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November 30, 2010

Twihard.

Vampires are like in now, right?  Books, movies, TV shows, endless streams of merchandising ... vampires are cool.  (Unless they're staring into your bedroom window from your backyard, in which case, that's creepy and maybe it's best to leave vampires to fictional tales.) 

But what about vampire cannulas?  Like the kind that work just fine for the first 36 hours of an infusion set but then go to complete crap and end up sore and stinging and you pull it out to see the cannula crammed with blood?

Team Edward or Team Jacob?  I don't care so long as the insulin gets in their correctly.  Nerd.

Oh Edward.  Oh Jacob.  What's the deal, kittens?  Why are your vampire people messing with my insulin pump?  Unless I get the glittery skin and the whole "live forever" thing, I'm not excited about these blood-filled cannulas.  They screw with my boluses, they muck up my basals, and they make for very messy post-prandial blood sugars. 

November 29, 2010

Late: Special Sib of a D-Kid Day.

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

Special Sib of a D-Kid Day!  (Was yesterday.  Sorry for being late!)

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

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

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

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

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

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

November 28, 2010

Gadget Heaven.

Gadgets rule my life these days.  There's the baby video monitor.  The laptops.  The insulin pumps and the Dexcom.  Cell phone.  The weird little white noise machine we bought to help keep the baby from napping in silence.  These are amazing bits of technology that I rely on, in one way or another, every single day.  I love gadgets.  I'm a total nerd and I love things with charger cords and little buttons and beeps and boops.

Which is why I'm becoming more and more smitten with the idea of this thing:

Coffee?  Keeps gadgets going AND me!
 

Thank you, Red Envelope, for showing me that "coffee" can indeed power everything.

November 27, 2010

Saturday Snapshot: Red.

Between Black Friday and Cyber Monday? 

It's beginning to look a lot like cute.

Tutu Saturday.

November 26, 2010

Guest Posting At Ninjabetic.

Kerri and George, looking extremely serious and talking about how to bring about world peace and a greener planet.
While the ninja's away, the Kerri will guest post?

The Thanksgiving holidays are still going strong, so today is a good day to point you over to George's (aka "Uncle Ninja") blog, where I'm happy to be guest posting.  

I hope everyone is enjoying the long weekend!

November 25, 2010

Happy Thanksgiving!

Gobble gobble ... but don't gobble crayons.  They don't taste very good.

We went from one turkey to two turkeys, and now we have a third little bird.  Surprisingly, she was very tolerant of having her hand traced, and she only tried to eat the crayon three thousand times. 

Happy Thanksgiving from The Sparlings!

November 24, 2010

Feeling Thankful.

Tomorrow is Thanksgiving here in the States, and I'm feeling pretty thankful.  While tomorrow is reserved for turning hand tracings into turkeys, today is a good day to highlight what I'm thankful for this year:

I'm thankful that we have a backyard that the cats can go crap in, because I was tired of cleaning that litterbox.  (And I'm also secretly glad that our neighbors have a ridiculous cat that comes over and starts trouble with ours, because when they pile into the bushes out back and cause the shrubbery to vibrate with their Andy Capp-style battles, it cracks me right up.)

I'm thankful for our family and friends, who have helped Chris and I adjust to our new lives as 'parents' and who make "home" a place that matters.  We're so glad to be sharing this chapter of our lives with the people and in the places we love the most.

I'm thankful for having good enough health to take it for granted, and to actually have the luxury of feeling frustrated when I'm "sick" because it's such a foreign concept.

I'm thankful for the wonderful work opportunities that have come up in the last few years, specifically for the companies and organizations that have embraced the voices of patient advocacy and who have decided to become part of the conversation.  

I'm thankful I have an insulin pump and a continuous glucose monitor that can help me make sense of the holiday meals.  Also known as:  Pie?  Yes, please.

I'm thankful that the lady across the street doesn't judge me when I wander in the front yard to check the mail, clad in workout clothes, slippers, a sloppy ponytail, usually with the baby strapped to the front of me a la Bjorn, my cell phone secured to one ear, pump tubing swinging in the breeze, and an army of cats weaving in and out between the maple trees.  She must think I'm a work-from-home crackhead.

I'm thankful that the Internet has brought a group of fellow PWDs into my life, and that I'm healthier and more informed as a result.  To boot:  I've made some very close friends through these bloggy blogs, and I'm grateful for their friendship every day.  Life is good when you're surrounded by those who don't make their own insulin. (And let's not forget that I'm also thankful for Abby the Person, who already rocks.)

I'm thankful for my husband, who is my best friend, my partner in parenting, my editor, and remains my hero.  And I'm thankful for my healthy and extremely happy baby bird, who wakes up every day with a smile, and helps me to do the same.  I didn't realize how much I missed her until she arrived.

And with that, I'm thankful for video:

November 23, 2010

A Swiftly Failing Body.

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

Until about three weeks ago.  

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

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

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

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

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

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

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

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

November 22, 2010

Expanding.

Abby the Person(No, this isn't a post about how I haven't been able to get to the gym, thanks to Chris's travel schedule, a lack of BSparl babysitters, and oh yeah, that rib I cracked while coughing for the last two weeks.  More on that later, but just for now, ouch.)

Because I am a fan of full disclosure and all that fun stuff, I wanted to let you guys know that I've sort of been losing my mind.   Life is full of good stuff, but insane stuff.  Between taking care of BSparl, my husband and I both running businesses from our home, and the regular ebb and flow of family and friends, time is tight these days.  I absolutely love being busy, but I hate falling behind on things.  And I've definitely been falling behind these days.

I needed to be able to count on someone for help here and there, and once again, the magic of Clara Barton kicked in. 

Thanks to a twist of fate that introduced me to Abby over the summer, I'm very happy to say that I've tricked her she's decided to come on board as part of my growing, happy mess here at SUM.  Abby will be helping out with some of the techy things (hello, badly-needing-to-be-updated blogroll) and helping to streamline my ragtag list of editorial needs.  Basically, she's going to help me retain the few shreds of sanity I have left.  And I am forever grateful.

So welcome to the chaos, Abby!  I'm very proud to have you on board, and I'm excited to be working with you! 

(And no, having an EA that shares a name with my cat is not a coincidence.  It's totally on purpose.  Fortunately, I do not know anyone named Siah.)

November 21, 2010

Sunday Snapshots: BAM! POW!

BAM!  POW!  BURPCLOTH CAPE!

There's nothing more fun than playing BatMom and BatGirl. (And yes, that's a burp cloth as a cape.  What?  BAM!  POW!  WALDORF!  STATLER!)

November 20, 2010

Linked!

There are a few new columns up at Animas, and I wanted to share the links with you guys.  Because that's what happens during NaBloPoMo on the weekends - you post links to articles and photos of cats shoved into bananas. Like you do.

First:  Links! 

"For people who aren’t living with diabetes, National Diabetes Month is a time when the health focus of the company is turned towards diabetes. Public relations companies send out their press releases about the “newest treatment for diabetes” or “a food that can help you get your blood sugars under control,” and news media outlets run their somewhat generic segments on diabetes.

And for the thirty days of November, everyone is tuned in.

But for those of us living with diabetes, this is just another month. Because we’re living with diabetes all year long."

- Read the rest of Raising Your Voice for Diabetes Month.

"This year has been one of incredible change for me and my family, so I thought it was fitting that I give thanks to some of those people who have been part of this wild ride towards motherhood. You know, as part of Thanksgiving. (Puns are fun.)" 

-  Read the rest of Thanks.

And second:  Banana Cat.

STILL makes me laugh. 

There you go. 

November 19, 2010

The Friday Six: Six Photos from the Discovery of Insulin.

Twenty four years ago, diabetes became part of my life and with it came these vials of bandaid-scented insulin and a potluck of syringes.  Diagnosed in 1986, I came in just as at-home blood sugar monitoring was becoming common and well into the age of disposable insulin syringes.

What I didn't realize was how different life would have been, were I diagnosed sixty-four years earlier.  How my life wouldn't have had nearly the quality it has now, nor the length.  Because if I were diagnosed sixty some odd years earlier, I wouldn't have had access to lifesaving insulin. 

Insulin is not a cure.  That's for certain.  But it is a way of keeping myself alive, until such time that there's a better option.  (See also: hurry up, researchers)  While I was in New York this past weekend, I had a chance to check out the Breakthrough:  The Dramatic Story of the Discovery of Insulin at the New York Historical Society with some of the local diabetes crew.  (Thanks for arranging the guided tour, Allison!)  And it really was incredible to see just how far we've come in such a short time. 

Here's a few thousand words about the exhibit:


This is a shot of a boy before he had access to insulin and then an "after" photo, where he happily describes himself as a "little fat boy."


A quote from Mary Tyler Moore about how diabetes becomes just part of the fabric of our lives.  (And no, that is not a plug for cotton.)


I thought this photo (of a photo) was amazing, because it's a pile of dog pancreases in the background, and then the resulting vial of insulin in the foreground.  Yes, that's how many dog pancreases it took to score one vial of insulin back in the day. 


One of the first insulin pumps.  Wicked old school.


And one last shot of a very old insulin pump.  (I wonder what the "H" stood for - "Hug-a-Diabetic?")

If you're in the NYC area and have a chance to check out this exhibit, I highly recommend it.  It's amazing to see how far we've come.  (And for those of you keeping track at home, the sixth photo is from earlier in the week, of the meet up group!) 

November 18, 2010

Seven.

Dear Birdy,

Happy seven month birthday! (Late by a few days, but who's counting?  Oh yeah, me.)  Thanks for being my best buddy.  You amaze me because every single, solitary morning, you wake up grinning.  And not just grinning, but thumping your fleece-clad feet against the crib mattress every morning like a joyous mermaid.  I'll admit it - I'm jealous.  You are filled with some serious joy every day.  ("I'll have what she's having!")  I don't know what's put you in such a good mood every day, but I'm glad you are a happy little bird.  It makes the few hours of sleep I'm getting feel a little more powerful. 

Your physical changes are happening every few days, and I'm afraid to literally blink for fear of missing something.  In just the last two weeks, you've started to sit up on your own, creep forward and backward on your tummy, and pick up blocks with both of your hands. It's like you're figuring out that you have the power to command your body to do things, and you aren't afraid to explore that power.  Like your repeated attempts to roll off the changing table.  Or the way you raise your arms in the air and yell happily, like Baby King Kong.  Crawling is coming soon - I can feel it - and after that, all hell will break loose.

Seven giggly months old.
Seven giggly months old

I love the personality that we can see developing in you.  You are a really agreeable little mess, and your joy is contagious.  It's fun to watch you taste new foods for the first time, or to knock over the tower of blocks.  (I think I'm creating a monster, though, because I'm encouraging you to destroy something I'm building.  This will eventually backfire on me.) We read books, we do goofy dances, and sometimes we let you pet the cats.  ("Nice kitty" isn't coming naturally to you.  "OMG KITTY!! YAAAAAAA!  BABY SMASH!" seems to be more your instinctive response.)  You've also discovered that your mommy is wired, and tugging on the tubing of my insulin pump is your new favorite sport.

Teeth are on tap.  It's obvious.  Aside from the incessant drooling and putting your toes in your mouth every change you get, you're gnawing on everything.  You like to read your books and then shove them into your mouth.  You like to play with blocks and then shove them in your mouth.  You enjoy a good stuffed animal and then it ends up in your mouth.  Just about everything, from your thumb to the bird toy attached to your play saucer, ends up the target of your giggly gumming.  Teething is fun!  (Especially when you won't go to sleep at night, you poor thing, because your gums are throbbing.  Teething isn't really that fun.  Sarcasm is, though.)

And you are thankfully not a picky eater ... yet.  So far, you will eat any fruit or vegetable without making a face.  (Except for peas.  But who likes peas, other than Daddy?  And Daddy is a freak.)  You like rice cereal, food from those crazy little jars, a slice of avocado shoved into the mesh food bag thing - everything!  But we need to address how delicious your baby food is, because I'm finding myself finishing what you are not.  Those little Earth's Best jars of apples and apricots, or sweet potatoes?  You eat 3/4 of the jar and I house the rest.  This does not make me feel like a grown up, licking the inside of a jar of infant food.  Actually, it makes me feel like a weirdo.  (But it tastes good!)

And lastly, you're testing out that voice.  You giggle.  You yell.  You flap your arms like your nickname's namesake and try to take off from your highchair.  You think it's funny to babble while you're yawning, and you have serious conversations with your toes at every opportunity.  You have all these words stored up inside of you and I know they're going to start tumbling out soon.  And once they do, you'll never shut up. 

Just like your mama.

Love you,
Mommy

November 17, 2010

Marcel the Diabetic Shell.

Clara Barton Camp is awesome - this is an indisputable fact.  I talk about CBC all the time when I'm at conferences, because there is something so unique and incredibly supportive about knowing that your fellow campers are also insulin-dependent and aren't afraid to show it.

Part of what makes CBC so cool is that it makes you feel like having diabetes is ... sort of cool.  Almost everyone at camp has it, so if your pancreas happens to work, it makes you the odd one out instead of part of the WYOI (wear your own insulin) crowd.  What's more empowering than taking an isolating chronic illness and making it the common - and intrinsically cool - thread? 

Which is why this video - a diabetes take on the Marcel the Shell with Shoes On - is so brilliant.  It takes the Marcel the Shell concept and turns it on its diabetes head.  And if you're "in the know" with diabetes, it will make you laugh.  If you listen closely, you'll hear some of my favorite diabetes lines of all time.  (Including, but not limited to:  "One time I licked a glucose tab and went into DKA.")

It takes some serious (cotton?) balls to make this video.  I love it.  This video was created, voiced, and edited by the talented CBC team of Abby Bayer (who guest posted here), Savannah Johnson (her post is here), Allie D, and Alissa Carberry (I think it's time for Alissa and Allie to post, since I have nothing to link to for them).  

What else can I say, other than this video had me in tears from laughing last night.  Clara would be proud!  

November 16, 2010

Diabetes Gets All Social.

ReadWriteWeb.  Okay?  Okay!"Social media in the diabetes sphere is exploding, and patients are actually using online venues as one of their first lines of defense after diagnosis - and even years after their initial diagnosis. Logging online hours is becoming as important as getting in to see your endocrinologist these days."

- The Social Method for Diabetes Care

As a community of people with diabetes, we definitely know that diabetes is more than checking in with our doctor for seven minutes every few months.  But we want the general population to know that diabetes isn't an easy-peasy fun diseasey (sorry - that was horrendous, but if it rhymes, I'm easily suckered in), and that we still very much deserve research and advancements in disease management.  I'm happy to be hopefully helping to burst the diabetes bubble at least a little bit this morning by guest posting on the widely-read technology blog ReadWriteWeb, with shout-outs to Karen, Scott, George, Diabetes Daily, and TuDiabetes

If you have a chance to check out The Social Method for Diabetes Care, I'd really appreciate it!  It's still Diabetes Month, and we're still doing our best to educate the public about diabetes, one click at a time.

November 15, 2010

Participating in JDRF's Type 1 Talk.

When I arrived at the JDRF Type 1 Talk event in NYC, joining Aaron Kowalski (JDRF's Assistant VP for Treatment Therapies), Lorraine Stiehl (JDRF's National Chair of Grassroots Advocacy), Dick Insel (JDRF's Chief Scientific Officer), and Rachel Steinhardt (JDRF's National Director of Marketing and Communications) on the panel, I realized that I was the only person who wasn't directly tied to the JDRF organization.  Honestly, I felt a little like the wild card.  

So why was I there?  In short:  to represent our community as best I could.   

We had Rachel from the JDRF marketing side, Dick and Aaron from the research side, Lorraine from the advocacy Side, and then me, representing … well, the "plain ol' people with diabetes" side.  I wasn't there for the JDRF.  They were my gracious hosts, and I'm thankful that they thought of my voice (and my incessant cough) for this event, but I'm not their mouthpiece.  For me, our diabetes community comes first, and all organizations come second.  

Many of the questions were aimed at research efforts, including cure efforts and the Artificial Pancreas Project, and Rachel shared many of the resources that the JDRF has available to the community.  And I listened attentively to their answers, and contributed as I saw fit - you can watch the video for the nitty gritty details. But I can't claim to know all the nuances of what they were talking about.  There were a lot of moments of silence from me because I didn't have much to say in terms of research and government advocacy.  But I still said my piece, and wanted to bring the discussion back to helping the community as much as possible.  And I felt like I was listened to, and actually HEARD.  Big organizations care what we, as a community, have to say, and just the thought of that respect makes me so proud of what we've created. 


Type 1 Talk, and World Diabetes Day (and Diabetes Month, for that matter), opened my eyes to a few of the problems, on a diabetes awareness level.  Here are the top three that kept coming up for me:

  • Sure, we wore blue and tested in tandem on Sunday, but we can't help but be aware of diabetes.  We live with it every day.  What about the people who aren't in the diabetes community?  I want to find ways to burst the diabetes bubble.  I know we're all blogging and listening to one another, but how are we stepping outside of the D-OC comfort zone and educating the people who truly don't have a clue?  How do we make diabetes less of an invisible disease and more part of the information mainstream?

  • Also, I know that there is a lot of focus on children with type 1 diabetes, but thankfully many children with type 1 diabetes grow up.  And we become adults with type 1 diabetes.  The adults with type 1 community is getting a bigger piece of the representation pie - like the adults with diabetes sessions that are being added to Friends for Life, and the adults with type 1 toolkit on the JDRF site - and this progress is thanks, in large part, to our passionate diabetes blogging community.  Adults with type 1 deserve, and are now beginning to have, a real voice in these organizations. 

  • And thirdly, I feel that there needs to be more support for the extended diabetes community, namely the caregivers of people with diabetes.  Whether you're the spouse of a diabetic (love you, Chris), or the parent of one, or the best friend of one, you ARE part of this community and you need support as well.  Someone quotes a statistic that there are almost three million people living with type 1 diabetes in the United States.  To me, that number of people in our community swells exponentially when I think about everyone who loves that one person with diabetes.  Our community is bigger than we realize, and for those living closely with diabetics, they deserve some resources of their own to lean on.
They asked for closing statements, and I hope I represented the community with mine:

"Just because we make diabetes look easy, it's not.  And just because we make it seem like it's something we can live with and we can have this big, full life - which we can, but at the same time, it can be very challenging.  I think the one thing that I want to leave us with is that just because we don't look sick, doesn't mean we don't still deserve a cure."

I think this event was a great way to get some discussions going, not only within organizations themselves, but with the diabetes community as a whole. Thanks to everyone who took the time to tune in, and thanks to the JDRF for hosting this event!

Full disclosure: The JDRF paid my travel and lodging, but did not compensate me for speaking. My opinions weren't paid for, per usual. :)

November 14, 2010

World Diabetes Day 2010.

World Diabetes Day 2010

Today, November 14th, is World Diabetes Day.  It's the primary global awareness campaign of the diabetes world, and today is a great day to raise your diabetes voice.  Wear blue!  Support awareness initiatives like The Big Blue Test (which is taking place at 2 pm today). 

Show people what life with diabetes is really like. Help bring diabetes awareness outside of our circle of trust here in the diabetes community and into society at large, because if any group can help dispel myths, misconceptions, and raise awareness, it's OUR GROUP.  (We are loud and powerful!!)

Much love to all my fellow PWDs and Caregivers of PWDs - Happy World Diabetes Day!!

November 13, 2010

NYC Meet Up.

After a long day of traveling into the city, and then meeting up with some of the diabetes crew for the Discovery of Insulin exhibit, and then joining a few friends at the JDRF Promise for a Cure Ball in Chelsea, I'm exhausted.  Like super exhausted.  (Like almost fell asleep in the cab on the way back to the hotel only I sort of woke up a little more when I came to the building and saw that they were filming Batman right on the street.  Saw me some quality Batmobile.)

I'll have a post that includes more words later, but for now, here's a photo from today's meet-up:

Diabetes meet up crew in NYC
Diabetes Meet Up crew in NYC, right underneath that really important word up there:  INSULIN

(And Lesley, it was great meeting you!  And I totally meant to get your email.  Drop me a note if you have a minute!)

November 12, 2010

Portable Pancreas.

Benefits of using long (42") pump tubing?

"Is that, like a cell phone you, like really don't want to lose?"

My pump can hang out, all handy, in the slot on the treadmill.  And since it's not attached to my waistband, it won't threaten to pull my pants down during a workout.

Wins across the board!

November 11, 2010

Parking Lot Lows.

Part of me would love to ride in one of these down a steep hill.  The other part of me wants to live."Brrrrr ... it's a little chilly outside today," I said to BSparl as I tucked her blanket snug around her wiggly little self in the car seat. She waved at me and showed me her sock.

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

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

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

"Am I getting old?"  I asked BSparl.

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

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

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

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

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

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

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

"You okay?"  he asked.

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

This poor kid must have thought I was on drugs.

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

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

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

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

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

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

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

November 10, 2010

Type 1 Talk: Get Involved!

Type 1 Talk This year, on World Diabetes Day, I will be participating in the JDRF's Type 1 Talk event in NYC.  And by "participating," I mean I'll be part of the broadcast with Dr. Aaron Kowalski (JDRF Assistant Vice President for Treatment Therapies),  Rachel Steinhardt (JDRF National Director, Marketing & Communications), Dr. Richard Insel (JDRF Chief Scientific Officer), Lorraine Stiehl (JDRF Volunteer of the Year & National Chair of Grassroots Advocacy), and Rik Kirkland (JDRF International Board Member).

So them.  And me.  Needless to say, I'm very honored and entirely out of my league.  And hoping to properly represent the diabetes online community for the afternoon.

This event will broadcast live, using the Type 1 Talk application on Facebook (click here for that), and people can tune in on World Diabetes Day to catch the broadcast and submit questions for the panel.  (Note:  Ask easy ones.  Like "What's your favorite color?" and "How many fingers am I holding up?")  The JDRF is also hoping for other Type 1 Talk events to take place across the country - right now there are 66 events set up.  (Including Lee Ann Thill's Art & Diabetes Event taking place in New Jersey!) 

The JDRF is hoping for 100 events across the country, and so far there are only 66 officially set up.  If you're interesting in setting up your own Type 1 Talk event, I've got some information that might answer some questions for you.  Here's a PDF that talks about planning a Type 1 Talk event, and here's one about what to do during the actual event

Are you looking for something to do this weekend?  Think about hosting a Type 1 Talk event and help raise awareness about type 1 diabetes.  And please, if you can, tune in to the live broadcast from NYC at 3 pm EST!

Oh, and one more thing:  Have you seen this video?  The one that helps kids get the insulin they need, just by you watching the video?  We're up to 73k views as of this morning, and I KNOW we can get to 100K well before World Diabetes Day this Sunday.  Please, watch the video - even if you have already - and pass it on to your friends!

(Big disclosure:  No one at the JDRF asked me to talk about this.  Or to blog about this.  But if they had, I would.  Works out conveniently.)

November 09, 2010

D-Blog Day: Six Things on SixUntilMe.

D-Blog Day 2010:  SUM EditionIt's Diabetes Month.  And it's D-Blog Day (thanks, Gina!).  This year, the online collective is talking about the six things they wish people knew about diabetes.  I know we, as part of this community, know an awful lot, but I wanted to write this for the people who might just stumble onto this post arbitrarily.  Because we talk a lot to one another within our community, but we need to bring awareness outside of this bubble. 

Here are my six things that I wish society knew about diabetes:

There is more than one kind of diabetes.  This isn't a knock on my type 2 and gestational diabetes friends, but definitely a knock on society's perceptions at large.  People have one musty, old perception of what diabetes looks like, and it's always someone older, heavier, and lazy.  Wouldn't they be surprised to meet our fit type 2 friends, or the 20 year old gestational diabetic?  Or a "juvenile diabetic" who isn't eight years old?  Diabetes doesn't have "a look."  This disease does not discriminate.

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I'm not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we're hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don't feel alone.  Diabetes isn't just mine.  It belongs to everyone who cares about me.

Diabetes isn't just a physiological disease.  It's an emotional one, too. It's not just a question of blood sugar levels and insulin supplementation.  It's about managing the emotions that come as part of life with a chronic illness.  It's about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident.  I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it's a short life or a very long one.

Diabetes isn't easy.
  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  "You just wear the pump, test your blood sugar, and watch your diet and you'll be fine, right?"  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes.  It's never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn't.   

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There's no winning combination and no "right" way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin - this doesn't necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn't work for everyone, and neither do certain medications.  Your diabetes may vary (thanks, Bennet), and what works for you may not work for everyone.   It's important to remember that this disease doesn't have a predictable path, so there are plenty of "right' ways to handle it.

Just because we don't look sick doesn't mean we don't deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn't.  There's no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn't worth their attention.  We deserve a cure.

Happy D-Blog Day to my fellow PWDs and caregivers.  You guys make this whole mess so much easier to deal with.  Thanks for being there!

November 08, 2010

Gluten Free Baby.

There's a whole freaking list of things that we've done, as parents, to keep The Thought out of our heads.  We don't go nuts here, but we have made some decisions that are different from those of our fellow new parents.  Like the decision to breast feed.  And then the decision to integrate solid foods closer to the six month mark rather than the four month mark.  And we've also decided to go gluten free with our little bird.

What a pain in the butt this "gluten free" thing is.  I do not envy anyone who is living with celiac, or who cares for someone with celiac disease.  I've never read so many product labels in my entire life.  

But there are plenty of options for a gluten-free lifestyle, and there are even pancakes to be had.  (Thanks for the tip, Gluten-Free Goddess @danamlewis.)  And for now, BSparl is dining on Earth's Best Organic rice cereal, mushed together with their First Food jars.  She's happy.  She also gets the whole process now, and opens her mouth like a true baby bird when I bring the spoon anywhere within a five mile radius of her face.  (Keeping it mostly in her mouth and not all over said face?  That's still a challenge, but she'll get it eventually.  Either that, or she'll be a hell of a dinner date when she's older.)

Since BSparl is still a baby, her food options are limited as a result of our slow integration and her age, but as she gets older, I want her to be able to grab on those same finger foods that all growing babies manage to get their mitts on.

Which is why I was thrilled that the Happy Baby food company created a gluten-free counterpart to their fantastic puffs:

Tasty yummy awesometown!
Because I was so excited to find these online, I ordered a freaking ton of them from the website, and now a crate of Happy Baby puffle things are en route to my house.   They come in sweet potato flavor and strawberry flavor, and honestly, I'm looking forward to trying these little things out with my daughter.  (And also, Happy Babby has no idea I'm writing about their product, nor did they ask me to.  There's a little disclosure for ya.  Oh, but if they offered to send free crap?  I'd happily take it and invite them over for tea.  How's that for bonus disclosure?)

I know this diabetes community has its finger on the pulse when it comes to all-things gluten-free.  So I'm hoping you might have some suggestions as to what kind of other gluten-free baby foods are out there. I'm not afraid to order items online, so if you have a link, please share!!  I'm aiming for 12 months without gluten for the baby, but if it's going well, I may extend the lifestyle decision.  Any suggestions you have would be awesome!

November 07, 2010

Sunday Snapshots.

We visited the Berkshires up in northern Massachusetts this weekend, and our trek up Mount Greylock was amazing.  While I can easily ramble on for 1,000 words, I'd rather let the pictures do the talking:

I had to Google thing to remember what it was actually called.  At first, I thought it was a "looking thingy for far aways."  Not bright.

Two stately viewfinders stood at the summit of the mountain, even though the cloud had settled so low that you couldn't see more than 20 feet in front of your face.

Almost the moon.

And because of the cold, this frost was taking over everything at the top of the mountain.  It looked like we were on the moon, or had survived some kind of apocalypse (like I had mentioned yesterday).  Each tree, each little shrub, and each blade of grass was green at the very bottom and frosted at the tip. 


Even though it was a quick weekend, it was a nice one.  Nice to get away, nice to hang out with Chris alone, and nice to not get up at 7:30 in the morning with a burping BSparl.  (Even though we did talk about her a ton over dinner.)  And nice to spend some time taking photos of things we don't often see in the teeniest state in the country. 

November 06, 2010

Weekend Photo.

Looks like the moon up here.

We are exploring northwestern Massachusetts to get away and spend a little time sans The Bird, and we came upon this mountain that reached so far into the sky that the treeline was literally frosted over.  Standing at the summit of this mountain, it felt like we were visiting a post-apocalyptic moment in time. 

And it was eerie as all get out.  

(Photo courtesy of Chris's phone, with the Retro Camera app.  From the top of a mountain in the middle of freaking nowhere.)

November 05, 2010

Eye Yi Yi.

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

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

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

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

"The depressing room?"

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

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

I smiled at her.  "I'll take it."  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I can handle this. 

November 04, 2010

Be Part of the Cure.

(And no, this doesn't mean you have to become Robert Smith.)

With more than two decades of diabetes clocked in, my faith in a cure has been shaken with every diabetes anniversary.  Each September, I realize that more has been done to improve the quality of life for people with diabetes, but little has been done in giving us the hope that a cure - a real cure - is possible in our lifetime.

Except last year, when I made a trip to Florida to visit the Diabetes Research Institute, my hope was reignited.  The Diabetes Research Institute is functioning solely to provide research for a cure for diabetes.  And I have cautious hope that they will be the ones to make great strides in curing type 1 diabetes.  If not for me, then for the generation after me.

Which is why I am part of The Cure this month for Diabetes Month.  I made a small donation to the DRI and uploaded my photo to the Cure collage.  (You can find me in the bottom left hand corner of that sassy little E there.) 

Be part of the Cure!

Camillo Ricordi, Scientific Director and Chief Academic Officer of the University of Miami Diabetes Research Institute, stated in a recent interview on the Huffington Post, "I started this work to cure diabetes. My goal has not changed. I will keep working until I get the job done."

I can get on board with that.  Be part of the Cure.

November 03, 2010

Therapy: The Physical Kind.

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

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

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

I was permanently in pain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

November 02, 2010

The Big Blue Test.

It's Diabetes Month.  (You may have heard the rumors.)  And there are some fantastic awareness efforts taking place across the diabetes community, both online and off, during the next 30 days.

But there's one campaign that's not only raising awareness, but also helping to bring insulin to children in some of the world's poorest countries:  The Big Blue Test.  Here are some of the details, pulled from the press release -->

The Big Blue Test, an initiative started by the Diabetes Hands Foundation (DHF) in 2009, takes place every November 14 during World Diabetes Day. People with diabetes are invited to test their blood sugar, do 14 minutes of activity, test again and share the results. In 2009, more than 2,000 people took the Big Blue Test and saw the impact of exercise on their blood sugar.

For 2010, the Big Blue Test is even bigger! Together with Roche Diabetes Care, makers of ACCU-CHEK® diabetes products and services, DHF is aiming for a minimum of 100,000 views of its Big Blue Test promotional video. To help the foundation reach this goal, Roche has underwritten the production of the video and will make a donation for every view the video receives up to $75,000. DHF will use the donation to help Insulin For Life and the Life for a Child program, run by the International Diabetes Federation. These two global, humanitarian organizations provide diabetes medication and supplies to children in the world’s poorest countries.

And what do we need to do?  We only need to watch this video.  For every view, we make a difference.  You aren't being asked for your email address, or your personal information, and no one is selling you something.  This video is to help kids get the insulin they sorely need.  Insulin is not a cure, but it does save lives.  And we, as a community, can help make a big difference this month.

So please, watch the video.  And pass it on to your friends.  Ask them to pass it on to their friends.  Raise your voice for the Big Blue Test.

November 01, 2010

First Walk.

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

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

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

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

Kid cracks me up.

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

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

Visitors since November 7, 2005