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 (49) | 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 (44) | 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 (150) | 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 (23) | 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 (2) | 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 (14) | 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 (69) | 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 (29) | 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 (40) | 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 (54) | 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 (20) | 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 (35) | 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 (40) | 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 (30) | 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 seven books while working out.  You can't work out hard when your nose is buried in a book!"

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

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

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

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

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

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

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

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

"Nope."

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

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

"No problem.   Happy belated birthday!"

"Thanks!  Stay off the damn skylights."

Click.

Posted by Kerri Morrone Sparling at 09:02 AM | Permalink | Comments (10) | TrackBacks (0)

This summer, the Children With Diabetes "Friends For Life" conference is taking place in Orlando, FL in July.  Last year was my first time at the FFL event, and it was beyond inspiring.  Now there's a chance for people with diabetes to attend through the help of the Diabetes Scholars Foundation!

Here are the details: 

"The Diabetes Scholars Foundation will provide financial assistance for at least ten young adults (ages 18 to 24) to attend the 2009 Children with Diabetes Friends for Life Conference at Disney's Coronado Springs Resort from July 7-12, 2009 in Lake Buena Vista, Florida. The conference is a gathering of world-renowned clinicians, researchers, physicians, adults, children and families with diabetes. It offers many opportunities to learn the most current information in diabetes care."

If you are between the ages of 18 and 24 and you want to apply for this scholarship, download the application and go for it!  Entries must be postmarked by April 15th - so there's still time to apply! 

Friends for Life is an event that can change your life. I'm so excited to be attending again this July - hope to see you there!

Posted by Kerri Morrone Sparling at 09:54 PM | Permalink | Comments (6) | TrackBacks (0)

About two weeks ago, I had this little, nagging pain in my right wrist.  Not so much at the bendy part, but on the outside of it, right on the bone.  It was sore to the touch, aggravated by movement, and hurt when I woke up in the morning.  It seemed to get worse every day.

So, because I'm a very bright girl, I didn't do anything about it.  Instead, I went to the gym, continued to work feverishly in efforts to meet some writing deadlines, and even finished a scarf I was working on.  (Crochet.  Yes, I am a Grammie-in-Training, it seems.)

Thanks to all of this injury aggravation, I finally had to get myself to the doctor's office yesterday.  The phone call to the nurse/receptionist, as always, was awkward.

"Hi.  It's Kerri Sparling.  I think I have carpal tunnel or some nonsense."

The nurse laughed.

"Hi, Kerri.  Sure, can you come in this morning at 11:45?  So we can check out your nonsense?"

(They are so patient with me.)

"Thanks, see you at 11:45!"

When I arrived, my wrist was throbbing after a morning's worth of mouse-clicking and typing at work.   After being weighed (five pounds since the wedding - more on that later.) and having my blood pressure checked (120 over 72 - good to go), I waited for Dr. CT to visit me.

"Carpal tunnel?"  She said, walking into the room with a concerned look on her face.  "And hi, Kerri.  Carpal tunnel in diabetes is common, but let's make sure that's what you have going on."

"It hurts here," I said, pointing to the outer right hand side of my ... well, my right hand.  "And when I lift it in a pulling motion, it doesn't hurt.  But a pushing motion and a lifting motion kills."

She took my hand and pressed on the sides, asking me to flex the tendons.  "Here is the worst?"  

"Yes.  Yup, right there."  

"Well, the good news is that it isn't carpal tunnel.  It is tendinitis, though.  I'm sorry because I can tell this is making you very uncomfortable.  What I want to do is start you taking Advil three times a day, wearing a wrist brace while you sleep, and layng off the mouse as much as you can.  We need to let this rest so it can heal properly, okay?"

I'm like an addict.  My Internet-itchy fingers started to quiver.  

"Ah, staying off the mouse will be tough because I work all day on computers and I have a tendency to write a lot when I get home at night."   

She shot me a look.  

"Okay, okay, Dr. CT.  I will be mouse-free as often as possible."  Possibly a lie, but I'll try, anyway.

Tendinitis.   Another side dish that seems to come with diabetes.  Fantastico.  Anyone else have any experience with this one?  I'm looking for fast recovery and yet the ability to remain bloggy.

Edit:  Great idea from George and some folks on Twitter - might need to Bedazzle that shit! Now I just have to order one.  ;)

Posted by Kerri Morrone Sparling at 11:08 AM | Permalink | Comments (25) | TrackBacks (0)

A funny thing happened to me on the way to the Internet last week.  I wanted to record a vlog post on my lunch break, but my blood sugar took a bit of a dip. 

Moron that I am, I still recorded and talked my face off.  

The point I made at the end of the video is one that I've thought about a lot - diabetes is an invisible disease, especially for those of us who are younger.  Even though we are dealing with diabetes every day, it's not a disease that is visible to people on the outside.  There's a certain blessing to people not knowing we're "sick," but does it make it seem like we don't need our cure?

Oh hell yes we need our cure.

Posted by Kerri Morrone Sparling at 10:07 AM | Permalink | Comments (53) | TrackBacks (1)

Last night at the gym, I put my bag in the locker and took off my sweatshirt.  Wearing my black yoga pants, sports bra, and a tank top, I went into the bathroom section of the locker room to put my hair in a ponytail.

Two other women were at the sinks, chatting in Spanish and washing their hands.   They were standing to my left and as I raised my arm to put the elastic in my hair, I noticed that both women had stopped talking for a minute and were staring at my arm. Staring like I had moldy peach stuck to my arm, or maybe one of those bizarre happy spiders. 

Then I remembered that the Dexcom sensor is comfortably resting on the back of my left arm.  Facing them.  

I had a quick surge of "Grrrrr," as in "What are you staring at, woman?  Never seen a CGM sensor before?" ... then I had to check my attitude.  No, they probably haven't ever seen a continuous glucose monitoring sensor before.  Just because it's something I'm used to doesn't mean it's something they are used to.  After yesterday's post purge and your wonderful and inspiring comments, I felt ready to cast off some of this anger and try, instead, to help.

So I decided to smile instead.  

"I'm sorry, I don't mean to notice that you're staring."  Gestured to my arm.  "This thing - it's for my type 1 diabetes.  It's a glucose monitor."

"Oh my goodness, I did not mean to stare," said the woman in the green shirt.  "I was like, 'Is that an iPod thing or something?'  I have never seen that kind of thing before."

Her friend with the glasses leaned in.  "For diabetes?"

"Yeah.  I know it doesn't look completely natural, and I would stare, too, if it wasn't something I was used to." Glasses and Green Shirt smiled back.  "It's cool.  I just didn't want you wondering if I was some kind of cyborg or something."

Green Shirt laughed.  "Cyborg?  No, chica.  It's interesting looking.  I was waiting for, like, the music to come out of it or something.  But I didn't mean to stare.  Lo siento, my friend."

"Not a problem at all.  Have a good workout!"

I left the locker room and went to do my workout.  After I was done, I went back in to grab my sweatshirt and saw Glasses and Green Shirt getting their gear together.  Flashed them a quick smile.  Glasses smiled back.  Green Shirt tapped her left arm and gave me a knowing nod.

Some people can try to bring you down.  But others, even strangers, can raise you up.  

[Dexcom disclosure]

Posted by Kerri Morrone Sparling at 11:02 AM | Permalink | Comments (23) | TrackBacks (0)

This past Monday and Tuesday, another dLife coworker volunteered to be "diabetic for the day."  (We'll call him Johnny CoWorker for the purposes of this post.)  He wore an infusion set (sans needle), a "pump," and tested his blood sugar throughout the day.  But in addition to the physical hardware of diabetes, I spoke with Johnny CoWorker about the emotional aspects of diabetes, citing how vulnerable highs and lows can make us feel, what the feelings/food conundrum is like, and what it's like to manage a chronic condition not just for the day, but for a lifetime. 

He asked a lot of questions.  And he listened.  This is his feedback about his experience with diabetes for the day:

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

JC:  The pump was not an issue for me, it was slightly weird getting used to it and when I had to decide what to wear for work. Other than my kids asking me what the wire attached to me was, I didn’t notice it.

I got the hang of testing after a little bit, and was very interested in how working out or what I eat affected my numbers.  A couple of times I got a bleeder and it stung and then one time I had to prick my hand four times to get enough blood to get a reading (rookie!).  I felt in tune with my body and was intrigued to learn my numbers each time.

JC:  Luckily no, I exercised and ate well all day so my numbers where in a range of 83 – 121, which I was pleased with.
 
Kerri:  Do you feel as though you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?  

JC:  I think I do, but I don’t know that I can truly appreciate what it would be like for others unless “I had” to do all of this.  I would be interested in learning more about if I had a heavy carb meal (like my favorites – pasta or pizza) and what that might of done to my numbers.  I am grateful that I don’t have to know how food, exercise, or stress effects how I feel on a daily basis.
 
Kerri:  Did this experiment make you appreciate your health any more?  Less?

Continue reading "Diabetes For The Day: Round Four" »

Posted by Kerri Morrone Sparling at 10:03 AM | Permalink | Comments (14) | TrackBacks (0)

At the JDRF Walk in Connecticut this year, I met with a woman named Joan Benz.  She was tending a table of her homemade wares:  specialty pump pouches and concealment cases.  Joan is the founder of T&J Design.

Joan is the creator of a fantastic little product called "the leg cuff," and it's the Thigh Thing 2.0, as far as I'm concerned.  I absolutely cannot STAND when I'm wearing my pump on some kind of strap around my thigh and it starts to FAIL.  Nothing is more embarrassing than walking down the sidewalk towards my office and feeling that thigh strap start to slip, then slide down towards my knee, then tumble out from under my hemline - making me look like my undergarments are falling off me as I walk. 

The leg cuff is different because it's a thicker piece of fabric and there's a lining that adds some extra grip to the whole thing.  Because it is a wider structure, it isn't as apt to slide down while you walk.  And because Joan makes these herself, specific to your measurements, the fit is precise and snug. You can get the leg cuff in black or white, which makes it pretty darn versatile.  And you know what a fan I am of keeping the pump concealed and quasi-fashionable!

And while this whole leg cuff thing is a wicked cool product, there is something else that Joan makes that really tugged at my heartstrings.  Joan creates these pump concealment pieces, ranging from the leg cuff to a more standard "pump pack."  But she also makes pump packs that are doll-sized, helping a little kid with diabetes to feel more accepted and less alone with their disease.  Each pack comes with a little cardboard, doll-sized pump.  It's just about perfect.

I think having a "diabetic doll" is crucial to that acceptance stage, growing up with diabetes.  I remember I had a Cabbage Patch Kid with blond yarn hair that I named "Carolyn," and she was diabetic.  Just like me.  Carolyn had to test before she ate.  She took "injections," and she accompanied me to many pediatric endocrinologist appointments at Joslin.  Even now, years later, I remember how Carolyn the Cabbage Patch Kid made me feel  like I was normal.  Or at least a new kind of normal.  So, to me, Joan's idea is fantastic.

If you are looking for a good "thigh thing," check out T&J Design and tell Joan I said hello!

(Also, Joan was recently named the Outreach Coordinator for the Fairfield County JDRF Chapter - my local CT chapter - so hopefully she'll have a bigger outlet for her terrific product!  Congrats on your new position, Joan!)

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

What a freaking long week, with a doctor's appointment every day and way too much medical analysis.  This week is a very personal Friday Six, and here it is:

1.  On Monday, I had my A1C drawn.  I've been to this specific lab before, and the same woman has drawn my blood before, so I didn't have a lot of anticipatory nerves.  But when the lab technician said, "Okay, you have lost all of your color - put your head down, Mrs. Sparling," I knew I wasn't as badass as I wished to be.  (And I also winced when I pulled off the cotton ball she had taped to my inner arm ... I'm such a wuss.)  But thankfully, the results were a full point lower than my last A1c, leaving me with a 7.5% and a reachable goal of <7% for April. 

2.  And Tuesday, I had a dentist appointment.  Those of you who have been reading SUM for a few years know that I have an unholy fear of the dentist, but it is warranted.  My teeth are so sensitive and require barrels of novocain to make them numb, so fearing the wielder of pointy metal hooks in my mouth is a rational fear.  However, my new dentist is FANTASTIC and brings me no pain.  I had my teeth cleaned (first time in ... ages, unfortunately), no cavities, and I have already scheduled another cleaning for April.  I'm considering the dentist hurdle cleared for the time being.

3.  Wednesday has me sitting at the dermatologist's office to have a new freckle on my breast examined.  (Whoa, Kerri.  TMI?)  Yes, that is way too much information, but since when did I start censoring myself?  (Since ... today?  Maybe I should start.)  Always in a constant state of medical over analysis, I decided it was best to have it checked out.  So I spent Wednesday morning having a kind, eccentric, little bald doctor look at my breast with a magnifying glass.  Definitely a "first."  This little issue ended up being nothing to worry about, but now I can check "awkward sharing moment with the Internet" off my list for the week. 

4.  Thursday had me with dilated pupils at the retinologist's office.  Of all the appointments this week, this eye one was the least ... awesome.   

"Look up ... okay, now look a little to the left ... Kerri, up again ..."  Dr. Retina kept shining the light in my left eye and making a "hmmmm" sound under his breath.  My face was cupped by the eye examination machine.

"You can't fool me.  I know you found something.  Spit it out."  My eye doctor and I have a very good relationship, and we talk like we're about to go grab a beer together.

"Small little something.  Hemorrhages in there that I want to keep an eye on."

"Pun intended?"  Without moving my face from the chin rest, I reached over and grabbed a Kleenex because I immediately started to cry.  But I was oddly okay with the news.  Maybe I've already had that bubble busted.

"It's okay.  But with you and your husband talking about maybe getting pregnant in the coming year, I want to keep close tabs on your eyes.  You've had diabetes for what, a million years?"

"Twenty-two years."  I smiled.

"Twenty-two years.  And your eyes look beautiful - barely a problem at all.  But I want to keep them that way.  Let's schedule an appointment to do a fluorescein dye exam before you and Chris are pregnant, just so we know exactly what we're dealing with."

"What is that?"

"We'll inject a dye into your arm, then do a dilation on your eyes.  The dye lets me really see what's going on in there with complete precision.  And with you, I do not want to take any chances."

"Okay.  So do I need to worry about this?  I'm worried.   You know I worry."

"You worry?  You do?"  The gentle ribbing was okay with me.  Soothed my anxiety a bit.  "You do what you're doing.  Work to keep your blood sugars controlled.  And think about taking some time off from all that work you do.  Maybe take a vacation?"

Fine.  So now I need to schedule a vacation.  Doctor's orders, you see.  ;)

5.  Now that these appointments are all behind me, I'm moving forward towards the next steps.  I am doing the pre-pregnancy clinic at Joslin in March, and Chris and I are working to get everything in order so that we can make our family-starting decisions based on factors other than diabetes ones.  It's an exciting time, and one I've been looking forward to my whole life.

6.  And in my only news-related bit of the day, this weekend is the end of the MedGadget awards, and thanks to all of your help and support, SUM is in the lead for Best Patient Blog.  I would be honored to win this award on behalf of every last one of us, so please keep spreading the word and voting!  :)  Thanks for everything, and hopefully on Sunday I can report that WE DID IT! 

I'm planning to spend the weekend hanging with my girl friends (finally seeing the Batman after a long absence!) and doing some recreational writing.  I hope you guys have a great weekend, and stay WARM!!

Posted by Kerri Morrone Sparling at 11:32 AM | Permalink | Comments (16) | TrackBacks (0)

Today I have the infinite pleasure and honor of hosting a guest blog from my friend Fran Carpentier.  Diagnosed in 1969 with type 1 diabetes, Fran Carpentier is a devoted member of the Juvenile Diabetes Research Foundation, the Diabetes Research Institute Foundation, and the American Diabetes Association.  I met Fran at an advocacy event in NYC last October, and our friendship was instant. 

Fran has offered up her perspective on community, pregnancy, and her almost 40 years with diabetes here at SUM:

Every now and again, I use some version of it to poke fun at my diabetes.

Here’s what I might say, for example, when describing how to change my insulin pump: “It takes a village—and all the equipment in it.” Or how I complain about the American medical system: “It takes a village—and that’s just to fill out the insurance forms.” And when I’m frustrated by the difficulties of getting comprehensive, top-of-the-line diabetes care, I have been known to swipe, “It takes a village—more like a small town’s-worth—of endocrinologists, certified diabetes educators, nutritionists, ophthalmologists, internists, podiatrists, and exercise physiologists (or a helluva savvy trainer) to raise a child who has diabetes into a healthy, long-living adult with diabetes.”

After I make my point, I generally strike the term “village” and switch to “team.” Because what anyone with diabetes really needs is a team of experts who can follow his condition over the long haul, plus a support team of family and friends to boost the diabetic’s emotional well-being.

How I joined the team—or better yet, the “community.”

In August 2008, I began blogging in “Diabetes, Day-By-Day”, and that’s when I began to understand that the online “community” (in this case, the online diabetes community) is the new “team”—and a terrific team at that.

When I sit down to “belly-ache in my blog” (which is how I refer to the physical act of blogging), I’m as mindful of what I give to my readers as I am about what I get from the entire experience. All told, it’s a chance to vent, an opportunity to share news or a few shortcuts to better diabetes control, and the surest road I know to validation, which is the best reward of all, because with validation comes peace of mind.

That’s what I got when I read Kerri’s post on Monday morning — a strong dose of validation. Kerri’s coming clean about not always wearing her continuous glucose monitor on weekends validated how I felt about wanting a break from the annoying, intrusive alarms coming from my own CGM (even though I only started wearing it last week). And hearing Kerri ’fess up that over this past weekend she didn’t make the best choices in food and exercise defused the guilt I was feeling about the larger-than-usual boluses I took in order to eat extra bread…and cookies too — shhh! (Hey, Kerri! This is not a criticism! I made myself French toast for Sunday breakfast too! It was when I decided to eat half a loaf of raisin challah for dinner that things got hairy. But that’s another story.)

There is something uniquely powerful in hearing how someone else who is “walking your walk” is managing the journey. Frankly, I am just blown away by how many people are going through the same diabetes angst that I am at any one time and how much they are doing about it.

In one of my posts last Fall, I called blogging “the ultimate group therapy.” I don’t think I could ever describe it better.

The funny thing is that when Parade.com asked me to blog about diabetes, I thought to myself, “Why would anyone care about my diabetes?” But once I began to read what other diabetes bloggers had to say, I became hooked on the idea. There is some pretty powerful “medicine” going on online (in the figurative sense, of course), and it makes me realize that just as it can take a village to raise a child, it takes a cyberspace town hall to keep all of us informed, in touch, and full of hope and even pride.

I only wish that the diabetes online community and at least two handfuls of bloggers specializing in “diabetes and pregnancy” were around when I was expecting a baby. Looking back on those nine months September 1993 through May 1994, I’m amazed that the strict regimen of a type 1 pregnancy, which essentially translated into blood checks every two hours around the clock, every day for the entire pregnancy, coupled with the facts that I was 39 years old and already had had diabetes for 25 years at the time I conceived, plus the inescapable emotional pressure (“Would my diabetes harm my baby?”) wasn’t harder than it was.

The trick to getting through it, ladies? Stand guard over your blood sugar and just keep your eye on the prize. My “prize,” Benjamin Francis Salom, was born on May 24, 1994, at a robust 7 pounds, 2 ounces and received APGAR scores of 9 and 9. Excellent blood-sugar control makes good, healthy babies. Believe it!

Remember what I wrote earlier about “getting something” from the experience of blogging? Well, remembering what I went through to have Ben just gave me a new dose of determination to master my CGM. So now, I am going to phone my Medtronic Minimed trainer before she goes to sleep and hook myself up anew to that damned yet wonderful device that’s going to help me interpret trends in my blood sugar so that I can fine tune my control.

After I do that, I am going to log onto Juvenation.org, a type 1 diabetes community created by JDRF, and click on “Diabetes and Pregnancy,” and see if I can give some hope to the terrific women I know I’ll find there who are worried that they will never be able to have healthy babies. (Of course they will!)"

Thank you so much, Fran!  And for more from Fran, visit her diabetes blog, "Diabetes, Day-By-Day" at Parade.com!

Posted by Kerri Morrone Sparling at 09:32 AM | Permalink | Comments (1) | TrackBacks (0)

A little patient perspective goes an awfully long way.

And this time, the diabetes community is rallying to make a lot of patient perspective go as far as it can - straight to the Food and Drug Administration (FDA) to urge them towards creating a Diabetes Advisory Council.

Members of the diabetes community, myself included, are co-sponsoring a petition to achieve this advisory council goal.  Here is the core goal of the petition, as written on the website:

"Due to the very nature of the severity and prevalence of diabetes, the following leaders within the diabetes community, who have signed this petition, implore the FDA for the immediate creation of a Diabetes Advisory Council, whose goal would be to improve options for patients. This council would include practicing endocrinologists, diabetes educators and others communicating directly with patients. Our experience, focus, and keen awareness of the needs of the diabetes community would be an invaluable resource to the FDA as it faces the arduous process of evaluating new diabetes treatments.  Our aim is to improve options for patients.

We urge the new FDA leadership to recognize the urgent need for more safe and effective treatment options for diabetes and to reduce barriers to innovation. More treatment options will benefit patients. The disease is progressive. Delays in the availability of new treatments will only result in tremendous cost to public health and the economy.  Our recommendation can benefit patients without sacrificing their safety."

- Ask FDA to Better Serve Diabetes Patients

This petition isn't about passing unsafe drugs and paving the way for companies to market crappy products to our community.  It's not about turning a blind eye to drug-induced cardiovascular issues.  What this petition does is give people with diabetes, and the people who care for them, a clear voice in these government processes.  As the petition states, our "experience, focus, and keen awareness" of the needs of the diabetes community would be an invaluable resource to the FDA. 

We want safe and effective treatment options.  Diabetes is a disease that affects my life every single day, and I work hard to stay as healthy as possible.  I believe that the perspective of patients like us and those who love us can collectively raise our voices and bring newer, safer diabetes treatment options into our lives sooner rather than later.

I want a cure.

But for now, I'll settle for progress.

If you want to see a Diabetes Advisory Council created, sign the petition and pass it on.  And for more information on the programs the FDA already has in place for patient advocates, check out this link.  Help spread the word on how the diabetes community can make our collective voices heard.

Posted by Kerri Morrone Sparling at 09:25 AM | Permalink | Comments (0) | TrackBacks (0)

I use a Dexcom CGM.  (This isn't new news, but bear with me.)  During the course of the last year, the folks at Dexcom took notice of my bloggish ramblings.  And thanks to my honest feedback (yes, I told them that their device is the most comfortable for me, but the adhesive still needs work) and their support of the diabetes community, they've decided to sponsor me here at Six Until Me and provide my Dexcom products gratis.

I am very, very proud to be part of this agreement, and I'm also very grateful.  Even though my sensors are now covered by insurance, copays and deductibles are still what they are, and I'm thankful for any financial assistance that can come my way during these tough economic times.

However, I wanted to let you guys know what the deal is because I don't want there to be any questions about my relationship with different companies.  Disclosure is the responsibility of the blogger, and I wanted you guys to know about this agreement as soon as the proverbial ink was dry on the contract.  To be clear, yes, Dexcom is giving me my sensors for free.  They are now a sponsor of this blog.  They are going to be placing an ad here in the coming weeks, and you also may see me in their ad campaigns.  And I am using their product.

But it's important to note that my decision to use their product did not stem from a sponsorship agreement.  As I've written before, I tested the CGM models that were made available to me and made my decision to move forward with Dexcom based on my actual user experience, and prior to any agreements between myself and the company.  During the course of drafting this sponsorship agreement, I spoke at length with many of the folks at Dexcom and they're well aware that everything I write about Dexcom won't always be favorable (nothing is completely awesome - these technologies are still in development across the board), but what I say about their product will always be honest.  And unedited.  (And hopefully spelled correctly.) This is the disclaimer that has been provided by the Dexcom legal team and is now living in the disclosure section of my site:

"DexCom is a sponsor of www.sixuntilme.com and provides DexCom products to Kerri.  All content is that of the author and not reviewed or approved by DexCom."

So I'll continue to discuss the pros and cons of Dexcom'ing, with honest feedback about its accuracy, the BEEEEEEP!s, how it makes me feel emotionally, the flipping adhesive problems, and the moments when it bails me out of a potentially difficult diabetes situation.  The one things I'm now biased on are the financial implications of using a CGM.  I will not be paying for my sensors during the course of this sponsorship, so when a sensor comes loose after just a day or when the accuracy is spazzing out, I can't properly convey that feeling of "Arghhhh, frigging expensive sensor waste!"  But I do know what it's like to use this device and to fight for its coverage.  And I also know what managing diabetes has been like for the past 22 years, so I'm no stranger to the expense of this disease.

There's my moment of disclosure.  If you have any questions about this, or concerns about anything, please let me know.  I'm doing my best to give a true and honest perspective to you guys, and I want to make sure everyone knows where I stand here at SUM.  I work for dLife.  I'm sponsored by Dexcom.  And, if given the option, I would sell my soul to Nikon for making such a stellar camera.  But I want to be honest with you guys and I also wanted to share this exciting (at least to me) news, so now you know.  :)

Posted by Kerri Morrone Sparling at 09:02 AM | Permalink | Comments (40) | TrackBacks (0)

"Now I thought you couldn't eat that?  Or can you just dose for it and it's okay?"

She wasn't being the dreaded "diabetes police," but she was just asking a question.  Type 2 diabetes is a familiar disease for some of Chris's relatives, so I can understand his aunt's confusion about how my type 1 diabetes is handled.  Wasn't I supposed to just avoid sugar?

"I can eat this," I gestured to the slice of cheesecake on my plate, "So long as I check my blood sugar beforehand, take the appropriate amount of insulin from my insulin pump, and I avoid a high blood sugar spike afterwards."

"So you can eat anything you want with that insulin pump?"

And this is where I get a bit confused.  Being a type 1 diabetic since I was a kid, I've always taken insulin.  Always.  I don't know anything about type 2 oral medications and I have no concept of managing diabetes solely through diet and exercise.  It's either been multiple injections or the insulin pump. 

Insulin is cool stuff.  It keeps me steady and solid on days when I'm following "the rules," but for things like holidays (where there is a whole dessert table and all kinds of sugary treats), I do have the option to up the bolus ante.  But a cure?  Nope.  Using insulin requires a lot of work.

The thing is, I think that insulin makes it seem like I can eat anything I want.  While I indulged in that piece of cheesecake after Christmas dinner, it was a risk I took.  I took more insulin, and I've read all these obtuse reports about how taking more insulin is tougher on our bodies. (Is that true - does anyone have a study they can point us to that states how insulin ages us or something?  I'm so curious.)  I risked the immediate spike and the latent spike in my blood sugar after eating the cake.  I wanted to indulge and I weighed the risk of this indulgence.  It's a split-second decision that my brain is programmed to make by this point.  Diabetes is all about coloring in the lines, i.e. keeping blood sugars well-controlled to minimize the impact on my body.

But I wonder what people think sometimes when they watch me eat.  How does it look from their eyes?  They know I have diabetes, and from their less-familiar vantage point, they view it as "serious" because I take insulin.  I use Equal in my coffee and I never drink the eggnog or have regular soda.  I almost always avoid the mashed potatoes and sweet potato casserole, and at family gatherings, there is usually a "sugar-free" dessert.  They hear me talk about blood sugar control and they know I work in diabetes advocacy.  They understand as much as they can, not actually living with the disease themselves.

But what to they think when I reach for a piece of cheesecake?  Do they think I'm "off the wagon?"  Do they think I'm being irresponsible because I'm eating a sweet?  Responsible because I'm testing and shooting accordingly?  Does it confuse them to see me clamor for a glass of grape juice when my blood sugar is low?  Do they wonder why every time they see me, there appear to be new "rules" for managing my type 1 diabetes? 

Diabetes is a constantly shifting platform that we're trying to balance on.  Every day is different, every diabetic is different, and the rules do seem to change every day.  On Christmas, I ate cheesecake and never sported a spike.  Last night, a cup of tea tossed me towards 200 mg/dl.   

"A pump isn't a cure, though, right?  I mean, you still have to prick your finger and tell the pump what to do, don't you?"

She's learning, petal by petal.  And despite all these years, so am I.   

Posted by Kerri Morrone Sparling at 10:15 AM | Permalink | Comments (21) | TrackBacks (0)

As with everything diabetes-related (or maybe just life-related), there are pros and cons to this whole continuous glucose monitoring thing.  For those of you who are still thinking about whether you want to make this CGM leap, here are my pros and cons of CGMing to shed some light on the subject.

CGM CONS:

The sensor is bulky.  The sensor isn't tiny (about the size of an iPod shuffle), but it's held securely down by the adhesive gauze, so once it's in place, I can't feel it.  This is a big deal for me, since the Minimed CGM was painful for me.  However, it's visible underneath the sleeve of my shirts when I wear it on my arm and it's slightly uncomfortable to sleep on when it's on my back.

Can be "too much information."  Having blood sugar updates every five minutes is awesome, until you find yourself checking it every five minutes and obsessing over each result.  I needed to be psychologically ready for a CGM, and I need to be able to keep it from ruling my life. 

Receiver is enormous.  The Dexcom receiver is pretty big - bigger than my Blackberry - and it's cumbersome to wear.  I usually keep it on my desk, in my purse, or in my coat pocket when I'm out.  At night, I strap it to the headboard of the bed using a headband.  Not a big deal, but it's hard to miss.  Especially when it ...

Beeeeeeeeeeeps! The beeps are LOUD.  Mega loud.  Loud enough to wake me up during the night if I'm low (thankfully), but during the quieter parts of the workday, it's loud enough to distract my coworkers.  I recognize that the beeping is important, but it's not always convenient.

Adhesive sort of sucks.   This is my biggest compliant about Dexcom sensors.  The things do NOT want to stay stuck for more than five or six days.  I shower twice a day (before work and after the gym) and I wear clothes that rub up against the sensor, no matter where I place it.  Even with SkinTac, the edges of the sensor start to peel up at about the five day mark, and it's loose and ready to fall at the 7 - 8 day mark.  (And sometimes, the SkinTac and the Dexcom adhesive and a not-so-helpful bandaid create a huge and ugly problem:  frigging ouch.  See the photo on Flickr for a full rundown.) 

I do not like when a $60 sensor starts to peel away.  This is highly annoying.

Insurance coverage battles. While others have had their requests approved without batting much of an eye, my insurance coverage for the CGM had to be fought for.  I battled my insurance company for over eight months before receiving my approval letter.  The insurance hurdles are a definite con, and might make some people reluctant to fight for their right for a CGM.  (Cheerleader note:  But don't let it stop you!  Go for it!)

Doesn't feel "sexy."  (Yes, I know this "shouldn't matter," but these are my personal pros and cons, so roll with me, okay?)  With the pump infusion set stuck into one part of me and the CGM sensor in another, wearing two devices doesn't exactly feel like I'm ready to model for Victoria's Secret.  There have been plenty of times when a moment has been interrupted by the CGM beeping or the sensor getting stuck on my clothes and whatnot. 

CGM PROS:

Low blood sugar safety net.  This was a huge part of why I wanted to use a CGM in the first place:  hypoglycemia unawareness.  I was exhausted and frightened of the lows at 3 am, so having the added safety net of the CGM has been a huge improvement.  The CGM does its job and protects me from plummeting blood sugars.  When Chris is away on business, he prefers that I wear the CGM to keep an eye on those lows.  It makes me feel safe, and I value that "pro" above all others.

Helps me avoid staying high.  My body reacts to blood sugars that are over 260 mg/dl or so, but those 160's and 180's often go unnoticed.  The Dexcom helps me wrangle in these "minor" highs and tighten up my blood sugar standard deviation overall.  Staving off both the lows and the highs will be particularly helpful during my future pregnancy.

Excellent for exercise.  I go to the gym at least five days a week, and my workouts range from walking/jogging on the treadmill to cardio circuit training.  The CGM has been AWESOME at detecting fluctuations in my numbers while I work out, helping me avoid those crash-and-burn lows at the gym and also the highs that sometimes crop up after a hard workout.  (And it was great on our hikes when we went to Acadia - excellent tool!)

Driving safety.  I spend a lot of time in the car driving back and forth to RI, and the drive time is anywhere from 2 1/2 hours to 4 hours (depending on traffic - I hate CT highways).  Having the Dexcom in the center console next to me while I travel is another big bonus.  With hypoglycemia unawareness and blood sugars that seem to be affected as much by my moods as by what I'm eating, having an extra eye on those numbers is crucial to keep be safe behind the wheel.

Integration-free works for me.  I trialed both the Minimed CGM and the Dexcom and for me, the Dexcom being a seperate device worked best for me.  With the Minimed CGM, I couldn't hear the pump alarming in the night because it was buried underneath the blankets.  Having the Dex receiver separate from the pump is convenient for the nighttime alarms and also if I want to avoid having to deal with the CGM for a little bit.  I can shove it into my purse, bury it in a desk drawer, or even walk away from it for a little while if I want.  I like the freedom from being beeped at sometimes.  It sounds counterproductive, but in the longrun, this is a bonus for me.

Trending and tracking.  Here's the point of CGMs - to track the trends of my blood sugars.  The Dex doesn't replace my meter, but instead works with it.  I test on my meter and see a result of 100 mg/dl, but with the Dex, I know I'm "100 going down," "100 going up," or "100 holding steady."  This makes it easy to go into long meetings at work without fearing a crash, and also lets me go to bed at a blood sugar of 90 mg/dl with confidence.

Pretty darn accurate.  I don't expect this thing to be right all the time.  I already have my head programmed to accept that a CGM doesn't replace finger sticks, so when things don't match up all nice-nice, I don't flip out.  Overall, though, I've found that the CGM rides pretty close to my meter.  Dex works better when I'm running a bit steadier, so it's actually a weird sort of incentive to maintain better control to retain the integrity of the sensor.  Don't ask me to mentally make sense of that - I need to take whatever motivation I can and run with it.  ;)

But it does feel sexy.  And this is the flip side to that "con" coin.  The Dexcom is sexy.  It's stuck to me to gain better control of my diabetes.  Good control helps everything from my weight to my hair to my internal organs to my smile.  Being healthy is sexy as hell.  And being confident enough to wear this machine, despite its cons and because of its pros, makes me feel stronger all the way around.  For me, after weighing all these pros and cons, the CGM is definitely worth it.

Readers Beware!!:  These are MY pros and cons.  I chronicle my personal experiences with diabetes here on SUM and I'm not a doctor or a CDE or a medical professional of any kind.  I have decided to use the Dexcom CGM after trialing both the Minimed and the Dexcom, but I know plenty of people who are using the Minimed CGM without issue.  For me, the Dexcom was a more comfortable fit into my life, literally and figuratively.  It's all about personal preferences, and these are mine. 

If you're thinking about trying out a CGM, I recommend trialing as many kinds as you can before making an informed decision.  Your mileage on these devices will vary, so it's important to find out what works best for YOU.  Contact your CDE and see if you can schedule a week trial session with different devices. 

If you want to share your perspectives, feel free!  I love that the online diabetes community has become a real source of information for diabetics everywhere who are looking for real information - we are the true mavens of patient experience!

Posted by Kerri Morrone Sparling at 11:07 AM | Permalink | Comments (20) | TrackBacks (0)

Today's post is brought to you by the letters "T," "M," and "I."  And also "Y," for "why the heck am I telling you this?"

Because it may not be just me.  So I'm inclined to both share and draw on the genius of the blogosphere.

My period came when I was 13 years old - textbook "time to become a woman" sort of thing.  And it came for the first time at church.  During Sunday school.  Fantastic.  I knew what was going on (health class + MomTalks = educated Kerri), but the timing was a bit entertaining.

For the first few years, my cycle was more seasonal than monthly.  I only had my period once a season, skipping months at a time, but because I wasn't sexually active, it didn't raise any concerns.  My doctors and my parents decided I was going to take a few years to acclimate to a monthly cycle, and since I was only 16 at the time, it wasn't a raised concern.  I was under the medical microscope at that time anyway, being in my teens, having trouble controlling my blood sugars and/or hormones, and enjoying yeast infections, urinary tract infections, and other high blood sugar added bonuses. 

Once I became sexually active at the age of [hey look, something shiny!], I talked with my doctor about starting on a birth control pill.  Being the paranoid peanut that I am, I talked extensively with my endocrinologist and my gynecologist before deciding on a pill, and kept in close contact when them for the next few years.

But then there were some hiccups in the system that made me rethink the regular pill regimen.  First, I entered my late twenties and realized I had been on hormones for over ten years.  Second, I got engaged, which made me think BABIES and made me want to confirm that my reproductive system was in fine working order.  And thirdly, there was the diagnosis of the Factor V gene, which made regular birth control pills a risky choice and forcing me to try the minipill.

So, with all of these factors (literally and figuratively) in play, I've decided to come off the pill.  Effective last night. 

I've come off the pill once before, in college.  At that time, I was between serious boyfriends and wasn't sexually active.  So, under the advice of my doctor, I stopped taking the pill for eight months.  And during the course of those eight months, I did not get my period even once.  I decided to go back on the pill to re-regulate my cycle and it was only after taking a medication to induce my period did I get one.  Once I was back on the pill, my cycle came predictably and without issue.  But this "gap" concerned me, and I want to make sure I'm okay.

With my marriage behind me, my thirtieth birthday ahead of me, and my desire to start a family becoming more of a "now" than a "later," it's time to make sure my body is ready.  And not just from a diabetes perspective.  From all perspectives.

But - FOR THE RECORD - I am not pregnant.  I am not trying to get pregnant.  And I'm not ready to get pregnant.  When I'm there, I'll definitely share that news proudly!  But for now, I'm going to enjoy being a newlywed for a bit longer.  :)

So ... who out there was on the pill for years and came off it?  I am not sure what to physically expect (Will I cycle right away?  Will my body become sore or more sensitive?  Will I be an emotional wreck?  Will my face fall off?) and I could use some guidance.  Or advice.  Or maybe some coffee would suffice. 

Posted by Kerri Morrone Sparling at 10:46 AM | Permalink | Comments (23) | TrackBacks (0)

I love a good bargain.  So when I saw the BCBG Max Azria gray sweater dress on the rack at Marshall's for $30, I had to grab it.  (Consider it my economic stimulation effort.)  The dress is a soft gray with a flattering A line cut and a nice V neck.  Clingy fabric.  Fun.

But.

This dress doesn't hide much.  And it definitely didn't hide anything diabetes-related.

Normally, I'm able to hide my diabetes hardware to the point where I feel comfortable - the sock trick lets me wear the pants I like and not have to worry about pockets, the bra trick works with most dresses, and when it's a big event, pockets can be created. 

But this gray dress wasn't having it.  The pump set on my outer thigh stuck out.  The tubing snaking up the side of my body and into my bra (where the pump was clipped) was completely obvious.  And the pump itself looked like a cell phone shoved in my shirt.  Not okay.  Nevermind the Dexcom sensor on my right arm that the clingy dress fabric was gathering around. 

"For crying.  Out.  Loud."  I shifted things around to see if I could get the dress to settle smoothly, but every piece of diabetes hardware was on display.  

I don't care if anyone knows I have diabetes.  I don't care at all because it's not this big deal that I want to hide from people.  I am very open about diabetes and I don't mind explaining things to strangers and friends alike.  This is evidenced by my blog, my job, my decision to network with others like me.

What bothers me is when I want to look "normal."  I want to put on a dress and not grapple with wires.  I want to grab a small clutch purse that doesn't howl with a "BEEEEEEEEEP!" when my blood sugar drops or rises.  I want to be able to have a beer at the bar without fumbling to bolus.  I felt frustrated and furious and like a diabetes robot warrior.

"But isn't the pump best for you?  And the CGM?  Isn't that best?"

I know what's best for me.  I completely understand that using a pump with the help of a CGM and all the other technology I have access to is best for me, but in that moment, I wanted it to all be invisible.  I wanted to be living with that version of diabetes that everyone on the outside thinks is so manageable.  "Oh,  you do so well with it!  You seem so well-adjusted!"  But inside I'm screaming. 

Frustration got the better of me and I replaced the pretty dress with jeans and a black shirt.  (This is the abridged version - the full version included me creating some unique curse word combinations and throwing the dress into my bag in a satisfying tangle.)  Shoved the pump into my sock and hide the CGM receiver in my purse.  Tried to forget that the pump on my thigh and on my arm wasn't natural.  Tried to remind myself that this is part of diabetes and part of trying and part of my life.  Tried to remind myself that tomorrow is another day, and it will be another day with diabetes, so rebelling against it won't do me any good.  Acknowledge, accept, and move on.

The dress is balled up in my weekend travel bag, and I think I'll leave it there for a few weeks.  Maybe I'll make another attempt.  It could look different on a different day.  I could feel differently about it.  The emotional ebb and flow of chronic disease management is ongoing.

Some days, diabetes is a better fit than on other days. 

Posted by Kerri Morrone Sparling at 10:34 AM | Permalink | Comments (13) | TrackBacks (0)

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

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

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

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

In 1999, Lee was diagnosed with type 1 diabetes.     

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

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

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

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

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

Posted by Kerri Morrone Sparling at 10:20 AM | Permalink | Comments (10) | TrackBacks (0)

Wake up with a start as the alarm begins to blare,
Groggily come to and push aside my mussed-up hair.
Reach out to the nightstand and retrieve the zipper case,
Fumble with a strip and finally get the thing in place.
Lance my finger, squeeze a bit, and for five seconds wait,
Hear the beep, watch the screen, and see the "108."

Disconnect the pump with a quick and easy snap,
Grab that little plastic thing that I call a "pump cap."
Bring the Dexcom with me and connect it to the door
So I can shower, get all clean, and data will still store.

Towel dry - so careful, watching for the set and sensor,
Grab my robe and reconnect to the insulin dispenser.
Blow dry hair, drag a comb, and make attempts to dress,
Aim for outfits that conceal my pump with learned finesse.

Make my lunch and grab some snacks, minding carb-y grams -
Greek yogurt, green beans, protein bars - my morning snack grand slam.
Throw it all into my bag - I just have one more thing to add!
Toss in a tube of glucose tabs for all the lows this week I've had.

Snake the pump tube down my leg, tuck the pump inside
The trouser socks I love to wear - perfect for pump to hide.
Check the Dexcom to see for sure that I'm okay to drive,
Pet the cats, throw on my coat, and I'm out the door in five.

So much is diabetes, but it isn't my whole life.
I'm a daughter with type 1; I'm a diabetic wife.
It's in the fabric of my day, in the subconcious of my mind.
It explains so much of what I do, but I am not defined.

Posted by Kerri Morrone Sparling at 03:00 PM | Permalink | Comments (3) | TrackBacks (0)

They left me alone for several months, but now the lows have returned, and they brought friends. Last night, before we left the house to go to the gym, I tested at 137 mg/dl. Knowing I'd be doing at least 30 minutes of cardio and some weights, I figured I should eat something. Grabbed a bar from the cupboard and chomped on it.

"Will that do it?"  Chris asked as he mixed up his protein shake.

"Yeah.  It has like 18 grams of carbs.  If I disconnect and eat this, I should be good."

Munch, munch.  Feeling good.  We drive off to the gym and go our separate ways - Chris to the weight room downstairs and me to the women's cardio section.  I hit the treadmill and dial up a 30 minute workout.

Music is loud - a little Muse.  My legs feel strong and my sneakers pound against the treadmill.  Strong, healthy, strong, healthy ... the words jostle around in my brain with each step.

But I start feeling a little funny at the 20 minute mark.  The music is too loud.  My headphones feel tight against my ears and my hands are numb at the very edges.  I scan the far wall of the room and the walls look a little wobbly.  My legs are a little wobbly. 

With the treadmill still running, I jump off quickly to the side and grab my meter from my gym bag.  Jump back on to the treadmill with the meter in hand, slowing down the pace so I can unzip the bag and lance my finger.

33 mg/dl.

"That sucks."  I press "Stop" on the treadmill interface and open my bottle of juice, taking eight long slugs from the plastic bottle.   My legs, which just a few minutes ago were holding me up just fine, feel like they're made of yarn.  Leaning against the railing of the treadmill, I finish the bottle.

This low feels particularly rotten.  Waves of nausea and a feeling of extreme light-headedness are coming up from my knees and cresting over my eyes.  I know I need to get downstairs and find Chris, just in case.  My legs work on autopilot, bringing me downstairs and into the weight room, where Chris is working out.

One look is all he needs.

"How low?"

"Thirty-three."

"Hmm.  Larry Bird."   He guides me by the elbow over to where I can sit down.  "Did you drink juice?"

"Yeah. I'm frustrated.  I only got 20 minutes into my workout.  And I feel like I'm all ..." Words aren't processing properly in my head.  "Mushy.  I feel mushy."

"You just need a few minutes.  You'll be okay.  Right?"

"Right."  The affirmation makes sense.  "Baby, I'm sort of tired of Larry Bird."

He smiled and we waited for the numbers to climb.

I don't know where these lows are coming from, but they are sneaky, intense little suckers that buckle me at the knees and steal the words from my mouth.  I'm waiting on my next order of Dexcom sensors to be shipped, but last night was one of those moments where I missed the Dex.  I would have at least seen the low creeping up on me a little bit.

But the wildest part is how strong I feel when I'm in that range, that 90 mg/dl range.  It's my magic number.  I feel strong, capable, almost borderline athletic.  (For those of you who know me in real life, you know how remarkable that statement really is!)  It's crazy how much just a little fluctuation in these numbers can really change how our bodies respond. 

Dex, I need you back, buddy. 

Posted by Kerri Morrone Sparling at 01:38 PM | Permalink | Comments (14) | TrackBacks (0)

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

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

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

Fran, me, and Kalilah Harris

Charlie Kimball and me.  :) 

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

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

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

(And, for the record, I wore a bright blue scarf on Friday to show my support.  But it was muggy as hell in the cit