My remarks from #ePatCon

with WEGO Health CEO Jack Barrette

Below are my remarks from e-Patient Connections 2012. I was at #ePatCon as a guest of WEGO Health where I was recognized for being the 2011 Advocating for Another award winner. The occasion presented me with the opportunity to speak about what my advocacy means to me. Below are my remarks as delivered.

Hello... My name is Scott Benner. My daughter Arden is eight years old and she was diagnosed with type I diabetes just after her second birthday.

Our life with Arden's chronic illness fills my heart with so many conflicting emotions - Feelings that don't seem like they should be allowed to inhabit the same space. Love & pain, anxiety & hope, sadness, personal growth...are just a few of the adjectives that describe my families day.

I open my heart and give a voice to the struggle on my blog to hopefully show the world what Arden's life is like so that others may understand, so that my fellow CareGivers, the ones that don't have this voice or perhaps don't want the attention can know that their pain isn't theirs alone to endure. This is a life that often is too much for one person to bear, but together,..... together we are stronger and more determined then our illnesses.

Social media saved me. When we share, when we let others see our real and honest human struggle... it helps people. It builds community, creates a support system, provides relief, connection, love... and I am recharged by the knowledge that when I write, my words create hope... and I am saved as well.

I think that I was awarded the 2011 WEGO Health Advocating for Another Award in part because I don't write about numbers, I don't pretend to know all the answers, I just say, "this is how diabetes made me feel today... Maybe you feel like that too." And I hope that knowledge, that simple act of letting screwed up feel normal... helps someone to feel anything other then alone.

I am transparent on the Internet because helping others is the only thing that I've found that makes my daughter's illness not seem arbitrary and cruel.

I want to thank Jack and WEGO for this honor and encourage all of you to support social media in anyway that you can. It's so simple that it seems like there must be more to it, but there's not. We are the only ones standing in the way of helping people with the full power and possibility of social media and patient bloggers.

The diabetes online community saved me and I'm doing my best to give others the ability to say the same. All you have to do is ignore your fears and run forward and you'll be doing the same.

Hope lives online.

Thank you...

My pictures from ePatCon are available on Instagram, Arden's Day and this PhotoStreamthat I used during the conference to make images available to all as they were being taken. Don't be surprised if you see some familiar faces!

Nomination are being excepted now for the 2012 awards and I'm hopeful that you'll consider nominating your favorite DOC writer(s).

WEGOhealth covered my lodging expenses and travel for the conference.

Blogging Diabetes Podcast (feat. Me)

Recently Tony Rose interviewed me for his podcast, 'Blogging Diabetes'. We talked about raising a CWD, my new book, 'Life Is Short, Laundry Is Eternal', I got a little mushy about my wife Kelly and much more. I hope you enjoy the episode and if you get the chance, I'd love for you to come back here and let me know how I did.

Direct link to Episode BDP 56

Blogging Diabetes on iTunes

WEGOhealth: 2012 Health Activist Awards

Below is an email that WEGOhealth circulated announcing that nominations are now being excepted for their 2012 awards. I was honored to be nominated last year and was surprised when I received the first ever 'Advocating for Another' Award. I want to urge you to take a look at their categories and nominate your favorite writers from the diabetes online community. WEGO is a great way to make our DOC voices heard around the Internet.

As a result of my win last year WEGO has invited me to the e-Patient Connections 2012 conference in Philadelphia next week. There I will be recognized as the 2011 winner and get to speak about what my advocacy means to me. So again, please nominate your favorite diabetes blogger so that perhaps another of us can have this and many other great experiences, next year and beyond.

WEGOhealth is covering my lodging expensise and travel for the conference.

Announcing the 2012 Health Activist Awards!

We're excited to announce the start of the WEGO Health Activist Awards Nominations.

This year, we're extending the nomination period and we've added some exciting new award categories. Now's your chance to recognize someone who has inspired you, helped you, or even changed your life this year - nominate them for a WEGO Health Activist Award!

Click to Nominate a Health Activist

Questions? Get all the details on our WEGO Health Activist Awards FAQ page.

We also need your help to share the WEGO Health Activist Awards with everyone in the online health community. Please take a moment to tweet, blog, e-mail, or facebook to let your friends, fans, and followers know how they can get involved. Here's a sample tweet or post to help get you started: WEGO Health just announced their 2012 Health Activist Awards. Nominate someone: http://bit.ly/haawards12

Thanks for participating in the WEGO Health Activist Awards - and for helping us to empower those who make a difference every day.

The WEGO Health Team

What are your thoughts on this diabetes news article?

My wife showed me this article from NBC news and it made me wonder how everyone felt about the manner in which type I diabetes is dealt with in the media. I hope you leave your thoughts on the writing, topic, how it makes you feel or anything else that strikes you about the article. I'm very interested in your take! - Scott

Surprising number of deaths linked to undiagnosed diabetes

By Linda Thrasybule
MyHealthNewsDaily

People who don't know they have Type 1 diabetes may account for a surprising number of deaths from one complication of the condition, a new study says.

Nearly a third of people in Maryland who died over a six-year period from diabetic ketoacidosis, a condition of severe insulin deficiency, had no known history of diabetes, the study of autopsy results found.

While the researchers weren't able to definitively tell whether those who died had Type 1 or Type 2 diabetes, their high blood sugar levels suggest they probably had Type 1, said study researcher Dr. Zabiullah Ali, the assistant medical examiner for the Office of Chief Medical Examiner in Maryland.

The finding highlights the need for regular physicals that include checking blood sugar levels, especially if warning signs of diabetes are present, the researchers said.

The study was published in the September issue of the American Journal of Forensic Medicine and Pathology.

What happens when the body runs out of sugar

Diabetic ketoacidosis is a complication of diabetes that occurs when body cells don't have enough glucose (sugar) to use for energy, so they switch to burning fat instead. (Body cells need insulin in order to take up sugar from the bloodstream; in people with Type 1 diabetes, little or no insulin is produced.)

High 'normal' blood sugar may still harm your brain

Breaking down fat for energy produces molecules called ketones, which are acids and can build up in the blood. If ketone levels climb too high, they can poison the body, causing chemical imbalances that can lead to coma, or death.

In the study, Ali and colleagues looked at 20,406 autopsies and found 107 people who had died from diabetic ketoacidosis, although only 92 had data available for further review.

Out of the 92 cases, they found that 60 people were previously diagnosed with diabetes, while 32 were not.

Nearly half of those who died with no history of diabetes were in their 40s. The researchers also found that 84 percent of these cases were men, and 53 percent were African-American.

Adults can be diagnosed with Type 1 diabetes too

Type 1 diabetes was long referred to as "juvenile diabetes," because people tend to be diagnosed with the condition during childhood.

But now, "physicians are becoming more aware of the possibility of a diagnosis of Type 1 diabetes in the adult population," said Dr. Mark S. Segal, a nephrologist at the University of Florida, who was not involved in the study.

"It's relatively new that we're seeing more adults are being diagnosed with Type 1," Segal said.

Ali emphasized that people should pay attention to any warning signs that point to diabetes, such as needing to urinate frequently, constant thirst, nausea and vomiting.

Type 2 diabetes linked to common virus

People newly diagnosed with Type 1 diabetes may go through a "honeymoon period," in which they may be able to function even though they aren't making insulin — but that period doesn't last long, he said.

"Once the period ends, they get into trouble fast," Ali said. Healthy people should have their blood sugar checked one or twice a year.

"But if you have symptoms, you should go to the doctor immediately," he said.

Day one of our New School Plan

Arden went back to school today to begin the third grade so it's time to put our new plan into action and see what happens. I had a nice 45 minute meeting with Arden's teacher and school nurses yesterday so we could discuss how the shift in care was going to happen. Having interested, committed and kind people on the other side of the table is such a pleasure, I wish I could thank them everyday for being so wonderful and adventurous.

I say adventurous because today Arden became the first child in the history of our school district to manage their type I diabetes without being required to do so in the nurse's office. I say wonderful because even though we are forging into uncharted waters, no one at the school is freaking out or getting cold feet. I suggested yesterday that we just begin down our new path together and let the process grow and adapt at it's own pace. I was thrilled when everyone agreed even though what I was asking for is covered by state laws protecting children with diabetes and Arden's Endo backed 504 Plan. What I hear from so many of you is that most schools get scared and put up walls when you try something different. For that reason alone I feel very lucky today that I have the relationship that I do with these amazing educators.

What is this New Plan all about? How does it work?

In the past Arden visited the nurse for every diabetes related decision but now she will only be going to their office if an emergency situation arises. We are going to try and limit the visits to unexpected low blood glucose readings, dizziness and other such moments that feel like they aren't manageable over the phone.

I began my day by visiting Arden's class to explain that this year would be different then last. Arden's entire class moved from second to third grade together this year and their teacher stayed with them so everyone understands the nuts and bolts of Arden's nurse visits and testing. This short talk was to take a bit of the excitement away as I don't want the exuberance of the children to cause the teacher or Arden to feel uncomfortable. You may be wondering how seeing something that they all witnessed last year as Arden's nurse visit companion will be exciting? Well, Arden will be communicating with me from her desk with her iPhone. We will be using text messages whenever we can but Arden also has carte blanche to call me and I her as we need/see fit. Talk about progressive, right?! 

I'll be right back... she's texting now...

We just set a temp basal via text and she is going to test in 30 mins and then text me. This is working!!!

Anyway, there are snacks in her class (see above) plus juice boxes in a small refrigerator. She will be carrying her OmniPod PDM as well as a juice box with her from class to class and every room that she visits (Gym, library, etc.) also have snacks stashed with the teacher. I've tried to set the school day up so that her experience in the building mimics the one that she has every other day. Arden doesn't make her bolusing decision autonomously yet so with the exception of the texting/calling, this won't be any different then when we are at home. Actually, sometimes we do text about BGs from room to room so I guess this is almost exactly the same.

Why is this so different?

Arden's school district teaches a number of children with type I diabetes. Many of them test and bolus without supervision, especially the older kids, but they all do it in the nurses office and then record their actions into a log. The school can claim what they want but the log is mainly kept to protect the school from litigation. The kids may use it for reference but make no mistake, it's there to cover asses. Arden doesn't have to submit logs to the school and unless she ends up in with the nurse for care, they won't be apprised of the steps we take throughout the day. It's a different approach then most take but I think it will go a long way toward giving Arden more confidence and independence. Perhaps best of all Arden won't be leaving class so much throughout the day. I found myself so concerned with type I related safety at school that at times I was willing to ignore that so much of the education day was being missed.

typos: Daddy 1 - Arden 0

Day one wrap-up:

Our new plan worked well on the first day. There was one instant where Arden didn't hear her text message alert so I waited for a few moments and then called her. I received texts during class, library and from the bus. There was a bussing issue in the afternoon that caused Arden to be stuck on the bus for much longer then we plan for and her BG did begin to fall during the ride. The entire event was handled by Arden with one text and a phone call.

Later in the day I received a phone call from Arden's teacher, she just wanted to reach out to say that everything felt smooth on her end and the addition of the testing and phone to the room was never an issue. She praised Arden for being so mature with the phone, we chatted for a few minutes and agreed that day one was a success. On to day two...

Special Request

I held this post back for one day so that I could write about the 'Unfathomable Loss' that one of our fellow DOC members recently experienced when her husband was taken suddenly by cancer. I hope that you can take the time to read my post about Meri and her family.

Update on Tuesday, October 2, 2012 at 8:28AM by Scott Benner

The first follow up to this post, 'New School Plan UPDATE: Emojis and texting DexCom data' is located here