What Lies Beyond My Understanding

That's Kris in the red shirt

I like to wonder about the things that I struggle to understand. I find it relaxing to think about something that I can not fully absorb and then push myself to grasp every facet until I can feel my mind stop trying. That point is the wall, it's the end of my understanding. The topics vary, often I think about type I diabetes, my marriage, my children, what happiness is. Lately, if I'm being honest, I think a lot about how to help my book to find new readers.

I love the quiet that exists when my brain doesn't know where to go next. I don't consider hitting that wall as an impediment, I find it exciting, I trust that new concepts will eventually appear and that anticipation is electric. Sometimes nothing comes, I take those moments as a sign that I'm in uncharted waters, a place that I've yet to explore and I find the challenge to discover new ideas to be intellectually sexy.

Recently at the 2013 Lilly Diabetes Blogger Summit, I realized that there was a new place where answers about type I lived, a place that I didn't yet understand how to get to. That moment was exciting because it meant that one day I could do an even better job of keeping Arden's BGs in range. I like that idea very much.

Olympic skier Kris Freeman visited with our group at Lilly and during part of the discussion that we had with him, he spoke about his team. There are people that help Kris to optimize his insulin regiment so that he can perform at the peak of his promise. His team has, of course, access to machines and monitoring equipment that I don't have. More importantly they posses the know-how and intellectual prowess (far beyond mine) to read Kris's data and implement changes. Now, I don't have a team and I'm not a doctor but neither of those truths brought me down, on the contrary... they made me feel hopeful. If a bunch of smart guys can figure out how to keep an Olympic skier's BG from fluctuating, I can figure out how to mimic that response in a little girl whose sitting in a third grade class and playing softball a few times a week - right!?

It should be known that despite the vigorous testing, his team's calculations aren't always fool proof. Kris told us a story about a wildly varied BG that snuck up on him just before a race. His tale left me sure that diabetes is a wild bucking stallion for everyone at times. I loved how normal I felt listening to an Olympic athlete tell me that his BGs got crazy just like Arden's, it was so genuinely comforting to hear him speak those words.

Back before I knew what a CGM was I would test Arden's blood glucose at odd times just to see where meals and insulin would take her BG. I remember this one day in our Endo's office, Arden's NP asked how her A1c was so good when all of her BG checks where so high, I said, "Oh don't pay attention to those numbers, I'm trying to figure something out". I didn't exactly know what I was doing back then, what I did know is that there was some variable that I was struggling to comprehend, I could feel that it wasn't right to shoot insulin and then just except that the next three hours where okay. Today, thanks to those BG checks at crazy times and the advent of CGM technology, Arden's BGs are far more level and controlled. Tomorrow, thanks to Lilly and our meeting with Kris... I have something new to wonder about, something that may well bring all of this into even better focus. I can't wait to find out what lies beyond that thought.

There's always an answer. Please don't stop looking for it just becasue you've reach the end of your ability to understand. Push yourself, experiment and ask lots of questions until your conversations bring you the answers that you deserve.

Lilly Diabetes invited and paid for me to attend the 2013 summit. Airfare, lodging, food and transportation was all covered by Lilly. I did buy a jammin' lemon pound cake slice for myself at the airport. They never asked me to write about my experience or in any way tried to sway my opinions.

Tears of Insulin

images courtesy of Lilly Diabetes

Recently, I attended the 2013 Lilly Diabetes Blogger Summit in Indianapolis, Indiana. One part of the visit allowed us to witness insulin being manufactured and I'm here to tell you that the experience brought me to tears.

Maybe it was the overwhelming feeling that Arden couldn't live without the concoction or perhaps it was when I realized how many dedicated people it takes to make the insulin that Arden needs so desperately. I'm still not completely sure why the sight of insulin production was so moving to me. All I can tell you is that as those little glass vials were zooming past me and as I watched the mechanical arm fill them, I cried. There I was in a viewing room with my fellow D-Bloggers, all of us clad in hairnets, masks and gowns, when tears suddenly began to roll down my cheeks.

Arden doesn't even use Lilly's insulin and still the thought of this place existing was too powerful for me to ignore. So many people that I love, and so many of you that I call friends depend on places like this. I never really thought about it before, never considered the scope and effort that went into the production of insulin. It was amazing and overwhelming to behold. "Arden wouldn't be here today without out companies like Lilly", I thought as I watched the vials fly by... Then I looked around the room and saw so many friends and fellow D-bloggers who all could make similar statements about loved ones and themselves.

I found the hours that we spent on the production floor to be altering, they filled me with gratitude and humility. Diabetes did it again, just when I thought that my perspective on life was as clear as it could possibly get, diabetes brought things into even tighter focus.

This visit was as close to spiritual for me as anything that I've ever experienced. I went to the place that makes the very substance that my daughter needs to stay alive. What an amazing day, what an honor!

Lilly Diabetes invited and paid for me to attend the 2013 summit. Airfare, lodging, food and transportation was all covered by Lilly. I did buy a jammin' lemon pound cake slice for myself at the airport. They never asked me to write about my experience or in any way tried to sway my opinions.

Pictures from 2013 Lilly Diabetes Blogger Summit

I have so much coming up for you over the next two weeks, let's see.

I'll be telling you about my trip to Indiana to visit Lilly Diabetes where we:

Saw how insulin was manufactured

Met Kris Freeman

Recorded a group DSMA PodCast

Learned about the man who drives Lilly's direction

and more...

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My book, 'Life Is Short, Laundry Is Eternal' won a gold Mom's Choice Award - more about that later.

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While Iron Man was kicking super villain butt, I kicked the ass of a crazy combination of nachos, popcorn and candy. I'll be writing about the unorthodox way that I beat that BG back to where it came from.

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For today, let's get started with some pictures from the Lilly Diabetes 2013 Blogger summit

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Lilly Diabetes invited and paid for me to attend the 2013 summit. Airfare, lodging, food and transportation was all covered by Lilly. I did buy a jammin' lemon pound cake slice for myself at the airport. They never asked me to write about my experience or in any way tried to sway my opinions. 

Pathway to Stop Diabetes

Image courtesy of Pathways to Stop Diabetes

The American Diabetes Association has just announced an initiative called Pathways to Stop Diabetes. Here is a brief snippet from their website about the program's intentions.

We realize that it takes more than natural talent for young researchers to realize their full potential. It takes comprehensive support every step of the way. To make the career commitment to diabetes research attractive, fulfilling and rewarding, Pathway to Stop Diabetes will provide that support in every way.

I think that it's very exciting to see such a large organization thinking about research in a different way. It's also encouraging to see that program financially backed so significantly by pharma companies. I hope you can take a few minutes to learn more about Pathway.

If you are a brilliant young scientist, are raising one or know a young researcher that may be interested in being at the forefront of discovery. Please consider diabetes research as your field of focus. Pathway offers researchers mentoring, grants and much more. Who knows, maybe you're the next Frederick Banting, MD. 

More blurbs from the Pathway to Stop Diabetes website:

"Our vision is simple yet revolutionary: find a new generation of brilliant scientists at the peak of their creativity, then provide them with the freedom, autonomy, and financial and professional resources to set them on the road to breakthrough discoveries."

"Diabetes research is critically underfunded. Twice as many Americans have diabetes as have cancer. Diabetes is over 20 times more prevalent than HIV/AIDS. Yet National Institutes of Health (NIH) funding for diabetes is 1/5 that of cancer and 1/3 that of AIDS. On a per-person-affected basis, diabetes funding is a rounding error in comparison. This difference has persisted for decades." - more

Arden's Day wishes the Pathway program a very successful (but hopefully short) life!

Be well,

Scott

Roche Social Media Summit 2012

The 2012 Roche Social Media Summit was a great example of the old adage that says, "patience is a virtue". Though I had never attended any of the previous summits with Roche it was easy to feel the earnest nature of the people that I was sitting with and that spirit was clearly being fostered by our hosts from Roche.

I bring up patience because the feeling in that room was due in large part to the extended nature of the relationship that Roche and the DOC have been nurturing for these many years. I was partially sad that I hadn't experienced the prior summits so that I could more personally appreciate the journey that this summit has been on. On the other hand, it was exhilarating to show up as the main act was coming on stage so to speak.

As always, when it come to things like this, if you want a detailed who said what or step by step breakdown of the day you are reading the wrong blog but if you would like to feel what I did during the time we spent together, read on.

I can't list every person that attended but I do want to say that they all fit together like a puzzle. Each one brought a specific perspective and when combined, the voices in the room had every aspect of diabetes advocacy covered. A number of things stand out in my mind that I'd like to share. The group is passionate, motivated and please forgive me for reusing a word but, earnest. The countless people that read diabetes blogs in search of support, advice and community are reaching into a very deep pool of knowledge that is being presented by people just like them who want to give back to the community. The diabetes knowledge that I saw was staggering. I count myself as a reasonably intelligent person but there were moments when people spoke extemporaneously about the health, political, and socioeco'nomically sides of diabetes in a way that made me feel like I wasn't operating on the same level as they are. Gathered were so many truly brilliant minds that I found myself wondering if thoughtfulness can be a side effect of insulin use. I'll have to check the package insert next time I open a box.

When guest speaker Josh Bleill spoke about his struggle to recover his will to live after loosing both of his legs while serving in the military, I thought the room couldn't get more silent. Then Josh compared the sharing of his story to our diabetes blogs and everyone in the room seemed to stop breathing for a moment. I remember that as Josh spoke I was struck by how amazing his story was but I didn't quite understand what it had to do with diabetes advocacy. When he connected the dots for us, I immediately felt pride. So many of you have written to say thank you for Arden's Day and I guess that I knew on an intellectual level how much my sharing meant to others but wow do it hit my square in the chest when Josh thanked us for telling our stories. He wasn't saying thank you because he has diabetes, he was saying it because he knows what sharing with such transparency means to others. He was thanking us for our service to the community when all we wanted to do was thank him for his sacrifice for all of us. Please know that every time you share your story with someone else about your life with diabetes, you are helping all of us to move forward.

During the day and a half summit everyone shared thoughts about their life with diabetes while we were discussing multiple issues. Once and a while someone would say something that actually served as a learning experience to the other people in the room. It was eye opening for me to see long-time veterans of life with diabetes make the face that said, "huh, I didn't know that". The moment that stuck with me the most, being a parent of a child with type I, was this...

Steve Richert from Living Vertical spoke to us on day two about Project 365 which is Steve's effort to empower people with type I diabetes through rock climbing. After Steve spoke for a while it became clear that he sometimes climbs by himself. One of the parents in the room began asking questions about how he stays in touch with family and wondered about his safety protocols. She was legitimately worried about Steve but as she spoke her concern manifested into the fear she has about her children and before anyone knew what happened, she was visibly upset. She must have put herself in Steve's mother's position and became overwhelmed by the concern that she feels for her type I children. The room got serious and in one of the silences I leaned into my table and told the people I was sitting with, "she just showed you what it feels like to be a parent of a child with type I...". There was no way to guess that Steve's talk aimed at helping PWD to feel like there isn't anything that they can't do would teach such an unintended lesson. 

The balance of my brief time in Indianapolis was spent getting to better know the other bloggers in attendance, we saw the manufacturing process that yields test strips, talked about products and spoke about how to improve our already wonderful community. It was time very well spent indeed and the experience has definitely helped me to further define the direction I want to take my advocacy and Arden's Day.

I don't pretend to know why the first Roche Summit came to be and I can't vouch for what's in others minds but the two men that plan and oversee this gathering definitely have the DOC in their hearts. I'm hopeful that I represented you all in a way that you could be proud of. 

If you are interested in a very detailed account of the summit I suggest Mike's at Diabetes Mine and David's at Diabetes Daily. Mike takes the best notes that I've ever seen and David types like a madman.

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Disclosure: I attended an event hosted by Roche, who paid for my airfare, travel, hotel and meals while I was in Indianapolis with the exception of a bottle of water and bagel that I lost the receipt for.