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November 30, 2011

Bird: A Quick Language Primer.

I am slowly learning to speak "bird," and it's been an eye-opening experience, seeing the world through her perspective.  Here's a quick primer:

Sterling ... pewter.  Right up in here.

This is a "pewter."

Faffles for everyone!!

And this breakfast treat is referred to as a "faffle."

Clearly this is a size 24 AA.

"Bra."  Self-explanatory, right?

Poor little Siah, hiding from BirdFace.

"Size."  A quiet pause, and then charging after her:  "SIZE!!  SIZE!!!"

Poor Size.  She's going to end up covered in faffles one of these days.

November 29, 2011

You Say Dubai, I Say Hello.

Hello, hello!

Even on Google Maps, it looks freaking far.This time next week, I'll be en route to Dubai, UAE for the IDF World Congress.  I was invited to travel with the team at Novo Nordisk, and I'm honored to be part of their discussion panel and to take in part of the IDF Congress first hand.

Okay, that sounded nice and formal, like I am completely in emotional control of the situation.  Which is a stark contrast from the HOLY EFF!! conversation going on in my head.  Because, if you know me at all, you know I'm a travel spazz.

I have never been to the Middle East before.  The farthest from home I've ever been is Barcelona, Spain, and Chris and I traveled together.  So even though we were in a place where we didn't fluently speak the language, we had one another to keep watch.  (Like when my blood sugars tanked in the airport, for example.  Had I not been with Chris, I'm not sure what the outcome of that situation would have been.)

However, I'm flying solo (not literally - there are sure to be hundreds of people on these flights, but no one I personally know) to Dubai, so I'm a little nervous.  The travel days are long - somewhere from 12 to 17 hours of travel time - and the time change is significant.  Dubai is nine hours ahead of the east coast, so I'll be leaving Boston early in the morning and arriving in Dubai ... early in the morning.  It's like time travel.  Only without a Delorean.  

And I've never, ever been anywhere like this before.  My limited exposure to all things Dubai is scouring the Internet and talking with Abby about the Kardashians.  (It was a short discussion, and one I'm embarrassed to have had.  Thankfully, Abby does not judge me ... publicly.)  I have no idea what's acceptable/what's not.  I've heard that you shouldn't/can't take photos of landmarks.  I've heard that the dress code for Western women is still very strict.  I've heard that there are camels.  (This one is true, I think.)  I've also heard that you can do whatever and wear whatever, and it's all good.

So this is where you guys come in:  Have any of you ever been to Dubai?  What should I be packing to wear?  What should I be bringing?  Where should I visit?  How do you manage diabetes stuff with such a stark time change?  What should I know before I leave (next week)?

Any/all advice is very welcome.  And appreciated!!!

November 28, 2011

From Abby: Hello Hypothyroid.

With diabetes comes many "bonus conditions," like blood pressure issues or thyroid problems.  Recently, Abby visited her endocrinologist (four hours away, thanks to a complicated insurance situation) and ended up checking a completely new "yes" box.  More from Abby below ...

*   *   *

I'm living four hours from my endocrinologist now. I can't get a new one here in Boston because I'm still under my mom's New York State insurance, so it has come to me uploading my pump and allowing my endo to look at the data when I need help, and getting bloodwork done at her office when I make a trip home. (Which honestly is fine with me at this point.)

I got all my yearly labs drawn a few weeks ago, without an appointment. It was a quick visit, in-and-out of the lab and on my way home with a bandaged arm and that anticipatory "What will the results BE?!" feeling.

A few days later, I called the nurses line at the office to see if my results were in yet.  For some reason I couldn't put my finger on, I'd been really stressed about my thyroid levels all week. I usually couldn't care less about them, basically just knowing in my mind it was only a matter of time. This week though, I thought about that more than my A1C. I don't have any symptoms, just have had this strange feeling.

A nurse's voice that I didn't recognize from the office (It's a really small office; I think I've met everyone there and probably babysat their kids) called me back with my results. At first, she told me that I had a letter in the mail, but she could give me the results over the phone, too, if I needed them. ("Yes, over the phone would be great," I'm thinking.  Not to be rude, but that is why I called - for the results?)

First the nurse tells me that my A1C is 6.8%. Which is awesome, because this officially marks a whole year under 7.0%. [Editor's note:  NICE JOB on the A1C, Abby!!]  Frankly, I haven't been trying my best - but I guess I've been doing well without knowing it. Sometimes being good isn't even good enough with diabetes, which is really frustrating.

Then the nurse tells me, in a very nonchalant sort of way, that my thyroid is too low and my endo wants to start me on levothyroxine.  I immediately had tears in my eyes, and then thought, "Wait, why are you crying about this ... you knew this A new diagnosis can be a very big pill to swallow.  What, you didn't expect this alt text to be so literal?could be coming at some point?" Except that "knowing it's coming" and "having it be here" are two very, very different things.  A new diagnosis of a chronic disease is not easy - hypothyroidism or not. This one fortunately won't affect my life much, is easily controlled by a daily pill, and is well understood in the medical community. I mean, thank goodness I had diabetes first and hypothyroid second, right?

Still, all that logic and reasoning can't outweigh my emotions.  And these emotions are for the birds because I am not a crier (except for after a drinks or at a really sad movie). So why the waterworks with this news? I just don't get it. Was it the ease in which the nurse told me? Maybe because my blood sugar was over 300mg/dL when she told me? Or are all the other stressors in my life piling up and this one is the icing on the diabetic cake?

Nevertheless, I am now officially adding to the "high probability" that people with type 1 will also have hypothyroidism. So can I go stuff my face with cake now?

*   *   *

If you're living with a thyroid condition and you have some words of advice - or support - for Abby, please chime in.  A little support goes a very long way.  And Abby, I'm working on that cake.  ;)

November 27, 2011

Fail Pancreas.

Every time I see the Twitter fail whale, I think of this:

The pancreas looks like a corn dog.  Or a twisted Louisville slugger.  Or a weiner.  Yup.

(Bigger version on Flickr)

It makes sense if you have diabetes.  ;)

November 26, 2011

Snapshots: Good Day, Bad Day.

After a very tough few days, diabetes-wise and emotionally-tied-to-diabetes-wise, I am grateful for this no-hitter.  Couldn't have come at a more necessary time.

Blue for Diabetes Month.  November isn't over yet, suckas.
 

November 25, 2011

Blue Fridays: Four.

Today is the fourth, and last, Blue Friday for November.  And I'm thankful that I'm home and not in an airport for the first Friday this month:

The cat - she still exists!  And she's still daft!  Punk!

And I just wanted to confirm that Siah is indeed still alive and not being terrorized too much by the Bird.  (I won't mention how her new thing is playing Tag with them, but they never, ever get to be IT.)

Happy Blue Friday!!!

November 24, 2011

Happy Thanksgiving!!

Continuing our tradition of being total turkeys, this year, the coloring is courtesy of the littlest turkey:

Birdy's hand is so much bigger than last year.  Which makes me all waaaaaaaah.  In a nice way.

Happy Thanksgiving to my American friends!  And for those of you who don't celebrate Thanksgiving, happy Thursday and won't you please enjoy these strange crayon turkeys?

November 23, 2011

Pavlovian Diabetes.

It’s that well-worn tale of Pavlov and his crazy dogs, the ones that he trained to expect treats whenever a bell was rung.  And whether or not the treats were offered, the dogs learned to respond by salivating, waiting. 

Diabetes has made me one of Pavlov’s dogs.  But instead of the chimes of a bell triggering salivation, it’s the sound of the Top Gun theme song coming from my insulin pump, making me check the status of my battery.  Or the sound of my Dexcom letting loose with a BEEEEEEEP!, making me reach for my glucose meter.  The sounds of diabetes are so ingrained in my brain that I don’t think before responding.  My reaction to certain sounds is visceral. 

Sometimes the sounds of my diabetes are subtle – the quiet beep of my meter while it counts down to my blood sugar result, or the shunk of the Inset going into my skin on pump site change day.  It’s these sounds that I can hear in a quiet classroom as though they’re magnified,

Or at the airport.  Last week, while I was in at Pearson Airport in Toronto, I heard that unmistakable sound.  A sound that rose above the din of the airport.

Boop beep boop.

Salivate.  I whipped my head around and saw a woman in an orange jacket adjusting something by her waistband.  To anyone else in the airport, it looked like she was checking a text message, or the time, or tucking in her shirt.  But I knew what was up.  I heard the sound.

Boop beep boop.

When we were standing in line to board the plane, I asked her one simple question.

"Medtronic?"

She smiled.  "Yes?"

I lifted up the edge of my shirt to show her my silver pump.

"Animas."

For five minutes, we talked tubing, basal rates, and insurance coverage.  And then we went our separate travel ways, but not without confirming, once again, the poignancy of this community.

Diabetes in the wild never fails to win me over.  I think my Pavlovian response is to feel that swell of kindred spirits. 

Oh, and to salivate a little bit, just for kicks. 

November 22, 2011

World Diabetes Day Postcard Exchange: Romania!

My postcard for the World Diabetes Day Postcard Exchange came in this week, and I love it.  It's from my new friend Corina in Romania:

My WDD Postcard from Corina - it's awesome and Birdy keeps trying to kiss it. 

I think she has very lovely handwriting.  :) 

To see more of the airmail artwork (because this was truly a global art initiative), visit the World Diabetes Day Postcard Exchange page on Facebook.   

November 21, 2011

My Great Canadian Adventure.

Over the weekend, I was in Toronto, ON for the Animas Type 1 Update event at Mount Sinai. This was my first time meeting the Animas Canadian crew, and only my second time to Toronoto, but it did confirm that Canadians are a nice bunch.

Part of my presentation was about our diabetes online community, and how I got involved, and it amazes me how universal the language of diabetes truly is.  Regardless of where I am and who I'm speaking with, our "terms" make sense across the board.  (Except when it comes to mmol and mg/dL.  I think I sounded like a crazy person in front of the Canadian audience when I was talking about being happy seeing a 100 on my meter.  Also, "millimols" sound like a tiny group of adorable vermin running around.  Like mini moles.  And thus ends this mental digression.)

The Animas Canadian heroes ... and a few rogue Americans thrown in there.

The Animas Canadian heroes are an amazing bunch, including Mike Fisher (you have to read his story about amputation and then a diabetes diagnosis ... not what you think), pilot-in-training Lindsey Carswell, and competitive kart racer Chase Pelletier.  I'm always proud to see fellow PWD doing their thing and bringing diabetes along for the ride (whether it wants to come or not ;) ).

Sandy Struss (from Animas Canada) and me.

And I was so happy finally meet the Animas Canada marketing manager, Sandy Struss.  You can read her columns at Sandy's Corner on the Animas.ca site - she's easily the happiest person I've ever met in my life, and it was awesome to finally connect in person after months of emailing and phone calls.

Thanks, DOC, for being a constant source of inspiration and great people to talk about.  And thank you, Canada, for hosting this Rhode Islander, and I'm looking forward to the next Canadian adventure!!

[Disclosure:  The team at Animas Canada provided my travel, lodging, expenses, and honorarium for this event.  And I forgot to include this disclosure when I posted this blog entry earlier today.  I am late.  I am sorry.  I've got legs.  Do you like bread?]

November 20, 2011

From Abby: Part Two of the Shred.

Abby continues to shred (ouch?).  Because she's awesome.  Or crazy.  But either way, she's still on her mission to get into better shape and find her abs.  ;)

*   *   *

So remember how I started Jillian / Tally / Ginger plan? Well, here’s a little update.

First of all, I love the TallyGear Tummietote. I have a size small Tummietote, and a small-waist-larger-hips kind of body, so I wear it really nerd-ily around the thinnest part of my waist. If I have a big t-shirt on, I keep it under the shirt, and if I’m wearing a yoga-type shirt I put it over it. (I work out alone in my living room, so thankfully, fashion is not a priority here.) I love that it keeps my pump tight and close to my body but the pump doesn’t get all sweaty and gross as it would if it were clipped to my shorts. I’ve also washed the Tummietote twice and you’d never know it; it still looks brand new.

Rockin' the Tummietote

Secondly, I’ve been keeping an excel spreadsheet of my pre- and post- workout blood sugars and treatments, as well as other notes (such as adding weights or post-exercise highs) and my weight weekly.  I got this idea from Ginger Vieira’s book and modified it a little bit so it fit what I was doing.  I have a very "chart, math, science-y" sort of brain, so organizing things in a spreadsheet was best for me. By the sixth or so day of doing this workout routine, I’d already realized that I can’t eat a snack with a blood glucose in the low 100s without shooting way up after, but I do need to eat a snack and take a full bolus for it.  Ginger’s book also taught me that exercising with a high blood sugar is harmful to your body, so I have a few days on my chart where I couldn’t get my sugar to come down and had to skip the workout. This process isn’t perfect by any means, and you can see that doing the same thing twice in a row doesn’t always result the same way.  Silly diabetes.

Why ... so ... organized???  #batman

Lastly, the workout itself should probably be mentioned. I’ve been doing Jillian Michaels’ 30-Day-Shred system and I really love it. Okay, that’s kind of a lie. I hate it less than other things.  It’s a 20-minute workout with a warm up and cool down. Thirty minutes is about all the attention span I have for a workout, so this is ideal for me. It also is very intense right from the beginning and doesn’t stop until the cool down, so I know I’m getting a good cardio workout.  I haven’t really lost any weight, but I can see what I think might be the beginning of abs and some of my workout shorts aren’t as tight anymore – which is what really matters to me.  

This whole experience hasn’t been perfect, though.  I skip weekends because my roommates are home and I’d rather die than let them see me workout in our living room. I also forgot to bring it with me when I went back to NY for a weekend, and those days of persistent high blood sugars have left me quite farther behind on the system than I’d wanted to be.  After four weeks I’ve only actually done the workout nine times. This seems like not enough, but going from not working out at all to doing it two to three times a week is an accomplishment for me.

I guess the moral of this first update is that TallyGear is great, tracking my blood sugar success is fun (nerd alert), and I’m going to try harder to commit to three to four times a week from now on.

And also that diabetes isn’t getting in my way as much as my plethora of excuses to sit on my bum. 

*   *   *

Just as a bit of non-disclosure, TallyGear, Jillian Michaels', Excel spreadsheets, and Ginger have not asked to be mentioned in these posts.  The TallyGear team sent a few things for us to try and Ginger sent us her book, but that was almost a year ago and I'm sure they think I've forgotten by now.  HA!  Haven't forgotten.  Just way, way behind.  

Thanks, Abby, for chronicling your workouts and inspiring to give the ellipmachine a go again.  

November 19, 2011

Snaphots: Coffee in Toronto.

And thankfully, I wasn't beaten up too soundly for ordering an iced coffee while in Canada in late November.  :)

This weekend, I'm in Toronto, ON for the Annual Type 1 Diabetes Update (after a lovely invite from the team at Animas Canada), and after the event, I met up with some local Canadian PWD for caffeine.   Nothing like a pile of pumpers cranking in the coffee.  Thank you so much to Larry, Jamie, Virtue, and Ilana for coming to hang out!

November 18, 2011

Blue Fridays: Three.

My third  Blue Friday in an airport - hat trick!

Are you wearing blue?  ARE YOU?  ALL FREAKING CAPS!

Are you wearing blue?  Are you wearing blue and drinking coffee?  Are you wearing blue, drinking coffee, and hanging out in an airport?  Well done, then!  

Support Blue Fridays and help raise awareness for diabetes!

Team Tupperware.

Hot on the heels of marking her thirteenth diabetes anniversary (happy diaversary!!!), Abby is making her first vlog appearance.  Today, we're doing a quick intro to who she is, what she's about, and an update on her job search in Boston. 

Little did I know that Abby and I would both make tupperware an integral part of our vlogging process.  Check out the video to see what I mean:

And be on the lookout for Abby's next vlog, which involves a high level of zebra insulin.  You'll see ... ;)

Oh, and happy Blue Friday! Photos coming soon!

November 17, 2011

Giving You a Reason to Believe.

The Diabetes Research Institute is one of those places that, walking through its halls, you feel inspired.  (I feel the same way when I walk through the Joslin Clinic in Boston - true diabetes magic happening there.)  The people there are focused solely on finding a cure for diabetes, and that's a mission I can truly get behind.  Today, the DRI's Tom Karlya is sharing some information on the Reason to Believe campaign. 
*   *   *
Kerri:  Hi Tom!  You and I have worked together in the past, and I'm very familiar with your passion for finding a cure for this disease that both your kids and I share.  For those who don't know, what is the Diabetes Research Institute and what is your role there?

Tom Karlya from the DRITom:  Thanks Kerri, over the years it has been exciting to work alongside you to help the diabetes community.

The DRI is the largest and most comprehensive research center in the world with a multidisciplinary team of scientists passionately committed to curing diabetes in the fastest, safest and most efficient way possible.  We are solely dedicated to curing diabetes by finding a biological cure – restoring natural insulin production in patients.  This has been and will continue to be our singular focus until that goal is reached.  And it will be reached.

Kerri:  I've heard a lot about the Diabetes Diplomats, and I know that outreach effort has engaged an amazing group of people.  Who are the Diabetes Diplomats, and what are they all about? 

Tom:  This program was created so people with, and even without, diabetes can run programs right in their own community.  Kids, adults, Grand Parents, workers, students, all get involved.  School site events, community involvement events, and even personal fund raising pages can all be used to both educate and help raise funds.  Big events are great; the Diabetes Diplomats are more grass roots and local where the person running the event is the central point.  It is so easy even kids in Kindergarten have been the central point of a Diabetes Diplomat program. We are using our Reason to Believe Campaign as a jump start for everyone to hear about the program and get involved. Fifth Season American Idol Finalist and Actor Kevin Covais is our spokesperson, we are thrilled with everyone who is getting involved. 

Kerri:  For Diabetes Month, I've seen the amazing Reason to Believe campaign that the DRI has kicked off.  Can you tell us more about that campaign, and what the goal is?

Tom:  Clearly managing diabetes is so crucially important but the idea of a cure is just as alive today as it ever has been. Curing it has been and will continue to be our singular goal.  With that idea in mind there is a Reason to Believe.  The notion of a cure is not pie-in-the sky.  It is real.  I invite anyone to visit the DRI and touch hope ... this hope is real and anyone telling you it’s not is wrong.  Is it tomorrow, no it is not.   But if more places collaborated and more money was spent on research that will actually make a difference; I assure you we would get there much quicker.  People DO believe in a cure and the very reasons are the loved ones they have living with diabetes.  People can click here to learn more and see some incredible videos of people who have a Reason to Believe.

Kerri: How can the amazing diabetes online community get involved in this campaign?  We want to help! 


Tom:  The most important thing to know and to remember is that this is only commencing this month and will continue all the way through November 2012 so people can surely start to get involved now.  If the DOC could help spread the word about the program, THAT would be incredible.  People all around the country, and even in a few foreign countries, are informing us of their Reason to Believe Diabetes Diplomat projects. But with the DOC’s help we could do so much more. 

School site ideas are fabulous.  Easy, quick, educational, and raise funds while having fun.  One Principal from Pennsylvania stated that this program was the finest he had seen in all of his years as an educator.  Walkathons, dress crazy day, caps for a cure day, team jersey day, and pajamas at school day are all some of the fun ideas.  Community events like being involved in a marathon; selling scannables (contact me, I’ll explain) in retail stores, and in one huge candy store (Deborah Ann’s in Connecticut) they are holding a sweepstakes BUT ALSO explaining why candy is not ALL OFF LIMITS to people with diabetes as a teachable moment.  Pro Golfer Kelli Kuehne has connected us with Clemmy’s Ice Cream who is donating 50 cents to the DRI on every pint of their sugar free ice cream they sell in Florida in November. Pro bowler Ryan Shafer is also involved in a really fun event that bowlers are all involved in his hometown.  We have had incredible help from our sponsors Animas, LifeScan, Diabetes Health Magazine, and Children with Diabetes.  Anyone who wants help can email me personally at tkarlya@drif.org and ask me how to get started.

People can find out more about the DRI at DiabetesResearch.org, go to our Diabetes Diplomat page, our Cure Diabetes Page, or even our Diabetes Research Institute page on Facebook.

In closing, I just want to add my thanks Kerri for giving us some of your valuable time and space here at Six Until Me to help us get the word out.  You continue to not only inspire us at the DRI, but also inspire and educate the world on so much in your unique style.  I am so privileged to call you a good friend as well.  Thank you.
*   *    *
Thank you, Tom, for your tireless advocacy and kind words.  Don't stop believing. :)

November 16, 2011

Nineteen.

Dear Daughter,

For nineteen months, you have been my best friend and my littlest bird.  And in the last few weeks in particular, you have become a lovely little tornado of terror.  If you aren't clutching fistfuls of crayons and scribbling on the wall, you are trying to smoosh the cats or chew on discarded glucose meter strips.  (Mommy knew that was coming - it was only a matter of time.  I'm much more careful now about getting those dead strips into the garbage.)

You are still my best friend and my littlest bird ... you're just decidedly more destructive these days. Like yesterday, when you were "helping" by determinedly unsettling every pile of leaves I was raking.  Or when you "help" me fold laundry by grabbing shirts off the top of the pile and waving them over your head with your "Mama!" battle cry.  Or when you want to "help" change your diaper by trying to grab it and whip it off before I've ... contained the situation.  (This is a fun one.)

I just can't "leave" you alone. GET IT?  I think you're awesome.  And I also like leaf puns.

You have inherited your mama's awkward dance skills, but you rock hard to your favorite artists (Beastie Boys, Adele, Radiohead, and some downright tacky Christina Aguilera), and you even participated in the Big Blue Test with me this month, getting our dance party on.

This month, you've taken the alphabet and made it your plaything.  I don't know exactly when you made the connection, but you now know most of the letters in the alphabet.  (I had my first clue when you were in the bathtub and shouting "P!!!"  I thought you PEED! but instead you were holding the yellow letter P in your hands.  Also, why did the manufacturers make the letter P yellow?  Well-played, Toy Company.)  You point out letters to me all the time. ("Arrrrr!"  "Seeeeee!"  "Beeeee," closely followed by "Buzzzz."  Oh those homonyms.)  I know I was an early reader, and I hope you're on that same path, because I'd love a fellow book addict in our house. 

Playing in Newport, RI

And you're happy.  Kid, you are the happiest little ball of curly-haired chaos that I've ever met in my life.  There's something inside of you that is tightly-wound and always grinning, and I'm very thankful that you dole out smiles with far more frequency than tantrums.  (Even though you are a Class A tantrum thrower, having just added the word "NO!" to your vocabulary and using it with reckless abandon.)  Even when I ask you the same question over and over again, you are patient and tolerant with your mother's foolishness.  And you don't mind when I giggle at you for asking for a "dodo" (aka "doughnut") when we drive through the coffee shop in the morning.

Pajamas and wings - like you do.

I've been traveling a lot lately, and I miss you terribly when I'm gone.  But when you and Daddy pick me up at the airport, and I see you waving from your carseat as I walk towards you with my suitcase, my whole world is right.  

"Mom!!!"

"Hi Birdy!!  I love you!"

"Dodo?"

"Sure."

You're my little butterfly, flitting around the house in your pajamas.  (I still laugh that you call "butterflies" "bras."  It makes for interesting dinner conversation.)  You forgave me for accidentally washing a black crayon with your laundry, making your little, pink doggy more of a chimney sweep. You make me see the magic in every day, even when you're coloring the walls.

I love you with my whole heart, Birdy.  You bring major happies to our lives.

Love,
Mommy

November 15, 2011

My Dexcom Sleeps Nude.

During the day, my Dexcom wears clothes because it's a modest little machine:

Suited up in blue. 

But at night, it strips down nude and sleeps in a "hyperbaric chamber" ...

Dexcom under glass

... because the glass makes the high and low alarm vibrations easier to hear.  I just have to remember to make sure the glass doesn't have water in it before I go dropping the receiver in. 

This is real life with diabetes:  awkward, a bit strange, and always on the move.  :)

November 14, 2011

World Diabetes Day 2011: Act on Diabetes Now.

BEEEEEEEEEEEEP!

I reach over to turn off my alarm, only to realize that the noise is coming from the Dexcom receiver, buzzing away in the glass on my bedside table.  The alarm clock doesn't look familiar.  The blinds covering the window are swaying from the heat being pumped into the room.

And then I remember that I'm in South Carolina.  And I'm in a guest room.  And I'm alone.

I know I need to do something.  I'm just not sure what.  I click my thumb against the Dexcom receiver button and see "LOW."  No numbers; just words.  And then I fall back asleep.

Minutes pass like months, and the Dexcom beeps again.  I reach for my glucose meter and load a test strip into it.  It gives a little beep of acknowledgement.  And I fall back asleep again.

Am I sleeping?  Am I drifting in and out of consciousness?  I can't tell.  I just know that the pillows are damp from my low-induced sweat, but they feel so comfortable. Closing my eyes is the only thing I want to do, despite the tiny voice in the back of my mind, screaming at the top of its lungs:  "Drink the juice." 

Another lifetime passes by, and I remember licking the blood off my finger after testing, but I don't recall the number on my meter.  My brain isn't thinking rationally.  I can only think in short bursts of sentences, most of them imperative, regressing my internal monologue to that of a neanderthal. 

"Get juice.  Drink juice.  No sleep.  Stay awake.  Hold bottle to face.  Drink." 

I drink it.  The room starts to come into focus.  I remember that I'm at a friend's house.  I remember that I am meeting with people that morning.  I remember my name, and that I have diabetes.  These memories come back to me in lightning bolts of realization.  The juice bottle in my hand is empty, and my shirt is damp from sweat. 

"Ew," I say to myself, running my fingers through my hair and shaking loose the ropes of ponytail that have slicked themselves to the back of my neck.  But I'm still not back, still not sure.  What happened?  What almost happened?  I think about Chris.  I think about Birdy.  I think about how far away I am, and how far away I just was.

Today is World Diabetes Day.  As many as three million people are living with type 1 diabetes in this country.  While so much progress has been made in research and advocacy, community and technology, this disease still lives with us every day.  And every day, we work tirelessly to keep it from gaining the upper hand. Some days are easy.  Some days are hard.  But no days are off.

Diabetes never rests.  And neither can we.  We must act on diabetes now.

The alarm clock goes off.  It's time to wake up.  Only I'm awake.  I'm wide awake.  

World Diabetes Day : Act on Diabetes
 

November 13, 2011

From Abby: Kids Know What's Up.

I'm still in South Carolina this weekend, so Abby is chipping in to talk about kids.  And no, not her kids.  But sort of her kids.  You'll see ...

*   *   *

Xavier Roberts spent a lot of time writing his name on the butts of these things.Since I moved to Boston, I've been babysitting to earn enough money to survive. (That whole registered nursing thing is not working out so well, but that's beside the point.  Still on the job hunt here.) I'm currently watching a family of three girls, ages two, six, and eleven. The oldest one has some health issues of her own, so she totally dismisses my diabetes as simply a cool coincidence.

The six-year-old is far more concerned with cheating at UNO than anything to do with me.

But the two-year-old ... this little girl is hilarious. We were reviewing body parts last week and she told me that her mom has a chin but her sisters don't.  Also, she LOVES everything about my diabetes technology. She pulls my Dexcom out of my pocket on a regular basis to push the red button. (I've taught her that she's allowed to only push that one because the rest of the buttons will break it.)  When I eat a granola bar in response to a Dexcom reading of 84 mg/dL and a diagonal down arrow, she sits next to me and refers to the food as my "medicine." 

Today I was sitting next to her while she was eating snack, she pulled out the tubing of my pump from my pocket and said to me, "Do you have to wear that all the time?"  I responded with, "Yep I do; it helps me feel good and I'd get really sick without it." 

This smart little kid just looked at me and said, "Oh, well, I wish you didn't have to wear it. And I wish it was pink; that's my favorite color."

Me too, kid.  Me too.

*   *   *

Kids have a way of whittling things down to their most manageable size.

November 12, 2011

Snapshots: Fall.

I love the colors in this photo.  Also, I love alt text.
(Click here for the full size photo)

I'm in South Carolina for a diabetes-related project this weekend, and during the course of exploring, I stumbled across this little bit of fall, just waiting for its picture to be taken.

November 11, 2011

Guest Post: Helping Scott.

Today, I wanted to share some words from Scott Benner, blogger at Arden's Day and dad to Arden (who has type 1 diabetes), to get the word out about his ambitious goal to help people with diabetes gain access to insulin pumps.  He's boldly asking for some assistance, and as someone who understands the importance of diabetes technology, I am happy to help him spread the word. Take it away, Scott!

*   *   *

Scott and Arden

My name is Scott Benner. I’ve been a stay-at-home father since my son Cole was born in early 2000. My daughter Arden was diagnosed with type I diabetes just after her second birthday, in the summer of 2006.  Exactly one year later I wrote my first blog post on my site, www.ardensday.com. Through everything, the diagnosis, coming to terms, and taking control, I’ve learned many valuable life lessons. A few of them stand out above the rest: perspective is most important and you pay a heavy toll to have it, transparency only leads to good things, and I should be doing more.

It’s the last one that I have struggled to put into practice. I share on my site so other parents will know what to expect and hopefully feel less alone. I love writing and I treasure the experience of interacting with this amazing online community.  But there is one aspect of my interactions with all of you that leaves me feeling empty. I first wrote about it in an entry over two years ago entitled, ‘Time and distance lend perspective’. After seeing the positive influence that device technology available now to type I diabetics brought to Arden and my family, it saddened me to realize they weren’t available to all who wanted them. I said in part:

“Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un- or under-insured are incapable of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...”

It took me two years, a lot of courage gathering, and some brief but powerful advice from Kerri to be able to say this:  I am moving forward to establish a charitable organization with the single goal of putting insulin pumps and continuous glucose monitors in the hands of the children that need but can not afford them. The initial paperwork and boring behind the scenes stuff is a bit arduous but I have done my diligence, plotted a course, and announced my intentions on my site.

The reason that Kerri has so kindly given me this space is that I can’t completely afford the initial payments that are required to properly file the necessary paperwork to qualify for charitable status. I almost let that stop me but then I thought, “maybe others would be able to support this goal if they knew how focused, passionate, and truly dedicated I was to making it a reality”.

So here’s the pitch:

In a few days I’ve all ready received some amazing gifts from people like you. People I’ve never met in person, that have no real reason to believe in me, but who like me, put hope above all else. If you can see your way to hoping along with a dreamer, then please follow this link for details on how you can be a part of bringing something positive and wonderful into the world. A world where too many children live with their diabetes everyday without the tools that they want and need and deserve.

Thank you so much for taking this time with me!

- Scott Benner - @ArdensDay

*   *   *

Thanks for your efforts, Scott, and good luck!!

Blue Fridays: Two.

Even though I only have a blue scarf today (and blue eyes - do they count?), I'm still representing the diabetes community for Blue Fridays.  I'm at the airport - again - and en route to South Carolina for the weekend.  George Clooney doesn't have anything on me.  Oh, except maybe a better sleeping schedule.  ;)

Get yer blue on ... even if you're at the airport and you're exhausted.

November 10, 2011

Today.

I came home today to discover so many blue candles in bloom online.  Within a few clicks, I saw her face and read her story and felt that pang of loss for someone I'd never met.  Again. 

I wanted to repost something I'd written last October, because it's still true.  Diabetes is a tough, invisible disease that can devour us entirely, but we are strong.  We have each other.  We have today.  And we need to reclaim the unity in our community, because we are what matters.  It's you.  All of you.  All of us. 

*   *   *

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

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

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

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

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

Dead-in-bed is the exception.

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

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

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

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, I love you guys heaps.  Seriously.we're all we've got.
- October 21, 2010

World Diabetes Postcard Exchange: SUM Edition.

We came.  We saw.  We colored and then mailed stuff for The World Diabetes Day Postcard Exchange

Kerri's is off to Romania!

My postcard!

Abby's is en route to Atlanta. 

And Abby's postcard.

The DOC is ripe with art these days - it's a good time to invest in washable crayons.  :)

Oh thank goodness for washable crayons.

Oh Birdy.  You are a wily one.

November 09, 2011

D-Blog Day: 2011 Style.

Gina, creator of D-Blog Day, issued a bit of a different challenge this year:  scrapbook your diabetes.  The only rules were to have your page on a 12x12 piece of paper, include the blue World Diabetes Day circle, the phrase "I want a cure," and your name and diagnosis details.  The rest is up to you.

Being the Last Minute Johnny that I am, I didn't have a chance to create my World Diabetes Day postcard (more on that later) or my scrapbook page until today, but I'm proud to be a late entry.  And honestly, playing "artist" for the morning did wonders for my writer's block.  I'm suddenly feeling very inspired.  

My D-Blog Day entry for 2011.

(And I do want a freaking cure.  But I know how to ask nicely.)

With Sprinkles on top?  ;)

Happy D-Blog Day to my friends and extended family in the Diabetes Online Community!!  

Guest Post: Thai High.

The other day, I received a direct message on Twitter from Ralph about high blood sugars.  "Have you ever written about them?"  I knew I had, but I also knew that Ralph had just experienced a whopper of a high, so I wanted him to share his story.  Because, as he states, lows are scary, but extreme high blood sugars can make you nervous in an entirely different way.  Thanks, Ralph, for sharing your Thai-high.
*   *   *

Ralph.  I’ve always been more afraid of low blood sugars than highs.

But then again I’d never been through a really bad high before.

Killer lows, those where you drop into the 50s, the 40s, the 30s… the kind that leave you twitching, bathed in sweat and incoherent… are the quintessential diabetic horror story.   

But highs, serious highs, can be brutal in their own, more subtle ways.

It all started with Thai noodles.  

I know better than to have something like Pad Thai or Phad See U or Drunken Noodles for dinner.  I know I’m going to be bumping against 300 or so all evening if I do this.  Lunch with an afternoon to work it off?  Maybe.  Dinner? No… just no.

But I’d been running low all afternoon.  And everyone else in the house was talking about Thai, and my thoughts never went far beyond “Yum.”  I wanted noodles.

When I got home with the food, I checked my blood, and the meter showed I was up in the 200s.  How’d that happen? (For you non-diabetics in the audience, you want to be somewhere around 100.  Anything lower than 80 or higher than 200 is not a good thing.)  So I dish up about half a container of noodles, pop a Metformin,  and take a big dose of insulin from the pump to compensate for the high starting blood sugar and the honkin’ serving of carbs.

After dinner, I went to work at my computer.  But I soon had all the symptoms of a high creeping up on me.  My mouth was dry, I was really thirsty, I was getting irritable, and I really, really had to pee -- the whole constellation of symptoms you live with before you’re diagnosed.  

I took my blood, and the meter showed 395.  This was not good.  

I took a big bolus of insulin and went out for a 20 minute walk to help bring it down.  When I got home, I had to pee again.  

Bad.  

I took another reading.  Crap.  My blood sugar was up to 422.  I can’t remember the last time it got that high.  

I took some more insulin and sat down to try to work.  Half an hour passes;  I have to go to the bathroom again, and the meter shows I’m now up to 480.  This is getting scary.  I don’t remember being this high before.  I bolus more insulin.  And that makes me nervous about how much insulin I’m taking.  It’s been 12 units in the last hour. I don’t want to rage bolus my way into a serious low.

Another 20 minutes pass, and I’m feeling really bad.  Nothing as specific as a low.  Just bad.  The thirst is terrible.  I simply can’t drink enough.  I check again, and my blood is up to 565.  I’ve know I’ve never seen a reading like that before.  

As a symptom of the high, I’m starting to get angry.  

I didn’t do anything that bad.  I had half an order of drunken noodles.  They were spicy, not sweet.  Why is this happening?  This isn’t fair….

If I can’t get that meter to head down, I’m going to have to go the ER.  In addition to being expensive, it will upset the kid, my wife, and my mother-in-law -- everyone in the house who worries about me.

I don’t take any more insulin, but I get on the exercise bike for 45 minutes.  But halfway through I have to stop to pee one more time.  

When I’m done, I take my blood again.  I’ve never been so happy to see 460 on a meter before. What’s more, my pump says it’s safe to take another several units of insulin.

The trend over the next hour or so continues down, but the work I was intending to do is a complete loss.  I can’t focus, I’m exhausted, and I feel lousy.  I give up and go to bed, knowing that sometime during the night I’ll pay the price for all the insulin and have a low.

Which I do.

Lows are scary because you’re on the ragged edge of passing out, but the treatment is easy as long as you have juice, or glucose, or Cap’n Crunch around.   The worst that will happen if you over-treat the low is that  you’ll end up pushing 300.

But a high that won’t come down is dangerous on its own, but it can also prod you into taking more and more insulin to the point that you could take yourself down into dangerously low territory.  And I must confess I don’t really understand the dangers of venturing into the 600s, though I know they’re bad.

What really scares me is I don’t really know what triggered this high.  I mean, I know I had a bad dinner, but it wasn’t the worst I’ve eaten as a diabetic. What combination of factors made my blood sugar soar this time?

I was angry and railing about the unfairness of it all when I went high.  I know the anger is a symptom of a high because my wife still talks about how angry I was all the time before I was diagnosed 10 years ago.  I’ve long ago quit worrying about fairness.  The world isn’t fair, and I have a pretty good life.  But I’m not going to have Thai noodles again anytime soon.  Fair or not.

*   *   *

Ralph is a professor of communication at University of Nebraska at Kearney, and has been diabetic since 2001.  He blogs at ralphehanson.com and is on the Twitter @ralphehanson.  So what are you waiting for?  Go connect with him on Twitter - he's awesome.  :)

November 07, 2011

Common Threads.

During my trips to the west coast these past few weeks, my blood sugars weren't my most cooperative pals.  Instead, my numbers were like a game of Chutes & Ladders (all the time), with rattled lows followed closely by spiking highs, over and over.  My Dexcom graph looked like Ms and Ws having a tea party, and every time I clicked over to the 24 hour graph, I wanted to hide the receiver in shame.  Because really, seeing 40's and 280's in the same day?  Three times over?  Fun times.

Last week, at BlogWorld, I had three blood sugars in the 40's over the course of five hours.  My blood sugar just wouldn't come up, no matter how many glucose tabs I chomped.  I treated the first low in my hotel room, dusting the desk with glucose powder as I shook the jar into my hand.  Watching the Dexcom graph, I assumed I was on the upswing, but I never fully crested.  I treated the second low in the shuttle on the way over to the convention center, during which time, my fellow panelist, Jenni from ChronicBabe, noticed what i was doing.

"Are you having a low blood sugar?"  (Jenni is an excellent conference wife - she knows that glucose tabs mean a low blood sugar is on tap.)

"Yeah.  I had one earlier this morning, but it hasn't kicked out yet.  I feel like I've eaten half a jar of glucose tabs."  I shook another orange tab into my hand and popped it into my mouth.  She eyeballed me while I wiped the dust from my lips.

"Do you want to try one?  I think they taste like crap, but I only eat them when I'm low, and everything's crap when I'm low."  I handed her the jar.

"Oh.  Oh, yum!  This is like baby aspirin.  But good baby aspirin?  I love it."  

"Dude, Chris likes them, too.  He's had a few here and there, and he's always a fan.  When I'm low, I just don't have enough saliva going on to make these things melt fast enough."

Chalky, orange ... and a big pill to swallow when your blood sugar is 43 mg/dL.

We finished the ride, but the low hung on, to the point where it was five hours after I had treated the first low in the hotel room, and I was still stuck under 70 mg/dl.  When Jenni and I took a break from sessions to check out the sponsor exhibit hall, we grabbed a table at the back of the room to check email, etc.

And I could not function, not properly, anyway.  The room was too loud.  The table felt like it was extra high and that I needed to stretch myself in order to put my elbows on the table.  My computer felt like 30lb weight on my shoulder, and my tongue felt swollen and glucose-sticky in my mouth.

I grabbed my meter from my purse and did a spot-check:  43 mg/dL.  Third time's the charm.  Almost crying with frustration and fatigue from being low for several hours straight, I threw the meter back into my bag.  I put two glucose tabs in my mouth at once and took a pear out of my purse, setting it on the tablecloth near my laptop.

"I'm sorry," I said to Jenni, knowing I was at the edge.  "I'm low again, and I'm at that 'I'm going to cry' stage.  Sorry in advance, and I'm also really [edit]ing pissed off to still be low, so I'm sorry."

Her eyes softened and she gave me a small smile.  "I'm going to sit here and not talk to you until you're fine.  If you need anything, let me know.  But I'm a little scared of you right now."

Her levity brought the world back into focus, and my shoulders relaxed. 

"I know.  I'm a lunatic right now."  I pretended to flip the table over with my hands.  "I'm ready to flip tables and eat glucose tabs and be all rage-filled."

"Eat your pear, babe.  We'll go when you're ready."

I ate; we waited.  And a special appreciation grew for my friend Jenni, and other people who deal with health stuff every day.  They get that this is just part of the routine with diabetes.  They understand, even though their health conditions aren't the same as mine.  The common threads of chronic illness run through every moment of every day, and "understanding" isn't limited to those living with diabetes. 

Everyone who is tuned in to their health "gets" it. We're all in this together, regardless of our health.  We are all patients

(Also, I need to start traveling with a new flavor of glucose tabs.  I've had it with orange for at least a year.)

Guest Post: Love Story, with a Dia-Twist.

Jessica and I met, after emailing a few times over the last few years, at the Diabetes Sisters conference in San Diego in October.  She is contagiously optimistic, and hanging out with her was awesome.  Today, she's guest posting about finding love after diagnosis.  Thank you, Jessica, for offering to post today!
Jessica and Kerri, at the Diabetes Sisters event.

*   *   *
He stopped by to make a fool of himself and with that began to mend my fractured world.
 
A little back story…
 
It was December 1999. I had the flu and the world was going to end (Y2K, anyone?) The clock struck midnight and the world continued on just as before but I could not seem to shake my ever draining sickness. I was about to go on long trip from Sunny California to Snowy Massachusetts to visit my Mom and Gram. I stopped by the doctor on my way out the door for a steroid shot to keep my asthma at bay. It wasn’t uncommon for my colds/flu’s to linger so neither of us was too concerned.
 
My three and a half week trip went a little something like this: Visit, nap, eat, drink, nap, pee, drink, nap, pee, drink, sleep, sleep, and sleep.  The winter seemed to be taking a toll on me. The cold weather was making me extra tired and ultra cranky. It also seemed to melt thirty pounds right off my bones. It had to be all the heavy clothes I wasn’t used to wearing.

When I returned home, my dad picked me up at the airport and took me out to dinner. I drank a full pitcher of water before our order was even taken.  My dad looked at my intake and said “You have diabetes”. OK Dad, whatever. I laughed off his statement but did still feel like shit so the next morning I went and had some long overdue lab work drawn.

Fast forward a few days to February 2, 2000. I’m lying down for my 25th nap of the day and my phone rings. It was my doctor calling, at 7:30pm at night, with my lab results.  (Um, don’t you have office staff to do this during the day?)

“GO TO THE HOSPITAL NOW!” she yelled into the phone.  “YOU HAVE DIABETES AND YOU ARE VERY SICK!!”
So I did what anyone would do in this situation. I took a shower, packed a bag, made a few phone calls, cleaned out the refrigerator and then drove myself to the hospital.

It didn’t sink in until I was settled my hospital room and the nurses, needles, I.V.s, burning banana bags and oxygen came out.  It was then that it sunk deep into my soul. Would I ever be able to have kids? I have to do WHAT with needles? Will I get to keep my feet? Am I going to die? I cried the entire night.

February 3, 2000. My new life path is full of thorny bushes and endless rain or so I thought. I couldn’t see past the fog of my own fears and sadness to notice when he walked into my room.

“Hello! I’m here to take you for an x-ray.” He said.

“I just got my lunch and my medicine. I’m pretty sure I’m supposed to eat. I’ll eat fast if you want to come back in 10 minutes.”

“Sure. I’ll be right back.” He strolled out into the hall.

Two hours later…

“Hello, again! Are you all set for your x-ray?”

“What took you so long? That was the longest ten minutes ever!” I snapped.

He gingerly moved me from my bed to the wheelchair making sure to not snag any of my IV tubing probably hoping I wouldn’t go all crabby pants on him again. He made leisurely chit chat through the halls of the hospital, during my x-ray and back again. I mumbled a lot of yes and no responses just wanting to get back to bed and wallow in self pity. He dropped me off in my room and said his goodbye.

Hospital shift change rolled around a few hours later and I heard the curtain by my bed rustle. He walked in and stood in front of me.  

“Do I have to have more tests?” I asked my eyes blurring with tears.

“Um, no. I am on my way home but I thought I would stop by to see how you are doing. You seem very upset. And to be honest, I’m here to make a fool of myself.” He shifted from one foot to the other.

I wiped the tears from my eyes and finally looked at this kind man who had shuttled me all over the hospital that day. He was my age, tall with dark hair and a lovely smile. Not too shabby. Suddenly diabetes no longer engulfed the room.

We talked for a while that night and he came back to visit me every day after. He brought me a chess set and tried to teach me how to play. When I was finally stable enough to head home we exchanged numbers and arranged our first date. I picked a d- friendly place for dinner and he took me to the movies. We held hands and when he brought me home we shared a shy, sweet first kiss at my front door.

He was now a constant in my life just like diabetes. He was OK with my diabetes and all that came with it. It brought us together after all. His acceptance helped me be a little OK with it too. My path of thorny bushes and endless rain was now a little sunshinier.

Our path together has not always been unicorns and rainbows. We have taken side steps, backward steps and even some swirly steps along the way. But we stuck with it and have persevered for nearly 12 years.  I look forward to every day I share with that kind man, who is now my kind husband. On the days when I get really down about diabetes,  I am reminded that I should be thankful for it because of the path it lead me to and the wonderful life that has grown out of a simple hello and a broken pancreas.

Fairy-tale ending.

*   *   *

Jessica was diagnosed with type 1 diabetes when she was 20 years old. She has used a pump for 10 years and recently added a CGM to help reel in the highs and lows. She lives in Southern California with her husband and two sons.  [Editor's note:  And she's awesome.  And has the prettiest wedding photo ever. :) ]

November 06, 2011

CWD 2012: Need More Input!

Searching for your FFL12 input! Even if you aren't Stephanie.Last year, Scott and I were lucky enough to be part of the Children With Diabetes "Friends for Life" faculty, and part of our role was to help create a track for adults with type 1 diabetes to attend that made us feel like we were getting support and information that suited our unique circumstances - you know - not kids with diabetes, and not parents of kids with diabetes (for the most part), but adults (for the most part again ;) ) with type 1.

Looking forward to Friends for Life 2012, Scott and I are, again, trying to compile some feedback from last year's conference to help shape the program for next summer. And this is where you come in:

What kinds of sessions would you like to see offered next summer?  Be specific - did you enjoy the parenting with diabetes session?  The emotional breakout with Jill?  The pregnancy discussion?  Do you want more on technology?  More about advocacy, both online and off?  More art therapy?  What, in your opinion, would be a stellar session for adults with type 1?

I understand that not everyone attends the FFL conferences, and that a lot of the time it comes down to financial assistance and time off from work.  Brainstorming ideas to help with getting more people to the conference is definitely a huge focus, but for the purposes of this post, it would be awesome to hone in on the session topics, speakers, and concepts that you think the type 1 adult community would benefit from.  (Phew!  That sounded so formal.  You know what I mean.)

So we're looking for information.  Perspectives.  Need more input, Stephanie!!   Your feedback is crucial, and very much appreciated.  Thanks, you guys. 

Edit:  And if you have feedback you'd prefer to email to me, feel free.  :)

November 05, 2011

Snapshots: BlogWorldExpo.

I've been at BlogWorldExpo for the last few days, and have had the opportunity to meet with some fabulous people in the social health online world.  There's more to say, but for now, a few photos:

All of this alt text ...
Patient bloggers rock!!

 ... is for Sara ...
Kerri and Jen (EndoGoddess), representing for Blue Fridays

... aaaaaaaaaaaaah.  And #Bes.
Russ Starke, Jenni Prokopy, Kerri Sparling, and Katie:  The patient perspective panel

November 04, 2011

Blue Fridays: One.

After a low blood sugar of 41 mg/dL, a failed Dexcom sensor, and not a lick of coffee yet, I'm still rockin' the blue for Blue Fridays

Are you wearing blue for Diabetes Month? Get your blue on!


Who Are the People in Your Neighborhood?

Last week (was it only a week ago?  My time-space continuum is completely off kilter these days), I was out in San Francisco for a quick visit at the Lifescan Town Hall meeting.  

Okay, I was actually in Milpitas, which his a nice little place that the driver from the airport inadvertently described as, "Why are you going there?" Not exactly the same excitement as the home of the Golden Gate Bridge and other sights I saw from the car, but close.  

I was asked to come out and talk about life with diabetes to a large group of Lifescan employees (they make the One Touch meters and they clearly like people who play guitar because Crystal Bowersox and B.B. King are their buddies, so I felt a little musically inept).  I wasn't asked to talk about my meter, or my pump, or to pimp out any partnerships, etc.  They just wanted to hear about life with diabetes.  Plain life.  Real life.

Because I don't have a formal bone in my body (all of my bones are in sweatpants and baseball caps), and because I didn't have any airs to put on, I just stood on that stage showed them our community.  I showed them some of our blogs, and talked about some of our meet-ups.  I showed them that while life with diabetes can be challenging, the power of a diabetes community makes life with diabetes inspiring.

"I didn't know many people at all who had diabetes, like me, growing up.  But now, I think I know more people who don't make their own insulin than those who do.  That's a paradigm shift, and one I'm very grateful for."

And I impressed upon them that they are part of this diabetes community, as well.  Initiatives that serve our needs (medical device companies, drug companies, advocacy organizations, behavioral health organizations, local JDRF and ADA chapters, etc upon etc) expand the boundaries of the greater diabetes community.  We, as PWD, are less alone than we ever have been before.  

It's really an honor, being asked to describe our community to people who are just getting to know us.  I feel this strange rush of pride when people ask me how the Internet has affected my health.  "It's made a world of difference;  it's changed the scope of how I view my diabetes, and my potential."  I love talking about the people I've met through the blogosphere. ("Cara's accent will melt your heart!"  "And this is Christel … her baby's smile will melt your heart.")

And I love correcting people:  "So these are your internet friends?"  "Nah - they're just friends."

Diabetes Month is a 30 day exercise in spreading awareness about diabetes and hopefully making a difference, big or small.  Whether you're sharing your personal story, or the brutal facts about this disease, or working in some capacity to make people more aware of this condition that so many of us live with every day, you are making a difference.  I'm proud to be a part of a community where Diabetes Month is every month, and we're all truly in this together.

Now I want to talk about baseball.

[Disclosure:  Lifescan covered my lodging, travel, and suited me up with a very nice lavaliere microphone while I presented, and Animas provided an honorarium for my presentation.  But, as always, the opinions expressed were mine.  And the community is ours.]

November 03, 2011

Uncle Traveling Matt ... Sort Of.

This guy rules, because he's super laid back and he ROCKS those green shorts.In the last few years, I've done a considerable amount of traveling, and this fall and winter will have me gone every week until mid-December.  This means a lot of air travel.  And trains.  And plenty of not-being-home. (But thankfully, Birdy and her daddy are enjoying some quality time together.)

I wish I was a more fluid traveler (maybe I should try a boat?).  But sadly, I am no Uncle Traveling Matt.  That guy was able to tool around on his little Muppet bicycle and explore the land of the Silly Creatures, never giving much of a care about how he got there or what he packed.  He was mostly concerned about sending postcards to Gobo.

Me?  I'm a maniac.  I am a fastidious packer for all of my trips.  I used to bring a gigantic bag with enough socks and underpants to outfit a minimally-clad army, but I've learned to streamline the process in the last few years, and as a result, it's always an exercise in "What did I forget?"  Of course, I don't play the "What did I forget" game until I'm about to walk out the door, or while I'm on that anxiety-inducing ride to the airport, where I convince myself that I left my cell phone/pump/license/arm/house keys at home and I have to keep checking, repeatedly, to ensure the safety of these items.  (The arm is easy to check for, thankfully. I just waggle it around a bit while I search through my bag for the other stuff.)

What always trip me up are the health-centric decisions.  Whether I'm in Philadelphia for two days or in Los Angeles for five, I bring back-ups of my back-ups.  Three day trip?  Three new infusion sets.  Three bottles of test strips.  A brand-new bottle of insulin.  The in-case-of-pump-failure insulin pen.  And let's not forget the corneal abrasion army of tools, including my (pass me my walker) Muro 128 gel, numbing drops in case my eye rips, and a sleep mask if all hell breaks loose.  

All this crap does not a light suitcase make.  

And then there's the mental dance of when to change the time setting on my pump. (When I'm traveling across time zones, I tend to change my pump as soon as we take off.  There's no rhyme or reason to this, but it's my routine.)  I also keep a close watch on my CGM graph, because it's almost comical to watch it SPIKE up after apologizing my way through the security checkpoints.  And then there's the constant water consumption and the airplane Jane Fonda'ing, all in pursuit of staying healthy while traveling.  

I seem like a crazy person, with all the planning ahead and bringing-of-stuff.  But I can't help it - it's the combination of my type 1 and my type A personality (would that be the Type D personality?).  It's part of my travel routine that I can't deviate from.  Regardless of where I'm going, all this health stuff comes along with me.  (And it always tries to steal peanuts from the flight attendants.)  It makes for a long mental packing list.  It makes me test the limits of airline carry on policies.  It probably puts me on a no-fly list in some circumstances.

But then again, I'm one of the Silly Creatures.

November 02, 2011

From Abby: The Pee Chronicles.

Fun times with the little-lab-ladyI'm en route to Los Angeles for the BlogWorldExpo conference, where I'll be speaking on a panel about what companies can do to support patient needs.  While I'm flying the friendly skies, Abby has offered to share a few stories today, starting with the one about ... pee?  Abby went in for routine labwork and learned a little bit about "that diabetes smell."  Read on and you'll see what I mean ...

*   *   *

Last week, I went in for my yearly lab work. You know, that visit where the little old lady asks which arm you'd like to use, and when you show her your pathetic excuse for veins in your left arm, she proceeds to stab some steel into your scarred up right arm where the only vein in your body lives? Yeah that one.

That visit where you have to drink 48 bottles of water beforehand because she's going to take out 18 gallons of blood to make sure every little thing in your body is still functioning properly, with the exception of that silly pancreas.

I suppose I should back up a little, and tell you about the part where when I walked into the lab (which is a floor down from my endo's office) the little lab lady was coming out of the bathroom in a hurry. I didn't ask questions, but this is important for the rest of the story.

After the antecubital puncture [Editor's note:  Only Abby the RN would bust out a word like that one in a blog post], the little-lab-lady hands me a cup and says, "Here, please fill this.  The bathroom is down the hall on your right."  First, okay great - love peeing in a cup. Secondly, been in that bathroom plenty of time, but thank you none-the-less. I wander down the hall, ready to prove my kidneys are just fine, and walk into the bathroom. 

I won't go into detail here, but the smell of that room made me almost pass out ... and that's saying something since I'm a nurse and I've worked in an advanced Alzheimer's wing of a nursing home. Thanks to 13-years of diabetes and a history of peeing-in-the-cup, I finished this task in record time and high-tailed my way out of that tiny smelly room.

So here's the point of the story ...

When I handed my perfectly filled cup wrapped in paper towels (pee is gross to look at) to the little-lab-lady, she said to me, "Does the bathroom still smell terrible?"

"Yeah, it's pretty bad," I replied.

"Sorry about that.  There was a man in there before you from the hearing center. A diabetic ... you know how that smells. I've been trying to clean it up but that smell lingers."

Dumbfounded look on my face with absolutely no words, I replied.

All I could come up with to say at this point was, "Um, well, am I done here?" and I walked out.

And from now on I will always be self-conscious about how my pee smells - with or without asparagus.

*   *   *

Do I even want to let my mind wander on this one?  Abby, what does "that smell" smell like, and once you tell me, will I be able to un-hear it?  Also, did this lady know you were a PWD?  ;)

November 01, 2011

Diaversaries and Cake.

A few weeks ago, I posted a photo and part of an email from a reader who had made an insulin pump-shaped cake for their daughter's birthday.  In that magical way of the Internet (where cats haz a cheeseburger and lovely little bean people talk about diabetes), another family with a kid pumping insulin caught the post, and baked up a little bolus of their own.

So, to kick off Diabetes Month here, I connected with Gwyneth's mom, and Gwyneth emailed me her perspective on what it's like to mark her first diaversary, which is TODAY.  At the start of Diabetes Month.  How's that for timing?  

Another awesome insulin pump cake.  :)

"My name is Gwyneth and I'm from San Luis Obispo, CA. I was diagnosed with type 1 on November 1, 2010. I thought that this would be the end of the world but it turned out to be awesome (most of the time). I am in 4th grade and I just turned 10 two weeks ago. This Tuesday I will have my official 1 year 'diaversary.' I celebrated it along with my 10th birthday party. I loved the insulin pump cake my mom made. I wanted my cake to look like my Animas Ping because I don't have to get shots anymore and I wanted to celebrate that. My pump makes things easier for me and I feel like I have more freedom now. Everyone at my school knows that I have the pump (they used to think it was an iPod) and they support me a lot. They loved my pump cake and sang me Happy Birthday, and then Happy Diabirthday!

The best part about being type 1 is finding out just how much my friends and family love me. My five year old brother used to run out of the room when I had to test or get shots but now he tests me on his own. This is good because he just got diagnosed with type 1 a few months ago. He is not on the pump yet but he will be and when he is, he'll get a pump cake, too!"

Gwyneth, if you are able to hang on to even a wee bit of that sunny disposition, you will be okay.  Thank you so much for emailing me, and happy diaversary!!  You have a whole community of people with diabetes who are there for you as you grow up.  xo

(You can read more about Gwyneth and her little brother at Elaine's blog, Diabetic Sunshine.  Thanks again for sharing your story, you guys.)

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