.  And laughing.  

And sometimes you meet someone who has experienced so much of the worst this disease has to offer.  And you wonder how you would handle it, if it were to happen to you.

But losing your sense of humor isn't a side effect of diabetes.  Losing your ability to find the good in your life and to grasp on to it with both hands isn't a side effect.  And neither is your ability to inspire.  So thank you, Urban, for showing us that even when you've lost your sight, you haven't lost your ability to help us see what life is all about - laughter and love.

And thanks to TCOYD for such a great event!!

Posted by Kerri Sparling at 10:41 AM | Permalink | Comments (7)

Tomorrow is my 24th anniversary with type 1 diabetes. 

There's a lot I can say about the diabetes community, and how far things have come in the last twenty four years.  How what was once a disease that left me feeling alone and obscure now comes with a welcome bag and a community of people who can lift your chin when it sinks to your chest.  I thought about how many people I knew with diabetes on the day of my diagnosis (one) and how many I know today (far more than I can count).  

I am grateful for all of these things.  

Some years I want to celebrate another year marked with diabetes.  Sometimes I feel defiant, like I just poked diabetes in the chest and told it what's what.  Some years I want to keep to myself, feeling a little jumbled at the thought of so many years with this disease.  And some years I'm a combination of all sorts of feelings, just wanting my husband to give me a hug and have a bite of Fudgy the Whale with me.

Last night, I felt different.  This year's anniversary feels different.  Maybe because there's been so much change in the last year.  Maybe because this day could come and go unnoticed, because an anniversary with diabetes doesn't change the diagnosis.  Doesn't make my health any better or worse.  It's just another box I can check, another year that I can say, "Yes.  I've been at this a long time."  Maybe it's because I will wake up tomorrow and it will still be here, despite these promised cures.  Maybe because I've moved into a brand new place but still have boxes marked "diabetes supplies."  As I unpacked, I reached the bottom of a bin of clothes and found a used test strip and I couldn't even tell what kind of meter it went it, it was so old, and that made me so sad for some reason.   

I tried on a few dresses in preparation for our trip to the Toronto Film Festival and felt upset that my post-pregnancy body still felt so unfamiliar, and that the pump seemed the size of a coffeemaker as I tried to hide it in my fancy garb.  Frustration mounted, and I felt like I was swallowing a scream.  I needed a hug. 

I went into my daughter's room, where she was asleep in her crib.  Her arms above her head, in her 'sleep victory' position.  Her breathing was even and steady, and she wrinkled her nose and rubbed her fist against her cheek as the floors yawned in response to my footsteps.  

Diabetes doesn't define me, but my daughter does. 

I scooped her up without thinking and held her close.  She cuddled close to me, resting her head against my neck and I stood there and felt ridiculous because I just wanted to cry, I was so proud of her.  And so in love with her.  And I realized that what had changed was everything.

Twenty four years with type 1 diabetes is a good chunk of time, but I'm not done yet.  It will be with me when we celebrate Chris's film next week, when we walk with our friends and family for a cure at the end of October, and when we have breakfast together tomorrow morning.

Diabetes is always there.  But it's not me.  It will never, ever be the core of me. Not if I have it for a 100 years.

Posted by Kerri Sparling at 11:18 AM | Permalink | Comments (45)

When I saw "Providence, RI" on the list of cities for the 2010 Taking Control of Your Diabetes conference, I thought it was a typo. 

"Rhode Island?  Who picks Rhode Island for a conference location?"  Pause, and then a grin. "Smart people."

Because Rhode Island is awesome.  (Note:  Born and raised in Rhode Island, I'm a little biased.)  A very short drive from Boston, MA and a decent but doable drive from NYC, my home state makes for a great place to kick off the fall conference season for TCOYD.  

So what are you doing on Saturday, September 11?  I'll be at TCOYD, hanging out at the health fair and attending as many sessions as I can.  I'll also be marking my 24th year with type 1 diabetes that day, and I'm excited to spend my diabetes anniversary at such an inspiring event.  Not a bad way to spend the day. 

If you're in the New England area, give some thought to registering today for the TCOYD conference in Providence.  If you register before tomorrow at noon, you'll score the early bird registration fee of $25.  (It goes up to $30 if you register at the door, so it's a good idea to get involved early!)  And if you're planning on attending, let me know!  I'm excited to meet you!

Posted by Kerri Sparling at 10:23 AM | Permalink | Comments (12)

Diabetes Art Day took place this past September 1st, and so many members of the diabetes online community tapped their inner artists for inspiration.  But what if you missed the day?  Can you still get your art on?

Visit Lee Ann's blog, The Butter Compartment, for more details on Diabetes Art Day and to view some of the submissions! And if you're looking for a labor of love this Labor Day, bust out your crayons (or your Photoshop) and see what you can create!

Posted by Kerri Sparling at 09:29 AM | Permalink | Comments (9)

You know you're a diabetic moving into a new place when:

• You pack extra glucose meter test strips, baby diapers, and toilet paper into the same box because you know you will need both on the first day.
• You're watching at the window for the cable guy so you can get yourself back online and immersed in the diabetes blogosphere.
• You don't care that there's an ice maker in the new fridge, but more than there's a handy compartment that's PERFECT for insulin storage.
• There's a whole box labeled "Diabetes Supplies."
  
• You're grateful that the hardwoods are being installed because it will be easier to find rogue test strips.
• The washer dryer combo looks like a spaceship command unit and you have no idea how to work it.  (Wait, that's just me?  Domestic goddess I am not.)
• Even though the fridge is almost entirely empty, there's still a bottle of grape juice at the ready.  (And a pitcher of iced coffee.  Priorities!!)
• You buy a smaller garbage can for the kitchen to leave room under the sink for a massive, red sharps container.
  
• There's a space in the walk-in closet that's dedicated solely to stacking insets, insulin reservoirs, and test strip bottles.  Not to mention lancets, which I've had the same seven boxes for the last four years and I never manage to use them up.  (Something tells me I should change my lancet today.) 
• And: You test the wall outlets by plugging the Dexcom receiver in to charge.

Posted by Kerri Sparling at 10:21 AM | Permalink | Comments (18)

I've heard that fear is a pretty good motivator.  Over my two plus decades with diabetes, I've heard the "fear tactic" from many medical professionals.  Actual statements:  "Make sure you test or your eyes will become diseased and you'll go blind." And "If you don't take care of yourself, you'll lose a leg when you're older."  And of course, "If you eat that, you'll end up with complications and then you'll have to live with that."  (see also:  ugh)

Fear has never been a good motivator for me.  When I'm scared, I have a tendency to hole up and hide.  When I think about the future of my diabetes, I know there is a good chance I will have some kind of complication. I have sat in the endocrinologist's office far too many times to tune out the threat of "what might happen."  I know what could be brewing.  Like it or not, I understand the effects of unmanaged diabetes.  I work hard to manage diabetes.  But I'm not so hot with managing the fear.

And if, for even a second, I forgot what diabetes complications may be waiting in the wings, I have many things to remind me.  Like the pamphlets at doctor's offices.  And the commercials on TV.  And videos about how diabetes can cost you a leg.  

That video makes me so frustrated because if I had seen it before the diabetes online community had bloomed, I would have been so distressed.  The images in that video would have haunted me, but not in a way that would impact my diabetes favorably.  That kind of video makes me want to stick my head in the sand and pretend it's not happening, instead of taking charge and control of my own disease and realizing I have the ability to impact my future health TODAY.

I think it's more important to remember that there is a good chance I WON'T have some kind of diabetes-related complication. That some combination of good care and good support and good luck (yes, I think some of it is just plain luck) will usher me into my later years without a scary complication. Fear is not the best motivator for me - hope is far more effective.  I hope to be healthy for a long time.  And it's hope that keeps me testing my blood sugar every morning, working with my doctor to best-manage diabetes, and monitoring this monster closely. I don't want images of amputation flashing in front of my eyes every time I go to grab my meter.  I'd rather think about blowing out the candles on my 75th birthday party, a strong and healthy old bird.

Fear?  No thanks.  Give me hope any day.

Posted by Kerri Sparling at 10:47 AM | Permalink | Comments (35)

Crayons.  Markers.  Colored pencils.  My childhood was spent coloring and drawing on papers, walls, books, and the occasional cat.  (When you have a calico, everything blends beautifully.)  Artistic expression for me, as kiddo, was so important to my mental health, even though I'm sure it came at the cost of my mother's mental health.  (She had to clean off the walls now and again.) 

There's something so therapeutic about art, whether you color in the lines or all over the place.  It feels good to express yourself artistically.  I have some friends whose paintings look like photographs, and ones whose photos look like beautiful watercolors.  Their talent amazes me, and I envy it.

Because I am not artsy fartsy.  I wish I was.  I can't draw or paint of sculpt up anything remotely recognizable.  But thankfully, being "artsy fartsy" isn't limited to the classically talented.  You can let you art out by means of crayons, or sticking googly eyes on mustard jars, or creating a log cabin out of old glucose vials.

Which brings me to the point of this post:  Diabetes Art Day.  September 1st has been deemed Diabetes Art Day by the diabetes online community's resident art therapist, Lee Ann Thill.  Here are the details, courtesy of Lee Ann's blog post:

"I’m asking you to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. I’m sure most of you don’t consider yourselves artists, but I think that you are, and just haven’t discovered it yet. Then, once your masterpiece is complete, post it on September 1st. If you want to get your family involved, maybe each of you can create something, or you can even do a group art project. The possibilities are endless if you use your imagination!"

Even though my talent is limited, I'm very excited to participate in this advocacy effort.  And I can't wait to see what everyone submits for September 1st!

(For more details, please visit Lee Ann's post on Diabetes Art Day.)

Posted by Kerri Sparling at 10:17 AM | Permalink | Comments (4)

Babies, babies, everywhere!  In particular, there are babies in this month's issue of Diabetes Forecast, with a focus on pre-existing diabetes and pregnancy.  I'm very proud that BSparl and I had the opportunity to share our story with the Forecast readers, and that the photographer who visited our home wasn't too bothered by the cat hair.

(One quick note after reading through the "Guide to Pregnancy" article in the magazine:  Diabetes is tough. We know that.  Diabetes and pregnancy is tough, amplified.  But don't let the long article about "what could happen" sway you if you are planning to pursue a pregnancy and you have diabetes.  The information in that article is important, accurate, but can admittedly be overwhelming.  Not all diabetic pregnancies encounter the same kinds of complications that mine did - everyone's experiences vary.  Just know that information overload comes with any pregnancy, and diabetic ones are no exception.  We may get some added bonus worries, but the end result of our pregnancies can be just the same as the pregnancies of non-diabetic women:  a healthy baby.  Take all of the information you read online in stride, including the stuff I've posted here.  It's a lot of hard work, but like they say, it's so, so worth it.)

And with that, I'm off to give the BSparl a snuggle.

Posted by Kerri Sparling at 10:30 AM | Permalink | Comments (19)

Diabetes isn't simply about blood sugar meters and doctor's visits - there's a decidedly emotional side to this disease, and to me, taking care of those emotions are just as important as maintaining a good A1C. And in the last few months, there's been a collective effort by the Diabetes Hands Foundation to create a book of poetry for people and by people with diabetes to help raise diabetes awareness ... and our spirits.

I'm proud to be part of the No-Sugar Added Poetry book, written by members of the TuDiabetes community and published by the Diabetes Hands Foundation with sponsorship from Roche.  There are a lot of familiar faces contributing to this book (Amylia Grace, Miriam Tucker, Heidi Shell, and Kerri Sparling [in third person], to name a few), and the power of this poetry is tremendous. 

If you are looking for a way to tap into the diabetes soul of your fellow writers, or if you are someone who loves a PWD and is looking to understand a slice of diabetes life, this book should be part of your collection.  

We all deal with this disease in different ways, but through the power of poetry, we're able to share - and heal - in ways that can't be bottled.  This book is proof that something truly beautiful can be born from adversity.

To order your copy, visit the No-Sugar Added Poetry page on TuDiabetes.  

Posted by Kerri Sparling at 10:33 AM | Permalink | Comments (9)

So here's a trend:  Today, I woke up to the sound of my baby cooing from her bassinet.  My hands reached over to the Dexcom receiver and I clicked on the button to light up the screen.  I saw a "74" and an arrow trending oh-so-slightly down.  So while Chris changed the baby, I went out to the kitchen to grab a swig of juice before settling in to breastfeed BSparl.  I fed her and then went into the living room to play with her.

Notice any problems here?  Anything ... oh, I don't know ... missing?  Like maybe a blood sugar check when I woke up?  Or at least one after I fed her?

Nope.  Nothing.  No test.  I went all the way from waking up to freaking NOON before busting out my meter.  This is a terrible trend.  And it's happened twice in the last four days.  I'm relying way too much on my Dexcom for guidance, instead of double-checking every hour or two with my meter.  I mean, missing a fasting blood sugar?  I've never, ever done that before.  Even in college, when I was at my diabetes worst, I still tested first thing every morning.

This is not a trend I want sticking.

Here's another trend:  For the most part, I am BSparl's daytime friend.  During the day, Chris leaves our home office for a distraction and baby-free zone where he can focus on his writing.  So for several hours a day, BSparl is left to her mommy's devices.  (Including, but not limited to, visiting friends for lunch dates, running household errand-type things, and my own attempts to get work done.)   When I'm hanging with the baby, getting to the gym is impossible, and with the weather so hot and humid lately, I don't feel comfortable taking her for a walk in the stroller.  By the time Chris gets home, and we talk for a while, and we have dinner, etc. etc., it's suddenly so late that it's almost time for Colbert to come on.  (NATION!)  And I'm too exhausted to hit the gym.

This is not a trend I want sticking, either.  

A lot of the baby weight has come off (thank you, breastfeeding), but I am in desperate need of some muscle toning.  I need to get some workouts in as part of my schedule in a hurry, because I'm growing tired of feeling flumpy.  Before I got pregnant, I felt good about my body.  Now?  I need a little more effort to get back to fighting shape, or at least faux-fighting shape.  (Like the kind of fighting that includes throwing styrafoam peanuts.  Or something similar.)

The trends of missing blood sugar checks and workouts must end TODAY.  These habits are too damn crappy to let them continue.  I can't let these two trends wreck my goal of good health.  Small changes can make the biggest difference, so as of this moment, I'm realigned myself to test every morning and to get some exercise in at least four days a week.  (I was doing five days a week for years, so four days isn't a bad starting point.)  And it doesn't have to be a gym workout - I'll take anything from a long walk with the stroller and BSparl to an ellipmachine workout to a bike ride. 

Why am I rambling on about this?  Accountability, my friends.  By telling you, I'm setting myself up to be accountable for my actions (or lack of action).  It worked in helping me get my diabetes reigned in for pregnancy, and I hope accountability can help me get my act together to be a healthier mom.

Posted by Kerri Sparling at 02:10 PM | Permalink | Comments (21)

I love Clara Barton Camp.  I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds.  Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.

And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed.  Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).

When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs.  "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC.  Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.  

"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm.  But seriously, cabins having bathrooms is amazing.  My mind is blown."

Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes.  I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had.  And the audience with the highest percentage of diabetes!  According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis! 

We all hung out in the dining hall and just chatted.  It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home).  They had a lot of questions about managing things like college, dating, and of course, the whole baby thing.  I tried to be as honest as I could be, toeing the line between "one of them" and "an adult."  Like when they asked me about drinking.  "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true.  But I can't lie and say that I didn't drink in college.  So here's what my experiences were like ..."

It was an incredible night.  These girls are a group for the entire diabetes community to be proud of.  Their energy, their endless smiles, their excitement for everything.  They took pictures (some goofy) and burst into song at the mere mention of the word "song."  (Video of a song about ketones coming at you ... now:)

Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there.  It sounds cheesy, but it's true.  CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay.  I asked some of the staff members to tell me what camp means to them.  Their responses were varied, but all hitting on the same general theme:

"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool.  The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."

But my favorite was when one staff member raised her hand and said, "It's the happy bubble.  This whole place makes me feel like I'm in a happy bubble."

Clara Barton Camp is definitely one, big happy bubble.  And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today.  Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt.  (And props to Savannah for rocking those mismatched galoshes!)

Posted by Kerri Sparling at 08:42 AM | Permalink | Comments (26)

I've had a chance to attend several CWD "Friends for Life" conferences in the last few years, and it's been one of the most inspirational times in my life.  All those kids with their meters stashed in their backpacks, their pumps stuffed into their pockets.  All those adults who are living well, and honestly, with diabetes, sharing their stories "from the trenches" and leaning on one another for support.  All those parents of kid with diabetes, finding hope and inspiration in every person they have the chance to meet.

Don't let the name of the organization fool you - Children with Diabetes isn't just about small children.  Becoming "friends for life" isn't limited to seven year olds.  But the conference used to be geared towards kids and their parents, and we are being given the chance to round out that agenda a bit.  

Today, I'm asking that you visit Scott Johnson's blog at Diabetes Daily, check out his post "Adult Type 1 Conference," and to please leave your feedback.  We're aiming to have a track at FFL next year for adults with type 1 diabetes, but we need to make sure we're creating sessions that type 1 adults want to attend.  (Here is a link to the focus groups that took place in 2010, and the adult/parents schedule, just to give you a feel for what has already been discussed.)  Your feedback is crucial and can help to shape the new face(s) of the 2011 conference.

Thanks in advance for all of your feedback!!

Posted by Kerri Sparling at 09:05 AM | Permalink

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.

I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

Posted by Kerri Sparling at 10:41 AM | Permalink | Comments (10)

On Monday afternoon, BSparl, Chris, and I boarded a plane bound for Orlando, Florida.  (It was our first trip with the baby - more on that later, because I'm still processing all the stuff required to travel with an infant.)  My trip was dual-purposed:  to attend the Roche Social Media Summit and then co-lead a focus group on Wednesday morning at Friends for Life. 

Like everyone else, I have a disclosure with this:  Roche paid for my plane tickets to and from Florida, and they also covered my hotel room for Monday and Tuesday night.  But they didn't hold me over a shark tank to gain input from me, and I am also still using my brain on my own, so basically they can only claim travel, food during the conference, and lodging.  They also didn't ask us to blog about the event (even though they knew we would).

But like I said last year, Roche is smart because they know by bringing together a pile of bloggers, Roche will be discussed on a pile of blogs.  And also in step with last year, Roche treated us respectfully and worked hard to make sure we were happy, as a group.  But I can't lie:  I was excited to attend this event because it would put me in "real life" touch with my extended diabetes family.  The invitation coming from Roche makes it a "Roche" event, and I can't hide my bias when it comes to being grateful to them for having the opportunity to socialize with my social media friends.  So that's the full disclosure. 

The event took place as a bookend to the CWD "Friends for Life" conference, which seemed to dictate the timing and location.  I think there was a total of thirty-seven bloggers, representing the type 1 community heavily, but with voices from the type 2 and caregiver crew as well, and we were hanging out in a conference ballroom at the Orlando Marriott all day on Tuesday.  

The Roche representatives were very cool to us, and didn't seem to have an agenda of expectations - just an agenda of events.  They had us engaged in discussions about meter accuracy and they also invited in representatives from the American Diabetes Association and the American Association of Diabetes Educators to talk with us.  I felt a little quiet during these discussions (thanks to the utter lack of sleep the night before, with BSparl not adjusting to the travel schedule and deciding to stay up until about 4 am), but I kept an eye on the Roche reps during the chats, because I wanted to see what they were reacting to. (That, and there was this long table set up at the back of the room, where a few of the Roche team members sat, watching us.  So I went over to them and let them know I was watching THEM.  Now the student has become the teacher, grasshopper.  /Confucius rant)

Overall, discussions were interesting.  Meter accuracy has been a hot topic for a while now, with the FDA meetings and an explosion in the blogosphere, and it was a topic of utmost importance for me during the course of my pregnancy.  It amazes me still that meters are "allowed" to be 20% off, and that we almost have to choose accuracy over cost when it comes to test strips.  (More on that later.)  And while the ADA panel of guests answered questions, I still couldn't help but wonder how the ADA spoke for me, as a person with type 1 diabetes.  (More on that later, too.)  

But the Summit itself wasn't about the discussions or the agenda of our host Pharma company.  (Even though, and I'm being completely honest here - I'm impressed that Roche wants to sit in the same room with a bunch of bloggers.  We aren't known for being quiet or demure, that's for damn sure, and we don't have a penchant for butt-kissing.  So they get us and our opinions, raw and unadulterated.  Yet, this is the second year they've invited us to meet with them.  I remain impressed.)  The Summit is about bloggers getting to know one another offline, and whether or not Roche understands that aspect wins out over any Pharma agenda, it doesn't matter.  People power wins over scheduled discussions.

So thanks to the Pharma company that dared to play host to bloggers for the second year in a row.  And thanks to the diabetes blogging community, which plays a huge part in improving my emotional diabetes health. 

(Oh, and thanks to the Photobooth, which let Scott and I pretend to be lions in the first shot and let us see up George's nose in the last one.)

Posted by Kerri Sparling at 11:34 AM | Permalink | Comments (7)

In the airplane safety manuals, they instruct you to, in the case of an emergency, put your oxygen mask on first, before assisting others with theirs.  Makes sense.  Can't help someone if you are in need of help, yourself.

Chris and I reference the "oxygen mask" all the time, mostly when I'm low.  During the course of the pregnancy, I had some wicked lows that kept me from attending conference calls, making it to dinner meetings, and even just meeting a friend out for coffee.  "I'm going to be late, but I need a few minutes.  Oxygen mask, you know?"  And Chris would nod, knowing that I was waiting until my blood sugar was stable before I headed out. 

But as I wrote about yesterday, I'm in the middle of The Suck.  Can't wrap my head around what I need to do in order to take care of myself, because I'm too overwhelmed with what my daughter needs.  The baby learning curve is pretty steep, and both Chris and I being schooled on just a few hours of sleep.  My baby is well-cared for, but my diabetes management has seen better days.

... so I guess my baby isn't as well-cared for as she could be.  Because I'm trying to put her oxygen mask on while fumbling with my own.  

Yesterday's post had some good ideas in the comments section, and I'm going to try and implement them going forward.  Like the testing suggestion.  I'm already testing my blood sugar before I feed the baby, so now I need to find other benchmarks in my day to assign testing to.  I'm working off a mental "even numbers" schedule today, making sure that I test at all the even hours.  I'm awake around 6:15 am every morning, so that means I get a 6 am fasting, and then a test every two hours. 

Some other things I simply need to make part of the routine.  So it becomes natural(ish).  Like the Dexcom.  That tool is extremely useful to me ... when I look at it.  For the last 11 days, I had a sensor in and the Dexcom was working great, but I wasn't looking at it.  The receiver would sit on the dining room table while I worked on my laptop and I'd barely pay it any mind.  Then, one night when it was pinging because I was high, I turned off the high alarm so that it wouldn't wake up BSparl.  Being the dingbat that I am, I left the high alarm off.  For four days. WTF?  What's the point of wearing the device when I'm not using it when I need it most?  Today, a new sensor goes on and I'm determined to reset the alarms and to actually use the data.  (Otherwise, what's the point?)

And then there's what Chris and I call "life stuff." Like remembering to call in my reorder for insulin to my mail order pharmacy.  And then remembering to pick it up from the mail drop.  Or remembering to throw a bottle of glucose tabs in my purse or the baby bag, or grabbing a back-up insulin pen, or making sure I have enough test strips in my meter case to get through the day.  Maintenance.  Life stuff. 

But I can't do all this stuff at once.  Baby steps, right?  Today, I'll start with testing more frequently and rearming myself with the Dexcom.  I threw a bottle of glucose tabs both into my purse and the baby bag this morning, and I called in my insulin reorder a few minutes ago.  New bottle of test strips is floating around in my purse.  Small changes that will hopefully make a big difference in how things roll out, diabetes-wise.  Because the better care I'm taking of myself, the better care I'm taking of the little BSparl baby.

Oxygen mask, you know?

Posted by Kerri Sparling at 09:26 AM | Permalink | Comments (25)

While motherhood is going well and I'm completely in love with my daughter, I'm reminded, daily, that diabetes doesn't care if I've slept or if I have carefully counted carbs or if I've just changed my infusion set.  Diabetes doesn't give a shit about my schedule.

It's The Suck.

Like last week, when at 4:30 am, my "alarm" went off - also known as BSparl starting to fuss and wail from her bassinet in our bedroom.  Not a problem.  I woke up, tested my blood sugar, and saw that I was 176 mg/dl.  That number (albeit spiky) works just fine for feedings, so BSparl and I spent some quality time hanging out, having an early snack, and debating where exactly the sun hides behind the trees before it starts to poke out.

We both went back to bed around 5:45 and slept until the next alarm went off - the Dexcom BEEEEEEEP!ing wildly at me at 8 am.

"Do not wake up the baby, you."  I grumbled while fumbling for the receiver on the bedside table.  "LOW.  Under 55 mg/dl" was the warning it was flashing up at me.  While BEEEEEEEPing.

"Shhhhhh!!"  I unzipped my meter case and deftly stuck a strip into the top of the machine.  I wasn't sweaty, my brain was functioning fine (aside from shushing inanimate objects), and I felt physical capable.  Maybe the Dexcom was just being finicky and throwing lower numbers?

"36 mg/dl"

Well shoot.  Not a whisper of a symptom, either.  I got up from the bed and wandered out to the kitchen, where Chris was making his protein shake.

"Can you keep an ear on the baby?  I'm 36 and just want to grab some juice," I said, opening the fridge door.

"Of course."  Pause.  "What?  You're 36??"

"Yeah.  No symptoms, dude.  Not even one."  I chugged a few sips of grape juice and put the bottle back in the fridge.  "I feel fine.  The Dexcom woke me up."

A blood sugar of 36 mg/dl without a single symptom, other than a wailing Dexcom and a bit of a groggy feeling.  But, in true diabetes form, once my blood sugar started to rise, I felt the symptoms acutely. 

"I feel pretty bad right now."  Shunk.  "Fifty-six.  Why do I feel worse at 56 than I did at 36?"

There's no rhyme or reason to diabetes.  The symptoms of lows and highs change with the seasons, it seems.  And they come without warning, these numbers.  Sometimes it's a hormonal or emotional surge that sends numbers pinging.  Other times, it's a little, teeny technical glitch that sends thing spinning.

Like two nights ago, when I bolused for a snack and felt a damp spot on the side of my shirt.

"What the ..." and I probed with my fingers and felt that telltale wetness around the gauze of my infusion set.  I tugged up the side of my shirt and gave the spot a sniff - yup, that bandaid smell.  Frigging infusion set was leaking some how.  No symptoms, though.  I wasn't thirsty, I wasn't lethargic, and I was actually just about to head off to the gym.  I felt pretty okay.  Problem was, I hadn't tested in about four hours, nor had I peeked at the Dexcom.  So basically, I didn't have a clue what was going on in my body. 

I tested my blood sugar and a 423 mg/dl grinned back at me.   

(Have I mentioned Yosemite Sam yet in this post?  Suffice to say, I rocketed through a list of curse words that would have caused Yosemite Sam to give me a frick-a-frakin' high five.)

New site, quick injection with an orange capped syringe from the fridge, a ketone test (negative), and an hour and a half later, I was down to 195 mg/dl.   But I was pissed.  Because during the course of my pregnancy, I maintained an A1C between 6.0% and 6.5% and I busted my butt to keep myself controlled.  But now, with my body reacting to adjusting levels of hormones and a serious lack of concentration due to a truncated sleep schedule (read:  no sleep 'til Brooklyn, with Brooklyn being college, I think), I'm all over the map. 

I'm frustrated with my control, or lack thereof.  Trying to figure out my post-pregnancy insulin needs and taking care of my little girl have become a full-time endeavor, and I'm not getting it completely done on either front.  I have to buckle down.  These epic lows and highs are not fun, and are wrecking havoc on my healing body. 

Next week, I'm back at Joslin to see my endo.  Diabetes needs to take center stage until I can get things under better control.  It's my priority.  I need to get back to logging, to testing every hour and a half or so during the day, to actually cooking meals instead of just snacking when time allows, to changing my infusion set when it's due, not when it's convenient. 

... after diaper changes, of course.  And breastfeeding.  And BSparl laundry.  And pediatrician appointments.  And 3 am feedings.  And that occasional moment when I lock the bathroom door and look at myself in the mirror with determination and say, "Get it together, Mommy."  

Posted by Kerri Sparling at 11:01 AM | Permalink | Comments (25)

I was thinking about today's DBlog Week prompt, and trying to figure out my "biggest diabetes supporter." 

Would it be my mom, who learned to pinch hit as my pancreas before I started second grade, making sure I had a childhood that wasn't owned by diabetes?  Would it be my friends, who instinctively carry tubes of glucose tabs in their glove compartments or purses without even realizing it?  Would it be my pediatric endocrinologist, who never forgot that liking boys and sleep overs at my best friend's house were just as important as blood sugar logs and insulin injections?  Would it be this online community of fellow diabetics, who understand that there's a real life to be lived, even after diagnosis?  Or would my hero be my husband, who has championed my health and made me feel like I was every bit his bride, no matter what the status of my pancreas?

There are so many people who are part of my life with diabetes.  But life is more than all this diabetes stuff.  Diabetes doesn't define me.  (Have I mentioned that before?)  And it doesn't define my relationships, either. 

In my head, diabetes is just one part of the core of who I am.  And the people who support me, and my diabetes "stuff," are part of the scaffolding that keeps me steady.  Diabetes is a constant in my life, but also a constantly shifting priority.  Some days, I don't need much help or care and diabetes maintenance is on the back burner of my life.  Other days, it's a huge part of the day and requires a lot of attention.  And then there are the in between days.  But regardless of how loudly diabetes is fussing on any given day, the people in my life who support me aren't viewing my health as a project we need to constantly discuss or assess.  It's what we do, as a family, almost without thinking. 

And those people I mentioned - my parents, my husband, my friends, my medical team, and you guys - are the permanent scaffolding in my life.  The structure that I almost forget is there sometimes, because it's folded so seamlessly around the rest of my life.  You all help me repair and maintain my health, wrapping neatly around the whole of me and keeping me standing tall and strong.

On the easier days, I take it a bit for granted. 

But on the hard days, I'm able to stand tall, thanks to this support.

Posted by Kerri Sparling at 02:10 PM | Permalink | Comments (12)

For D-Blog Week, Karen challenged the diabetes blogging community with a week's worth of blog prompts. Today is "A Day on the Life," and I've decided to focus on my new life with BSparl.  (Because if I tried to pretend that motherhood isn't affecting my diabetes, I'd be lying my face off.)

DING!!!  Game on.

5 am:  Alarms?  We don't need no stinkin' alarms.  Because now we have little baby girl who wakes us up at all hours of the night. 

When BSparl starts to fuss from her bassinet, either Chris or I leans up to check on her to make sure she's okay.  Since Chris usually does the 1 am feeding with a bottle, I try and do the 5 am feeding.  Since I'm breastfeeding, what I need to do first is check my blood sugar.  Anything less than 120 mg/dl and I'm snacking while she's eating.  I start this feeding at 98 mg/dl.

5:15 am:  BSparl is done with one side.  I switch her to the other side to finish eating, and I brush the foil wrapper that the fruit snacks came in to the floor.  

5:45 am:  BSparl is fed, burped, changed, and tucked back in.  I test my blood sugar again - now I'm 74 mg/dl and the Dexcom is showing a bit of a drop.  I wander out to the kitchen for peanut butter and a piece of toast.  (Not froast.) 

7 am:  Up again, only this time because the Dexcom is blaring at me.  49 mg/dl.  WTF?  Breastfeeding has very unpredictable effects on my blood sugars.  Some mornings, it doesn't make me low at all.  And then other mornings, it makes me plummet.

7:30 am:  BSparl and Chris are asleep in the bedroom, so I settle in on the couch with my laptop and a cup of tea.  My goal?  Answer some emails, write a blog post, finish some stuff that always seems to be due and I'm chasing the deadlines of, and use the breast pump to stash some milk for BSparl.  My insulin pump tubing sometimes gets tangled up in the breast pump tubing.  Which makes me think I'm wearing too many freaking pumps.

9 am:  Husband and daughter emerge, both sporting the same furrowed brow of the morning.  BSparl needs to be fed again, so I test my blood sugar to see where I'm at.  145 mg/dl - thank goodness.  Enough with the lows.  Bring on the BSparl!

11 am:  All of a sudden, it's almost noon, and I haven't eaten anything since 7 am.  I also haven't answered a single email.  Or finished the article I needed to finish.  My mornings are usually spent testing my blood sugar, feeding BSparl, changing her diapers (which have baby Sesame Street characters on them, which makes me laugh.  Because what do you call "Baby Big Bird?"  Little Bird?), and doing laundry.  I test my blood sugar - 118 mg/dl - and thank God that it's not pinging all over the damn place today.  Because some days it does. 

High Noon:  Still haven't eaten.  I force myself to stop and devour a Greek yogurt.  Blood sugars are holding steady.  But my pump site is aching a little - when was the last time I changed out the site?

Noon-thirty:  BSparl and I investigate the site.  Well, she hangs out in her bouncy chair on the bathroom floor while I take a look at the infusion set.  Looks fine - edges are peeling a bit - but it's only been four days.  Even though the reservoir isn't anywhere near empty, I opt to change the site because it's achy.  And because if I don't do it now, while I'm thinking about it, it will be another full day before I remember.  With all of my focus on BSparl and adjusting to life as her mommy, sometimes diabetes takes a wicked back seat.

1 pm:  New infusion set is in, baby girl is getting a bottle of breast milk because my own breasts need a break sometimes, and I still haven't answered one single email.  Is this why people take maternity leave?  I need some coffee.

2:15 pm:  Thirsty as all hell.  Test again - oh, that's nice.  233 mg/dl.  Frigging pump site change ... did I forget to take a little 0.3u bolus before pulling the site?  That seems to be the only way for me to avoid post-site change highs.  But of course, I had forgotten to do that.  And now I'm basking in the warm warming glow of a high blood sugar.  FanTAStic.  Still haven't eaten lunch, and now lunch is on a further delay due to the high.  I bolus down the high.

2:45 pm:  Dexcom shows that I'm dropping.  Meter confirms the same - 177 mg/dl.  Thing is, with the baby now out of me, I'm trying to figure out what my body's insulin needs are.  And that's tricky, because with breast feeding, I am never able to do an accurate basal test.  I have an appointment with Joslin in two weeks (for my 6 week follow up after surgery/birth), so I'm trying to log blood sugars to give my endo something to go on.

2:46 pm:  CRAP!  I haven't logged any blood sugars in three days!  With BSparl in my arms, I open up my laptop and try to find the spreadsheet.  I locate it, and then try to scroll through my meter memory and type the blood sugars into the spreadsheet using one hand.  BSparl decides this isn't a good time for her, and she makes a sound not unlike a can of shaving cream being deployed.  (She is a delicate, fragile, pooping flower, this child of mine.)  Diaper change time!

3:30 pm:  Lunch.  Finally.  Blood sugar is 109 mg/dl.  Lunch is a turkey and cheese sandwich, even though I'd much rather go low-carb these days to help lose the pregnancy weight.  But without carbs, I'm low all the time after feeding BSparl, so carbs it is. 

4 pm:  Time to head out to the grocery store and then to the post office.  BSparl hangs at the house with her dad while he works, and I test once more before getting into my car.  167 mg/dl.  How is the post-prandial that high?  I counted those stupid carbs.  My insuiln:carb ratio, I thought, was settled back into 1:12.  I need to test that ratio again, but no time today.  Must run errands.

4:04 pm:  As much as I love my daughter, I felt guilty blasting the Beastie Boys while she was inside of me.  Without her in the car, I can crank up the volume of the music again.  So i do.  As I head to the grocery store.  Damn, my life is a thrill a minute.

5 pm:  Walking out of the store, I realize that my Blackberry has been pinging for three hours and I haven't looked at it yet.  Checking the emails, I see that 75 emails have come in since 7 am.  And I STILL haven't answered a single one.  Whoops.

6:30 pm:  It's time for BSparl's dinner.  And then we read a book together - I like Dr. Seuss, but sometimes we read other books because I can only make my mouth navigate words like "Th'need" so many times before I start to either giggle or accidentally spit on my daughter while reading.  

7:45 pm:  Chris heads down to the gym and I prepare to go when he gets back.  (No, I'm not really "exercising."  Can't for another two weeks, due to the c-section.  But I can go for walks on the treadmill, so that's what I do.)  I test my blood sugar (139 mg/dl) and get all my crap together for the gym:  Dexcom receiver, meter, cell phone, reaction treaters, and that ever-elusive pair of workout pants that actually FIT. 

9 pm:  Back from the gym, blood sugars are steady for once, and BSparl is napping.  FINALLY, I answer some emails and finish up that article.  Oh crap - dinner!  I find something in the kitchen that doesn't require much assembly.

11 pm:  I realize that, since 5 pm, I've either fed BSparl or pumped six times.  How is that even possible?  Sure does account for the unpredictable blood sugars, though.  My body is in a constant state of "feed," making trends nothing short of chaotic.  And I have to be honest - I'm not sure I have the mental bandwidth to wrangle in diabetes and motherhood with any kind of precision these days.  Working off of very little sleep, and trying to understand the new swell of hormone changes in my body, is frustrating as hell.  Diabetes fine-tuning isn't my top priority these days.  I just want to coast as safely as I can at the moment.  (Note to people who may want to lecture me about my own health: Back off for a few weeks before you run cryptic commentary.)

Midnight:  What am I thinking, still awake??  BSparl will be up in two hours for her 2 am snack.  I'd better restock the bedside table with low blood sugar snacks and call it a day.  

Midnight-thirty:  Whoops, forgot to test.  94 mg/dl.  Dexcom confirms it's a steady number.  Off to bed!

Game Over ... until 5 am.  :)

Posted by Kerri Sparling at 10:43 AM | Permalink | Comments (29)

I've received a lot of emails about the how diabetes will be handled during the actual "birth" of Ms. Bsparl, and while I won't have all the details until it's all over with, I do have a few answers for now.  I talked with my OB (who will be performing the c-section) and my team at Joslin about some of the details.  This might be a detailed, kind of boring post, but I wanted to make sure I'm answering all the questions possible! 

Here's what I know so far:

On Wednesday night, an IV will be "installed" in preparation for the insulin drip.  I'll still have my insulin pump on, though.  As of midnight on Wednesday, I won't be able to eat anything from that point until post-surgery, so the IV will be at the ready in case I go low during the course of the night.  In the event of a low blood sugar, my team will do one of the following:  suspend my insulin pump, administer glucose through the IV, or potentially allow me to drink apple juice, depending on the circumstances. 

The c-section will be first thing in the morning (8 am), so the night before will be spent checking my blood sugar with the glucose meter every 30 - 45 minutes to ensure the tightest, steadiest control possible.  In my circumstances, I plan to keep the Dexcom connected throughout the night, too, to help with that goal.

The morning of the c-section, I'll get up wicked (pissah) early (5:30 am, I think) and I'll rip out my insulin pump and remove the Dexcom sensor.  The nurses will hook me up to the insulin drip and my blood sugar will be monitored - wait, strike that.  Stalked.  :)  I'll be hooked up with the drip, etc by 6:30 am and up to the delivery room.

We'll move into the operating room and my blood sugar will be monitored stalked by the Joslin team while the OB/GYN team prepares to deliver my baby girl.  Chris will be in the waiting room while they administer a spinal epidural (Do not Google this, because it will make you cringe.  I made the mistake once of Googling it.  Never again.  It made me want to give birth orally.) and then they will ensure that my lower half is numb and ready for surgery.  Chris will scrub in and be brought in to the room, where he'll be situated up near my head and the surgery will begin.  My team said that Chris is welcomed to hold my meter and test my blood sugar at our discretion, and the Joslin team will be doing the same using their meter or mine, depending on our preference.  But if I feel nervous about going low, etc, I am able to keep tabs on my own numbers. 

During the course of the surgery, I'll have a regular IV in for fluids, etc, and then the insulin drip will be combined with a glucose drip, the contents of which can be adjusted based on my blood sugar needs.  So if I start to spike, they can increase the insulin titration.  If I start to drop, the glucose can be turned up.  All of this is handled by the Joslin team, so my OB team can concentrate on BSparl's escape.

According to my doctors, the whole c-section will take about an hour, from start to finish.  Bsparl should be in Chris's arms by 8:30, and I should have all my pieces back together again by 9:00 am.  I'll be brought to the recovery room and Chris and BSparl will join me soon thereafter, barring any issues.  The insulin/glucose drip will remain in until I'm able to eat something, at which time the pump will be reconnected (by me), and after an approximate 30 minute overlap, the insulin drip will be removed. 

The Joslin crew told me that my postpartum insulin settings on the pump will be a whisper of what they were during the pregnancy, and about a third of what they were pre-pregnancy.  At this stage, they're assuming that I'll jump down to a midnight to midnight basal rate of 0.3u, an insulin-to-carb ratio of 1:20, and a sensitivity factor of 1:80.  (My pre-pregnancy basals were more around the 0.4 - 0.6u range, an I:C of 1:10, and a sensitivity factor of 1:55.)   And once I'm breastfeeding, all bets are off as to how that activity could affect my blood sugars.  Only time will tell. 

So that's the low-down on how the diabetes, at least, will be handled during delivery.  I don't want to think too much about the surgery itself, because it freaks me out.  But handing over all of my diabetes control also has me a little tweaked.  After over 20 years of doing it myself, it's hard to grasp the concept of "let someone else handle it entirely."  But I know I'm in capable hands with Joslin, and I know that my focus needs to be on the baby. 

She's worth every hurdle that we, as a family, have overcome to make it to this point.

Because at some time during the whole ordeal, her little teeny cry will cut through all the noise, and in that moment, I'll become a mom. 

Posted by Kerri Sparling at 10:22 AM | Permalink | Comments (65)

Today is a BSparl day, and I'll be at the doctor's office for the majority of the day, having blood work, attempting to depuff Le Puff, and spying on my baby girl as she goes her moving and shaking in there.  I wanted to revisit a post from almost three years ago about the delicate balance between advocacy and pity. 

I love me some advocacy, but pity?  No thanks.  I'm all set with that.

*   *   *

I see a lot of marketing materials from various diabetes organizations, publications, and websites.  The messages are varied, to say the very least.  They're all are asking for your support, most often financially, to either raise awareness of diabetes or march towards a cure.  That much is definite.

The variances are to be expected, though.  This disease doesn't follow many rules.

The curious thing to me, after having seen hundreds of these materials, is how different companies chose to portray diabetes.  Some companies show the 53 year old man sitting next to a dialysis machine.  Others show a small child, running in a playground, smiling despite their diagnosis. A crying child being injected in the arm with a syringe, clutching their teddy bear?  A smiling, healthy-looking person testing their blood sugar?  Or a sullen, sad person taking their medications as a tear of hopelessness runs down their face? 

Mixed messages ranging from "I can do anything!" to "I can't do a damn thing."  Ah, the many faces of diabetes.

I can understand the "pity ploy," because if you show the face of a small, hopeful child with their whole life of promise ahead of them, it's a bit easier to ask for money.  "How can you sit there and not help the children," sort of endeavor.  From what I've seen, people don't feel as pressed to donate towards a cause that shows images of people living healthy lives with diabetes.  It's the proverbial pain and suffering that draws people in and tugs at their wallet. 

It's just a strange thought that portraying myself - ourselves- as healthy people may actually keep people from supporting our cause.  "She doesn't need our help.  See, she's just fine with her insulin pump and exercise regimen and doctors.  She's fine." 

What these marketing documents can't convey is the constant thread of "make sure you" that runs through my mind. 

Make sure you bring your meter in case you need to test.  Make sure you have juice and insulin, for either a high or a low blood sugar flip.  Make sure you go to the doctor to have your A1c taken to keep you on track.  Make sure you have a job with good medical insurance so you can afford all the supplies you need.  Make sure you have friends and family who can support you on your journey with this disease.  Make sure you don't overindulge/undereat/over-compensate/under-estimate. 

Make sure.

I'm confused at times, because while I'm young and healthy and in control now, I wonder what my future will hold for me.  I hope I'll always be healthy.  But I'm never sure.  I can't really "make sure."  I can just keep trying.  And hoping.

Can marketing materials tap that uncertainty?  Can they show the efforts we put forth to achieve good health?  What kind of picture or tag line or template would they use to show our lives?

Posted by Kerri Sparling at 09:08 AM | Permalink | Comments (11)

Wait ... coverage can't be denied based on pre-existing conditions?  

According to this New York Times editorial, "The biggest difference for Americans who have employer-based insurance is the security of knowing that, starting in 2014, if they lose their job and have to buy their own policy, they cannot be denied coverage or charged high rates because of pre-existing conditions. Before then, the chronically ill could gain temporary coverage from enhanced high-risk pools and chronically ill children are guaranteed coverage."  

I've always wanted to take that leap and run my own business.  I enjoy working in new media and health care, I like working hard, but what kept me from making a bold move was pure and unadulterated fear.  It was the same fear that caused me to immediately grab my diploma after college and start working at a crappy job two days after graduation, simply so I wouldn't lose my medical insurance coverage.  (I was a bank teller.  I have no math skill to speak of.  Tell me how that career choice was safe for anyone.)  As a type 1 diabetic, medical coverage takes precedence over a paycheck, seeing as how I have never had the option of purchasing a private policy.   (Something about that whole "taking insulin" thing makes insurers squeamish.  What, like taking injections ever kept me from becoming a productive member of the work force?  Yet I'm allowed to pay my taxes.) 

Sometimes, it takes a bold move to force a bolder one.  I left my job last October in pursuit of one thing:  a healthy pregnancy.  The fear that once held me back was replaced by the overwhelming desire for a healthy pregnancy, and Chris and I moved forward without hesitation.  But, of course, we had to make sure there wasn't a lapse in my insurance coverage, and with pregnancy being considered another pre-existing condition, I remained insured by COBRA.  Thankfully, once BSparl is born, we have another plan in place.  But the details of my insurance coverage aren't the focus here.  Nor will they be.

The point is now there are options for people with diabetes.  Or at least that's what I'm hoping.  I've been pouring through the newswires and seeing, over and over again, how pre-existing conditions can't be denied.  Reuters reports that  "Uninsured adults with a pre-existing conditions will be able to obtain health coverage through a new program that will expire once new insurance exchanges begin operating in 2014."  This is in addition to insurers being "barred from excluding children for coverage because of pre-existing conditions."  And I remember when I was a kid and my parents dealt with that very issue after my diabetes diagnosis.) 

Newsweek sheds a little more light on this, stating, "Insurers who offer plans on an insurance exchange will be prohibited from rejecting customers with preexisting conditions or charging them higher rates. But the exchanges won't be mandatory until 2014. In the meantime, people with preexisting conditions will be permitted to enter a 'high-risk pool,' which offers caps on premiums and out-of-pocket spending. Still, there's a catch: only people who have been without coverage for six months are eligible. The rule is designed to stop people from arbitrarily switching from their private insurance plans to the cheaper—but taxpayer subsidized—pools. But it means that people who lose their jobs can remain uninsured for a full six months." 

I don't know enough about the health care reform bill to speak eloquently about the details.  I am only exposed to what the media shows me, and what my research procures, and what pages of the bill I'm actually able to pour through and understand.  And I know that talking politics on the blog (just like talking religion) can be a very tough topic, because PWD have so many varying opinions and stances on these issues.  But I'm a person with diabetes.  And I'm hopeful.  I'm hopeful that this could be the beginning of diabetes not dictating my insurability.  I'm hopeful that people with diabetes will have the option to work in fields that inspire them, not just ones that insure them.  Diabetes has a hold on so much of what we do throughout the day and so many of our choices, and I'm hopeful that the passage of this bill will give back some options.

(Just a quick note:  I posted something on Facebook and the comments are impassioned, but respectful.  So far.  :)  If you are going to leave a comment on this post, you definitely don't have to agree with me or anyone else, just please be respectful.  Or I'll send Siah after you.)  

Posted by Kerri Sparling at 09:09 AM | Permalink | Comments (35)

I've been diabetic for over twenty years, and when I was diagnosed in 1986, my first meter was an Accu-Chek (this post has some pictures of these old diabetes meters).  The strips were large, absorptive pads that soaked up the blood drop and changed color after I wiped the blood away with a clean cotton ball.  The color strips were either stuck into the machine and read after 120 seconds, or the color pads were compared against the guide on the side of the strip bottles.

Comparing colors?  Total guessing game.  But waaaaay back in 1986, glucose meters were FDA "OK'd" to be off by a margin of 20%.   That means (if my math is right, and don't trust me that it is because I'm still a Morrone) if my meter said "100 mg/dl," I could have been anywhere between 80 mg/dl - 120 mg/dl.  For me, particularly at this stage in my life, that's "almost low" or "almost needing a correction bolus."

Wouldn't you think we've come such a long way since then?

Oh, but we haven't.  

The standards for glucose meter accuracy haven't been tightened up since before my diagnosis.  Sure, meters have gotten fancier and faster and they come in a variety of brands, colors, and sizes, but they aren't more accurate than the ones I used when my fingers were being lanced for the very first times.  (And this was proven to me when I was at the ER the other night - the nurse busted out a Lifescan meter that was older than dirt to test my blood sugar.  It was their approved hospital meter, and the results were the same on that meter as they were on my current Lifescan meter.)

Scott wrote a remarkable post about the issue of meter accuracy yesterday (click here to read it) and Kelly also hit this nail squarely on the same day (her post can be found here).  And Bennet questions what accuracy is in the first place.  And after reading their posts, I'm inclined to comment as well. 

I base EVERYTHING I do, diabetes-wise, on the information provided by my glucose meter.  I base my insulin-to-carb rations on those results, my basal rates, my food intake, and my exercise decisions on those numbers.  I calibrate my Dexcom using those numbers.  EVERYTHING.  Hell, maybe not even limited to just diabetes stuff.  I won't get into my car and put the key in the ignition if my meter shows a result that's too low, and I am reluctant to eat more than a salad at dinner if my glucose result is way too high.  

So when the numbers being provided by my meter aren't as accurate as my dedication and determination deserve?  I get a little fired up.

Over the course of my diabetes life, I know my meter has thrown some wonky results.  I'd have to ask my mom if she ever saw any crazy results, but I know since monitoring my own disease, I've seen plenty.  Over the last fifteen years or so, I've used meters from Accu-Chek, Agamatrix, and Lifescan, and in the last few years, exclusively from Lifescan, due to what my insurance covered.  And for the most part, I never second-checked any of my results, unless I really felt that they were "off" in accordance with my physical symptoms.

But since using the Dexcom, I've been double, and sometimes triple, checking results.  Take, for example, the other day when I received the following results:

Incident One:
3:56 pm  86 mg/dl
3:57 pm  159 mg/dl
3:58 pm  164 mg/dl

The only reason I double-checked that first result was because the Dexcom had me at 170 mg/dl, not 80-ish.  I know the CGM isn't for dosing or treating, but it's pretty friendly for trending and "gisting," so the discrepancy caused me to double-check the result.  And, for the record, my hands were freshly washed with soap, dried, and clean.  The lancet was new (I know - dumb luck on that one).  And I wasn't eating or exercising at the time.  So what gives?  86 and 164 are very different numbers.  That's waaaaay more than 20%.  Even I can do that math. 

Twice.

Incident Two:
5:51 pm  110 mg/dl
5:51 pm  203 mg/dl
5:51 pm  229 mg/dl

This is not the first time this sort of thing has happened - I've blogged about it before and have linked to several of those posts throughout this post.  But now, things are different.  I'm in a constant state of blood sugar panic these days, worrying that not only are these results (accurate or otherwise) affecting my health, but how are they impacting my currently-being-built baby?  Would I be double-checking these results if I wasn't pregnant?  If I wasn't worried about BSparl, would I be willing to use three test strips (aka almost $3.00) per glucose check per sitting?

The FDA recently had meetings about this very topic: glucose meter accuracy.   (CWD mom Ellen Ullman actually spoke at this meeting, representing the diabetes community.  Go Ellen!!)  And Scott had an excellent synopsis of one of the most disturbing statements made at this meeting:

Not good enough for me.  I'm expected to maintain an A1C of 6.5% (or less) throughout my pregnancy.  Diabetes complications, no matter how hard we work to advocate against the guilt, are still ascribed to the patient, not the disease.

I'm working very hard to take care of my diabetes, and to have my efforts impacted by industry apathy isn't right. 

To echo Scott's call to action, I'm urging us all, as members of this influential diabetes community, to visit www.regulations.gov and search for Docket No. FDA-2009-N-0604 to leave your comments.  Tell the FDA that 20% isn't good enough, and we deserve every chance to take the best care of ourselves.  

I don't care if my meter comes in 15 different colors and can juggle knives - it needs to be ACCURATE. 

Raise your voice.

Posted by Kerri Sparling at 09:23 AM | Permalink | Comments (46)

No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time. 

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.