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

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

Posted by Kerri Morrone Sparling at 10:21 AM | Permalink | Comments (5) | TrackBacks (0)

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

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

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

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

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

Fear?  No thanks.  Give me hope any day.

Posted by Kerri Morrone Sparling at 10:47 AM | Permalink | Comments (33) | TrackBacks (0)

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 10:17 AM | Permalink | Comments (4) | TrackBacks (0)

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

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

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

Posted by Kerri Morrone Sparling at 10:30 AM | Permalink | Comments (19) | TrackBacks (0)

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

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

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

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

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

Posted by Kerri Morrone Sparling at 10:33 AM | Permalink | Comments (8) | TrackBacks (0)

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

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

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

This is not a trend I want sticking.

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

This is not a trend I want sticking, either.  

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

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

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

Posted by Kerri Morrone Sparling at 02:10 PM | Permalink | Comments (21) | TrackBacks (0)

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

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 08:42 AM | Permalink | Comments (25) | TrackBacks (0)

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

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

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

Thanks in advance for all of your feedback!!

Posted by Kerri Morrone Sparling at 09:05 AM | Permalink | TrackBacks (0)

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

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

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

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

Bernard, Amy, Kerri, and Scotty J!!

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

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

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

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

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

Posted by Kerri Morrone Sparling at 10:41 AM | Permalink | Comments (10) | TrackBacks (0)

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

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 11:34 AM | Permalink | Comments (7) | TrackBacks (0)

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

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

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

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

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

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

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

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

Oxygen mask, you know?

Posted by Kerri Morrone Sparling at 09:26 AM | Permalink | Comments (24) | TrackBacks (0)

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

It's The Suck.

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

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

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

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

"36 mg/dl"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 11:01 AM | Permalink | Comments (25) | TrackBacks (0)

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 02:10 PM | Permalink | Comments (12) | TrackBacks (0)

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

DING!!!  Game on.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Game Over ... until 5 am.  :)

Posted by Kerri Morrone Sparling at 10:43 AM | Permalink | Comments (29) | TrackBacks (0)

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

Here's what I know so far:

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 10:22 AM | Permalink | Comments (65) | TrackBacks (0)

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

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

*   *   *

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

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

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

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

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

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

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

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

Make sure.

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

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

Posted by Kerri Morrone Sparling at 09:08 AM | Permalink | Comments (11) | TrackBacks (0)

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

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

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

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

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

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

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

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

Posted by Kerri Morrone Sparling at 09:09 AM | Permalink | Comments (33) | TrackBacks (0)

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

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

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

Oh, but we haven't.  

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

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

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

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

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

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

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

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

Twice.

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

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

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

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

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

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

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

Raise your voice.

Posted by Kerri Morrone Sparling at 09:23 AM | Permalink | Comments (44) | TrackBacks (0)

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! 

Posted by Kerri Morrone Sparling at 09:57 AM | Permalink | Comments (32) | TrackBacks (0)

Yesterday, the mail arrived.  There were catalogs for clothes (mmmm, can't wait until May!), letters from friends, the crappy bills that keep arriving even though we didn't forward them to our new address, and oh yeah, that one bill from my mail order pharmacy.

For a thousand dollars.

Dated January 30, 2009. 

So, being the rational and patient woman that I always am, I ripped up the envelope it came in, cursing under my breath like my temperamental buddy, Yosemite Sam.  Punctuated each tear of the paper with "fricka-frakin' insurance bill dagnabit ..."

And then I called the mail order pharmacy company.

"Thank you for calling Byram Health Care.  Your call is important to us."

That was enough to start pushing me a little closer to flipping out, even though it was just a recording.  My call is important?  How important is my business with you?  You're billing me over a YEAR after whatever happened, happened.  After entering my account number and social security number and date of birth and favorite color and pressing "pound, star, pound" to confirm that yes, John was indeed my favorite Beatle, I finally got a human being on the phone.

The woman who answered was very nice, and it's not her problem that I was receiving a bill for something from January of LAST YEAR.  So I was as patient as I could be.

"I just received a bill, dated January 30th, 2009, stating that I owe over a thousand dollars for pump supplies.  Can you help me solve this problem?"

She put my information into the system and pulled up my record.  After a quick discussion about the invoice number, she launched into a speech that sounded so well-rehearsed, it scared me.

"This claim was under review as of June 2009, but spans the course of the entire calendar year for 2009.  It has just come out of review and is now being billed to you, as you see there on your invoice.  Your insurance company has denied this claim stating that these diabetes supplies aren't covered under your DME clause and therefore you are responsible for the remaining balance for these insulin pump reservoirs.  In the event that you disagree with this statement, you'll need to contact your insurer and have them contact us to resubmit the claim."

"Oh hell yes, I disagree.  So I need to call the insurance company and pass the buck back to them?"

"Yes.  Have them contact us with their resubmission of the claim."

"Okay, but confirm this for me - this isn't my problem.  This is an issue between you guys and the insurer, right?"

"That is most likely the case, but you'll need to talk to your insurer."

So I called Oxford Health.  And their guy told me that Byram had submitted the claim to Oxford with incorrect billing codes, forcing Oxford to deny the claims for these supplies.

"Even though you guys approved these items for over three years?  And it's not like anything changed?  So it's just the billing code that was different, and that's not even my fault, yet I'm receiving the bill?"

The guy from Oxford confirmed.  "You need to call Byram back and tell them that they need to resubmit the bills to us with this billing code (and he read off some series of numbers to me, that I feverishly wrote down and then promptly doodled cats around - I was fired up, but still easily amused), and then that should start fixing this problem."

"Okay, so let me confirm.  This isn't my fault.  Or my problem.  I'm not on anyone's 'bad list,' and this is an issue with you guys and the mail order pharmacy, right?"

"That's correct, Mrs. Sparling."

"Fantastic.  You've been very nice.  I hope we never have to speak again."

And then I called the customer care center at Byram, one more time.  And this is where I almost got into my car and drove to wherever Byram is located, so I could just find this girl who answered the phone and shove broccoli spears up her stupid nose.

After explaining the basics, and after this new girl brought up my account, I said the following:  "This bill I'm looking at isn't really my problem.  That's been made clear to me by speaking with your associate and then the rep at Oxford.  So can you help me out with this billing issue?  I've been told it's a matter of coding, and not an actual insurance denial?"

And this girl actually said this to me.  "Um, so you want me to resubmit this with a new code?"  Big, big sigh.  "I have to resubmit these to your insurance company?  That's going to take a long time."

I snapped.  BSparl kicked indignantly, egging me on.  "You are upset because you have to resubmit the bill because YOU guys screwed up the billing codes in the first place?  You are giving me attitude - you are really out of line with that, by the way - because you have to do your job, only correctly this time?  Honestly?  I'm looking at a bill for $1000 that is the result of a billing code error, not my error.  And the billing codes are from your side of things.  So this is your error.  I am not paying this bill just so you can avoid doing your job.  Right?  I mean, you have to see where I'm coming from."

Big sigh again.  "I'll have to spend tomorrow resubmitting your claims.  You'll need to call back tomorrow."

"That's it?  So you're on this?  And again, this isn't my problem, right?  I don't need to do anything?"

"No.  You don't need to do aaaaaanything."  Drawing out the A-sound, like I was the one not doing my job.

"Great.  Thank you very much for resubmitting those.  And hopefully tomorrow we'll be all set."  

Co-pays are one thing.  Insurance premiums are another.  But being billed a thousand dollars because someone entered the wrong code and now is griping about fixing the error?  That's a surefire way to piss off a pregnant lady. ;)

Posted by Kerri Morrone Sparling at 09:12 AM | Permalink | Comments (50) | TrackBacks (0)

Disclosure is the responsibility of the blogger, and we’re under more scrutiny these days than ever before.   But I’ve never had an issue with transparency here – actually, I think I tell you guys way more than you probably want to know.  You knew when I started and stopped working for dLife, you know what publications I’m contributing to regularly, and you know about my relationship with Dexcom.  This blog is about my life with diabetes, and even though I know this is my life that I’ve decided to share, it’s important to me that people know my professional relationships with diabetes companies.  I’d want to know that information if I were reading this blog, too.

So (long winded intro to this post, eh?), I wanted to continue to keep you guys in the loop.  I’ve decided to sign a sponsorship agreement with the Animas Corporation. This whole thing started a few months ago, when I was exploring the idea of a new insulin pump and was excited about the Animas/Dexcom integration (no, I don’t have a CLUE when that’s happening, but I’m mighty hopeful it does go through in 2010).  But I’m still under my current pump warranty, so my hands were tied.  Reps from Animas reached out, one thing lead to another, and now I’m working with Animas, not as an employee, but as part of their outreach program that includes country singer George Canyon, LPGA Golfers Kelli Kuehne and Michelle McGann, and former Miss America Nicole Johnson (to name a few).  The program tries to spread the Animas name by working with people who have diabetes who are doing cool things (pregnancy is cool, right?), can inspire others to consider pump therapy, and want to talk honestly about how diabetes impacts their lives.  Bless their hearts for daring to partner with a – gasp! - blogger.  As part of this program, I’ve switched insulin pumps from my Minimed 722 to an Animas OneTouch Ping and am receiving my pump and pump supplies from the company gratis.  (Don’t worry, my doctor is in the loop and my supplies and pump are still a prescribed item.  This agreement doesn’t replace my medical team – just my method of insulin delivery.)

My new insulin pump, showcasing my new mega-basal rates.  :)

Every blogger is biased, but not every blogger discloses their biases.  I’m trying to do right by you guys, as best I can.

So that’s the latest.  As always, if you have concerns about this, please let me know.  I’m happy to answer any questions (but, just like before, my answer might be “Honestly, I have no idea.”).  And, just like before, if Nikon calls, I’m answering without hesitation. 

Posted by Kerri Morrone Sparling at 10:37 AM | Permalink | Comments (48) | TrackBacks (0)

Dear Oprah and Dr. Oz,

Diabetes is very expensive to manage and to treat the complications of, but what comes at an even higher cost is the damage of statements from a doctor, claiming that diabetes is reversible. I was diagnosed as a child, and my type 1 diabetes is not the result of any controllable factors. However, I have many friends who have type 2 diabetes who can make the same claim.

I can't lie - I had a lot of hope about your episode regarding diabetes.  Even though it was billed as "the silent killer" and even though I knew you'd show the darkest side of diabetes-related complications possible to "sensationalize" this disease, I was holding out because I wanted this episode to be accurate. 

Dr. Oz, you are a doctor, and a mouthpiece for the medical community.  I realize you are a cardiologist, not an endocrinologist, so you can't be expected to know everything about every medical condition, but I'm surprised you were chosen as the expert on diabetes.  I understand that doctors are human, as are their patients, and no one expects you to be an expert on every medical condition.  I actually respect doctors who admit that they can do a lot, but can't do everything.  And since you aren't an endocrinologist, I'm not shocked at your casual mentions of the two types of diabetes, not making clear distinctions between the two.  (Actually, I believe it was Oprah (or her husband, Richie Cunningham) who continued to bring up the "type 1 or type 2" question.) 

I was hoping that you take a clinical approach, instead of one that generalizes diabetes. Type 1 diabetes is a very serious disease and shouldn't be put in that "lose weight and you'll save the healthcare system millions" category. You had an opportunity, and a duty, to educate the public about the different kinds of diabetes, and to help people understand what methods of treatment work best.

I was disheartened to see how this show was handled, editorially.  You two started off by saying that diabetes is an epidemic, one that will eventually bankrupt our healthcare system.  After discussing how insulin and glucose work in the body, you then cut to Laureen.  Laureen is 44 years old, on dialysis waiting for her second kidney transplant, and a double amputee.  You zoom in closely on her tears as they fall, as she laments how she has been dealing with diabetes for most of her life and wishes that she took better care of herself when she was young.  

(Back to the studio:  Oprah asks if Laureen was a type 1 or a type 2 diabetic.  Dr. Oz says she was type 1 diabetic.  "She's type 1.  She's not making enough insulin.  Type 1 is genetic."  I'll admit this is one of the first times I've ever heard type 1 and type 2 even mentioned in the same breath in mainstream television.  And then in the next breath:  "Diabetes is an epidemic.")

Why show a type 1 diabetic with serious complications, and then say that diabetes is the fastest growing disease in the country?  You need to specify that diet and exercise, or lack thereof, did not cause Laureen's type 1 diabetes.  Yet you want people to see the horrible effects of type 1 diabetes on her body and then say that a generalized "diabetes" is an epidemic.  Type 1 is not an epidemic.  Type 2 diabetes is.  And thanks to your mishandling of the facts, ignorance now joins the epidemic status as well.

Do you realize how frustrating it can be to live with diabetes, of any kind?  The testing, the injections, the complications, the daily fear of what may happen while you're driving or - worse - what may happen while you sleep?  The physical impact of diabetes is tremendous, as you both illustrated with your jar of glass shards, representing what an excess of sugar in the blood stream can do to blood vessels.

But do you realize how equally frustrating the stigma of diabetes is?  How we are so often viewed as having "brought this on ourselves" or as not working hard enough to prevent complications?  I've written in my blog countless times about the impact of diabetes and guilt, but you wouldn't understand that. You understand ratings.  You understand getting your name out there and having people click on your website ads and tune into your show.  You understand that showing a woman with missing limbs and streaming tears will make people sit on their couches and watch your show.  What you don't understand is how some of us felt, watching from our homes.  Opinions vary on how your show handled diabetes, but for me, personally, I feel like you just blended the worst of both kinds and then barreled into generic advice about generic diabetes symptoms and "remedies." 

Now please don't get me wrong:  I'm grateful for having more of a spotlight on diabetes.  For all the times I've wanted to see diabetes featured on the Oprah show, I feel somewhat guilty for criticizing how your portrayed the disease.  But it's hard for me to disconnect logic (i.e. not everyone has type 1 diabetes so not everyone will understand what information is correct or incorrect about diabetes) from my body's visceral response.  I know that during many points in your show, I felt so frustrated.  I wanted clarity to be delivered to the parts of society that are  unfamiliar with diabetes.  I wanted to have people watch your show and come away thinking, "Wow.  There's more than one type of diabetes?  It's not all about diet and exercise, but there are people who don't have a choice in this diagnosis?"  Instead, I'm afraid that people will continue to think that diabetes is just diabetes, and that there is no distinction between the causes or the treatments.  They'll think that all diabetes is controllable and treatable and potentially reversible.  That it just requires work, and for the diabetic to not be lazy about taking care of themselves. 

If one dollar of funding towards type 1 diabetes research is put back into a potential donor's pocket because they believe, as a result of your words, that all types of diabetes are the same and that all diabetics simply didn't take the measures to "prevent" their disease, this is your burden.

And for those of us with diabetes, we will have to carry the burden that society doesn't deem us "worth curing" because they think we did this to ourselves.

Sincerely,
Kerri Sparling
Type 1 diabetes for 23 years … and counting

NOTE:  To send your comments to Oprah, click this link.

Posted by Kerri Morrone Sparling at 12:05 PM | Permalink | Comments (152) | TrackBacks (0)

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.

Posted by Kerri Morrone Sparling at 10:15 AM | Permalink | Comments (19) | TrackBacks (0)

I wanted to do my part to help get the word out about the DiabetesSisters weekend that's taking place this coming May 22nd and 23rd in Raleigh, North Carolina.  Here are the details:

I love diabetes conferences, and in particular, ones that recognize the different needs of different segments of the diabetes populations.  Women with diabetes come head-to-head with some very unique diabetes-related issues, from periods to pregnancy to emotional hurdles, and having a weekend just for "us" sounds awesome.

I wish this was an event I was able to attend, but I'll hopefully be spending the first few weeks of May adjusting to life with my daughter (!).  If you are going to be in the NC area for that weekend, check out the DiabetesSisters Weekend for Women Conference! 

Posted by Kerri Morrone Sparling at 08:20 AM | Permalink | Comments (8) | TrackBacks (0)

Today, we're traveling to Utah for the Sundance Film Festival.  And yes, I will be photographing and videoing the hell out of the festival, because I am so excited to see how this week plays out for my husband.  But in the meantime, as I board the plane and head off to Park City, I'm looking back to this post from October 2005, where the term "rage bolus" first appeared on SUM. 

(It made me laugh to read this post, because this was pre-dLife, pre-Chris and I getting married, and pre-so much stuff that's in play right now that I almost forgot that I hated my job back when I lived in RI.  And how much I still want to know how many licks it takes to get to the center of a Tootsie Roll pop.)

*   *   *

October 10, 2005:  Bit of a rantish post here. And there's no reason for this other than to vent frustration.

Last night, after I came home from the U2 show in Boston (more on that later), I was a little bit high. Rang in at 212 mg/dl. Okay, no problem. Bolus it up, go to bed. Woke up this morning at 200 mg/dl. Hmmm, no drop in the blood sugar levels. Not to worry, though, because it's a Free Shower - no infusion set - Day due to the fact that it's time to change the infusion set. Primed and inserted a new set with good ol' Charlene. She purred (beeped?) happily and I set about dressing for work.

Arrived at work. Hungry. Devoured one of those sometimes-delicious-but-most-often-just-gritty Kashi Whole Grain Granola bars. Bolused two units to cover, in accordance with the 1:10 ratio. Worked at my boring job for about an hour before realizing that I had already visited the bathroom twice in that time. Hmmm. Not normal. Tested, revealing 281 mg/dl. Whaaaa... I corrected this morning. I bolused for the crappy snack. And now I'm higher than before? Frustrated Kerri. So I Rage Bolus*. I just crank the shit out the pump, knowing full well that I only need about two units to come back down. I lace in 3.5 units. Sit back, satisfied.

Not done yet. I test again, an hour and half later, clocking in at 286 mg/dl. Fan-freaking-tastic. Good thing all that insulin made me higher. Because that makes f-ing sense. So I Rage Bolus again, sending 2 more units coursing through, Frustrated Kerri not really giving a shit that the "active insulin" tally on my pump is enough to cover dinner at Olive Garden.

So it's noon. I've been high all morning. I just changed my infusion set this morning. And I'm angry. I do not want to pull this set only to find that it's perfectly fine and I've wasted yet another expensive pump supply.

I'm riding this out. It's Me against the D. Who will persevere? How high will Kerri allow herself to rise before she pulls the set and starts over? How much Rage Bolusing will eventually catch up with Herself before Kerri bottoms out at 44 mg/dl? How many licks does it indeed take to reach the center of a Tootsie Roll Tootsie Pop? If you say three, you and that f-ing owl can go screw. It at least takes 125. I'm going to find out as soon as my Rage Bolusing catches up with me and I'm Trick or Treating at people's desks here at work.

*Rage Bolusing: Taking an uncalculated amount of insulin to correct a frustrating high bloodsugar reading. Also see: Panic Eating.

Posted by Kerri Morrone Sparling at 08:21 AM | Permalink | Comments (18) | TrackBacks (0)

Okay, so it's not a joke.  And it's not a bar.  But the JDRF, Animas, and DexCom have walked into a momumental agreement in efforts to create an artificial pancreas.

According to the press release, "The Juvenile Diabetes Research Foundation today announced an innovative partnership with Animas Corporation to develop an automated system to help people with type 1 diabetes better control their disease – the first step on the path to what would be among the most revolutionary advancements in treating type 1 diabetes: the development of an artificial pancreas, a fully automated system to dispense insulin to patients based on real-time changes in blood sugar levels."  

Alan Lewis, PhD, President and Chief Executive Officer of JDRF, is quoted in the release as saying, "JDRF will provide $8 million in funding over the next three years for this project, with a target of having a first-generation system ready for regulatory review within the next four or so years.” 

So what exactly would it mean to have an artificial pancreas?  More from the release:  “If successful, the development of this first-generation system would begin the process of automating how people with diabetes manage their blood sugar,” said Alan Lewis, PhD, President and Chief Executive Officer of JDRF.  'Ultimately, an artificial pancreas will deliver insulin as needed, minute-by-minute, throughout the day to maintain blood sugars within a target range.  But even this early system could bring dramatic changes in the quality of life for the 3 million people in the U.S. with type 1 diabetes, beginning to free kids and adults from testing, calculating and treating themselves throughout the day.'”  

Also, "DexCom, Inc., a leading manufacturer of CGM devices, will supply the CGM technology for the system to be developed by JDRF and Animas." 

I think this is a huge step forward for a new way of treating type 1 diabetes.  I've clocked over 204,360 hours with type 1 diabetes since my diagnosis over two decades ago, I've seen so many tremendous technological steps forward in treatment options for type 1.  Home glucose testing machines were "all the rage" when I was diagnosed, and there were only two or three insulin options for injection therapy.  Now, home meters are the norm, there are more insulin options and more insulin delivery options now than ever before, and continuous glucose monitors are part of my regular routine (versus before, if you had mentioned them to me as a kid, I would have thought you were from the moon). 

And now we're talking about an artificial pancreas?  A real one?  One that actually could be used in my lifetime, before I'm too old to care or too sick to benefit from it?  I believe this can happen, and I am so hopeful that these organizations and companies can make this a reality.

A cure is something I don't think much about.  It's something my heart has protectively hardened me against hoping for.  I know that reversing my body's inclination to attack its own islet cells could be a long time in coming.  What I do know is that I've been living with type 1 diabetes for almost my entire life, and I've battled hard to keep my body healthy and strong.  And now, I'm expecting a baby and have even more incentive to stay healthy for my child, so that I can be part of her life for a long, long time.  

If an artificial pancreas can help me minimize highs and lows in my blood sugars, that could help to protect my body from diabetes-related complications.  I could be safer.  My body could feel more "normal."  And my baby has a better chance of having me see her children born some day.

This press release has given me a reason to grin today.  And I'm excited to see how far these organizations can bring us all towards a better life with type 1 diabetes.

Posted by Kerri Morrone Sparling at 11:00 AM | Permalink | Comments (25) | TrackBacks (0)

I'm not the first to mention Zip the Cure (nor do I have the cleverest title - that definitely goes to Saraaaaaaaaaa[no h]).  But like my fellow d-bloggers, I was contact by15 year old Monica Oxenreiter about her type 1 diabetes fundraising project, Zip the Cure. 

it's almost too simple!

"Zip the Cure has just one uncomplicated goal; raise $100 in every zip code for research to find a cure for juvenile diabetes."  One hundred dollars is a good amount of money, but it's not a bank breaker, especially if you get a few $10 donations from friends, coworkers, family members, cats ... you get the picture.  Doesn't take much to reach this goal per zip code.

I talked with Monica by email about her project, and wanted to give her an opportunity to raise her voice about Zip the Cure.  Take it away, Monica!

Kerri:  What's your connection to diabetes? 

Monica: I was diagnosed with Type One Diabetes on July 14, 1994, when I was thirteen months old. My older brother, John, was diagnosed three years later, on March 7, 1998, when he was eight. That means we have had diabetes for a combined total of twenty five years! We were immediately involved with the JDRF Walkathon, and were youth ambassadors. In addition, we were part of the Promise to Remember Me campaign.

Kerri:  What was the spark behind Zip the Cure, and how did you get started?

Monica:  My brother and I were both Pennsylvania delegates to the Children's Congress in 2005. While we were there, we met many people our age, from across the  country, who were dedicated to finding a cure. We wanted to find a similar way to involve people from every state in the search for the cure. Zip the Cure is a national program that provides a fundraising opportunity accessible anywhere in the United States, on a local level. This is a way for everyone to contribute at their own level toward a much larger goal. Diabetes affects people in every zip code across the country; this is a way for people to work together to try to make a difference. We received approval from JDRF as a third-party fundraiser; we then obtained a 501(c) nonprofit status from the IRS and, with the help of John Coryat, developed an interactive map which went live on November 14, 2009. Since then we have sold 91 zip codes in 23 states.

Kerri:   How can other people get involved with Zip the Cure?

Monica: You can visit our website! The best way to get involved is to help spread the word or donate.  As with any grassroots effort, a donation of any amount is combined with many others to make an impact. People can collaborate with their communities to sponsor a zip code if $100 is too much for one individual. We are trying to work together to raise funds for a cure for diabetes.  Individually, the goal we have set may seem overwhelming, but with our efforts combined, it is within our reach.
 
Kerri:  What's your goal with this effort, and what can we, as a diabetes community, do to help?

Moinca: The goal is to raise $4.2 million for type-1 diabetes research, to find a cure. We would really appreciate it if you could sponsor your zip code or help us spread the word to others about our project. It does not matter where you are, because there are zip codes everywhere in the United States. Please visit our website, Zip the Cure, join our Facebook group, or email me if you want more information at monica@zipthecure.com.

Kerri:  Thanks, Monica, for sharing your story, and I'm hoping that you reach your goal!

Posted by Kerri Morrone Sparling at 10:10 AM | Permalink | Comments (9) | TrackBacks (0)

Posted by Kerri Morrone Sparling at 11:05 AM | Permalink | Comments (3) | TrackBacks (0)

Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police - people who don't mean to be second-guessing me or asking me why I'm eating that, but still, they can't help but ask.  Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.

But other times, when I'm at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, "Why are you eating that?" ... I feel completely defeated.  And embarrassed.  Can't a girl have dessert without being questioned?  And when questioned, why isn't my explanation good enough to justify my actions? 

I'd like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny.

There's a difference, in my eyes, between choosing to be a diabetes advocate and being forced to explain myself.  I have no problem explaining to a stranger what the difference between type 1 and type 2 diabetes is, or what this machine on my hip is, or why my purse keeps BEEEEEEP!ing, or why I'm carrying more candy than an Oompa Loompa.  I actually like having these discussions, because I feel like people are only familiar with one kind of diabetes and one linear explanation for "the sugar," and I like knowing that I'm helping to educate them about the different kinds of diabetes, particularly type 1. 

What I don't enjoy is having someone look at me like I'm doing something wrong, just because they are unfamiliar with the ways that my diabetes needs to be managed (or the way I'm choosing to manage it).  I've written about diabetes and guilt before, and my inability to ever be "the perfect diabetic," so this isn't a new gripe.  But what's made me particularly frustrated is how there seems to be this common misconception that "it's only diabetes" and it's okay to pass judgment on my choices.  Diabetes isn't viewed as a serious disease to those outside the bubble of understanding, and complications for a young person with type 1 can thankfully be hard to spot, so maybe diabetes just looks too easy to some people.  Maybe we are just too good at masking how challenging it can be sometimes.

What would my well-meaning diabetes police say if I responded to their comment of "Whoa!  Having pie?  You can't have pie!" with a dissertation:

"Yes, I can have pie.  If I'm willing to go through the necessary motions, you know?  I have type 1 diabetes, and I wear this pump to give myself the insulin hormone that I don't make for myself anymore.  Supplementing all day long!  Unlike type 2 diabetes, which I know you're more familiar with, I don't make any insulin at all, so every meal is a tight balance of blood sugar monitoring, carbohydrate counting, and then dosing my insulin in accordance with the meal I'm about to eat.  Then, after the meal, I'll keep monitoring to make sure that I'm not going too high or too low.  It's about balance, but not about deprivation.  So yes, I can eat this.  And I will eat this.  And so long as I'm able to keep my numbers in check, my body shouldn't rebel after a piece of pie."

The thing is, I've given this explanation before.  Many times.  And I've explained diabetes to so many family members and so many friends (and just as many complete strangers) that it frustrates me endlessly to see that they aren't retaining any of the information.  And not only are they missing what I'm saying, but they're constantly - albeit gently - calling me out for my actions.  It makes me feel like such a crumb, like everyone is watching me while I eat.  (Nothing like that to make you feel paranoid.  Not to mention pregnancy weight gain, adding insult to injury.)  I know they mean well, and I appreciate their concern, but they need to listen to me when I answer them.  And they need to trust me when I give a clear explanation.  I'm not asking them to explain their food choices or exercise decisions or the details of their daily regimen - it's not my business. 

I'm sorry if I seem frustrated, but the scrutiny is making my head and my heart ache.   I don't have a track record of being irresponsible.  I don't exhibit signs of disease ignorance or depression or unawareness.   I'm taking very good care of myself, especially now with the baby growing inside of me and my focus turned to diabetes the majority of my day.  I'm tuned in.  I'm careful.  I'm doing my best.

Yes, I can have the pie.  Next time, I might skip it for reasons all my own.  But whatever my decision, please don't assume you have a right to question it.  Until you are living with type 1 diabetes, you don't understand.  And I'm not expecting you to understand - ask me what you want to ask me.  I'm more than willing to talk to you about this. 

But if you don't have a question, and you only have those comments, I'm just respectfully asking you to be quiet.   Please.  I've had enough.

Posted by Kerri Morrone Sparling at 11:29 AM | Permalink

Happy World Diabetes Day to my friends in the diabetes community!!!

Posted by Kerri Morrone Sparling at 08:30 PM | Permalink | Comments (37) | TrackBacks (0)

Oh, the diabetes interwebs have some things to share ... so here's a few I wanted to make sure I passed on to you guys.

Over the weekend, I saw a sneak peek of the final Making Sense of Diabetes video, brought to us by the Diabetes Hands Foundation.  (But for Gina and I, in the hotel lobby, it was bought to us by Manny and his laptop.)  I have to admit - and these aren't the pregnancy hormones talking - this video brought me to tears.  Not necessarily because it's depressing, but more because it's inspiring.  The people featured in this video are people with diabetes, and they're sharing the intimate details of what their life is like.  I'll admit it, I cried a little.  And Manny and Gina hugged me.  (Whoa, holy digression but bear with me, I'm an emotional mess this morning.  But the point is:  I needed a hug after watching that.)  Enough chatter:  Watch this video.  You'll find inspiration, even if you aren't looking for it.

Also, last night I had the chance to "hang out" with Chris from A Consequence of Hypoglycemia on his podcast, Just Talking.  Admittedly, I thought it would be tough to fill an hour with "just talking," but Chris (iam_spartacus) is cool and keeps the conversation flowing, despite the fact that we've never actually spoken before.  It's an hour's worth of random chatter (including some sound-effect editing over the less than desirable language), touching upon diabetes-centric stuff, the Red Sox/Yankees battle that wages in my own home, #voltron, BSparl, Buried, stupid Siah, and my grandmother's obsession with Orville Redenbacher. (Please excuse the phone that keeps ringing in the background.  It was making me NUTS.)

And Elizabeth Edelman (from Diabetes Daily) has created a diabetes cookbook just in time for the holidays.  It's called Thanksgiving with Diabetes: 17 Lower Carb Recipes Your Family Will Love and it is AWESOME.  The recipes look delicious, the photos are gorgeous, and Elizabeth Edelman is a staple of our diabetes community, so please visit Diabetes Daily and check out this fantastic endeavor. 

That's all I've got.  I'm out!

Posted by Kerri Morrone Sparling at 09:46 AM | Permalink | Comments (5) | TrackBacks (0)

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.

Posted by Kerri Morrone Sparling at 11:39 AM | Permalink | Comments (38) | TrackBacks (0)

I think this video is brilliant, and I'm not just saying that because I adore these two fellas.  George and Scott teamed up to create a Making Sense of Diabetes video for TuDiabetes and they focused on taste ... showing how we, as people with diabetes, don't get to taste much of anything without embarkng on some kind of blood sugar testing, carb calculating, math confusion adventure. 

As I said - brilliant.  These guys raise awareness using humor, but boy does this message resonate. See for yourself:

Posted by Kerri Morrone Sparling at 01:00 PM | Permalink | Comments (14) | TrackBacks (0)

Happy Halloween!  Today, I'm revisiting one of my first columns for Generation D, written back in 2006 about a Halloween experience from when I was in middle school.   (Believe me, it's safer than watching the Halloween video I did last year, before I figured out how to edit and instead rambled on and on and on and ... you get it.) 

*   *   *

More Than Candy and Costumes

Dressing up was not an issue. I wore my silly costumes proudly and they were always homemade. I was a fairy godmother one year. I was a gypsy for about three years running. Another year I was Bo Peep, complete with sheep.

Then one year, I was diabetic.

When the central focus of the holiday is eating candy, what’s a kid with diabetes to do?

I can’t admit that I remember it being a big deal, but my mother will recount that first Halloween, when she leaned in to give me a kiss and she smelled chocolate on my breath. “I thought it would kill you,” she admitted. That panic, that first taste of unadulterated fear was something my parents felt so I wouldn’t have to. I was just a little six-year-old kid. I was more concerned about whether or not my gypsy skirts were getting tattered on the edges from running through the streets on Halloween night.

In the first few years after my diagnosis, the candy was monitored and handled by my mother. I had a few pieces, a little bit was stashed away as “reaction treaters,” and my brother and sister bartered with me for the rest. My older brother, little sister, and I would sit on the floor after trick-or-treating and pour our pillowcase collections of candy out onto the floor, separating the candy into genre piles – one for chocolate, one for hard candies and gum, and a potluck of the non-candy items like pencils and stickers. Somehow, I usually ended up with all the pencils and stickers as my brother and sister grinned at me with chocolate-stained mouths.

I used to sneak pieces of candy, though. I do remember finding the “reaction treater” stash and cramming five or six mini-Snickers bars into my mouth. The chocolate taste was sickeningly sweet and tasted like a melding of delicious deception. I didn’t get caught but the feeling of guilt I experienced is something I can still feel deep in my stomach if I think about that moment too much.

So now I was a diabetic trick-or-treater. Couldn’t tell by looking at me. In my group of friends, you couldn’t pick me out of that crowd. Which is probably why the cop used his police cruiser intercom to harness my attention.

I was about nine years old, trick-or-treating with my friends in one of their neighborhoods. There were seven or eight of us and we were all costumed and toting pillowcases to carry our bounty.

The headlights came up behind us first, then the swirling red and blue police lights. The intercom squealed on.

“Kerri Morrone?”

We stopped dead in our tracks. No one turned around. My friend Christie whispered loudly to me, “Did he just say your name?”

“Kerri Morrone? We’re looking for Kerri. Is she with you guys?”

My blood ran cold. What could I have possibly done? Did they know I talked during the D.A.R.E. presentation and they were mad about it? Did they find out I had pinched my sister on the arm for telling on me? Oh my God, did they know I sneaked candy every Halloween?

Like a convict on the run finally giving in, I turned around slowly and raised my hand over my head.

“I’m Kerri.”

The intercom squealed to life again. “Please come over to the car.”

I shuffled my shoes, now filled with lead, toward the police cruiser. My friends stood back, clutching their pillowcases and staring.

The window of the police car lowered and revealed the smiling face of Officer Mark, the young D.A.R.E. officer who visited my middle school every fall.

“Hi, Kerri. Sorry to scare you.” The grin on his face was warm and friendly. “You know, my wife is diabetic. She likes this special sugar-free candy. I thought, since you were diabetic too, that you might like some.” He reached to the seat beside him and handed me a white box with a black and orange ribbon tied around it.

Are people aware of the very moment they affect your life forever? The moment that they make you feel less alone?

“Thanks, Officer Mark. Really, thank you. This is awesome. I thought I was in trouble, though!”

His grin became even wider. “Yeah, well you’re not. But make sure you and your friends stay out of it!” He leaned out the window and gestured toward my friends. “Be careful, girls! Have a good night!”

“Bye, Officer Mark!!” they all called in unison.

The next year, I dressed up as a gypsy ... again. I was also still a diabetic.

I was okay with being both.

*   *   *

Have a safe and happy Halloween, and don't forget - NaBloPoMo starts tomorrow.  So does NaNoWriMo.  Who's in??

Posted by Kerri Morrone Sparling at 12:35 PM | Permalink | Comments (15) | TrackBacks (0)

... and that five letter word is "guilt." 

At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise.  "But the complications of well-managed diabetes?  None." 

And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me.  Well-managed diabetes produces no complications?  So diabetes-related complications are just the result of an inattentive "host," or "slacking off?"  It's not the fault of diabetes itself?

The direct relationship between diabetes and guilt has always made me feel ... well, guilty.  I'm not familiar with what it's like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well.  And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of "You did this to yourself."  It sounds harsh, but I hear it all the time.

It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to.  "The pump does it all for you, right?  So diabetes is like, simple to manage?"  Or "Just follow the rules and you'll be fine, right?  Bad stuff only happens to people who are lazy and don't take care of themselves."  I've never, ever heard someone ask a person living with a different disease - "Oh, what did you do to make this happen?" - but I've heard someone ask me about my diabetic retinopathy and respond, "Well, you must not be controlling your diabetes very well."

I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it.  I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should.  Efforts are made to best manage my health, but the fact remains that I have a disease.  I don't classify myself as "sick" and I don't view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin.  As a result of this, the blood sugar homeostasis of my body has been forever disrupted.  And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn't a cure.  My pancreas remains busted, so I will never be in "perfect diabetes control."

Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of "something I did."  I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault. 

Back in March, I found this piece of paper wedged into an old diary of mine from middle school:

Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn't play a role in any of the outcomes.  "If I want to live:" is how that piece of paper starts off.  What a heavy burden for a child with diabetes.  High blood sugars?  My fault.  Spilling protein into my urine?  My fault.  Any threat of complication?  My fault?  Diabetes wasn't the cause - I was, apparently.  (Granted, many times highs and lows were a result of being a rebellious teenager or eating a 'forbidden food,' but were it not for the diabetes in the first place, it wouldn't be an issue.)

I don't agree with this mentality, and I refuse to subscribe to it.  Type 1 diabetes requires daily maintenance and diligence, but even if I follow "all the rules," there can still be complications.  My genetic make-up plays a role.  My family history plays a role.  And of course, my actions play a role.  This isn't a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health.  I have always tried to remember my role in this relationship with diabetes, but I can't fool myself into thinking that if I just work hard enough, my body won't ever exhibit diabetes complications.  If my eyes start to bleed, it's not because I didn't care enough.  Things happen, and I need to be able to roll with whatever life dishes out.  I live with diabetes every day - I don't need the guilt.

Because at the end of the day, diabetes complications are the result of diabetes.

Posted by Kerri Morrone Sparling at 11:30 AM | Permalink | Comments (70) | TrackBacks (0)

Due to some recent traveling, I've been falling way behind on my fellow diabetes bloggers.  But there have been some posts in the last few days that I think are must-reads.  So today, while I finish up my visit in Philadelphia at the ePatient 2009 conference, I wanted to share some of my favorite posts from the diabetes blogosphere:

Lee Ann at The Butter Compartment is a longtime type 1-er and a lady who understands the trials of fitting an insulin pump into a fancy dress moment.  Thanks to some Twitter tips and some good, old fashioned ingenuity, Lee Ann managed to McGyver her way into a fashionable moment.  (And personally, I never underestimate the power of duct tape.)

Wendy at Candy Hearts stumbled upon a Letter to the Editor from some idiot who saw a little boy take an injection at Burger King.  Apparently, the man who wrote the letter was horrified  by the drug taking at the table and felt the need to write to his local paper.  And while Wendy admits to having no idea what was in that syringe, she wrote a response to The Burger Grump, outlining why certain people may need to take an injection before eating (namely, did the kid have diabetes). 

Kelly at Diabetesaliciousness added her two cents, as well.  What's your take on this Burger Grump?  Do you feel that a PWD should be able to inject in public?  (Personally, I think it's no different than blowing your nose at the table.  If you can keep it clean and sanitary and discreet, it's fine.  People are allowed to manage their diabetes in public, so long as they aren't creating unsanitary conditions for others.)  If you want to chime in with your own letter to the editor, click on this link and visit the Pocatello Idaho State Journal website.

And those of us here on the East Coast apparently missed an AWESOME event, at last week's TCOYD in San Diego.  Manny touted it as the best diabetes conference he's ever attended, Cherise gave it a definitive thumbs up, and George agreed.  I've never attended one of the TCOYD conferences, but apparently there's one in my homestate of Rhode Island next September, and BSparl and I will definitely be in attendance.  Will you be there? 

What have you been reading in the diabetes blogosphere?

Posted by Kerri Morrone Sparling at 10:25 AM | Permalink | Comments (12) | TrackBacks (0)

The flight to Las Vegas from Boston is a long one – six hours on the way there and five on the way back.  I talked with my doctors before taking the flight, and being pregnant, I’m dealing with an increased threat of deep vein thrombosis.  The Factor V Leiden gene in my body is also a red flag, so these longs flights caused some concern for my medical team.

“We’re not worried so much as we have some rules for when you’re flying. The first is that you need to get up and move around about once every hour to keep your circulation steady and your legs moving.  And the second thing is that we’d like you to take Lovenox on the days that you’re flying.  That will help combat the Factor V risk.”

Take a shot?  No problem.  At least that’s one thing I can commit to without fear.

So about an hour and a half before my flights took off, I snuck into the airport bathroom and pulled out the pre-filled syringe of Lovenox.  Lovenox is an anti-coagulant drug that helps to prevent blood clots.  I don’t know much about it, other that it’s safe for pregnant women to take and it was one of the conditions set forth by Joslin, so I pretty much do what they say these days.  I’ve never taken anything like it before, so Wednesday evening was my first time.

Fellow diabetics, I just need to say that we have it good with our teeny, ultra-fine needles.  This Lovenox needle was clumsy, long, and thick.  “Inject it right into your abdomen, where you’d normally take an insulin injection,” the doctors recommended, so I did just that.  But it sucked a little bit.  One of the side effects of the injection is bruising and soreness, and they’re not kidding.  Within 15 minutes of taking the injection, a deep red thumbprint popped up on my abdomen, tender to the touch.  

But that seems to be the only side-effect I’ve experienced.  Except for a little bit of paranoia.  And now, a few days after the trip, I have the itchiest, red rash at my injection sites. 

Once a doctor tells me that I could be at risk for something, I do what I can to help mitigate that risk.  For these flights to Las Vegas, I took the Lovenox injections and made sure I was up and about once an hour, but I also did something else.

Every time I went into the airplane bathroom, I did some weird kind of calisthenics.  Thanks to BabySparl, the need to pee is hourly (making me test my blood sugar all the time, wondering, “Is this because of Baby or am I high?), so I’d use the ladies’ room and then face the mirror.  And then do this bizarre mix of high knee raises, running in place, and stretching.  Thankfully, being barely 5’4” gives me enough room to move around in there, but I felt like a tool.

“And stretch!  And stretch!”  I heard Jane Fonda in my head as I faux-exercised in the airplane bathroom.   

I prayed that the stewardesses couldn’t hear me thrashing around in there.  How the hell would I explain that?  “I don’t want a blood clot so I’m doing a little dance here in the bathroom.  That's legal, right?”

It’s all new to me, and I’d appreciate any feedback from someone who’s been there.  (And if you have airplane exercise tips, share those, too.  I’m heading to Florida in two weeks and am wondering how I’m going to embarrass myself on that plane, too!)

Posted by Kerri Morrone Sparling at 10:07 AM | Permalink | Comments (30) | TrackBacks (0)

Last week at the BlogWorldExpo new media conference in Las Vegas, Nevada, the medical blogosphere staked its first claim, with the very first medblogger track taking place on October 15th.  The medblogger track was co-sponsored by Johnson & Johnson and MedPage Today, and they flew us out there and put us up, which was quite jazzy of them.  (Actually, the whole thing started with Kim on Emergiblog raising her voice.  She got this ball rolling, big time.)  I joined the BetterHealth crew and represented for the patient bloggers.

And by “represented,” I mean that out of four different panels totaling 16 participants, I was the only patient blogger panelist.  I stood out as the “one without a medical degree” and there are no initials after my name, but I did my best to show the medical blogosphere that patients are a powerful voice in this community, and that we are a growing group in the blogosphere as a whole.

I participated on the “The State of the Health Blogosphere:  We’ve Come a Long Way, Baby” panel, with fellow panelists Kevin Pho of Kevin, MD and Nick Genes of Blogborygmi, moderated by the always-fabulous Kim McAllister of Emergiblog.  And we went first, which was both nerve-wracking and exciting - nothing like kicking off the BlogWorldExpo medblogger track!

Continue reading "BlogWorldExpo: Medical Bloggers Make Their Debut." »

Posted by Kerri Morrone Sparling at 10:48 AM | Permalink | Comments (9) | TrackBacks (0)

I have a lot to catch up on, but something I wanted to post about ASAP was the Making Sense of Diabetes contest that is happening at TuDiabetes, in preparation to raise awareness of World Diabetes Day (coming up fast on November 14th). 

According to the release, "We are seeking video entries that tell about the impact diabetes has on our lives through one of the five senses: sight, hearing, taste, touch and smell.  Diabetes affects our lives in ways we may not always realize. We smell insulin, savor glucose tablets, feel the poke of our lancing devices, react to our doctor’s words and see the life ahead of us."

They're looking for video submissions, and there are some really cool prizes on tap for winners.  Not to mention the emotional boost that creativity like this can provide - which, in my mind, is huge in helping us deal with diabetes.  For details on how, and what, and when, to submit, check out this entry on TuDiabetes.

I'm working hard to unpack and find my Flip camera so I can do a submission, but in lieu of my own video, here's a post from back in 2005 that touches upon this theme.  In re-reading it, now over four years later, it makes me happy, in that bittersweet sense, to see how many of these goals I've accomplished, even with diabetes:

The Five Senses.

I want a cure tonight.

I want it so badly I can taste it tonight. It tastes like black raspberry ice cream from St. Claire’s Annex in Watch Hill, all creamy and cold. It tastes slightly salty, like my skin after a day at the beach. It doesn’t taste at all like airplane glue or sweaters on my teeth after a few hours of a high bloodsugar. It doesn’t taste bitter, like the chocolate flavor on the back of my tongue after sneaking Halloween candy as a child.

I want it so badly I can feel it tonight. It feels like his strong hands on my shoulders, easing out the stress of the day. It feels free and almost scary, like standing on the top deck of the Block Island Ferry and leaning over just that little bit as the boat cruises towards shore. It doesn’t ache, like my stomach as I drive to Joslin or the eye doctor. It doesn’t burn, like my conscience often does when I think of the unfocused, foolish choices I’ve made regarding my health.

I want it so badly I can hear it tonight. It sounds like Siah sleeping on my pillow at night, gently purring in my ear. It sounds like that first cry my nephew wailed, piercing the night with his brand new voice. It doesn’t sound like the beep beep beep of Charlene as she counts up the correction tally. It sounds nothing like my voice shaking as I admit to the precursors of complications to my doctor.

I want it so badly I can smell it tonight. It smells like Ivory soap. It smells like a dozen unexpected roses brightening a dreary office. The scent isn’t even reminiscent of that dentist smell emitting from a broken bottle of insulin. It smells nothing like fear.

I want a cure so badly I can almost see it tonight.
It looks like my healthy body.
It looks like my healed fingertips.
It looks like my smile.
It looks like my pump, tucked inside an old jewelry box for the rest of my life.
It looks like my wedding.
It looks like my child.

It looks like my future.

Posted by Kerri Morrone Sparling at 10:42 AM | Permalink | Comments (11) | TrackBacks (0)

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.

Posted by Kerri Morrone Sparling at 12:22 PM | Permalink | Comments (31) | TrackBacks (0)

If you just snapped a quick picture, you wouldn't see it.  Not unless you were looking for the small signs, like my insulin pump.  Or my spotted fingertips.    

Type 1 diabetes isn't something you can see on me.  It's not an illness that, at this point in my life, comes with any constant external symptoms.  I am fortunate enough to not use a wheelchair or need vision assistance devices.  You can't see my disease, even though it's something I manage every day.

I seem "normal."  (Stop laughing.  Let me use the word normal for the sake of this blog post, at the very least!)  I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.

And I am happy. 

But my good health is not without great effort.

Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter.  Every meal I've eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose.  And every night has my finger pricked by a lancet before my head hits the pillow.

This isn't a pity party.  Not by a long shot.  My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I'm now wearing medical devices 24 hours a day, every single day.  And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn't like the idea of a small child dealing with this disease.  

Kids are fun to cure.  They're cute.  And their futures seem worth investing in.

What confuses me is how quickly people forget.  Type 1 diabetes became a part of my life a long time ago, and I don't remember even a snippet of "the before."  But even though I've lived very well with this disease and kept it from defining me in any way, it's still here.  And it's still something I deal with every day, regardless of how well or poorly controlled.  But just because I'm no longer a little kid with the bright, shining future, am I any less diabetic?  Any less deserving of that cure?  Just because you can't see my disease, and because I seem to have it under physical and emotional control, does not mean it's past the point of deserving a cure. 

Here is a vlog post that I did back in February about vlogging during a low blood sugar and how "diabetes can look so normal yet feel so rotten."   It's a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:

Children with diabetes grow up to be adults with diabetes.  And all the while, we're still ready for progress. And for hope.  And for a cure.

This week, September 14 - 20th, is Invisible Illness Awareness Week.  And today, I'm raising my voice for type 1 diabetes. 

Posted by Kerri Morrone Sparling at 10:32 AM | Permalink | Comments (37) | TrackBacks (0)

I'm refraining from using the words that are REALLY flying around in my head regarding this discrimination issue.  But believe me, Yosemite Sam ain't got nothin' on me this morning.  My whole brain is "frick-a-frackin' ..."

Here's the story that was posted on TuDiabetes by "ShipAddict," a woman who wears an insulin pump.  This copy is taken directly from her posting, without any editing: 

"Has anyone besides me ever been kicked out of a pool for wearing a pump? I received a letter from my HOA board to refrain from using the pool because they consider my pump to be a port and I will infect our entire community for using the pool. Also they think that the wound site will spread infection through out our community. They photograph me using the pool or send a board member down to the pool to stare at me or will have our community attorney sit down at the pool to intimadate me to stop using the pool. I am recovering from a stroke and need the pool to help my paraylis. Also my heart is bad and the stress they are causing me makes me literally sick. But I own a share of the community and pay 245.00 a month for a maintance fee that gives me access to the pool. Any ideas what I should do? Animas 2020 is my pump and on page 95 of the user guide it reads that it is safe to use the pump while swimming. I have removed the pump and capped it off just so no one will yell at me or send me another letter."

This woman was kicked out of the pool because she was wearing an insulin pump?  She's recovering from a stroke and using the pool as part of her therapy, she's wearing a waterproof Animas pump, and she's minding her own business?  But she's being intimidated by the community attorney (by the way, what kind of community has an attorney prowling around the pool?) and photographed using the pool, as if she was doing something wrong?

I know I live in a bubble.  And I know that not everyone understands the medical devices that we wear to manage our diabetes.  But would you tell a child with a cochlear implant that they can't use a pool?  I am really tired of people assuming that our efforts towards good control and good health are something to ridicule, judge, and persecute.  I'm not sure what to do about this story, but I want to lend my support, and I'm hoping that we can help ShipAddict feel the support of our community as a whole.  What can she do to protect her rights? 

Hey Animas - this lady is using your pump.  Anything you can do to rally behind her?

Hey Media Outlets, interested in doing a story on this to help raise awareness for the rights of people with diabetes?

Hey ShipAddict, we've got your back.   

(And hat tip to Jeff, who let me know about this story.)

Posted by Kerri Morrone Sparling at 09:52 AM | Permalink | Comments (36) | TrackBacks (0)

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. 

Posted by Kerri Morrone Sparling at 10:44 AM | Permalink | Comments (39) | TrackBacks (0)

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 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.

Posted by Kerri Morrone Sparling at 10:18 AM | Permalink | Comments (14) | TrackBacks (0)

I have a lot to catch up on, including a post about Lee Ann and I braving the Indiana highways and then the BlogHer conference, but let me just say this first:  I like Charlie Kimball.  I like him as a person, as a fellow diabetes advocate, and as a race car driver because, really, that is just damn cool.  So there's my big disclaimer:  I like Charlie.  (I even have a post ready to write about meeting up with him at Friends for Life a few weeks ago.)

So I do not like to see Charlie, the guy, under such attack for the @racewithinsulin Twitter account.  Plenty of bloggers are up in arms about the Novo/Kimball union and its steps into social media, like John Mack from the Pharma Marketing Blog.  I felt a little protective of my fellow PWD, which prompted me to do a little investigating.  I wanted to know how Novo, the company, feels about this whole Twitter/marketing/Pharma thing.

So I asked them.

She agreed to answer my questions.  And since Novo is the first I can think of to jump in with a pharma-branded Twitter account with a "real face," I wanted to hear the answers.  (Note:  All links to pages within the answers were added by me.)

Kerri:   Charlie is a valued member of the diabetes community, so I can understand why you guys chose to partner with him. But what made you decide to start a Twitter acct?  

Novo:  When we decided to partner with Charlie, we explored a number of different opportunities. He was already "tweeting" personally, however, when he asked about tweeting about our partnership, which includes the insulin he takes everyday, Levemir and NovoLog, we knew had to figure out a way to do it right. We didn't think it was right to ask him to put the prescribing information on his page and monitor every time he tweeted about diabetes. So we created a new account that we could ensure met all regulatory guidelines. Why Twitter? He was already doing it, so we wanted to create something that would easily fit into Charlie's lifestyle.
 
Kerri:  Why are Charlie's personal Tweets and his Levemir Tweets exactly the same?  
 
Novo:  It's important to understand that Charlie does all of the tweeting, both on his personal page and on the Novo Nordisk Race with Insulin page. It's up to him. They aren't always exactly the same, but where convenient and appropriate, he uses the same tweets, as it's probably easier to copy and paste. There are times when the tweets are different.
 
Kerri:  Does Charlie write the Levemir Tweets or is there an editorial vetting proces? Can you explain the thoughts behind the "branded" Tweets?  
 
Novo:  Charlie writes all of the tweets, including the Levemir and NovoLog branded tweets.  We provided him with instruction for how to tweet about the brands and comply with pharmaceutical regulations. So, anytime he tweets the words Levemir or NovoLog, a link to the product prescribing information has to be included.
 
The reason? Take a look at the page from your computer. You see the patient safety information on the left, along with a link to novonordiskcare.com on the right, which contains all of the prescribing and other important information. The challenge is, because the majority of Twitter users read and update their accounts from mobile devices, we knew most people would not see that information if Charlie wrote a tweet. That's why the prescribing information is there. It's required. It's similar to when a company does any stand-alone promotion of a product, that information has to be there.
 
More importantly, it's important to understand that the branded tweets aren't random. Charlie takes Levemir and NovoLog, so when he decides to tweet that he just took his insulin, he really just did. We don't believe a pharmaceutical company has tried to do branded tweets before, much less with a spokesperson who takes the insulin. But we're still learning and trying to figure it out. It's been a fun and definitely interesting time.  
 
Kerri:  Why doesn't the @racewithinsulin Twitter acct follow or reply to anyone? What kind of regulations must be in place for a Twitter acct of this kind?  
 
Novo:  While Charlie is the face of Race with Insulin, it is a corporate account for Novo Nordisk.  At this time, we aren't able to follow anyone, as pharmaceutical usage of social media is very regulated and we want to ensure we do it right. This is just the first phase and as we grow and learn, hopefully we will be able to follow people in the future. We are also open to suggestion.

After speaking to you, we took your advice and set up an e-mail address for the page. (Editor's Note:  I suggested that the account would seem a bit more accessible if they, at the very least, had some contact information.)  You should see an image update in the next week with the new address. But as I know you know, social media moves in real time and we haven't quite caught up to that speed in pharma. We're making baby steps but we're trying to stay in the race.
 
Kerri:  We know you guys are breaking new ground with this Twitter account, so what should we expect as part of your growing pains?  
 
Novo:  We're still learning. We want to do a lot, but we also understand that the pharmaceutical industry is the most heavily regulated in this country. We won't be able to do things as easily as say computer or food companies, but you have our commitment that we do plan to try to engage. Stay tuned.  
 
Kerri:  How has Novo felt about the blog backlash to @racewithinsulin, and how has Novo moved to protect themselves and Charlie?  
 
Novo:  If no one talks about what you do, you probably haven't made much of an impact. That said, it would be nice if the talk was all positive and more importantly, true. We encourage people to ask questions and give us an opportunity answer. We're pretty transparent about our challenges and open to discussion about any ideas to make it better. There were some false assumptions gaining traction, but that's also the nature of this business. You can never please everyone, but you can only hope that social media will adopt some of the principals [sic] of traditional journalism and report the facts, before making assumptions. We're working to move quicker to respond but also encouraging anyone to just ask. As for Charlie, he has been great. He's in a profession where he already has a lot of attention on him and is working with us to help make the page a success.

Kerri:  What do you want the Twitter community to understand about the aims of @racewithinsulin?
 
Novo:  We are very happy to be working with Charlie and wanted to reach as many people as possible. Twitter was an application that Charlie was already using and we wanted to find a way where he could continue to do so and incorporate our relationship.

It's still new and we're just getting started, but we hope to continue to find new, innovative ways to continue to reach everyone with his powerful message that diabetes does NOT slow him down!

*   *   *

I'm glad Novo went out on a limb and dove into the social media space, and I'm also glad that they agreed to answer my questions.  Thanks, Ambre!  What are your thoughts about Pharma in the social networking space?  Don't just say "Hey, they're doing it wrong!"  If you think it's so wrong, what would make it right? 

Posted by Kerri Morrone Sparling at 09:22 AM | Permalink | Comments (6) | TrackBacks (0)

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.

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.

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!   

Posted by Kerri Morrone Sparling at 09:53 AM | Permalink | Comments (11) | TrackBacks (0)

You have already read some great wrap-ups of the Roche Diabetes Blogger Summit from some of my fellow bloggers - Amy, Manny, David, Gina, Christopher, Bennet (Note: Mr. YDMV's updates are fictional.  Well, mostly.), and Sandra.  I just wanted to chime in with my thoughts and add my photos to the collection.  :)

We met up in Indianapolis on Wednesday afternoon, after I had flown from LaGuardia to Detroit and then to Indianapolis.  (Yes, I took two flights so that I could avoid taking the itsy bitsy plane that Roche originally had scheduled me on.  The travel people at Roche were very patient and understanding regarding my travel issues, and I really appreciate their compassion.)

But apparently my fear of flying wasn't kept within the travel coordinator circle, as several people from Roche mentioned at the dinner that "Some of us even traveled despite our fear of flying," and heads slowly turned towards me, to which my only xanax-laced response was "I walked."  

Good thing I don't mind being laughed at.  Or with.  More on that later.  

I'm no fool - part of what Roche wanted was to be talked about in the blogs.  Hence why they asked many of the diabetes bloggers to visit their headquarters and brainstorm about social networking and Pharma involvement.  But Roche did this right - they paid for our travel, they paid for our hotel, they made us feel as though we were valued guests, and they listened when we offered our opinions.  We didn't travel on our own dime and feel taken advantage of, but instead appreciated.  That's a good start, in my book. 

It was really a groundbreaking sort of event, with Roche having the balls (go ahead and quote me on that, Rodger the Social Media Warlord) to invite a pack of opinionated bloggers into their house to talk frankly about social media and Pharma - specifically, THEIR Pharma.  We talked about ways that Pharma can appropriately enter the social media space without being received by a mob with torches and pitchforks.

In my opinion, Pharma needs to simply embrace the fact that transparency, honesty, and being open to feedback can make a huge difference in how they are perceived by their patient base.  For Roche to sign on to a social networking site by creating a fake profile or pretending to actually live with diabetes, well that's just plain stupid because we'll sniff them out in a second and destroy them.  However, if Roche, or any other Pharma crew, is willing to put a face to their company and leap into social media by saying, "We aren't living with diabetes, but we want to help improve the lives of people living with diabetes - that's why we are here and that's why we want to be engaged" ... that kind of disclosure and transparency will go a very long way.

I gave the example of Albert Chen, a member of the Agamatrix team who, with grace, honesty, and class, joined the diabetes blogosphere with his blog "What Is Diabetes?"  He said, right in his bio, that he didn't have diabetes, but wanted to better understand the community he was working to serve.  That, Pharma companies who are reading this, is the way to work with the diabetes online community.  Get to know us.  See that we are more than just the sum of our co-pays.  Remind us that Pharma has a face, and more importantly, that you remember we are people, too.  

The Roche team didn't always directly answer the questions, but I can understand that "Why aren't strips cheaper" isn't a question that they can answer without sounding like a business.  However, they need to understand, and always remember, that their business is our life.  So while that chasm remains wide, I think this was an important step in beginning to bridge that gap.

Posted by Kerri Morrone Sparling at 09:14 AM | Permalink | Comments (7) | TrackBacks (0)

Jay Hewitt is one of those diabetes role models that makes sense to me.  He's smart, tuned in, and realistic about his health, and he doesn't pretend to be perfect.  (You guys know how I feel about the notion of diabetes perfection - doesn't exist.)  Jay and I spent some time chatting on Friday afternoon and we talked about the concept of survival with diabetes.

"I try and live my life as a non-diabetic.  I'm not going to live in denial [about diabetes].  I live in determination."  Jay told me about being diagnosed at the age of 24 while in law school (he's lived with type 1 diabetes for 18 years) and he's convinced that the stress of law school and life at the time is what triggered his diabetes diagnosis.

"Me, too!  I had a virus on my birthday that my doctors are convinced triggered my diabetes."  I said.  I told him that many of us with type 1 can remember some kind of catalyst event before the "you have diabetes" moment.  (Stress seems to play a significant role in our collective medical histories.)

We talked about the impact of being public about our diabetes management has on our drive to be healthy.  I admitted a few of my own fears to Jay.

"I'm healthy now, with no visible diabetes complications, but I worry about what will happen, and how people will perceive me, if things change in the future.  How does that motivate you?"

"It makes me work even harder.  I take that 'I'll show you' mentality when it comes to diabetes management.  Knowing that people are watching helps me to push," he offered candidly.  "It's not about guilt [when it comes to complications], but revenge." 

We talked about the impact of being diagnosed as a child and as an adult, how most of the parents at CWD were caring for their child's diabetes directly while his own parents had more of a distance between themselves and the disease.  Since Jay is a motivational speaker and speaks to groups both dealing to diabetes and otherwise, I asked him what message he wants to impress upon his audiences. 

"What is the takeaway you want for parents?" 

"I want parents to have the confidence that that their child can be anything they want to be, and the comfort that they can sleep at night."

And for the kids?

"I want them to see anything they want to be and think, 'I can be that.'"

As I sat across from Jay, straddling that line between being a "kid" and that desire to be a parent myself, I saw a guy who lives an incredible life, despite and even with diabetes.  He's healthy, determined to succeed, happily married, and the proud parent of a little girl.

And I thought to myself, "I can be that."

(Unnecessary sidenote:  Last year, I wrote about Jay Hewitt's speech at CWD, and in my blog post, I mentioned that he was handsome. 

Of course, someone that knew Jay found my post and forwarded it to him. 

And, of course, he read it.

And, of course again, I was mortified and went to edit the article but the damage was already done, so I was forced to leave it as is and suffer the embarrassment.

So this year, when he came to find me and he said, "Hi!  Nice to see you again.  I loved your post from last year," I turned all kinds of colors and tried to pretend I had grown up a smidge since then.)

Posted by Kerri Morrone Sparling at 09:18 AM | Permalink | Comments (11) | TrackBacks (0)

(I had one more quick post to write.  THEN I'm going back on vacation!) 

We're too active for a sit-in, and we aren't exactly the types (literally) who can do a hunger strike.  But a test-in?  That's something we, as people with diabetes, can and should get behind!

In just a day or two, TuDiabetes and EsTuDiabetes will reach the combined member total of 14,000.  Manny Hernandez and team over at these sites have organized a "test-in," where everyone with diabetes can test together at 4 pm EST on July 14th. 

If you're part of the diabetes community and you want to participate in this awareness event, here's what you can do:

1. Test your blood sugar at 4 pm EST on July 14th.
2. Post your reading in the thread at TuDiabetes, share your reading on Twitter using the #14KPWD hashtag, or update your Facebook status with your result and link back here. 
3. Grin, knowing that the simple act of testing your blood sugar both benefits your health and increases awareness for this disease that we all live with every day.

Posted by Kerri Morrone Sparling at 09:35 AM | Permalink | Comments (8) | TrackBacks (0)

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."

Who hasn't this happened to?  (Image credit:  Haidee Soule Merritt)

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.    

Posted by Kerri Morrone Sparling at 11:40 AM | Permalink | Comments (11) | TrackBacks (0)

I'm a supporter getting the stories of people with diabetes out there for public consumption. Awareness and advocacy are the name of the game, for me.  We aren't perfect, we don't have all the answers, but we do know what it's like to live, every day, with diabetes.  

And now you can share your story and win a prize!  Here are the details, according to the info I received:

If you have diabetes, support someone with diabetes, or help the diabetes community, then tell us. Your story could win you a trip to Charlie Kimball’s Firestone Indy Lights Championship race in Florida October 8-10, 2009! (Or other great prizes!)

Entries deadline: Monday, July 6, 2009 Midnight (EST).  Enter at www.GlucoStories.com.

I'm pro-Charlie, as you know.  I think he's a great guy and I like his mission to help people with diabetes (and I'd also like to drive his car).  So when the folks at American Diabetes Wholesale (they're putting this contest on) asked me to help spread the word, I was more than happy to help - and I'll be serving as one of the contest judges, as well.  Also, according to the email I received from my buddy at ADW, "any funds that are received from this event will be donated entirely to JDRF."  I can't argue with that. 

So if you have a story to tell, you still have a few more days to enter to win! 

/public service announcement  :)

Posted by Kerri Morrone Sparling at 02:03 PM | Permalink | Comments (0) | TrackBacks (0)

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.

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

Posted by Kerri Morrone Sparling at 09:02 AM | Permalink | Comments (14) | TrackBacks (0)

I'm often asked about why I chose the Dexcom CGM over the Minimed, and I have plenty of posts here on SUM that talk about my experiences with the two devices:

• Trialing the Dexcom.
• Trialing the Minimed.
• Opinions on the Minimed CGM.
• Deciding on Dexcom.

And then fighting for insurance:

• Deciding to Do Battle.
• Appealing Once.
• Appealing Twice.
• Appealing Three Times.
• External Appeal.
• WINNAH!

And after I had won insurance approval, Dexcom and I joined forces:

• Dexcom Disclosure.
• Even though I still talk freely about the Dexcom Pros and Cons.  :) 

Phew!  But part of even starting this process was wanting to go on a CGM to begin with.  I'm often asked about the different continuos glucose devices and pros and cons of each, I get just as many questions as simple as this:  "What made you ready to go on a CGM in the first place?" 

I know that for going from injections to pump therapy, I was frustrated with the lows that were happening three times a week, and how my ex-boyfriend was constantly finding me motionless in the bed at 4 am, covered with sweat.  After 17 years of injections and after two years of an A1C that wouldn't budge, I made the decision to use an insulin pump.

After deciding to wear one medical device, it was easier to try another one.  A few years of pumping made me feel comfortable with the 24/7 attachment of a diabetes device, so when the continuous glucose monitors became more prevalent on the scene, my interest was piqued.  At the time, I was in a serious relationship, thinking about having children in the future, and realizing how my blood sugars still weren't running better, despite my increased education and effort.  It was time to try something a bit different.

With a CGM of any kind, there's a certain security that comes with it.  I feel more confident speaking at events when I can look at the graph on my CGM and see that I'm holding steady.  Same for getting in the car for long drives, or on a plane for a few hours.  After twenty plus years of only having snapshots of what my numbers were like, I now have access to the streaming video, so to speak, of continuous monitoring.

Yes, there's also the "Hey, you're a robot" component to this.  I can't lie.  When I look at my body and I see all these things stuck to me, in addition to the red dots of diabetes devices past, I feel a little overwhelmed.  But it's part of living with this disease. (Most of the time, I'm able to shake off the robot feeling and just let Chris call me Rosie.  Whoops - there's the digression.)  I actually feel okay with wearing two medical devices.  It's sometimes cumbersome and inconvenient, but for me, the pros outweight any cons.  I hear a lot of bad news about diabetes, about how this many years with type 1 can really cause a landslide of issues, about how life can be compromised.  And I don't want that. 

Regardless of what happens in my future, I want to make every effort to be as healthy as I can, both mentally and physically.  And I'm ready to keep trying.  That's why I blog.  That's why I raise awareness.  That's why I pump. 

And that's why I wanted a CGM.

Posted by Kerri Morrone Sparling at 10:44 AM | Permalink | Comments (17) | TrackBacks (0)

Some bits and pieces that I wanted to get out as soon as possible, seeing as how I've been under the weather for a few days and falling wicked behind on just about everything.  Here are some diabetes advocacy bits I've been meaning to share!

The NYC support group I visited a few weeks ago has outgrown its Tuesday meetings and is now spilling over into a third meeting, at the end of each month at The Cure Thrift Shop.  If you are in the NYC area and you have next Thursday free, here are the details:

First meeting: Thursday, June 25th, 7:30PM-9PM
Meets every last Thursday of the month
Meeting location:  Cure Thrift Shop
111 East 12th Street (btwn 3rd and 4th aves),
New York, NY 10003
No cost or commitment.  All adults with T 1 diabetes welcome, newly diagnosed or old D veterans.  Get in touch to let them know you're interested/RSVP to: support@act1diabetes.org

I will not be able to make the first meeting (will be in Philadelphia for a conference) but if you are able to meet this fantastic group of women, I HIGHLY suggest you do just that.

Next on tap is some news I received from the JDRF about their fabulous Children's Congress. According to the press release,  "Some 150 children and teenagers throughout the U.S., and several from around the world have been selected to travel to Washington, D.C. this summer to represent their state and country and remind Congress and the Administration of the critical need to find a cure for a disease they live with every day— type 1 (or juvenile) diabetes.

These children—ages 4 to 17, representing all 50 states and the District of Columbia, and all diagnosed with type 1 diabetes—will converge on Washington, D.C., to tell their stories and urge lawmakers to help find a cure during the Juvenile Diabetes Research Foundation’s Children’s Congress 2009, from June 22 to 24." 

Also part of this Congress is Nick Jonas (OMG he is so hot ... if you're 15), who will be testifying to request federal funding for diabetes research.  With Nick will be Mary Tyler Moore and Sugar Ray Leonard, locking it down for diabetes research.  This is a very cool event indeed.

And lastly, as I mentioned before, I'll be in Philadelphia on June 24th - 26th for a conference, then hanging out with some members of the diabetes community.  If you are local to the Philly area and would like to join us for a diabetes meet-up on Thursday night, please email me at kerri (at) sixuntilme (dot) com (with the subject line "Philly").  Would LOVE to have you join us, if you can! 

That's all I have for the moment.  More stuff coming later, as I sift through emails.  :)

Posted by Kerri Morrone Sparling at 07:15 PM | Permalink | Comments (3) | TrackBacks (0)

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?

Posted by Kerri Morrone Sparling at 08:43 AM | Permalink | Comments (9) | TrackBacks (0)

Over the weekend, Chris and I (and his sister and dad) ended up in a harborside restaurant in South County, RI.  We stood in line and read the chalkboard menu until it was our turn to order from the girl behind the counter.

"What can I get for you?"

"Can I have an iced coffee?  Do you have iced hazelnut?"

"I'm sorry - we don't have hazelnut.  But we have snickerdoodle or french vanilla.  Either of those work for you?"

"Snickerdoodle sounds awesome.  Is that a syrup?  Is it sugar-free?"

She gave me just a quick look.  Not judging, just looking.  "It's definitely sugar-free.  Medium or large?"

"Large," I said, and she turned away to make my coffee and I saw the pink Animas pump clipped to the side of her black pants, the tubing sticking up all crazy. 

And instantly, I want to ask her a million questions. 

With the Dexcom and the Animas being integrated sometime "soon" and with my only pumping experience being with Minimed, I wanted to ask her how she liked the Animas.  I wanted to see how long she'd been diabetic and did she go to Joslin, too?  Did she know any other diabetics?  How long had she been pumping? 

I wanted to tell her that the tubing gets all crazy on my pump, too, sometimes. 

But do I have the right to make her diabetes my business?  Just because I write about it doesn't mean I have the right to grill her about her diabetes.  She wasn't asking me why I wanted to make sure the coffee was sugar-free.  She was just going about her business.  Did I have the right to poke into hers?  Just because she wears an "external symptom" of her diabetes in the form of that pink pump, did I have the right to ask her about it?

There have been a few times when a diabetes discussion was thrust on me without my invitation.  "Hey, what's that thing on your hip?" becomes this moment of advocacy that, while effective, wasn't what I wanted to do that day.  Sometimes I just want to order my coffee without being grilled about why I need to make sure the syrup is sugar-free.  Other times I'm blogging about the teeniest minutiae of life with diabetes.  I oscillate between wanting to be a diabetes advocate and someone who lives a quieter diabetes life.  Sometimes I don't want to talk about it at all.  That day, I didn't want to be an advocate.  (Or a pain in the ass.)  I just wanted to get some coffee and enjoy the day.

Maybe she doesn't want to talk about it, either. 

She made my coffee and added some cream.  I handed her my money. 

And I left without saying anything.

It's not always what we have to talk about.  There's way more to us than this. 

Posted by Kerri Morrone Sparling at 10:24 AM | Permalink | Comments (41) | TrackBacks (0)

Earlier this week, dLifeTV did some filming for our upcoming new season.  And as part of a segment we're doing on online diabetes support, I had the chance to see Nicole Johnson again and to meet two members of the dLife community - Mark and Shauntaye.

We talked about our common experiences as people with diabetes, and how online communities have positively impacted our health.  I thought about all of us, writing our blogs and really sharing so much of our personal medical experiences, and how much this whole journey has helped improve my life with type 1 diabetes.  Our little community here has gotten so big.

I spent the better part of this week confirming travel arrangements for the next few months, and even though I'm not a very good (or calm) traveler, just knowing I'll have the chance to connect with more people who "get it" makes all the flight anxiety worth it.  I'm looking forward to visiting Philadelphia for a conference at the end of the month and hanging out with some fellow d-community members.  I cannot wait to go to Orlando in a few weeks and attend CWD's Friends for Life conference.  I'm excited for the Diabetes Summit in Indianapolis in July, and for the BlogHer event the next day in Chicago.  And I am so honored to be speaking at the BlogWorldExpo in Las Vegas in the fall.  Lots of travel for a cause I'm still so passionate about.

But damn ...  I'm going to need a bigger suitcase.  ;)

Since I started blogging four years ago, I've had the opportunity to meet many fellow diabetics, either through SUM or TuDiabetes or the JDRF or dLife.  We're a supportive and inspiring crew, and I'm really looking forward to meeting more of us "in person."

Posted by Kerri Morrone Sparling at 11:03 AM | Permalink | Comments (17) | TrackBacks (0)

Dear Brett Michaels,

Really?  Really?  I'm going to hope that you were misquoted.  I'm going to hope that maybe the reporter took your comments out of context and made you sound like an idiot, instead of you actually saying the following:

Posted by Kerri Morrone Sparling at 09:20 AM | Permalink | Comments (55) | TrackBacks (0)

A member of the Diabetes UK outreach group sent me their video about "setting the record straight," featuring a young girl with type 1 diabetes who is being bullied by her peers.  They taunt her, telling her she brought this on herself and that she is contagious.  She turns to the camera and asserts the facts about type 1.

And I agree with this.  My diabetes isn't contagious.  It isn't because I ate too many candy bars as a kid or because I had a weight problem or because a black cat carrying red balloons crossed my path on a Tuesday evening. But how often do I turn to the camera ... I mean, person, and set them straight with a well-articulated and poised onslaught of accurate information?

I am not a doctor and I can't spin you a tale of the precise physiological aspects of how diabetes works, but I do know that there's a pile of stererotypes. Though blogging, my job at dLife, and just simply sitting on the subway, I come across plenty examples:

• "Diabetes is from eating too much sugar."
• If you wear a pump, it means you diabetes is "really bad."
• "You can't eat sugar."
• "You can't eat carbs."  
• (You can't eat anything, it seems.)
• "Diabetics shouldn't have kids."
• "Aren't you supposed to exercise when you're low?"
• "Diabetes is contagious and you can get it through sharing needles."
• "People with diabetes are unclean."
• "Diabetics are the reason for increased healthcare costs."
• Kids with type 1 diabetes can eventually outgrow their disease.
• "Diabetes is cured by taking insulin shots."
• "People with type 2 diabetes gave it to themselves."
• "All diabetics are overweight."
• "Diabetes isn't a big deal."
• "Did you used to be fat?"
  
• "No one wants to date or marry a person with diabetes."
  
• Diabetes can be cured by taking this pill, this chocolate shake (!), this raw food diet, this crap supplement.
• CGMs and pumps are a closed-loop system and by wearing one, I don't even have to manage my diabetes anymore.
• "You're grown up now, so your mother doesn't have to worry about your diabetes anymore."

And the list goes on and on and on ... for miles.  I can't even list all the ones I've heard over the last 20+ years because they vary in shapes, sizes, and levels of ignorance.

Chris and I talk about this sometimes, about how much the "average" person doesn't know about diabetes.  About how I get offended at times when people talk about diabetes like it's something not worth worrying about or how people who end up with complications are at fault for their body's failure.

"Not everyone understands, Kerri."

"I know, but I really wish they did.  And I know that's unreasonable because plenty of people have much better things to do than care about a disease.  But I cannot stand when diabetes is made out to be something that I 'asked for' or something I manage so easily with the push of a button on this pump, right?  Do we look to healthy?  Do we not look healthy enough?  I think this is a serious disease and the stereotypes make me nuts sometimes."

After a beat:

"Good thing I'm not bitter, right?" 

We laugh, but the song remains the same.  People don't have a clue sometimes.  Sara is writing about it.  George is Tweeting about it.  And I've touched up it here at SUM, too.

I want to know what kind of stereotypes you guys hear about.  Do you bother to correct people?  Do you write letters to let companies know that their marketing campaigns are painful to watch?  Do you make efforts to ignore the misinformation or do you work to correct it when and where you can?  Or are you practicing your apathetic "pfffft!" and moving on without giving it much thought? 

Posted by Kerri Morrone Sparling at 10:47 AM | Permalink | Comments (56) | TrackBacks (0)

A few weeks ago, when I was poking through some old photos, I found my first teaching manual from Joslin.  (The big, red book.)  And tucked inside of that book were some old advertisements for glucose meters.

Like this brick from Accu-Chek:

This thing was huge, took two minutes to produce a result, and it was heavy enough to double as a hurricaine doorstop.  It's remarkable how much this technology has changed in the last twenty-two years.  Here's another oldie:

I love the instructions - they're a freaking mile long!  Blood glucose monitoring has come a very long way since my own diagnosis - from urine testing to blood testing to the Dexcom that reads me every five minutes - but I'm not as impressed as I'd like to be.  I heard a few months back that the accuracy requirements for today's meters are the same as they were back in the late 1970's.  (Is that true?!)  Color options are great and shorter instruction manuals are also nifty, but I'd like this thing to give me results that are SPOT freaking ON. 

Like this morning.

I tested and got 77 mg/dl on my meter.

The Dexcom said I was 39 mg/dl.

I tested again and saw 101 mg/dl.

How can I respond to a number that doesn't sit still for even a second?  How is a diabetic supposed to aim for that moving target?

Most days, diabetes doesn't get into my head and scratch around.  Most of the time, I feel emotionally and mentally equipped to handle the disease management and "life" management.  It's never fun, and never simple, but it's something I feel at peace with.  But this morning, I couldn't even get a sense of what blood sugar number to react to.  And when I peeled off the Dexcom sensor to replace it, a ripe, red dot of infection had brewed up underneath.  My blood sugar, when I arrived at work, was 123 mg/dl but after I ate my snack, it crested up to 234 mg/dl for some ungodly reason.  I don't know which end is up.  And technology isn't doing anything to make type 1 diabetes any easier.

Today, I'm spent.   

Posted by Kerri Morrone Sparling at 10:30 AM | Permalink | Comments (21) | TrackBacks (0)

Diabetes brings us together, that's for certain.  Since I started blogging, I've had a chance to meet so many other people with diabetes, and I've had the distinct pleasure of forging friendships with these kindred spirits.

George Simmons is a guy I'm proud to call a friend.  

And he's written a beautiful song called "Not By Choice," which he has recorded professionally and loaded to iTunes (where you can purchase it)!  George and I shared a cup of virtual coffee and he humored me by letting me interview him:

Kerri:  SuperG, I'm honored to count you as a friend, but there are some people out there who don't know who you are. (I know, dude. I, too, am shocked.) Can you tell them who you are?

George:  My name is George Simmons. I am a 36 year old, father of 2, husband of 1, and a type 1 diabetic for 18 years. I love to play music, sing, write, play video games, and make people laugh as often as I can.

Kerri:  You've written a song in tribute to your own diabetes - that is so awesome. What is the inspiration for the song?
 
George:  I wrote "Not By Choice" last November for World Diabetes Day. I knew I wanted to do something special for that day on my blog and literally started the singing the chorus on my way home from work one day. By the time I got home, I worked out the chords, wrote the lyrics for the verses and recorded a video of myself playing it. The inspiration was really just wanting to express some of the journey of this disease and in turn hopefully help others to see that they are not alone.

Kerri:  What made you want to record it and put it out there for the world?

George:  After the vlog post went up I had a lot of people asking for it. I was so flattered but was not sure I could pull it off. The more I read the lyrics and heard the song it was like something was telling me that I had to do it. I had to tell this story because the more I heard from people, the more I realized that it was not just my story. And I saw that it was not only a song for people with diabetes but really anyone living with a chronic condition can find their own story in these words.

Kerri:  You've been diabetic for a long time, but you've made incredible strides in your own health over the last few years. How has the diabetes community helped you take better care of yourself?

George:  I often tell of how the online community saved my life. I mean that with deepest sincerity. Before I found this community I was a pack a day smoke who never checked his blood sugar, and who had an A1C of 12.5! After finding all these people online and starting my own blog, I have lowered my A1C significantly, quit smoking, started insulin pump therapy, check my BG 8-10 times a day, and just recently won a battle with insurance for CGMS!

All this I did with the help, support, and guidance of this community. I love it so much.

Kerri:  And it loves you, too, George.  Seriously.  So what can we, as your d-crew, do to help you?

George:  Spread the word! If you know someone who lives with diabetes maybe they will find some comfort in these words. Here is a direct link to where you can get the song using iTunes.

Kerri:  What's your goal/dream for this song? What kind of a difference do you want to make?

George:  My dream would be for this song to help raise awareness about a disease that does not get, in my opinion, the attention it needs. But my goal is to just help touch someone's life and make them feel less afraid, less different, and not alone.

Kerri:  And is your offer to take Siah serious? Because I have a box with airholes, postmarked for California, right here beside me ... :)

George:  I would in a heartbeat if only my wife was not allergic to cats. Although, now that Siah has started blogging, I would be a little afraid to leave her alone in the house.

Kerri:  Good point.  Thanks, George.  You are something else, my friend. 

This song is gorgeous.  Chris and I listened to it last night and applauded like mad at the end.  I recommend that everyone who has diabetes, or cares for someone with diabetes, downloads this song and adds it to their playlist to provide some much-needed inspiration. 

So what are you waiting for?  Go!  Download!  Listen!  And for another FOG (Friend Of George) post, check out Scott's post at Diabetes Daily.

Posted by Kerri Morrone Sparling at 08:30 AM | Permalink | Comments (11) | TrackBacks (0)

I can't pretend to have all the information on Judge Sotomayor and her Supreme Court appointment.  But I do know that my first day back here at work has been one email after the other about Sonia Sotomayor and the effects of her type 1 diabetes on her potential new gig. 

Total media deluge.  Here are some of the highlights:

• Time Magazine provided an article that made me wonder if I'll make it to 40 years old, never mind to tomorrow, complete with heroin-esque photo to represent an "insulin injection."  They unfortunately paint diabetes as a disease that will rot you in a month's timeframe and leave nothing but your shoes.  (Hey Time, why don't you visit the Diabetes365 project to get a feel for what real diabetes photos look like?  Sorry for that digression but mainstream media needs to get their hands on some better, more accurate stock photography!)
  
  
• The Wall Street Journal asks the question, "Should Sotomayor's diabetes be considered in the nominiation process?", citing the ADA's press release applauding Obama's selection.  Apparently, Sotomayor's weight is under attack as well as her diabetes status.  Are only the uber-healthy capable of just rulings?  The news, she is going berserk.
  
  
• The Newsweek "Human Condition" blog comes right out and says not to worry about Sotomayor's diabetes, stating, "And while Sotomayor's condition may lead to complications that force her to retire after twenty years of hard work on the court, there's also the chance that if appointed, she could be hit by a bus on her second day and be forced to retire then."  (Morbid, but good point.)
  
  
• The Huffington Post is in on the action, too, calling out a few Twitterers for running their 140 characters:  "Glenn Beck's Twitter - wondered if Obama, the 'messiah,' has healed Sotomayor's diabetes yet. Michelle Malkin proved that Twitter's 140 character cap isn't too strict to include both a vague sexist and racist remark."  And the Wonkette takes sarcasm and snark to a new level with their "Sotomayor has diabetes - good or bad?" column.
  
  
• Yet this article from the New York Times doesn't even mention her diabetes at all.
  
  
• Of course, this topic hasn't escaped us, the diabetes community, either.  Amy wrote about Judge Sotomayor last week, David posted on Diabetes Daily, the dLife Today blog has a piece, and TuDiabetes members are sharing their perspectives, too, like Jenny's post and Ann's discussion.  The JDRF also issued a statement regarding Sotomayor.  And I'm sure there are others who weigh in.
  

Holy media overload.  The Internet is exploding, it seems. 

I admittedly do not know much about Judge Sotomayor or her background other than what I've read over the last week or two about her potential appointment.  But I do know quite a bit about type 1 diabetes after 22 years with it.  And in my opinion, her diabetes shouldn't play a role in this consideration process - at all.

A "defective pancreas" does not mean a defective mind. 

Posted by Kerri Morrone Sparling at 05:15 PM | Permalink | Comments (15) | TrackBacks (0)

"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?"  

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!! 

Posted by Kerri Morrone Sparling at 10:05 AM | Permalink | Comments (10) | TrackBacks (0)

I must thankfully admit - blood sugars have settled down a wee bit (thanks to a 150% basal rate increase that I'm not changing until I'm sure the cortisone is out of my system) and my wrist might be feeling a little better, so things are looking much sunnier in my corner of the Internet today.  About damn time. 

It's time for a little Friday Six action:

1.  Last night I had the opportunity to attend the JDRF Spring for a Cure event at the Metropolitan Pavillion in NYC.  I haven't been into the city in a few weeks, so it was kind of fun to ride the train in and get a little "aaaah" over Grand Central again.  I met up with Gina Capone and we spent a few hours checking out all the trappings, from cheesecake to white wine.  We ran into my former coworker Jon and his wife Lindsey, fellow blogger Allison Blass, and some of JDRF's finest.

The JDRF knows how to throw an event, as the place was packed with people all passionate about diabetes research and a cure.  Including Soprano's star Aida Tuturro, who I spent some time talking to.  (She's a hot ticket!)  Aida has type 2 diabetes and was featured on dLifeTV a few seasons ago.   

2.  Also, best-selling author Brenda Novak is a friend of the diabetes community, thanks to her Novak’s 5th Annual Online Auction for Diabetes Research.  According to the press release, "The auction is held each May is a labor of love for her son who has lived with the disease for most of his life. It is also a month-long online event featuring lunches, dinners and one-on-one meetings with celebrity authors, world-class getaway vacations and state-of-the-art gizmos and gadgets."  And this year, my friends at the Diabetes Research Institute are the sole beneficiaries.  Pretty darn cool.  Visit the auction site and start bidding.  It all benefits a cure!

3.  Today is the last day to enter the Diabetes Mine 2009 Design Challenge, so if you're still thinking about entering to win $10,000, you'd better get cracking!   Submissions can be sent in until 11:59 Pacific time, so there's still time to enter. 

4.  The new issue of diaTribe is out with an all-new SUM Musings - complete with cameos from my mother and my brother talking about diabetes awareness for those who aren't diabetic themselves.  If you aren't a subscriber already to diaTribe, sign up.  Seriously.  I know I'm a columnist there and am very biased, but Kelly and Co. do a fantastic job and I'm a proud supporter of their work.

5.  In a little plug for my office, the production team at dLifeTV is looking for a few good diabetes stories to potentially feature on the show.  Currently, they're seeking college students with diabetes, married couples dealing with diabetes in their relationship, and diabetics struggling with alcoholism.  Check out the call for submissions and see if we're looking for YOU.

6.  And in a little plug for yetis, I think I may have spied one from the train last night.  We were just about to pull into Harlem 125th when I looked down and saw a person sitting on a bench outside.  Wearing a full fur suit.  Like a real fur suit - no joke.  I am not unconvinced it wasn't a yeti.  Which leads me to SkyMall.  Which leads me to this video.  Then this one.  Which leads me into a brain tangent I wasn't prepared for. 

Holy digression.

I'm off to buy a yeti.  Or maybe just take a nap.  :)  Either way, have a good weekend!

Posted by Kerri Morrone Sparling at 10:32 AM | Permalink | Comments (5) | TrackBacks (0)

"So what is this one, the 236.  Did you correct this?  Is this after eating?  I can't really tell."

And I peered at the logbook, chock full of results.  Months of results, all neatly organized by date and time.  Only without food or insulin doses written in, so it was less like a diabetes assessment tool and more like the machine that spins the bingo balls. 

"Ah, I have no idea.  Damn, I have no clue, actually.  I'll assume I corrected it." 

There's not too much difference between writing in all the results the night before an endo appointment and printing out the numbers.

With last week's endocrinologist appointment being a little less than thrilling, I'm on a new game plan to get ready for my June follow-up.  Dr. Brown has asked me to keep a detailed logbook of my numbers.  Not necessarily a food journal, but more a list of blood sugars, insulin doses, and carb intake.  

"You don't need to list the kind of fruit you ate, but if you just put that it was 20 grams of carbs, that would be what we need.  That way we can tell what's causing what."

So I bought a very small moleskine book to record everything. (I love these books. I have one in my purse at all times and I use it to jot down everything from blog post ideas to words I want to remember to look up to reminders that if I don't pay my cell phone bill, they will come for me.)  It's a wee little thing and it fits in my meter case.  Surely it will be covered in blood and have test strips stuck to it by the end of June, but so far it's been one full day and I'm still on the wagon.  (And that, my Faithful Readers, is saying a TON.)

I get burnt out with the details of diabetes.  The whole logging thing throws me off my creative stream of consciousness.  "You mean I have to write this stuff down and analyze trends?"  I'll wear the pump and the Dexcom and do my due diligence, but when it comes to the diabetes nitty-gritty, I often tumble off the wagon.  

It's a lack of patience.  Maybe a lack of desire to make a blood sugar testing moment last more than the five second countdown.  I don't like when I feel so much of my time slipping into the realm of diabetes management.  And I make plenty of excuses not to focus:  "I'm heading to Tucson."  "I'm going home to RI for the weekend."  "I'm having dinner with NBF."  "I'm too busy at work."  "I'm ... no."  

But I'm a woman on a mission.  If I don't ever buckle down and make my A1C my top priority, it may always hover around seven plus percent.  Even if it's a pain in the ass, and even if it's "hard," I owe it to myself and my future family to give it my best.

Poor Chris.  He thought Twitter ate up time?  Wait until he sees how often I have to logbook.  

Posted by Kerri Morrone Sparling at 09:58 AM | Permalink | Comments (32) | TrackBacks (0)

As I mentioned yesterday, I stumbled upon some diabetes relics at my dad's house the other day.  Now I'm totally in memory lane mode.  :)  I found this staple of my early diabetes management:

The "Red Bible."  This book was given to my parents by the Joslin Clinic when I was diagnosed, and it held the supposed answers to any diabetes questions.  (You can see on the cover there where I was practicing spelling "restaurant" many years ago.)  I thumbed through the book and found plenty of recipes and snack ideas, all using the old food exchange philosophy.  Pages and pages of things I couldn't eat, and small sections of what my lunch options were. Half a cup of spinach, one sugar-free popsicle, rice cakes with peanut butter, those peanut butter nab things ... places to buy food scales and measuring cups ... countless pages focusing on food.  I always hated that assumption that a healthy diabetes life was achieved solely through my dinner plate.

There were three pages on handling diabetes in school settings.  No mention of 504 plans or testing in the classroom or anything about how my fellow students would react.  A short description of the symptoms of low blood sugar and how to treat it, but that was about it.

The pages on blood sugar monitoring and management brought me back to my diagnosis days.  When I first started testing my blood sugar back in 1986, we used a machine that took 120 seconds to produce a result and the strips were color-comparison ones that had to be wiped with a cotton ball and then plugged into the meter.  The color comparison chart seems so remedial compared to the UltraLink on my desk or the Dexcom on my hip.   Here's a screenshot of what we'd compare the color pads to:

Not much to go on.  (And the numbers were too easy to manipulate.  I remember wiping the color pads on the strip with rubbing alcohol to make the results seem lower.  I wasn't the most responsible kid.)

The thing that kills me is the lack of focus on the emotions of diabetes.  There were only TWO pages on "living with diabetes."  How stress can affect blood sugar management.  How important the impact of a support network is for acceptance and dedication.  I want to rewrite this Red Bible and flesh out more of the parts that count.  Support groups, diabetes blogs, communities ... this is the future of diabetes management.  Meters have improved a little, insulin has improved a smidge, but our methods of support have leapt by such enormous margins that my future health is already brighter.  

My Joslin appointment is next week.  And believe me, I'll be talking about you guys there.

Posted by Kerri Morrone Sparling at 01:00 PM | Permalink | Comments (17) | TrackBacks (0)

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. 

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.  ;)

Posted by Kerri Morrone Sparling at 10:35 AM | Permalink | Comments (18) | TrackBacks (0)

Quick outreach post this afternoon for you guys: 

I received an email from a very generous reader who mistakenly received 550 Freestyle strips (instead of Freestyle Lite strips), and their insurance company doesn't want the strips returned.  This reader wants to offer these Freestyle strips up to a PWD in need. 

So if you are a Freestyle user and you are having some trouble making ends meet on the diabetes financial front, send me an email at kerri (at) sixuntilme (dot) com and I can put you in contact with this kind reader.  They're willing to pay shipping to get the strips sent out, and they would really like to help a fellow PWD in need.

Thanks!

UPDATE:  We found a home for these strips.  Thanks, guys!

Posted by Kerri Morrone Sparling at 03:48 PM | Permalink | Comments (4) | TrackBacks (0)

Yesterday at lunch, I was browsing at one of my favorite stores and picking through a pile of spring sweaters.  (Buy one, get one 50% off!  I'm a sucker for a good sale.)  So I find two sweaters that are pretty and springy and have that nice, soft cottony feel that you want to rub against your cheek.

Then that feeling hits.  The one where my jacket felt warm and heavy against the spring chill but suddenly made me feel like it was a fabric tanning booth - too hot, too heavy, and like the sleeves were thick with mud.

"Excuse me?  I know it's a weird question, but do you have any juice or candy in this store?"

The pregnant woman behind the counter gave me an odd look.  "I don't ... hang on ... um, I have half of a mini Milky Way bar?  Is that okay?  You just hungry, sweetie?"

"No."  My tongue was too big for my mouth, making it hard to talk.  "Can I just leave these here for a few minutes?  I'll be right back."

Walking with determined, focused steps, I went outside to where my car was parked and unlocked the door.  Leaning in the passenger side, I grabbed the bottle of glucose tabs from the center console.  

"Damn it, two?  Only two are in here?"  The bottle was almost empty, save for two lonely glucose tabs.  I poured them into my hands and ate them at the same time, the glucose tab dust coming out and snowing all over the passenger seat of my car.

"Gee whiz," I said.  (What's that?  Not kidding you on that one?  Fine.  I dropped an F bomb right there, outside of Ann Taylor.  I have no class.)  I noticed a Panera Bread next door so I slammed my car door and walked over there, listening to the Dexcom blaring from inside my purse.

There was a line for lunch.  Four cashiers were working furiously, but the low was creeping up just as fast and my legs were beginning to buckle.

"I need orange juice.  I'm diabetic and having a low blood sugar.  Can you please help me as quickly as you can?"  I stood there in my work clothes and my coat, with my grown-up purse over my arm and started to cry because I couldn't function properly and I was becoming more and more confused.  Not sobbing, not whining, not outwardly breaking down, but big tears rolled out of my eyes without permission and headed for my jawline.  

The boy behind the counter was taken aback.  "Stay here.  Stand here.  I'll be right back.  Don't move."  He ran and returned with a glass of juice.  I moved toward him like goldfish in a pond going for crumbs of bread. 

He watched as I drank the entire glass without stopping, knowing that people in line were watching me and staring and I couldn't bring myself to care.

"You good?  You seem better already, right?"  CounterBoy answered his own question.  "You're good.  You're fine." 

I fumbled with my wallet.  "How much do I owe you?"

"Miss, it's okay.  I'm happy to pay for that orange juice myself.  Please."

"No, I'm diabetic but I have a job.  And I appreciate your help."  The novocaine of the low was starting to wear off a bit, just by knowing the juice was in my system.   "I'd really like to pay."

"Okay, let's just call it a small, okay?   That's a dollar.  A dollar is fine."  He punched the keys of the register.  "$1.05" came up on the digital screen.

"A dollar five.  Okay."  I handed him a dollar and dug around in my pocket for a nickel.  "Here you go.  Exact change.  We're good."

He put the money in the register and wiped his forehead with his wrist.  "You sure you're okay?  Do you want to sit for a minute?"  A guy waiting in line mumbled something about 'flirting on your own time.'  CounterBoy raised an eyebrow.  "Sir, this is a medical emergency.  I just saved her life.  Your sandwich?  Little less important at the moment, okay?"  

He turned back to me.  "You good?"

"I'm good.  Thank you for your help.  I really appreciate it.  You saved the day, man."

"I did.  I saved the day."  He squared his shoulders.  "I'm going to be employee of the month!"

Posted by Kerri Morrone Sparling at 09:46 AM | Permalink | Comments (62) | TrackBacks (0)

"What are you on?"

Four sets of hands fumble for their hardware.

Me:  "I'm on a 522."

Karen:  "I have the other one?  The bigger one?  722?"

Erin:  "I've got Minimed, too."

M:  "Animas ping!"  (She reaches into her shirt and pulls out a pink pump.)  "I bet you didn't even know it was in there." 

Where does the question "What are you on?" get everyone to flash their pumps, other than at a dinner with fellow diabetics? 

Last night, four of us (me, Karen, Erin, and M) met up for another Fairfield County dinner at a townie bar in western Connecticut.   Despite the fact that none of us were locals, the townies in the bar accepted us and allowed us to occupy a table for two hours and chat about pumps, pregnancy, and coffee addictions.  (Dear Waitress,  Sorry I yelled to get your attention.  I was excited.  It was coffee!  I'm sorry.)  It's nice to hang with nice people who completely understand the need to briefly bleed before eating, and who get it when your "hose" is exposed. 

It has become a comforting tradition, with the attendees fluctuating dependent on the weather, the season, people's work schedules, etc, but there's always at least a handful of us who have a few hours to spare with new friends.  Note:  Beware of stories taking a decidedly non-diabetes turn, i.e. storing lipgloss without pockets.  ;)

Are you interested in meeting up?  Are you in Fairfleld County, CT?  Email me at kerri (at) sixuntilme (dot) com and we'll add you to the email list!

Posted by Kerri Morrone Sparling at 10:07 AM | Permalink | Comments (14) | TrackBacks (0)

I know my daily diabetes stuff produces a lot of waste, like the test strip I use every time I prick my finger and all the packaging that comes along with each disposable insulin pump infusion set. 

But it wasn't until I changed my pump and my Dexcom sensor at once that I realized how much carnage I leave in my management wake.  

Exhibit C (for crap, holy):

If you scoot over to Flickr, you can see each item flagged in the photo, but the basic gist is that two small bits of technology attached to my body creates a lot of waste.  (The Blackberry is in the photo purely because I forgot to move it.  It isn't related to diabetes management.  Then again, with the number of emails I'm sending from that thing on an hourly basis on the climb, maybe it is.  Digression?  Yup.)

Other PWDs and parents of PWDs (POPWD?) have talked about the insane amount of diabetes-related garbage before, but this one night really showed me how so little goes such a long way - and not in a great way.  And with Earth Day coming up at the end of April, I'm extra-aware of the mess I make sometimes.  Do you guys put your stuff in a sharps container, or do you throw these things out?  I used to be so good about clipping syringe tips and filling those coffee cans and taping them shut with electrical tape, but the last few years have produced medical waste that doesn't look as "druggy" as the orange-capped syringes of my past diabetes life.  ;)

Once, in college, we had a party and threw out a lot of beer cans.  (There were seven of us in one house, okay?)  During the night, animals got into our garbage and we woke up to beer cans and - oh crap - syringes all over the front lawn.  I.  Was.  Mortified and have been paranoid ever since.  How do you guys dispose of your diabetes carnage?  I need some tips, because I'm getting sloppy.

(Also also, SUM may have some downtime this weekend, as I'm moving some web bits around.  So if you stop by over the weekend and hit a 404 or 500 error, please be patient.  I should be back up by Monday morning.  Thanks, and have a good weekend!)

Posted by Kerri Morrone Sparling at 02:42 PM | Permalink | Comments (22) | TrackBacks (0)

Awareness days - we have a pile of them.  But because I am a diehard diabetes advocate, I believe in these moments of advocacy (see also:  World Diabetes Day, Diabetes Month, Raise Your Voice, etc.)

So today is Diabetes Alert Day, and the intention of this day is aimed at people with pre-diabetes and people at risk for developing type 2 diabetes.  There are a number of fine, clickable resources out there to mark this day:

• dLife has a list of "getting to know diabetes" resources, including a quiz to screen yourself for type 2 diabetes.
• The American Diabetes Association encourages people to become volunteers and asks "Are you a risk taker?"
• Novo Nordisk is encouraging people affected by diabetes – including patients, caregivers and those at risk - to learn more about the condition, and to take steps to manage their disease and protect their health. 
  
• People in Plano, TX can get free nutrition education classes through April 21.
• Some Louisiana residents can get their blood sugar checked for free today!
• And the people at Gold's Gym have a free exercise guide to promote their Getting Fit 101 campaign.
  
• The ADA in Indianapolis is hosting a free breakfast geared for business leaders who want to address the significant economic impact of diabetes within their businesses.
• Even Dear Abby is getting an earful from the President of the ADA.

The alert is being sounded today, and if you are affected by type 2 diabetes, or if you are part of the at-risk population, there's no better time than now to get healthier.

Posted by Kerri Morrone Sparling at 09:00 AM | Permalink | Comments (4) | TrackBacks (0)

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!) 

Posted by Kerri Morrone Sparling at 09:23 AM | Permalink | Comments (10) | TrackBacks (0)

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: 

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. 

Posted by Kerri Morrone Sparling at 10:24 AM | Permalink | Comments (22) | TrackBacks (0)

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:

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!)

Posted by Kerri Morrone Sparling at 10:58 AM | Permalink | Comments (36) | TrackBacks (0)

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.)

Posted by Kerri Morrone Sparling at 01:50 PM | Permalink | Comments (16) | TrackBacks (0)

I've had about three solid weeks of good blood sugar control, with just one or two lows and not many excessive highs.  I celebrated regularly, because this kind of even keel isn't common for me.  And because I'm in hot pursuit of a lower A1C.

So you can imagine my frustration when I had a 400+ blood sugar with no detectable cause - until I realized the pump tubing hadn't clicked into place properly after my shower.  (Something about the sweaters on my teeth and the fact that I was falling asleep face-first into my laptop didn't tip me off, apparently.   I had to wait until the realization of "Hey, haven't you peed three times in an hour?" hit me in full.)

Posted by Kerri Morrone Sparling at 09:16 AM | Permalink | Comments (41) | TrackBacks (0)

Well this has never happened before.

Click.

Subject line:  diabetes 

Email:  rid myself from insulin lowered glucose from 600 mg/dl to avg of 69 mg/dl to118 mg/dl with an A1C reading from11.8 to 5.8 in 190 days check it out [name and URL redacted] doesn't cost a thing...hard to believe but that's life.... 

Fantastic.  Another spam peddler.  But I'm not looking for a war this morning, so I just filed it into the email folder called "Spamtastic" and proceeded to check my other new messages.

Click.

Subject line:  sorry

Email:  I email you before I read your blog sorry that you have a difficult life with diabetes 1 and am sorry I tried to help by referring a wed site to you as you stated "don't e-mail you with snake oils" it's just that somewhere somplace there is help for us for me it's the referral, Your so positive please stay that way and keep helping others as i shall. Sorry for imposing on you

Wait, what?  An apologetic spammer?  They read the How to Pitch to Bloggers post and the one about snake oil?  And they admitted that they spam people for the referral bonus?  Someone who is sorry that they imposed?  And bothered to email me to follow up?

This is a milestone.  I'm not sure what kind, but it's definitely never happened to me before.  Are we getting through to these people?  Are our raised voices actually being heard?

Posted by Kerri Morrone Sparling at 09:34 AM | Permalink | Comments (5) | TrackBacks (0)

As I've mentioned countless times before, I love the CWD forum folk.  They are compassionate, kind, and always doing their best to raise awareness for diabetes.

I received an email from one of my friends at CWD this morning about Michelle Rago, a CWD mom who is aiming to make a difference using her camera ... and her heart. 

Here are the details: 

"One of the longtime CWD moms, Michelle Rago, has entered a contest - a photography contest. The winner wins $50,000 to photograph her proposed subjects. Her proposal is to document people with type 1, doing both type 1 type things and their favorite things.

In her words: 'I would like to photograph children with Type 1 diabetes doing two things: 1. testing their blood sugar or injecting insulin and 2. doing their favorite thing. I would like to exhibit the photos to raise awareness about Type 1 diabetes.'"

Right now, Michelle is No. 3 in the contest, behind by a good number of votes, but we can help her climb to the top!  Voting goes from March 3 - April 3, so there's time to rally the diabetes community behind Michelle and help her win and raise awareness for a cause we all care so much about.  

Go to the Name Your Dream Assignment site, register, and cast your vote for Michelle.  A win for her is a win for diabetes advocacy!     

Posted by Kerri Morrone Sparling at 10:40 AM | Permalink | Comments (8) | TrackBacks (0)

7:09 am:  Alarm goes off again.  Snooze one more time, grab my meter from the bedside table, and hope to test when it goes off again.

7:16 am:  Okay, this is it.  No more snooze, test blood sugar. Whatever the result, it kind of sets the tone for my day.  I’ll correct it, treat it, or celebrate it, depending on the number.  Calibrate the CGM, disconnect the pump, and head off to the shower.

7:20 am:  Connect CGM to my bathrobe on the bathroom door so it’s close enough to pick up a signal while I shower.  Shower quickly so I’m not disconnected from the pump too long.  Carefully dry off to keep CGM sensor and pump site from becoming loose.

7:30 – 8:15 am:  While getting ready for work, put at least underpants on to have something to hook the pump to.  Dress in clothes that make me feel comfortable, fashionable, and able to wrangle in any diabetes technology I’m trying to wear. 

8:20 am:  Grab enough snacks to get me through the day, but make sure the food is d-friendly enough to keep my numbers in line.

8:30 am:  Drive to work.  Check the CGM to ensure I’m not sailing out of range.  For the record, my car has glucose tabs in the glove compartment, in case I go low.

8:45 am:  Time to buckle down.  I’ve got my coffee, my computer, and my meter at the ready.  During the course of my morning at work, I’m testing my blood sugar every hour or so to make sure I’m in range.  Sometimes the blasted dawn phenomenon grabs me and I end up fighting a high for hours.  Other times, a tricky little low sneaks up on me and I have to down some juice and then muddle through the aftermath.  And lots of times, my body behaves and numbers hold steady.  But I still have to check and confirm this, so I’m still actively maintaining diabetes stuff.  And I usually have a snack in the morning at some point. 

Noon-Thirty:  Lunch time.  I test beforehand, I react to this number, and I try to anticipate what I’ll be eating for lunch.  Most often, I eat carbs at lunch, either in the form of a sandwich or soup or something like that, but food is always consumed at this time.  (I get hungry!)  

1:30 – 5:30 pm:  Work afternoon.  Looks a lot like the morning, only for me it tends to be a little more even with blood sugars and a little less even with stress levels.  (Something about the afternoons at work tend to bring on the meetings, wacky emails, etc.  Either that, or maybe in the morning I’m too sleep to mind the difference.)  Lots of testing blood sugar and/or scoping out the CGM line during this period.

6:00 pm:  Homeward bound.  But it’s not over, yet.  From here, I have about 30 minutes to change up to head out to the gym, and make sure my blood sugars are high enough to take on an hour of exercise.  (This is one of the only moments in my day when I’m intentionally a bit higher.)  Aiming to be at around 180 mg/dl, I head off to the gym toting my bag crammed with my meter, music, water bottle, CGM receiver, and a fast-acting glucose stash. 

7:00 pm:  (We’re here already?  Man, this day goes by fast.)  Gym is ovah.  Time to test before heading home to see if I need to act on a number, make sure I’m good to disconnect and take a shower. (Yes, two showers.  I hate to stink.)  A shower is followed by dinner.  Dinner is followed by testing.  Testing is hopefully followed by sugar-free pudding with cool whip or something.  ;)

From Dinner to Bedtime:  Evenings are sort of status quo, with lots of options.  Heading out for a movie?  Going into NYC for the night?  Grabbing a drink downtown?  Staying home and working on computer crap?  Perhaps some [hey, something shiny!]  Or grocery shopping, changing out the CGM sensor, cooking (ha!) ...  Whatever the hours of my evening are filled with, I’m still keeping close to my meter and maintaining an eye on my body.

Before Bed:  Go through the whole before bed routine (washing face, flossing, brushing teeth, fighting to keep the cat out from underneath the bathroom sink), and then head into bed.  One of the last things I do every night is test my blood sugar and check my pump reservoir and battery life to ensure I'm good for the night.  After that, I try to fall asleep, with all hell usually breaking loose when the cats run races at the foot of the bed around two in the morning.

Sleep:  Awesome.  Hopefully, there aren't any hypoglycemic episodes throughout the night.  If there are, the Dexcom usually BEEEEEEEEP!s until I wake up.  (No snooze button on that thing, that's for sure.)

7:00 am:  Lather, rinse, and repeat. 

A team of students contacted me and asked me to tick through a day in my life with diabetes.  I tried to do a standard day - one without a wicked low or high - but it's hard.  Variables come raining in from everywhere, and it's nearly impossible to account for all of them.

I've written those kinds of "day in the life" posts about diabetes before, but they never really capture what can and does happen.  I even attempted to do a video, but it didn't cut it, either.  It's hard to show how much instinctive management comes into play, like those moments when we don't realize we're managing diabetes (but we are). 

How would you describe a day in your diabetes life?  Or, when you try, do you get tangled in the same set of variables?  How do we describe something so random and far-reaching?

Posted by Kerri Morrone Sparling at 11:23 AM | Permalink | Comments (17) | TrackBacks (0)

There is no way I’m going to name the person who contacted me, nor would I even think about linking out to their ridiculous product.  But I received an email over the weekend from a tool who I will call Peddler.

Peddler started their email to me by saying, “Hello Kerri.  You can cure diabetes.”  Then there was a link to a YouTube video.  (With instructions on how to cure me, I assumed.)  I clicked through and watched their video and did the whole “rolled eyes” routine.

I am a relatively well-educated patient.  I am by no means a doctor, but I could pretend to be one for at least 8 minutes (until someone asks me to recommend treatment options or draw blood, and then I pass out and they find out I’m a lowly editor).  False claims of a “cure” don’t sit well with me, so I decided to email Peddler back and see what kind of web he would weave.

“Dear Peddler.  I have type 1 diabetes.  I have been diabetic for over 22 years.  Are you telling me I missed a cure?  Best, Kerri.”

His response:  “Yes, it must be possible.  Although it’s not easy.  Did you watch the video?  You can try [product name] and [other product name] to cure diabetes type 1?  The [product 2] keeps my blood sugar between 5 – 6 (European measure).  When normally it will go like a roller coaster.  It are the most advanced products ever made.  I use them myself.  You can find them here.  [Link]. “

My goodness. 

My response:  “You can cure my type 1 diabetes when no doctors at the Joslin Clinic, no researchers, etc. have that ability?  Can I stop taking insulin when taking your recommended product?  My body doesn’t have active islet cells – you can reverse this?  How much does your product cost and what is your personal involvement?”

Peddler’s response:  “No sure, you can’t stop taking insulin.  But if you take the product it might reverse it over time.  I have absolutely no involvement into this.  I just use it myself.  Have been looking for years to try and find a cure myself.  But you must read the information and watch the video.  But there are a lot of products and research outside of the conventional research.”

Then Peddler loses it a little bit, emailing again:  “[Another guy’s name], the health ranger, healed himself of type 2 diabetes through dieet and supplements.  You can read a lot of information on [website].  Do you know anything about farmaceutical companies and their research?  They only want to make money.  They cannot use natural vitamins and minerals because they cannot pattent them.  It’s a big money industry.  I was a shareholder, been very active on the stock market.  I know a lot about these companies.  It’s just like the oil industry.”

The snake oil industry that wants in on my “dieet” and “pattents” and “farmaceuticals?”  And what the hell is a "health ranger?"

I emailed him back:  “It will reverse my need for insulin?  Type 1 diabetes means my insulin-producing cells were attacked by my own immune system.  This product can reverse my own auto immunity?  I am shocked.  Are you involved with this supplement company, because I have to be honest - I doubt the integrity of your intentions.”

Radio silence.  Maybe he had to call back the Mother Ship for guidance. 

Then Peddler comes back out at me.

"Ok, no I'm really not. I'm 27 years old, working in a pipe factory here in Holland. I really am not involved into this company,  I'm a person just like you."

Then he sent me YouTube clips of different people talking about the supplement, and others of people showing how a certain diet plan "cured" their diabetes.  How if I just authorized some payments from my PayPal account, I'd be right ready for a life without diabetes.  (Come on, Mr. Pipe Layer from Holland.)  After clicking around for a while, I had a good sense of how much snake oil is being peddled to people with diabetes. 

And the thought made my stomach spin.

I can't help it.  This shit makes me crazy!  Don't market your false cures to me.  Nothing I eat is going to cure me.  No amount of raw vegetables or coffee or protein powder or amino acids or special high-fiber, low carb, strapless, backless nutrition bars.  Unless you have a way to keep my immune system from taking out my body's own insulin-producing cells, do not email me.  Stop preying on people with diabetes.

And for crying out loud, use spell check, would you?  

Posted by Kerri Morrone Sparling at 10:39 AM | Permalink | Comments (31) | TrackBacks (0)

Hey guys - I've been wanting to share this news for weeks now but just received the "green light."  I'll be at BlogHer '09 this summer in Chicago as part of the PatientBlogger panel!  (I'm grinning so big right now that my face actually hurts.) 

Along with two other panelists (who are announcing their good news tonight or tomorrow, so I won't steal their thunder), I'll be representing the diabetes blogosphere PROUDLY, talking about the power of PatientBlogging.  Here's the panel description:

Identity/Passions: PatientBloggers - You Are Not Your Disease, You Just Blog About It Every Day: 

Chronic or acute disease can change your life overnight…and make you feel as though you’ve lost control of your own body. PatientBloggers find support, information and resources, and regain a sense of control via their blogging. But are there also down sides? Privacy concerns abound. Being identified as just a person with a disease can feel confining. And what if you’re cured or in remission? Where does your blogging (and more importantly: That close-knit, supportive community you've developed) go from there?

Posted by Kerri Morrone Sparling at 08:28 PM | Permalink | Comments (14) | TrackBacks (0)

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 sev