Off the Dial

Welcome to my home for my take on everything diabetes-related. Here is where I try to keep my son’s condition in perspective, and share hopeful and inspiring stories, opinions, and knowledge, as well as our common struggles. Join me to share your wisdom, too. We’re in this together.

Diabetes Connections – DHF

I can’t believe I’m already at Episode 13 of the podcast. To celebrate lucky number 13, I’m excited to direct you to the Diabetes Connections website. You can listen directly to the episodes through that site, but of course, you can still subscribe and listen through iTunes, Google Play, Stitcher, etc. The website will also feature links to sites and topics we talk about about.

This week I’m talking to Melissa Lee, the interim executive director of Diabetes Hands Foundation. Their slogan is: no one with diabetes should ever feel alone. You’ll hear that Melissa did feel alone with her diabetes for a very long time, and how she came to find support.

I’m also speaking to Kelly Kunik about I Wish People Knew That Diabetes…. It started as a hashtag on twitter and is now blossoming into an exciting new campaign. Plus, we are now back to school around here and, while I miss the flexibility and fun of summer, I’m really excited to get back into our routine. I’ll tell you more about why.

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Click on this friendly square to go to the new website!

Listen to the episode and click on  the Helpful Links over at the new site. Thanks!

 

Murphy’s Law

Is there a name for when everything goes wrong with diabetes? Ugh.

Benny is in the middle of practice/tryouts for this baseball season. Today was business as usual, he went to the pool for a little while, enjoying the day of before school with neighborhood friends. He had an ice cream and used his pump to give himself insulin. But, the inset was coming out, then it came out, so the insulin never got in. And his Dexcom came out too. So when we checked him just after the pool as he got dressed for baseball, he was over 400. And he felt it.

We decided to change the inset, guzzle some water and head over the practice. He could sit in the dugout or just play catch until he felt better and his BG went down. But the first inset we tried bounced off his skin. ?? That was new. The second one really stung and immediately we saw blood running up the tube and out of the inset. Seriously? Did I mention he also got smacked in the eye at the pool (by accident, he’s fine)

We needed to gather some strength for a 3rd inset or for a shot. So I let him rest for a few minutes. Thankfully the third inset worked and we got some insuling into him. Unfortunately, he didn’t feel well enough to practice. He did suit up and we headed over to the field, but I could tell it just waasn’t going to happen.

If you read this blog or listen to my podcast, you know I’m a pretty positive person; we try not to let diabetes stop us. But sometimes it stops us cold. It sucks.  This one got to me. I was tearing up all the way home. It’s those small stolen moments that diabetes takes. Small things like this, I mean one practice si’t hte end of the world and the last time we had any inset problems was two hyears ago, so it’s not huge in the scheme of things. But it’s just the crud you have to deal with that shoudl be a second thought for a ten year old who just wants to play ball.

 

Camp and Professor X

Summer is almost over around here. You may have until after Labor day, but our kids go back to class on Monday. Enough time for one last camp story.

Both my kids go away to camp, for almost four weeks, about four hours away from our home. They love it and have been doing it for years. It’s not a diabetes camp and while I worry, we’ve worked hard with the cooperative and fabulous staff to make this a safe and fun experience.

Every year, a few counselors write notes for the kids to open in the car on the way home. This was Benny’s:

When we got home, Benny put this on our fridge (he never puts anything there) and I have a feeling it’s going to stay up for a while. Thank you, Dylan, for making my son feel like a super hero. Managing diabetes is a difficult and relentless task. How nice to have someone notice and let you know you’re doing great.

(just in case… the drawing is of Marvel’s Professor X, played by Patrick Stewart in the X-Men movies. click here for more Marvel fun & info)

 

Diabetes Connections – Sebastien Sasseville

This week’s guest has been called an inspirational endurance athlete. And how. When I was writing up the bio I use to introduce each guest, I realized that his accomplishment of climbing Mt Everest wasn’t even at the top.

I first heard about Sebastien Sasseville during his run across Canada last year. He ran the equivalent of 180 marathons over 9 months to raise awareness for type 1 diabetes. He was diagnosed at the age of 22.  It was a thrill to speak to him and learn more about what motivates him to push himself.

Also this week, if you’re an adult with type 1, the people at the Friends for Life conference have a message for you – they want to know what you’re looking for. What would bring you to Friends for Life?:

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Links:seb2

Sebastien Sasseville  (official site)

Sebastien Sasseville, Outrun Diabetes

Blogs/websites I mentioned:

SixUntilMe

Scott Johnson’s blog

Diabetesmine.com (news & information)

The Perfect D

Do you have feedback for Kerri about adults and Friends For Life? She asks that you contact her over Twitter: @sixuntilme (If you’re not on Twitter, email me here and I’ll get it to Kerri)

 

Diabetes Connections – College Diabetes Network

Going to college is stressful enough for most students. Having diabetes just adds another “challenge,” as we politely say around here.

This week, I talk to Mindy Bartleson from the College Diabetes Network about resources to help students, families and even roommates. In the Community Connection, you’ll hear from a sophomore student-athlete who explains what advice he’d give himself as a freshman. And I share something I wrote about diabetes, numbers and emotions that hit a nerve on Twitter:

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Helpful links:college diabetes network

College Diabetes Network

Mindy’s blog (homepage)

Mindy’s blog (the one with the GlucoWatch)

 

 

Diabetes Connections – Artists & Athletes

Recently, I attended the Children with Diabetes Friends For Life conference where I was thrilled to record interviews with several fascinating people.

Natalie Irish is a gifted artist who one day decided to paint in a unique and remarkable way. She “kisses” the canvas, using her lips to create her art. When you look at most of these portraits, though, you’d never know a brush wasn’t used. Natalie appeared on Conan O’Brien show with her bright pink insulin pump in 2012. Her portrait of Conan still hangs in his show’s green room.

Chase Pelletier is a 19 year old touring car driver who’s already setting records. Diagnosed at age ten, he’s part of the Drive 4 Diabetes program as well as competing in the F2000 open wheel racing series in Canada, and the Pirelli World Challenge Touring Car-A racing series in the U.S. Chase had a driving simulator at the Animas exhibit booth at the conference, which was a big hit with the kids who waited to meet him.

What makes these people with diabetes tick? How did Natalie get the idea to paint that way and how does Chase fit his insulin pump and other diabetes gear into the tiny space touring cars have? These were fun interviews:

 

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Helpful links:

Natalie Irish on Conan O’Brien (video)

Natalie Irish website 

Chase Pelletier Drive 4 Diabetes

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Chase brought his driving simulator to Friends For Life

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The kids helped Natalie create a new piece of art at Friends For Life

 

 

#DSMA – Numbers & Emotions

Every Wednesday at 9pm (Eastern) we talk diabetes on twitter. Using the hashtag #dsma, the great people behind the Diabetes Social Media Advocacy account ask questions and spark a fast-moving conversation. This week was all about numbers.  I was a bit surprised when a response I gave got a pretty big reaction.

Here’s how it looked on Twitter:

Some of the responses:

I wish doctors and health care providers gave us more education about the emotions that diabetes numbers can bring. It’s a real thing. We need to keep talking about it.

(Want to join the next #dsma chat? Learn more here) 

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Diabetes Connections – Safe at School

Time to start thinking about back to school! I know, many districts don’t start until after Labor Day, but throughout much of the country, August means it’s time to head to class. With that in mind, let’s talk about about diabetes and school.

My guest is Crystal Jackson, head of the American Diabetes Association’s Safe at School program. She walks us through legal rights, common challenges and how to form a partnership with your child’s school. Jackson has a grown daughter with type 1 – she’s walked the walk. You’ll also hear from a mom whose child with diabetes attends a charter school. She shares her experiences and gives some good advice for the unexpected. I talk about setting goals that make sense at the elementary school level:

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Helpful links:

American Diabetes Association Safe at School (main page)

ADA Safe at School Webinars 

Need to talk to someone? 1-800-Diabetes (1-800-342-2383)

 

Dream on 3

dreamon3A few weeks ago, I noticed a new account following me on Twitter. @Dream_On_3 says they make  sports dreams come true for Charlotte-area children with chronic illnesses, developmental disabilities, or life-altering conditions. Then I saw this month they made a dream come true for a child with type 1 diabetes and I really wanted to learn more. I got in touch with Shannon Griffin, their communications director:

Stacey: How did you come up with the idea for Dream On 3, what does the name mean?

Shannon Griffin: Our founders, Brandon and Elizabeth Lindsey get this question a lot! In a nutshell, Brandon and his wife felt called to give back. There is a magic in the world of sports that he wanted to bring to life for children with chronic illnesses or special needs. Brandon and Elizabeth are often asked if they have a child with an illness/special need that inspired them to do this, and most are surprised to learn that they don’t.  Dream On 3 comes from the idea of putting our hands in the huddle to say “Dream on 3…1, 2, 3, Dream!”

Stacey: What kinds of experiences are you providing?

Shannon: Each Dream Experience is custom designed for that particular child. Their sports dreams vary- some specific examples: “to meet any yankees player and hit a ball so hard it goes over the fence.” “To attend the opening NY Jets game and meet Eric Decker.” “To be a wide receiver for the Panthers.” Each Dream Experience also has a sendoff. The send off is usually a surprise, and we gather the child’s friends, family, and healthcare givers, at a location such as the child’s favorite restaurant. For example, last year we surprised Dream Kid Alex at her Friday night HS football game by driving a limo onto the field at halftime. Our biggest goal is to show that child that they have their own team/support system pulling for them.

Once a Dream Kid and their family have a Dream Experience, they become part of our DO3 Family. There are several Dream Kids and families that we get together with, celebrate milestones with, and come together for hardships with. What’s cool, is that these families are bonding with each other as well! For example, we went to Dream Kid Nicholas’s (who has autism) birthday party earlier this year and were amazed to find that two other Dream Kids (with autism) and their families were also there!

Last year we started the “Nicholas Thornton Scholarship Fund” in honor of one of our Dream Kids who passed away before his Dream. Nicholas believed that the power of education was the necessary tool to unlock any door. This fund was started a little over a year ago & we have raised $3,000 so far. When our Dream Kids come of age to apply for college, they are also eligible to complete a scholarship application.

Stacey: Why sports?

Shannon: Are you a sports fan or have you ever played on a team? There is just something about the camaraderie and overcoming your obstacles that is powerful. I like to answer this question with a quote from Nelson Mandela- “Sport has the power to change the world,” Mandela said. “It has the power to inspire. It has the power to unite people in a way that little else does. It speaks to youth in a language they understand. Sport can create hope where once there was only despair.”

Stacey: You’ve hooked up with some heavy hitters in Charlotte. Why are these partnerships important to you?

Shannon: With the idea of the community and local businesses coming together to make these Dreams come true, our partnerships are everything! Levine Childrens, The Arc of NC, Novant Hemby Children’s Hospital, DDR, inc, and Jeff Gordon’s are our 5 current referral partners. They are the ones bring us our Dream Kids. Other partnerships such as the Touchdown Club typically have similar passions that align, and we support each other in various ways. For example, we started our “Day Dream” program in hopes of creating positive sports experiences for children who may not otherwise qualify for a Dream Experience. This year, we have been able to bring two children from each referral partner to each Touchdown Club luncheon.

Stacey: Do you have plans to expand outside the Charlotte area?

Shannon: We sure do! We are in the beginning stages of our expansion to Atlanta. Once our Atlanta office is settled, there are several other cities we intend expanding to.

Stacey: I have a child with type 1 diabetes and while life can be difficult, it is manageable. My son will (hopefully) have a long and happy life. We tell him diabetes can’t stop him. Why do you think it’s important for these kids to have special experiences? This is not Make A Wish where the children have a terminal illness.

Shannon: I love that you said you tell your son that diabetes can’t stop him. That is exactly what we like to show our Dream Kids! I recently had the opportunity to help lead one of our Dream Experiences. The child is an 8 year old boy born with Neonatal Abstinence Syndrome, which resulted in him having a global developmental delay and ADHD. He struggles with behavioral issues largely as a result of feeling different and unable to do what his peers are able to do. I was able to witness first hand as he gained a confidence that his Mom said she had not seen before. He spent the day with the Yankees at spring training and they made him “one of the guys.” His mom told me that this was an experience she felt would change the course of his life for the better.

While we have Dream Experiences for children with life threatening/terminal illnesses as well, we open the opportunity up to other children who are not usually eligible for other wish granting organizations. These children have been given something that (most) other children don’t have to live with. In our Dream Experiences we aim to give them hope and inspire them to continue believing that they can do anything they set their mind to. And so far, our Dream Kids, and their families and healthcare providers are confirming that its working!

"Dream on 3!" Sam Parker and his family meet Jay Cutler.

“Dream on 3!” Sam Parker and his family meet Jay Cutler.

Stacey: How does someone qualify and apply?

Shannon: We are currently partnered with five different hospitals and/or organizations within the Charlotte, NC area (listed above). These five facilities, along with their social workers and administrators, are our source of contact and information for possible dream recipients. We must follow certain protocol in order to obtain our recipients as well as ascertain their medical eligibility to be involved in sports experiences. Therefore we are only able to receive our recipients and their information through these hospitals/organizations, and not through online correspondence. If a child receives services through one of our referral partners, they can speak with their child life specialist/doctor/caregiver about sending in an application.

Stacey: Where do you get funding?

Shannon: The majority of our funding currently comes from corporate sponsorships and in kind donations. On average, our in-kind donations cover about half of the expenses of our Dream Experiences. We have an annual Dream Gala which raises a large portion of our annual operating budget. This year, we have been working to get each Dream Kid a “Dream Sponsor,” where a company or organization donates $5,000-75000 to cover the portion of the Dream Experience that we don’t get from in kind donations. Other funding comes from various fundraisers, such as 5ks and our Annual Crossfit Charity. This year we are launching a 24-hours of giving campaign called #DO3BeginsWithMe. On October 1st, we will be asking donors to help us reach a goal of 1000 people to donate at least $10 before the 24 hours is up.

Thanks, Shannon! You can learn more about Dream On 3 here. Read more about T1D Dream Kid Sam Parker’s meeting with NFL player Jay Cutler (who also has type 1 diabetes) here.  Best of luck to DreamOn3 as they move forward with fundraising and helping more kids!

note: this interview was conducted via email and has been edited slightly for space.

Diabetes Connections – Teenagers

Teenagers are special to begin with. Throw diabetes in the mix and you’ve got what my guest this week calls a “challenging time.” Moira McCarthy has a way with words and she offers great, realistic advice.

McCarthy is the author of Raising Teens With Diabetes: A Survival Guide for Parents. She speaks frankly about the struggles she and her daughter faced, after years of being a “model” diabetes family. You’ll also hear from an adult with type 1 who looks back at her self-described rebellious teen years and has some advice for kids and parents. Plus, what I learned recently about talking to my ten year old that I hope will help in the “challenging” years to come:

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raisingteenscoverHelpful links:

Raising Teens With Diabetes (Amazon page)

Moira’s blog post, “Our DKA Story (The one I’ve never told the world before. And the one that scares me to share)”

Children with Diabetes Friends For Life (and other conferences)

 

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