Six Until Me.

Diabetes 2.0: It Ended in a Hammock.

Tue, 10 Nov 2009 09:00:32 -0500

Over the weekend, I found myself on a plane again. Yes, another xanax-free trip at 33,000 feet, this time heading to Fort Lauderdale, FL for the Diabetes 2.0 conference, put on by the Diabetes Research Institute.

Three quick things:

First, never watch the Disney movie "Up" while on a plane and pregnant. I found myself sniffling and crying to the opening of that movie, headphones in my ear and my hands clutched firmly around the BSparl. Oh Disney, you made one sad, lovely cartoon, my friends.

Secondly, Tom Karlya (far right in that first photo and dapper as can be in his yellow tie) was responsible for wrangling in all the bloggers and he was a wonderful host. Thank you, Tom, for everything.

Thirdly, and most importantly, if you want to see where a diabetes cure may be born, it's time to take a tour of the Diabetes Research Institute.

I've had type 1 diabetes for a long time, and over the last two decades, I've seen a lot of doctors. I've also done a lot of diabetes walks, received plenty of mail asking for donations, and have been more recently exposed to every possible snippet of public relations "awareness" campaigns for diabetes. But in all my years at Joslin and all my exposure to the info (for better or for worse) out there, I've never seen an actual research lab. Sure, Joslin has them in the building, but I'm always rushing to make my endocrinologist appointments on time - I've never been invited to tour the research floors.

(The diabetes advocacy crew and the DRI staff: More photos on Flickr.)

But at the DRI, that's just what we did. Diabetes bloggers and advocates, pictured above, hung out with research scientists and talked about exactly what was being done to move us towards a cure for type 1 diabetes. Over the course of our three days at the DRI, we saw the research labs, heard about the newest advancements in cure technology, and attended presentations about the science behind a cure. Some of us even spoke at panels of our own, talking about the impact of the diabetes community on our personal lives, and sharing our diabetes stories with the folks who attended the conference. (We also Tweeted the hell out of this.)

Bob Pearlman, the President and CEO of the DRI, said this, and it stuck in my head and stayed there all weekend long: "Our happiest day will be when we take our name off the door and go do something else."

These guys are cure driven, and their mission remains true - cure diabetes.

I had the pleasure of speaking on the Connecting Online panel, with Manny Hernandez, Jeff Hitchcock, Scott Strumello, and Ellen Ullman. We talked about the needs filled by online connections (can you say "massive support network?"), how being online has helped us cope with a life with diabetes, how the online community has impacted our diabetes care, and what we thought of the DRI.

Jeff, our moderator, gave us the questions in advance, except for that last one. (And the one where he asked us about our blog traffic numbers - tsk tsk. That's like asking a lady her weight! ;) ) So, while on the spot and being asked about our DRI host, I managed to put my foot in my mouth yet again.

"I've received all the press releases about the 'cured diabetic mouse,' but today I actually got to see the mouse. The cured mouse! Seeing and meeting the people who are actually working to cure diabetes was like receiving a golden ticket and getting to see inside the Chocolate Factory ... whoops, that's a bad pun ... but it's amazing to see the cure in action."

Thankfully, people were patient with my bad turn of phrase, and they laughed, but I did mean it. Seeing things like islet cell encapsulation devices and the sterile rooms where islet cells and pancreases are actually transplanted was amazing. I'm not big on waiting for that cure and assuming that a biological cure for diabetes will come to pass in my lifetime, but I actually left the DRI with some hope. Maybe if not for me, then for the baby that grows inside of me.

Thanks to the Diabetes Research Institute for flying us down, putting us up, and listening to everything we had to say. I'm grateful to have been a part of this conference, and I'm really excited to see what kinds of developments come from the DRI in the next few years.

Manny, Sara (aka "Saaaahraaaah), Kerri, Scott S, Ellen, Gina, and Jeff

And before Chris and I flew home to Boston, we spent an hour lounging in hammocks outside of the hotel. It was a very relaxing way to end an inspiring weekend. (We also saw lizards. But that's not exactly relevant. They were big, though!)

(One last thing - to Juliana, the very nice dentist who I met after the panel. THANK YOU for your card and for your very kind words. It was a pleasure to meet you! Good luck with your A1C, and I hope to see you again at another event!)

Two Heartbeats on D-Blog Day.

Mon, 09 Nov 2009 11:39:13 -0500

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.

Melted Peanut Butter Cup Cat.

Sun, 08 Nov 2009 22:11:57 -0500

If someone took this:

and threw it in the dryer with this:

and this:

It would become this:

Abby looks like she's made out of a melted peanut butter cup.

That is all.

Diabetes Archives: The Diabetes Police.

Sat, 07 Nov 2009 08:26:17 -0500

This cartoon took FOREVER to make, complete with bouncing chocolate chip cookie and a broccoli tree, and it's pretty terrible. But it still makes me laugh. So I'm revisiting this one - The Diabetes Police video.

Diabetes Archives: An Open Letter to my Pancreas.

Fri, 06 Nov 2009 08:47:35 -0500

I'm in my last batch of travel for this round - thank goodness - but I've been really short on time lately and it's been tough to post. So I did a quick comb through the SUM archives and I'm revisiting some of my favorite posts from back in the day. This one, An Open Letter to my Pancreas, originally ran on November 15, 2006. (Before my wedding, as you can tell by the old "Morrone" there in the return address!)

Dear Pancreas,

I’m not sure what the hell happened to you, but you’ve taken it upon yourself to stop working. You did have that job for about six years, where you got up early every day and produced my insulin, but apparently that was too much for you. You were laid off or fired or something. Don’t blame it on that virus again. I think you just slept through the alarm and were let go and you just don’t want to admit it.

All you do is sit around, hiding out behind my stomach, reading smut novels and watching reruns of The Facts of Life. Sure, you push out the occasional juices and you can sound important when you talk about “trypsinogen” and “chymotrypsinogen,” but you and I both know that you don’t do much. It’s not even like you empty the dishwasher or anything. The least you could do, after I’ve been testing blood sugar levels and bolusing all day long, is have dinner on the table when I come home. Is that too much to ask?

Oh no, you’d rather just sit there like a bump on the duodenum, letting me do all the work. Don’t worry, Pancreas, I’ll make sure I count the carbohydrates in every little scrap of food and bolus accordingly. No, no, don’t get up. God forbid you raise an islet these days to let me have a cup of coffee.

And I don’t care that you’re jealous of The Pump. I’m sick of listening to you whine about it. “She gets all the attention.” “Everyone loves her best.” “You never made me a special pocket in your skirt.” Sigh ... Pancreas, if you would just do your job, I could toss The Pump forever.

Remember what it was like when you were working? How happy we were? I was playing outside and drinking the Bug Juice Kool-Aide that Grammie made and you were secreting insulin and everything was cool. We had fun, didn’t we? Just you and I? A Girl and her Pancreas? No pump, no measuring cups, no medic alert bracelet. Just you and me.

And now this: Unemployed. Lazy. Would it kill you to even just make some glucagon? Or maybe cover a meal or two?

I miss the way things used to be.

That’s it: you need to find a job. I’ve had just about enough of this. Tomorrow morning, we’re going to load your resume onto Monster and see what happens. I know that the Wonkas are always looking for help.

Signed,
Kerri

Cracked Insulin Pump.

Thu, 05 Nov 2009 11:40:34 -0500

A few days ago, I noticed a hairline fracture in my insulin pump, starting right underneath the "Esc" button and stemming down into the insulin reservoir window.

And the day after I noticed it, the crack spidered out just a teeny bit more. It's weird - I am actually able to look at this crack and think, "Wow, how did that happen," forgetting that the insulin pump is attached to me, literally, twenty-four hours a day. I could have banged into a door jam (not that I ever do that - nope, not me), dropped the pump on the floor, jostled it against a bag or a package, or, for all I know, Siah could have gone at the thing with a hammer. No telling how this little pump ended up wounded.

I called the Minimed customer service line and pleaded my case. Thankfully, since my pump is under warranty until 2011, they said they'd overnight a new pump my way.

"It's a refurbished model," the slightly sleepy-sounding service rep told me, and I could hear her fingers tapping against her computer keyboard as she typed up our discussion.

"Not a problem. I've had one once before."

I'm all for recycling, and I also believe in the value of "certified, pre-owned" merchandise. But I thought about the places that this pump has been with me. This one insulin pump was built into my wedding dress, traveled to Spain and visited a movie set with me, and has been a part of my first pregnancy. It comes to bed with me every night and it has been tucked close against my body for countless hours at a time.

Kind of intimate for a machine, eh?

I can't help but wonder where this refurbished pump has been. Is it from across the country, maybe a California pump? Has it ever experienced a freezing cold New England winter? Has it ever been with a woman before? Can it tolerate my stupid cats? (Can it survive awkward me?)

The new pump is scheduled to arrive in about an hour, just in time for me to swap out my old pump before heading to Florida for the DRI's Diabetes 2.0 conference. And I'll send the old one back to be refurbished and distributed to another clumsy PWD.

Thanks for the quick turnaround, Minimed! I'm off to Florida!

UPDATE: Just kidding. Minimed missed the overnight and now the pump is arriving tomorrow. But I won't be able to access it until I return on Sunday afternoon. Here's hoping this cracked pump can make it until then. Minimed - FAIL.

Dexcom and Desperation.

Wed, 04 Nov 2009 11:25:12 -0500

For a few weeks, I had a tough run with the Dexcom. Out of the five sensors I'd used in the last three weeks, three of them had gone kaput on me. And by "kaput," I mean that I'd put in a new sensor after Las Vegas and it instantly gave me "???" instead of blood sugar results. I've seen the triple question marks before, but usually the sensor synchs back up and rights itself.

But this time, the question marks hung out for ages. Like hours, and then when it would finally ask me to calibrate, it would work for about 45 minutes ("work" being a loose term here, because it had numbers that were over 180 points off from my actual blood sugar) and then the SENSOR FAILED error would come ringing up. Stupid error.

I thought it was just the one sensor, but it happened three different times in three different weeks. Using the Dexcom, it seems, has helped me get my A1C act together, and since becoming pregnant, the Dex has helped bail me out of many, many unpredictable low blood sugars. (Lows plagued me during the course of the first semester, relentlessly. 50s, 40s, and 30s coming to stay for a visit without calling first. No symptoms, no warning, and no predictable time frame. Without the Dexcom, I wouldn’t have woken up in time for those lows, and I don’t like to think about how far I could have dropped while sleeping. Whoops, digression. Sorry about that!)

So I called my contacts at Dexcom, because they are aware of my pregnancy and how paranoid I’ve become about things lately. (Actually, I emailed them at 2 in the morning because when the third sensor in a row kicked out on me, I flaked. I sent them one of those “Sorry I’m a lunatic, but …” emails, and thankfully they got back to me early the next day.)

After a few email threads, Dexcom decided to FedEx out new sensors and help get me back on track. And for some reason, these worked. I’d heard from the Twitter crew and from some comments here on SUM that there appeared to be a certain batch of sensors that just weren’t cutting it. I don’t have the “official word” on what the deal actually was, but I do know that a certain box of sensors just weren’t working right. And now that I’m cracked into a new box, things appear to be working okay now.

Which is a relief, because the Dex caught a 29 mg/dl as I was getting ready to leave the house the other day.

“Holy shit, I’m 29?”

Chris wasn’t home at the time, so I panicked a little bit. Not a single symptom was on board, and I was freaking out. I tested again to make sure, as I drank grape juice straight from the carton. Yup, 31 mg/dl. Dexcom was blaring its head off.

Weird things happen when you’re low and don’t realize it. Like you find yourself sitting at the kitchen counter, eating a whole bowl of Puffins cereal in one gulp. Chris came home as I was inhaling carbs.

“Are you okay?”

“Yeah. I’m 29. No symptoms. This sucks. I seem fine, don’t I?”

“You do. You seem completely fine.” The Dexcom went off again.

“Good thing that’s working again. Did you have juice?”

“Drank it. I’m eating the whole box of Puffins now.” Grinned through a mouthful of carby goodness.

I’ve been wearing the Dexcom on and off for two years now, but almost 24/7 for the past six months. And not having it on, or having its integrity compromised through technical failure, etc. makes me feel absolutely naked. It’s not a cure, it’s not a guarantee for tighter blood sugar control, but it’s the safety net I was hoping for, and now that my basal rates, insulin:carb ratios, and blood sugar trends seem to be unpredictable during these months of pregnancy, I’m leaning on it more now than ever before.

[Dexcom disclosure]

Taste, Now With More Math!

Tue, 03 Nov 2009 13:00:28 -0500

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:

Lovenox, Heparin, and WTF.

Tue, 03 Nov 2009 07:50:45 -0500

During my endocrinologist appointment last week, I brought up that itchy, scratchy Lovenox rash to my OB/GYN, Dr. T. And she wasn’t comfortable with how my body reacted.

“That rash is from two weeks ago? How does it feel now?”

“Less itchy, that’s for sure. But it got all hivey and wouldn’t relax, not for about a week. It itched like mad.”

“I don’t like that. I don’t want you to continue to take Lovenox, especially if it gave you that reaction. Who knows how bad the reaction could be the next time? I want to switch you to something else.” She started to write on my chart. “Heparin could be another alternative for you.”

“Okay, what’s the difference?”

She told me that both Lovenox and Heparin are large-molecule drugs that don’t pass into the placenta, so Bsparl is safe, and also that they both serve the same purpose: to protect me and my baby from blood clots (the risk of which increases with both Factor V and pregnancy).

But you guys know how I am by now. I feel weird taking extra drugs, and I’m very conservative about adding more and more Rxs to my daily routine. Also, consulting with Dr. Google brings me all this scary information about how Heparin is a category C drug, meaning it could have effects on the baby. I don't know what's what, but I do know that I need to trust my doctor and her years of experience over a Google search. (Right now, I'm wondering if I can bypass these drugs altogether and just work out in the airplane bathroom for the whole flight. Kidding. Sort of.)

Yet I still find myeslf feeling uneasy, and looking to see if any of you have had personal experience with Heparin. I'm very WTF about this and confused as can be. Right now, I’m only on insulin, pre-natal vitamins, and blood pressure meds (don’t worry – safe for baby), but according to Dr. T, I’ll be taking something to help protect me from clots for six weeks after BSparl is born. (Great.) So now is a good time to figure out what works best for me.

Once again, I’m clueless about what to expect. I’m sorry to keep pestering you guys with all these questions, but when it comes to anything other than insulin, I’m lost. When I wrote about Lovenox before, you guys were invaluable and I learned a ton (even brought some of it up to my doctor). Now I’m asking once more – has anyone ever taken Heparin? Any weird, itchy side effects? Any burning at the injection site? Any … anything?

(And BSparl says hi. He just sent a messenger pigeon to me from the womb. He is baking cookies in there. Busy little peanut.)

H1N1: Fighting for the Vaccine.

Mon, 02 Nov 2009 08:03:34 -0500

Last week, I toddled my pregnant self up to the Joslin Clinic for my endocrinologist appointment and an ultrasound with my OB/Gyn. And as excited as I was about the ultrasound and the opportunity for Chris and I to see our baby kicking around in there (more on that later), I was just as excited about the H1N1 vaccine.

I know.

I can't believe I'm saying that, either. Yes, this is the same Kerri who wrote about feeling "eh" about the flu shot a few weeks ago. But a few things have come to light in the last couple weeks that have changed my outlook on things.

Like the fact that the Joslin Clinic has been riding me about getting this shot because of my high-risk situation, being both type 1 and pregnant.

Or the fact that every healthcare professional I spoke with at last week's ePatient conference kept asking me, "You are getting the H1N1, right?" and the look of concern when I said, "I haven't received mine, yet."

Or the very scary fact that pregnant women, regardless of any chronic illness, are singled out as one of the highest risk groups out there.

I'm not one to leap without looking. But I'm also not one to put my baby at risk if I can help it, so when Joslin said there was an H1N1 vaccine available to me, I jumped at the chance to get it. Seems like this vaccine, for some completely ridiculous reason, is not being made readily available to people who need or want it, so if there was one available to me, I was taking it.

It was unnerving, knowing they were injecting me with a virus. A dead one, of course, but still, with all the information circulating out there about the pros and cons of the H1N1 vircus, it's hard to know what's true and what's just speculation. Or, unfortunately, what's purely fabrication. In any event, when I heard about a little girl in my home state who, at the age of 12 had being diagnosed with H1N1 and then died from it just a few days later, it was enough to scare me into rapid and determined action.

But even at the Joslin Clinic, I had to jump through a few hoops in order to be viewed as "eligible."

"No, I'm sorry. That vaccine is only for patients who are 24 weeks pregnant and up."

"Really?" I said, my hands against the counter. "I was told that being 14 weeks and also having type 1 diabetes made me a shoe-in for this vaccine. It's like my prize for being the in double risk pool. So there isn't one for me?"

She checked her chart again. "Type 1? 14 weeks? Okay, you can have a seat over there and we'll call you in for your injection in just a few minutes."

It felt so odd, fighting for something I wasn't even sure I wanted in the first place. But I kept thinking about the pregnant women I'd heard about on the news who had died from H1N1. And then I thought about all the public transit I'd taken in the last few weeks, and my upcoming travel plans for this week. Did I want to take the chance?

If it was just me, I may have. I may have waited or put off the shot or taken my chances. But I'm responsible for this baby. And when we heard the heartbeat, loud and strong, and saw him (or her) kicking around in there, I knew that I needed to do whatever it took to take the best care possible of my child.

So they shot me up with the H1N1 vaccine. Oddly enough, I felt grateful.

And that night, I promptly felt ill and slept for about 15 hours straight, waking only to test, snack, and drink water. I wasn't experiencing any full-fledged sickness, but the weather was above me enough that I hid out all weekend long, missing any Halloween festivities and instead camping out at home with hot tea, chicken soup, and Kleenex.

Today? Feeling much better and on my way to speak at a seminar in New Jersey. But I keep hearing about others who are seeking out the H1N1 and still haven't been able to gain access to a vaccination. What does it take to get protection when you need it? How are there H1N1 clinics in some states but not in others? Are you someone who is trying to get this vaccine but can't? Or are you avoiding this shot, and why?

I've already jumped, so my opinion is moot on this one. I'm pregnant, my doctors told me this was best, and I (for once) listened. But this issue is getting bigger and bigger, and with diabetes month just getting started here, I want to know how the diabetes community at large feels about this H1N1 vaccine.

NaBloPoMo: It All Starts with a Sausage.

Sun, 01 Nov 2009 20:05:37 -0500

It's November, which means that NaBloPoMo (National Blog Post Month) kicks off today. Also, NaNoWriMo (National Novel Writing Month). Not to mention ADM (American Diabetes Month). It's a whole month's worth of abbreviations being kicked around this November, so there's plenty to talk about and plenty of diabetes awareness to be raised.

But, of course, no NaBloPoMo is complete on my blog without Siah mucking it up.

Yes, that's my little piglet, sleeping contentedly amongst the clean laundry. Which needed to be thrown back in the wash, thanks to her shedding.

And it's on for another November of posting daily - I know plenty of other d-bloggers are taking on this challenge, too, so here's to the pack of us, raising our voices for diabetes awareness, one day at a time!

Looking Back: Reflections on Halloween

Sat, 31 Oct 2009 12:35:28 -0500

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??

BSparl.

Fri, 30 Oct 2009 16:49:45 -0500

Sorry for the late post, but we were meeting a friend today for lunch. A new friend. A little friend.

Internet, meet BSparl. We won't find out if it's a boy or a girl until late November, but BSparl is getting big and growing along at a healthy and safe pace.

More later, but now it's time to celebrate the Hallween weekend!!! See you on Monday!

Diabetes Can be a Five Letter Word.

Thu, 29 Oct 2009 11:30:32 -0500

... 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.

ePatient2009: Voice of the Patient.

Wed, 28 Oct 2009 11:16:03 -0500

"I'm Kerri Morrone Sparling and I'm not the voice of THE patient. I'm just the voice of A patient. And I'm sorry I have to present from behind the podium, but the tech guys couldn't link me up with a lav mic because of the other diabetes devices I'm wearing. Ran out of room."

And that is how I had to open my ePatient 2009 presentation, because if "awkward" isn't my middle name yet, I should update it.

I was asked to present at the ePatient conference in Philadelphia earlier this week, talking about the "voice of the patient." And honestly, I felt a little weird pretending to speak for all of us, so I had to make it clear that no one spoke for all of us. That's why we blog about our illnesses - we speak for ourselves.

Photo courtesy of the ePatient Connections Flickr stream

I told them about how diabetes has been a part of my life longer than just about anything else, with me at every school dance, every college class, as I walked down the aisle, and now, as I'm building Bsparl. (I'm sorry - I still get a kick out of saying "BSparl.") "Before I was an 'e-patient,' I was e-impatient. Where were the other people who were living with their diabetes? Was everyone just dying from it? I couldn't be the only diabetic out there who was alive ..."

We aren't alone with our diabetes, and I shared that fact with the group at ePatient 2009. When I started, there was just a small handful of diabetes blogs - could count us on one hand. But now? Hundreds of sites are dedicated to diabetes management and lifestyle, and we are SO not alone. The diabetes community is vibrant and engaged and wants to step outside of the literal computer box and even meet up in person.

(And I showed them proof, by way of some of the photos I've taken of "diabetes in the wild." See? We are real people!!)

"But while many of us have risen up to be considered 'patient opinion leaders,' we're not your target market, or your consumers. We are people, and it's important for companies to remember this. We're not out there blogging because someone told us to, or for financial gain. We don't blog because we HAVE to - we blog because it helps us heal. The emotional support gained from patient blogging and reading the blogs of patients is unparalleled."

I think they got it, guys. Or at least they seemed to. And I was so damn proud to be part of the community at that moment, because we do break the mold of "consumers." We're people living with, or caring for people living with, diabetes. And that gives us an unbreakable bond.

Diane Bayer, my co-presenter, followed me with a beautiful and heartfelt presentation about why she blogs. She started by talking about the diagnosis of her son's autism, and then told the story of her own recent diagnosis with MS. Her powerful words moved the crowd, and after she spoke, we took some questions from the audience.

One question that made me actually laugh was about the presence of pharma in social media. And since I'm a bit shorter-fused than normal lately (I'm blaming BSparl again on this one), that question just about put me over the edge.

"I'm a lifelong diabetic. Pharma's job is to keep me alive. I use their drugs and their devices to stay healthy. THAT is their priority. I don't care how many page views they have. If they want to have a Facebook page or something after they've accomplished that goal? Fine by me."

It's a strange dance, watching people who are living with different health conditions in the same room as marketing teams and pharma companies and people who might view us as "consumers." But at the end of the day, I'm idealistic enough to hope that we're coming together to find ways to improve health and wellness for us all. And if that's not their goal when they sign up for these things, I'm hoping it's at least on their list when they go to leave.

Voice of the Patient: ePatient 2009

View more presentations from Kerri Sparling.

(Don't roll your eyes. I'm pregnant, and I'm erring towards optimism as I prepare to bring a child into the world. I'll be back to my regularly scheduled cynicism next May. ;) )