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

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

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

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

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

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

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

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

I've been slogging through some diabetes burnout over the last few months, but I'm starting to feel much better.  Things aren't perfect (Are they ever? Answer: Nope), but I've finally reached that point where I'm completely tuned in, rejecting guilt, and feeling like I'm on my way back to better diabetes control.  It's as much an emotional thing as it is a physiological one, and this video is about crawling out of the (primordial, most likely caramel-flavored) diabetes burnout sludge. 

Small steps are what move me forward best.  What helps you start stepping out of diabetes burnout moments?

Posted by Kerri Sparling at 09:20 AM | Permalink | Comments (33)

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

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

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

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

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

The "tour book," which served kind of as a yearbook for Simon's trip to NYC


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


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

"Simon says ... be happy!"

Actually, it makes perfect sense.

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

(More photos on Flickr here.)

Posted by Kerri Sparling at 09:44 AM | Permalink | Comments (13)

Posted by Kerri Sparling at 08:40 AM | Permalink | Comments (18)

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

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

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

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

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

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

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

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

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

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

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

Most of the Rhode Island schools are back in session today (a few days later than usual, thanks to the power of Ms. Irene), and I'm missing that "back to school" feeling.  School shopping with my mother, back when i was in grade school, was awesome because I'd always get notebooks, pens, and a new Trapper Keeper.  I loved the way the new notebooks smelled, and how a new pen would write, and damn if that Trapper Keeper Velcro wasn't the best in that first week of school.

New school supplies made me feel organized.  I liked that "clean slate" feeling, like I was given the right to let go of the past and start fresh.

I kind of need that again.

I'm not in a patch of diabetes burnout, so much as I'm in a patch of Mega Rut.  In this Mega Rut, I have picked up some very bad habits and they are proving to be difficult to shake.  Like ...

Not sleeping.  I love to sleep.  I love that feeling of laying down at night and tucking myself in underneath the down comforter.  I love a cold room, a cold pillow, and a warm husband.  I love not looking like I was dragged through town by a pony.  So why am I not sleeping?  Could it be the early mornings with the Bird, then the lack of work done throughout the day due to Bird-Watching, and then the late nights where I try to catch up on work?  The baggage under my eyes would cost me a lot if I had to check it for travel.

Not eating.  This sounds like a good weight loss method, in theory, but in practice, it's doing nothing but slowing my metabolism down.  On the average morning, it's almost noon before I've eaten something, despite having woken up with the baby around 7 am.  This makes me hungry, sluggish, and grumpy way too regularly (but it has proven to me that my morning basals are finally accurate and I can roll around with an in-range, flatlined CGM for several hours).  It also makes my morning pot cup of coffee send me to CrazyTown, where I'm so drunk on coffee that the laundry folds itself when I stare at it hard enough.

Being unorganized.  I seriously need that Trapper Keeper, because my to do list is long, scattered, and very hard to keep track of.  If it weren't for my desk calendar, reminder alarms set on my cell phone, and Abby, my mind would be a flooded.  As it stands now, my mind is hovering around the "class 2 rapids" status, but this fall is proving to be a very busy one, so I need to get my post-its in order.

Having a love/hate relationship with my inbox.  I love email.  I read every single one, and in my mind, I write these long, detailed responses with photos attached and iTunes recommendations.  Instead, I read the email and then draft up the response in my head while I take a conference call or empty the dishwasher.  And then I never send that lovely response, instead opting for one that's a few sentences and usually starts and ends with "I'm sorry I'm so late in responding!" 

Paying attention to Dex.  I am wearing the Dexcom 24/7 (and have been for over two years now), but I've been a little lazy with it, of late.  In the last two weeks, I've left the house twice without the receiver, and I didn't notice for another hour after I returned home.  (That means I wasn't checking it, which isn't a good trend for me.  The closer I keep tabs on that Dex graph, the better my blood sugars run.)  What's the point of wearing the sensor if I don't make use of the data?

So there are my current bad habits, but now what?  I need a bad habit bootcamp.  Or that there Trapper Keeper.  Either way, recognizing these issues is the first step.  Now that they're sitting here, in a list in front of my face, I need to do something about them.

School starts today for most of the state, and I'm taking a cue from their clean-slatedness.  Starting over is easy when you leave the baggage behind (or at least the baggage that's not residing under my eyes).  These are changes that need to be made and can be made easily, if I put my scattered mind to it.  ;)

Posted by Kerri Sparling at 09:25 AM | Permalink | Comments (13)

"Mom, that lady has special powers and is an alien.  I know because I saw her alien transmitter in her pocket and it has wires and it talks directly to her body using that tube.  I saw it.  She can't hide from me because I saw it and it looked that's how she communicates with the mothership but she's safe and she didn't seem scared, right?"

It's at that point that I felt the need to explain to the eight year old boy's mother that it was an insulin pump.

Posted by Kerri Sparling at 09:10 AM | Permalink | Comments (27)

"So thanks for coming, you guys.  We're here to talk about parenting with type 1 diabetes," said Korey.

At this point, people started doing introductions.  "Hi, I'm So-and-So and I was diagnosed with diabetes in 1998."  or "I've been diabetic for 16 years and I have three children."  Only introductions.  That's it. 

So why was I already crying?

I didn't expect to feel the way I did during this session.  Instantly, I was completely overcome with emotion.  And not in a quiet, just-a-few-tears-escaping sort of way.  Instead, I was a blubbering mess, sniffling and snarfing and wiping my nose on my sleeve.  It was this intense rush of emotions that I didn't even know I had ever thought about, never mind felt overcome by.  

The group talked about their diagnosis, and their decision to have children.  They talked about what it's like to have a low blood sugar affect plans to go camping.  They talked about how their children react to diabetes, and what inspires them to keep plugging ahead on their daily management.

One woman caused me to have to leave my seat and grab a box of tissue to keep for my very own from the back of the room.  "I was the only person with type 1 diabetes that I knew ... until my son was diagnosed."

I couldn't contribute.  I could barely catch my breath.  And it was embarrassing.  My daughter is only 15 months old.  She doesn't know much about my diabetes, save for the fact that I have my own personal remote controls that she wants to press all the buttons on.  She doesn't understand why I sometimes don't share my snacks.  Or why I can't pick her up every time she wants me to.  She doesn't understand now, but eventually she will.

And I think that's what grabbed me and held me.  Before BSparl was born, I planned for her.  I planned and worked to become the healthiest I could be, and I loved her long before I carried her inside of me.  And then she was born, and the focus became adjusting to life as her mommy and as part of a family of three instead of two.  It wasn't until recently that I felt comfortable as a mom - used to it - and my heart finally allowed me to feel something other than the newness of motherhood.

I wanted to introduce myself to the group.  I wanted to tell them that I, too, was a veteran of type 1 but not so much of an experienced mom.  I wanted to ask them how they made sure their kids weren't overwhelmed by their diabetes.  And the question I wanted answered more than anything kept catching in my throat:  How do I explain this to my daughter?  But I couldn't ask.  I just sat there and listened.  And cried like a baby.  And thought about the fat little Birdy who was waiting for me at home in Rhode Island, flapping her little wings and getting ready to fly.

After the session was over, we spilled out into the hallway.  George caught me up in a hug and I just let let it all go.  The fear and that heavy feeling of "forever," coupled with a love for my daughter that I didn't truly understand until I thought about diabetes taking me from her.  I knew he understood.  I knew that Scott understood, too.  And so did everyone else who has raised a family while taking care of their own diabetes.  These friends of mine were parents with type 1, with children who were much more grown up than my little bird.  I knew that if they could do this, I could, too.  And having met both George's and Scott's beautiful and loving families, it gave me hope that my own little girl would grow up to love me just as much as I love her.

This session was the most emotional I have ever been in public, but it felt okay.  Safe.  The only casualty was George's shirt, which ended up with a smudge of mascara.  And perhaps some tears.  Or snot.  (Sorry, G.)

I saw Korey in the hotel later on, and apologized to him for being an emotional wreck in his session.  

"It's okay.  I totally understand."  But as soon as he started to talk, I started crying again.

"I'm sorry, Korey!  I think you're like a trigger for me.  I'll just email you."

This session was intimate.  And it hit a nerve on me that I didn't even know was there.  But I felt better afterwards, like I had experienced a therapeutic breakthrough, somehow bringing me even closer to both my family by blood and my family by blood sugar.

Thank you, George and Scott, for being the kinds of parents I hope to become.

Posted by Kerri Sparling at 10:03 AM | Permalink | Comments (37)

In the spirit of St. Patrick's Day - which is somehow all about drinking and has very little to do with the fine Irish heritage of people with wonderful accents and a delicious cereal -  I'm revisiting a post about diabetes and alcohol, while I work on a recap of JDRF's Government Day activities.  And also, a little Mills Lane goes a long way.  Also, also, I finally figured out how to make the font green.  That was about six years in the making.

The microphone drops down and Mills Lane plucks it out of the sky.

“In this corner, bringing a bevy of boluses and carbonated carbohydrate content, wearing Gold Shorts and a lime wedge, weighing in at about 12 oz is the mysterious new challenger, La Corona!” 

“And in this corner, The Titan of Tight Control, the A1c Ally, weighing in at about 9 oz and made up of cheap vodka, cranberry juice, and a splash of Tropicana orange juice – the reigning champion, The Mighty Madras!”

“Gentlemen, this is the title match.  Nothing below 50 mg/dl and nothing, nothing above 250 mg/dl – do you hear me?  I want a good, clean fight.  Now let’s get it on!”

Bell rings.

“And the Corona lurches forward right away, fists flailing! Look at those carbs, folks!  The Mighty Madras is backing off a bit – I can hear those ice cubes clanking against the side of him!  Corona reels back, swings out and oooooh! A solid hit to the jaw of the Madras!  He’s falling back!  He’s staggering!  Could he be out already?  Is this newcomer going to knock the ol’ Tried and True out of the ring? 

The Madras is leaning against the ropes … he looks exhausted!  Only a few minutes into this fight and the Cold Corona definitely has the upper hand!  This could be it!  …

… But wait, what’s this I see?  Yes, the Mighty Madras is on his feet!  He’s taken out a blood glucose meter from his pocket.  He’s looking to test Kerri – judges?  Are we allowing this?  Yes, the judges are allowing a blood test.  And Kerri, after having two of the icy cold Coronas, is up to 253 md/gl!  Her bolus was grossly under estimated!  They’re flashing the results across the marquee – indeed, Kerri is high and the Corona can’t stop staring at the number! 

And – ooooh! – the Mighty Madras has snuck in a jab while the Corona isn’t paying attention!  He’s now pummeling the Corona!  There’s lime juice everywhere, my friends … this is truly a gruesome beating!”

“And the Madras has brought out a bottle of insulin!!  And OH MY GOD he’s cracked it over the Corona’s head!  Corona is out!  It’s a knock-out, dear viewers!  This fight is over!  Over!”

Corona falls flat against the mat, out cold.  The ring smells of sweat and insulin.  Mills Lane grabs the championship belt and thrusts it into Madras’s hand, declaring him “Winnah!”  Madras, bleeding profusely from the eye and crying, raises the belt to the air and yells, “Kerri!  Kerri!”  Kerri comes running from the stands, meter in hand, and stands in front of him as she tests.  “153 mg/dl.  I’m coming down.  I’ll be more careful next time I drink high-carb beers, O Mighty Madras.  I promise!”

They embrace.  The “Rocky” theme swells in the background.  Kerri decides that the next time she wants to have a beer, she needs to measure more carefully and bolus with more precision.  She also discovers that she has run this storyline into the ground.

Mills Lane wipes the tears from his eyes.  “I love a good fight.”

Happy St. Patty's Day, all!  Be safe, regardless of what you're up to today.

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

I received the reminder call.  I discussed my schedule that week with my husband and didn't bring it up.  And the letter from their office still remains stuck to the calendar page.  (Not to mention, the missed appointment cost me $25, to boot.)  But I never made it to Joslin to have my eyes checked again.

And I don't want to go.

If it seems like I've had an eye dilation like every three months, it's because I have.  My eyes were dilated several times during my pregnancy to track the progression of my then-mild and now-moderate non-proliferative retinopathy, and this eyeball issue was the main reason I ended up delivering my bird via c-section.  (The pre-eclampsia didn't help matters much, either.  Yay for ... stuff?)  

I fully realize that what I need to do is pick up the phone, call the eye clinic, and make an appointment for a dilated eye exam.  I know this.  And later this afternoon, I will make that phone call. 

It's just sometimes I find all this crap really tedious.  Not so much the little things, like testing my blood sugar throughout the day, changing out the insulin pump ever few days, and popping that blood pressure pill every night before bed.  That stuff doesn't make me bonkers. 

It's more the Big Stuff.  The eye exams.  The endocrinologist appointments.  The hours spend combing through insurance EOBs and spending even more time discussing this paperwork and battling with insurance claim specialists who think 10 test strips a day is "excessive."  It's making log books and calling the mail order pharmacy.  It's moving the fax machine from the office into the living room (because we neglected to hook up the office phone jack) so that I can fax documents to our insurance company.  It's going online to the insurance website and jumping through all the search hoops to find a doctor within a 30 mile radius who takes both my insurance AND new patients.  Taking a whole day to trek up to Boston to sit with my endocrinologist for an hour; another day to have the dilation drops plunked in and to have to wrangle someone to drive me home afterward.  It's a day away from my baby.  And from the work I enjoy doing.  And a day that someone else has to either watch BSparl or drive me or whatever.  It's a day that makes me resent diabetes just enough.  And it makes me admittedly grumpy because I really don't want to spend the day doing crap I don't enjoy.

An image from an older post about guilt, but the words I chose are blunt,
and I think if I made this same list today, it would read the same.

... sigh.  Fine.  I'll make the appointment.

Posted by Kerri Sparling at 10:48 AM | Permalink | Comments (34)

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

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

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

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

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

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Glucocoaster
A crazy CGM graph.  Antonym:  no-hitter

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

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

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

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

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

Juicer
Another term for "insulin pump"

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

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

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

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

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

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

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

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

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

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

Poker
Lancing device, also known as a "pokey"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*   *   *

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

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

The kid is mobile now, and with that mobility comes the baby-proofing of our home.  We have those little electrical socket covers on each outlet, the coffee table corners are capped with squishy edges, and a big ol' gate at the base of our staircase is locked and loaded.  So now, anything that BSparl shouldn't touch for fear of hurting herself is as carefully guarded as possible.

And I wish I could say the same for me.

Will power is not my middle name.  (It's "Morrone," switched from "Lynn" when I got married.)  I'm good when it comes to action-oriented plans, like resolving to test my blood sugar more often throughout the day, or making sure I exercise at least four times a week.  These plans involve getting up and doing something, and I'm motivated when it comes to checking that box. 

But the plan to NOT do something?  Little more challenging.  

Food has always been a bit of an issue for me.  Not surprising, since type 1 diabetes has a firm foothold in my dietary decisions and guilt about said decisions.  (Sneaking cookies?  I may have done that one or two ... thousand times as a kid.)  Growing up with type 1 diabetes and using the peaking insulins (NPH, Lente, UltraLente) that required timed meal structure, I was a card-carrying member of the "clean your plate or you will end up low" club.  It actually wasn't until I started using an insulin pump that I realized what "hungry" felt like, having been on an eating schedule for the previous seventeen years.  Adjusting to the fact that I didn't HAVE to eat was new.

In addition to that "Hey, hunger is confusing!" feeling, food is a confusing friend/enemy.  Frenemy.  Even at times when my blood sugars are completely in control and an Italian bread smothered in olive oil and salt indulgence-fest doesn't cause massive spikes, I still feel guilty about eating it.  Like someone is watching me, and I need to hurry up and swallow before they see me take the bread.  It's a very screwed up way to view something as fun and delicious as food, but it's a combination of the influence of diabetes on my food philosophy and the guilt assigned to something as benign as a banana.  (That, and how women are taught to view their bodies and their appetites of all kinds ... but that's a whole different post.)

Which brings me back to my problem:  not doing something. Avoiding certain foods at certain, inopportune diabetes times.  Not eating the bowl of pineapple when the Dexcom shows double arrows pointing up.  (Why IS it that high blood sugar equals ravenous hunger?  Seems like a cruel twist to me ...)  Not buying E.L. Fudge cookies.  And if you do buy them, not eating a whole sleeve on the ride home from the grocery store. 

Sometimes I want to Kerri-proof the kitchen.  

Maybe I should just stick an electrical socket cover in my mouth.

Posted by Kerri Sparling at 09:29 AM | Permalink | Comments (27)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

8:00pm – 276 mg/dL (no idea why)

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

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

1:45am – 33mg/dL (awesome)

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

Feeling pretty dia-successful.

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

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

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

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

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

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

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

*   *   *

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

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

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

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

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

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

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

Today is my birthday.  There's a good amount in my life that needs to be worked on, but there's so much that's great without effort.  Like my family.  And my littlest bird.  And all the support and inspiration I get from you guys.  I'm really grateful.

And I am happy.

Posted by Kerri Sparling at 09:24 AM | Permalink | Comments (58)

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

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

Thanks for the inspiration, diabetes postcard writer. 

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

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

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

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

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

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

My symptoms of low blood sugar used to run the gamut:  numb mouth, dizziness, sweating, crying at will, shakiness, inability to see completely clearly but a heightened sense of hearing ... fun stuff.  The symptoms of a low blood sugar can really suck.

But you know what sucks even more?  Not having any symptoms at all.

A few days ago, I was making lunch for BSparl and trying to clean up the kitchen (never a good idea at the same time), and my hands felt a little fluttery.  But nothing really worth paying attention to for more than a second.  BSparl devoured her rice cereal and mushed up bananas and then she was down for her nap. 

As I closed her bedroom door, I heard the Dexcom BEEEEEEP!ing from the kitchen counter.  There's a different sound associated with the "low" and "high" alarm, and I was surprised to hear the low alarm sounding.

"I feel fine."  I said, matter-of-factly, but not sure I meant it.  I did feel just slightly ... off.  Abby (the cat) meowed as she circled around my ankles.  But a swipe with my blood sugar meter showed me at 33 mg/dl.

Oh come on, Larry. I love you, man, but not like this.  Not as a blood sugar.  

The problem was that I didn't feel low.  At all.  I didn't have even a whisper of a hint from my body that my blood sugar was rapidly heading towards chaos.  If it hadn't been for the Dexcom, I'm not sure I would have tested.

Instead, I found myself standing in front of the fridge and sucking down grape juice straight from the bottle.  (Note:  Don't drink the juice at my house.  I've licked all the bottles.)  Auto-pilot kicked in and I treated that 33 mg/dl as though I could feel every bit of it.

Oddly, I didn't start to feel low for another five minutes or so, when my blood sugar started to come up a bit.  Such a strange thing, but when I'm coming up from a Larry low (read:  in the 30's), it doesn't throttle me until my blood sugar starts the journey back upwards.  Around the 50 mg/dl mark, I started to hit the sweats, the adrenaline panic, and that weird, white fog of precision that envelopes me when I'm low. 

This lack of symptoms has me very nervous lately.  I know that my numbers have been both pinging and ponging all over creation lately, but it's downright creepy when I'm at a blood sugar so close to chaos and I feel like I could happily climb into my car and start driving, or pick up my daughter and start dancing, or wait just a little while longer before deciding to have a snack.  My body doesn't give me the hints I need anymore, and I'm not sure why. 

Diabetes is messing with my head.

My paranoid (and hyper-sensitive) Dexcom continues to wail even after I'm back up to 70 mg/dl, but I find the noise comforting.  I know I'm back in range, and I don't have that feeling of confusion or fogginess.   

"I feel fine," I said again, only this time I meant it.  

Posted by Kerri Sparling at 10:19 AM | Permalink | Comments (29)

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

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

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

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

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

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

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

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

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

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

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

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

When did you start to gain your diabetes independence?

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

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

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

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

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

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

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

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

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

Despite diabetes, I've always felt like I was in "good health."  (Quotes are necessary, but even though I toted syringes around as a kid, I never felt like the "sick one."  Thus, making "good health" sort of a relative term.)  I have never broken a bone.  I don't often get colds or the flu.  While my friends were busy hacking up their lungs and hiding in their beds, nursing whatever plague ailed them, I was usually germ and virus free.

Until about three weeks ago.  

I don't know if BSparl weakened my immune system.  Or if the move to the new house/baby wrangling/excessive travel contributed to some major exhaustion.  Or diabetes just sort of reminding me "Hey, um ... still here."  (As though I could forget.)  Or if it's just some crazy perfect storm of chaos.  But whatever the cause, I'm currently inhabiting a swiftly failing body.

First off, my wrists are still a mess of tendinitis and carpal tunnel.   Physical therapy is definitely helping, but the process is very slow and since we're talking about my hands, it's not like I can go a day or two without using them.  (See also:  holding the baby, typing, carrying anything, putting on new infusion sets, testing blood sugar, picking up vital coffee cup)  Not to mention, the wrist braces at night aren't doing anything to go against that whole ROBOT feeling.

Secondly, I've been sick with some kind of freak show plague since the very beginning of November.  Started off with a sore throat, progressed to completely losing my voice, and then settled into this really lovely and incessant cough.  I haven't felt right or sounded right in three weeks.

And thirdly, while I was having a coughing fit last week, I felt this pop in my side and after being scrutinized by my best friend (the ER nurse), we both determined that I had bruised or cracked a rib from coughing.  Who does that?! So now every time I cough (which is thankfully becoming less frequent) or sneeze, the pain is pretty intense.

I deal with diabetes decently enough, but I have no patience for this extra crap.  Painful wrists?  Nagging cough?  Busted ribcage?  Hey pain, screw you and the horse you rode in on. ... and then I realize that the horse it rode in on is me, so I have to do something.

I finally have a doctor's appointment tomorrow afternoon to address the plague.  I have scheduled my physical therapy appointments.  And I'm not shy about taking pain reliever to help out with this rib thing.  I need to fix this swiftly failing body because I don't have the patience to deal with all the mess.  Besides, it's ANNOYING.  I don't like having to further dumb down my workouts because of these issues.  I don't like going in for a husband hug only to have to say "Be careful of my ribs!"  And nothing annoys me more than reaching down for my baby to score a snuggle, only to have the action punctuated with pain.    

So, to recap:  I am a ninety year old woman. 

I hope the mending comes quickly.  Chronic pain was not on my holiday "to do" list.

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

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

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

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

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

"Am I getting old?"  I asked BSparl.

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

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

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

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

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

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

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

"You okay?"  he asked.

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

This poor kid must have thought I was on drugs.

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

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

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

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

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

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

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

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

"Just tell me what line you can read.  Smallest one that's clear, okay?"

"Got it."  I looked across the room to the eye chart.  "SNDRZ.  That's the smallest one that's clear."  

"Awesome.  20/16 vision.  Better than 20/20, my friend!"  The eye technician made a note in my chart, and then came over to apply the eye dilation drops to the inside of my lower lid.

"So now I go sit in the depressing waiting room and wait until I'm dilated?" I asked her, standing up from the examination chair.

"The depressing room?"

"Yeah, the one where there are mostly older people and almost everyone is using a cane and being escorted by a family member or something.  Not exactly uplifting."  I don't know why I had a chip on my shoulder.

"I never thought about that.  But yes, that room.  There's a big TV, though.  That's uplifting, right?"

I smiled at her.  "I'll take it."  

I wandered out into the eye dilation waiting room to let a few minutes pass as my pupils freaked out.  I tried to look at my phone but my vision was starting to sparkle-motion on me and I couldn't see a thing.  So I watched the history of Boston (and how Back Bay was literally the back bay of Boston) and waited.

Eventually, I was called into the office, and my ophthalmologist shined the bright light in my eyes while she asked me a few questions.

"So you had the baby!  How old is she now?"

"She's six and a half months.  I love her.  She's awesome."

"Good, good.  So have you had any issues with your vision?  Any changes that you've noticed?"

"Sort of.  I have this bit of cloudiness in my right eye.  Over on the far right side.  I'm not sure if it's exhaustion or eye strain from too much computer work, but it's the biggest change I've noticed."  

"Okay."  She took to my right eye and looked around for a while.  

"Anything?"  I asked.  I just wanted to know.

"No, nothing in that area.  You might just have some dry eye moments or eye strain, like you said."  

I let out this breath I didn't realize I was holding.  

"But there is some retinopathy.  And some macular edema.  Just a little bit - more in the right eye than in the left - so we're going to keep very close watch on this.  It could get better, it could get worse.  There's unfortunately no telling."

"So it's worse than before the pregnancy?"

"Yes.  You've gone from mild non-proliferative to moderate.  And that's okay.  We can handle that."

She kept talking, and I was listening to every word she was saying.  I heard the words "blood pressure" and "laser surgery in the future, but not now."  I heard her tell me that laser surgery wasn't necessary at this point, and that we wanted to schedule a four month follow up.  I heard her tell me that my eyes were still in good shape, considering 24 years with type 1 and my recent pregnancy.  And I heard her say that this wasn't something to completely panic about - just something to watch closely.

I heard all this.  I heard her reassuring me.  And I felt this weird combination of relief and sadness.  Because I'm in it, now.  Eye complications.  I won't be holding my breath during eye exams any more, because I'm not waiting for the change, for that first moment of "Oh, you have retinopathy."  I know it's there.  I have hope that it will repair itself, and that better diabetes control can contribute to faster healing.

We talked for a bit, and I fumbled with my phone to show her pictures of the baby.  I visited the retina photographer and had a few photos of my eyes taken, and then I ventured out to the parking garage to retrieve my car. 

I thought I might cry, but I didn't.  I thought about calling Chris or my mom to tell them the news, but I didn't do that either.  I sat in the car for a few minutes, listening to the sounds of Boston churning around me.  It felt good to just enjoy the silence.  It was going to be fine.  Things were progressing in my eyes and that was to be expected, after two decades with type 1 and the effects of a pregnancy.  It's not time to panic yet.  It's just time to be aware.

I can handle this. 

Posted by Kerri Sparling at 09:24 AM | Permalink | Comments (59)

Back in February 2009, I was diagnosed with tendinitis, in large part thanks to the mass amounts of computer work I was doing.  All that mousing took a toll on my wrist, leaving my tendons swollen and all -itis'ed.  I made some changes in efforts to alleviate the pain, but eventually I caved and received a cortisone injection.

And then some things happened.  Like a pregnancy.  And leaving my old job in pursuit of being a work-from-home pregnant lady and now a work-from-home mom. 

My hands?  Never got that break they needed.  And now the tendinitis has moved from the outside of my wrists to the interior.  It started just after BSparl was born, when I was breastfeeding.  The hand positions required to keep the baby latched on properly weakened the tendons in my hand.  And as BSparl got bigger and bigger, the stress of putting the baby in her carseat and into her crib made the tendons in my hands swell to epic proportions.  Even stopping breastfeeding didn't give me any relief in the hand department. 

I was permanently in pain.

After much prodding from Chris ("Baby, call the physical therapist."  "Call them today?"  "If you don't call them, I'm calling them for you."), I finally made an appointment with the physical therapist.  

"Hi.  I'm K.  I'm going to help ease this pain for you, okay?"  said the physical therapist as she met me in the waiting room.  (Already a 180 degree difference from my interview with the primary care physician.)

"Yes, please.  I've had this pain since before I had my daughter, but since her birth, it's shifted from the outside of my wrist to the inside.  I'm having trouble picking her up, putting her in the carseat, and getting her up from her crib.  Oh, and opening jars.  And turning doorknob."  I shrugged.  "Anything that requires my hands."

"Let's figure out what's going on."

I'd never been to a physical therapist before, and I resisted it because I felt like I should be able to get rid of this pain on my own.  It's not like I can't walk - it's just wrist pain. 

"I'm going to measure the mobility you have in your wrists now, okay?"  the PT asked, and I nodded.  We then went through a series of wrist mobility exercises which she measured with what looked like a plastic protractor.   And it was then that I realized how little comfortable movement I had in my hands.

"You are in a lot of pain throughout the day?  Okay, we need to take some of the stress away from your wrists.  What do you do for work?"

I laughed.  "I am a writer.  I work on the computer for several hours a day."

She laughed, too.  "That doesn't help.  How about when you aren't working?"

"I have a six and a half month old daughter.  And I work from home so I can take care of her, so I'm either typing or toting her around."

"I'm not surprised.  I've examined the inflammation in your hands and did you know there's actually a tendinitis called De Quervain's tenosynovitis that occurs in new moms a lot.  It's exacerbated by the motion of picking up the baby."

"Wow.  So is that what I'm dealing with?  This decoupage syndome?"  (I am clueless.)

"De Quervain's.  And yes.  You also have the very beginning of carpal tunnel, but we're catching it early.  I'm hopeful that eight weeks of physical therapy twice a week, in conjunction with hand exercises done every day at home, that you'll have marked relief.  I don't want to make any promises, but I know we can help you out."

For the rest of the appointment, we spent time reviewing the exercises I was to complete twice a day at home.  (These exercises make it look like I'm painstakingly waving at someone, in slow motion.  Chris is confused by this.  "Are you waving at me?"  "No, I'm gliding my tendons.  What, that's not cool?")  And the PT also used an ultrasound machine to pulse heat and vibrations into my tendons to help ease the swelling.  (It was kind of neat to have an ultrasound that didn't show a baby bouncing around in there.  New experience for me.)  And I've also been prescribed two wrist braces to wear while I sleep to help keep my hands in a "neutral" position.  (And I've tried wearing the braces to bed for the last three nights, but somehow, in the middle of the night, I end up taking them off.  While I'm sleeping.  Very odd.)  I'm trying out everything I can in efforts to rid my wrists of this pain. 

I'm hoping to see some relief in the next eight weeks, and I'm cautiously optimistic that I'll feel close to 90% once the physical therapy sessions are over. 

(And, for the record, this is the way a doctor's office should be run.  Attentive staff, clean environment, medical professionals who make eye contact with their patients, and a discussion about payment after they learned my name, not before.  These small things make a big difference in patient experience, and I'd give this PT office a referral any time.)

Posted by Kerri Sparling at 10:29 AM | Permalink | Comments (20)

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

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

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

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

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

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

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

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

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

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

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

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

Dead-in-bed is the exception.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Sparling at 10:42 AM | Permalink | Comments (13)

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

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

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

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

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

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

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

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

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

Posted by Kerri Sparling at 09:28 AM | Permalink | Comments (23)

Tomorrow is my 24th anniversary with type 1 diabetes. 

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

I am grateful for all of these things.  

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

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

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

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

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

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

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

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

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

I don't run.  Not well, anyway.  Running isn't my activity of choice because my body doesn't do well at high speeds.  But when I go walking or any other exercise that's outside and brings me far away from my car, I grapple with that whole "what the hell do I do with my diabetes supplies" issue.

For the most part, I usually carry a small bag.  Sometimes I bust out the meter from it's protective black case and throw it into a SpiBelt, adding in a tube of glucose tabs and my keys and cell phone and ... suddenly, I'm a pack mule, careening up the mountainside. 

I am not a "travel light" diabetic.  I'm a messy, throw-it-all-in-a-bag-and-hope-you-don't-lose-the-bag diabetic.  But some PWDs have figured out a terrific way to keep tabs on their diabetes while exercising.  Like my friend Melissa (a fellow Clara Barton Camp alum), who MacGyver'd her meter into her running shoes.  Here's a shot of her kicks, that she's graciously allowed me to share with you guys:

Photo credit to Melissa K.  She also has a series of glucose stashes on her run route, in case of a low.  Clever girl!  (But no, I have no idea where she keeps the actual test strips.  You'll have to ask her.)

I think this is brilliant!  How do you keep your supplies at the ready when you're on the run - literally?  Are you like me, with an awkward bag of everything, or are you as streamlined as the pictured PWD?

Posted by Kerri Sparling at 09:22 AM | Permalink | Comments (35)

I woke up yesterday morning at a blood sugar of 158 mg/dl.  A little on the spikey side, but no worries - after I breastfeed BSparl, I usually drop about 40 points, so I figured I'd use her feeding as my "bolus."  By 8:45 am, I was down to 129 mg/dl.  And then things hit a downward slide that I couldn't control.  

Over the course of the next five hours, I tested several times and saw the numbers tumbling all over the place.  At one point, I had to leave the baby fussing in her crib because I was attending to a 38 mg/dl.  The next blood sugar I saw was 29 mg/dl.  And then 61 mg/dl.  And then 55 mg/dl.  Hours were going by, and carbs were being consumed, but they weren't making a dent on the determined low blood sugar. 

BEEEEEEEEEEEEEP!

Dexcom wailing to let me know I was, once again, under 50 mg/dl.

Shunk.

Another blood sugar test confirmed yet another low.

Hours kept ticking by but I wasn't coming up. It took until 4 pm to see a blood sugar over 100 mg/dl, and then all hell broke loose on the other side.  After over eight hours wrestling with a low blood sugar, my body decided to flip upside down and let all the hourglass sands go to the other side, sending my numbers up into the 400's.  Why on Earth was I low for so long?  And why did I rebound so hard after treating the multiple lows modestly?  

(I keep picturing the carbs, hiding out behind my lungs, waiting to actually enter my blood stream and then all screaming in at once.  "Ahhhhhhhhhhhh!!!" waging war, holding pixie sticks over their heads as they come charging in, full force, for the freaking rebound.)

Which, of course, happened in full force with a gorgeous 405 mg/dl around 9:30 pm.  Yes, I lost track of time between 6 - 9 pm, when apparently the Dexcom graph shows a sharp spike upward.  But still - low all day?  ALL day?  

You know it's been a rough diabetes day when your total dose from 7 am - 6 pm is only 8u, yet your 6 pm - midnight dose is 29u. Diabetes kicked my hat.  Kicked it right-proper.

(We're definitely installing this emergency box.  If nothing else, at least lows will be delicious.)

Posted by Kerri Sparling at 08:22 AM | Permalink | Comments (33)

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

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

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

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

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

Fear?  No thanks.  Give me hope any day.

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

Terrible habit, sarcasm.  Especially the "your mom" retort.  Like when my college roommates are out at the bar and someone asks for another beer.  Instantly, "Your mom wants another beer."  Immature retort?  Indeed.  But almost reflexive at this point?  Unfortunately, indeed again. 

(This intro has a point - bear with me.)

This morning, I woke up with my first bad low in a while.  For the last month or so, I haven't seen lows worse than 55 mg/dl, and my sensitivity to the symptoms seems to have increased a bit.  But while the lows of the last few weeks have felt mild, this morning's 49 mg/dl raked me over a little bit.

I woke up feeling groggy and warm, despite the air conditioning and the fact that I'd slept about seven hours straight.  (Yay for Sleeping-Through-the-Night-in-her-New-Crib BSparl!) The corners of my mouth were numb and I felt like my whole brain was encased in cotton balls.  I reached for the black meter case and brought it close to me in bed.  Fully intended to test.  But instead fell back asleep for a few minutes, with my meter snuggled against me.

Once I did wake back up, it had been another eight minutes.  And my symptoms were progressing, giving rise to shaking hands in addition to the cotton ball veil.  But it's strange, where my brain goes when I'm low.  I had a juice box right on the bedside table.  I knew I was low and didn't need to test to confirm, but I was on some kind of OCD autopilot.  I had to test.  Instead of grabbing the juice from beside me, I instead grabbed my meter from the bed, walked out into the kitchen, and set up the machine on the counter top. 

BEEP!

Shunk.

49 mg/dl.

"Okay,"  I said out loud, and took some glucose tabs from the cupboard.  (Chompy, chompy ... always a weird effort to get those things chewed up when I'm that low.) 

And then I heard BSparl stirring in the next room.   Not crying, but just stretching her little BSparly legs and easing into the morning routine.  I went in to stand at the side of her crib while I waited for my blood sugar to rise. 

"Hey sweetie girl.  Good morning!"

She kicked her legs and grinned at me.

"Hi!  Hang on just a few minutes, okay?  I'm having a low blood sugar and I need to wait before I get you up.  Just another minute or so.  I'm low.  Your mom is low."

And I thought of my roommates tossing the "your mom" retorts around with reckless abandon. I stood there giggling like a fool for at least a minute, the smile of irony on my face causing my daughter to bust out with an even bigger smile. 

"That's right, baby girl.  Your mom is low."  

Finally - FINALLY - the "your mom" actually makes sense.  (And with that, I've come full circle.)

Posted by Kerri Sparling at 09:12 AM | Permalink | Comments (18)

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

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

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

This is not a trend I want sticking.

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

This is not a trend I want sticking, either.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bernard, Amy, Kerri, and Scotty J!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For anyone who has been reading my blog since my engagement three years ago, you know that motherhood has been on my radar for a long time.  Longer than marriage.  That quest for a decent A1C, that desire for a "normal" pregnancy, and that hope for a happy and healthy baby.

Part of the reason I wanted to write about my pregnancy here on SUM is because there wasn't a lot of information out there about pre-existing diabetes and pregnancy.  There was a LOT of information on gestational diabetes (obviously), and type 2 diabetes got some good press, but type 1 was sort of swept under the rug.  Thankfully, there were a few diabetes bloggers who had chronicled their journeys, and I wanted to add my voice to that hopeful chorus.   

But also thankfully, Cheryl Alkon had taken the topic to her publisher, and she penned the first book on managing pre-existing diabetes and pregnancy.  And I'm very honored to have been both featured in her book (as a women preparing for pregnancy) and to have her contributing here on SUM:

Doom and gloom. That was the message I got several years ago when I first thought about trying to have a baby while also dealing with my type 1 diabetes. Whether at the doctor's office, going online, or reading the very few books about the subject, trying to get and be pregnant while managing blood sugars, taking insulin, closely counting carbs (and avoiding a lot of low-carb proteins that were good for blood sugars, but bad for babies-to-be) all sounded like a nearly impossible task. One fraught with higher risks of birth defects, overweight babies, worsened diabetes complications, and more.

But I also saw type 1 friends who had healthy babies and sensed what could be possible. This spurred me to research, craft a book proposal, and eventually devote myself to publishing an insider's guide to pregnancy with type 1 or type 2 diabetes. I'm thrilled to say that, five years later, "Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby" was published by Demos Health this spring, and has been enthusiastically welcomed by others who, like me, craved the inside story about how to have a healthy pregnancy and baby while managing diabetes.

I had the pleasure of receiving an advance copy of Cheryl's book just before my baby was born, and even though I was in my third trimester and just weeks away from delivering my daughter, it was so reassuring to read about all the things that could go right.  A diabetic pregnancy is a high-risk one, and the challenges can lead to some tough emotional roller coasters and some scary medical experiences (see also:  stuck in the hospital for a month) - but these pregnancies can also lead to a healthy, happy baby.  (See also:  BSparl)  Touching on everything from pre-conception to managing the months of the pregnancy to post-delivery recovery and how to wrangle in diabetes control once again, this book was exactly what I needed to read while pregnant with my daughter.  I only wish it had gone to press before I had conceived!

If you are a woman with diabetes and you're thinking about becoming pregnant, this book is a good resource for you.  If you are the partner of a WWD (woman with diabetes) and you want the full story on how pregnancy and diabetes can mix, this book is a good resource for you, too.  And if you are the parent of a woman with diabetes and you want to know that your child can have the same chances of a healthy pregnancy as any other woman, this book is a good resource for you as well.  

Cheryl will actually be speaking in Boston in the coming weeks (the first event being THIS WEDNESDAY - sign up!), so if you'd like to hear more from Cheryl in person (and meet my endocrinologist, who consulted on the book with Cheryl), you can attend a discussion this Wednesday.  For more details on upcoming events, check out Cheryl's post on her blog.

Thank you, Cheryl, for giving new moms and moms-to-be with diabetes a sense of peace.  And congratulations on your BIG ANNOUNCEMENT on your blog today!

Posted by Kerri Sparling at 10:01 AM | Permalink | Comments (17)

For the last year of my life, it's been a monthly visit to the endocrinologist, and then once I was pregnant, the dam broke loose and I basically had a cot set up at the Beth Israel/Joslin pregnancy clinic.  Oh yeah, and then I spent a month at the hospital while waiting for BSparl. 

I have doctor burnout, big time.

So I'm done with doctor's appointments for at least a few weeks.  Mentally, at least.  (Because there is another one scheduled for August - WTF?)  But last week, I had my last appointment, for a while.  I was up at BIDMC for my "six week follow up" appointment (which took place seven weeks after the birth), and I met first with my endocrinologist. 

"How are you feeling?"

"Tired.  That's normal for a new mom, right?"

"Exhausted is more normal," she said, as she opened up my file on the computer.  We ran through my vitals, going over the medications I'm taking, the ones I'm not bothering with anymore, and how my blood sugars have been reacting to new mommyhood.  

"I've had some really good days, but the bad days are like epically bad.  Like 300's and 400's kind of bad," I said, looking at the floor.

"We want to prevent those highs, and the lows that either cause them or follow them, but you aren't the first postpartum patient I've seen who is hitting these kinds of numbers.  It's normal.  You'll even out," she said.

My basal rates seemed to be okay, but we did some tweaking to my afternoon/evening insulin:carb ratios (going from 1:12 to 1:15, which is math beyond my capacity).  Overall, I've had some nasty numbers, but my endocrinologist reassured me that my A1C wouldn't be too awful, because I wasn't letting any of those numbers ride.  (And when she called me on Monday to let me know what my lab work results were, my A1C was sitting comfortably at 7.0%.  Some people might call that too high, but I'm calling it a wicked victory for me.)

After I met with my endo, I was off for my exam with the OB/GYN.  Not to be terribly TMI, but I can't stand the pelvic exams.  They are unholy and cruel and a very strange way to spend an afternoon.  (Not only that, but I can't figure out why I'm not allowed to greet the doctor while I'm dressed.  No, they send her in only after I'm clad in the awkward paper johnny, with my regular clothes balled up on the chair near the examining table.  And it was the first time I had met with that specific OB.  "Nice to meet you, too!  This is my floppy body.") 

Thankfully, I appear to be healing well, both inside and out.  My c-section incision doesn't hurt anymore, and even though my lower abdominal muscles are currently useless and squishy, I am recovering like a "normal person."  (Read:  Not a diabetic who has seen 400's three times in the last eight weeks.  Nasty.)  There is still a little bit of light bleeding (not from the scar, silly), but my doctors told me the bleeding can last as long as nine weeks.  (Yay.)  The scar is shorter, and a light pink color as it attempts to heal.  I can't see the staple holes anymore, and when I spy the scar in the mirror, I don't want to jump out the window due to grossed-out'ed-ness.  That's progress!

So I'm cleared for "normal life," which includes being able to pick up the carseat while the baby is in it, which means I am no longer tied to my house.  THANK GOD, because I swear I was hearing the cats talk about me - in ENGLISH - which means my mind was starting to leak out.  Onward!  To normal life!

(Normal life - ha!  That's redefined with each messy diaper and baby smile.)

Posted by Kerri Sparling at 11:55 AM | Permalink | Comments (9)

You know you're a diabetic mommy when ...

• The bottle of glucose tabs is just as important as the bottle of breast milk in the diaper bag.
• You have already started wondering how you're going to explain "juice" as "medicine" to the kiddo.
• When you wake up for 3 am feedings, they double as a 3 am blood sugar check.
  
• You start cooing sweetly at your meter when it gives you a result of 100 mg/dl.  ("Oooh, what a good meter you are!  Yes you are!")
  
• Your baby ends up with a dot of blood on the back of her pajamas from your middle-of-the-night blood sugar check that didn't stop bleeding right away.
• When you talk about "the pump," you need to clarify "the insulin one, not the boob one."
• Sometimes you have to draw numbers to see who gets to feed the baby.  And by "draw," we mean blood samples.
• Nothing makes you happier than a full baby with a clean diaper and a full pump with a full battery.
• You need a diaper bag just for diabetes supplies.
• Your bedside table has just as many burp clothes as used test strips gathered at its base.

Posted by Kerri Sparling at 09:55 AM | Permalink | Comments (26)

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

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

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

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

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

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

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

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

Oxygen mask, you know?

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

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

It's The Suck.

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

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

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

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

"36 mg/dl"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DING!!!  Game on.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Game Over ... until 5 am.  :)

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

Posted by Kerri Sparling at 08:45 AM | Permalink | Comments (13)

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

Here's what I know so far:

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

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

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

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

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

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

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

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

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

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

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

Little on the down side today, thanks to having just marked one week "in" and with still two to go.  What the hell is there to write about, from the mind-numbing confines of my hospital bed?

At the moment, BSparl and I are hooked up to the fetal monitoring system, and I can hear her heartbeat pumping along like a rhythmic Clydesdale and can see the movements of her little 5lb, 5oz body being tracked on the graph.  It looks almost seismic, like a BSparl earthquake.  

They haven't checked the protein levels in my urine in a day or two, but things appear to be holding steady.  Blood pressure is climbing ever-so-slightly, but monitored constantly, and there's room for titration in my Labetalol medication (read:  they can give me more of that crap).  Still rockin' the heparin injections twice a day (hate) and still not sleeping through the night thanks to the monitoring.  (Which I understand the necessity of, but it's not making for "relaxing bed rest."  Bed rest is a misnomer.  This is more like jail where the wardens grin and mean well.)

One of the hurdles I'm having a little trouble with is the diabetes management aspect of things.  The Joslin team comes by once a day to review blood sugars and make suggestions, and they are the experts in all-things diabetes.  However, I am the expert in all things specific to MY diabetes, so I've been working hard to achieve a tolerable blend there.

For example, one of the (very nice, very knowledgeable, mind you) endocrinologists had some commentary about a post-prandial blood sugar of 137 mg/dl that I had two days ago.  In my mind, 137 mg/dl an hour after eating is downright badass, and I'm very happy with it, especially considering that the pre-meal number was 84 mg/dl.  Good control, in my eyes.  

"Well, this is a little high.  We'd like to get this post down."

I don't mean to be rude.  I try to be a good patient, a "patient" patient, and to find that careful blend I had mentioned, the one of my non-medical knowledge and their medical knowledge of diabetes.  But it was 8 in the morning.  And it was the third time I had been woken up by a doctor who wanted to review my goods.  And I didn't agree that 137 mg/dl post-prandial was too high.

"Really?  Too high?  I don't see it that way.  I think that's a number to aim for, especially seeing as how I leveled out to 98 mg/dl at the two hour mark.  That's a respectable peak, don't you think?  Otherwise, I'd be treating a low at the two hour mark."

"Yes, but it should be lower than that."

And I sort of lost my cool.  

"Okay, well how about we all call the FDA and get them to tighten up their requirements for 'what's accurate' to something a little more precise than 20%, and then we can start griping about a 137.  Because for all we know, that 137 mg/dl could actually have been a 110 mg/dl, and then I'm right in the acceptable range, right?"

(I am Kerri's terrible, bedrest-fueled, pregnant rage.)

They agreed that 137 was okay.  And that revisiting my post-prandials after another day of review would be a good idea.  And then the fleet of them shuffled out the door.  I felt bad about blowing off steam, but really - I'm in no way a "perfect diabetic," but these days, I'm running really tight and carefully with my numbers.  Let's remember that the reason I'm having post-prandial peaks is because - oh yeah - I have diabetes?

It's challenging, that feeling of having people take my diabetes management control away from me.  Not that I have all the answers or have it all figured out, but I've been living with this a long time and my own instincts and experience should be as strongly considered as the vast medical knowledge of my new, trusted caregivers here.  I'm no diabetes expert, but I'm pretty well-versed when it comes to "Kerri."  ;)

Eventually, I'll find a way to balance my issues with control while "in captivity," but until then, I may need to vent here a bit.  Because I'm pretty sure they're not reading me. 

... Whoops.

Posted by Kerri Sparling at 12:07 PM | Permalink | Comments (61)

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

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

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

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

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

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

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

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

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

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 Sparling at 09:57 AM | Permalink | Comments (32)

There's been a handful of photographers who have tackled the Diabetes 365 project for this year, and I'm proud to be in their company.  It's a very inspiring experience, to see how diabetes is reflected in the lives of the members of D365, and how it is captured through their camera lenses.

Some of us are using our DSLR cameras, some of us our point-and-shoots, some documenting with our iPhones or our Blackberries, but every last one of us is showing our lives with diabetes, every day.  I know I've talked about this project before, but watching the photos stack up in the Diabetes 365 Flickr group and seeing how, and what, people with diabetes are choosing to document their lives with this disease is incredible.

You didn't need to join the group in January - it's a rotating door of participants.  If you want to join the Diabetes 365 group, you can jump in anytime and start.  Every day can be Day 1.  

Posted by Kerri Sparling at 09:49 AM | Permalink | Comments (7)

I love "free shower" - which, if you're diabetic and using an insulin pump or a CGM, you know that means "the shower when you're changing sites and you don't have any hubs connected to you."

It's nice to lather up and not worry about catching on an infusion set or a sensor edge.  Thing is, this is what's waiting for me when I'm done getting all cleaned up:

The potlock o' diabetes crap

Yesterday was "free shower" day for me, which is a rarity now that I'm wearing two devices.  The chances of an insulin pump change synching up with a Dexcom sensor change are pretty low, so when I'm swapping both, it's particularly nice.  And this scene on the bathroom counter is what needs to be reapplied after the fact.

That's the potluck of diabetes devices:  the Dexcom sensor, transmitter, and receiver, and then the insulin pump, infusion set, cartridge, and little bits associated with pump site changes (like that all-important insulin).   If you look fast, you can almost fool yourself into thinking it's a photo of make-up stuff, like any lady would have on her bathroom counter.  But the Sparlings don't have a "powder room," - we have a "site change room." 

I'm adjusting, though.  Don't we all?  Back when I first started pumping, I was freaked out about the whole "external symptom" because I'd existed 17 years without one.  Popping in those first infusion sets and clipping on the pump was a very surreal experience, and one that it took me some time to get used to.  ("Do I look like a robot?  Not really, but sort of.  Am I okay with looking a little like a robot?  Do I get special powers?  No?  That's only super heroes?  Okay, well what do robots get?  They're maids on the Jetsons?  WTF?"  The internal monologue was constant back in those days.)  Adding in the Dexcom sensor and receiver sent me back into that "Wait a minute ... I'm now like a SuperRobot!" mode. 

But now, it's been six years with a pump.  And almost two and a half years with the Dexcom.  So while free showers are nice and I like that feeling of not having anything attached, once I put on the new sensor and the fresh infusion set, I still felt fine.  The sites don't look so scary anymore. 

They look ... almost right.

(Note:  But it may be the ever-growing belly that's making things look more proportionate lately.  Ask me in eight weeks. :) )

Posted by Kerri Sparling at 11:10 AM | Permalink | Comments (18)

We'll start with The Bad:

• Getting my sorry arse to Boston proper yesterday should have been a quick ride.  My first appointment was at 8 am, I was leaving my house with an hour and 15 minutes to spare (I had hopes of grabbing breakfast before my appointment and getting a little work done on the trusty laptop) but traffic on the way into the city dashed all hopes of getting there on time.  It took me two hours and fifteen minutes to make a 35 minute drive.  Needless to say, I was livid by the time I had arrived at Joslin.
• And while I'm driving, I'm watching my blood sugar climb.  Crap on several levels, because as I edged closer to 170 mg/dl, I started to wonder if my insulin to carb ratio needed to be changed, I fretted about the effects on the baby, and I also realized that two hours in the car at an elevated blood sugar equaled "OMG I have to pee like you read about."
• Also, felt a dampness in my armpit and became disgusted with myself, realizing I was sweating through my shirt?  Gross, Kerri.  That's just gross.
• Arrived at my appointment 30 minutes late, they squeezed me in, and after I gave a urine sample, they told me that I was spilling ketones for the first time in my pregnancy.  FanTAStic.

Which leads me into The Eh:

• Turns out that my blood sugar was climbing because my infusion set wasn't connected to my body.  The pump was on my hip, the site in my arm, but the two weren't joined at the set, leaving every bolus and every basal unit pooling into my armpit.  Thus explaining the stain on my shirt (and the fact that what I thought was sweat was, instead, vital insulin units).  Two hours without insulin explained the high, the headache, and the ketones.  And also made me feel extremely dumb.
  
• My eye dilation was deemed "inconclusive" by the retinologist.  She said that my right eye was perfectly fine, but the left did still have two spots close to the macula.  Again, less an issue with the spots themselves and more with their precarious location.  "But I feel comfortable with you attempting a vaginal delivery.  But if you have a long labor, or a difficult labor, you'll need to have a c-section."  My initial response was "Oh, but I'd really like a healthy baby and healthy eyes for myself, so would a section be a better chance at having both?  Or do you just want me to push, possibly harm my left eye, and then possibly still have the c-section?  Does not compute."

But thankfully, there's still The Good:

• BSparl remains at a steady, healthy weight, and her heartbeat was lovely enough to make my own skip a beat.
• My doctor called me at nine o'clock last night to tell me that she reviewed my eye exam with the other high risk OB/GYN and they feel confident in recommending a c-section.  Their main concern is the Factor V Leiden issue, which could cause a clotting concern with the delivery wound, but I've already had my medical team advise me that I'd be on Heparin for a few weeks after delivery.  They just want the baby out safely, and for my eyes to remain intact.  I'm on board for that, as I'd like to be able to clearly see this creature we've created. 
• And now I know how she's arriving, and I can start Googling that and freaking out.  No, I know not to Google and not to completely melt down.  But honestly, the whole "giving birth" thing, no matter the method, has made me nervous for years.  And it's strange to know that in eight weeks, I'll be doing it.

Which brings me to the best part of The Good:  Only 64 days until I can hold her in my arms and tell her I love her.   It's on. 

Posted by Kerri Sparling at 09:29 AM | Permalink | Comments (35)

I love BSparl.  I love her little feet and her pouty lips and that feeling I get when she rolls around inside of me.  I love knowing that my daughter is just a few weeks away from becoming a part of our Sparling family, and I know that every moment of this pregnancy is completely worth every iota of effort and worry.

That being said ...

I'm starting to lose my mind a little bit.

I've blogged about the details of the doctor's appointments, and the ultrasound scans, and the way that diabetes has impacted my pregnancy, and vice versa.  But by the end of my posts, I feel better having purged the feelings and worry.  And I want to reassure women who have type 1 diabetes that a pregnancy is possible, and enjoyable, and like they all say - so, so worth it.

But, like I said, I'm starting to crack a bit.  On Tuesday, I'll be at 30 weeks, seven and a half months pregnant with just under nine weeks left to go.  And these last few weeks have been ... well, not exactly rainbows and unicorns.

• Like last week, when a string of 200's had me bump my basal so high, on the heels of amped up nerves, that I overdid it and ended up with two 50 mg/dl's in the middle of the night.
• Or on Monday, when a carefully measured breakfast and a carefully calculated bolus, delivered 45 minutes before the meal, sent my blood sugars rocketing up to 248 mg/dl and held there for two hours.  
• Or the other day, when i realized that pregnancy is actually ten months long, not nine.  Damn lunar months, and why the hell didn't someone give me a head's up about that?
• Or that yesterday, Joslin gave me the run down on the rest of my appointments that are scheduled.  There are 20 of them.  I don't understand how people manage a high risk pregnancy and keep their jobs. 
  
• Or that next week, I'm having the eye dilation that will determine BSparl's method of arrival, and I'm really nervous about it.  I'm nervous about vaginal birth or c-section.  Doesn't matter.  Just "giving birth" has my stomach twisty.
  
• Or the fact that I'm craving carbs (nasty carbs, like cheeseburgers and chicken nuggets and pastries) and am having a very hard time not caving to these cravings.  I can't have anything even close to a sleeve of Ritz crackers in the house or they will disappear within a day's time.  I'm ravenous for these rotten carbs, and I've crocheted three scarves in efforts to curb the cravings.
• Or that every time my numbers are out of range, I want to hold her little hands and tell her I'm sorry.
  
• Or yesterday, when a perfect Dexcom flatline overnight was shaken by a cheese stick and a cup of decaf tea, leaving me with a blood sugar of 350 mg/dl and on the cusp of a panic attack.  What does this do to my baby?  Is she okay when I'm spending an hour over 300 mg/dl, without much food at all in my system?  Does she hurt when I am chugging water and stressing out but trying to control my emotions because I want her little womb to be serene and calm, not the spin cycle of diabetes chaos that I am so good at tossing her into lately?

Diabetics have healthy babies all the time.  I know this.  I've read this, others have proven this, and I hope to write those words myself in a few weeks.  But honestly, the mental part of pregnancy is more than I was prepared to deal with.  The guilt of every blood sugar and every miscalculation makes my heart ache, and I have found myself praying more in the last seven months than I ever have the thirty years before. 

I want to paint that "rainbows and unicorns" picture for you guys.  I want to make pregnancy seem like it's the most beautiful thing on the planet and even a person with type 1 diabetes can see the nine (ten?!) months through safely.  But as my delivery date draws closer, I'm not sure.  And I'm scared.  And I feel stupid because I have zero control over my emotions these days, leaving plenty of tears in my wake. (I've become a mega-wuss.)

Ugh, downer of a post.  I really can't wait to have the baby, but I know that part of why I want her out is because I believe she'll be safer once she's in the world and outside of me.  I know that Chris and I can take care of her, as parents, and keep her as safe as any other couple who loves their child.  It's the whole "now" process that has me in knots, wondering if I'm taking good care of her now.  I want the absolute best for my daughter, and I feel so guilty because I know that my body creates a challenge in some ways.

Just a few more weeks.  Every test, every infusion set change, every moment of blood work, every doctor's appointment, every time I pay the co-pay or the parking garage fee, every refilled prescription, every new CGM sensor, every curbed craving ... everything.  Everything is worth it if I can get to the end of this and have her out, safely. 

And then she and I will get matching mommy and daughter tattoos - hers a rainbow, and mine a unicorn.

(Note to people who may think I've completely lost my mind:  Kidding about the tattoos.  But I might buy her a t-shirt.)

Posted by Kerri Sparling at 10:43 AM | Permalink | Comments (42)

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

*   *   *

Pilgrimage

Shortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

*   *   *

Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

Posted by Kerri Sparling at 10:21 AM | Permalink | Comments (12)

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 Sparling at 09:12 AM | Permalink | Comments (51)

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 Sparling at 10:37 AM | Permalink | Comments (50)

I opened this gift that arrived in the mail, and almost burst into tears because I hope, hope, hope this is the case for my daughter.

(This photo is also part of today's Diabetes 365)

I was thinking about how much planning and effort has gone into this pregnancy, from a diabetes perspective - never mind the regular gearing up that parents-in-training go through.  Chris and I have worked very hard, as a team, to manage my diabetes in efforts to get pregnant, and now that BSparl is in there baking cookies (or whatever it is she does all day), diabetes focus has turned up even higher in our household.

I'm blowing through test strips like a champ, wearing the Dexcom to help me keep track of the constantly-changing numbers, using an insulin pump, trying hard to eat healthy (even though I'm currently weighing the pros and cons of a red velvet cheesecake - recipe link courtesy of my friend Elizabeth Arnold), and making feeble attempts to get a workout in here and there.  Managing diabetes has become, seriously, a full-time job as my pregnancy rockets into the third trimester.

But I wonder what she'll think when she arrives.  And how much things will change.  Will she understand when I need to eat before she does, sometimes?  Will she feel upset if I need a few minutes to get myself together before I'm able to play with her?  Will she think I'm cramping her diaper bag style if I shove my meter in there, alongside her wipes and her binky?  Will she wonder what's wrong with my priorities when I refuse to share my juice box with her on our future playground dates?

Will she understand that even though that t-shirt will only fit her for a few weeks and she may not even remember it, but will she know that her diabetic mommy loves her, and has loved her since the moment she knew she carried her?

(And will she forgive her for all the third-person dialog?  Maybe not.)

I'm heading to Joslin again today, for the first of my four seven-months-pregnant appointments.  Chris and I will see our baby girl through the magic of ultrasounds, and then I'll meet with my endocrinologist to discuss how my body is soaking up insulin like a sponge.  Just a few more months until she's here, in our house, in our arms.

Baby girl, I hope you know how loved you are.

(This is part of a gift from my friend Lindsay, who I've never actually met in person, but I feel like I know, though emails and Facebook and blogging.  Thank you again, Lindsay, for such a thoughtful gift!  BSparl says thanks, too, only I can't really hear here because she's muffled by my enormous uterus.  And potentially the sound of the oven *ding* as her cookies bake.  Who knows?)

Posted by Kerri Sparling at 09:58 AM | Permalink | Comments (19)

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 Sparling at 10:15 AM | Permalink | Comments (19)

(Great song.)

Now that we're back from our trip, it's time to reintroduce myself to the "swing of things."  While we were away, Chris and I were up late, eating fancy food at fancy restaurants (including desserts and carb-fantastic sweet potato french fries and gelato ... things we wouldn't normally eat but we devoured in spades - and in our mouths - all week long during the festival holy run on sentence), going to bed at 3:30 in the morning, battling the frigging hills, and waking up the next day only to do it again.  For nine days running.

It was exhausting. 

But now we are home.  And in the comfort of my own schedule, I can wake up early, eat a breakfast that doesn't include sausage (not the cat), get enough sleep at night, put my feet up as necessary, and get some exercise in.

Oh, the exercise part.  How you plague me.

I used to be awesome at getting to the gym.  Not to toot my own horn - more to toot Chris's, actually - but his dedication to the gym helped me keep my proverbial (and literal) butt in gear.  It was just part of our routine, and it was easy.  And the benefits were tremendous:  good health, pants that fit, and that feeling of "ooh, I'm sort of strongish."

But now?  As the baby belly grows and my sense of balance leaves the building for the next 75 days?  Exercise is hard.  Wicked hard.

Since we've been home, I've been back at the gym with Chris, only the workouts I'm doing now feel completely lazy-ass, compared to the ones I was doing before.  No weights (thank you, retinopathy), no jumping rope (thank you, bouncy belly), and no increased heart rate over 130.  

So I walk.  For like 40 minutes on the treadmill, without an incline and at a speed of only 3.0 miles per hour.  On paper (screen?) that looks wussy, but in reality, it's kicking my behind.  I'm not sure if it's the weight I've put on in the front or the fact that my lungs are squished in there, or maybe just because my whole body is completely different now than it was seven months ago, but just walking on the treadmill is a challenge these days.

I'm going to see how long I can keep exercising.  I've heard that many pregnant women make it to the day before they give birth, and I've also heard that the more active I can remain, the better my recovery will be after having the little baby.  Activity helps keep BSparl healthier, too, which is even more incentive to keep plodding.

Weird thing is, my blood sugars don't drop during exercise anymore.  In fact, they seem to go up a little bit.  Before becoming pregnant, I would disconnect my pump and exercise without insulin, but now I need to leave it attached.  And I sometimes need to bolus during the workout, depending on how the Dexcom is trending.  It's very odd, what my hormones are doing to my blood sugars these days.  I also had to increase part of my wee hours of the morning basal today, after two mornings in a row of waking up at 150 mg/dl.

"Kerri, you're rambling.  You realize that, right?  You're just rambling on about exercise and blood sugars and do you actually have a point with this post?"

Why thank you, Internal Motivational Speaker.  I appreciate you bothering me.  Yes, I'm rambling, but I'm just trying to get all these thoughts out before I lose them.  Which seems to be the case lately.

"Why don't you just tell them that the real reason you're fixated on exercise this week is because when you came home from Sundance, each cat had gained 5 pounds?  Now you have a trio of porkchops racing around the apartment?  Why don't you admit that Siah can't even fit under the couch anymore because she's too darn fat?"

Sigh.  I need to get back into the exercise groove. 

And apparently so do my cats.

Posted by Kerri Sparling at 11:21 AM | Permalink | Comments (17)

Park City is an old mining town nestled among the Wasatch Range of the Rocky Mountains, and aside from buzzing with Sundance excitement and brimming with film-goers and celebrities, let me just say that the damn place is not flat.  Not even close to flat.  (See also:  built amongst the mountains)  The majority of the "stuff to do" is on Main Street, and I'm pretty sure that street is a 60 degree angle.

BSparl and her mommy (me), in all their frontal weight gain glory, were not amused.

Something about walking up and down (and usually up and down a few more times) that street had me more winded than if I'd tried to run a mile on the treadmill at a 6.0 incline.  I know that the air is thinner in that part of the country, being so freaking high above sea level, and I also know that having a little baby girl growing inside of me is compromising the room for my lungs to expand.  But I had not anticipated how hard it was going to be just to WALK around in Park City.  We'd take the bus from our condo down by the Yarrow Hotel and get dropped off at the city transit center, and then the huffing and puffing would begin.

"I'm ... sorry ... for ... not ... keeping up."  I'd pant with each step as I tried to keep up with Chris.

"It's okay, baby.  We'll go slow.  We're not in any rush."

"Awe ... some.  Hang on while I lean against this lightpole for a minute ... and let my lungs ... do stuff."

(Thing was, we were late for two different dinner appointments because I couldn't catch my breath about 15 minutes into the walk.  I've never felt more awkward, or more yeti-like, than I did trying to plod up Main Street.)

Overall, little BSparl was a well-behaved fetus, doing her job of kicking and sleeping and rolling around in there.  I'm officially sporting a major baby belly, complete with visible baby movements even through my shirts.  And thankfully, my basals didn't need any adjusting while we were away.  I don't know if it was the time change or all the walking around or maybe it was just the grace of the diabetes gods, cutting me some freaking slack for the week, but my numbers ran relatively stable while we were away.  (Save for that f'ing 300 that came up as a result of overtreating two 48 mg/dl's in a row, pissing me off royally and causing me to have to skip dinner one night.)  I changed my infusion sets every three days like clockwork - mainly because I'm now using about 50u of insulin a day and that's the shelflife of one pump cartridge and also because sets left in too long are starting to get infected faster than usual - and I tested about 18 times a day.  In addition to Dexcom'ing. 

I may have left a trail of test strips on that there Main Street.

BSparl is proud of her daddy.  When I was trying to coax her into kicking at times, all it would take is a quick "Hi baby!" from Chris to get her scooting around in there.  And during the five screenings of Buried, she danced in celebration for her father's success.  I believe I may be building a "daddy's little girl" in there, and I think they're respectively smitten with one another. 

Traveling at almost seven months pregnant was definitely a challenge, and I'm not sure I would have done it, were it not such a big freaking deal to go to Sundance.  Heparin before the plane ride was one thing (that shit stings going in, FYI), and not being able to lift my suitcase wasn't exactly heartbreaking, but moving around was a little awkward.  And having to pee every 30 minutes was also cumbersome.  (I know where EVERY bathroom is in Park City.  Thank you, BSparl, for making my bladder your pillow all week long.) 

But I wouldn't have missed this for the world.

Posted by Kerri Sparling at 08:14 AM | Permalink | Comments (13)

(I've bombarded you guys with info on Buried and kept a running update on Facebook and Twitter, so I promise this will be the last post about Sundance. I'll go back to diabetes crap in a few minutes.  Or at least I'll blend them.)

We're back from Park City, and the whole Sundance experience was completely and utterly surreal.  I won't go on about the reviews that have come out about the film (i.e. New York Times, LA Times, Variety, Moveline, Slashfilm, Film School Rejects), and I have no plans to talk extensively about the Lionsgate purchase (holy crap).  But we were at the premiere of Buried at the Library Theater on Saturday, January 24th, and it was incredible.

After a private pre-screening dinner (where there was a special "Buried" menu on tap - very cool), we headed off to the theater for the actual screening.  The film premiered at midnight, and it was something else.  Chris's (in my humble, wife-ish opinion) fantastic script was brought to life by Rodrigo's immense directorial talent, and Ryan's performance was emotional and real.  I don't want to ruin the story for anyone who is planning to see the movie (you are ALL planning to see the movie, right?), so suffice to say that the film was incredible.  I applauded wildly, and BSparl did the same from underneath my belly button.  (She's a big fan of her daddy's movie.  Man, that is bizarre to write.  Two and a half more months!  /diatribe)

So many friends and family members came out for the festival (including the majority of Chris's extended family and also my father), so the house was packed.  Chris, director Rodrigo Cortes, and star of the film, Ryan Reynolds were all in attendance, adding some extra excitement to the room.  This was the first time that anyone outside of the production team was seeing the film, so the air was electric.  And since this was our first look at the finished film, we could hardly sit still.  I found myself particularly fidgety during certain moments of the movie - you'll know when you see it.

Writer Chris Sparling, director Rodrigo Cortes, and actor Ryan Reynolds

And it was over.  Ninety four breathless minutes later.  The audience sat back from the edges of their seats - literally - and then there was a Q&A with Ryan, Rodrigo, and Chris, where the audience peppered the trio with questions about the film. (Some video coming soon, once we figure out which suitcase the Flip ended up in.)

Buried screened a total of five times at the festival, and the responses from viewers has been overwhelmingly positive.  I mean, these three guys pulled it off.  A movie, taking place entirely in a coffin with one actor, was interesting.  For over an hour and a half.  That's pretty damn impressive.  ... but I'm not doing a movie review here.  Obviously my bias is impossible to contain. ("Most impressive script EVER!"  "Cutest writer of all TIME!!"  "Framing the movie poster and debating putting it in the baby's NURSERY!") 

I am so proud, as his wife, to have been there to support Chris as he made this huge career leap forward.  But I was proud before, when there wasn't a Sundance movie to talk about or a movie premiere to attend.  He's my best friend, and I'm so, so happy for him.

Now I need to upload a pile of photos and make sense of the suitcases that still need unpacking.  And find out why Siah is curled up around the toaster, purring maniacally.

Posted by Kerri Sparling at 10:40 AM | Permalink | Comments (22)

Thanks to the happy combination of Factor V Leiden and being pregnant, I'm rocking a higher chance than average for a blood clot while traveling.  Back in October, when I was just a few months along, a lot of my travel was on the Acela, cruising back and forth between Boston and Philly, in addition to some flights.  So I needed to take these clotting risks into account.

"You're telling me I should pick up some compression stockings, then?"  I asked my obstetrician, after we had discussed my upcoming travel plans.

"Yes ma'am.  And wear them.  Not just for traveling, but as often as you can."

"Will do.  So I'll be potbellied and wearing compression stockings.  Hot!"

My feeble attempts at joking aside, these stockings are important.  Even though I'm working hard to get to the gym several times a week, I'm more definitively working hard on making money, so there's a bit too much time spent at the computer these days.  Heeding the advice of my doctors, I'm careful to keep my legs elevated as much as possible, and I'm sure to pop up and walk around every hour or so, in addition to staying hydrated.  (Note:  Staying hydrated makes getting up every hour easier, especially when BSparl is gnawing on my bladder.)  

And I'm also sporting these socks, purchased for $4.99 at my local CVS.  (Another note:  CVS takes too much of my money on a regular basis, from their clever selection of lip glosses - love me some Bonnie Bell - to their strategic arrangement of Hallmark greeting cards to their convenient pharmacy that's open 24 hours.  I have an intense love/hate relationship with CVS, as evidenced by their constant contact with my debit card.)  The socks aren't uncomfortable, they appear to be working well (no varicose veins yet), and they are black, so thankfully they go with my go-to flats of choice these days.  I'm safe, BSparl is safe, and CVS is safe because they will continue to get my money.

So what's sexier than compression stockings?

Nothing.

Because without these blasted old lady leg warmers, I'd be risking a blood clot and varicose veins, thank you very much.

Posted by Kerri Sparling at 10:23 AM | Permalink | Comments (13)

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 Sparling at 08:21 AM | Permalink | Comments (19)

Last Friday, Chris and I were back up at the hospital for another round of doctor's appointments to spy on Ms. BSparl.  (This might be another long post, because I'm trying to include everything we're doing for this pregnancy, just in case someone else is looking for this info.  So thanks for bearing with me!)

Fetal Echocardiogram No. 2:  We started with a follow-up echocardiogram appointment at Children's Hospital in Boston, because last time we tried to see the structures of our little girl's heart, she was hiding out too low in her little uterine apartment to be properly found. This time, a full month later, she's over a pound and a half, and the size of an eggplant.  So hiding is a little harder.

The babies of type 1 diabetics aren't prone to every kind of complication, but are instead screened for everything under the sun, just to make sure.  The ultrasound technicians were looking for problems with BSparl's heart - ranging from a floppy valve to flow problems between the atria and ventricles, checking out the umbilical cord blood flow, too.  

"She not much of a cooperator, is she?"  the technician asked, pressing the ultrasound wand firmly against the left side of my uterus. 

"I guess not.  Bit of a shy one." 

(I love this kid already!! /sidenote)

"Well she can run, but she can't hide.  We're going to get these pictures today, whether she likes it or not."

The technician visually isolated BSparl's beating heart, looking at every chamber and pulse to make sure she was in one piece.  But as the technician worked to get the ultrasound images she needed, she was pressing pretty damn hard against me ... and against BSparl.

"Almost done.  Just one more image to capture.  You doing okay, Kerri?"

"No problem.  But I think our friend here is ... ooof!  Um, she's not very happy with you."

And when I looked down, I could see the baby kicking and fussing on my right side as the technician pressed the wand against my left.  Big kicks, clearly visible to Chris, who was sitting in a chair on my left.  BSparl was pissed - she didn't enjoy being bothered while she was trying to sleep during the day, apparently.

'Fiesty one, eh?"

I felt a little proud.

"Yes, she is."

(I guess if you poke at my kid, she fights back.  I like that.) 

The fetal echocardiogram came back without any red flags, so thankfully her little heart seems to be okay in there. 

"Looks like she's about one pound, 12 oz.  She's right on track, so nothing to worry about with her size at this point."

I was relieved.  "I'm glad you're saying that, because I've had some really tough blood sugars these past 2 1/2 weeks.  I was afraid she was beefing up in there."

"No, she's in the 61st percentile, and we aren't going to worry about anything until she's in the 75th.  We're going to watch you to make sure she doesn't get too, too big in there, but at this point, she's doing just fine.  And so are you."

She printed some ultrasound photos for us (which will go into the baby scrapbook I've started but definitely need to catch up on) and then I met with my endocrinologist about my blood sugars.

Endocrinologist:  I am very, very thankful that I have a comfortable relationship with my endocrinologist, because the emotional toll of diabetes has really affected my ability enjoy being pregnant.  I've had some highs that wouldn't go away, and plenty of unexplained blood sugars that have made me feel so frustrated over the last few weeks.  I'm pretty sure my A1C will be up again this month (hopefully still under 6.5%) but I needed help fixing some of it.  And I also needed to be told that what's happening to me is normal.

"I'm high.  Like, crazy high, sometimes first thing in the morning.  And other times, I can't make my post-prandials come down under 160 mg/dl for at least two hours, no matter what I do.  Is this normal?  Is it normal for me to be experiencing such wild insulin increases at this point?  And is it normal for me to be sort of losing my mind at this part in the pregnancy, too?"

She assured me that this is the point in pregnancy when the placenta does, in fact, produce anti-insulin hormones, causing my numbers to elevates and my need for more insulin.  

"Anti-insulin hormones?  That's cruel.  Cruel irony."

She smiled as she worked to adjust my basal rates (now up to almost 20 full units of Humalog per day, in addition to bumping my insulin to carb ratio down to 1:8).  

"You're doing fine.  And you've been adjusting your own basals and going after these highs, so that's the right thing to do.  We just don't want you chasing.  I want to help prevent them in the first place."

I could have hugged her.

"Me, too.  I want to make sure she's safe in there.  I don't want to hurt her in any way, and the recent highs have me freaking out a lot."

"Don't freak out.  Just keep doing what you're doing.  Follow those numbers, stay as controlled as you can, and fax me any blood sugars that have you concerned.  I can review the changes you're making, or I can make changes for you from here.  Either way, we'll get her out just fine."

Building this baby is tough work, and these days, I feel like a full-time diabetic.  This baby, and by default, diabetes management, is my top priority and I am focused on keeping her as safe as I can.  But as my body changes and my insulin needs become less and less predictable, it's getting tougher to stay in good control.  And in solid spirits.

We're almost at the end of the second trimester.  Third trimester starts on February 8th, and after that, it's a fast track towards her arrival.  This is happening really fast.  We actually started registering for baby stuff this past weekend - holy crap.  Emotionally, I'm overwhelmed and excited and scared and trying to figure out how to just slow things down for even a day.

(More on that tomorrow, once I wrap my head around the whole concept.  For now, I need to go make some pancakes.)

Posted by Kerri Sparling at 08:06 AM | Permalink | Comments (12)

We're just over 23 1/2 weeks with Ms. BSparl, and she's an active little biscuit in there.  I know I mentioned it in my vlog earlier this week, but this baby is scooting around all over the place inside of me.  Last night, for the first time, Chris and I could actually SEE her kicking from the outside.  Feeling her kick is one thing, but seeing it?  Completely amazing.  When she shuttles and rolls from one side of my uterus to the other, I can see her moving.  My belly swells more on one side, and then I can feel and see the 'bulge' move over to the other side.  (I'm trying to get a video of her doing this, but usually when it happens, I'm too taken by surprised to grab the Flip!)

On the diabetes front, my insulin resistance is climbing.  Daily.  Like a cat in a tree, howling from the top branch and refusing to come down.  (I need the fire department - stat!)  My basals, once at a conservative 12.4u today per day, are at an even 20u per day and I'm sure they'll need to be upped again sometime next week.  I feel like I'm chasing my tail right now with these blood sugars, but so long as I can continue to effectively stalk them, I'm confident that I'm not boiling BSparl.  This morning, after three days of waking up at 140, 155, and 203 (gah), respectively, my fasting number was 79 mg/dl and the Dexcom reflected a steady overnight, too. I'll take that, and hope it happens again tomorrow. 

But if it doesn't?  CRANK it up again!

A big hurdle I'm encountering is the exercise bit.  Honestly, I haven't had a good workout since before we went to Spain (and returned with Ms. BSparl).  In the first trimester, I was usually too exhausted to get to the gym (went three times a week instead of the five I was getting in before), and then we moved out of our apartment in Connecticut, so that whole transition sucked out my desire to work out almost entirely. 

Now, well into the second trimester, I'm trying to get to the gym but it's just so boring.  My exercise options feel so limited, and I'm not used to the whole "get on the treadmill, walk steadily for 35 minutes, END" routine.  No ab workouts, or I could smoosh BSparl.  No jumping rope, or all these new sticky-outtie parts of my body might leap off of me and my pelvic floor could be weaked.  (Kidding on the body parts leaping off but true on the pelvic floor concerns. I also can't imagine jumping rope being almost 6 months pregnant, nevermind the fact that the kid won't like it.)  And no strenuous weight lifting, thanks to compromised diabetic eyes. Those little five pound weights I have are borderline questionable, considering my retinopathy progression.  Booooooo.

So the treadmill it is, for long and awkward ambling.  (For now.)  And even though it's a whole lot of boring (I've watched that "build a six foot gingerbread house in 8 hours" challenge on the food network like seven times now), it is getting harder and harder to keep moving.  With BSparl expanding every week, my organs are getting a little smushed in there.  An expanding uterus puts pressure on my bladder, my diaphragm, and every other organ I have in there, leaving me short of breath a lot of the time and generally feeling like I'm going to tip over a little bit.  I guess these walking workouts are still exercise, even though they aren't even close to what I was doing before BSparl's creation.  

Every week is different, but I'm definitely not complaining.  Pretty damn grateful, actually.  I'm so happy to look in the mirror and see that my waistline has all but disappeared and has been replaced by this bump o' BSparl.  She's in there, she's doing well, and in just about four months, she'll be here.  

Posted by Kerri Sparling at 11:04 AM | Permalink | Comments (26)

Back at the Diabetes 2.0 conference in Florida in November, I was talking to Manny Hernandez about how evenly  my numbers were running due to the pregnancy.

"Dude, it's like a cure.  It's creeping me right out, but I am NOT complaining.  Whatever keeps this baby safest!"

Oh how I wish that was still the case.

The lows chased me all around the house for about five months, helping my A1C drop like a rock and keeping highs out of the rotation for approximately twenty weeks.  A blood sugar of 150 mg/dl felt HIGH (which was a far cry from the 250's I was sadly bonding with this time last year) and my low symptoms weren't kicking in at all (see also:  the 29 mg/dl without a whisper of a hint). 

Tomorrow I'll be in the 23rd week of my pregnancy, and the highs are back.  With a freaking vengeance. 

It started innocently enough - with some spiky numbers in the middle of the night.  Nothing chaotic, but 120's where there were 80's the day before, and they continued to climb a bit every day.  For about four days straight, I was waking up at 4:30 in the morning between 120 - 140 mg/dl, correcting back down to 100 mg/dl, and then the creeping would start again around 10 am.  It was like my body wanted to incubate BSparl at a steady blood sugar of ... 180?  NO WAY. 

After a quick chat with my endocrinologist (who told me, in no uncertain terms:  "Pregnancy is completely different.  Two days is a pattern now.  You know what you're doing - adjust your basals as often as needed."), I starting hiking up my basal rates.  Before I got pregnant, my total daily dosage was around 24u per day, thanks to a low basal rate and a lower-carbohydrate diet.  Now?  Five months and 3 weeks into my pregnancy and 17 lbs heavier?  My TDD is 45u and climbing. 

I am wearing my Dexcom and testing very regularly, but it seems like full-out stalking is necessary for the next four months.  I'm also changing my insulin pump infusion set every three days, like clockwork, to keep absorption issues from adding to the pile of variables.  What's becoming challenging is avoiding basal stacking.  As in, if I'm 140 mg/dl and I bolus it down, I need to be patient and let the insulin do its work.  I can't freak out and take another bolus 35 minutes later just because I'm nervous.  Bolus stacking (and rage bolusing, too) are totally counterproductive when they result in a nasty low blood sugar that leaves me spinning.

So what's the moral of this story?  ... honestly, I have no idea.  All I know is that blood sugar management during pregnancy just went from literal cakewalk (as in, I'd take a step and would require cake to take another step) to a struggle that has me acting like an emotional wreck.  My last A1C came in a little higher than the one the month before (went from 6.1% back up to 6.3%), and I know this is because the lows are tapering.  But I don't want to crest back up towards 7% because I'm unable to wrangle in these stupid highs.  

There's a lot of guilt when it comes to diabetes.  I knew that before.  But what I didn't realize before becoming pregnant is how much I worry about this little baby while she's growing inside of me.  Every time I test and see a number above 130 mg/dl, I feel so sad and frustrated.  My hands immediately go to my belly and I want to feel her kicking, because that at least soothes my heart, knowing she's still okay in there.

Actually, she's rolling around in there as I type this.  My blood sugar is 96 mg/dl and holding, I hope.  I have every confidence that I can do this and that she and I will be okay, but these last few days have been really emotionally tough, and I've found myself praying more now than I ever have before.

(Thank goodness for cute baby girl clip art.)

Posted by Kerri Sparling at 11:49 AM | Permalink | Comments (22)

Dear Baby,

Daddy and I are at the halfway point in our journey to meeting you, and I'll admit - I'm a little surprised at how quickly this is happening.  I feel like I was just in Spain, hoping you were there with us, and then just at Joslin, wondering if they were going to tell us you were indeed hidden inside of me.

Baby, we know you are a little girl, and that every week, different parts of you progress in their development.  Daddy and I read through those books we bought and marvel at what's actually happening inside, when my outside just looks bulgy.  "She can hear us now!"  "She'll start kicking any day."  "Will we catch her sucking her thumb in the next ultrasound?" "Does she realize I don't know the lyrics to ANY songs, not even Christmas ones?"

And I've felt pretty healthy, Baby.  I am about 13 lbs heavier and wearing maternity clothes now (you'll see them when you're born - the crazy pants with the elastic waist bands that everyone was jealous of at Thanksgiving?), but a lot of the "pregnancy woes" aren't part of our lives yet.  Like heartburn.  And stretch marks (yet).  Just some back pain and I feel pretty tired a lot of the time.  Heating pads and naps work wonders these days. 

But Baby, I get very nervous about things that other people don't know about.  The stuff that isn't mentioned on the "What to Expect" websites.  We visit the doctor every two weeks, and I'm being followed very closely by my medical team, but sometimes my mind gets panicked about how capable my body is of taking the best care of you.  I can't lie - I know that diabetic women have healthy babies all the time, but Baby, when my blood sugars ring in at 200 mg/dl after a meal, no matter how carefully I've counted carbs and bolused insulin, I'm terrified that I'm hurting you.  Or this morning, when I woke up at 135 mg/dl at 7 am, I felt a pit in my stomach because I know that it's best for me to be under 100 mg/dl first thing.   I wonder, when the infusion set really stung yesterday morning upon inserting it, do you feel that pain?  Is it normal to worry about every little thing when it comes to your well-being?

Of course it is, moms and dads who have done this before will tell me.  It's completely normal for me to want the very best for you and to hope and pray for your good health and safety.  And it's also completely normal for me to worry about every little thing.  But what I worry most about are the things I am scared to talk about.  The things like blood sugars and hypertension and diabetes-related complications for you and I alike, that other people in my life think I have figured out but I just don't know how to do it right every day.  And the idea of doing it "wrong" makes my breath catch in my throat.  My numbers seem "good enough" and my A1C is lower than it's ever been, but those 200's that are creeping back in at at times terrify me.  So does the 31 mg/dl in the middle of the night.  And so does every single thing that threatens to affect you in any way.  Will I keep you safe enough? 

Diabetes is the shifting sand I'm trying to build my life on, and I can handle my being affected, but I don't want it to touch you.  Not even for a moment.

I love you endlessly, Baby.  I'm so grateful to even be this far, and I appreciate every moment I have with you, and will have with you in the future.  Don't worry, Baby.  I'm not spending every minute of our pregnancy in a panic.  It's just sometimes I feel so scared that I'm not able to provide to you everything that you deserve.  I'm very protective of you already, and I want to be a good mom to you.  When I feel you kicking around inside of me, I know you are exactly what I've always wanted.  You are a new life that your father and I created together, and I hope that I can give to you even an ounce of the joy you've already given to me in the last five months. 

I can't wait to meet you, and hold you, and know that you're okay.

Love,
Your Mommy

Posted by Kerri Sparling at 10:42 AM | Permalink | Comments (20)

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

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 Sparling at 11:29 AM | Permalink

Last week, on Twitter, Elizabeth Arnold posted a link to a photo that made my whole body cringe and I instinctively said, "Oh crap, THAT thing?" (I'm stealing and reposting this photo here, but the original photo credit belongs to Cardinal Health.) 

Behold - The Guillotine:

This photo made me shudder because I remember this lancing device clearly.  It was the first one I ever used, outside of having my finger pricked by the nurses with the lancet alone, and I remember the shunk sound it made as it came careening towards my fingertip.  It wasn't the standard shunk we know now - this sucker would have to be cocked back like a rifle, and once it clicked loudly into place, you had to hit that button on the back to release the spring-loaded lancet.  And it wasn't just spring-loaded - The Guillotine had an agenda.  It would come screaming over the top of the curve and embed itself into your fingertip, and it was all my mother could do to keep my hand pressed against that little plastic circle at the bottom there. 

I hated it.  It scared the crap out of me, and even though more humane lancing devices were introduced soon after my diagnosis, The Guillotine lived in our house much longer than I'd care to admit.  Even the lancets looked like little harpoons. 

Back in 1986, diabetes technology wasn't completely archaic (I was dx'd after disposable syringes were used, and way after pumps were the size of backpacks), but it wasn't comfortable in the slightest for a second grader.  That Guillotine still makes me cringe, even 23 years later, and I'm increasingly thankful for every little advancement we've seen over the last two decades.  

Because I mean, really.  Look at that thing.  OUCH!!

Posted by Kerri Sparling at 09:06 AM | Permalink | Comments (44)

Tomorrow is World Diabetes Day.  While my best friend's baby shower is this weekend and I'll be busy preparing for and helping with that event, I know there are lots of events taking place to celebrate the big, blue circle (including the Big Blue Test ... more on that later).

But today is just another day in diabetes management, and it happens to be another endocrinologist appointment for me and the ol' BSparl.  BSparl is getting bigger, as evidenced here:

I am now sporting my first baby bump, and it's becoming more and more pronounced every day.  (Pronounced baaabeee buuuhmp.)  Clothes don't fit, maternity jeans are necessary, and when I zip up my sweatshirt to head down to the gym, the zipper strains a bit over my belly. 

But is it all baby?  Or could it be some weight from treating all these lows?

One of the things I'm talking to my endocrinologist about today is low blood sugar.  Specifically, the crazy-ass low blood sugars I've been experiencing over the last four months.  The other night, I woke up to the BEEEEEEP! of the Dexcom and a pool of sweat in my clavicle.  Blood sugar was 33 mg/dl, and I wasn't even entertained by the Larry Bird reference. 

Instead, aside from the sweat, I was completely symptom free.  And that scares the hell out of me, because there have been several lows in the last few weeks that clocked in under 50 mg/dl without a single symptom.  Last week, it was a 29 mg/dl that just sprang up on me, and even yesterday I had a 41 mg/dl with my only symptom as thirst.

THIRST?  That is my low symptom now?  Come on, diabetes.  That doesn't even make any sense!!

In preparation for my Joslin appointment today, I have two weeks worth of blood sugars all logged and ready to roll, and as I was printing out the logbooks, I noticed that there isn't a single trend.  These lows are cropping up at 3 am, 10 am, 4 in the afternoon, while I shower, while I'm at the grocery store, during conference calls ... you name it.  No reason for these pesky lows (and also no reason why I shouldn't just buy stock in glucose tabs, seeing as how I've wrecked through a bottle in the last week alone).  Plenty of other type 1 diabetic women who have been pregnant have told me about the epic low blood sugars they've experienced, but I had no idea what they meant until the 20's and 30's started pestering me at all hours of the day.

I have high hopes that my endo can help me peel back some of these lows without sacrificing the excellent post-prandials that I've been working my butt off to achieve.  I'm willing to let my A1C creep up a bit in order to bring my machine average back up into the triple digits.  I just need some help in making these lows stop.

(I also have high hopes that I can stop sleeping with a bottle of honey next to my bed, because when I slap my hand against that instead of the alarm clock, it's all sticky.)

Posted by Kerri Sparling at 11:04 AM | Permalink | Comments (16)

The second trimester (not semester, as I keep mistakenly saying) is in full swing.  According to the baby books I am reading daily, it's time to start putting on 1/2 a pound to a pound a week - oh what a weird concept!!!  For those of you who have been reading me for a few years, you know I work hard to keep the poundage OFF, so the concept of gleefully adding 20lbs in the next 22 weeks is foreign to me.

The weight gain is a weird adjustment.  I log in to the What to Expect (When You're Expecting) site daily to see the progress of the BSparl and because it helps me keep track of how far along I actually am.  I'm now in the 16th week of my pregnancy and the site says the following:

"It's hard to watch yourself gain weight during pregnancy, even when you know there's a wonderful reason for it. The challenge, though, is to try to embrace your body's new shape and think of every pound you put on as a sign of good health for you and your baby. As long as you eat right during pregnancy (minimize junk and maximize nutrient-dense foods) and get regular exercise, you'll be fine in the long run. Remember, every woman is different and gains (and loses) at her own pace."

Eating right has been a little bit of a challenge because what I'm craving is changing hour to hour, it seems.  Earlier in my pregnancy, I could have devoured an entire fruit stand in a week, craving anything with a high volume of vitamin C in it.  Kiwis, orange juice (yes, with pulp!), blackberries, and raspberries by the fistful.  Healthy choices, right?  But now, with about 7 lbs on board already and closing in on the fourth month of BSparl, my tastes are turning towards less ... diabetes friendly options, shall we say.

Like the other night.

"I want a McDonald's cheeseburger, like you read about."  I said this to Chris from the safety of our home, away from the tempting glow of any golden arches. 

"Really??"  He knows I'm not one for fast food, especially McDonald's. 

"Yup.  It's twisted."

The thing about that craving is that it didn't go away.  No sir ... that one was on board for 72 hours, until Monday, when Chris and I were coming back from an errand and I knew there was a McDonald's around the corner.

"Dude, I'm caving."

He grinned.  (He finds this whole thing amusing, from the potbelly to the bizarre things I want to eat now.)  "It's time."

While he waited in the car, I ran into McDonald's and ordered a cheeseburger from the lady behind the counter.  

"One cheeseburger, please!"  I think I looked euphoric.  I must have.

"One cheeseburger, happy lady?"  

"Yes, ma'am!"

"One cheeseburger for the happy lady!" she said, punching the order into her register and calling back to the guys in the back.

"Cheeseburger coming up!"  A minute later, the cheeseburger I'd been craving slid down the counter and was tossed into a paper bag. 

"Cheeseburger for the happy lady!"

"Thank you!"  (Everyone speaks in exclamation points at this McDonald's, apparently.  And there's nothing wrong with being the "happy lady," in my opinion.)

I went out to the car, my face glowing with pregnancy cheeseburger happiness.  Chris was already laughing at me, but I can't care.  This is part of the process, I guess, all this very odd food stuff.  I bolused 3.5 units for this culinary disaster and ate it in one gulp.  An hour later, 109 mg/dl. 

I swear BSparl was in there, clapping his little hands, the whole time. 

Posted by Kerri Sparling at 10:08 AM | Permalink | Comments (25)

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 Sparling at 11:39 AM | Permalink | Comments (38)

Posted by Kerri Sparling at 11:25 AM | Permalink | Comments (32)

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

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

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

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

“Okay, what’s the difference?”

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

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

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

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

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

Posted by Kerri Sparling at 07:50 AM | Permalink | Comments (24)

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

I know. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted by Kerri Sparling at 08:03 AM | Permalink | Comments (43)

... 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 Sparling at 11:30 AM | Permalink | Comments (72)

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 Sparling at 10:25 AM | Permalink | Comments (12)