An Unexpected Conversation
Arden didn't want to see 'The Hobbit: An Unexpected Journey' but the rest of us did. She told us that she would come anyway and, "take a nap if I get bored". It wasn't long after she snacked on some popcorn and chips that Arden shifted herself around in her seat, raised the arm rest and laid her head on Kelly's leg. Arden probably slept through the last ninety minutes of the movie, her BG from the snacking didn't take the same break.
I had Arden's DexCom receiver under my leg and was watching it for a rise in her BG. I rarely seem to cover those movie snacks in a way that completely holds down a spike. I probably checked the CGM once every twenty minutes, setting one temp basal over the first hour.
About thirty minutes before the movie ended Arden's CGM shook, she was going to need another bolus. Before I bolused I wanted to go back through the recent insulin delivery history so that I could make a good decision, I was trying to avoid testing Arden in the theater while she was sleeping. I had a pretty good feel for what I wanted to do but felt like it was important to review the last two hours before I pushed any buttons. I must have gotten engrossed in the data because I unknowingly brought the PDM up to my face to read the numbers. When I did the barrier that my seat and legs were providing against the light was lost, the PDM screen was now visible to others in the theater.
Before I could realize what I had done, an angry female voice emanating from my left spoke, "put that phone away, it's rude".
The instant that her words reached my brain I was enraged. My chest felt as if my heart had turned to molten lava and my mind was begging me to release the mixture and drown her with it. I'm embarrassed to tell you how insanely angry I was. My heart rated doubled, I could feel the adrenaline coursing through me. I instantly had a genuine desire to eviscerate the person that spoke in the dark. I wanted to rip her open and pour the hot pain that was boiling in my chest into hers... so that she would know how terribly misguided her words were.
Except that she was right...
I was that guy holding a bright light in a pitch black movie theater. I was interrupting the people around me. The woman who spoke made a completely reasonable assumption that I was holding my cell phone, I probably would have done the same thing. I knew that intellectually, but I still wanted to scream at her. I had to use breathing exercises to let the anger out of my chest. It took me a long few minutes to ride out the adrenaline. I kept thinking about her words as I waited for my primal response to dissipate, thinking of everything that I wanted to scream at her. I thought about it over and over until I could absorb and believe the truth. I was so blinded by anger and my desiree to defend Arden that I was unable to give my thoughts enough clout to overcome my rage. Eventually, my better judgement won out and I began to allow the truth to rule this moment, I was being unreasonable. When I was finally able to relieve myself of the rage that filled me, I was flooded with the notion that, "If she only knew, her reaction would be so very different... if she just understood that Arden has diabetes".
When the movie ended I checked with my son to make sure that the woman sitting two seats from him was the one who spoke. He told me that it was, I immediately stood up and approached her. "Excuse me, can I just have a few seconds of your time", I said. She wasn't sure what to make of my request and so I sat in the empty seat between her and Cole and began to speak before she could answer. "It wasn't a cell phone... it was my daughter's insulin pump, she has type I diabetes".
She calmly replied with an air of superiority, "You still should have taken it outside"...
Well, that didn't sit well with me as perhaps you can imagine. I politely but sternly asked her if I should have taken my daughter outside to give her the insulin that keeps her alive. My displeasure was on display.
To her credit she rethought her statement and recanted it, making up an only half-believable excuse about not understanding what I initially said. If I'm being honest, she was on her guard as I approached and I understood that her first words were defensive.
I explained again, apologized for not doing a better job of quelling the light and thought that, with that, we would part ways. Except that she seemed hell bent on making her point about rude people and their cell phones. It seemed that she was beginning to feel badly about our misunderstanding and wanted to legitimize her response. She began to defend her self but I cut her off before she could get on her soap box, and said this...
"If I can just have thirty more seconds of your time. There is a piece of writing that I love, it's a speech called 'This Is Water', the author makes a number of points in the text, one of them is this. We all see people everyday who drive like assholes. Chances are that most of them are actually assholes, but one of them must have a good reason for speeding and switching lanes too much, one of them must have an emergency that we could all understand. The author makes the point that you can spend your life assuming that those people are assholes, or you can make the humane choice to believe that they have a really good reason for driving that way. I choose to think the latter and I hope that this experience helps you to make the same decision next time something like this happens to you."
Now I must tell all of you that I am not normally the guy that lends strangers advice that they don't want and didn't ask for. I was driven in this moment by the desire to not just defend Arden but each and every one of you. Maybe I was out of line, I think that I was, but people living with diabetes deserve a little bit of... of what? We deserve a little extra compassion. I know that because I live this life, the same life that you live. As I was speaking to her my own words reminded me that everyone has diabetes sometimes, that we all need a little extra compassion once and a while. That acting with concern instead of contempt is one of the most basic and loving human gifts. Too often we respond to others pain with judgement, and if my experience on this night is any indication, we do so because of the judgment that we perceive has been previously levied upon us.
I apologized to the woman again for impugning her, I insulted her by insinuating that she saw the drivers as assholes. Perhaps she doesn't, maybe she's just been to one too many movies where someone pulled out their phone. Either way, I said my peace, defended my daughter and tried to be an advocate for, not just you, but for everyone that could use a break once and a while. Maybe I thought, maybe next time she'll find the strength to hold her boiling lava inside and approach her next issue as I did. Maybe I started a positive wave that will carry into the future. I hoped that my actions would be the start of more human kindness - but maybe she just thought I was an asshole.
When we got to the car Kelly asked me why I was talking to the people next to Cole. I told her this story and then I told my children this. "When I was young I would have yelled at that woman, I would have embarrassed her the way that she embarrassed me, I would have mocked her and verbally punished her for daring to speak up for herself. I grew up just outside of Philadelphia and I wasn't raised to take shit from people, even if I deserved it... I'm glad that I grew up. I hope that you can control yourself when this happens to you one day, and it will." I told them how difficult that it was for me to maintain my composure and I did my best to describe how angry and defensive of Arden I felt when she spoke. I really hoped that my kids got something more out of this evening then popcorn and a movie (and a nap). I'm sharing my experience with you for the exact same reason.
The woman thanked me for taking the time to explain, we shook hands and wished each other a Happy New Year. I think that she was glad that I spoke to her, I at least hope that she was... I know that I was.
Everyone needs a break sometimes... Do your best to remind yourself of that in 2013. It's not always true that the ignorance you face has understandable beginnings, but it does you far more personal damage to believe the worst in people and the assumption gets us no where, it actually holds us back. When you give others the benefit of the doubt, you may be starting a kindness that will one day find it's way back to you or another person whose life is not that much different from ours.
Happy New Year!
All my best, Scott
Pooh. Gilly. Bear.
Arden has been fighting off a cold for the last week and her BGs have been low overnight as a consequence. We've used up more juice boxes this week then in a literal year of overnights prior. I'm beginning to drag a little bit from the experience but Arden, despite her distaste for drinking juice when she isn't thirsty, is taking it all in stride.
I can't seem to avoid these lows, I've tried everything. By the time this story happened I had resolved myself to the fact that we would be dealing with low overnight BGs until her cold passes.
But anyway... last Friday we went to the movies and saw Monsters, Inc. Many hours after the movie ended in the wee hours of the morning, Arden's CGM alarmed and woke me. I checked her DexCom receiver and saw that her BG had fallen well below the low threshold, so I tested. Arden needed to drink a juice.
I was able to wake Arden with very little issue and she began to drink. I held my left hand behind her back at one point because she was having trouble holding herself up. When she finished the juice she handed me the empty box and said, "Thanks poohgully bear". Her words seemed without meaning, I was startled by her jumbled communication. Perhaps her low blood glucose was more severe then the Dex and meter indicated. I was worried that she was becoming incoherent. I asked her, "what did you just say?" and without missing a beat, she smiled and said again, "Thanks poohgully bear". I responded this time, "Arden, I'm sorry but I don't know what poohgully bear means. It sounds to me like you are saying, Pooh Gilly Bear".
"No, not poohgully bear", she said. Then she spoke the words again only slower saying, "Poohgully bear". In this instant Arden and I had slipped into an Abbot and Costello routine. I was sitting on her bedside saying, "pooh gilly bear" and she was responding with words that sounded, to me, exactly like what I was saying. Finally I realized that everything else about our conversation, sans poohgully bear, was very coherent so I stopped worrying that her BG was much lower then indicated. We agreed that I wasn't going to understand her message and we said goodnight. I told ther that she could go to sleep, adding, "I'll be back to check on you in about fifeteen minutes".
Before I walked out, I couldn't help it, I asked one last time "poohgully bear?". Her little voice answered back in the darkness, this time very, very slowly, "pooh gully bear". I laughed and said, "Arden I'm hearing pooh and bear but I just can't make out the middle word... are you saying gilly?" She answered only, "Never mind" and then giggled. I left the room expecting to never know.
Her BG leveled out some time around 3 am...
The next morning Arden and I were making breakfast together while Cole and Kelly slept in. I brought up our conversation because I wanted to know, even though I imagined that she wouldn't remember. "Any idea what 'thanks poohgully bear' means" I asked.
Then Arden said this, "Remember last night we saw Monsters, Inc., it's what Celia calls Mike... poohgully bear".
I laughed so hard that I thought I was going to break a rib and then replied, "do you mean Googley Bear?".
"Oh, is that what she calls him... sounded like Poohgully Bear to me".
We smiled at each other and then I couldn't help but to walk over and gave her a big hug.
Most low BG stories aren't any fun, but this one, this one needed to be shared.
Click the image to hear Celia
Update
on 2013-03-19 01:46 by Scott Benner
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
Update
on 2013-03-19 01:46 by Scott Benner
My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook
I'm the Cornerback
I found myself yesterday explaining to a friend some things about diabetes. During the conversation I mentioned that Arden's BGs have been all over the place for the last few days. They were high yesterday morning and I couldn't get them to budge. Then, as if someone flipped a switch, they were suddenly perfect for the remainder of the day. Early the next morning after some late night Christmas wrapping, I was heading to bed and I checked on Arden for what I thought would be one last time. Arden's CGM told me that her BG had begun to fall fifteen minutes before I arrived in her room. I tried to stop it with a temp basal but I was concerned that I was too late, so I settled in and waited to see where the bottom of this drop was going to be. Maybe, I hoped, maybe I won't have to wake her but I knew in the back of my mind that I was going to be chasing this BG all night.
The next day as I was explaining to my friend that managing diabetes is a lot like playing cornerback in the NFL, I realized that I was correct in more then a just a few ways. When you play football as a defensive player there is one truth, no matter what you do, or how much you practice, the guy you are defending is always one step ahead. In this example, the wide receiver (diabetes) has a head start. You may be just as fast and even more nimble but he always has the unfair advantage of knowing the route he plans to run while you are left to try and keep up. There are two ways to cover a wide receiver, you can be smart or you can be flashy. A smart corner keeps up with his opponent, always staying within reach. He reads tells in the receiver's body language, looks for clues in the alignment of the offense and then he let's his skill and talent guide him to a place on the field were the final act of their battle takes place. It's in that spot where, with luck, he'll be able to react in time to stop the receiver from catching the ball.
All the receiver wants in the world is to get away from his defender so he can make a catch, score and beat the defender. The cornerback, being a defensively minded participant in the game, he just wants to stop the receiver from advancing more then anything else. When a corner fails at his job pundits says he was burned, because that is exactly what it feels like. It's a terrible feeling to make your move and miss the ball. Your momentum takes your body out of position, you are no longer in a place to effect the play. You give chase, but you know just as everyone else looking on does, that you'll never catch back up to the man with the ball. The man you were charged with stopping. I've stood on a football field and watched my man, the guy I know I can beat, run away. He's outsmarted me, out performed me, he's beaten me. I know it, everyone else knows it, but what hurts the most is that he knows.
That's were the similarities between football and diabetes stop. Diabetes doesn't know it just beat me, but I still feel burned. Eventually I gave up that night and woke Arden so she could drink some juice. Then I chased her BG until the early hours of the morning.
Some times when I'm able to keep up with diabetes and my skills take over, I make an awesome play on the ball. I've knocked a few passes, that were going for touchdowns, out of the air. Once and a while, when unleash my flashy, I pick one off and take it back for six.
Each morning when Arden wakes up, I'm renewed by the look on her face and ready to run with diabetes again. We stand across from one another, look deep into each other's souls and wait in the intense silence for the ball to be snapped. I hope that one day, someone will walk on the field, take their ball and go home. Until then, I scrap with the guy that lines up across from me, doesn't matter what number is on his chest - 56, 347, doesn't matter. I know what he wants, but I have a surprise for my opponent... I want it more.
DSMA Live: Parents Talk (feat. me) Audio
Apparently I have a lot of thoughts on a multitude of subjects and DSMA Live 'Rents, was a perfect place to share them. I'm confident that you will agree... my appearance is not as entertaining as 'The Avengers' but I can promise this, it is 200 times better, then 80% of ABC's comedy TV lineup. Enough build up, here's DSMA Live: Parents Talk from December 17, 2012.
DSMA Live and DSMA Live Parents Talk is also available on iTunes and on the DSMA website. Please consider adding a DSMA Twibbon to your avatar and/or making a donation to help DSMA obtain tax exempt status.
New OmniPod Pictures and Information
It's official! The next generation of the OmniPod Insulin Management System has been approved by the FDA!
I've just finished speaking with Sean Gallagher, Senior Director, Marketing for Insulet, person living with type I diabetes and OmniPod user. We spoke for a bit this afternoon and I have some fresh information about the new Pods and PDM to share.
The name remains the same: You won't be wearing the OmniPod G2 or OmniPod Lite. Just good old OmniPod.
Pricing: There will be no price increase for the new system.
Transition: Insulet has been working for "18 months" to make the transition to the new smaller pod "easy" and fast for us the users.
How the upgrade happens: Current OmniPod users will receive an email stating that upgrading is possible. All you have to do is contact them back to get the ball rolling. Sean stresses that the process will be super easy, fast and efficient. They are working hard to make the transition a pleasure.
When? When can I get them?: There is some training of staff, endos and the like that's happening now. Expectations are that those steps will be finished and the new Pods will begin being delivered in the first quarter of 2013. I know you feel like you've heard that before but this time the ball is completely in Insulet's court, they have control, I'd bet anything that this time frame is accurate.
More when: For customers that are currently under warrantee. Your new Pods will arrive after you've exhausted the stock that you have in your home. Upgrades will happen at re-order only.
Any insurance stuff to worry about?: Simply, no. If you happen to be outside of your warrantee there will be some steps to take between Insult and your insurance company but Sean assures me that most of that process will happen on their side of the equation, requiring only a minor amount of effort on your part. The man said, "easy" is their goal, I believe him.
Interesting technical stuff
- The insulin reservoir capacity remains the same even though the pod is smaller.
- I asked Sean, "how did your R&D people accomplish the size reduction?" He responded simply by saying, "they're brilliant!". The slightly more technical reasons however include, the insulin reservoir shape has been changed to an oval and flattened. Plus the new Pods require only three, instead of four batteries because of enhancements that lessened power requirements.
- The new PDM has a dramatically improved stated signal range of five feet, but between you and me, I've seen and used one during FDA required Human Factor Testing... I'd try backing up if I was you.
- The smaller Pods have a new feature called a 'pink slide.' When the cannula deploys correctly, it pushes a piece of pink plastic to be visible through a new, second window on the top of the pod's surface. You can use this together with the regular viewing window for additional confirmation of insertion. - Info and picture added at 5 pm on 12/14 after second conversation with Insulet.
Why the long wait:
I expressed to Sean that the long wait for the newer, smaller, lighter OmniPod made me wonder if they were ever going to see the light of day in the U.S.
Sean indicated that the Human Factor Testing requirement from the FDA was in it's infancy (my word) when they were seeking approval and that both sides lived through a learning curve. He did stress that he genuinly belives that the "process is valuable" and when I asked if it was fair to say that the process provided me (and you) with a better, safer insulin pump, he did not hesitate to say, "yes".
Sean closed out our discussion with two thoughts that I will share.
He hopes, for two reasons, that those of you that may be preparing to begin pumping with OmniPod don't feel as though you should wait for the new Pods to become available. His first point (that I can completely agree with) was simple. The current version is a great device. I can't argue with that. If you start today you will be using a wonderful insulin pump, one that has benefited many including Arden for years. His second point was a reminder that the transition to the new Pods will be so easy that it won't even cause a blip in your day to day life. So there's no reason to wait.
I'm choosing to include his thoughts, that you may read as marketing (and perhaps it is) not just because I believe in the company, but also because I know that Insulet is a small company. I don't know for sure, but I'm willing to guess that they wouldn't do well financially with a less then normal amount of new customers over the next three or so months. That's my honest take on this issue, I make no secret that I'd like Insulet and OmniPod to thrive, it's good for my daughter and for all of you that wear the pump.
Lastly:
Sean wanted all of us to know that he and Insulet appreciate all of our paitence during this long journey. He is thrilled by the reception that OmniPod receives in our community and is touched by the eagerness that the new generation OmniPod is being greeted with. He said, "I am happy and excited to put the new OmniPod into hands".
Now for the pictures, you know you want to see the pictures!
Hi-Res version are available in the Visual Record section of the blog.
I have good news about the new OmniPod for my Canadian friends right here