Family Matters with Nancy Redd: HuffPostLive

I wish that I could hop into a time machine and go back to high school. I'd love to find the teachers (There were many) who told me that I talked too much. I could let them know that one day, HuffPostLive would call to ask if I could be a panelist on their inaugural edition of 'Family Matters'. I knew I was practicing for something ;)

Update on Tuesday, October 22, 2013 at 10:44AM by Scott Benner

Gravity

It took over a week before it hit me as to why I liked the movie Gravity so much - because it reminded me of living with type I diabetes, because I am comfortable with jumping from one situation to the next.

I won't ruin the movie for you by exposing specific plot points - This paragraph will include some basic information but nothing that isn't inferred in the movie's trailer. The film begins with astronauts in space fixing the Hubble telescope, almost immediately, some bad stuff happens and that stuff leaves Sandra Bullock drifting for her life. Every time poor Sandy completes a dangerous and nearly impossible task that she believes will save her, some other amazingly difficult obstacle appears and she must begin again. Each time she must conquer the new obstacle without so much as a moment to take a deep breath. I very much enjoyed that aspect of the film, the "out of the frying pan" and into another frying pan aspect, that is. I found myself strongly identifying with it and the character's insistence on not giving up. 

During the ride home my family, as we always do, discussed what we liked or didn't like about the movie. I found myself saying that I enjoyed the movie, yes the special effects were great and I even liked the use of 3-D but what I enjoyed most was that the plot felt like real life to me. It felt like the way I live. Not the part about being in space or the slightly over the top scenarios that the characters found themselves in. It was the immediacy of the peril and the unrelenting nature of the situations. Type I diabetes is many things, but perhaps more than the rest, it's persistence and constant feeling of presence that it creates is, for me, it's define characteristic. Some days dealing with diabetes feels like being a tired swimmer whose trying to crawl to shore. Just as we wipe the salt from our eyes and spit out the remainder of the last onslaught, another wave appears from the calm and knocks us over. 

I loved the way that the main character faced each new challenge with the same determination as she had for the last. It was the message that if you want to live, you do this thing. There is no time to complain, not a moment to spare and you can afford to feel sorry or yourself - living is moving, reacting and doing. I feel like that's our life and I guess since I didn't hate the movie, I must finally be comfortable with this narrative as my reality. It feels good to look for the next path to follow when a roadblock appears, I much prefer that feeling of "I can do this", to the weight of, "Oh no, not something else". 

Expired Glucagon

I think that we can all agree that the best Glucagon is the one that you never open. I understand how uplifting it is to toss a Glucagon kit into the trash, nothing feels better than knowing that it was never opened - but what if I told you that there was something better? Something easy and awesome that you can do with your expired Glucagon?

Practice. Practice. Practice.

My best advice for what to do with your expired kits, practice. Parents, siblings, friends and relatives will all benefit from being able to learn how to help in a severe low blood glucose situation. I know that we all hope and want to believe that we will never have to use Glucagon in an emergency situation, but just in case, the first time you hold one shouldn't be during a seizure. 

This I know from experience.

Not long after Arden's diagnosis back in 2006 we tried to eat Chinese food for the first time since diabetes entered our lives and well, that didn't go very well. I injected too much insulin and about two hours later, Arden was having a seizure. We placed Arden on the floor, Cole called 911 and Kelly began to rub glucose gel into Arden's cheek while I was frozen and staring at the Glucagon. "I never thought I was going to need to know how to use it", I mumbled. Thankfully, the gel Kelly applied brought Arden out of the seizure but I'll never forget the sickening feeling of having the tools to help my daughter in my hands but not the knowledge of how to use them.

So practice with your expired Glucagon until it doesn't feel awkward. Then once everyone in your life is proficient -- donate them to your child's school nurse or a local school. 

Glucagon is the only thing in the world that I buy hoping that I will waste, but you don't have to throw it away. School nurses, Glucagon proxies and other school personnel will be grateful for the opportunity to get comfortable with the process. Speak with your school nurse and ask if an expired Glucagon kit is something that they'd be interested in having and you'll feel twice the pleasure the next time a kit expires.

Helping Children with Diabetes Gain Independence Part 3

If you read part one or two you can skip this little description and move on to the post...

So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!

See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 3 of my 6 part series on gaining independence through technology.

In my last post, Helping Children with Diabetes Gain Independence Part 2: Texting Diabetes, I promised to tell you about Arden’s A1C. There are a number of things that I attribute to the reduction of Arden’s A1C, including:

• The support of friends, family and teachers

• The OmniPod insulin pump

• Finding the correct insulin dosing for Arden 

• Utilizing Continuous Glucose Monitoring (CGM)

• Taking advantage of overnight monitoring (no food makes it easier)

• The Diabetes Online Community

• Being aggressive with high blood glucose levels

• Making good food choices

• The way that we manage diabetes while Arden is at school

Our children are at school for eight hours a day and that is a substantial chunk of time. In the past, Arden would eat or take insulin and then not see the nurse again for hours, scheduling her next check around the time we expected the insulin action to compete. So if there was a miscalculation of insulin at lunch or some other anomaly, Arden would go hours with an elevated blood glucose level. By removing other people from her diabetes management process at school,we also removed the constraints of relying on those people’s schedules. Arden no longer only considers her diabetes at 10:00 AM, 12:00 PM and 3:00 PM. Now we address diabetes-related issues as they arise and have the ability to make small adjustments. Being able to bump a low blood glucose and reassess in 20 minutes is far more effective than taking in a predetermined amount of carbs, hoping for the best and addressing any high blood glucose values that may arise hours later.

Similarly, if a mealtime bolus doesn’t work the way we expect, Arden’s CGM tells us her blood glucose is on the rise and she instantly texts me. I couldn’t expect the nurse to be comfortable giving more insulin an hour after a meal, but I am. I know Arden and how she reacts to different situations. I have the full knowledge of her diabetes history in my head. I can make adjustments on the fly, just as she will be able to do one day when we transition away from me being involved with her diabetes care every moment.

This access to Arden during the eight hours of each school day allows me to have the same control I do when she is with me, because honestly… it’s like I’m there.

Now, I promised you information on her A1C, so I better get to it!

All of the things I listed above are, in my opinion, critical to Arden’s A1C. I love the fact that she sleeps for a third of every day; diabetes management is so much easier then when there’s no food involved. There are two reasons I was able to let go of my fear of nights: the OmniPod and CGM technology. Using an insulin pump is key, because it allows for the reduction or temporary suspension of background insulin. For me, manipulating temporary basal rates is the essence of controlling borderline lows throughout the day – and especially overnight. The CGM lets me know if my plan hasn’t worked out and that’s already a third of the day covered.

The part of the day that she is with me and awake is the toughest for me. Handling things like big meals at inopportune times, running to sports and homework can be challenging. And I can get tired and unfocused in the late afternoon.

Arden’s A1C was in the nines when she was diagnosed. It languished in the mid-eights for years. I finally began to combine all of my diabetes theories into a cohesive plan in the early part of 2012 and we saw a reduction to 7.8. At the beginning of this school year we managed to get that number to 7.5. I was happy! Then the new school plan went into effect, which allows me to happily tell you two things today that you may not believe…

Arden has NEVER visited the nurse’s office for a diabetes related issue since we started our texting system and her A1C is 6.5.

Update on Thursday, October 10, 2013 at 10:12AM by Scott Benner

This post was written over four months ago. Since then Arden's A1c has been tested again and was 6.7.

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.