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August 31, 2011

From Abby: Casually Defective.

It's not just our pancreases that are busted at times - there are often moments of diabetes techno-burps that leave us scratching our heads.  Abby recently had a "WT ...H" moment with her insulin pump.  And she also experimented with word smashing; you'll see. 

*   *   *

Abby Bayer, who is moving today, so wish her good luck as she shuttles all her crap to New England.  :)Since I got home from camp, my lifestyle is much more ... umm ... sedentary (read: I sit in my room unpacking all day, just to repack in a week).  This is a big change from my lifestyle at camp in which I was walking everywhere all the time.  So when I was having a lot of persistent high blood sugars, I chalked it up to this change in activity (and cranked up the basals).

When I woke up at 3:30 am on Wednesday night to my Dexcom annoying the crap out of me (saying I was 329 mg/dL with two up arrows), and I was feeling like absolute death, I decided to check for ketones. This is where the story gets complicated. After seeing that I had smoderate ketones (yes, I’m allowed to smash the words small and moderate together), I looked at my site. Total vampire cannula. I ripped that thing out and found a huge bruise. Great.

Here comes the strangest part ...

Since I use Mios, it’s just easier/safer to change the whole setup when having cannula issues.  (With a Medtronic Revel and Mios, I’m so pump trendy.)  When I took the reservoir out of my pump, it literally dripped insulin all over my bed. And the little place where the reservoir lives in my pump was FILLED with insulin, with like at least ¼ of an inch in there. I soaked up two Q-tips to get it out.

What. The. Heck.

I was a little concerned about my pump, since it’s not waterproof, and it’s brand new (I just got this upgrade in May), but at 3 am I was far more sleepy and ketone-sick than concerned.  I called Medtronic the next morning and the customer service person basically told me I had a defective reservoir and hit a weird spot in my arm which lead to the blood (I was expecting a scolding for using my arm, but she was fine with that – thankfully).

This is my old Minimed pump, not Abby's, but I figured a visual representation of the pump would be all "Ahhh!"

But she thought this was a totally acceptable reason - "Defective products are pretty common." In this woman’s defense, she went through all the steps she could to make sure my pump was okay. But a lot of the expectations don't really apply to "real life." For example, "Please find the lot number on the package from the pump site and reservoir."  Maybe I’m the only one, but I throw all that junk away as soon as I put the new site in. And I also dump out all of my pump supplies in a drawer when I get them because the boxes and all the paper inside takes up way too much space.  So finding those lot numbers?  Not going to happen.

I love me some technical support, but sometimes I wish the people on the other end of the phone had diabetes and were a bit more sympathetic as to how that casually defective reservoir made me feel. She kept telling me “I’m very sorry this happened to you, we can replace those products right away” which is helpful, I suppose.  I guess I just want someone on the phone to be like "Aww that is awful, I totally know how having ketones feels, and it’s no good at all."  So I guess what I’m saying is life would be easier if everyone in the world had diabetes :)

(I’m totally not dissing on Medtronic. I get that it’s not their fault if one reservoir doesn’t work. And they’re always super nice and super helpful ... it’s just frustrating when things that keep us alive are allowed to be faulty. See also: Kerri’s meter discrepancy extravaganza.)

In the end, pumpy is fine. Since there are no cracks or anything in it, and apparently because when I shake it, it doesn’t make a sound (yet another test the tech support girl had me do) my pump is safe.  She told me to keep an eye on it, and call back with more problems. Crisis mostly averted.

*   *   *

As someone who recently cracked their Animas Ping against the floor and had to rock MDI due to my awkward pump failure, I totally understand the need for people to understand the "real life" implications of pump failure.  Have you ever busted up a bit of your diabetes technology and had to reset your management plan?

August 30, 2011

Flourless Chocolate Cake ... with Nutella.

In keeping with the "all I can cook are things I shouldn't eat" theme, I made a flourless chocolate cake with Nutella for my mother-in-law's birthday party.  Chocolate-y goodness AND gluten-free!

The recipe is from this fantastic site that has wonderful editorial and pictures, but I'll be damned if the ingredients aren't measured in grams, making my almost-comatose inner mathematician completely unresponsive.  But I did it, and if I can do it, so can you. 

Flourless chocolate cake ... with Nutella.  The only thing missing is YOUR FORK.
Ingredients (and I apologize for the grams thing.  Just use a converter.  Or guess.)
Original recipe found here.
200g unsalted butter, cut into chunks
100g dark chocolate
200g Nutella
100g white sugar
6 eggs, separated
1 t. instant coffee or espresso powder
  • Preheat the oven to 350 degrees.
  • Retrieve the 9" springform pan from the Birdy, who is running around the kitchen, banging on it like it's a gong.  Dust the pan with a little bit of cocoa powder.
  • Take the sticks of butter and chop them into chunks.  Mix the butter and the chocolate chips on low heat on the stove until it's all melty and wonderful, but don't let it burn.  Even if the cat is picking at the frigging screen door.  Ignore the cat.  Stir the chocolate.
  • Remove the chocolate and butter from the burner and mix in the awesomesauce known as Nutella.  Once that mixture is fully blended, stir in the instant coffee and put aside.
  • Next, grab two bowls and separate six eggs.  If you have an egg separator, you're awesome.  If you're like me and you have to use the two sides of the broken shell to shuffle the yolk and the whites back and forth until they let each other go, I feel your pain.
  • In the bowl with the eggs yolks, add the granulated sugar and beat it senselessly. Then mix the chocolate/Nutella/butter together with the egg yolks.
  • In the bowl with the egg whites, use a handheld mixer to beat these things until they start to shape themselves into little, snowy peaks.  It looks pretty.
  • Toss the egg whites into the rest of the mixture and stir until it's well-blended.
  • Pour the mixture into the springform pan and stick it in the oven.  The recipe from the Misadventures in Italy site says to cook the cake for about 20 minutes, until the center is cooked, but a little "jiggly."  I needed to cook my cake for about 28 minutes, but that may have been because my kitchen is trying to thwart me in all ways.
  • Using your oven mitt that you drew eyes on a few minutes earlier, remove the pan from the oven.

    HELLOooooooo

  • Let the cake cool, fool, for about 20 minutes.  Don't be alarmed if it falls a little.  It will still taste terrific.
  • Dust with powdered sugar and smash it into your face, because it tastes that good.
Anything made with Nutella works for me.  But beware - this stuff is like insulin's Kryptonite.  ... or maybe that's just diabetes. 

August 29, 2011

Blouse or Bolus?


"No, I said BOLUS.  Not blouse!"

"I said 'bolus,' not 'blouse.'"

I have this conversation ten times a day with my spell check. 

August 26, 2011

Randoms.

It's one of those days when bullet points are the only way to get the thoughts out.  Otherwise, they tool around up in my head and make a mess of things. 
  • I feel guilty when I make an 8-cup pot of coffee, intending to drink about three cups of it and ice the rest, but then find myself having consumed the entire thing and willing the paint to peel off the walls just by using my powerfully-caffienated eyeballs.
  • How did CatDog use the bathroom? 
  • Siah nudged me awake this morning, like she was back to being a fluffy kitten.  All meow, meow, meow.  And it was cute, until she tried to stick her nose in my mouth.  That was a gross moment, and one I'm not looking to repeat.
  • In my efforts to clean up the backyard and prettify it, I've gotten myself a lovely case of poison ivy.  Itching is fun.  I love Calamine Lotion.  See also: never trust a big butt and a smile.
  • I'm embarrassed at the state of my inbox.
  • Fact:  I don't admit to the people on my conference calls that I'm usually talking to them from the swingset in my backyard.
  • Or that I'm in workout clothes but am not working out.
  • Or that I haven't showered yet.  
  • And sometimes I shower solely with the purpose of going to Dunkin Donuts and getting a coffee without scaring the employees.  This makes me question my priorities.
  • (For the record, my daughter is always clean and dressed.  I take good care of her.)
  • I reckon I hear there's a hurricane a-comin'.  This means that the good people of Rhode Island have bought every loaf of bread and quart of milk for miles.  Bread & Milk soup for all!! 
  • But in all seriousness, we did buy water.  Because hydration is super.
  • We finally saw the last Harry Potter movie last night.  (Going to the movies is hard when you have a baby and you don't have a live-in nanny who also folds laundry.  Or a nanny of any kind.)  I loved the book series so much, and the movies didn't disappoint.  Also, it was nice seeing Birdy's favorite wizard on-screen again.  ("Dumbledore, Dumbledore!")
  • I like watching Birdy on the video monitor, while she's napping.  I enjoy Bird-Watching.
  • This morning, my meter case spilled off the bedside table and no fewer than 3,477 dead test strips came tumbling out like confetti.  Now it looks like a diabetes New Year's Eve in my bedroom.
  • Few new Animas columns are up for August, including "Waterproof?" and "I See Blood Sugars." 
  • Should I be more, like, organized and schedule posts ahead of time?  Is it bad that my daily posts are whatever's top of mind for me?  Or should I have an editorial calendar that involves updates from Siah?  (Kidding.  Clearly Abby the Cat is the writer in this feline family.)Hurricane Bel Biv Divoe
Stay safe this weekend, New Englanders.  And if you truly are making French Toast with all that bread and milk (and eggs, if you have those lying around), call me.

August 25, 2011

Everybody Bloops.

Most of the time, when I record a vlog, the final product ends up being about three minutes long.  This is after cutting the video down from fifteen assorted minutes of nonsense and rambling.  And this blooper video is ... well, embracing the rambling.  :)

Diabetes bloopers was a theme from D-Blog Week back in May.  Everybody bloops.  Have you blooped today?

August 24, 2011

From Abby: Dexy Pictures.

Abby's been rocking the Dexcom for the last three months, and she's fully immersed in both the data mining and the photographing of said data mining.  Here's her "PWD photojournalist" take on Dexcom'ing and documenting. (Also, welcome back, Abby!  We missed you while you were at camp!)
*   *   *

I’ve had my Dexcom for almost three months now. While most of the time I hardly pay attention to it, sometimes I like to make a big deal out of certain graphs. I also had a habit of showing the really good and really bad graphs to people at camp this summer, and sometimes they took pictures of them. (Diabetes camp is a special kind of place, where we celebrate Dexcom graphs … it’s awesome.)

Anywho, here are a few of my favorites:


This was the closest I’ve come to a no-hitter and needed to show EVERYONE at a Tuesday dance at Camp Joslin. Normal. (Please ignore the gross shininess of my camp self.)


Then there was the time we went hiking and the combination of a 15g protein bar and a 75% temp basal kept me at a wonderful 140-150 mg/dL range the entire time.


I call this one "Dyslexy-Dexy," when I put a new Dexy sensor in and it was entirely confused about everything. My meter showed 117 mg/dL when this picture was taken.


This one is epic. I corrected after totally bombing a guess on pizza and ice cream (it was the day after I left camp, leave me alone) and then my correction factor worked BEAUTIFULLY overnight. Take that, beta cells. I don’t need you at all (unless you want to work again in which case I take it back and I totally need you).


This one is my absolute favorite. We got a cake at camp when all the nurses had passed their boards (I was the last one to take the exam, of course) and my bg was holding steadily under 100 from the time the cake arrived to the time we could eat it. I had to document this, obviously.

Sometimes diabetes plays fair. Sometimes it doesn’t. I like to keep these pictures to remind myself that no matter what I do, this stupid disease has a life of its own.  I’m also convinced it decides when it wants to play along and when it needs more attention, but that's a rant for another day.
*   *   *

All this talk about photos is making me feel veeeeery guilty about not keeping my Diabetes 365 feed up to date.  I need to get on that. :)  Are you a diabetes paparazzier?  Do you like to keep visual tabs on your diabetes bits and pieces?

August 23, 2011

Where the Islet Cells End.

(A tribute to Shel Silverstein's beautiful, "Where the Sidewalk Ends.")

There is a place where the islet cells end
And that's where diabetes begins.
In this place, you can stumble and things can get scary
Those moments when numbers make you feel so wary
And the burden is almost too heavy to carry
This is where our community comes in.

Let us leave this place where misconceptions grow
And the damaging articles win.
Where the blood sugar pendulum swings to and fro
And the mindset of fear leads to … well, I don't know
Past the place where you're told that you reap what you sow
To that place we find strength deep within.

We'll all write with a purpose that's true and we'll know
That our words make a difference; the world we will show
What it means - "Diabetes" -, and together, bestow
Our support on each other.  Our friends.


Image credit to the epically talented Shel Silverstein.

August 22, 2011

Changing the Animas Ping Song: Top Gun.

A few years ago, I was talking with (or was I actually hanging out with?) Faye from SugarBump.  She's a talented photographer, baker of some badass Novolog cake pops, and discovered she's apparently a crackerjack Animas composer.  Our very own Beethoven ... only she did something better than Beethoven.  She figured out how to replace his Für Elise on my pump with ... wait for it ... the Top Gun theme song

Problem was, I had to wait forever to make the switch.  I switched to an Animas insulin pump back in January of 2010, when I was seven months pregnant with the Bird.  The last few weeks of my pregnancy were very stressful, and then when the baby was born, life took on a decidedly different list of priority "To Dos."  My desire to reprogram the tunes on my Ping ended up forgotten. 

Until recently, when I re-stumbled upon an email from Ms. Faye, which included the music file for the song upload.  And I was determined to make the switch.

After sending the diabetes-Batsignal up to the TuDiabetes community, I received the instructions on how to change the song.  (Click here to view the user guide, and then scroll down to page 60 for the instructions.)  The result?


(Here's a teaser from an upcoming Animas vlog about new tunage for my Ping)

If you want the Top Gun theme for your Ping, email me and I'll send you the audio file for the EZManager Max software. If you have any tunes that you've composed and you want to share them, let me know! 

And, for the record, I'll be your wingman any time.

August 19, 2011

Sixteen.

Oh, you.

Birdzone, you are sixteen months old.  And that's, like, a big deal because you've now been "out" for double the amount of time you were "in."  That's some nice, neat math that I can handle.  (Unlike the calculations of how many diapers your dad and I have changed in the last sixteen months.  That's a staggeringly gross number.)

Every day with you is a a strange little circus (with you as the short ringmaster and me as the bear on a unicycle).  The learning curve now has Dexcom-esque double arrows up, because you are doing something new every single day.

You have inherited your mama's techno-joy.  You want to hug and snuggle my cell phone (when it rings, you are astounded), and you have your own "cell phone" (an old Blackberry of mine) that you wander around the house with, "talking."  You love the Dexcom receiver (and you also loved Abby's Dexcom receiver, smashing mine and hers together at CBC this week and disrupting the diabetes space-time continuum).  And you love the remote control.  If it has buttons, you want to push them.  Including your belly-button, which you've recently discovered and you obsessively check to make sure it's still there.

"And my mom was all BLAH BLAH BLAH ..."
"And my mom was all BLAH BLAH BLAH ..."

Your hair continues to be an evolving, yet beautiful crisis.  Because you have more hair that most adults, you get warm fast.  Actually, you start to sweat madly whenever the sun is out (or at least that's been your deal this summer ... we don't have much to compare it to), so keeping your hair off your neck and out of your face is a struggle.  Thankfully, it's finally long enough for what I've been dreaming of since I found out you were going to be a girl

Pigtails.

I freaking love pigtails.

I freaking love pigtails.  I couldn't be happier that you're patient as I comb your hair into these two, crazy ponytails, and I love that when you run, they bounce like rabbits.  Pigtails rule.

AHHHHH!  More pigtails!  I'm losing it.

You toddle around the house and the yard, talking your face off all day long.  There's no way you don't have a sore throat by the end of every day because you are always BabbleTown, talking to your feet, the cats, one particular tree in the backyard, anyone who calls on the phone, and to each person you come into contact with during the day.  You.  Have.  A.  Lot.  To.  Say.  (No clue where you get this chattiness from ...)  

I do have one concern, though.  

Boys.

Dude, I don't know what your deal is, but you love boys.  All kinds.  You tried to hug the ancient man at the grocery store who complimented your curly hair.  You flirt with guys my age at the grocery store (which is super awkward - "No, she has a dad.  I'm all set, thanks.").  And at the pediatrician's office this week, you tried to snag an older man - this cute little 11 year old kid who was there for his before-school physical.  After batting your eyes at him for ten minutes, you went over and tried to climb into his lap, repeatedly offering him some raisins.  "OMG, Birdy, leave that boy alone!"  But he was super chill, and said, "It's okay.  She's so cute.  I don't mind if she wants to play."  So you and that 11 year old boy chatted and giggled.

"I'm Kerri," I said to the boy's father, who was smiling at The Bird and His Boy. "Nice to meet you, and thanks for letting my kid bother your kid."

"Hi.  I was about to introduce myself to you.  I have to, seeing as how we are going to be in-laws."

Stop flirting, Birdy.  You are making my head explode.

Love,
Mommy.

August 18, 2011

The Elusive 104 mg/dL.

Nothing says "Good morning!" quite like the number on the meter packaging:

It's like an advertisement for OMG DIABETES CONTROL!!!

Take that, diabetes.

August 17, 2011

The Revolution Will Be Blogged.

Yesterday afternoon I was lucky enough to be back at Clara Barton Camp for Family Camp, speaking with some of the parents (and a good number of the kids) about using the Internet for diabetes information.  I've had similar discussions with other groups, but each time there's something new to learn, and something cool to share.

Oh wait.  But I've never done this session with my daughter padding around the room and pointing at people, asking "What's daaaaaat?"

This discussion was put on my calendar recently, so finding a babysitter quickly wasn't working out for me.  I mentioned to Abby, who works as the Charge Nurse at CBC, that I may not be able to make it. 

"Don't worry.  Bring her - I'll watch her."

"Seriously?  But it's not exactly in your job description at SUM ..." 

"Not a problem.  I love kids."

So while I participated in a discussion with the parents and kids, Abby and BSparl hung out. 

It's hard to recap a discussion that goes in a million different directions; it's like tracking blood sugar trends.  The parents of kids with diabetes are always amazingly insightful, emotional, and open, and their kids are nothing short of amazing in their honesty about diabetes. 

The session was very informal and open-forum style, with everyone gathered in the Great Room, chairs circled like wagons.  We talked about making the decision to share personal health information online, and the personal choice to disclose your name/kid's names/cat's names.  We talked about making clinical research accessible and digestible for both parents and kids, letting even the younger kids own and understand information about their disease.  And, of course, we talked about social networks.

"There are niche communities even within this niche community.  Back when I first started blogging, I wanted to find other 20-somethings who were going out on dates, finding jobs, and doing stuff, you know?  And now, I want to connect with other parents who have diabetes.  There's truly something for everyone, but if you can't find what you're looking for, it's easy to create for yourself."

The diabetes online community wasn't created because someone paid us or because a big company tried to wrangle us all into the Internet to share our stories.  The DOC was borne out of necessity.  The emotional and psychological parts of diabetes management sometimes require more time and attention than blood sugars and doctor's appointments because you need to have your head truly in the game to manage this demanding disease.  This kind of support is necessary, readily available, and part of a true patient revolution.  (And it appears the revolution will be blogged!)

Even though I feel very supported by my husband and family, and by all of you guys in the DOC, diabetes is always showing me that I'm never done learning.  I'm grateful for the many support outlets available to me, and I'm inspired by CBC to help the DOC reach more families who could use someone to lean on.  We're in this together, and every time I visit camp or hang out at a support group or conference or meet-up, that point is driven home.  People with diabetes are some of the most accepting and supportive people I've ever met.

... besides, there's something so awesome about bringing BSparl to camp, and watching her point to other people's pumps ("Puuuuuum!") and exhausting herself playing with her mommy's friends. 

(Thanks for watching her yesterday, Abby!!  She fell asleep as soon as we got into the car.)

August 16, 2011

Missing: The Rest of my Infusion Set.

Last week, I ripped an infusion set off my arm - by accident - with such force that I knocked the "teeth" clean off the part that connects with the "hub."  It happened sort of in slow-motion, with BSparl hollering "Maaaaa maaaaaa!" and the pump site disconnecting in a way that sort of sounded like a wet tennis ball hitting a racket.

The infusion set hub thing flew across the kitchen and landed in an unknown place that even a full (and literal) sweep of the floor didn't recover it.  My arm was sore.  My pride was, too. 

I am Kerri's swift and sudden gracelessness, and I'm as chronic as diabetes.  ;)

August 15, 2011

Bar Harbor 2011: Giant Spider Edition.

Every year, Chris and I pile our backpacks into the car, hope gas prices are low and traffic volume follows suit, and we make the long trek up to Bar Harbor, ME.  I don't know what it is about this little part of Maine that makes us return every summer (or fall, depending on moving and babies and other Sparling-type chaos), but we love it. 



Our days usually start at the 2 Cats Restaurant, where the food is endlessly awesome and they actually have two cats trotting around the place.  I like that.  They named it 2 Cats and they meant it.  I admire their commitment to Sparkle Motion.



In Acadia National Park, we found this staircase leading down from the main Park Loop road to a beach lined with sea-polished rocks.  Like others before us, we built some creatures (like this majestic ... rock rat) and we also saw a giant unicorn horn



We took some photos to prove that we were there.  (Only we don't have any photos together - such are the perils of traveling as a couple in a national park, without a place to set the camera and attempt the awkward self-timer shots where one of us is always blurry from running to make it into the shot.)  Basically, it looks like I went to Bar Harbor by myself.



Chris and I explored a lot of little side trails, sometimes ending up down a hillside and wondering how to get back up.

We also did the Jordan Pond hike, which is a really walk around the pond and then back to Jordan Pond Tea House for popovers and tea.  Only during the course of our walk, I saw the biggest freaking spider I have ever seen in my life.  I can't post a photo of it on here because I do not want to visit my own blog and see it.  But I did put it on Flickr.  Consider yourself warned - it's MASSIVE!!

Diabetes-wise, it was not an ideal trip.  Our full day at the park started with a low blood sugar (<60 mg/dL) that didn't give up for over three hours.  I spent the majority of the morning drinking juice and thrashing through test strips in efforts to keep tabs on my plummeting numbers.  Then, of course, the rebound high kicked in a few hours later, leaving me between 180 - 220 mg/dL for another few hours.  It was frustrating, and it kind of wiped me out.  I didn't have the energy to attempt some of the tougher climbs and hikes because I was drained from such a long low.  I was kind of bummed out about it, to he honest.

When we were on the rock beach, I saw that many of the rocks were this blue-ish, gray shade, all polished and nice and waiting to be united for diabetes

I took out my diabetes frustrations on the rocks, piling them up and appreciating the pun.  Because PWD, and the people who love them, rock.

[Looking for more photos that look exactly like other photos I've taken in Maine?  ;)  Check out the Flickr set!]

August 12, 2011

Guest Post: For All the Ladies.

Carey Potash is one of my favorite writers.  Period.  Not one of my favorite bloggers or one of my favorite diabetes-centric scribes, but just plain one of my favorite writers.  His writing makes me think.  He makes me laugh.  (And he makes me cry while I'm laughing, but I don't realize it until my cheeks are wet.)  Carey has agreed to write a guest post for me today while I'm traveling, and I'm absolutely honored to have him.
*   *   *
Several years ago I stumbled upon a blog post that flat-out knocked me on my ass. It was a riveting and terrifying account of a young woman experiencing severe hypoglycemia while at the movie theater

I was immediately pulled in emotionally. I couldn’t help but view this as a future window into my son’s life – when he’s in his 20s and I’m not there to protect him when he’s in trouble.

Her vivid and eloquent writing thrust me into the scene as it played out like a diabetes thriller. I was a wreck. I found myself screaming at my computer screen – at the girl working the concession stand - while biting off half of my thumbnail.  “For God’s sake, give her the damn juice! She needs juice!”

The writer’s name escapes me now, but whoever she was, she was a huge influence on me as a blogger. I think her name was Linda something.

Just kidding, Kerri. The blog was Six Until Me and I became an immediate fan. It was right about then that I decided that I too wanted to write about diabetes and share my story as a father of a child with this disease. It’s an honor to be a guest blogger today at Six Until Me.

This one goes out to all the ladies.

The fourth-grade ladies.

Hey, I know you’re a little young to be thinking of marriage, but …

Hey ladies.

Look at this face. Come on. Is this not marriage material?

Listen, I know you always thought you would one day marry Timmy Clifford. Timmy Clifford is a fine choice. I’ll give you that. But let’s not be hasty. Let’s not let his supernatural kick ball skills cloud your judgment. Have you seen some of the lunch trades he makes? Oreos for Fig Newtons? Fritos for cough drops? Are you kidding me? He is a failed stock options trader in the making. You’ll both be living out of a Walmart shopping cart by the time you’re 29.

If you’re thinking that Charlie would be perfect if not for diabetes, don’t. If you’re thinking that diabetes is contagious, don’t do that either. It’s false. There is so much more to Charlie than diabetes. Everyone is a bit broken in one way or another. So, Charlie’s broken thing is a sticky organ the size of a woman’s sandal. There are worse things.   Charlie is strong like bull. He’s smart and he’s determined and he’s got a good heart. He can do anything. And he’d never, EVER, in a million years trade away Oreos. Choose Charlie! Act now and we’ll even send you this incredible onion peeler free.

OK, sure, he has some flaws.

He counts down NASA-style before launching every fart.  Even worse, he gives the pre-emptive “Uh Oh!”  just seconds before each blast. Your fear that he might still do this when meeting your parents and your two sisters for the first time at a fancy restaurant in Manhattan are legitimate. I’ll grant you that. I can’t guarantee that he won’t. I really can’t. Hopefully he’ll outgrow that.

Diabetes, he won’t outgrow. I hope you’ll know that and not give a crap. I hope you are blinded by love.
 
Know this. We’ve had Charlie enrolled in intense diabetes management training for more than seven years now. At 9 years old, he’s already quite adept at counting carbs, testing blood sugar and removing infusion sites. By the time you are married, we will have molded Charlie into a highly advanced, technologically savvy diabetes machine. Hmm, that probably doesn’t help my case. Scratch that. We will have turned Charlie into a nice boy with good morals, high career expectations and the tools to manage his diabetes responsibly.

Think of the pros of marrying a person with diabetes. You like going to Disney World but can’t stand those long lines? Well, when you’re with Charlie you’re with a VID (very important diabetic). No lines for you. Red carpet, paparazzi, complimentary Botox … it’s all quite lavish. Caviar wishes and champagne dreams.

Don’t know the time? Charlie is a human clock.

Need protection from British rioters? Charlie is always armed with sharp foreign objects.

Ran out of cake gel for that birthday cake you promised to make but the supermarket is closed? Check Charlie’s diabetes bag.

Late for work? Pulled over for speeding? Defaulted on student loans? Tell ‘em your hubby had a low blood sugar.  Works like a charm.

Oh, and speaking of cake, don’t listen to what Timmy Clifford says. Charlie WILL be able to eat his own wedding cake. Feel free to shove that wedding cake into Charlie’s gullet and smoosh it all over his face. Just remind him to give himself insulin for the cake if he gets caught up electric sliding all over the place. Just be there for him in times of need. Just like he will be there for you. The way all married couples should be, disease or no disease.

Or maybe you’ll never know a thing about life with diabetes. You’ll never become the worried wife of a diabetic. You’ll just grow old together.

You will be on one of your evening walks with Charlie, your liver-spotted hands clenching his. He’ll tell you again about how he had diabetes when he was a child. You’ll remind him that it didn’t stop him from being a star baseball and hockey player and a world renowned architect. He’ll squeeze your hand and nod. He’ll recall the incredible party his parents threw for him when he was cured at age 22.

And you’ll smile, having heard the story many, many times before.

*   *   *

Carey, if Charlie doesn't mind a younger bird, I know just the girl.  She's never liked that Clifford kid, anyway.

August 11, 2011

The Glucose Meter Shuffle.

I have several One Touch meters, a Freestyle one, and a Dexcom continuous glucose monitor that I consult on a regular basis.  (Not usually at the same time, but I have been doing multiple checks recently.  More on that below.)  I also have an Agamatrix meter and an Accu-chek one, somewhere in the diabetes cupboard in the bathroom, only without any strips that aren't expired. 

And I have a lot of anxiety when it comes to glucose meters.  The variability of these machines makes me crazy in the head, and it caused me a lot of grief when I was pregnant, because my blood sugar goal range at that point was so tight and so specific, and any variability was huge for me.  (I shared some samples of wonky results in this post.) 

In the last few weeks, I've been doing some experimenting with my meters, inspired by at-home research conducted by Stacey at The Girl with the Portable Pancreas.  It's an messy process, which includes testing with several meters at one and trying to grab a photo.  It's also messy because it involves the people at One Touch (because they provided me with some spare strips after I spoke with them about my meter issues and I have a running dialog with them about this problem), my insurance company (because I had to work with them to get a partial prescription covered for a batch of Freestyle strips), and my patience (because I'm short on that due to the aforementioned). 


So far, I've noticed a few trends:  The Freestyle meter almost always runs higher than my One Touch meters.  I'm not sure if that makes it more "accurate" or not, but it is consistently higher.  Thing is, there isn't a pattern I've found yet when it comes to syncing up with the Dexcom.  For example, the photo below has the Freestyle much higher than the One Touch meters, but my Dexcom was at 98 mg/dl with a down arrow, and I felt low.  So what am I supposed to trust in that instance?  If I go with the One Touch results, I'm potentially treating that number.  If I follow Freestyle, I'd happily get in the car and drive at that number. 

So close, yet so freaking far.

The One Touch meters are usually close to one another (like in this photo):

But are they close to my actual blood sugar?

But are they close to my actual blood sugar? When I was pregnant, I saw One Touch meter results that seemed lower than I felt, and when I consulted with the Dexcom, I was prompted to recheck.  Then I'd see a higher number on the meter.  Without the Dexcom, I wouldn't have ever second-guessed my meter.  Part of why I wanted to conduct this meter comparison now was to see if I could duplicate those variances and then document them, but I haven't seen the same problems since running these tests.  (I know it sounds weird to be frustrated by a lack of problems, but it's like when your car makes a noise when you're driving around town, but refuses to make the same noise when the mechanic is standing there.  How can they fix what I can't show?)

I know there is an "acceptable" 20% margin of error, but how would you even know to double-check your meter?  This issue matters to me, and it matters a lot.  These glucose meters are the only tools I have to monitor my blood sugars, and I make treatment decisions based on their results.  I need them to be consistent, and accurate.  If I'm treating highs that aren't high, I could end up with a serious hypoglycemic event.  And if I'm treating lows that aren't lows, I'll end up running higher and that, in the long run, will hurt my body.

What is my "true blood sugar?"  Is it the result from the machine at the endocrinologist's office (which I believe is an old school One Touch)?  Is it the lab result from a venous sample?   Is it from any meter I can use at home?  How can I trust any glucose meter fully, knowing these variabilities exist and are FDA accepted?  What can I (we?) do to tighten these results?

How can I feel safe?

[Disclosure:  I have a relationship with Dexcom. And Animas.  But my relationship with diabetes takes precedence over any business relationship.  So while my bias is exposed, I need to also say that my bias is highest when it comes to making sure I'm healthy.]

August 10, 2011

Diabetes Feeties.

Old photo, but those feet remain pretty adorable.  Except when she steps in the cat food bowls.  Less adorable then.(That has to be one of the goofiest subject lines I've had in the last few ... evers.)

A few days ago, I received an email from a fellow T1 PWD who has been living with diabetes several decades ... but hadn't ever had a pedicure in her whole life.

And I replied:  "Neither have I."

There were several crutons of information thrown at my family and I upon my diagnosis almost 25 years ago ("Don't even think about getting pregnant" and "Pedicures will cause massive infections so none of that, either" being repeat offense croutons), and getting a manicure or a pedicure was always marked as a no-way back in the day.  However, times are doing their "changin'" thing

From what I've been told, the risk is a possible infection.  With all that filing and scraping and whatever else they do while they grapple with your toes, there's a chance of a foot wound.  And then an infection.  And all hell can break loose.

Or so the rumors go.

Personally, I've never cared about a manicure of any kind.  I don't know if there is a manicure "type," but if there is, I'm not that girl.  I don't like nail polish on my fingernails.  I don't like nails any longer than my nailbed.  I'm a writer, the mother of a young child, and I do a lot of housework, so my hands aren't for "show."  They're for work, and I beat them senseless on a daily basis.  

As far as a pedicure goes, I paint my toenails all the time.  (Right now, they're a lovely rose color.)  But I do it myself, and I file my nails with a basic emery board.  I have one of those As Seen On TV! PedEggs and I use it when the hot beach sand and my flip flops take their toll on my heels.  But for the most part, my beauty regimen from the ankles down is simple.  So long as my feet look nice, I'm happy.

Because secretly (shhhh, don't tell anyone, okay?), I'm a little scared of a pedicure.  It's on that BIG LIST of things PWD ARE NEVER TO DO and it's always highlighted in the scary chapters of diabetes books.  But is that fear legit?  Are nail salons brimming with germs and grossness, and do the nail technicians come at you with giant buzzsaws o' destruction? Or is it a judgment call that people with diabetes need to make on their own?

Has anyone with diabetes had a pedicure and survived to tell the tale?  What are the dos and OMG-don'ts of getting your mani-pedi on?  (And be honest:  does it tickle as much as I think it does?)

August 09, 2011

Guest Post: Sleep, Perchance to 100 mg/dL?

Jessica Phillips guest posted on SUM a few years ago, talking about her first 500 days with diabetes.  (Which prompted me to do the math, and as of today, I've lived approximately 9,097 days with type 1.  Weeee?)  And today, she's back to talk about how her perception of sleep has changed for her since her diagnosis in 2008. Thanks for posting today, Jessica! 

*   *   *
Jessica Phillips, guest posting again on SUM.  Happy to have her!!There has been a topic of debate in my mind recently, and it revolves primarily around sleep and diabetes. Thinking back to my childhood, I fondly remember the arguments I would come up with whenever I was prompted by one of my parents to go to bed. My protests against what I now deem as the most glorious of all activities included: "No, I am not sleepy/tired/ready" or "I am just resting my eyes right now." In futile protest I would also rebuttal with “just one more TV show," or “just five more minutes.” My younger self was so adamant that going to bed was an inconvenience, and I'd keep putting off until it could not be put off any longer.  Sleeping seemed like a chore! Diabetes continually brings these childhood memories to surface and I have to laugh because I wish so badly for the simplicity of those memories from years ago where just going to bed was so easy, and yet I fought against it. Now that I am older, as well as a person with diabetes, I of course wish for an unreachable goal at the end of a long day - to just go to bed.

For the first 26 years of my life, my bedtime routine only consisted of, well, going to my room, getting into bed, and closing my eyes. I was diagnosed with Type 1 on January 25th, 2008, and since then my routine has developed into an elaborate to-do list. I now long for the days when sleep was so simple and the steps to reach such euphoria were just a pajama-change and a teeth-brush away.

My nights require me to not only stab myself in multiple areas of my body, but also include worrying about several things, including (dramatically), an accidental overdose or unintentional miscalculation possibly leading to very scary things. Adding to my nightly routine of removing my contacts (stupid nearsightedness), brushing my teeth, and sometimes washing my face, I now add: the testing of my blood sugar by pricking one of my fingers (or several if they’re not cooperating) on one or more test strips (those suckers really love to Error 5 sometimes), deciding based on that blood sugar reading what happens next, injections of two types of insulin (Novalog and Lantus), thinking about the last time I ate and what it was that I ate, calculating in any recent exercise/alcohol/food/medication (and by calculating, I mean guessing), batting away anxiety about possibly taking too much insulin or not enough, and worrying that I might wake up a few hours later either in a cold or hot sweat wondering what went wrong. Or even on the rare occasion I will, (now very dramatically), wonder if that night will be the night that I don’t wake up and my body decides to stop alerting me of hypoglycemia and I will become a victim of the feared "dead-in-bed syndrome."

For those of us with type 1 these nightly checklist items are all normal, because this is what we have to do in order to stay healthy and living. For myself, I notice a lot of the differences between a diabetic and non-diabetic lifestyle.  I have been living with Type 1 for 3 ½ years and I am still becoming adjusted to the fact that I have a chronic, and mostly intangible illness. I often wish for the ability to just go directly to bed without the worries and tasks involved with diabetes. I want to simply become tired, turn my alarm on, and go straight to bed. No worries, no anxieties, no fear ... just blissful sleep. Of course, if this were a diabetes wish list I would wish for a lot more than the ability to skip the nightly routine (Hello, cure!) but it’s hard to not miss the little things sometimes.

I will admit there have been several occasions where I have had to indulge in an irresponsible trip straight to my bed where I didn’t bother to check my blood sugar, take even my basal insulin, or allow myself to think about diabetes-related thoughts. I feel as though diabetes forces the need to establish such a high level of constant control over my life that it is necessary to sometimes just take a night off in order to not go into the crazy deep-end of psychosis. I always find solace in reading about other people’s experiences with type 1, especially pertaining to the emotional side of dealing with this disease because to simply put it, it’s a pain in the butt (and the hip, and the fingertips…). I can see why the depression rates are typically high with this illness because it’s such a never-ending chase to reach near-perfection, and the reality remains that it’s impossible.

Numbers rules our diabetic lives: A1C, mg/dL, carbohydrate counts, insulin-to-carb ratios, hours of time spent doing things that will affect the aforementioned numbers ... also known as "everything." If we diabetics had a hip-hop anthem it would definitely be called, “Numbers Rule Everything Around Me”.  [Editor's note:  Holy Wu-Tang reference!]  As I go off to bed, I try to remain grateful for everything I have in order to gain a more balanced perspective, but I’d be lying if I didn’t say that my wish is to run straight to my pillow and fall asleep.

So here’s to waking up to 100 mg/dL, and good night!

*  *  *
Jessica Phillips is a California native living in San Diego, CA. She was diagnosed with type 1 on January 25th, 2008 and her goal is to stay connected with the T1 community both locally and online. Jessica has a Bachelor's in Art History, as well as a Master of Arts in Public Administration and is completing her schooling in February 2012.  She currently works as a graduate school counselor, and hopefully she'll be sharing her thoughts on SUM again soon.

As a PWD or the caregiver of a PWD, is your bedtime routine impacted by diabetes?  For me, I always have this compulsive need to check the insulin-on-board on my pump.  That, and I keep a jar of glucose tabs on the bedside table.  Without these two things, sleep is restless.  (Pun sort of intended.)

August 08, 2011

Different People With a Common Pain.

Over the weekend, in the ridiculous downpour, I headed up to Clara Barton Camp to hear Dar Williams sing.  Dar is on a summer camp tour, and she ended her stint by singing to a group of girls whose pancreases (pancrei) have gone on hiatus.

Dar doesn't have diabetes.  And when I spoke with her after she performed, she told me that she was moved by the campers at Clara Barton, getting to know what type 1 diabetes is all about.  "They have an energy that's just unparalleled." 

Kerri Sparling, Dar Williams, and a painting of the pond that supposedly has two snapping turtles in it.
Snapping pics with the lovely Dar Williams
(and thanks to Julia R. for offering to camera-wrangle!)


I'm not that familiar with Dar's music (though she has a lovely voice), but she was engaging and sweet and her talent is obvious.  She played a few songs in that old CBC barn, and had everyone laughing and singing, and when she asked for requests, a group of CBC staffers raised their voices together from the back:

"Family!  Family!!"

Dar smiled (after cupping her hand to her ear and saying, "Emily?  What?  Ooh, FAMILY!"), and the room quieted down as she began to strum her guitar.

I've never heard the song before.  Dar told us that it was written by a friend, about another friend who had passed away, and the lyrics spoke to that collective mourning and healing.  She sang alone for a beat or two, but the campers and staffers joined in after a moment. 

"You are my family,
You are my family.
We stood outside in the summer rain,
Different people with a common pain."

The rain was still falling outside, on a humid August day.  Hearing her sing those lines grabbed me, even though I knew they were intended for a different cause, but they applied to the room.  A room full of pump wires and insulin pens and glucose meters.  Some girls were smiling.  Others were hugging the person sitting next to them, crying openly and without any fear whatsoever. 

Different people with a common pain.

Clara Barton Camp is home for so many, even those of us who barely visit anymore.  It's the place where I first saw a community of people with diabetes.  It's the first place I felt like needles were no big deal.  It's the only place I'd ever felt "normal," until the online community began its journey. 

Even though I barely knew a soul in that room, they are my family.  That's how it works.  And that's an incredible thing.

August 05, 2011

Hacked: Jay Radcliffe, Insulin Pumps, and Diabetes Sensationalism.

Jay Radcliffe is a fellow type 1 diabetic, and I remember reading his diabetes blog way back in the day, when I first started blogging.  We read and commented on each other's posts, and we were both part of the blogosphere when the DOC first started to grow.  I knew he was married, had children, and did the day-to-day diabetes stuff that I did.  


Which is why when I read the mainstream media's take on his pump-hacking research (this article, Insulin Pumps Vulnerable to Hacking, for example), I reached out to him immediately.  "Can I just tell you that my mother sent me this article about your research?  Do you have time to talk?"


Jay was out in Las Vegas this morning, attending the Black Hat security conference, but he and I had a chance to hash it out over the phone.  


"I know you!  And I know you as a diabetic, not as this guy who hacks insulin pumps and has a billion articles floating around about it on the web right now.  I have a few questions.  Starting with, why did you decide to hack into your own insulin pump?"


"I'm a professional security researcher.  I'm curious - I want to find out how things work," Jay said.  "I saw a presentation two years ago on parking meter hacking, and I was really inspired by that.  It prompted me to talk to my co-worker with type 1 and said, 'We should try that.'  I'm wearing these devices every day, and I wanted to find out how secure these things are."


"So you took your own pump, and your own continuous glucose monitor, and hacked it to bits, literally and figuratively?"


"Hacking isn't what people often think it is.  It's not about breaking into things or being malicious.  Hacking is making something do something it's not supposed to do, or not intended to do.  Like the guys on Mythbusters do," Jay said.  "And vendors need to know about these vulnerabilities. Is it deterring from actual diabetes cure research?  I don't think so, but if it is, people can't be mad at me for bringing the issue up.  If you want your insulin pumps to be safer, I have to do this.  I'm sorry if it makes people upset, but I'm doing this as ethically as possible.  I didn't disclose the brand of device that I wear, and I kept the company protected to the best of my ability."



This makes sense, but I ran a quick Google search before getting on the phone with Jay, and I saw all kinds of articles making it sound like people with insulin pumps were the next targets for technological terrorism, and people within the diabetes community were upset because this kind of security breach potential could perhaps cause the already-slow FDA to cease diabetes device approvals in their tracks.  To me, as an Animas pumper who is waiting impatiently for the Vibe to be approved, I was not soothed.


"Are you concerned that you may have given the FDA another reason to hit pause on some device approvals?"  I asked him.  

"I am concerned.  Aren't you concerned about the fact that the FDA doesn't have any guidelines around wireless transmissions?  Don't blame the FDA's crappy process and make things less secure because you want something better.  Make it comprehensive and make it better, don't just move fast to get it on the market."


"I get that, but I’m not at all worried about someone hacking into my diabetes devices.  Jay, do you really think people with diabetes are targets of some kind?  And don't you wonder if, by bringing this issue up in such a public and pretty sensationalist way, that you're planting the idea into people's heads?" 

Jay is unflagging in support of his research.  "I've presented it on stage, and showed over five thousand hackers how to do it.  I suspended my own insulin pump, and I did it remotely.  And yet I'm still wearing my pump, and I am not afraid to wear my pump.  My hope is that other people will pick up the idea and work on it, and that the ethical and professional people will do more research and help make things secure."

"But do you really have to show the insulin pumper with X's over their eyes and the evil, pump-suspending guy lurking in the background?"

(I can't help it:  I respect the views of my fellow PWDs, but that doesn't mean I'm not frustrated when people sensationalize diabetes.  It's the same viewpoint I have when people want to use images of chainsaws when they are informing people about the very real risks of diabetes-related amputations.  I'm just not into that kind of press for diabetes.  I don’t agree with sensationalist journalism, so I don’t agree with the method that Jay chose to present his information. While I get the whole “sex sells, so you have to keep it sexy” ideology, his choice to present this security issue as though it was a secret agent plot isn’t something I agree with at all.  Similarly, I’m annoyed that the mainstream media is making it sound like diabetics wearing pumps are ticking targets.  This is the information about diabetes that makes the front page?  Societal fail.)

Fellow PWD and tech blogger, Scott Hanselman, summed it up nicely:  “I appreciate the message that Jerome is trying to get out there. Wireless medical devices need to be designed with security in mind. I don't appreciate blogs and "news" organizations inaccurately scaring folks into thinking this is a credible threat.”

"In security research, you have to bring home the point,” said Jay.  “The technical details can be boring, but a presentation at a conference like this can't be.  You need to show the most dramatic asset to keep people's attention and to make them care.  In this instance, the insulin pump is hackable.  I can suspend your pump.  And that can have serious consequences.  I'm not trying to hurt my fellow people with diabetes.  Instead, I'm trying my best to protect them.”  

As a pump wearer myself, and a continuous glucose monitor wearer, I’m not concerned about being hacked.  I’ll sleep fine tonight … until I see the sensationalist headlines of tomorrow.  And that’s when I might need a bolus of serenity. 

Sam Talbot: Putting Life First.

Sam Talbot is a talented chef, scoring high ranks as "Fan Favorite" on Top Chef.  My mother-in-law thinks he's handsome (and she's not alone - ask half of the ladies at FFL!).  And he is "one of us," living with type 1 diabetes since he was twelve years old.  

Recently, Sam joined the LifeScan crew as one of their celebrity spokespeople for the "Life First" campaign, joining fellow PWD Crystal Bowersox and B.B. King.  And yesterday, he took some time from his very busy AADE schedule to take my phone call to talk about his LifeScan partnership, food, diabetes, and ... Tank?
*   *   *
Sam Talbot is just a little bit taller than me.

Kerri:  Hi, Sam!  Nice to talk with you again.  We actually met at the Friends for Life conference a few weeks ago, during the Adults with Type 1 Reception.  I was with the girl who has the diabetes service dog.

Sam Talbot:  Hello, again! I was talking about that dog yesterday.  Such a cool dog.  They have a diabetes service dog here at AADE; it gave me a sniff but must have decided I was okay, because it left me alone after that.

Kerri:  So to jump right in with my questions, I'll start with this:  What made you decide that LifeScan was the right partner for you … and do they ask you to cook things for them?

Sam Talbot:  Did they make me cook for them before the partnership, as like a test?  (He laughed.)  No, I partnered up with them because it was a really easy, organic partnership.  I'm all about the "Life First" concept.  It speaks to how I live my life with diabetes.  It’s about diabetes living with you, not you living with it. It really is about life, first.

Kerri:  Totally.  Food is often a double-edged sword for people with diabetes.  It’s awesome, it’s evil … and everything in between, depending on blood sugars and all that.  With your diabetes-focused cookbook coming out, what’s the message you want resonating for people with diabetes?

Have you pre-ordered Sam's book?Sam Talbot:  My whole approach with the book, The Sweet Life:  Diabetes Without Boundaries, was about showing people that, as a person with diabetes, you don’t have to be pigeon-holed into thinking there’s no carbs, no this, no that.  That a militant lifestyle, and anyone who knows me knows I'm not a militant lifestyle kind of guy.  I have had carbs.  And a beer.

Kerri:  Oh, a beer?  What were you thinking?!

Sam Talbot:  I know, right?  It's not about limitation, but moderation.  In my cookbook, I talk about making small changes for a bigger impact,  Alternatives like light flour, less processed sugar … smart changes.  It’s a good mentality for anyone looking to eat well overall, not just for people with diabetes.  This book, and my message, is about 75% cooking, and 25% lifestyle.  It's about continuing to educate people, and really showing this "Life First" message.  We have a lot of events and appearances scheduled, and I'm planning to really get out there with this.

Kerri:  So what message do you have for the diabetes community?   


Sam Talbot:  When you're diagnosed, you're told that you're limited and that you have to live this limited lifestyle.  And that's not true.  You are not alone with this - there are a lot of people out there living with diabetes who are doing everything.  Like you.  And like me.  

Kerri:  And one last question:  Are you looking into getting a diabetes service dog of your own?

Sam Talbot:  I can't.  Tank wouldn't let that happen.  

Kerri:  Tank?

Sam Talbot:  My dog.  

Kerri:  Does Tank ever sniff out a low?

Sam Talbot:  Nah.  But he does search for surf

*   *   *
Thanks for talking with me, Sam, and I'm looking forward to checking out your cookbook The Sweet Life:  Diabetes Without Boundaries (comes out on October 25th - preorder, anyone?) and watching you make the most of this LifeScan campaign.  I'm proud to have someone like you representing our community. 

You can find Sam on Twitter at @chefsamtalbot, on Facebook, and on his personal website.  And of course, chef'ing.

August 04, 2011

Animas Vlog: A Day at the Beach.

Sometimes I forget that not everyone has diabetes.  Here's a quick video about two different reactions from my trip to the beach last week.  (And how many cell phone/insulin pump references can I make in three minutes?  Several.  You'll see.)


At the End of the Rainbow.

Normally, the morning kicks off between 7:30 and 8 am, with my kid's voice ringing out from the baby monitor and jolting me from sleep. 

This morning, she decided that 5:30 was EXACTLY the best time EVER to wake up, and everyone should join her!  Ha ha!

So when my coffee cup ended up hugged by the rainbow streaming in through the front door window, I found it only fair:

I find this to be very appropriate.

Full coffee pot, blood sugar of 84 mg/dL (or 92 mg/dL, or 102 mg/dL, depending on which meter you ask), and a smiling baby ... this early morning is looking up.

August 03, 2011

Being an Adult at Children With Diabetes.

In the years I've attended CWD's Friends for Life conference, I always came away with this appreciation for what the conference provides for kids with diabetes, and their parents.  Kids - a whole bunch of them - running amuck and clad in green bracelets with pump tubing flapping from underneath their t-shirts ... it's a place where these families hopefully feel normal, and safe, and understood. 

But I'm not a kid with diabetes.  I'm an adult.  (I checked, and it's true: adult.)  I always felt welcomed at past FFL conferences, but people constantly checked for the kid at my side, because the "child with diabetes" surely couldn't be me.  (And then there was that time that the registration lady thought Sara(aah) was my child with diabetes, wherein my head exploded.)

Growing up with diabetes isn't hard.  It isn't easy.  I can't assign adjectives to it because it's all I've ever known, so growing up with diabetes is exactly synonymous to "just plain growing up."  My friends didn't have to take injections or chase NPH peaks, but we were in the same classes and rode the same bus and went on the same field trips, so we were "the same."  The difference, at that point in my life, was in what my parents had to do. 

Adulthood with diabetes is challenging, sometimes.  I had the support of my parents and my PWD friends at Clara Barton Camp when i was growing up, but once I was spit out into the real, grown-up world, things got more complicated.  I was on my own, following my own path, but I needed to bring along this bit of pancreatic baggage on the journey.  Even with my parents, and my friends, and my significant others along the way, I still had that nagging feeling of loneliness.

Except there are those moments when I'm surrounded by "my own kind."  And those moments are incredible.

This past summer at Friends for Life, there were a lot of us.  A whole pile of adults with type 1, found in sessions together, and strolling through the exhibit hall together, and corralled around a table into the wee hours of the morning; talking and testing and BEEEEEEEP!ing and despite our difference in opinion and background, we are all "the same."

We felt normal. And safe.  And understood.

It feel so good to talk about depression.  It felt so good to talk about the stress and guilt of aiming for, but rarely reaching, those goals set by healthcare professionals.  Even though I couldn't stop crying, it felt good to talk about parenting with type 1.  When someone's pump or CGM beeped, it felt good that fifteen different people reached for their pockets at once (only to realize it was - gasp! - just a cell phone).  Empowerment comes in many forms, and at the Friends for Life conference, for me, it came in the form of my fellow grown ups with type 1.  They are doing this, and I can do this, too.

Children with diabetes grow up. That's the point, right? - to have your child grow up happy and healthy and safe.  Children with diabetes become adults with diabetes.  There are already discussions in place about what adults with type 1 want to hear about next year.  Adults with diabetes finally have a place to call home. 

Thank you, CWD, for not letting your name limit your reach.

The Adults with Type 1 MeetUp at FFL.  Boo yeah!!

August 02, 2011

Birdy Finds a Pump.

Kid won't leave this shit alone.

She is so curious. 

"Whaaaas daaaat?"

Guest Post: The PODS People.

When I was at the Roche Summit in San Diego last month, I had the pleasure of hanging out with Brandy Barnes, founder of The Diabetes Sisters organization aiming to connect and inspire women with diabetes.  We were talking, as a group, about how Pharma has partnered with and supported diabetes initiatives across the country.  And today, Brandy has offered to guest post about her PODS program, which helps bring in-person support to people with diabetes and is an example of a quality partnership. 

*   *   *

Brandy Barnes"That’ll never work ... You can’t put type 1s and type 2s together and expect anything positive to come from it!" 

That’s a sentiment I’ve heard numerous times since I presented the concept of DiabetesSisters to the diabetes world back in 2008.  If you’re not familiar with DiabetesSisters, we are a nonprofit organization devoted to improving the health and quality of life of women with and at risk of developing diabetes; and advocating on their behalf.  In other words ... if you want to know anything related to being a woman with diabetes, we have a member, an expert, or a program that will help you find the answer! And, yes, we really want to erase the line that has been drawn in the sand between the different types of diabetes.

So, I’ve told you what it was like three and half years ago, now let’s fast forward more than three and a half years to July 2011: What started out as a woman who just really wanted to find a way to help women with diabetes and a trusting volunteer who agreed to be the first blogger on the DiabetesSisters website has now transformed into a bustling national nonprofit organization with not only online programming but also in-person programming. 

One of the cornerstones of our success is our PODS Meetup program.  If you are wondering where the name came from and what it stands for ... a volunteer who was involved in the creation of our first “meetup” came up with the name because the title “support group” was a bit tired and outdated. And after all, we are not the stereotypical typical support group you would envision.  We are a contemporary group of women who just happen to have diabetes and we like to meet up once a month to share our current concerns, accomplishments, funny stories, and even down-right awkward situations with diabetes.  We laugh, cry, and even get angry about our diabetes on occasion. Therefore, the name PODS (stands for Part of DiabetesSisters) was agreed upon because it invokes the feeling that we are all a part of something bigger, something specifically for women with diabetes.  The term "meetup" was agreed upon because it signifies that our modern and innovative approach to diabetes management in the 21st Century. 

Our first PODS Meetup took place in Raleigh, North Carolina in January 2010 and the Raleigh group has met on a monthly basis ever since.  Over the past 18 months, I have witnessed this group of Sisters form a strong sisterly bond with one another.  I have also seen them learn incredible lessons and uncover important health information from other women at the meeting.  Lesley Gray, a DiabetesSisters member who was diagnosed with type 2 diabetes a little over five years ago, shared with me, “Although my doctor had told me repeatedly that I needed to check my blood sugar more often, it just didn’t register with me ... until I heard my D-Sisters with type 1, type 2, and even pre-diabetes talking about the valuable information they gained from checking their blood sugars.  Now I understand that checking my blood sugar isn’t something I am doing to satisfy my doctor.  I am doing it because I want the valuable information I get from checking my blood sugar.  As a result, my doctor no longer has to remind me to check my blood sugar more often!” 

The first PODS Meetup

Another DiabetesSisters member, Pat Lewis, shared how she has lived with type 1 diabetes for over 50 years and had always managed it with insulin injections.  Although she had lived by the motto: “If it ain’t broke, don’t fix it” for many years, after attending a few PODS Meetups and talking one-on-one with women about their experiences with various pumps, Pat approached her endocrinologist about switching to an insulin pump.  "Although he was taken aback by my sudden take charge attitude, he was happy that I had taken more control over my diabetes management," she said.  Pat has now been on an insulin pump since the summer of 2010 and says it is one of the best decisions she ever made.  Then, there are the heartwarming stories of hope and support.  Kelli Turner, who has lived with diabetes for more than 21 years, and currently serves as the National PODS Meetup Coordinator said, “I always felt like there was something missing in my life….sort of a void in my life.  But, after my first PODS Meetup, it became very clear that what was missing in my life was the support of another woman living with diabetes ... another woman who really ‘got me.’  Life is good!”

Although PODS Meetups started in the Triangle Area of North Carolina (also our headquarters), it didn’t take long for the concept to spread across the state and even into other states.  We hold monthly PODS Meetups in three different cities in North Carolina and we have quickly “set up shop” (with the leadership of DiabetesSisters members, of course!) in San Diego, CA; Bracey, VA; Cincinnati, OH; Albany, NY; and Washington, DC.  We have PODS Meetups scheduled to start soon in many more cities/states, so there may be one in your area soon! 

You can take peek at the list of upcoming PODS, you can bookmark our Event Calendar, or you can register your interest in attending or hosting a PODS Meetup in your area.  What kind of diabetes you have, your age, or how long you have had diabetes is not nearly as important to us as just having the opportunity to welcome you into our ever-expanding Sisterhood and let you know that there is someone out there who really ‘gets you’! 

Now, every time I see one of those people who said, “That’ll never work”, I smile inside, so happy that I didn’t listen to them!  And that reminds me - a special thank you to Roche Diagnostics for seeing the huge potential and supporting the PODS Meetup Program early on! 

In Sisterhood,
Brandy Barnes, MSW
Founder/CEO of DiabetesSisters
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Thanks for posting, Brandy!  While I love the support found online, there is something even more powerful about spending time in-person with people who truly "get it."  How are you connecting with your fellow PWD offline?

August 01, 2011

A Casual Low.

Casual blood drop"Mama?  Ma.  Ma.  Ma.  Ma.  Dumbledore.  Ma." Her voice comes over the monitor, stumbling me from sleep.  

"BEEEEEEEEEP!!!"  The Dexcom wails at me from the bedside table.  

"[insert the sound of my awful alarm clock noise, which is actually this song and makes my whole head spin with cat rage]" 

"You people all want me awake right now, don't you?"  I grumbled, reaching for my meter, despite the fact that my eyes weren't even close to open.  Damn it, the meter is in the bathroom.

I moved casually from the bed, down the hallway, and into my bathroom.  The fog is apparent at this point; I know I'm low, and now it's almost a guessing game as to just how low I really am.  My eyes are sharp and focused on the black meter case on the bathroom counter, but all of my other senses are tangled.  The floor feels harder than normal against my feet.  The sounds of the birds outside the window sound louder, filling the room and blasting their trilling pattern into my brain.

I pricked my index finger and squeezed the blood onto the test strip.  A result of 39 mg/dl yawned back at me.

"Okay.  There you are," I replied, licking the blood off my finger.

Seeing the number usually brings the symptoms of the low on full-force, but this time, everything was in full-on casual mode.  My knees were weak and my hands were shaking, but for some reason, I felt the need to casually brush my teeth.  And then I casually brushed my hair.  And then, only then, did I venture downstairs to casually grab some juice from the fridge and treat my low blood sugar.  

In the kitchen, I downed a few sips of juice.  But once I was back upstairs, I realized how bad this felt.  Every symptom hit at once, and I felt like a boat being tossed around in a storm.  The shakiness.  The dizziness.  It wasn't casual, it was desperate. I needed just a few minutes to let this sugar hit and bring me back into range.

The baby was still happily chattering away in her crib, from what I could spy on the monitor.   I tried to tap my husband gently on the shoulder, but instead smacked him on the back kind of aggressively, my hands a little slack and unresponsive.  He woke up instantly, to see his zombie-low wife standing at the edge of the bed, swaying slightly.

"Can you get up with the baby?  I'm 39."  So casual-sounding. 

He was standing up before I finished my sentence.  "Did you have juice? Do you need juice?"

"No, I already had some.  I just feel too low to get her out of her crib, and I need a few minutes to let this mess finish."  I tried to smile, knowing it was more of a Novocaine-esque grimace due to the low.

"Okay.  I'm on the Bird," and he started to head downstairs.

I sat on the edge of the bed for a minute, letting my body catch up.  After a few minutes, the symptoms of the low started to fade, and the low hangover set in (that subtle, mowed-over-by-something-substantial feeling that follows a low and leaves you out of sorts for an hour or two).  My meter and my Dexcom both confirmed I was moving in the right direction, and seeing those numbers brought me back to a feeling of security and safety.

By the time I went downstairs to join my family, it was like nothing happened.  Totally fine.  Totally casual once again.

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