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April 29, 2011

The Friday Six: Birdday Edition.

The Friday Six: April 29, 2011 editionBusy, busy, busy.  Here's a rapid-fire Friday Six because any other blog post would ramble itself into oblivion.  Here we go ...

1.  So far this morning, I have baked 24 gluten-free cupcakes, three full gluten-filled cakes, and three dozen sugar cookies (shaped like birds) this morning.  Our daughter's "little first birthday party" has grown into a baking expedition my kitchen doesn't know how to handle.  Thankfully, this is the only type of cooking I am capable of, so bring on the elastic waistband pants!

2.  New columns are up at Animas for the month of April (sliiiiding in right under the wire with that one).  The first is about celebrating first birthdays, and the second is in homage to what happens when you consume an entire bag of sugar-free gummy bears. (Also, completely unrelated but sort of related: I'm looking for some vlog ideas.  Are there any diabetes-related vloggy bits you'd be interested in seeing?)

3.  A woman I met recently is searching for some kindred spirits.  Her young son is living with type 1 diabetes and Angelman's Syndrome, and she is looking for other people who are managing both conditions.  If you have any experience with Angelman's and diabetes, please email me so I can connect you with my friend.  Much appreciated if you can help spread this message along - the DOC reaches pretty far, and there has to be someone else out there who is looking to connect.  Thanks!

4.  While I didn't wake up at 4 am to watch the royal wedding this morning, I did Google Kate Middleton's dress right after I had coffee.  And I must admit - the first thing I thought was "Wow.  What a pretty bride!"  And the second was, "Man, she could really hide an insulin pump in that skirt."  Which caused me to go picking through my wedding album.  :)

5.  I'm not sure if you've been following the WEGO Health "Health Activist Writer's Month Challenge," but if you haven't, you should be!  Editor extraordinaire, Amanda Dolan, has been offering up daily blogging prompts that people within the health blog communities are snagging.  Even if you didn't participate during the course of the challenge, you can revisit any of the prompts if you're having a writer's block day.  Which I will need to do, once I'm done baking. 

6.  And six.  I had the pleasure of attending two different diabetes meet-ups this week (one in Rhode Island and one way out in Connecticut), and I feel revived in a diabetes sense.  I feel like if I go too long without a good diabetes meet-up, I fall into the burnout cycle more quickly. So thanks to my RI and CT friends for being pick-me-ups this month.  I'll be sharing more details about the meet-ups later next week, once the baking dust settles here.

Off to finish preparing for our party tomorrow!  Have a great weekend!

April 28, 2011

The Pinging and the Ponging.

Target lows struck again yesterday, only in the form of a "didn't test until after I ate and was only 53 mg/dl" sort of thing.  (Which made me wonder how low I was as I stumbled through the aisles of the store.)  I had BSparl with me, strapped into the shopping carriage, so I opened and consumed half a package of orange slices (happened to be in the party aisle I was perusing) without blinking.  With sugar-coated teeth, I smiled at my The pinging and the ponging and the game, set, match of diabetes bullshit.daughter, assuring her that I was fine.

"Mama is totally fine.  We're going to rock this low right up into the stratosphere with those candies.  Mama is going to need a whole bottle of insulin to fix this!" 

(She clapped her hands and cheered at the word "bottle.")

Low blood sugars have always frightened me because of the immediacy of their danger.  A blood sugar of 70 mg/dl can (and for me, often does) tumble into the 50's.  And 30's and 40's can quickly become part of the party, too.  Lows feel tangled and confusing.  I know they don't look too intense from the outside, but the panic and delayed response of my body that's internalized is exhausting and scary.  My body, and my brain, don't react accordingly to extreme lows.  While I should have found somewhere to sit down and eat, instead I felt a weird burst of energy and pushed the cart around with vigor while my blood sugar was in the trenches.

But what scares me even more is the rebound high that comes with such a scrappy low.  The lows that hit while I'm outside the comfort of my home - particularly when I'm solely responsible for my daughter - are the ones I over treat the most, because I just want to be high again.  I would gladly trade a 28 mg/dl for a 228 mg/dl.  But the reality is, I most often trade a 28 mg/dl for a 328 mg/dl.  I mean, we can talk about willpower and carefully calculated carb dosing, but what really happens is that when I'm excessively low, I eat anything I can get my hands on.  And fast.  And without wondering how many carbs are in it or how high the rebound might be.  I will do anything to make the tunnel vision and the shaking hands and the cotton-encased confusion STOP.

Yesterday's Target low rebounded up to 408 mg/dl.  I haven't seen a number that close to the gas prices in several months.  "Whoa," I murmured when the number flashed up at me from my meter.  "Hang on a minute, let's check that again."  323 mg/dl this time.  (I love how this passes for "accurate enough" in glucose meter technologies, but that's an entirely different post.)  My Dexcom looked like a carnival ride.  My mouth was now wearing the warm, wooly sweater of high blood sugar.  And I was pissed at diabetes.

I hate the pinging and the ponging.  Honestly, I'd rather hang out at 140 mg/dl all day long and take whatever consequences come as a result of that, instead of this wild swing of multiple hundreds.  Bad lows wipe me out, emotionally and physically.  As do their often-corresponding rebound highs.  And in the middle rests that guilt of "if only I had the restraint to not over-treat," or "if only I had checked my Dexcom earlier and caught that low."  

Diabetes isn't a perfect science.  Not even for a second.

Instead, I feel like I'm a mad scientist.  ... does this gives me license to work on an evil laugh?

April 27, 2011

Timesuck Central.

This is precisely what I DIDN'T need, but weeeeeeeeeeeeee all the way home!We made a mistake, as a family.  This thing -->

(I largely blame the influence of one Scott K. Johnson.)  

Due to the amount of travel Chris and I do throughout the year to support our respective businesses, we thought it would be okay to pick up a tablet. And once the iPad 2 came out, we were like (shrug), "This will help us increase our productivity."

Oh, the lies!!  So far, I have downloaded finger-painting applications for BSparl (she loves them and is fascinated by the colors that pop up on the screen when her finger pokes around), built a small but robust Tiny Zoo (currently, koalas are breeding - OMG I need a life), and am playing several games of Words with Friends all at once.  Productive?  Nope.  

Well, not yet, anyway. Aside from the fun apps and the silliness, I'm looking forward to making this thing useful.  I want to check out the medical apps that I never downloaded to the iTouch (mainly because that device is for my nephew to play Angry Birds on), and whatever else is fun to explore. 

So if you're an iPad user, or an app fan of any kind, what do you recommend?  Any especially snazzy diabetes apps?  Or just plain fun ones that involve cats?  I mean, diabetes?  (Whoops.)

April 26, 2011

Gross Things I Eat.

Growing up, we had these large, potted plants in our dining room, within throwing distance from the dining room table.  (Stick with me - this is an important detail.)  The plants were big and had wide, draped leaves and they made the corner of the dining room look like a veritable jungle.

Also, these suckers were really convenient for hiding food.

When I was little, the "diabetic diet" school of thought was based on the exchange program.  This meant that my meals were structured around my calorie needs and the needs of my (then) peaking insulin doses.  An average dinner would include one meat exchange, two starch exchanges, a dairy exchange, a fat exchange, and a fruit exchange.  (Exchange, exchange, exchange.)  When I was on insulins like Regular, NPH, and Lente, I needed to consume these portions in proportion, or I would end up with a very high, or very low, blood sugar.

So my mother (bless her anecdotal-medical-degree'd heart) would carefully measure out these exchanges and that would be my dinner.  EXACTLY one meat exchange, and those two starches, etc.  She worked very hard to make sure my meals were calculated and well-balanced. 

And in response, I would hide my vegetables - aka "gross things" - in the dining room plants. 

I know she knew I was doing this, because someone was scooping out the discarded broccoli every few days (Maybe it started to smell?  Even the best broccoli starts to smell like fahts eventually …) and putting a little more potting soil in there. 

If my then nine year old self knew what her thirty-two year old self would be eating the "gross things" BY CHOICE, I think I'd hit me in my head.  Because my new favorite lunch snack is a sliced up avocado, sliced up egg whites, and balsamic vinegar dressing.


"EW!" Says nine year old me. 

"Yum!" says older me.  

And way-in-the-future me reads this archived blog post and says "Don't make me turn this spaceship time machine around!  Stop your bickering!"

April 25, 2011

Things I Learned My First Year as a Diabetic Mommy.

Things I learned during my first year as a mommy with diabetes:

  • Not all women with diabetes have c-sections. I did, but it doesn't make me the rule. C-section deliveries are the exception.
  • A pregnancy with diabetes, even well-controlled diabetes, can have its share of complications. This does not mean I failed.
  •  I quickly learned to stash fruit roll ups in the couch cushions for breastfeeding lows.
  • Writing my blood sugar level on the bags of pumped breast milk helped instill the confidence that my blood sugar level didn't affect the quality of my milk.
  • Carrying the car seat against my hip can accidentally bolus my pump.
  • So can sticky little baby fingers.
  • When she has to wait while I treat a low blood sugar, it makes me hate diabetes so intensely that my eyebrows hurt from furrowing them.
  • Test strips on the floor aren't a big deal until she tries to eat them.
  • Bottles of glucose tabs make for the best impromptu rattles.
  • I didn't realize she was able to pull my pump from my hip and crawl off with it until I felt the site pull loose.
  • Between the baby bag, the diabetes supplies, and "regular life" stuff, I am bound to leave something behind. But so long as that "something" isn't me or her, we're fine.
  • While I don't always know the lyrics, I do know the tune. And I'm like the Wayne Brady of makeshift mommy lyrics.
  • I've never, in my life, had such in-depth discussions about poop and blood sugar numbers, all in the same breath.  ("Dude, she's taking a massive crap right now, but I'm 50 and I need to grab some juice.  Can you take this hit?")
  • Going to the beach is hard when you bring two kids under six months of age.  (This summer should be easier.  RIGHT?  Please God.)
  • I wasn't prepared for how sad I would be to pack up her too-small clothes, but I felt so proud to buy her first sippy cup.
  • I've never ordered so much crap online in such a short 365 day span.
  • Going gluten-free for the first year was doable enough to encourage us to maybe aim for a few more months.
  • And in the last twelve months, I've learned to be very comfortable, and unflappable, about my decisions on how to parent my child.
  • When she slept through the night and her diaper was soggy, I thought, "She slept through the night!" and not "Does she have diabetes?"
  • Gluten-free crackers taste nice. Gluten-free pasta is not so nice.
  • Nothing entertains her more than my Dexcom receiver. She likes the beeps, the lights, and the plastic gel case. It is the ultimate tantrum deterrent.
  • Baby Mum Mums are delicious. There. I said it.
  • Working from gave me the pleasure of not missing a moment of my baby's first year, time to safely manage new motherhood and diabetes, and instilled a true appreciation for "time to myself."
  • After twelve months, the laundry is still adorable but the diapers are less so.  (Nothing to do with diabetes.  But her clothes are cute overload in the dryer.)
  • Being her mom makes me want to have the nicest A1C ever, so I can be around to bug her for a long, long time.

My first year as a mom has taught me a tremendous amount - more than one blog post could ever cover - and I learn more about my kid (and my marriage and myself and spit up and toys that require 15 batteries and have a cleverly-hidden off switch) every day.  Also, my daughter and I owe you guys a big THANK YOU for spending the last year answering questions/quelling fears/tolerating emotional outbursts/being kind as I made this transition.

So this is what I've learned.  BUT.  I've yet to learn how to install the car seat base on my own.  Which makes Chris my hero.  :)

April 22, 2011

Earth Day and Diabetes.

Nothing says "Earth Day" like stumbling upon this awesome photo (and caption) on Facebook:

"Using my infusion site protective cap as a guitar pick... total D-rockstar status!"

Jessica writes a blog at J's Adventures in T1 Land, has type 1 diabetes, and is an excellent example of d-cycling (diabetes recycling).  Do you reuse your diabetes supplies in any way?  (Or am I the only one who has used clipped syringes as water guns, glucose tab jars to store whey protein, and pump caps as cat toys?) 

How do you keep your diabetes green?

April 21, 2011

Wait - That's Exercise, Too?

Exercise has been tough to come by lately.  I've had a hard time getting to the gym for a regular workout because of BSparl's schedule, my work deadlines, and the overall chaos of Casa de Sparling.  By the time 7 pm rolls around, the last thing I want to do is skip off to the gym and mess with weights and cardio machines.  Nope.

However, ways of exercising are finagling their way into my day - WITHOUT MY EVEN KNOWING IT.  How am I clued in?  Why, the Dexcom wails alert me to my moments of physical exertion!  And my total daily dose of Humalog is down from 28u to 25u lately. Over the last two weeks, my #sweatabetes hasn't come in the form of formal workouts, but instead random and bizarre things. 

To illustrate:

  • BSparl and I danced our way through an entire episode of The Cat in the Hat, complete with twirling at the "Here we go, go, go, go ... on an adventure!" song part.  You'd be surprised at how much work it is to chase after a little bird all day long, but that kid keeps me moving.  We dance, sing, corral the cats, pretend that we're squirrels ... watching my daughter is the most constant form of exercise I'll ever, ever have.  Kid wipes me out!
  • I spent over an hour each night in the backyard, removing the blasted red mulch from the garden and replacing it with gardening soil and brown mulch.  Back in the day, I would have scoffed at the concept of gardening as "exercise," but damn!  Raking, weeding, digging, carrying heavy bags of mulch and soil, and scoping up the discarded stuff into the clean up bags was murder on my back and arms.  And legs.  But the garden is starting to look good.  And hopefully I'm burning mad calories being all domesticated and whatnot. 
  • In keeping with my Suzie-Sunshine-Domestic-Goddess fakery, I've been working around the house to prepare things for BSparl's big ol' first birthday party.  Even with just our families, it's going to be a sizable gathering.  So Chris and I have been finishing up some last repairs on the house, and these chores are making my blood sugars plummet like I'm spending the afternoon at Target.  Moving things in the garage, cleaning up the office downstairs ... it's all a constant flow of activity.
  • Not to mention the few times I've made it to the home gym, watched some Hulu, and made the ellipmachine my bitch.  (That's formal exercise, but since I didn't leave my home for it, I can't call it a "real workout."  Because, in my mind, a real workout includes beeping my key fob at the gym.)
Exercise is sneaky.  It's not always found clad in yoga pants and a sports bra.  Sometimes it's messy and covered in mulch.  Sometimes it's working alongside small, cat-themed gardening tools that my daughter is supposed to use but I may or may not have used on my own at one time or another (I needed to dig around a very fragile plant!):

CAT GARDENING TOOLS!!  They make everything.  And the little rake thing creeps me out, because the rake spokes look like legs. Spider cat?
(I make these live outside because they creep me out just a wee ickle bit.)

Exercise:  It's everywhere.  Sneaky little pest!  How do you work in your workout without hitting the gym?

April 20, 2011

Guest Post: Type 3 Diabetes?

Today's guest post is from one of my favorite "kid with diabetes" moms - Moira McCarthy.  Moira is a champion for kids with diabetes and their parents, and she's recently joined the blogosphere with her blog at Despite Diabetes.  Moira, in her words, "hopes to be an unabashed voice in the world of working toward a cure."  And today, she's sharing her voice here on Six Until Me.  

*   *   *

Thank you, Moira!Having been in – and quite visibly in – the type 1 diabetes world for a very long time now, it’s hard for me to go anywhere without some kind of D-nection (diabetes connection) surfacing.

A recent ski industry cocktail reception was no exception. The room was full of outdoorsy types. Burly men, women’ with tele-butts, everyone either spotting a goggle tan or envious of those who had one. A friend told me there was someone a simply had to meet: a man who ran a large Nordic skiing operation. But he didn’t want me to meet him because I write a ski column for a daily newspaper or because I work for SKI Magazine. “His wife has diabetes – and she just had a baby,” my friend explained. He went and got the man and introduced us, saying “The baby is two months old now and the baby and the mom are fine.”

Knowing what I know and understanding what I do, I did what came naturally: reached out, gave the man a giant hug and then looked him in the eye and said, “You are my hero. I know what you have been through these last couple of years and I know what you personally did to make this all possible. As the mother of a young woman with diabetes who hopes her daughter some days meets someone like you I just want to say: Thank you.”

The burly man immediately burst into tears. I was, he told me, (a little embarrassed by his reaction; made me think of that Seinfield episode [“What is this salty discharge coming from my eyes?’]), one of the first people to say out loud those words. And while he didn’t want credit (his beautiful daughter was quite enough, thank you), he did appreciate that someone got it. The whole experience had been intense for him, not just his wife.

I tell this story because of the recent push to call those of us in the club I’ve been in for 14 years now – caretakers and loved ones of a person with diabetes – “Type 3’s.” I guess the idea is that we kind of “have” diabetes too. True, it’s with us 24/7. We have to read about it, learn about it, worry about it, battle it, figure it out and sometimes, let it beat us down a bit.

But I’m calling Bull-sh**. I don’t like the term Type 3. I don’t like the idea of us being called anything close to “having” any type of diabetes. Because you know what? As much as the past 14 years of my life have been nearly consumed by this ridiculously complicated disease, there is absolutely no comparison to what it has done to my daughter. And frankly, the idea of “taking” any part of the name seems, to me, somewhat self-serving and whiny.

Here are my reasons:

First of all, whether we parents and spouses and siblings want to admit it or not, we can take time off. Look, I’m a person with absolutely no family help through even the young years of my daughter’s diabetes. Not that my family didn’t care; they did and do. But I’ve never been one of those people with the grandparents who practically live in the house; I never had a family member who totally knew how to take care of my daughter. So it was all on me. But .  . . there was the two weeks of diabetes camp every year when I knew she was safe and I checked out of the diabetes world completely. There were the times I just took a day and went and walked the beach while my husband minded the “diabetes store.” Was it with me always? Absolutely: but not in a way that claimed all my existence. Sometimes I worry that some parents (and loved ones) take too much on personally, and make it too much about them. I remember when my daughter was diagnosed, I said to the endo “I’m going to have to quit my ski job now. How can I travel with this?” To which he said: “You really want to lay that kind of subliminal guilt on your daughter? The best thing you can do for her is LIVE YOUR LIFE. Show her that diabetes cannot completely own anyone. Set the example.” He was, and is, so right.

Second, while there is no question diabetes has etched itself permanently into my psychological and physical being (thank you, diabetes, for the gray hair at 37), in no way has it done that in the way it does to a person with diabetes. My heart may ache sometimes but never will it be actually damaged by the impact of diabetes. I might be tired after a night of crazy blood sugars that concern me; but never will I know what the physical impact of highs or lows feel like. My eyes may be blurry one morning after having to do a check in the middle of the night, but never will diabetes rob be of actual eyesight. In the end, the impact diabetes has on me can be soothed by a long walk on the beach, a support group of good friends who get it, a good hair dresser and – in the case of that burly man I met – a hug and some kind words from a stranger.

Third, I think the whole “Type 3” thing confuses the issue and cheapens it somewhat. For all our hard work on getting the world educated about the difference between Type 1 and Type 2, we’re going to throw another one in the mix? Rather than muddy the waters of public perception, I’d rather clear them up. Do you really want to add having to explain what “Type 3” is to your elevator speech on diabetes 101? I don’t.

I also guess I don’t know why anyone thinks our group -- loved ones and caretakers of people with diabetes -- needs a label. We are who we are. Some of us are warriors in a public way: storming Capitol Hill and demanding funding for a cure. Some of us are master fundraisers who channel tons of money to research. Some of us are quiet, hard-working souls just trying to keep things right on a daily basis for our loved ones. Some of us are burned out sometimes. But none of us “have” diabetes. And if you ask me, if we allow ourselves to be called “Type 3’s,” we are, in the end, letting diabetes have us.

We cannot do that. Because as cliché as the saying is, just like on an airplane, the best thing we can do for our loved ones is take care of ourselves first. Look at that man I met. He was at that party having traveled a few states over for a long weekend away from his wife and new baby, taking a few days away from diabetes to have some fun, let it go and return home refreshed and ready to help his wife with the challenges of nursing and Type 1.

Did getting away from diabetes completely for a few days make him any less of a hero and a man? No more than those poignant tears did.

I say if you need a name, join a group. JDRF. DRI. ADA. Whatever. I just hope we drop this whole Type 3 thing.

*   *   *
Thanks for your perspective, Moira.  What do you guys think of the whole "type 3" thing?  Do you use the term?  Is it on your radar?

April 19, 2011

Below the Line.

I think I know who has finally and precisely perfected inhaled insulin.  No, not a pharmaceutical company - Target.

The photo quality is kind of crap, but I was in my car, my blood sugar was 54 mg/dl, and I was sitting in a sunny parking lot.  Not the most ideal photographic circumstances.  Also, this alt text is longer than the blog post.

What is piped through the air ducts at Target?  What is it that makes me go into that place and immediately my Dexcom starts hollering?  It's not like I'm running around the joint, flailing my arms and burning as many calories as contained in the candy aisle.  And I'm not secretly bolusing, for sport, before I go shopping. 

What gives, Target?  How are you sending me "below the line" so often?  Why do you make me so low?  And how can I replicate your efforts during, oh, let's say a post-Cheesecake Factory lunch?

April 18, 2011

Gluten-Free Birdzone: Now What?

(Alternate tittle:  "Bring out yer bread!")

Now that the little bird is the big O-N-E, we have completed one year as parents.  And one year doing the gluten-free diet with our baby.  This was important to me because I felt strongly about the ties between the early introduction of gluten and type 1 diabetes diagnoses. And after doing some research and discussing this as a family, Chris and I decided to keep our BSparl gluten-free for her first year.

It was pretty easy, to be honest, keeping a little baby off gluten.  (Especially since she doesn't have celiac, so our decision was elective instead of required.) The ease came mostly from the fact that BSparl breastfed for almost six months, and didn't start on solid foods until just after she turned six months old.  All breastmilk and/or formula made for a pretty streamlined food schedule for that first half year.  When we introduced solid foods into her diet, we went with organic rice cereal and formula first, then mushed up fruits and assorted other mushed up items (like avocado and shredded chicken breast) mixed with food pouches like these from Ella's Kitchen. Her diet was pretty mushy for a good long time, since it took about 8 months for her first tooth to bust through.

Once she had some teeth, feeding her was a little easier (if easier = messier), and our options opened up a bit. However, we needed to be vigilant about reading food labels and doing the "Oooh, wait!" to relatives before they'd give the baby a snack.  For the last four months or so, BSparl has been chomping on gluten-free crackers, pasta, and puffs, plenty of fresh fruit like mango, papaya, and bananas, chicken, and avocado.  (She also had her first gluten-free cupcake on her birthday, complete with a messy little fondant bird).  She's drinking happily from her sippy cup, and today she tasted her first popsicle.  (Highly entertaining, watching her little face get all confused by the cold and then elated with the taste.) 

Gluten free bird-day cupcake.
Enjoying her birthday cupcake last week.

But she's still gluten-free, at the moment.  I haven't made the leap to wheat yet, and I'm not even sure how, or when, I should do it.  My research kept talking about "the first year" over and over again, but now that we've clocked in our twelve months, are we supposed to dip her in a pile of mini wheats and see what happens?  When are we supposed to start bringing gluten into her diet, and how do we do it?  All at once?  Bit by bit?  And is it normal that I'm nervous, and very apprehensive to make this change because I'm being inundated by The Thought

If anyone has any information on expanding our daughter's diet to include gluten, I would really, really appreciate it.  I have an appointment with our pediatrician next week, and I am also combing research journals, but I'm mostly clueless.  Has anyone in the DOC done the gluten-free route with their child and then added gluten in after the 12 month mark?  I would really appreciate any links to research, anecdotal evidence, or anything.  I've never done this before and I'm confused.  (Big shock, right?)

Thanks, you guys.  As always, your input helps me make the most educated decisions I can.

(It is important to note that I am not a doctor. Or a nurse. Or a person with any semblance of a medical degree.  What I am is a person who has been living with type 1 diabetes a long time, with a daughter who I worry may have inherited my immune system.  I'm an informed patient who is looking for more information.  So if there is research pointing towards a gluten and type 1 connection, you can bet your ass I'm going to avoid gluten for the first year, as advised.  It's not like I forbade hugs for a year.  Just Cheerios.  ;) )

April 15, 2011

OMG Twelve.

To my littlest friend,

One year ago today, the best little write-off ever was born.  (Happy tax day AND birthday, Birdy!)  No ... okay, I'll be serious.  Because, as we know, your mama is totally serious.  You and I have never had burping contests. Nope.

Ahem.  So yes, a year ago, you were born.  You came out after a short but tough eight months and one week of pregnancy, the first scheduled c-section at Beth Israel that morning.  Type 1 diabetes, Factor V leiden, retinopathy, pre-eclampsia, and hospitalization tried to shake our determination, but you and I held steady.  And the moment you were born, your cry filled that operating room that once held 14 plus people, but in that moment, just held you, me, and Daddy.

Smiling when we went to the zoo last week.

I knew life with you was going to be so different and amazing, but I didn't realize how profoundly you had changed me until I caught myself talking to you about how I cannot stand the Charmin bears because they show their toilet paper bits to television viewing audiences.  And you giggled in agreement.  Or when we sang the song about "Fat Bird the Clown (FBTC)" in the grocery store.  And then danced while daddy juggled lemons.  You have given me the confidence to be a silly mom in public, and you make me feel like even my non-rhyming, makes-no-sense lyrics are worth singing.  You make me feel like I'm doing something very, very right.

Opening some early birthday presents from our friend Lindsay!

Birdy, you amaze me.  I love watching you learn how the world works, when your little brow furrows as you try and figure out how to stack the blocks or open the cupboard or sneak up on the cats without them noticing.  (They always notice.)  We get to watch you discover how words are assigned to things, and what sounds fit where.  You've started pointing at things you recognize, babbling words like "birdy," "kitty," and "mama."  Your voice is high and squeaky, and your giggle is cut from the same vocal cloth. 

Baking cupcakes on her birthday-eve.  :)

I want to tell you how much you mean to me, but there aren't the right words for this yet.  I want to tell you that i would do anything for you, and would sacrifice my entire being to make sure you are always safe, but it never feels like enough.  I love you like I've known you all my life.  Because, somehow, I have.  You've always been what I've wanted most, and now that you're here and I can hug you, my life feels better.  Fuller.  Like that spot was filled that I didn't even realize was empty.

I love you, my baby birdzone.  You show me that there is plenty to smile about in the world. 

Happy first birthday. 

Love,
Mommy.

April 14, 2011

Webinar'd!

Six Until Me is almost six years old (and I plan on celebrating by having cake with Sprinkles and Cheesels), and over the last five years or so, I've taken to blogging almost every week day.  (That's a lot of crap about Siah Sausage, for sure.)  Sometimes it's easy to come up with stuff to say and ways to help raise awareness for diabetes, and other times I'm overwhelmed by what I want to say, how i want to say it, and finding alt text for a photo that makes me giggle.  

Which is why I wanted to let you guys know about a webinar that the amazing editorial powerhouse, Amanda Dolan, is putting together over at WEGO Health.  Amanda and I work together on some WEGO Health projects, and I'm really excited to see this webinar gaining momentum, because the whole point is to help health bloggers raise their voices more effectively. 

Holy shit, that's a lot of words in one small space!And damn if she doesn't also have a really awesome panel of ladies to offer insights.  (Including my favorite conference wife, Jenni Prokopy from Chronic Babe, and also Erin from Healthy, Unwealthy, and Wise, and Lisa Emrich from Brass & Ivory.) From the WEGO Health blog post"Whether you’re just setting sail on the vast ocean of patient activism through blogging or have created your own advocacy island – this webinar will be fun and educational for all."

If you're around April 21st at 8 pm EST and you'd like to hear from Jenni, Erin, and Lisa (and Amanda!), sign up for this webinar!

And now I'm off to finish baking these birthday cupcakes for a certain someone ...

April 13, 2011

Mousercise!

Sometimes it's a 33 minute workout on the treadmill at the gym.  Other times, it's an at-home workout on the elliipmachine and an episode of Mr. Sunshine (which I watch only on Hulu and I keep wishing will get better but it doesn't and I'm all "awwww, Chandler"). But on rare occasions, my sweatabetes workouts take place in my kitchen.  While trying to wrangle in a teeny, brown field mouse named Cheesels.  (Pronounced "cheese-els."  As in "OMG there's Cheesels!")

Our house has a nice yard, and with it comes a bevy of critters.  We have squirrels that appear to be planning some kind of coup, dancing madly in the backyard and running at a break-neck speed with nuts in their cheeks.  We have the neighborhood cats who are sometimes on our back deck, making faces at our cats and flaunting their vast knowledge of the streets.  And apparently, we have adorable field mice that want to have breakfast with us every morning.

Or at least we have this one, really resilient field mouse that refuses to vacate the premises. 

Our first line of defense was our arsenal of cats.  Three cats, you'd think they'd tap their instincts and make quick work of our little Cheesels.  Nope.  The first time the mouse made an appearance, all three cats were lounging in another room playing Risk.  The second time, we actively put our most wily cat in the mouse's direct path, but Prussia simply licked her chops and strolled off. Our third attempt involved a humane mouse trap that had intentions to trap the mouse for a later, live release (but instead appeared to simply offer snacks to our squatter, and offered no actual 'trap').

But the fourth time Cheesels popped his little mousy head out was when Siah was on watch.  And Siah beat the mouse senseless. 

"Holy crap, it's like a mouse murder scene in here."  Fuzzy brown fur littered the floor.  "Surely this thing is dead now."

But nooooooo.  Because yesterday, as my mother was hanging out with BSparl and I, we heard this little scuttling sound from the kitchen.

"Mom, you stay here with the baby.  I'll go investigate.  I think it's Cheesels."

"Okay," she said.  (And I love that no one questions the fact that we've named our rodent nemesis.)

Do NOT eff with this mouse.  He will cut you.I slowly moved into the kitchen, broom in hand, to see Siah stalking something underneath the kitchen table.  Upon closer inspection, I saw our mouse friend, wielding whiskers and a switchblade.  And Siah looked positively elated with her new friend.

"Ahhhhhh!!  Ooooooh!!!!"  I yelled mostly unintelligible words and swatted madly at the mouse, who scurried away towards the stove.  

"Come back here!  Ahhh!  Get away!  Go outside oh my god get into the trap! Die!  Get out!  Siah! Kill this thing! Be a cat, damn it!"  I knew I was sending this mouse mixed signals, but I just wanted it the eff OUT of my house.

My mother came out of the baby's room, looking determined.  "Give me the broom.  You go in there with the baby.  I'll get this out."  She seemed ... strong.  Ready to battle the mouse.  So I handed her the broom and went in to comfort my startled, non-mouse-fearing baby girl.

What happened next was an awkward and loud dance of mother, daughter, mouse, and broom.  Yelling, "ooooh'ing," jumping on chairs and freaking out while trying to open doors to usher the mouse outside ... the calories burned must have been tremendous.  It was the most graceless but direct form of mousercising my kitchen has ever witnessed.

"Did we get him?"  we both said in unison, looking at the open door and not hearing any telltale squeaks.

"I think I shoved him out with the broom.  He's gone.  We're all set," my mother said, brandishing the broom like she was finishing a crusade.  We were soothed by our conviction that we'd indeed solved the problem.  The Dexcom wailed from the kitchen table, confirming that my mousercised sweatabetes was effective.  (Oh exercise, how I find you in the strangest of places.)

My mother headed home.  BSparl was snuggled and tucked into bed. Chris wasn't expected home for a few hours.  So I settled in at the kitchen table to finish some paperwork.

Until.

I heard the scuttling of little feet.  And I felt something staring at me. I turned around, slowly, to see Cheesels standing on the top of the stove, little paws raised in victory and holding my wallet.

I'll get you next time, Cheesels.  Next time.

April 12, 2011

An Annoyingly Addictive Game.

I usually avoid video games because they suck me in and I get addicted.  (See also:  King's Quest games from back in the day.  But don't see also: Angry Birds because my mother is so actively addicted to that game that I want her to dress up as an Angry Bird for Halloween ... or maybe just for breakfast.)

Knowing my propensity for playing, I was reluctant to click on the link Abby posted on my Facebook wall with the root URL of "addicting games."  "I do not need this," I thought, and then proceeded to attempt to beat the first thirteen levels.  Because I am a mega nerd.

But it involves sugar!  Sugar, Sugar, to be exact.

I made it to level 13.  Color me a sugar-free toolshed!

Abby justified it for me:  "It's like the lines are insulin, and they guide [the sugar] into the cups, which are our cells." 

"This is for work," I mumbled to myself as I fiddled with the game.  "Work, I tell you!"

Don't blame me if you find yourself trying to beat at least a level or two.  And if you end up wasting more than an hour, blame Abby.  (And if you can beat level 14, let me know how you did it!  I mean, good for you!)

April 11, 2011

Guest Post: Setting Sail with Diabetes.

Happy Monday (if such a thing exists)! This morning, I wanted to introduce you to the captain of the sailboat Wondertime - Sara.  Sara has been living with type 1 diabetes since 1986, and she is planning a two year sailing trip with her husband, her two daughters, and Xena the sailing cat onboard. Take it away, Sara!
*   *   *

I was diagnosed with type I diabetes on October 11, 1986 at the age of 11. In October of this year, my 25th living with diabetes, I will sail across the US border into Mexico for several years of traveling with my husband and two daughters aboard our sailboat Wondertime. It will be a time of celebration for sure as our years-long dream is realized even with the challenge of living with diabetes.

My husband Michael and I have been sailing and living aboard various sailboats together since shortly after we first met in 1998. For our honeymoon in 2000, we spent three months sailing up to Southeast Alaska and back to Seattle. Two years later, we sailed down the Pacific coast to Mexico where we spent seven glorious months exploring this warm and delightful country by sea.

Sara and her gorgeous family!

During our first cruise to Mexico, we observed families sailing with their extremely bright and joyful children and simply knew that one day we would do the same. Our first daughter was born in 2006 (pregnancy by far my biggest challenge with T1!) and our second daughter was born in 2008. Soon after our family was complete, we sold our house we’d settled down in for several years, purchased another boat and soon moved aboard. This summer, we will finally set off on our dream of sailing as a family for the next two years, exploring Mexico and Central America, and if we are still having fun, the South Pacific islands.

Of course, there is that diabetes thing.

When I tell someone that I live on a 38 foot sailboat with my husband and two young daughters, at the same time dealing with the day-to-day rollercoaster of diabetes, they often are shocked that we are able to make our life work. Frankly, so am I on many days. If you have diabetes, or love someone who does, you know how all-consuming this disease is. It truly affects nearly every moment of my life in some way. But having close to 25 years under my belt, it is all I know. Living with diabetes makes everything more difficult, whether it is going outside for a walk, shopping for groceries, caring for children, or simply eating pancakes. It comes along with me in everything I love to do, including sailing.

There are many days when I want to throw in the towel, and just live a life that is more routined, with a house and garden and a 9-to-5 job. Diabetes can be so unpredictable that it certainly helps when life is more so. But after all these years I know that this simply is not who I am. I adore boats, sailing, the sea and communing with all the fascinating characters who also spend their lives afloat. I love experiencing the wonder of the sea right alongside my two- and five-year old girls. As one of my favorite sayings goes, it’s not easy, but nothing worth doing is.

Traveling with diabetes is a huge challenge in itself; I will be spending time both at sea and in port. Just like life ashore, I will have to adjust my management tactics regularly, and take it day by day, meal to meal. Cruising by sail is physically active with the sailing of course, but also lots of walking and hiking and taking public transportation. I plan to carry jars and jars of glucose tabs with me. Also coming along will be a year’s supply of pump and CGM supplies (am I excited to have my Dexcom along with me this time!) I’ll check in with my local doctors regularly and visit them when I am visiting local family next year. The best part will be my having my husband with me full time to help; he is truly the most important member of my diabetes team.

I recently asked myself an interesting question: do I sail in spite of having diabetes or because of it? Truly, I think it is both: one of the many beautiful things diabetes has taught me is that life is short and precious and must be spent doing what you love, today.
*   *   *
I love this, and I really love hearing from PWDs who are doing exactly what they want to do, despite any diabetes hurdles that may present themselves.  Thanks for your story, Sara!  Have any of you guys taken extended trips with your diabetes on board?  What are you doing in spit of diabetes, or maybe because of it?

And if you'd like to submit a guest post to SUM, feel free to hit up Abby at abby (at) sixuntilme (dot) com.  She's good with email, unlike me, who tends to suck it up a bit.  :) 


April 08, 2011

Scuffed Pump.

If there's one thing that takes a consistent beating as a result of diabetes (other than my internal organs, of course), it would be this little guy:

The wear and tear on this sucker is tremendous.

My insulin pump.  This is a part of my diabetes management plan 24 hours a day, seven days a week.  Very rarely to I take "pump vacations," so for the most part, I'm connected at all times.  On an average day, the pump endures sleeping in the bed with me, the baby's wake-up routine (which includes her grabbing the pump site, regardless of where it is located), playing all day, working, cleaning the house and my body, conference calls and email blitzes, the gym, routine awkwardness, et cetera ad nauseum. 

Which means that this expensive, life-changing little gadget gets battered around on a regular basis.  Apparently, these things are built to be durable (to a certain extent), as I only cracked my Minimed pump once, and I haven't injured this one irreparably yet.  (Despite the months of clumsy, pre-eclampsia pregnancy hands during which I dropped everything I touched.  I was like Gravity Midas.) But recently, I scuffed into the door jamb, and was left with this new, giant white scuff on the screen. 

So today's project is replacing the lens film.  Because these war wounds aren't the prettiest.

What's the worst you've done to your diabetes device?  Have you ever almost dropped it in the toilet?  Sent it flying when you made the bed (or am I the only one who has done that)?  Launched it accidentally into a plate of food you were eating (not me, either :: whistles ::)?  I'm not the only one beating the crap out of this thing, am I??

[Animas disclosure]

April 07, 2011

From Abby: SugarStats.

I suck at logging my blood sugars.  I've tried so many times to get into a good groove with keeping tabs on my numbers (I even had a logbook with logs on it), but the only time I was really successful was when I was pregnant, and I used the "Kevin" spreadsheet. 

But thankfully, logging is possible.  And Abby has proven it.  She's been using an online service to track her numbers, and she's sharing her experience with it today.  Get along, little Loggy.

*   *   *

Old timey log booking.  With old timey loggers.  You can tell it's "old timey" by the sepia tones.  Duh.Logging. It’s a scary word. It could mean a dangerous occupation of cutting down giant trees and magically turning them into paper products (I have no idea how that works). It could mean using a tiny little book filled with tons of boxes to write down lots of numbers that most 13 year olds [Editor's note:  Or 32 year olds] make up two hours before their endocrinologist appointment (been there, falsified that).

Or it could mean SugarStats.

(Sidenote: I use a Minimed pump, so my endocrinologist can download two weeks worth of numbers/insulin when I go to her office, but frankly that’s not really good enough for me. I want to see what happens the other 2.5 months with my diabetes, so I can make changes, or ask her to make changes if necessary. And yes, I’ve used the CareLink program, and hated it.)

I found the SugarStats website from a camp friend who posted it on Facebook, and I decided to give it a shot. I have to admit at first I was very overwhelmed. The site is kind of confusing to navigate (although, I’m fairly un-skilled at such technology things. See: my computer is from 2005 and my phone doesn’t have the internet.) but once I got signed up and started, it wasn’t so bad.

The actual process of logging the numbers is a little time consuming, but they have an “add multiple entries” option which is super sweet, because you can list all your blood sugars at the top, then all of your insulin/medications at the bottom on one page. Easy-peasy.

On day two I was a little annoyed at how many times I check my blood sugar and take insulin, since now I have to type that all in. Fifteen boluses per day is probably a bit excessive. And then on day three, I began to love this wonderful website.  Mainly because I have a graph proving that I really am working hard and it’s paying off.  [Editor's note:  Visual aids for the win.]

Now this is where I might lose you, but stick with me; I'm going somewhere with this.  At the moment, I consider myself in pretty good control. My last a1c was 6.7, I rarely go over 200 mg/dl … I’ve hit kind of a good-rut with basal rates and insulin-carb ratios and such, and I thank the dia-gods daily for this success. That being said, I’m still incredibly pessimistic because of years of not-so-successful control.

My endocrinologist actually said to me, “You’re being too hard on yourself! You’re doing a good job!” at my last appointment. And this is where the logging website comes in.  SugarStats came into my life at the best time possible. I can now look at my numbers, see that graph, see the color code, and realize that I am doing a good job at managing my diabetes. I have the proof right in front of my face.

But since I’m sure my pancreas is reading this, tomorrow my basals will stop being perfect, and I’ll start seeing crazy graphs, and I’ll get disappointed, and my toes will fall off, etc. However, since I’m logging, and have had this stretch of success, I’ll hold onto hope. I now have one more awesome tool in my bag (tool bag? ... of diabetes supplies? … okay, but only if it's animal print and sparkly) to help me get through the rough times.  And to help me celebrate the good times.

*   *   *

Are you on SugarStats?  You can follow Abby, and make logging a steady part of your diabetes diet.  (I'll give it a try, but I can't make any promises.)  Oh, and one last, important note:  No one asked Abby to write about this.  SugarStats didn't ask or pay ... they're not even aware of this post until ... NOW. 

April 06, 2011

Progress.

"Everything looks good.  No progress is good, actually.  Means your eyes haven't deteriorated any further in the last five months."  Dr S, my eye doctor at the Joslin Clinic, ran her fingers across the keyboard, typing notes into my online file. 

"So it's the same as back in November?  When I moved from mild to moderate retinopathy?"

"Right.  Still non-proliferative, but the same.  Not worse, by any stretch.  We're working with a few spots, a very small bit of leakage, but nothing I'd recommend treatment for, other than watching it closely."

I let out the breath I didn't realize I was holding.  The fluorescent bulbs in the room were bright and ricocheting off the white walls, making me feel like I was in an avalanche of light.

"We do want to check on one thing, though."  She turned her chair towards me.  "There appears to be some swelling of the optic nerve.  And I'd like to have that checked more precisely with the OCT test."

I looked over at the eye chart on the far wall.  When I had first come into the room, I wanted to go over to the teeniest line and commit it to memory, so I could recite it at will.  "SNDRZ," I'd say, and they'd cancel all other tests that day, in recognition of my clever eyeballs. 

"Okay.  Was there swelling last time?"  I couldn't remember it being mentioned.

"Yes, it's here in your chart.  And from what I can tell, it's still present.  But my measurements are subjective, and I'd like to run a more precise test, so we know exactly where we're at with this.  The test is really just another picture of your eye; it's not painful."

"I can't argue with that.  So sure, let's do that test."

I went back into the dilation waiting room to be called in for the OCT test.  The lights were dim and a large television displayed HD images of starfish regenerating lost limbs as they crept along the ocean floor. 

"The starfish reaches out with the limb that is still growing back.  It remembers what was once there and what will be there again," Leonard Nimoy narrated.  I pictured my eyeball, crawling across the ocean floor, trailing its optic nerve in the sand.

"Kerri Sparling?"  The eye photographer (what is his official title?) brought me into a room.  "Just rest your chin here, and stare straight ahead at the X.  I'll tell you when you can blink, and we'll grab a few images of those eyes, okay?"

"Just look at the Space Invader thing in there?"

He laughed.  "Yup, right at him." The OCT test was completed in a matter of quick clicks, and I returned to the waiting room to wait patiently for my doctor to review the results with me.  

"Kerri?  Come on back," Dr. S said, holding computer print outs in her hand.  The office door shut with a snap, and we stood in the middle of the room, crowding around these papers like kids with a treasure map. 

"This?  Is your optic nerve.  See how it's thick on both sides and has that dip in the middle?"  She pointed, and I panicked.

"Should it have that!?"

"Yes, it's exactly what it should have.  There isn't much swelling at all.  Actually, there's barely any, which is why I wanted you to have this test in the first place, so we were measuring precisely and not panicking preemptively."  She smiled warmly.  "Everything looks good.  Let's get together again in four months, okay?"

Flowers are good for these kinds of posts, because pictures of eyeballs are nasty.

"Sounds great."  I went to get the door, but turned back to her.  "So my eyes are okay?  I mean, not perfect and they still have the moderate retinopathy and all that crap, but there's nothing to panic about, right?  I can hold steady and relax about this a little?  You said no progress is a good thing, right?  I tend to freak out.  Does it show?  I bet it shows."  The incessant questions spilling from my mouth and my freakishly-dilated eyes probably painted me a bit ... off.  

"You are fine.  Go home and enjoy that first birthday party.  I'll see you in four months."

These appointments are hard for me to follow through on, for a dozen different reasons.  But one of the big reasons is fear.  Sometimes I want to go full-on ostrich about this whole disease and pretend it's not happening.  Weird thing is, I always feel better after I know where things stand.  Even if the news isn't always the best news.  I'm learning to roll with it.

And that's progress.

April 05, 2011

Be Your Own Advocate.

With all these diabetes blogs and fundraising walks and keynote speakers and advocacy unicorns, there's a lot going on in the world of diabetes.  Jumping into a diabetes advocacy role may seem as daunting as being a Yankees fan when you're the editorial assistant to a die-hard Red Sox fan (hi, Abby).  But being an advocate for diabetes doesn't mean you have to blog or speak at events or raise thousands for walk teams.  You can raise a lot of awareness in what may feel like the smallest of ways, but can make a difference for just one person.  And one is all it takes. 

This month's Life, Uninterrupted video is about being your own advocate.  And it features Sprinkles.  Because unicorn puppets have a place in this, too.  ;)

April 04, 2011

The Power of Waterproof.

Going fishing for a delicious ... pump?When my friends and I were on vacation last week, our goals were to do three things:  hit the beach, eat countless times, and enjoy the fancy swim-up bar.  Armed with my insulin pump, my Dexcom, and my NurseBestFriend (who is quick with a lancet and also to jump over any bar to grab orange juice, should the need arise), I was ready to participate in all three things.  

For the beach, my pump remained attached at all times, except when I was in the ocean for a quick cool-off.  My moments of disconnect were very brief.  If we were walking around, I kept it clipped to my bathing suit bottom with the tubing tucked as best as I could manage.  (Some people stared.  One woman asked me, point blank, "What the hell is that?"  "An insulin pump."  Silence, and a bit of a dirty look.  So I responded, louder:  "It's an insulin pump!  That's what the hell it is!"  And smiled.  She didn't.  Moving on …)  Staying connected on the beach helped me keep track of things, and the pump site and Dexcom sensor create some really interesting tan lines.

For the restaurants, the pump did what it normally does: sits either clipped to my waistband or stuck in the front of my bra (a la 'disco boobs').  Bolusing for meals was pleasantly discreet because of the remote option, so my main concern was calculating carbs.  (Which means I SWAG'd the hell out of this vacation, yet only had one high over 225 mg/dl and one low under 45 mg/dl.  Not too shabby, considering.)

But the swim-up bar at the pool gave me pause.  How was I going to hang out with my friends without disconnecting my pump for an extended period?  Also, was I just going to leave my expensive piece of medical technology just sitting unattended on a pool chair, waiting for disaster?  And if I decided to have a drink (and they were all the frozen, high-sugar kinds of drinks at this particular bar), how was I going to bolus without retrieving my pump?

NBF came up with an excellent plan:  clip the pump to the back of my bathing suit top, right at the neck where the halter tied.  This way, it was out of the water, shielded by my ponytail, but still accessible and safe. 

"Because your new pump is waterproof, right?"

"Right. So long as I don't go deep sea diving or something."

And then we both thought of the time I was in St. John with Chris and I ran screaming from the water because some kid saw a tiny octopus waaaay off shore.

"Yeah, no chance of that," she said.

Despite the fact that an older woman asked, "Is that the most high-tech cell phone EVER?" and a drunk 18 year old boy exclaimed, "Yo!  You love your cell phone a lot!", no one paid any mind to the insulin pump at the nape of my neck.  Mango margarita in hand and a blood sugar meter well within reach, I was able to hang at the bar, on vacation, with my girl friends without letting diabetes make an awkward mess of things.

NOTE:  This blog post does not advocate drinking.  It doesn't advocate pumping insulin.  It also doesn't advocate mango margaritas, swim-up bars, or bathing suits.  This is just a post about a vacation, and the decisions I made for myself while on said vacation.  This is not medical advice. It's a disclaimer in italics, advising you to make your own decisions.  Because following my advice is sure to lead to bad things, anyway.  ;)


[Animas disclosure]

April 01, 2011

Diabetes: The Acrostic Poem Version.

Penning up a few posts for April.  Because I have no life.  :)

The crew at WEGO Health is hosting a Health Activist Writer's Month Challenge (HAWMC), similar to the NaBloPoMo of November.  Can we do 30 health posts in 30 days (and plan a first birthday party!)?  I'm trying to complete this challenge, and thankfully, I've got a pile of prompts to keep my brain on shuffle.  Today's prompt is "Write an acrostic poem for your condition."  Don't mind if I do!

D I A B E T E S
An acrostic poem.  Boo yeah.

Diabetes is my disease-ee.  I live with this mess every day.
I don't always know how blood sugars will go, but try to make things go my way.
A big misconception about type 1 conception is that to sweets I must be addicted.
But it's luck, a full moon - this thing's autoimmune, and its cause can't be simply predicted.
Either way that you slice it, type 1 is not nice, it's a serious health condition.
There isn't a cure, and it's chronic, for sure, with no hope for a break or remission.
Each day and each night, we continue the fight, for our health and our rights and our lives.
So today, when you see a PWD, be sure to give them a high five.

Visitors since November 7, 2005