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June 22, 2012

HCPs, Patients, & the Web: An Interview with Dr. Berci Mesko.

Dr. Berci Mesko.  That guy.  You know him.Berci and I 'met' online seven years ago, I think (which equals out to about four hundred in Internet years), and had the opportunity to toast in person a while back.  I've been following his progression in medicine through social media, and I'm proud to be chatting with him here on SUM today, looking forward to what's next for this socmed trailblazer.

Kerri:  You've been a strong voice for social media being part of the health care system.  What initially ignited your passion in this space?

Berci:  My answer is quite simple. I have been a geek for a long time and when I had to face the old structures of medical communication and education, I was surprised I couldn't use my well-designed online methods to solve my challenges in medicine and healthcare. So I started working on new solutions that could be implemented into healthcare. I first became active in the medical segments of Wikipedia, became and administrator there, then I found out a blog could be the best platform for my online presence so I launched Scienceroll.com. Later when I tried to find quality social media resources focusing on my fields of interests such as genetics or cardiology, I realized how desperately we need a service that curates medical social media channels for free, this is why I launched Webicina.com.

As you see, I had very clear reasons to become more and more active and to find my own solutions as a geek.

Kerri:  Why do you think it's important for health care providers to be involved in the social media space?


Berci:  It might be a surprise, but I don't think all of them have to be involved. There are a lot of patients who do not use the internet in their health management and do not require their doctors to communicate online. But as the number of e-patients is rising rapidly and as the amount of information we have to deal with is growing day by day, social media can offer great solutions for simple problems such as being up-to-date or communicating with peers.

Basically, using social media is the same as having a real life conversation only with a few exceptions therefore I think the same rules should apply for social media as for offline communication even in medicine. Be respectful, listen closely, be consistent when publishing online and always think twice as whatever content you publish online as a medical student or professional will hunt you down.

Otherwise, social media can be a huge help for physicians by using online platforms, crowdsourcing and other extremely useful features if they know exactly what they want to achieve and know the rules and limitations.

Kerri:  Where is medicine going, in a social media sense, and how can patients be more actively involved, in your opinion?

Berci:  The only thing we don't have to deal with right now is the way patients use social media. Their motivation is clear: they have a medical condition and need information. The easiest way nowadays to get information is to turn to the internet. There is no question, they will use it more and more frequently in the upcoming years.

On the other hand, this is the job and responsibility of medical professionals to become their guides when it comes to the assessment of quality information online. Physicians should be able to meet the expectations of e-patients. As Farris Timimi, MD of Mayo Clinic Center for Social Media said, this is now part of their job. Medical professionals are natural communicators and now social media is a a huge platform used for that purpose and they have to know the tricks and potential dangers. The only way to do this properly is including digital literacy in medical curriculum just like I did when launching the world's first university course focusing on social media and medicine for medical students and also when I launched the global format of this course so then every medical student in the world can get this kind of knowledge even if they don't have such a course at their medical school.

Kerri:  How does Webicina help bridge the gap between health care professionals, patients, and the web?

The mission of Webicina is to curate the medical social media resources in many platforms, from many perspectives and in many languages. Coming up with the most relevant social media channels focusing on a medical condition or specialty is extremely difficult. The process of curation consists of 3 steps: 1) crowdsourcing through our social media channels that have been built for over 5 years, 2) the Webicina Team designing a collection based on the results of the crowdsourcing, and 3) checking each resource again and providing the reasons why it was selected.

Through PeRSSonalized Medicine, our users can follow the latest updates of any social media channels dedicated to medical conditions and specialties in the simplest, customizable, multi-lingual social aggregator in which if you click on the e.g. German flag, not only the platform will be in German language, but the resources included in the database will be the best German ones. We work with international collaborators to ensure the amazing quality of these collections.

We also provided an award-winner iPhone and Android medical app with a special health 2.0 quiz. Of course, everything is for free on the site.

Then we managed to crowdsource an open access social media guide for medical professionals and pharma.

We try to help e-patients and medical professionals use social media efficiently in as many ways as possible.

Kerri:  And to cap this off on a less structured note, what are the top three social platforms you're fiddling with these days?

Berci:  I would say I'm using Google+ these days quite frequently, but regarding other new platforms, I'm not really convinced those would help me do my job better so even if I gave a try to Pinterest and others, I keep on using those communities I've been building for years to filter the information for me every day (Google+, Facebook, Twitter and Friendfeed).

*   *   *

By way of disclosure, I am on the Webicina Advisory Board.  I have no clue how to function on Pinterest.  And also, I've got legs.

January 31, 2012

What We Document.: Solving for "Why."

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.

October 17, 2011

To Palooze.

to palooze: v. the act of people with malfunctioning pancrei and their caregivers coming together for cupcakes, support, and fun

In the last few weeks, I've had the pleasure of meeting some old friends for the first time.  (That may sound like a peculiar sentence, but anyone who is part of the diabetes community and has found themselves immersed in a deep discussion about the emotional impact of this disease with an otherwise complete stranger understands the connection between PWD.) 

A few weeks ago, in Boston, I had dinner with Harry Thompson.  (He's @harrythompson on Twitter.)  Our diabetes is about the same age, and our daughters are, too.  Our spouses are supportive and amazing, and our collective appreciation for a good pun is unparalleled.  We spent a few hours exploring Boston and the North End, and we drank cappuccinos made from an old-fashioned coffee robot.  (More on that some other time, because if I try to explain it here, I'm sure to become confused again.)  But it wasn't weird ... it was comfortable, despite the fact that we hadn't met in person until that night.  Harry is awesome, in every freaking way.  (No photo, though, which I'm regretting.  We just forgot!)

And over this past weekend, I trekked into New York City with Briley and Karen to meet up with Simon and a whole pile of other PWD for what's become this strange Simponpalooza phenomenon.  It's hard to explain how and why people with diabetes forge a friendship that's instant and lifelong, despite differences.  It's harder still to explain to people why a man would want to fly halfway around the world to meet a bunch of strangers. 

But when you see photos, and read people's posts, and see videos, and take into account how much love is found in a disease that hurts so much sometimes, it makes more sense. 

I love that he has, like, a LOGO.
The "tour book," which served kind of as a yearbook for Simon's trip to NYC


Kerri, Jeff, and Briley, and Jeff OWNS this shot.  Owns it.


MOST of the group (because Kelly came running in seconds after the shutter clicked)

Kerri and Simon.  Simon says, "Look happy!"
"Simon says ... be happy!"

Actually, it makes perfect sense.

Thanks for coming to spend time with us, Simon.  And thank you to everyone who writes about the friendships found in the diabetes community.  Diabetes isn't exactly known for "giving back," but the community of people who live with it are

(More photos on Flickr here.)

September 29, 2011

Diabetes Terms of Endearment eBook!

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?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

July 14, 2011

Coco, Disney, Lilly, and Nick Jonas's ... Mom.

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.  

June 14, 2011

Joslin Medalists: How Far We've Come, and How Far We Can Go.

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. 

The amazing Joslin medalists (and some of the Joslin team)
Photo credit to the Joslin team

I sat in this room, listening intently, and thinking about my own life.  I've had diabetes for 24 years.  Long enough to appreciate where I've come from and what I've accomplished, and yet still a "rookie" in the eyes of these medalists. 

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."

Me and my fellow Clara Barton Camp alumni, Jane.  YOU ROCK, JANE!!!
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.]

February 07, 2011

Postsecret.


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?). 

November 29, 2010

Late: Special Sib of a D-Kid Day.

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.

Special Sib of a D-Kid Day!  (Was yesterday.  Sorry for being late!)

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.

November 24, 2010

Feeling Thankful.

Tomorrow is Thanksgiving here in the States, and I'm feeling pretty thankful.  While tomorrow is reserved for turning hand tracings into turkeys, today is a good day to highlight what I'm thankful for this year:

I'm thankful that we have a backyard that the cats can go crap in, because I was tired of cleaning that litterbox.  (And I'm also secretly glad that our neighbors have a ridiculous cat that comes over and starts trouble with ours, because when they pile into the bushes out back and cause the shrubbery to vibrate with their Andy Capp-style battles, it cracks me right up.)

I'm thankful for our family and friends, who have helped Chris and I adjust to our new lives as 'parents' and who make "home" a place that matters.  We're so glad to be sharing this chapter of our lives with the people and in the places we love the most.

I'm thankful for having good enough health to take it for granted, and to actually have the luxury of feeling frustrated when I'm "sick" because it's such a foreign concept.

I'm thankful for the wonderful work opportunities that have come up in the last few years, specifically for the companies and organizations that have embraced the voices of patient advocacy and who have decided to become part of the conversation.  

I'm thankful I have an insulin pump and a continuous glucose monitor that can help me make sense of the holiday meals.  Also known as:  Pie?  Yes, please.

I'm thankful that the lady across the street doesn't judge me when I wander in the front yard to check the mail, clad in workout clothes, slippers, a sloppy ponytail, usually with the baby strapped to the front of me a la Bjorn, my cell phone secured to one ear, pump tubing swinging in the breeze, and an army of cats weaving in and out between the maple trees.  She must think I'm a work-from-home crackhead.

I'm thankful that the Internet has brought a group of fellow PWDs into my life, and that I'm healthier and more informed as a result.  To boot:  I've made some very close friends through these bloggy blogs, and I'm grateful for their friendship every day.  Life is good when you're surrounded by those who don't make their own insulin. (And let's not forget that I'm also thankful for Abby the Person, who already rocks.)

I'm thankful for my husband, who is my best friend, my partner in parenting, my editor, and remains my hero.  And I'm thankful for my healthy and extremely happy baby bird, who wakes up every day with a smile, and helps me to do the same.  I didn't realize how much I missed her until she arrived.

And with that, I'm thankful for video:

November 01, 2010

First Walk.

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:

Kid cracks me up.

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.

October 13, 2010

Interview with a Fellow New Mommy: Kim Lyons.

According to her website, Kim Lyons' goal is to "help the world become a healthier place ... physically, mentally, and emotionally."  I can subscribe to that.  Trainer from the Biggest Loser and national fitness guru, Kim gave birth to her son, Jake, about four months ago.  And I can attest to the fact that the girl has gotten herself back into shape right quick - I met up with her at the TCOYD conference in Providence a few weeks ago and she looks like she bounced right back.

Kim agreed to chat with me about fitness, pregnancy weight gain, and coming back from the post-partum body changes.  (And now I feel even more inspired to get my rear end in gear!)

*   *   *

Kerri:  As a prominent figure in the fitness world, how did you deal with the weight gain of pregnancy, both physically and emotionally?

Kim, pregnant.Kim Lyons:  As a trainer, I have a simple straight forward approach, No Excuses, period. I have heard them all, too tired, not enough time, this or that hurts, no money, etc. Bottom line, I will find time in your schedule, I will energize you with exercise, I will work around injuries, and I will give you thousands of exercise you can do for free with out a gym! I simply do not entertain any excuses.

When I found out I was pregnant, I was so excited. It not only explained my odd cravings and complete zombie state of mind but it explained my “less then aggressive” workouts. I’ve spent 15 years learning to listen to my body and for weeks my body had been screaming “slow down”. There really was no pushing through. I’ve been tired for workouts many times before and managed to still get in an intense workout. This was different and as soon as I saw the results on that little white stick it became so clear.

I never thought of pregnancy as a challenge. It was going to be simple, I’d just go about my normal routine and I’d have a little basketball belly.  All of the sudden, my hormones were a bit off (I cried about folding laundry), the scale went nuts (I gained 10lbs, not 3lb, in the first trimester), and the comfort level of my bed took on a whole new meaning! I quickly realized that, more then ever, I was going to have to crack down with my own motto and make a no excuse plan for myself.

That plan included mentally accepting the massive changes that were going on in my body and coming up with an exercise and nutrition game plan! My workouts needed to be short, effective, and accommodate for the changes in my body. My nutrition was no longer about maintaining a six pack, instead, it was about supporting the little life inside me. My little bionic body was no longer selfishly mine to beat up with daily workouts and a strict low calorie diet!

I truly thought it was going to be easy, but the truth is, there were many times when I looked in the mirror and cried. I felt so guilty for being so vain about my six pack, perfectly sculpted arms, and tight little buns. I have spent the last 15 years of my life studying the human body and how to get anyone, big or small, into top shape. For the fist time in my life, I was faced with a new challenges, I wasn’t in 100% control of my body. It wasn’t all about me anymore!

My vision of just gaining a little basketball belly was replaced by the mirror image of my arms smoothing out, my hips widening, and my boobs taking on a life of their own! The closet became my worst nightmare!
The good news is that as I settled into the pregnancy, I took on a new frame of mind. I decided to really embrace the daily changes going on in my body and follow my own no excuse approach. This workout includes a few of my favorite moves to help you keep your body in shape during your pregnancy, prepare your muscles for lifting and carrying your new little baby, and having a great and healthy body in the years to follow.
Most challenging…

The most challenging part of exercising while I was pregnant was the extra weight and the lack of flexibility in my mid section. Everything became awkward and difficult, even simple daily movements. Reaching down to pick something up no longer was a simple thoughtless movement, instead I had to think, wide squat-like stance, toes out, not to fast, sit back in the heals, and keep the abs tight as possible to support the back.
I gained 30 lbs during my pregnancy and I felt everyone of them as I walked up and down the two flights of stairs in my house. Walking became great exercise where before I never huffed or puffed or broke a sweat on a daily walk.

Most enjoyable part was that during my pregnancy I took the time to stop and smell more roses! Literally!! Usually I exercise with such focus and intensity that I don’t take time to slow down and smell the flowers. While I was pregnant I went on walks with friends, spent quite days in my home doing these exercises between errands and emails, and even worked out at the same level as some of my beginner clients. Once I set my mind to except slowing down, I really enjoyed it!
 
Kerri:  Babies are a lot of work, and taking care of them takes up a good chunk of our days.  As a Kim Lyons and her little kidlet, Jakenew mom, did you find it difficult to work in working out into your schedule?  What helped you get back into shape so quickly?

Kim Lyons:  I do find it challenging, new moms don’t have much time for themselves and when there is some down time sleep and other “to-do’s” tend to fill the time. However, at the end of the day we make time for the things that are most important and that is exactly what I had to do. I allowed myself to be flexible with when I got in my workouts, but I didn’t allow myself to skip them. I began slowly with 30 mins min exercise a day. Some days I was able to get in a bit more. I think a lot of women feel guilty asking someone to help out while they go work out, but it’s so important for mom’s to make time to exercise. It cannot only help with self esteem, but it can also help women avoid post partum depression.

Of course being in the public eye and returning back to work about a month after having Jake was a huge incentive! I have had so many women over the years say “wait until you have kids” or “you obviously don’t have kids” and I wanted to prove to everyone that you can do it. I had someone say that to me at a conference not long ago and I was so happy to say, “Actually, I have a 3 month old baby.”  Her face was priceless. It’s not easy, but I don’t except excuses from my clients and I sure the heck wasn’t going to allow myself to make excuses!
 
Kerri:  My husband and I are excited to make playing and running around a part of our daughter's upbringing.  How do you plan to instill the values of physical fitness and regular exercise into the life of your child?


Kim Lyons:  I want Jake to see exercise as fun. I grew up playing outside, climbing trees, playing tag, and playing sports. Now it seems kids just sit around and watch TV, sit on the computer, or play video games. Our food is getting worse and our kids are becoming less active. I don’t care if Jake is a super athlete, but I’m going to make sure he finds something active that he loves. I’ll expose him to martial arts, gymnastics, soccer, football, baseball, and anything else he wants to “play”! We’ll spend weekends and free time riding bikes and going for hikes instead of sitting around eating fast food!! Kids learn everything from the examples their parents set!
 
Kerri:  What advice do you have for someone who is looking to achieve a new level of fitness?  Any inspirational tips or suggestions on how to make fitness a priority?

Kim Lyons:  Achieving a new level of fitness requires total commitment and consistency. It’s important to find things that you enjoy whether it’s in a gym or not. It’s also important to have a support system. Find friends to help hold you accountable, put dates on the calendar, and set goals!
 
Kerri:  You work closely with the diabetes community, with appearances at the TCOYD conferences and other diabetes outreach events.  What made you get involved in the diabetes community?


Kim Lyons:  While working on The Biggest Loser I saw the impact that exercise and proper nutrition can have on people with diabetes. However, most people that have diabetes or are pre diabetic go to the doctor not to a trainer! Don’t get me wrong, they need to go to the doctor, but it is a trainer that can help get these people moving and eating properly. I saw a huge need for some help in the diabetic community and I have really embraced them. I am so passionate about helping people live healthier, happier lives.
 
Kerri:  What kind of difference are you looking to make in this community?


Kim Lyons:  I want people to see that diabetes is not the end of the world! With proper exercise and nutrition it is totally manageable. My goal is to help educate people about the common complications of diabetes, primarily pDPN [diabetic nerve pain].  pDPN can be very painful and many people give up on exercising. However there are so many ways to treat pDPN and exercises that they can do. I’m involved with the “Take the Next Step” campaign and travel around showing people these exercises.  You can also see them on line and read all about pDPN at www.diabetespainhelp.com
 
Kerri:  Through your experiences with the diabetes community, have you learned anything about this disease that surprised you or changed your previous perceptions?

Kim Lyons:  It surprises me how many people with diabetes don’t take care of themselves. We only get one body and one life and I just want to help people learn how to manage there diabetes and get back to doing things they love. There is so much information out there, it can be overwhelming, but at the end of the day if they take one step in the right direction it could save their lives.

Kerri:  Any other thoughts you'd like to add?

Kim Lyons:  I have an incredible on line training website that embraces all elements of living a healthier lifestyle. We help everyone from all over the world and have an incredibly support group of trainers, challenges, retreats, prizes, live chats, and a daily video blog from me! It’s really fun and amazing to see how much people love it and are achieving incredible results. The site is www.FastTrackToFatloss.com

*   *   *

Thanks, Kim, for both the information and the inspiration.  And your kid is a cutie - does he like older women?  Like almost six month olds

October 01, 2010

Joining the Gym.

We moved at the very end of August, and when we left our apartment, we also left behind our gym.  Lovely, right-there-in-the-building gym that was easy to get to because it didn't require getting into the car and trekking across town.  I worked out for the majority of my pregnancy, thanks to this gym, and only stopped when pre-eclampsia started to make my body its home.

Yesterday morning, I weighed myself and saw that I'm back to my pre-pregnancy weight, numbers-wise.

"Whaaaa?"  I said, looking into the mirror and assessing the various areas of squish.  "This is not how I looked before that little biscuit of a BSparl arrived."

Weight, for me, has never been a numbers game.  I've never cared in the least about what winks back at me from the scale, but more how my clothes actually fit.  Over the years, my weight has fluctuated due to muscle mass, stress, season (summer = ice cream), and work schedules, but overall, I've remained the same general size.  

But when BSparl came into town?  (And by town I mean "uterus.")  Chaos.  My body has taken on shapes I have never seen before.  Contents definitely shifted during landing, and I'm looking at a whole new me when I see myself in the mirror.  And honestly, I'm not the biggest fan of what I see. 

Some things, I'm fine with.  Like the scar from the c-section.  It's a sizable sucker, but it's proof positive that my baby came from my body, and I'm reminded of that every time I see her.  Some women call it a badge of honor.  I'll take that.  The stretch marks?  I'm less snuggly with those, but every week they fade a little more and every week I notice them a little less. (And Palmer's cocoa butter helps.)

Other changes in my body can be filed under "changeable," and now that BSparl is five months old, we've moved, and my travel schedule is about to lighten up over the holidays, I'm fixin' (nod to NBF) to get myself back into shape. 

So last night, I joined a gym.  And I worked out for the first time since we moved into our house.  Granted, it wasn't the most aggressive of workouts, but I was there.  I spent 45 minutes on the cardio circuit, and even though my weight didn't shift even a smidge, I felt worlds better when I left.  Like I wasn't just sitting at home, wishing I was making a change.  There I was - making it.

At the end of December, I'll be in Marco Island with my family and my extended CWD family (including my daughter's favorite spit up target, Mr. Scott Johnson), and I want to feel good about how I look when I'm there.  I have three months to reign things in, and I know that - for me - with exercise comes better diabetes control. 

Hear that, Larry?  You thought you shook me off for the last few months?  Pfffft.  I'm comin' for you.

Shhhh!  Larry is always watching.

September 10, 2010

24 Years.

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.

24 years with diabetes

September 06, 2010

Diabetes Art Day: What If You Missed It?

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!

August 24, 2010

What is the Best Motivator?

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.

Give me hope any day.

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.

July 13, 2010

Clara Barton Camp.

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! 

The awesome staff members at Clara Barton Camp.

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!)

March 02, 2010

Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?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.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

February 04, 2010

What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

December 06, 2009

Looking Back: The Boy at the Health Fair.

Today, I'm revisiting a post from 2006 (writing that makes me realize I've been blogging for a while now!), when I met a little boy at a Rhode Island JDRF event who warmed my heart - which I needed on this snowy, New England morning. ;)

*   *   *

I'd guess about ten years old.  Spikey blonde hair, pale blue eyes, chubby little kid face.

His mother stopped by the table we were manning at the School Health Fair, mussing with the pamphlets strewn about the blue plastic tablecloth.  The tri-fold cardboard display announced "Juvenile Diabetes Research Foundation" in bright blue letters.  Myself and another volunteer from the RI JDRF stood vigil at the table, handing out trinkets and informational packets, answering questions, and enjoying the sights.

"Hey buddy.  Would you like a t-shirt?"  My fellow volunteer leaned in towards the little blonde boy.

"Sure.  Thanks."  Shy blue eyes.

Turning to the mother, my partner asked, "Does anyone in your family have diabetes?"

She waved a green sweatshirt clad sleeve at her son.  "Yeah!  He does!  He has diabetes."

He looked at the floor and contemplated his untied sneaker. 

His mother laughed loudly and clapped him on the back.  "Some days he talks about it and some days he doesn't.  Today he just ain't talking!"  She picked up an issue of Countdown Magazine and flipped through the pages.Lost in the Crowd

"Here's your t-shirt."  Pale blue eyes met my own.  "I have diabetes, too, you know."

"Really?"

"Yeah.  I have an insulin pump."  I pointed to the pump clipped inside the pocket of my khaki skirt.  "I've had diabetes since I was about six."

"I've had it since I was seven."  He smiled and fingered the plastic sleeve around the blue JDRF bracelet.  "It's okay... so you have it, too."  He looked at all the other volunteers at the other booths. 

After a beat:  " You look just like the rest of them."

I stood there after he and his mother walked away, toting plastic bags filled with health fair goodies and JDRF magnets and pamphlets on bloodsugar management.   His blonde head blended in with those of the other kids until I couldn't find him in the crowd anymore.

He looked just like the rest of them.

November 09, 2009

Two Heartbeats on D-Blog Day.

Diabetes Blog Day, 2009.  Holla ... and whatnot.The first time we saw him (or her), it was at the emergency room back in Connecticut.  We were only seven weeks into the pregnancy and barely had caught our breath from finding out when the bleeding happened and I panicked.  We spent five hours in the emergency room, poked and prodded and with an IV line at the ready, only to finally be wheeled into the ultrasound room. 

"Just relax, Mrs. Sparling.  And we'll take a look and see if everything is okay."

And the screen switched on and Chris and I saw our baby's heartbeat, strong and steady and fast, beating inside of me.  Everything changed forever, even though nothing had changed yet.

The bleeding stopped that day, and we moved forward, cautiously, frightened, and so hopeful.  A few weeks later, my mother and I (Chris was in LA on business) were at my Joslin appointment for the first "official" ultrasound, hoping to see the baby growing strong and steadily.

"Oh, there it is.  There's your baby.  Those parts there at the end?  The feet.  Those are the little feet, ready to kick."

And I watched as the teeny, hamster-looking creature inside of me kicked his little feet.  So small.  So ... surreal.  I couldn't wait to see him again.

Two weeks ago, Chris and I were at the Joslin Clinic for the first of a few second trimester ultrasounds, and from what my eight months pregnant best friend had already told me, this ultrasound was very different than the first one.  "It looks like an actual baby at that point," she said, her blue eyes wide.

Chris and I talked with Dr. T, the OB/GYN, for a while about how I've been feeling, my numbers, and overall how the pregnancy is progressing.

"I feel good.  Tired a lot, and doing a bit more traveling than I'm used to these days, but I'm feeling better now that I'm in the second trimester and past that fall-down exhausted bit from the first couple months."

"Good, sounds like you're doing great.  So ... wanna see the baby?"

"Yes!"

I hopped up on the examining table and Chris took a seat by the ultrasound monitor as Dr. T. moved in with the external ultrasound wand.  "A little bit of this warm gel right on your belly and ... okay, there we go!"

On the screen was a baby.  A whole baby, all big-headed and waving arms and kicking legs.  Our baby.  Hands with fingers, legs with knees.  This baby looked like a real baby.

"Oh my God, is that him?  He's so big!"  I couldn't believe this was the same little hamster from just a month or so ago.  He took up the entire space of my uterus, which was a big change from all the room he appeared to have a month ago.  Now he looked like he was out of room in there (and I knew that meant my own expansion was coming fast).

"Yes, that's the baby.  Calling him a 'him,' are you?  We'll find that out next month, right?"

I watched as the baby turned and squirmed, raising his arms up and his body lurching just a little bit every few seconds. 

"Dr. T, does he have the hiccups in there?"

She looked closely and smiled.  "Yes, that looks rhythmic and steady.  Looks like hiccups to me.  Would you like to hear the heartbeat?"

She turned a knob on the ultrasound machine and suddenly the room was filled with a steady whump whump whump sound - the sound of our child's heartbeat.  It was incredible, hearing my own heart thudding in my ears with excitement as my baby fluttered along inside of me.  Chris held my hand as I brought the other one up to my eyes to catch the tears that collected there.

Two heartbeats, both inside of me.  

And today, on D-Blog Day, I wanted to share this story with you guys.  You have been with me from when Chris and I first moved in together, back when the dream of a heartbeat other than my own was something I only hoped to one day hear.  Now, every day that passes brings BSparl closer and closer to meeting his mom and dad.

When I was diagnosed, they said that children would be near impossible for me.  And while I know that nothing is certain until that baby is in my arms, I am already so proud of where we've come, as a Sparling family and as an even larger diabetes community.  We have hope now, hope for lives that are wonderful and meaningful, despite diabetes.  Diabetes is a heavy load to carry, but with the support we get from this community, the burden is so much lighter.

Happy D-Blog Day, you guys.  And thanks for being part of my extended family.

October 14, 2009

Dear Baby.

Dear Baby,

I've been thinking about you for a long time.

My doctors told me it would be a challenge to have you.  They said that diabetes would be a tricky hurdle as I planned for you.  They said you might not happen.  There were so many reasons to be scared and so many reasons to doubt, but I never gave up on you, Baby.  I have always wanted you and have worked so tirelessly to make my body safe for you.

And at the end of August, at the Joslin Pregnancy Clinic appointment several weeks ago, I thought you could possibly be there.  I thought there was a chance, because your dad and I were ready to try for you, so we took that leap.

"It's so early, so the test might not show a positive result, but we should do one anyway.  But remember, it might not be positive because you wouldn't be very far along."  The CDE gave me a warm smile while the nurse went to test the sample.

Your dad went into the waiting room to sit.  We didn't know how long it would take to get the results back.  And while I was waiting, the CDE and I were talking in the hallway about how great it would be if you really were there.

Then the nurse opened the door of the lab and came out with the test in her hand.

"Oh, she's definitely pregnant.  Look!"

I'm pregnant!!!

And I saw two lines.  And the CDE began to cry.  And then the nurse began to tear up.  I cried, too, because I was so scared and humbled and in love with you already.

"Chris, Chris!"  Even though we were in a waiting room with people who were there for their own appointments, the world sort of stopped for a minute so we could have our moment.

Chris heard the commotion from the waiting room, and came over, his eyes shining.  And Baby, I wish I told him about you with even a scrap of grace.  That I'd whispered, "We're pregnant!" or "We're having a baby!" or even, "Oh my God!" 

"It's on!" is what I said.

Super classy.

We hugged.  And we kissed.  And the family in the waiting room burst into a quiet applause.

There have been many weeks that have passed, and they haven't been the smoothest.  There have been some very scary moments, and I'm still scared to be writing this all down.  There have been so many doctor's appointments since that day.  Thankfully, everything seems to be just fine and on track, and my diabetes is under the best control I've ever achieved.  (Last A1C, taken Friday, was 6.2%!)  You are growing fast, and we've slowly told our friends and family about you.  Everyone is very excited, and I'm working really hard to make sure that we both remain safe.  You're coming next spring  and we couldn't be happier.  Being your mom is the most important job I will ever have, and I'm ready.  

When I looked in the mirror this morning, I saw the rounded baby bump and felt such a surge of happiness.  I don't know if I'll be the best mom, or the most "together" one, or even if I'll be one who has any clue what she's doing.  But I'm so excited for you to arrive, even though I am scared and careful and preparing as best I can. 

You are so wanted.

Baby, I can't wait to meet you.  I've always wanted to be your mommy.  And in just under six months, I'll be able to hold you in my arms instead of just in my heart.

I love you so much.  And now everyone knows.

Love,
Your Mommy

September 29, 2009

Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

August 03, 2009

A Diabetes To-Do List.

I stood there with my best friend as she rubbed her pregnant belly.  The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.

And I felt oddly self-conscious with my lack of roundness.

Last Friday was my first official appointment at the Joslin pregnancy clinic.  It's located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point.  I'm not pregnant, and we aren't trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health. 

Sigh.  This all sounds redundant, even to me.  I've talked the Big Talk before.  "Oooh, look at me!  I'm going to really wrangle in my numbers and have an A1C you can bounce a quarter off!"  And I'm all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in.  Like work.  And stress.  And getting to the gym.  And social stuff, like hanging out with my friends and going to RI on weekends.  Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust.  My workload piles up.  And my stress levels skyrocket.

I'm so frustrated because I want to have a career.  And I want to have a baby.  (I'd also love some tight control of my diabetes, too.)  These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself.  Slacking off is easy, and frustrating, and not healthy for me or any baby I'd like to have.   

But I also realize this is one of my biggest hurdles when it comes to pregancy planning - the whole "sticking with the pre-program."  This becomes more and more obvious to me when I go back and re-read old blog posts where I'm so excited to get back into better control, only to be derailed by those Other Things.  So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.

"I need help being held accountable."  

They didn't quite hear me at first.  "We can do some tweaking, and in a month or two, we can revisit your A1C and see if it's lower and then we can give you the green light for pregnancy."

I knew I needed more than that.  I had to be completely honest. 

"Guys, I really need to be held accountable.  I know this sounds crazy and I seem very compliant, but I have trouble following through.  I'm great out of the gate, but I lose steam after a few weeks and I'm at the point where it isn't good enough anymore.  I'm out of excuses.  And I'd really like to join the ranks of those pretty pregnant ladies out there.  Please help me?"

And they listened.  We spent the rest of the day working out a plan for me.  One that will actually make a difference.  One that will get me there.

I'll be in Boston every three weeks until I'm pregnant.  This is a huge commitment but I need to make diabetes a priority without fail.  I want this.  I want to succeed at this more than anything else.  I'll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together.  Chris is in charge of my meals, in that he'll be helping me plan my day, food-wise, and he'll be counting carbs and measuring things for me. I'll be eating relatively similar items every day so I can manage the trends and control them.  I'll continue to test all the live long day and wear the pump and the CGM, but I'll actually use these devices to their fullest potential, instead of just going through the motions. 

With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints.  Being sent out for three or four months is too much for me.  Obviously, because I burn out well before my follow-up appointments.  I just plain can't pay rapt attention for that long.  But three weeks?  Can I do that?

I have to do that. 

I will do that. 

It's a long way down from here.

July 29, 2009

PatientBloggers at BlogHer09.

The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone.  Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.

Fast-forward to July 2009, when the PatientBlogging panel debuts at BlogHer, with Jenni Prokopy, Loolwa Kazoom, Casey Mullins, and me on deck as panelists, with Mr. Lady as our moderator.

I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues.  But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.

(It helped that my fellow medbloggers Rachel, Lee Ann, and Kim were right there in the front row.  Familiar faces ease nerves!) 

The PatientBlogger panel at BlogHer.  More on this photo later.  Sorry I'm not smiling.  :)
The PatientBlogging Panel at BlogHer '09.  For some reason, I'm not smiling.  But I was v. happy.

Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases.  Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me.  I'm also married, but that doesn't mean I'm only someone's wife.  There are many, many parts to the whole.  Diabetes is just a part of me."

We talked about what it was like to connect with people who "get it."  About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.  

"Big, fat disclaimer, guys."  I kept repeating myself, when asked how we deal with people thinking we're offering medical advice.  "It's not medical advice.  We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”

Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved.  As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.   

It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions.  But it was intimate.  Comfortable.  We, as a group, were protected within that room.  People spoke their minds, and let themselves cry, without fear.

So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room.  "I look like I have cancer, but I don't."  Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.

"No one has seen me without this, except my husband and my children."  She was crying, along with almost everyone else in the room who was watching her in awe.  "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want.  It will do wonderous things for you."   

Sometimes it's hard for us to blog about our diseases.  It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness.  Sometimes readers lash out and attack us for our opinions or our care regimen.  Sometimes we are forced to have thicker skin than we'd like.

But sometimes blogging about our conditions is what gets us through the day.  Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today."  Sometimes it's the comments from people who really understand what it's like to live with these diseases.  And sometimes it's simply knowing we aren't alone.  And that we never have been alone.

And now, with the support and love of our communities, we never will be alone again.

Patient blogging ... that's some powerful stuff.  This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.

July 27, 2009

Wait, You Wanted Pictures??

Wait, what's that?  You want to see pictures?  Oh hell yes I have pictures.

This event offered more than interaction with a seemingly open-minded Pharma company.  This event gave me the opportunity to meet and reunite with some of my favorite bloggers in the diabetes space.

Here's the standard shot that the crew at Roche took of all of us.  We look downright jolly.

Jolly bloggers

The night before our meetings with Roche, we went down to the hotel bar and hung out for a few hours (before getting kicked out, sort of, and ending up in Christel's room until the wee hours of the morning and being harassed by "Tim," who has been explained in several wrap-up posts from other bloggers).  

Here are three very special members of my diabetes family, even though this was my first time meeting Scott in person:

We are family.
 
But, of course, every family photo session has it's awkward moments where the big guy tries to toss the tiny blond in the air.  The Ninja and the me could only laugh and end up captured in awkward, eyes-closed grinniness:

Christi gets tossed.

There are plenty of wonderful people I finally connected with, but without formal photographic evidence.  Like Will from Life After DX, who I've been reading for years and am always inspired by.  And Bernard (spelled Bernard) from The Diabetes Technology Blog, who I should have met years ago but until this past week, had never had a chance to hug in person.  I had the honor of meeting Crystal (aka CalPumper), Christopher Thomas, Chris Bishop, Ginger Viera, and Brandy Barnes for the first time, too.  And there were also the several bloggers who I have had the pleasure of meeting before, like Fran, Amy, Manny, Christel, Scott Strumllo, LeeAnn, SuperG, Scott King, Kelly, Jeff, Gina, Riva, Kelly Close, Allison, and Bennet.

Also, my old friend Sandra Miller was in attendence, representing with Bennet Dunlap (again, I know!) and Jeff Hitchcock as the parents of children with diabetes.  David from Diabetes Daily was also there, on behalf of his wife Elizabeth (who is type 1).  Charlie Cherry and David Mendosa represented for the type 2 crew, and Kitty Castelinni stood as one of the few recipients of a pancreas transplant.

So we all met up. 

And goofed off.

A potluck of bloggers ... and this isn't even everyone.

Including Bennet showing off his fabulous pink camera (ooooh!), a late-night packy run, Kelly sharing stories from her diabetes past that made me want to give her a huge hug, a Blair Witch moment and, of course, Christel throwing down to "Tim," a random caller who was intent upon snuggling with Mr. Diabetic Rockstar.  Needless to say, all 4'11" of Christi kept Tim from making any fast moves, and to say that Christopher owes her big time is a gross understatement.  ;)

(Sidenote:  David, I still think it was you who called from the bathroom, but the world may never know the real truth.)

It was a true potluck of diabetes bloggers, representing from all sorts of different demographics.  Unfortunately, there were several bloggers who were missing from this group, and I'm hoping - no, damnit, I'm demanding - that there is an invitation sent to more members of our influential blogging family for any future meet-ups.

These people are my friends.  They're the people who understand what living with diabetes is really like, and they are the external support network I have been hoping for since my diabetes diagnosis in 1986.  So thank you to Roche for giving me the opportunity to say hello to, and hug warmly, the people in this community that I cannot wait to see again.

More of my photos are in Flickr, and there's also a D-Blogger Summit photo pool where you can grab the best of the shots!   

July 02, 2009

One Lump or Two?

Like I wrote a few weeks ago, "Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile." 

But on the flip side of that, there are some diabetes-related things that make me grimace.  (Not Grimace, but grimace.)  And when I'm feeling down about the hard parts of managing this disease, I often turn to humor to lift me back up.  (For me, a little gallows humor goes a long way in keeping me from really falling into a depressive state.  It seems like a counterproductive idea, but it really helps me.)

This is where Haidee Soule Merritt's book comes in:  One Lump or Two?  Her book more than resonated for a 20+ year diabetes veteran like myself.  It's taken me a long time to build up this much amusement at a disease that's trying its hardest to take me out, but now I'm in the thick of the smirking-despite-the-chaos.  

As I read through her book, I laughed.  I laughed and nodded my head in agreement, thinking, "Oh hell yes, I hate those geyser fingerpricks."

How many times has this happened to you??
Who hasn't this happened to?  (Image credit:  Haidee Soule Merritt)
 
I snicked despite trying to be classy when I saw the one about low blood sugars after sex.  (Trust me, not fun.  And also, awkward as hell.)  

Low blood sugar after sex.  Oy.
Been there.  Done that. (Image credit:  Haidee Soule Merritt)

Diabetes isn't easy.  Neither is laughing at it.  But laughter, finding something that alleviates some of the anxiety and fear that comes with a chronic illness, can make such a huge difference in health.

If you want to order your own copy of Haidee's book, visit her website (and enjoy the duck sounds on the buttons, because they quacked me up).  As you thumb through your copy of One Lump or Two?, you'll find yourself smirking with understanding, too.    

July 01, 2009

Between Dinner and a Movie.

Saturday nights when we were very small were the best. 

We made blanket forts and used every damn cushion in the couch.  Laying pillows on the floor, we'd jump from down-filled island to island, pretending that the carpet was infested with alligators and only by balancing on the pillows would we be safe.

The babysitter always promised to make healthy dinner, but usually we ate popcorn, chicken fingers, and drank diet soda by the bottle, filling the glasses to the very brim and frantically slurping the carbonated foam awayI loved this doll.  I even pretended she had diabetes.  Which is a bit odd. before it could spill over.

My favorite babysitters were the ones who played with us, not just sat there and talked with their boyfriends on the phone.  Carolyn was my favorite one of all and I named my Cabbage Patch doll after her that year.  She was pretty and smart and the characters she pretended to be were so clever.  She was the perfect example, to me at seven years old, of what a 'hero' really was.

My parents had a standing Saturday night "date night," and they would go out to dinner either alone or with some friends, then maybe to a movie.  Usually they left when it was still light out, while we were still outside playing in the yard or just coming in to have a snack.  My brother and sister and I played and fought and made messes and told stories and generally destroyed the house, like little kids do.

Only now, when my memory is jogged, do I remember the headlights pulling back in the driveway, between when dinner ended and the movie began. 

Dad would wait in the car while Mom ran in quickly to test me and give me my bedtime insulin injection.  Then she'd say goodnight to all of us and run back out to the car to continue "date night."

Only now do I remember those moments and wish I'd named "Carolyn" after my mother, instead.

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

June 18, 2009

Working On Working Out.

Way overdue on a new vlog post, but I was inspired by George's post yesterday about getting back on track with exercise.  So here's my vlog post about diabetes, working out, and what motivates me to move.

Some of my reasons are a little goofy, but I think whatever gets me to exercise is well worth laughing at myself a little bit.  What gets you to break a sweat?

June 15, 2009

Old School Diabetes: Diagnosis.

I saw my niece over the weekend.  She just turned seven.  She had a bit of a fever and wasn't feeling very well, so when I saw her snuggled up on the couch under a blanket, she looked every bit the little kid she is.  Poor little peanut, hiding out until she felt better.

I remembered that I was about her age when I was diagnosed.

I found an old school photo from second grade, with me sitting next to my friend Bobby (who I still talk to, which is a very surreal experience, hanging out with someone I've known longer than I've known insulin injections).  I was diagnosed in September, right as second grade started.

Second grade, 1986.
I'm in the blue dress, second row from the bottom, third from the left.
Swinging my feet.  Not much for sitting still, even in second grade.

Over the last few days, I've been reading some emails from the CWD parents as they gear up for the Friends for Life conference in Orlando in a few weeks.  These emails are sent out to a whole mailing list of attendees, and somehow I ended up on the list with all the parents.  (Or maybe the list just happens to be mostly parents and I just happen to be an adult "kid" with diabetes.)  These parents are comparing notes and reaching out to one another, looking forward to other parents who understand what they're going through every day as they care for their kid with diabetes.

And I wish that my mother had this kind of support when she was dealing with my diagnosis over twenty years ago.  My mom had a lackluster team of doctors at the Rhode Island Hospital (where I went for a few months before going to Joslin) and Eleanor (the only other mother of a diabetic kid that we knew of in our town and the woman who just happens to be my local Dexcom rep), leaving her with little to manage the enormous learning curve.

This weekend, I went on a bike ride with my sister-in-law, my father-in-law, and my husband.  I had to remember to test beforehand, bring my meter, stash some glucose sources on several people, and monitor as re rode.  A lot of thought for maybe an hour long bike ride.  And it made me wonder what kind of preparation and worry my mother went through when she sent me out to play for a whole Saturday afternoon.  Lot of work on my mom's part just to keep things normal. 

I forget this sometimes, how many people are really involved in keeping me healthy. 

I need to call my mom. 

(Granted, my diabetes diagnosis hasn't kept me from doing much at all.  And it definitely didn't keep me from being ... um, a bit of a goofball.)

June 01, 2009

Focus: The Diabetes Things I Like.

Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile:

  • I like when I change the battery and the insulin reservoir at the same time.  Having my Medtronic 522 "full" on both sides makes me happy.
  • I like when the carb count on something is exactly 10 grams of carbs because it matches my insulin to carb ration precisely.  One snack, one unit, one oddly happy Kerri.
  • I like the sound of the pump counting up a bolus.  Boop boop beep!
  • I like when the sound of the bolus is caught by Chris and he ends up whistling it back to me, almost without thinking.  It's a little soundtrack snippet of our life.  
  • I like when the cats wait patiently for me to remove the pump tubing from my body before they lunge for it.
  • I like when new boxes of diabetes supplies show up and I can organize them in my little OCD supply closet.
  • I like when the number on my meter is two digits, but higher than 89 mg/dl.  It's a tight range, I'm not usually in it, but it brings me weird joy.
  • I like when the Dexcom beeps and my coworker (who works a wall away from me) IMs me quietly to check, "Low?" because she's ready to get juice if necessary.
  • I like not having to wear a watch. Diabetes simple pleasures.  Damnit.
  • I like when I get to dump all the used test strips that have piled up throughout the day.  Knowing I've tested a bunch makes me feel like I really stayed tuned in.
  • I like the smell of white glucose tabs.
  • I like when the new infusion set doesn't sting at all.
  • I like having someone in my life who is willing to get their hands covered in SkinTac in an attempt to stick a Dexcom sensor to random places on my body.
  • I like that the hope of the parents of kids with diabetes rubs off on me, and makes me feel good for even just a few minutes.
  • I like that diabetes gives two people, who wouldn't otherwise have a thing to say to one another, a whole dinner's worth of conversation.
  • I like having coworkers who understand but don't push.
  • I like when my best friend clinks her beer to mine and says, "Bolus, baby."
  • I like when the cat licks my hand after I test.
  • I like "free shower:"  a shower without a pump site or a CGM sensor attached.
  • I like having a whole network of people who understand - and do not judge - my diabetes life.
I like when I can focus on the silly, simple things when I feel a little overwhelmed by the tough stuff. 

May 13, 2009

Guest Listener.

I boarded the train in Connecticut and from the time I found Karen (of Bitter-Sweet fame), I was downing Dex4 liquid things, glucose tabs, and Smarties constantly.  The Dexcom kept BEEEEEEP!ing, my meter kept confirming, and I kept infusing the sugar.  I was under 70 mg/dl for the entire train ride, the cab ride, and then the first ten minutes of the support group meeting in NYC.  By the time the group arrived and we were doing introductions, I was punchy from the sugar rush.

"Hi, I'm Kerri Sparling and I've been low since Karen and I got on the train in Connecticut." 

This is how I decide to introduce myself to the support group in NYC?  Great.  Already off to a decidedly awkward start.  (But I'm nothing if not awkward.)

But these women were patient with my ramblings.  And they truly are something else.  Katie Savin, organizer of the NYC support group for young women with type 1 diabetes, has found some of the most compassionate, open, and well-spoken women in the NYC area to share her space with.  I was invited at their guest speaker, but I was humbled to be more of a guest listener.

They share openly.  Someone asked a question about CGMs and three people leapt up to show their sensors.  A woman shared her emotional journey with complications and guilt and the rest of the group immediately offered words of support and validation.  Another woman is getting married nine days from today and went on her pump barely a month ago, and the group offered tips on hiding her pump in her dress.  Another (with the best hair I've EVER seen) is marrying in November but proactively preparing her body for pregnancy, and I felt her frustrations intimately. 

We talked about what it's like to be newly diagnosed, or a diabetes veteran.  Some on pumps, some on shots, some on CGMs, some on the fence - it was a melting pot of personalities and passions, all lives laced with type 1 diabetes.

It.  Was.  So cool. 

(And I finally had a chance to meet LeeAnn from The Butter Compartment and author Elizabeth Joy. I love putting smiles and inflection to the writers I read, and I was very happy to say "Oh my gosh, hi!" in person.  They are two lovely and extremely talented writers, that's for damn sure.)

The hour and a half meeting ended too soon, and we found ourselves tumbled out onto the sidewalk and chatting out there.  Sidewalk chats lead to sidewalk photo shoots.

And photo shoots lead to "Are you going to put that on the blog?"  

Of course I'm going to put this on the blog, damnit!  :)

(Answer:  Yes.) 

And then we blinked and about ten of us were sitting at the Gramercy Diner and still talking our faces off.  I am constantly amazed by the steady and comfortable flow of conversation between diabetics, and how quickly the conversations stray away from diabetes stuff.  We are not short on things to say, it seems.  (Just short on islet cells.  :: rimshot ::)

Much like the Fairfield County dinners, the group is comprised of people who have nothing in common but diabetes.  But at the same time, that gives them everything in common that they need to sit and talk for hours on a Tuesday evening and become friends.

Thanks for having me, Katie - I was very honored to be your guest.  I hope to see you guys again soon!! 

April 07, 2009

Diabetics Running Amuck in New Haven.

I'm a road warrior ... or at least I was this weekend.  And it all started on Friday night, when I met Manny Hernandez for dinner in New Haven, and we were joined by Adam. 

Manny, Adam, and Kerri in New Haven.
 
Plenty of wine, beer, and coffee later (coffee was me - had to drive to Rhode Island after dinner), the three of us were knee-deep in discussions about Dexcoms, diagnosis dates, and our first low blood sugars.  These guys are true kindred spirits and excellent dinner dates. 

One thing that came up was our "before" and "after" with diabetes.  For Adam and Manny, they were both diagnosed in their late 20's, early 30's, respectively.  For me, I was diagnosed when I was in second grade.  Their "diabetes before" included decades of memories and a certain sense of self, not to mention memories without the disease.  My "diabetes before," for better or worse, doesn't include more than a handful of childhood memories without the disease, and my sense of self is coiled around some aspects of diabetes.

"What's better, though?  I mean, there are pros and cons to both and I don't see a definitive 'yay' to either, honestly."  I drank my second cup of coffee and let the caffeine spin around in my brain.

A lot of the people I'm in contact with that have diabetes were diagnosed in their childhood years - Howard at dLife, Christel, most of the Fairfield County dinner ladies - so they are dealing with the same "lifelong" diabetes as me.  But I've also met many late-onset type 1s - the LADA crew, as I fondly call them and then subsequently picture a fire engine - and their life-altering diagnosis must be so jarring, coming into their lives later.  Adjusting to diabetes wasn't much of a challenge for me because it's almost always been there.  I only had a year or two of elementary school before I was diagnosed.  I can't imagine finishing college and then being forced to change everything midstream. 

But I will admit to a bit of a pang of envy as I tried to remember my first low blood sugar while the guys described the recent memory of theirs.

"I'll have to ask my mom," I said.  "She'll remember." 

It's not a debate, believe me.  It's not a question of "Who has it worse?"  Type 1 diabetes, regardless of it's arrival date, is its own cyclone of discovery.  But the discussion made me realize how long I've had this and how old I'm not.  And when people talk about cures, how lives will be changed when a cure for diabetes is found, and even though I don't often think about a cure, I can't help but happily muse about "diabetes after."

I've kept the tags on for 22 years, just in case I need to make a return.  ;)

March 30, 2009

Trading War Stories.

It weird, because we originally connected through my diabetes blog and her diabetes podcast, and we spent a lot of time comparing war stories about our collective decades with diabetes. 

Diabetes was our introduction, but isn't the glue that holds our friendship together.

We grabbed dinner at Antico Forno in Boston's North End on Friday night with Christi and John, and I was again reminded of how good friends aren't necessarily the ones you talk with every day.  They can also be the ones who you go months without seeing but can fall right back in step with in minutes.

Kerri and Christel, reunited!

(We miss you guys already!!)

March 16, 2009

The "Ellipmachine."

The Ellipmachine ... by Mennen.When I was preparing for our wedding last year, I spent a lot of time at the gym.  A.  Lot.  As in, too much.  If I wasn't at work at dLife or doing wedding-esque things like cake tastings, dress fittings, and bridal shower fun, I was working out and doing my best to keep the stress from fattening me up.

Fitness was my priority.  

But after the wedding, other stuff started to crop up.  Weekends home in RI.  Travel for work.  Writing projects that required lots of attention.  New focuses at dLife.  Every day was this whirlwind of chaos and while I've been having fun and being very productive, my days at the gym were harder to come by.  Before, I was working out faithfully Monday - Friday after work.  But "life stuff" kept cropping up, and suddenly I found myself at the gym only four days a week.

Then it all became a perfect storm of distraction.  I was working late on dLife initiatives.  I was answering emails from my Blackberry into the wee hours of the night and sleeping less.  My wrist exploded in a fit of tendinitis and low blood sugars returned to my life with a renewed sense of determination.  Piles of snow kept falling and the gym kept closing, and on other days, I worked too late to get to the gym before it closed.

My time at the gym went from frequent and intense to only four days a week and pretty remedial.

Not okay, because my body wants to be fluffy.  It may be a family gene pool thing and it might also be exacerbated by diabetes factors, but if I sit still and let nature take its course, my body wants to be a happy 15 lbs heavier.

I, however, do not agree.

But I was frustrated because between feeling stressed and having lows again, my caloric intake far exceeded my burn off.  Thus, I lost any semblance of abs.  (Shame, too, because I liked them while they were there.)  So, in effort to reclaim my abs before I get pregnant and become a happy beach ball swallower, I did my part to stimulate the economy:  I bought an elliptical machine.

Or, as I keep calling it by mistake, an "ellipmachine."

It was delivered and assembled last Monday morning, and I called Chris (who was on business in California last week) to tell him it had arrived safely.  

"It's here!  The ellipmachine!"

"The what?"  

"I mean the elliptical."

It's a nice machine - very smooth and not clunky as to annoy our downstairs neighbors (I do not want to become Shoes) - and I used it every day last week for an hour.  Now I'm able to go out with my coworkers after work for an hour or two and still manage to slide a workout in.  I am also hoping to use it in the mornings (provided I'm able to get to bed at a reasonable time and eek out a 20 minute workout in the am).  My main hope is to reclaim the level of fitness I worked so hard to achieve before the wedding but lost a bit due to that pesky "life stuff."  

Last week, while Chris was out of town, he called one night and I answered, panting.  

"Hey baby ... what are you doing?"

"Dude, I'm on the ellipmachine."

I could hear him laughing.  "The ellipmachine, eh?"

"Oh you know what I mean."

Here's hoping that the ellipmachine can help me get a workout in even when my schedule wants to thwart my good intentions.  I'm ready to battle.

(Take that, early gym closings!  En garde, late nights at work!  Pffffft, snow days!  Come back, sort-of-abs!) 

March 13, 2009

My Mom Says Hi.

I love my mom.It's no secret that my mom is a huge part of my success as an adult with diabetes.  Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me. 

My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again.  Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal." 

From My Mom: 

Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post.  What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)

The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.

Parents are responsible for the well being of their children from birth to when they  are able to live on their own. (Not that it stops us from worrying.)  Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.

Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.

I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun?  But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!

I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!

Thanks, Mom.  For everything. 

March 11, 2009

Diabetes Back in the Day.

Last night, I found a box of old diaries.  I've been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content. 

It's strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I'm not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a "baby." But Butthead said he couldn't do it because he was "diatetic."  The teacher reprimanded him by saying, "That's DIABETIC, and yes you can do this."  I'm not exactly sure why, but that comment bothered me.  Alot.  I think it's because I'm so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about 'HandyMan' on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said "diabetes" correctly. 

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn't help but overhear.  She said, "As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff."  Am I a burden to my family?  Do they resent my diabetes?  Do I have a "normal" life? 

This isn't to call my mother out for saying this.  I've heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break. 

Funny - I've always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that's confusing because I say I don't want to be treated differently at the same time.  It's weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I'm going nuts.  At least at CBC I'm not the only one who feels that way.  If I tried explaining that to my friends, they'd look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  :)

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It's a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I'm not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

(And some embarrassing diary snapshots coming soon ... once I get the guts!)

March 09, 2009

Diabetes + Stem Cell Research = Hope.

Go Bama!  Go Bama!Chris and I were talking the other day about something completely random, when he turns to me and says, "Oh, wait.  Did you hear that Obama is signing that bill to reverse the ban on stem cell research?"

"I did."  

"So?  Are you excited?"

And I thought about the last two decades.  How the veiled promise of "five more years and then ..." and still nothing. 

"I'm hopeful.  You know me, baby.  I'm almost always hopeful, but until it's actually real ..."

He gave me a grin.  "We just keep you healthy and hoping, right?  Well, this is a huge leap forward."

And today, we leapt as President Obama reversed the ban.

We'll keep hoping.  With the JDRF actively leading (and Tweeting!) the charge, and with diabetes on the national stage, progress could actually be made.  Not just a product redesign or another clever device, not just another type of insulin or another pill - real progress.   

I'd love to go from "type 1" to "type: cured." 

(I've been itching to use the past tense for a long time now.)

February 23, 2009

Health 2.0 and Bloggy Bits.

I'm so blogging this.  Dude.I wrote this post on Diabetes Daily a few weeks back, but I wanted to share this here, too.  When it comes to patient blogging, there are plenty of people who want to know more and who benefit from the collective sharing of our stories … including those of us who are blogging:

Who Benefits From Patient Blogging?
 
I blog, therefore I am … a better diabetic?

Not exactly.  Even though I’m blogging about diabetes, I am not “a perfect diabetic.”  My blood sugars still ping all over the place at times and I’ve confessed to consuming more than my share of E.L. Fudge cookies.  I am not a perfect patient, and I won’t ever be.  (Is there even such a thing?)  Blogging about a disease doesn’t make me any less “diabetic.”  There is a misconception about patient bloggers – that we have it all figured out.  

Patient blogging is so powerful because it isn’t about finding perfect control or flawless diabetes management, but about sharing what real life with diabetes is like. This was a topic I blogged about early last week and the response from the community was overwhelming.  Patient blogging brings people with diabetes together, confirming time and time again that we aren’t alone.  It’s about sharing best practices and little coping mechanisms and those resonating moments of “Hey, me too!”  It’s the support community we need when diabetes becomes a little “heavy.”

But patient blogging doesn’t just benefit the patients.  Writing daily about diabetes has connected me with doctors who read to better understand the challenges of diabetes “au natural.”  Even though they take care of us and help us make sense of our medical condition, the closest they get to “understanding” is through our blogs.  Patient blogs offer a window into the personal side of disease management, one that our doctors wouldn’t see unless they bugged our homes or camped outside our windows.  By simply tuning in to the lives of bloggers who represent their patient base, doctors can better understand, and better treat, their patients.

My own doctor at the Joslin Clinic reads my diabetes blog.  Sometimes she emails me links to articles she’s come across that speak to my personal goals.  Other times she helps me out with things like insurance appeal letters.  She knows what kind of insulin I’m on and how I attempt to dose.  But through reading my blog, she also knows that there is so much more to me than my diabetes.  She sees stories about my life – my wedding, traveling, stupid cat stories – intertwined with diabetes moments.  It’s not just managing my diabetes specifically, but helping me manage diabetes in my life as a whole.  

The beauty of patient blogging is that it touches so many lives:  the doctors who want to learn more about their patients, the parents of children who cannot yet describe how they feel; the spouses of people living with this disease; the friends and families; the readers who tune in every day; and the bloggers themselves.  “Health 2.0” and other buzzwords don’t properly capture the positive influence of the diabetes community.  Through these moments of sharing, we learn from and support one another, and live fuller lives as people with diabetes.

And my health - my life - is better for it.

Thanks for hosting my post, Diabetes Daily, and feel free to share how you've benefitted from patient blogging, either as a blogger, a reader, or as a medical professional.

February 17, 2009

Larry Bird, At Home.

Larry doesn't let me slack.  Damnit.Brrrrrrrrrriiiiiiing!

"Hello?"

"Keeeeeeer."

"Larry!  dude, how the hell have you been?"

"Dude, don't call me out on being MIA.  You're the one who has been hiding out lately.  Eating kettle corn by the fistful.  Skipping the gym to have dinner with those Fairfield County Dinner ladies ..."

"Hey, wait a second.  I'm not allowed to have a social life?"

"No, you can, but you need to stick with the workouts.  And not just going, but like you need to mentally be there."

"What?  I go!  I'm there!"

"Kerri, you know what I mean.  Over the last two months, you have read seven books while working out.  You can't work out hard when your nose is buried in a book!"

"I'm trying to relax a little bit, too.  Managing stress just as important as exercise!"

"It totally is.  You don't think I got stressed out that January day in '85 against Portland, when I had to hit that baseline jumper at the buzzer?  But you aren't de-stressing.  I've seen you with your Blackberry while you're working out.  Your BLACKBERRY?  That's how you avoid stress?"

"Larry!  How the hell did you see me?"

"Skylights.  I climbed up on the building.  But anyway, you need to tune back into those workouts, Kerri.  You are going through the motions, and that's not going to help you lose those 10 pounds you've gained since the wedding."

"Five pounds, smartass.  And wait, did you say you were peeping through the skylights?"

"Five.  Whatever.  And yeah, the skylights are comfortable.  I usually bring headphones.  But anyway, I want to see some serious effort from you this month.  You were doing really well, and I want to see you back in better shape by the end of March, okay?"

"I can do that.  Actually, we're buying an elliptical this week for the house, so now I can do you at home."  

"That joke never gets old for you, does it."

"Nope."

"Okay, Ker.  Keep it real, and don't let me see you with that frigging Blackberry on the treadmill anymore.  Got it?"

"Got it.  Thanks for checking in, Larry."

"No problem.   Happy belated birthday!"

"Thanks!  Stay off the damn skylights."

Click.

February 13, 2009

Mushy Stuff: Diabetes Edition.

A little love and diabetes never hurt anyone.  :)I love Chris. 

Not that I need to tell you guys - I think it's pretty obvious - but sometimes I lose sight of how much I appreciate him.  I don't tell him how much he means to me as often as I should.  He is a wonderful partner.  There's all the regular relationship stuff- he pumps the gas for my car so I don't have to stand in the cold, he takes out the garbage, he laughs at my stupid jokes, he reads my written messes and helps me make sense of them - but our relationship has an extra, special component that others don't.

He is the significant other of a person with diabetes.  

I don't know what it's like to fill that role.  I am the diabetic, so I only know things from my perspective.  But he makes it look so easy.  A 3 am low blood sugar that has me in tears?  He knows how to quickly give me juice and wipe the sweat from my forehead.  Weeks of working out with no visible results?  He knows what words will soothe me:  "You are healing from the inside out."  Those moments when I feel like I'm crumbling emotionally?   His hugs seem to put my pieces back together again.

And it's not just the serious stuff.  We aren't always talking about complications and fears.  He makes this diabetes stuff feel so normal.  He makes me feel like everyone is wearing multiple devices attached to their body when they climb into bed.  Disconnecting a pump before sex?  Who doesn't do that?  Attaching a new sensor becomes something we do together, with me inserting the needle and Chris wielding the hairdryer like Johan

Chris celebrates the victories with me.  When my wedding dress was perfectly fitted with a pocket to conceal my pump, he knew that was an important moment.  When my period fell perfectly into monthly step after going off the pill, we actually high-fived.  When the Dexcom shows a nice, nine-hour flatline, we do a dance.   And when my A1C dropped a full point, he knew it was a step towards success.

Even though his pancreas works properly, he lives with diabetes, too.  Just as every loving caregiver of a PWD lives with diabetes.  They don't feel the highs and lows as acutely as we do, but they have their own individual variations on these moments that are just as poignant and just as evocative.  Chris understands what this disease means and how it can unfold, but he's as committed to my health and to my life as I am.

Some would say that he loves me, and my diabetes

But I can say that he just loves me.  It's not about diabetes.  It's not like "Kerri" and "diabetes" have to be separate entities, just like "writer" and "uncoordinated" and "messy-hairdo in the morning" and "hot-tempered" remain parts of my whole.  I'm one big mess, and he loves me just as I am

This Saturday will be my first Valentine's Day as his wife

"What I really want is to celebrate a 50th anniversary with you, Chris," I said to him over the weekend.  "Do you think we'll do that?"

He knows what I mean.  Not "Will we be together," but "Will I be okay?" 

"Of course we will."  He knows this.  It's a certainty.  "You'll be 79.  I'll be 81.  And Siah will be 53." 

He's a ridiculous man and I'm lucky to have him.

(And I'll always, always write his name in the peanut butter.) 

January 27, 2009

Not Perfect, Never Claimed To Be.

Diabetes perfection?  Nope.A few weeks ago, when I was gearing up to hear my A1C results, I admitted freely that the wedding stress of eight month ago really left it's mark on my numbers.

And over that weekend, I received several emails from people that said, "Me, too!  I have trouble lowering my A1C too, but every step towards my goal is a step in the right direction!"  I also received emails just wishing me some luck on controlling these numbers.

Then there was the one that asserted "A person in your public-facing position should have better control of their numbers.  You are a role-model and someone that should set an example to these young children.  An A1C of 7.5% is not good enough."

And then there was a comment from Dr. Bernstein:  "An A1c of 7% corresponds to an average BG of 180 mg/dl.  Not a wise target for someone who wants to become pregnant.  A normal A1c is 4.2-4.6 % -- not what the ADA promotes.  Pregnant non-obese non-diabetics usually have blood sugars below 70mg/dl."

I'm not sure what kind of impression people get of me from reading this blog, but if I've made the mistake of fooling you into thinking I know how to perfectly control my diabetes, that unfortunately is not the case. I'm not a role model, not like that.  I don't have perfect diabetes control and on some days, I'm not sure what to do next.  I am trying to fill in for my islet cells, for an organ that went rogue on me, and it's not a science I've perfected.  I'm working hard, every day, to achieve a level of life and health balance.

So to the folks who think I should have an A1C of 5.0% simply because I blog about diabetes ... for those who are reading and clucking your tongue against the roof of your mouth - "Oh, her baby is going to be upset in there if she has an A1c that high when she conceives." - I invite you to stop clucking around.  (Puns.  Cannot resist.  Sorry.)  SUM is a public blog, and I've made the choice to make my diabetes life a public one, but I'm not a doctor.  My A1C is not 5.0%.  I don't have this "all figured out."  (And I sometimes eat E.L. Fudge cookies when I'm frustrated.)  

But blogging has provided me with a support community I couldn't have imagined.  I can't even begin to tell you what kind of an impact you all have had on me, proving time and time again that I am not alone with this disease.  You guys make me feel connected, secure, and confident that every bump along the way can serve to educate me and make me a tougher (E.L. Fudge?) cookie. I appreciate the support, and I appreciate the criticisms because they are more than valid.  But don't expect me to have this thing completely controlled.

I want to be healthy, and I want to enjoy a healthy pregnancy in my future.  I am working to bring my body to a state of optimal health, but I'm not lying to myself, or to my readers, along the way.  Shit.  Gets.  In.  The.  Way.  I can't pretend to be perfect, but I am honest about my shortcomings, and I am trying to do better for myself and for my family

If you want to leave comments about how you think I should be better controlled, I'll agree with you.  If you want to peck at my armor and find the kinks, you won't have to look very hard.  I put all of this out there knowing the risks and the judgments that come with a public-facing blog.  And I appreciate that people care and offer their opinions and perspectives (both good and bad), and provide that community I was craving when I felt alone. 

But my diabetes, shared with the Internet or not, remains mine. 

Remember that before you pick up a stone.  My house isn't the only glass one.

January 26, 2009

The Biggest Loser: Diabetes-Style.

The Biggest Loser:  Diabetes-StyleReckon that on these here diabetes blogs (spits into spittoon), we do a lot of sharing.  We share our best diabetes practices, our literal highs and lows, and we also have the common bond of this disease.  And through these shared experiences, we learn to take care of ourselves, and each other. 

(Is that Jerry Springer's line?  I can't remember.  But in any event, I mean it.)  

So when I heard about The Biggest Loser:  Diabetes-Style, I knew this was another example of the power of the diabetes blogosphere.  Turns out that 18 of our very own are taking on a "Biggest Loser" type challenge, and they're letting us follow their progress and become inspired by them along their journey. 

My friend Landileigh, creator of Landileigh's Little World and this weight loss challenge, took some time to talk with me about The Biggest Loser:  Diabetes-Style and how she's hoping it will rock their worlds!

Kerri:  What made you want to start The Biggest Loser - Diabetes Style?   And how long is the program?

Landi:  With having Chronic Kidney Disease, I need to be at a weight that won’t be so hard on my body for when the time comes for dialysis. My good friend George over at TheBADblog.com was also going through a similar weight realization and I knew he couldn’t go through this alone, and neither could I. The Biggest Loser ‘D’ Style was born with helping the two of us out. I never thought I’d have 18 people join up!  We’ll be following the schedule of the show … so 12-16 weeks.

Kerri:  What was the catalyst?

Landi:  Seeing this picture! I never realized I’d gotten so .. ummm.. large.

Kerri:  You say on your site that it's not about diet or exercise, but more about supporting one another as you work towards better health. How are you guys rallying the troops and keeping everyone inspired?

Landi:  I’m sending daily emails to everyone who is participating, and posting on my new blog at www.landileigh.com.

Kerri:  How are you holding one another accountable? How do you keep track of where people are "starting from" and what their goals are?

Landi:  No holding back, it is out there on the internet for everyone to see. If you can’t post it and show it, you can’t say to yourself that you want to do something about it.  I have a large spreadsheet in Excel that is keeping it all [the results] straight for me.

Kerri:  You have Other Diabetes, and many of the other participants are also diabetic, or the parents of diabetic kids. Does the same kind of inspiration work for all kinds of participants, or do you need to tailor your approach?


Landi:  I think the main goal is doing this for our health, diabetes or not. Obesity and being overweight is one of the largest health concerns there is today. I’m not guiding people on what their diet/exercise plan is. There are tons of them out there for them to pick from. But I am asking that people say, "Here I am! I want to do something about it!" Kind of like an AA program for being overweight. I also wanted to help my comrades in the D-force!

Kerri:  What happens when you guys cross the finish line?


Landi:  For every week that you completed that week’s challenge and sent in your weight, your name goes into a hat. At the end of the 16 weeks, names will be drawn and given prizes. So far I’ve gotten donations from Rickina at StickMeDesigns and AmyT at DiabetesMine will also be donating prizes.

Kerri:  What happens once the 16 weeks are over?
 
Landi:  Hopefully they’ll be less of us! And I’ve already been asked to start a Biggest Loser ‘D’ Style II for people that weren’t able to get in on it this time.

To follow the success of the Biggest Losers:  Diabetes-Style, scuttle on over to Landi's blog and stay tuned!  (And look out for some prizes from me here at SUM - hopefully it won't be a lock of Siah's fur.)  Thanks, Landi!!

January 14, 2009

A1C - Sigh.

I had my A1C drawn on Monday.  Late.  I haven't had one since like June and that's waaaaay too long between results.  The last one, taken a few weeks after we returned from our honeymoon, was extremely high (or at least extremely high for a woman who is trying to gain better control as she plans for pregnancy ... in third person) and I was very reluctant to have another one done.

I hate negative reinforcement.  I don't like that feeling of "Hey, you worked hard.  You really put a lot of effort into managing this disease.  Here's your shitty A1C."  And that feeling of "ARGHHHHH!" is what I'm vlogging about this week.   

(Also, guest appearances by Siah, the Dexcom, and some bed dinosaurs.)   

December 04, 2008

Wintuk.

With a year that's gone by in a blink and a holiday season that's already at my doorstep, I needed a little something to get myself into the spirit of the season. 

So last night, while New York was celebrating the lighting of the big tree in Rockefeller Center, Chris and I went to Madison Square Garden to see Cirque de Soleil's "Wintuk."

I had never seen a Cirque show until this past summer, when we saw Kooza in Hartford.  It.  Was.  Awesome.  Kooza was a circus for grown ups, and Chris and I spent the entire show with our mouths hanging open, muttering, "Did you see that?"  So when we saw tickets for Wintuk on sale in NYC, it made sense (not economic sense, but life sense) to take in that show.

And it, too, was awesome.  Different from the circus-esque feats of Kooza - more of an actual show than an interactive performance.  Trampoline acrobats, this flexible lady with a stash of sterling hoola hoops, and performers in the best dog costumes I have ever seen.  

And at the end?  Massive birds (like you do).

Wintuk in NYC

And thousands of snowflakes raining down from the "sky."

Paper snowflakes at Wintuk

With this weekend's cookie party on tap, Wintuk still fresh in our minds, and holiday parties cropping up at every turn, it's beginning to feel an awful lot like Christmas.  I may have to force Siah to wear some kind of Santa hat and join in the fun.  ;)  

December 02, 2008

FiveHumans: Curing Ignorance.

At the WDD event in NYC, there was this really nice guy who came up to me and said, "Okay, this is going to sound completely weird, but I think I know you from Facebook.  Are you Kerri?"

And this is how I met Lee Fine from FiveHumans.com. 

He was attending the World Diabetes Day event as one of the Discovery Health Ambassadors, and his words inpired the crowd.  The company slogan of FiveHumans is "Ignorance is a curable disease."  I'm so on board for that.

Lee Fine of FiveHumans at WDD

According to their website, "Dan Grunvald and Lee Fine (read Lee’s story here) first dreamed up the concept of producing t-shirts with slogans and information related to a variety of diseases, which they called Disease Tees. Their goal was to help raise awareness and provide a tangible opportunity for people to support a cause near and dear to them." 

In 1999, Lee was diagnosed with type 1 diabetes.     

Lee's diagnosis, in his own words:  "The memory of sitting in the doctor’s office reviewing my blood test results is still fresh in my mind today. I was in complete disbelief. I had never felt so alone, so vulnerable, so nervous.

Since becoming a diabetic, my life has changed significantly. At times, I’m the model patient, while at other times, I’m the guy questioning my decisions, wondering when the heck I’ll get my act together. Hey, I’m Human, and as anyone with a disease will tell you, it’s a day to day affair. One thing I have done consistently is become an advocate for my disease. Before my diagnosis I knew more about the JFK conspiracy theories than I did the difference between Type 1 and Type 2 diabetes, but through life experience I’ve become an expert on all things related to diabetes and I’m always eager to enlighten anyone who’s interested in learning."

It's remarkable to see people really taking advocacy to a higher, more tangible level. Their products are cool looking, yet they make you ask questions.  Nicole (self-proclaimed Fourth Human) contacted me a few weeks ago and offered to send me one of their diabetes t-shirts.  It arrived last week, and it is awesome.   

FiveHumans t-shirt
 One Test at a Time.  Don't we know it.

To contact FiveHumans and share your story, click this link.  And if you want to check out their clever selection of inspiring t-shirts, check out their online store.  Take note:  FiveHuman will be offering the 12 days of holiday giving starting December 1st, 2008. For 12 days they will offer a daily holiday promotion on their website.

Ignorance is a curable disease.  And by spreading the word about diabetes, we're doing our part to at least cure ignorance.  That's a change we can make today. 

November 17, 2008

World Diabetes Day in NYC.

Last Friday, on World Diabetes Day, I had the pleasure of spending the day with Fran Carpentier at the Young Voices event in NYC.   Discovery Health showcased the video submissions from people with diabetes and they had a talented panel of guest speakers and ambassadors, including Lee Fine from FiveHumans, the adorable Charlie Kimball of racing fame, and Miss Black USA Kalilah Allen-Harris

I had some great interviews with these folks that I'll be posting over the next few weeks, but in meantime, I wanted to share some photos from the event.

World Diabetes Day in NYC 

Former Mets player Todd Zeile, Fran Carpentier, Kerri Sparling, ESPN report Brian Kenny, and country star Steve Wariner 

Fran, Kerri, and Kalilah. 

Fran, me, and Kalilah Harris

Charlie Kimball and Kerri Sparling 

Charlie Kimball and me.  :) 

A big part of what was discussed at this event was the DAWN Youth Initiative, which is dedicated to improving the level and conditions of psychological support for kids and young adults with diabetes.  The DAWN Youth WebTalk survey was conducted in partnership with Novo Nordisk, the International Diabetes Federation (IDF) and the International Society for Pediatric and Adolescent Diabetes (ISPAD).  I had a chance to speak with Dr. Barbara Anderson, DAWN Youth Advisor (and a former part of my own personal diabetes care team at Joslin!) about diabetes, depression, and how we deal with diabetes.  "It's important to be in touch with other young people with diabetes," she said, and I thought of all of us here in the diabetes blogosphere.  Our interactions with one another are crucial to our diabetes management.  We keep one another sane!

World Diabetes Day was recognized across the world and the outpouring of support was tremendous.  Over 1,000 landmarks were lit in blue.  Those of us in the blogosphere wrote about our diabetes lives, created videos, and even expressed ourselves in song.  But there is still a lot of work to be done (check out the comments on my YouTube video for examples of miseducation and ignorance).  And every day, we all help to raise awareness in our own ways.

How did you celebrate World Diabetes Day?  Feel free to post your link in the comments section.  And with almost two weeks left in Diabetes Awareness Month, how will you close it out?  (Should I dye Siah blue?  Somehow, I think she'd find a way to thwart me.) 

(And, for the record, I wore a bright blue scarf on Friday to show my support.  But it was muggy as hell in the city, so the scarf ended up crumpled up in my purse instead of around my neck.  I tried, I swear!)

(One more post script:  Today is my brother's birthday, so wish him a happy one!) 

November 10, 2008

Waldorf'ing It.

This past Saturday, Chris and I had the absolute honor of being Fran Carpentier's guests at the JDRF Promise Ball in NYC.  At the Waldorf=Astoria hotel, where I felt waaaay out of my league but thrilled to be there. 

We don't have the opportunity to rock the black tie very often, so it was a fun treat to get all dressed up again.  

Kerri and Chris, black tie and all!

Chris and I at the gala, feeling rather spiffy.

Fran, Kerri (me), and Gina

Fran Carpentier, me, and Gina Capone with our big grins.

Gina, Tom, and Kerri (me)

A D-Blogger sandwich, with Mr. Tom Karlya at the center.

The night was beautiful, with friends and wine and many laughs.  With Mary Tyler Moore speaking to the crowd from years of experience with type 1 diabetes, and with Elaine Stritch backing her up in style, the crowd was impassioned, inspiring, and ready to spend. 

And oh how they spend.  I have never before seen 2.5 million dollars raised in the matter of an hour.  One quick lift of a sign gifted the JDRF with tens of thousands of dollars.  I sat there in awe, trying to keep the tears out of my eyes as people gave so much.

I don't know how many people in that room were living with diabetes themselves, but I know that at my table alone, Fran, Gina, and I tested our blood sugar before eating.  I know that there were others in the room who were also living with this disease, like my friend Jon who I worked with at dLifeTV, and Allison, and several children who would grow up, just like we did, with type 1 diabetes.

The JDRF is a remarkable organization, but there's still so much left to do.  I've been diabetic for 22 years and I have not yet seen a cure.  Fran has been diabetic for 40 years, and has not yet seen a cure.  Isn't it time?  Time to tell people that diabetes doesn't go away, that it can't be ignored, and that it deserves the attention of the nation?

November is Diabetes Awareness Month, and we need to remind our country - our world - that we are still waiting for our cure.  Raise your voices this month and let people know what life with diabetes is all about.

November 09, 2008

SUM Diabetes Blogging.

Today is the fourth D-Blog Day, and I'm proudly raising my voice with you guys, the diabetes community.  Three years ago, I wrote about why my blog is called "Six Until Me."  Two years ago, I wrote about my heroes.  And last year, I wrote about what matters.

This year, I wanted to thank you guys for being such a crucial part of my health.  You are all heroes, and I appreciate every one of you.

November 06, 2008

Petal By Petal.

I'm picking my priorities, petal by petal.

I'm choosing to wear this Dexcom and adhere another site to my body.  I'm choosing to have the beeps ring out and scrape against the walls of my office, letting everyone know I'm out of range somehow.  Sometimes the site doesn't bother me, sometimes it itches a little bit.  Depending on where it is resting, either on my arm or on my lower back, I sometimes see it in the mirror and am reminded of what I'm trying to accomplish.

I'm choosing to test my blood sugars and log the results regularly these days, even though keeping a log book goes against what appears to be my internal wiring.  I've always been challenged by keeping track of blood sugar numbers, even though just looking at a few days' worth of numbers really does help me isolate patterns.  I'm building a binder, and it's a pain in the arse, but I'm hopeful that tighter numbers will be the result.

I'm choosing to laugh at the things that hurt me.  When the infusion set hits a nerve as it goes in or when my CGM site bangs against the doorjam, I try to embrace my inner Yosemite Sam instead of letting the pain get to me.  Making this choice makes me hop around like a rabid bunny sometimes, and eventually gets me giggling, but it's better than feeling angry.

I'm choosing to go to the gym after work every weeknight.  I do not like the impact this has on my free time, and I don't always like the actual sweating part (oh how I hate to sweat), but I need to keep my heart healthy and my body strong ... and it helps clear my head a little bit, too.  So even though this hour and a half is something I want back at times, I know this choice is worth it.

I've chosen to limit my commitments these days, because over-extending myself leads to stress patterns that make my brain melt.  I'm stoked to do NaBloPoMo, but I've ducked out of doing NaNoWriMo this year.  I'm working at dLife and freelancing, but I'm being careful not to plan to be in fourteen different places at once.  I've decided to stay home in CT some weekends instead of making the long drive back to Rhode Island.  Peace of mind goes a very long way for me, and I'm making the choice to stay a bit more stable. 

Life gets busier and busier every time I blink, and I know it's not just me.  Everyone seems to have a side business they're cultivating, or organizations they're volunteering for, or events they're coordinating.  Life is blasting forward at a breakneck pace and we, as members of this community, have that added bonus of diabetes to manage in conjunction with everything else.  I'm trying hard not to get sucked into the stressful chaos of accomplishing everything, and instead giving a go at managing life petal by petal. 

Diabetes management, petal by petal.

November 03, 2008

Diabetes Crush.

I have to admit it:  I have a diabetes crush.  He is funny, upbeat, realistic, and is easy to identify with.  I've watched all his dLife segments and I think I speak for the entire dLife editorial team when i say, "Jim Turner ... sigh ... he's the best!"

And he came into the office on Friday, just in time to see us all decked out in our Halloween finest.  (Note:  I managed to ditch the red riding hood cape for the picture, but others weren't as quickly uncostumed.  The coworker on my left doesn't usually have this fluffy hairdo, for example.) 

Jim Turner and the dLife Editorial Crew
Swoon. 

Jim Turner has been living with type 1 diabetes for several decades now, but you wouldn't know by looking at him.  He looks healthy, seems happy, and has a wicked sense of humor that makes you giggle at things you didn't even realize were potentially funny.  If laughter is the best medicine, then Jim might be the ultimate endocrinologist. 

And of course he comes in on a day when we're all dressed up like goof balls.  

Thanks for entertaining us for the afternoon, Jim.  We remain your loyal fans!!  

Swoon again. 

November 02, 2008

Patients and the Web.

(Sounds sort of like a children's book title, no?  "Once upon a time, there was the Internet...")

My friend Berci at ScienceRoll asked me to create a video to show his Medicine 2.0 class how the web can impact chronic disease management.  My take on the whole concept is that it's amazing how the web can bring a world of people together to share their common experiences, which for me makes diabetes less isolating.  I used to be one of the only diabetics I knew - now I know hundreds! 

Thanks, Berci, for letting me virtually address your class.  I hope they didn''t think I talked too fast.

October 27, 2008

Do Something!

Mollie Singer is a sweet girl, a talented singer, and a fellow type 1 diabetic.  And like me, Mollie has the benefit of a really terrific support network that helps her better manage her diabetes.  In particular, Mollie has her twin sister, Jackie, who rises above all others to support her.

I'm happy to share that Jackie has been selected as one of the winners of the Do Something awards, and as part of a partnership between Do Something and Doritos, Ms. Jackie herself will be featured on the back of a nacho cheese Doritos bag.  Jackie is highlighting diabetes awareness and their organization, the Diabetic Angels

Mollie and Jackie Singer

Congratulations to Jackie, and thanks to her for her hard work in raising awareness for diabetes!!  And be on the lookout for these snack-tastic heroes in grocery stores today!

October 22, 2008

Diabetes Goodie Bag.

Le Goodie Bag.  Le French.  Fronch?  Fronch fries.Over the past few weeks, I've received some terrific diabetes-related products and information from people out there who are aiming to make a difference.  Ranging from support groups to bracelets, it's time to help spread the word.  (Note:  I received all of these products as samples and have not paid for these items, nor have I been paid to talk about these items.)

This is a green dot.First off, some bracelets from Lauren's Hope came in the mail.  I had a bit of an addiction to beaded medical alert bracelets a few years ago, and this care package seems to have reignited my love for something diabetes-related and delicate.  The beaded samples were beautiful (pictures coming on Flickr later today) and there was also a very cool waterproof/adjustable/washable bracelet that would be great for active little kids ... or active grown ups.  :)  If you are looking for some medical alert jewelry options that are a little different and fun, check out Lauren's Hope.

This is a green dot.I also received a sample from Stephanie Cion at WellAlarm, and she was kind enough to answer a few questions about their unique service (interview will be posted later next week).  The charm itself is sleek and classy looking, and has a sophisticated look, considering it's intended for medical use.  There is a PIN on the back of the charm that, if someone called the number and punched in the code, they'd have access to my medical information. I think this is a unique service and has some potentially life-saving benefits, but I have to admit - the idea that dropping this charm on the ground leaves my information potentially vulnerable.   (Important note:  "regular medical information" can also be engraved on the charm, so it's not just a PIN code.)  WellAlarm has received some good press this morning already, being featured in this morning's HARO newsletter.  I'm curious to see where this product lines goes.

This is a green dot.Bob Hawkins sent me a copy of his terrific book, The Joy Of Diabetes.  I'm a huge fan of anything that helps to raise awareness for diabetes in a way that's easy for people to understand and identify with.  Bob writes about his 45+ years with type 1 diabetes in a way that isn't intimidating.  His little cartoon avatar explores everything from alcohol to exercise to aiming for the joy in life.  I definitely recommend his book, and you can order a copy from his website.

This is a green dot.And I heard from Katie, one of my readers in NYC, that she's starting a support group which is meeting fro the first time on November 18th at the Friendman Diabetes Institute.  According to the flyer, "This group is open to members of the public who are young women living with diabetes. There is no cost for participation. The group will be self-led however there will always be a staff member from Friedman Diabetes Institute available during the meetings. We are creating a place to talk with others about living with diabetes, particularly as young adult women. If you think this group is for you, it probably is. Please get in touch and let us know that you are interested and if you can make it to the first meeting."  For more details, check out this flyer and email Katie at DiabetesNYC [at] gmail [dot] com.

This is a green dot.One other thing, for all your vloggers out there: The JDRF, Discovery Health, and Novo Nordisk are calling for video submissions for their Young Voices: Life With Diabetes program. Videos are being accepted until November 1st, so get cracking!  The videos should be "highlighting your attitudes, wishes, and needs for how the next U.S. president can help defeat this disease."  Okay, easy enough.  The website states:  "For video submissions, Novo Nordisk will donate $10 to the Juvenile Diabetes Research Foundation to help fund research leading to a cure for type 1 diabetes. For teams, group entries, or multiple videos submitted by an individual, a single donation of $10 will be made. Novo Nordisk will make a total donation of up to $25,000."  For more information, visit the Young Voices website and raise your voice!  :)

That's all for the goodie bag today, aside from piles of tissue paper that Siah is already dancing around in.  

Oh, one last thing:  I bet I'm the last person on the whole damn internet to see this video clip, but have you caught the drunken Orsen Wells commercial?  The moment at 0:51 made me laugh so hard that I watched it several times over.  "MmWaaaHaaa ... the Frensh!"

October 14, 2008

Fran's Diabetes Parade.

A cup of coffee with a fellow diabetic.  :)There's that instant connection between people who have diabetes, because we really know.  We know what it's like to test blood sugars, count carbs, wrangle in pump tubing, battle numbers, fear complications, and live life with this disease every single day.  We get it, physically and emotionally.

And then there are the people with diabetes who you connect with, regardless of the disease bond.  When I heard Fran Carpentier take the microphone at the Women's Empowerment, Diabetes, and Development event (sponsored by Novo Nordisk, World Diabetes Foundation, the MDG3 Global Call to Action, and the Global Alliance for Women's Health), I knew this lady was on my wavelength.

"I didn't cry when I was diagnosed because my mother was too busy fainting," she said with a loud laugh, filling the room with her warmth and charismatic spirit.  Type 1 for over 39 years and a Senior Editor at Parade.com, Fran looks healthy, sounds healthy, and has a seemingly unbreakable spirit.  And she's passionate about diabetes.  Diagnosed in 1969 and "Patient No. 2" of the landmark DCCT trial, Fran stated confidently, "You not only survive, but you also prevail!"

After the speakers finished their presentations, I made my way over to Fran to introduce myself.  Instant connection - we started comparing diagnosis dates, insulin pumps (we're both Medtronic users these days), questions about CGMs, and talking about those moments that only another diabetic woman can understand. 

"So my pump is here," she reached into her shirt and pulled out her insulin pump.  

I laughed.  "Mine, too.  In the bra is the best place to hide it in a dress!"  

We sat at one of the tables in the conference room and chatted without effort.  Life as a diabetic, life as an editor, growing up in RI versus growing up in NYC, insurance battles (at that time, I was mid-stream in my war with Oxford for the CGM), and diabetes blogs.

"I've been a diabetes blogger since May 2005.  It's a fantastic way to connect with other diabetics, and to help me feel like I'm not the only one out there who is dealing with this."  I grinned at her.  "It's what connected me to dLife in the first place." 

"I know!  I've read your stuff!  I'm starting my own diabetes blog next month at Parade.com."

The conference ended, yet we found ourselves at a diner down the street, sharing stories over many cups of coffee (don't worry - we switched to decaf to prevent off-the-wallishness).  Diabetes brought us together and gave us "war stories" to share, and we spent several hours chatting each other up.  It was like connecting with an old friend, even though we'd never met before.  

I sat across from Fran, a powerful career woman with a laugh that caused heads to turn at the diner and with her pump casually hanging out of the front of her dress, and I saw what I hoped would be my future.  Thank you, Fran, for being someone I can relate to, respect, and hope to be just like.

Editor's Note (read:  more from Kerri):  Fran's blog is live!  Check out Diabetes, Day-By-Day over at Parade.com!

October 08, 2008

My Parents.

I saw a mother and her eight year old daughter at the train station this morning.  It was kind of chilly out, so most of the conversations on the platform were visible, with little puffs of cold above the speaker's mouths.  The mom leaned over to her child and touches her finger tip to what looked like a cell phone.  The child drew back her hand and stuck her finger in her mouth.  The mom looked at the machine, furrowed her eyebrow, and  said something to her daughter.  Her daughter reached into her coat, pulled out another machine, then tucked it back into her jacket. 

Untrained eyes wouldn't see this action as anything of note.  Commuters weren't staring.  Everyone was going about their business - a regular Wednesday morning.  But I saw this mother's daily business - keeping her child alive.  I'm watching this from the sidewalk, not able to hear what's being said.  I can only imagine the words, but they sound so familiar.

I read a lot of diabetes blogs (I know - me?!) and some of the blogs written by my fellow diabetics really touch my heart.  Even though we're all working at different jobs, driving different cars, maintaining different values, and living in different families and skins, every last one of us is dealing with the same vulnerability.  We're all trying to pinch hit for our pancreases, and it can be a tough road at times.

Reading the blogs from the parents of children with diabetes ... they touch my heart, too.  But some times they break it.  

I forget that while I'm testing my blood sugar, wearing the pump, and doing my diabetes thing every day, my mother and father are still worrying.  My parents had to step in when I was diagnosed because I was a little kid who has more interest in climbing trees than climbing blood sugars. And I can't imagine what it's like to have a child with diabetes - I've only been a child with diabetes, and now an adult with diabetes.  Sometimes it hurts a bit to prick my finger or do an injection, but I can control and manage that pain.  I can't imagine what it must have been like for my mom to have me crying and hiding behind the dining room curtains while she drew up my shot when I was a kid.  It wasn't like that all the time, but I'd imagine that once was enough to leave a mark on my mother.

They are always our mothers.This mother this morning reminded me of my own mom.  Made me think about the other parents of kids with diabetes, and what they do every day to keep us safe, healthy, and able to be kids.  Just regular kids, even if we have to take a break from playing every now and again to test or shoot or eat.  Some of the blogger moms and dads write about their child's diabetes, and I have to really concentrate to find the bits of diabetes memories from my childhood.  And I prefer it that way - my childhood wasn't "childhood with diabetes" but instead just "childhood."  Our parents, they protect us and keep us safe from feeling scared and unsure.  They absorb those feelings for us and try to make our lives as normal as possible.  And I am so thankful for everything my parents did for me.

The train rumbled to a stop and the mother and daughter climbed on board.  And I went into my office and called my mom.  

October 07, 2008

Doodle For Google.

A Doodle For Diabetes!You know those cool little drawings on the Google homepage?  The moaning man on Edvard Munch's birthday?  Or the one of the turkeys sitting around the dining room table to mark last year's Thanksgiving holiday?  (That one was pleasantly ironic.)  These doodles are done up by the Google crew to raise awareness for specific events and holidays.

And this year, the diabetes community is aiming to have a diabetes doodle for World Diabetes Day on November 14th.  

"How can I help?  I can't even draw a straight line!"

Yes, there is something you can do.  The advocacy crews at Diabetes Daily and TuDiabetes have teamed up to get Google's attention by providing a petition with 20,000 signatures by November 1st.  That means we only have the month of October (which is whizzing by) to get names added to the petition. 

Sign the petition by clicking here.  Add your name, then share it with your coworkers.  Send it to friends.  Family members.  Buddies from Facebook.  Your Twitter pals.  Ask your brother (Hey Darrell) or your sister (Hi Court) or husband (Hi Chris!) or your mom or dad to sign.  Maybe even send it to the nice man at the Honda dealership who is working to get you a new car at a reasonable finance rate.  (Hi, Bill!)  Either way, 20,000 signatures isn't going to be easy, but if there's any community that can pull it off, it's us.

I think it would be pretty damn cool to have our own Google doodle.  Let's make it happen!!

October 03, 2008

Approved!!!

I have been approved!!!!!!!

YAY!!!!!!

They're covering my sensors.  I cannot believe it.  And from what I've been told, I'm one of the first on Connecticut's Oxford Health Plans to be approved for CGM use. 

Also from what I've been told, it takes an external appeal to make it happen.  So if you are fighting for CGM coverage, DO NOT GIVE UP.  Keep fighting!  Appeal every denial.  Make sure you don't miss any appeal deadlines!  It seems like insurance companies deny everything at first and only approve once you battle back.  So keep fighting, and do not give up!  (And use exclamation points!  Ahhh!  I'm so excited!!)

The tools to live well with diabetes should not just be for the people who can afford them.  Fight for your right for coverage.

October 02, 2008

A Unified Front.

United by diabetesTmana wrote a post on TuDiabetes today that hit home and hit hard. An excerpt:

"I am concerned that these different outlooks and interests could, rather than unite us in the common cause of improved quality of life and life expectancy for people with diabetes, cause public conflicts that could rob all of our communities of the resources needed to assist diabetics, both within our online communities and outside of them."

I agree with this whole-heartedly.  While I'm an in-house editor at dLife, a member of several online communities like TuDiabetes, Diabetes Daily, a diabetes blogger here at SUM, and an active supporter of organizations like the JDRF, ADA, CWD, and DRI, these things all come second to why I'm doing this in the first place:  I am a person with diabetes, a diabetic, a type 1, pancreatically-challenged ... whatever you want to call me, I have diabetes, first and foremost.

What I care about is improving my life, and our collective lives, as we live with diabetes.  I want to see support communities do just that - SUPPORT.  The very concept of different online groups pitting against one another is ridiculous.  Aren't we all working towards the same common goal?  To live long, healthy, and well-supported lives with diabetes?  To see technological improvements?  To see a cure, maybe in our lifetimes? 

Everyone has different agendas and different goals - I understand that.  But I also understand that diabetes is not a business to me.  It's my life - our lives.  And anything that can improve that life should be supported and encouraged, despite whether or not I'm a member or if I participate in a fundraising walk. 

And while I understand the business aspect of different companies and organizations, I don't like the idea of division.  I don't like the idea that three different places are working their tails off to cure this disease, but not sharing the data.  I am not sure who crosses what communication lines, but I want to know that the JDRF, DRI, and other research hubs are sharing their theories on curing this disease.  That is happening, right?  We're all working together to cure this, right?  There are so many different diabetes organizations, but where is our unified front? 

In her post, tmana said that she didn't want different communities to assimilate in efforts to "merely to present a united front to the high-priced resources and partners," and I agree with that completely.  This disease is unique to each diabetic and their loved ones, and the various communities and organizations reflect that.  But I want the diabetes communities to mature and embrace one another instead of ostracizing and battling.  It sounds altruistic, but we're not talking about t-shirts here.  This is about a disease, a serious one, that we live with every day.  And while we rally behind all these different organizations, we need to remember - never, ever forget this - that we are really rallying behind one another as a community of diabetics, regardless of whose newsletter we receive or whose network we have a username in.

The "industry" of diabetes continues to grow, especially as more and more people are diagnosed every day.  But we can't lose sight of the most important aspect of these communities and organizations:  Support.   And I value the support I get from you guys here on the blog, outside in your blogs, in-person at dinners and events, and all over the internet and the Real World as a whole.

We are all living with diabetes.  Standing together does far more than walking alone. 

September 10, 2008

Diabetes For The Day: Third Edition.

I've said it before, but I must say it again:  my co-workers are a rare breed.  They are funny, brilliant, and they actually care about making a difference in the lives of people with diabetes.  Another co-worker took the Diabetes For The Day challenge, and wrote about what it was like to test all day and wear the newest version of the "faux pump."  (This one was a definite upgrade from the Kool-aid box of yester-post.  We used a Freestyle flash meter as "the pump" and taped an infusion set, sans needle, to the back of it.)  Here's her take on a day with diabetes.

Meter, with infusion set attached, serves as a pump for our experiment.

Kerri:  You wore a “pump” and tested your blood sugar throughout your day with diabetes.  How did you feel about these devices?

Co-Worker:  At first I thought it was kind of fun to know what my blood sugar was, but after maybe the second prick, the novelty wore off. It hurt and seeing my numbers go up and down freaked me out. The pump was a huge pain. At work it wasn’t embarrassing but outside of the office, I felt like everyone saw it and wondered about me.

Kerri:  You wore the pump all day and overnight.  Was it comfortable?  How was sleeping with something attached?  Showering?  Was it difficult to dress for?  Did you almost drop it into the toilet at any point?  ;)  

CW:  It was relatively comfortable, comfortable enough that I would forget about it until I caught the tube on something and felt the yank on my “infusion point”. I was nervous about sleeping with it since I don’t own pajama bottoms with pockets but I was able to tuck it under my pillow. I slept fine but woke up with the pump halfway across the bed. I wore pants with pockets the day I had my pump so I didn’t have to worry about where I would stick it. However, I wear a lot of dresses and I could see that being a big pain. I didn’t drop it in the toilet but only because I was paranoid that I would.

The infusion set, without the needle inserted.
My co-workers put up with a lot from me, and they even wear fake pumps to help them understand.

Kerri:  Did physical evidence of diabetes (i.e. wearing the pump) make you feel self-conscious?

CW:  At work, I felt normal, even proud of what I was doing. However, the second I left, I felt awkward, especially when a friend nearly pulled it out and I had to explain what it was and what I was doing. 

Kerri:  How did testing your blood sugar affect the way you thought about food?

CW:  It made me aware of how many carbs I eat and that it is probably contributing to the fact that my blood sugar was all over the place. It also made me less likely to snack because I wanted to avoid testing.  I remember thinking, "A piece of candy is already in my mouth before I think about testing. Did I just mess up? Man, this is annoying. Diabetes sucks."

Kerri:  Did you find the blood sugar testing to be painful?  How comfortable were you with the process?

CW:  After the first or second time, I started to really wince every time I had to test. The sharp pain only lasts a moment but it made my fingers sensitive and bruised. I felt pretty comfortable with the process because I’ve tested before and I’m not afraid of blood or needles.

Kerri:  How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow?


CW:  My blood glucose numbers made me feel anxious. I was like a roller coaster, relatively high and then a few hours later, relatively low. If I hadn’t had Kerri around to reassure me, I would have freaked out.  After a bagel with cream cheese and an iced coffee with Splenda, two hours later I was at 141. I panicked. 141, that’s bad! (Right, except you have a pancreas, give it a second woman). Kerri assured me that I was fine. 

(Editor's note:  Her blood sugars hit highs of 140 mg/dl after a high carb lunch.  So "high" by her standards was a little different than my highs.)

Kerri:  Do you feel as though you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?

CW:  I still don’t think I have a clue what it must be like. I did it for one day. I didn’t change my diet, I didn’t have to take action when my numbers went out of their normal range. I can’t imagine having to test every day. Given that experience, I would rather not know any more.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW:  It made me appreciate my health tremendously. That my body functions and regulates things on its own is a blessing most people don’t take notice of.

Kerri:  Do you think other people who are close to diabetes, but aren’t diabetic themselves, should spend a day as a diabetic?


CW:  I think everyone should.

Kerri:  Anything else you want to add?


CW:  Kerri is pretty awesome. (Editor's note:  YAY!)  And diabetes sucks.  (Editor again:  Word.)

September 08, 2008

Code Word - "Shoot Up."

Code word:  Shoot up!We know we have a special language - it's been confirmed in several editions of dTOES - and almost all of us in this community recognize the different terms.

But sometimes, those terms drop from the mouths of our friends, and the sound always amazes me.

Like yesterday morning, I was having a marathon phone conversation with Batman, and she mentioned that she told one of her co-workers about me having diabetes.  "I was like, yeah, Kerri is a type 1 and she wears an insulin pump ..." and she kept talking but the phrase "a type 1" stuck in my head.  Batman and I don't talk about diabetes much, but she's one of my closest friends and this language has become part of her vernacular almost by osmosis. 

It's my diabetes and my disease to manage, but my closest friends and family members are so tuned in to it that they don't even notice anymore.  Needles in my purse are par for the course.  Looking at me and casually mentioning, "Ker, your wire is out," happens all the time.  "Whoa, that'll empty out a pump," after seeing a huge dessert delivered to a table.  Smooshed granola bars and stashes of juice boxes have found their way into everyone's glove compartments, and I'm not even sure they realize it.  Numbers like 98 and 112 become amusing - "Hey, that's like a perfect blood sugar!" - and people's mentions of "juvenile diabetes" are quickly corrected as "Yeah, they used to call it that but now it's type 1 diabetes." 

"Oh my gosh, that looks delicious  You think like 40 grams of carbs?"
"Dude, let's go in the water.  Throw your pump in the cooler!"
"We've got everything we need for the hike:  water bottle, sunscreen, and sunscreen." 

They "get it," but the best part is that they don't realize how much they've "gotten it."  Their level of understanding is so intrinsic and instinctive that they barely notice. 

I rely on these people so much.   My meter gives me blood sugar results and my pump delivers life-sustaining insulin, but my emotional health is nurtured and cared for by my outstanding support team.  It blows my mind to think about how many people are really needed to keep me healthy.  My endocrinolgist and my primary care physician monitior my physiological progress and keep me steeped in information.  My ob/gyn keeps tabs on my reproductive system and helps me prepare my body for baby.  My retinologist watches out for those pesky eye issues.

But there's so much more than just the doctors with initials after their names.  There's my mom and dad remind me that regardless of how old I become, I'm still their daughter and still their worry.  My brother and sister, who know how to support without smothering.  My close friends, who make sure my life is as free as theirs, but just in case, they keep juice at the ready.  And my husband, who loves me in sickness and in health, not letting diabetes define our relationship - or us.

"Oh, the food's here.  Time to shoot up."  

That's a phrase only a diabetic, or a person who cares for a diabetic, would understand.

August 08, 2008

My Glucose Meter Talks To Me.

I spoke with my meter about whether or not he's comfortable talking on camera.  After some cajoling, Meter decided he was ready for his close-up.  He wasn't happy about the nose, and he was a little frustrated that cars kept driving by as we were taping, but overall he was pleased to share his perspectives with the diabetes community.

My Glucose Meter Talks To Me.

Coffee?  Yes, it's making me do strange things.  Why do you ask?

August 06, 2008

CWD: Jay Hewitt.

Photo credit to JayHewitt.comRole models are crucial when dealing with a chronic illness, and the CWD conference wasn't short on it's share of role models.  From session leaders like Nicole Johnson to the parents who take care of their children with diabetes, heroes were everywhere.  The keynote speaker at the banquet was Jay Hewitt, and he was diagnosed with type 1 when he was 24 years old. 

His speech was nothing short of inspirational.  Aside from the fact that he is in top physical condition (not to mention pretty damn handsome) and well-spoken, Jay said some things that resonated to my very core. 

"You are not alone," he said, striding across the stage and smiling down at the group of kids who were looking up at him.  "All of your friends here are doing the same thing.  I checked my blood sugar before I walked out here on stage so I wouldn't forget my own name."

He talked about his Ironman competitions, saying "I don't forget that I have diabetes, but I forget that other athletes don't."  This struck a chord in me, and made me value this diabetes community even more.  I have the comfort of people who really understand, both in my personal life and on the Internet, and sometimes I forget that other people don't have a good grasp on how diabetes really affects our lives.  (I wrote about this very concept in last month's Generation D.)   

Jay encouraged the kids to set goals and take control of their lives.  "Make the bad things that happen to you the best thing that happened to you.  Seek failure.  Think about failing.  Set goals that have failure potential.  Failure is not a bad thing.  If you've never failed, you aren't trying hard enough." 

"People ask me, 'Why do you do this?'  I do this for the finish line.  You have to earn your finish line.  You don't earn your finish line on race day - you earn it when no one's watching."

I thought about what we, as people with diabetes, do every day.  We test when we aren't reminded.  We take our insulin not because we're nagged but because we want to be healthy.  We seek out information and talk with our doctors and do the best we damn can, even when no one's watching.  This journey with diabetes isn't for show and isn't for accolades.  It's for life.

Role models are important for kids with diabetes.  They're important for adults with diabetes, too.  Thank you, Jay Hewitt, for being someone I can look up to. 

July 28, 2008

CWD: My First Time.

My diabetes greeting card.Up until last week, I had never been to a CWD event before.  I had heard about them through the diabetes community, and I knew that many of the parents who were reading my blog were members of the CWD forums.

Now I know why people are so into CWD.  It's like coming home.

These people get it.  I've said that before about my best friends, who do their best to understand the subtleties of diabetes, and about my wonderful co-workers, who go to great lengths to know what a real "dLife" might be like. But the parents and children at the CWD conference are the ones on the front line, the folks who are living with this disease every single day, either as the diabetic themself or the caregiver of a PWD.

The CWD Friends for Life conference in Orlando is filled with parents who care.  With kids who boop beep boop and shunk and who know the carb content in their favorite breakfast cereal.  With grandparents who can proudly program a pump, or siblings who know how to treat their brother or sister's low blood sugar.

It's also filled with some of the diabetes medical community's finest, with Fran Kaufman, Bruce  Buckingham, Richard Rubin, and Barbara Anderson among the faculty.  I attended several focus groups about diabetes and pre-pregnancy planning, CGM use, and the artificial pancreas.  (The groups deserve their own posts, so more on those later in the week.)  I also had a chance to meet with some of d-blogging's most friendly faces, like Manny from TuDiabetes and Sara from Moments of Wonderful

The first focus group I attended was about Diabetes and the Web, which has people talking about websites they frequent for their diabetes care.  A little girl sitting in front of me, about 8 years old and with an insulin pump clipped to her shorts, said "I visit dLife to find recipes I can eat."  My heart swelled with pride. 

They asked us to envision cards we'd receive from our endocrinologists or CDEs.  "What kind of card would you want to receive from your doctor?"  Even though the group was dominated by children, there were several adults (myself and Manny included) who grabbed for the crayons with vigor.  

The front of my card read:  "Do you have diabetes?"

Inside:  "You are still YOU."

After sharing our cards with the group, the leader asked when we'd want to receive these cards.  On our diagnosis anniversary?  After we have an A1c done?  When we're feeling frustrated?

"I'd take these cards anytime.  Randomly, monthly ... daily."  I said. 

A father in the group laughed.  "Me, too." 

I've said it before and I'm sticking with it:  Diabetes doesn't define me, but it helps explain me.  And attending this conference drove that point home.  I was one of many, united by a common medical bond, but I was still me.  A pump in my pocket, a meter in my bag, and two decades of diabetes under my belt - but I was still me.  And I wasn't alone.

Thanks for the warm welcome, CWD. 

(I have a Flickr set of the conference online now - feel free to poke through if you have time.  More on the conference to come!)

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July 16, 2008

Body Image.

What fits.Beauty benchmarks seem to be measured in what size pants you fit into and what designer hand bag you have draped over your rail-thin arm. 

This is the biggest bunch of crap I have ever heard.  In my life.

There's a lot of body image problems in our society.  Women are shown almost-unattainable media images and are encouraged - expected? - to achieve that look.  As a girl with diabetes and part of a family of curvier people, whittling my body down to that socially mandated size isn't easy ... and wasn't accomplished.  Life with diabetes puts a huge emphasis on food, making me unable to eat just a raisin for lunch.  Instead, I ate in accordance with the then-peaking of my insulin and tried to keep my weight, and my diabetes, under control.  This was difficult at times.

I was never a "thin" adult.  I've always had more of an athletic build than that of a runway model.  As a kid, I was scrawny, but once puberty hit, my body took on womanly curves and held fast to them.  I never felt shapely or feminine - instead, I felt fat. In college, I lived with six other girls (six until me?) and they were all teeny little things.  They had thin arms and thin legs and they shared clothes with one another, but I couldn't get in on that scene because I was about two sizes bigger than all of them.  If they were wearing size 4 pants, I was in an 8.  I always felt a bit bigger, a bit more awkward, and very shy about my body. Despite whether or not I looked as overweight as I felt, my mind was entrenched in thoughts that were self-conscious.  I was very unfair to myself, just like many other women are.  It sucks to feel bad about yourself.

Diabetes challenges my health, but it sometimes offers up a healthy perspective.  It took me several years to really come to terms with the fact that my body needs to have different priorities.  Going to the gym has become less about slimming down my stomach and more about improving my cardiovascular health, lowering my A1C, and reducing body fat so that I can make better use of my injected insulin.  It couldn't be about fitting into a smaller dress size because it needed to be about being healthier every day.

I'm not going to be teeny.  I will not be the girl who appears to be challenged by every breeze that blows through.  My body will be strong and curvy and ornamented by various medical devices, like a diabetic Christmas tree.  It's taken me a long time to achieve a level of confidence in how I look and how I feel about myself.  But I see myself now and realize that I don't look much different than I did in high school or in college.   I just feel different.  I feel like the numbers that matter aren't the ones on the scale or sewn into the tag on my skirt, but instead the ones stored in my meter. 

I feel happy, and that looks better on me than any stitch of clothing I own.

July 03, 2008

Diabetes For The Day.

Working in a diabetes company means understanding the culture and responsibilities of a person with diabetes.  This is easy for me, because I'm a person with diabetes.  But not everyone at work is living with diabetes.  My fellow employees work with diabetes every, but they don't live with it. 

People at work have taken a very active interest in becoming more familiar with the diabetes lifestyle - more than just understanding the "facts" of this disease.  They ask questions about the pump, or different insulins, or what a CGM does.  They ask how things "feel."  One of my co-workers decided to have "diabetes for the day," which included him testing his blood sugar several times and wearing a pump infusion set (minus the cannula - just stuck to his abdomen for "the feel" of it) attached to a makeshift "pump."  He spent the day thinking about carbohydrate intake, blood sugar results, and the constant presence of a device, in efforts to better understand the community he's trying to help.  Here's his feedback:

Kerri:  How did testing your blood sugar affect the way you thought about food?

Co-Worker: 
I'd love to say that I'm a changed person and that I look at the world through different eyes having worn the shoes of someone with diabetes for a day.  Truthfully I think it was the inconvenience pain of testing that caused the greatest hesitation and re-jigging  for me.   The event that caught me most off guard was when I returned home from work and passed up having a cookie before dinner.  My inner dialog went something like,  "Mmm cookies.  Wait, I'd have to test first.  Kerri said I had to test before eating anything.  Hmm.  I'm going to be eating dinner in an hour so I'd probably have to test twice.  BUT.  If I have it with dinner, I can test just once ... I think I'll wait."

I have to say, all those fake sugars [note from Kerri - he's talking about artificial sweeteners] are really yucky and drinking mostly plain water is no fun.   Give me my plain sugar in my coffee.  If I had to inject insulin (saline) I think it might have really changed the way I thought about food because it would have forced me to do more calculations and understand what I was putting into my body (both the food and the insulin).  With just testing, I only had to make simple yes/no decisions.  Maybe next time I'll get wired up for a pump.  Shooting actual syringes saline ... am I getting paid to do this?

Kerri:  Did you ever feel inconvenienced by the presence of the meter or the "pump?"  How so?

CW: 
Having the meter/pump on my belt wasn't too conspicuous as I think it looked a lot like a geeky cell phone belt clip.  (And I'm pretty geeky.)  However, I did almost drop it into the toilet once.  Unlike a cellphone, it's wired/tubed to me which created a bit of a juggling act and not one you're likely to see at the circus.  Thankfully all my years of playing frisbee came in handy and I was able to prevent a very embarrassing accident.  (Since it was just a meter it wouldn't have been too costly.)

I also think that if I wasn't at a place where we talk about diabetes everyday, I might have been a bit more self-conscious.

Kerri:  How did the blood glucose numbers make you feel?  Did you associate any "guilt" to a higher number?  Did any of your results make you raise an eyebrow?

CW:
  Since I knew that my body could "handle" the swings I wasn't too worried and thus not too guilty.  (I had pizza for lunch and pasta for dinner ... and two cookies.  Something that I don't think would be part of a typical menu for someone who was managing their BG.)  I did have some pretty high swings and it did make me realize that keeping your BG within an acceptable range is not a passive act that can be programmed like a thermostat and left on auto-pilot.  There's a constant feedback loop that occurs and I don't think a CGM talking to a pump would be able to easily and reliably handle the delicate balance.  (And that's coming from a programmer.)

Kerri:  Do you feel as though  you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?


CW: 
I think what I experienced is just the tip of the proverbial iceberg.  I was forced to stop and think a few times, but I didn't have to pay the "penalty" of being careless and I knew in the morning it would all be over.  Sort of like playing with tasers without the batteries.  "Don't fake taser me, Bro!" 

I am a bit curious as to what a high and low are like.  Is it similar to being hungover?  Like having a bad flu?  Is it worse than a papercut between the fingers?  (I really hate paper cuts.  How can something so small hurt so much?  I'll inject saline before getting a papercut.)  The insulin pump is still very intriguing to me.  Can you feel the insulin going in?  Can you "feel" your BSL/energy change?

No amount of simulation will ever help me understand what it's like to not be able to just disconnect.  There is no vacation from diabetes.  It doesn't sleep when you sleep.  I can't even imagine that.  Even as I type this, the concept is so foreign to me.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW: 
I've been very fortunate and have been very healthy all my life.  I have my scars and stories, but overall I can't complain.  I don't think the experiment changed how I thought of my own health.  I think I appreciate how amazing the human body is to keep everything working properly, but I don't think I'll change any of my habits as a result of the experiment.  Don't get me wrong.  I'll continue to watch my weight and try to eat healthy food.  (I haven't been to a fast food joint, except to use the bathroom, in over 15 years.)   But it's about my general health and well being, and not specifically as a way to prevent type 2 diabetes.

The experience will stay with me longer than the lancet marks on my fingers, but I would not classify it as life-altering.  Something well worth the time and I'd recommend that other participate in the experiment.

June 03, 2008

Diabetes On My Wedding Day.

Yesterday I wrote about my wedding, focusing on the parts that meant the most to me:  the man I love, our families and friends, the church service, saying "I do," and dancing ourselves silly at the reception.

But diabetes was a part of my wedding day.  We did our best to keep it quiet and unnoticed, though, using several tricky methods.  I'm like a diabetes wedding magician ... sort of.

First things first:  the dress.  Wearing an insulin pump is the easiest and least intrusive way for me to take my insulin, and I wasn't about to go off the pump just for the sake of fashion.  My solution?  Design a pocket to hold my insulin pump, hidden in my wedding dress.  I spoke with the seamstress at Ye Olde Bridal Shoppe and she and I designed something that left the pump accessible, yet hidden.

Insulin pump hidden in the wedding dress

Even if you were looking for it, the pump pocket was almost impossible to find.  Hidden along the seam of my wedding gown, it was held shut with a small piece of velcro.

Reaching into the pocket.

The hole cut in the seam was just big enough to fit my hand into, so I could reach for the pump.

Pulling the pump from my pocket

The hole was big enough for the pump to be pulled through. 

Wedding day bolusing

And once it was free, I could make whatever adjustments I needed and then slip the pump back into its pocket.

Insulin pump hidden in pocket.

The pocket itself was underneath the main fabric of the dress, attached to the petticoat.  It was sized to be about half an inch bigger than my insulin pump, leaving room for my hands to reach in and access the pump.  We stuck a safety pin to the top of the pocket so that when I reached in, I could feel around quickly for the pin and know exactly where the top of the pocket was located.  This made pump retrieval and replacement very easy.

Concealed!

The tubing itself went from the top of the pump, through a hole cut into the petticoat, and attached to the infusion site on my right thigh.  I had to plan ahead of time where my infusion set would be located so the pocket could be properly situated.

And during the entire course of my wedding, no one had any clue that I was wearing my insulin pump in my wedding dress.  Even my friends who know about it couldn't find it unless I pointed it out.  I felt empowered and like a secret agent ... only the bridal version.  

So insulin pump:  check.  And I had a few other tricks up my sleeve.  Like the flowers carried by my maid of honor:

Flowers with low blood sugar backup treater

After speaking with the florist, she devised a small pocket in the ribbon of NBF's bouquet.  This pocket could hold a life saver (as pictured) or even a tube of cake gel.  As I stood at the altar, I felt safe knowing that NBF had a quick dose of sugar at the ready, if I needed it. 

Diabetes, on the whole, didn't affect my day enough to matter.  I danced, ate cake, and experienced a wild array of emotions.  But there were a few moments when it required some attention.  Like after the ceremony at the church, when I tested and realized my blood sugar had cruised up from 156 mg/dl pre-ceremony to a whopping 380 mg/dl afterwards.  (Nerves - they hit me right in the A1c.)  Before the ceremony, I was running on the high end, cresting up around 160 - 180 mg/dl and holding steady.  And during the reception, I was too excited to eat much, so I let my numbers run higher there, too, to compensate for all the dancing. 

I did have a pretty aggressive low blood sugar just before our first dance, but thanks to my fast-as-lightning maid of honor, a glass of orange juice from the bar held me steady as we were announced on the dance floor as Mr. and Mrs. Christopher and Kerri Sparling. 

"I'm a little low," I admitted to Chris as the opening bars to "The Luckiest" played from the speakers.  He held me close and gave me a smile.

"You'll be fine.  Just focus on me.  As far as I can tell, there's no one else in this room but you." 

You may have had your moments, Diabetes, but my wedding day was mine. 

June 02, 2008

Mr. and Mrs. Sparling.

Photo courtesy of Erick Browne Photography.  All rights reserved.The night before my wedding, NBF and Batman holed up in a hotel room with me, keeping me company and aiming to keep me sort of sane. 

"What if I fall on my face while walking down the aisle?  You guys know me - this is sort of likely."

"You won't fall on your face, Kerri."  Batman stuck her tongue between her teeth as she helped to touch up my nail polish.

"I could.  This is me we're talking about here.  I know I'm marrying the right guy and I know I love him, but I'm scared to death I'm going to take a digger in the middle of the church."

"You.  Will.  Be.  Fine."

I fell asleep with a racing, panicked mind and my nerves all bundled up. 

But the next morning, I woke up to bright spring sunshine streaming in through the window and a feeling of serenity.

"I'm getting married.  Today!"

NBF was throwing her clothes into her bag.  "You ready, future Mrs. Sparling?"

I grinned at her.  No more nerves.  I was a tumble of excitement and unexpected calm.  "Let's roll."

The morning cruised by on fast forward.  We stopped for iced coffee.  We filled NBF's car with sequined shoes, hair curling irons, make up bags, and bridesmaid dresses.  And since it was nine o'clock on the morning of my wedding, of course we blared "Baby Got Back" and sang along as loudly as we could.

We met up with my mother, my cousins, and the fine ladies in my bridal party at my aunt's house, where we spent the morning drinking coffee, doing our make up, and having our hair coifed by The Fabulous Liz.  Even though everyone was twittering about and fussing over different details, the world still had this warm, calm center to it.  The whole morning was a whirlwind, ending with my mother helping me into my beautiful , ivory-colored wedding gown and all of us scurrying into the white stretch limo outside of the house.

In a blink, we were at the church.  My bridesmaids guided me down a long basement stairway so I could enter the doorway at the bottom floor of the church, keeping me from being spied by my handsome groom.  Everything was moving so quickly - suddenly I found myself at my father's arm.

"It's time.  Are you ready?"

I nodded.  And the music swelled.

Every moment of our wedding is a crisp and fine-edged memory in my mind.  I remember seeing my college roommates in the church pews.  I remember my mother's face smiling at me as I walked by.  I remember seeing Chris as he stood by the altar and how my whole heart ached with happiness.  I remember our flower girl and ring bearer, nervously grinning as they walked down the aisle.  I remember my MOH's face as she adjusted the train of my wedding dress.  I remember taking his hand and promising to love him and cherish him for the rest of my life.  I remember him taking mine, vowing to love me in sickness and in health, just as he does now. 

And I remember how "I do" melted like cotton candy in my mouth.

"I now pronounce you husband and wife.  Go ahead and kiss your bride."

We kissed.  "We're married!"  We laughed.  We posed for pictures.  We rode in the limo by ourselves and drank champagne and fell in love once more.  We walked in to the reception hall as Mr. and Mrs. Christopher Sparling.  We danced our first dance to "The Luckiest."  We listened as his best man and my maid of honor toasted to our love.  We ate delicious food and cut red velvet cake with butter cream frosting.  We watched as my nephew did his seven-year-old version of break dancing by himself on the dance floor.  We took more pictures, only plenty of these were damn silly. 

With my insulin pump tucked safely and quietly in a pocket at my hip, we celebrated the biggest day of our lives surrounded by our families, friends, and loved ones.  I am so, so blessed to be the bride of this man who keeps me safe and makes me feel loved and takes care of me in a way that keeps my mother from worrying. 

My wedding day was the proudest moment of my life.  I am so happy to be his wife.

(And I did not fall on my face walking down the aisle.  That, my friends, is certainly saying something.)

March 11, 2008

A Good Tune.

I even own some Yanni.  I know...For as far back as I can remember, music has been such a crucial part of my little world.  When I was a little kid (we're talking like six or seven years old), I can distinctly remember listening to my mom's Elton John tapes on my Fisher Price tape player.  I also remember buying my first tape cassette when I was 10 - Beethoven's 9th Symphony.  I played that tape over and over until it wore out and the actual cassette tape warped.

In my mind, my life has a constant soundtrack.  If I trip and fall over my own feet while walking downtown (often right in front of a coffee shop window where people are sitting and, of course, looking out), I hear the sounds of a stumbling tuba, a la Droopy Dog.  When Chris proposed on the balcony in St. John, I heard the swells of some wildly romantic Italian aria.  Even as I sit at work and watch the emails file in first thing in the morning, "Flight of the Bumblebee" runs frantically through my head.

I LOVE live music and have seen plenty of awesome bands in person - The Frames, U2, Muse, 311, Jewel, Radiohead, Gomez, Damien Rice, Stereolab, and The Beastie Boys.  There's something so intense about hearing these musicians perform their songs LIVE, in front of my face, streaming right into my ears and dipping directly into my soul.  Gets me fired up, makes me feel alive.

There are definitive genres of music that are called into play when I'm trying to write, as well.  Regardless of whether or not I'm writing something upbeat or emotionally evocative, I always head to the same kinds of tunes:  moody sorts of music that is someone was going to guess my personality type by listening to my iTunes, they'd think I'm itching to off myself.  Radiohead, Damien Rice, The Frames (especially the new stuff from the "Once" soundtrack and tracks from "The Swell Season"), Nick Drake, Tori Amos ... and soundtracks.  Like "Schindler's List" and "Braveheart" and "Last of the Mohicans." 

I know - pretty damn moody for someone who spend the majority of her day laughing.  Looking at my iTunes library makes me look all emo and crap.  ;)

I spend the majority of my day plugged in to headphones or listening through the speakers, doing my job, and enjoying tunes.  Over the last few months, I've been listening to the same music, but I rec'd a mix cd from Carey a few bit ago that introduced a whole new cache of bands into my playlist.  Now I'm itching for some new songs and new bands - it's like I need a musical spring cleaning, shuffling out the old stuff I don't really listen to anymore (sorry, Snow Patrol) and bringing in the new blood. 

So, O Wise Internet - what are you listening to these days?  Anything worth sharing?  Can I usher in the Spring with your playlist?   

March 07, 2008

Early Weekend.

This morning I had the pleasure of sitting down for a great breakfast with Mollie Singer and her mom, Jackie.  (Yes, her sister is Jackie as well.)  Mollie blogs over at CureMoll and has been type 1 since she was four years old.

We sat down for coffee and eggs at Pershing Square (right near Grand Central) and gabbed about college, relationships, and our experiences growing up with diabetes.  There's something very unique about sitting down with another blogging diabetic and have that instant connection.  Mollie's mom reminded me so much of my own mother, talking candidly about how an upbeat attitude can make all the difference.  And Mollie, with her bright smile, was just as sweet and positive as I had anticipated.

To that end, we laughed, joked, and had a good time.  Maybe too good a time, because when Mollie's mother excused herself to the ladies' room, this guy came over to our table.

"Excuse me, but my friends and I have a bet that you aren't from around here."

Did I hear him right?  "What's that?"

"That you aren't from New York.  Are you?"

Mollie shook her head.  "I'm from Vegas."

"Me?  I'm from Rhode Island."

The guy laughed.  "So definitely not from New York.  I knew it!  You seemed to fresh-faced and happy to be from the city."

I couldn't help but laugh right back.  "You're telling me that we seem too happy to be from New York?  That we're too smiley?  Well sir, I take that as a high compliment then."

Kerri and Mollie - not locals!  :)

Cheers to you, Mollie, for being another happy face visiting NYC!! 

I'm off to get an early start on the weekend - have a good one!

February 15, 2008

The Stress Management Six.

The Friday Six:  February 15, 2008 editionStress management has been on the top of my list for the last few months, and I've finally made it the priority it deserves.  I know that all of this cortisol coursing around in my body isn't good on several levels (contributing to higher blood pressure, hyperglycemia, impaired cognitive function ... wait, what was I saying?) and I can't let this go on any longer without making considerable efforts to change.

So, I'm taking on the Stress Management Six.  My ways of dealing with the chaos that comes along with ... life, it seems.  

1.  Better Manage My Time.  Between work, personal projects, and the wedding, I often feel overwhelmed by the tasks that need to be done and instead of tackling the "to do" list, I end up intimidating and spinning my wheels.  I need to really isolate the things that need to be done and prioritize them appropriately.  Do I really need to update my Twitter status every day?  No.  But do I need to make sure that the wedding invite list is completed by next week?  Yes.  Knowing what truly takes priority and not assigning myself too many tasks can help make better use of my time.

2.  Sleep.  Oh blessed sleep.  I have a tendency to stay up too late, throwing off my whole mindset for the next day.  More sleep is pivotal to achieving a lowered stress level.  So I'm buying new pillows.  And mushing my face into them for at least 7 hours a night for starters, aiming for 8 once I get closer to the wedding.  Part of getting more sleep also means cutting waaaaaay back on the caffeine.  I'm used to be a four-cup-a-dayer, but I'm trying to cut back.  Over the last month, I've worked my way down to two cups, and this week it has only been one cup of tea a day.  I'll eventually switch to decaf tea, I think.  Weaning off the caffeine will help lower stress, help me sleep, and keep my brain from imploding due to the jitters.  (I'm like Tweek from South Park when I have too much coffee.)   

3.  Meditation.  After speaking with my doctor this week and describing the anxiety and stress issues I've been wrangling with for a few months, she strongly suggested a meditation class to help keep me centered and help me let go of the things in my life that are tossing me into the spin cycle.  So I'm currently looking for a meditation class near my office or house.  (Which, here in Western CT - aka Soccer Mom Central - shouldn't be that hard.  It's all the rage to sit on a yoga mat and breath deeply these days.) 

4.  Breathing Exercises.  Even if I'm trying my best to avoid stressors, they will still find me.  (They have some kind of honing device, I think.) I need to find ways to deal in the heat of the moment.  I've found some breathing techniques that I can use while I'm, oh, say sitting in traffic, watching the email inbox total climb into the stratosphere, or for those moments when I mash my hand in the bathroom cabinet by accident. 

5.  Disconnect From The Internet.  I spend entirely way too much time on the computer, especially for someone who is completely social and chatty.  It's unnatural for me!  When I am at work, almost all of my day involves the monstrous computer screen (I do so enjoy the WorkMac, though), but I need to make more of a habit of disconnecting when I go home at night.  Usually, my evening includes the gym, dinner, and then more computer work.  Chris and I are resolving to spend less time online in the evening and more time hanging out.  Work can't suffer and tasks need to be completed, but being online all day and all night doesn't do much for my stress levels.  I need a freaking break. 

6.  Take A Freaking Break.  Lately, I've been mostly work and not enough play.  ENOUGH OF THAT.  I am young, healthy, and part of a wonderful network of friends and family.  I'm resolving to spend more time with my friends and less time mucking around on work-related items.  Last weekend was nice, spending it exploring a new city.  This weekend, Chris and I are tucking ourselves away into a bed and breakfast - no cell phones, no internet, and no tasks.  And next weekend, I have some fun plans with friends on tap.  Life is going by so quickly these days - I need to take some time to actually enjoy it and make some memories. 

So the plan is way less stress, which should have a positive impact on my diabetes and my overall health in general.  And if that doesn't work, I may have to move permanently into a hut on the side of a mountain.  Only it will have running water.  And a wireless connection.  ;)

Have a stress-free weekend and I'll catch you, all mellow and whatnot, on the flip side.  Yo. 

January 07, 2008

Equal Time.

Equal packets - that match.The coffee machine was whirring to life, and while the water heated, I poked through the little decorative bucket where the packets of Equal are stashed.

In the bucket, there were piles of blue packets, but there were different illustrations printed on each one.  "Do Your Drink Justice," "Power to the Packet," and "Ban the Bland."  There were a few different strawberry-themed logos, too. 

I've written before about my slight OCD tendencies.  The eight sips of juice.  My woofer-sniffing moments (oh how embarrassing, why am I bringing that up again?).  And I also need for my packets of sugar substitute to match.  The pictures have to match, both packets have to be right-side up, and facing the same way.  I cannot function any other way.  It's not certifiably OCD, but it's a borderline trait.  And until last week, no one had noticed.  Not even Chris.

So as my coffee was brewing, and not thinking I was being watched, I picked rabidly through the packets until I found two that matched (throwing back ones that didn't as though they were fish that were too small), lined them up, and ripped them open.

"What are you doing?"  Oh shit.  Co-worker saw me flitting through the bucket in search of matching packets.

"Oh, nothing."  The blush crept up my face without my permission.  "Okay, I was looking for matching packets."

"What?"  He laughed and put his mug on the countertop while I flustered.

"The packets.  Of Equal.  They have to match.  I have to use matching packet thingies." 

He raised an eyebrow.

"It's normal.  It's totally normal."  My coffee spluttered to a finish and I grabbed my mug, grateful for something to do with my hands.  

"It's very normal, Kerri.  Completely."  He was polite enough to keep the laughter in his eyes, but I could see the tug of a smirk.

I laughed, too.  I get the joke. 

But these OCD tendencies are just little snapshots of me trying to control things.  Sometimes my blood sugars aren't reigned in very well, and I compensate by making long lists of work-to-dos that calm my nerves.  I'll hit the gym every weeknight because I can control my attendance.  My checkbook is balanced to the very penny, to keep tight tabs on my controllable finances.  I'm constantly micro-managing other aspects of my life in efforts to compensate for what I can't control in total. 

(I'm also known to micro-manage my diabetes, hence my meeting with the Minimed rep this afternoon.  Real-time blood sugars in efforts to best control my body's natural inclination to fail me.  Control, control, control.)

Sometimes it feels like trying to spin the universe in a different direction. 

SUM Tags: , , , , ,

December 20, 2007

Tune Up.

I spend a lot of time thinking about health and fitness.  

There's my job, where I am often found perusing diabetes-related press releases, checking out the latest websites about endocrine health and wellness, and writing about what day-to-day life with diabetes is all about. 

Then there's my handsome fiance, who has spent time as a personal trainer, writes for various fitness venues (including AOL), eats a regimented, healthy diet, and has a physique that is evidence of time well-spent at the gym.

Oh, and then there is the whole "white wedding dress" thing, where everyone will be looking at me in a few months on a (hopefully sunny) May afternoon.  Not to mention my disease, which I manage with an insulin pump, my meter, attempts at healthy eating, and regular exercise.

So I'm constantly checking out different websites about health and fitness, as the themes touch so many different parts of my life.  My magazine collection is a mish-mash of Women's Health, Shape, and Modern Bride.  These pages are dog-eared and occasionally ripped out and pinned to my cube wall or my office bulletin board. 

Never mind the daily webcrawl I make, bouncing from my daily check of Women's Health online for some daily tips and inspirations, FitDay to continue on with my goal of keeping a food journal for a full month, Slashfood for some foodie snippets.  Recently, I've been checking out iVillage's Your Total Health site, Healthbolt, and Lift Magazine for some newer viewpoints. 

It's all bit-sized bits of health information, which fit into my multi-tasking sort of lifestyle.  But the part that I'm having trouble with is cutting down the workout to a sensible size.  Fitness doesn't appear to come in teeny bits for me.  I need to work out long and hard in order to see results, constantly fighting the uphill battle of treating low blood sugars and the demanding schedule of any fully employed twenty-something.  (Scratch that - the schedule of anyone is demanding, ranging from kids to senior citizens to circus clowns.)  I need to buckle down and make efforts to really reach my goals.  Bit of a tune-up.

A few months ago, I decided I needed to change my workout.  My legs were killing me.  But, as with anything else, my body adjusted and I needed to switch things up again.  I now have a few different methods of attack:  keeping a food journal, avoiding all holiday sweets until the New Year (it's like the Pre-New Year's Resolution), and making some awkward attempts at bringing running into my routine. 

Oh how I hate to run.  I feel awkward and like a great, traipsing gazelle.  But over the last two weeks, I've been trying to work in a circuit of running to help me tone up a bit more before the wedding.  (Five months!)  A combination of weight training and running was constantly touted by all those fitness sites as a killer fat loss program.  So I'm trying it.  First, I did five minutes running, five walking.  Then seven on, five off.  Last night, I did twelve on, five off. 

And I watched as my blood sugar fell from 160 (started the whole workout at 200 mg/dl) to 68 I only wear two sneakers, unlike my little pal here.mg/dl.  When my workout changes, my diabetes management methods need to change, too.  Hopefully I'll find a way to trot with a bit more grace.  And hopefully my body will shift into shape by the time I'm donning my white dress for my big walk down the aisle.

Oh hell, maybe I'll run.  Just to prove a point.  ;)

December 18, 2007

Armed.

When I got home from the gym last night, I ripped out that belly site with relish.  (And a small bit of ketchup, as it bled a teeny bit and that makes me wonder if I had nicked something and if that had contributed to excess pain.  But I've digressed.  Again.) 

After showering, I slid a little IV prep on the back of my left arm, where I took daily injections for so long, and held the circular, blue Quick-Serter against my arm.  Leaving no time for anticipation, I hit the buttons on the side and plunged the needle into my skin.  No real pain, not much impact, and when I pulled the Quick-Serter back, I exposed a neatly nested circle of white on the back of my arm, with the blue needle sticking out of it. 

"Gotcha now," I muttered. 

Pulled out the blue needle and fixed primed the set with 0.3u of Humalog.  No burn.  I clipped the pump to my yoga pants.  It felt weird to have the tubing all "up north" instead of the southern hemisphere of my body.  I laced the tubing underneath the side of my sports bra and kept it along the side of my body.  This worked for the most part, aside from the fact that it tickled a bit on the underside of my arm.

I pulled on a black t-shirt and surveyed the scene.  I could see the set bulging out a little bit underneath my arm, but since it was on the back, it seemed barely noticeable.  I fell asleep more aware of the fact that the pump wasn't on my leg, instead of hyper-aware of the set on my arm.

This morning, not much different.  Showering proved to be no issue, as the shower poof didn't come into direct contact with the site (it does when I'm using my leg -- I'm obsessive about shaving).  I got dressed in a pink sweater and black skirt and snaked the pump tubing underneath the side panel of my bra and along the side of my body again, coming to a rest tucked into the top of my skirt.

Pros to wearing it on my arm are that the area has been virtually untouched for the last four years, save for the rare injection.  It's up and out of the way, so using the bathroom isn't a tricky "hey, did I just skim the site with my pants?" excursion.  It's not creating a bulge that I can see without lifting my arm a little bit, and once the tubing is secured under my bra, it doesn't budge.

Cons to this site are that dressing/undressing is a bit tricky, as there's plenty of braided tubing to contend with.  It aches a teeny bit, but nothing too dissimilar from a thigh site and nothing even close to the ache of an abdomen site.  It's a bit tricky to connect/disconnect because I can't really see it, but since I don't usually look when I reconnect, I can do it by feel.  The main con is that I can't extend the tubing to my sock and hide my pump there, so I'm experimenting with different "above-the-belt" hiding spots.  Today it's tucked inside my tights, against my hipbone.

So, thanks to your encouragement, I think I have a new spot to rotate my infusion sets to.  And it wasn't too scary!  Now it's your turn to try something new.  :)

December 04, 2007

Paint By Numbers.

Carb management is a paint-by-numbers for me.I looked into the bottom of my purse and saw the Cliff bar and a pack of gum.  "46 grams of carbohydrate."

I poured a cup of coffee this morning and added a little cream and Equal.  As I stirred the contents of the cup and chatted with co-workers, I thought "0.2u of insulin for the 2 grams of carbohydrate."  I eye-balled the bagels being offered up and watched as one morphed into a whole-wheat "8" and another into a sesame-seed covered "0."  80 grams of carbs.

The kiwi fruit, sliced and captured in a tupperware container, looked ripe and grass-green through the plastic window.  It would be a delicious morning snack.  Ten grams of carbs.

Nineteen carbs in that yogurt, five grams in a fistful of almonds, fifteen in that slice of whole-grain toast.  Convert how many units of insulin that I need to cover X amount of carbs.  Base these values on previously calculated insulin-to-carbohydrate ratios.  Make sure you take recent and future activity levels into account, in addition to factoring in some cushion time for the insulin to work.

It's a lot of math for this intrinsic English major to handle.  If I keep my brain tuned into the numbers only, I'm admittedly rattled and overwhelmed. 

Instead, I picture the culinary world as one, big paint-by-numbers picture.  Carbohydrate content calls out a value and insulin is my paint.  Some days the portraits are just breath taking, a sea of yellows and blues and a smattering of greens, blending together and keeping my blood sugar numbers from spiraling out of range. 

It's tough to keep my hand steady some days, especially now with all the holiday treats on every countertop, but I'm doing my best to stay within the lines.

November 28, 2007

Operation WillPower.

It actually tasted good.  I swear.I spent the majority of yesterday beneath a mountain of blankets on the couch, anchored on either side by a fluffy cat.  Miserable and sick, yet capable of impressive levels of boredom, I watched daytime TV until my brain started to melt a little bit.

Itching to alleviate the boredom, I gathered myself together and exhibited my only smidge of culinary prowess:  cooking soup.

I'm not exactly known for my skills in the kitchen.  I can make a delicious breakfast, a bang-up cup of tea, and the occasional salad excursion.  But my true (and only) talent lies in the soup pot.  I make a tasty soup.  Using a book I had picked up at The Strand bookstore in NYC - Soup for Every Body.  Boasting a selection of low-carb and high-protein soups, complete with illustrations, this book was perfect for Chris and I and our picky little eating habits.

And it was only six bucks.  Good deal, this.  AND the soup ended up being delicious.  Chris claimed it's "restaurant quality."  Let me assure you, this is not a compliment often offered up, so I did a little sicky-jig of happiness.

I've been thinking about eating habits a lot lately, especially with the holidays coming and my will power on a bit of a hiatus.  As I wrote in my dLife column this month, the whole "special occasion" caveat during the holidays is tricky for me.  With so many parties and events, it's easy for me to succumb to "Oh, just this one time," and have that piece of cake/glass of wine/forkful of creme brulee.   Next thing I know, I'm indulging at every turn and my jeans don't fit as well as they did a month ago.

Never one to react to a problem, I'm trying to take a more proactive approach to this holiday season.  Enter:  Operation WillPower.  (Similar to Operation Thwart.)  Now that I'm two days into the antibiotics for strep and well on my way to being fully mended, I need to take control of my eating habits and get my act together. 

Back to heavy workouts.  Back to low-carb meals.  Back to paying attention to all the bits and pieces of diabetes management and readying my body for that wedding dress.  (Which, by the way, is being delivered in January and I'll be having my first fittings.  In less than two months.  Holy crap.)

So long, delicious treats!  I miss you already. 

Commence Operation WP.

November 25, 2007

And the Cats Survived.

Pretty red leaves that lined the shores of the lake.

There was Fondue Night with my college roommates, dipping whatever we could find into cheese and then chocolate fondue (no, not at the same time), drinking wine, and gossiping like fools.

There was Thanksgiving with friends and family, spending time with our closest loved ones.

We had a delicious dinner at The Cheesecake Factory in the city and then explored Providence with the new camera, snapping shots of the Statehouse and the cityscape from an empty park at midnight.

A visit to my mother's house brought us on an impromptu hike through the woods and snapping pictures at the shore of the lake.

The loooo-ong drive back down 95, back to our home and back to work this week.  We're sleepy, inundated with emails, and toting suitcases crammed with half-folded laundry.

And even though they were all puffy-tailed, bored, and mewing when we came back home tonight, the cats survived.

November 22, 2007

Every Morsel.

From my family to my friends, to the stupid cats, to a career I enjoy, to the support of people (some of whom I've never even met), to opportunities I've earned, to failures I've learned from, to the man I cannot wait to call my husband ... I am thankful for every morsel of my life.

And here's hoping those morsels are low-carb, because today is going to be a challenge in numbers management.  :) 

Happy Thanksgiving, everyone!

November 16, 2007

One Moment.

We were talking about meeting with Christel and how long she and I have both had diabetes.  Over twenty years for both of us.  Over twenty years for so many of us.

We don't talk much about diabetes at home.  Sure, there's plenty of talk about the blog and work and different projects, but the disease itself is usually held at arm's length.  We understand how serious it is but can't face life with such a furrowed brow all the time.  It's just a press release.  It's just a URL.  It's just all these people blogging about different lives with the same disease.

There are moments I forget I'm living with it, too. 

"What about clinical trials?"  "What about generic insulin?"  "What about that guy with the thing in that country who cured the mouse?"  "What about helping people understand the differences between type 1 and type 2?"  "What about medical insurance?"  "We should think about a [insert project here] or maybe contacting some people for a [insert another idea here]."

And he's so excited about the possibilities for making a difference.  His eyes are shining in that way that reflects true hope and effortless love, in that way unfamiliar with what twenty-one years feels like, because he has barely known three.  He wants to make a difference.  And I do, too.  But tonight, I just wanted to make dinner.

He stops.We're in this together.  All of us.

"I'm sort of preaching to the choir, aren't I?"

I nod and smile.

"I'm with you, Chris.  I'm just sort of tired of singing."

My face feels hot.  My eyes tear up.  I'm not done fighting and not done advocating and not done trying to make a difference, but I'm feeling so tired at this moment, and so uninspired. 

"I'm with you, for all of this.  Forever, you know."

His words reach right into my heart, folding close around the raw parts of me that don't ever sleep.  I crumble in, held close against the man who will take care of me now, while I'm healthy, and who will care for me should body start to fail.  It feels intense and overwhelming.  And I cry, surprising myself with ragged breaths and burning tears. 

I forget I sometimes feel this way, all lost and tumble-dried.

I have a good cry.  He holds me and I feel better.  I'm grateful for my support system, both in my home, in the folds of my family, and in the wilds of the internet.  Love and support makes every shot less painful, every number less judgmental, every hurdle more surmountable.

I suddenly feel inspired again.

November 15, 2007

More Than Diabetes.

We met up at Les Halles for dinner.  Four people, meeting up for the first of many times.  She greeted Chris with a huge smile and a hug. 

It was more than diabetes. 

Sure, she understood completely when I mentioned a botched infusion set or that sticky mouth feeling when blood sugars are swarming out of control.  We talked about technology and "old school diabetes" and what how things have changed over the last twenty-plus years.  Conversations about how diabetes influenced romantic relationships, or financial decisions, or career aspirations passed easily between us. 

She knew when I said "I don't think about a cure," that I was actually saying, "I can't think about it."  She's been diabetic for almost 25 years.  She knows exactly what I mean.

But after the talk about diabetes was tapering, we still had more to talk about.  Marriage.  Family, both being a part of one and starting our own.  Perspectives on writing.  Gossipy bits.  And she made me laugh - oh good Lord the girl is funny.  Our friendship is born from a diabetes connection but one that is rooted in so much more than that.  Talking with her was like talking with someone I grew up with, who understood where I was coming from and where I hoped to go.

So when Christel and her husband, John, came to visit NYC, it was more than diabetes.  It wasn't about comparing pumps or blood sugars or tales from our islets.  We had dinner with two people who felt like old friends, only she and I just happened to both bolus before the crème brulée was served. 

It was more than diabetes.

Kerri and Christel.

October 22, 2007

Walk in My Shoes.

I walked with the October sunshine warm against my back.

Kerri, Nicole, and Shannon.

I walked with Shannon, whose son knows what I know.  She shared moments with my mother that made me feel like my mother was less alone now, too.  I walked with Nicole, who shared orange slices with me as we treated simultaneous lows.  (I also wore the hat of a viking warrior princess, but that's an entirely different post.)  These were my fellow bloggers, my friends with diabetes, folding me into arms that know what it's like to have fallen down the well of a low.

I walked past toddlers in their strollers who offered their chubby fingertips to their parents for a quick blood sugar check.  I saw children holding hands with their parents, passing glucose tabs between their fingers.  I saw a group of teenagers and scanned their hips and their hands for evidence of their diagnosis, but I couldn't tell which one had it.  I walked past children with bright blue pumps clipped to their bodies, smiles even brighter.

I walked with my aunts and my cousins, who have always made sure there is diet soda at the family picnics and a sugar-free dessert after a holiday meal.  I walked with one of my best friends, who has learned about diabetes in the same breath that she's learned about my favorite bands.  I walked with the support of my other best friend, who is as quick to make me laugh as she is to count the carbs.  I walked with my fiance's sister, who by just showing up makes me feel like she understands.  I walked with my future niece, who knows I wear my medicine on my hip, but that I will also play teddy bears with her. 

I walked with my fiance, who loves me not because of or despite this disease, but simply because he loves me.

I walked with my mother, who was there the day I was diagnosed and who has lived with this disease as long as I have, only she feels the sting of a high without needing insulin, the tears of a low without needing juice. 

I walked proudly, surrounded by friends and family both new and old, taking steps towards acceptance, towards progress, towards a cure.

Team SUM, 2007.

Team Six Until Me.  2007 edition.

(Missing from photo:  My aunts, cousins, Jeff, and Superman.)

August 09, 2007

What Counts.

"This is our new normal, our new way of dealing with life."Team dLife - JDRF Walk to Cure Diabetes

"Diabetes is a burden we didn't bargain for..."

"These moments are beautiful because we're not alone..."

"A cure."

Snippets of conversations stuck to the wallpaper in the dining room of the country club.  Adults spoke into the microphone about the diagnosis of their loved ones, shuffling the papers in their hands to keep the tears from falling out onto them. 

It's tough to sit in a room filled with the parents of diabetic children, as a "diabetic child" myself.  I feel so close, yet so oddly removed from their lives.  We were all gathered there as part of the JDRF Walk Team Captain kick-off luncheon, bringing together our teams and banding together in efforts to raise awareness of diabetes and to soldier on towards a cure.

Parents held back tears that they seem to have forgotten they were capable of.  There was a video presentation that told the story of one mother, answering her daughter's question of "Will I have this forever?"  I wondered if I had ever asked my mother that question.

I'm captaining a JDRF walk team for dLife this fall, walking to raise awareness and money towards research for a cure.  I'm excited and honored to be leading this event for my company, proud to be a part of something so positive.

At the table next to me, two small children sat with their mom, coloring and paying scattered attention to the speakers.  I wondered which one was diabetic - the little one with the flouncy pink dress or the older girl with eyes wise beyond her years and pigtails?

I pulled my meter out of my purse and absently tested my blood sugar underneath the lip of the table, pressing my fingertip to my mouth without thinking - 152 mg/dl.  Pump retrieved from my pocket, I bolused a quick unit to correct me back down and slipped the pump back into my skirt.

I caught her looking at me, her wise eyes wide as she realized I was diabetic,  just like her. 

I smiled and gave her a quick wave.

She waved back, pigtails bouncing and smile bright.

This walk means so many different things- raising awareness and doing our best to fund research towards a cure.  Corporate sponsorships, walk t-shirts, keynote speakers, and fundraising ideas.  Walking together on a fall day with the same hope.

Next month marks 21 years with diabetes, and while technology has drastically improved how I treat my disease, it has not cured any of us.  I become more pragmatic with each test strip, each A1c result, each milestone.  I forget how to think of a future without this disease.  I forget how my parents feel sometimes. 

I forget what it's like to want a cure.

But I still remember how to hope

July 17, 2007

An Interview with My Friend, Demarco.

The Interviews at SUM

My friend Demarco from Australia has returned for another visit at Six Until Me, and this time he brought his new hypo-dog friend Chino!  Fresh from Australia's Paws for Diabetics, Chino and Demarco are taking care of each other and having some fun.  Demarco and his mom, Kate, spent some time with me and gave me a glimpse into their diabetes lives. 

Kerri:    Can you tell me about when you were diagnosed with diabetes?

Demarco:  I was only 23 months when I was diagnosed with Type 1 Diabetes. I don't remember much about it, but some of the bad things I will never forget. I had these terrible pains in my legs and tummy, and because I couldn't tell Mum, she couldn't help me. I just screamed at her, the only times I stopped screaming was for water. I also remember getting my nappy changed a lot. I remember Mum taking me to a new doctor, and he did a prick on my toe. A little after that, my Mum screamed, and cried and she couldn't even walk to the car. The doctor had to take her to the car and my Dad had to drive. She was shaking a lot too. The strange thing was that I stopped crying and screaming for the first time in days because I finally knew that SHE knew that there was something seriously wrong with me, and she was going to get me help. She hugged me tight, and I clutched on to her long red hair, because it made me feel safe. I remember 4 men with stethoscopes trying to hold me down to put a huge needle in my arm, and looking at my Mum and wondering why she wasn't stopping them. Whenever I hear the song 'Tomorrow', from the musical, Annie, I think of hospital too. My Mum used to sing it to me when I had to have an injection or a fingerprick, but instead of singing, 'The sun will come out, tomorrow,' she changed the word to ' Demarco.'  I remember there was lot  of Winnie the Pooh and Tigger stuff given to me. I have a strange feeling when I see Winnie the Pooh now.

Kerri:    I know you’ve had some very cool experiences as a diabetes advocate – can you tell me Demarco and his hypo-dog pal, Chino.about your favorite one?

Demarco:  Since I have been fundraising, I have now made in total $5500 for JDRF Australia. The best thing that has ever happened from being an advocate is that a lady from Sydney rang my Mum and asked if  I would like to go an event called 'Kids in the House', where 100 other kids with Type 1 got together to tell politicians just how much we all need a cure. It was a pretty serious event, but the best thing was that I got to play basketball with the Australian Sydney Olympians at the Australian Institute of Sport.  I met one player, also with Type 1 Diabetes. He told me that I was the bravest kid he ever met.(I felt my ears go red.)  He said when he was diagnosed at 7, he was horrible to his parents, he used to steal lollies out of the cupboard and lie about his readings. He even said he hated himself. It wasn't 'til he became good at basketball that he realised that Diabetes could stop him at nothing. He changed his life completely. He shook my hand, and introduced me to the team. They lifted me up high in the air, and one guy tried to slam dunk me! The other cool thing was John Howard walked past our table, and I said to Mum' Wow! He looks like George Costanza from Seinfeld!!) I thought world leaders would be big and powerful. Mr. Howard looks like a grandad with caterpillar eyebrows!!! He DOES know a lot about Type 1 Diabetes though, and he is very passionate about finding us a cure. So I guess he is a pretty decent guy then. He’s just very small!

Kerri:  You and your mom are a good team and you work together to manage your diabetes.  Do you have other friends with diabetes?

Demarco:  I have met lots of people with Type 1 Diabetes. When older people find out that I am a diabetic, they sometimes say that I will grow out of it, or I should cut back on sugar. This hurts my feelings,but I am getting better with it now. I have my best American friend, Brendon, who is my penfriend, and I have met lots of kids who are a bit older than me who are great to talk to. There is nothing like talking to someone who has diabetes, because they walk in your shoes. My mum is a mentor to a girl named Jelly, and she is probably my best girl friend. She goes to high school, but we are on the same insulin, and we both feel the same way about having diabetes. I really like her a lot. She is really, really pretty too.

Kerri:    Being diabetic means there will be some low blood sugars sometimes.  I heard that you recently added a new friend to your diabetes team – Chino!  Can you tell me about your new friend?

Demarco:  Chino is a 4 month old pure bred whippet. He is the best thing that has ever happened Demarco and Chino have a cuddle.to me. He goes everywhere with me. The law says that he can go everywhere except an operating theatre of a restaurant kitchen. We have cool ID Cards with our pictures on them. He has picked up so many hypos before they turn dangerous. He has a few different ways of alerting. He will either nudge my chin and whine like he is crying, he will  howl like a dingo, he will jump up on Mum and start biting her jewelry or her collar, or he will bite my fingers, and won't stop when I say 'no.' If he does any of these things, we test, and each time, I have had a problem with my blood sugar that I wouldn’t have known about until much later when I started feeling sick. I have had less hypos. It's such a good feeling not to feel that way all the time. I am a happier boy now! Chino came to me because my Mum got in contact with a lady from a company called 'Paws for Diabetics.' She has matched up dogs with people all over Australia and their lives have improved, as well as having a new friend! When he gets older, he will be even better at his job. His sense of smell is 500 times better than ours, so he is able to detect when my sugar levels are changing through sweat. He has all the same rights as a guide dog. As he is so friendly, he has to do a lot of training so that when we are out, he is totally focused only on me. I can't imagine life without him now. I used to only like cats, and there were three breeds that can detect hypo attacks. A Chinese Crested (it has no fur except a tuft on his head-a little creepy) A Shetland Sheepdog, (too big and lots of fur to look after) and that left a whippet. I kept thinking that he would look like the dog off the Simpsons, Santa's Little Helper! He doesn't though. He is beautiful, and he cares for me so much.

Kerri:    Aside from doing things to raise awareness about diabetes, what other things do you like to do? 

Demarco:  I really am into Yugi-Oh Collector Cards, I guess because I can speak a bit of Japanese, and I like Anime cartoons. I am also doing pretty well at karate now that I have swapped insulin. (I am on Novorapid and Levemir). I love hanging out with my Mum, she is a good teacher, and she sure knows how to look after people with Diabetes! I just love talking to people, Kerri. They don't have to be six, they can be 30, or 80 or 13, just as long as they have a good heart and treat themselves and me with respect. I want to be a good swimmer too, so when it gets warm again, I will start swimming again. (When I was on Protophane, I couldn't do many sports. I was always hypo even after loads of carbs and less insulin.)

Kerri:    Demarco, if you could ride around in a hot-air balloon, what would you want to fly over? 
 
Demarco:  If I got to go in a Hot Air Balloon, I would probably wanna check out Heaven, just to say hello to my Uncle Paul, and my Grandmother. I would ask my uncle if he could use some heaven magic to keep my eyes and kidneys well. I would want to say hi to Jesus and the angels too. Oh, and the Artic Circle, so that I could spy on Santa, to see what he's got in store for me this Xmas. (I have been pretty good for the first half of the year!)

Kerri:  Thanks, Demarco!  Enjoy your new friend!

July 16, 2007

Hope, Dreams, and Reality - A Mom's Perspective.

Mom posts again.  :)Once again, my mother is making a cameo appearance on Six Until Me.  She has a permanent "right to post" on this blog, and it's always an honor when she voices her perspectives.  Thanks, Mom, for another "Mother's Perspective."

"So my daughter, Kerri, is getting married.

Wow!

When Kerri was first diagnosed as a little girl and having almost no knowledge of Type I Diabetes, the thought flew through my mind one day that maybe a wedding was not in her future. What did I know then? Not much! Through the years of experiencing the growing pains of a child with diabetes and educating myself, I knew on an intellectual level that it was indeed possible.

However, as a parent, I was always waiting for the “other shoe to drop” so to speak. Things go wrong, things happen. I would tell myself not to think “too” much or I would make her and myself crazy. After all, it was paramount in my mind that she be a normal child doing normal things and not being held back in anyway, shape or form because of her diabetes. (Not that she would allowed herself to be held back – she takes after her Grammie, independent!).  But, it was always there in the back of my mind.

I am so happy that she has found Chris who is a wonderful person who accepts the total package of Kerri Lynn Morrone as she accepts him. He watches out for her, not unlike I used to.   (Editor's Note:  Mom, you still do look out for me.)  She is very capable of taking care of herself but all the mothers and fathers out there reading this will know exactly what I mean. We could all use a second pair of eyes watching our children, it just makes us feel better. It makes them safer.

It will be a glorious celebration of love and life next May. Diabetes is a part of Kerri’s life and of her family that loves her. But, I will try to stop waiting for “the other shoe to drop” because no one knows what the future will hold and worrying is wasted energy. When there is something to worry about, then I will worry.

I have three wonderful kids, two beautiful grandchildren that are so dear to me, and I look forward to having more of the latter. (No pressure or anything!!)

-- Kerri’s Mom"

To catch up on my mom's other cameos, you can find them here and here.  Enjoy! 

July 09, 2007

And the Award Goes To...

I will be loading up the rafting pictures tonight (including the one of the raft guide yelling at me to stay tough), but in the meantime, I've had the honor of receiving two very nice bloggy awards.

Thinking Blogger Award.Amy Mercer over at Dreaming of Water awarded me the Thinking Blogger Award.  She chose a handful of chronic illness blogs to highlight.  Since this is a diabetes-focused blog, I'm chosing to deviate from diabetes and highlight some of my favorite non-diabetes blogs:

1.  Aprigliano.  He makes me laugh, he's tech-savvy, and he's married to one of the only people who can make me laugh with a mere syllable. 

2.  M.O.M.  Monica paints pictures with her words that have the most vibrant colors.  Her perspectives always make me think.  And she tolerates the fact that cartoons are based on my life. 

3.  Breathe.  This blogger, new to the blogosphere, finds words for the moments that render others mute.  The moments that Lynn chooses to capture are beautiful and poignant.Rolling out the red carpet for my fellow bloggers.

4.  The Full Stop.  Nothing makes me happier than reading Kieran's musings.  His musical talent is undeniable and he quips about in ways that bring me great joy.  He makes me think as well as makes me laugh.

5.  Que Sera Sera.  I've been reading this blogger for about a year now and she makes me snicker at the most mundane things.  Definitely a blog to check out.

Here are the rules, should any of these bloggers choose to accept their mission to share their thinking bloggers of choice.  If the bloggers choose to participate, please make sure to pass the rules on to the next Thinking Blogs you tag:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think.

2. Link to this post so that people can easily find the exact origin of the meme.

3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote (here is an alternative silver version if gold doesn’t fit your blog).

This award was began by Ilker Yoldas at The Thinking Blog. The mission is to create a linky thinky trail (my ridiculous phrase, not theirs, as they sound much brighter when they talk) to spread the word about great blogs. 

Rockin!And Julia at Major Bedhead has awarded me a Rockin' Girl Blogger award.  (YAY!)  Dude, I am so passing this one around the dBlogosphere.  My nominees are:

Birdie at Aiming for Grace.  She hits her target every time.  I am always impressed by her writing.

Shannon at Mom Wants a Cure because she makes me laugh, cry, and fear being poked on Facebook at all times.

and Jill at Navigum.  Diabetes doesn't appear to define her, either, and her stories about tofu pups and bizarre life happenings make her blog a must-read.

Thanks for thinking of me!  Cheers to the blogosphere!

Visitors since November 7, 2005