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April 30, 2012

Diabetes: Improv is Key.

The best, most all-inclusively versatile bag I have is my camera bag from the Kelly Moore Bag Store.  I bought it a few months ago and it hits every mark for me:  the Classic holds Birdy's baby essentials (diapers, wipes, sippy cup, and snacks), my diabetes garbage (meter, glucose tabs, insulin pen, backup infusion set), and the camera stuff I insist on carrying around (Nikon D40 with lens).  While I'm able to travel to Dubai and back with only a carry-on, I carrying about the same amount of crap with me on a daily basis.

It's the most wonderful bag.

Which is why last Wednesday, as I was walking along a footbridge towards the London Eye and the strap of my bag snapped away from the metal hold piece, my heart sank as quickly as the bag tumbled off my shoulder. 


This is how the bag should look.

"You okay?" my friend asked as I clutched the bag with both arms.

"Yeah, I just need a quick second."  Pulling the belt off my raincoat, I snaked the belt through the loops that should have been connected by the metal latch until it held tight.  "It's fine now."

Improvisation.  It's sometimes the name of the game when it comes to diabetes.  Ladies with insulin pumps have surely Macgyver'd their way in a few little, black dresses.  Runners with diabetes have found ways to keep their supplies and their feet light.  Ever had a low blood sugar where you find yourself eating 18 month old fruit snacks from your glove compartment?  Ever had a high where you have to pull a rogue unit or two of insulin from your pump reservoir and shoot up with a syringe?  Plan ahead all you'd like, but there will be diabetes moments where you just have to wing it.

It makes sense: our pancreases go pfffft and we're charged with finding ways to keep going without producing our own insulin.


Locked and loaded until the bag can be properly fixed

Stuff breaks?  Find a way to bandaid it.  It might not be a permanent fix, but it's enough to hold until there's a better option.  Sometimes you have to improvise.

April 25, 2012

Giant Benjamin.

That's a big ol' Ben there.

Here in London.

Everything.  Is.  Wet.  But since it's not Rhode Island rain, I'll take it.  It's fancy rain.  British rain.  Might be spelled "raine," in an olde worldy-style.

Have seen the Tube, poked around Buckingham Palace, walked in the pouring rain over Tower Bridge, and realized that Splenda has a strange granulation to it here.

(Every time Birdy tells someone where I am, she says, "Mama in Lemon."  I miss my Bird.)

Exhausted and jet-lagged, but loving what walking around the city does for my blood sugars.  (A 191 mg/dL was beaten into submission by a conservative correction bolus and a long walk.) The time change isn't being kind, in terms of lows, but I've dialed down the morning basal in retaliation.

Looking forward to meeting some UK PWDs tonight at the Tweet Up!

I will have sentences that make sense soon.

April 24, 2012

Guest Post: Parenting Passions.

I first met Bennet ... wait a second, where did I first meet Bennet and the rest of the Dunlap crew?  Where ever it was, I've had so much love and respect for the Dunlap family for years.  They're a team, and a good one. And despite the fact that half of the Dunlap crew is living with diabetes, it doesn't dictate or define who they are.  Today, I'm so happy - honored, really - to be hosting a guest post from Bennet about parenting diabetes.

*   *   *

Team Dunlap at Disney

My goal of parenting kids with diabetes is to make their passion in life the my first priority and to bring diabetes along as second. I don’t profess to be the model parent or a expert in diabetes (but I have a little background in both, as we have two type 1 teens, who, for the most part, talk to us).

In my view, type 1 has to come second to living life. Not ignored, but in its place. I am not saying it is easy. It takes hard work to get it there. Here is a tip to knowing that you are on the right track: You forget the diabetes and do some other parenting issue, like rush to school late without a shot.

Normally, new diabetes parents kick themselves for forgetting the insulin. They pile on the guilt and have a lousy time. I know I did. I know the day we discovered a second diagnosis of type 1 in the family, we forgot to give the kid who already was a year into it his insulin.

I suggest that in that "forgetting," there is room for a small pat on the back, too. Diabetes was second. Ideally not everyone forgets the insulin like I did. Yes, I still had to get the insulin into who ever needed it. But pause and think about the "new normal" that this represents; something other than diabetes was more important.  (Well okay, not the case of a second diagnosis. There, diabetes made me forget diabetes but in the school case, life and goals were at least equally pressing.)

I think it is okay to say to yourself as a parent, "I will help manage diabetes. It will continue to suck but it may not be all consuming. I will always worry about diabetes but  I will pass the responsibility of managing as my child is ready for it. In all of that, I will not lose sight of the goal."

Our pre-diabetes goals for our kids were: college, a passion in life, a job in that field, and mostly having them moving out of our house. Why would diabetes change those? If the goals have changed, diabetes wins.

Don’t let it win.

Be involved with your kids passions. Our younger T1D is in the process of defining her passions. I think adolescence is brutal enough without blood sugar variations but she has both. She is also delightfully creative. She draws, paints, makes wearable replications of anime robotic prosthetics (Comic Con here she comes) and is learning to sew. Diabetes doesn’t fall into the passion category. That is cool. Maybe, as we work on the creative stuff, the idea that more creativity flows with incrementally better diabetes effort will become part of the process.

The older kid with diabetes is a performer, an actor. He has been since he was knee-high. He would watch the Princess Bride as a tyke and act out all the heroic parts, about a quarter second before they came on screen. I bet that movie is so ingrained into him that he would still involuntarily twitch at cues to some of the scenes.

No effing way would I let diabetes change those passions. Keeping the acting dream alive meant putting diabetes into second place. In part, that meant going to Children With Diabetes’ Friends For Life and having Jim Vail challenge the boy to become confident in his self-management. It meant learning to check blood before driving. Then learning to drive into Philadelphia for acting classes. (It also meant having the car towed for illegal parking on the first solo mission into the city.) All those things contribute, in some way, to the goal of acting. I think the same will be true as the creative sewing, drawing interest are distilled into the younger one's passion.

In auditions for college acting programs, my son was asked about a hard life lesson learned. "Let me tell you about type 1 diabetes," he replied. I hope his sister will have an equal, if different, love of life, an inspiring portfolio of original work, and the feeling that diabetes is not preventing that passion.

I think my son feels that part of caring for the character on stage means caring for the actor giving the performance. Sometimes I see a little pump tubing sneaking out of a costume at a show. What I see is a performance and that type 1 diabetes is being dragged along, second to his passion. As for colleges, he has been accepted to every program he has auditioned for. I assume because his passion is visible to others in ways as clear and hopefully as subtle as pump tubing is to me.

I hope that while her diabetes may vary, my daughter the same feeling about her life’s loves.

*   *   *
Bennet and his wife Kimball have are the parents of four kids. The younger two are type 1 teens. The youngest was diagnosed in a Disney World hotel. That the family somehow worked out a relatively uninterrupted vacation in Disney while starting her life with diabetes speaks to their priorities.

Bennet tries to help families live better with diabetes. He is an ADA Safe at School advocate. He writes the blog Your Diabetes Many Vary, created the site DisneyWithDiabetes, and with his kids produces the videos at TheBetesNOW. If you happen to know anyone looking a passionate advocate for diabetes families, Bennet is finishing a masters degree in health communications at Boston University in a few months.

April 23, 2012

What Do You Mean, Yours Isn't Like This?

What do you mean, your car door doesn't look like this on long car trips?

And what do you mean, your shower shelf doesn't have one of these as a discarded decoration, now and again?

Diabetes:  it gets on everything.

April 20, 2012

Old School Diabetes: Med ID.

"We bought a new fridge," my dad said to me over lunch.

"Oh yeah?" I said out loud.  "We had that thing forever, right?" (Refrigerators are the cockroaches of kitchen appliances. Things just don't die.)

"Just about.  But when the guys came to deliver the new fridge and take the old one away, this was somehow wound around bars in the back."  

He handed me a medical alert bracelet that I remember wearing, with the red, raised Staff of Asclepius (or, as I called it when i was little, "that snake on a stick") that used to get caught on my pony tail and the pocket of my jeans. The metal links were thick and sturdy, designed for the repeated destruction attempts (and I think I've broken no fewer than seven on the emergency brake in my old car). It was beaten up, from years on my wrist and then a subsequent decade under the old refrigerator. 

I brought it home and put it in my jewelry box, alongside my Clara Barton Camp "Bartonian" pin.  Twenty-five years with diabetes has given rise to some interesting collections of memories, some that live in my jewelry box, some that hide under the fridge for decades, and some that stay tangled up in my heart.

"Thanks, Dad."  

April 19, 2012

Gassing Up.

Gas.  Not the rear end kind, but the petrol kind.  What?  This is alt text - you wanted it to be serious?  (Hi, Sara!)Tuesday night was hot.  (Not in an exciting, sultry way - it was hot in a sweaty, too-warm-for-April, don't-know-how-to-dress kind of way.)  I was heading to Fairfield County, in Connecticut, for a meeting with their local JDRF chapter, and stopped at a gas station in Rhode Island to fill up my car before heading out.

"Three ninety-nine a gallon? Holy crap," I said as I stood outside of my car, holding the gas nozzle while it filled up my tank.  The sun was hot on my shoulders, even though it was already three in the afternoon. 

"Miss?  Your seat belt is stuck to your ... hold on now ..." 

The guy on the other side of the gas pump leaned in and peered at me while I was gassing up my car.  

"I'm sorry?"  I asked.  "My seat belt is stuck?"

He was talking to me, but staring directly at my arm, where my insulin pump infusion set was nested into the back of my arm, the tubing snaking underneath my sleeve and to the pump on my hip.

"I thought it was your seat belt but it appears that you have a ... a big thing on your arm?"  He smiled, bringing his eyes back to mine.  "I'm assuming you know about this ... thing already?"

I laughed.  "I am familiar with it, yes.  It's an insulin pump.  I have diabetes.  It's okay."  (I don't know why I always add that caveat of "It's okay," or "I'm okay," to every moment of disclosure.)

"Ah. You must have it bad, then."

"I don't know anyone who has it 'good,' but I use the insulin pump instead of taking insulin injections.  it's good for me."  I answered, finishing with the gas nozzle and capping up my gas tank.

"Well that's good, then."  He finished up with his truck.  "I didn't mean to pry - I just thought you were stuck to your car by the seat belt, and I didn't want you to hurt yourself walking away."

"Thanks.  Have a good day!"

"You, too.  And just remember - if you eat well and exercise, you might be able to come off that pump sometime and be less of a burden on the healthcare system."

And he drove off before I could grab him by the throat.

April 18, 2012

From Abby: Little Bits.

Diabetes advocacy and education moments aren't limited to coming from certified diabetes educators, or going to a group of people who signed up for a seminar.  Sometimes it comes in little bits.

*   *   *

You can teach about diabetes everywhere. Today I got a phone call from my insurance company to tell me that my pump supply coverage was approved. While I already knew they would be calling to confirm, since I had called the day I was officially covered to find out how much of my paycheck would go toward the tiny plastic pieces that keep me alive, it was still nice to hear that the process was complete (for now).

But I was a little surprised with the insurance company rep asked if he could ask me a question.

Of course I responded with, "Yeah, sure! Absolutely" because I love answering questions. (Hello, I'm a triage nurse.)

"I see that you use a Medtronic pump. But I also see that you're using a continuous glucose monitor made by Dexcom ... is that correct?"

"Yep, sure is."

"Oh, well I thought Medtronic made that too? I thought you can't use a Dexcom system with a Medtronic pump?"

"Well, they aren't integrated - you're right, but I tried Medtronic's similar product and it really didn't work for me - so I carry both with me. Which can be a pain, but it really works for me and I've had the Dexcom for almost a year now."

"Interesting. I'll have to tell the medical director that these products can be used at the same time and that since you were already approved for the Dexcom before that we should approve you again - whenever the request comes through."

"Well that would be really super if you could do that, thank you."

Sometimes little bits of calm, reasonable education can get you far. Or at least make the insurance process a little easier to navigate.

*   *   *

Educating, one phone call at a time.  Have you ever had an unintentional moment of advocacy?

April 17, 2012

See Food Diet.

"Oh, I'm on the sea food diet." 

"Oh yeah?  What's that?" 

"I see food, and I eat it!"

RIMSHOT.  SO COMICAL.  This joke irritates me because when my blood sugar is way out of range, this terrible punchline becomes true.  I'll hoover up the contents of every cupboard in my kitchen.

There's something about being at either end of the blood sugar spectrum that instigates mass consumption of calories.  When my blood sugar is tanking (especially those middle of the night lows), I'll eat through half a package of chocolate rice cakes (I love those things) or devour the better part of a package of stale Peeps (not that it's happened while on a Google hangout or anything) before I'll pause and assess the situation.  It's a desperate clamoring for calories - anything - to bring my blood sugar back into a comprehensible range.

A similarly ravenous, but more grazing, hunger takes over when I'm high.  High blood sugars (really high, like over 250 mg/dL) make me crave fruit and juice and cloyingly sweet foods.  And I don't want to cram them into my face in pursuit of relief, but more because my body is telling me to eat, eat, eat even though my blood stream is clogged with sugar.  Highs trigger hunger, at least for me, and it's very hard to squish that inclination to eat.

Hunger due to actually being hungry is a strange concept.  Sometimes I'm hungry because I'm cruising around with a high blood sugar.  Other times, it's because I'm low.  Being hungry because I'm actually hungry wasn't something I felt until I went on the insulin pump in 2004, because prior to that, I was eating in accordance with the actual peaks of my insulin.  (Old school NPH and Regular, back in the day.  Holla.)  I remember some of the first times I felt legitimately hungry due to a lack of food, and how strange it felt (and also how it felt like a low blood sugar).

Yesterday afternoon, around one in the afternoon, this strange headache settled in and my stomach started to ache a bit.  

"I'm high, I think," I said to Birdy, who was trying in vain to vacuum the front lawn with her new birthday vacuum.  (Kid wanted a vacuum cleaner; what can I say?)

"My vacuum, Mama!"  

A quick poke of the finger showed a blood sugar right in range.  And then I remembered that I hadn't eaten since breakfast.  And that coffee didn't technically count as a snack.  (But it should.)

"Mama needs a snack."

"Hunn-ree?"

"I'm totally hunn-ree, lady.  Let's have some chompies."

"See-food" diets aren't for me.  I'd rather eat when I'm hunn-ree.

April 16, 2012

Twenty-Four.

Birdy,

Of course we marked the day with a mustache - what other way is there for a two year old to celebrate her birthday morning?  (Thanks to Mr. Potato Head, or as you call him - "HEAD!" - for lending out the 'stache.) 

Mustached Birdzone

You're a kid now.  Legit kid, with babyhood well behind you. I don't know what's happened in the last week or two, but the fast-forward button has been duct-taped down on you. All of a sudden, you're BIG. You are talking a blue streak (no idea what that means ... hang on ... I Googled it) and I can't keep up with you. You call me "your best mama" (which makes me wonder who these other "not the best mamas" are), and you've gone into time out twice at the same Applebee's (the waitstaff must think I'm the meanest mom ever, but by the time we were done time-outing, everyone could count to fifteen, damn it).  You sing along with your favorite songs (Somewhere Over the Rainbow, Coldplay's Paradise, and you and I both are working out the lyrics to Channel Cairo) and you actively try to calm yourself down when you're upset, by saying, "Cry? No cry. Okay."

"Okay!" is your favorite word; you use it liberally, and in ALL CAPS.  "Do you want to have oatmeal?" "OKAY!" "Would you like to play outside?" "OKAY!" Every time you say it, you manage to make it sound like the preceding question was your idea. And you've taken to calling your parents (ahem, us) by our first names. Especially in the morning, over the video monitor, when we're slow to evict ourselves from our bed. "Dada! Dada!" And you wait for a few seconds, then: "CHRIS!" (Well-played, kid.)

Yesterday was your second birthday, and we celebrated surrounded by friends, family, and lots of love.   You have a wonderful extended family, Birdy, and they love you very much.  (And they were also patient with my attempt at Elmo cupcakes, which looked decent enough before we went to bed on Saturday night, but somehow contracted the Rage Virus on the overnight, so we woke up to zombie Elmo cupcakes with bloodshot eyes.  Happy ... happy birthday? We did, however, make the vegetable tray a la Elmo, and that worked out okay.)

You ate the zombie Elmo cupcake, though.  And even though you looked like a lion cub devouring a gazelle, you enjoyed every nibble.

We enjoy a good gazelle now and again.

You're my best friend, my whole heart, and my littlest Bird who is getting so big.  (Even your sneakers are getting so big.)

I love you so much you make me stupid.

Even though we've only known each other for two years, you've been in my heart forever.  Happy birthday, Birdy Bird. I love you!

xo,
Your Mama

April 13, 2012

Food Conundrum.

My inability to cook is the punchline to many jokes in my family, and it's making my culinary credibility limited to that of chips and soda.  For example:

"Easter is a potluck. Do you want to bring chips and soda?"
"You guys should be at the cookout at 2 pm.  Bring chips and soda?"
"The party starts at noon, but we have everything we need.  Can you just bring a few bottles of soda?"
"What can you bring? Oh, how about soda? And chips?"

I'm sensing a trend.

Not having any cooking talent serves me well when it comes to obligatory "whipping something up" (as in, no one ever expects me to, unless it's 2 am after we've come back from the bars and my husband and my friends want brownies ... NBF, I'm looking at you), but on the diabetes front, it's not cool. 

My blood sugars fare reasonably well when I'm sticking to a dietary routine, but I'm bored, bored, bored TO THE MAX ALL CAPS with everything I'm capable of cooking.  Eggs?  Bah - I scramble them and hard boil them and over-easy their asses, but they're still just eggs.  I love turkey and cheese sandwiches, but I don't like eating bread that often, and rolled up tubes of turkey and cheese just makes me feel like I'm smoking the most unreasonable cigar.  Soup?  Awkward when it's getting warmer outside, because sweating while eating isn't the loveliest notion. 

Being a crappy cook is giving me a food conundrum.

Thankfully, I have the Internet.  And a quick Googley-eyed search gives rise to lots of lower-carb recipes. (Going lower-carb my preferred method of eating because, for me, it requires less insulin, gives me fewer post-prandial spikes, and keeps me from ballooning up like a blowfish ... which I've eaten, even though I thought blowfish was poisonous, and yes, I learned this all from an episode of The Simpsons. /digression) 

It's just the lack of desire to learn to cook.  I have no interest in it.  I'd rather go do yardwork (I bought a saw recently and it's excellently fun - makes me wantLow "crab" meals.  Evil crabs.  Spellchecked crabs. to be a lumberjack) than spend time in the kitchen trying to figure out how to use the stove.  However, when one of the pillars of my disease management is food, my anti-chefitude makes meal-planning boring and routine.

I'm aiming to diversify what I'm eating, while sticking to the low-carb plan.  And I'm looking for suggestions ... do you have websites that you check out for meal ideas that aren't complicated and don't require a lot of talent?  How do you keep your diabetes from going off the rails without eating the same thing, a la Adam Morrison, every single day?

In the meantime, I'll be eating hard boiled eggs ... and bringing chips and soda to every family gathering.

April 12, 2012

Bullets and Elmo Cupcakes.

Oh no ... more bullets?  

  • We're in the midst of wrangling details for Birdy's second birthday party, and it's, thankfully, less chaotic than last year.  The party is shaping up to be smaller and more relaxed, and all the crap we bought for last year's party is still useable this year.  Which is good.
  • Only Chris herniated two discs in his back while saving a 400 lb basket of kittens from a fiery inferno getting rid of some furniture, so he's trying to recover while I'm fretting about Elmo cupcakes.
  • Because yeah, we're making three dozen Elmo cupcakes.  And by "we," I mean "me." And by "Elmo cupcakes," I mean "a bunch of red food coloring mushed into frosting that is strategically arranged onto cupcakes in hopes of resembling a face."
  • That should be fun.
  • I haven't updated my blood sugar logs in over a week, which sucks because it only takes missing a day or two for me to fall off the wagon.  I need to get back on that today in order to stay on top of things.
  • With "on top of things" being a bit of a stretch, since I've seen some lingering 200's in the last few days that I could do without.
  • It doesn't help that my skin is freaking out from diabetes devices these days. Every Dexcom sensor is leaving a red ring, and infusion sets are taking a day or two extra to heal once they're pulled. This happens every season for me, when the weather either starts to cool down or warm up, and it's irritating.  My diabetes real estate is worn out.
  • Eh.  Keep moving forward, I guess.
  • I had the best dream I've ever had, about these teeny little elephants that had invaded my flower garden and were struggling to climb over the mulch, letting out these high-pitched grunts and adorable burps as they struggled.  (Burping elephants = cute overload.  But an elephant with a head cold would be the worst.)  I woke up in the middle of the dream, tested my blood sugar (because surely tiny elephants means a low blood glucose but no, I was 119 mg/dL), and was thrilled to fall back asleep and slip back into the same dream.  I want to find an illustrator who can crawl into my brain and pull these wee burping critters out by their trunks.  They're ultimo-squee for me.
  • And I'm trying to figure out the best things to do/see while I'm in London at the end of the month for a Pharma Times Digital Club meeting.  I've never been to London, and the most I've seen has been the airport (which apparently makes me low - it's like the Target of traveling). Any suggestions as to what to check out while I'm there?
  • If you know me, musically, you know I'll listen to the same song, over and over again, until it's just about inked onto my skin (except the lyrics are always wrong).  This week, it's the few tunes out from Channel Cairo that are on repeat.  If theses songs were on a tape, I'd have listened to them so much that the A side and the B side could be heard simultaneously, with the tape worn so thin.  Underrated Grace makes me all sorts of happy.
  • Birdy has taken to pretending to be a "doctor" for a stuffed animal cat.  This morning, I caught her trying to stick a Lego to it.  "Puuuump for kitty, Mama."  She's learning.
  • But then I caught her filing a bucket with Legos and then pouring the bucket onto her head.  So there's that.
  • I just need to keep calm and do a blood test.  ;)

April 11, 2012

Looking Back: What I Want Her to Know.

Revisiting a post from last November, because it's all still true.

*   *   *

After a tough low this morning: 

I love my daughter, too.

I want her to know that she was wanted so much, well before she arrived, and that her parents went to great lengths to make sure her arrival was as safe as they could manage.

I want her to know that those moments when she has to wait while I test or while I bolus or the times when I have to set her in her crib and gulp down grape juice while she stands there, her big, brown eyes staring at me while her mouth tugs into an impatient smile, that I love her and I just need to deal with diabetes for a few seconds so I can be the best mommy I can.

I want her to know that if my eyes don't get better, it's not her fault.  It's not my fault, either.  The fault lies with diabetes.

I want her to know that the reason I'll sometimes frown at a soggy diaper or a voracious pull from the bottle isn't because she's being "bad" or doing something wrong, but because I'm worrying.

I want her to know that just because I have it, and because some of her best buddies have it, doesn't mean that she will have it.  But I also want her to know that if a diagnosis of any kind ever touches her life, we'll manage just fine and take the best care of one another that we can.

I want her to know that when she smiles at me, it's like a thousand online communities inspiring me all at once.  That the hope of her was once the biggest incentive to improve my health, only to be superseded by her arrival in my arms.

I want her to know that regardless of what she may hear about this "diabetes," her mama is going to be just fine. 

Just fine.

April 10, 2012

Rules Of Love.

In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as "The Hammer"), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.

During the course of an email exchange, The Hammer sent me a page from an old health book that he found - the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom. 

Excerpts:  

Only four rules. The shortest rule list a PWD has ever seen, to date.  About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There's something about this chart that makes me both roll my eyes and then picture a diabetes Punnett's Square.  Love is a tangled web as it is - plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol' Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured "blameful" and "blameless" diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I"m the only diabetic in my entire family, of any kind ... /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I'm frustrated.  It's a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more "real."  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called "medical books" from the early 1940s has blown my mind in a way that Steel Magnolias never will. 

We have come a long, long way.  And I'm grateful for that.

April 09, 2012

From Abby: Medtronic DAF.

Last week, Abby was in California for the Medtronic Diabetes Advocates Forum, visiting Medtronic for the first time and meeting so many members of the DOC, in person, for the first time.  Here's Part One of how things shook out, from her perspective.

*   *   *

This year, I was fortunate enough to be able to attend the 2nd annual Medtronic Diabetes Advocates Forum, representing SUM. There were a few key thoughts that I'd like to share about this experience, aside from how completely awesome it was to finally meet a ton of DOC people in real life (more on that later). 

I felt hope. Sitting through a lecture about the technology on the horizon gives me so much hope for the future of what our lives will be like with type 1 diabetes. First off, on a technology tip, the Enlight sensor is in reach. The folks at Medtronic wouldn't commit to a time frame, but I got the hopeful feeling it'll be available to patients sooner rather than later. This sensor gives me hope, because it's a step in the right direction. Medtronic has taken our complaints as a patient whole (ex. the sensor is too painful, it's not accurate enough, and it's scary to insert) and they have fixed these problems. THEY FIXED WHAT PATIENTS WANTED FIXED. This is really all I can ask for as a patient, in my opinion.

I also have hope, because sitting at dinner with the director of All Things CGM at Medtronic and seeing the tears in his eyes as he talked about giving parents piece of mind with the mySentry on their nightstand as their child sleeps in a nearby room. I believe that there are people with no personal ties to diabetes, but who truly care about our future.


The attendees of the 2nd Medtronic Diabetes Advocates Forum

I felt guilt. I feel guilty about so many things. After Dr. Fran Kaufman's presentation that focused on the children in the world who struggle to stay alive with type 1 diabetes, who are thankful for every unit of insulin they are given, I feel so incredibly guilty for suggesting someone owes me a piece of technology that takes every ounce of effort out of this disease. I feel guilty about the opportunities I've been given in my life that have lead me to a stable job with health insurance while there are people in my own city who can't afford anything more than one vial of NPH each month.

I felt so thankful. Looking back on the thirteen years my pancreas has been officially "on strike," I have seen incredible advances in the treatment of this stupid disease. I started on NPH and Regular insulin, I ate three meals and three snacks a day. An A1c of 8.0% or less was the goal. There was a very real chance of kidney failure being my demise. Today, I have a machine that is casually stuck to me that infuses insulin - aka "keeps me alive" - without me paying an ounce of attention to it. I have another patch on my skin that alerts me when my blood sugar is out of the range I want it to be in, without me stabbing my finger every time. At this event at Medtronic, I was lucky enough to see a picture of a single, invasive that housed both an insulin infusion cannula and a sensor wire. I talked to a team of people who are creating the technology for an Artificial Pancreas System. How can I not be thankful for what I have, and what I've seen? 

And I felt excited!! I am so excited for the future of diabetes technology. While I feel a potluck of guilt, gratefulness, and hope, a big part of me is just so freaking excited that in the very near future, there is a real chance that there will be a "technology cure" for type 1 diabetes. And heck, I'll take a cure in quotes over no cure at all.

Overall, I had an amazing time. I met people who have my future in their hands (well, sort of) and people who are sharing the same struggles I deal with every day. I carb counted a giant cheeseburger with a group of used-to-be-strangers and compared our dual-wave success for the hours post meal, without stopping to marvel at the fact that we even had the option to dual-wave our insulin.

The future holds some great things for diabetes. But while we are anxious for the next pump or upgraded sensor, we need to be sure that we look back on where diabetes treatment has evolved from, and do what we can to help to those who aren't so lucky.

[Disclosure:  Okay, so this is Kerri, chiming in for Abby to cover this disclosure.  Abby's travel, lodging, and expenses were paid by Medtronic.  She attended this Forum as a representative of Six Until Me, and as a person with diabetes.  She did not receive any payment or product from Medtronic.  Her views and opinions are her own, and Medtronic did not ask her to write about the meeting.  Thus ends the italicized portion of this post.  Over and out.]

April 06, 2012

I Wanna Be a Medalist.

Last night was a thrashfest of grossly high blood sugars. I somehow cleanly disconnected my pump site while I was sleeping, having the high alarms from the Dexcom going off all night and then the low cartridge alarm going off this morning and ended up swapping out my pump early this morning after taking an injection ... blargh - it was a diabetes clustereff.  I woke up feeling mad at diabetes.

But then I remembered that even though one night is crap, there's still today. I can still do this.  And you can do this

I want to be a Joslin medalist.  (And in my head, when I say that, the words smush together:  "I wannabe a Joslin med'ist.")  And sometimes after a really crummy night with diabetes nonsense, I think of those people who have been living with type 1 diabetes for fifty or more years, and I'm inspired - again - to keep moving forward.

April 05, 2012

Totally Looks Like (Redux).

Hey Abby - this one's for you!

My sensor has been wonky for the last two days, and last night it completely quit on me.  But not before claiming I was 270 mg/dl (when I was actually 131 mg/dL). 

And not before also claiming to be a giraffe.

 

This is where I'd put in what a giraffe says, but they don't have a larynx.

Dexcom, you're like an etch-a-sketch sometimes.

April 04, 2012

Totally Looks Like ...

Sometimes my CGM graph totally looks like ...

Arby's Hat.  Yup.

... an Arby's hat.  

Holla at your Arby's hat.  Yo. 

(Arby's) hat tip to Totally Looks Like ...

Guest Post: Briley Gets Her Gala On.

Briley blogs at inDpendence, but today she's guest posting here about participating in Boston's Young Leadership Committee (which is truncated to YLC, but I keep reading it at "Your Lucky Cat."  So ... meow.)  There's a gala coming up, and as a New England local and a diehard Boston Red Sox fan, it's only right that I help her spread the word.

*   *   *

Ms. Briley

When I was in high school or early college, I used to volunteer for the JDRF Gala in New Hampshire.  When I moved to Boston, I thought it'd be fun to go or to volunteer.  I did my clickity-click thing on the computer and gauged my eyes out when I saw the price per person was somewhere around $400.  No problem - I'd just volunteer.  Except that filled up too quickly as well.  When May (and the gala) rolled around, I sat there thinking of heels and fancy dresses, while I presumably was in pajamas on the couch. 

This year I won't be thinking of those heels though; I'll be wearing them.  The Bay State JDRF has recognized that there is a whole contingent of society that has been left out.  This contingent is the same group that they are trying to reach out to lately: young adults with type 1 diabetes.  I have greatly benefited from this branching out because of group called YLC. It's a fundraising group with big events, walk teams and socials for support. If you're between the ages of 21-35, you should come join me.  The group is fantastic (and the people are even better). This year, there is going to be a  Gala After Party, and those of us from the YLC would LOVE to meet you!  The JDRF 30th Annual Hearts & Heroes Gala will take place just as it always has.  Towards the end of the night (at 9PM), the after party will start.  It will begin with socializing around the dessert bar & open bar for one hour.  The band will start at 10 in the ballroom, where the diehards from the gala will be.  A night of fun and socializing will continue until midnight.  

If you'd like to join us, you can find out all the information here.  Tickets are $65 before April 30 and $75 at the door.  If you want to talk to others who are going, join the event on Facebook!  I am excited to attend this event (the decision of what to wear has been taking up a lot of space in my brain), and I hope to see you there as well!  (And tell all of your friends to join you!)

*   *   *

If you're looking to get the word out about a diabetes advocacy event or meet-up, check out the events page at TuDiabetes.  There's plenty going on in our greater community; the more, the merrier!! 

April 03, 2012

Oh, High!

Sunday morning started off with promise - a fasting blood sugar of 99 mg/dL, a healthy breakfast of tea, a banana, and some scrambled eggs, and I remembered to grab my curling iron out of the fridge before meeting my ride to the airport.

I took an aggressive bolus for breakfast (because travel sometimes makes me  run a bit higher, for whatever reason), so I was surprised to see double-up arrows on my Dexcom graph while I was standing in the airport security line.  

"Hmmm … 172 and double ups … with three units of insulin on board."  The diabetes mental-math made sense to me. "I'm going to let this blood sugar ride out instead of rage blousing."

But by the time I was in my seat on the plane, I was at 312 mg/dL.  I do not know why.  I calculated breakfast.  I bolused well before I ate.  And I didn't feel stressed or nervous or whatever.  

But now I was high. And I felt high.  High, high, high.

It's a thick feeling in the base of your brain, like someone's cracked open your head and replaced your gray matter with sticky jam.  I find myself zoning out and staring at things, and my eyeballs feel dry and like they're tethered to my head by frayed ropes instead of optic nerves.  Everything is slow and heavy and whipped with heavy cream.

During the first hour of my flight from Austin to Baltimore, I tried to write but the words were stuck in my teeth.  I tried to read a book but I kept skimming the same sentences over and over again without really reading them. And I watched my blood sugar holding steady in the 300's, despite my boluses.

Rage-bolusing is a hard thing for me to avoid, especially once I'm so deep into a high blood sugar that I'd do just about anything for a bottle of water and a 120 mg/dL.  When I'm high, my back aches.  My eyes hurt.  My breath smells like the glue you use to assemble model airplanes.  My whole body is wrapped in cotton balls and I'm reduced to a lazy, lethargic lump in a seat, without a shred of energy and zero desire to smile.  I want to bang on the buttons of my pump, ringing through a billion units. I want to know why my breakfast bolus didn't make a dent, and why these subsequent "fix it" boluses aren't doing shit.  Is my infusion set crapped out?  Is my insulin vial spoiled?  Am I dehydrated?  Did I miscalculate my breakfast bolus?  Did one of the fifteen thousand diabetes variables go rogue on me?

I didn't want to swap out my infusion set in the bathroom on the plane and then have to wait, wait, impatiently wait to see if another bolus will hit my bloodstream.  I tested my blood sugar again and saw that I was up to 360 mg/dL, and the Dexcom graph didn't show any promise of a drop anytime soon.

Which is how I ended up busting out my insulin pen on the flight, about two hours into my flight, sneaking in a quick injection into my belly while the girl next to me read her biology textbook.  (She didn't notice.  Even after all these years on a pump, I can still manage to inject discreetly.)

The plane was up high ... and so was my blood sugar.  It's almost too literal; I can't take it.

By the time I was on my connection flight, I had settled back into range. Was it the string of small boluses, finally catching up with me?  Can I thank the injection?  Either way, the molasses in my veins had been replaced, once more, by blood.  Game over for diabetes chaos.

And looking at my Dexcom graph, I realize that diabetes gives a whole new meaning to "mile high club."

:: rimshot ::

April 01, 2012

So Much Bigger.

Coffee and diabetes go together like ... puzzle pieces.  Or other kinds of things that go together.I took two packets of sugar substitute from the basket near the coffee maker and flicked my wrist to loosen up the granules, then ripped open the paper packets and poured them into my coffee cup.

"What kind of insulin pump is that?  My grandson has an insulin pump."

His voice was warm and kind, and he stirred his own coffee absently, looking curiously at the pump in my pocket.

"An Animas Ping."  I smiled at him.  "How long has your grandson had diabetes?"

"A little over a year.  I like your pump.  It looks small.  What kind is it, again?"

"Animas.  What does your son have?"

"Medtronic."  He looked at my pump again.  "It just looks so much bigger than that one."  

"I think most of the tubed pumps are generally the same size, give or take.  Mine is about the same size as your grandson's.  How is he doing with it?"

The grandfather smiled.  "He does great.  He's a good kid.  He was on the pump soon after being diagnosed.  His grandmother and I are here at this conference to learn all we can and report back, since his parents couldn't come because they're home with him."  

He paused.  "Are you sure your pump isn't smaller?  It looks a lot smaller."

"I'm almost positive."  

We both sipped our coffees.

"How old is your grandson, sir?"

The smile on his face flew like a bird from his mouth to his eyes, though it was a bit sadder when it landed there.

"He's two.  Two and a half."

My insulin pump was the size of a whisper, sitting on the hip of a grown woman, compared to being clipped to the pajamas of a two and a half year old boy.

My eyes filled with tears that I ignored as I sipped my coffee as a distraction.  "The pumps are the same size.  It's the size of the person wearing it that varies, I think."

"That must be it," he said.  "But still.  Everything just looks so big on him."

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