Friday, July 29, 2011

Reaching Into The Dark.

"Dare to reach your hand into the darkness, to pull another hand into the light." - Norman B. Rice


So many that advocate for diabetes, and who have found the incredible support system online referred to the "DOC", have a dilemma.

We didn't start out being these mostly-well-adjusted, dealing-with-our-feelings, know-we're-not-alone-and-never-have-to-be kind of people. (Well, some of us might have started out that way. I know I didn't.)

There was a time where many of us felt like the only person with diabetes in their zip code. We may have been the only ones in our lives who had to deal with this malicious, manipulative monster every day.

At some point we found the DOC, and we came to realize that we weren't alone in this. We found value in sharing our experiences, words of support and good deeds with one another. Community and validation can help us emotionally, spiritually, and physically. We find courage and motivation; laughter and healing. We think, "Me too!", and a whole other world of possibilities opens. We think, "maybe I can do this."

Pretty powerful, isn't it?

So that's where this dilemma comes in - there's only a very small portion of "us" (the "us" being people with diabetes) who have this support available to them. For a variety of reasons, the overwhelming majority of PWDs either don't know about the support they can find online, or they don't have access to it. The dilemma becomes: how do we reach the unreachable?

The latter issue is probably beyond our control. The former, however, we can work on.

In an effort to do just that, I've added a resource available to anyone who would like to help spread the word offline about the You Can Do This Project. Thanks to the graphic designing wizardry of Meredith, there now exists a flyer that can be downloaded and printed from the You Can Do This Project website. It explains a little bit about what the project is, lists the URLs for the website and YouTube channel, and puts a few faces to the name of the project.

This way, you have something tangible and ready-to-go (just download it and print as many copies as you want) for the times you'd like to spread the word about You Can Do This.

I hope it's a helpful resource, and I'd love to hear where it gets distributed, if you choose to share it!

                                                                  * * * * *
This week's Hope Paige giveaway winner is "Grammie"!

Her comment was:

"Grammie said...

Love all the YCDTP videos and blogs, and I love the cute Med Id's would love to win one.

July 28, 2011 4:38 PM"

Congratulations! "Grammie", please send me an email at textingmypancreas (at) gmail (dot) com with your contact information (phone number and preferred email address for communicating with Hope Paige), and I'll get the ball rolling on your new medical ID!

Thursday, July 28, 2011

Another Hope Paige Giveaway!

Today marks the fourth Hope Paige Medical ID giveaway opportunity for the You Can Do This Project community - go leave a comment on the You Can Do This Project tab on this site (http://www.textingmypancreas.com/p/you-can-do-this-project.html) for your chance to win one of six designs! Your comment must be timestamped before midnight CST tonight, on that page, in order to qualify for this week's giveaway.

Learn more about the Hope Paige Medical giveaways on this post: http://www.textingmypancreas.com/2011/06/giveaway.html

Learn more about the You Can Do This Project (and see randomly selected featured videos, along with updates and news as I have it) at the project's official home: http://www.youcandothisproject.com/

Learn more about Hope Paige Medical by visiting their website: http://www.hopepaige.com/

And good luck! :)

Tuesday, July 26, 2011

Videos And Stuff.

So, I've been video'n lately. (Is that really a verb? No? Can it be? No? Um, too late, I guess.)

Head over to Diabetic 365, where I had the honor of being interviewed by VJ for episode 13 of "People With Diabetes Stories"! Make sure to watch for the squishy foot derailment. (It will make sense - just wait.) We talk about growing up with diabetes, what I hope to come out of the You Can Do This Project, and how I knew Aaron was "the one". (At least, when it came to how he handled/s my diabetes.)

And second, Billy and I also did a short little video in response to this video support of the Diabetes Hands Foundation's annual fundraising drive for TuDiabetes.org (which starts in September - just helping to spread the word a little bit early). It's only 15 seconds, but you get to see Billy in it, so I think it's worth it. :)




(That's also a pretty epic facial expression that YouTube chose - thanks, guys.)

And lastly, I'm starting to feature randomly selected videos for the You Can Do This Project over on http://www.youcandothisproject.com/, so you have another reason to visit that site often... you never know which one I'm going to pick!

Monday, July 25, 2011

HumaBLOG.

A few weeks ago, I stumbled onto a video from a site named "humaBLOG" that left me laughing.

Laughing, because it was so cleverly (and cutely) executed! A fast-motion video of someone sketching out their diabetes diagnosis story, with the author vocalizing the story through a voiceover. A simple idea that had to have taken a ton of work.

I had no idea who had created it, but I wanted to find out. And then, as sometimes happens, I completely forgot about pursuing it further.

Then on Saturday, I saw this tweet from @rachellynnae about her You Can Do This Project video, and it all fell into place for me. I felt so silly for not making the connection earlier - I actually knew who had created that first video! (Sorry, Rachel!)

Here's her latest video: for the You Can Do This Project!


Because I think what she does is so fantastic, I wanted to share her story with you. Rachel Scott was kind enough to answer some of my questions, and I'd like to share her answers with you!

Kim: Rachel, thank you so much for letting me interview you! For those who don't know you, can you tell a little bit about yourself?

Rachel: Well, I am a 20 year old college art student working toward a Graphic Design degree. I was diagnosed with type 1 diabetes when I was eight years old, but that wasn't the first or last time my family was faced with a diabetes diagnosis. My mother was diagnosed with type 1 diabetes when she was eight years old as well, and a year after my diagnosis my little sister was diagnosed with type 1 diabetes at the age of three. Every summer I work as a counselor at a camp for children with diabetes and it is what I look forward to every day all year long. So, I think it could be easily said that my life is pretty filled with diabetes.  That's why I have been looking to find a way to create art that reflects me and diabetes.

Kim: What is "humaBLOG", and how did you come up with the idea for it?

Rachel: humaBLOG is really a way for me to share my stories about my diabetes. In the past I have had countless conversations with people about diabetes and sometimes they really understood what I was saying, but most times they had no idea. So I wanted to have some sort of outlet to share these stories to people who would actually understand what I was going through. [...] I came up with a name (which really just came from the top of my head one day while preparing my insulin pump for a site change) and then I wanted to find a different way to share my story.


Kim:  I love, love, love your videos and drawings. How long have you been creating art (diabetes-themed and otherwise)? 

Rachel: I have been drawing for as long as I can remember. But my love of creating art came when I took my first art class in high school. Before taking traditional art classes I wanted to go into the medical field (specifically Endocrinology). I even began taking classes in the medical field before I realized that art and communication was the direction I needed to go. Recently I have taken many graphic design and multimedia classes and that's when I learned how to create digital pieces of art, which of course is my true love. In more than one of my art classes along the years I have used diabetes as a project idea. Mostly just projects explaining me. But recently I had an opportunity to do an advertising project for the diabetes summer camp that I work for, and I had a blast creating it.

Kim: Was there a specific moment that triggered the idea, "Hey, what I want to do with art could translate to what I want to say about diabetes, too"?

Rachel: Actually this happened pretty recently. I have a fantastic professor that I think of as my mentor. He suggested I find my niche in the art world and that I could do really well in something that I truly care about. In my first animation class we animated one of our favorite childhood story books. I enjoyed it so much I began constantly thinking about what else I could animate. I began to think of my childhood, and what kind of interesting stories could come from that. Then I realized that my most memorable stories were about diabetes. I knew then that I had to do something with diabetes and art.

Kim: Can you tell me about the process of making a video like "The Day I was Diagnosed with Juvenile Diabetes" (which is the first video I found from you)? It looks like it could be really time-consuming.

Rachel: Well, with "The Day I was Diagnosed with Juvenile Diabetes" I had an idea in mind of what I wanted the video to look like. So at first, I had to create some sort of sketches and a story board to work from. But after that, I just set off the camera and drew out the cartoons. I'd like to say it was all done in one take but in actuality it was about two or three takes to get it the way I wanted. After all the drawing, I imported all the video into an editing program and got to work on adding the video, recording voice overs, and adding music. All together it took me about two days of work. However in my newest video I tried my hand in some animation and that took quite a bit longer to get everything to move together. I had to draw everything out, scan it into a photo editing program, make adjustments and move it all into an animation program, and then finally I get to make everything move. It takes a long time, but I enjoy every minute of it!

Kim: What is your favorite project/creating of yours so far, and why? What sort of feedback do you get from others?

Rachel: Picking my favorite project is almost like picking my favorite child. But if I had to choose, it would definitely be my very first art/diabetes video project about my diagnosis. I wasn't sure if anyone was going to get it, really. I honestly just created it to get out of a writer's block for a speech I was writing for school. But I couldn't believe the amount of people who enjoyed it! I had been a quiet member of the DOC for a while but once I got the video out I was welcomed into the DOC so graciously. I was just amazed on how supportive everyone was with my video. I even got a few responses from people who were recently diagnosed telling me that my video helped them. I'm so glad I procrastinated on my speech to make that video.

Kim: I'm glad you did, too. What would you like to accomplish/try/create in the future pertaining to art of the diabetes persuasion? What can we look forward to seeing from you soon?

Oh, it's so hard to tell what I will make in the future. When I make projects the idea just comes to me out of the blue. I am going to continue to make some more animations and some more art. I have quite a few diabetes stories that I want to make into humaBLOG videos and I have quite a few other ideas that I need to sort out in my mind. But I will definitely be creating more projects - I can promise you that!

Thank you so much for sharing your story, Rachel! I'm a big fan of yours, and I can't wait to see the other stories you plan to share.  :)

If you want to find Rachel and her art, here's how!


YouTube channel: http://www.youtube.com/humablog
Tumblr: http://www.thehumablog.com/
Twitter: http://www.twitter.com/rachellynnae
Portfolio site: http://www.baroquecollegestudent.com/


Thursday, July 21, 2011

DSMA Live With IDF, And A Swim.

There are a couple of things going on today in the world o' diabetes that I think you should know about.

I got this tweet (http://twitter.com/#!/Animas_swim/status/93760144227315713)
yesterday from someone named "Animas_swim", that was asking me to RT something about "diabetic patients swimming the English channel". They had sent it as a reply to something I said earlier that day (with no correlation), so I assumed it to be spam and initially ignored it.

Whoops.

At least, I think it was a "whoops" on my part - because now that I've looked into it more, I think it's totally legit. And I think it's an Animas-sponsored swim team, and it's happening right now, and they're raising money for JDRF. Go take a look at their Facebook page for more info. (http://www.facebook.com/pages/The-Animas-UKIreland-Relay-Channel-Swim-Event-July-2011/201679589853792)

And read this press release about the event: http://www.prnewswire.com/news-releases/people-with-diabetes-endure-swim-across-english-channel-to-raise-money-for-jdrf-125936218.html

(Sidenote: the same problem I was having yesterday with Blogger, where I couldn't un-center that paragraph? Yeah, my whole toolbar is gone, so all I can do is type. No bold, italics, linking, font size changes, anything. What the french, toast?)

And secondly, there's a really cool chance to hear directly from Professor Jean Claude Mbanya, the President of the International Diabetes Federation (I wrote a post about it here earlier this month: http://www.textingmypancreas.com/2011/07/outrage.html), and even ask him a question of your own, as he'll be tonight's guest on DSMA Live! Use this link (http://www.blogtalkradio.com/diabetessocmed/2011/07/22/dsma-live) to tune in this evening, starting at 9 pm Eastern Time.

Professor Mbanya and the DSMA Live hosts (Cherise, George and Scott) will be discussing the "O is for Outrage" campaign, Life for a Child, and Act on Diabetes Now - all intiatives of the IDF to help raise global awareness of diabetes and the worldwide need for access to medication.

So that's it! And if I could have included pictures in this post (also not an option without my toolbar), this might not have been such a dry read. We could have had images of swimming penguins or something. Sorry dudes!

Wednesday, July 20, 2011

Arm Site: Check.

I know this is nothing new.

I know that many, many, many other people do this, and have done this before me.

I know that it's actually not that scary. But, as most new things in life first appear, it sure seemed scary.

Finally, I got up the nerve last night to try a Dexcom sensor on my arm!

Awkward bathroom mirror photography!

Seeing so many CGM arm sites at CWD/FFL two weeks ago had me thinking that yeah, I could probably at least try it. Because I'm a visual person who needed to see photographic evidence first, I googled "Dexcom arm site", and Kerri's post from almost exactly three years ago, along with a helpful photo, showed at the top of the list. (P.S. I have no idea why this paragraph decided to center itself, and I can't seem to fix it at the moment. Oh, Blogger. You fickle beast. /digression)

Aaron was home, but I wanted to see if I could manage it on my own. "Could you just hang around for the next couple minutes, in case I need to you to unhinge this thing from me?"

"Of course."

And all went smoothly. I wiped down the area with an Skin Prep pad (probably unnecessary, but old habits die hard), waved it dry, and planned my attack.

And, really? Not as difficult as my mind had made it out to be.

Out of all of the steps, that last tab you have to twist off was the most troublesome. (I had to have Aaron try after I failed to dislodge it, and he almost yanked the whole sensor clean off!) You know, this little thing:



As for accuracy, or how it may interfere with sleeves, door frames, puppy paws and the like - that remains to be seen. But I do know that I can check one more thing off of my "To Try" list, and that makes me feel good.

Tuesday, July 19, 2011

CWD FFL: Moments.

image credit: Sara
One thing that was said many times throughout the week that was Friends For Life was that the organizers hoped to help "create moments" for all of us. Moments that we would remember, cherish, laugh about. Moments that likely would never happen, if not for the wonderful group that conference brings together.

Moments that can last us for the next twelve months, until we can do this all over again.

Moments like that one time I was washing my hands in the bathroom at the convention center, and the adorable little blonde girl at the sink next to me gave a glance my way. Seeing the green bracelet on my wrist that matched hers, she grinned and said to me, "You have diabetes TOO?", to which I replied, "Yep! Just like you." "Cool." Yeah, it kind of is, isn't it? (I ran into her and her family a few more times that week, so I gave her my email address in case she ever wanted to write me. "My mom won't let me have a Facebook yet." "GOOD - she's a smart lady.")

Moments like seeing my horde of FWDs (friends with diabetes!) at D-Coaster Day for the very first time. I found the group as they were finishing their ice cream (yes, I said ice cream) and gave everyone a huge hug. Because my Dexcom graph was doing an impersonation of the downhill portion of a ski jump, I opted for ice cream as well, and went to stand in line. Seconds later, after having just "met", I found Jacquie at my side. "I thought I'd come stand with you." Aww.

And speaking of D-Coaster Day, there was also that moment when Sara and I held down a park bench together outside of the Space Mountain ride, and tried to talk each other out of hurling. We wondered if the "riding while low" thing was what did it in for Sara. We also noticed that the gentleman on the bench next to Sara couldn't quite keep his attention away from us, but not in a creepy way - just in a, "I'd like to jump in on this conversation but can't find the right time" way. Turns out he was a paramedic, and thought we might need the crackers in his backpack. Again, aww.

Moments like this:

Heather: knitting. Becca: making herself comfortable.
Moments where doing a blood test felt like this normal thing that everyone has to do, rather than this annoying thing that only I have to do.

Waking up one morning to Sara telling me: "I heard your Dexcom going off, but it was the high alarm, so I just let you sleep. I figured you'd value the sleep more than the correction bolus." She knows me well, folks. (It was also funny when she added, "And then I thought about just bolusing for you - because your pump would be able to figure out your correction - but I just let it go", and I replied with, "Thanks anyway, Mom.")

Moments like the one where I realized that I had the best roommates! (Heather, I still feel super bad about Sara and I waking you up nearly every night, well past midnight, when we rolled in. Also, to Becca: I'm sorry for making you bark that first night, when I tried to be all quiet about my entrance. And thanks for being so mellow the rest of the week!)

The "First Timers" reception on Wednesday morning, where event organizers gave us some tips for the week, and conducted a little bit of an ice breaker. We were asked to leave our tables and go sit where we would if the room were a giant map of the U.S. - so, being a Nebraskan, I sat right in the middle. And even though it appeared that I was the only Nebraska native in attendance (at least, as a First Timer), my fellow Midwesterners from Kansas, Iowa, and Colorado joined me at my table. (I think it may be impossible, either emotionally or physically, to feel "alone" at this conference. And that's a great, great thing.)

Moments like that one in the pool, where my prominently-displayed Ping grabbed the attention of a young family whose son was wearing the same insulin pump.

The first time walking into the huge exhibit hall, and thinking (as I tried to not be cynical at about the "business" side of it), "This is all here... for me. Kinda."  To have a ginormous room full of people who totally get what your day-to-day needs are is something kind of special. The free swag was also special.

Speaking of free swag, I got around to having that moment that I mentioned several months back - I got to try an automatic infusion set! (I did, however, need some help with it, so thanks for the assists, Heather and Brian!) I talked to an Animas rep at the hall, and told her that I'd never tried their infusion sets before - and she hooked me up with one each of the Inset and Inset 30 to try. When it came time to do my set change on Saturday, I gave the Inset 30 a go - no better time than when you're surrounded by PWDs, right? Heather helped me dislodge the thing, and as I went to finish reloading my pump, I realized that the Animas rep hadn't given me any tubing. Which would render the set useless. Except that Brian saved the day by seeing my tweet and trotting over to our room to lend me some of his, all within a couple of minutes. (Twitter - gotta love it.)

Moments like the one where I realized that Courtney seems to spontaneously dance as often as the rest of us blink.

It was super cool to meet people like Tom from DRI, Andy and Gary from JDRF, Joe from Team Type 1, and all of those DOC people who normally just live in my computer. (I'd also like to say that all of those people were just as awesome as they appear to be online. Diabetes picks the best people?)

Moments like our last night there, spent at Downtown Disney, where the medical director of Roche Diabetes Care asked my opinion of a Tinkerbell statute he was considering for his daughter. (A third time - aww.)

The fact that the cryfest at the Farewell Breakfast was tipped off by yours truly. (The "tears up too easily" part of my Twitter bio isn't an exaggeration.)

And that moment, on one of our last nights there, when there were around 22 of us sitting at the same shoved-together assortment of tables. Scott Johnson was sitting next to me, and we were both just listening. Being present. He smiled at me and said, "Just look at this. Take it all in. Isn't this awesome?"

We both shook our heads and laughed a little, at just how true that was.

image credit: I'm not sure!



Friday, July 15, 2011

Moving Day.

It's been exactly one month since the launch date of the You Can Do This Project, so I thought now might be a good time to announce that it has a new home!

You can now find the project at http://www.youcandothisproject.com/. Go take a peak!

I'll be adding and readjusting content over the coming days, but it's a start. The link list will remain on this site, under the "You Can Do This Project" tab, until further notice (due to technical difficulties). If you've got any feedback for me, or if something doesn't work right - please let me know!

The current tab on this site will, from now on, just house the link list - and I've included a note there, to let folks know about the new address. I have moved all of the other content to http://www.youcandothisproject.com/.

Thanks to everyone who has made a video, written a blog post, done a podcast, left a comment, mentioned YCDT to someone else, or has in any other way supported and participated in the project. You all are what makes this initiative so powerful.

* * * * *

This week's Hope Paige Medical giveaway winner is...

Jasmine!

Here's her comment:

Jasmine said...

I still want to contribute a video....although my available technology to do so is quite limited. Still, I've loved being a viewer, hearing everyone's stories and learning from their experiences.

July 14, 2011 8:32 AM

Congratulations, Jasmine! Please send me an email at textingmypancreas (at) gmail (dot) com with your full name, phone number and the email address you'd like Hope Paige to contact you at. I will pass your information on to Hope Paige Medical, so that you can pick out what ID you'd like, and how to customize it!

Thursday, July 14, 2011

Guest Post: Thank You.

First, today is the third of six giveaways for the You Can Do This community, from Hope Paige Medical! In order to enter today's giveaway, you must leave a comment on the You Can Do This Project page that is timestamped with today's date. This week's winner will be announced tomorrow!

Second, I have a little announcement regarding the You Can Do This Project, but I'm saving it until tomorrow - which will mark one month since the project launched. (Woo!)

And third, I'll be sharing more thoughts on the Children With Diabetes Friends For Life conference next week - I still haven't covered most of what I want to share. Soooo much to share.

Finally, today's post...

My friend and fellow diabetes advocate Victoria sent me this post a few days ago, and it's my honor and pleasure to share it with you all today. Victoria and her community were hit with very severe tornado damage back in April, and she was instrumental in helping to secure supplies for those with diabetes who were affected by the storms. She credits our diabetes online community in helping her meet those needs in such a quick and well-equipped way, and wanted to extend her thanks here.

Take it away, Victoria!

* * * * *

On Wednesday, April 27, so many lives were changed forever. In that one day, multiple tornadoes trekked across my state for hundreds of miles. The storms uprooted trees, demolished homes and destroyed entire towns. When sunlight emerged on Thursday, more than 240 lives were viciously taken in the storms’ wrath. As a print journalist, I knew early the devastation left behind by the storms.

I was immediately thrust into the epicenter of the storm’s damage. Along with my colleagues, we reported unfathomable news. Eight people in my county died and hundreds of homes and lives were destroyed. We watched as our community banded together to rescue those in need. We watched as strangers cut down trees, sorted through wind-scattered belongings and helped search for survivors.

Within hours of the storms, I was sent to the local Emergency Management Agency. I wanted to help with rescue efforts, but that wasn’t my job. So instead, I reported stories of sadness and loss speckled with the occasional goodness of others. After meeting a doctor with the local medical reserve corps, I realized there was a need I could meet.

The local medical clinic wasn’t equipped with enough diabetic supplies. What was available was expired. I knew that was something I could change. I went home and I grabbed every old meter I could find. (Sadly, I had some pretty ancient devices). I grabbed all the unopened strips I could spare, and I filled a bag with lancets, alcohol swabs and packaged syringes. 

Once I arrived at the makeshift clinic, a nurse said they had a need for Novalog insulin. I made a call, and within the day, a brand new bottle of Novalog arrived at the clinic. I started handing out my cell phone number to anyone with a diabetes or medical connection. I passed it along to fire officials to police officers and even to complete strangers. I called my local JDRF and ADA offices, and they immediately jumped on board. I went home after work and started writing. I wrote about the devastation and the sadness. I wrote about the heartbreak and the loss. And I wrote about how so many volunteers turned out to help, but there was a major need not being met through diabetes supplies. So I asked a simple question: if you have unopened, unexpired supplies that could be used, could you send them to Alabama?

Kim’s package arrived first, just two days after the storms. She enclosed a note detailing the supplies, and the last line item said “And lots of DOC love.” I don’t think I stopped crying for about a week. Every day I returned home, I found piles of boxes outside my door. Then, my friends at JDRF started calling because they were receiving tons of boxes each day as well. Others tweeted and blogged about the need for supplies and before I knew it, my living room looked like a diabetic pharmacy. It was one of the most inspiring things I’ve ever seen in my life.

I’m still overwhelmed at the outpouring of love and support the DOC showed my community during those days and weeks after the storms. In addition to the damage the storms left behind, it also killed all power throughout the county for six days. No refrigeration, no lights, no gas, no pharmacies, no nothing. The supplies were literally, a life-saver.

I’m still getting emails and phone calls from people in the DOC! Because of the generosity of this community, we were able to send supplies to 12 counties in Alabama – 12! We were able to mail supplies to Oklahoma City and to Joplin, Mo. Now, we’re helping uninsured diabetics with the leftover supplies. I still feel a tear each time I think about it.

I share this story to say thank you. This happened because of you! It was the DOC! This community may be full of jokes about bacon and cheese. We may have an unhealthy affinity for cupcakes and pick an imaginary animal as our mascot – but we are very much a force to be reckoned with.

We speak at roundtable discussions to help share a personal side of diabetes. We march Capitol Hill so people know how loud our voice is. We advocate from all corners of the earth and we educate people on the different types of diabetes. We can even flood your inbox to teach you insulin-dependent diabetes is not an “extreme” form of diabetes. We participate in clinical trials, we blog about research and technology. Mostly, we share with the world that we can do anything you can do, we just need a few extra bionic parts.

We are an eclectic group of people from all walks of life. But we have one voice and after April 27, it was heard across Alabama loud and clear! I’m still working on individual thank you notes, but this is the best way I could think of to send a loud and proud THANK YOU!

Stop what you’re doing, pat yourself on the back and know you did something good. Know you saved someone’s life and know you’re still helping others in need! I have never been so proud to be affiliated with such an incredible group of people – and by all intents and purposes, complete strangers. I don’t care what anyone says or how crazy it makes me sound, but I love you all! You are my family, and you are an incredible and beautiful group of people.

And I really do love you like bacon.

* * * * *

You can find Victoria blogging about her life with diabetes at http://www.victoriacumbow.com/, and on Twitter at @victoriacumbow.


Wednesday, July 13, 2011

"You Can Do This": Jay Hewitt.

One of the many cool things about the Children With Diabetes Friends For Life conference is the celebri-Ds (celebrities with diabetes) they bring in to interact with attendees. At this year's conference, we had the chance to meet people like Crystal Bowersox, Kendall Simmons, Sam Talbot, Team Type 1, and Jay Hewitt.

Jay gave the keynote speech on Friday afternoon, which closed out the official activities of this year's conference. For those not familiar with him, he is an elite Ironman Triathlete and three-time member of the U.S. National Team, who also happens to have type 1 diabetes. That means that during one race, he's swimming for 2.4 miles, biking for 112 miles, and running a full 26.2 mile marathon, all while managing diabetes.

Whoa. That makes my half-marathon last year look like a nap.

Hearing him speak about the obstacles, struggles, and triumphs of racing Ironman triathlons with diabetes was inspiring. His competitive attitude extends beyond athletics to how he lives his life with diabetes, too - "Diabetes is my motivation; it drives me to train and race for hours, endure the pain, all to send a message to this disease that 'you're messing with the wrong guy!'" (quote from the CWD FFL website)

Sara and I walked by the "meet and greet" area after his speech, and she turned to me: "Are you going to go ask him to do a You Can Do This video?" I stammered, "Oh! Um... but I don't have..."

Sara finished my sentence for me. "... a camera? I have my Flip with me. Seriously, let's go ask him. Right now."

That prompt was exactly what I needed to hear (thank you, Sara!) to force me to get over my sudden timidness and just ASK already. Jay was so kind and gracious, and asked us to wait around until he had the chance to meet everyone who was already standing in line - which we gladly did.

I don't think I've ever strung together words as quickly as I did when I was trying to explain the You Can Do This Project to him, but what I said must have made sense, because I now get to present you with this!




Thank you so much for lending your voice to the You Can Do This Project, Jay!

Tuesday, July 12, 2011

CWD FFL - That Feeling.

Every night felt like one of those great slumber parties you have when you're a kid, where you want to stay up as late as you possibly can and giggle until your sides hurt.

You enjoyed each moment as best you could, but never quite fully - because you were ever cognizant of how fleeting this time together would be.

photo credit: Jacquie

You hugged and cried and laughed with family, who were technically strangers. Our blood may not have been related, but our pancreases (pancrei?) belonged to the same club.

photo credit: Sara

We all wore the Green Wristband of Significance. We swam with our pumps and sensors and IV tape and scar tissue and bruises out for all the world to see. We did synchronized swimming. (Okay, we just did the Cupid Shuffle while in the pool - but that counts!)

photo credit: Sara

The Diet Coke was, for the one-time price of $14.90, limitless. (And seemed to cause some dehydration - but that's another story.)

There were free cupcakes at one point.

High and low blood sugars abounded. Emergency supplies were exchanged. Humalog pens were lent out. The Florida humidity meant a sweaty early morning walk to the convention center each day. Rollercoasters made us queasy.

Every day was so imperfectly perfect.

original photo credit: Martin
How do you sum up something like that? How do you quantify it? How do you explain to anyone without diabetes what that feels like?

And how cliché is it if I say that I really do feel like I have Friends For Life?

When I signed up for the Children With Diabetes Friends For Life conference, I did so with a tiny thought in the back of my mind: With a name like that, I hope there's a place for an adult like me. This was my first CWD conference, and even though I knew adults with type 1 who had gone before (and enthusiastically recommended it), I was cautious about getting too excited.

2011 was the first year that CWD had an "adults with type 1" specific set of sessions, and so I didn't set much in the way of expectations of what those sessions would be. Truthfully, my main reason in wanting to go was to get to hang out with that great assembly of people for 5-ish days.

I set my expectations way, way too low.

I thought that some sessions had good value, like the "Finding Support Through Social Media" session with Scott and Kerri - it had a casual feel to it, and those of us who were proficient in the subject matter could lend advice and ideas to those who were new. Kerri's session on "Diabetes and Pregnancy" also was a favorite - except for those awkward moments when a man would try to walk into the session halfway through (were we so quiet, they thought the room was empty, maybe?).

I thought that some sessions were pointless, like the Novo Nordisk sponsored "Grown-ups with type 1" hour. The facilitator didn't seem to have any working knowledge of life with diabetes, and it showed. Painfully. ("Do you try to avoid lows?" "Raise your hand if your last A1C was under 7!" It was totally uncomfortable, and didn't really seem to accomplish much beyond providing some market research findings for the pharma company sponsoring it.)

The session that had the most punch for me was the "Avoiding and Overcoming Diabetes Burnout" session with Dr. Jill Weissberg-Benchell. (She is both a pediatric psychologist and a CDE, and "works regularly with children and teens and their families to facilitate coping with diabetes and other chronic conditions". And, really, I've never met a person who so totally "got it" without "having it" themselves. She is a rockstar.) What started as a guided discussion on managing the day-to-day of diabetes turned into one big group therapy session. Fifteen of so of us adults with type 1 sat in a circle, finishing each other's sentences and passing each other the Kleenex. It was... beautiful.

I know that won't sound like a good time to some, but it was exactly the honest, gritty conversation I needed to have. And with just the kind of people I needed to have it with.

That feeling - the one where you feel understood in some unspoken way; where you feel like you are "among your kind"; where you fear your heart might explode from the joy it's holding? It was one of the best gifts FFL could have given me.

* * * * *

Disclosure-y stuff: The CWD people did not ask me to write about the FFL conference, nor did they provide any compensation for my attendance. All expenses associated with this trip were out of my own pocket, and as always, all opinions are my own.

Monday, July 11, 2011

CWD FFL - Getting Back.

Well, hi there!

The absence of free wifi, a jam packed schedule at the Children With Diabetes Friends For Life conference in Orlando, FL, and my phone's refusal to publish a blog post (not really so smart, are you, Mister Phone?) didn't allow for the intermittent blogging opportunities I'd hoped for last week.

And yet, now that I'm home (but nowhere near unpacked) and have a bit of time, I don't know where to start.

There's so much I want to tell you - about the conference; the "adults with type 1" sessions; D-Coaster Day; the people I met; the fun I had. I want to talk about why I think next year can be even more great. I want to find a time machine and bring you all back with me so we can all live that week again.

But for now, I've got this.

One room, three PWDs, three Dexcoms, three insulin pumps,
and one Super Dog.  The night-long chorus of pump and CGM alarms,
combined with canine sleepy noises, made for some ill-rested nights -
and I wouldn't have wanted it any other way. (Those BG readings, however -
those I would have been alright with changing.)
Roomies!

The Team Type 1 crew at FFL 2011. And also, me.

The irony of attending a diabetes conference - ridiculous blood sugars.

Tuesday, July 5, 2011

Guest Post: Cartwheels and Wall Corners.

This week, I'll be attending the Children With Diabetes Friends For Life conference for the first time in Orlando, Florida. I don't have the usual line-up of guest posts while I'm away, so look for some eratic photos and thoughts being posted here throughout the week - as well as plentiful updates on Twitter. :)  


Today's post comes from my friend and fellow diabetes advocate, Michael Hoskins, who writes at The Diabetic's Corner Booth. Mike shares a story of a spontaneous "vacation" of his own - from insulin pumping. 

* * * * *


I sat at my desk, reading court rulings and plotting how I'd write a story about that day's legal happenings.

But something wasn't right. That thirst swam around in my mouth, that fruity taste present. A headache was clouding any thought about work.

Was I high? A blood test revealed a 398 mg/dL.

"What the... Fructose?!?! You a-hole," I said to my meter.

Was it my pump site? Tubing? Something else - had I eaten and not bolused earlier, or missed something else?

Hmm. The only thing that came to mind was that I was a couple days past when I needed to change out my site, so maybe THAT was the culprit.

I keyed in a correction bolus and waited for the insulin to start working its way into the set on my left arm. A half a unit in, the pump started vibrating like a whiny school child.

"No Delivery."

I responded: "You suck."

Trying again, the same result happened.

Unplugging tubing from site, I try a third time. This time, the bolus streams through the tubing without a problem.

"Great. Guess it's time to change up sites, here at the office..."

That's when I look for my spare infusion set in my briefcase and find it's not there. Apparently, I used the spare without replacing it. So, I'm stuck with a couple emergency syringes and my bottle of Humalog to last through the afternoon at the office. Skipping lunch, this won't be too much a problem.

But then comes the happy realization: I'm going to be FREE from my pump for the afternoon!!!!

A smile comes across my face, and I tweet this. Several in the DOC respond with enthusiasm, knowing from experience the awesomeness of being free for even a little bit.

I contemplate standing up at my desk, holding my arms straight up like I've just won a championship, and cheering for my new found freedom. But I thought twice, thinking my co-workers may not get my excitement.

They just might not understand the freedom from being unconnected, or an explanation such as "I'm High" or that I need to "Shoot Up." No, that might actually cause some more issues and uncomfortable conversations with the boss and management.

My mind turns to cartwheels around the office. Or maybe skipping around some wall corners that might otherwise present some set-pulling danger. Or maybe, I'll try darting around some doorknobs and laughing at them as they are foiled from latching onto my tubing.

No. Hesitation wins out again.

Instead, I tweeted from my Blackberry a few times and let it go at that. The DOC understood. They got it. And were just as enthused as I was.

Then, I just went about my daily work duties that afternoon, coming down thanks to some manual bolusing via syringe. Once at home about dinner-time, I put in a new set in my leg and was back to the pumping life.

It was only for a few hours, but those moments of freedom were good ones. I could have done cartwheels and not had to worry about doorknobs or wall corners. And just being in that position, even briefly, was enough for me.


* * * * *

Thanks again to you, Mike!



Monday, July 4, 2011

Happy Indepawdence Day.



Red chewing star, while fur, blue collar. (Except you can't see it in this shot...)

Billy is so patriotic!

Friday, July 1, 2011

Outrage.



It's a little bit amazing how one ripple can turn into a giant wave, and how many times that multiplying effect can happen. (In the diabetes online community, the answer to that question seems to be "often".)

Jean Claude Mbanya, president of the International Diabetes Federation, spoke at last week's Roche Social Media Summit. While I may not have heard him speak in person, thanks to the Diabetes Hands Foundation's UStream channel, I did get to watch the video.

And so should you - seriously, go watch it.

It wasn't just the passion with which Mr. Mbanya spoke that impressed me - but boy, does he have a bunch of it. What moved me was what he had to say, his outrage at the current state of global accessibility to medicine, and the determination he has to change that.

And his outrage became my outrage.

To (probably poorly) paraphrase Mr. Mbanya, it's ridiculous that 90 years after insulin was discovered, people are still dying from diabetes due to lack of access to it. As much as I may vent, whine, complain, whatever about life with diabetes, there's a point to be made: I am, indeed, LIVING with it. I am able to obtain insulin when I need it, and I'm able to keep it at the right temperature. I have access to doctors; to pharmacies; to knowledge and education. Not everyone in the world with diabetes has access to these things.



So what can we do about it?

One way is to grab the attention of world leaders; to make non-communicable disease prevention and treatment a priority. In that spirit, the International Diabetes Federation has recently launched an initiative called "O is for Outrage", which you can check out here. Here's a summary of what they're trying to accomplish, taken from the IDF's website:
We are asking the US President to show the world that he is committed to the prevention and control of non-communicable diseases (NCDs). This topic is the subject of the UN's second summit on global health issues [on September 19th]. Having President Obama attend will inspire other leaders to take this issue seriously because "we do not want the world to sleepwalk into a sick future that is avoidable" (Ann Keeling, IDF CEO).
The IDF is offering to mail a postcard to President Obama on your behalf, to ask him to attend this summit in September. You can choose from the wording suggestions they have there (most of which, honestly, I wasn't very comfortable with), or write your own card.

Let your voice be heard - that diabetes is worth paying attention to. That WE are worth paying attention to.

* * * * *

And now, for this week's You Can Do This Project giveaway
(sponsored by Hope Paige Medical) winner...

drumroll please...

Aliza Chana!

Congratulations, Aliza! Please send an email to me (at textingmypancreas@gmail.com) with your phone number and the email you'd like Hope Paige Medical to use when they contact you
about your free medical ID! Thanks to everyone for entering the contest this week -
we'll do this again on July 14th/15th!