January 24, 2012

One Father's Story: Arden's Day

"I hunkered down, stayed in my house with Arden, and figured everything out as if we were the first people to have this happen to them… It may sound odd, but I didn’t ever consider turning to the Internet, and I still, to this day, don’t know why. I should have." – Scott Benner (Arden's Day)

On July 22, 2006, Arden Benner turned two years old and was given a clean bill of health. However, shortly after her annual checkup Arden's parents noticed she seemed sick. She had a slight fever, was lethargic, had constant urination, she would sleep for hours on end. It was not long after these initial symptoms that Arden was diagnosed with Type 1 Diabetes. It was at this time that Scott Benner; Arden's father, took a proactive approach to caring for his daughter. 

Scott has built one of the most successful blogs for parents with children with diabetes. His blog, "Arden’s Day," was recently recognized as one of Philadelphia's most valuable blogs for 2011. Scott isn't stopping there. Recently, he started a charitable foundation to raise money for families who can't afford insulin pumps for their children. Though there is no cure for diabetes, Scott and Arden's journey with diabetes is an uplifting story about the proactive approach parents can take with their children. CallingAllTypes recently reached out to Scott to learn more about their story. Here is our conversation with Scott.

CallingAllTypes: Tell us a little bit about your daughter Arden.

Scott: Arden is difficult to describe. She is sweet, considerate, and empathetic but equally spirited, focused, and sharp. She can be warm and cuddly, but I wouldn't try to get something over on her. She enjoys all things girly yet can hit a softball out of the infield. Perhaps I should have just said, "She's the best."

CallingAllTypes: When Arden was first diagnosed with diabetes, what was the process you went through to learn about diabetes?

Scott: I don’t recommend the process that I used, but I imagine that I wasn't the first to employ it. I hunkered down, stayed in my house with Arden, and figured everything out as if we were the first people to have this happen to them. I taught myself from the ground up with the help of my wife Kelly and the information that we received from Arden's endo. It may sound odd, but I didn't ever consider turning to the Internet and I still, to this day, don't know why. I should have.

CallingAllTypes: Can you give us an example of one of the challenges you have faced as a parent of a child with diabetes?

Scott: The toughest part for me was managing all of the new stress that I was experiencing. I definitely didn't do well with it in the beginning. I guess if you call crying in the shower and stress eating "manage," then I did okay. I've since learned to deal with things much better. Diabetes has taught me that I can handle much more then I once thought possible.

CallingAllTypes: When and why did you decide to start a blog?

Scott: I recently admitted something on my site and I'll mention it here to answer your question. I had never seen a diabetes blog when I first pushed Arden's Day up onto the interwebs in August of 2007. In fact I felt a little like Chris Columbus for about a week, which is how long it took me to realize that I had discovered the Americas but in 1973. I published my thoughts about being the caregiver to a child with type 1 to give my family and close friends the insight that I thought they would need to interact with us in our new situation. I never intended or expected that anyone else would see it (though I may have hoped). About a year after that was the first time that I made the URL public, and that was only to try and increase my JDRF Walk donations. Arden's Day has come a long was since then.

CallingAllTypes: What kind of reaction have you received from other people about your blog?

Scott: The first person that ever emailed me did so to give me advice. It was advice that I clearly needed, and she reached out on her own. Her kindness was the first time that I experienced the power of the diabetes online community, and it is the basis for why I was able to keep the site going this long. It feels good to help people avoid some of the unnecessary growing pains that come with learning to live with type 1. People have told me that because of how young Arden was when she was diagnosed (almost exactly 2 years), the site is like a "What to Expect" book. A roadmap that tells you that the road is about to bend hard to the left before you can see it coming. I take a great deal of pride in knowing that it helps.

CallingAllTypes: How do you use social media? Have you found information through social media that has changed what you and your daughter do to manage her condition?

Scott: Social media has taught me that no one should have to learn about type 1 the way that I did. I think that your endo should show you how to get a Twitter name before you leave the hospital. I have received and shared so much good and timely information with people through my site, and it makes me sad to think that there are people out there that want and need this information but can't find it. I've learned way too much with the help of others to list everything, but one recent example would be that social media helped me find a better insulin for Arden.

CallingAllTypes: Could you talk about the charity foundation you're starting and how people can get involved and support your cause?

Scott: Two years ago (maybe more now), Arden began using an OmniPod insulin pump; I was immediately struck by how much easier managing her type 1 was with a pump. The stress relief alone was immeasurable. Since then, the amount of people that I hear from that can’t but want an insulin pump and continuous glucose monitor is staggering. Most of them are insured but either are underinsured, incapable of affording the out-of-pocket costs or both. I spent a number of years wondering how to help those families feel the relief that these amazing devices can bring. One day in November of 2011 I made the decision to launch a charity to help children accomplish this goal.

I reached out to the DOC, (Diabetes online community), and made my intentions known. I couldn’t afford the 501(c)3 filing fees on my own so I asked on my site if anyone could consider throwing a few dollars in to help. Even though I haven’t been granted a charitable organization distinction yet, in four days there was nearly $3,000 in the PayPal account that I set up. I also received many offers to help and a ton of support. One of the many emails was from an attorney that offered to help me get set up. That process is happening now, and I expect that we should have all of the necessary paperwork filed this spring. After that, we wait for the okay from the government and then the good work can begin. I’m currently talking with a few organizations that are interested in sponsoring my idea, and I think that, with some luck, we may be able to begin getting kids pumps and CGMs by late 2012- early 2013. 

If this charity seems like something that you would like to support, fund raise for, or just be kept in the loop about, the best way to let me know (for now) would be by becoming a site member at Arden’s Day. When the time comes for action, I’ll be able to contact you.

You can keep up with Scott and Arden's initiatives by following the links below. On behalf of the Calling All Types team, we'd like to thank Scott for taking for sharing this story. We wish the entire Benner family the best of luck going forward.

Keep in touch with the Ardens day blog: www.ardensday.com 

Follow Scott and Arden on Twitter: @ArdensDay

Join the conversation on Facebook: www.facebook.com/ArdensDay

The decision to participate is always yours and your feedback is always wanted. At Calling All Types, we believe finding the right online resources to better manage your diabetes should be a whole lot easier! So sign up and be a part of our growing online health movement. Once you’ve joined, stay connected with us through Twitter, Facebook, Foursquare and YouTube.

January 5, 2012

Living Vertical: Project 365

"Our message is very simple. Diabetes is what you make of it. We each have the choice to make diabetes an obstacle that slows us down or a motivator that moves us forward. Be empowered through fitness and a better diet – not letting diabetes manage US is our personal responsibility." – Steve Richert, Project 365

Through social media, Calling All Types has made great connections with people with diabetes. Everyone we’ve met has been instrumental in working with us to grow the Calling All Types online health movement. Two of the people we’ve met are Stephen and Stefanie Richert. Stephen has been living with Type 1 diabetes since he was a child and Stefanie’s grandfather had Type 2 Diabetes. Together, they are embarking on a year-long journey, climbing and scaling mountains and cliffs across the United States, while making a documentary film about it called Living Vetical: Project 365. Their goal is to, “overcome the challenges of traveling, managing, and re-imagining what it means to get over diabetes.” When Calling All Types first learned about this project, we were immediately intrigued and reached out to the Richert’s to learn more. Stephen has been kind enough to answer a few questions about Project 365.

CallingAllTypes: What is Project 365? And what inspired you to launch this project?

Stephen: Project 365 is a 365 day climbing challenge which will take my wife Stefanie and I all across North America and into some of the wildest and most beautiful mountains ranges on the continent. We will be climbing every single day for an entire year, logging a vertical mile or more each month. We will climb mountains, rocks, cliffs and anything with vertical relief – there will be different obstacles from day to day and we will have to change up our approaches from time to time – but the goal always remains the same – getting to the top! It’s similar to managing diabetes – there are always a lot of adjustments to make, but the end result is what we are after.

Our inspiration for this project was initially as a fundraiser for cure research, but after looking into it more we felt that there were enough organizations covering that area. Overcoming diabetes is something that can be done even if you still have to inject your insulin and that taking on an extreme challenge like this would be a good way to demonstrate that – and filming it would be an interesting way to share that initiative with others.

CallingAllTypes: What is the message you want to send to other diabetes patients through this project?

Stephen: Our message is very simple. Diabetes is what you make of it. We each have the choice to make diabetes an obstacle that slows us down or a motivator that moves us forward. Be empowered through fitness and a better diet – not letting diabetes manage US is our personal responsibility.

We don’t expect everyone to be a climber after we are done – climbing is just one of many exciting ways for people to connect to nature through fitness – but we hope to inspire everyone to involve themselves in the natural world more and to accept more responsibility for their lifestyle as it relates to the management of diabetes. We are challenging ourselves and others to do more with less – naturally and to see how we can eat better, play better and use less – less stuff, less drugs, etc. and ultimately get more out of life.

CallingAllTypes: What has been your biggest challenge managing your diabetes while leading this project?

Stephen: Honestly, management is basically the same for me regardless what I am doing. By eating a plant based diet and avoiding starches and large amounts of carbs, I am able to use very little insulin and hypos are not severe or sudden and I am often able to anticipate them. Highs happen too, but I test four to six times a day – and that helps me gauge my sensitivity and I simply mitigate that by eating more or less to balance it out.

As irrational as it might sound, I do worry that somehow the success I have had managing diabetes these 13 years will suddenly evaporate and I will spiral off into the oblivion of uncontrollable BGs. Really, your mind is where the battle with diabetes occurs. Keeping a positive, confident attitude and seeing beyond the bumps in the road can be a lot harder than managing the sugar itself. Being in remote areas can be tough psychologically because you have to accept the fact that you are completely responsible for yourself – but accepting that responsibility on a day to day basis helps you acclimate mentally before you get out into the backcountry.

CallingAllTypes: What is your favorite mountain you’ve climbed so far and which one are you looking forward to climbing?

Stephen: I love the Sierra Nevada range in California – Cathedral Peak has been my favorite and I am most looking forward to climbing in the Purcell Mountains in British Columbia (also Mt Ranier in WA). I have to draw a distinction between “climbing” as a general term and “mountain climbing” or “mountaineering” as specific disciplines. Climbing simply implies going “up” and this can refer to shorter, more gymnastic routes on boulders, cliffs or climbing ice and snow in the mountains. We are going to be doing ALL types of climbing during Project 365 and look forward to showing the difference between them all – and their commonalities as we go along.

CallingAllTypes: What has surprised you the most about the positive reaction you have received to Project 365?

Stephen: We have gotten a lot of support from friends and relatives – and we have made great new friends even with the project in its infancy. We have been surprised at how many people have told us that we inspired them to make changes in their diet or their fitness routines. It all seems so normal to us that it’s really awesome to hear that it is reaching other people on that level!

CallingAllTypes: How has social media helped you manage your diabetes? And how do you think it can help others?

Stephen: Social media and diabetes management have always been completely separate concepts for me. I manage my diabetes by not making it a defining factor in my life, but rather normalizing it as part of a routine that I do in order to do more. Only recently did I even think to include anything about diabetes as part of my social media persona, in order to connect more with other people. I have always been a fairly analog type of person, viewing social media as more of a time-waster, a necessary evil.

I am now learning more about social media as it can be more of a positive and useful tool – basically it is a way to share information which can be very useful if that information is applied. I do think that there is a danger in simply getting so inundated with information that we become focused on the sharing instead of actually doing more with it. All the information in the world is useless without the commitment to implement and use it!

To learn more about Living Vertical: Project 365, check out their website at, www.livingvertical.com. Living Vertical: Project 365 is a 501c3 organization, and you can support this wonderful cause by clicking here. On behalf of the entire Calling All Types team, we’d like to thank Stephen for taking the time to share this story and we wish him and Stephanie the best of luck going forward.

The decision to participate is always yours and your feedback is always wanted. At CallingAllTypes, we believe finding the right online resources to better manage your diabetes should be a whole lot easier! So sign up and be a part of our growing online health movement. Once you’ve joined, stay connected with us through Twitter, Facebook, Foursquare and YouTube.