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 – Friends for Life

This week I’m double dipping. I’m attending the annual Children with Diabetes Friends For Life Conference and I’m also making that the subject of the latest episode of Diabetes Connections. #CWDFFL is the largest family diabetes gathering in the world. It’s unlike any other conference I know.

On the podcast, you’ll hear from Laura Billetdeaux, VP of Education and Programs for Children With Diabetes. She sparked what became Friends For Life sixteen years ago when she got on a CWD chat room and asked if anyone wanted to meet up during her family’s vacation in Florida. More than 500 people showed up and it’s grown every year since then. Billetdeaux is quick to point out that many people are responsible for organizing and pulling together the conference and many other events each year. But she raised her hand and got it started.

I’ll also talk  about my experience at Friends For Life and you’ll hear from a mom who couldn’t find the support she wanted when her son was diagnosed with T1D as a toddler. She shares how she created the kind of group she wanted to join.

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Helpful links from this episode:

Children With Diabetes website

Children With Diabetes Friends For Life (event page)

 

Diabetes Connections – Camp!

This week’s episode is all about camp. Mostly diabetes camp, but a little bit about “regular camp” as well. I spent almost all of my childhood summers away; camp was independence and fun and a chance to find out who I was, away from my parents and school friends. I’m so happy and grateful that both of my children can share that experience.

You’ll hear from Justin Thomas, the director Camp Carolina Trails, run by the American Diabetes Association and from Galen Horton, a staff member at CCT who works with Animas Corp. Both men were campers in the program once upon a time  and have a lot to say about why the experience is so meaningful. This summer marked Galen’s 30th at Carolina Trails!  You’ll also hear from a once-reluctant camper who turned her experience around and has loved it for nine years. Sara is going to Camp Kudzu as a Counselor-In-Training this year. And I share some information about my son’s time at “regular” non-diabetes day camp and sleep away camp.

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Helpful links:

American Diabetes Association camp finder

Project Blue November diabetes camp guide

Sara (the camper you hear from) is starting a campaign to find positive diabetes support for teens. You can find out more on her blog or contact her through twitter @meow_its_sarah It’s a great idea!

Diabetes Connections is now available on iTunes, Google Play and wherever you find podcasts. Please consider leaving a review and subscribing. Thanks!

Blergh

I know, I know.

Even after eight years, we all make mistakes. Hindisght is 20/20 There are so many vairable with high blood sugar. Blah blah blah.

B came home from diabetes camp happy and bursting with PMA (positive mental attitiuge, this camp’s speciality). His meter told me his average BG for hte week was 135. That’s pretty fantastic for oour growing boy. Of course, the next two days at home, he was in the low 200s. And then slowly climbed the next few days until his BG avergage for the 7 days after camp was 288.

We changed sites, but he came down enough so that it didn’t seem to be the case. He was sitting around a lot, but last week we hit 100 degrees almost every single day. Too hot to even go swimming for more than an hour or so. And he’s alwasy growing. So there were ltos of reasons. And the insulin obttole we were using was the same one he ceom with from camp with. I started changing out the carrteide every two days instead of three thinking maybe it was just too close to his body? who knows.

Finally, we reached the end of the insluin bottle and I cracked open a new one. At 11pm, dude went low for the first time I can remember, deinitely before camp.  Then he stayed just below 100 the entire night. The insulin, of course!!

I’m writing this and then I’m done beating myself up. I told B we’d figure it out (like we almost always do witih extended highs like this, the radnom ones I sometimes just have to chalk up to the moon or bad juju) and he didn’t care. I tell him as long as he’s checking, treating and not secretly eating we’ve got nothing to worry aobut. But man, I’m so mad.  Why didn’t I just think of the inuslin?

This happened last summer after his regular cmap as well. There may be somethig about he mahic of camp. Insuling hta tworks there just doesn’t work as well at home?

Oh well.. bring on the next diabetes mytery.

Diabetes Connections – Camp

dont forget sarah’s new teen project

Diabetes Connections – Sierra Sandison

Last year, the diabetes community watched with the rest of the world as Miss Idaho was voted People’s Choice in the Miss America Pageant. Sierra Sandison won the Miss Idaho pageant with an insulin pump clipped to her bikini, prompting the #showmeyourpump social media movement.

This week, Sandison’s year as Miss Idaho came to a close. We talk about her new book and online projects as well as take a look back at her incredible experience at the Miss America Pageant. I also took a few questions for Sandison from Facebook, about advice for teenagers and what she does when diabetes feels like a burden. In Community Connections, you’ll hear about a new diagnosis, a new school, and a fortuitous meeting for the family of a first grader.

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Helpful links from this episode:

Sierra Sandison’s Sugar Linings Blog (and book)

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Type 1 Teens – Sandison talks about this group started by her friend Hadley George

Diabetes Connections is now on iTunes! (click here for direct link) Please leave a review – that really helps us get noticed – and subscribe.

Positive Spin?

I left a comment on a Facebook diabetes group post recently and she replied, “Thank you, Stacey! You always have the positive spin!”

At first, that made me feel good. Then I thought about it. Always positive? Am I the cheerleader of this group? I do try to be optimistic about diabetes management. After all, the parent sets the tone and I don’t want my son walking around in a gloom-and-doom cloud of fear. But T1D is hard. Any type of diabetes is hard. It’s relentless. It’s always there and if you ignore it, it just makes things worse. It’s a giant pain in the ass and it’s important to acknowledge that.

I didn’t always think that way. About three weeks after Benny was diagnosed, we went to visit my parents. I wanted my mom and dad to think everything was still okay. I didn’t want them to worry. So I was going to show them that we were fine. We had it under control. My not-yet-two-year-old didn’t mind 6-8 blood sugar checks and sometimes that many shots a day. It was all good! We were the most fabulous diabetes family!

Of course, that wasn’t true and I burst into tears about 15 minutes after walking into my mom’s house. Because this sucks and we aren’t perfect and if your mom can’t hug you and know the truth, who are you going to tell?!

But… I also don’t want anyone feeling bad for my son. I don’t want you to look at Benny or my family and think, “Oh, that’s so sad. Poor them. Their life sucks.” Because it doesn’t. It’s not exactly the life I expected, but it’s still pretty great.

I don’t want your pity, but I will claim my own sadness and frustration. I can’t pretend everything’s always fine, it often isn’t. And we usually have 5 or 6 things going on that you might not see. That’s okay. You probably do to.

I’ll keep going with the positive spin on Facebook, and elsewhere, hopefully with a nod to how hard this can be. If you deny the frustration and sadness that comes along with a chronic illness, you don’t do yourself any favors. But if you also deny the joy you still have, you’re missing out on so much more.

Diabetes Connections – Six Until Me

This week I’m talking with writer, speaker and advocate Kerri Sparling. Her website, Six Until Me, is home to one of the most widely read diabetes blogs in the world. She is also the author of Balancing Diabetes.

Kerri’s blog was one of the first I found after my son was diagnosed in 2006. The unique title comes from the age at which Kerri was diagnosed, but it’s so much more than that. You can read more about the story behind the name here.

Kerri & I talked about the early days of diabetes blogging, deciding what to keep private when you discuss your life online, and the power of ordinary success. You’ll also hear about a coincidence that made theater camp better for a child with diabetes, and I share how I found other d-families near me (plus a bit about my love/hate relationship with diabetes Facebook groups):

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Helpful links from this episode:

Blogs Kerri mentioned as some of the first she found:

Scott Johnson, DiabetesMine, Kathleen Weaver

The Spare A Rose campaign

 

Diabetes Connections – Bigfoot Biomedical

Thank you so much for a great response to the first episode of Diabetes Connections!

This week, I’m talking to Jeffrey Brewer, former head of JDRF, now CEO of Bigfoot Biomedical. You’ll find out how this new company hopes to simplify diabetes management through technology and hear the story behind the Bigfoot name*. We also hear about a teenager’s first trip away from home and how a diabetes connection on the road made a big difference. I’ll talk about some important advice you can give your young child this summer to make school better in the fall:

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Helpful links from this episode:

504 Plans (ADA Safe at School)

The letter I send home to parents after my annual talk at school

*This interview was conducted just before a few big announcements from Bigfoot Biomedical.  They bought the key assets of Asante, the makers of the Snap Pump, who recently announced they were closing up and stopping production. Bigfoot also signed a development deal with Dexcom. Good write-ups on all of this news from Diatribe and Diabetesmine.

The Diabetes Connections website is coming soon and the podcast will be available on iTunes, etc in the near future. I appreciate you being here at the beginning! Please let me know what you think in the comments and what else you’d like to hear.

Diabetes Connections – The Podcast

I’ve spent my entire career in broadcasting. I started in radio before I even graduated from college. When I left my morning show after ten years, I didn’t miss waking up at 3am, but I did miss the interviews. I missed speaking with interesting people and learning something new every day.

I began to think, why not do that again, but use those skills to listen and learn about diabetes? So that’s what I’ve done. Introducing my new podcast, Diabetes Connections.

The first episode is with someone who helped make dozens of connections earlier this year, at the Diabetes Unconference. Christel Marchand Aprigliano, who blogs at The Perfect D, talks about the power of “me too.” You’ll also hear about a separate, chance diabetes connection at Target that lasted til closing.

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In the weeks to come, this website will change a little, and there will be a place for your feedback, guest suggestions and a way to share your stories of connection.  I’m excited to hear from you.

Thanks for listening!

Graeter’s Low Glycemic Ice Cream – Review

Well, this was fun.

The people at Graeter’s asked us to try their new low glycemic ice cream. Their slogan for this is “Don’t be shackled by sugar… 50% of the sugar and 100% of the fun. Whether you’re managing diabetes or shopping for someone who is, one scoop of our low-glycemic ice cream serves up a deliciously responsible indulgence.”

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What does low-glycemic mean? It’s a way to help figure out which carbohydrates are more slowly digested. Some foods, like white bread and white potatoes are high glycemic, they’re easy for your body to change into glucose. High glycemic foods shoot your blood sugar up quickly. Low glycemic foods like vegetables and whole grains are more slowly digested and are better for steadier blood sugars. Here’s a good idea of how some common foods measure up. 

My husband has type 2 diabetes, my son type 1.  We don’t really use the glycemic index, especially when it comes to sweet stuff like ice cream. After some trial and error, we’ve settled on smaller portions of the real thing when it comes to desserts. I was pleased to see this ice cream was sweetened with monk fruit instead of chemical/artificial sweeteners. But it still has a longer ingredient list compared to the “regular” flavors.

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My husband and I thought the vanilla had almost an ice-milk taste about it. Not our favorite. We both liked the chocolate chip varieties better, especially the giant chunks of chocolate Graeter’s is known for. Really yummy. My son loved the taste of the butter pecan, but was trying to avoid the actual pecans.  Graeter’s puts a lot of chunks and nuts in their ice cream, so that was kind of impossible. My daughter liked the mint chip best.

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Giant chocolate chip chunk!

The carb content on this product is almost identical to the “regular” Graeter’s product: the chocolate chip has 29 carbs for a 1/2 cup of low glycemic, compared to 30 carbs for the same “regular” portion. Since we dose insulin based on carbs, that’s a wash. Of course, if Benny ate the whole pint, the higher fat content of the regular version (6 more grams of fat per serving) would probably then slow down the carb absorption.

Overall, if you’re looking to cut some calories and sugar out and still eat the same portion, this is a quality product and tastes better than other low-fat or low-cal desserts I’ve brought home from the grocery store. The big chunks of chocolate are fun to dig out and taste terrific. Are people looking for a low-glycemic ice cream product? I guess we’ll find out.

Disclosure: Graeter’s PR firm sent us the ice cream at no cost and asked me to share our thoughts. They did not ask to see my remarks or compensate me in any way other than with the product shown above.