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Entries in community (3)

Tuesday
Dec032013

diaTribe Petition: Please help

from the diaTribe petition at change.org

At a recent meeting of Oregon’s Health Evidence Review Commission (HERC), the state panel recommended reducing access to test strips for people with type 2 diabetes on the Medicaid-funded Oregon Health Plan (OHP). A new plan would severely restrict access to strips for type 2 patients unless they are newly diagnosed, take insulin, or meet a few other special requirements. For people not taking insulin – which covers the vast majority, about 70% of all type 2 patients – those with an A1c above 8.0% would be entitled to one test strip per week, while those with an A1c below 8.0% would not be provided with any test strips at all. 

This recommendation would severly limit test strips and set a dangerous precedent for other states looking to cut overall health care costs. It's difficult to understand how the HERC imagines people with an A1c below 8.0% will manage their diabetes without test strips, and a test strip every week is hardly meaningful for patients or providers. Furthermore, any cost reductions will likely be more than canceled out in the long-term due to increased complications, hospital visits, and operations that inevitably folow poor control. The decision is currently scheduled for December 5. If you are a person with diabetes or a caregiver, we encourage you to sign this petition and write to Oregon Health Authority’s Director Dr. Bruce Goldberg and the members of the HERC about the importance of having access to test strips and self-monitoring blood glucose.


Read more about the issue and what you can do at diaTribe.org 

 

Add your name to the petition


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.
Monday
Aug122013

Tell Me About Your JDRF Walk

I'd like to begin the Arden's Day Anniversary Week celebration on a charitable note. I thought it would be nice if we shared what we love most about our JDRF walk experiences. Everyone who shares their thoughts in the comment section (under this post) will be entered into a drawing. Later, at the end of the week, Arden will pick one winner and my family will make a $50 donation to your walk effort! You can enter up until August 10, 2013 at 11:59PM estDue to a typo in the entry date (Was originally listed as 8/10/13) the giveaway has been extended. Entries now excepted until August 18, 2013 at 11:59PM EST

I'll get us started...

There are a number of great reasons to walk with your local JDRF chapter and while I'm certain that each of you will have a different 'favorite' part to share, mine is without a doubt the sense of community that I instantly felt when I realized that everyone that was walking either had type I diabetes or loved someone who did.

That feeling helped to buoy me for a number of years after Arden's diagnosis and while I still enjoy that feeling, my reason for returning each year is no longer the same. Today, I walk so that there will be a community for others to draw support from because I know how much seeing that crowd of people meant to me. It's was the first time after Arden was diagnosed that I felt less alone. That's why I walk!

What's you favorite part of walking for the JDRF?

Arden (age 2) and Kelly at our first walk - 2006

 

other anniversary posts and giveaways

  'Anniversary Week Continues: Books and Video' - A video we made in 2008 to support type I advocacy and a book giveaway.

'Who wants a copy of Coco's First Sleepover?' - I have ten copies of the new Coco book to giveaway