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July 29, 2011

SUM Search Terms: The One About Baby Ninja Beans.

Search terms for diabetes blogs aren't always what you'd expectThe search terms that bring people to my blog continue to amaze me in their diversity and weirdness.  So much that I wanted to give a quick recap of the strange searches bringing people to SUM this week:

Does Muro 128 affect your sense of smell? - Wow.  Muro 128 is my favorite old lady drug of choice these days, thanks to the cornea chaos.  But no, it hasn't affected my sense of smell.  It has, however, affected my ability to look sexy in the morning.  In that one eye looks shiny and weird.  Better than swollen and ripped to shreds, though. 

clara barton camp PICTURES OF THE DANCES - OMG ALL CAPS I KNOW!!  When I was a camper at Clara Barton, the dances with the Joslin Camp were among the highlights of the sessions, because where else in your early teens could you sneak a smooch with a BOY without your MOM spying on you?  ALL CAPS?

onetouch ping actual size - Actual size?  It's the size of an insulin pump.  ;)

store insulin pump in bra - Sounds like someone searching for disco boobs to me ...

thank you greeting warm hospitality kittens
- I have no idea what this person was searching for, but in my mind, it's adorable.  Hospitality kittens sound like they'd always have cinnamon buns at the ready, and they'd have a nice, sunny spot near the window prepared for you to take a nap.  Ahh ... hospitality kittens.
things a diabetic dreams of - Ice cream?  Bacon?  Cupcakes?  Giving a presentation at school and realizing you're only in your underwear?  Insulin pumps with integrated CGM components (hello, Vibe)?  A cure? 

baby ninja bean - Cutest.  Search term.  Ever.  And if someone has a visual representation of what a baby ninja bean would look like, I'd love, love to see it.

six until mine - Whoops - sounds like someone has mixed Amy and I up?

crazy chicken - I Googled this one myself to see just how someone stumbled onto a diabetes blog through this search term.  And first, I found this video (thoroughly entertaining).  But then, a few pages in, I found this post from Abby about her dia-ink, which flagged the search due to the close proximity of the word "chicken" and "crazy." 

damn lol invisible bike - The ultimate I Can Haz A Cheeseburger moment!  Invisible Bike is a personal favorite of mine.  But clearly this searcher isn't as enamored, as they're flagging it with "damn."

diabetes who can't cook - And there it is.  A fellow culinary challenged PWD, searching for me.  I can't cook.  Not even a little bit.  The only thing I can do is bake, and that's an ironic skill set for a person who doesn't produce their own insulin.  

And now I can't stop thinking about baby ninja beans and hospitality kittens.  Mental cute overload.   :)

July 28, 2011

Three Blind Mice.

My godfather is known for his ability to find the quirkiest, most remarkable little gifts, and now that I have a daughter of my own, that tradition is extended to her.  For my baby shower, he gave me a "three blind mice" puppet to entertain BSparl with.

It seems simple at first - just a red box with a removable lid:

Three blind mice.  Three blind mice.  They're in this box.  They're in this box.

But inside lives these three blind mice (finger puppets), and you can make them dance by putting your hand in the secret glove.  BSparl loves this puppet.  She toddles over to me with it in tow, and claps and laughs when I make the mice jump out of the lid:

They all went after the farmer's wife!  Who must have done something to deserve that strife!

But clearly I need to wash my hands after testing my blood sugar before I play with this toy, because I managed to wipe a little DNA on the liner inside of the puppet:

Did you ever see such a sight in your life as three blind (DNA-stained) mice?

Diabetes, you have a way of working yourself into the strangest little places. 

July 27, 2011

Overheard: The Mothership.

My alien transmitter, which speaks directly to the mothership.  Clearly."Mom, that lady has special powers and is an alien.  I know because I saw her alien transmitter in her pocket and it has wires and it talks directly to her body using that tube.  I saw it.  She can't hide from me because I saw it and it looked that's how she communicates with the mothership but she's safe and she didn't seem scared, right?"

It's at that point that I felt the need to explain to the eight year old boy's mother that it was an insulin pump.

July 26, 2011

CWD: Pregnancy and Diabetes.

When Jeff Hitchcock approached me last year and asked if I would feel comfortable leading the Pregnancy and Diabetes session at Friends for Life, I was honored.  But also a little confused.  What on earth was I going to tell the session attendees?  I couldn't spout off medical information.  I am not a licensed medical professional.

"I'm just a person with diabetes who had a baby.  And my pregnancy was a bit of a tangled one, too!"  I remember emailing to Jeff, wondering if they'd be better off with a doctor at the helm of that discussion.

He replied within minutes, telling me that was exactly why they wanted me to lead the session.  And I grinned, but felt nervous.

Before the little bird joined our family, I did a lot of research about pregnancy with diabetes.  Hard facts, statistics, and professional recommendations were available by the fistful.  The problem was finding anecdotal information about managing pregnancy and diabetes at the same time.  Before Chris and I left for Spain that year, knowing we were ready to try for a baby, I felt prepared.  But when we came home and found out I was pregnant, I wanted nothing more than to find a room full of other pregnant women who had diabetes, so I could immerse myself in their support and say, "I have NO CLUE what I'm doing!! HELP!!"

Thing is, most pregnancy discussions don't take that kind of personal turn.  I've attended a few other pregnancy sessions in the past (as a participant, not a discussion leader), and I remember leaving with panic in my stomach and a lack of eyelids because I was so bugged out about the information that was presented.  Pregnancy isn't easy, even if you take diabetes out of the equation, so being pelted with gobs of information on "what to expect" can be completely overwhelming.  For me, it made me scared to try, and unsure if I could actually do it successfully.  One session I attended in the past had the speakers throwing out fact after fact about how arduous and chaotic pregnancy is, and then turned to the side, rolled their eyes, and said, "But it's so worth it."

Really?  Is it?  SHOW ME!  Make this accessible!  Help me feel less afraid! 

Looking forward and feeling happy is a good thing.  See?
An example of looking forward, feeling happy, and rockin' yet another hair bow.

During the pregnancy session at the Friends for Life conference earlier this month, we only had a few people participating in the discussion.  I think there were about twelve of us, all women, and we sat in a circle and introduced ourselves.  There were many of my peers in attendance (women with diabetes of child-bearing age), and there were also some moms of little girls with diabetes who wanted to talk about their daughter's future.  I was determined to make the discussion something that made people feel inspired and hopeful.

We talked about pre-pregnancy planning, and the importance of getting your A1C down to a stable level predetermined by you and your medical team.  "Planning ahead is like the most important thing I could ever recommend.  Not that you can plan ahead, every time, but if you're able to, it's crucial."  We talked about "big babies" (not all babies of women with diabetes are "big", and not all "big babies" are the result of uncontrolled diabetes) and the impact of breastfeeding on diabetes management.  (And I found out that I wasn't the only person who liked the idea of hiding fruit roll ups in the couch cushions.) 

Of course, THAT movie came up:  Ye Olde Steele Magnolia(e)s.  Or, as I called it, "Metal Flowers," because it seems like everyone who mentions that movie feels depressed.  I personally love that movie; I just don't care for the taste it leaves in my mouth about diabetes and pregnancy.  "Love it or hate it, it's one of the few mainstream media representations of what a diabetic pregnancy looks like.  Which is why I'm glad we're all here, sharing our stories, because we have the power to change that perception."    

I hope the discussion went well, included moments where people felt safe to ask what they were really thinking about, and that the answers made them feel empowered.  It wasn't a medical session.  It wasn't about a doctor telling patients how to best manage their pregnancies.  It was just a few women, sharing the common bond of type 1, sharing their real stories and drawing strength from one another.

That, to me, is the power of this community.

July 25, 2011

Crazy Train.

Oh hi! Are you reading the alt text?The past few days have been unreasonably hot in the northeast, making me wonder if that whole "fry an egg on the sidewalk" thing could have been a real breakfast option.  I visited the Animas HQ last Thursday and Friday, and when I left their offices late on Friday afternoon and headed to the train station at 30th Street in Philadelphia, the heat was relentless.  And apparently, the train station didn't get the note about air conditioning being a great idea.

"Acela 2172 to Boston delayed by 50 minutes" greeted me upon walking in the door.  Awesome.  

I milled around the train station for a while, sucking down an iced coffee and changing from my dress and heels into shorts and a t-shirt.  (Thankfully - more on that good decision later.)  The train was delayed again, this time to 75 minutes.  Many of the other trains on the board were marked as "Cancelled."  

I called Chris.  

"I'm not positive I'm going to get out of Philly.  The trains going north are all delayed or cancelled.  I'll let you know."

"Okay, be careful."

The Acela 2172 did end up boarding, so I jumped on with my fellow passengers, thankful to be in the air conditioned, comfortable seats on the train.  However, right after we started going, the conductor came over the loudspeaker:  "This train will TERMINATE in New York's Penn Station.  There is no further assistance offered by Amtrak.  All passengers must exit the train."

TERMINATE?  Spoken in all caps?  That can't be good.

I've never seen such a large group of people mobilize so quickly.  Within seconds, everyone was on their phone trying to secure a rental car, or a hotel room, or a helicopter.  (Okay, so one guy on this train had some serious money, because he was actually talking to someone about getting his helipad ready for take off.)  Me?  I called a friend, my mother, and then my husband, mainly just to confirm that I was indeed stuck on a train, and it sucked.

The short of it is this:  An accident in New Haven, coupled with wires down due to the excessive heat, shut down all of the northbound train service on Amtrak.  It also completely mucked with the Metro North trains headed north, as well.  This left a bunch of northbound passengers high and dry (actually, low and sweaty, if you're me), and streaming out into the streets outside of Penn Station. 

Part of living with diabetes is hoping for the best scenario, but planning for the worst.  I thanked whatever part of my brain had thought about buying a few bottles of water before leaving Penn Station.  I also thanked that same part for remembering to throw a pen of Humalog into my purse before traveling.  And then I thanked my subconscious for making me change out of my heels before I slogged it through New York City.

Because what unfolded next was a perfect storm of personal diabetes chaos:  While walking from Penn Station to Grand Central in efforts to grab one of the only running Metro North trains, my blood sugar plummeted into the 50's.  I cracked open a bottle of juice I had snagged from the Animas office, and drained half of it while walking with my new friends (aka my fellow 2172 passengers).  Between the heat, trotting along with my luggage, and the low blood sugar, I was drenched with sweat by the time I reached Grand Central.  Dehydrated, exhausted, and watching the now double-up arrows on my Dexcom, I stood in Grand Central and watched the Hudson line board, waiting for the departure track to be announced.  The train finally arrived and the collective throng of people waiting in the terminal moved towards the track.  The heat, again, was incredible.  The Dexcom started to BEEEEEEP! and wail.  And I realized I hadn't used the bathroom since leaving Philly, which meant that my body was sorely lacking in the hydration department.  

As I rode the slowest train EVER from Grand Central up to Stamford, I watched as my blood sugar rose and rose and rose.  Within a 45 minute span, I climbed over 280 points, eventually hitting 380 mg/dl.  The stress of the cancelled train, hoofing it to Grand Central, the low blood sugar, the rebound high, and the dehydration was sending me straight into  a dangerous situation.  I was drinking water, but the nausea was overwhelming, and I spent the entire ride trying not to throw up.  I've never experienced diabetic ketoacidosis before, but I knew that if vomiting started with a blood sugar that high and hydration levels that low, I was in for some trouble. 

I called Chris, who was on his way into New Haven to pick me up.  "Dude, I feel horrible.  My blood sugars are wicked high, and I feel really nauseous.  We may need to stop at the ER, depending on how this goes."

"When are you supposed to get to New Haven?"

"We have to change trains in Stamford to a diesel engine, because the wires are down in Westport and everything sucks.  Looks like I'll get to New Haven close to one am."

Thankfully, by the time we reached New Haven, my blood sugar was down to 117 mg/dl and the nausea had passed.  But not without issue.  Hours and hours passed, and the train crawled from stop to stop, the doors of the car opening and the hot air rushing in.  People were irritable and exhausted, myself included.  I had left West Chester, PA around 3:45 pm, but didn't smash my face against my pillow at home in Rhode Island until 2:30 am. 

  • Test strips used during my travels:  11. 
  • Bottles of water consumed:  4. 
  • Average temperature while traveling:  103 degrees.
  • Number of bouquets of flowers that Amtrak should send to my house as an apology:  2.
  • Glucose tabs consumed:  8. 
  • Humalog pen injections taken:  1. 
  • Number of hours it took to get from West Chester to RI:  11.
  • Number of times I texted and used the phrase "effing train":  14.  

Being home, safe and in the air conditioning?  Priceless.

July 21, 2011

Guest Post: Nor Shall My Pump Sleep In My Pocket

I'm traveling again today, but thanks to the musings of my type 1 friend across the pond, there's something popping up here on SUM today.  Actually, I love this guest post, because Tom Hrebren gives a Brit's-eye-view of the American health care system, and it surprised me a little bit.  And he opens with a little William Blake ...
*   *   *
Tom of Brighton.  Not Maine.These feet (ulcer free) walk upon England’s mountains green. Albeit in not so ancient times but the present times and unlike those mentioned in that hymn which is an anthem to public schoolboys such as I; they still carry me from A to B unlike the feet of Mr William Blake who now spins in his grave thanks to me hijacking his hymn.

Kerri has graciously invited me to do a little waffling here thanks to a few choice comments of mine on a link she posted on Facebook in relation to her post “Need vs. Want”. She doesn’t know what she’s let herself in for. (Cue evil laughter.)

I’m here to give an Englishman’s, therefore an NHS patient’s, views on the care received by Americans.

Where to begin? Well, I suppose that I had best start with the quality of care. Here in the UK, where you live very much influences the standard of care that you receive from the nearest hospital to you. it’s called “The Postcode Lottery.” I myself have been a victim of it. My paediatric care was shocking. However, I am still under the same adult team at the same hospital yet my care is now fantastic. There are five DSNs (diabetes specialist nurse) for all the adult patients and two consultants. The two consultants have both cared for me and have been wonderful. The nurses are damn good, too. Compare this to the paediatric service: At the moment there is one dire consultant under whose care I was once under. There is one paediatric DSN who has to split her time between that hospital and its sister hospital. She is also abominable.

In America, where you live seems to have little or no bearing upon the standard of care you receive as you can pretty much pick and choose who you see. If you want to do that in the UK, you have to get a referral to the team which you want to see. This is now much easier under Patient Choice than it used to be. Many parents of kids with diabetes that I know are referred (not without struggle) to Professor Hindmarsh and his team at University College Hospital, London, or other centres of excellence such as Leeds. This is because the care in their local area is dire and totally unsatisfactory.

Technology is my next one. Many more type 1s in America are insulin pumpers than there are in the UK. This is because it seems to much easier in America for a consultant to get the insurance companies to hand over the cash for pumps and CGMs. Here in the UK it is vastly different. Pumpers such as I are fewer in number. Many have to fight tooth, claw, and nail to get them. This is for many reasons; number one amongst those is the interpretation of the NICE (National Institute of Clinical Excellence) guidelines on insulin pumping. In essence, if a consultant states that you are suitable for a pump and would benefit from it then by law the PCT (Primary Care Trust, an organisational unit of the NHS, soon to be abolished) has to pay for one. It’s all nice in theory, however in reality it is much harder as PCTs have been known to put pressure on consultants as they don’t like paying for them due to the costs of the initial outlay and maintenance of a pump. That’s the second reason. Thirdly, consultants can be positively anti-pump and their interpretations of the NICE guidelines can be horrible.

Money, something that everyone understands easily. As an NHS patient I pay nothing towards my care directly. It is all paid for in my taxes. Americans are obliged to pay for private health insurance. Here some people choose to go private as they can afford to do so. Americans are obliged to. Sometimes the accountants seem to know what’s best for you, at least it feels like that. My major bone of contention is test strips for my BG meter. I get three hundred per prescription. This was upped last year from two hundred and fifty. When I suggested that to my GP (general pillock, whoops, practitioner I mean) she mentioned money and it being very expensive. Almost as if I was asking her to pay for my treatment herself. She gave in at the end. Had she put up more of a fight I would have asked for her to compare the cost of having me blue lighted to A&E by ambulance owing to DKA or an unnoticed hypo because I had run out of strips and the admission A&E, possibly HDU and ward after A&E. That usually gets the buggers. However, I will happily admit that the care I receive at the moment is the best that I have ever had.

That said, ultimately you get what you pay for. If an American can’t afford a good insurance deal then they ultimately get substandard care which never fails to shock each time I hear a horror story about health care in America. What is nice to know is if I ever need to roll into A&E I will never be asked to provide my insurance documents. I have been told hair raising stories by former colleagues who have holidayed in America and been forced to fall onto the hospitals there.

How am I to end this before I drop into the “I’m going to rant all night” mode? It’s a sad note for me to end on but from what I understand and what I have learned of American health care over the years it is more of a profit generating industry. It seems to revolve more around the money than the patient than the NHS does. I fully understand that the NHS has its own financial issues, however, they are in different areas and sometimes less prominent. I’m glad that I pay for my health care through my taxes as then the government is the only person shafting me. To my mind the government is more accountable than a health insurance company and less likely to try rob you blind. I would hate to have to fight against a commercial giant. I just have to fight against a government, the playing field is more level and I find that I can use more back doors than I suppose I would if I were tussling with a private company. It’s pitiable, at least in my eyes, that something which is so vital to every person on the planet seems to be so greatly orientated by money.

I’ve not covered everything as if I had, you’d be here well into the next century. Please don’t get me starting on overhauling the NHS as I have been known to go a bit mad at times …    
*   *   *
Tom offered up his own bio, which I loved, and didn't want to change a word of it because something about "I start scaring people in September" sounds awesome.  Note:  He doesn't link to a blog, his Twitter account, or anything else social-media-y.  He's a true trailblazer.  :)

Tom's Bio:  What is there to say? My name’s Tom. I was diagnosed in August of 1996 (records have it as the tenth of that month). I’ve been pumping a year. Currently living in Brighton but soon to move to Oxford to become a student nurse, I start scaring people in September. I haven’t quite got a favourite tea, more a favourite beverage quite local to me – Harvey’s Sussex Bitter but I take my tea white with four sugars (twenty grams of carbohydrate). I apologise for the photo. It’s from my leaver’s ball at college and set the standard of photos of me for the next two years. I’m drunk.

July 20, 2011

Fifteen.

To my daughter,

YOU CAN WALK!!! And it's about time, my love.  Because even though I know it's totally fine that you didn't truly walk until you were fourteen months old and you didn't regard it as your preferred method of transportation until like two weeks ago, I was still a little concerned.  It seemed like everyone was running all over the place, and you were content to crawl.  Was it because you're my first and I love your face and I pick you up and snuggle you at every available opportunity?

Mowing the lawn has never looked happier.

Either way - HA!  You showed me.  You started taking your tentative first steps a while ago, but now you literally run amuck.  Your fat little legs can move you from one side of the back deck to the other in record time.  You do laps around the patio table.  You want to climb the stairs and chase the kitties and push your toy lawnmower and you definitely want to point your fingers in the air while you walk and yell "YAY!!!!"  (The fingers-in-the-air thing makes me laugh out loud, because you look like a high speed disco queen.)  And while I may regret saying this, I'm so glad you're walking.  Mainly because it shows that you're growing up, but also because you look so silly standing up and toddling around because you are so damn twerpy.

You have changed so much in the last few weeks that it's starting to make me nervous.  (I checked your back for a "pause" button, but haven't found it yet.)  It's cool though because we can actually PLAY.  Last week, we swapped out your little baby car seat for the Big Girl car seat, and conveniently, the box transformed swiftly and easily into a spaceship.  You crawled right inside the thing and tolerated my silliness while we pretended to travel through space, with Space Siah right outside of the ship's window.

Flying our cardboard spaceship through space, time, and cats.

Your vocabulary is coming along, but in entertaining patches.  We're way past "kitty" now, and have moved on swiftly to "cow," "duck," and "snack."  (These words are not necessarily related.)  Your babbling is taking on a very conversational tone, and when you "read" your books out loud to me, it almost sounds correct.  When I ask you what the cow says, you reply confidently with "moooo ... oon?"  A piggy says "nuff nuff" and sometimes also "piggy."  Bunnies say "rabbit, rabbit."  Actually, many animals say their own names in our house, which may lead to some confusion in the future.  But for now, it is fun to watch you giggle when I pound my chest and yell "Go-rill-a!!"

However, what makes me laugh the most is what I hear in your babbling.  Oftentimes, you just toddle around mumbling "Dumbledore," which makes me wonder how much Harry Potter I read while pregnant.  "Chris, I swear she is saying 'Dumbledore.'"  And your daddy laughed at me, until we were in the car last night and he heard you from the backseat musing quietly about "Dumbledore, Dumbledore."  I rest my case.

And that hair.  Oh Birdy, I know that your auntie has curly hair and that your great-Grammie had curly hair, but seriously, yours is out of control.  In the morning, when your mom and dad rescue you from your crib, your hair makes you look six inches taller than you actually are.  Daddy calls you "tornado head," and he's totally right.  It doesn't help that you are fast becoming Linus with your blanket, dragging that knitted, cotton lovey around with you and occasionally rubbing your face into it, thus teasing your brown curls into complete chaos.  Kid, I wish my hair had that kind of volume.   

To me, you are the prettiest little brown-eyed girl I've ever seen.  But clearly, you look nothing like me.  I am okay with this, because you look just like your adorable daddy.  Just not like me.  And this was confirmed by the woman at the grocery store a few weeks ago who asked me if I did domestic adoption.  "No, she's my biological daughter."  Awkward pause.  "But ... thank you?"  (What do you say to that?)  Regardless of who you look like or where you came from, I think you're awesome.

Fifteen months already.  Damn girl, you need to slow down and let me catch up with all this change.  You are leaving the baby version of yourself behind and are turning into my little girl right before my eyes. 

Faster than you can babble "Dumbledore."

Love,
Mommy

July 19, 2011

CWD: Parenting With Type 1 Diabetes.

Lead by Korey Hood and Stefan Rubin, the Parenting with Type 1 Diabetes session at Friends for Life was aiming to touch upon the different challenges of being a parent with type 1 diabetes, instead of the concentration on parenting a child with type 1 diabetes that Children With Diabetes was once known for.  This was my first year attending this session, and I sat between two of my best friends in the diabetes community - Scott and George.

"So thanks for coming, you guys.  We're here to talk about parenting with type 1 diabetes," said Korey.

At this point, people started doing introductions.  "Hi, I'm So-and-So and I was diagnosed with diabetes in 1998."  or "I've been diabetic for 16 years and I have three children."  Only introductions.  That's it. 

So why was I already crying?

I didn't expect to feel the way I did during this session.  Instantly, I was completely overcome with emotion.  And not in a quiet, just-a-few-tears-escaping sort of way.  Instead, I was a blubbering mess, sniffling and snarfing and wiping my nose on my sleeve.  It was this intense rush of emotions that I didn't even know I had ever thought about, never mind felt overcome by.  

The group talked about their diagnosis, and their decision to have children.  They talked about what it's like to have a low blood sugar affect plans to go camping.  They talked about how their children react to diabetes, and what inspires them to keep plugging ahead on their daily management.

One woman caused me to have to leave my seat and grab a box of tissue to keep for my very own from the back of the room.  "I was the only person with type 1 diabetes that I knew ... until my son was diagnosed."

I couldn't contribute.  I could barely catch my breath.  And it was embarrassing.  My daughter is only 15 months old.  She doesn't know much about my diabetes, save for the fact that I have my own personal remote controls that she wants to press all the buttons on.  She doesn't understand why I sometimes don't share my snacks.  Or why I can't pick her up every time she wants me to.  She doesn't understand now, but eventually she will.What you so worried about, Mama?

And I think that's what grabbed me and held me.  Before BSparl was born, I planned for her.  I planned and worked to become the healthiest I could be, and I loved her long before I carried her inside of me.  And then she was born, and the focus became adjusting to life as her mommy and as part of a family of three instead of two.  It wasn't until recently that I felt comfortable as a mom - used to it - and my heart finally allowed me to feel something other than the newness of motherhood.

I wanted to introduce myself to the group.  I wanted to tell them that I, too, was a veteran of type 1 but not so much of an experienced mom.  I wanted to ask them how they made sure their kids weren't overwhelmed by their diabetes.  And the question I wanted answered more than anything kept catching in my throat:  How do I explain this to my daughter?  But I couldn't ask.  I just sat there and listened.  And cried like a baby.  And thought about the fat little Birdy who was waiting for me at home in Rhode Island, flapping her little wings and getting ready to fly.

I love my family, extended and otherwise.

After the session was over, we spilled out into the hallway.  George caught me up in a hug and I just let let it all go.  The fear and that heavy feeling of "forever," coupled with a love for my daughter that I didn't truly understand until I thought about diabetes taking me from her.  I knew he understood.  I knew that Scott understood, too.  And so did everyone else who has raised a family while taking care of their own diabetes.  These friends of mine were parents with type 1, with children who were much more grown up than my little bird.  I knew that if they could do this, I could, too.  And having met both George's and Scott's beautiful and loving families, it gave me hope that my own little girl would grow up to love me just as much as I love her.

This session was the most emotional I have ever been in public, but it felt okay.  Safe.  The only casualty was George's shirt, which ended up with a smudge of mascara.  And perhaps some tears.  Or snot.  (Sorry, G.)

I saw Korey in the hotel later on, and apologized to him for being an emotional wreck in his session.  

"It's okay.  I totally understand."  But as soon as he started to talk, I started crying again.

"I'm sorry, Korey!  I think you're like a trigger for me.  I'll just email you."

This session was intimate.  And it hit a nerve on me that I didn't even know was there.  But I felt better afterwards, like I had experienced a therapeutic breakthrough, somehow bringing me even closer to both my family by blood and my family by blood sugar.

Thank you, George and Scott, for being the kinds of parents I hope to become.

July 18, 2011

The One About the Dead Pump.

A little pump vacation, anyone?In my almost eight years of pumping insulin, my beloved pumps have died twice.  The first time was the night my diabetes turned 21 years old (clearly, it was out on a bender) and the second time was last weekend.  On a Saturday afternoon.  On Fourth of July weekend.

You know, when EVERYTHING is closed?

What happened is this:  I was getting dressed in the bathroom and was tucking the pump into the front of my bra for a little disco boobs action.  Only my hands went all fumbles on me, and the pump leapt out of my hand like the escargot Julia Roberts attempts to wrangle in Pretty Woman.  Little Ping hit the floor with a perfect BANG after the five foot, four inch fall, and the pump started to spazz.

"BEEEEEEEEP!!!"  Vibrating madly.  "BEEEEEEEEEEEP!"

I've dropped pumps in the past - plenty of times - but somehow, this fall was precise in its destructive powers.  I disconnected the infusion set in a hurry, not sure if a spazzy pump would try and empty out its reservoir.  The pump was beeping, and an error message was lit up on the screen.  I didn't see it for more than a few seconds, but it was something close to:

"Your pump is having a major malfunction.  Error number OU812.  Call Animas Customer Service immediately.  Even though it's a Sunday.  Srsly." 

It's Sunday.  On a Monday-holiday weekend.  Chris and BSparl and I are about to head out to a Fourth of July picnic with family and friends.  We're literally like 20 minutes away from walking out of the house, and this is when my pump opts out? (Read:  Or when I throw it against the bathroom floor in just the right way so that it dies instantly?)

I popped a new battery into the pump, but the screen didn't light back up.  With the battery in, the pump just made sad little beeping noises, similar to the ones Siah makes when I accidentally shut her in the walk-in closet.  ("Mew!")  I knew my precious pump was reduced to froast. So I rang up the Animas customer service line.

Nothing annoys me more than having to "press one if you're having a technical problem ... press two if you are having a bad day ... press three if you'd like to remain on hold for 23 minutes to speak with a representative."  If I'm dealing with a broken medical device, I'd rather speak with someONE when I dial in to customer service, not someTHING. 

Thankfully, with both Minimed and Animas, I've never had trouble with customer service.  I know people have different experiences left and right, but with both companies, I've had my problems resolved fast.  (And I appreciate that.)  However, this was my first time needing an Animas replacement (since switching to the Ping back in January 2010), so I didn't know what to expect.

Within 20 minutes of me sending my pump to its death, I was on the phone with the Animas "emergency service holiday weekend rep" (my term, not their official one), discussing where the replacement pump needed to be mailed. Actually, I left a message for her with the holiday answering service, and she called me back while I was on the phone with a friend who works for Animas (we were trying to figure out how to get a local rep to score me a rogue pump for the weekend). 

"Ooh, that's the customer service line!  Hang on; can you hang on just like a sec?"  I said into my house phone, reaching for my ringing cell phone.  It was like diabetes overload, as I foraged through the fridge for my emergency bottle of Levemir while on two different phones with two different Animas people, and a dead pump corpsing up on the kitchen counter.

"I'm leaving for a conference in Orlando on Tuesday morning, so would it be possible for the pump to be shipped to my hotel?"  It was Sunday.  I was leaving for Friends for Life on Tuesday morning, the pump was due to arrive on Wednesday, and I refused to go a week on MDI to reconnect upon my return to Rhode Island. 

"Not a problem.  It will arrive there, before 10 am, on Wednesday morning," said my Animas customer service weekend angel o' happies. 

"Great, thank you so much!!  I really appreciate all of your help."

"No problem.  If you need anything else, call me.  And enjoy your weekend!"

After unearthing my stash of syringes (kept in a shoebox downstairs in the basement, which meant I had to brave some potentially massive and murderous spiders in efforts to shoot up) and uncapping the back-up bottle of Levemir I had picked up from the pharmacy THAT DAY (talk about ironic timing ... more on that and the impromptu return to MDI later), I was ready for a few days of injections while I waited for my pump.

"Are you sure you're okay to go the party?"  Chris asked.

"Yeah.  Oh wait, hang on a second."  I ran upstairs and changed from my skirt and top to a light, pretty summer dress. 

"You changed your clothes?"

"Dude, I'm not going to waste this pump vacation.  All sun dresses, all the time."

[Animas Disclosure]

July 15, 2011

The Friday Six: Information Overload.

The Friday Six:  July 15, 2011 editionFor once, I'm not at a loss for things to write about.  The problem is more finding the time to let the words out!  But there are a few links/ideas I wanted to share, so here's a Friday Six aiming to alleviate the pressure in my head.  ;)

1.  The latest issue of diaTribe is out, and with it is a SUM Musings column I wrote back in December (but had been put on hold for this cure-focused issue).  "What is a cure for diabetes?  Is there room for variances in that definition?"  I think that perspective varies like basal rates.  Check out the column and see what you think.

2.  The Australian Diabetes Council has some videos about life with type 1 (and a few on type 2).  I received an email from their media outreach team, and while I don't post everything that's sent to me, this one with Sebastian made me smile.  I want to hug the kid, and his dad, for two entirely different reasons.  

3.  There have been a lot of posts about the Friends for Life conference last week, but this one from Scott Strange broke my heart and made me smile, all at once.  Thank you, Scott, for this poignant piece.  

4.  dLife is playing host to a new Generation D column, and this one has a big shout out to Victoria Cumbow and her work to help the PWDs in Alabama who have been affected by the tornadoes.  Click through to The Outpouring and see how the diabetes community isn't just blog posts and Twitter ... we're helping one another in real life.

5.  Hannah at Dorkabetic has always been one of my favorite d-bloggers, because she's smart, creative, and she doesn't pretend to have it all figured out.  Hannah's diabetes recently "turned 21," and she had a tough endo appointment to mark the occasion.  Throw a little love Hannah's way, if you can, and raise a cup of your favorite liquid in her honor!  (I'll be raising iced coffee.  BSparl may be raising a pot of invisible tea.)

6.  And lastly, as I've watched the shrubbery in the backyard quiver while my idiot cats do battle in there, tearing through the yard and running after one another (and mostly Siah dive-bomb attacking Abby the Cat, with poor Abby just sitting there, paralyzed by fear and fat), I need to remind myself that they did once like one another.  These foolish animals were once buddies. 

They used to like one another.  Or at least slept on the same rocking chair.

Although you'll note that Abby has one eye opened.  Smart cat. 

July 14, 2011

Denise Jonas Talks About Diabetes Support.

OMG Nick Jonas's mom!  The lovely and gracious Denise Jonas.Denise Jonas is the mother of a kid with diabetes, only her kid with diabetes happens to be Nick Jonas (known in the teen circles as "OMG Nick Jonas," first name "OMG").  Denise recently stepped in as celebrity spokesmom for the Disney Online and Lilly Diabetes collaboration I (and lots of others) blogged about this morning, and she was able to take a few minutes out of her whirlwind media schedule for the Once Upon a Time Contest to chat with me on the phone.  Gracious, kind, and definitely not in denial about the challenges of life with type 1 diabetes, Denise is as sweet as she seems.  Pun sort of intended, I guess.  ;)

KERRI:  Thanks for taking the time to speak with me, Denise!  When I was diagnosed with diabetes, support was only within my zip code.  Things are, thankfully, different now.  When your son Nick was diagnosed at age 13, where did you turn for support in those first few weeks?

DENISE:  At first, most of our support came from the hospital.  The medical staff that surrounded us in New Jersey were tremendous.  We had three days of training, and educated us about everything, even about our emotional health.  Everyone around Nick was trained to check him and administer his insulin.  Early on, I consulted mostly with her nurse for information.  But my sons are from the younger generation, and my other two sons immediately went online and found out as much information as they could.  They were scouring for information.

For Nick, he just wanted to know who else had diabetes.  "Who are other celebrities who have type 1 diabetes - give me a list," he asked after his diagnosis.  Only I didn't know of any.  We knew about a lot of athletes, but not many other public figures.

KERRI:  As the mom of a person with diabetes, the worry doesn't stop even though your son is now managing his own care.  How did you let go a little and help him take the reins on the control of his diabetes?

DENISE:  I have to say, if you know Nick, this is the person he's always been.  He's an old soul.  He's always taken the reins with his life.  We all, as parents, have to learn how to let go.  It's hard.  Diabetes affects those who can handle it.  I've always said that about my son - he can handle this.

KERRI:  I know that my mother and I battled incessantly about two things growing up:  boys … and diabetes. How do you maintain a good relationship with Nick when it comes to his diabetes management, and what advice would you have for other parents or caregiver?

DENISE:  It's hard to parent.  You always have to remain a parent and not try to be something different.  You're always the parent.  But don't be afraid to be concerned and care and to inspire.  Try not to let anything limit [your child].  Which is why I believe in this partnership.  The inspiration that is being offered is amazing.  That's why I believe in this. 

KERRI:  Which is the perfect segue to my next question.  Even though both your son and I are now "grown ups" (technically) with diabetes, it's still nice to have fun and relatable role models.  How do you feel about the addition of type 1 diabetes to Coco's character?  What was Nick's reaction? 


DENISE:  Nick is always in support of an influence encouraging awareness of type 1 diabetes.  We meet lots of families with younger children who want someone to identify with.  I've had several parents tell me [laughs] that their kids have dressed up for Halloween as Nick. 

KERRI:  That is what makes Coco and Nick so inspiring.  Not that Nick is a cartoon character, but he and Coco have made having diabetes cool, you know?  Something that kids think is cool.

DENISE:  That's exactly it.  I believe so whole-heartedly that this is the most exciting thing I've seen in a long time.  The education [for families of the newly diagnosed] is limited to a certain extent.  Medical information is absolutely important, but day-to-day encouragement of how to live with this every day and deal with emotions and find the magic in things is needed, too.  This is why I wanted to partner [with Lilly and Disney] on this project.  To help people find the magic.

KERRI:  And can I just say that I think it's awesome that the prize for the winning contest entry helps bring a family to next year's Friends for Life conference?

DENISE:  It is amazing.  So truly amazing.  [And at that point, I could honestly hear her smiling, even over the phone.]

*   *   *

Thank you to Denise Jonas for her endless support of the diabetes community.  You can click here to learn more about the Once Upon a Time contest.  Hope to see the Jonas family at #FFL12! 

Now if only she could get Nick to visit the ladies at Clara Barton Camp ... I mean, he never had a chance to attend diabetes camp.  I'm sure they'd love to have him stop by.

Coco, Disney, Lilly, and Nick Jonas's ... Mom.

At Friends for Life, several members of the DOC had a chance to meet up with representatives from Lilly (one being the same guy who rode over on the Magical Disney Bus with me from the airport, and he had the most impossibly teeny carry-on bag.  Only a guy could pack business clothes for a week into one, single carry-on.  /digression and also, hi, Adam) to discuss a very cool partnership between Disney and Eli Lilly.

Oh yes, that's right:  Disney has it's own PWD. Her name is Coco.  She's a monkey. (Or "MWD," as Leighann so aptly put it.)  

Others have written about Ms. Coco and her diabetes bracelet of animated glory, but I wanted to chime in and add my excitement.  I grew up with images of Mickey Mouse and Donald Duck as parts of my childhood, and I knew plenty of kids who went to Disney World on vacation.  But I didn't know anyone else who had diabetes.  Now, diabetes has infiltrated the mainstays of childhood memories by becoming part of the Disney gang.  Coco, a monkey who clearly has the same affinity for bows as my daughter, is right there in the thick of the Disney mainstream, and sporting a busted pancreas.  This is awesome, because it gives little kids with diabetes a cartoon character they can identify with, and feel cool about. (And I'm secretly thankful that Mickey or Minnie weren't 'chosen' to have diabetes, since mice are always managing to get cured randomly.)

Part of this collaboration between Lilly and Disney is an update to the Disney Family.com website, featuring editorial and information specific to families with type 1 diabetes.  This, to me, is just as cool as that crazy MWD.  Disney is extremely well-known (see also: understatement of the year) and to have type 1 diabetes featured prominently in their space is nothing short of remarkable.  This is mainstream attention to a disease that was once sorely misunderstood and ignored.  (Now we're just slightly misunderstood and social media'd.)   Now you can visit www.Family.com and check out their diabetes offerings, anchored by the tagline, "Everyday challenges; everyday magic." 

And lastly, as part of this Disney/Lilly partnership (henceforth referred to here as "Dilly," because I can't type those two words over and over again without getting distracted), there's a contest.  "Once Upon a Time" is all about sharing the real stories of life with diabetes, and bringing more families into the magic of Friends For Life.  From the website

"Lilly Diabetes and Disney Online have joined forces to help families with children who have type 1 diabetes see the magic that exists in everyday moments.  It's all part of a new initiative designed to provide understanding and support to families affected by type 1 diabetes."

What happens next is an essay contest where parents of kids with diabetes are encouraged to submit an essay inspired by their child's experience with type 1 diabetes.  These entries will be judged, and the winning entry will score air fare, hotel, and conference registration for a family of four to attend the 2012 Friends for Life conference.  

To top it off, Disney and Lilly have added some celebrities to help raise awareness of their Once Upon a Time contest.  One of these celebrities is the mother of OMG NICK JONAS himself, Denise Jonas.  I'll be speaking with her this afternoon, and will share her take on all of this with you later today!

I am impressed.  This isn't just a drop-in-the-bucket kind of advocacy effort so a company can check their "We did our diabetes advocacy due diligence" box.  This is real.  A real Disney character with type 1 diabetes.  A real chance for a family to enjoy the magic of both Disney and Friends for Life.  I love this.

Obligatory disclosure:  I attended an information session hosted by some members of the Lilly team, and they filled me and some of my fellow PWDs in on this partnership information.  Per usual, my opinions are my own.  As are my typos.  

July 13, 2011

Finding Diabetes on Twitter.

One of the Friends for Life sessions that I co-lead with my favorite tall guy, Scott Johnson, was about finding diabetes support through social media.  (More on that session this week, but I wanted to get this post up today because there's a diabetes chat that takes place on Wednesday nights.)  While that session had it's own discussion points and a broad definition of what social media really is, the same question came up over and over again:

"Twitter?"

It wasn't even a whole question, more like a word thrown out to the crowd and lingering there, confused about where it should roost.  Twitter is a completely and utterly confusing concept to people who aren't involved in that method of communication - hell, it's chaos for those of us who are familiar with it, too.  But aside from questions about how to start a community or blog, and how control sharing on Facebook, some people really wanted to know how to navigate the muddy waters of Twitter.

In efforts to answer some of those questions from the session, I wanted to give a little Twitter & Diabetes 101 here, with links to resources, to help those who want to find people talking about diabetes on Twitter.  Here's the crash course:

What is Twitter?  Twitter is a method of online communication where you share status messages in 140 characters - and no more than 140. It's sharing in snippets; it's microblogging.  It's borderline annoying because you end up completely over sharing ("I thought about eating a ham sandwich in the alleyway ... but then didn't."), but it's a very unique, very real-time, very insightful way of connecting with people. 

  • Why would I want to share these details online?  That's a really good question.  Some people are very comfortable sharing details of their life, and links to things they think are interesting, which is where Twitter comes in.  It's like an RSS feed for your brain, and it helps lead you to new info on topics that interest you and from people who do the same.  (If you're concerned about privacy, you can always keep your account "locked" instead of "public.")
Hashtag central
Diabetes-related hashtags include word/phrases as obvious as "diabetes" but may also include things like "#ffl11" and "#sweatabetes."
  • What is a Tweet?  A Tweet is one, single status update from a Twitter account.  Oh, and it's also the sound that a bird makes.  
  • What is an @reply?  When you put the "@" symbol in front of someone's user name, it tells that person that the Tweet is directed at them.  It's like sending a 140 character email, in public.  (Also, you know if a Twitter account is shifty when they don't have any @replies and/or aren't following anyone.  Twitter is a conversation, not a billboard.)
  • What is a DM?  A DM (or "direct message") is a 140 character private message that you can send to a fellow Twitterer.  You can only direct message people who are following you back.

How do I join, and what do I do there?  To sign up for a Twitter account, go to Twitter and register.  You'll sign up, you'll be shuffled to your homepage, and there you can post your first status update, find people to follow, or just lurk on other people's accounts.  

So I'm on Twitter.  How do I find my fellow PWDs?  Okay, so once you're on Twitter, now you can dive Tweet-first (?) into the diabetes community there.  Finding your fellow PWDs can seem challenging, but there are tricks to help you sniff out the pancreatically challenged and those who support them. 

  • You can use Twitter Search to seek out the diabetes community by searching for specific search terms or hashtags.  Try searching for something as simple as "diabetes," or something as specific as "Dexcom."  You can also conduct searches right on the Twitter homepage, like for "diabetes."

  • You can also use the mother of all diabetes hashtags:  #dsma.  "#dsma" stands for Diabetes Social Media Advocacy, and it's the brainchild of Ms. Cherise Shockley.  On Wednesday nights at 9 pm EST, hundreds of people with diabetes log on to their Twitter accounts and crowdsource answers to questions asked by the DiabetesSocMed Twitter account
It's pretty simple:  The @DiabetesSocMed account asks questions and numbers them, and then when people respond, they just answer with the question number and the #dsma hashtag in their Tweets.  For example:
An example of the #dsma Twitter discussion questions
There's the question (Q1) and my answer, tagged with both "Q1" and "#dsma."  The only trick is that during the actual #dsma chats, there are many participants, so there are many questions and answers streaming at once.  It can be a little overwhelming at first, but after a few run throughs, you'll be a pro.
  • And even though you're using Twitter, you aren't limited to using "just Twitter" to send out or read your Tweets.  There are a lot of third-party applications for Twitter that you can download to your desktop or use a browser for.  Here are a few of the ones I use:
  • Tweetdeck.  This is my favorite application and the one I use most for Twitter.  It's clean, easy to use, and runs pretty seamlessly on my laptop.  
  • Seesmic.  I used to use this one all the time, but I kept blowing out my API.  (What does "API" stand for?  Available Peanut Index?)  Seesmic can also be used to update your Facebook and Twitter status, so it's kind of handy for all things social media.  (Tweetdeck can, too, actually.)
  • TweetChat.  This is a web application where you can type in the specific hashtag you want to follow (for example: #dsma) and all of the Tweets tagged with that hashtag stream on the TweetChat page. 
  • Twitpic.  This app helps you share photos on your Twitter feed.  You can take photos on your phone or upload them from your desktop and ship them straight to your Twitter stream.  (There is also a pile of apps for Twitter using your smartphone, but I know what I know, and I have no idea which ones are good or bad.  Consult your local TechNerd for some details and a cupcake.)

Phew!  Crash course on Twitter and finding your fellow PWDs?  There's at least a start.  I hope this helps, and if you're looking to jump right in, you can join the #dsma chat tonight at 9 pm - the only thing we're missing is YOU.  Join the 140 character conversation ... and make sure you have coffee on hand.  It's the most whirlwind hour of diabetes discussion on the web. 

(And I'm adding a diabetes Twitter list to the blogroll page, so if you're a PWD with an active Twitter account, leave your Twitter handle in a comment and I'll add you to the list!  You can find me on Twitter at @sixuntilme.)

July 12, 2011

IDF: Diabetes Affects People.

IDFDuring the course of the Roche Summit, I felt very lucky.  Lucky to be part of a group that's invited to hang out in a cool city, in a fancy hotel, and to have a company willing to put up the cash for this event.  I thought about how lucky I was to live in a country where, despite our complaints about health care systems and insurance premiums, we still have access to insulin, and to resources that can help us gain access to insulin in dire circumstances.  

Actually, I felt freaking spoiled.  

I do earn my income as a writer, and I do write often for diabetes-related publications, but it's not a job.  I attend diabetes-related conferences and I speak at many health events, but it's not a job.  Diabetes is not a job.  Diabetes is a disease.  Not an industry.  As someone who lives with this disease every single solitary day, and who has no memory of life without it, I cannot it a "business."  While Pharma and device companies might want to call us "consumers" or their "client base," we're people.  People first.  And last.  And all the bits in between. And we all have the very high honor of being part of a community of passionate people who truly understand.  People who get it and know that diabetes is every day, every moment, and affects every one of us.  Which is why I know that, if any group can literally change the world, it can be us, the collective diabetes community, both online and off.

During the course of the Roche Summit, Isabella Platon from the International Diabetes Federation spoke with the group of us.  I read Scott's post on this, and I have to agree - as a group, we could have been far more receptive.  Our complaints were valid (get to know us and our community, read out blogs, reach out in a more personalized manner, etc), but these complaints would have been more appropriate if directed at a company.  Not an advocacy organization.  Not an organization aiming to provide insulin for people who, even 90 years after its discovery, still can't get their hands on a vial or a clean syringe.  I don't care if the people at the IDF know my name or have ever heard of my blog.  Their job isn't to coddle me.  Their job - goal - is to change the world for people living with diabetes on a global level.  

Jean Claude Mbanya, President of the IDF, met with our group informally during dinner, and he spoke about how diabetes affects people.  PEOPLE.  People who are born in the United States and have access to decent care, but also the people who, by chance or circumstance, do not share this same opportunity.  People. 

Diabetes affects people.

I support the vision and the mission of the IDF.  I want to do what I can to help people with diabetes survive, despite circumstance.  And I think our global community of PWD deserve as much help as we can get.  

I believe that there are more opportunities to mobilize our community and make a tangible difference.  One thing we can do, today, is to help raise the awareness of the state of diabetes to the Obama White House.  The IDF website said it best:  "We need to convince President Barack Obama to show up and represent us at the UN Summit on September 19 - 20."  And we can do that, in part, by inundating him with postcards with our request.  Visit the O is for OUTRAGE section of the IDF website to quickly and easily send your message on to President Obama

Having the power to change the world means nothing if we don't harness it.  We need to raise our voices, together.

July 11, 2011

CWD: Catching Up.

With early morning "fun runs" (note: fun never equals run, as far as I'm concerned), non-stop Friends for Life sessions, business meetings, excessive drinking of both the Diet Coke and perhaps a shot of Patron or two (don't judge - humans attend Friends for Life, too, you know), and a severe lack of WiFi in the Coronado Springs Resort down at Disney World, blogging was hard last week.

Actually, I barely acknowledged the Internet last week.  Once I was back in my hotel room each night, I face-planted into bed instead of doing some writing.  But it was amazing to be so present at this year's Friends for Life conference, instead of concentrating on emails and other online messes.  This conference was emotionally exhausting in the most beautiful way, and has completely and utterly revived my diabetes management.  (FFL : diabetes defibrillator as fun : not running?)  I've reconnected with some of my favorite diabetes family members, and met some new ones I have been itching to hug in person for months now.  So much to think about, so much to say, and so, so much coffee is needed to process this stuff.

The words are still queuing up in my head, but today is a travel day, so I'm still not reunited with my office.  However, while my blog collected a little dust last week, thankfully my camera did not. 

 Scott, Kerri, and George at Friends for Life.  They are indeed my "insert conference title here."
Scott, Kerri, and George.  [Insert name of the conference here.]

Creative Muscle 101
Me with Peter Nerothin of Insulindependence.  His organization is one I'm looking forward to sharing more details about here.  He's a brilliant guy with some seriously fashionable pants.

Me and my "first child." 

Sara(aah) and I thought we would wait until we were both completely exhausted and totally beat down to take a photo together.  :)  But we DID it!

Jacquie is awesome.  As you probably already knew.

Meeting Jacquie from Typical Type 1 was a huge highlight for many reasons, but once I realized we shared a common sense of fashion, it was total game on.  (Ann Taylor Loft skirts for the frickin' win.)

Scrumptious ... the FOOD he cooks, you perverts!  Not him!
As a person whose pots and pans are most often clean and covered in a thin layer of dust, meeting Chef Sam Talbot was mostly exciting because he's tall, has type 1 diabetes, and enjoys a good cuss now and again.  While I plan to purchase his cookbook, I am terrified to attempt the recipes and will most likely notify the fire station when I crack the spine of that book.  But PWD FTW once again.  :)

So.  Embarrassing.
And this sad photo.  Of me, stuck in the pouring rain in my CWD rain poncho.  It started pouring in the Magic Kingdom on Sunday, and I didn't notice.  (I was fiddling with my cell phone while waiting for Chris - who flew down on Friday night to enjoy the weekend in Disney World with his frazzled wife - to finish up a phone call in a different area.)  Then the sky opened up, and I ended up stuck underneath an awning for about 20 minutes, strategically positioned underneath a narrow window awning. Chris was across the "street" and safely in a shop, with several dozen people, all facing my soggy, soloist self.  He tossed the CWD poncho across the alley like a life preserver, and people waved at me while I stood there - completely by myself and being pelted by raindrops - across the alley. Most awkward moment, by far, of the whole vacation. 
 

I miss my PWD friends.  And I can't wait for next year's conference. 

July 06, 2011

CWD: Snapshots from Day One.

So busy, but wanted to check in and say hi!  And share a few photos:

Adults with type 1 at CWD.  Chillin'.
A group shot from our Adults with Type 1 meet and greet.

I love these people.
Some of my favorite PWD (and that awesome PWoD)
 

July 05, 2011

From Abby: Through the PWD and HCP Lens.

Today starts the Children With Diabetes "Friends for Life" conference down in Orlando, Florida.  (Or for me, anyway.  Apparently, some of those families have been there for days, enjoying the sunshine and theme parks.  I cannot wait to join them!!)  While I spend the day traveling, Abby has some further insight on the TCOYD conference last month in Albany, NY.  Her views through the lens of both a future healthcare professional and a patient makes for a poignant, and unique, perspective. 

*   *   *

These things are always cold.  WHY?At TCOYD a few weekends ago, the last session we attended involved both PWD and health care professionals. (My endocrinologist was in the room, which made me really proud.)  Dr. Edelman and Dr. Polonsky facilitated a discussion where PWD could express their feelings about what frustrated them with health care professionals, and HCPs could voice their frustrations with patients. I cannot stop thinking about the topics brought up in this session. I felt a little torn. I’ve been a PWD a lot longer than I’ve been an HCP (I know I’m not official yet, but for the purpose of this post, let's just go with it). 

I’ve been through nursing school. I’ve seen the patients who aren’t compliant, diabetes notwithstanding. I’ve given information to people, explained it, answered their questions, only to have them tell the next nurse they’d never heard of it. It can get really frustrating to be on the other side of health care - the provider side.  Some of the complaints from PWD could have been easily explained if they understood why the HCPs were doing what they did. 

There’s been a lot of talk about the “red circle approach” lately, and I just want to clear things up a bit.  I do it, with my kids at camp. It’s an incredibly useful tool in finding patterns of blood sugars that are out of range, so they can be fixed. That being said, doctors don’t tell you that. They give you the “eek, you’re always high at dinner… why?” question, and that feels defeating. My solution: print your own numbers and circle the ones you don’t like. That way it’s a useful tool to you on any average day, you're in control, and you won’t get so mad when your HCP does it at your visit.

Conversely, there are patients who don’t bring numbers to their appointments (my last endo I showed up with three days worth of info on my pump, and a week of wicked random numbers on my meter … guilty here). How can we expect a HCP to provide quality care when we aren’t giving them any information to work with? Log books suck, they are small, messy, and don’t have the right boxes for the amount/times we check our blood glucose – but we have to come to a compromise.  We at least have to bring some information we can both work with.

Oh, and another thing – that one HCP who said "I get up at 5 am to exercise every day, I just don’t buy it when my patients tell me they don’t have time to exercise." To you I say this "Come talk to me after you wake up with a blood glucose of 37mg/dL at 2 am, over treat because you feel like you’ll die if you don’t, then see a blood glucose of 285 mg/dL at 5 am when you wake up for you run, and let me know how that works out for you."

Overall, I think this session went really well, and the doctors leading the discussion made a lot of good points. It definitely left me thinking about how I’m going to treat patients (even those without diabetes) and how I’m going to approach my own, personal future doctor visits.  I just think that sometimes when we’re frustrated about something, we need to take a step back and try to figure out why it’s happening, and what can we do to fix it.

And if you ask your doctor to please use a highlighter instead of a red pen, I’m sure he/she will accommodate.  Makes those circles look a little friendlier.  ;)

*   *   *

Having just had my endo appointment last week, I'm left wondering how I could have been a more empowered patient.  (And by "more empowered," I mean "Could have brought more than a week's worth of blood sugar logs."  Guilty here, too, Abby.)  What do you wish you could tell your doctor in efforts to improve your patient experience?  And what, as a patient, can you improve on to help your doctor? How can we make endo appointments less eh and more yay?

July 04, 2011

Happy 4th of July!!

Happy Fourth of July!!

Happy 4th of July!!

Love,
The Bird

July 01, 2011

New Animas Vlog: Welcome to My Garden Party.

Normally, I have reasonable control of my nouns.  I know the words for things, but for some reason, this video had me completely tongue-tied.  I tried to talk about how moments of exercise have been sneaking into my daily routine, almost by accident, but ended up talking about the "secret weapons" of my garden. 

I apologize for not knowing the word "watering can."  Somehow, it completely escaped me.

(Also, my columns have been updated for June on "Life, Uninterrupted."  Skip on over to read "Those Online People" and "The Pee Alarm."  Thanks for checking them out!)

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