Video: Children Diagnosed With T1D Under 2 Years Old.

We interrupt this not actually scheduled blog break to tell you that there's a new group video today from the You Can Do This Project.

In case you need a reason to watch it, here are a few.

"We went in [to the pediatrician's office] and I told him that I thought my son had diabetes, and they told me that he did not - that children that young don't get diabetes. They checked him for strep and flu and both came back negative. They tried to send me home, telling me that he had just a virus and that the drainage was making him thirsty, but I knew there was something wrong."

"The doctor did a urine test [at her one year Well Child appointment] because she had a history of UTIs. Fortunately there wasn't any bacteria in her urine, but they did find sugar. The doctor thought this was an error, so they did a repeat test and again found sugar. There were really no symptoms."

"He had started breathing kind of funny, so my husband and I took him to the emergency room. We were told he had Bronchitis and he would get better. By Thursday of that week he was not able to stand on his own anymore, and he really could not stay awake. We took him to a children's hospital and he was finally correctly diagnosed with type 1 diabetes. His blood sugar was around 500." 



You'll hear from five parents whose children were diagnosed with type 1 diabetes before they turned two years old. My hope is that if you are already a parent of a young child with diabetes, you'll find some comfort in knowing you aren't alone. I hope the road seems less bumpy over time as your fellow travelers point you to the less turbulent parts of it. I hope that feeling of "me, too" relieves even the slightest bit of the anxiety, fear, and discouragement you may know.

My other hope is that conversations like this one help spread the word on what the symptoms of type 1 diabetes are. As these parents explain, babies can't tell you how they're feeling. It becomes very, very important to know the signs - it could save a child's life. If a child you know is experiencing any combination of the list below, please consult with a doctor immediately.

• excessive thirst
• frequent urination; soaked diapers
• drowsiness and lethargy
• increased appetite
• sudden weight loss
• fruity, sweet odor to breath
• heavy, labored breathing       from JDRF.org

"Keep Going."

The minutiae of my diabetes life is looking pretty blurry lately - it's less "paying close attention" and more "auto-pilot".

I dipped my pinky toe into the CGM in the Cloud waters last week by downloading Chromadex, and thereby downloading (for the first time, at home) my Dexcom G4 CGM data onto my Macbook. It's hard to believe I'm doing well when those pie charts are predominantly lemon.

But, as a famous fish once said, I need to just keep swimming. It may not feel comfortable or look pretty or get me very far, but it's worth doing.

Or, another way: just keep going.








(You can find the photo set for these "Words of Hope" on the You Can Do This Project Facebook page.)

Video Reboot.

Just a quick note to say that the You Can Do This Project has a new introduction video:





We hope you'll continue to share your story, and encourage others to do the same.

Video: Diabetes and Mental Health.

You Can Do This Project has really ramped up the video production lately, yeah?

Today we published the latest in the "We Can Do This" video series - a discussion on how living with diabetes impacts our mental health. I know this isn't an easy conversation for many to have, but talking about it is important. When we don't see or hear anyone else mentioning it we start to believe we may be the only one who feels depressed, anxious, or hopeless. We feel overcome and overwhelmed. We wonder if it's worth it to even try.

Isolation is like a poison for mental health.

I hope that if any of this sounds familiar to you, you'll take some comfort in seeing these faces and hearing their words. Depression, for example, affects people living with diabetes at twice the rate of the general population.

You are not alone.





Be sure to check out our video on diabetes and anxiety, too, if you haven't already seen it.

If you'd like to share your story of how living with diabetes impacts your mental health, You Can Do This Project is also looking for guest posts to feature in the month of May. Get a hold of us - what you say could be exactly what someone else needs to hear.

Encouraging Independence.

I couldn't be more proud of the video You Can Do This Project published this morning. It features a group of parents that are in the midst of encouraging independence in their own children and teens when it comes to the responsibilities of diabetes care. They were willing to open up about their struggles and successes in the hopes of reassuring other parents that if they can do this, you can do this too. 

Click on over to the You Can Do This site to watch the video.

Dexcom G4 Platinum: What I Like (and What I Don't).

A baby and 14 months later, I finally can check "do a follow-up YouTube video on how I like my Dexcom G4 Platinum" off of my to-do list. Remember that unboxing one?

I realize none of this is earth-shattering news, but hey, you know, might as well provide some unsolicited user experience feedback. Mostly I did this so I can stop thinking to myself, "I really should get around to that..."


 

(I should also note that this video assumes you already know the basic "pros" like, "It tells me trend information!" and "It alarms for high and low BG parameters that I can set!", and "cons" like, "I have to wear a medical device!" and "Holy hell this thing is expensive!".)

#DWontStopMe: My Video.

The "Diabetes Won't Stop Me" video launch is today!

Here's mine:




Make sure to use the hashtag #DWontStopMe when you share your video! (Or, tag me - @txtngmypancreas on Twitter, or @textingmypancreas on Instagram - and I"ll find you that way, too.) I'm excited to see everyone's videos!

All of the #DWontStopMe posts are being curated here: http://youcandothisproject.com/category/dwontstopme/.

Diabetes Won't Stop Me.

Whether you're a kid or an adult, type 1 or type 2, diagnosed recently or decades ago, MDI or insulin pump, diet and exercise or insulin therapy... I think one of the things we can all come together around is the idea that diabetes doesn't have to stop us from living the lives we want to live.

You can call it resilience... hope... optimism... stubbornness... whatever it is, it's a part of us that fights against the idea that living with a chronic disease limits us. And it can be comforting - even inspiring - to see others are "just like us" succeed and struggle and face the same things we do.

"Me too!" is a powerful emotion, no?

It's with that mindset that I'm announcing this: You Can Do This Project and Jerry the Bear are partnering to launch a new video campaign called "Diabetes Won't Stop Me". And we want you to join in!

The idea came about after watching the video below:



... and realizing how inspiring it would be to see dozens - hundreds! - of short videos from all sorts of people in the diabetes community, just like this! We want you to share why "Diabetes Won't Stop Me".

So here's what we're asking:

• Make a short (less than 30 seconds!) video telling and showing us about your biggest dreams and goals - or if you've already accomplished some, share what you did!

• Starting on November 14th (yep, World Diabetes Day!), upload your video to somewhere like YouTube, Vimeo, Instagram or Vine. 

• Here's the important part - be sure to tag your video post with #DWontStopMe, so we can find it! You can also use the submit form on the You Can Do This site, if that's your jam. Every video (or photo, if you're video-shy) we find will be featured on youcandothisproject.com, as well as Jerry the Bear's Facebook page.

I can't wait to see what you share!

The Bright Side (Of Diabetes).

I was pretty crabby yesterday, so, like I do, I decided to turn it around by making a list of things to be happy about. Or, at least, things that can be considered "the bright side" of having diabetes.

Do any of these make YOUR list?

About those scarves: I bought those from Hanky Pancreas; they were not freebies, and no one asked me to mention them. They also aren't cheap (around $40 a pop), but for good reason - they are extremely well-made and cleverly designed. I am in love with mine.

Dodge, Duck, Dip, Dive, and Dodge.

Diabetes sometimes feels a lot like dodgeball, except no one is wearing kneepads and you're trying to dodge glycemic excursions instead of a rubber ball to the face. Which, actually, isn't a bad metaphor for that feeling.

I'm glad you're all on my "team", especially on the days I'm not playing my best.

You Can Do This: Joe Solo.

Last year was the first time I became aware of a guy named Joe Solo. (Actually his full last name is Solowiejczyk - much like my own name, it's often mispronounced.) My introduction came during the Friends For Life conference last year, and as it was my first time there, the whole thing was new to me. I didn't know that CWD gave out awards each year. I also didn't know why the room of 3,000 or so people suddenly rose to their feet during the banquet dinner one night, generating loud applause peppered with "Wooo!"s and whistles.

"Who is this? I don't even... but everyone else is clapping. Okay." And up I stood, clapping along with them, for this stranger on stage. It was later mentioned that he had marked 50 years with type 1 diabetes earlier that year, so okay, that's pretty cool, but still - I was perplexed. Why were my friends so in love with this guy?

Then I attended what I believe was called "Diabetes Burnout" - a session Joe led. Literally within the first minute of his opening remarks, it hit me. Oh. This guy. This guy speaks my language - including the bad words! I love this guy! And I got it. It happened again this year; I chose a session that ended up not being what I expected it to be, and taking the suggestion that was presented to us on day one of "if you're in a session and you don't dig it, it's okay to get up and leave and find one that suits you", a few friends and I headed to Joe's session. Within the first ten seconds of entering the room, I felt as though I had found "home".

It's not enough to tell you that he "gets it". I'm not sure it's enough to tell you that he might be one of my favorite PWDs to listen to; that the wisdom he drops will blow your mind, if you haven't heard it before; that he is what I think the epitome of the spirit behind You Can Do This is. He's not perfect, and he realizes that. He celebrates that. And you know what? If Joe can survive type 1 diabetes for 50+ years with the attitude and personality he continues to have - there's a lot of hope for the rest of us.

That's Just... Love.

Saturday morning was an early one, as the alarm went off at 4:30 am. Why so early? It was JDRF Walk Day, yo!

With Jess' help, we brought the You Can Do This Project to some of the hundreds of families in attendance. We spoke with kids, parents, and adults alike. We met a mother whose son had been diagnosed just three weeks ago - they were there to meet other families, and to see what insulin pumps were all about. We watched the light click on behind people's eyes when we transitioned from "people are telling me about something" to "people who know" - as soon as I'd spot a pump on someone, I was quick to gesture to my own. All of a sudden, they were much more interested in what we were saying.

It was also fun, as it always is, to have a buddy with diabetes on your team. When an adult with type 1 mentioned how difficult it was for her to battle post-breakfast highs, Jess and I clicked on our Dexcom receivers and showed her that she wasn't alone. (Oh hi, 323 mg/dL.)

We also encountered a woman at our table who was just acting... funny. Her words weren't making much sense; her eyes darted all over the place. She spoke louder than necessary, even with the crowd. A Medtronic pump was clipped to her pocket. "I should really do [a] test, but I don't have my glucometer. Left it at home", she mumbled, and we got to work: Jess quickly offered, "Do you want to use mine?", and the lady readily accepted. While Jess lanced the lady's finger, I fumbled through my bag for glucose tabs.

A 44 mg/dL flashed on the screen. "Oh. 44. That's low", said the woman; acknowledging and then immediately dismissing the information. She picked up a marker and began writing on one of our marker boards.

"Hey... why don't you eat some glucose tabs first, okay?", one of us cheerfully suggested. I thrust a vial of tabs in front of her; the top popped open and ready to go. She stuffed two tabs in her mouth and chomped away; trying to make conversation at the same time.

"Oh! These are actually good! What kind are these?" (They were GlucoLift Wildberry - I still had a sleeve of them in my purse from FFL.) Just then, her daughter (or at least someone that age that knew her) walked up, and wanted to know where to order the tabs. (Amazon, yo.) I was still sifting through my purse, trying to find more glucose for her - a bag of fruit snacks. Down they went.

Whether she started feeling better or not, we weren't sure, but she was ready to take off. "Thank you so much, you guys. Thank you. I needed to test, and you even poked my finger for me. Thank you. That's just... love. You guys are so nice. Thank you."

That pretty well summed up the feeling all morning - love.

LivingVertical.

On Tuesday morning - the finale of the Roche Social Media Summit - our group was given a chance to hear from the rock climbing, type 1 diabetes-having, and all-around inspiring Steve Richert. Together with his wife Stefanie, he founded LivingVertical - an organization that aims to "empower people with diabetes to overcome daily challenges" by showing what you can do (hat tip!) with diabetes. Project 365 is a self-imposed initiative that Steve and Stefanie signed on for - a documentary they're filming that requires Steve to climb every day for a year. It means that they quit their jobs, sold their home and most of their worldly belongings, and packed up their car to go live on the road while making the documentary.

Dude. Yeah.

Here's a snippet of Steve's talk, along with a bit of the Q&A session:




He was also nice enough to agree to film a You Can Do This video, and share some images and climbing footage to go along with it:



A little fundraising call-to-action was announced as well: Roche has gotten behind what he's doing and will be donating $1 to Steve's foundation, LivingVertical (up to $15,000) for every "like" that this video gets. Head to www.stevesmountain.com to find out more about Steve and his journey, and follow their blog at www.livingvertical.org.

Go Steve, go!

Friends For Life: The Outtakes.

I think this is my last FFL post. Really. I'll shut up about it now.

Along with the bonding, learning, and misty eyes, we also had a lot of laughter. A lot of silly. A lot of video that we couldn't really use.

Unless you make a blooper reel, that is.

You're Beautiful.

Yesterday, my friend Wendy shared something about her young daughter on Facebook.

And from yesterday until a few minutes ago, Sara, Jess, and I aggregated some of those affirmations... and now we're sharing them.

I WEAR GLASSES AND A PUMP AND MY FACE
ONLY GETS STUCK LIKE THIS SOMETIMES

For Wendy's daughter (who was - coincidentally? - diagnosed seven years ago TODAY), and anyone else who has to wear a lot of hardware: you can do this, and you can ROCK IT.

Wish You Were There.

For those who wanted to attend, but couldn't.

For those who did attend, and want to relive a bit of it.

For those who have no idea what all of these acronyms (CWD, FFL, YCDT, OMG) are about.

Thank you.



P.S. I set up a seperate Twitter account this morning, too - go follow @YCDTProject!

Highly Uncomfortable.

If we're connected on Twitter or Facebook, you may have seen that I had a bit of a scary HIGH on Friday. I haven't seen a number like that in... well, a really long time. Frankly, it freaked me the heck out.

So what can you do when it all goes wrong, despite doing everything "right"?

Apparently you grab the maple syrup out of your fridge, use groan-worthy puns, and attack a lion. (Sorry, Medtronic!)




(P.S. In case you're wondering who my furry friend is, he's Lenny the Lion - Medtronic's insulin pump mascot for kids, and kids at heart. His stomach, arms, legs and tush are made from polyurethane foam, which is fur-free and ready for kids to try out pump infusion sites on for practice. He's available from Medtronic's online store, and also from Build-A-Bear.)

(P.P.S. Disclosure: I received a free Lenny from Medtronic, as they sent one to all of the diabetes advocates who attended the Forum last month. I'm pretty sure this wasn't the use they had in mind.)

Hope and Acorns.

On Saturday, Aaron and I got all gussied up to attend a local JDRF Gala.

I had on purple heels I could actually walk in, a glittery handbag large enough to actually hold the things I needed to bring with me, and a folded up piece of paper with the mini-speech I had written that morning. (I like to tell myself that I work best under pressure. Or panic. One of the two.)

This is the "quick, take a picture of me before
we forget" shot. Sassy!

I was asked a few months back if I would be willing to share my story as part of this chapter's "Fund A Cure" video for the 2012 Gala. A camera crew came to our house in February and we did things like play fetch with Billy (you'll notice that he suddenly has no interest in his favorite toy once cameras are rolling), go for a walk (of course it was super windy) and I spoke about my diagnosis, finding support online, and what parts of life with diabetes have been most difficult. 

My previous impressions of Gala videos led me to be a little cautious - I wasn't interested in being portrayed in a feel-sorry-for-me, tear-jerker sort of way. I thought they did a nice job of sharing both my and another young woman's stories in a realistic but positive light. (And yes, you'll notice that I'm a huge JDRF supporter.) But, don't take my word for it - make some popcorn, grab a comfy chair and watch it for yourself.

I was also asked to say a few words (around 30 seconds to a minute) following the video's presentation. As Molly and I stood on stage, the video drew to a close and the emcee introduced us to the audience of over 400.

We received a standing ovation. I really, really didn't expect that - neither of us did. (And though I feel a little like it's boasting to even mention it, it's the first time in my life that I can recall it happening, so I kind of feel like it's okay just this once.)

I'm grateful for a lot of things from this experience: for the opportunity to bring an adult voice and story to the JDRF narrative; for the chance to work with such passionate people through the whole process; for the generous audience (they surpassed their fundraising goal for the night!) who contributed to the work of people much smarter than I.

Organizations like JDRF help to provide people like me with what I think is one of the most important things required to live well with type 1 diabetes (aside from insulin): hope. And on the days when I find some, I try to store it up like a squirrel would do with acorns for the winter. A bad day can hit at any time, and it helps me to turn it around when I have a stash of these reminders - of how far we've come, and how many people are out there working hard to end this disease.

We Can Do This.

I've been working on something new for the You Can Do This Project for several weeks now, and it's finally ready to be unveiled!

Go head over to http://www.youcandothisproject.com/ to see what I'm talking about. I hope you like it.

#shortestpostever

Asking For Feedback.

Over the past several months, I've been running this video project thing called You Can Do This. It has been awesome, and while I'm so very proud of everything that's been contributed and the impact it's had on people, I feel like there is potential for it to do so much more to help people feel okay about this whole 'living with diabetes' thing. There are so many more people to reach. So much more good to do.

(I also will mention that there have been some behind-the-scenes things that almost happened last year, but because of timing or other reasons, just didn't. Which is a huge bummer, because they would have been awesome. Those doors aren't closed yet, however.)

My feeling is that while I may have created the project, I may not necessarily know everything there is to know when it comes to carrying out all of my ideas, or when it comes to expanding the project's reach. I am a fan of crowdsourcing, and I'm hoping you'll help me a bit with this.

In an effort to figure out both where it's been and where the people who are helped by this stuff would like to see it go, I created a survey that you can find by clicking here. It's just 9 questions (but two pages - just click "next" at the bottom to find the last five questions) and shouldn't take too long, but I'd really appreciate any feedback you can give me. I want to make sure I'm staying true to what people expect and want from You Can Do This - because it's about you guys, not me.

What's that? You'd like to be bribed in order to take the survey? Well, fine. Here you go.

Updated: I should mention that I'm leaving the survey up through the weekend, so it will close on 2/19/12 at midnight.