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March 26, 2013

I Have the Right.

I have the right to opt out of the TSA body scanners.  I have the right to stand there, politely, and wait for someone to manually inspect my diabetes devices.  I have the right to decline to send my medical devices through the scanning machines.  I don’t make unreasonable demands during airport security screenings, and I follow the rules as they are laid out to me.  

But, rules or not, I have the right to be treated like a human being, instead of having a flock of TSA agents stand beside me and talk about my diabetes devices – the one attached to my body, not theirs – without even looking at me.  And when they do look at me, and I try to smile at them to remind that I just want this to be cool and easy and not a big deal, they don’t even acknowledge me.  But I’m supposed to let them touch me.  Most often, the agents treat me as they'd like to be treated, but over the weekend in San Francisco, it was more "do as I say and don't question my authority."

I have the right to be listened to.  I don’t expect every TSA agent to be familiar with the devices I am wearing, which is why I am happy to answer any and all questions.  I do want to help.  “What is that?  I’ve never seen that before,” the TSA agent says to her supervisor, pointing to the Dexcom G4 transmitter bulge on my left thigh.  They both lean in, close to my body, and stare for a few seconds.  “It’s a diabetes device, a continuous glucose monitoring device,” I say.  “I was asking my supervisor, ma’am.  Not you,” is the response.  Oh?  Cool.

I have the right to lose my patience, too.  I don’t exactly want to be wearing these devices.  I’d kind of rather not have diabetes, or to have to discuss it in great, but ignored, detail at airport screenings in front of dozens of people.  I’m trying to be really, really smooth about this whole thing because I’m pretty sure the TSA agents see a lot of nonsense during the course of their day, but why can’t they extend me the same courtesy?  

I have the right to request to be shielded from embarrassment.  I get embarrassed when I explain that the sensor and transmitter are physically attached to my body, and you ask me ten times if I can just remove it and send it through the scanner.  I get embarrassed when I have to show it to one, then three, then five different people.  I get embarrassed when I see women watching me through the glass as they put their shoes back on, humiliated on my behalf as they see the TSA agents asking me repeatedly to lift my shirt to show the pump, or roll up my pants leg to show the sensor.   Why are these screenings not the same, across the board?  If I had known this screening was going to be such a crummy one, I would have definitely taken them up on the private screening room option.  Sure, I am read the same boilerplate each time, but the physicality of the screening varies so much.  Most of the time, I am not embarrassed.  But for the times when I am, that embarrassment is thorough and complete.

I have the right to request that my decisions be respected.  Why does the agent have to roll their eyes when I respectfully request an opt-out?  “All of those devices can go through the x-ray machine, and you can go through the body scanner,” is what I’m often told, and when I decline (again, respectfully), I get stared down, as if I’m a jerk for wasting their time.   I don’t mean to disrupt the flow of their day, but they made me feel like a crumb, like I did something wrong for wearing these devices and opting out of the scanner devices. For making a choice I have the right to make.

I treat you with respect, and courtesy, and I try to make the screenings at airports as pleasant as I can.  I am only asking for the same in return.  “We’re just doing our jobs,” is the reason given for this lack of respect, and that’s supposed to be justification.  “I’m just minding my health,” is my reason for making the decision to wear these devices, and yet I’m treated at best like a criminal and, at worst, like an animal at the zoo.

It's not about the TSA knowing everything about diabetes.  It's about being treated with respect.  I'm angry, and I have that right.

March 04, 2013

News from the DRI.

Tick tock.CBS 12 news in Boca Raton posted this news item, with a video, about the Diabetes Research Institute's announcement tomorrow.  It's just a morsel of what I'm hoping we'll see in full during tomorrow's announcement.  Click here for the video (as I could not, for the life of me, figure out how to embed it into this post), as it's the meatiest part of the article.

From reporter Suzanne Boyd, at CBS 12 News"The problem with implanting these islet cells into the liver is that the patients have to take anti-rejection drugs, so it's not really a cure.  The next phase of the project is to create a mini organ, sort of a bio hub for these cells that can then replace the patient's pancreas." 

I am all about moving forward with cure research and fueling - hope towards that cure, but at the same time, I need to remain firmly rooted in realism. I want people to hear this news and become/remain inspired, not have their hearts broken because it's not what they want most.

That said, this is exciting news on the research front and I hope someday someone finally takes a bite out of the "five to ten years until the cure" time frame, because I've been hearing that same promise for twenty-six years and counting.

Bring it on, researchers.  We're more than ready.

And here we go. Video about the BioHub:

And a link to the BioHub FAQ page on the Diabetes Research Institute's site.

Diabetes Mine has a great write up about the BioHub on their site. Check that out for info on how this is good news, but not new news. Hopefully next time there is research progress to report, there is more fact than hype.

February 09, 2013

Spare a Rose, Save a Child.

Spare a Rose, Save a ChildValentine’s Day is coming up, and we, as a community, have a chance to show some love for people around the globe with diabetes.  A small group of us – Kelly Close, Manny Hernandez, Bennet Dunlap, Adam Brown, Jeff Hitchcock, and I – with the support of some friends at Johnson & Johnson, got together recently to see how the diabetes community could use social media for social good, and a wicked cool and powerful idea was born.  

We want to help the Life for a Child program, sponsored by the International Diabetes Federation, which aims to take “contributions from donors [to] go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive.”  Our idea was to take the typical “dozen roses,” so popular on Valentine’s Day, and save just one rose to spare the life of a child. “Spare a Rose, Save a Child” is simple:  buy one less rose this Valentine’s Day and share the value of that flower with a child with diabetes in the developing world.  Your loved one at home still gets flowers, and you both show some love to someone who needs it.

We also want to raise more awareness for the Life for a Child program, and we hope that our friends in the DOC will help with this effort.


Here’s what you can do to help:

  • The week of February 10 – 16th, please help raise awareness for the Life for a Child program by blogging, Tweeting, Facebooking (is that an official verb? probably not, but it works), etc., about the organization and the Spare a Rose, Save a Child effort.  The earlier we can get the word out about this, the better.
  • If you’d like, you can download an image to use for your post, or host it on your site for the week of Feb 10 – 16th.
  • Please use the URL: http://bit.ly/SpareRoseSaveChild to link to the IDF site.  (This is a short URL we’ve created so we can see how much impact our social media campaign has generated.)  For more information on the Life for a Child program, please check out that link.  
  • Also, if you do decide to post about this effort, would you please leave a comment on this blog post so we can keep track of the posts that were in support of this effort?
  • The hashtag for this effort is #sparearose, should you be feeling Twittery.

This Valentine’s Day, we can both show our affection for loved ones at home and give a little help to those we have some much in common with around the world. It is a simple, caring, but life-changing message.   And it shows that the diabetes online community takes care of one another, both online and off.

Thank you for reading this and for everything you do as part of this community.  Seriously - thank you. 

Update (Borrowing Manny's comment):  Since some of you out there in the DOC have been wondering about this: this idea didn't come to us from the International Diabetes Federation (which is why you won't see the "Spare a Rose, Save a Child" campaign reference on the Life For a Child web site.)

This was an idea that emerged from a group of us at the DOC, to support this worthy cause through our collective power via social media. Let's show our support and save the lives of children with diabetes around the world who otherwise cannot afford their insulin and diabetes care!

Updated:  Here's a link list of sites that are helping raise awareness.  If yours isn't on here, please comment with a link!

February 04, 2013

Diabetes Art Day: Humalog Lights.

Today is Diabetes Art Day, 2013 edition!  To check out the art that's being created and submitted to the Diabetes Art Day website, click on the link and spin through the 2013 gallery.  There's already some fun stuff up there.

For my arty attempt, I used insulin bottles as my "medium."  Someone had mentioned you could make Christmas lights out of empty insulin bottles, so i wanted to take a stab at it.  (Hang on ... there are even more horrible phrasing moments coming.)

The beginning of this hand-cramping mess.

All I needed:

  • Empty insulin bottles
  • A good, long screw
  • Christmas lights
  • Patience

Okay, so first off, you need to drain all the insulin from the bottle.  I've been collecting these bottles for the last few months, so I had some spares that I had injected every last unit of.  

To get the white rubber stopper out of the bottle without ruining the cap, insert the sharp end of a two inch long screw into the bottle stopper and push it through.  Then, as you pull it back out, the stopped will start to pull through the top of the bottle.  You'll need to grab the stopper with your fingers and shimmy it out, which sounds nice and easy, but it made my fingers cramp.  Those stoppers are slippery!

Once the rubber stoppers are out, you shove the light bulb into the top of the bottle and then display as you see fit.  I saw fit to stick them on this big metal tree thing we have on one of our walls.  They look festive, in that "your pancreas is busted" sort of way.

Happy Diabetes Art Day!!

Viola!  (Pronounced "vee-ooh-hahn-geespee.")  You have insulin bottle lights.  Which means your holidays may smell like bandaids now.  

Happy Diabetes Art Day, and thanks to Lee Ann for creating something even the most un-arty of us (read: me) can enjoy. 

January 24, 2013

Guest Post: Going Beyond 140 Characters.

I'm very honored to be hosting a guest post from Matt Cameron, who I met at the Australia Social Media Summit back in November.  Over several (read: six dozen) cups of excellent Melbourne coffee, I had a chance to chat with Matt and get to know this fellow over-caffeinated kindred spirit.  Today, he's writing about his new diabetes blog, Insulin Pumps Need Tetris.
*   *   *

He wants Tetris on his pump.Hi, I’m Matt from Melbourne.

Long time blog reader, short time blog writer.

Before attending Australia’s first Diabetes Social Media Summit (#OzDSMS), organised by Renza and Kim at Diabetes Australia – Victoria I thought I had two things stopping me from writing a diabetes blog. The first factor being the lack of time, the second factor being the lack of a slightly humourous blog title.  Some might argue that I still have neither of these things in my favour, but following the event, I decided to launch my blog – Insulin Pumps Need Tetris – anyway.

This was a group of people that I had largely met via Twitter, brought together by the fact that we share diabetes and a passion for improving lives for people diabetes. These people have made me feel more inclined to tweet about my diabetes, and #OzDSMS made me realise that I can be a part of our great Australian Diabetes Online Community in a way that went beyond 140 characters. That is, by joining what is a growing blogosphere in Australia.

I have quite often been guilty at lamenting that people do not “understand” type 1, that the media misrepresents type 1 ALL THE TIME and that product companies often do not engage with people living with type 1 nearly enough, resulting in products that just miss the mark. Writing a blog allows me to go a step beyond lamenting these issues and doing something a bit more constructive.

So, why “Insulin pumps need Tetris”? Soon after getting my insulin pump earlier this year, a close friend soon asked me how I was going with my newly acquired gadget. My response?

“I have no idea why I didn’t get a pump sooner. The only thing that would make my insulin pump any cooler would be if it had Tetris on it. Insulin pumps need Tetris."

(You can read more about that here.)

In some ways, diabetes intersecting with the online world is not new to Australia. We have had the benefit of the Type 1 Diabetes Network* - Reality Check forum for a long time that provides people with a chance to discuss diabetes with friendly faces/usernames; anonymously if they wish.  But in another way, the Australian Diabetes Online Community is in its infancy here. Until recent years, the blog scene has been fairly sparse and until even more recently, the twitter scene has been fairly disconnected. But this is changing - big time.

The Australian Diabetes Online Community is going gangbusters. Take my story as a case study – started on Reality Check, started reading blogs (happy to note that SUM was one of the first I stumbled across), created a twitter account, found a whole diabetes community on twitter, started tweeting about diabetes (apologies for all the other sports tweets if you follow me!), met people from social media in real life... to talk about social media, coordinate social media activities for the Type 1 Diabetes Network and now created a blog of my own.

Simon and Matt

This is all because I now feel comfortable to put my thoughts about diabetes on paper (iPad technically) due to the supportive environment that the DOC and the OzDOC provides.

We are quite lucky in Australia. We have the National Diabetes Services Scheme, considerable health professional expertise, insulin pumps are increasingly accessible and there are numerous organisations supporting people with diabetes. But there are things that need attention and for the first time, social media is allowing us to influence and drive the agenda in a whole new way.

For example, Renza’s blog post on issues regarding driving and diabetes guidelines in Australia has resulting in mainstream media attention and political interest.

All of this was not even in the realm of possibility when I was first diagnosed in 1996. I am hoping that my blog can, in a small way, complement the work of my friends and colleagues in across the Australian Diabetes Online Community, and abroad.

Note 1: My sincere thanks go to Kerri for allowing me to provide a guest post on her super awesome blog. It was an absolute pleasure to meet Kerri during her time in my home state of Melbourne, and look forward to her return visit at some point (although I’m sure she’s not looking forward to the flight!).  [Editor's note:  Thank YOU, Matty, and I'm actually looking forward to coming to Australia again!]

Note 2:  I am a committee member of the Type 1 Diabetes Network but these thoughts are my own!

*   *   *

Thank you so much, Matt, for introducing yourself, and for everything you do for the global diabetes community.  Oh, and thanks to Melbourne for having such fantastic coffee! And lastly, I wish Cat Tetris actually existed.

January 23, 2013

Natalie Irish: Artist with Diabetes.

Natalie Irish is an artist who paints portraits with her mouth, using lipstick as her "paint" and her lips as the brush.  While this is impressive all on its own, she creates her art all while wearing her pink insulin pump on her hip.  I heard of Natalie through my friends at Animas, and when I watched her on Conan O'Brien, talking about her artwork with her insulin pump infusion set up on her arm, I knew I wanted to know more. 

Natalie was kind enough to spend some time chatting with me on the phone, and the girl is an advocacy powerhouse, using her talent and creativity to bring both art, and diabetes, to a world stage.

Natalie Irish.
Kerri:  So when were you diagnosed with type 1, and what was that diagnosis journey like?

Natalie:  I actually have my diagnosis date tattooed on my wrist as my medic ID symbol.  It was the day before Halloween in 2000.  I had just turned 18, senior year of high school.  "Here, let's start your life over from scratch!"  It was one hell of a time to get a diagnosis.  I was ready for life changes, but this was more, "Hey, forget everything you know about how to live your life."

Kerri:  Not to mention it's the day before the biggest candy-focused holiday in the United States.


Natalie:  Yeah, which is why my friends and I always had a few laughs about the date.  "You got it just in time!"

Kerri:  Did you have any knowledge of what diabetes was before it became part of your life?

Natalie:  I don't really have any close relatives with diabetes … I have a great aunt, but no one in my normal life.  And I thought I had been going crazy, because [the diagnosis] had been building for a couple of months.  I ended up going to the doctor, and then to the hospital, and when they said the word "diabetes," I was actually relieved because I thought I had been losing my mind.  I mean, I was sleeping all the time, I couldn't focus on my sculpture classes, I was a zombie, you know? 

So I sat there in the hospital and thought, "Okay, what do I know about diabetes?"  I remember reading something once about pig insulin and, sonofabitch, that movie Steel Magnolias.  Unless you have direct contact with someone who has type 1 diabetes, people don't really know a lot about type 1 diabetes. 

I had the rest of my senior year and that summer to learn about it, and how to take care of myself.  My parents, always huge supporters of everything, they had to learn about it, too.  And honestly, sometimes I'm a little jealous of kids who've had this forever, because they KNOW it more.  I felt like I was playing catch up, learning about this and figuring out college and jobs … it was really crappy timing.


Kerri:  How soon after your diagnosis did you start pumping, and how has that experience of becoming a cyborg been for you?

Natalie:  After my diagnosis, my endo wanted me to wait at least a year before switching to a pump, but after about six months, she was like, "Yeah, let's get you on a pump." 

Kerri:  So going from not diabetic, to all of a sudden syringes, to now being a self-described cyborg.  I know working through that physically is a journey on its own, but how did you work through that emotionally?

Natalie:  Hell, I'm still working through that emotionally!  I love that all the blogs and the websites are now starting to talk about the psychological side of diabetes.  I talk to myself a lot, like when you get a bad blood sugar and the first thing I think is, "Oh, what did I do!"  I know it's my body that's a little jacked up, but I need to explain to myself that not everything is in my control, and sometimes you slip up, but this isn't my fault and I need to keep moving forward with this.

Kerri:  So it's not just about our pancreases, but it's our heads too?

Natalie:  Yup - just add it to the list!

Kerri:  What's the most frustration misconception for you that society has about diabetes? 

Natalie:  "Oh, you have an insulin pump?  You must not be taking care of yourself."  And I'm like, "Well first of all, that's none of your business.  But second of all, it's a very different disease from type 2 diabetes, and I just want to educate people about it, let them know about this.  Don't ever assume that you know about a disease just because you have a family member with it, or you read about it - do more research!  A little research isn't going to hurt you.

And sometimes I feel bad, because I know people have good intentions and are trying to be helpful.  But then I start explaining the difference [between type 1 and type 2], and they still don't believe me.  It's at that point I'm like, "Go home and Google it," but I just want them to know what type 1 is all about.  No matter how great of care I take of myself, I'm still going to have it.  If I eat better, exercise more?  Still going to have it. 

Kerri:  What kinds of jobs did you have before you landed on your current work?


Natalie:  No matter what job I had, I always did art.  But I've done everything from painting houses to working at a veterinary clinic, to slinging hay and seed at a feed store, to mucking stalls … I've done all kinds of stuff.  I've taught art classes for kids … I've worked at a nail gun store.

Kerri:  They only sold nail guns?  That's super niche.

Natalie:  Yes.  I've also sold tires.

Kerri:  Every person with diabetes sells tires at one point or another.  It's like a thing.  


Natalie:  It's a hobby - you didn't know that?

Making it happen.  (Image from Natalie's FB page)
Kerri:  So can you describe the process of making a portrait with your lips?  Do you sketch an outline first?  I'm so curious.

Natalie:  Think of how you would create a drawing.  I'll have some ideas, I'll sketch them out, and then move to the canvas.  If you're working with paint and charcoal, etc. you're going to lightly sketch out your proportions and draw out your image.  Well I do the exact same process, but the only thing that touches the canvas is my mouth.  And my eyes actually get more tired than my mouth, because being that close to the canvas can make you go cross-eyed pretty quickly.  I work in short sessions, but that's part of the challenge.  There was a lot of trial and error, and I have so many shoeboxes filled with lipstick - actually, I make my own lipstick these days.  I'm still feeling out the medium.  At first, it was important for me to keep the integrity of the individual lip print, but now I see how much blending I can get, or glazing, or underpainting. I want to see how far I can take this medium.  It's a constant process.

Kerri:  Bringing diabetes back into the equation, do you have plans to use your platform as an artist also as one for diabetes advocacy? 

Natalie:  I have spent the last year or two being busy with my art, but man, I love going in and talking to people, getting information out, getting more funding for research … that is so important for me.  JDRF is really good at making it so easy to become active in advocacy.  They make it almost simple to send emails, sign petitions … every little bit helps.  

Thank you, Natalie, for taking the time to talk with me and both for your artistry and your advocacy.  If you want to check out Natalie's work, you can visit her website, or give her a shout on Facebook

January 01, 2013

The Proof is in the People.

diaTribe - the littlest one.Happy New Year!!  The 50th issue of diaTribe came out last night, with a really amazing letter from editor Kelly Close, insight from the advisory board, and my response to the NPR article that came out in early December.

"Earlier this month, I was part of a piece put together on NPR about diabetes and social media, which focused on how pharma and patients interact in this medium. The NPR article referenced a quote from Dr. Jason Bronner that ruffled feathers not only in the diabetes online community, but in many other patient communities across the web. 
'But what are patients getting out of social media? It's unclear whether connecting online is helpful for adults treating diabetes. "There's no proof in diabetes that social networking is helpful," says Jason Bronner, a doctor at the University of California San Diego Medical Center. He's leading a study that will help determine whether social networking can actually help patients manage diabetes.'
I wish the focus of that NPR piece had been on the community.  Because even though Big Pharma (and their medical device friends) can be an important group for patients to be interacting with in efforts to influence new product development, etc., the most important interaction is between patients and … patients. The diabetes online community may serve many communication purposes, but at the core, it’s built for connecting people to people.

What are patients getting out of social media?  I hear this question being raised by researchers and healthcare professionals and all kinds of voices across the caregiver spectrum, and I am filled with frustration at the lack of data that proves the positive impact of patients connecting with other patients online."

Please check out the rest of this article, with quotes from fellow PWD voices - including Manny Hernandez, George Simmons, and Briley Boisvert - over at diaTribe. (Also, if you aren't subscribed to diaTribe yet, 2013 is a good time to start!  You can sign up to receive the newsletter here.)

December 03, 2012

PWD in the Wild.

We were sitting at the coffee shop having a really nice Melbourne cappuccino (they make the best cappuccinos I've ever had in my whole life, with the steamed milk almost like a marshmallow topping on each coffee - amazing), talking about the Australian diabetes social media summit. The weather was sunny and crisp, with plenty of other patrons enjoying their caffeine jolt at the outside cafe tables.

"I guess when I was diagnosed, it didn't matter much to me that I didn't know anyone else who had diabetes.  I didn't really know what diabetes was.  But as I grew older, I wanted to find that community, and that's where the Internet has helped tremendously," I said to Renza, talking about the impact of the diabetes community on my emotional well-being.

"And here we are now," said Renza, laughing as she stirred her coffee.

No joke - Melbourne has the best coffee I've ever tasted.

We chatted on about the Summit the day prior, and what we thought of it. And then our conversation tumbled into our personal experiences with diabetes and pregnancy.  Thinking back on this conversation, we probably said the word "diabetes" at least a dozen times in a ten minute conversation.

Which is probably why the young woman was staring at us from her table, just a few feet away. She was holding her coffee cup near her mouth, but hadn't had a sip yet.  She was fixated on us.  Her young daughter was drinking a frothy mug of hot chocolate, swinging her feet as the wind caught and tousled her bangs.  

"Excuse me," she said, almost to herself.

My seat was facing her table, so I leaned in and said, "Hello!"

"I couldn't help but overhear - you both have diabetes?"

Renza shifted in her seat.  "Yes, yes we do.  I'm sorry - were we being too loud?"

The woman laughed nervously, her cup still close to her mouth but merely an accessory at this point.  "No, not at all.  I was happy to hear ... I mean, my daughter was just diagnosed with type 1 diabetes a few weeks ago.  We've never met anyone else who has diabetes."  She made a sweeping gesture with her hand.  "And here you both are!"

"Real life people with diabetes, in the wild," I smiled.

Renza leaned back and extended her hand, introducing herself and explaining to the woman that she had type 1 diabetes and also worked down the street at Diabetes Australia Vic.  "You can come visit us any time you'd like - and I'm at this coffee shop all the time."  She handed the woman her card.

Thank goodness for the poise and professionalism possessed by Renza.  I couldn't help myself - I waved animatedly at the girl and her mother and this stream of information passed my lips:  "I'm Kerri and I live in the United States and I've had type 1 diabetes for twenty-six years and I have a husband and he and I have a daughter who is two and a half." 

I wanted them to know I was okay, and that even though my life has included type 1 diabetes for several decades, I was still okay; it was a consolidated diabetes life story in one messy sentence, delivered with a caffeinated edge. 

"How are you doing?  How are you both doing?"  I asked.

The woman looked at her daughter, who was staring at us.  "We're good. We're doing good.  We come to this coffee shop often because they are the only ones who really listen to how I want her hot chocolate prepared.  Her daycare is right around the corner, so it's a nice place to stop.  They do listen ..." her voice trailed off.  

"We do know." 

We talked for a few minutes, and the woman gathered up her belongings.  "It was so nice meeting both of you.  Really.  Thank you."  Her daughter stared at us with her big, brown eyes, the same as her mother's.

"Our pleasure.  I hope to hear from you.  Please do reach out," said Renza warmly.

The woman took her daughter's hand and crossed the street toward the daycare center, her delicious Melbourne coffee still untouched on the table but every single sip of her daughter's special-made hot chocolate all but devoured.

November 20, 2012

Diabetes Zoetrope: All We Need is a Strobe Light.

At the Australian Centre for the Moving Arts, Chris and I saw this zoetrope thing crafted in the likeness of Ty the Tasmanian Tiger (wiki info here). Fully lit and standing still, this exhibit looked like an overzealous layer cake, and didn't impress me too much.

But then the music starts. And the thing starts to spin, blurring the little figurines together. And then the strobe light switches on, and it becomes something I stood there and watched about fifteen times. So fluid, so seamless, so detailed without seeing any of the real details. 

The work that went into creating this exhibit is tremendous, but you don't see all that effort when you watch it.  It's hard not to marvel at the magic of how all those details become art.

Diabetes, to me, is exactly like this zoetrope.  All of the details of diabetes management, mapped out with precision and painstakingly attended to?  The blood sugar tests and the insulin boluses and the mental math we attempt in our heads whenever a plate of food is served?  Thinking ahead to make sure we have insulin in the fridge when a bottle runs dry?  Knowing that feeling of waking up with glucose tab dust on your pillow case?  Planning and scheduling and worrying and panicking?

It's all a blur.  And when the day starts spinning and life is moving forward, you don't see any of it.  You don't see diabetes and all its details. Sure, you might spy an insulin pump clipped to someone's jeans, or you see evidence that there was another PWD in the wild when you spy their test strip on the floor of the public bathroom, but for the most part, you don't see diabetes when you see people living with it.  You see them.  You see their life. 

The work that went into creating this exhibit is tremendous, but you don't see all that effort when you watch it.  It's hard not to marvel at the magic of how all those details become life.

November 08, 2012

The Question.

"How old is your daughter?"

"She's two and a half."

"Oh, that's a fun age.  Does she have diabetes?"

"No."

"Will she get it, too?"

And this is where I end up tangled in my words and in my emotions.  Sometimes I rattle off statistics ("The chances of my daughter developing type 1 are only slightly higher than a non-diabetic mom, while if it were my husband who had diabetes, her chances would be more elevated,"), and sometimes I respond, "No," and roll their question around in my head for a while.

Please don't ask me this question.  It hurts more than all the others.  I can answer, "Can you eat that?" and "Do you have the 'bad diabetes?'" until my voice is hoarse from answering because it's about me, and I can handle me.  But when it comes to my Bird, I don't want to discuss her health.  I don't want to talk about anything that could hurt her.  My head isn't in the sand, but I thought my heart was walled up tight, to the point where I didn't have a visceral reaction to something as simple as a question.

(It's not walled up at all, though.) 

I know why they ask.  I have that Thought, too.  When people ask this question, my knees go weak while my back muscles tense up, bringing my shoulders back and squared off.  "The chances of my daughter getting diabetes are only slightly increased over the chances of anyone else's kid."  

What I want to say is, "I love that child with everything I have and even though I know she's okay and even if she ends up with diabetes, she'll still be okay, I don't want to think about her living with a disease.  Any disease."

(And then, in this fantasy that takes place only in my head, I whisper "And your question sucks," psychotic crazytown, like Daniel Day-Lewis' character in Gangs of New York, and I punch them in the face so hard that the BAM! word cloud pops up, all old-school Batman.)

It's Diabetes Awareness Month, and I want people to be aware that I'm already aware of the fact that being a parent means I worry about things I didn't even know existed as potential panic points until two and a half years ago.  And I want them to be aware that my child, despite being the daughter of a person with a chronic illness, is still my daughter, and it's hard to think about any potential hardship in her life.  We don't want to focus and worry about things that could happen.  Ask me her favorite color.  Or ask about her favorite Thomas the Tank Engine train.  Ask me what ice cream flavor makes her giggle.  Ask me what songs make her dance like a lunatic.  Don't ask me about her health.  Don't make her feel like she's a ticking time bomb. 

We just want to enjoy one another.

Just let me enjoy her.

November 01, 2012

Diabetes Month: T1D For a Day.

It's November 1st, which means Diabetes Month starts TODAY.  Which also means that PR initiatives start pouring into my inbox today (often times starting with "Are you aware that diabetes is a serious, life-threatening disease?" to which I respond, "Do tell?").  But I appreciate any efforts to raise awareness for diabetes, both type 1 and type 2 (and LADA and MODY and gestational - the list gets longer with every decade) because I've been living with type 1 diabetes for twenty-six years.  We have some great treatment options, advocacy program, and advancements, but we can do better.

I wish my nails were that nice.  And that my phone was that clean.  Sadly, I'm 0 for 2.To that end, I wanted to support the Be T1D for a Day initiative from the JDRF because I think it's a really clever, really insightful way to give a non-PWD a glimpse into life as a person with diabetes.  Here's the gist, from the JDRF website:

"When you sign up for the T1D for a Day text challenge, you agree to receive as many as 24 text messages over a 24-hour period that simulate the constant blood sugar testing, insulin injections, and dietary decisions that confront people with T1D."

It sounds like it might not be a big deal or too insightful, but it is.  It's a way for someone without diabetes to have an idea of how pervasive type 1 diabetes is during the course of one day.  From testing blood sugars to calculating insulin doses, and negotiating food options, working in some exercise, making sense of numbers that don't match your goals ... and then all the emotional stuff in between these moments?  That's a lot of diabetes tapping into your day.  This exercise, constructed by the JDRF, brings that message home. Or, as they state on their site, "While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loved ones with T1D take each day."

To sign up for T1D for a Day, text T1D4ADAY to 63566. You will receive a confirmation text that will cycle you through registration.  Or you can click through here to sign up through the web. 

Thanks to everyone who supports PWD every day, by being our friends, loved ones, and family (sometimes all three).  Type 1 diabetes can get a little heavy, and it helps to have so many hands to help lift us up.

October 18, 2012

Timesulin: Informed MDI'ing.

During my short experience back on multiple daily injections (MDI), aka "pump vacation," I made frequent use of the Timesulin pen cap.  This sample was sent to me by John Sjölund, CEO and co-founder of Timesulin, and since I received a few samples, I passed one along to Christopher Angell, in hopes of sharing perspectives from someone who was moonlighting as an MDI'er (me) and someone who is a full-time MDI'er (Christopher). 

For me, the Timesulin pen cap was a fantastic transition tool for me because it helped bridge the information gap.  When I'm using my pump, I have access to information like the amount of insulin on board, the bolus calculator, the ability to micro-dose, etc.  Going from pumping to pens is a tricky transition, because injections don't allow me the ability to fine-tune the way I'm used to.  But this Timesulin pen cap thing helps my brain out, because it provides the basic information of "when did I last bolus?"

That, for a scatterbrained mess like me, is crucial.  I have a tendency to rage bolus when I'm high, and this pen helped me avoid stacking boluses.  I also have a tendency to forget when I last bolused (see aforementioned scatterbrainedness), so the history screen/status screen on my Animas Ping is essential to sanity.  This is where the pen cap comes in, because after being uncapped for 8 seconds (which, according to their research, was the average of how long it took to take a pen injection - we are a fast crew, it seems!), the timer resets, letting you know when you last used the pen.

In my world, the size of the pen/cap didn't register much for me, because it lives in my meter case (a small, but long, makeup bag I bought at Target last year), so it fit fine in there with all of my other supplies (meter, lancets, pump battery, a quarter to change the battery, and spare pen needle tips). 

Christopher also took this pen cap for a test drive, and he was struck initially by the size of the thing (and we'll put his comments in italics, so I don't get tangled):  At first glance, I thought the cap looked comically oversized, as though someone had hit my original cap with a hammer and it had swollen to twice its normal size, or the insulin cap equivalent of the foam novelty hand often seen in football stadiums.  Timesulin (my initial reaction notwithstanding) did a very good job of matching their cap to my Humalog Kwikpen™.  If anything, I would say they did too good a job.  The longer I used it, the more likely I was to simply grab the pen and uncap it, without looking at the timer screen, before remembering that was, in fact, an option.  While I understand the impulse to try to blend it in with existing equipment, a more contrasting/eye-catching design would have kept me more aware of its presence/function, and allowed me to take greater advantage of it.

The timer impacted him, as well, but in a slightly different way: If anything, I would say that Timesulin made me aware of how often I truly forget whether or not I have given an injection.  Not once in the 2+ weeks that I have used it have I used it for that purpose.  That said, it's an important enough piece of information that even needing it and getting it once or twice a year is more than enough to justify the unobtrusive accessory.

What I found myself using it for more than anything (outside of general curiosity about how long I might have gone between injections) was as a timer for showing me how long it had been between bolus and meal.  It was a very helpful reminder to try to pre-bolus for meals I knew were likely to spike me, such as chinese food, as well as a convenient way of tracking when that pre-bolus may have been too "pre" and I ought to consider finding something to pre-empt a pre-meal hypo.  I would leave the pen on the table until my food arrived, so I could keep tabs on the life of my freshly introduced insulin.

Overall, I think this concept is brilliant, in both its simplicity and execution.  Even though I'm back on the pump and have retired my bottle of Levemir back to the fridge until my next MDI dabbling, I still keep the pen cap on my backup pen.  This tool is a powerful, yet straightforward, weapon in my diabetes arsenal. I really liked, and like, having it on hand.



And, for the record, it tracks up to 99 hours and 59 minutes, at which time it sits quietly.  Which makes me uncap it and restart the timer, because I can't help myself.  If you want to check this out for yourself, you can buy one through the Timesulin web store.

October 11, 2012

Scrutiny.

Here.  Read a book up close, if that's your thing."One diet doesn’t rule us.  One meter doesn’t rule us.  One doctor doesn’t rule us.  The diversity in treatment options and methodologies is amazing.  And with so many variables, there’s still the common thread that with even the same arsenal of diabetes management tools and strategies, two people can have entirely different results from the same therapies.   In the diabetes community, there isn’t one voice, or one perspective, or one way of doing things that dictates the actions of a community. 

Diabetes is as diverse as the people who have it.  There are so many voices because there need to be so many voices."

New column up at Animas today, and it's about Scrutiny

September 06, 2012

Twice.

"I have family members with diabetes, but they don't take care of themselves," he said.  "They eat whatever they want, and they never test their blood sugar, and they never go to the doctor."

The unspoken thought, capping the end of that sentence, felt like, "So they deserve whatever they get."  

I had a hard time keeping my mouth shut, even though I was at this dinner with people I didn't really know, and who didn't really know me.  They were aware of the fact that I have type 1 diabetes, but it wasn't a big discussion point throughout the day, so I think it was a little snippet of information that fell by the wayside by the time dinner was served.

"But how do you know that?" I blurted out.

He stopped and looked at me.  "What do you mean?"

"How do you know they don't take care of themselves?  Or go to the doctor?  Or test their blood sugar?" 

"Because they don't.  I never see it.  Not even at holidays."  

I didn't want to be That Person. I had zero desire to be the one who raises her voice at dinner table with strangers, preaching on about the misconceptions society has about diabetes, and about all the different kinds of people who live with it, blah blah blah.  I wanted to have dinner, and hang out, and have a good time.

But I don't like the "yeah, but the majority of people with diabetes DON'T take care of themselves" argument, because I take care of myself.  I try, and I do.  And I know so many people who take care of themselves the best they can, and so many who, despite dedicated efforts, still run a rough road.  Perfection isn't achievable, and guilt is inescapable.  Chris encourages me to not take these kinds of discussions personally, because he hates to see my feelings scraped, but it's hard not to take it personally.  I have diabetes.  They're talking about diabetes.  Even when I try, it's hard to keep my viewpoints objective.

"Did you see me test my blood sugar at the table a few minutes ago?"

"You did?"

"Yeah.  I have tested twice, actually, at this table.  While you sat there.  And that orange juice I had before?  Which might not have seemed like the 'right' food for a diabetic?  I was treating a low blood sugar.  You don't always see what we do to take care of ourselves.  But there's a lot that we do. I swear."  I smiled at him, but inside I was begging, pleading for him to see me as a person who, however my life wrings out, didn't "deserve" a damn thing.

There was an awkward silence.

"Twice?  You tested twice?"

"Yeah."

This time, he smiled warmly, erasing all awkwardness.  "Maybe they do stuff I don't see, too." 

I smiled back, wanting to jump across the table and hug him. 

"I hope so."

August 10, 2012

Wrong Diabetes Diagnosis.

On Monday, the Wall Street Journal (look at me, linking to a real publication instead of a Strongbad email) had an article about doctors misdiagnosing type 1 diabetes in adults.  I posted a link to the article, called "Wrong Call:  The Trouble Diagnosing Diabetes," on my Facebook page and received several comments from people who went through a similar misdiagnosis.  They have offered to share some of their story here, and I'm hopeful that their words will help someone else in a similar situation.

The Initial Symptoms.
Jessica, diagnosed at age 26, was already familiar with type 1 diabetes.  "My diagnosis story actually begins with my husband, diagnosed with type 1 on his 21st birthday.  Fortunately he was diagnosed correctly and quickly, and we were able to get him all of the help he needed."  She described hitting a wall of thirst and exhaustion that set in when her son was nine months old.  "These symptoms continued for about a week, and mostly only bothered me at night.  During the day, although I was tired, I wasn't going to the bathroom constantly or super thirsty."

Lindsay had a similar experience, just before she turned 27.  "I was just a few weeks sPinging and ponging between proper diagnoses.  hy of my 27th birthday.  I had been sick a long time with weight loss, hair loss, you name it.  I ended up with intense upper GI pain that couldn't be ignored, so my mom took me to the ER where the symptoms were investigated with an ultrasound, blood work, etc.  The doctor came back to report that I had 'viral gastritis, likely due to your increased blood glucose level, which is 277.  Now, because of your age, you'll be considered a type 2.'  Love that one, eh?? My mom and I sat stunned; my dad had JUST been diagnosed with type 2 three weeks before."

Sarah also sang the same symptoms tune:  "The morning of February 22, 2007 I woke up and with diabetes without a doubt in my mind. I had nearly every symptom there was - constant thirst, frequent urination, fatigue. I had the works and I knew it.  I had a yearly physical coming up about three weeks after this and decided to wait until then to bring it up with the doctor. I realize now that this was foolish of me and that I really should have gone in right away!"

The Wrong Diagnosis.
Sarah was heading off to Europe the day after her initial type 2 diagnosis, armed with a bottle of metformin and instructions to see a doctor immediately if she felt at all ill.  "When I returned from Europe and for nearly five months, I had appointments every other week to monitor the progress of my BG readings and to adjust medications that ranged from Metformin to Glypizide to Byetta. By the time my last appointment in July had come around, I'd lost 45 pounds, the Byetta had caused my boss to think I was going to vomit every time I ate (even though he knew the side effects only included nausea, not actual throwing up) and for me to feel even worse than I had the 3 months before I began taking it. I was done. If I had to be a T2 Diabetic on insulin, I would be. But I was done feeling sick; being sick. My doctor offered to write me a referral, in which I quickly took him up on - even providing him with the name of an endocrinologist during that very appointment.  He gave me a prescription for insulin and a low dosage to start me off until I could get in to see the new doctor."

"We were given the name of an endocrinologist, a prescription for Amaryl and a prescription for a blood glucose meter," said Lindsay, recalling her initial diagnosis and treatment.  "We were told that once my blood sugars were under control, the gastric pain would go away.  I remember so clearly the nurse making sure I knew that as a diabetic my 'days wearing open toed shoes were no longer.'  No real information on what diabetes was, no instruction on how to use the meter, no information at all.  We left and I felt totally and completely lost. I was still so sick from the upper GI pain that I was relatively accepting of my fate because I was under the impression it would get better fast."

Jessica, however, had her husband's type 1 tools at home to make a quick check:  "One day, we went to my moms for dinner ... a night I now refer to as my "Last Supper."  It was my favorite meal - pot roast, mashed potatoes, loads of gravy, corn, bread, and Pepsi.  Immediately after dinner, I was going to the bathroom every 15 minutes.  I laughed about it, was a little concerned, but rationalized that I had drank a lot of water and Pepsi that day.  My mom looked at me and said sarcastically, "You should check your blood sugar!"  And it hit me.  My husband wasn't with us that night, but my sister drove me home, and we pulled out the meter:  HI.  'Bullshit,' I thought.  Check again:  HI."  She was off the the ER and sent home with a prescription of metformin, after minimal lab work.

Tipping Point, and Resolution.
That endocrinologist appointment was a true tipping point for Sarah.  "I remember my first [insulin] injection like it was yesterday. It wasn't much, but I remember feeling better within the hour. It was the best I'd felt in months - not only physically but emotionally, too. My fatigue and over all demeanor caused a lot of emotional angst that summer.  About a week later, during our first appointment with the endocrinologist, we [my parents and I] learned that I was a type 1 diabetic. She taught us about insulin to carb ratios, how to calculate them, when to take my injections for food and when to correct a high blood glucose reading, and what the difference was between Lantus and Humolog. She told me what was happening to my body and for the first time in months I understood. I was grateful for that day."

Lindsay also found quick, but bittersweet resolution at the endo's office.  "One week after visiting the ER, I met with my new endocrinologist who would be the first to tell me 'Um, no.  The doctors at the ER were shockingly and sadly mistaken.  Your A1c was 15.3 and you are, by every definition a classic case of a type 1, soon-to-be insulin dependent diabetic.  Your lab results are more than clear in that.'  I started SOBBING.  I had just accepted my fate as a type 2 who would have to watch my diet, maybe exercise some more and take medication.  I could handle that.  But shots???  UGH - no freaking way.  Looking back on it now, I'm baffled at how it was SO important to make sure I knew I shouldn't ever get pedicures or wear sandals again, but the meter?  The safe blood glucose ranges?  Ways to treat highs & lows?  Nah.  That wasn't important, I guess."

"I went to an endocrinologist.  I was begging for answers, telling her my story and asked if she thought I would ever be able to stop taking insulin," said Jessica, talking about her first visit to an endo. "She said, 'You know that you have Type 1, right?'  I cried, but more from relief that I finally had an answer.  My latest results had also revealed a hyperthyroid problem and she began to treat me for both.  I understand that I was extremely overweight and that's a red flag for a T2 diagnosis.  But it is terrifying to think about what would have happened to me had my husband not had a stockpile of insulin, test strips and needles for me to use.  We trust our doctors - and when we are diagnosed we do what they tell us to because we are scared, they know more than us at that point, and we want to feel better."

I only know what I know:  diagnosed as a kid with type 1 diabetes, never going through the pain and heartache of a misdiagnosis.  But after reading the WSJ article, and the stories from these women here, it breaks my heart to think of someone dealing with diabetes, but not finding answers, or relief.  All three women were misdiagnosed with type 2 diabetes and given oral medication, when they actually had type 1 diabetes, and needed insulin.

Jessica sums it up for me with this:  "I knew of only one girl with T1 when I was growing up.  I've met a few more as an adult.  What scares the hell out of me is the number of adult T1's I've met who are diagnosed in adulthood.  It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults."

June 04, 2012

Insulin Pump on the Beach.

"Oh, it's like what Cindy has!  That's what Cindy has!"

The lady was about twenty feet away from me, stage-whispering to her husband. 

"Is that the pump?  The insulin pump thing?"  her husband asked, gesturing toward me.  

I lifted the beach blanket by its corners so it would spread out nice and flat.  "It is an insulin pump," I said to them, waving, unaware until that moment how obvious my insulin pump was, clipped to the bottom of my bathing suit, the tubing tucked in kind of haphazardly; it was a diabetes Bat Signal.  "It's nice to meet you!" 

The woman came over, her hands fluttering and her mouth talking and smiling all at once.  She was so excited ...

"... to see a real insulin pump!  My daughter went on one a few years ago, but I've never seen anyone else with one.  And at the beach!!  She's going to love hearing this. Your pump looks different from hers - is it?"

(I loved that she automatically assumed I knew what kind of pump her daughter was on, as if there was a community of people with diabetes who are in constant contact with one another and comparing notes ... wait a second ...)

"Mine is an Animas pump.  Is hers Animas or Medtronic?  Does it have tubing?"

"Yes, it has the wires.  Hers is the Medtronic one.  She really likes it.  How long have you had diabetes?"

"Twenty-five years.  How about your daughter?"

"About twenty years.  She's 31.  She's trying to lose weight and be in better control.  I don't know half of what she does, but I know she's always trying to do better."  The corners of her mouth tugged into a brave smile.  "She doesn't know I worry but I worry all the time."

"My mom does, too."  My mother and Birdy were a few yards away, building a sand castle.  "She worries.  But she knows I'll be okay."

Beach blanket Birdy"Is that little one your daughter?"

"Yes.  She's two."

The woman smiled.  "My daughter would like to have a baby.  That's part of why she went on a pump.  You know."

Birdy came running toward me, her ponytail bouncing and covered in sand.  "Ocean, Mama!!"  The bucket of sand in her hand spilled as she lifted her arms excitedly.  "Sand!  I has sand!"

I gave the woman a big grin as my daughter tornado toddled up the beach, her arms outstretched. 

"I do know."

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.

February 13, 2012

Diabetic Barbie.

Barbie was a staple toy in my childhood, along with my Cabbage Patch dolls and Rainbow Brite.  We had Barbies that were veterinarians, doctors, airplane pilots, business women, and rock stars.  (For the record, I still know every word to the Barbie and the Rockers theme song.  We also had their tour bus, which my dad had to put together one Christmas Eve, probably with blood, sweat, and swears.)  But I never saw a Barbie with diabetes.  (Hell, I never even saw a Barbie with realistic physical dimensions, but that's an entirely different post.)

In the last few weeks, there has been a lot of discussion about a "beautiful and bald Barbie" being created to "to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother's hair loss from chemo."  Almost 150,000 people have "Liked" that Facebook page. 

After seeing this public outcry, Amy Ermel was moved to respond to her own daughter's question of "Why isn't there a Barbie with diabetes?"  And today she's talking about her desire for a "diabetic Barbie" for her little girl.

So awesome: Diabetic Barbie
Amy's "Diabetic Barbie" prototype

Kerri:  Amy, can you please introduce yourself to everyone, and let them know what your connection to diabetes is?

Amy:  Hi there! My name is Amy Ermel and I have been a "D-Mom" for over three years now. My seven year old daughter (who will be turning eight on Valentine's Day, actually!) was diagnosed with type 1 diabetes at the age of four.
 
Kerri:  Can you tell me a little bit about your daughter's diagnosis, and how she (and you) have been handling things so far?

Amy:  Emma was diagnosed on June 26, 2008 ... just a couple of months before she was to start junior kindergarten. She had been showing all of the classic symptoms, but I really had no idea. I thought that perhaps she had a bladder infection, so I took her to the doctor and was floored to find out the real diagnosis [of type 1 diabetes]. What a ride it has been since that day! Emma started off on injections and this past May she finally decided she was ready to pump. She chose the Animas Ping, and we have loved it since day one. Pumping has really given us back our freedom and it feels like we are able to live our lives about as close to how things were before diagnosis as possible.
 
Kerri:  What planted the seed for Diabetic Barbie, and why do you think it's important for kids like your daughter?

Amy:  Emma had gone to school a couple of weeks ago and had heard from friends that there was a bald Barbie doll coming out soon for cancer awareness. She came home that day and asked me why there wasn't one for diabetes? I feel that many children diagnosed with diabetes are of prime "Barbie playing" age. If they were able to sit down and play Barbies and see her with a pump, or a blood glucose meter, a lancet ... they would feel a sense of normalcy. They would feel that connection. They could play with a doll that was just like they were and it would bring a smile to their faces. The same rings true for siblings of diabetics, I believe. They could play with a Barbie doll that has diabetes just like their brother or sister does ,and it would make them proud! It would definitely be a huge self-esteem boost for our type 1 kiddos!
 
Kerri:  I saw that you have a Facebook page and are looking to grab the attention of Mattel.  What's your plan, moving forward?

Amy:  We have created a Facebook page called "Diabetic Barbie" and are trying to spread the word. We would like to have 5000 "likes" to our page so we can bring this along with a petition to Mattel and make them see that the DOC are a family.  We stand up for our kids and we want the best for them. I want to put diabetes in the spotlight and have our kids shine like the true heroes they are!

Kerri:  How can people in the DOC help you raise awareness of Diabetic Barbie?

Amy:  The DOC has shown tremendous support so far and Emma and I are truly grateful! You all are making my job as a mommy very easy. You are helping me to show Emma that it is okay to dream big ... even when you are seven years old! There are people out there willing to help you and support you! The DOC can help by spreading the word, sharing a link to our Diabetic Barbie Facebook page and asking their friends to "Like" it. Share and tell everyone you know and let's make this happen together!!

*   *   *

You can read Amy's blog at Laughing at Diabetes and, of course, visit the Diabetic Barbie Facebook page.  A little awareness and advocacy can go a long way in making a kid with diabetes feel empowered.

January 31, 2012

What We Document.: Solving for "Why."

Dexcom graphs that look like gigantic Ms and Ws?  I see those all the time.  But when I sift through the pile of photos I have on my computer (in the folder marked "Diabetes Crap;" I can write real good, Ma), the Dexcom graphs I see are all pretty.  Nice, straight lines or soft bell curves, without the sharp angles.

I know these pictures aren't representative of how my diabetes is controlled, on a day-to-day basis.  There are way more times that I'm muttering "You stupid jerkface pancreas ..." than moments when I want to whip out my camera and take a snapshot for posterity.  But I like having these happier photos outnumber the ones that make me grimace, because when I need a lift, it's nice to have a catalog to draw from.  This is what I chose to document, visually, because it inspires me to earn this photo opportunity again, you know?


I chose to document this, because it made me feel good.

May will mark the end of my seventh year blogging at SUM (and starts the eighth year - jeepers), and when I look back through the archives, I'm weirdly proud to see a diversity in what's documented.  There are some really high moments (high as in "emotionally high," not "OMG, how did that 312 mg/dL sneak in there?" high), like when the Bird was born or when Chris and I got married.  And then there are low moments, like trying to be a strong advocate for PWDs while going through burnout, or when blue candles start peppering our Facebook feeds

And then I look at other people's blogs (holy crap, there are a lot of us!), and see that they're chronicling the good, bad, and decidedly 'eh' of life with diabetes.  The real stuff.  It's crazy how honest we are with the Internet.  I see people writing about things online that they might not be sharing with their doctor.  Or their coworkers.  Or their very closest friends. But it's shared here, and there's a power to sharing our stories.

I'm amazed at what we chose to document, as a community.  From celebrations of a no-hitter to scoring a quality pair of blue shoes, to difficult moments of feeling burnt out and admitting that we're struggling, what we document shows our strength as a community.  We're not afraid to share the stuff that really scares us, or empowers us, and we have one another to mark different milestones with.  What we share, as a global community, could help any one of us improve our health, emotionally and physically. 

Diabetes isn't a perfect math where you can just solve for X.  Usually, we're solving for "why."  And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.

November 22, 2011

World Diabetes Day Postcard Exchange: Romania!

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

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

I think she has very lovely handwriting.  :) 

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

November 17, 2011

Giving You a Reason to Believe.

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

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

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

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

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

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

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

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


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

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

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

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

November 11, 2011

Guest Post: Helping Scott.

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

*   *   *

Scott and Arden

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

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

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

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

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

So here’s the pitch:

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

Thank you so much for taking this time with me!

- Scott Benner - @ArdensDay

*   *   *

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

November 10, 2011

Today.

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

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

*   *   *

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

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

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

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

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

Dead-in-bed is the exception.

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

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

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

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

November 04, 2011

Who Are the People in Your Neighborhood?

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

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

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

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

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

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

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

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

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

Now I want to talk about baseball.

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

October 26, 2011

Getting Ready for Diabetes Month.

Diabetes Month is fast approaching, and I've been thinking about this community - our community - and how much it means to me. I was reminded of a poem I wrote back in 2007 about the impact this community has had on my own health and awareness, and I wanted to share it here, because you guys are what matters.  

What Matters (originally published in November 2007):

I live every day with a pump at my hip
A meter close by, and a smile on my lips.

So many moments there are in my day
When it seems that my pancreas gets in the way,
Be it exercise, cooking or sleeping or driving,
I’m constantly checking to keep myself thriving.
And while my fiancé, my family and friends
Support me and hold me and love to no end,
I started to blog because I felt alone -
The only diabetic as far as I'd ever known.
Needing to find others who understood
How a number was scary, how a food could be good.
How I worried my eyes were damaged from cake.
I worried my worries were too little, too late.
How I worried my feelings were strange and unique
And that my diabetes made me some kind of freak.

I wrote my first post, took a great gasp of air,
Hit the big publish button and from out of thin air
My words were set loose to the great world wide web
And I wanted and hoped to hear what others said.
Within just a week I had found several others.
Type 1’s and type 2’s and some fathers and mothers.
These people, they knew, and I felt less alone.
I feared less my future and all the unknowns.
The blogging took off and it chronicled things
Like my job and my friends and my engagement ring.
I poured out my feelings and dealt with my fears,
I let loose my laughter and reigned in my tears.
I felt so much stronger with all the support
Of the people who knew how my body fell short.

When I peel back the layers to what matters most,
It's not about how many readers I host.
It's not about statcounts and not about feeds.
It's not about fame and it’s not about greed.
It’s not about comments or big recognition,
It’s about all the challenges of this condition.
This community knows me where I hurt the most.
It makes me feel normal, supported, and close.

I'm thankful for every day towards good health.
I’m thankful I’m not doing this by myself.
Endless thanks to the people who read these brave writers
And for making the burden we carry much lighter.

 

October 19, 2011

Guest Post: The College Diabetes Network.

ChristinaWhat would have made college easier for me, diabetes-wise?  Having the diabetes online community.  Unfortunately, at that point in my life, I didn't really know anyone else who had diabetes, so I was a health soloist instead of part of this incredible, chronic choir.  

Christina Roth, founder of the College Diabetes Network, has created what I wish had been there for me.  And today, she's taking some time to share her story, and to encourage others to get connected.

SUM: What gave you the idea to start CDN? 

Christina: Having been diagnosed at the age of 14, in the midst of those rebellious teenage years, I wanted nothing to do with diabetes in high school. It wasn’t until college that I felt ready to connect with other people with diabetes, but when I reached out to other students I found that there was no way to connect with anyone. I had met a nurse practitioner at our university health services who had had diabetes for 30 years before getting a pancreatic transplant. Before meeting her I had never talked with another diabetic, I had never experienced anything like it, it was freeing. We started talking about how great it would be to connect all of the diabetics on campus, as she saw several of them as patients and thought that they would also benefit from connecting. At the time, I had also heard about a group that a few students at Harvard had tried to start several years before, but found all of the links and information on their webpage to be out of date.

So we decided to start a group on campus, but in order to get information out about the group, I realized we needed a website that we could refer people to. Over my winter break that year I met with a webdesigner and put together the website. All of the information was specific to UMass, as at that point the thought of this being any more than a UMass student group had never crossed my mind, nor would I have ever believed it to be possible.

We were able to get information out about CDN by referring people to the website and had our first meeting at the beginning of the Spring semester. We had booked the room for about 1-1 ½ hours and ended up all staying and talking for over 3.

When I started receiving emails asking how students could start similar groups on their campuses, I decided that we needed to make this information available, and of course expand the website so that each school would have a page, as it was such a key part of our success at UMass. From there everything just kind of snowballed into what it is now. We added several new chapters, completely redesigned and relaunched the website, and got our 501c3 status from the IRS. I’m not quite sure how it happened…but CDN has become my full-time job (in addition to my real-life full time job…), as well as my passion. Although we didn’t start out to create a national organization for students, I feel that the grassroots way in which we have come into being is what makes us so successful. CDN knows the support and resources that are needed by students because the organization was created by students and is run by students.

There are many people, who without their expertise and willingness to help and donate their time, CDN would not exist (and I would have lost my mind a long time ago!).

Click here to visit the CDN website.

SUM:  Do you plan on extending to more schools? 

Christina:  We are always looking to expand and create chapters at new schools, or to register existing student groups. We currently have about 20 chapters, all randomly located throughout the country. CDN provides the resources for these groups to get started and to succeed, but the groups themselves are run by students on campus and are based around the needs and desires of their members. Through my own experience with CDN at UMass, it is the peer support and the friendships that the group fosters that empowers and motivates people.

SUM:  I see you have a “students” section as well as a “parents” section which is an incredibly important aspect of PWD going away to college. Do you get a lot of parent activity with CDN?  Do the parents ask questions that you try and find resources/answers for?

Continue reading "Guest Post: The College Diabetes Network." »

October 18, 2011

Get Your Blue On.

November is Diabetes Month, and Cherise is asking us to rock blue on Fridays. 

From the Blue Fridays Facebook page:  "Blue Fridays is an initiative to bring attention to World Diabetes Day, and to advocate and bring awareness for diabetes and the people living with it. Diabetes is more than a national issue; it's a world epidemic. This year, I want to rally the diabetes community to celebrate World Diabetes Day and Diabetes Awareness Month by asking people to wear blue every Friday during the Month of November and on World Diabetes Day (November 14). Please help spread the word"

Need a little visual encouragement?  Got it:

WEAR BLUE!!

October 13, 2011

Transforming Diabetes: Hanging Out with Heather.

:)Heather Clute, one of the hosts of the Transforming Diabetes podcast, describes herself as "living well (but not perfectly) with type 1 diabetes since 1997."  I love that.  I love that she recognizes the impossibility of perfection, but appreciates the fact that life can still be awesome after a diabetes diagnosis. 

And I also really respect the mission of their organization:  "Transforming Diabetes invites listeners who have diabetes, love someone with diabetes, or simply care about the issues around this epidemic to join in our community of inspiration.  We are creating connections around living well in spite of – or even because of – diabetes.  We hope to turn the 'S-Word' of scare in diabetes into great self-care, self-responsibility, and personal empowerment.  Let’s turn the table on those scary statistics, and take the diagnosis from challenge to opportunity!"

And I'm honored to have been a guest on the Transforming Diabetes podcast earlier this week, talking about the Diabetes Sisters conference, how diabetes meet-ups are like "grown up diabetes camp," and the power of positive influences in the diabetes community.  You can check out the podcast by clicking this link (which will take you to their blog) or by downloading the streaming podcast here

(I apologize for my excessive giggling.  I don't know what got into me.)

September 29, 2011

Diabetes Terms of Endearment eBook!

First off, you guys, as an online collective, RULE because without your input and perspectives and laughter, this compilation wouldn't be possible.  So THANK YOU for being open to this silly idea, and for sharing your own diabetes terms of endearment over the last few years.

Secondly, Meredith is a badass designer, and her fast hands and sparkly shoes made a woefully plain Word document into something right pretty.

Thirdly, Kim Vlasnik knows her way around a unicorn (WHAT?), and her awesome skills brought a little glitter and visual stimulation to this project.  

And fourthishly, Abby Bayer is a patient and tolerant editorial assistant who helped me compile and wordsmith these terms.  Without her, I'd be sunk.

So, with their help, and yours, we finally have the compiled Diabetes Terms of Endearment, as a pretty little eBook with the terms and jargon that only PWD and those who care for them can really understand (and now you can download it and laugh at it.  Or color.  Or show to your friends when you're all "no-hitter" and they're all "What does that mean?").


This project is constantly growing and changing, so be on the lookout for new editions as our community moves forward.  For now, can we please focus on the fact that the unicorn is on a Cakebook Pro???

September 26, 2011

We're More Than Our Numbers.

I'm working on recapping the ePatient Connections conference from last week, but what resonated most for me was hearing patients reiterate "We're more than our diseases!"  And it struck me that I'm constantly judging myself on those tougher diabetes moments, and refusing to celebrate the successes.  I need a little more celebration. 

I know my cumulative health is what doctor's pay attention to, but sometimes I just want to sing from the rooftops about that nice, round 100 mg/dL.  Blood sugars that are out of range get all the attention; it's time for me to feel good about the wheels that don't squeak.  ;)

September 16, 2011

30 Things About My Invisible Illness: 2011.

This week is Invisible Illness Week, and type 1 diabetes is definitely in that "invisible" category.  I wanted to participate in this week's events, but a little Birdy and a little eyeball set me back a bit, productivity-wise.  So I'm defaulting to my favorite blog fodder:  a meme

Back in 2009, I did the 30 Things About My Invisible Illness meme, and I'm curious to see how much has changed in the last two years.  Bring out your memes!

1. The illness I live with is: type 1 diabetes
2. I was diagnosed with it in the year:  1986
3. But I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: ... this is a trick question. I don't remember the "before" diabetes moments in my life, so I've been adjusting my schedule, decisions ... life to diabetes for the last 25 years.
5. Most people assume: that I did something to cause it.  Or that it's "no big deal."  Or that after my pregnancy was over, my diabetes would go away.  Or that I "can't eat that." Or that the insulin pump and the CGM automatically regulate my blood sugars, leaving me sitting by the pool and sipping mango margaritas all day long while my blood sugars roll between 90 - 115 mg/dL.  ( 
6. The hardest part about mornings are: when there isn't time to make coffee.  (What, it's not all diabetes!)
7. My favorite medical TV show is: Glee?
8. A gadget I couldn’t live without is: Toss up between my insulin pump, Dexcom, and Macbook.  Those three things are my best inanimate friends all the livelong day.
9. The hardest part about nights are: being a little anxious that I'll have a blood sugar issue that makes the morning disappear.
10. Each day I take 1 pill & a billion vitamins.  And I infuse insulin 24/7.  (The meme said "no comments" here, but diabetes maintenance drugs are more than worth mentioning.)
11. Regarding alternative treatments I: believe that holistic health and and nurturing the emotional self is just as crucial as daily insulin doses.  But I don't have other alternatives to insulin.  It's kind of the missing link.
12. If I had to choose between an invisible illness or visible I would choose:  While I am sometimes frustrated that PWD (people with diabetes) don't "look worth curing," I would much, much rather feel good and look healthy than to have tangible, outward symptoms of my medical condition.  I appreciate being incognito with my diabetes as much as I can. 
13. Regarding working and career:  I used to just "work."  Now I have a career, and a passion, and I credit that to the influence of my diabetes.  Can't lie.
14. People would be surprised to know: that I don't talk about diabetes all the time to my real life friends.  Actually, I hardly bring it up.
15. The hardest thing to accept about my new reality has been: that I don't remember the "old reality."  I'm a little moody about that, sometimes.
16. Something I never thought I could do with my illness that I did was: have a baby.  (Boo.  Yeah.)
17. The commercials about my illness: are just now starting to resonate for me.  Prior to the new class of commercials that speak to the type 1 community, I just couldn't get into that oatmeal guy from Cocoon.
18. Something I really miss doing since I was diagnosed is: making my own insulin.
19. It was really hard to have to give up: ... hmm.  I don't think I've given anything up because of diabetes.  To the contrary - I think I've worked harder and earned more (emotionally) due to this mess.  :)
20. A new hobby I have taken up since my diagnosis is: caring about my health.
21. If I could have one day of feeling normal again I would: just relax.  And revisit the mango margarita thing.
22. My illness has taught me: that "control" is a state of mind. 
23. Want to know a secret? One thing people say that gets under my skin is: "You can't eat/do/think/be that."  Hey, want to know a secret?  I CAN.
24. But I love it when people: love me for me, and not because of or despite diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: Don't eat fructose snow?
26. When someone is diagnosed I’d like to tell them: that they aren't alone.  And there is a very good, very full life, even after diagnosis.
27. Something that has surprised me about living with an illness is: that there are a lot of other people who are living with this illness, too.
28. The nicest thing someone did for me when I wasn’t feeling well was: not say, "What did you do?"  As if I caused the whole not-feeling-well moment.
29. I’m involved with Invisible Illness Week because: if we're not involved, our disease remains invisible.
30. The fact that you read this list makes me feel: like you have an appreciation for life with diabetes, and that a small part of your brain is thinking about doing this meme, too.  (DO IT!)


August 10, 2011

Diabetes Feeties.

Old photo, but those feet remain pretty adorable.  Except when she steps in the cat food bowls.  Less adorable then.(That has to be one of the goofiest subject lines I've had in the last few ... evers.)

A few days ago, I received an email from a fellow T1 PWD who has been living with diabetes several decades ... but hadn't ever had a pedicure in her whole life.

And I replied:  "Neither have I."

There were several crutons of information thrown at my family and I upon my diagnosis almost 25 years ago ("Don't even think about getting pregnant" and "Pedicures will cause massive infections so none of that, either" being repeat offense croutons), and getting a manicure or a pedicure was always marked as a no-way back in the day.  However, times are doing their "changin'" thing

From what I've been told, the risk is a possible infection.  With all that filing and scraping and whatever else they do while they grapple with your toes, there's a chance of a foot wound.  And then an infection.  And all hell can break loose.

Or so the rumors go.

Personally, I've never cared about a manicure of any kind.  I don't know if there is a manicure "type," but if there is, I'm not that girl.  I don't like nail polish on my fingernails.  I don't like nails any longer than my nailbed.  I'm a writer, the mother of a young child, and I do a lot of housework, so my hands aren't for "show."  They're for work, and I beat them senseless on a daily basis.  

As far as a pedicure goes, I paint my toenails all the time.  (Right now, they're a lovely rose color.)  But I do it myself, and I file my nails with a basic emery board.  I have one of those As Seen On TV! PedEggs and I use it when the hot beach sand and my flip flops take their toll on my heels.  But for the most part, my beauty regimen from the ankles down is simple.  So long as my feet look nice, I'm happy.

Because secretly (shhhh, don't tell anyone, okay?), I'm a little scared of a pedicure.  It's on that BIG LIST of things PWD ARE NEVER TO DO and it's always highlighted in the scary chapters of diabetes books.  But is that fear legit?  Are nail salons brimming with germs and grossness, and do the nail technicians come at you with giant buzzsaws o' destruction? Or is it a judgment call that people with diabetes need to make on their own?

Has anyone with diabetes had a pedicure and survived to tell the tale?  What are the dos and OMG-don'ts of getting your mani-pedi on?  (And be honest:  does it tickle as much as I think it does?)

August 03, 2011

Being an Adult at Children With Diabetes.

In the years I've attended CWD's Friends for Life conference, I always came away with this appreciation for what the conference provides for kids with diabetes, and their parents.  Kids - a whole bunch of them - running amuck and clad in green bracelets with pump tubing flapping from underneath their t-shirts ... it's a place where these families hopefully feel normal, and safe, and understood. 

But I'm not a kid with diabetes.  I'm an adult.  (I checked, and it's true: adult.)  I always felt welcomed at past FFL conferences, but people constantly checked for the kid at my side, because the "child with diabetes" surely couldn't be me.  (And then there was that time that the registration lady thought Sara(aah) was my child with diabetes, wherein my head exploded.)

Growing up with diabetes isn't hard.  It isn't easy.  I can't assign adjectives to it because it's all I've ever known, so growing up with diabetes is exactly synonymous to "just plain growing up."  My friends didn't have to take injections or chase NPH peaks, but we were in the same classes and rode the same bus and went on the same field trips, so we were "the same."  The difference, at that point in my life, was in what my parents had to do. 

Adulthood with diabetes is challenging, sometimes.  I had the support of my parents and my PWD friends at Clara Barton Camp when i was growing up, but once I was spit out into the real, grown-up world, things got more complicated.  I was on my own, following my own path, but I needed to bring along this bit of pancreatic baggage on the journey.  Even with my parents, and my friends, and my significant others along the way, I still had that nagging feeling of loneliness.

Except there are those moments when I'm surrounded by "my own kind."  And those moments are incredible.

This past summer at Friends for Life, there were a lot of us.  A whole pile of adults with type 1, found in sessions together, and strolling through the exhibit hall together, and corralled around a table into the wee hours of the morning; talking and testing and BEEEEEEEP!ing and despite our difference in opinion and background, we are all "the same."

We felt normal. And safe.  And understood.

It feel so good to talk about depression.  It felt so good to talk about the stress and guilt of aiming for, but rarely reaching, those goals set by healthcare professionals.  Even though I couldn't stop crying, it felt good to talk about parenting with type 1.  When someone's pump or CGM beeped, it felt good that fifteen different people reached for their pockets at once (only to realize it was - gasp! - just a cell phone).  Empowerment comes in many forms, and at the Friends for Life conference, for me, it came in the form of my fellow grown ups with type 1.  They are doing this, and I can do this, too.

Children with diabetes grow up. That's the point, right? - to have your child grow up happy and healthy and safe.  Children with diabetes become adults with diabetes.  There are already discussions in place about what adults with type 1 want to hear about next year.  Adults with diabetes finally have a place to call home. 

Thank you, CWD, for not letting your name limit your reach.

The Adults with Type 1 MeetUp at FFL.  Boo yeah!!

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.  

June 29, 2011

Medtronic: You Need to Call These People.

After Abby wrote about her diabetes-themed tattoo, there were a lot of comments from people either yaying or naying the idea of a tattoo.  I received a few emails with some photos, but the BEST photo I've seen so far is from a mom in Quebec, Canada.  Camille is the mom of a kid with diabetes, and she and her husband got inked in solidarity for their son. 

From Camille's email:  "My hubby and I both got inked last October in support of our four years old son Jacob who was diagnosed [in] January 2010. He started pumping in August 2010. One day he said to me, ''Mom, am I the only one in the world who has a pump?'' I knew he felt alone on his diabetes planet so we decided to join him! I told him that we too would get pumps, that T1 is part of who we are and that the love we share is way stronger than D!"

Incredible ink.  Incredible!
Two dedicated parents, and one cute kid with a great smile.

If that's not the most badass advertising Medtronic will ever get, I don't know what is.

June 20, 2011

Guest Post: What is a Diabetes Superhero?

If you don't know Captain Glucose and Meter Boy, you are about to have your animated world rocked.  This dynamic duo, aka Bill Kirchenbauer (Captain Glucose) and Brad Slaight (Meter Boy), are tireless advocates for the diabetes online community. They rap.  They advocate for why glucose meters matter.  And today, they're premiering their new PSA here!

*   *   *

There are many important questions in the world today, like: Will there ever be peace in the Middle East? How will America pay off the deficit? What the heck is that thing on Donald Trump's head? We have no answers for any of those, but we can answer the question we are asked the most often: What is a diabetes superhero?
 
Years ago when we created the characters Captain Glucose and Meter Boy: The Diabetes Duo, we patterned them after iconic do-gooders like Batman and Robin, The Incredibles, and other non pancreas challenged comic book superheroes. We both have diabetes and being in the entertainment industry we felt that we could best contribute to diabetes awareness by using our creative talents. We came up with a TV pilot to star in but our agent said no one was interested in a sitcom about diabetes called "$#*! My Meter Says" so we decided to make a short humorous PSA (public service announcement) instead. We believe that basic diabetes information is more accessible if it's presented in an entertaining manner. At first we played the characters as live-action real people and we dressed up in handmade costumes, which really made our friends and family question our sanity. But we have since changed them to animated characters with special powers. We did this for two reasons: 1) animated characters have more of a visual impact, and 2) when you're a cartoon you never age or put on weight! 
 
Since first creating Captain Glucose and Meter Boy, we have come to realize that there already exists many real life diabetes superheroes. They can be found in the diabetes online community, or more acronymically appropriate, the D.O.C. They don't wear tights (good thing because those can really chafe) but they are on a similar mission to share their knowledge and help others. They are not in a lab looking for a way to cure "mouseabetes." These real life diabetes superheroes are at their computers spreading the word, writing blogs, supporting those in need, representing all of us at conferences, and fighting the good fight day in and day out. It is a long list of names that is growing faster than diabetes itself and they work tirelessly to help others without ever asking anything in return. Theses D-heroes are making a difference in the lives of many.
 
Dr. Seuss said in The Lorax, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." (He's good, but probably didn't write any stories about our disease because there aren't enough words that rhyme with diabetes.) His touching poetic line applies to the many people in the diabetes online community we've met who do care a whole awful lot. They are willing to share their knowledge, experience, successes, failures, hopes, fears, dreams, tears, laughter...and on occasion even something as effectively simple as a Diet Coke. Captain Glucose and Meter Boy's motto is "Be Your Own Personal Diabetes Superhero." These amazing  people help make that an achievable goal for everyone.
 
So now whenever someone asks us what a diabetes superhero is, we tell them to go to their P-C or M-A-C and log on to the D-O-C. That's where all the real diabetes superheroes hang out ...just don't expect them to be wearing costumes!
 
Here is our new animated diabetes PSA about fighting apathy. It introduces our newest team member Dee Dee (a.k.a. D-Girl). We are honored that Kerri, one of our favorite diabetes superheroes, is letting us "world premiere" it here on Six Until Me.

-- Bill Kirchenbauer (T2) and Brad Slaight (T1)

*   *   *

(If YouTube is on the fritz, you can also check out the video on the duo's website.)  Thanks for helping to raise awareness and defeat apathy, guys!!!  

June 14, 2011

Joslin Medalists: How Far We've Come, and How Far We Can Go.

During the Joslin medalist meeting last week, I didn't say anything.  I wasn't presenting or doing any kind of networking.  I was invited as "media" (totally in quotes) but I attended as a grown-up child with diabetes, hoping to continue on that path of growing up. 

I sat next to a woman named Eleanor (my beloved grandmother's name) and she had been living with type 1 for 58 years.  She asked to see pictures of my daughter.  She offered me a cough drop after I spent a few minutes trying to clear my throat, and she stuck her hand out to take the wrapper, spying my pump tubing jutting out from my pocket.  "I don't wear a pump," she said.  "I do just fine with my needles.  And you appear to be doing just fine with your pump.  Do you need another cough drop?"  I almost hugged her. 

As Dr. George King, director of research at the Joslin Clinic, gave his opening remarks, quotes from the medalists were flashing up on the screen behind him.  "I have learned to understand that perfection is not possible."  "Tomorrow is another chance to do better."  "Say YES to every opportunity."  

These people were incredible because of what they've accomplished with type 1 diabetes.  Hilary Keenan, PhD and pat of the Joslin biostatistics team, stunned me with the stats on this group.  Their average A1C is 7.3%, with an average diagnosis age of 11 years old.  Their average age is 70.  The average duration of their diabetes is 59 years.  The most common ages for their type 1 diagnosis are age 6 and age 12. And this group of medalists have a very low rate of proliferative retinopathy and kidney disease. 

The amazing Joslin medalists (and some of the Joslin team)
Photo credit to the Joslin team

I sat in this room, listening intently, and thinking about my own life.  I've had diabetes for 24 years.  Long enough to appreciate where I've come from and what I've accomplished, and yet still a "rookie" in the eyes of these medalists. 

Not only are they brilliantly healthy, despite their diabetes, but they're also insightful and wise in that way that only decades of life can bring.  They stood up, one at a time, and introduced themselves to the group.  Their stories made me laugh out loud (like when the lady was talking about her CGM and her pump, and then someone's phone rang and she stopped to ask, "What kind of meter is that?" and the other woman answered, "It's a phone?"), made me grateful, and made me cry openly in this room of strangers.

"Eliot Joslin was my first endocrinologist.  He wore a charcoal gray suit and a crisp white shirt.  And the first time I met with him I said, 'Oh my God, he's an undertaker!'"

"Diabetes has given me so many opportunities.  I had a chance to spend time with Bret Michaels."  Pause.  "But I didn't know who he was.  Now I do, though!"

"I have seen many doctors retire.  I don't have that option, so I keep finding new doctors."

One man talked about the party he threw for himself when he reached 63 years with type 1, as part of his 70th birthday party. "I handed out certificates to the people who helped me get here.  And I had one for Eliot Joslin that said, 'Helped to keep me alive, despite myself.'"

"We do our best.  And to God trust the balance."

"I was diagnosed when I was one.  My doctors told my parents I would die in my early 20's.  My parents didn't tell me this until I was, oh, well into my 50's."

"I'm here today, really, because of my wife," said a man with shaking hands.  

"Today, I brought with me my beautiful daughter.  Her name is Joslin. I named her for this wonderful place."

Me and my fellow Clara Barton Camp alumni, Jane.  YOU ROCK, JANE!!!
Photo credit to the Joslin team.  They also get credit for taking care of me and my friend here.  :)

But one man broke my heart entirely when he quietly stood up and addressed the group of his peers, his fellow PWDs with more than 50 years under their belt.  "One year, I asked the woman behind the counter how many of us there were.  How many medalists?  And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years.  And it wasn't until I was driving home that I realized what we're up against."  He paused and put his hand to his collar, absently touching the ribbon on his medal.  "And that is when I cried."

This whole experience was so inspiring, so humbling, and made me so aware of what diabetes has the potential to affect in my life.  I was born decades after these people were diagnosed, so I know things have changed for the better, as far as treatment options.  I know the outcome for people living with type 1 diabetes has improved by leaps and bounds.  This group of medalists began their journey with glass syringes and twice-yearly finger sticks.  We are a new generation of people with diabetes, and hopefully a healthier one. 

In 25 years, I plan to celebrate my 50 years with diabetes.  I can do this.  We can do this. 

[To catch a video of the Joslin medalists telling their stories, check out this post.]

June 13, 2011

From Abby: My First TCOYD.

Over the weekend, the TCOYD conference team visited Albany, NY.  I was hoping to make it to this conference, but ended up all tangled in life stuff.  (Like a Sparling spiderweb.  Ew.  Spiders.)  Thankfully, Abby was nearby and able to spend the day checking out her first TCOYD event.  (And she got to meet up with the fabulous Karen and Caroline, and several other members of the DOC.)  Here's Abby's take on the conference.

*   *   *

This past Saturday, I attended my first Taking Control of You Diabetes conference in Albany, NY.  It was really amazing, and I'm going to try and recap it in one blog post.  Which is going to be a challenge, but I'm feeling pretty motivated after seeing Dr. Edelman and Dr. Polonsky both speak as part of the conference.  AND I have pictures.  Let's get started!

The recurring theme that was pointed out by Dr. William Polonsky was that there isn’t anyone who doesn’t want to live a long, healthy life. As the day went on, I kept thinking about this and it really resonated with me. No matter how frustrated we get with diabetes, or our doctors, or our diabetes-police support groups … we all want to live a long and healthy life. This lead to the theme that Dr. Steven Edelman repeated;  being educated about how to take care of yourself isn’t enough – we need to be “activated,” or motivated to take action in our own health.

The morning session presented by Dr. Polonsky was called “Balancing the Emotional Highs and Lows of Diabetes.”  I cannot express how refreshing it was to hear a medical professional stand in front of a room full of people and tell us that if we feel sad, defeated, angry, hopeless, and tired because of our disease, we are in the majority and that is normal.  82% of people with diabetes worry about complications.  (My guess would be that the other 18% are under the age of 6 and don’t know what complications are.) I worry about complications every day. Every blood glucose reading I get over 200 mg/dl, I have this lightning-fast thought of “Ugh, I hope my eyes/kidneys/toes/heart/you name it are ok right now.” 

Dr. Polonsky offered up a lot of insight that struck a nerve with me. “We have too many labor saving devices that make it easy to be sedentary – it’s easy for us to be inactive.”  He mentioned this as he was explaining that it’s easy to make excuses not to exercise, but not in a way that assigned blame.  He also said that “having unrealistic goals sets you up to feel like a failure.” We should make goals that are small, and attainable, and don’t require a totally lifestyle change in one day. After reading Kerri’s post re: the goal bingo card, I’ve been really trying to set attainable goals for myself and it totally works! I used to be one of those “Will run a 5k in 3 months or else” kind of goal setters, and that does NOT work.  I left that session feeling like my sometimes passive approach at diabetes is not only normal, but expected and fixable. 

The DOC crew at TCOYD in Albany, NY.  Phew, that's a very technical alt text for ya.
The DOC, representing at TCOYD.  Holy initials!

There were a few moments during some of the sessions that left me more than disappointed. One doctor told us that no matter what our cholesterol levels or blood pressure, if you have diabetes you should be on a cholesterol lowering med, and a blood pressure medication, to fight off any future issues. I can’t even describe how angry I was with this. I understand the theory behind prophylactic medicine, but that’s just overboard. Rawr. There were also two Physician Assistants who were giving a talk titled “The Latest on Pumps and Continuous Glucose Monitoring Devices”.  Their slides were outdated and had inaccurate information, and they kept calling the receiver of a CGM a “transmitter.”  Frustrating.  In plenty of cases, there was a need for some clarification.  And we, as members of the DOC, were happy to help clarify.  Education is key, and attendees weren’t the only ones who needed some info refreshers.

But speaking of needing a little education, I attended the session on health care reform to help school myself.  I just graduated from college for good, and so health insurance is a big deal to me right now. (Not only that, but I want to be a diabetes educator and so I like to learn about all aspects of diabetes, not just the medical stuff.)  Kriss Halpern, JD lead this session. I have to be honest - most of it went right over my head.  I never have and probably never will understand law, politics, insurance companies, or Japanese.  But what I did manage to catch were the main points of Halpern’s discussions.  Here’s my takeaway: 
  1. Dependent children are guaranteed coverage through their parents until age 26. This is the one that most directly affects me, and I have to tell you that I know from experience this is misleading.  Medical insurance is extended. Dental, vision, and prescription aren’t necessarily included.  This means that my dentist appointment last week was my last until I get my own insurance. It also means that my eye doctor appointments are covered, but only because they are considered medical necessity because I have diabetes, and I have to pay for my own glasses/contacts from now on. (Mind you, this is through my personal insurance, I’m sure the coverages vary from person to person.) 
  2. There are state and federal laws that evaluate insurance rate increases. This means that they can’t just raise rates because they want to.  Nice to see that kind of check-balance in place for once.
  3. The medical loss ratio. There is a percentage of money that is required by insurance companies to be spent on medical things. So for large group insurances they have to spend at least 85% of their money on medical, and not on salary, advertising, etc. This seems cool to me, but it might have been this way forever? Like I said, I do not speak Legalese.
  4. Annual limits will be $0 by 2014, and lifetime limits are banned.  This has something to do with the amount of money people are capped at paying out of pocket, I think.   Anyone able to clarify this one? 
Not all of this made perfect sense to me, and I now know that I have a lot of research to do, and a lot of questions to ask. This stuff directly changes my life, and my bank account. I need to be informed.  And sessions like Halpern’s help me know where to start.

The TCOYD team encouraged support groups, taking small steps to better your lifestyle, and most importantly, that we are not alone in this.  And that’s such a huge part of LIFE management, not just diabetes management.  Thanks to TCOYD for providing such an inspiring event!

*   *   *
Thanks for attending this event, Abby!  And to check out coverage from last year's TCOYD conference in good ol' Rhode Island, you can read this post and this one.  :)

June 08, 2011

Bullet the Blue Sky.

What fun are random links if I can't share them with you guys?  These sites have been emailed to me, Facebook'd (what a crap verb), and Tweeted.  And now I'm channeling Bono (and wishing I had picked him up when he was hitchhiking in Vancouver) and bulleting the blue sky:

  • The International Diabetes Federation is making a video compilation in time for World Diabetes Day, and they're getting a jump on things by starting now.  They are looking for videos on "how you act on diabetes," which makes me want to participate in a round with Kabuki Doug, but I'm excited to see how this plays out.
  • And you can't mention video in this community without calling back to the You Can Do This Project.  Have you signed up?  Have you recorded your video?  No better day than today!
  • Unrelated to anything diabetes, my mother and I spent over an hour trying to assemble this shiny little nightmare - the Little Tikes Cozy Coupe.  The instructions are written in Japanese (truly - we never found the English translation) and you have to beat on this thing with a hammer numerous times before it somehow slides into place.  Thankfully, BSparl woke up this morning to find the car in our living room and she was ecstatic.  
  • There's a chat on Thursday night over at the ChronicBabe community, talking about being "real people sick."  To join in, you'll need to be a ChronicBabe member, and be sure to sign in at 9 pm Eastern Time over in the chat room.
  • Stuff Sick people Have to Put Up With:  A Tumblr dedicated to being "your window into a world of bureaucratic, patronizing bullshit."  Pretty direct, that.  (And I do love the guy with the pennies.)
  • F*$k Yeah Diabetic Cat:  Can't quite figure out what's going on with this one, but that Wilford Brimley cat cracks me up.  He looks so curmudgeoned and in sore need of a hairdo update. 
  • And lastly, if you'd like to dance with BSparl and I in the morning, we usually rock this song after she gets up from her morning nap.
End random links!  Onward to surviving this 90 degree weather and trying to stay cool.  (And yes, I just saw that tomorrow is supposed to be even hotter.  OMGWTFBBQ!)

June 06, 2011

Joslin Medalists.

I would love one of these one day.To be a Joslin Medalist, you need to mark 25, 50, or 75 years with diabetes.  (Well, technically, you get a certificate at the 25 year mark, but it's definitely a milestone to celebrate.)  And over the weekend, I had the opportunity to spend the day with Joslin's medalists who have spent over 50 years with type 1 diabetes. 

I was invited as a member of the "media," but it was a strange experience, being "one of them," but only halfway there.  ("You're a nice kid, but you're still a rookie in this crowd," one woman said, flashing her medal and her smile at the same time.)  These generous medalists allowed me to listen to their stories, and offered a few sage words of advice into my video camera.

(Best response that didn't end up on camera:  "That's a video recorder? I have glucose meters bigger than that!")

While I compile my notes, let this video suffice as evidence that we can do this.  And seeing living, breathing, laughing proof of that is an amazing thing.

May 26, 2011

Diabetes Rockstars.

People within the diabetes community are strong, resilient ... and apparently pretty creative on the lyrical tip.  This video was sent to me by a reader, and even though the visuals on it are just the lyrics, it did crack me up (and she's quite the songbird)!  Created by Denise, who blogs at My Sweet Bean and her Pod, this song is now part of the diabetes-themed song library.

"We can rock a SWAG for any popsicle." and "Pancreas stand-ins, now put your hands up" may be among the best diabetes-lyrics I've heard since ShugaSheen's debut.

May 10, 2011

D-Blog Week: Letter Writing Day.

All the shit I wish I had known.  I mean, the stuff I wish I had known.Dear Littler Me,

I wish you'd known you weren't alone.  That even though you didn't have a bunch of friends with diabetes (YET) when you were growing up, you still had lots of friends.  And a family that loved you.  And people who didn't understand exactly what it meant to be "low" or "high," but they wanted to, and they tried.

I wish you had known that there were other kids just like you.  It wasn't until you spent your summers at Clara Barton Camp that you realized just how normal diabetes was for some families.  That some kids woke up every morning, just like you did, and shot up.  Or that some kids were hounded by their parents to "just let me check your pee for ketones, okay?"  

I wish you had known that doctors lie.  That when they said, "This won't hurt a bit," it was going to hurt anyway.  That when they promised not to draw blood from your arm unless your parents were there, they lied and instead stole into your hospital room at 1 am and woke you up with their midnight vampirism.  I wish you had known that when they said, "Kids may not be in your future," you didn't have to believe them.

I wish you had known about the impact of sorbitol and other sugar-substitutes on your little kid tummy.  Dude, that stuff will wreck you up right proper.  And for days.

I wish you hadn't written those notes on the backs of school quizzes and then stuck them into your Bible for safe-keeping.  The ones that included long diatribes about how some girls in your class didn't understand.  Or about how you were 385 mg/dl and you had eaten the cupcakes you claimed to have ignored, and you wish you felt brave enough to confess to your mom.  I wish I didn't find those notes 18 years after the fact.  I wish I hadn't remembered how isolated and guilty and scared I felt at those times.

I wish you had known that, despite the excuses you wanted to make, that every day matters.  I'm glad you know it now, but I need you to remember it more.  Every day matters, Kerri.  Yesterday may not have been the best diabetes day, but today can be better.  Stress and work and vacations and traveling and motherhood will always be there.  You need to learn how to dance between those raindrops and still give your health the attention it deserves.

I wish you had known that pumping insulin was going to be an easier transition than you thought.  I know you were scared about having an "external symptom" of diabetes, and worried about the implication of "robot parts" on your dating life, but it wasn't an issue at all.  (Your husband hasn't ever known you without the pump - who would have thought?!)  

I wish you had known, in that moment of diagnosis, that it was going to be okay.  There are ups and downs with everything, and diabetes is part of that ebb and flow, but there is life to be lived - a good life - even with diabetes.  You have some extra issues to deal with as a result of this disease, but you will be okay.  Remember that, especially when you feel overwhelmed now, as an adult.  Don't lose hope, even in that cure that's been promised to you five times over now. And don't, for crying out loud, let any kind of pity party overtake who you are.

I wish you had known that you CAN eat that, and you CAN do that, and you CAN work there, and you CAN love him, and you CAN be loved back, and you CAN be happy.  So go DO and BE, child.  Enjoy every minute, because it goes by in a blink.

Love,
Future You

*   *  *

(This post is part of the Second Annual D-Blog Week.  To participate, check out the details on Karen's blog!  And thanks, as always, to Karen for organizing such a great advocacy effort.)

April 22, 2011

Earth Day and Diabetes.

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

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

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

How do you keep your diabetes green?

April 05, 2011

Be Your Own Advocate.

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

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

March 30, 2011

You Wrote, MTV Answered.

The DOC, when acting in unison, is a LOUD voice.  Thanks to everyone who wrote letters to the MTV casting agent for True Life: I Have Diabetes (including, but not limited to, my red-headed friend Nicole in CT.  Thank you, Aunt Spazzy!!), the casting call has been updated to something a little less offensive, and many of us have received this form letter from Miscellaneous Media:

To Whom It May Concern,

Thank you very much for your note. I apologize for returning it with a form letter, but we've been getting so many emails from your community regarding our clumsily written casting call that it would be impossible to respond to everyone individually.

First of all, I'd like to apologize for not being more articulate in our casting call. We didn't mean to offend anyone with diabetes with the wording of our post. These casting calls aren't written to define the exact types of stories we plan to cover, they're meant as a starting point to begin a dialogue with potential subjects. It's a very general way to get a conversation going with people who want to write in and share their story with us.

For this episode, we are looking for three people who can be our tour guide for what it is like for them to live with diabetes. It's hard to say whether our subjects will have type 1 or type 2, since we haven't begun filming or chosen final subjects yet. But with True Life, it's always best to find folks from all walks of life who have a diverse set of circumstances.

Because of all of your enlightening emails, we have changed the wording of our casting call so that it asks whether people writing in are type 1 or type 2. We have done the research, and we know what the differences are, but we're still not the experts. It's the people who tell their story, from their point of view, who are the best experts on what it means for them to have the type of diabetes they have.

The bottom line is that we just want to make a great documentary about what it is like to be young and living with diabetes. And right now, it's impossible to say what points will get made in this episode since we haven't cast subjects yet.

Thank you for all of your emails, and again, my sincerest apologies.

All the best,
Patrick
Miscellaneous Media

Spreading the word about REAL life with diabetes, not just the extreme moments.  I'm very hopeful that the diabetes episode of True Life shows what living with type 1 diabetes is really like.  (Now how do we get Abby on this episode?  ;) )

March 22, 2011

Guest Post: Diabetes Alert Day.

Today is Diabetes Alert Day.  What does that mean?  (Here - let the ADA help explain.)  Diabetes Alert Day points a spotlight on type 2 diabetes, encouraging those who are living with type 2 to take control and for those who may be at risk to get tested.  I'm really proud to be hosting my friend Rachel Baumgartel's words on SUM today.  Rachel is a passionate diabetes advocate with a type 2 voice, and you can find her online contributions just about everywhere:  on her personal blog Tales of Rachel, at Diabetes Daily, 'midterning' at Chronicbabe, and participating in the Diabetes 365 project on Flickr

She's offered to post about her own diagnosis with type 2, about being young and living with a chronic illness, and her encouragement to anyone who may be at risk to get tested.  

*   *   *

Often I find myself jealous of people my age who are lucky enough to have one or more grandparents still living and still aware of their surroundings.
Rachel Baumgartel - thanks for guest posting today!
You see, I never knew my own grandparents. Both of my grandmothers passed away before my parents were even married. Both of my grandfathers passed away before I was old enough to notice.

Still, I grew up knowing that both Grandpa and Grandfather lived with type 2 diabetes in the last years of their lives and the condition likely contributed to their deaths. Grandpa, who adopted my father and his brother with my grandmother, took insulin, scaring off my much older siblings when he took out the needle. Grandfather, who never crossed me as being overweight in photographs, took one of the early oral diabetes medications in the 1970’s.

For whatever reason, this family history, both with the genetic connection and without, did not occur to me upon the first warning signs that arrived in the form of spilling sugar in my urine at a routine physical at age 25. Besides family history, I could knock off no fewer than three other risk factors for type 2 diabetes at that point – being borderline obese, exercising less than three times a week, and having borderline high blood pressure.

While I became more active and smarter about food choices after this pre-diabetes warning, I could not overcome an undiagnosed thyroid issue that slowed metabolism to a point where weight loss stalled and eventually caused all-day fatigue, which slowed my activity back down to a minimum. And so I ended up with a type 2 diabetes diagnosis less than four years after that annual physical.

By that time, genetics had made themselves more apparent with type 2 diabetes diagnoses for both my father, whose biological family history was unknown at that point, and my mother’s sister, who struggled with weight. Still, it baffled me how I could be diagnosed at 28 years old while they were in their sixties.  

(In fact, I found much more in common with young adults with type 1 diabetes who were buying houses and building careers than older adults with type 2 diabetes who had mortgages paid off and looking towards retirement. No wonder I am one of the few active type 2 members of the diabetes online community!)

As I grew more conscious of type 2 diabetes and its potential progression, I realized how much earlier this was caught for me with “only” a 6.4% A1C and how much earlier I could make necessary changes so that diabetes may not impact my life expectancy.  I managed to find my inner athlete and learned how to cook some tasty, yet healthy meals.  Six years later, the only change to my diet and exercise regimen has been metformin to increase sensitivity to my own body’s insulin.

Knowing the risk of type 2 diabetes and then knowing if it is time to start screening for it is of utmost importance for prevention of this type of diabetes or to avoid major complications if a diagnosis is made. Lifestyle factors such as weight and activity levels combined with family history and race produce risk levels.  That is what Diabetes Alert Day, a project of the American Diabetes Association, is all about – finding out what your risk might be.

Now I understand that most of Kerri’s readers are people with or parents of children with type 1 diabetes, but perhaps type 2 diabetes does happen to run in your family.  It is still important for you and/or your family members to take this quick and easy risk assessment. After all, while the disease process between the two main types of diabetes may differ, we all end up with the same potential complications that threaten to reduce our life expectancies.

*   *   *

Thanks for posting, Rachel!  And for more information on Diabetes Alert Day, please visit the American Diabetes Association's website.

March 21, 2011

The JDRF and the Online Community.

RAISE!  YOUR!  VOICE!  Wherever you see fit.  :)As a kid, I wasn't an advocate for type 1 diabetes.  I was a kid.  I went to diabetes camp (CBC 4 LIFE) but that was the extent of my involvement with any kind of diabetes community.  It wasn't until I was out of college and feeling like I existed on a diabetes island that I began to crave interaction with and understanding from other people with diabetes.  So, at Chris' suggestion, I started a blaaaaaagh and everything just got all sorts of exciting.  Namely, I had finally connected with other people living with diabetes. And it felt gooooood.

Now that there is an established online community for people with diabetes (PWDs, caregivers, and loved ones alike), there are a lot of opportunities for engagement and advocacy.  The DOC isn't limited to adults living with diabetes; there are blogs written by parents of CWD, spouses and significant others of PWD, and even doctors who care for PWD.  And it's not even limited to people who are interacting online - the diabetes community is offline, and on.  And after meeting with the new CEO of the JDRF, Jeffrey Brewer, last week in DC, I realized once again that we're all in this together.  This guy gets it.  His kid has diabetes, making me realize that Jeffrey is just like my mother in that he wants what is best for his child. 

But what cracked me up is how Jeffrey realizes that those of us who are adults with type 1 are a version of what his son may grow up to be.  We're still living with diabetes, we have "real lives," and we aren't perfect.  He and I were talking and the concept of "a perfect diabetic" came up in conversation.  During the course of our exchange, Hasan Shah (the Grassroots Advocacy Manager at the JDRF) came up and asked if I was really carrying a unicorn puppet around with me. 

(How do these rumors start?)

"Yes, I do."  I rummaged around in my purse until I was able to grab Sprinkles by the yarn mane.  "Here.  This is the DOC Advocacy Unicorn: Sprinkles."

Jeffrey was a little taken aback.

"What's that, again?"

"The advocacy unicorn.  Because I have this belief that we make diabetes look a little too easy sometimes, and it's important to remind people that type 1 diabetes isn't always rainbows and unicorns.  And that despite the fact that we oftentimes don't look sick, we still deserve a cure."

(And if there was ever a time I wish I had captured the look on someone's face, it was at this moment.  A mix of "Ah ha" and a total "Are you low?")

"Makes perfect sense," he said.

"I don't always carry puppets around with me." I replied.

But this goes to show that the people who are involved with the JDRF don't just "get it."  They "are it."  And they aren't alone: there are plenty of people who are involved with many different diabetes-related organizations who are pushing for and passionate about progress towards a better life with diabetes and a real-deal cure.  Diabetes advocacy isn't limited to one organization or one mission:  any steps towards a better life benefit us all.  Because you can bet your ... everything that I want to be as healthy as possible for as long as possible.  

This past weekend, I was the Fund a Cure speaker for the Rhode Island JDRF's second annual Hope Ball, and had the honor of speaking to that crowd.  Between the Government Day experience and attending the Hope Ball, I've been reawakened to the impact that the JDRF has on people with diabetes.  And I'm not talking about the Bag of Hope - I mean the real research and government relations that are changing the landscape of our diabetes collective.  Not just for kids, but for the parents taking care of them, and for the adults those children will hopefully become.  

It's a group effort, this diabetes thing, and I think that the JDRF and the online community can work together to effect great change.

Diabetes advocacy isn't limited to one organization or one research ambition.  What organizations do you dedicate your advocacy time and efforts to, and why?  Do you find yourself donating your time to a broad range of diabetes efforts? 

March 11, 2011

D365: Third Time's the Charm?

I accomplished a full year of Diabetes 365 back in 2008.  It was the year I was getting married, and looking back, I love that I have a year's worth of photos to mark the fun buildup to that huge moment in my life. 

I tried again in 2010 in efforts to chronicle my pregnancy and the chaos of new motherhood, but failed miserably.  Once the baby arrived, my camera only had a lens for BSparl.  Diabetes photography fell by the wayside.

So ... glutton for punishment that I am, I'm giving the Diabetes 365 project another go for 2011.  I'm making today my starting point, and hopefully next spring I'll be loading up the last of the photos and enjoying a milestone of photographic success.

... or I'll be writing some other post about how I bailed on the project again.  We shall see.  Only time and the camera will tell.  

My 2011 attempt kicks off with an item that's near and dear to my heart:  coffee.

COFFEE!  It's like insulin, only cheaper.

Coffee and I go way, way back to when I was a breakfast waitress in college, slinging eggs and refilling people's coffee mugs while wishing away hangovers.  (College was a fun, but exhausting, time.)  Now, I start the coffee up each morning while I make BSparl's bottle.  My, how things have changed.  

If you have a camera and a sadistic desire to attempt this project, join me on the Diabetes 365 Flickr pool!  And you can following this year's attempt on the SUM Diabetes 365 page.  Happy shutter-snapping!

February 28, 2011

Inspired.

I spend a lot of time writing about diabetes within the diabetes online community, but I don't have a lot of opportunities to bring diabetes advocacy outside of certain parameters.  I've done some guest blogging for non-diabetes sites, but for the most part, I speak about and to the diabetes community.  Sometimes my advocacy efforts exist within a bubble. 

But last week, I had a chance to step entirely outside of my comfort ... bubble? and speak with woman bloggers who aren't living with or caring for diabetes.  It's very humbling to sit in a room with women who have lost a child.  Or who have traveled to Africa to work towards eliminating pediatric AIDS.  Or who have made a difference for women who are dealing with depression or anxiety.  Women who can make you laugh while they describe the darkest moments of their days.  Women who can find something beautiful with just a click of their shutter.

On Thursday, I traveled to New Jersey to meet with members of the Johnson & Johnson team, the Edelman PR team, and some very powerful bloggers in the parenting space.  I was honored and humbled to be in the company of Alice Bradley, Karen Walrond, Heather Armstrong, Ana Roca Castro, Catherine Connors, Katie Allison Granju, Jennifer Hutcheson, Nirasha Jaganath, Isabel Kallman, Jyl Johnson Pattee, Ellen Seidman, Heather Spohr, and Allison Worthington.  An intimate but inspiring group gathered (and dubbed 'a salon') to talk about using social media to contribute to social good. 

When it came time to introduce myself to the group, I was shaking with nerves, not sure how I ended up in this room full of change-affecting women.  (They DO know I blog about my cats, right?  I mean, really.)  I stammered through an introduction, unsure of what to say or how to measure up to these fellow bloggers, but hoping that they'd reweave my words into something that properly represented the passion and power of the patient blogging community.  After introductions, we talked.  All day.  Stories were shared; people laughed because it felt right and because it filled a moment where tears would have otherwise flowed.  (But tears flowed at times anyway.)  We discussed topics including preterm childbirth, pediatric AIDS, using social media to help educate new moms, and how we, as social media influencers and strategists, can impact positive change in these areas. 

And these discussions really embedded themselves in my brain, because it became clearer and clearer that blogging is more than just a web page filled with musings.  A blog, and a blogging community, is a vehicle for change.  Diabetes bloggers are helping to raise awareness and funds for a disease that much of society ignores or misunderstands.  I think that diabetes bloggers make a big emotional difference for ourselves and our fellow PWDs, but I do think we can do more.  And after sitting with these really inspiring women, I'm both inspired and convinced that we CAN do more.

What, exactly?  I'm not sure, but there are a few ideas percolating in my brain.  I am tired of diabetes being a condition that is ignored by society as a whole.  Just because we don't look sick until we're dealing with serious complications doesn't mean we don't deserve a cure.  And just because many of us have grown up past the "children with diabetes" phase doesn't mean that our adulthood with diabetes should be written off as "easy" or unsupported.  The support I've received from the online community has been changed how I manage my diabetes and the emotions related to chronic illness, and I want everyone who is living with diabetes to have access to this kind of care. 

I left the meeting in New Jersey renewed as an advocate and amped up as a member of the patient blogging community.  And I can't wait to develop and implement new ideas with our diabetes online community.  More to come, but for now, I'm just INSPIRED.

Advocacy is in bloom.  ... whoa, that's a lot of advocacy.

[Disclosure:  Johnson & Johnson paid me a consulting fee to attend their New Jersey-based Salon and advise on using social media for social good. I was not paid to write this post. I'm also sure there are typos in this post.  Opinions expressed, as usual, are my very own.]

February 22, 2011

Diabetes Terms of Endearment: Third Edition.

Diabetes Terms of Endearment:  Third EditionPeople living with and caring for diabetes have their own special language; it's a language that includes terms like "no-hitter" and "tsunami" that people without diabetes wouldn't understand, but those with it nod their heads and say "Yup.  Same here."  This dictionary is compiled from input from the fabulous diabetes community and is definitely a collaborative effort. 

Bring on the dTOES (Diabetes Terms of Endearment): Third Edition!!

*   *   *

A1C twins
Two PWDs having the same A1C within the same week of endo appts

"Are You Unplugged?"
How to intimately ask if your partner has unhooked his/her pump site.  A way of subtly asking if it's sexy time.

Baby Bear number
When your number is in target, or juuuuuust right
ex. “It's almost time for lunch, go ahead and do a stick. What'd you get? Hey, great, you're Baby Bear!”

Basaling

The act or process of working out kinks in the basal rates 
ex.  “I was up half the night basaling.” or “We're skipping breakfast today because we're basaling.”

Bat Belt
The belt of a PWD (person with diabetes) who has all their diabetic accoutrements worn about their waist.  May include insulin pump, Dexcom receiver, and that grappling hook thing Batman uses to climb over buildings.


Beeg
The oral version of the abbreviation "BG" (for "blood glucose")  
ex.  “I’m checking my beeg!”

Bionic parts
A method of referring to diabetes technology instruments.  These items are often found on the aforementioned "Bat Belt."

Bolus-worthy
Food that is enticing enough that we'd take a ton insulin for it, despite any blood sugar results
ex. “That chocolate-covered cupcake looks bolus-worthy

BS-brain
aka "Blood sugar brain," the fog, agitation that seems to last all day and affects everything after a bad low or high blood sugar

Buddy Batteries

AAA Energizer pump batteries solely reserved for use in diabetes devices.  A lack of Buddy Batteries may result in an incident of D-Postal.

Case of the Ms
When your continuous glucose monitor graph looks like giant M's.  (Editor's note:  M's or W's.)

Case of the Shakies
A low blood sugar episode that causes shakiness


CDD
aka "Crappy Diabetes Day", when your blood sugar goes from 43 mg/dl in the morning, to 37 mg/dl an hour later, to 243 mg/dl at noon, to 321 mg/dl at 3 pm, back to 54 mg/dl at dinner, plus you might have an occlusion as well just to top things off.  See also: Gluco-coaster

Chaser
The bolus given when a PWD consumes a copious amount of food to treat a low blood sugar

Checka
A cuter way to reference a blood sugar check.  
ex.  “Time to checka your blood, mommy?”

Cluster-Beep
When you have to pull every single device out, from cell phone to CGMs, to figure out which one is beeping, buzzing, or just being a general pain in the arse. (It also applies to having to pull the same device out twice in 30 seconds)

D'Ambien experience
One of those middle of the night lows where you can't remember what you ate or drank, or how much, as well as any conversations you had. Quite similar to someone's night who takes Ambien.

D-Dumb
Term applied to people who just don’t "get" diabetes

D-Mom/D-Mama
The mother of a kid with diabetes, taking the disease on as their own.  See also:  Surrogate Pancreas

D-Postal

The act of lashing out as a result of societal misunderstandings of diabetes.  
ex. "You can’t possibly understand how hard it is living with diabetes, so I’d advise you to step down before I start beating you with my pump and a fist full of glucose tabs."

Diabadass
A PWD who does something awesome that non-badasses think diabetes should stop them from doing (e.g. having babies, biking across the country, playing in the NFL). See also: most members of the DOC

Diabetonese

The language of managing this madness! See also: all three editions of Diabetes Terms of Endearment

Diabuddy

A real life friend who also happens to have diabetes, too

Dia-
(can be an adjective, noun or verb) A prefix applied to any word when diabetes impacts said word.  Examples include "diafail," "diawin," and "diabadass."  Often found as Twitter hashtags and in the Clara Barton Camp dining hall conversations.
ex.  "I can't believe I forgot to bolus for the seven pancakes I ate for breakfast ... diafail!"

Diasecret
Those diabetes-related secrets that you have never told anyone

Diaversary
The anniversary of your diagnoses date, (aka the time you stick it to diabetes no matter what the blood glucose number is.  ex “We're having cake for dessert to celebrate your diaversary. You're 250? Then we'll just have to bolus extra.")

Disco Boobs
When a pump is hidden between a PWDs breasts, that moment of when it lights up and starts beeping, giving the chest area a look not unlike a disco ball.  See also: Iron Man

DOS Bag
aka "The D-Oh-Sh*t bag," the bag where a PWD carries around all of their emergency supplies (it goes everywhere) - extra infusion sets, insulin, extra strips, back up meter, juice, tabs, Glucagon, etc

Double Downing
When your continues glucose monitor graph has two down arrows, telling you you’re dropping fast

Double Rainbow Day
Means a line on the continuous glucose monitor that is inexplicably good and deserves ecstatic celebration.  See also:  What does it MEAN?

DSMA
aka #dsma aka Diabetes Social Media Advocacy.  Refers to a Twitter chat that takes place every Wednesday night at 9 pm ET, where members of the diabetes online community talk about diabetes lifestyle issues

E.T.

When your pump is still lit up inside your shirt

Exercise
Any form of physical activity, which most often effects blood sugar levels directly.  Such activities that may affect blood sugars include running, tennis, shopping, sexy moments, parking your car, lifting a pencil, and sometimes just the mere thought of exercise.

Flatlining
When your blood sugar is holding steady as seen on a continuous glucose monitor graph (see also: no-hitter)

Frankenbutt
When an old pump site is on the left side of your backside and you place the new one on the right, leaving the bum looking like Frankenstein’s neck with the bolts sticking out

Free Shower Day
Taking a shower on the day that your infusion set and/or CGM sensor are being swapped out, leaving your skin site-free

Glucocoaster
A crazy CGM graph.  Antonym:  no-hitter

Glucover
Diabetic version of a hangover. Is the after-affect of a bad late night low. Most often includes headaches and a bad taste of old orange juice and decaying glucose in your mouth. Cracker and candy wrappers and empty containers of food are often found lying around the person who is having the glucover. Most remedies include: brushing of the teeth, heavy applications of makeup to remove bags under eyes, Tylenol, and healthy binge eating.

Hard Low
There is a low and then there is a HARD LOW.  Most often coupled with standing with the refrigerator door open, eating the majority of a pound cake, and washing it down with half a bottle of grape juice.  Often followed by a Chaser

Hooked
When going about normal, everyday life and an inanimate object jumps out and grabs at an infusion set tubing, resulting in pain and/or cursing and/or the pulling out of said infusion set

H.A.B.
Huge Ass Bolus, usually taken in conjunction with huge ass meal

Insulin-Mama
The name my family calls me since my daughter regularly follows me through the house carrying crackers in her hand, saying "Insulin, Mama!"

Juicer
Another term for "insulin pump"

Lazy River Ride
An in-target CGM graph.  See also: flat-liner and no-hitter

Leaning
The act of standing quietly while low trying to hide a low blood sugar "lean" and someone notices you slightly tipping over

Liver Dump
When your blood glucose rebounds after a hard low (usually one in the 40s or below)
ex. "Hey, Mr. Liver ... thanks for the help, but it is a little too much and a little too late."

Make a Ladybug
To form that giant drop of blood that the old glucose meters used to require

Morning Boost
Refers to drinking coffee and the subsequent blood glucose spike the caffeine offers up

Mother-Birding
When a D'Rent feeds their young child glucose tabs or a sugar source

No-Hitter
A time period in which a diabetic does not hit their high or low threshold on their CGM. For a Dexcom user, they must be without any alarms during the entire day, and the day must be at least 24 hours. A diabetic who prevents their blood sugars from reaching a threshold is said to have "bolused a no-hitter."

No-No Cupboard
Where you (or your mom) keeps all your diabetes snacks that are off limits to others

Number
The glucose reading on the meter.  "Number" no longer refers to a phone number, jersey number, or the number you’re holding in line at the deli counter

On the Rise

When you're blood sugar has been low for so long, and then FINALLY shows signs of coming back up ex. "72. Thank goodness! I'm on the rise!"

Poker
Lancing device, also known as a "pokey"

Pump Envy

The feeling of T2/1'ers who are taking insulin injections 4+ times per day but do not qualify to receive a pump due to insurance issues or having a MiniMed or Animas or whatever-brand but coveting another brand or newer model

Pump-It-Up

What to do when you see a dessert that you just can’t resist (while simultaneously doing the raise-the-roof gesture)

SDD
aka "Shitty Diabetes Day."  May include any of and more than the following: feeling terrible due to blood sugar fluctuations, running out of low blood sugar treatment methods, needing to skip exercise due to blood sugar issues, and any and al instances that lend towards a "Diabetes: 1; Me: 0" day.

Sleep Treating
The act of bolusing, changing basal rates, or silencing ones CGM in the middle of the night without actually waking up to do so…(makes for interesting mornings…)

Stick
When ‘blood sugar test’ gets to be a mouthful

Sugar Baby
A name to call someone with diabetes, such as your daughter

Sugar Bloods
A more fun way to say blood sugar (especially with a southern accent)

Sugar Buddies
When you and another both have diabetes.  See also:  Diabuddies

Sugar Hang
The horrible headache that comes after a bad low or high

Sugar-Soil
When you get sugar on your fingers after treating a low which results in a falsely high re-check

Tsunami

A result of over treating a serious low blood sugar
ex. "Blood sugar at 38 mg/dl, can't hardly walk, grab the quart of OJ, not following the 15 rule. Result: two hours later a Tsunami blood sugar of 300 mg/dl.

Venom

What spews from our mouth when our blood sugar is off the charts high and we are less than sweet

"What’s off Limits?"
How to intimately ask where your partner’s pump site/continuous glucose monitor are located on the body
 
Winter Muted
When a pump or continuous glucose monitor is concealed under so many layers of clothes, its beeps are inaudible

Woodchuck
Safe word for “check your sugar” if you’re acting bitchy during a low blood sugar moment
(Editor's note:  Sounds like it could be "Wood-ya-chuck your blood sugar?"  PUNS!)

*   *   *

The first edition of dTOEs can be found on the old SUM blog, and the second edition can be found here. A compilation eBook will be available soon, with all three editions (and some bonus new terms) included!  Should be up in a few days.  Thanks to everyone for their input, and for Abby's help in compiling this edition.  :)

February 16, 2011

I See Pump People.

Navy Seal PWDs are everywhere.  LOOKOUT!A few weeks ago, Chris and BSparl and I went out to dinner.  Dining out with our little bird is a bit of a tangled experience, and we don't spend as much time people watching as we used to because we're very preoccupied with the baby wrangling. 

That night, though, we were sitting and settled and throwing gluten-free puffs (yes, all of us) around the dinner table like confetti when I saw this woman walk in with her family.  She settled her family in at the table, and then reached to remove her coat, revealing a beeper clipped to her pocket.

Only it was one of them fancypants beepers with the tubes and the buttons and the accompanying not-making-insulin pancreas.  Reckon it was an insulin pump.

Immediately, I wanted to swing mine over my head like a lasso and say "OMG lady, me too!!!"  I've had this feeling before, of wanting to sidle up next to someone and say, "I like your pump; want to see my pump?" but to me that sounds more like an awkward attempt to flirt instead of a moment of diabetes bonding.  Living in a very comfortable bubble of diabetes advocacy makes me think that everyone who has a visible "symptom" of diabetes wants to talk about it.  I have to remind myself that some people just plain don't want to talk about it.

But since I still wanted to say something, I targeted Chris instead.  

"Dude, 12 o'clock.  Actually, my 12 o'clock, your six o'clock.  Minimed pump on that lady."  I said to Chris without moving my lips, as if a pump sighting was a covert Navy Seals operation.

"Six o'clock?  Okay, do you guys know one another?  And why are you whispering?" he whispered back.

(I love that because she and I both wear pumps, we must know one another.  I've brought him right into this bubble with me.)

"No, I don't know her.  I have no idea who she is.  But I just saw her pump."  I paused, still whispering.  "And I was like a toddler, wanting to wave my arms around and say 'Pump! Pump!'"

He laughed.  The waitress came over to bring our food, and the two of us were immediately distracted by keeping BSparl's grabby little hands away from the hot plates. We had a nice dinner, and I sort of forgot about the fellow Navy Seal at the other table.

... Until we were leaving the restaurant, when I saw her glance at my hip (where my Animas Ping was tucked away), nudge her husband, and give a little nod. 

In my head, she whispered, "Dude, four o'clock.  Animas Ping.  Hooyah!"

February 14, 2011

Won't You Be My Valentine?

Oh rotting, feeble pancreas of mine,I'd send my pancreas roses if it would get off its ass.
Won't you be my Valentine?
Won't you wake from your long sleep
And make some insulin, you creep?

What makes you sit, all shaped like a wiener,
Lazy and dull, with a pompous demeanor?
What makes it okay, that for your enjoyment
You've spent twenty plus years filing unemployment?

We need to start over; we need to be friends.
We need this whole type 1 diabetes to end.
I'm tired of shots and I'm sick of the lows,
So I think we should talk about ending this row.
I could use a break, my corn-cob-shaped friend.
I'd love to have 'old age' listed as my end.
I think that your time off has drawn to a close.
I'd like working islets, and plenty of those.

How 'bout it, old pal?  Care to start working?
Care to start minding duties you've been shirking?
I promise to be an attentive best friend,
I'll thank you each morning and as the day ends.
I won't take for granted the hormone you make
And I'll forgive you for the last 24 years' mistake.

I've brought you some flowers and a Border's gift card,
In hopes that when I bring milkshakes to the yard
You'll be so inclined to jump start all those islets
Who've been holding their breath for so long that they're violet.

So what do you say, oh pancreas of mine?
Won't you be my Valentine?

February 11, 2011

Adding to the Dictionary.

Ready for round three?  Yes?  No?  Maybe?  Check one.The first Diabetes Terms of Endearment post went up on my old Blogspot blog back in March 2006, and re-reading last night made me laugh all over again.  (Everything from SWAG bolusing to dotties was on that list!)  Then I found the dTOEs from April 2008, where we saw vampires cannulas and the acronym "YDMV" added to the pile. A community effort, with our whole community contributing.  (Only back in 2006, there weren't nearly as many of us online - power to the patient bloggers!)

But it's been a looooong time since the last dTOEs - like three years?! - and I know we have a bunch of words and phrases that only people with diabetes would really understand.  (Like no-hitter.  And #dsma.)  So I think it's time for a third edition. 

For the community-compiled third edition of dTOES, I'd love to hear from anyone who has a term that they use as part of their life that has become part of their vernacular.  The weirdo terms that you throw out at a dinner table with friends and they drop their forks to their plates, startled, while you're casually mentioning "shooting up." 

If you want to email your diabetes term of endearment (aka "sniglet" ... remember those?), please send them to Abby at abby (at) sixuntilme (dot) com with the subject line "dTOEs."  And if you want to leave them in the comments section of this post, go for it.  Third edition's the charm, right?  If you can send these/leave comments by Monday night, that would be awesome!!

Enjoy your weekend, and I'm looking forward to what our community comes up with this time!

February 10, 2011

From Abby: Standards of Care.

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

*   *   *

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check. Moms are badass and can lift like a million times their own weight. Ants are cool, too.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

February 09, 2011

A CGM Visual.

When I look at the graph on my Dexcom, I like to see a nice, flat line.  You know, like a bread stick (that would be flat if I had rotated it a bit in Photoshop but I forgot and now it looks a little like it's a rising blood sugar holy run on sentence AGAIN #Bes).  Imagine it flat:

A breadstick.  Not to be confused with "Breadsticks," which is from Glee.  And Glee is awesome.

But some days, my Dexcom graph looks a little less friendly, and more like a big ol' mess.  Like a rollercoaster:

I can't even look at roller coasters without thinking "Oh!  Diabetes!"

Or the top of the Arby's hat (that's on days when my blood sugars really kick my ass):
Arby's burgers gross me out.

Or that picture from The Little Prince where a snake devours an elephant and it looks like a hat:
One of my favorite books.  Kid had his own planet!

And there are some days when the stupid thing looks exactly like a giant letter M, having tea with a giant letter W:

Oh cut me some slack.  I suck at Photoshop.  But that M and that W do look delightfully happy, no?

I aim for no-hitters as often as I can, but it seems like tea parties are all the rage these days.  I need more breadsticks.  

(And now I'm seeing CGM graphs everywhere I look, and it's freaking me out.)

February 07, 2011

Postsecret.


I scrolled through this Sunday's PostSecret and this postcard submission jumped out at me because I saw diabetes written in invisible ink underneath that frosting.  (Also, the photo permalink URL included "onbackdiabetestype1forever," so that was a bit of a hint.)  And I realized, thankfully, that I don't hold any secrets about diabetes, because I've had the good fortune of this community to help me feel supported and empowered enough to deal with all my diabetes demons openly and unabashedly. 

I've had a few ideas for a non-diabetes related PostSecret postcard in my head for a few years now, and I took these pink cookies as a sign that 2011 is as good a time as any to let some things go.  PostSecret is kind of like Pandora's box, only the secrets that are released come from inside of you.  Like blogging, it's a unique kind of free therapy, and who can't use that every now and again?

Thanks for the inspiration, diabetes postcard writer. 

What would be on your PostSecret submission?  Feeling brave?  Leave an anonymous comment here, if you want.  Or submit your own PostSecret to Frank (does he have a last name, or is he like Cher?). 

January 28, 2011

Diabetes Goal Bingo!

Recently, I reconnected with a long-lost local PWD named Ryan.  Last time Ryan and I saw one another, we were talking about diabetes goal-setting and dealing with wicked bouts of burnout.  And this week I received an email from him with a freaking brilliant idea about how to stay motivated towards setting - and reaching -  diabetes-related goals.

"I've had this 'pyramid' for about three months now.  Just something that I keep near my desk to keep me focused on my diabetes.  After completion of the pyramid I have no clue what I will do but some kind of celebration will be in order," he wrote, and attached a slide to his image.  And when I opened it, I was like "whoa."

He had created a pyramid of his diabetes goals.  Tangible goals - real life goals - that are both achievable and ambitious, all at once.  I thought this was so clever because it is a constant but non-threatening reminder of what diabetes goals are most top-of-mind for him.  (Also, having a celebration at the end of that pyramid completion sounds like a quality idea.  Perhaps a Fudgy the Whale?)

I've been working towards gaining better control of my diabetes (and overall health) lately, and I love the idea of something I can print out, stick to my fridge, and remain inspired by.  I liked the idea of a pyramid, but I kept picturing a huge Bingo hall in my mind, with a whole bunch of PWDs sitting at the tables with glucose tabs and bingo markers at the ready.  But the trick wasn't getting four in a row - it was filing the whole card.

I thought about my own, personal goals and created this:

Diabetes bingo.  Have at it, Google.
There are a few not-necessarily-diabetes-related goals on there (like "lose 6 pounds," which is because I'm still trying to de-flump), but there are a lot of diabetes goals that aren't unique to my particular circumstances.  Since I'm trying to emerge from some diabetes burnout, my goals aren't as tight as they were a few months ago (see also:  the slow progression from an A1C over 8 to one under 7.5).  But these are real, and I'm hoping to fill the card within six months.  :)  Thanks for the fun idea, Ryan!

What would be on your bingo card

January 27, 2011

I Can Only Use One Word?

ONE WORD!  And please use the letters S, X, C, and E in your response.A few weeks ago, the WEGO Health editorial team was hitting up the Twitterverse, asking people to finish the Tweet:  "My health in one word is _______."

My health, in one word, is VARIABLE.  As are my emotions related to it. 

Since that question was asked on a day when I was watching giant Ms and Ws dance on my Dexcom graph, I wasn't feeling empowered or particularly rah rah.  I was pissed, because despite the fact that I had woken up at the exact same time and had eaten the exact same breakfast and taken the exact same insulin dose as the day before, the results were completely different.  (One post-prandial was 146 mg/dl and the other was 288 mg/dl.  What the fern?)  So "variable" was a tamer way of expressing other "one words" I could have used, like "frustrating," "infuriating," "stressful," and "bogus." 

However, if you asked me to finish that Tweet on Monday, when I felt like I had things figured out, I would have said, "My health, in one word, is achievable."  Or "resilient." "Unflappable." "Strong."  And it makes me wonder - are these positive words I'm using to describe my health, or myself?  The negative words seem to point their wordy little fingers right at diabetes itself, but the positive ones seem to give the PWD a pat on the back.  (And rightfully so, because a day of in-range blood sugars isn't because of diabetes; it's the result of the hard work of the person with it.)

Which is why "variable" seems to be the best word to describe my health, and my life, with diabetes.  Every day includes diabetes, but not every day plays out the same way.  Some mornings, I wake up to a flatlined Dexcom and a meter reading that would make my endocrinologist dole out a shiny gold star.  But other mornings, the Dexcom is hollering at me and my endo would probably poke me with a stick and tell me to stop sleeping through high alarms.   (She's very nice, and I don't think she'd actually poke me with a stick.  Maybe she'd stick marshmallows on the end of a stick and poke me with that, which is what Chris and I have threatened to do to the cats in efforts to gently punish them.  Marshmallow punches.  Holy digression there.)

Diabetes is unpredictable.  Hard to tame.  Karen called it "complicated." Cherise called it "wacko."  It's demanding and pushy and relentless and difficult.  It's a child throwing a tantrum.  It's a lion with an attitude problem. It's ever-changing.  It's variable.  

How would you describe your health, in one word?

January 26, 2011

Joe Solowiejczyk and CWD.

Back in 2009, when I attended the Children With Diabetes "Friends for Life" conference for the first time, I had the opportunity to check out the "It's Not Just a Numbers Game" session with Joe Solowiejczyk.  It was awesome!

From that entry: 

Joe Solowiejczyk"I schedule my diabetes depression days," he said.  "I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am."  He laughed.  "After about an hour, I'm sick of it and I just want to move on with my day."

I like Joe.  I like listening to him talk and I respect him for managing diabetes for over 47 years.  I respect him for saying, "It took years for me to be able to say, 'I'm having a hard time with diabetes,' without it being a chip on my integrity."  This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness.  But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.

"You can not like it and still do it.  Hating it [diabetes] and doing it are not mutually exclusive states." 

He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way.  The possibility of a cure was mentioned.  And while many diabetics say "I'll eat the contents of an entire Crumb's Bakery," or "I'll drink orange juice FOR FUN," Joe smiled gently.   

"If there's a cure?  What will I do?  I'll sit on a park bench for three weeks and stare at the sky and do nothing."  

Joe has a video that's up on the ChildrenWithDiabetes site, and it's from that same 2009 Friends for Life session.  If you haven't had a chance to see him talk live, you can catch some of his personality and inspirational words in this video

Just watching this video again today has made me smile, and made me less frustrated with the 221 mg/dl I woke up with this morning.  Thank you again, Joe.

December 21, 2010

Tangled.

I love my insulin pump (well, as much as you can enjoy anything that's used to manage a chronic disease), and it's a constant part of my daily routine.  It goes with me EVERYWHERE, from the car to the supermarket to the bathroom and to bed at night.  This pump is never more than a few feet away from me, and I keep close tabs on it.

And sometimes it keeps wicked close tabs on me.  See also:  tangled.

Have you ever found yourself wrapped up in a pump tubing hug?

December 20, 2010

What NOT to Say to the Parent of a Kid with Diabetes.

I didn't make this video, but the fact that it quotes questions I've heard people ask the parents of children with diabetes time and time again makes me smirk.  This video is anonymous - I don't have a clue as to who crafted it up.  It's a little bit sassy.  And my goodness did I laugh when I first watched it.  The second time I watched it, I paused it to write down my favorite line.

"There are only two things my daughter cannot eat:  poison, and cookies ... made with poison."

(Note:  If someone can hook me up with this moss that supposedly cures all things that ail ya, let me know.  I'd love some in time for the holidays.)

Found out where this video was born - on Joanne's Death of a Pancreas site. Thanks for the laughs, Joanne!

December 16, 2010

Upon Diagnosis.

My diabetes alma mata - The Joslin ClinicLast week, I was at an event at Novo Nordisk in New Jersey, attending an event (more on that later) and participating in a discussion about what it's like to grow up with diabetes, and more specifically, what our actual diagnosis moments were like.

I had a chance to talk with a few kids with diabetes (much younger than me - we're talking like the 5 - 10 year old range) and their parents, separately, and what amazes me is how much information is available to the newly diagnosed these days. 

When I was diagnosed (cue stories about walking uphill both ways to get to the endo's office), there weren't any websites dedicated to the parents of children with diabetes.  There weren't blogs about all kinds of different grown ups who were living with diabetes, offering my parents a glimpse into a life after diagnosis.  The books about diabetes were limited to those of the cooking variety, and mostly dealing with diabetes that was controlled by diet and exercise.  Google wasn't an information option, and the only resources we had were people who had older aunts and uncles who had "a touch of the sugar." 

When the diagnosis call came in for my parents, we barely knew what diabetes was, never mind how to live with it.

I listened as the kids in this session talked about what kind of information their doctors gave them upon diagnosis.  "We got a book?  And we went home with needles but then I got my pump so we don't use the needles anymore."

These kids had a very different diagnosis experience than I did.  Most were on pumps within a year of their diagnosis, and web resources kept their parents tuned in to the latest diabetes developments and research.   They were in and out of the hospital within two or three days time, compared to my two 12-day hospital stays back in 1986.

For some of you guys who are reading this, you may have been diagnosed a while ago, like me.  Or you might be newer to the diabetes experience, or handing this disease on behalf of a loved one.  What information would you have wanted upon diagnosis?  How has the diabetes blogosphere changed the way we all feel about our diabetes?   I thought about the resources available to my mom and dad.  Like that bright red book we received from Joslin that had all the meal management tools available in the mid-80's, and that chapter in the back about complications and blood sugar goals.  I wonder how different my care would have been, and my life as a result, if I had received more information about connecting with other diabetics, and forming a community of emotional support for myself. 

So much has changed since I sat in the endocrinologist's office at Joslin back in the day.  

"How many of you guys had to practice injections on an orange before you tried the needle on yourself?" I asked the room of kids, and they looked at me blankly. 

"An orange?"  a sweet little five year old girl asked.  "Nah, we used fake skin."

Fake skin.  Well I'll be.

December 10, 2010

The Santa Conundrum: Santabetes?

(Note:  This post contains spoilers.  If you are like my girl Brittany and you believe happily in the story of Santa, skip down to where it says "Diabetes is like Santa Claus.")

My husband and I share a philosophy on Santa Claus.  

Santa gets too much credit.  Why should Santa get all the glory for the gifts that show up underneath the Christmas tree on Christmas morning?  Mom and Dad work their tails off to provide a fun and comfortable life for our child, and to have the fun thunder (funder?) stolen by Santa Claus is unfair.  "Thank you, Santa, for the Barbie and the Rockers van!"  I shouted as a kid, not realizing that Mom and Dad put in some extra hours (and spent half the night assembling the stupid thing) to get that Rocker Van under our Christmas tree. 

So BSparl will be fed the Santa story, but she'll also understand that her Christmas gifts come mostly from her parents, and not from a fictional cookie thief who shimmies down the chimney.  Santa doesn't work as hard as we do, so he shouldn't get all the credit.

Diabetes is like Santa Claus.  (Welcome back, Brittany!)  Only in this case, it SHOULD be the one given most of the credit for certain things.  And I shouldn't give myself so much of the blame and guilt.  I have a tendency to look at a blood sugar reading and instantly blame myself for it. 

"Oh, 236 mg/dl.  Great.  What did I do?"  And then I start musing about what I may have eaten or if I under-bolused.  Same guilt for a low.  Same reaction for any number that may be deemed "bad."

Only it's not my fault.  Even if I did overeat or over-bolus.  It's the fault of diabetes.  I can't assume all the blame for the effects of this disease because there is plenty that is out of my control.  I can count carbs and test often and make use of all the technology and medical advancements available to me, but when things go awry, I can't sit around and blame myself.

Last week, I was talking to some parents about "good" and "bad" diabetes numbers.  And I hate nothing more than assigning such adjectives to a moving target like a blood sugar number.  236 mg/dl isn't "bad."  It's out of range.  100 mg/dl isn't "good," but just in range. 

Holiday photos.  :)

It took me a very, very long time to not see my meter results as something I should feel badly about.  Growing up with diabetes, everything was tagged with either "good" or "bad."  But I can't carry that kind of guilt.  By blaming diabetes for these fluctuations, I'm able to remove myself from the guilt cycle, and move on faster from an out of range number.   Diabetes is to blame for my body's inability to maintain a consistent blood sugar.  This kind of "Santabetes" viewpoint is not an excuse for me to slack off, but the detachment makes it easier to bounce back from a tougher diabetes day.  I can't blame myself for everything - that's not productive or mentally healthy.  My job is to do my absolute best to keep things in range with the help of the tools and education I have at my disposal.

And, like Santa Claus, diabetes isn't going to get all the credit for the good stuff, too.  When my A1C was at the Nice Healthy Baby Range, I didn't give the nod to diabetes for being easy on me.  It was the result of my hard work against a pain in the ass disease.  Go ahead and take all the credit for the tough stuff, Diabetes.  I'm not owning that part of it.  I'm just going to keep looking ahead and taking one day of diabetes at a time.

... and mentally prepare myself for the Christmases to come, when I'll be up all night assembling whatever goofy gift is on my daughter's list.  ;) 

December 08, 2010

Helping Out Diabetes Camps.

I loved diabetes camp.  Actually, that should be in present tense because I continue to love diabetes camp, even though I'm not a camper anymore.  Attending Clara Barton Camp for those five summers changed the way I looked at life with diabetes, and my health has always been better for it.

But I've talked about camp before.  I'd love to play a role in sending other kids to diabetes camp.  And thankfully, we as a community now have that chance.

The Diabetes Education and Camping Association (DECA) is in the running to win one of the Pepsi Refreshment Project grants.  If they earn one, they'll use their winnings to send kids to diabetes camps and will also arm them with digital filmmaking skills so that the campers can chronicle their experiences with type 1 diabetes.  As a diabetes camp alum, a patient advocate, and the wife of a filmmaker, I think this is a fantastic idea.


You can vote either by voting for "dStory" on the Refresh Everything page, or you can text 104696 to Pepsi (73774).  (I'd guess that standard texting rates apply, but I'm not sure.  Double check me on that.)  Either way, you can vote once a day, every day in December.

For those of you who went to camp and it made a difference in your life, please vote.  And if you didn't have a chance to attend a diabetes camp, just think about the possibility that you could help send a child to camp just by voting.  

Thanks for your help, and here's hoping DECA wins!!

Gaining Diabetes Independence.

Bridging the gap between being a child with diabetes and being an adult with diabetes.I spent some time with some parents of kids with diabetes this week (more on that in short bit), but part of what we talked about was that transition between being a "child with diabetes" to an "adult with diabetes."  

One of the biggest milestones for me as a transitioning child was earning my driver's license.  I wanted to drive more than anything else.  I wanted that freedom and that ability to go where I wanted and when I wanted, without that awkward "waiting for mom to pick me up" moment.  But my parents and I talked about how driving with diabetes was a huge responsibility, and it was completely understood that if I screwed with my diabetes management intentionally, the car keys wouldn't be resting in my hot little hand.  As I matured and got adjusted to the constantly shifting levels of responsibility that were required of me, the torch of diabetes responsibility started becoming more and more predominantly MINE.  

Abby talked with a few people with diabetes in her community about making that jump from "under parents' care exclusively" to taking ownership.  The responses were varied, which made me wonder how different this transition is, family-to-family:

Ashley Napear  (22 years old, 18 years with diabetes)
I know for me growing up, my doctor told me that I was not allowed to have an insulin pump until I could take care of my diabetes which meant me doing everything. I know this is different now because pumps are being given to kids at younger ages, but this is how it happened for me

Dylan Hoots (18 years old, 8 years with diabetes)
I know that when I reached a certain age ... even as young as fourteen, I unintentionally may have pushed my parents away from taking care of me because in the back of my mind I wanted to be self reliant and be able to take care of the disease on my own, however, through that they eventually never asked me about it and it led to a lot of burnout. But I think every kid wants to be independent; it's especially different for children with diabetes because it can be such a dangerous disease.

Amanda Devens (20 years old, 14 years with diabetes)

It was a sort of process, slowly I started to realize that I needed to do it on my own, pricking my finger, then taking shots, and then pump sites. Because well there was one day when I was at school - my mother used to show up and prick my finger because I was too scared to - but this day she didn't show up, and I knew it had to be done, and so I did it. And realized that it wasn't really THAT bad! :)

Alissa Carberry (20 years old, 11 years with diabetes)
It was definitely a process- started slowly and it picked up. I was diagnosed when I was 9 and initially let my parents do EVERYTHING- but within a few years I realized I couldn't hang out with my friends or do any "normal things" that an eleven or twelve year old girl wanted to do because of the struggles of giving injections and carb-counting. My parents and I would work out ways to ease out of my dependency, such as me checking my sugars and carb counting on my own, but I had to tell them so that they could log it. Eventually I started doing everything and loved the independence that went with it, only when I went through burnout periods did they help or when I was ketonic (essentially when I hit a roadblock or diafails occurred) Once I went on the pump I was self sufficient … my dad still tells me that he has NO idea how to work my pump!

Melissa Moulton (20 years old, 10 years with diabetes)
For me it was a slow, gradual transition process. I went from my parents sending me on my way with pre-filled NPH/Regualar syringes, to leaving a filled Minimed 508 reservoir on the counter for me, to my mom occasionally scrolling though the numbers on my meter, to complete independence. It was definitely a give and take process, with me taking on more than I should have at times, and trying to push my parents away and them trying to take my diabetes back into their control. But hey, ten years later I'm doing just fine, so I think something in there went right :)

Alicia Miller (20 years old, 8 years with diabetes)
Diabetes was a bit of a shock to my growing up. I wasn't diagnosed until I was 12, so I wasn't really able to progress into my teen years and puberty until I had gained back the weight that DKA had taken from me. It was rather quick for me, I was giving myself shots within two months of my diagnosis (I had wanted to go to a sleepover and wouldn't be allowed if I wasn't doing them myself) and was on a pump within two years. I'm still adjusting to having diabetes in my life. I have gone from middle school, to high school, and now to college and traveling with it. I am still questioned with what I am doing when it comes to checking my blood sugars, pumping and using my sensor. My parents have always helped as much as I allowed them to, which wasn't much since I have been incredibly independent when it comes to my diabetes. I went to school, stayed after and hung out with friends, clubs etc. like everyone else because my parents trusted me, and my control and dedication to controlling my disease. I may not always have "perfect" blood sugars but I have managed to lower my AIC, keep my eyes in good shape and travel abroad without major issues with my diabetes.

Bethany Kinsey (23 years old, 18 years with diabetes)
For me it was more a psychological struggle of wills. Having had diabetes since the age of 5, things typically go one of two ways: either you don't learn to make the disease your own until college or some other cataclysmic event in life or you want full control by age 12. I preferred the latter of the two. I am generally a very independent person with everything I take on, so why not diabetes as well? However, my mom and I fought for years about my control-sadly, she and I handle stress and arguments very differently, so neither one of us were able to realize what the other person was going through until retrospect allowed us to see 20/20. I recommend taking baby steps instead of diving head first into the deep end as a pre teen/early teen. Diabetes is a BIG deal. Take all of the help you can get - just don't let that help smother you.

Abby Bayer (22 years old, 12 years with diabetes)
My mom never had much to do with the actually diabetes part, about 3 days after I got home from the hospital I was doing my own injections, carb counting, etc.  I was almost 11 years old and was not about to have my mother running my life (and she wouldn't let me sleep at friends houses until I proved myself).  The biggest transition that I'm still struggling with is the paperwork side.  Insurance companies hate me, and aren't shy about telling me so. Sometimes I'll get 2 shipments of insulin when I only wanted one, and then they won't send me more when I ask for it. I have about 5 boxes the size of a small house in my basement filled with expired strips and lancets because the company was sending me far too many without me asking. It's a hassle, and until I get my own insurance and have the whole situation under control, I'm going to rely on my mother to fight with those people in who-knows-where about what they think I really need.

When did you start taking control of your own diabetes?  And this question isn't just about children becoming adults.  This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit.  Taking ownership of diabetes isn't limited to kids who are growing up. 

When did you start to gain your diabetes independence?

December 07, 2010

Guest Post: Facebook Isn't Just About Tending Your Crops.

Manny Hernandez isn't just a "friend" on Facebook; he's my friend in "real life," too.  I've always admired his dedication to improving the lives of people with diabetes, and how he uses social media to bridge the gaps between diabetic communities.  Which is why I'm very happy to have him guest posting here today about his Facebook diabetes management game, HealthSeeker.

*   *   *
 
Manny Hernandez and his hatOn Facebook, You Can Also Play to Manage Your Diabetes!
Let’s face it: Facebook is a giant. More than 550 million people in the world use it for keeping up with friends and family, to stay informed, and to be entertained.

At the end of 2009, seeing this trend and realizing how many people on Facebook were playing so-called social games (FarmVille is just one example of these), at the Diabetes Hands Foundation (DHF) we thought we should develop a game on Facebook to help with diabetes management.

With the sponsorship of Boehringer Ingelheim Pharmaceuticals and in collaboration with Boston-based Joslin Diabetes Center, we began to shape  a new game called HealthSeeker. The game saw the light of day in June 2010, when it was launched in English at www.healthSeekerGame.org. The game was launched in Spanish during the month of November (si quieres jugar HealthSeeker en Español visita www.ExplorandoTuSalud.org).

HealthSeeker offers players suggestions to help them improve their lifestyle and nutrition, to better manage diabetes. As a player, you can invite your Facebook friends (actually, it is more fun to play alongside them): they can become sources of inspiration and motivation as you move through levels.

The game tackles two of the risk factors associated with the incidence of type 2 diabetes (though people with type 1 diabetes and all people who simply want to live a healthier life can benefit from it too): the lack of physical activity and the not-so-healthy eating habits we sometimes exhibit.

How does HealthSeeker work?
The game motivates players to take on simple daily challenges, such as switching from wheat to white bread or walking around the block after lunch, in order to help them reach their lifestyle goals.

The lifestyle goals include healthier eating, reaching an optimal weight, improve your diabetes management and reducing the risks of heart problems. HealthSeeker, the diabetes management Facebook game!

The game contains missions and actions that the participants choose. These need to be completed in order to progress. The vast majority of the actions are completed in real life, not in front of the computer. This makes sense considering that we don’t really burn too many calories when we’re not moving anything but our fingers on the keyboard. :)

As players complete actions and return to the game to inform about their progress, they receive awards and points for their achievements and their Facebook friends can give them kudos. Players can also share their accomplishments on their Facebook wall, through Twitter or challenge their friends complete the same missions and actions. This is part of the viral character of the game and is what makes it that much more fun to play alongside your Facebook friends.

As of today, more than 5,000 people are playing HealthSeeker and we look forward to receiving more players. The game is available free of charge, in English at www.HealthSeekerGame.org (en español a través de www.ExplorandoTuSalud.org)

I look forward to seeing you and your Facbeook friends playing soon to take simple steps to get healthier together!

*   *   *

Manny Hernandez (@askmanny) is a nonprofit executive, social media author, and consultant and a diabetes advocate. He is the President of the Diabetes Hands Foundation (DHF) and the founder of www.TuDiabetes.org (in English) and www.EsTuDiabetes.org (in Spanish).


November 29, 2010

Late: Special Sib of a D-Kid Day.

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

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

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

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

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

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

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

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

November 16, 2010

Diabetes Gets All Social.

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

- The Social Method for Diabetes Care

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

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

November 15, 2010

Participating in JDRF's Type 1 Talk.

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

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

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

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


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

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

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

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

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

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

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

November 11, 2010

Parking Lot Lows.

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

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

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

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

"Am I getting old?"  I asked BSparl.

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

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

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

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

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

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

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

"You okay?"  he asked.

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

This poor kid must have thought I was on drugs.

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

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

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

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

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

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

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

November 10, 2010

Type 1 Talk: Get Involved!

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

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

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

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

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

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

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

November 09, 2010

D-Blog Day: Six Things on SixUntilMe.

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

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

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

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

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

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

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

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

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

November 04, 2010

Be Part of the Cure.

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

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

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

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

Be part of the Cure!

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

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

November 02, 2010

The Big Blue Test.

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

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

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

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

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

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

November 01, 2010

First Walk.

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

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

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

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

Kid cracks me up.

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

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

October 27, 2010

The Big, Bad Wolf.

Yesterday, I was up in Boston proper for a meeting of health activists from the WEGO Health community, brought together as part of a panel of patients who were willing to share their perspectives with Pharma.  My fellow panelists - Alicia Staley, Rosalind Jaffe, and the diabetes community's own Karen of Bitter-Sweet Diabetes - and I talked with a group of representatives from Pharma who had questions about getting involved in the social media space.  (Did you know Pharma wants "in" on the social media space?  Can you tell?)

The WEGO Health Socialpalooza panelists and moderators
Kerri Sparling, Rosalind Jaffe, Jack Barrette, Karen, Alicia Staley, and Bob Brooks. 
(This is the happy photo. And because they all humor me, here's the serious one and the goofy one.)

The discussions were extensive, and we talked openly about what we, as patients, thought Pharma was doing "right" and then our opinions on what was missing from the social equation.  The WEGO Health moderators provided a few questions to the panelists prior to the panel, and my answers were sent off a few days earlier, while BSparl was taking a nap. (Which means I was too exhausted to craft up fancy answers and instead blurted out knee-jerk responses, which were included verbatim in the slides.  Which makes me reconsider using the "draft" option of my email to preserve mine and everyone else's sanity.) 

Here are the questions we were sent, and my answers:

What rules of the road should companies follow when they engage your communities online?

  • Always be authentic (aka don't be a big, fat liar)
  • Do not judge the actions of online communities (see also:  "Diabetes Police*")
  • Contribute to the conversation, don't just try to sell us stuff
  • Don't fear the blogosphere:  Show us your face!

What health or pharma company social media efforts are resonating with your community online? [I don't speak for "the community," so I instead listed efforts that resonated for me, personally.]

What would you tell companies to encourage them to support your communities online?

You need us.  In so many ways.  So come talk to us.  We want to hear from you.  Also, bring cookies (And with this slide, the WEGO crew had included a photo of some lovely chocolate chip cookies.  I appreciate being humored.  I also love cookies.)

Pharma isn't the big, bad wolf.  The industry as a whole gets a bad rap because there are some dodgy apples in the bunch that ruin Pharma's overall image.  I think that same principle applies to just about everything (there are always jerkfaces in certain groups).  I think that Pharma companies attending events in effort to engage with patients is a good thing. 

"But they only want to profit off our disease.  They want to tap us because they make money off us." 

Good point.  But while that is true on some levels, it's also true that just having them in the room with us is a start.  Because if they're in the room, they can hear us. And if they hear us, they just may start to listen.  

And damnit, there is a chance of cookies.

*  I hate being policed, especially by people who don't know me.  I can take criticism well, and constructively, but I do realize there is a certain risk that comes with putting my personal health information out there for all to see and analyze.  That kind of disclosure opens me up to a lot of scrutiny and judgment.  Part of what I wanted to convey to the attendees of this discussion was that judging people within these communities is a crap idea.  Unless they know what it's like to live with these illnesses, don't just pop in and make disease management suggestions or judgments.  And definitely don't jump in and try to link to your products.  Support and accurate information go a very long way in making a difference in our health and lives.  Don't rag on the diabetic who clamors for cookies.  ;)

October 21, 2010

Look Forward to Today.

We stand together, even when things get really tough.Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

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

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

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

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

Dead-in-bed is the exception.

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

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

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

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, we're all we've got.

October 15, 2010

Vegas Meet Ups!

Since I arrived here in Las Vegas on Wednesday morning, it's been a revolving door of some of my favorite people in the medical blogosphere.  And it makes perfect sense, since this is the BlogWorldExpo conference and the Mandalay Bay is teeming with bloggers.  Thanks to the Social Health track that ran yesterday (much more on that tomorrow), I've had the pleasure of meeting up with plenty of familiar faces.

There is so much to tell, and so much information to relay, but for now, I'm going to rely on the power of pictures (because this three hour time difference is seriously kicking my productive rear):

Taking a break between tracks.
Scott Johnson, Jenni Prokopy, Amy Tenderich, Kerri Sparling, and Manny Hernandez

Scott is our bodyguard.
Mollie Singer, Kerri Sparling, Scott Johnson, Jenni Prokopy, and Jackie Singer

They say that what happens in Vegas stays in Vegas, but I'm excited to share all the stories with everyone ... once I have a nap, that is.

(And, total sidenote - Happy Birthday to my little sister today!)

October 05, 2010

Change Just One Thing.

If diabetes were a goldfish, I'd flush that little sucker.Recently, I was asked to answer a few questions for a company that was looking to better understand people with diabetes.  I expected a list of questions ranging from "What color meter do you prefer?" to "List all medications you are taking to treat your diabetes, and why." 

Instead, the questions were more touchy-feely than I had anticipated.  And a few of them were hard to answer.  The one I struggled most with was "If you could change one thing about living with diabetes, what would it be?"

My first response was to shrug.  "Everything?  I'd change everything?" 

Then I regrouped a bit.  But still, an answer wasn't jumping into my head as easily as it had for the prior questions.  Somehow, "What or who serves as your motivation or inspiration?" was much easier.  

I'm only guessing, but I think if diabetes comes into your life when you are older, there's a distinct "before" and "after" to your life timeline.  You remember when insulin injections or pumps or glucose meters weren't part of the equation.  You know what it's like to drink juice purely for pleasure.  You have a sense of what you're missing, of what's changed.  I'd imagine that concept makes a diagnosis both easier and infinitely harder, on so many levels.

Diagnosed as a kid, I don't have many pre-diabetes memories at all.  I'm not feel sorry for myself, but it's just a fact.  I don't remember life without any of this medical stuff, and there is no "before."  Just "after."  Only the after part isn't this big dramatic change - it's just "life."

So when asked what I'd change about living with diabetes, I don't have enough life without it to lay claim to a quality answer. I don't give a lot of thought to the meters or the pumps or all the physical trappings of diabetes.  I don't mind because I don't know any differently. 

But I wish I could lessen the emotional impact of diabetes on my life, and on the lives of the people I love.  I wish diabetes wasn't such a fickle mess, and that my mother could safely assume that I'll wake up just fine every morning.  And that my husband wouldn't view the Dexcom as his safety net when he travels without me.  And that I wouldn't have seeds of concern when I'm alone with my daughter.  I wish this stupid disease didn't come with so much worry, and I really would love to change how that worry bleeds into the lives of my loved ones.

If I could tie diabetes to a balloon and let it soar out of my life, I totally would.  If I could flush it down the toilet like a goldfish, I'd do that, too.  I'd let a bear maul it.  I'd allow my diabetes to stick a fork into a plugged in toaster.  And if I had the opportunity to shove it in a microwave like a Peep at Easter, I'd do it in a second.  I'm not a fan of this disease, especially when it makes people worry. 

So I guess my first response was sort of right.  "I'd change everything." ... only I'd add balloons, microwaves, and bears.  ;)

If you could change one thing about your life with diabetes, what would it be?

September 30, 2010

ePatient 2010: Are You One?

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I've written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I'm still comfortable with the term "ePatient."  I find it to be empowering - another "e" word - and having it as part of my identity makes me feel like I'm part of a very strong, very forward-thinking community.  Having lived with diabetes for ... forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it's part of my health."  Empowered, electronic, encouraged, engaged ... ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health - or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

September 29, 2010

Philadelphia Diabetes Meet Up.

Conferences are a good time and a great networking opportunity, but there's NOTHING like hanging out with fellow PWDs (and PWD caregivers). 

Hanging out with fellow diabetics (and their caregivers) in Philly!

Thanks for coming out last night, everyone!  It was awesome!!!

September 27, 2010

How Do You Advocate When You Feel Like a Schlepper?

(Post title edited, thanks to input from @kelsse.  :) )  I had a conversation with a fellow PWD a few weeks ago.  She was leading a support group for younger girls with diabetes, but she was having some trouble feeling in control of her own diabetes.

"I've been like 260 all day long.  It's hard to feel like a good role model when you're in such crap control.  I don't feel like a very good advocate these days."

And her comment stuck in my head and rolled around in there like a bingo ball for about two months.  This morning, as I was testing my blood sugar before heading downstairs to make a bottle for the BSparl biscuit, it dawned on me that her question is probably one that every patient blogger struggles with at any given time.  How do you put on a brave face when you feel like your disease management is in a tough spot?  How do you tell people to take control of their own diabetes when yours is roaming around unsupervised?  How do you advocate when you feel like a schlep?

For the last week and a half, I have been a walking diabetes disaster.  I'm still wearing the pump and the Dexcom and I'm aware of my disease, but I'm not managing it.  It's managing the hell out of me, though.  I'm not proactively nailing down any blood sugar trends, but instead am chasing random highs and lows that I KNOW have a pattern somehow, but I haven't motivated myself to really plot the numbers and find their rhythm.  I can count my daily finger sticks on one hand (pun sort of intended).  Overall, I'm treading water instead of making real progress towards actually making changes.

How many times can I say "Tomorrow is a new day"?  I feel like I've been singing the same tune for weeks now.  Is this a patch of diabetes burnout, brought on by diabetes obsessiveness in pursuit of the healthy pregnancy?  Whatever it is, I'm definitely in it and having a very hard time getting myself out.  The problem is priorities.  I have myself fooled into thinking that taking care of the baby, unpacking the house, and continuing my consulting work is more important than diabetes management.  What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn't ever as well done as it should be.  My health needs to come first.  Not last.  Or second to last.  Or finishing somewhere in the bottom five. 

It's hard to come online and admit these things.  I wish I could say that I had the baby and then bounced right back into fantastic control and excellent health.  But I'm struggling.  A lot. It's frustrating and I'm overwhelmed.  I don't make a habit of lying to you guys.  So even though I am trying to make changes, I'm feeling challenged. 

"I don't feel like a very good advocate these days," my friend had said that day.  But what makes her a good advocate is that she tries.  Every day.  And that's what makes the entire diabetes online community such a strong and honest source of support.  It's not comprised of a bunch of people with "104 mg/dl" winking back at them on their meters and a plate of chicken breast and baby spinach leaves smiling in low-carb contentment.  We're a bunch of real people writing about our real experiences with this disease.  And I'm so glad for that because I'm looking at string of several rotten diabetes days in a row, all lending themselves to settling in my brain and making me feel defeated.

You guys make it easier to dust myself off and get back on the wagon.  (Even though it is speeding by like the Acela.)  It's hard to advocate when you feel like a schlep, but it does feel good to be honest.  Honesty helps fuel advocacy.  And it also helps to be supported by people who really get it.  When this community helps lift us out of our respective diabetes burnout phases, it makes all the difference. 

... coffee helps, too.  ;)

Coffee does help.  A lot.  Like a freaking ton, actually.

September 15, 2010

TCOYD Providence: Recap.

I couldn't have thought of a better way to spend my 24th diabetes anniversary than at a Taking Control of Your Diabetes conference in my home state of Rhode Island - and with a bunch of diabetes buddies, to boot!

Saturday dawned bright and early as I headed to Providence for the conference (though not as bright and early as it did for Karen, who was on the road at like six in the morning - she's hardcore!).  Immediately, I ran into Karen and her smiling husband Pete, and then we stumbled into everyone else at the exhibit hall.  

Chicas of the diabetes blogosphere!
Ashley, Faye, myself, Tina, Karen, Stacey, and Val

Kelly Close, Kerri Sparling, and Bernard Farrell
Kelly Close, me, and Bernard made it, too.   (Better late than never!!)

While sessions were interesting and the discussions were lively, the highlight of this conference was the lunchtime speech given by Urban Miyares, a Vietnam veteran who has been living with diabetes since he was 19 years old.  Diagnosed after losing 67 pounds in two weeks and then collapsing on the battlefield in a diabetic coma, Urban was sent home to adjust to his diagnosis.  

Yes, you read that correctly.  He was invited to join the Paralympic team as a downhill skier, and not only did he join, but he won.  Many times.  "But not at first.  My rear end was frozen that first winter, from sitting on the snow so much." 

I couldn't believe how much Urban had been through, and how much of his body had been compromised as a result of diabetes (complications exacerbated by the Agent Orange chemical he was exposed to during the war, his doctors suspect), yet he was up there making jokes.  And laughing.  



Diabetes makes an inconvenient mess of a lot of things - how much we have to travel with on a regular basis, how often we are lancing our fingertips or poking ourselves with infusion sets or syringes, how many doctor's appointments we have and the lows and the highs of both our blood sugars and our emotions … but there are some very ugly complications that come as a result of this disease.  It's not all rainbows and unicorns and invisible disease.  Sometimes, this disease is very visible.  

And sometimes you meet someone who has experienced so much of the worst this disease has to offer.  And you wonder how you would handle it, if it were to happen to you.

But losing your sense of humor isn't a side effect of diabetes.  Losing your ability to find the good in your life and to grasp on to it with both hands isn't a side effect.  And neither is your ability to inspire.  So thank you, Urban, for showing us that even when you've lost your sight, you haven't lost your ability to help us see what life is all about - laughter and love.

And thanks to TCOYD for such a great event!!

September 10, 2010

24 Years.

Tomorrow is my 24th anniversary with type 1 diabetes. 

There's a lot I can say about the diabetes community, and how far things have come in the last twenty four years.  How what was once a disease that left me feeling alone and obscure now comes with a welcome bag and a community of people who can lift your chin when it sinks to your chest.  I thought about how many people I knew with diabetes on the day of my diagnosis (one) and how many I know today (far more than I can count).  

I am grateful for all of these things.  

Some years I want to celebrate another year marked with diabetes.  Sometimes I feel defiant, like I just poked diabetes in the chest and told it what's what.  Some years I want to keep to myself, feeling a little jumbled at the thought of so many years with this disease.  And some years I'm a combination of all sorts of feelings, just wanting my husband to give me a hug and have a bite of Fudgy the Whale with me.

Last night, I felt different.  This year's anniversary feels different.  Maybe because there's been so much change in the last year.  Maybe because this day could come and go unnoticed, because an anniversary with diabetes doesn't change the diagnosis.  Doesn't make my health any better or worse.  It's just another box I can check, another year that I can say, "Yes.  I've been at this a long time."  Maybe it's because I will wake up tomorrow and it will still be here, despite these promised cures.  Maybe because I've moved into a brand new place but still have boxes marked "diabetes supplies."  As I unpacked, I reached the bottom of a bin of clothes and found a used test strip and I couldn't even tell what kind of meter it went it, it was so old, and that made me so sad for some reason.   

I tried on a few dresses in preparation for our trip to the Toronto Film Festival and felt upset that my post-pregnancy body still felt so unfamiliar, and that the pump seemed the size of a coffeemaker as I tried to hide it in my fancy garb.  Frustration mounted, and I felt like I was swallowing a scream.  I needed a hug. 

I went into my daughter's room, where she was asleep in her crib.  Her arms above her head, in her 'sleep victory' position.  Her breathing was even and steady, and she wrinkled her nose and rubbed her fist against her cheek as the floors yawned in response to my footsteps.  

Diabetes doesn't define me, but my daughter does. 

I scooped her up without thinking and held her close.  She cuddled close to me, resting her head against my neck and I stood there and felt ridiculous because I just wanted to cry, I was so proud of her.  And so in love with her.  And I realized that what had changed was everything.

Twenty four years with type 1 diabetes is a good chunk of time, but I'm not done yet.  It will be with me when we celebrate Chris's film next week, when we walk with our friends and family for a cure at the end of October, and when we have breakfast together tomorrow morning.

Diabetes is always there.  But it's not me.  It will never, ever be the core of me. Not if I have it for a 100 years.

24 years with diabetes

September 07, 2010

TCOYD: Providence!

I'm excited to TC.When I saw "Providence, RI" on the list of cities for the 2010 Taking Control of Your Diabetes conference, I thought it was a typo. 

"Rhode Island?  Who picks Rhode Island for a conference location?"  Pause, and then a grin. "Smart people."

Because Rhode Island is awesome.  (Note:  Born and raised in Rhode Island, I'm a little biased.)  A very short drive from Boston, MA and a decent but doable drive from NYC, my home state makes for a great place to kick off the fall conference season for TCOYD.  

So what are you doing on Saturday, September 11?  I'll be at TCOYD, hanging out at the health fair and attending as many sessions as I can.  I'll also be marking my 24th year with type 1 diabetes that day, and I'm excited to spend my diabetes anniversary at such an inspiring event.  Not a bad way to spend the day. 

If you're in the New England area, give some thought to registering today for the TCOYD conference in Providence.  If you register before tomorrow at noon, you'll score the early bird registration fee of $25.  (It goes up to $30 if you register at the door, so it's a good idea to get involved early!)  And if you're planning on attending, let me know!  I'm excited to meet you!

September 06, 2010

Diabetes Art Day: What If You Missed It?

Diabetes Art Day took place this past September 1st, and so many members of the diabetes online community tapped their inner artists for inspiration.  But what if you missed the day?  Can you still get your art on?

Visit Lee Ann's blog, The Butter Compartment, for more details on Diabetes Art Day and to view some of the submissions! And if you're looking for a labor of love this Labor Day, bust out your crayons (or your Photoshop) and see what you can create!

September 02, 2010

Diabetes and Moving: Fun.

Every time I look at this bit of clip art, I picture the cats driving it.You know you're a diabetic moving into a new place when:

  • You pack extra glucose meter test strips, baby diapers, and toilet paper into the same box because you know you will need both on the first day.
  • You're watching at the window for the cable guy so you can get yourself back online and immersed in the diabetes blogosphere.
  • You don't care that there's an ice maker in the new fridge, but more than there's a handy compartment that's PERFECT for insulin storage.
  • There's a whole box labeled "Diabetes Supplies."
  • You're grateful that the hardwoods are being installed because it will be easier to find rogue test strips.
  • The washer dryer combo looks like a spaceship command unit and you have no idea how to work it.  (Wait, that's just me?  Domestic goddess I am not.)
  • Even though the fridge is almost entirely empty, there's still a bottle of grape juice at the ready.  (And a pitcher of iced coffee.  Priorities!!)
  • You buy a smaller garbage can for the kitchen to leave room under the sink for a massive, red sharps container.
  • There's a space in the walk-in closet that's dedicated solely to stacking insets, insulin reservoirs, and test strip bottles.  Not to mention lancets, which I've had the same seven boxes for the last four years and I never manage to use them up.  (Something tells me I should change my lancet today.) 
  • And: You test the wall outlets by plugging the Dexcom receiver in to charge.
Diabetes plus moving totally equals fun.  :p

August 24, 2010

What is the Best Motivator?

I've heard that fear is a pretty good motivator.  Over my two plus decades with diabetes, I've heard the "fear tactic" from many medical professionals.  Actual statements:  "Make sure you test or your eyes will become diseased and you'll go blind." And "If you don't take care of yourself, you'll lose a leg when you're older."  And of course, "If you eat that, you'll end up with complications and then you'll have to live with that."  (see also:  ugh)

Fear has never been a good motivator for me.  When I'm scared, I have a tendency to hole up and hide.  When I think about the future of my diabetes, I know there is a good chance I will have some kind of complication. I have sat in the endocrinologist's office far too many times to tune out the threat of "what might happen."  I know what could be brewing.  Like it or not, I understand the effects of unmanaged diabetes.  I work hard to manage diabetes.  But I'm not so hot with managing the fear.

And if, for even a second, I forgot what diabetes complications may be waiting in the wings, I have many things to remind me.  Like the pamphlets at doctor's offices.  And the commercials on TV.  And videos about how diabetes can cost you a leg.  

That video makes me so frustrated because if I had seen it before the diabetes online community had bloomed, I would have been so distressed.  The images in that video would have haunted me, but not in a way that would impact my diabetes favorably.  That kind of video makes me want to stick my head in the sand and pretend it's not happening, instead of taking charge and control of my own disease and realizing I have the ability to impact my future health TODAY.

Give me hope any day.

I think it's more important to remember that there is a good chance I WON'T have some kind of diabetes-related complication. That some combination of good care and good support and good luck (yes, I think some of it is just plain luck) will usher me into my later years without a scary complication. Fear is not the best motivator for me - hope is far more effective.  I hope to be healthy for a long time.  And it's hope that keeps me testing my blood sugar every morning, working with my doctor to best-manage diabetes, and monitoring this monster closely. I don't want images of amputation flashing in front of my eyes every time I go to grab my meter.  I'd rather think about blowing out the candles on my 75th birthday party, a strong and healthy old bird.

Fear?  No thanks.  Give me hope any day.

August 19, 2010

Artsy Fartsy.

Crayons.  Markers.  Colored pencils.  My childhood was spent coloring and drawing on papers, walls, books, and the occasional cat.  (When you have a calico, everything blends beautifully.)  Artistic expression for me, as kiddo, was so important to my mental health, even though I'm sure it came at the cost of my mother's mental health.  (She had to clean off the walls now and again.) 

Get your art on!There's something so therapeutic about art, whether you color in the lines or all over the place.  It feels good to express yourself artistically.  I have some friends whose paintings look like photographs, and ones whose photos look like beautiful watercolors.  Their talent amazes me, and I envy it.

Because I am not artsy fartsy.  I wish I was.  I can't draw or paint of sculpt up anything remotely recognizable.  But thankfully, being "artsy fartsy" isn't limited to the classically talented.  You can let you art out by means of crayons, or sticking googly eyes on mustard jars, or creating a log cabin out of old glucose vials.

Which brings me to the point of this post:  Diabetes Art Day.  September 1st has been deemed Diabetes Art Day by the diabetes online community's resident art therapist, Lee Ann Thill.  Here are the details, courtesy of Lee Ann's blog post:

"I’m asking you to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. I’m sure most of you don’t consider yourselves artists, but I think that you are, and just haven’t discovered it yet. Then, once your masterpiece is complete, post it on September 1st. If you want to get your family involved, maybe each of you can create something, or you can even do a group art project. The possibilities are endless if you use your imagination!"

Even though my talent is limited, I'm very excited to participate in this advocacy effort.  And I can't wait to see what everyone submits for September 1st!

(For more details, please visit Lee Ann's post on Diabetes Art Day.)

August 05, 2010

BSparl and Her Mommy in Diabetes Forecast.

We both love purple.   Can you tell?Babies, babies, everywhere!  In particular, there are babies in this month's issue of Diabetes Forecast, with a focus on pre-existing diabetes and pregnancy.  I'm very proud that BSparl and I had the opportunity to share our story with the Forecast readers, and that the photographer who visited our home wasn't too bothered by the cat hair.

(One quick note after reading through the "Guide to Pregnancy" article in the magazine:  Diabetes is tough. We know that.  Diabetes and pregnancy is tough, amplified.  But don't let the long article about "what could happen" sway you if you are planning to pursue a pregnancy and you have diabetes.  The information in that article is important, accurate, but can admittedly be overwhelming.  Not all diabetic pregnancies encounter the same kinds of complications that mine did - everyone's experiences vary.  Just know that information overload comes with any pregnancy, and diabetic ones are no exception.  We may get some added bonus worries, but the end result of our pregnancies can be just the same as the pregnancies of non-diabetic women:  a healthy baby.  Take all of the information you read online in stride, including the stuff I've posted here.  It's a lot of hard work, but like they say, it's so, so worth it.)

And with that, I'm off to give the BSparl a snuggle.

August 02, 2010

No-Sugar Added Poetry.

No-Sugar Added Poetry - great to read, and no carbs!!Diabetes isn't simply about blood sugar meters and doctor's visits - there's a decidedly emotional side to this disease, and to me, taking care of those emotions are just as important as maintaining a good A1C. And in the last few months, there's been a collective effort by the Diabetes Hands Foundation to create a book of poetry for people and by people with diabetes to help raise diabetes awareness ... and our spirits.

I'm proud to be part of the No-Sugar Added Poetry book, written by members of the TuDiabetes community and published by the Diabetes Hands Foundation with sponsorship from Roche.  There are a lot of familiar faces contributing to this book (Amylia Grace, Miriam Tucker, Heidi Shell, and Kerri Sparling [in third person], to name a few), and the power of this poetry is tremendous. 

If you are looking for a way to tap into the diabetes soul of your fellow writers, or if you are someone who loves a PWD and is looking to understand a slice of diabetes life, this book should be part of your collection.  

We all deal with this disease in different ways, but through the power of poetry, we're able to share - and heal - in ways that can't be bottled.  This book is proof that something truly beautiful can be born from adversity.

To order your copy, visit the No-Sugar Added Poetry page on TuDiabetes.  

July 21, 2010

Trends.

So here's a trend:  Today, I woke up to the sound of my baby cooing from her bassinet.  My hands reached over to the Dexcom receiver and I clicked on the button to light up the screen.  I saw a "74" and an arrow trending oh-so-slightly down.  So while Chris changed the baby, I went out to the kitchen to grab a swig of juice before settling in to breastfeed BSparl.  I fed her and then went into the living room to play with her.

Notice any problems here?  Anything ... oh, I don't know ... missing?  Like maybe a blood sugar check when I woke up?  Or at least one after I fed her?

Nope.  Nothing.  No test.  I went all the way from waking up to freaking NOON before busting out my meter.  This is a terrible trend.  And it's happened twice in the last four days.  I'm relying way too much on my Dexcom for guidance, instead of double-checking every hour or two with my meter.  I mean, missing a fasting blood sugar?  I've never, ever done that before.  Even in college, when I was at my diabetes worst, I still tested first thing every morning.

This is not a trend I want sticking.

I miss these little blue guys.  :)Here's another trend:  For the most part, I am BSparl's daytime friend.  During the day, Chris leaves our home office for a distraction and baby-free zone where he can focus on his writing.  So for several hours a day, BSparl is left to her mommy's devices.  (Including, but not limited to, visiting friends for lunch dates, running household errand-type things, and my own attempts to get work done.)   When I'm hanging with the baby, getting to the gym is impossible, and with the weather so hot and humid lately, I don't feel comfortable taking her for a walk in the stroller.  By the time Chris gets home, and we talk for a while, and we have dinner, etc. etc., it's suddenly so late that it's almost time for Colbert to come on.  (NATION!)  And I'm too exhausted to hit the gym.

This is not a trend I want sticking, either.  

A lot of the baby weight has come off (thank you, breastfeeding), but I am in desperate need of some muscle toning.  I need to get some workouts in as part of my schedule in a hurry, because I'm growing tired of feeling flumpy.  Before I got pregnant, I felt good about my body.  Now?  I need a little more effort to get back to fighting shape, or at least faux-fighting shape.  (Like the kind of fighting that includes throwing styrafoam peanuts.  Or something similar.)

The trends of missing blood sugar checks and workouts must end TODAY.  These habits are too damn crappy to let them continue.  I can't let these two trends wreck my goal of good health.  Small changes can make the biggest difference, so as of this moment, I'm realigned myself to test every morning and to get some exercise in at least four days a week.  (I was doing five days a week for years, so four days isn't a bad starting point.)  And it doesn't have to be a gym workout - I'll take anything from a long walk with the stroller and BSparl to an ellipmachine workout to a bike ride. 

Why am I rambling on about this?  Accountability, my friends.  By telling you, I'm setting myself up to be accountable for my actions (or lack of action).  It worked in helping me get my diabetes reigned in for pregnancy, and I hope accountability can help me get my act together to be a healthier mom.

July 13, 2010

Clara Barton Camp.

I love Clara Barton Camp.  I love the way it smells, the way it looks, and the way it makes you feel as soon as you step foot on the grounds.  Driving in to North Oxford, MA last weekend to speak to the staff, I was hit with a wave of excitement at the idea of visiting my old stomping grounds.

And even though the cabins are new (no more rotten old Pixie Place) and they have bathrooms and showers IN THEM (no more waking up a buddy in the middle of the night to take a trek to the lab - which was across the camp - because you had to pee), and even though I was a camper there over fifteen years ago, NOTHING has really changed.  Almost all of the campers and staff have type 1 diabetes, making the few people who didn't have to test their blood sugar first thing in the morning the odd ones out (for once).

When I arrived, the dining hall was literally throbbing with the sounds of campers and staff singing camp songs at the top of their lungs.  "Sounds exactly the same as when I was camper here," I said to Abby, who was giving me a quick tour of the new cabins at CBC.  Admittedly, I felt a little old when she was walking me through the cabins, because I kept remarking at the fact that the structures had both running water and electricity.  

"I feel like one of those old people who constantly tells you about how, when they went to school, they had to walk uphill BOTH WAYS, clutching potatoes in their hands to keep them warm.  But seriously, cabins having bathrooms is amazing.  My mind is blown."

Once we made it up to the dining hall, I had the absolute honor of meeting with the staff and LITs (Leaders in Training) at CBC that had diabetes.  I was invited up to talk about growing up with diabetes what it's like to transition from being a child with diabetes to an "official" grown up with diabetes, and these girls were the best audience I have ever had.  And the audience with the highest percentage of diabetes!  According to the camp director, there are only about 14 people on the grounds who aren't living with diabetes - that's a LOT of insulin being piped in on a daily basis! 

The awesome staff members at Clara Barton Camp.

We all hung out in the dining hall and just chatted.  It felt like a big slumber party, only I wasn't sporting pajamas (and I planned to sleep at home).  They had a lot of questions about managing things like college, dating, and of course, the whole baby thing.  I tried to be as honest as I could be, toeing the line between "one of them" and "an adult."  Like when they asked me about drinking.  "I know I'm supposed to be responsible and tell you that drinking with diabetes can be really dangerous, and can lead to some very serious diabetes-related consequences, which is all true.  But I can't lie and say that I didn't drink in college.  So here's what my experiences were like ..."

It was an incredible night.  These girls are a group for the entire diabetes community to be proud of.  Their energy, their endless smiles, their excitement for everything.  They took pictures (some goofy) and burst into song at the mere mention of the word "song."  (Video of a song about ketones coming at you ... now:)

Clara Barton Camp has this way of making you feel like you're being hugged the entire time you're there.  It sounds cheesy, but it's true.  CBC is like a second home to so many girls with diabetes, and for some, it's the first place they've ever felt like everything was going to be okay.  I asked some of the staff members to tell me what camp means to them.  Their responses were varied, but all hitting on the same general theme:

"Camp helps make me who I am."
"It feels good to be able to text someone in the 'off season' [when camp isn't in session] and vent about a high blood sugar."
"When I'm here, I sometimes feel homesick, but when I'm home, I definitely feel campsick."
"Here, diabetes is cool.  The people who don't have it are 'wannabetics.'"
"When I am here, I feel like a whole person."
"I thought it would be about teaching the kids, but I'm learning so much myself here."
"This place is literally my second home."
"These are friends that I'll have for the rest of my life."
"Camp is my security."
"I'm glad I'm staff this year because I get to give back to something that gives so much to me."

But my favorite was when one staff member raised her hand and said, "It's the happy bubble.  This whole place makes me feel like I'm in a happy bubble."

Clara Barton Camp is definitely one, big happy bubble.  And it was such an honor to revisit a place that played a huge role in shaping how I view my diabetes today.  Huge thanks to Abby, who coordinated the event, and to each and every member of the CBC staff for their warm and inspiring reception - and for the kick-ass t-shirt.  (And props to Savannah for rocking those mismatched galoshes!)

July 12, 2010

Calling All Type 1 Adults.

I've had a chance to attend several CWD "Friends for Life" conferences in the last few years, and it's been one of the most inspirational times in my life.  All those kids with their meters stashed in their backpacks, their pumps stuffed into their pockets.  All those adults who are living well, and honestly, with diabetes, sharing their stories "from the trenches" and leaning on one another for support.  All those parents of kid with diabetes, finding hope and inspiration in every person they have the chance to meet.

Don't let the name of the organization fool you - Children with Diabetes isn't just about small children.  Becoming "friends for life" isn't limited to seven year olds.  But the conference used to be geared towards kids and their parents, and we are being given the chance to round out that agenda a bit.  

Today, I'm asking that you visit Scott Johnson's blog at Diabetes Daily, check out his post "Adult Type 1 Conference," and to please leave your feedback.  We're aiming to have a track at FFL next year for adults with type 1 diabetes, but we need to make sure we're creating sessions that type 1 adults want to attend.  (Here is a link to the focus groups that took place in 2010, and the adult/parents schedule, just to give you a feel for what has already been discussed.)  Your feedback is crucial and can help to shape the new face(s) of the 2011 conference.

Thanks in advance for all of your feedback!!

July 06, 2010

Finding Your Voice Online.

Last Wednesday morning, Amy from DiabetesMine and I co-lead a focus group at the Friends for Life conference called "Finding Your Voice Online."  The group consisted of a bunch of d-moms, d-dads, and some kids with diabetes who sat in on the session, not to mention some terrific diabetes bloggers (Heidi, Scott, Chris, and Bernard).  And then there was Amy.  And me.  (And my enormous iced coffee - so necessary.  Apologies to everyone who realized I was way over-caffeinated by the end of the presentation.)

Amy opened with an introduction to her blog and her work in the diabetes community, and I finished with my story of how I ended up immersed in the blogosphere.  (Slides below.)  We shared how we 'got started' with blogging, and what kind of opportunities have come as a result of our efforts.


I've spoken at different conferences before, but the Children With Diabetes conference is different.  Its core audience isn't someone with a Pharma agenda or something to sell - the people who go to the Friends for Life conference are people with diabetes, and the people that love them.  They're the people who are affected every day by diabetes, and if this conference had existed when I was growing up, I would have had a completely different perspective on my diabetes.  The FFL audience cares not only about new research developments, but about the real life of a person with diabetes.  Their kids are more than their disease, and I hope they found some comfort in seeing two adults who were more than their diabetes, too.

As I clicked through my personal slides, I talked about my life and my marriage and my stupid cat.  And then I shared with them what I was most proud of:  my daughter.  "When I was first diagnosed, back in 1986, my doctors told us that my having children would be near impossible.  But I am so proud to say that I proved that you can have a healthy baby, even if you have diabetes."  And her little face, grinning out from the slidedeck, proved to me once again why people with diabetes need more exposure to others living with diabetes.  It feels so empowering to know that you can do anything - have a child, drive a race car, fall in love, climb up Everest! - even if you are living with diabetes.

Bloggers at Friends for Life
Bernard, Amy, Kerri, and Scotty J!!

The parents in the audience had a lot of questions, and many concerns were about online privacy.  We talked about the decision to share or not share our child's name or photo with the online community.  "For me, I decided that a few photos here and there were fine, but I wasn't comfortable subjecting my kid's name to Google just yet.  I want her to make that decision for herself.  But I'm like any other parent, and it's hard not to share my little kid with everyone!"  

One parent talked about her decision to make a JDRF walk fundraiser video, and how she had mixed feelings about the level of exposure.  

"I think that we're all safe in this diabetes community, but I need to remember that there aren't just people with diabetes who are reading my blog."  I said.  "Sure, the patient and medical community might be reading our posts and watching our videos, but there are also some completely random people who might be logging on.  And while we're safe within the 'borders' of the diabetes blogosphere, the Internet as a whole isn't quite as safe."  

Some parents had questions about starting their own blogs and getting involved with the diabetes blogosphere.  Others had questions about how to raise the awareness of their existing online properties.  Amy and I walked them through different resources for developing their online voice.  

I have always been a huge supporter of the Children With Diabetes efforts, in particular the Friends for Life conference, and having the chance to speak at a focus group was more than an honor  - it was like coming home.  Thanks to Jeff and Laura for hosting us, and thanks to all of the discussion participants! 

July 02, 2010

Reaching the Summit.

On Monday afternoon, BSparl, Chris, and I boarded a plane bound for Orlando, Florida.  (It was our first trip with the baby - more on that later, because I'm still processing all the stuff required to travel with an infant.)  My trip was dual-purposed:  to attend the Roche Social Media Summit and then co-lead a focus group on Wednesday morning at Friends for Life. 

Like everyone else, I have a disclosure with this:  Roche paid for my plane tickets to and from Florida, and they also covered my hotel room for Monday and Tuesday night.  But they didn't hold me over a shark tank to gain input from me, and I am also still using my brain on my own, so basically they can only claim travel, food during the conference, and lodging.  They also didn't ask us to blog about the event (even though they knew we would).

But like I said last year, Roche is smart because they know by bringing together a pile of bloggers, Roche will be discussed on a pile of blogs.  And also in step with last year, Roche treated us respectfully and worked hard to make sure we were happy, as a group.  But I can't lie:  I was excited to attend this event because it would put me in "real life" touch with my extended diabetes family.  The invitation coming from Roche makes it a "Roche" event, and I can't hide my bias when it comes to being grateful to them for having the opportunity to socialize with my social media friends.  So that's the full disclosure. 

The event took place as a bookend to the CWD "Friends for Life" conference, which seemed to dictate the timing and location.  I think there was a total of thirty-seven bloggers, representing the type 1 community heavily, but with voices from the type 2 and caregiver crew as well, and we were hanging out in a conference ballroom at the Orlando Marriott all day on Tuesday.  

The Roche representatives were very cool to us, and didn't seem to have an agenda of expectations - just an agenda of events.  They had us engaged in discussions about meter accuracy and they also invited in representatives from the American Diabetes Association and the American Association of Diabetes Educators to talk with us.  I felt a little quiet during these discussions (thanks to the utter lack of sleep the night before, with BSparl not adjusting to the travel schedule and deciding to stay up until about 4 am), but I kept an eye on the RocheWANTED! reps during the chats, because I wanted to see what they were reacting to. (That, and there was this long table set up at the back of the room, where a few of the Roche team members sat, watching us.  So I went over to them and let them know I was watching THEM.  Now the student has become the teacher, grasshopper.  /Confucius rant)

Overall, discussions were interesting.  Meter accuracy has been a hot topic for a while now, with the FDA meetings and an explosion in the blogosphere, and it was a topic of utmost importance for me during the course of my pregnancy.  It amazes me still that meters are "allowed" to be 20% off, and that we almost have to choose accuracy over cost when it comes to test strips.  (More on that later.)  And while the ADA panel of guests answered questions, I still couldn't help but wonder how the ADA spoke for me, as a person with type 1 diabetes.  (More on that later, too.)  

But the Summit itself wasn't about the discussions or the agenda of our host Pharma company.  (Even though, and I'm being completely honest here - I'm impressed that Roche wants to sit in the same room with a bunch of bloggers.  We aren't known for being quiet or demure, that's for damn sure, and we don't have a penchant for butt-kissing.  So they get us and our opinions, raw and unadulterated.  Yet, this is the second year they've invited us to meet with them.  I remain impressed.)  The Summit is about bloggers getting to know one another offline, and whether or not Roche understands that aspect wins out over any Pharma agenda, it doesn't matter.  People power wins over scheduled discussions.

So thanks to the Pharma company that dared to play host to bloggers for the second year in a row.  And thanks to the diabetes blogging community, which plays a huge part in improving my emotional diabetes health. 

(Oh, and thanks to the Photobooth, which let Scott and I pretend to be lions in the first shot and let us see up George's nose in the last one.)

May 26, 2010

Oxygen Mask.

Gotta wear mine before I can help BSparl.In the airplane safety manuals, they instruct you to, in the case of an emergency, put your oxygen mask on first, before assisting others with theirs.  Makes sense.  Can't help someone if you are in need of help, yourself.

Chris and I reference the "oxygen mask" all the time, mostly when I'm low.  During the course of the pregnancy, I had some wicked lows that kept me from attending conference calls, making it to dinner meetings, and even just meeting a friend out for coffee.  "I'm going to be late, but I need a few minutes.  Oxygen mask, you know?"  And Chris would nod, knowing that I was waiting until my blood sugar was stable before I headed out. 

But as I wrote about yesterday, I'm in the middle of The Suck.  Can't wrap my head around what I need to do in order to take care of myself, because I'm too overwhelmed with what my daughter needs.  The baby learning curve is pretty steep, and both Chris and I being schooled on just a few hours of sleep.  My baby is well-cared for, but my diabetes management has seen better days.

... so I guess my baby isn't as well-cared for as she could be.  Because I'm trying to put her oxygen mask on while fumbling with my own.  

Yesterday's post had some good ideas in the comments section, and I'm going to try and implement them going forward.  Like the testing suggestion.  I'm already testing my blood sugar before I feed the baby, so now I need to find other benchmarks in my day to assign testing to.  I'm working off a mental "even numbers" schedule today, making sure that I test at all the even hours.  I'm awake around 6:15 am every morning, so that means I get a 6 am fasting, and then a test every two hours. 

Some other things I simply need to make part of the routine.  So it becomes natural(ish).  Like the Dexcom.  That tool is extremely useful to me ... when I look at it.  For the last 11 days, I had a sensor in and the Dexcom was working great, but I wasn't looking at it.  The receiver would sit on the dining room table while I worked on my laptop and I'd barely pay it any mind.  Then, one night when it was pinging because I was high, I turned off the high alarm so that it wouldn't wake up BSparl.  Being the dingbat that I am, I left the high alarm off.  For four days. WTF?  What's the point of wearing the device when I'm not using it when I need it most?  Today, a new sensor goes on and I'm determined to reset the alarms and to actually use the data.  (Otherwise, what's the point?)

And then there's what Chris and I call "life stuff." Like remembering to call in my reorder for insulin to my mail order pharmacy.  And then remembering to pick it up from the mail drop.  Or remembering to throw a bottle of glucose tabs in my purse or the baby bag, or grabbing a back-up insulin pen, or making sure I have enough test strips in my meter case to get through the day.  Maintenance.  Life stuff. 

But I can't do all this stuff at once.  Baby steps, right?  Today, I'll start with testing more frequently and rearming myself with the Dexcom.  I threw a bottle of glucose tabs both into my purse and the baby bag this morning, and I called in my insulin reorder a few minutes ago.  New bottle of test strips is floating around in my purse.  Small changes that will hopefully make a big difference in how things roll out, diabetes-wise.  Because the better care I'm taking of myself, the better care I'm taking of the little BSparl baby.

Oxygen mask, you know?

May 25, 2010

The Suck.

Bright?  Not me these days.While motherhood is going well and I'm completely in love with my daughter, I'm reminded, daily, that diabetes doesn't care if I've slept or if I have carefully counted carbs or if I've just changed my infusion set.  Diabetes doesn't give a shit about my schedule.

It's The Suck.

Like last week, when at 4:30 am, my "alarm" went off - also known as BSparl starting to fuss and wail from her bassinet in our bedroom.  Not a problem.  I woke up, tested my blood sugar, and saw that I was 176 mg/dl.  That number (albeit spiky) works just fine for feedings, so BSparl and I spent some quality time hanging out, having an early snack, and debating where exactly the sun hides behind the trees before it starts to poke out.

We both went back to bed around 5:45 and slept until the next alarm went off - the Dexcom BEEEEEEEP!ing wildly at me at 8 am.

"Do not wake up the baby, you."  I grumbled while fumbling for the receiver on the bedside table.  "LOW.  Under 55 mg/dl" was the warning it was flashing up at me.  While BEEEEEEEPing.

"Shhhhhh!!"  I unzipped my meter case and deftly stuck a strip into the top of the machine.  I wasn't sweaty, my brain was functioning fine (aside from shushing inanimate objects), and I felt physical capable.  Maybe the Dexcom was just being finicky and throwing lower numbers?

"36 mg/dl"

Well shoot.  Not a whisper of a symptom, either.  I got up from the bed and wandered out to the kitchen, where Chris was making his protein shake.

"Can you keep an ear on the baby?  I'm 36 and just want to grab some juice," I said, opening the fridge door.

"Of course."  Pause.  "What?  You're 36??"

"Yeah.  No symptoms, dude.  Not even one."  I chugged a few sips of grape juice and put the bottle back in the fridge.  "I feel fine.  The Dexcom woke me up."

A blood sugar of 36 mg/dl without a single symptom, other than a wailing Dexcom and a bit of a groggy feeling.  But, in true diabetes form, once my blood sugar started to rise, I felt the symptoms acutely. 

"I feel pretty bad right now."  Shunk.  "Fifty-six.  Why do I feel worse at 56 than I did at 36?"

There's no rhyme or reason to diabetes.  The symptoms of lows and highs change with the seasons, it seems.  And they come without warning, these numbers.  Sometimes it's a hormonal or emotional surge that sends numbers pinging.  Other times, it's a little, teeny technical glitch that sends thing spinning.

Like two nights ago, when I bolused for a snack and felt a damp spot on the side of my shirt.

"What the ..." and I probed with my fingers and felt that telltale wetness around the gauze of my infusion set.  I tugged up the side of my shirt and gave the spot a sniff - yup, that bandaid smell.  Frigging infusion set was leaking some how.  No symptoms, though.  I wasn't thirsty, I wasn't lethargic, and I was actually just about to head off to the gym.  I felt pretty okay.  Problem was, I hadn't tested in about four hours, nor had I peeked at the Dexcom.  So basically, I didn't have a clue what was going on in my body. 

I tested my blood sugar and a 423 mg/dl grinned back at me.   

(Have I mentioned Yosemite Sam yet in this post?  Suffice to say, I rocketed through a list of curse words that would have caused Yosemite Sam to give me a frick-a-frakin' high five.)

New site, quick injection with an orange capped syringe from the fridge, a ketone test (negative), and an hour and a half later, I was down to 195 mg/dl.   But I was pissed.  Because during the course of my pregnancy, I maintained an A1C between 6.0% and 6.5% and I busted my butt to keep myself controlled.  But now, with my body reacting to adjusting levels of hormones and a serious lack of concentration due to a truncated sleep schedule (read:  no sleep 'til Brooklyn, with Brooklyn being college, I think), I'm all over the map. 

I'm frustrated with my control, or lack thereof.  Trying to figure out my post-pregnancy insulin needs and taking care of my little girl have become a full-time endeavor, and I'm not getting it completely done on either front.  I have to buckle down.  These epic lows and highs are not fun, and are wrecking havoc on my healing body. 

Next week, I'm back at Joslin to see my endo.  Diabetes needs to take center stage until I can get things under better control.  It's my priority.  I need to get back to logging, to testing every hour and a half or so during the day, to actually cooking meals instead of just snacking when time allows, to changing my infusion set when it's due, not when it's convenient. 

... after diaper changes, of course.  And breastfeeding.  And BSparl laundry.  And pediatrician appointments.  And 3 am feedings.  And that occasional moment when I lock the bathroom door and look at myself in the mirror with determination and say, "Get it together, Mommy."  

May 12, 2010

Permanent Scaffolding.

Diabetes support scaffolding.  Which, thankfully, is not filled with cats.I was thinking about today's DBlog Week prompt, and trying to figure out my "biggest diabetes supporter." 

Would it be my mom, who learned to pinch hit as my pancreas before I started second grade, making sure I had a childhood that wasn't owned by diabetes?  Would it be my friends, who instinctively carry tubes of glucose tabs in their glove compartments or purses without even realizing it?  Would it be my pediatric endocrinologist, who never forgot that liking boys and sleep overs at my best friend's house were just as important as blood sugar logs and insulin injections?  Would it be this online community of fellow diabetics, who understand that there's a real life to be lived, even after diagnosis?  Or would my hero be my husband, who has championed my health and made me feel like I was every bit his bride, no matter what the status of my pancreas?

There are so many people who are part of my life with diabetes.  But life is more than all this diabetes stuff.  Diabetes doesn't define me.  (Have I mentioned that before?)  And it doesn't define my relationships, either. 

In my head, diabetes is just one part of the core of who I am.  And the people who support me, and my diabetes "stuff," are part of the scaffolding that keeps me steady.  Diabetes is a constant in my life, but also a constantly shifting priority.  Some days, I don't need much help or care and diabetes maintenance is on the back burner of my life.  Other days, it's a huge part of the day and requires a lot of attention.  And then there are the in between days.  But regardless of how loudly diabetes is fussing on any given day, the people in my life who support me aren't viewing my health as a project we need to constantly discuss or assess.  It's what we do, as a family, almost without thinking. 

And those people I mentioned - my parents, my husband, my friends, my medical team, and you guys - are the permanent scaffolding in my life.  The structure that I almost forget is there sometimes, because it's folded so seamlessly around the rest of my life.  You all help me repair and maintain my health, wrapping neatly around the whole of me and keeping me standing tall and strong.

On the easier days, I take it a bit for granted. 

But on the hard days, I'm able to stand tall, thanks to this support.

May 10, 2010

A Day in the Life of a New Mom with Diabetes.

For D-Blog Week, Karen challenged the diabetes blogging community with a week's worth of blog prompts. Today is "A Day on the Life," and I've decided to focus on my new life with BSparl.  (Because if I tried to pretend that motherhood isn't affecting my diabetes, I'd be lying my face off.)

DING!!!  Game on.

A day in the life of a mom with diabetes5 am:  Alarms?  We don't need no stinkin' alarms.  Because now we have little baby girl who wakes us up at all hours of the night. 

When BSparl starts to fuss from her bassinet, either Chris or I leans up to check on her to make sure she's okay.  Since Chris usually does the 1 am feeding with a bottle, I try and do the 5 am feeding.  Since I'm breastfeeding, what I need to do first is check my blood sugar.  Anything less than 120 mg/dl and I'm snacking while she's eating.  I start this feeding at 98 mg/dl.

5:15 am:  BSparl is done with one side.  I switch her to the other side to finish eating, and I brush the foil wrapper that the fruit snacks came in to the floor.  

5:45 am:  BSparl is fed, burped, changed, and tucked back in.  I test my blood sugar again - now I'm 74 mg/dl and the Dexcom is showing a bit of a drop.  I wander out to the kitchen for peanut butter and a piece of toast.  (Not froast.) 

7 am:  Up again, only this time because the Dexcom is blaring at me.  49 mg/dl.  WTF?  Breastfeeding has very unpredictable effects on my blood sugars.  Some mornings, it doesn't make me low at all.  And then other mornings, it makes me plummet.

7:30 am:  BSparl and Chris are asleep in the bedroom, so I settle in on the couch with my laptop and a cup of tea.  My goal?  Answer some emails, write a blog post, finish some stuff that always seems to be due and I'm chasing the deadlines of, and use the breast pump to stash some milk for BSparl.  My insulin pump tubing sometimes gets tangled up in the breast pump tubing.  Which makes me think I'm wearing too many freaking pumps.

9 am:  Husband and daughter emerge, both sporting the same furrowed brow of the morning.  BSparl needs to be fed again, so I test my blood sugar to see where I'm at.  145 mg/dl - thank goodness.  Enough with the lows.  Bring on the BSparl!

11 am:  All of a sudden, it's almost noon, and I haven't eaten anything since 7 am.  I also haven't answered a single email.  Or finished the article I needed to finish.  My mornings are usually spent testing my blood sugar, feeding BSparl, changing her diapers (which have baby Sesame Street characters on them, which makes me laugh.  Because what do you call "Baby Big Bird?"  Little Bird?), and doing laundry.  I test my blood sugar - 118 mg/dl - and thank God that it's not pinging all over the damn place today.  Because some days it does. 

High Noon:  Still haven't eaten.  I force myself to stop and devour a Greek yogurt.  Blood sugars are holding steady.  But my pump site is aching a little - when was the last time I changed out the site?

Noon-thirty:  BSparl and I investigate the site.  Well, she hangs out in her bouncy chair on the bathroom floor while I take a look at the infusion set.  Looks fine - edges are peeling a bit - but it's only been four days.  Even though the reservoir isn't anywhere near empty, I opt to change the site because it's achy.  And because if I don't do it now, while I'm thinking about it, it will be another full day before I remember.  With all of my focus on BSparl and adjusting to life as her mommy, sometimes diabetes takes a wicked back seat.

1 pm:  New infusion set is in, baby girl is getting a bottle of breast milk because my own breasts need a break sometimes, and I still haven't answered one single email.  Is this why people take maternity leave?  I need some coffee.

2:15 pm:  Thirsty as all hell.  Test again - oh, that's nice.  233 mg/dl.  Frigging pump site change ... did I forget to take a little 0.3u bolus before pulling the site?  That seems to be the only way for me to avoid post-site change highs.  But of course, I had forgotten to do that.  And now I'm basking in the warm warming glow of a high blood sugar.  FanTAStic.  Still haven't eaten lunch, and now lunch is on a further delay due to the high.  I bolus down the high.

2:45 pm:  Dexcom shows that I'm dropping.  Meter confirms the same - 177 mg/dl.  Thing is, with the baby now out of me, I'm trying to figure out what my body's insulin needs are.  And that's tricky, because with breast feeding, I am never able to do an accurate basal test.  I have an appointment with Joslin in two weeks (for my 6 week follow up after surgery/birth), so I'm trying to log blood sugars to give my endo something to go on.

2:46 pm:  CRAP!  I haven't logged any blood sugars in three days!  With BSparl in my arms, I open up my laptop and try to find the spreadsheet.  I locate it, and then try to scroll through my meter memory and type the blood sugars into the spreadsheet using one hand.  BSparl decides this isn't a good time for her, and she makes a sound not unlike a can of shaving cream being deployed.  (She is a delicate, fragile, pooping flower, this child of mine.)  Diaper change time!

3:30 pm:  Lunch.  Finally.  Blood sugar is 109 mg/dl.  Lunch is a turkey and cheese sandwich, even though I'd much rather go low-carb these days to help lose the pregnancy weight.  But without carbs, I'm low all the time after feeding BSparl, so carbs it is. 

4 pm:  Time to head out to the grocery store and then to the post office.  BSparl hangs at the house with her dad while he works, and I test once more before getting into my car.  167 mg/dl.  How is the post-prandial that high?  I counted those stupid carbs.  My insuiln:carb ratio, I thought, was settled back into 1:12.  I need to test that ratio again, but no time today.  Must run errands.

4:04 pm:  As much as I love my daughter, I felt guilty blasting the Beastie Boys while she was inside of me.  Without her in the car, I can crank up the volume of the music again.  So i do.  As I head to the grocery store.  Damn, my life is a thrill a minute.

5 pm:  Walking out of the store, I realize that my Blackberry has been pinging for three hours and I haven't looked at it yet.  Checking the emails, I see that 75 emails have come in since 7 am.  And I STILL haven't answered a single one.  Whoops.

6:30 pm:  It's time for BSparl's dinner.  And then we read a book together - I like Dr. Seuss, but sometimes we read other books because I can only make my mouth navigate words like "Th'need" so many times before I start to either giggle or accidentally spit on my daughter while reading.  

7:45 pm:  Chris heads down to the gym and I prepare to go when he gets back.  (No, I'm not really "exercising."  Can't for another two weeks, due to the c-section.  But I can go for walks on the treadmill, so that's what I do.)  I test my blood sugar (139 mg/dl) and get all my crap together for the gym:  Dexcom receiver, meter, cell phone, reaction treaters, and that ever-elusive pair of workout pants that actually FIT. 

9 pm:  Back from the gym, blood sugars are steady for once, and BSparl is napping.  FINALLY, I answer some emails and finish up that article.  Oh crap - dinner!  I find something in the kitchen that doesn't require much assembly.

11 pm:  I realize that, since 5 pm, I've either fed BSparl or pumped six times.  How is that even possible?  Sure does account for the unpredictable blood sugars, though.  My body is in a constant state of "feed," making trends nothing short of chaotic.  And I have to be honest - I'm not sure I have the mental bandwidth to wrangle in diabetes and motherhood with any kind of precision these days.  Working off of very little sleep, and trying to understand the new swell of hormone changes in my body, is frustrating as hell.  Diabetes fine-tuning isn't my top priority these days.  I just want to coast as safely as I can at the moment.  (Note to people who may want to lecture me about my own health: Back off for a few weeks before you run cryptic commentary.)

Midnight:  What am I thinking, still awake??  BSparl will be up in two hours for her 2 am snack.  I'd better restock the bedside table with low blood sugar snacks and call it a day.  

Midnight-thirty:  Whoops, forgot to test.  94 mg/dl.  Dexcom confirms it's a steady number.  Off to bed!

Game Over ... until 5 am.  :)

April 13, 2010

Diabetes During the C-Section: Here's the Plan.

Preparing for the diabetes part of BSparl's birthI've received a lot of emails about the how diabetes will be handled during the actual "birth" of Ms. Bsparl, and while I won't have all the details until it's all over with, I do have a few answers for now.  I talked with my OB (who will be performing the c-section) and my team at Joslin about some of the details.  This might be a detailed, kind of boring post, but I wanted to make sure I'm answering all the questions possible! 

Here's what I know so far:

On Wednesday night, an IV will be "installed" in preparation for the insulin drip.  I'll still have my insulin pump on, though.  As of midnight on Wednesday, I won't be able to eat anything from that point until post-surgery, so the IV will be at the ready in case I go low during the course of the night.  In the event of a low blood sugar, my team will do one of the following:  suspend my insulin pump, administer glucose through the IV, or potentially allow me to drink apple juice, depending on the circumstances. 

The c-section will be first thing in the morning (8 am), so the night before will be spent checking my blood sugar with the glucose meter every 30 - 45 minutes to ensure the tightest, steadiest control possible.  In my circumstances, I plan to keep the Dexcom connected throughout the night, too, to help with that goal.

The morning of the c-section, I'll get up wicked (pissah) early (5:30 am, I think) and I'll rip out my insulin pump and remove the Dexcom sensor.  The nurses will hook me up to the insulin drip and my blood sugar will be monitored - wait, strike that.  Stalked.  :)  I'll be hooked up with the drip, etc by 6:30 am and up to the delivery room.

We'll move into the operating room and my blood sugar will be monitored stalked by the Joslin team while the OB/GYN team prepares to deliver my baby girl.  Chris will be in the waiting room while they administer a spinal epidural (Do not Google this, because it will make you cringe.  I made the mistake once of Googling it.  Never again.  It made me want to give birth orally.) and then they will ensure that my lower half is numb and ready for surgery.  Chris will scrub in and be brought in to the room, where he'll be situated up near my head and the surgery will begin.  My team said that Chris is welcomed to hold my meter and test my blood sugar at our discretion, and the Joslin team will be doing the same using their meter or mine, depending on our preference.  But if I feel nervous about going low, etc, I am able to keep tabs on my own numbers. 

During the course of the surgery, I'll have a regular IV in for fluids, etc, and then the insulin drip will be combined with a glucose drip, the contents of which can be adjusted based on my blood sugar needs.  So if I start to spike, they can increase the insulin titration.  If I start to drop, the glucose can be turned up.  All of this is handled by the Joslin team, so my OB team can concentrate on BSparl's escape.

According to my doctors, the whole c-section will take about an hour, from start to finish.  Bsparl should be in Chris's arms by 8:30, and I should have all my pieces back together again by 9:00 am.  I'll be brought to the recovery room and Chris and BSparl will join me soon thereafter, barring any issues.  The insulin/glucose drip will remain in until I'm able to eat something, at which time the pump will be reconnected (by me), and after an approximate 30 minute overlap, the insulin drip will be removed. 

The Joslin crew told me that my postpartum insulin settings on the pump will be a whisper of what they were during the pregnancy, and about a third of what they were pre-pregnancy.  At this stage, they're assuming that I'll jump down to a midnight to midnight basal rate of 0.3u, an insulin-to-carb ratio of 1:20, and a sensitivity factor of 1:80.  (My pre-pregnancy basals were more around the 0.4 - 0.6u range, an I:C of 1:10, and a sensitivity factor of 1:55.)   And once I'm breastfeeding, all bets are off as to how that activity could affect my blood sugars.  Only time will tell. 

So that's the low-down on how the diabetes, at least, will be handled during delivery.  I don't want to think too much about the surgery itself, because it freaks me out.  But handing over all of my diabetes control also has me a little tweaked.  After over 20 years of doing it myself, it's hard to grasp the concept of "let someone else handle it entirely."  But I know I'm in capable hands with Joslin, and I know that my focus needs to be on the baby. 

She's worth every hurdle that we, as a family, have overcome to make it to this point.

Because at some time during the whole ordeal, her little teeny cry will cut through all the noise, and in that moment, I'll become a mom. 

March 23, 2010

Looking Back: Understanding Pity.

Today is a BSparl day, and I'll be at the doctor's office for the majority of the day, having blood work, attempting to depuff Le Puff, and spying on my baby girl as she goes her moving and shaking in there.  I wanted to revisit a post from almost three years ago about the delicate balance between advocacy and pity

I love me some advocacy, but pity?  No thanks.  I'm all set with that.

*   *   *

Pity party?I see a lot of marketing materials from various diabetes organizations, publications, and websites.  The messages are varied, to say the very least.  They're all are asking for your support, most often financially, to either raise awareness of diabetes or march towards a cure.  That much is definite.

The variances are to be expected, though.  This disease doesn't follow many rules.

The curious thing to me, after having seen hundreds of these materials, is how different companies chose to portray diabetes.  Some companies show the 53 year old man sitting next to a dialysis machine.  Others show a small child, running in a playground, smiling despite their diagnosis. A crying child being injected in the arm with a syringe, clutching their teddy bear?  A smiling, healthy-looking person testing their blood sugar?  Or a sullen, sad person taking their medications as a tear of hopelessness runs down their face? 

Mixed messages ranging from "I can do anything!" to "I can't do a damn thing."  Ah, the many faces of diabetes.

I can understand the "pity ploy," because if you show the face of a small, hopeful child with their whole life of promise ahead of them, it's a bit easier to ask for money.  "How can you sit there and not help the children," sort of endeavor.  From what I've seen, people don't feel as pressed to donate towards a cause that shows images of people living healthy lives with diabetes.  It's the proverbial pain and suffering that draws people in and tugs at their wallet. 

It's just a strange thought that portraying myself - ourselves- as healthy people may actually keep people from supporting our cause.  "She doesn't need our help.  See, she's just fine with her insulin pump and exercise regimen and doctors.  She's fine." 

What these marketing documents can't convey is the constant thread of "make sure you" that runs through my mind. 

Make sure you bring your meter in case you need to test.  Make sure you have juice and insulin, for either a high or a low blood sugar flip.  Make sure you go to the doctor to have your A1c taken to keep you on track.  Make sure you have a job with good medical insurance so you can afford all the supplies you need.  Make sure you have friends and family who can support you on your journey with this disease.  Make sure you don't overindulge/undereat/over-compensate/under-estimate. 

Make sure.

I'm confused at times, because while I'm young and healthy and in control now, I wonder what my future will hold for me.  I hope I'll always be healthy.  But I'm never sure.  I can't really "make sure."  I can just keep trying.  And hoping.

Can marketing materials tap that uncertainty?  Can they show the efforts we put forth to achieve good health?  What kind of picture or tag line or template would they use to show our lives?

March 22, 2010

Health Care Reform: How Does it Affect People with Diabetes?

I can haz a question?The health care reform bill "doesn't fix everything that's wrong with our health care system, but it moves us decisively forward," said the President yesterday.  Insurance companies will be under government regulations, coverage can't be denied based on pre-existing conditions, and the bill should be signed as early as this Tuesday.

Wait ... coverage can't be denied based on pre-existing conditions?  

According to this New York Times editorial, "The biggest difference for Americans who have employer-based insurance is the security of knowing that, starting in 2014, if they lose their job and have to buy their own policy, they cannot be denied coverage or charged high rates because of pre-existing conditions. Before then, the chronically ill could gain temporary coverage from enhanced high-risk pools and chronically ill children are guaranteed coverage."  

I've always wanted to take that leap and run my own business.  I enjoy working in new media and health care, I like working hard, but what kept me from making a bold move was pure and unadulterated fear.  It was the same fear that caused me to immediately grab my diploma after college and start working at a crappy job two days after graduation, simply so I wouldn't lose my medical insurance coverage.  (I was a bank teller.  I have no math skill to speak of.  Tell me how that career choice was safe for anyone.)  As a type 1 diabetic, medical coverage takes precedence over a paycheck, seeing as how I have never had the option of purchasing a private policy.   (Something about that whole "taking insulin" thing makes insurers squeamish.  What, like taking injections ever kept me from becoming a productive member of the work force?  Yet I'm allowed to pay my taxes.) 

Sometimes, it takes a bold move to force a bolder one.  I left my job last October in pursuit of one thing:  a healthy pregnancy.  The fear that once held me back was replaced by the overwhelming desire for a healthy pregnancy, and Chris and I moved forward without hesitation.  But, of course, we had to make sure there wasn't a lapse in my insurance coverage, and with pregnancy being considered another pre-existing condition, I remained insured by COBRA.  Thankfully, once BSparl is born, we have another plan in place.  But the details of my insurance coverage aren't the focus here.  Nor will they be.

The point is now there are options for people with diabetes.  Or at least that's what I'm hoping.  I've been pouring through the newswires and seeing, over and over again, how pre-existing conditions can't be denied.  Reuters reports that  "Uninsured adults with a pre-existing conditions will be able to obtain health coverage through a new program that will expire once new insurance exchanges begin operating in 2014."  This is in addition to insurers being "barred from excluding children for coverage because of pre-existing conditions."  And I remember when I was a kid and my parents dealt with that very issue after my diabetes diagnosis.) 

Newsweek sheds a little more light on this, stating, "Insurers who offer plans on an insurance exchange will be prohibited from rejecting customers with preexisting conditions or charging them higher rates. But the exchanges won't be mandatory until 2014. In the meantime, people with preexisting conditions will be permitted to enter a 'high-risk pool,' which offers caps on premiums and out-of-pocket spending. Still, there's a catch: only people who have been without coverage for six months are eligible. The rule is designed to stop people from arbitrarily switching from their private insurance plans to the cheaper—but taxpayer subsidized—pools. But it means that people who lose their jobs can remain uninsured for a full six months." 

I don't know enough about the health care reform bill to speak eloquently about the details.  I am only exposed to what the media shows me, and what my research procures, and what pages of the bill I'm actually able to pour through and understand.  And I know that talking politics on the blog (just like talking religion) can be a very tough topic, because PWD have so many varying opinions and stances on these issues.  But I'm a person with diabetes.  And I'm hopeful.  I'm hopeful that this could be the beginning of diabetes not dictating my insurability.  I'm hopeful that people with diabetes will have the option to work in fields that inspire them, not just ones that insure them.  Diabetes has a hold on so much of what we do throughout the day and so many of our choices, and I'm hopeful that the passage of this bill will give back some options.

(Just a quick note:  I posted something on Facebook and the comments are impassioned, but respectful.  So far.  :)  If you are going to leave a comment on this post, you definitely don't have to agree with me or anyone else, just please be respectful.  Or I'll send Siah after you.)  

March 19, 2010

Accuracy in Glucose Meters.

Accuracy would be nice.I've been diabetic for over twenty years, and when I was diagnosed in 1986, my first meter was an Accu-Chek (this post has some pictures of these old diabetes meters).  The strips were large, absorptive pads that soaked up the blood drop and changed color after I wiped the blood away with a clean cotton ball.  The color strips were either stuck into the machine and read after 120 seconds, or the color pads were compared against the guide on the side of the strip bottles.

Comparing colors?  Total guessing game.  But waaaaay back in 1986, glucose meters were FDA "OK'd" to be off by a margin of 20%.   That means (if my math is right, and don't trust me that it is because I'm still a Morrone) if my meter said "100 mg/dl," I could have been anywhere between 80 mg/dl - 120 mg/dl.  For me, particularly at this stage in my life, that's "almost low" or "almost needing a correction bolus."

Wouldn't you think we've come such a long way since then?

Oh, but we haven't.  

The standards for glucose meter accuracy haven't been tightened up since before my diagnosis.  Sure, meters have gotten fancier and faster and they come in a variety of brands, colors, and sizes, but they aren't more accurate than the ones I used when my fingers were being lanced for the very first times.  (And this was proven to me when I was at the ER the other night - the nurse busted out a Lifescan meter that was older than dirt to test my blood sugar.  It was their approved hospital meter, and the results were the same on that meter as they were on my current Lifescan meter.)

Scott wrote a remarkable post about the issue of meter accuracy yesterday (click here to read it) and Kelly also hit this nail squarely on the same day (her post can be found here).  And Bennet questions what accuracy is in the first place.  And after reading their posts, I'm inclined to comment as well. 

I base EVERYTHING I do, diabetes-wise, on the information provided by my glucose meter.  I base my insulin-to-carb rations on those results, my basal rates, my food intake, and my exercise decisions on those numbers.  I calibrate my Dexcom using those numbers.  EVERYTHING.  Hell, maybe not even limited to just diabetes stuff.  I won't get into my car and put the key in the ignition if my meter shows a result that's too low, and I am reluctant to eat more than a salad at dinner if my glucose result is way too high.  

So when the numbers being provided by my meter aren't as accurate as my dedication and determination deserve?  I get a little fired up.

Over the course of my diabetes life, I know my meter has thrown some wonky results.  I'd have to ask my mom if she ever saw any crazy results, but I know since monitoring my own disease, I've seen plenty.  Over the last fifteen years or so, I've used meters from Accu-Chek, Agamatrix, and Lifescan, and in the last few years, exclusively from Lifescan, due to what my insurance covered.  And for the most part, I never second-checked any of my results, unless I really felt that they were "off" in accordance with my physical symptoms.

But since using the Dexcom, I've been double, and sometimes triple, checking results.  Take, for example, the other day when I received the following results:

Incident One:
3:56 pm  86 mg/dl
3:57 pm  159 mg/dl
3:58 pm  164 mg/dl

The only reason I double-checked that first result was because the Dexcom had me at 170 mg/dl, not 80-ish.  I know the CGM isn't for dosing or treating, but it's pretty friendly for trending and "gisting," so the discrepancy caused me to double-check the result.  And, for the record, my hands were freshly washed with soap, dried, and clean.  The lancet was new (I know - dumb luck on that one).  And I wasn't eating or exercising at the time.  So what gives?  86 and 164 are very different numbers.  That's waaaaay more than 20%.  Even I can do that math. 

Twice.

Incident Two:
5:51 pm  110 mg/dl
5:51 pm  203 mg/dl
5:51 pm  229 mg/dl

This is not the first time this sort of thing has happened - I've blogged about it before and have linked to several of those posts throughout this post.  But now, things are different.  I'm in a constant state of blood sugar panic these days, worrying that not only are these results (accurate or otherwise) affecting my health, but how are they impacting my currently-being-built baby?  Would I be double-checking these results if I wasn't pregnant?  If I wasn't worried about BSparl, would I be willing to use three test strips (aka almost $3.00) per glucose check per sitting?

The FDA recently had meetings about this very topic: glucose meter accuracy.   (CWD mom Ellen Ullman actually spoke at this meeting, representing the diabetes community.  Go Ellen!!)  And Scott had an excellent synopsis of one of the most disturbing statements made at this meeting:

Excellent point made by Scott.

Not good enough for me.  I'm expected to maintain an A1C of 6.5% (or less) throughout my pregnancy.  Diabetes complications, no matter how hard we work to advocate against the guilt, are still ascribed to the patient, not the disease.

I'm working very hard to take care of my diabetes, and to have my efforts impacted by industry apathy isn't right. 

To echo Scott's call to action, I'm urging us all, as members of this influential diabetes community, to visit www.regulations.gov and search for Docket No. FDA-2009-N-0604 to leave your comments.  Tell the FDA that 20% isn't good enough, and we deserve every chance to take the best care of ourselves.  

I don't care if my meter comes in 15 different colors and can juggle knives - it needs to be ACCURATE

Raise your voice.

March 02, 2010

Questions About Growing Up with Diabetes.

Rockin' it old school.  Where's my gel pen?No WAY could I ever claim to "counsel" parents of kids with diabetes.  I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.  

So.  That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD.  Not counseling, but listening.  And learning.  Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.

Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around.  They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head.  Here's my take on this mom's questions about growing up with diabetes:

How well did your parents do in managing your diabetes until you were able and independent?

I can't say my parents did anything short of remarkable work when it came to my diabetes.  And that goes for every parents of a CWD that I've met in the last few years.  I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter.  They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin. 

My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars.  She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip.  She carried measuring cups in her purse and had a food scale in our kitchen.  My pancreas wasn't working hard enough, but my mother was.

This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships.  My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time.  Fights were part of the routine, but it wasn't because of diabetes.  It wasn't despite diabetes.  Diabetes was just part of the stuff we fought about. 

(And on the whole "able and independent" part, I'm still not fully either of those things.  I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support.   And while I'm fiercely independent, I still need, and want, their help.)

Did you resent them?

No.  I never resented my parents for any of this diabetes stuff.  Not even when I wanted to convince myself that it was hard because they made it hard.  Diabetes is hard because it's diabetes.  Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time

I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog).  I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice.  I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy.  But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me.  They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes."   They understand that this disease is serious.  And unfair.  And only sort of manageable.  But also that it doesn't have to own me.  It never has.  And it never, ever will.

What is one thing you could tell me to do that will make make this easier on [daughter's name]?

Blame the diabetes, not yourself.  Or your child.  Let her know that it's you and her against this monster, and you'll always fight beside her, not against her.  You're in this together, and she'll never be alone.

But Reader, you'll never be alone, either.  You've got all of us.   For the long haul.  :)

I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys.  To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways.  If you have insight to offer, please do! 

February 17, 2010

Billing Errors.

I believe this is what's holding them back from making progress with our bills.Yesterday, the mail arrived.  There were catalogs for clothes (mmmm, can't wait until May!), letters from friends, the crappy bills that keep arriving even though we didn't forward them to our new address, and oh yeah, that one bill from my mail order pharmacy.

For a thousand dollars.

Dated January 30, 2009

So, being the rational and patient woman that I always am, I ripped up the envelope it came in, cursing under my breath like my temperamental buddy, Yosemite Sam.  Punctuated each tear of the paper with "fricka-frakin' insurance bill dagnabit ..."

And then I called the mail order pharmacy company.

"Thank you for calling Byram Health Care.  Your call is important to us."

That was enough to start pushing me a little closer to flipping out, even though it was just a recording.  My call is important?  How important is my business with you?  You're billing me over a YEAR after whatever happened, happened.  After entering my account number and social security number and date of birth and favorite color and pressing "pound, star, pound" to confirm that yes, John was indeed my favorite Beatle, I finally got a human being on the phone.

The woman who answered was very nice, and it's not her problem that I was receiving a bill for something from January of LAST YEAR.  So I was as patient as I could be.

"I just received a bill, dated January 30th, 2009, stating that I owe over a thousand dollars for pump supplies.  Can you help me solve this problem?"

She put my information into the system and pulled up my record.  After a quick discussion about the invoice number, she launched into a speech that sounded so well-rehearsed, it scared me.

"This claim was under review as of June 2009, but spans the course of the entire calendar year for 2009.  It has just come out of review and is now being billed to you, as you see there on your invoice.  Your insurance company has denied this claim stating that these diabetes supplies aren't covered under your DME clause and therefore you are responsible for the remaining balance for these insulin pump reservoirs.  In the event that you disagree with this statement, you'll need to contact your insurer and have them contact us to resubmit the claim."

"Oh hell yes, I disagree.  So I need to call the insurance company and pass the buck back to them?"

"Yes.  Have them contact us with their resubmission of the claim."

"Okay, but confirm this for me - this isn't my problem.  This is an issue between you guys and the insurer, right?"

"That is most likely the case, but you'll need to talk to your insurer."

So I called Oxford Health.  And their guy told me that Byram had submitted the claim to Oxford with incorrect billing codes, forcing Oxford to deny the claims for these supplies.

"Even though you guys approved these items for over three years?  And it's not like anything changed?  So it's just the billing code that was different, and that's not even my fault, yet I'm receiving the bill?"

The guy from Oxford confirmed.  "You need to call Byram back and tell them that they need to resubmit the bills to us with this billing code (and he read off some series of numbers to me, that I feverishly wrote down and then promptly doodled cats around - I was fired up, but still easily amused), and then that should start fixing this problem."

"Okay, so let me confirm.  This isn't my fault.  Or my problem.  I'm not on anyone's 'bad list,' and this is an issue with you guys and the mail order pharmacy, right?"

"That's correct, Mrs. Sparling."

"Fantastic.  You've been very nice.  I hope we never have to speak again."

And then I called the customer care center at Byram, one more time.  And this is where I almost got into my car and drove to wherever Byram is located, so I could just find this girl who answered the phone and shove broccoli spears up her stupid nose.

After explaining the basics, and after this new girl brought up my account, I said the following:  "This bill I'm looking at isn't really my problem.  That's been made clear to me by speaking with your associate and then the rep at Oxford.  So can you help me out with this billing issue?  I've been told it's a matter of coding, and not an actual insurance denial?"

And this girl actually said this to me.  "Um, so you want me to resubmit this with a new code?"  Big, big sigh.  "I have to resubmit these to your insurance company?  That's going to take a long time."

I snapped.  BSparl kicked indignantly, egging me on.  "You are upset because you have to resubmit the bill because YOU guys screwed up the billing codes in the first place?  You are giving me attitude - you are really out of line with that, by the way - because you have to do your job, only correctly this time?  Honestly?  I'm looking at a bill for $1000 that is the result of a billing code error, not my error.  And the billing codes are from your side of things.  So this is your error.  I am not paying this bill just so you can avoid doing your job.  Right?  I mean, you have to see where I'm coming from."

Big sigh again.  "I'll have to spend tomorrow resubmitting your claims.  You'll need to call back tomorrow."

"That's it?  So you're on this?  And again, this isn't my problem, right?  I don't need to do anything?"

"No.  You don't need to do aaaaaanything."  Drawing out the A-sound, like I was the one not doing my job.

"Great.  Thank you very much for resubmitting those.  And hopefully tomorrow we'll be all set."  

Co-pays are one thing.  Insurance premiums are another.  But being billed a thousand dollars because someone entered the wrong code and now is griping about fixing the error?  That's a surefire way to piss off a pregnant lady. ;)

February 15, 2010

Disclosure: I've Got One.

Disclosure is the responsibility of the blogger, and we’re under more scrutiny these days than ever before.   But I’ve never had an issue with transparency here – actually, I think I tell you guys way more than you probably want to know.  You knew when I started and stopped working for dLife, you know what publications I’m contributing to regularly, and you know about my relationship with Dexcom.  This blog is about my life with diabetes, and even though I know this is my life that I’ve decided to share, it’s important to me that people know my professional relationships with diabetes companies.  I’d want to know that information if I were reading this blog, too.

So (long winded intro to this post, eh?), I wanted to continue to keep you guys in the loop.  I’ve decided to sign a sponsorship agreement with the Animas Corporation. This whole thing started a few months ago, when I was exploring the idea of a new insulin pump and was excited about the Animas/Dexcom integration (no, I don’t have a CLUE when that’s happening, but I’m mighty hopeful it does go through in 2010).  But I’m still under my current pump warranty, so my hands were tied.  Reps from Animas reached out, one thing lead to another, and now I’m working with Animas, not as an employee, but as part of their outreach program that includes country singer George Canyon, LPGA Golfers Kelli Kuehne and Michelle McGann, and former Miss America Nicole Johnson (to name a few).  The program tries to spread the Animas name by working with people who have diabetes who are doing cool things (pregnancy is cool, right?), can inspire others to consider pump therapy, and want to talk honestly about how diabetes impacts their lives.  Bless their hearts for daring to partner with a – gasp! - blogger.  As part of this program, I’ve switched insulin pumps from my Minimed 722 to an Animas OneTouch Ping and am receiving my pump and pump supplies from the company gratis.  (Don’t worry, my doctor is in the loop and my supplies and pump are still a prescribed item.  This agreement doesn’t replace my medical team – just my method of insulin delivery.)

My new insuiln pump.  With my new, mega-basal rates.  Holy pregnancy!
My new insulin pump, showcasing my new mega-basal rates.  :)

This agreement is similar to the Dexcom one from last year (which is still in effect), in that I’m still going to be business as usual here on SUM.  Like with Dexcom, during the course of drafting this agreement, I spoke at length with many of the folks at Animas and they're well aware that everything I write about won't always be favorable (nothing is perfect, and we’re still talking about needles and diseases here), but what I say about their product will always be honest.  That means that when the pump is behaving itself and working smoothly, I'll say that.  And when I’m frustrated by pump fashion challenges and tangled infusion sets, I’ll say that, too.  This agreement isn’t a filter, but I think it’s important that you, as readers who trust me to be straightforward and honest at all times, know what kind of lens my perspective is seen through.  Just like with anything else.  Like when I tell you that Buried is the greatest film EVER.  (It is.)  Or that my baby is the cutest fetus EVER.  (She does make me smile.)  Or that my cats are the most annoying animals ever.  (I can't stand that gray one.) 

Every blogger is biased, but not every blogger discloses their biases.  I’m trying to do right by you guys, as best I can.

So that’s the latest.  As always, if you have concerns about this, please let me know.  I’m happy to answer any questions (but, just like before, my answer might be “Honestly, I have no idea.”).  And, just like before, if Nikon calls, I’m answering without hesitation. 

February 05, 2010

Oprah Does Diabetes.

The Open Letter Mailbag.  Also looks like a sack of potatoes.  BUT LOW CARB ONES!  :pDear Oprah and Dr. Oz,

Diabetes is very expensive to manage and to treat the complications of, but what comes at an even higher cost is the damage of statements from a doctor, claiming that diabetes is reversible. I was diagnosed as a child, and my type 1 diabetes is not the result of any controllable factors. However, I have many friends who have type 2 diabetes who can make the same claim.

I can't lie - I had a lot of hope about your episode regarding diabetes.  Even though it was billed as "the silent killer" and even though I knew you'd show the darkest side of diabetes-related complications possible to "sensationalize" this disease, I was holding out because I wanted this episode to be accurate. 

Dr. Oz, you are a doctor, and a mouthpiece for the medical community.  I realize you are a cardiologist, not an endocrinologist, so you can't be expected to know everything about every medical condition, but I'm surprised you were chosen as the expert on diabetes.  I understand that doctors are human, as are their patients, and no one expects you to be an expert on every medical condition.  I actually respect doctors who admit that they can do a lot, but can't do everything.  And since you aren't an endocrinologist, I'm not shocked at your casual mentions of the two types of diabetes, not making clear distinctions between the two.  (Actually, I believe it was Oprah (or her husband, Richie Cunningham) who continued to bring up the "type 1 or type 2" question.) 

I was hoping that you take a clinical approach, instead of one that generalizes diabetes. Type 1 diabetes is a very serious disease and shouldn't be put in that "lose weight and you'll save the healthcare system millions" category. You had an opportunity, and a duty, to educate the public about the different kinds of diabetes, and to help people understand what methods of treatment work best.

I was disheartened to see how this show was handled, editorially.  You two started off by saying that diabetes is an epidemic, one that will eventually bankrupt our healthcare system.  After discussing how insulin and glucose work in the body, you then cut to Laureen.  Laureen is 44 years old, on dialysis waiting for her second kidney transplant, and a double amputee.  You zoom in closely on her tears as they fall, as she laments how she has been dealing with diabetes for most of her life and wishes that she took better care of herself when she was young.  

(Back to the studio:  Oprah asks if Laureen was a type 1 or a type 2 diabetic.  Dr. Oz says she was type 1 diabetic.  "She's type 1.  She's not making enough insulin.  Type 1 is genetic."  I'll admit this is one of the first times I've ever heard type 1 and type 2 even mentioned in the same breath in mainstream television.  And then in the next breath:  "Diabetes is an epidemic.")

Why show a type 1 diabetic with serious complications, and then say that diabetes is the fastest growing disease in the country?  You need to specify that diet and exercise, or lack thereof, did not cause Laureen's type 1 diabetes.  Yet you want people to see the horrible effects of type 1 diabetes on her body and then say that a generalized "diabetes" is an epidemic.  Type 1 is not an epidemic.  Type 2 diabetes is.  And thanks to your mishandling of the facts, ignorance now joins the epidemic status as well.

Do you realize how frustrating it can be to live with diabetes, of any kind?  The testing, the injections, the complications, the daily fear of what may happen while you're driving or - worse - what may happen while you sleep?  The physical impact of diabetes is tremendous, as you both illustrated with your jar of glass shards, representing what an excess of sugar in the blood stream can do to blood vessels.

But do you realize how equally frustrating the stigma of diabetes is?  How we are so often viewed as having "brought this on ourselves" or as not working hard enough to prevent complications?  I've written in my blog countless times about the impact of diabetes and guilt, but you wouldn't understand that. You understand ratings.  You understand getting your name out there and having people click on your website ads and tune into your show.  You understand that showing a woman with missing limbs and streaming tears will make people sit on their couches and watch your show.  What you don't understand is how some of us felt, watching from our homes.  Opinions vary on how your show handled diabetes, but for me, personally, I feel like you just blended the worst of both kinds and then barreled into generic advice about generic diabetes symptoms and "remedies." 

Now please don't get me wrong:  I'm grateful for having more of a spotlight on diabetes.  For all the times I've wanted to see diabetes featured on the Oprah show, I feel somewhat guilty for criticizing how your portrayed the disease.  But it's hard for me to disconnect logic (i.e. not everyone has type 1 diabetes so not everyone will understand what information is correct or incorrect about diabetes) from my body's visceral response.  I know that during many points in your show, I felt so frustrated.  I wanted clarity to be delivered to the parts of society that are  unfamiliar with diabetes.  I wanted to have people watch your show and come away thinking, "Wow.  There's more than one type of diabetes?  It's not all about diet and exercise, but there are people who don't have a choice in this diagnosis?"  Instead, I'm afraid that people will continue to think that diabetes is just diabetes, and that there is no distinction between the causes or the treatments.  They'll think that all diabetes is controllable and treatable and potentially reversible.  That it just requires work, and for the diabetic to not be lazy about taking care of themselves. 

If one dollar of funding towards type 1 diabetes research is put back into a potential donor's pocket because they believe, as a result of your words, that all types of diabetes are the same and that all diabetics simply didn't take the measures to "prevent" their disease, this is your burden.

And for those of us with diabetes, we will have to carry the burden that society doesn't deem us "worth curing" because they think we did this to ourselves.

Sincerely,
Kerri Sparling
Type 1 diabetes for 23 years … and counting

NOTE:  To send your comments to Oprah, click this link.

February 04, 2010

What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

January 27, 2010

DiabetesSisters Weekend.

I wanted to do my part to help get the word out about the DiabetesSisters weekend that's taking place this coming May 22nd and 23rd in Raleigh, North Carolina.  Here are the details:

DiabetesSisters Weekend for Women

The First Annual Weekend for Women Conference hosted by DiabetesSisters and TCOYD will begin at 5pm on Saturday, May 22nd (immediately following the TCOYD Conference) in Raleigh, North Carolina and end at 6pm on Sunday, May 23rd. The Weekend for Women Conference will take place at Marriott City Center in downtwn Raleigh, North Carolina.

I love diabetes conferences, and in particular, ones that recognize the different needs of different segments of the diabetes populations.  Women with diabetes come head-to-head with some very unique diabetes-related issues, from periods to pregnancy to emotional hurdles, and having a weekend just for "us" sounds awesome.

I wish this was an event I was able to attend, but I'll hopefully be spending the first few weeks of May adjusting to life with my daughter (!).  If you are going to be in the NC area for that weekend, check out the DiabetesSisters Weekend for Women Conference! 

January 22, 2010

Looking Back: Rage Bolus, Anyone?

Today, we're traveling to Utah for the Sundance Film Festival.  And yes, I will be photographing and videoing the hell out of the festival, because I am so excited to see how this week plays out for my husband.  But in the meantime, as I board the plane and head off to Park City, I'm looking back to this post from October 2005, where the term "rage bolus" first appeared on SUM

(It made me laugh to read this post, because this was pre-dLife, pre-Chris and I getting married, and pre-so much stuff that's in play right now that I almost forgot that I hated my job back when I lived in RI.  And how much I still want to know how many licks it takes to get to the center of a Tootsie Roll pop.)

*   *   *

October 10, 2005:  Bit of a rantish post here. And there's no reason for this other than to vent frustration.

Last night, after I came home from the U2 show in Boston (more on that later), I was a little bit high. Rang in at 212 mg/dl. Okay, no problem. Bolus it up, go to bed. Woke up this morning at 200 mg/dl. Hmmm, no drop in the blood sugar levels. Not to worry, though, because it's a Free Shower - no infusion set - Day due to the fact that it's time to change the infusion set. Primed and inserted a new set with good ol' Charlene. She purred (beeped?) happily and I set about dressing for work.

RAGE BOLUS!!

Arrived at work. Hungry. Devoured one of those sometimes-delicious-but-most-often-just-gritty Kashi Whole Grain Granola bars. Bolused two units to cover, in accordance with the 1:10 ratio. Worked at my boring job for about an hour before realizing that I had already visited the bathroom twice in that time. Hmmm. Not normal. Tested, revealing 281 mg/dl. Whaaaa... I corrected this morning. I bolused for the crappy snack. And now I'm higher than before? Frustrated Kerri. So I Rage Bolus*. I just crank the shit out the pump, knowing full well that I only need about two units to come back down. I lace in 3.5 units. Sit back, satisfied.

Not done yet. I test again, an hour and half later, clocking in at 286 mg/dl. Fan-freaking-tastic. Good thing all that insulin made me higher. Because that makes f-ing sense. So I Rage Bolus again, sending 2 more units coursing through, Frustrated Kerri not really giving a shit that the "active insulin" tally on my pump is enough to cover dinner at Olive Garden.

So it's noon. I've been high all morning. I just changed my infusion set this morning. And I'm angry. I do not want to pull this set only to find that it's perfectly fine and I've wasted yet another expensive pump supply.

I'm riding this out. It's Me against the D. Who will persevere? How high will Kerri allow herself to rise before she pulls the set and starts over? How much Rage Bolusing will eventually catch up with Herself before Kerri bottoms out at 44 mg/dl? How many licks does it indeed take to reach the center of a Tootsie Roll Tootsie Pop? If you say three, you and that f-ing owl can go screw. It at least takes 125. I'm going to find out as soon as my Rage Bolusing catches up with me and I'm Trick or Treating at people's desks here at work.

*Rage Bolusing: Taking an uncalculated amount of insulin to correct a frustrating high bloodsugar reading. Also see: Panic Eating.

January 13, 2010

JDRF, Animas, and Dexcom Walk Into a Bar: Not a Diabetes Joke - An Artificial Pancreas.

Okay, so it's not a joke.  And it's not a bar.  But the JDRF, Animas, and DexCom have walked into a momumental agreement in efforts to create an artificial pancreas.

According to the press release, "The Juvenile Diabetes Research Foundation today announced an innovative partnership with Animas Corporation to develop an automated system to help people with type 1 diabetes better control their disease – the first step on the path to what would be among the most revolutionary advancements in treating type 1 diabetes: the development of an artificial pancreas, a fully automated system to dispense insulin to patients based on real-time changes in blood sugar levels."  

Alan Lewis, PhD, President and Chief Executive Officer of JDRF, is quoted in the release as saying, "JDRF will provide $8 million in funding over the next three years for this project, with a target of having a first-generation system ready for regulatory review within the next four or so years.” 

So what exactly would it mean to have an artificial pancreas?  More from the release:  “If successful, the development of this first-generation system would begin the process of automating how people with diabetes manage their blood sugar,” said Alan Lewis, PhD, President and Chief Executive Officer of JDRF.  'Ultimately, an artificial pancreas will deliver insulin as needed, minute-by-minute, throughout the day to maintain blood sugars within a target range.  But even this early system could bring dramatic changes in the quality of life for the 3 million people in the U.S. with type 1 diabetes, beginning to free kids and adults from testing, calculating and treating themselves throughout the day.'”  

Also, "DexCom, Inc., a leading manufacturer of CGM devices, will supply the CGM technology for the system to be developed by JDRF and Animas." 

I think this is a huge step forward for a new way of treating type 1 diabetes.  I've clocked over 204,360 hours with type 1 diabetes since my diagnosis over two decades ago, I've seen so many tremendous technological steps forward in treatment options for type 1.  Home glucose testing machines were "all the rage" when I was diagnosed, and there were only two or three insulin options for injection therapy.  Now, home meters are the norm, there are more insulin options and more insulin delivery options now than ever before, and continuous glucose monitors are part of my regular routine (versus before, if you had mentioned them to me as a kid, I would have thought you were from the moon). 

And now we're talking about an artificial pancreas?  A real one?  One that actually could be used in my lifetime, before I'm too old to care or too sick to benefit from it?  I believe this can happen, and I am so hopeful that these organizations and companies can make this a reality.

A cure is something I don't think much about.  It's something my heart has protectively hardened me against hoping for.  I know that reversing my body's inclination to attack its own islet cells could be a long time in coming.  What I do know is that I've been living with type 1 diabetes for almost my entire life, and I've battled hard to keep my body healthy and strong.  And now, I'm expecting a baby and have even more incentive to stay healthy for my child, so that I can be part of her life for a long, long time.  

If an artificial pancreas can help me minimize highs and lows in my blood sugars, that could help to protect my body from diabetes-related complications.  I could be safer.  My body could feel more "normal."  And my baby has a better chance of having me see her children born some day.

This press release has given me a reason to grin today.  And I'm excited to see how far these organizations can bring us all towards a better life with type 1 diabetes.

January 07, 2010

Zip the Cure: An Interview with Monica.

Zip the CureI'm not the first to mention Zip the Cure (nor do I have the cleverest title - that definitely goes to Saraaaaaaaaaa[no h]).  But like my fellow d-bloggers, I was contact by15 year old Monica Oxenreiter about her type 1 diabetes fundraising project, Zip the Cure

it's almost too simple!

"Zip the Cure has just one uncomplicated goal; raise $100 in every zip code for research to find a cure for juvenile diabetes."  One hundred dollars is a good amount of money, but it's not a bank breaker, especially if you get a few $10 donations from friends, coworkers, family members, cats ... you get the picture.  Doesn't take much to reach this goal per zip code.

I talked with Monica by email about her project, and wanted to give her an opportunity to raise her voice about Zip the Cure.  Take it away, Monica!

Kerri:  What's your connection to diabetes? 

Monica: I was diagnosed with Type One Diabetes on July 14, 1994, when I was thirteen months old. My older brother, John, was diagnosed three years later, on March 7, 1998, when he was eight. That means we have had diabetes for a combined total of twenty five years! We were immediately involved with the JDRF Walkathon, and were youth ambassadors. In addition, we were part of the Promise to Remember Me campaign.

Kerri:  What was the spark behind Zip the Cure, and how did you get started?

Monica:  My brother and I were both Pennsylvania delegates to the Children's Congress in 2005. While we were there, we met many people our age, from across the  country, who were dedicated to finding a cure. We wantedMonica of Zip the Cure to find a similar way to involve people from every state in the search for the cure. Zip the Cure is a national program that provides a fundraising opportunity accessible anywhere in the United States, on a local level. This is a way for everyone to contribute at their own level toward a much larger goal. Diabetes affects people in every zip code across the country; this is a way for people to work together to try to make a difference. We received approval from JDRF as a third-party fundraiser; we then obtained a 501(c) nonprofit status from the IRS and, with the help of John Coryat, developed an interactive map which went live on November 14, 2009. Since then we have sold 91 zip codes in 23 states.

Kerri:   How can other people get involved with Zip the Cure?

Monica: You can visit our website! The best way to get involved is to help spread the word or donate.  As with any grassroots effort, a donation of any amount is combined with many others to make an impact. People can collaborate with their communities to sponsor a zip code if $100 is too much for one individual. We are trying to work together to raise funds for a cure for diabetes.  Individually, the goal we have set may seem overwhelming, but with our efforts combined, it is within our reach.
 
Kerri:  What's your goal with this effort, and what can we, as a diabetes community, do to help?


Moinca: The goal is to raise $4.2 million for type-1 diabetes research, to find a cure. We would really appreciate it if you could sponsor your zip code or help us spread the word to others about our project. It does not matter where you are, because there are zip codes everywhere in the United States. Please visit our website, Zip the Cure, join our Facebook group, or email me if you want more information at monica@zipthecure.com.

Kerri:  Thanks, Monica, for sharing your story, and I'm hoping that you reach your goal!

December 06, 2009

Looking Back: The Boy at the Health Fair.

Today, I'm revisiting a post from 2006 (writing that makes me realize I've been blogging for a while now!), when I met a little boy at a Rhode Island JDRF event who warmed my heart - which I needed on this snowy, New England morning. ;)

*   *   *

I'd guess about ten years old.  Spikey blonde hair, pale blue eyes, chubby little kid face.

His mother stopped by the table we were manning at the School Health Fair, mussing with the pamphlets strewn about the blue plastic tablecloth.  The tri-fold cardboard display announced "Juvenile Diabetes Research Foundation" in bright blue letters.  Myself and another volunteer from the RI JDRF stood vigil at the table, handing out trinkets and informational packets, answering questions, and enjoying the sights.

"Hey buddy.  Would you like a t-shirt?"  My fellow volunteer leaned in towards the little blonde boy.

"Sure.  Thanks."  Shy blue eyes.

Turning to the mother, my partner asked, "Does anyone in your family have diabetes?"

She waved a green sweatshirt clad sleeve at her son.  "Yeah!  He does!  He has diabetes."

He looked at the floor and contemplated his untied sneaker. 

His mother laughed loudly and clapped him on the back.  "Some days he talks about it and some days he doesn't.  Today he just ain't talking!"  She picked up an issue of Countdown Magazine and flipped through the pages.Lost in the Crowd

"Here's your t-shirt."  Pale blue eyes met my own.  "I have diabetes, too, you know."

"Really?"

"Yeah.  I have an insulin pump."  I pointed to the pump clipped inside the pocket of my khaki skirt.  "I've had diabetes since I was about six."

"I've had it since I was seven."  He smiled and fingered the plastic sleeve around the blue JDRF bracelet.  "It's okay... so you have it, too."  He looked at all the other volunteers at the other booths. 

After a beat:  " You look just like the rest of them."

I stood there after he and his mother walked away, toting plastic bags filled with health fair goodies and JDRF magnets and pamphlets on bloodsugar management.   His blonde head blended in with those of the other kids until I couldn't find him in the crowd anymore.

He looked just like the rest of them.

November 30, 2009

A Piece of Embarrassment Pie.

Diabetes police - :(Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police - people who don't mean to be second-guessing me or asking me why I'm eating that, but still, they can't help but ask.  Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.

But other times, when I'm at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, "Why are you eating that?" ... I feel completely defeated.  And embarrassed.  Can't a girl have dessert without being questioned?  And when questioned, why isn't my explanation good enough to justify my actions? 

I'd like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny.

There's a difference, in my eyes, between choosing to be a diabetes advocate and being forced to explain myself.  I have no problem explaining to a stranger what the difference between type 1 and type 2 diabetes is, or what this machine on my hip is, or why my purse keeps BEEEEEEP!ing, or why I'm carrying more candy than an Oompa Loompa.  I actually like having these discussions, because I feel like people are only familiar with one kind of diabetes and one linear explanation for "the sugar," and I like knowing that I'm helping to educate them about the different kinds of diabetes, particularly type 1. 

What I don't enjoy is having someone look at me like I'm doing something wrong, just because they are unfamiliar with the ways that my diabetes needs to be managed (or the way I'm choosing to manage it).  I've written about diabetes and guilt before, and my inability to ever be "the perfect diabetic," so this isn't a new gripe.  But what's made me particularly frustrated is how there seems to be this common misconception that "it's only diabetes" and it's okay to pass judgment on my choices.  Diabetes isn't viewed as a serious disease to those outside the bubble of understanding, and complications for a young person with type 1 can thankfully be hard to spot, so maybe diabetes just looks too easy to some people.  Maybe we are just too good at masking how challenging it can be sometimes.

What would my well-meaning diabetes police say if I responded to their comment of "Whoa!  Having pie?  You can't have pie!" with a dissertation:

"Yes, I can have pie.  If I'm willing to go through the necessary motions, you know?  I have type 1 diabetes, and I wear this pump to give myself the insulin hormone that I don't make for myself anymore.  Supplementing all day long!  Unlike type 2 diabetes, which I know you're more familiar with, I don't make any insulin at all, so every meal is a tight balance of blood sugar monitoring, carbohydrate counting, and then dosing my insulin in accordance with the meal I'm about to eat.  Then, after the meal, I'll keep monitoring to make sure that I'm not going too high or too low.  It's about balance, but not about deprivation.  So yes, I can eat this.  And I will eat this.  And so long as I'm able to keep my numbers in check, my body shouldn't rebel after a piece of pie."

The thing is, I've given this explanation before.  Many times.  And I've explained diabetes to so many family members and so many friends (and just as many complete strangers) that it frustrates me endlessly to see that they aren't retaining any of the information.  And not only are they missing what I'm saying, but they're constantly - albeit gently - calling me out for my actions.  It makes me feel like such a crumb, like everyone is watching me while I eat.  (Nothing like that to make you feel paranoid.  Not to mention pregnancy weight gain, adding insult to injury.)  I know they mean well, and I appreciate their concern, but they need to listen to me when I answer them.  And they need to trust me when I give a clear explanation.  I'm not asking them to explain their food choices or exercise decisions or the details of their daily regimen - it's not my business. 

I'm sorry if I seem frustrated, but the scrutiny is making my head and my heart ache.   I don't have a track record of being irresponsible.  I don't exhibit signs of disease ignorance or depression or unawareness.   I'm taking very good care of myself, especially now with the baby growing inside of me and my focus turned to diabetes the majority of my day.  I'm tuned in.  I'm careful.  I'm doing my best.

Yes, I can have the pie.  Next time, I might skip it for reasons all my own.  But whatever my decision, please don't assume you have a right to question it.  Until you are living with type 1 diabetes, you don't understand.  And I'm not expecting you to understand - ask me what you want to ask me.  I'm more than willing to talk to you about this. 

But if you don't have a question, and you only have those comments, I'm just respectfully asking you to be quiet.   Please.  I've had enough.

November 14, 2009

World Diabetes Day.

Happy World Diabetes Day to my friends in the diabetes community!!!

November 11, 2009

SUM Diabetes Stuff to Share.

Oh, the diabetes interwebs have some things to share ... so here's a few I wanted to make sure I passed on to you guys.

Over the weekend, I saw a sneak peek of the final Making Sense of Diabetes video, brought to us by the Diabetes Hands Foundation.  (But for Gina and I, in the hotel lobby, it was bought to us by Manny and his laptop.)  I have to admit - and these aren't the pregnancy hormones talking - this video brought me to tears.  Not necessarily because it's depressing, but more because it's inspiring.  The people featured in this video are people with diabetes, and they're sharing the intimate details of what their life is like.  I'll admit it, I cried a little.  And Manny and Gina hugged me.  (Whoa, holy digression but bear with me, I'm an emotional mess this morning.  But the point is:  I needed a hug after watching that.)  Enough chatter:  Watch this video.  You'll find inspiration, even if you aren't looking for it.

Also, last night I had the chance to "hang out" with Chris from A Consequence of Hypoglycemia on his podcast, Just Talking.  Admittedly, I thought it would be tough to fill an hour with "just talking," but Chris (iam_spartacus) is cool and keeps the conversation flowing, despite the fact that we've never actually spoken before.  It's an hour's worth of random chatter (including some sound-effect editing over the less than desirable language), touching upon diabetes-centric stuff, the Red Sox/Yankees battle that wages in my own home, #voltron, BSparl, Buried, stupid Siah, and my grandmother's obsession with Orville Redenbacher. (Please excuse the phone that keeps ringing in the background.  It was making me NUTS.)

And Elizabeth Edelman (from Diabetes Daily) has created a diabetes cookbook just in time for the holidays.  It's called Thanksgiving with Diabetes: 17 Lower Carb Recipes Your Family Will Love and it is AWESOME.  The recipes look delicious, the photos are gorgeous, and Elizabeth Edelman is a staple of our diabetes community, so please visit Diabetes Daily and check out this fantastic endeavor. 

That's all I've got.  I'm out!

November 09, 2009

Two Heartbeats on D-Blog Day.

Diabetes Blog Day, 2009.  Holla ... and whatnot.The first time we saw him (or her), it was at the emergency room back in Connecticut.  We were only seven weeks into the pregnancy and barely had caught our breath from finding out when the bleeding happened and I panicked.  We spent five hours in the emergency room, poked and prodded and with an IV line at the ready, only to finally be wheeled into the ultrasound room. 

"Just relax, Mrs. Sparling.  And we'll take a look and see if everything is okay."

And the screen switched on and Chris and I saw our baby's heartbeat, strong and steady and fast, beating inside of me.  Everything changed forever, even though nothing had changed yet.

The bleeding stopped that day, and we moved forward, cautiously, frightened, and so hopeful.  A few weeks later, my mother and I (Chris was in LA on business) were at my Joslin appointment for the first "official" ultrasound, hoping to see the baby growing strong and steadily.

"Oh, there it is.  There's your baby.  Those parts there at the end?  The feet.  Those are the little feet, ready to kick."

And I watched as the teeny, hamster-looking creature inside of me kicked his little feet.  So small.  So ... surreal.  I couldn't wait to see him again.

Two weeks ago, Chris and I were at the Joslin Clinic for the first of a few second trimester ultrasounds, and from what my eight months pregnant best friend had already told me, this ultrasound was very different than the first one.  "It looks like an actual baby at that point," she said, her blue eyes wide.

Chris and I talked with Dr. T, the OB/GYN, for a while about how I've been feeling, my numbers, and overall how the pregnancy is progressing.

"I feel good.  Tired a lot, and doing a bit more traveling than I'm used to these days, but I'm feeling better now that I'm in the second trimester and past that fall-down exhausted bit from the first couple months."

"Good, sounds like you're doing great.  So ... wanna see the baby?"

"Yes!"

I hopped up on the examining table and Chris took a seat by the ultrasound monitor as Dr. T. moved in with the external ultrasound wand.  "A little bit of this warm gel right on your belly and ... okay, there we go!"

On the screen was a baby.  A whole baby, all big-headed and waving arms and kicking legs.  Our baby.  Hands with fingers, legs with knees.  This baby looked like a real baby.

"Oh my God, is that him?  He's so big!"  I couldn't believe this was the same little hamster from just a month or so ago.  He took up the entire space of my uterus, which was a big change from all the room he appeared to have a month ago.  Now he looked like he was out of room in there (and I knew that meant my own expansion was coming fast).

"Yes, that's the baby.  Calling him a 'him,' are you?  We'll find that out next month, right?"

I watched as the baby turned and squirmed, raising his arms up and his body lurching just a little bit every few seconds. 

"Dr. T, does he have the hiccups in there?"

She looked closely and smiled.  "Yes, that looks rhythmic and steady.  Looks like hiccups to me.  Would you like to hear the heartbeat?"

She turned a knob on the ultrasound machine and suddenly the room was filled with a steady whump whump whump sound - the sound of our child's heartbeat.  It was incredible, hearing my own heart thudding in my ears with excitement as my baby fluttered along inside of me.  Chris held my hand as I brought the other one up to my eyes to catch the tears that collected there.

Two heartbeats, both inside of me.  

And today, on D-Blog Day, I wanted to share this story with you guys.  You have been with me from when Chris and I first moved in together, back when the dream of a heartbeat other than my own was something I only hoped to one day hear.  Now, every day that passes brings BSparl closer and closer to meeting his mom and dad.

When I was diagnosed, they said that children would be near impossible for me.  And while I know that nothing is certain until that baby is in my arms, I am already so proud of where we've come, as a Sparling family and as an even larger diabetes community.  We have hope now, hope for lives that are wonderful and meaningful, despite diabetes.  Diabetes is a heavy load to carry, but with the support we get from this community, the burden is so much lighter.

Happy D-Blog Day, you guys.  And thanks for being part of my extended family.

November 03, 2009

Taste, Now With More Math!

I think this video is brilliant, and I'm not just saying that because I adore these two fellas.  George and Scott teamed up to create a Making Sense of Diabetes video for TuDiabetes and they focused on taste ... showing how we, as people with diabetes, don't get to taste much of anything without embarkng on some kind of blood sugar testing, carb calculating, math confusion adventure. 

As I said - brilliant.  These guys raise awareness using humor, but boy does this message resonate. See for yourself:

October 31, 2009

Looking Back: Reflections on Halloween

Happy Halloween!  Today, I'm revisiting one of my first columns for Generation D, written back in 2006 about a Halloween experience from when I was in middle school.   (Believe me, it's safer than watching the Halloween video I did last year, before I figured out how to edit and instead rambled on and on and on and ... you get it.) 

Happy Halloween!!

*   *   *

More Than Candy and Costumes

Dressing up was not an issue. I wore my silly costumes proudly and they were always homemade. I was a fairy godmother one year. I was a gypsy for about three years running. Another year I was Bo Peep, complete with sheep.

Then one year, I was diabetic.

When the central focus of the holiday is eating candy, what’s a kid with diabetes to do?

I can’t admit that I remember it being a big deal, but my mother will recount that first Halloween, when she leaned in to give me a kiss and she smelled chocolate on my breath. “I thought it would kill you,” she admitted. That panic, that first taste of unadulterated fear was something my parents felt so I wouldn’t have to. I was just a little six-year-old kid. I was more concerned about whether or not my gypsy skirts were getting tattered on the edges from running through the streets on Halloween night.

In the first few years after my diagnosis, the candy was monitored and handled by my mother. I had a few pieces, a little bit was stashed away as “reaction treaters,” and my brother and sister bartered with me for the rest. My older brother, little sister, and I would sit on the floor after trick-or-treating and pour our pillowcase collections of candy out onto the floor, separating the candy into genre piles – one for chocolate, one for hard candies and gum, and a potluck of the non-candy items like pencils and stickers. Somehow, I usually ended up with all the pencils and stickers as my brother and sister grinned at me with chocolate-stained mouths.

I used to sneak pieces of candy, though. I do remember finding the “reaction treater” stash and cramming five or six mini-Snickers bars into my mouth. The chocolate taste was sickeningly sweet and tasted like a melding of delicious deception. I didn’t get caught but the feeling of guilt I experienced is something I can still feel deep in my stomach if I think about that moment too much.

So now I was a diabetic trick-or-treater. Couldn’t tell by looking at me. In my group of friends, you couldn’t pick me out of that crowd. Which is probably why the cop used his police cruiser intercom to harness my attention.

I was about nine years old, trick-or-treating with my friends in one of their neighborhoods. There were seven or eight of us and we were all costumed and toting pillowcases to carry our bounty.

The headlights came up behind us first, then the swirling red and blue police lights. The intercom squealed on.

“Kerri Morrone?”

We stopped dead in our tracks. No one turned around. My friend Christie whispered loudly to me, “Did he just say your name?”

“Kerri Morrone? We’re looking for Kerri. Is she with you guys?”

My blood ran cold. What could I have possibly done? Did they know I talked during the D.A.R.E. presentation and they were mad about it? Did they find out I had pinched my sister on the arm for telling on me? Oh my God, did they know I sneaked candy every Halloween?

Like a convict on the run finally giving in, I turned around slowly and raised my hand over my head.

“I’m Kerri.”

The intercom squealed to life again. “Please come over to the car.”

I shuffled my shoes, now filled with lead, toward the police cruiser. My friends stood back, clutching their pillowcases and staring.

The window of the police car lowered and revealed the smiling face of Officer Mark, the young D.A.R.E. officer who visited my middle school every fall.

“Hi, Kerri. Sorry to scare you.” The grin on his face was warm and friendly. “You know, my wife is diabetic. She likes this special sugar-free candy. I thought, since you were diabetic too, that you might like some.” He reached to the seat beside him and handed me a white box with a black and orange ribbon tied around it.

Are people aware of the very moment they affect your life forever? The moment that they make you feel less alone?

“Thanks, Officer Mark. Really, thank you. This is awesome. I thought I was in trouble, though!”

His grin became even wider. “Yeah, well you’re not. But make sure you and your friends stay out of it!” He leaned out the window and gestured toward my friends. “Be careful, girls! Have a good night!”

“Bye, Officer Mark!!” they all called in unison.

The next year, I dressed up as a gypsy ... again. I was also still a diabetic.

I was okay with being both.

*   *   *

Have a safe and happy Halloween, and don't forget - NaBloPoMo starts tomorrow.  So does NaNoWriMo.  Who's in??

October 29, 2009

Diabetes Can be a Five Letter Word.

... and that five letter word is "guilt." 

At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise.  "But the complications of well-managed diabetes?  None." 

And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me.  Well-managed diabetes produces no complications?  So diabetes-related complications are just the result of an inattentive "host," or "slacking off?"  It's not the fault of diabetes itself?

The direct relationship between diabetes and guilt has always made me feel ... well, guilty.  I'm not familiar with what it's like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well.  And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of "You did this to yourself."  It sounds harsh, but I hear it all the time.

It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to.  "The pump does it all for you, right?  So diabetes is like, simple to manage?"  Or "Just follow the rules and you'll be fine, right?  Bad stuff only happens to people who are lazy and don't take care of themselves."  I've never, ever heard someone ask a person living with a different disease - "Oh, what did you do to make this happen?" - but I've heard someone ask me about my diabetic retinopathy and respond, "Well, you must not be controlling your diabetes very well."

I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it.  I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should.  Efforts are made to best manage my health, but the fact remains that I have a disease.  I don't classify myself as "sick" and I don't view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin.  As a result of this, the blood sugar homeostasis of my body has been forever disrupted.  And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn't a cure.  My pancreas remains busted, so I will never be in "perfect diabetes control."

Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of "something I did."  I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault. 

Back in March, I found this piece of paper wedged into an old diary of mine from middle school:

Diabetes and guilt - nasty combination.

Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn't play a role in any of the outcomes.  "If I want to live:" is how that piece of paper starts off.  What a heavy burden for a child with diabetes.  High blood sugars?  My fault.  Spilling protein into my urine?  My fault.  Any threat of complication?  My fault?  Diabetes wasn't the cause - I was, apparently.  (Granted, many times highs and lows were a result of being a rebellious teenager or eating a 'forbidden food,' but were it not for the diabetes in the first place, it wouldn't be an issue.)

I don't agree with this mentality, and I refuse to subscribe to it.  Type 1 diabetes requires daily maintenance and diligence, but even if I follow "all the rules," there can still be complications.  My genetic make-up plays a role.  My family history plays a role.  And of course, my actions play a role.  This isn't a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health.  I have always tried to remember my role in this relationship with diabetes, but I can't fool myself into thinking that if I just work hard enough, my body won't ever exhibit diabetes complications.  If my eyes start to bleed, it's not because I didn't care enough.  Things happen, and I need to be able to roll with whatever life dishes out.  I live with diabetes every day - I don't need the guilt.

Because at the end of the day, diabetes complications are the result of diabetes.

October 27, 2009

Diabetes Linky Bits: What I've Been Reading.

Due to some recent traveling, I've been falling way behind on my fellow diabetes bloggers.  But there have been some posts in the last few days that I think are must-reads.  So today, while I finish up my visit in Philadelphia at the ePatient 2009 conference, I wanted to share some of my favorite posts from the diabetes blogosphere:

Diabetes blogs rule.Lee Ann at The Butter Compartment is a longtime type 1-er and a lady who understands the trials of fitting an insulin pump into a fancy dress moment.  Thanks to some Twitter tips and some good, old fashioned ingenuity, Lee Ann managed to McGyver her way into a fashionable moment.  (And personally, I never underestimate the power of duct tape.)

Diabetes blogs rule.Wendy at Candy Hearts stumbled upon a Letter to the Editor from some idiot who saw a little boy take an injection at Burger King.  Apparently, the man who wrote the letter was horrified  by the drug taking at the table and felt the need to write to his local paper.  And while Wendy admits to having no idea what was in that syringe, she wrote a response to The Burger Grump, outlining why certain people may need to take an injection before eating (namely, did the kid have diabetes). 

Kelly at Diabetesaliciousness added her two cents, as well.  What's your take on this Burger Grump?  Do you feel that a PWD should be able to inject in public?  (Personally, I think it's no different than blowing your nose at the table.  If you can keep it clean and sanitary and discreet, it's fine.  People are allowed to manage their diabetes in public, so long as they aren't creating unsanitary conditions for others.)  If you want to chime in with your own letter to the editor, click on this link and visit the Pocatello Idaho State Journal website.

Diabetes blogs rule.And those of us here on the East Coast apparently missed an AWESOME event, at last week's TCOYD in San Diego.  Manny touted it as the best diabetes conference he's ever attended, Cherise gave it a definitive thumbs up, and George agreed.  I've never attended one of the TCOYD conferences, but apparently there's one in my homestate of Rhode Island next September, and BSparl and I will definitely be in attendance.  Will you be there? 

What have you been reading in the diabetes blogosphere?

October 22, 2009

Diabetes, Lovenox, and Bathroom Jane Fonda.

The flight to Las Vegas from Boston is a long one – six hours on the way there and five on the way back.  I talked with my doctors before taking the flight, and being pregnant, I’m dealing with an increased threat of deep vein thrombosis.  The Factor V Leiden gene in my body is also a red flag, so these longs flights caused some concern for my medical team.

“We’re not worried so much as we have some rules for when you’re flying. The first is that you need to get up and move around about once every hour to keep your circulation steady and your legs moving.  And the second thing is that we’d like you to take Lovenox on the days that you’re flying.  That will help combat the Factor V risk.”

Take a shot?  No problem.  At least that’s one thing I can commit to without fear.

So about an hour and a half before my flights took off, I snuck into the airport bathroom and pulled out the pre-filled syringe of Lovenox.  Lovenox is an anti-coagulant drug that helps to prevent blood clots.  I don’t know much about it, other that it’s safe for pregnant women to take and it was one of the conditions set forth by Joslin, so I pretty much do what they say these days.  I’ve never taken anything like it before, so Wednesday evening was my first time.

Fellow diabetics, I just need to say that we have it good with our teeny, ultra-fine needles.  This Lovenox needle was clumsy, long, and thick.  “Inject it right into your abdomen, where you’d normally take an insulin injection,” the doctors recommended, so I did just that.  But it sucked a little bit.  One of the side effects of the injection is bruising and soreness, and they’re not kidding.  Within 15 minutes of taking the injection, a deep red thumbprint popped up on my abdomen, tender to the touch.  

But that seems to be the only side-effect I’ve experienced.  Except for a little bit of paranoia.  And now, a few days after the trip, I have the itchiest, red rash at my injection sites. 

Once a doctor tells me that I could be at risk for something, I do what I can to help mitigate that risk.  For these flights to Las Vegas, I took the Lovenox injections and made sure I was up and about once an hour, but I also did something else.

Every time I went into the airplane bathroom, I did some weird kind of calisthenics.  Thanks to BabySparl, the need to pee is hourly (making me test my blood sugar all the time, wondering, “Is this because of Baby or am I high?), so I’d use the ladies’ room and then face the mirror.  And then do this bizarre mix of high knee raises, running in place, and stretching.  Thankfully, being barely 5’4” gives me enough room to move around in there, but I felt like a tool.

“And stretch!  And stretch!”  I heard Jane Fonda in my head as I faux-exercised in the airplane bathroom.   

I prayed that the stewardesses couldn’t hear me thrashing around in there.  How the hell would I explain that?  “I don’t want a blood clot so I’m doing a little dance here in the bathroom.  That's legal, right?”

The itchy frigging rash from the Lovenox injections.
 
The flights were fine.  (If you don’t count the flight from Boston to Las Vegas, which included an extra hour on the trip due to a strong headwind, expired food, not enough meals for passengers, no movie, and no working radios.  US Airways, you sucked it up on that one.)  Lovenox was a success.  And now I feel like I’ve managed to fit in a workout, even at 35,000 feet.  But I’m curious to know if anyone else has ever taken Lovenox, or another kind of anti-coagulant.  And if anyone has ANY tips at all on dealing with this frigging itchy rash.  It's starting to go away, and I know it's just part of the side-effect fun, but it's making me scratchy-crazy. 

It’s all new to me, and I’d appreciate any feedback from someone who’s been there.  (And if you have airplane exercise tips, share those, too.  I’m heading to Florida in two weeks and am wondering how I’m going to embarrass myself on that plane, too!)

October 19, 2009

BlogWorldExpo: Medical Bloggers Make Their Debut.

Last week at the BlogWorldExpo new media conference in Las Vegas, Nevada, the medical blogosphere staked its first claim, with the very first medblogger track taking place on October 15th.  The medblogger track was co-sponsored by Johnson & Johnson and MedPage Today, and they flew us out there and put us up, which was quite jazzy of them.  (Actually, the whole thing started with Kim on Emergiblog raising her voice.  She got this ball rolling, big time.)  I joined the BetterHealth crew and represented for the patient bloggers.

And by “represented,” I mean that out of four different panels totaling 16 participants, I was the only patient blogger panelist.  I stood out as the “one without a medical degree” and there are no initials after my name, but I did my best to show the medical blogosphere that patients are a powerful voice in this community, and that we are a growing group in the blogosphere as a whole.

I participated on the “The State of the Health Blogosphere:  We’ve Come a Long Way, Baby” panel, with fellow panelists Kevin Pho of Kevin, MD and Nick Genes of Blogborygmi, moderated by the always-fabulous Kim McAllister of Emergiblog.  And we went first, which was both nerve-wracking and exciting - nothing like kicking off the BlogWorldExpo medblogger track!

Photo courtesy of Doctor Anonymous.

We discussed how we all started in the blogosphere, citing who was already out there when we started our blogs (and I mentioned good ol’ Scott Johnson as one of my favorite originals!), and how the public perceived blogs back in the day.  (Back in the day being like 2004/2005 – the Internet is a time warp.)   I talked about how I wanted to find others living with diabetes, instead of constantly coming across the internet health horror stories, and when I couldn’t really find what I was looking for, I decided to create it for myself. 

“It took me a while to say the word ‘blog’ without stretching out the ‘O’ a lot.  ‘Blaaaaaaaaaaag.’  No one I knew wrote a blog, and they didn’t know what a blog was.  It seemed a little bit like a joke – who the heck is going to want to read this online diary stuff?  But it turns out that I wasn’t the only one who was looking for other people living with diabetes.  And once the comments started, and the emails from complete, warm-hearted strangers started coming in, I realized the impact that patient blogs could have on other patients.”

“But I also realized the intense impact that blogging could have on me.  It made me feel like I had a place to share the emotional side of my disease, emotions that I battled constantly but doctors didn’t really ask much about.”

It was a very cool experience, sitting there as a panelist with Kevin and Nick, two influential medical bloggers who represent the practitioner perspective with class and confidence, knowing that patient bloggers are now part of this conversation.  It’s not just a bunch of doctors sitting around, talking about our diseases and our conditions without having a portal into what real life is like with that disease.  Now they can tune into our patient blogs and get that perspective, one that could help shape the way they deal with their patients.  Our voices, as patients and the caregivers of patients, are crucial in the greater medical blogging discussion.

I missed the memo on the crossed arms thing.

There was also a lot of discussion about Grand Rounds, the premier medical blog carnival created by Nick Genes.  Everyone on the panel pretty much agreed that Grand Rounds were an extremely effective way to get a weekly snapshot of the best of the medical blogosphere.  “I can’t remember where I first stumbled upon Grand Rounds, but it seemed like the perfect way for me, a diabetes patient blogger, to connect with other medical bloggers outside of my diabetes bubble.  It was like literary networking.”

Continue reading "BlogWorldExpo: Medical Bloggers Make Their Debut." »

October 06, 2009

Making Sense of Diabetes: It's So Literal, I Love It.

I have a lot to catch up on, but something I wanted to post about ASAP was the Making Sense of Diabetes contest that is happening at TuDiabetes, in preparation to raise awareness of World Diabetes Day (coming up fast on November 14th). 

According to the release, "We are seeking video entries that tell about the impact diabetes has on our lives through one of the five senses: sight, hearing, taste, touch and smell.  Diabetes affects our lives in ways we may not always realize. We smell insulin, savor glucose tablets, feel the poke of our lancing devices, react to our doctor’s words and see the life ahead of us."

They're looking for video submissions, and there are some really cool prizes on tap for winners.  Not to mention the emotional boost that creativity like this can provide - which, in my mind, is huge in helping us deal with diabetes.  For details on how, and what, and when, to submit, check out this entry on TuDiabetes.

I'm working hard to unpack and find my Flip camera so I can do a submission, but in lieu of my own video, here's a post from back in 2005 that touches upon this theme.  In re-reading it, now over four years later, it makes me happy, in that bittersweet sense, to see how many of these goals I've accomplished, even with diabetes:

 What does a diabetes cure taste, smell, look, feel, and sound like to you?

The Five Senses.

I want a cure tonight.

I want it so badly I can taste it tonight. It tastes like black raspberry ice cream from St. Claire’s Annex in Watch Hill, all creamy and cold. It tastes slightly salty, like my skin after a day at the beach. It doesn’t taste at all like airplane glue or sweaters on my teeth after a few hours of a high bloodsugar. It doesn’t taste bitter, like the chocolate flavor on the back of my tongue after sneaking Halloween candy as a child.

I want it so badly I can feel it tonight. It feels like his strong hands on my shoulders, easing out the stress of the day. It feels free and almost scary, like standing on the top deck of the Block Island Ferry and leaning over just that little bit as the boat cruises towards shore. It doesn’t ache, like my stomach as I drive to Joslin or the eye doctor. It doesn’t burn, like my conscience often does when I think of the unfocused, foolish choices I’ve made regarding my health.

I want it so badly I can hear it tonight. It sounds like Siah sleeping on my pillow at night, gently purring in my ear. It sounds like that first cry my nephew wailed, piercing the night with his brand new voice. It doesn’t sound like the beep beep beep of Charlene as she counts up the correction tally. It sounds nothing like my voice shaking as I admit to the precursors of complications to my doctor.

I want it so badly I can smell it tonight. It smells like Ivory soap. It smells like a dozen unexpected roses brightening a dreary office. The scent isn’t even reminiscent of that dentist smell emitting from a broken bottle of insulin. It smells nothing like fear.

I want a cure so badly I can almost see it tonight.
It looks like my healthy body.
It looks like my healed fingertips.
It looks like my smile.
It looks like my pump, tucked inside an old jewelry box for the rest of my life.
It looks like my wedding.
It looks like my child.

It looks like my future.

September 29, 2009

Inspired by the Parents.

Parents of kids with diabetes - it's a full time job.Last night I had a chance to sit with some parents here in Norwalk and talk about our collective experiences with diabetes.  These parents were taking care of children with diabetes, ranging from the newly diagnosed three year old to the newly diagnosed 13 year old, and everywhere in between.  High school angst, the issues of disclosure, the pursuit of "perfection," and all those other issues that parents of kids with diabetes, and the kids themselves, are dealing with.

"I was invited here to talk about how to raise a child with diabetes without losing your mind.  But I'm not really qualified to talk about that sort of thing, to be honest.  I'm not the parent of a diabetic child.  I am the diabetic child."

The parents at this group were wonderful, all actively engaged in their child's health, just trying to make sense of what diabetes doles out every day.  We were a small group - about 12 of us in total - so the conversation flowed pretty smoothly and comfortably.  And we hit upon some very intimate issues.

Like menstrual cycles and their impact on blood sugars.  (Remind me again why I'm talking about puberty and my female hormones with strangers?)  Or the dodgy things I did as a kid to lash out at my diabetes or my parents or at life in general.

I admitted to hitting the old school glucose meters with a touch of rubbing alcohol so that the result would come up lower.  I also admitted to knowing that my mother hid ice cream sandwiches in the frozen vegetable boxes, but I ate them despite her efforts. 

"I wasn't the best kid, and definitely not the best kid with diabetes, but I made it through okay.  And my parents and I?  We still talk.  And we still like each other."

They laughed.  

"What advice do you have for parents who are dealing with teenagers?  What's on the 'don't ever say that,' list?"

And the only thing I could think of was the epic "We."  

"It's just that one pronoun.  The 'we.'  We need to test our blood sugar.  We need to take our injection.  We have diabetes.  This always drove me nuts because unless my mother was testing her blood sugar or my father was taking an injection, they weren't diabetic.  They didn't know what the lows and the highs felt like, only what it felt like to watch the highs and lows and to feel those moments externally and emotionally."

The group nodded, understanding.

"But it wasn't until I was older that I realized the 'we' concept did apply.  It wasn't just me.  It was all of us, as a family, living with this disease.  And even though I was the one who had diabetes, my parents were dealing with something, too.  Diabetes has a lot of different sides to it, and it doesn't just affect the person who actually has it.  So it is a 'we' thing.  We live with diabetes, as a family.  And it took me a long time to realize that."

One of the parents piped up.  "How long?"

"Like ... yesterday morning?  Maybe Friday, at the earliest." 

She laughed.  Another parent asked, "When will my kid figure that part out?" 

"I don't know, honestly.  Everyone's experiences vary.  For me, diabetes wa a dragon that we, as a family, fought together.  We didn't fight one another, but it was us against IT.  And now, I'm a married woman with a husband who goes to the doctor with my instead of my mom and dad going, and my mother has no idea how this insulin pump works or how the CGM works or what the hell 'basal insulin' is, but she still has the same protective instincts, and still works hard to take care of me."

"Even just this past Friday, at my Joslin appointment, I saw this CDE I'd never met before.  This lady was critical of every number, every moment of my management, and yelled at me for doing too much while she yelled at me for not doing enough.  I was feeling pretty emotional after 45 minutes of this, so I went to take a break to calm down, leaving the CDE and my mother alone in the room together."

"And I guess while I was gathering my wits in the bathroom, my mother, who had been sitting there quietly and watching the fireworks, leaned towards this CDE and said, 'It's been a long, emotional day.  And you are supposed to support her, not rip her apart.  I think you should tone it down a bit, don't you?'"

"I guess you don't ever age out of being the parent of a kid with diabetes."

Diabetes is a journey, and for some of these parents, they've been on it for many, many years.  For others, they are just beginning to take those first steps.  And for me, with more than two decades with type 1, it was beyond amazing to see them gathered together around the table to find answers, find support, and find inspiration.

September 14, 2009

Invisible Illness: Type 1 Diabetes.

If you just snapped a quick picture, you wouldn't see it.  Not unless you were looking for the small signs, like my insulin pump.  Or my spotted fingertips.    

Type 1 diabetes isn't something you can see on me.  It's not an illness that, at this point in my life, comes with any constant external symptoms.  I am fortunate enough to not use a wheelchair or need vision assistance devices.  You can't see my disease, even though it's something I manage every day.

I seem "normal."  (Stop laughing.  Let me use the word normal for the sake of this blog post, at the very least!)  I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.

And I am happy. 

But my good health is not without great effort.

Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter.  Every meal I've eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose.  And every night has my finger pricked by a lancet before my head hits the pillow.

This isn't a pity party.  Not by a long shot.  My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I'm now wearing medical devices 24 hours a day, every single day.  And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn't like the idea of a small child dealing with this disease.  

Kids are fun to cure.  They're cute.  And their futures seem worth investing in.

What confuses me is how quickly people forget.  Type 1 diabetes became a part of my life a long time ago, and I don't remember even a snippet of "the before."  But even though I've lived very well with this disease and kept it from defining me in any way, it's still here.  And it's still something I deal with every day, regardless of how well or poorly controlled.  But just because I'm no longer a little kid with the bright, shining future, am I any less diabetic?  Any less deserving of that cure?  Just because you can't see my disease, and because I seem to have it under physical and emotional control, does not mean it's past the point of deserving a cure. 

Here is a vlog post that I did back in February about vlogging during a low blood sugar and how "diabetes can look so normal yet feel so rotten."   It's a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:

Children with diabetes grow up to be adults with diabetes.  And all the while, we're still ready for progress. And for hope.  And for a cure.

This week, September 14 - 20th, is Invisible Illness Awareness Week.  And today, I'm raising my voice for type 1 diabetes. 

September 01, 2009

No Moral Lifeguard on Duty?

How can we help?I'm refraining from using the words that are REALLY flying around in my head regarding this discrimination issue.  But believe me, Yosemite Sam ain't got nothin' on me this morning.  My whole brain is "frick-a-frackin' ..."

Here's the story that was posted on TuDiabetes by "ShipAddict," a woman who wears an insulin pump.  This copy is taken directly from her posting, without any editing: 

"Has anyone besides me ever been kicked out of a pool for wearing a pump? I received a letter from my HOA board to refrain from using the pool because they consider my pump to be a port and I will infect our entire community for using the pool. Also they think that the wound site will spread infection through out our community. They photograph me using the pool or send a board member down to the pool to stare at me or will have our community attorney sit down at the pool to intimadate me to stop using the pool. I am recovering from a stroke and need the pool to help my paraylis. Also my heart is bad and the stress they are causing me makes me literally sick. But I own a share of the community and pay 245.00 a month for a maintance fee that gives me access to the pool. Any ideas what I should do? Animas 2020 is my pump and on page 95 of the user guide it reads that it is safe to use the pump while swimming. I have removed the pump and capped it off just so no one will yell at me or send me another letter."

This woman was kicked out of the pool because she was wearing an insulin pump?  She's recovering from a stroke and using the pool as part of her therapy, she's wearing a waterproof Animas pump, and she's minding her own business?  But she's being intimidated by the community attorney (by the way, what kind of community has an attorney prowling around the pool?) and photographed using the pool, as if she was doing something wrong?

I know I live in a bubble.  And I know that not everyone understands the medical devices that we wear to manage our diabetes.  But would you tell a child with a cochlear implant that they can't use a pool?  I am really tired of people assuming that our efforts towards good control and good health are something to ridicule, judge, and persecute.  I'm not sure what to do about this story, but I want to lend my support, and I'm hoping that we can help ShipAddict feel the support of our community as a whole.  What can she do to protect her rights? 

Hey Animas - this lady is using your pump.  Anything you can do to rally behind her?

Hey Media Outlets, interested in doing a story on this to help raise awareness for the rights of people with diabetes?

Hey ShipAddict, we've got your back.   

(And hat tip to Jeff, who let me know about this story.)

August 03, 2009

A Diabetes To-Do List.

I stood there with my best friend as she rubbed her pregnant belly.  The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.

And I felt oddly self-conscious with my lack of roundness.

Last Friday was my first official appointment at the Joslin pregnancy clinic.  It's located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point.  I'm not pregnant, and we aren't trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health. 

Sigh.  This all sounds redundant, even to me.  I've talked the Big Talk before.  "Oooh, look at me!  I'm going to really wrangle in my numbers and have an A1C you can bounce a quarter off!"  And I'm all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in.  Like work.  And stress.  And getting to the gym.  And social stuff, like hanging out with my friends and going to RI on weekends.  Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust.  My workload piles up.  And my stress levels skyrocket.

I'm so frustrated because I want to have a career.  And I want to have a baby.  (I'd also love some tight control of my diabetes, too.)  These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself.  Slacking off is easy, and frustrating, and not healthy for me or any baby I'd like to have.   

But I also realize this is one of my biggest hurdles when it comes to pregancy planning - the whole "sticking with the pre-program."  This becomes more and more obvious to me when I go back and re-read old blog posts where I'm so excited to get back into better control, only to be derailed by those Other Things.  So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.

"I need help being held accountable."  

They didn't quite hear me at first.  "We can do some tweaking, and in a month or two, we can revisit your A1C and see if it's lower and then we can give you the green light for pregnancy."

I knew I needed more than that.  I had to be completely honest. 

"Guys, I really need to be held accountable.  I know this sounds crazy and I seem very compliant, but I have trouble following through.  I'm great out of the gate, but I lose steam after a few weeks and I'm at the point where it isn't good enough anymore.  I'm out of excuses.  And I'd really like to join the ranks of those pretty pregnant ladies out there.  Please help me?"

And they listened.  We spent the rest of the day working out a plan for me.  One that will actually make a difference.  One that will get me there.

I'll be in Boston every three weeks until I'm pregnant.  This is a huge commitment but I need to make diabetes a priority without fail.  I want this.  I want to succeed at this more than anything else.  I'll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together.  Chris is in charge of my meals, in that he'll be helping me plan my day, food-wise, and he'll be counting carbs and measuring things for me. I'll be eating relatively similar items every day so I can manage the trends and control them.  I'll continue to test all the live long day and wear the pump and the CGM, but I'll actually use these devices to their fullest potential, instead of just going through the motions. 

With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints.  Being sent out for three or four months is too much for me.  Obviously, because I burn out well before my follow-up appointments.  I just plain can't pay rapt attention for that long.  But three weeks?  Can I do that?

I have to do that. 

I will do that. 

It's a long way down from here.

July 29, 2009

PatientBloggers at BlogHer09.

The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone.  Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.

Fast-forward to July 2009, when the PatientBlogging panel debuts at BlogHer, with Jenni Prokopy, Loolwa Kazoom, Casey Mullins, and me on deck as panelists, with Mr. Lady as our moderator.

I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues.  But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.

(It helped that my fellow medbloggers Rachel, Lee Ann, and Kim were right there in the front row.  Familiar faces ease nerves!) 

The PatientBlogger panel at BlogHer.  More on this photo later.  Sorry I'm not smiling.  :)
The PatientBlogging Panel at BlogHer '09.  For some reason, I'm not smiling.  But I was v. happy.

Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases.  Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me.  I'm also married, but that doesn't mean I'm only someone's wife.  There are many, many parts to the whole.  Diabetes is just a part of me."

We talked about what it was like to connect with people who "get it."  About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.  

"Big, fat disclaimer, guys."  I kept repeating myself, when asked how we deal with people thinking we're offering medical advice.  "It's not medical advice.  We aren't perfect. Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”

Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved.  As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.   

It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions.  But it was intimate.  Comfortable.  We, as a group, were protected within that room.  People spoke their minds, and let themselves cry, without fear.

So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room.  "I look like I have cancer, but I don't."  Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.

"No one has seen me without this, except my husband and my children."  She was crying, along with almost everyone else in the room who was watching her in awe.  "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want.  It will do wonderous things for you."   

Sometimes it's hard for us to blog about our diseases.  It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness.  Sometimes readers lash out and attack us for our opinions or our care regimen.  Sometimes we are forced to have thicker skin than we'd like.

But sometimes blogging about our conditions is what gets us through the day.  Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today."  Sometimes it's the comments from people who really understand what it's like to live with these diseases.  And sometimes it's simply knowing we aren't alone.  And that we never have been alone.

And now, with the support and love of our communities, we never will be alone again.

Patient blogging ... that's some powerful stuff.  This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.

July 28, 2009

Charlie and the Twitter Factory.

I have a lot to catch up on, including a post about Lee Ann and I braving the Indiana highways and then the BlogHer conference, but let me just say this first:  I like Charlie Kimball.  I like him as a person, as a fellow diabetes advocate, and as a race car driver because, really, that is just damn cool.  So there's my big disclaimer:  I like Charlie.  (I even have a post ready to write about meeting up with him at Friends for Life a few weeks ago.)

So I do not like to see Charlie, the guy, under such attack for the @racewithinsulin Twitter account.  Plenty of bloggers are up in arms about the Novo/Kimball union and its steps into social media, like John Mack from the Pharma Marketing Blog.  I felt a little protective of my fellow PWD, which prompted me to do a little investigating.  I wanted to know how Novo, the company, feels about this whole Twitter/marketing/Pharma thing.

So I asked them.

Charlie Kimball and Kerri Sparling.  Dressed almost identically.  Weird.

Ambre Morley, Associate Director of Product Communications at Novo Nordisk and I met at the Friends for Life conference, and I told her that I was concerned about the backlash towards Charlie and the branded Twitter account.  "I have a ton of questions, and I know some of the PR people who are questioning the account might do well to hear the answers.  Like why the account doesn't follow anyone.  And what's the deal with those blatantly branded Tweets?"

She agreed to answer my questions.  And since Novo is the first I can think of to jump in with a pharma-branded Twitter account with a "real face," I wanted to hear the answers.  (Note:  All links to pages within the answers were added by me.)

Kerri:   Charlie is a valued member of the diabetes community, so I can understand why you guys chose to partner with him. But what made you decide to start a Twitter acct?  

Novo:  When we decided to partner with Charlie, we explored a number of different opportunities. He was already "tweeting" personally, however, when he asked about tweeting about our partnership, which includes the insulin he takes everyday, Levemir and NovoLog, we knew had to figure out a way to do it right. We didn't think it was right to ask him to put the prescribing information on his page and monitor every time he tweeted about diabetes. So we created a new account that we could ensure met all regulatory guidelines. Why Twitter? He was already doing it, so we wanted to create something that would easily fit into Charlie's lifestyle.
 
Kerri:  Why are Charlie's personal Tweets and his Levemir Tweets exactly the same?  
 
Novo:  It's important to understand that Charlie does all of the tweeting, both on his personal page and on the Novo Nordisk Race with Insulin page. It's up to him. They aren't always exactly the same, but where convenient and appropriate, he uses the same tweets, as it's probably easier to copy and paste. There are times when the tweets are different.
 
Kerri:  Does Charlie write the Levemir Tweets or is there an editorial vetting proces? Can you explain the thoughts behind the "branded" Tweets?  
 
Novo:  Charlie writes all of the tweets, including the Levemir and NovoLog branded tweets.  We provided him with instruction for how to tweet about the brands and comply with pharmaceutical regulations. So, anytime he tweets the words Levemir or NovoLog, a link to the product prescribing information has to be included.
 
The reason? Take a look at the page from your computer. You see the patient safety information on the left, along with a link to novonordiskcare.com on the right, which contains all of the prescribing and other important information. The challenge is, because the majority of Twitter users read and update their accounts from mobile devices, we knew most people would not see that information if Charlie wrote a tweet. That's why the prescribing information is there. It's required. It's similar to when a company does any stand-alone promotion of a product, that information has to be there.
 
More importantly, it's important to understand that the branded tweets aren't random. Charlie takes Levemir and NovoLog, so when he decides to tweet that he just took his insulin, he really just did. We don't believe a pharmaceutical company has tried to do branded tweets before, much less with a spokesperson who takes the insulin. But we're still learning and trying to figure it out. It's been a fun and definitely interesting time.  
 
Kerri:  Why doesn't the @racewithinsulin Twitter acct follow or reply to anyone? What kind of regulations must be in place for a Twitter acct of this kind?  
 
Novo:  While Charlie is the face of Race with Insulin, it is a corporate account for Novo Nordisk.  At this time, we aren't able to follow anyone, as pharmaceutical usage of social media is very regulated and we want to ensure we do it right. This is just the first phase and as we grow and learn, hopefully we will be able to follow people in the future. We are also open to suggestion.

After speaking to you, we took your advice and set up an e-mail address for the page. (Editor's Note:  I suggested that the account would seem a bit more accessible if they, at the very least, had some contact information.)  You should see an image update in the next week with the new address. But as I know you know, social media moves in real time and we haven't quite caught up to that speed in pharma. We're making baby steps but we're trying to stay in the race.
 
Kerri:  We know you guys are breaking new ground with this Twitter account, so what should we expect as part of your growing pains?  
 
Novo:  We're still learning. We want to do a lot, but we also understand that the pharmaceutical industry is the most heavily regulated in this country. We won't be able to do things as easily as say computer or food companies, but you have our commitment that we do plan to try to engage. Stay tuned.  
 
Kerri:  How has Novo felt about the blog backlash to @racewithinsulin, and how has Novo moved to protect themselves and Charlie?  
 
Novo:  If no one talks about what you do, you probably haven't made much of an impact. That said, it would be nice if the talk was all positive and more importantly, true. We encourage people to ask questions and give us an opportunity answer. We're pretty transparent about our challenges and open to discussion about any ideas to make it better. There were some false assumptions gaining traction, but that's also the nature of this business. You can never please everyone, but you can only hope that social media will adopt some of the principals [sic] of traditional journalism and report the facts, before making assumptions. We're working to move quicker to respond but also encouraging anyone to just ask. As for Charlie, he has been great. He's in a profession where he already has a lot of attention on him and is working with us to help make the page a success.

Kerri:  What do you want the Twitter community to understand about the aims of @racewithinsulin?
 
Novo:  We are very happy to be working with Charlie and wanted to reach as many people as possible. Twitter was an application that Charlie was already using and we wanted to find a way where he could continue to do so and incorporate our relationship.

It's still new and we're just getting started, but we hope to continue to find new, innovative ways to continue to reach everyone with his powerful message that diabetes does NOT slow him down!

*   *   *

I'm glad Novo went out on a limb and dove into the social media space, and I'm also glad that they agreed to answer my questions.  Thanks, Ambre!  What are your thoughts about Pharma in the social networking space?  Don't just say "Hey, they're doing it wrong!"  If you think it's so wrong, what would make it right? 

July 27, 2009

Wait, You Wanted Pictures??

Wait, what's that?  You want to see pictures?  Oh hell yes I have pictures.

This event offered more than interaction with a seemingly open-minded Pharma company.  This event gave me the opportunity to meet and reunite with some of my favorite bloggers in the diabetes space.

Here's the standard shot that the crew at Roche took of all of us.  We look downright jolly.

Jolly bloggers

The night before our meetings with Roche, we went down to the hotel bar and hung out for a few hours (before getting kicked out, sort of, and ending up in Christel's room until the wee hours of the morning and being harassed by "Tim," who has been explained in several wrap-up posts from other bloggers).  

Here are three very special members of my diabetes family, even though this was my first time meeting Scott in person:

We are family.
 
But, of course, every family photo session has it's awkward moments where the big guy tries to toss the tiny blond in the air.  The Ninja and the me could only laugh and end up captured in awkward, eyes-closed grinniness:

Christi gets tossed.

There are plenty of wonderful people I finally connected with, but without formal photographic evidence.  Like Will from Life After DX, who I've been reading for years and am always inspired by.  And Bernard (spelled Bernard) from The Diabetes Technology Blog, who I should have met years ago but until this past week, had never had a chance to hug in person.  I had the honor of meeting Crystal (aka CalPumper), Christopher Thomas, Chris Bishop, Ginger Viera, and Brandy Barnes for the first time, too.  And there were also the several bloggers who I have had the pleasure of meeting before, like Fran, Amy, Manny, Christel, Scott Strumllo, LeeAnn, SuperG, Scott King, Kelly, Jeff, Gina, Riva, Kelly Close, Allison, and Bennet.

Also, my old friend Sandra Miller was in attendence, representing with Bennet Dunlap (again, I know!) and Jeff Hitchcock as the parents of children with diabetes.  David from Diabetes Daily was also there, on behalf of his wife Elizabeth (who is type 1).  Charlie Cherry and David Mendosa represented for the type 2 crew, and Kitty Castelinni stood as one of the few recipients of a pancreas transplant.

So we all met up. 

And goofed off.

A potluck of bloggers ... and this isn't even everyone.

Including Bennet showing off his fabulous pink camera (ooooh!), a late-night packy run, Kelly sharing stories from her diabetes past that made me want to give her a huge hug, a Blair Witch moment and, of course, Christel throwing down to "Tim," a random caller who was intent upon snuggling with Mr. Diabetic Rockstar.  Needless to say, all 4'11" of Christi kept Tim from making any fast moves, and to say that Christopher owes her big time is a gross understatement.  ;)

(Sidenote:  David, I still think it was you who called from the bathroom, but the world may never know the real truth.)

It was a true potluck of diabetes bloggers, representing from all sorts of different demographics.  Unfortunately, there were several bloggers who were missing from this group, and I'm hoping - no, damnit, I'm demanding - that there is an invitation sent to more members of our influential blogging family for any future meet-ups.

These people are my friends.  They're the people who understand what living with diabetes is really like, and they are the external support network I have been hoping for since my diabetes diagnosis in 1986.  So thank you to Roche for giving me the opportunity to say hello to, and hug warmly, the people in this community that I cannot wait to see again.

More of my photos are in Flickr, and there's also a D-Blogger Summit photo pool where you can grab the best of the shots!   

Roche Diabetes Summit: SUM Edition.

You have already read some great wrap-ups of the Roche Diabetes Blogger Summit from some of my fellow bloggers - Amy, Manny, David, Gina, Christopher, Bennet (Note: Mr. YDMV's updates are fictional.  Well, mostly.), and Sandra.  I just wanted to chime in with my thoughts and add my photos to the collection.  :)

We met up in Indianapolis on Wednesday afternoon, after I had flown from LaGuardia to Detroit and then to Indianapolis.  (Yes, I took two flights so that I could avoid taking the itsy bitsy plane that Roche originally had scheduled me on.  The travel people at Roche were very patient and understanding regarding my travel issues, and I really appreciate their compassion.)

But apparently my fear of flying wasn't kept within the travel coordinator circle, as several people from Roche mentioned at the dinner that "Some of us even traveled despite our fear of flying," and heads slowly turned towards me, to which my only xanax-laced response was "I walked."  

Good thing I don't mind being laughed at.  Or with.  More on that later.  

I'm no fool - part of what Roche wanted was to be talked about in the blogs.  Hence why they asked many of the diabetes bloggers to visit their headquarters and brainstorm about social networking and Pharma involvement.  But Roche did this right - they paid for our travel, they paid for our hotel, they made us feel as though we were valued guests, and they listened when we offered our opinions.  We didn't travel on our own dime and feel taken advantage of, but instead appreciated.  That's a good start, in my book. 

It was really a groundbreaking sort of event, with Roche having the balls (go ahead and quote me on that, Rodger the Social Media Warlord) to invite a pack of opinionated bloggers into their house to talk frankly about social media and Pharma - specifically, THEIR Pharma.  We talked about ways that Pharma can appropriately enter the social media space without being received by a mob with torches and pitchforks.

In my opinion, Pharma needs to simply embrace the fact that transparency, honesty, and being open to feedback can make a huge difference in how they are perceived by their patient base.  For Roche to sign on to a social networking site by creating a fake profile or pretending to actually live with diabetes, well that's just plain stupid because we'll sniff them out in a second and destroy them.  However, if Roche, or any other Pharma crew, is willing to put a face to their company and leap into social media by saying, "We aren't living with diabetes, but we want to help improve the lives of people living with diabetes - that's why we are here and that's why we want to be engaged" ... that kind of disclosure and transparency will go a very long way.

I gave the example of Albert Chen, a member of the Agamatrix team who, with grace, honesty, and class, joined the diabetes blogosphere with his blog "What Is Diabetes?"  He said, right in his bio, that he didn't have diabetes, but wanted to better understand the community he was working to serve.  That, Pharma companies who are reading this, is the way to work with the diabetes online community.  Get to know us.  See that we are more than just the sum of our co-pays.  Remind us that Pharma has a face, and more importantly, that you remember we are people, too.  

The Roche team didn't always directly answer the questions, but I can understand that "Why aren't strips cheaper" isn't a question that they can answer without sounding like a business.  However, they need to understand, and always remember, that their business is our life.  So while that chasm remains wide, I think this was an important step in beginning to bridge that gap.

The gap - we're making efforts to bridge it.

July 16, 2009

CWD: Inspired by Jay Hewitt - Again!

Jay Hewitt and me, Kerri.  :)

Jay Hewitt is one of those diabetes role models that makes sense to me.  He's smart, tuned in, and realistic about his health, and he doesn't pretend to be perfect.  (You guys know how I feel about the notion of diabetes perfection - doesn't exist.)  Jay and I spent some time chatting on Friday afternoon and we talked about the concept of survival with diabetes.

"I try and live my life as a non-diabetic.  I'm not going to live in denial [about diabetes].  I live in determination."  Jay told me about being diagnosed at the age of 24 while in law school (he's lived with type 1 diabetes for 18 years) and he's convinced that the stress of law school and life at the time is what triggered his diabetes diagnosis.

"Me, too!  I had a virus on my birthday that my doctors are convinced triggered my diabetes."  I said.  I told him that many of us with type 1 can remember some kind of catalyst event before the "you have diabetes" moment.  (Stress seems to play a significant role in our collective medical histories.)

We talked about the impact of being public about our diabetes management has on our drive to be healthy.  I admitted a few of my own fears to Jay.

"I'm healthy now, with no visible diabetes complications, but I worry about what will happen, and how people will perceive me, if things change in the future.  How does that motivate you?"

"It makes me work even harder.  I take that 'I'll show you' mentality when it comes to diabetes management.  Knowing that people are watching helps me to push," he offered candidly.  "It's not about guilt [when it comes to complications], but revenge." 

We talked about the impact of being diagnosed as a child and as an adult, how most of the parents at CWD were caring for their child's diabetes directly while his own parents had more of a distance between themselves and the disease.  Since Jay is a motivational speaker and speaks to groups both dealing to diabetes and otherwise, I asked him what message he wants to impress upon his audiences. 

"What is the takeaway you want for parents?" 

"I want parents to have the confidence that that their child can be anything they want to be, and the comfort that they can sleep at night."

And for the kids?

"I want them to see anything they want to be and think, 'I can be that.'"

As I sat across from Jay, straddling that line between being a "kid" and that desire to be a parent myself, I saw a guy who lives an incredible life, despite and even with diabetes.  He's healthy, determined to succeed, happily married, and the proud parent of a little girl.

And I thought to myself, "I can be that."

(Unnecessary sidenote:  Last year, I wrote about Jay Hewitt's speech at CWD, and in my blog post, I mentioned that he was handsome. 

Of course, someone that knew Jay found my post and forwarded it to him. 

And, of course, he read it.

And, of course again, I was mortified and went to edit the article but the damage was already done, so I was forced to leave it as is and suffer the embarrassment.

So this year, when he came to find me and he said, "Hi!  Nice to see you again.  I loved your post from last year," I turned all kinds of colors and tried to pretend I had grown up a smidge since then.)

July 13, 2009

A Test-In!

(I had one more quick post to write.  THEN I'm going back on vacation!) 

We're too active for a sit-in, and we aren't exactly the types (literally) who can do a hunger strike.  But a test-in?  That's something we, as people with diabetes, can and should get behind!

In just a day or two, TuDiabetes and EsTuDiabetes will reach the combined member total of 14,000.  Manny Hernandez and team over at these sites have organized a "test-in," where everyone with diabetes can test together at 4 pm EST on July 14th. 

If you're part of the diabetes community and you want to participate in this awareness event, here's what you can do:

  1. Test your blood sugar at 4 pm EST on July 14th.
  2. Post your reading in the thread at TuDiabetes, share your reading on Twitter using the #14KPWD hashtag, or update your Facebook status with your result and link back here
  3. Grin, knowing that the simple act of testing your blood sugar both benefits your health and increases awareness for this disease that we all live with every day.
Everyone test at 4 pm EST on July 14, 2009!

“We hope to see most readings posted at 4 pm ET on July 14. If you are a few minutes late, however, or are able to post your blood sugar reading earlier or later that day, it’s OK,” said Manny. “What really matters is that you test your blood sugar regularly. If you don’t have diabetes, just tell someone who does to test and share on July 14.”

This is so cool.  I wonder if I listen very closely if I'll hear all the lancets shunking at once.  :)

July 02, 2009

One Lump or Two?

Like I wrote a few weeks ago, "Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile." 

But on the flip side of that, there are some diabetes-related things that make me grimace.  (Not Grimace, but grimace.)  And when I'm feeling down about the hard parts of managing this disease, I often turn to humor to lift me back up.  (For me, a little gallows humor goes a long way in keeping me from really falling into a depressive state.  It seems like a counterproductive idea, but it really helps me.)

This is where Haidee Soule Merritt's book comes in:  One Lump or Two?  Her book more than resonated for a 20+ year diabetes veteran like myself.  It's taken me a long time to build up this much amusement at a disease that's trying its hardest to take me out, but now I'm in the thick of the smirking-despite-the-chaos.  

As I read through her book, I laughed.  I laughed and nodded my head in agreement, thinking, "Oh hell yes, I hate those geyser fingerpricks."

How many times has this happened to you??
Who hasn't this happened to?  (Image credit:  Haidee Soule Merritt)
 
I snicked despite trying to be classy when I saw the one about low blood sugars after sex.  (Trust me, not fun.  And also, awkward as hell.)  

Low blood sugar after sex.  Oy.
Been there.  Done that. (Image credit:  Haidee Soule Merritt)

Diabetes isn't easy.  Neither is laughing at it.  But laughter, finding something that alleviates some of the anxiety and fear that comes with a chronic illness, can make such a huge difference in health.

If you want to order your own copy of Haidee's book, visit her website (and enjoy the duck sounds on the buttons, because they quacked me up).  As you thumb through your copy of One Lump or Two?, you'll find yourself smirking with understanding, too.    

June 30, 2009

GlucoStories: Everyone's Got One.

I'm a supporter getting the stories of people with diabetes out there for public consumption. Awareness and advocacy are the name of the game, for me.  We aren't perfect, we don't have all the answers, but we do know what it's like to live, every day, with diabetes.  

And now you can share your story and win a prize!  Here are the details, according to the info I received:

If you have diabetes, support someone with diabetes, or help the diabetes community, then tell us. Your story could win you a trip to Charlie Kimball’s Firestone Indy Lights Championship race in Florida October 8-10, 2009! (Or other great prizes!)

Entries deadline: Monday, July 6, 2009 Midnight (EST).  Enter at www.GlucoStories.com.

I'm pro-Charlie, as you know.  I think he's a great guy and I like his mission to help people with diabetes (and I'd also like to drive his car).  So when the folks at American Diabetes Wholesale (they're putting this contest on) asked me to help spread the word, I was more than happy to help - and I'll be serving as one of the contest judges, as well.  Also, according to the email I received from my buddy at ADW, "any funds that are received from this event will be donated entirely to JDRF."  I can't argue with that. 

So if you have a story to tell, you still have a few more days to enter to win! 

/public service announcement  :)

June 26, 2009

The Faces of the Philly Meet Up.

The conference I'm speaking at this week is about social media and how pharma and patient bloggers can work together to benefit the patient community.

My main points are to drive home the fact that even though we might be perceived as "target markets" and "diabetes consumers," we are people first.  We're people before we're patients, before we're anyone's consumer base, before we're diabetics.

People.

And last night, I had the distinct pleasure of hanging out in Philadelphia's Black Sheep Pub with a bunch of people who just happen to have diabetes.   Sitting among all these shining faces (because, holy crap was it hot in there), I wished that Big Pharma was there with us to see the real people behind the diseases about which they create power point presentations.

The D-Bloggers Descend on Philly
 Hey Pharma!  See us!  We're your "target market!"

It was great meeting everyone last night!  Thanks for coming out in that heat, and I'm looking forward to seeing you guys again!!

June 24, 2009

Why I Wanted a CGM.

On my soapbox again.  Hello!I'm often asked about why I chose the Dexcom CGM over the Minimed, and I have plenty of posts here on SUM that talk about my experiences with the two devices:

And then fighting for insurance:

And after I had won insurance approval, Dexcom and I joined forces:

Phew!  But part of even starting this process was wanting to go on a CGM to begin with.  I'm often asked about the different continuos glucose devices and pros and cons of each, I get just as many questions as simple as this:  "What made you ready to go on a CGM in the first place?" 

I know that for going from injections to pump therapy, I was frustrated with the lows that were happening three times a week, and how my ex-boyfriend was constantly finding me motionless in the bed at 4 am, covered with sweat.  After 17 years of injections and after two years of an A1C that wouldn't budge, I made the decision to use an insulin pump.

After deciding to wear one medical device, it was easier to try another one.  A few years of pumping made me feel comfortable with the 24/7 attachment of a diabetes device, so when the continuous glucose monitors became more prevalent on the scene, my interest was piqued.  At the time, I was in a serious relationship, thinking about having children in the future, and realizing how my blood sugars still weren't running better, despite my increased education and effort.  It was time to try something a bit different.

With a CGM of any kind, there's a certain security that comes with it.  I feel more confident speaking at events when I can look at the graph on my CGM and see that I'm holding steady.  Same for getting in the car for long drives, or on a plane for a few hours.  After twenty plus years of only having snapshots of what my numbers were like, I now have access to the streaming video, so to speak, of continuous monitoring.

Yes, there's also the "Hey, you're a robot" component to this.  I can't lie.  When I look at my body and I see all these things stuck to me, in addition to the red dots of diabetes devices past, I feel a little overwhelmed.  But it's part of living with this disease. (Most of the time, I'm able to shake off the robot feeling and just let Chris call me Rosie.  Whoops - there's the digression.)  I actually feel okay with wearing two medical devices.  It's sometimes cumbersome and inconvenient, but for me, the pros outweight any cons.  I hear a lot of bad news about diabetes, about how this many years with type 1 can really cause a landslide of issues, about how life can be compromised.  And I don't want that. 

Regardless of what happens in my future, I want to make every effort to be as healthy as I can, both mentally and physically.  And I'm ready to keep trying.  That's why I blog.  That's why I raise awareness.  That's why I pump. 

And that's why I wanted a CGM.

June 19, 2009

Some Diabetes Advocacy Goodies.

Some bits and pieces that I wanted to get out as soon as possible, seeing as how I've been under the weather for a few days and falling wicked behind on just about everything.  Here are some diabetes advocacy bits I've been meaning to share!

SUM flower images.The NYC support group I visited a few weeks ago has outgrown its Tuesday meetings and is now spilling over into a third meeting, at the end of each month at The Cure Thrift Shop.  If you are in the NYC area and you have next Thursday free, here are the details:

First meeting: Thursday, June 25th, 7:30PM-9PM
Meets every last Thursday of the month
Meeting location:  Cure Thrift Shop
111 East 12th Street (btwn 3rd and 4th aves),
New York, NY 10003
No cost or commitment.  All adults with T 1 diabetes welcome, newly diagnosed or old D veterans.  Get in touch to let them know you're interested/RSVP to: support@act1diabetes.org

I will not be able to make the first meeting (will be in Philadelphia for a conference) but if you are able to meet this fantastic group of women, I HIGHLY suggest you do just that.

SUM flower images.Next on tap is some news I received from the JDRF about their fabulous Children's Congress. According to the press release,  "Some 150 children and teenagers throughout the U.S., and several from around the world have been selected to travel to Washington, D.C. this summer to represent their state and country and remind Congress and the Administration of the critical need to find a cure for a disease they live with every day— type 1 (or juvenile) diabetes.

These children—ages 4 to 17, representing all 50 states and the District of Columbia, and all diagnosed with type 1 diabetes—will converge on Washington, D.C., to tell their stories and urge lawmakers to help find a cure during the Juvenile Diabetes Research Foundation’s Children’s Congress 2009, from June 22 to 24." 

Also part of this Congress is Nick Jonas (OMG he is so hot ... if you're 15), who will be testifying to request federal funding for diabetes research.  With Nick will be Mary Tyler Moore and Sugar Ray Leonard, locking it down for diabetes research.  This is a very cool event indeed.

SUM flower images.And lastly, as I mentioned before, I'll be in Philadelphia on June 24th - 26th for a conference, then hanging out with some members of the diabetes community.  If you are local to the Philly area and would like to join us for a diabetes meet-up on Thursday night, please email me at kerri (at) sixuntilme (dot) com (with the subject line "Philly").  Would LOVE to have you join us, if you can! 

That's all I have for the moment.  More stuff coming later, as I sift through emails.  :)

June 18, 2009

Working On Working Out.

Way overdue on a new vlog post, but I was inspired by George's post yesterday about getting back on track with exercise.  So here's my vlog post about diabetes, working out, and what motivates me to move.

Some of my reasons are a little goofy, but I think whatever gets me to exercise is well worth laughing at myself a little bit.  What gets you to break a sweat?

June 16, 2009

Do I Have the Right?

Over the weekend, Chris and I (and his sister and dad) ended up in a harborside restaurant in South County, RI.  We stood in line and read the chalkboard menu until it was our turn to order from the girl behind the counter.

"What can I get for you?"

"Can I have an iced coffee?  Do you have iced hazelnut?"

"I'm sorry - we don't have hazelnut.  But we have snickerdoodle or french vanilla.  Either of those work for you?"

"Snickerdoodle sounds awesome.  Is that a syrup?  Is it sugar-free?"

She gave me just a quick look.  Not judging, just looking.  "It's definitely sugar-free.  Medium or large?"

"Large," I said, and she turned away to make my coffee and I saw the pink Animas pump clipped to the side of her black pants, the tubing sticking up all crazy. 

And instantly, I want to ask her a million questions. 

With the Dexcom and the Animas being integrated sometime "soon" and with my only pumping experience being with Minimed, I wanted to ask her how she liked the Animas.  I wanted to see how long she'd been diabetic and did she go to Joslin, too?  Did she know any other diabetics?  How long had she been pumping? 

I wanted to tell her that the tubing gets all crazy on my pump, too, sometimes. 

But do I have the right to make her diabetes my business?  Just because I write about it doesn't mean I have the right to grill her about her diabetes.  She wasn't asking me why I wanted to make sure the coffee was sugar-free.  She was just going about her business.  Did I have the right to poke into hers?  Just because she wears an "external symptom" of her diabetes in the form of that pink pump, did I have the right to ask her about it?

There have been a few times when a diabetes discussion was thrust on me without my invitation.  "Hey, what's that thing on your hip?" becomes this moment of advocacy that, while effective, wasn't what I wanted to do that day.  Sometimes I just want to order my coffee without being grilled about why I need to make sure the syrup is sugar-free.  Other times I'm blogging about the teeniest minutiae of life with diabetes.  I oscillate between wanting to be a diabetes advocate and someone who lives a quieter diabetes life.  Sometimes I don't want to talk about it at all.  That day, I didn't want to be an advocate.  (Or a pain in the ass.)  I just wanted to get some coffee and enjoy the day.

Maybe she doesn't want to talk about it, either. 

She made my coffee and added some cream.  I handed her my money. 

And I left without saying anything.

Do I have the right?

It's not always what we have to talk about.  There's way more to us than this. 

June 12, 2009

Community, Everywhere!

Earlier this week, dLifeTV did some filming for our upcoming new season.  And as part of a segment we're doing on online diabetes support, I had the chance to see Nicole Johnson again and to meet two members of the dLife community - Mark and Shauntaye.

Tune in to dLifeTV to catch these new shows!

We talked about our common experiences as people with diabetes, and how online communities have positively impacted our health.  I thought about all of us, writing our blogs and really sharing so much of our personal medical experiences, and how much this whole journey has helped improve my life with type 1 diabetes.  Our little community here has gotten so big.

I spent the better part of this week confirming travel arrangements for the next few months, and even though I'm not a very good (or calm) traveler, just knowing I'll have the chance to connect with more people who "get it" makes all the flight anxiety worth it.  I'm looking forward to visiting Philadelphia for a conference at the end of the month and hanging out with some fellow d-community members.  I cannot wait to go to Orlando in a few weeks and attend CWD's Friends for Life conference.  I'm excited for the Diabetes Summit in Indianapolis in July, and for the BlogHer event the next day in Chicago.  And I am so honored to be speaking at the BlogWorldExpo in Las Vegas in the fall.  Lots of travel for a cause I'm still so passionate about.

But damn ...  I'm going to need a bigger suitcase.  ;)

Since I started blogging four years ago, I've had the opportunity to meet many fellow diabetics, either through SUM or TuDiabetes or the JDRF or dLife.  We're a supportive and inspiring crew, and I'm really looking forward to meeting more of us "in person."

June 11, 2009

An Open Letter to Brett Michaels.

Idiot.Dear Brett Michaels,

Really?  Really?  I'm going to hope that you were misquoted.  I'm going to hope that maybe the reporter took your comments out of context and made you sound like an idiot, instead of you actually saying the following:

"Brett Michaels:  The only time it [diabetes] will ever affect you in bed is if you have extremely low blood sugar and you go into insulin shock, at which point you won't be standing up, let alone performing sex. However, I will sometimes hold off on the insulin, which will jack my blood sugar level up to the low 200 range. It's like how a prizefighter will want to go into the ring with his blood sugar levels high. It gives you the stamina of a bull. So, yes, sometimes I will endanger my own life to pleasure a woman."

(source:  Huffington Post

You dumb shit.  Brett, going low during sex is a pain.  I know.  I've had to stop for snacks, and I've had to stop entirely.  I've had discomfort and the inability to perform due to high blood sugars, too.  I've had sex while connected to my insulin pump, and I've also had to find ways to feel comfortable with sharing my diabetes with sexual partners.

But you, saying that you purposely run high "like how a prizefighter will go into the ring?"  Gives you "the stamina of a bull," you say?  You don't sound cool - you sound like a toolshed.  I was under the impression that high blood sugars are among the main reasons for sexual complications for diabetic men.  Are you hearing me, Mr. Michaels?  If you run purposely high, your manhood runs the risk of malfunction.  And stamina of a bull?  Pffft.

High blood sugars aren't steroids.  They're toxic and cause lethargy.  They are dangerous for a diabetic.  They make your breath smell like airplane glue, and telling a reporter that running high makes you shag like a rock star is a bit of a misleading statement.  (Are sure you're rocking these women as passionately as you claim?)

Dude, you are in the public eye.  You are among the very few celebrities who are living with type 1 diabetes.  I'm not saying you have to be Johnny Advocate, but don't spread misinformation.  Don't encourage some young guy to skip his injection in pursuit of being good in bed.  You know as well as I do that good diabetes control is what leads to strength and stamina.

You know better.

Or maybe you don't.

Best,
Kerri.

June 04, 2009

Stereotypes: We Haz Them.

I'm sorry, can you speak directly into this and let me know what ignorance you're spewing?A member of the Diabetes UK outreach group sent me their video about "setting the record straight," featuring a young girl with type 1 diabetes who is being bullied by her peers.  They taunt her, telling her she brought this on herself and that she is contagious.  She turns to the camera and asserts the facts about type 1.

And I agree with this.  My diabetes isn't contagious.  It isn't because I ate too many candy bars as a kid or because I had a weight problem or because a black cat carrying red balloons crossed my path on a Tuesday evening. But how often do I turn to the camera ... I mean, person, and set them straight with a well-articulated and poised onslaught of accurate information?

I am not a doctor and I can't spin you a tale of the precise physiological aspects of how diabetes works, but I do know that there's a pile of stererotypes. Though blogging, my job at dLife, and just simply sitting on the subway, I come across plenty examples:

  • "Diabetes is from eating too much sugar."
  • If you wear a pump, it means you diabetes is "really bad."
  • "You can't eat sugar."
  • "You can't eat carbs."  
  • (You can't eat anything, it seems.)
  • "Diabetics shouldn't have kids."
  • "Aren't you supposed to exercise when you're low?"
  • "Diabetes is contagious and you can get it through sharing needles."
  • "People with diabetes are unclean."
  • "Diabetics are the reason for increased healthcare costs."
  • Kids with type 1 diabetes can eventually outgrow their disease.
  • "Diabetes is cured by taking insulin shots."
  • "People with type 2 diabetes gave it to themselves."
  • "All diabetics are overweight."
  • "Diabetes isn't a big deal."
  • "Did you used to be fat?"
  • "No one wants to date or marry a person with diabetes."
  • Diabetes can be cured by taking this pill, this chocolate shake (!), this raw food diet, this crap supplement.
  • CGMs and pumps are a closed-loop system and by wearing one, I don't even have to manage my diabetes anymore.
  • "You're grown up now, so your mother doesn't have to worry about your diabetes anymore."

And the list goes on and on and on ... for miles.  I can't even list all the ones I've heard over the last 20+ years because they vary in shapes, sizes, and levels of ignorance.

Chris and I talk about this sometimes, about how much the "average" person doesn't know about diabetes.  About how I get offended at times when people talk about diabetes like it's something not worth worrying about or how people who end up with complications are at fault for their body's failure.

"Not everyone understands, Kerri."

"I know, but I really wish they did.  And I know that's unreasonable because plenty of people have much better things to do than care about a disease.  But I cannot stand when diabetes is made out to be something that I 'asked for' or something I manage so easily with the push of a button on this pump, right?  Do we look to healthy?  Do we not look healthy enough?  I think this is a serious disease and the stereotypes make me nuts sometimes."

After a beat:

"Good thing I'm not bitter, right?" 

We laugh, but the song remains the same.  People don't have a clue sometimes.  Sara is writing about itGeorge is Tweeting about it.  And I've touched up it here at SUM, too.

I want to know what kind of stereotypes you guys hear about.  Do you bother to correct people?  Do you write letters to let companies know that their marketing campaigns are painful to watch?  Do you make efforts to ignore the misinformation or do you work to correct it when and where you can?  Or are you practicing your apathetic "pfffft!" and moving on without giving it much thought? 

May 29, 2009

Old School Diabetes: Meters.

A few weeks ago, when I was poking through some old photos, I found my first teaching manual from Joslin.  (The big, red book.)  And tucked inside of that book were some old advertisements for glucose meters.

Like this brick from Accu-Chek:

Old meter from the dark ages of diabetes.

This thing was huge, took two minutes to produce a result, and it was heavy enough to double as a hurricaine doorstop.  It's remarkable how much this technology has changed in the last twenty-two years.  Here's another oldie:

Another oldie.

I love the instructions - they're a freaking mile long!  Blood glucose monitoring has come a very long way since my own diagnosis - from urine testing to blood testing to the Dexcom that reads me every five minutes - but I'm not as impressed as I'd like to be.  I heard a few months back that the accuracy requirements for today's meters are the same as they were back in the late 1970's.  (Is that true?!)  Color options are great and shorter instruction manuals are also nifty, but I'd like this thing to give me results that are SPOT freaking ON. 

Like this morning.

I tested and got 77 mg/dl on my meter.

The Dexcom said I was 39 mg/dl.

I tested again and saw 101 mg/dl.

How can I respond to a number that doesn't sit still for even a second?  How is a diabetic supposed to aim for that moving target?

Most days, diabetes doesn't get into my head and scratch around.  Most of the time, I feel emotionally and mentally equipped to handle the disease management and "life" management.  It's never fun, and never simple, but it's something I feel at peace with.  But this morning, I couldn't even get a sense of what blood sugar number to react to.  And when I peeled off the Dexcom sensor to replace it, a ripe, red dot of infection had brewed up underneath.  My blood sugar, when I arrived at work, was 123 mg/dl but after I ate my snack, it crested up to 234 mg/dl for some ungodly reason.  I don't know which end is up.  And technology isn't doing anything to make type 1 diabetes any easier.

Today, I'm spent.   

May 28, 2009

SuperG Takes the World By Song.

George Simmons rocks!Diabetes brings us together, that's for certain.  Since I started blogging, I've had a chance to meet so many other people with diabetes, and I've had the distinct pleasure of forging friendships with these kindred spirits.

George Simmons is a guy I'm proud to call a friend.  

And he's written a beautiful song called "Not By Choice," which he has recorded professionally and loaded to iTunes (where you can purchase it)!  George and I shared a cup of virtual coffee and he humored me by letting me interview him:

Kerri:  SuperG, I'm honored to count you as a friend, but there are some people out there who don't know who you are. (I know, dude. I, too, am shocked.) Can you tell them who you are?

George:  My name is George Simmons. I am a 36 year old, father of 2, husband of 1, and a type 1 diabetic for 18 years. I love to play music, sing, write, play video games, and make people laugh as often as I can.

Kerri:  You've written a song in tribute to your own diabetes - that is so awesome. What is the inspiration for the song?

 
George:  I wrote "Not By Choice" last November for World Diabetes Day. I knew I wanted to do something special for that day on my blog and literally started the singing the chorus on my way home from work one day. By the time I got home, I worked out the chords, wrote the lyrics for the verses and recorded a video of myself playing it. The inspiration was really just wanting to express some of the journey of this disease and in turn hopefully help others to see that they are not alone.

Kerri:  What made you want to record it and put it out there for the world?


George:  After the vlog post went up I had a lot of people asking for it. I was so flattered but was not sure I could pull it off. The more I read the lyrics and heard the song it was like something was telling me that I had to do it. I had to tell this story because the more I heard from people, the more I realized that it was not just my story. And I saw that it was not only a song for people with diabetes but really anyone living with a chronic condition can find their own story in these words.

Kerri:  You've been diabetic for a long time, but you've made incredible strides in your own health over the last few years. How has the diabetes community helped you take better care of yourself?

George:  I often tell of how the online community saved my life. I mean that with deepest sincerity. Before I found this community I was a pack a day smoke who never checked his blood sugar, and who had an A1C of 12.5! After finding all these people online and starting my own blog, I have lowered my A1C significantly, quit smoking, started insulin pump therapy, check my BG 8-10 times a day, and just recently won a battle with insurance for CGMS!

All this I did with the help, support, and guidance of this community. I love it so much.

Kerri:  And it loves you, too, George.  Seriously.  So what can we, as your d-crew, do to help you?

George:  Spread the word! If you know someone who lives with diabetes maybe they will find some comfort in these words. Here is a direct link to where you can get the song using iTunes.

Kerri:  What's your goal/dream for this song? What kind of a difference do you want to make?

George:  My dream would be for this song to help raise awareness about a disease that does not get, in my opinion, the attention it needs. But my goal is to just help touch someone's life and make them feel less afraid, less different, and not alone.

Kerri:  And is your offer to take Siah serious? Because I have a box with airholes, postmarked for California, right here beside me ... :)

George:  I would in a heartbeat if only my wife was not allergic to cats. Although, now that Siah has started blogging, I would be a little afraid to leave her alone in the house. Click to download "Not By Choice" today!

Kerri:  Good point.  Thanks, George.  You are something else, my friend. 

This song is gorgeous.  Chris and I listened to it last night and applauded like mad at the end.  I recommend that everyone who has diabetes, or cares for someone with diabetes, downloads this song and adds it to their playlist to provide some much-needed inspiration. 

So what are you waiting for?  Go!  Download!  Listen!  And for another FOG (Friend Of George) post, check out Scott's post at Diabetes Daily.

May 26, 2009

Sotomayor and Diabetes Get All Media'd Out.

I can't pretend to have all the information on Judge Sotomayor and her Supreme Court appointment.  But I do know that my first day back here at work has been one email after the other about Sonia Sotomayor and the effects of her type 1 diabetes on her potential new gig. 

Total media deluge.  Here are some of the highlights:

  • Time Magazine provided an article that made me wonder if I'll make it to 40 years old, never mind to tomorrow, complete with heroin-esque photo to represent an "insulin injection."  They unfortunately paint diabetes as a disease that will rot you in a month's timeframe and leave nothing but your shoes.  (Hey Time, why don't you visit the Diabetes365 project to get a feel for what real diabetes photos look like?  Sorry for that digression but mainstream media needs to get their hands on some better, more accurate stock photography!)

  • The Wall Street Journal asks the question, "Should Sotomayor's diabetes be considered in the nominiation process?", citing the ADA's press release applauding Obama's selection.  Apparently, Sotomayor's weight is under attack as well as her diabetes status.  Are only the uber-healthy capable of just rulings?  The news, she is going berserk.

  • The Newsweek "Human Condition" blog comes right out and says not to worry about Sotomayor's diabetes, stating, "And while Sotomayor's condition may lead to complications that force her to retire after twenty years of hard work on the court, there's also the chance that if appointed, she could be hit by a bus on her second day and be forced to retire then."  (Morbid, but good point.)

  • The Huffington Post is in on the action, too, calling out a few Twitterers for running their 140 characters:  "Glenn Beck's Twitter - wondered if Obama, the 'messiah,' has healed Sotomayor's diabetes yet. Michelle Malkin proved that Twitter's 140 character cap isn't too strict to include both a vague sexist and racist remark."  And the Wonkette takes sarcasm and snark to a new level with their "Sotomayor has diabetes - good or bad?" column.

  • Yet this article from the New York Times doesn't even mention her diabetes at all.

  • Of course, this topic hasn't escaped us, the diabetes community, either.  Amy wrote about Judge Sotomayor last week, David posted on Diabetes Daily, the dLife Today blog has a piece, and TuDiabetes members are sharing their perspectives, too, like Jenny's post and Ann's discussion.  The JDRF also issued a statement regarding Sotomayor.  And I'm sure there are others who weigh in.

Holy media overload.  The Internet is exploding, it seems. 

I admittedly do not know much about Judge Sotomayor or her background other than what I've read over the last week or two about her potential appointment.  But I do know quite a bit about type 1 diabetes after 22 years with it.  And in my opinion, her diabetes shouldn't play a role in this consideration process - at all.

A "defective pancreas" does not mean a defective mind. 

May 13, 2009

Guest Listener.

I boarded the train in Connecticut and from the time I found Karen (of Bitter-Sweet fame), I was downing Dex4 liquid things, glucose tabs, and Smarties constantly.  The Dexcom kept BEEEEEEP!ing, my meter kept confirming, and I kept infusing the sugar.  I was under 70 mg/dl for the entire train ride, the cab ride, and then the first ten minutes of the support group meeting in NYC.  By the time the group arrived and we were doing introductions, I was punchy from the sugar rush.

"Hi, I'm Kerri Sparling and I've been low since Karen and I got on the train in Connecticut." 

This is how I decide to introduce myself to the support group in NYC?  Great.  Already off to a decidedly awkward start.  (But I'm nothing if not awkward.)

But these women were patient with my ramblings.  And they truly are something else.  Katie Savin, organizer of the NYC support group for young women with type 1 diabetes, has found some of the most compassionate, open, and well-spoken women in the NYC area to share her space with.  I was invited at their guest speaker, but I was humbled to be more of a guest listener.

They share openly.  Someone asked a question about CGMs and three people leapt up to show their sensors.  A woman shared her emotional journey with complications and guilt and the rest of the group immediately offered words of support and validation.  Another woman is getting married nine days from today and went on her pump barely a month ago, and the group offered tips on hiding her pump in her dress.  Another (with the best hair I've EVER seen) is marrying in November but proactively preparing her body for pregnancy, and I felt her frustrations intimately. 

We talked about what it's like to be newly diagnosed, or a diabetes veteran.  Some on pumps, some on shots, some on CGMs, some on the fence - it was a melting pot of personalities and passions, all lives laced with type 1 diabetes.

It.  Was.  So cool. 

(And I finally had a chance to meet LeeAnn from The Butter Compartment and author Elizabeth Joy. I love putting smiles and inflection to the writers I read, and I was very happy to say "Oh my gosh, hi!" in person.  They are two lovely and extremely talented writers, that's for damn sure.)

The hour and a half meeting ended too soon, and we found ourselves tumbled out onto the sidewalk and chatting out there.  Sidewalk chats lead to sidewalk photo shoots.

And photo shoots lead to "Are you going to put that on the blog?"  

Of course I'm going to put this on the blog, damnit!  :)

(Answer:  Yes.) 

And then we blinked and about ten of us were sitting at the Gramercy Diner and still talking our faces off.  I am constantly amazed by the steady and comfortable flow of conversation between diabetics, and how quickly the conversations stray away from diabetes stuff.  We are not short on things to say, it seems.  (Just short on islet cells.  :: rimshot ::)

Much like the Fairfield County dinners, the group is comprised of people who have nothing in common but diabetes.  But at the same time, that gives them everything in common that they need to sit and talk for hours on a Tuesday evening and become friends.

Thanks for having me, Katie - I was very honored to be your guest.  I hope to see you guys again soon!! 

May 01, 2009

The Friday Six: May Day!

I must thankfully admit - blood sugars have settled down a wee bit (thanks to a 150% basal rate increase that I'm not changing until I'm sure the cortisone is out of my system) and my wrist might be feeling a little better, so things are looking much sunnier in my corner of the Internet today.  About damn time. 

It's time for a little Friday Six action:

1.  Last night I had the opportunity to attend the JDRF Spring for a Cure event at the Metropolitan Pavillion in NYC.  I haven't been into the city in a few weeks, so it was kind of fun to ride the train in and get a little "aaaah" over Grand Central again.  I met up with Gina Capone and we spent a few hours checking out all the trappings, from cheesecake to white wine.  We ran into my former coworker Jon and his wife Lindsey, fellow blogger Allison Blass, and some of JDRF's finest.

Kerri and Aida - chilin'.

The JDRF knows how to throw an event, as the place was packed with people all passionate about diabetes research and a cure.  Including Soprano's star Aida Tuturro, who I spent some time talking to.  (She's a hot ticket!)  Aida has type 2 diabetes and was featured on dLifeTV a few seasons ago.   

2.  Also, best-selling author Brenda Novak is a friend of the diabetes community, thanks to her Novak’s 5th Annual Online Auction for Diabetes Research.  According to the press release, "The auction is held each May is a labor of love for her son who has lived with the disease for most of his life. It is also a month-long online event featuring lunches, dinners and one-on-one meetings with celebrity authors, world-class getaway vacations and state-of-the-art gizmos and gadgets."  And this year, my friends at the Diabetes Research Institute are the sole beneficiaries.  Pretty darn cool.  Visit the auction site and start bidding.  It all benefits a cure!

3.  Today is the last day to enter the Diabetes Mine 2009 Design Challenge, so if you're still thinking about entering to win $10,000, you'd better get cracking!   Submissions can be sent in until 11:59 Pacific time, so there's still time to enter. 

4.  The new issue of diaTribe is out with an all-new SUM Musings - complete with cameos from my mother and my brother talking about diabetes awareness for those who aren't diabetic themselves.  If you aren't a subscriber already to diaTribe, sign up.  Seriously.  I know I'm a columnist there and am very biased, but Kelly and Co. do a fantastic job andThe Friday Six:  May 1, 2009 edition I'm a proud supporter of their work.

5.  In a little plug for my office, the production team at dLifeTV is looking for a few good diabetes stories to potentially feature on the show.  Currently, they're seeking college students with diabetes, married couples dealing with diabetes in their relationship, and diabetics struggling with alcoholism.  Check out the call for submissions and see if we're looking for YOU.

6.  And in a little plug for yetis, I think I may have spied one from the train last night.  We were just about to pull into Harlem 125th when I looked down and saw a person sitting on a bench outside.  Wearing a full fur suit.  Like a real fur suit - no joke.  I am not unconvinced it wasn't a yeti.  Which leads me to SkyMall.  Which leads me to this video.  Then this one.  Which leads me into a brain tangent I wasn't prepared for. 

Holy digression.

I'm off to buy a yeti.  Or maybe just take a nap.  :)  Either way, have a good weekend!

April 21, 2009

Precision LogBooking.

"So what is this one, the 236.  Did you correct this?  Is this after eating?  I can't really tell."

And I peered at the logbook, chock full of results.  Months of results, all neatly organized by date and time.  Only without food or insulin doses written in, so it was less like a diabetes assessment tool and more like the machine that spins the bingo balls. 

"Ah, I have no idea.  Damn, I have no clue, actually.  I'll assume I corrected it." 

There's not too much difference between writing in all the results the night before an endo appointment and printing out the numbers.

With last week's endocrinologist appointment being a little less than thrilling, I'm on a new game plan to get ready for my June follow-up.  Dr. Brown has asked me to keep a detailed logbook of my numbers.  Not necessarily a food journal, but more a list of blood sugars, insulin doses, and carb intake.  

"You don't need to list the kind of fruit you ate, but if you just put that it was 20 grams of carbs, that would be what we need.  That way we can tell what's causing what."

The wee ickle logbook.

So I bought a very small moleskine book to record everything. (I love these books. I have one in my purse at all times and I use it to jot down everything from blog post ideas to words I want to remember to look up to reminders that if I don't pay my cell phone bill, they will come for me.)  It's a wee little thing and it fits in my meter case.  Surely it will be covered in blood and have test strips stuck to it by the end of June, but so far it's been one full day and I'm still on the wagon.  (And that, my Faithful Readers, is saying a TON.)

I get burnt out with the details of diabetes.  The whole logging thing throws me off my creative stream of consciousness.  "You mean I have to write this stuff down and analyze trends?"  I'll wear the pump and the Dexcom and do my due diligence, but when it comes to the diabetes nitty-gritty, I often tumble off the wagon.  

It's a lack of patience.  Maybe a lack of desire to make a blood sugar testing moment last more than the five second countdown.  I don't like when I feel so much of my time slipping into the realm of diabetes management.  And I make plenty of excuses not to focus:  "I'm heading to Tucson."  "I'm going home to RI for the weekend."  "I'm having dinner with NBF."  "I'm too busy at work."  "I'm ... no."  

But I'm a woman on a mission.  If I don't ever buckle down and make my A1C my top priority, it may always hover around seven plus percent.  Even if it's a pain in the ass, and even if it's "hard," I owe it to myself and my future family to give it my best.

Poor Chris.  He thought Twitter ate up time?  Wait until he sees how often I have to logbook.  

April 10, 2009

Color Comparision Chart.

As I mentioned yesterday, I stumbled upon some diabetes relics at my dad's house the other day.  Now I'm totally in memory lane mode.  :)  I found this staple of my early diabetes management:

The Red Diabetes Book

The "Red Bible."  This book was given to my parents by the Joslin Clinic when I was diagnosed, and it held the supposed answers to any diabetes questions.  (You can see on the cover there where I was practicing spelling "restaurant" many years ago.)  I thumbed through the book and found plenty of recipes and snack ideas, all using the old food exchange philosophy.  Pages and pages of things I couldn't eat, and small sections of what my lunch options were. Half a cup of spinach, one sugar-free popsicle, rice cakes with peanut butter, those peanut butter nab things ... places to buy food scales and measuring cups ... countless pages focusing on food.  I always hated that assumption that a healthy diabetes life was achieved solely through my dinner plate.

There were three pages on handling diabetes in school settings.  No mention of 504 plans or testing in the classroom or anything about how my fellow students would react.  A short description of the symptoms of low blood sugar and how to treat it, but that was about it.

The pages on blood sugar monitoring and management brought me back to my diagnosis days.  When I first started testing my blood sugar back in 1986, we used a machine that took 120 seconds to produce a result and the strips were color-comparison ones that had to be wiped with a cotton ball and then plugged into the meter.  The color comparison chart seems so remedial compared to the UltraLink on my desk or the Dexcom on my hip.   Here's a screenshot of what we'd compare the color pads to:

Chemstrip color comparison chart

Not much to go on.  (And the numbers were too easy to manipulate.  I remember wiping the color pads on the strip with rubbing alcohol to make the results seem lower.  I wasn't the most responsible kid.)

The thing that kills me is the lack of focus on the emotions of diabetes.  There were only TWO pages on "living with diabetes."  How stress can affect blood sugar management.  How important the impact of a support network is for acceptance and dedication.  I want to rewrite this Red Bible and flesh out more of the parts that count.  Support groups, diabetes blogs, communities ... this is the future of diabetes management.  Meters have improved a little, insulin has improved a smidge, but our methods of support have leapt by such enormous margins that my future health is already brighter.  

My Joslin appointment is next week.  And believe me, I'll be talking about you guys there.

April 07, 2009

Diabetics Running Amuck in New Haven.

I'm a road warrior ... or at least I was this weekend.  And it all started on Friday night, when I met Manny Hernandez for dinner in New Haven, and we were joined by Adam. 

Manny, Adam, and Kerri in New Haven.
 
Plenty of wine, beer, and coffee later (coffee was me - had to drive to Rhode Island after dinner), the three of us were knee-deep in discussions about Dexcoms, diagnosis dates, and our first low blood sugars.  These guys are true kindred spirits and excellent dinner dates. 

One thing that came up was our "before" and "after" with diabetes.  For Adam and Manny, they were both diagnosed in their late 20's, early 30's, respectively.  For me, I was diagnosed when I was in second grade.  Their "diabetes before" included decades of memories and a certain sense of self, not to mention memories without the disease.  My "diabetes before," for better or worse, doesn't include more than a handful of childhood memories without the disease, and my sense of self is coiled around some aspects of diabetes.

"What's better, though?  I mean, there are pros and cons to both and I don't see a definitive 'yay' to either, honestly."  I drank my second cup of coffee and let the caffeine spin around in my brain.

A lot of the people I'm in contact with that have diabetes were diagnosed in their childhood years - Howard at dLife, Christel, most of the Fairfield County dinner ladies - so they are dealing with the same "lifelong" diabetes as me.  But I've also met many late-onset type 1s - the LADA crew, as I fondly call them and then subsequently picture a fire engine - and their life-altering diagnosis must be so jarring, coming into their lives later.  Adjusting to diabetes wasn't much of a challenge for me because it's almost always been there.  I only had a year or two of elementary school before I was diagnosed.  I can't imagine finishing college and then being forced to change everything midstream. 

But I will admit to a bit of a pang of envy as I tried to remember my first low blood sugar while the guys described the recent memory of theirs.

"I'll have to ask my mom," I said.  "She'll remember." 

It's not a debate, believe me.  It's not a question of "Who has it worse?"  Type 1 diabetes, regardless of it's arrival date, is its own cyclone of discovery.  But the discussion made me realize how long I've had this and how old I'm not.  And when people talk about cures, how lives will be changed when a cure for diabetes is found, and even though I don't often think about a cure, I can't help but happily muse about "diabetes after."

I've kept the tags on for 22 years, just in case I need to make a return.  ;)

April 02, 2009

Readers in Need?

The D community comes together.Quick outreach post this afternoon for you guys: 

I received an email from a very generous reader who mistakenly received 550 Freestyle strips (instead of Freestyle Lite strips), and their insurance company doesn't want the strips returned.  This reader wants to offer these Freestyle strips up to a PWD in need. 

So if you are a Freestyle user and you are having some trouble making ends meet on the diabetes financial front, send me an email at kerri (at) sixuntilme (dot) com and I can put you in contact with this kind reader.  They're willing to pay shipping to get the strips sent out, and they would really like to help a fellow PWD in need.

Thanks!

UPDATE:  We found a home for these strips.  Thanks, guys!

Employee of the Month.

Yesterday at lunch, I was browsing at one of my favorite stores and picking through a pile of spring sweaters.  (Buy one, get one 50% off!  I'm a sucker for a good sale.)  So I find two sweaters that are pretty and springy and have that nice, soft cottony feel that you want to rub against your cheek.

Then that feeling hits.  The one where my jacket felt warm and heavy against the spring chill but suddenly made me feel like it was a fabric tanning booth - too hot, too heavy, and like the sleeves were thick with mud.

"Excuse me?  I know it's a weird question, but do you have any juice or candy in this store?"

The pregnant woman behind the counter gave me an odd look.  "I don't ... hang on ... um, I have half of a mini Milky Way bar?  Is that okay?  You just hungry, sweetie?"

"No."  My tongue was too big for my mouth, making it hard to talk.  "Can I just leave these here for a few minutes?  I'll be right back."

Walking with determined, focused steps, I went outside to where my car was parked and unlocked the door.  Leaning in the passenger side, I grabbed the bottle of glucose tabs from the center console.  

"Damn it, two?  Only two are in here?"  The bottle was almost empty, save for two lonely glucose tabs.  I poured them into my hands and ate them at the same time, the glucose tab dust coming out and snowing all over the passenger seat of my car.

"Gee whiz," I said.  (What's that?  Not kidding you on that one?  Fine.  I dropped an F bomb right there, outside of Ann Taylor.  I have no class.)  I noticed a Panera Bread next door so I slammed my car door and walked over there, listening to the Dexcom blaring from inside my purse.

There was a line for lunch.  Four cashiers were working furiously, but the low was creeping up just as fast and my legs were beginning to buckle.

"I need orange juice.  I'm diabetic and having a low blood sugar.  Can you please help me as quickly as you can?"  I stood there in my work clothes and my coat, with my grown-up purse over my arm and started to cry because I couldn't function properly and I was becoming more and more confused.  Not sobbing, not whining, not outwardly breaking down, but big tears rolled out of my eyes without permission and headed for my jawline.  

The boy behind the counter was taken aback.  "Stay here.  Stand here.  I'll be right back.  Don't move."  He ran and returned with a glass of juice.  I moved toward him like goldfish in a pond going for crumbs of bread. 

He watched as I drank the entire glass without stopping, knowing that people in line were watching me and staring and I couldn't bring myself to care.

"You good?  You seem better already, right?"  CounterBoy answered his own question.  "You're good.  You're fine." 

I fumbled with my wallet.  "How much do I owe you?"

"Miss, it's okay.  I'm happy to pay for that orange juice myself.  Please."

"No, I'm diabetic but I have a job.  And I appreciate your help."  The novocaine of the low was starting to wear off a bit, just by knowing the juice was in my system.   "I'd really like to pay."

"Okay, let's just call it a small, okay?   That's a dollar.  A dollar is fine."  He punched the keys of the register.  "$1.05" came up on the digital screen.

"A dollar five.  Okay."  I handed him a dollar and dug around in my pocket for a nickel.  "Here you go.  Exact change.  We'reHe should be employee of the month, damnit. good."

He put the money in the register and wiped his forehead with his wrist.  "You sure you're okay?  Do you want to sit for a minute?"  A guy waiting in line mumbled something about 'flirting on your own time.'  CounterBoy raised an eyebrow.  "Sir, this is a medical emergency.  I just saved her life.  Your sandwich?  Little less important at the moment, okay?"  

He turned back to me.  "You good?"

"I'm good.  Thank you for your help.  I really appreciate it.  You saved the day, man."

"I did.  I saved the day."  He squared his shoulders.  "I'm going to be employee of the month!"

March 31, 2009

Townie Bar Meetup.

"What are you on?"Connecting with other d-folk!

Four sets of hands fumble for their hardware.

Me:  "I'm on a 522."

Karen:  "I have the other one?  The bigger one?  722?"

Erin:  "I've got Minimed, too."

M:  "Animas ping!"  (She reaches into her shirt and pulls out a pink pump.)  "I bet you didn't even know it was in there." 

Where does the question "What are you on?" get everyone to flash their pumps, other than at a dinner with fellow diabetics? 

Last night, four of us (me, Karen, Erin, and M) met up for another Fairfield County dinner at a townie bar in western Connecticut.   Despite the fact that none of us were locals, the townies in the bar accepted us and allowed us to occupy a table for two hours and chat about pumps, pregnancy, and coffee addictions.  (Dear Waitress,  Sorry I yelled to get your attention.  I was excited.  It was coffee!  I'm sorry.)  It's nice to hang with nice people who completely understand the need to briefly bleed before eating, and who get it when your "hose" is exposed. 

It has become a comforting tradition, with the attendees fluctuating dependent on the weather, the season, people's work schedules, etc, but there's always at least a handful of us who have a few hours to spare with new friends.  Note:  Beware of stories taking a decidedly non-diabetes turn, i.e. storing lipgloss without pockets.  ;)

Are you interested in meeting up?  Are you in Fairfleld County, CT?  Email me at kerri (at) sixuntilme (dot) com and we'll add you to the email list!

March 27, 2009

Diabetes Carnage.

I know my daily diabetes stuff produces a lot of waste, like the test strip I use every time I prick my finger and all the packaging that comes along with each disposable insulin pump infusion set. 

But it wasn't until I changed my pump and my Dexcom sensor at once that I realized how much carnage I leave in my management wake.  

Exhibit C (for crap, holy):

So.  Much.  Stuff!

If you scoot over to Flickr, you can see each item flagged in the photo, but the basic gist is that two small bits of technology attached to my body creates a lot of waste.  (The Blackberry is in the photo purely because I forgot to move it.  It isn't related to diabetes management.  Then again, with the number of emails I'm sending from that thing on an hourly basis on the climb, maybe it is.  Digression?  Yup.)

Other PWDs and parents of PWDs (POPWD?) have talked about the insane amount of diabetes-related garbage before, but this one night really showed me how so little goes such a long way - and not in a great way.  And with Earth Day coming up at the end of April, I'm extra-aware of the mess I make sometimes.  Do you guys put your stuff in a sharps container, or do you throw these things out?  I used to be so good about clipping syringe tips and filling those coffee cans and taping them shut with electrical tape, but the last few years have produced medical waste that doesn't look as "druggy" as the orange-capped syringes of my past diabetes life.  ;)

Once, in college, we had a party and threw out a lot of beer cans.  (There were seven of us in one house, okay?)  During the night, animals got into our garbage and we woke up to beer cans and - oh crap - syringes all over the front lawn.  I.  Was.  Mortified and have been paranoid ever since.  How do you guys dispose of your diabetes carnage?  I need some tips, because I'm getting sloppy.

(Also also, SUM may have some downtime this weekend, as I'm moving some web bits around.  So if you stop by over the weekend and hit a 404 or 500 error, please be patient.  I should be back up by Monday morning.  Thanks, and have a good weekend!)

March 24, 2009

Diabetes Alert Day: Do You Need to Know?

Awareness days - we have a pile of them.  But because I am a diehard diabetes advocate, I believe in these moments of advocacy (see also:  World Diabetes Day, Diabetes Month, Raise Your Voice, etc.)

So today is Diabetes Alert Day, and the intention of this day is aimed at people with pre-diabetes and people at risk for developing type 2 diabetes.  There are a number of fine, clickable resources out there to mark this day:

The alert is being sounded today, and if you are affected by type 2 diabetes, or if you are part of the at-risk population, there's no better time than now to get healthier.

March 16, 2009

The "Ellipmachine."

The Ellipmachine ... by Mennen.When I was preparing for our wedding last year, I spent a lot of time at the gym.  A.  Lot.  As in, too much.  If I wasn't at work at dLife or doing wedding-esque things like cake tastings, dress fittings, and bridal shower fun, I was working out and doing my best to keep the stress from fattening me up.

Fitness was my priority.  

But after the wedding, other stuff started to crop up.  Weekends home in RI.  Travel for work.  Writing projects that required lots of attention.  New focuses at dLife.  Every day was this whirlwind of chaos and while I've been having fun and being very productive, my days at the gym were harder to come by.  Before, I was working out faithfully Monday - Friday after work.  But "life stuff" kept cropping up, and suddenly I found myself at the gym only four days a week.

Then it all became a perfect storm of distraction.  I was working late on dLife initiatives.  I was answering emails from my Blackberry into the wee hours of the night and sleeping less.  My wrist exploded in a fit of tendinitis and low blood sugars returned to my life with a renewed sense of determination.  Piles of snow kept falling and the gym kept closing, and on other days, I worked too late to get to the gym before it closed.

My time at the gym went from frequent and intense to only four days a week and pretty remedial.

Not okay, because my body wants to be fluffy.  It may be a family gene pool thing and it might also be exacerbated by diabetes factors, but if I sit still and let nature take its course, my body wants to be a happy 15 lbs heavier.

I, however, do not agree.

But I was frustrated because between feeling stressed and having lows again, my caloric intake far exceeded my burn off.  Thus, I lost any semblance of abs.  (Shame, too, because I liked them while they were there.)  So, in effort to reclaim my abs before I get pregnant and become a happy beach ball swallower, I did my part to stimulate the economy:  I bought an elliptical machine.

Or, as I keep calling it by mistake, an "ellipmachine."

It was delivered and assembled last Monday morning, and I called Chris (who was on business in California last week) to tell him it had arrived safely.  

"It's here!  The ellipmachine!"

"The what?"  

"I mean the elliptical."

It's a nice machine - very smooth and not clunky as to annoy our downstairs neighbors (I do not want to become Shoes) - and I used it every day last week for an hour.  Now I'm able to go out with my coworkers after work for an hour or two and still manage to slide a workout in.  I am also hoping to use it in the mornings (provided I'm able to get to bed at a reasonable time and eek out a 20 minute workout in the am).  My main hope is to reclaim the level of fitness I worked so hard to achieve before the wedding but lost a bit due to that pesky "life stuff."  

Last week, while Chris was out of town, he called one night and I answered, panting.  

"Hey baby ... what are you doing?"

"Dude, I'm on the ellipmachine."

I could hear him laughing.  "The ellipmachine, eh?"

"Oh you know what I mean."

Here's hoping that the ellipmachine can help me get a workout in even when my schedule wants to thwart my good intentions.  I'm ready to battle.

(Take that, early gym closings!  En garde, late nights at work!  Pffffft, snow days!  Come back, sort-of-abs!) 

March 13, 2009

My Mom Says Hi.

I love my mom.It's no secret that my mom is a huge part of my success as an adult with diabetes.  Her support, even when I rebelled against it with all my might, has made me confident in dealing with whatever diabetes has to throw at me. 

My mom has guest posted here a few times in the past (here are her archived entries), and she's offered to share her perspective again.  Reading her posts makes me think about how much the parents of kids with diabetes work so hard to maintain our "normal." 

From My Mom: 

Hello ... Kerri’s mom here! From time to time, Kerri will ask me to do a guest post.  What prompted me to post at this time is her recent blog regarding her old childhood journals. (Yes, she could write like a champ way back when. It’s always been a gift she has possessed.)

The fact that Kerri went to Clara Barton Camp from the time she was diagnosed until she was too old was a blessing in that I was able to hand over the responsibility of her medical care to a very capable and trusted staff at the camp. I don’t think I ever thought of it as “ok, now we can be normal for two weeks.” Maybe her siblings thought there would now be more sugary, tasty treats available during those two weeks that were not hidden in frozen bean boxes.

Parents are responsible for the well being of their children from birth to when they  are able to live on their own. (Not that it stops us from worrying.)  Throw diabetes into the mix and it can be overwhelming at times. We love our children and would do anything to keep them safe and protected. It is our “job.” I looked at sending Kerri to camp as a benefit to everyone in our family. She could bond with children who deal with the same issues she did on a daily basis. They can complain about how over protective their parents are and that we don’t understand what it’s like. No, we don’t, but as a parent these children don’t understand the fear that is ever present in our minds. Will we handle their diabetes care well enough to ensure that they don’t have serious lows or highs? Have we done enough to protect their future health from diabetes complications. It’s a scary ride we parents are on. I guess until they have children of their own … they can’t know how we feel just like we can’t know what it’s truly like for them.

Kerri used to get upset with me when I would say things like “we have to do a better job at…” She said it wasn’t a “we” disease, it was she who had diabetes. I beg to differ! When you are trying to protect your child from the consequences of diabetes or any disease it does become “our” disease as well. How can we let anything bad happen to them? You become the Lioness protecting her cub! I thought I was the only one that knew how to take care of her and I didn’t insist that others help out. If I could go back in time, I would certainly rethink that one! Everyone needs a support network. In a way, Clara Barton camp was that for me.

I needed that two week camp time to regroup. To take a mental health vacation. While she was at camp, I would often wonder how she was doing. How were her blood sugars running? Was she having fun?  But I can say that I wasn’t worried. She was in good hands. We both felt refreshed when camp was over. Kerri would come home having forged some long lasting friendships. She was more confident and determined. Camp allowed her to share feelings with other kids who understood what it was like to live with diabetes. No worries about acting weird when low…they all had been there and done that!

I lost my job as “Protector of the Kerri” a long time ago. She is very capable of handling her life and health. Will I always worry about her? Yes, like I do with all my children. That’s normal. But she is very fortunate in that she is married to Chris. My mind is at ease ... he is my Clara Barton camp!

Thanks, Mom.  For everything. 

March 11, 2009

Diabetes Back in the Day.

Last night, I found a box of old diaries.  I've been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content. 

It's strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I'm not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a "baby." But Butthead said he couldn't do it because he was "diatetic."  The teacher reprimanded him by saying, "That's DIABETIC, and yes you can do this."  I'm not exactly sure why, but that comment bothered me.  Alot.  I think it's because I'm so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about 'HandyMan' on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said "diabetes" correctly. 

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn't help but overhear.  She said, "As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff."  Am I a burden to my family?  Do they resent my diabetes?  Do I have a "normal" life? 

This isn't to call my mother out for saying this.  I've heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break. 

Funny - I've always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that's confusing because I say I don't want to be treated differently at the same time.  It's weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I'm going nuts.  At least at CBC I'm not the only one who feels that way.  If I tried explaining that to my friends, they'd look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  :)

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It's a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I'm not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

(And some embarrassing diary snapshots coming soon ... once I get the guts!)

March 09, 2009

Diabetes + Stem Cell Research = Hope.

Go Bama!  Go Bama!Chris and I were talking the other day about something completely random, when he turns to me and says, "Oh, wait.  Did you hear that Obama is signing that bill to reverse the ban on stem cell research?"

"I did."  

"So?  Are you excited?"

And I thought about the last two decades.  How the veiled promise of "five more years and then ..." and still nothing. 

"I'm hopeful.  You know me, baby.  I'm almost always hopeful, but until it's actually real ..."

He gave me a grin.  "We just keep you healthy and hoping, right?  Well, this is a huge leap forward."

And today, we leapt as President Obama reversed the ban.

We'll keep hoping.  With the JDRF actively leading (and Tweeting!) the charge, and with diabetes on the national stage, progress could actually be made.  Not just a product redesign or another clever device, not just another type of insulin or another pill - real progress.   

I'd love to go from "type 1" to "type: cured." 

(I've been itching to use the past tense for a long time now.)

March 06, 2009

Kerri's Diabetes Technology FAIL.

I've had about three solid weeks of good blood sugar control, with just one or two lows and not many excessive highs.  I celebrated regularly, because this kind of even keel isn't common for me.  And because I'm in hot pursuit of a lower A1C.

So you can imagine my frustration when I had a 400+ blood sugar with no detectable cause - until I realized the pump tubing hadn't clicked into place properly after my shower.  (Something about the sweaters on my teeth and the fact that I was falling asleep face-first into my laptop didn't tip me off, apparently.   I had to wait until the realization of "Hey, haven't you peed three times in an hour?" hit me in full.)

Kerri + Diabetes Technology = FAIL.

(And also, be on the lookout for "fox paws." You'll see what I mean.)

March 05, 2009

I am Spam. Spam I Am.

F spam.Well this has never happened before.

Click.

Subject line:  diabetes 

Email:  rid myself from insulin lowered glucose from 600 mg/dl to avg of 69 mg/dl to118 mg/dl with an A1C reading from11.8 to 5.8 in 190 days check it out [name and URL redacted] doesn't cost a thing...hard to believe but that's life.... 

Fantastic.  Another spam peddler.  But I'm not looking for a war this morning, so I just filed it into the email folder called "Spamtastic" and proceeded to check my other new messages.

Click.

Subject line:  sorry

Email:  I email you before I read your blog sorry that you have a difficult life with diabetes 1 and am sorry I tried to help by referring a wed site to you as you stated "don't e-mail you with snake oils" it's just that somewhere somplace there is help for us for me it's the referral, Your so positive please stay that way and keep helping others as i shall. Sorry for imposing on you

Wait, what?  An apologetic spammer?  They read the How to Pitch to Bloggers post and the one about snake oil?  And they admitted that they spam people for the referral bonus?  Someone who is sorry that they imposed?  And bothered to email me to follow up?

This is a milestone.  I'm not sure what kind, but it's definitely never happened to me before.  Are we getting through to these people?  Are our raised voices actually being heard?

March 04, 2009

Her Dream Assignment.

Vote for Michelle!!!As I've mentioned countless times before, I love the CWD forum folk.  They are compassionate, kind, and always doing their best to raise awareness for diabetes.

I received an email from one of my friends at CWD this morning about Michelle Rago, a CWD mom who is aiming to make a difference using her camera ... and her heart. 

Here are the details: 

"One of the longtime CWD moms, Michelle Rago, has entered a contest - a photography contest. The winner wins $50,000 to photograph her proposed subjects. Her proposal is to document people with type 1, doing both type 1 type things and their favorite things.

In her words: 'I would like to photograph children with Type 1 diabetes doing two things: 1. testing their blood sugar or injecting insulin and 2. doing their favorite thing. I would like to exhibit the photos to raise awareness about Type 1 diabetes.'"

Right now, Michelle is No. 3 in the contest, behind by a good number of votes, but we can help her climb to the top!  Voting goes from March 3 - April 3, so there's time to rally the diabetes community behind Michelle and help her win and raise awareness for a cause we all care so much about.  

Go to the Name Your Dream Assignment site, register, and cast your vote for Michelle.  A win for her is a win for diabetes advocacy!     

February 26, 2009

24 Hours with Diabetes.

This clock is obviously wrong.  Should say 7 am.7:00 am:  The alarm goes off for the first time.  I stumble from bed, find out where my pump has landed during the course of the night, wander off to the alarm clock, bang my hand against it, and then shuffle back to bed to claim another 9 minutes of sleep.

7:09 am:  Alarm goes off again.  Snooze one more time, grab my meter from the bedside table, and hope to test when it goes off again.

7:16 am:  Okay, this is it.  No more snooze, test blood sugar. Whatever the result, it kind of sets the tone for my day.  I’ll correct it, treat it, or celebrate it, depending on the number.  Calibrate the CGM, disconnect the pump, and head off to the shower.

7:20 am:  Connect CGM to my bathrobe on the bathroom door so it’s close enough to pick up a signal while I shower.  Shower quickly so I’m not disconnected from the pump too long.  Carefully dry off to keep CGM sensor and pump site from becoming loose.

7:30 – 8:15 am:  While getting ready for work, put at least underpants on to have something to hook the pump to.  Dress in clothes that make me feel comfortable, fashionable, and able to wrangle in any diabetes technology I’m trying to wear. 

8:20 am:  Grab enough snacks to get me through the day, but make sure the food is d-friendly enough to keep my numbers in line.

8:30 am:  Drive to work.  Check the CGM to ensure I’m not sailing out of range.  For the record, my car has glucose tabs in the glove compartment, in case I go low.

8:45 am:  Time to buckle down.  I’ve got my coffee, my computer, and my meter at the ready.  During the course of my morning at work, I’m testing my blood sugar every hour or so to make sure I’m in range.  Sometimes the blasted dawn phenomenon grabs me and I end up fighting a high for hours.  Other times, a tricky little low sneaks up on me and I have to down some juice and then muddle through the aftermath.  And lots of times, my body behaves and numbers hold steady.  But I still have to check and confirm this, so I’m still actively maintaining diabetes stuff.  And I usually have a snack in the morning at some point. 

Noon-Thirty: 
Lunch time.  I test beforehand, I react to this number, and I try to anticipate what I’ll be eating for lunch.  Most often, I eat carbs at lunch, either in the form of a sandwich or soup or something like that, but food is always consumed at this time.  (I get hungry!)  

1:30 – 5:30 pm: 
Work afternoon.  Looks a lot like the morning, only for me it tends to be a little more even with blood sugars and a little less even with stress levels.  (Something about the afternoons at work tend to bring on the meetings, wacky emails, etc.  Either that, or maybe in the morning I’m too sleep to mind the difference.)  Lots of testing blood sugar and/or scoping out the CGM line during this period.

6:00 pm:  Homeward bound.  But it’s not over, yet.  From here, I have about 30 minutes to change up to head out to the gym, and make sure my blood sugars are high enough to take on an hour of exercise.  (This is one of the only moments in my day when I’m intentionally a bit higher.)  Aiming to be at around 180 mg/dl, I head off to the gym toting my bag crammed with my meter, music, water bottle, CGM receiver, and a fast-acting glucose stash. 

7:00 pm:  (We’re here already?  Man, this day goes by fast.)  Gym is ovah.  Time to test before heading home to see if I need to act on a number, make sure I’m good to disconnect and take a shower. (Yes, two showers.  I hate to stink.)  A shower is followed by dinner.  Dinner is followed by testing.  Testing is hopefully followed by sugar-free pudding with cool whip or something.  ;)

From Dinner to Bedtime:  Evenings are sort of status quo, with lots of options.  Heading out for a movie?  Going into NYC for the night?  Grabbing a drink downtown?  Staying home and working on computer crap?  Perhaps some [hey, something shiny!]  Or grocery shopping, changing out the CGM sensor, cooking (ha!) ...  Whatever the hours of my evening are filled with, I’m still keeping close to my meter and maintaining an eye on my body.

Before Bed:  Go through the whole before bed routine (washing face, flossing, brushing teeth, fighting to keep the cat out from underneath the bathroom sink), and then head into bed.  One of the last things I do every night is test my blood sugar and check my pump reservoir and battery life to ensure I'm good for the night.  After that, I try to fall asleep, with all hell usually breaking loose when the cats run races at the foot of the bed around two in the morning.

Sleep:  Awesome.  Hopefully, there aren't any hypoglycemic episodes throughout the night.  If there are, the Dexcom usually BEEEEEEEEP!s until I wake up.  (No snooze button on that thing, that's for sure.)

7:00 am:  Lather, rinse, and repeat. 

A team of students contacted me and asked me to tick through a day in my life with diabetes.  I tried to do a standard day - one without a wicked low or high - but it's hard.  Variables come raining in from everywhere, and it's nearly impossible to account for all of them.

I've written those kinds of "day in the life" posts about diabetes before, but they never really capture what can and does happen.  I even attempted to do a video, but it didn't cut it, either.  It's hard to show how much instinctive management comes into play, like those moments when we don't realize we're managing diabetes (but we are). 

How would you describe a day in your diabetes life?  Or, when you try, do you get tangled in the same set of variables?  How do we describe something so random and far-reaching?

February 25, 2009

Diabetes Snake Oil.

Snake oil - he haz it.There is no way I’m going to name the person who contacted me, nor would I even think about linking out to their ridiculous product.  But I received an email over the weekend from a tool who I will call Peddler.

Peddler started their email to me by saying, “Hello Kerri.  You can cure diabetes.”  Then there was a link to a YouTube video.  (With instructions on how to cure me, I assumed.)  I clicked through and watched their video and did the whole “rolled eyes” routine.

I am a relatively well-educated patient.  I am by no means a doctor, but I could pretend to be one for at least 8 minutes (until someone asks me to recommend treatment options or draw blood, and then I pass out and they find out I’m a lowly editor).  False claims of a “cure” don’t sit well with me, so I decided to email Peddler back and see what kind of web he would weave.

“Dear Peddler.  I have type 1 diabetes.  I have been diabetic for over 22 years.  Are you telling me I missed a cure?  Best, Kerri.”

His response:  “Yes, it must be possible.  Although it’s not easy.  Did you watch the video?  You can try [product name] and [other product name] to cure diabetes type 1?  The [product 2] keeps my blood sugar between 5 – 6 (European measure).  When normally it will go like a roller coaster.  It are the most advanced products ever made.  I use them myself.  You can find them here.  [Link]. “

My goodness. 

My response:  “You can cure my type 1 diabetes when no doctors at the Joslin Clinic, no researchers, etc. have that ability?  Can I stop taking insulin when taking your recommended product?  My body doesn’t have active islet cells – you can reverse this?  How much does your product cost and what is your personal involvement?”

Peddler’s response:  “No sure, you can’t stop taking insulin.  But if you take the product it might reverse it over time.  I have absolutely no involvement into this.  I just use it myself.  Have been looking for years to try and find a cure myself.  But you must read the information and watch the video.  But there are a lot of products and research outside of the conventional research.”

Then Peddler loses it a little bit, emailing again:  “[Another guy’s name], the health ranger, healed himself of type 2 diabetes through dieet and supplements.  You can read a lot of information on [website].  Do you know anything about farmaceutical companies and their research?  They only want to make money.  They cannot use natural vitamins and minerals because they cannot pattent them.  It’s a big money industry.  I was a shareholder, been very active on the stock market.  I know a lot about these companies.  It’s just like the oil industry.”

The snake oil industry that wants in on my “dieet” and “pattents” and “farmaceuticals?”  And what the hell is a "health ranger?"

I emailed him back:  “It will reverse my need for insulin?  Type 1 diabetes means my insulin-producing cells were attacked by my own immune system.  This product can reverse my own auto immunity?  I am shocked.  Are you involved with this supplement company, because I have to be honest - I doubt the integrity of your intentions.”

Radio silence.  Maybe he had to call back the Mother Ship for guidance. 

Then Peddler comes back out at me.

"Ok, no I'm really not. I'm 27 years old, working in a pipe factory here in Holland. I really am not involved into this company,  I'm a person just like you."

Then he sent me YouTube clips of different people talking about the supplement, and others of people showing how a certain diet plan "cured" their diabetes.  How if I just authorized some payments from my PayPal account, I'd be right ready for a life without diabetes.  (Come on, Mr. Pipe Layer from Holland.)  After clicking around for a while, I had a good sense of how much snake oil is being peddled to people with diabetes. 

And the thought made my stomach spin.

I can't help it.  This shit makes me crazy!  Don't market your false cures to me.  Nothing I eat is going to cure me.  No amount of raw vegetables or coffee or protein powder or amino acids or special high-fiber, low carb, strapless, backless nutrition bars.  Unless you have a way to keep my immune system from taking out my body's own insulin-producing cells, do not email me.  Stop preying on people with diabetes.

And for crying out loud, use spell check, would you?  

February 19, 2009

BlogHer '09 - PatientBloggers.

BlogHer '09 - Are they ready for PWD??Hey guys - I've been wanting to share this news for weeks now but just received the "green light."  I'll be at BlogHer '09 this summer in Chicago as part of the PatientBlogger panel!  (I'm grinning so big right now that my face actually hurts.) 

Along with two other panelists (who are announcing their good news tonight or tomorrow, so I won't steal their thunder), I'll be representing the diabetes blogosphere PROUDLY, talking about the power of PatientBlogging.  Here's the panel description:

Identity/Passions: PatientBloggers - You Are Not Your Disease, You Just Blog About It Every Day: 

Chronic or acute disease can change your life overnight…and make you feel as though you’ve lost control of your own body. PatientBloggers find support, information and resources, and regain a sense of control via their blogging. But are there also down sides? Privacy concerns abound. Being identified as just a person with a disease can feel confining. And what if you’re cured or in remission? Where does your blogging (and more importantly: That close-knit, supportive community you've developed) go from there?
YAY!  I'm already a mix of nervous/ecstatic/honored/OMGWTFBBQ and I am so excited for this opportunity. 
 
If you are going to BlogHer '09 in Chicago, please let me know!  I'm looking forward to meeting you!!

February 17, 2009

Larry Bird, At Home.

Larry doesn't let me slack.  Damnit.Brrrrrrrrrriiiiiiing!

"Hello?"

"Keeeeeeer."

"Larry!  dude, how the hell have you been?"

"Dude, don't call me out on being MIA.  You're the one who has been hiding out lately.  Eating kettle corn by the fistful.  Skipping the gym to have dinner with those Fairfield County Dinner ladies ..."

"Hey, wait a second.  I'm not allowed to have a social life?"

"No, you can, but you need to stick with the workouts.  And not just going, but like you need to mentally be there."

"What?  I go!  I'm there!"

"Kerri, you know what I mean.  Over the last two months, you have read seven books while working out.  You can't work out hard when your nose is buried in a book!"

"I'm trying to relax a little bit, too.  Managing stress just as important as exercise!"

"It totally is.  You don't think I got stressed out that January day in '85 against Portland, when I had to hit that baseline jumper at the buzzer?  But you aren't de-stressing.  I've seen you with your Blackberry while you're working out.  Your BLACKBERRY?  That's how you avoid stress?"

"Larry!  How the hell did you see me?"

"Skylights.  I climbed up on the building.  But anyway, you need to tune back into those workouts, Kerri.  You are going through the motions, and that's not going to help you lose those 10 pounds you've gained since the wedding."

"Five pounds, smartass.  And wait, did you say you were peeping through the skylights?"

"Five.  Whatever.  And yeah, the skylights are comfortable.  I usually bring headphones.  But anyway, I want to see some serious effort from you this month.  You were doing really well, and I want to see you back in better shape by the end of March, okay?"

"I can do that.  Actually, we're buying an elliptical this week for the house, so now I can do you at home."  

"That joke never gets old for you, does it."

"Nope."

"Okay, Ker.  Keep it real, and don't let me see you with that frigging Blackberry on the treadmill anymore.  Got it?"

"Got it.  Thanks for checking in, Larry."

"No problem.   Happy belated birthday!"

"Thanks!  Stay off the damn skylights."

Click.

February 16, 2009

Friends for Life Scholarship!

This summer, the Children With Diabetes "Friends For Life" conference is taking place in Orlando, FL in July.  Last year was my first time at the FFL event, and it was beyond inspiring.  Now there's a chance for people with diabetes to attend through the help of the Diabetes Scholars Foundation!

Here are the details: 

"The Diabetes Scholars Foundation will provide financial assistance for at least ten young adults (ages 18 to 24) to attend the 2009 Children with Diabetes Friends for Life Conference at Disney's Coronado Springs Resort from July 7-12, 2009 in Lake Buena Vista, Florida. The conference is a gathering of world-renowned clinicians, researchers, physicians, adults, children and families with diabetes. It offers many opportunities to learn the most current information in diabetes care."

If you are between the ages of 18 and 24 and you want to apply for this scholarship, download the application and go for it!  Entries must be postmarked by April 15th - so there's still time to apply! 

Friends for Life is an event that can change your life. I'm so excited to be attending again this July - hope to see you there!

February 11, 2009

Wrist and Shout.

It's like the metal arm that Beyonce wears in "Single Ladies," sort of.  Or not.About two weeks ago, I had this little, nagging pain in my right wrist.  Not so much at the bendy part, but on the outside of it, right on the bone.  It was sore to the touch, aggravated by movement, and hurt when I woke up in the morning.  It seemed to get worse every day.

So, because I'm a very bright girl, I didn't do anything about it.  Instead, I went to the gym, continued to work feverishly in efforts to meet some writing deadlines, and even finished a scarf I was working on.  (Crochet.  Yes, I am a Grammie-in-Training, it seems.)

Thanks to all of this injury aggravation, I finally had to get myself to the doctor's office yesterday.  The phone call to the nurse/receptionist, as always, was awkward.

"Hi.  It's Kerri Sparling.  I think I have carpal tunnel or some nonsense."

The nurse laughed.

"Hi, Kerri.  Sure, can you come in this morning at 11:45?  So we can check out your nonsense?"

(They are so patient with me.)

"Thanks, see you at 11:45!"

When I arrived, my wrist was throbbing after a morning's worth of mouse-clicking and typing at work.   After being weighed (five pounds since the wedding - more on that later.) and having my blood pressure checked (120 over 72 - good to go), I waited for Dr. CT to visit me.

"Carpal tunnel?"  She said, walking into the room with a concerned look on her face.  "And hi, Kerri.  Carpal tunnel in diabetes is common, but let's make sure that's what you have going on."

"It hurts here," I said, pointing to the outer right hand side of my ... well, my right hand.  "And when I lift it in a pulling motion, it doesn't hurt.  But a pushing motion and a lifting motion kills."

She took my hand and pressed on the sides, asking me to flex the tendons.  "Here is the worst?"  

"Yes.  Yup, right there."  

"Well, the good news is that it isn't carpal tunnel.  It is tendinitis, though.  I'm sorry because I can tell this is making you very uncomfortable.  What I want to do is start you taking Advil three times a day, wearing a wrist brace while you sleep, and layng off the mouse as much as you can.  We need to let this rest so it can heal properly, okay?"

I'm like an addict.  My Internet-itchy fingers started to quiver.  

"Ah, staying off the mouse will be tough because I work all day on computers and I have a tendency to write a lot when I get home at night."   

She shot me a look.  

"Okay, okay, Dr. CT.  I will be mouse-free as often as possible."  Possibly a lie, but I'll try, anyway.

Tendinitis.   Another side dish that seems to come with diabetes.  Fantastico.  Anyone else have any experience with this one?  I'm looking for fast recovery and yet the ability to remain bloggy.

Edit:  Great idea from George and some folks on Twitter - might need to Bedazzle that shit! Now I just have to order one.  ;)

February 05, 2009

Vlogging While Low.