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Category Archives: Children with Diabetes

Those leftover Christmas stamps

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I don’t even remember how it started or when I got involved but a few of us (C, Simon, Kim, Jess) were talking on Twitter about a week ago about the fun of “real mail.”

Until last week, I don’t think I had ever addressed a personal letter to someone in another country. When I was in England for a few weeks in college, I wrote some letters home. This is certainly the first time I have sent anything to Australia!

Instead of writing on my blog the past few days I’ve been writing notes and letters. And today when I went to Target, I spent WAYYY to much time looking at stationery.

And those stamps I bought in December, I finally have another use for them.

This is one addiction that might actually be good for me (as opposed to the Diet Pepsi and chocolate/peanut butter problem I have).

Sam Talbot WINNER!
In other post office news – Jaimie is getting a signed copy of the recipe booklet that Sam Talbot shared at Friends for Life. He showed us how to make the recipes in the booklet (you can see the videos of his lesson in this post) so I expect greatness from you Jaimie! Or at least pictures of your efforts!


About that focus group – a follow up

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Earlier today Jess and I participated in a conference call with Ambre Morley the Associate Director of Product Communications from Novo Nordisk in response to this post. In addition to my post, Jess had sent an e-mail expressing her frustrations to a contact that she has at the company.

Misunderstandings from both sides of the table led to the frustrations and anger expressed on Twitter and in the post.

Hopefully this post can add some clarification by providing both mine and Jess’ feedback from the conversation.

First of all, I offered to and have removed the pictures of the facilitator from the previous post to, as I see it, protect his integrity since he cannot provide his perspective on the situation. I did not alter any of the text of the previous post and stand by everything that I wrote.

Any comments connected to that post have been approved as written and the only moderation of comments that (at this point) I believe in doing on my blog is to remove obvious spam. If you have something to say, I believe other people should be able to read it.

Because of the busy schedule of Friends for Life, most of the people in the room (my entire table) arrived late to the session and may have missed the introduction that explained that the facilitator would be asking questions that may seem obvious. An online community member who was there for the whole session said that she also did not catch the disclaimer.

One suggestion that Ambre was very open to hearing was making sure that people who come in late to their sessions would be briefed on what was happening in the room. Laura Billetdeaux from Children with Diabetes had told us that if we didn’t like a session to get up and leave and try another – I am sure that we are not the only ones who walked into sessions late throughout the week.

The facilitator of the session has worked in the field of diabetes for ten years. As Ambre stated during our call they have to ask question that may sound silly or where the answer sounds obvious to us but she emphasized that “if we don’t ask the questions, we can’t say we know what people with diabetes feel like.” The people working at Novo may think they understand the wants and needs of the people within the diabetes community but without our words they can’t take that information back to the company as research. I can appreciate that.

Another point of contention was addressed by Jess in her e-mail but I did mention it specifically in my earlier post – however it had been tweeted about during the session. That is the issue of privacy. I know that the point of a focus group is providing information to an organization about a product or a topic. However, when applied to something like diabetes that we live with 24/7, I think it enters dangerous territory.

We often live with the “numbers” of our condition being an assessment of our control and our competence in managing the many details of life with diabetes. For example, during the session we were asked to raise our hand to identify our A1c levels. I don’t think that is information that needs to be shared verbally, even in a focus group setting.

I can partially understand the issues that Novo was facing in the focus group. For my job, I often find myself presenting in front of groups and sometimes those groups are not as interactive as I would like. My typical approach to encourage conversation is to pick someone in the group who I know and call on them by name to respond to a question. The difference is that I am not asking people to provide private medical information and the focus group had the potential to do so.

I believe that Ambre understood the feedback from us in being sure to emphasize in future sessions that no one feel pressured to share and that people would be given the opportunity to share the desired information privately if they would prefer.

Ambre, Jess, and I may not have ended the conversation in complete agreement but I believe we have made progress from the initial post and follow up comments. I can appreciate the difficulty for the groups on both “sides” of the issue. Their focus groups are closed and not videotaped or recorded. They can’t disclose what happens in the room, and as participants, bloggers like Jess and I are only able to share what happens from our perspective. As the diabetes community grows, I expect that this will not be the last time that there is a discussion similar to this between a pharmaceutical company and members of the diabetes community.

As this week’s DSMA discussion indicated, the diabetes community – both online and offline – is growing in our voice and our reach. I hope that companies like Novo Nordisk will continue to be in a place to listen and I look forward to attending their focus group next year at Friends for Life.

Jess’ Feedback

I am glad to have had the opportunity to speak to Ambre on the phone. My feedback needed to be heard. While the conversation may not have resolved everything, I feel like we definitely found some common ground.

I think Ambre left with some solid suggestions to use in future focus groups. I did still leave with the impression that we should not have been upset by the questions at the session. But the bottom line is that Sara and I were upset. I understand that that was not the intention, that Novo does a lot to help people with diabetes, and I am thankful for that. But we were still offended. And that’s ok. We may never all see exactly eye to eye on the situation, but that doesn’t mean we’re not on the same side.

Am I still upset by some of the questions and the way they were asked? Yes. Does that mean I would never attend another Novo focus group? No, it does not. Nor does it mean I think others shouldn’t go. These focus groups do important research, and our voices need to be heard. We should go if given the opportunity.

Is there room for improvement? Yes. But hopefully Ambre and others at Novo can incorporate our suggestions for use in future sessions.

Two more stories

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There are two more stories I have to tell before the end of my Friends for Life summaries.

The first is about my best pharma friend (BPF?) Brian.

A few years ago, I had a favorite pen. It was actually one of the first pictures I ever took when I got my Canon SLR.

September 5, 2008 - diabetes365 - day 333

I loved that pen.

Until the day that I lost that pen. My life was never the same.

I looked everywhere for a replacement pen, but due to the product placement of a certain Jonas brother, the Simple Wins were no longer in style.

In a desperate final attempt, I stopped by the Bayer booth when the exhibit hall opened at Friends for Life to see if by any small chance they had any Simple Wins pens. As I suspected, they weren’t making them anymore and they didn’t have any at the booth.

I was about to walk away in tears when Brian stopped me. He said he thought he might have one in his car. If I was willing to wait, he would try to track down a pen for me.

Simple Wins

Before long, I felt a tap on my shoulder and saw one of the most beautiful sights.

best pharma friend - by Kerri thank you for the picture, Kerri!

Seriously, have you ever seen such a big, ridiculous smile on my face?!?! And who said big pharma does not care about us?!?!

Thanks Brian!!


The other story that needs to be told is about the new favorite Type Awesome of the adult crew.

Her name is Dr. Jill Weissberg-Benchell and awesome does not even begin to describe her.

I think she was supposed to talk to us about managing transitions as adults, but she never made it past the first PowerPoint slide. Instead, we sat in a circle and passed around the tissues.

It is not often that you find a mental health professional who understands what it means to live day-to-day with diabetes.

Jill gets it.

Jill gets us.

Most, but certainly not all, of the people in the circle were involved in diabetes related social media in some way. She was amazed by our ability to encourage one another in that regard while simultaneously being hard on ourselves and refusing to give ourselves a break.

I have been repeating one of my favorite quotes from her since the session ended.

“Shoulds breed shame, so stop shoulding all over yourself.”

Think of how many times you say “I should take better care of myself” “I should treat my high blood sugars before they get so high” “I should test more often”


How about “I will take better care of myself” “I will treat my out of range blood sugars quicker” “I will test more often”

Isn’t that empowering?

Thank you so much for everything that you do Dr. Jill. And you still owe us a nail painting session!

To the left… water aerobics

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As mentioned in a previous post, the adults tried to squeeze EVERY moment of fun out of Friends for Life. This included the night we stayed up until 3 am chatting.

The next morning it was pretty difficult to wake up. Thankfully, it was the “family day” at the resort, so when our room didn’t stir until 11 am, we hadn’t missed much.

After everyone got “suited-up” we headed over to the pool. My Aquapac came in handy once again, and I answered a bunch of questions about it. I was admittedly eyeing the waterproof Animas pumps with a bit of jealousy.

Kim and JessCourtney and Kim

The pool was filled with people with diabetes and the people who love them. It was a totally normal thing to see a little kid swim by with a pump site on his arm and sensor site on his back.

The adults didn’t do much actual swimming, but it was nice to cool off a little from the central Florida heat and humidity. I rode down the waterslide behind Joe Solo at one point, but I don’t think that guy is actually a day over twelve in his heart.

new friend Shay
new friends Jacquie and Bob
new friend Courtney (squeee)
Jess and Josh
Shay and me :)
ignore my pool hair

About a month ago, my beloved Flip camera broke. Since they aren’t making them anymore I had to find a new option. Kodak makes a waterproof camera about the same size as the Flip, which is how I was able to capture the pictures in this post – as well as this video footage.

Guest Post – Jess’ Moments

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I am out of town this week spending time with family and celebrating my grandma’s 85th birthday.

Since I’ll be busy chasing my niece and nephews around and trying to keep up with my aunts, uncles, and cousins I asked my friends to help me out with some guest posts. Jess and I only met just two weeks ago (wow!), and my only regret is that I didn’t know her sooner. I am already saving my pennies to head her direction this fall. To stay with the theme of the blog, I asked her to write about her favorite “Moment of Wonderful” that she has experienced either because of or despite diabetes. Enjoy!

P.S. I added the pictures. 🙂


Honestly, when Sara asked me to write about my own “Moments of Wonderful” in regards to diabetes, I was excited. And then she said I couldn’t use Friends For Life.

Gee, thanks Sara. 🙂 [no problem!]

ignore my pool hair

I could sit here and write a long, gushy post about how much I love the DOC (you all know how much I love you, right?) but something wonderful happened today and gave me inspiration.

We all have run-ins with other diabetics. Jacquie wrote my favorite post on the subject a while ago. Sometimes you notice a pump from afar, like the lady I saw at the mall a few months ago. It was crowded and she was walking at a good clip, so I opted not to chase her down and accost her…

Other times, you may hear another pump beeping, as I did at the theater when we went to see Jane Eyre (sidenote: that movie is AMAZING! And that’s my favorite book of all time, but that’s another story).

Anyways, so I check my pump because I hear beeping, but it’s not me. I look over and see the woman a few seats down putting her pump back in her pocket. We had a lovely little chat.

There’s just nothing like being in the same room with another PWD. That instant, I-am-not-alone feeling. Which I have been missing since leaving FFL.

new friends saying goodbye :(

However, in the two weeks since getting home from the conference, I’ve had more run-ins with fellow PWD then in the whole year before! It’s crazy!

Back up to two weeks ago Sunday. We go out to eat after arriving back home, and I spy a pink Ping from across the restaurant in the pocket of a waitress! Unfortunately, when we went to leave, I couldn’t find her. But we were there at the same time, which made me smile.

The next day (Monday), I had to report for my first-ever jury duty. I was nervous. They didn’t pick me, and while that was exciting, it was not the highlight of the day.

During one of the breaks, I went to talk to the judge about my D.

“Hi,” I said, “I just wanted you to know that I have Type 1 Diabetes.”

The judge smiled and said, “Me too!”


We chatted for a bit. He was diagnosed at 17 and has never used a pump.

“Whatever you need,” he said, “just raise your hand and let me know.”

I had a whole speech prepared, people! About how I was going to beep and maybe have to leave the courtroom to treat, but I didn’t have to say any of it. It was wonderful! I wanted to hug the judge, but I was afraid that would be frowned upon.

And then last week at the pool, I saw that familiar sight (or site- HA), a Quick-Set. But not on me, but on a young teenage girl. I said hi and talked to her for a couple minutes, but she was pretty shy and not much for chatting. We did have matching purple pumps, though.

And then today, at the same pool, in the same area where I always sit, I saw another Quick-set. I looked about three times just because I couldn’t believe it!

I wound up talking to this woman for about 45 minutes, and it was so cool! She’s been living with D for 31 years! Wow!

We talked about the pump and CGM (she tried it and didn’t like it), and found out we see the same endo (whom we both adore), and how much we hate lows.

It was wonderful! Definitely the highlight of my day. I may never see her again, but we bonded for that short time.
Jess and Josh
For me, these are all moments of wonderful.

Also, I think I need to make some blog cards and start carrying them around since I keep running into all these PWD. And some of Kim’s cards for when I tell them about the You Can Do This Project.

Jess close up

If you have not read Jess’ blog before, go visit “Me and D” right now! She is awesome!!!

Sam Talbot makes a hot dish

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Sam Talbot is hot.

Sam Talbot is a chef.

Sam Talbot also has Type 1 diabetes.

Thanks to some sort of combination of those facts, Sam Talbot joined us for the Adults with Type 1 reception at Friends for Life.

Adult Type 1 reception

For those of you – gasp – not familiar with Chef Sam, he finished third on the second season of Top Chef. He is now the executive chef at several restaurants.

The adults were, thanks in part to Tandem Diabetes Care, able to enjoy a nice reception and a cooking lesson from Chef Sam.

There may have been a Q&A session, and I may have asked a question on behalf of C that some girls in the bathroom told me violated the girl code.


But other than that incident, it was a great time!

Sam Talbot

Jess and her Type Boring

friends (with pumps and diet coke)!

drooling - over food and chef

After the demonstrations, Chef Sam was nice enough to host a meet-and-greet with us as well. The conference had put together brochures with the recipes from the night that Chef Sam signed for us.

um, yeah

Chef Sam graciously agreed to sign an extra for me. If you would like it to be yours, leave a comment on this post by midnight on July 26th and I will randomly pick one of the comments and send it your way. If you were at the reception, I’m excluding you from the contest 🙂

By the way, Chef Sam has a book “The Sweet Life: Diabetes Without Boundaries” coming out on October 25th that combines his story of his life with diabetes with his “foodie tips” and some of his favorite recipes (with carb counts). Pre-order the book today!


Disclosure: I paid for all expenses (travel, food, lodging) to attend Friends for Life. While there, I attended the reception described above. I was given the recipe brochure described in this post. I was not asked to blog about the session and all the thoughts and drooling described above are my own.

And then I threw up on him

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By the end of the official conference schedule, we were all exhausted. All I wanted to do was head back to my room and take a nap. I am glad I was talked into attending the closing session and hearing from Ironman Triathlete Jay Hewitt.


Jay and I share a similar story.

No – not the athletic part – I prefer to supervise. Both Jay and I were diagnosed with Type 1 diabetes as adults and in both cases, doctors attribute part of our diagnosis to stress.

During the closing session, Jay shared part of his story and he tells it with such passion (and jazz hands as he demonstrates swimming) that we couldn’t help but tweet about it.

Some of my favorite tweets and quotes from the session –

“You have to make the bad thing that happened to you the best thing that ever happened to you”

“The ironman is so physically demanding it’s the smartest athlete that wins. Same with diabetes.”

“Failure is a part of success. It’s learning how to fail forward.”

“There is a fine line between courage and foolishness. Too bad it’s not a fence”

And his finally his description of his first triathlon picked up by Brian (@buzznotmycell) “apparently only after 123 miles will a triathlon begin to hurt. #ffl11”

Even with all the joking, his message was really inspiring. He was so close to saying “it” several times in his speech that I sent a quick tweet in Kim’s direction.

you can do this tweet

We tracked him down during the meet and greet after the session, and… you can read the rest of it on Kim’s blog [spoiler alert: you can watch his video there too].

Here’s a bit of his inspirational message during the closing session. Be sure to watch the last 30 seconds.

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