Wednesday, July 27, 2011

27.07.1921

90 years ago today two Canadian scientists, Frederick Banting and Charles Best, successfully isolated insulin, a hormone produced by the pancreas.

If my kid had been born a hundred years ago, her diabetes diagnosis would have meant an automatic death sentence.

I am so grateful that she was born in this time and place.

I was profoundly moved by an interview I heard last week that was conducted with Professor Jean Claude Mbanya, President of the International Diabetes Federation (IDF). I've been trying to find the words to make a post about some insights he shared with those of us participating in the live chat, but have been unable to do so. Luckily, there are others in the DOC who make good words, so please allow me to link to Martin's excellent post entitled Imagine. If you can't be arsed to click on the link, I've reproduced an excerpt below:

Something that [Professor Mbanya said that] really jumped out at me was what he shared about the stigma of diabetes, especially in less fortunate countries where oppression, starvation, corruption, overpopulation, and poverty reign.

Professor Mbanya shared with us the story of a man whom he met in a hospital that had four children, one of which was a daughter who had type 1 diabetes. Despite what help he could get from the hospital, the man was always sad and never smiled. One day Professor Mbanya went away on a trip, and when he returned and happen to run into the man, he was happy, and had a smile on his face. Professor Mbanya asked him, "Why are you so happy?" The man answered that his daughter with type 1 diabetes had died. Professor Mbanya, unable to understand why the death of a child would bring a smile to the father's face, asked, "Then why are you smiling?" The man answered, "Professor, it was better that my daughter should die, so that the rest of the family can live, for when she was alive we couldn't eat, the other children had to drop out of school, and now I have changed and put on weight because we are able to eat."

Imagine.

Among some tribal people in the undeveloped world, diabetes is not viewed as a medical condition, or a sickness, or even a disease. It is viewed as a curse. Professor Mbanya explained to us that in those cultures, the family of a child with diabetes is viewed as having the disease as much as the child, where parents take their children and commit suicide or infanticide because of the profound negative stigma of diabetes.

Imagine.

In 1979, Chinese leader Deng Xiaoping enacted the One Child Law for urban areas of China in an effort to control population. The basic premise of the law states that couples are limited to only one child per family. However, if that one child develops type 1 diabetes, then an exemption is allowed so that the parents may essentially try again, because the expectation is that the child with diabetes will die.

Imagine.

Professor Mbanya said it, and I couldn't agree with him more: "No child should die of diabetes. All children should have adequate access to insulin, monitors, supplies, and education needed to have a happy and quality life."

Imagine.

+ + +


Friends, if you're affected at all by these small snapshots into what life can be like for those not lucky enough to have been born in the same time and place as we were, please take the time to visit the links below to learn more about how you can help. (This section was also nicked from Martin's post. Thanks for doing the heavy lifting, dude.)
* O is for Outrage
The topic of the United Nation's 2nd summit on global health issues is non-communicable diseases (NCDs), of which diabetes is one. Create a postcard right now to send to United States President Barack Obama, and ask him to represent us at the UN Summit on September 19-20, 2011. The IDF is taking care of all of the shipping costs. (P.S. - I don't care what political affiliation you are or whether or not you approve of President Obama. This isn't political. This is necessary.)

* I Agree
Do this now. Just click the "I Agree" link above. Just by doing that, you are telling the IDF, the UN, and the world that you support essential care for people with diabetes. People should not have to choose between starvation and living life with diabetes. Not anywhere.

* Life For A Child
Saving the lives of children in the developing world. As Professor Mbanya said in his time with us on DSMA Life, "No child should die from diabetes."

* World Diabetes Day
November 14 is World Diabetes Day. Wear blue on this day, attend or host an event, and increase awareness of diabetes worldwide.

+ + +

where you live should not decide
whether you live or whether you die


+ + +


look out Scott and Colin, she's still got both of her FFL wristbands on.

Friday, July 15, 2011

kin folks

John and I had an awesome time chatting with the Ninjabetic in the expo hall at FFL last week. It was right before he was about to get his photo taken with his "cousin" Kendall Simmons. Talk turned to all the other Simmonses that could be his kinfolk and an idea was born. Unfortch, my photomanip skillz are basically nonexistent, but hopefully you can still enjoy this quick and dirty offering. (that's what she said)

Simmons Family Reunion 2011
(Click to embiggen. It looks better/worse that way.)

Monday, July 11, 2011

cwd ffl 2011

This time last week, we had just arrived in Florida for the Children With Diabetes - Friends For Life conference. We were "First Timers". We got a special ribbon attached to our name badges announcing our newbie-ness. That way, if we ever looked lost or confused, one of the old timers could reach out to us and see if we needed a little help. Also, it helped us identify other families who might be in the same boat as us. From our first moments at registration on Wednesday, down to the goodbye breakfast on Sunday, we were lucky enough to be in the company of some of the most generous people I've ever met.

Last year, when I was considering making this our big family summer vacation, I sent a comment to Bennet at YDMV, saying I'd heard that the conference is like a big diabetes camp for the whole family. His reply was: FFL is like diabetes camp for kids, parents and adults with type 1 on steroids, bitten by the spider that got Peter Parker in an Iron Man's suit. How could I resist after a claim as bold as that? They should print that on the brochures!

Since my brain is still scrambled from all the awesome, this recap will take the form of bullet points, because that's all I can manage at the moment. Enjoy!

+ At registration, we were all issued wristbands. People with diabetes got green ones, everyone else got orange ones. (There was also a yellow one for peeps with celiac, and even a separate buffet area for them, to avoid cross-contamination. Awesome.) The type 1 "celebrity" guests also wore the green bracelets, like American Idoler Crystal Bowersox, Ironmanner Jay Hewitt, Footballer Kendall Simmons, and Top Cheffer Sam Talbot. I can't explain why, but seeing Crystal up there with her bracelet, saying "You can be anything you want to be. You can work a camera like that dude, or work behind a soundboard like that person, or you can write songs like me, or whatever it is you want to do!", made me a little teary. Good thing there was a box of tissues at each table.

+ Geeking out when I saw some of my fave d-bloggers in the flesh.

+ L recognized Kerri before I did.

+ Kerri introduced us to Scott; luckily he's a hugger like me.

+ When I first saw Jacquie, I wasn't sure if it was her or not, since she did not have shafts of golden light emanating from behind her head as she stood in front of the soda machine, but as soon as she smiled I knew it was her. Me: "I love your blog!" Her: "I love your hair!" Awwww.

+ George is even more awesome in person than on his blog (hard to imagine, I know). Super proud of his family and so so funny.

+ I got to thank Kim in person for starting the "You Can Do This Project" and she was very humble.

+ I was perhaps too enthusiastic giving the excited-wave-in-passing to Lee Ann and Karen, since I'd not even said a proper hello to them. But I was happy to be able to chat with Karen and her husband a bit at the Farewell Breakfast.

+ Finally met Bennet and his wife and told him he pushed me over the edge about coming to FFL and he was like, "in a good way, I hope! I've been known to push people over the edge in the bad way." For sure!

+ Called out to Lorraine as she passed by with her kids, and got to chat briefly with the only other mom blogger I ever saw there, though I'm sure there had to be more. I was happy to have a quick visit, but we'll definitely need to plan to get together for real next time.

+ Martin, Jess and Sara, three new-to-me d-bloggers who always seemed to be having such a great time whenever I saw them. In fact, one time John and I were waiting in the hallway for the next session to begin, and I heard a loud rumbling coming from behind me. I thought it might be a group of teenagers but when I turned to look, I realized it was...The Bloggers.

+ Speaking of Martin, John told me a great story of how he brought sanity back to a session that was rife with tension by way of his quiet confidence. Well played, sir. Well played.

+ I considered wrenching the green wristband from my kid's arm so I could get into the Sam Talbot panel, which was exclusively for adults with type 1 wah wah wahhhh. I look forward to Jacquie's forthcoming blog post about her experience. Use as many adjectives as you deem necessary, mkay?

+ By the second day, L had made fast friends with a few girls in her age group and barely checked in with us between sessions. She spent lunch and breaks with her new posse of pals and begged us to keep at least 200 feet of distance from the room where the tween social took place on Friday night. Me: "Can I hang out in the hallway outside of the room?" L: "No! Someone might see you!" Me: "What about around the corner?" L: "No! I don't want you anywhere near there!" Parental Restraining Order in full effect. I was not offended in the least. I was happy she had found her people. Walking home from the party she said to John, "Best. Dance. Ever." Rock.

+ GACs (Guest Assistance Cards) are basically, like, the best thing ever. Between the hours of 8am and 12 midnight on Tuesday, July 5th, we went to Magic Kingdom, Hollywood Studios, and Epcot, and rode on everything we wanted to, some of them more than once. A long time ago, shortly after L was diagnosed, we were reading a blog where a kid was asked what the best thing about diabetes was, and they answered "the special pass we get to use at Disneyland!" and I have to say, I couldn't agree more. Besides the friends we've made due to diabetes, the GAC is for sure the best thing about this whole diabetski bisnatch.

+ The Social Media session was really great, (aside from the moment when I misguidedly tried to explain what a hashtag was to one of the bloggers who was asking for a definition in case anyone else in the room was confused), and it produced one of my favorite sentiments from the weekend. This is not an exact quote, so please forgive me for butchering Kerri's original poetry: If having diabetes makes you feel like a freak, when you discover others on the internet going through the same things as you, it makes you feel less like a freak show, more like a traveling circus. Scott put it another way in his answer to a gentleman who wondered what the "purpose" of "social" "media" was: You know how amazing it feels to be here at FFL and sit across the table from someone who gets it? That's what the DOC is like, except it's not just for one week a year. And on the internet, there's always someone awake in the middle of the night if you need to talk.

+ "Air" "Quotes" aka "Bunny" "Ears" = The Ninjabetic's gang sign of choice. Also, his dad is not Richard Simmons, so don't even go there.

+ I should have snapped a photo of Kerri in front of the twitter wall displaying her recent #FFL11 tweet and then posted it to twitter, but I fear the resulting meta-meta-madness would have caused the internet to collapse into itself.

+ Crystal Bowersox is so freaking rad. She did a photo op session on Thursday, and right before it was our turn to get our pic snapped, I heard her tell her assistant that she needed something to eat, and the assistant was like, "Do you need some sugar?" And Crystal was like, "No, I'm not low, it's just normal people hungry." Consider that added to our family lexicon! She was scheduled to perform after the big banquet that night, but she spent most of her time onstage fielding questions from the kids gathered around the front of the stage.

Q: Did anyone ever tell you you couldn’t do something because of your diabetes?
A: Sure, all the time. And I’ve proved all of them wrong. And you can too!

Q: What's the best thing about having diabetes?
A: (long pause) Coming here to play for you guys. And showing you that having diabetes won't stop you from reaching your goals.

Q: How did it feel when Lee DeWyze won American Idol?
A: I tell you what. When they announced his name, I looked up at the ceiling, and all the confetti started coming down. And I picked out one piece, MY piece. And I watched it float down, and I caught it. And I still have it to this day. And I feel like I won too.

Q: You OWNED American Idol
A: THANK YOU!


+ They were giving out free sno-cones in the expo center and when I asked if they knew how many carbs were in them they replied: "No carbs! This is a diabetes conference, after all!" I said, "You'd be surprised at the things I've seen served at other diabetes events." Boxes of donuts with no carb info at the JDRF walk, for starters.

+ L played soccer in the sports room on the first night and was thrilled when she discovered after the fact that she had scored two goals on a member of the Chicago Fire. :)

+ Low overnight BGs seemed par for the course here. All the activity and excitement (see above) made overnight basal changes necessary (40% in three hour intervals seemed to do the trick).

+ Where has Joe Solo been all my life? Does he have a blog? I'd like a daily dose of that dude. Does he even exist outside of CWD FFL? Or is he just a magical soul who is apparated when thousands of PWDs get together and think happy thoughts? No, the best part is knowing that he DOES exist outside of FFL. He's out there, doing his Joe Solo thing, day after day.

+ Oliver Double, stand-up comic from the UK. Lanky British dude with charming wife and clever kids, telling jokes about diabetes? Where have YOU been my whole life? He did a bit of stand-up to open the conference, which included reading responses to a poll he posted on the CWD site and the most hilarious answers were from the DOC's own Scott Strange. Sweet sassy molassy it was funny. I would watch an entire show written by Strange and performed by Double. They could call it the Double Strange Traveling Show. I would go to every gig. Maybe I could work the merch stand. When I met Oliver briefly, I told him I liked his opening speech and he laughed when he noticed my badge said I was from Neurotic City. I told him it was the name of my blog and he said "great name for a blog!". WHY THANK YOU OLLIE, MAKE MINE A DOUBLE.

+ We have clearly reached the part of the recap where I devolve into embarrassing admissions and ALLCAPSclamations. Which is typically my cue to wrap things up.

So. Thank you to every person who reached out to this deer-in-the-headlights first timer. Thank you to all the volunteers who donated their time to keep things rolling smoothly. Thank you to all the mentors and staff who showed my kid such a good time that she was compelled to ask if we could come again next year, before this trip was even finished. Thanks to all the bloggers I bum-rushed for being so kind to me, even though it's unlikely you had any clue who I was. Thanks to Crystal Bowersox for calling me "Mama" in her inimitable way. Thanks to John for taking care of L during the 50% of the vacation that I was sick in bed. Thanks to L for sticking it out in the beginning when she thought this whole thing was gonna be sooo booooring. And thank you to the creators of the CWD FFL conference for creating a place that brings the camaraderie and support of the DOC to life in all it's educating, entertaining, inspiring, exhausting, sometimes schmoopy and occasionally messy glory, and allows us to strengthen those bonds face to face, over refillable cups of Diet Coke and coffee and poolside with a pack of other pumpers. My hope for everyone reading this is that you can attend or create a similar gathering yourselves. Peace, love and insulin, maaaan. <3

Thursday, July 7, 2011

better late than never

Prior to any large gathering of internet nerds, it is customary to let those friends that live inside your computer know you will be attending, so as to make plans to at least say a quick hello at some point. I had certainly planned to let all my diapeoples know I'd be attending the Children with Diabetes - Friends for Life conference. But the universe conspired against my ability to do so in a timely fashion.

Over the last couple of weeks I have traveled to 4 states (Massachusetts, Connecticut, Michigan and Tennessee) to see multiple concerts (Glen Hansard x 3, U2 x 2, Eddie Vedder x 1.5, Mark Geary x 1), which rendered me unable to make this blog post in a timely fashion.

So hey! Here I am in FLA! I've already run into some of my fave D bloggers: Kerri, Scott, George, Lee Ann, Jacquie, and Kim. I'm pretty sure none of them had a clue who I actually was, but they were very kind to me anyway. When I introduced myself to Kerri as "Shannon from Neurotic City", she thought I meant that was my actual hometown, and suggested I change my name tag to reflect that. So I did. And when I bum-rushed George and Lee Ann at the buffet by saying "HI, I'M FROM THE INTERNET", they were nice enough to not seem too disturbed by me.

Kerri and Scott led an awesome panel about Social Media, and I am sure there were more bloggers in the room I didn't get a chance to creepily introduce myself to. But there's always the buffet tonight. Bennet, I'm looking at you.

So, if there's anyone else out there reading this who happens to be at the conference right now, drop me an email or a comment if you wanna say hey in person. I think I saw a photo of Caleb on the welcome collage so Lorraine, if you're here and you see this before Sunday, drop me a note! Also, I totally had a D-Tales sighting, when one of Jack's pieces of artwork was used in the keynote speech. Anyone else I might know up in here? HOLLA!