2012 Blogger Summit at Lilly Diabetes

Social media is a powerful communication and connection tool. A message on twitter can reach countless people. FaceBook posts receive 'likes', get 'shared' and suddenly people that you've never met know that you support a cause, watched a video or have an opinion. Being connected in these ways is the new normal to those of us that live a part of our lives online and not surprisingly, companys have noticed.

I never imagined that writing about my life as a type I diabetes caregiver would lead to being invited to Lilly's first diabetes blogger summit but that is just what happened. I didn't know what to expect but I knew that the invitation felt like an oppurtunity to represent, as best that I could, the needs of our community.

It wasn't my intention to spend the day taking detailed notes or to report back to you that 'this' or 'that' was said. I wanted to experience the day, lend my thoughts when I thought that they would add to the discussion and see what good could come from the meeting for people like us.

I believe that businesses are mainly created to generate a positive cash flow and that there isn't anything wrong with a company making a profit. That's what my head thinks about buisness. My heart wants something different. In my opinion, companies that make a living in certain walks of life should do so with as much compassion for their customers as their shared situation allows. Making insulin, lancets and other diabetes devices is one such situation. From research and development to an attractive box on your pharmacy shelf, much goes into the development of safe and effective diabetes treatments and devices. I want the company that imagines and develops those things to be compensated. I want their employees to make a fair wage and I think their shareholders should see growth and sustainability. That again, is what my head thinks.

My heart feels that people living with a chronic illness shouldn't be looked upon as a constant cash flow opportunity even though they are. Companies that make the things that keep us alive need to be respectful of the backs that they make their profits on. They also should make allowances for the people that can not, in any way, afford the medications and devices that sustain their lives. It's the right thing to do.

A cynic may say that pharma companies invite bloggers like me to visit so that I'll leave with a positive view of their company, so that I'll write on my website that they are good guys that just want us to be happy. Well, I'm not a cynic but I do think that Lilly and every other company is beholden to their bottom line. The thing is, I didn't meet with a company last week, I met with people that work at a company and these people hold geniune concern and compassion for the diabetes community and the people that make it up. I'd like insulin to be cheaper but I also need for it to remain available. Therein lies the balance that I hoped to see when I visited Lilly and I did.

The building was steeped in tradition but the people inside, the employees, they were focused on today. Something amazing is happening right now in pharma as it relates to consumers. For the first time perhaps, they see the value in us as people and that's a good thing for us. We are no longer customers, never again to be thought of as patients - we are people. We can't and shouldn't blame pharma for taking so long to come to this seemingly obvious conclusion... they didn't know us until recently. How did they finally come to make our acquaintance? Social media introduced us.

Social media is how and why this summit came to be, it gave us all a name and a face, it's how we went from being customers whose dollars were coveted to people whose health outcomes are now followed with great interest and dare I say, real concern. Lilly wants to connect with us and even though I realize that many of you will meet their interest with skepticism, I say that we should embrace this new turn. As long as we continue to ask hard questions as a community and demand that our voices be heard, this new and direct connection to the companies that produce our diabetes supplies should and will be a mutually beneficial one. I'm optimistic and interested to see where this new sensibility takes us.

I'll be talking about the particulars from the day in my next few posts.

Hope you are all well!

Disclosure: I attended an event hosted by Lilly Diabetes, who paid for my airfare, travel, hotel and meals while I was in Indianapolis.

Update on Friday, June 1, 2012 at 11:47AM by Scott Benner

You can find my continuing thoughts from the blogger summit here. 

Arden's retinal nerve looks good

Let me first say I'm thrilled that, "Arden's retinal nerve looks good". I'm super happy in fact that this is the third year running that I've heard those words. However, it is difficult even in the face of such good news not to dwell for a moment on the bigger picture. Arden visits a pediatric ophthalmologist yearly because she has type I diabetes not because we are super careful parents with an unlimited insurance policy. She visits because her endo fears that her eyes may be beautiful little ticking time-bombs. 

"Ten years" the doc says. "We don't usually see complications until ten years after diagnosis". Every year she says the same thing to me as if it's of some comfort. Each time she says those words I I think the same thing, "She'll only be twelve then". This year the doctor must have seen the sadness in my face when she spoke those words because she followed up with, "but they'll be all kinds of new stuff by then, treatments, procedures..." I hope she didn't think that felt in any way comforting to me.

It hit me hardest this year as we walked out of the exam room. Arden was rockin her temp shades and making the best of the day. She knows we visit this doctor because of her type I but that's really the extent of her grasp on the situation. She doesn't know that we come every year hoping to not hear that her vision has been compromised by diabetes but she'll figure that out soon enough. Thankfully, for now that's only our burden to shoulder. 

For today, I'm just happy that Arden gets to treat this visit like a day off from school and a chance to try and overcome those ugly sunglasses with her good attitude and sense of style.

If you or your child has type I diabetes and aren't currently seeing an ophthalmologist as a regular part of your care... please start as soon as you can. Ignoring your future is far worse then existing for a few moments in an unpleasant present.

Floaters: Do they let kids name ailments now?

I never really talk about myself on Arden's Day. In my mind I mostly talk about the reactions, feelings and discoveries that I have related to living with type I diabetes. You may disagree, I may be wrong but either way, I'm going to talk about myself today.

I don't really ever get sick. I remember having bronchitis very badly once as a child, maybe around ten years old. My iron got very low once a few years ago, I ignored it forever, I'm pretty sure that the doctor thought I had cancer but it ended up being something very small and easily rectified. The thing is, I lived for nearly a year with so little iron in my system that by the time I turned up in the doctor's office he told me with not a tinge of joking in his voice, "I can't believe you can stand". I wasn't just standing, I was getting up at all hours of the night with Arden's type I, completing my tasks around the house, taking kids to sports and writing this blog. My point is that even when my body is completely taxed and then some... I keep going.

My experience with type I has taught me not to take my uncommon constitution for granted and I promised myself after the 'Iron incident' that I wouldn't ignore not feeling well ever again, if not for myself then out of respect for the lives that all of you lead.

Last week I was having a catch with Arden late one afternoon, the sky was grey and flat, we were passing the time while Cole warmed up for his baseball game. Arden has been expanding her softball skills and she is now catching fly balls that are much higher then I imagined she'd be able to handle at her age. I noticed that when I would tilt my head up suddenly to throw the ball that translucent worm shaped images would appear in my sight and then float away. Next I saw a spot do the same thing, one shape looked a lot like a DNA sequence. Varied shapes, see through but visible like when they make something 'look' invisible in a sci-fi movie. I was instantly terrified. My vision has for my entire life been 20/15. I see in contrast, color and sharpness in a way that would perhaps be indefinable to a person who needs glasses. Now suddenly I was worried that I was going blind, had a tumor or ya know, cancer...

Turns out I have floaters. No, not bits of pooh that won't go down when you flush but shapes that float through your vision. The doc says that in my case they come with age (wow was that tough to hear). I know becasue I called and made an appointment to see him exactly fifteen minutes after I noticed the shapes. I considered ignoring it to see if it would go away but then I thought that there was no way that I'd let one of my kids or Kelly ignore something like this and I called from the baseball field.

I'm writing this long tale of basically no woe because I owe my new attitude to all of you. There may be nothing more scary then hearing bad health news about your child but you all stand up bravely and hear things far worse then floaters each and every day. I do it with my children and I wanted to take this first personal opportunity to act well on my own behalf. I must say that I was proud of myself for not turning, pardon the pun, a blind eye to my situation but I'm even prouder of each and every one of you for doing the same in far more frightening circumstances.

I don't want to link to a bunch of info that I can't substantiate as accurate but I was told that floaters can occur naturally with age or they can be a sign of something far worse and serious that can be contained if caught early enough. Please seek medical attention without delay if you experience any issues with your sight. Mine, as it is described at the bottom of this page, is never to be taken as medical advice. Always contact a doctor when your health is in question.

Bring Your Child to Work Day 2012

My wife's company, Novartis, does an amazing job every year with Bring Your Child to Work Day, they put a lot of resources and manpower into creating an informative and fun day for the kids. This year the focus was on how products are imagined, marketed, and brought to a store near you. People from all different parts of the company spoke to the children and explained what their department did and why it was important to the process. After each "talk" the kids performed different tasks with the goal of producing a cookie that they could sell at the end of the day.

All of the proceeds from the cookie sales are being donated to our JDRF chapter so the last talk of the day was from me and Arden. We explained the difference between type I and type 2 diabetes, gave an overview of the JDRF and had a hands-on look at Arden's OmniPod insulin pump and her DexCom CGM. Insulet was kind enough to send me some non working or dummy OmniPods so that the kids could try them on if they wanted to.

The day was a wonderful success raising $1,100 for the JDRF, an amount that will be matched by Novartis 100% for a grand total of $2,200! 

One of the best parts of the day was watching the kids work so hard on their cookie ideas, boxes and then seeing the hustle they all showed selling the cookies. It was while they were selling that I began to really notice all of the OmniPods on their arms and I have to admit that it was a very warming experience to see the children so enthusiastic and excepting of it. If I had enough pods I think every kid in the room would have been wearing one.

Arden and her team sold chocolate chip cookies and their marketing hook was that they had a celebrity endorsement, if you look closely at the boxes you'll see, "Arden's Favorite Cookies" on the sides.

Big thanks to Novartis, my lovely wife Kelly for suggesting that the JDRF would be a great place to send the funds collected and Insulet for sending the pods for the kids to wear. 

I explained to the children that advocacy and awareness is what people with type I need the most from them and that I hoped they would tell someone about the good work that they did. I was very proud of all of them for the attention, effort and concern that they displayed throughout the day... it was a great experiance for everyone!

America's Got Talent but no phones

Follow Arden's Day on Instagram @ardensday

Even before type I diabetes we didn't go out very often without our kids. Since type I, well, we do it less. That fact takes it's toll on a lot of aspects of our lives. Please don't misunderstand, we love having Cole and Arden with us but sometimes a person needs a break. Yesterday was our break. Kelly and I went to New York to see an 'America's Got Talent' taping. Kelly is a big fan of the show and I was very interested to get a sneak peak at how Howard Stern would be as a judge. The tickets said that the taping would run from noon to four or five. Arden doesn't get home from school until four. We needed a babysitter...

We only have two D-babysitters...

They were both busy...

We talked about not going.

I was really motivated to find a sitter because Kelly has been working so hard for so long and I really wanted to see her get this break. I did something next that I've never done before, I dropped D-proficient from my babysitter qualification list deciding that I could manage the diabetes on my own remotely if the person on the other end of the phone was focused, confident and understood the gravity of the situation. We have a lot of good friends and know many people that fit that description. Jen answered the call and our plans were back on.

The directions from 'America's Got Talent' said no phones would be allowed in the theater. I (hopefully) thought that they were just trying to persuade folks to leave their phones at home. Within moments of arriving at the Hammerstein Ballroom I heard the first production assistant announce that, "cameras and phones will be checked... no one will be allowed to bring a camera or phone into the taping". I completely understand that they don't want videos popping up on YouTube but I didn't have any designs on such things, I just needed to be able to text with our babysitter. "What to do now" was the question that I asked myself as we stood in line. If I ask politely, they may say no and then I'm cooked... I'd have to summon up my inner teenager, luckily he hasn't gone too far. So for the next hour or so I stood in that line with my iPhone jammed into the side of my left shoe.

I was almost home free when I realized that there may be a metal detector inside. My fear was soon realized as our friends went through the door, Paul turned around and mouthed to me, "wand", they were using a hand-held metal detector, I was about to get caught. Just as I was practicing my speech that was meant to let me keep my phone, the security guard put his arm out and stopped Kelly and I. "Hold on", he said and then directed us to the secondary entrance... the entrance with no wand!

The taping was great fun and I think that anyone who watches 'America's Got Talent' and only knows Howard Stern by reputation will be very happy with how he judges the show. We had a great time and much to our pleasure, never needed my phone. The taping ended exactly five minutes before Arden would get off her bus. I was able to manage her diabetes by phone and text without issue as we drove home. Our sitter (Thanks Jen!) said that Arden seemed very confident with her OmniPod PDM and that our son Cole was extremely helpful as well. 

I think that yesterday was the beginning of the next step for us... More and more of Arden's management will be transferring to her in the coming years. It's an exciting and slightly nervous feeling, but a very good one.