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Entries in Advocacy (48)

Thursday
Oct032013

Fifteen-Year-Old type I told, "We are not a hospital or charity"

Many years ago when I was in high school my best friend was diagnosed with type I diabetes. Mike took shots, carried insulin and needed to eat when he said that he needed to eat. Aside from those considerations, he never really spoke about having diabetes. We hung out together constantly, had meals, went on double dates; saw movies and the rest of what you would expect friends to do together. I was around Mike and his diabetes almost all of the time. 

Yet I didn’t know much about it.

Mike had so many diabetes related decisions to make and even though we were often together when he made them, I was lost when Arden was diagnosed. As the days after her diagnosis slowly turned into months, I never found myself thinking, “no problem, I remember this from Mike...”.  Nothing that I ever saw, heard or experienced with my friend prepared me to thrive or even merely exist with type I diabetes and I was as lost as the next person when it came to really understanding any of the intricacies of type I. It’s my experience with Mike that taught me to be patient with people who don’t understand diabetes. Sure, I still get annoyed and I certainly wish that the average person knew what Arden may one day need them to know in an emergency, but it’s just not reasonable to expect people who don’t live with type I second by second to understand it in a meaningful way.

Yesterday morning I saw a FaceBook post that Mike ‘liked’, it told the story of a fifteen-year-old boy with diabetes who was turned away at his local 7-Eleven when he asked the cashier to help him. I was instantly struck by the story and reached out to the boy’s mother, Katie Franklin. I asked Katie to share her families experience in the hopes that it would promote advocacy and awareness.

Tommy was riding his bike Monday after school when he experienced low blood glucose and because he was without money or supplies, he smartly went into a nearby 7-Eleven to ask for help. Katie tells me that Tommy asked the cashier for a fountain soda or candy because he has type I diabetes, his blood glucose was low and he feared that he was going to pass out. Katie says that Tommy doesn’t normally get so low that he feels this way so he knew that he was in a dire situation. The clerk, who was at a disadvantage because of a language barrier, declined by saying, “No”. The boy persisted and even showed the cashier his Medtronic insulin pump as proof of his need but the reveal of the pump didn’t change the clerk’s mind. Tommy left the store, rode his bike about a block and then called his mother at work; she rushed to him and found Tommy lying on the ground next to his bike. Tommy ate and felt better in time.

Katie drove directly to the 7-Eleven and asked to speak with the manager. Katie said that the manager told her that “we are not a hospital or charity” and when she tried to tell him that all her son needed was a twenty-five cent piece of candy and that it may have meant his very life, the manager walked her down the candy isle to show her that they don’t have candy that inexpensive. Katie, realizing she wasn’t getting anywhere with the manager, got the number for the corporate office and left the store. She was so incensed that she called the office from the store’s parking lot and spoke to the District Manager who promised to make sure that his stores understood type I better.

Katie was surprised when the owner of the 7-Eleven called her the next day because it wasn’t the DM that informed him of the disaster at his store. The owner found out about the incident the same way that I did, on the Internet. It’s important to be clear that the owner of the 7-Eleven was horrified at how his employees treated Tommy and his mother. Katie tells me that she found his apology to be sincere and that she is comfortable that he will take steps to educate his employees. The owner explained to Katie that he owns a number of 7-Elevens and that he will make certain that they all understand what diabetes is and how he want’s his employees to react when someone shows signs and symptoms. He even agreed when Katie suggested that a donation to the JDRF would go a long way toward making her feel better about what had transpired.

I know that Tommy’s story is horrifying to those of us who live with diabetes. It’s frightening to the parents of children with type I and I can only imagine how infuriating to the adults reading this who live with diabetes - but that’s not why I wanted to tell Tommy’s story.

I want to tell this story for two reasons. First because I know, thanks to my friend Mike, that everyone can’t understand type I diabetes but also because I think that we as a community are helped when we are remind periodically of that fact. I can personally see how the cashier, whose grasp of English and no experience with diabetes may have been confused when Tommy made his plea. I can’t however find a way to excuse the manager’s insensitivity and apparent lack of human kindness. I was heartened to hear from Katie that the storeowner understood what she was saying to him and offered what Katie characterized as an appropriately contrite apology. I say heartened because the owner’s reaction tells me that this story can find people who will be changed by it, that this story can make advocates out of people who previously didn’t understand type I diabetes.

The second reason that I think that Tommy’s story is valuable for us to hear is because of the reaction that some people online felt comfortable thrusting in Katie’s face. Please understand that her story was met with a ton of loving support but there were still some people that took the opportunity to chastise Katie for what they considered to be poor management of her son’s type I. What Katie said to me regarding those harsh comments needs to be heard by the parents of younger children living with type I. People told Katie that her son should never be without glucose and money and that it was a failing of her parenting that he had neither with him on Monday. Not having supplies probably seems foreign to the parents of small children because we tend to always have supplies with us but Katie told me a story that sounded all too possible and I can’t say that it won’t be all of our stories at some point in our lives. Tommy was diagnosed when he was thirteen and he’s only been living with type I for two and a half years. Katie has tried giving him money for emergencies, but he spends it. She’s tried to give him candy to carry, but he eats it... Tommy even likes the taste of glucose tablets so they get consumed as well. Katie is traversing a rocky road with her son and I can’t understand or condone anyone that would harshly judge her efforts. It can not be easy to help a fifteen-year-old boy come to terms with what diabetes demands of him. Shame on anyone who felt pompously that they knew better and then took it upon himself or herself to chastise Katie. 

It’s annoying yet understandable when the world at large doesn’t understand our lives but it’s a totally different feeling of sadness to learn that people can so easily, especially in a community like the one we all share, turn on another.

If we can’t give each another the benefit of the doubt and extend the kindness that we all know our lives need and deserve, how can we possible hope for that kindness and understanding from the populous at large?

 

I know that this was a long and heavy post so I want to end it with a story about Tommy that I think we can all appreciate and cheer for. Tommy diagnosed himself with diabetes. At thirteen years old he took to the Internet to search for his symptoms. Tommy told his mother that he wasn’t feeling well but before they could get to a doctor and driven by what I can only assume was the discomfort that a BG of 795 brings to a person, diagnosed himself during a school day and then posted on FaceBook that he thought he had type I diabetes. His mother saw her son online when he shouldn’t be, read his post and took him to the hospital where Tommy’s self diagnosis was sadly confirmed. I love the idea of a confident thirteen year old advocating for himself with the tools that he has at his disposal, almost as much as I admire a fifteen-year-old boy having the nerve to walk penniless into a 7-Eleven and ask for help. I think that Tommy has a lot to look forward to in his life, not just as a strong advocate for himself, but I have a feeling that his story will create advocates where there previously were none and renew the passion in those already advocating so hard. Thanks to Tommy and Katie there are a few less people in the world today who don’t understand.


For those around the world that aren't familiar with 7-Eleven, it is a convenience store chain that is mostly franchise owned and operated. Neither I nor the family is advocating any kind of protest involving the store or the company. We are both just trying to spread awareness and this story is a perfect example of why that is so very important. We are all only a few random occurrences away from being Tommy, we are all just a moment away from needed a stranger to be kind and to understand. It's up to us to bring awareness, because no one can or will tell our stories the way that we can.
Friday
Aug302013

Hey FDA, what about diabetes!?

Please take a moment to read diaTribe's message (below) to the FDA and then click on the link to their petition that asks the FDA to include diabetes in their upcoming 'patient meetings'.
Lend your voice and help to push this petition to 5,000 signatures so that our children's needs can be considered at the highest levels of decision making.
I hope you have a fantastic holiday weekend, thank you for your support!
Best,
Scott
From diaTribe:
"The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.
But not diabetes. That is unacceptable.
Four “slots” remain open (view the current list), and we want the FDA to add diabetes to its meeting docket for 2013.
According to the American Diabetes Association, nearly 26 million Americans have either type 1 or type 2 diabetes, and an additional 79 million have prediabetes. Those numbers are also increasing each year – the CDC estimates that if current trends continue, one in three US adults will have diabetes by 2050.
No one disputes that diabetes is one of America’s – and the world’s – most serious health epidemics. In 2012, more than one in five total US healthcare dollars was spent on diabetes, totaling $245 billion, and the government covered 62% of those costs, meaning everyone is paying for this epidemic. Despite growing needs, research dollars have also leveled off.
New therapies need to be investigated, tested, and brought to market, and as part of that process, the FDA must understand the daily challenges that patients face.
We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.
Our voices need to be heard.

 

Thank you very much."
Wednesday
Aug212013

Join The Strip Safely Tweet-In, August 21st at 8pm EST

Strip Safely is headed by my friend and DOC legend, Bennet Dunlap. In my opinion, when Bennet says something is important for me to pay attention to... it's important. I hope you can send some tweets tonight! - Best, Scott

 

Taken from www.stripsafely.com


 

On Wednesday, August 21st beginning at 8pm Eastern, we are staging a StripSafely Tweet-In, asking Congress to send aides to the upcoming Diabetes Technology Meeting on September 9th. 

Please join us and add your voice. 

We’ve made it easy. Simply go to the Let’s Tweet page of Stripsafely.com, find your state and click the link listed next to your senators and congressmen. We’ve already created the message – you just need to tweet it out. (Don’t forget the leadership at the top of the page – we can all tweet to them!)

Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. Include the hash tag #StripSafely. Feel free to use this link to our letter in your tweets.

Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for our health.

Thursday
Aug082013

Arden's Day is Six Years Old 

Let's celebrate... It's the sixth anniversary of Arden's Day!

At exactly 3 AM on August 16, 2007, I posted my first blog entry on the Internet and "Decided to Share" began my online life as a type I diabetes advocate. I had no idea if anyone would ever read my little blog and there were times that I seriously considered closing Arden's Day because I doubted that I was adding a needed voice to the community. Well, it's six years later and I couldn't be happier that I made the decision to keep blogging, because so much has happened since that overwhelmed and exhausted guy first said these words...

I can’t sleep... Haven’t really been able to for about a year now.  On August 22nd Arden will be a Type I diabetic for one year.  I’m going to try and relay to all of you what Arden’s disease is, how it effects her and how it effects our family.  My goal is to give you a glimpse into our life so that you can better understand Type I diabetes... My hope is that the understanding will result in your advocacy.

Starting now I’ll be updating this site as much as is needed to bring you into all of this as completely as possible.  I’ll be taking pictures and video as much as possible.  I think diabetes is one of those things you need to feel to understand, an explanation just doesn’t do it justice.  It’s a much more visceral experience then you may think. That picture (above) is from just now (3:00 am), Arden just called me from her bed.  She wanted to lay down with us.  I checked her Blood Glucose (from here on out known as BG) and it was good.  Well not really good, high actually about 120 - 150 points higher then a non-diabetics would be at 3 AM but good for our purposes. Don’t worry it’ll all start making sense to you soon...  Please use the “Subscribe” button on the ‘Daddy’s Blog’ page to stay up-to-the-minute.  I really think that being updated every-time something happens will help bring you into the process. Please share this link with any and everyone you know.  Off to get some sleep...

Since that day, I've spoken to Congressmen and Senators, raised funds for the JDRF, written a book and met the most wonderful people. I could probably make a list as long as my arm of amazing things that have happened since I began to blog, but if I had to pick a favorite... it would be easy to choose. I am still, to this day, amazed at how much sharing our story helps others. Honestly, when I began six years ago, I never expected that. Moreover, I'm simply stunned by how powerfully you all return the love. That dynamic is, without a doubt, the most rewarding part of all of this. The relationship that we all have is one of the most uniquely human experiences that I've ever been a part of. Starting Arden's Day in 2007 was, without exaggeration, a life changing moment for me and that feels celebration worthy. Plus, six years is quite an accomplishment for a blog and I'm genuinely very proud to be able to lay claim to six years of diabetes blogging.

You are reading the 568th post that I've written for Arden's Day and the wonderful feeling that comes from sharing with you has not diminished one bit since 2007. It's my pleasure to be able to say that I am, in some small way, a part of something as wonderful as the diabetes online community.

You must be wondering why I am posting about an anniversary eight days before it happens. Easy answer... So you can be ready for what's happening next week. Stuff like...

Lauren's Hope is generously giving away some medical ID swagerrificness in celebration of Arden's Day's sixth anniversary!

Spry Publishing has donated a few copies of my book, Life Is Short, Laundry Is Eternal that I'll be signing and giving away. 

I'll be asking for your thoughts on what your JDRF Walk means to you and your family. A few days later, Arden will randomly select one of your comments and my family will make a $50 donation to your walk efforts.

I'll highlight one of my favorite posts from the past every day next week and reflect on them from today's perspective.

...and an announcement that includes giving away multiple copies of the newest Coco book from the Lilly/Disney collaboration, 'Coco's First Sleepover'.

I'm excited for Monday to arrive and hope that you are too! In the meantime, enjoy your weekend and good luck getting that Flintstones song out of your head! 

Tuesday
May212013

Oklahoma Tornado

Paul Hellstern - Oklahoma APLast night this photo of two teachers leading children to safety brought tears to my eyes and sent me racing to my computer to make a donation to the American Red Cross and the Salvation Army.

Today, I've preempted my blog piece about delivering insulin in difficult carb counting situations to pass on information on how you can send relief to the people whose lives where destroyed in yesterday's tornado. I encourage you to make a donation of any size if you are able and please make your friends, both online and IRL, aware of how easy it is to send help. 

 

American Red Cross

Text REDCROSS to 90999 to give $10 to American Red Cross Disaster Relief, donate online, or donate by phone at 1-800-RED CROSS.

 

Salvation Army

Text STORM to 80888 to contribute $10 to the Salvation Army's relief efforts or make a donation by phone at 1-800-SAL-ARMY. If you're sending a check make sure you put the words "Oklahoma Tornado Relief" on the check, and mail it to: The Salvation Army, P.O. Box 12600, Oklahoma City, OK., 73157. Online donations are accepted here.