The Blood Won't Come Out: Day of Diabetes Deeper Look

This post is an indepth look at a 20-30 minute window from our #DayOfDiabetes.

Last night Arden's DexCom transmitter sent a message that it needed to be replaced (That is expected as it is over a year old).

Today, during a moment that I thought would be calm, I called DexCom to order a new one. DexCom told me that I needed to call EdgePark Medical Supply.

I called Edgepark. Long explanation. Was transferred.

Arden texts that her CGM is ready for calibration - I tell her to test and put number in.

Someone picks up at Edgepark. Long explanation. Was transferred again.

Arden texts, "The blood won't come out, I did it like 12 times".

So now I'm talking to Edgepark and texting with Arden because for the first time in over seven years of having type I diabetes. She can't get a blood drop no matter how hard she tries.

Edgepark is explaining my insurance, the guy is nice and making small talk but I need him to shut up because I can sense that Arden is getting upset. 

"Still not working, not going to the nurse" - Arden's Text

I tell her to try different fingers, different sides, to squeeze her arm toward her hand and then her finger toward the tip. Nothing is working.

"221" - "I got it dad but I had to do the middle finger and it hurts" - Arden's Text

I tell her that I'm proud of her by text while confirming our address with the Edgepark CSR and while that is all happening, no shit, Arden's timer for lunch goes off.

Cell phone in my left hand, telephone in my right, credit card on the counter, lump in my throat because Arden is upset yet unwilling to quit and the alarm goes off. I laughed... "At least we don't have to test", I text...

That's a #DayOfDiabetes all packed into 20 minutes.

Fool proof tips for handling Halloween with Diabetes

Every year, just before Halloween, I receive a few inquiries about writing a freelance piece about 'How to handle Halloween with Diabetes' and every year I politely decline to write about that topic. Why... because I think it adds unnecessarily, to the hysteria that exists online surrounding this non-issue. However today I'm feeling kinda giddy... So without any further ado, here are the tried and true ways that we handle Halloween in our house, you may want to write them down so you don't forget. 

• We count carbs and cover them with insulin.
• Due to the nature of how some simple sugars react to the insulin, we test more frequently.
• Walking can decrease a BG so you'll need to carry some sugar... hey wait a second.

Seriously, that's all we do though having a DexCom CGM does help. Tell you what, just so you don't feel ripped off for clicking on this blog entry, here's the stuff I would have written if I excepted those writing jobs. 

• Trust yourself, you know what you're doing.
• Practice moderation.
• Test a little extra.
• Get home with enough time to allow active insulin to finish before bed.
• Check on your little ghoul a few times after they go to bed to make sure there's no crazy drop in BG.
• Relax and eat your kid's candy so you don't have to deal with this crap tomorrow.

Okay, well, that's it, except to say this to my freelance suitors... aren't you glad you didn't pay for that!?

Happy Halloween and don't forget to log your BGs and exercise with The Big Blue Test!

Update on Monday, November 25, 2013 at 10:40AM by Scott Benner

Finally getting around to post a picture of Arden as a zombie.

Sure, you can go to the Selena Gomez concert

If you read Arden's Day with any frequency you know that we manage Arden's Bgs with text messages while she is in school, at a friend's house and every other time that she isn't in our physical space. I've written how the process has eliminated so many issues, lowered her A1c and making us all to feel more independent are but two. I am genuinely excited to tell you that we have recently added, "Go to a concert" to that list! Now you may be thinking that there is a world of difference between managing type I from across town and being an hour away in a stadium singing along with the former Wizard of Waverly Place, but you know what - not so much. It turns out that the biggest hurdle when considering the difference between the two situations is realizing that there aren't any.

I have two main concerns when Arden isn't with me. Loss of communication and An unexpected low BG. All that remains is manageable with pre planning. Supplies, food, and juice is no issue to pack and have at the ready. A well thought out testing schedule eliminates most surprise BGs and Arden's DexCom G4 finds the ones that slip through the cracks. Of course no one can plan for a significant BG drop that defies logic, that possibility is the diabetes equivalent of having a car accident - you wear your seatbelt, drive safely and hope for the best.

I received a call asking if Arden could go to the Selena Gomez concert with one of her best friends, I didn't hesitate to say, "Yes!". One year ago the mom on the other end of the phone wouldn't have been able to finish her sentence before I said, "Thank you but no". But so much has changed in the last year. Now when a person that I trust calls and asks for Arden to accompany them for an evening, I can say yes with less trepidation and that makes me very happy for Arden.

Here's how I handled Arden going to the concert...

First, the mother and I had a nice lunch together the week before the event. Even though Arden goes to their house for play dates, we still manage through texts while she is there so the mom doesn't have a lot of interaction with diabetes. She understood the basics and knows how to react in an emergency but the concert was going to require me to advance her understanding of type I diabetes. 

We spoke about all emergency possibilities in very, very real terms. I explained that I needed her to understand all that could happen, even though the likelihood of it happening was extremely remote. 

I said thank you for her willingness to except the extra responsibility and went about the seemingly impossible task of preparing a person for an evening with type I without overwhelming or causing them to obsess during the event. The last thing I wanted was for the extra considerations to take away from the experience that she was going to have with her own daughter.

We spoke about supplies, testing times, CGM check ins and how to talk to the security guys in a way that makes bringing food and drinks into the venue easy. We talked about panic situations, CGM arrows and how to use glucose gel. I explained low blood glucose seizures and that I was going to discreetly slip her the glucose gel because the sight of it makes Arden anxious.

I couldn't have been prouder of Arden and her friend's mother when they pulled out of our driveway for the concert. The conversations that we had and the topics that they had to consider, just to go to a concert, were more than a nine year old and her friend's mom should be asked to think about - but they did it. When Arden got into the car with her friends she was smiling just as a little girl on her way to a concert should. Thankfully, her BG's were rather uneventful during the evening, she required two maintenance boluses during the show (Adrenaline I imagine)  and a juice box on the ride home (No more Adrenaline) but other than that, easy sailing. When she walked through the door at almost eleven, her BG was 104 (DexCom had the BG at 74). Success!

Never once that night did I have to speak with the adult who accompanied Arden about anything related to diabetes. Actually, at one point she sent me a text and asked, "Is there anything I need to be doing?".

The bag of supplies I sent was returned to us unopened. Arden didn't need the extra OmniPods, insulin, needles or food. In fact, she would have been just fine had I not sent any extra supplies, all she needed was the juice box that she always carries in her bag.

I want this story to illustrate that everything is possible with type I, but what I don't want is to make you feel like planning ahead isn't necessary. This trip included a number of conversations, pre planning, a well packed bag and a little luck. Actually, to show you how much luck - Arden's OmniPod experienced an error the morning after the concert and I had to go to school and change it around 8:30 am. Can you imagine if the pod would have shut down during the concert? I could, and that's why we had a plan for how to handle that situation, should it arise. We planned for every conceivable possibility and talked about each ahead of time so that if they did occur, no one would be caught off guard or be unprepared for what to do next. 

Arden popped out of bed for school the next day and put on her concert t-shirt still smiling from the evening before -- suddenly, the effort that it took to get to that moment felt like no effort at all. 

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.

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.