Thankfully

Thankfully, it is not difficult for me to answer the question, "What are you thankful for?". A great many of us will answer that question today with words like 'good health', 'family' and 'a roof over our heads', but what of those who struggle to make even these meager claims? In my heart I know that today is for those souls, the ones who are not be able to answer such a question with warmth, joy and hope in their voices. Today, I'll think of them as I count my many good fortunes.

I am grateful for insulin and the people who continue to work on ways to make it better

A family that buys me a silly hat to wear when I make them special meals

My wife's strength and patients

My son's heart, my daughter's spirit

A warm home

My mother, brothers and extended family

Health, happiness and the staggeringly amazing diabetes community

I am thankful that the people who make up Spry Publishing let me write books... their kindness rescued my love for thinking

I'm thankful for all of you and I wonder if you understand how much helping you... helps me

Of all the things that I listed and all of the things that I didn't but could have, if you made me choose just one. If I had to tell you that I was thankful for one thing and that my gratitude meant that the rest of it would magically disappear, I'd choose insulin. None of these things would exist in my life if there were no insulin. 

Without insulin, I'd be too sad to think, love, find friends or care about the world around me. Insulin is everything, it's what I am grateful and thankful for. In it's absences, I would be the one of the people who struggle today to find a warm word of thanks. 

Think of those people today. May you share this day, and each that follows with your family, in a way that brings honor to those who weren't lucky enough to live in a time when their "insulin" existed.

Have a very happy Thanksgiving!

Best,

Scott

When things go wrong, they go wrong.

Yesterday was a busy day around here. Arden was leaving straight from school to attend a gathering of her friends at one of their homes. I also had a speaking gig at a local Barnes & Noble in the early evening. Remote management of Arden's BG extended past the school day and into the play date as I prepared for the event.

Everything was going great even though the food choices at the get-together were carb heavy, pizza, brownies and the like. Arden's BG was steady at 145 for most of the afternoon, we had seemingly defeated the pizza and the brownie didn't seem to be gaining any ground on the last bolus. Good stuff.

Arden arrived home just a few minutes before we had to leave for the bookstore (Kelly is away for work, so the kids came along), her BG was still holding steady so we jumped into my car and headed out. It was on that short ride that things began to go wrong. First Arden's CGM indicated that her BG was rising slowly so we bolused, it seemed strange because she was now over ninety minutes past the the time that she ate the brownie and there was no spike after she ate it. The pizza by this time had been ingested over four hours prior. I thought it (BG rise) could be the pizza but more likely we were fighting with the combo of pizza and brownies. Still the rise was slow and I had no concern that the bolus wouldn't handle it.

Forty-five minutes into the book talk Arden's CGM was going nuts. Her BG was now rising quickly and the last bolus didn't look like it was going to hold. She tested and we were very aggressive with the next dose, very aggressive. So there we were in a Barnes & Noble, I'm chit chatting with the crowd about Life Is Short, can't leave for an hour and trying to decide if Arden's blood sugar rise is food related or if her pump site suddenly went bad... I didn't know and only time was going to tell. A short while later we boulsed again because subsequent testing indicated that the last bolus only served to stop the rise in her BG and wasn't enough to bring it down. By the time we got home her BG had fallen just enough to create more confusion. Do you know what I mean? I was in that spot where it seemed like everything was going to be alright if I just gave things a little more time.

But you know that wasn't the case.

Arden climbed into bed with me to watch television (Far after her bedtime), she was drinking water, I was setting increased temp basal rates and staring at the DexCom screen - the evening had devolved into a good ole' fashion cluster fuck.

I gave up after one in the morning and changed her pod. I felt comfortable that her BG was in a safe place for me to sleep a little after four thirty in the morning. Good news is, my TiVo is empty now...

Bad news? I never heard my alarm and we didn't wake up until eight in the morning, school begins at five after. I woke the children and told them to get ready, "Don't rush, I just want you to arrive in time for second period". Cole jumped into the shower, Arden went to her room to get dressed - CGMnow was 80.

I brushed my teeth, got Cole to the first floor and called for Arden, she didn't answer, I called again... nothing. When I tried the knob on her bedroom door and it was locked, I knocked, no answer. So I raised my voice, "Arden!, Arden, open the door".

"I can't, I'm on my bed and I can't get up - I'm low".

When I unlocked the door to Arden's room she was sitting on her bed, her face lacked muscle tone and she looked pale. I immediately handed her a juice and asked why she didn't call me or drink a juice. She responded, "I can't move, I have a bad headache and I'm dizzy". We treated, tested and she ate a piece of toast. When her BG finally came to a balance I asked her to get ready for school but she said that she felt like she didn't sleep at all last night, she thought she was getting sick. I explained that I've heard from many PWD that they experience a hangover like sensation after a significant overnight low and that it comes with a feeling that you didn't sleep. Then she said something that dropped my heart into my stomach.

"That never happens to me..."

I had to explain that each day with diabetes wasn't going to be the same and that different issues are going to arise as she gets older. I think she was sad to hear that, but too out of it to care. It's almost noon and Arden is still sleeping in her bed. Her BG is all good now but I'm a little worse for wear. I'm sharing this today because I promised to try and be even more open during Diabetes Awareness Month. But also because I was reminded recently that my blog reaches a lot of parents and I never want any of you to think that the shitty stuff that sometimes happens to you... isn't happening to us. It is, it's happening to all of us.

You are not alone and I hope knowing that helps in some small way.

Three Days without DexCom

I felt quite like Linus the other day, when time took our diabetes security blanket away.

It was meant to be, the DexCom transmitter is designed with an internal battery that is warranted to last for six months but when our transmitter turned a year old a few weeks ago, I thought maybe we had the one that would never lose it's charge. 

Then, of course, it did.

Only a few days past it's birthday our G4 transmitter let out a death knell in the form of the image that you see above. "Low Battery: Order New Transmitter" - and so I did. Today's blog post isn't about a fight with an insurance company or a medical supply firm filled with inept employees. All of that actually went smooth as silk. I made the call and the new transmitter showed up three days later. But those days taught me a lesson.

The lesson? I lean so hard on that continuous glucose monitor that I was initially lost without it. Now, today's blog post isn't about how great diabetes technology can be, and I'm not going to sing the praises of DexCom (Though I could) - Today is about shining a light on the true meaning of what the CGM brings into a life lived with type I diabetes. 

Continuous Glucose Monitoring brings a sense of calm and peace while it removes uncertainty and blindness.

I can see the insulin go in but where does it go, what will it do, when will it do it and how long will it be before it has completed it's task? I can see the food go in, but how, when and with what intensity will it impact Arden's blood glucose level?

I stand in a dark room, it's walls built with uncertain nervousness, waiting for the room to catch fire. I think that's what injecting insulin felt like before we had a CGM. It felt like the five seconds before the knife wielding lunatic jumps from the shadows in your favorite horror movie. But it feels like that all day, at least it did in the past and it did again for these three days, well, it tried to feel like that but I was able to stop it with the knowledge that I've gained living with a CGM in our life.

My first reaction when the battery in Arden's transmitter failed the day after it's first warning that it would, was fear. I thought about how positively Arden's A1c was effected when we added glucose monitoring to our life and worried that our success was solely based on the information that our devices report. I was actually concerned that I wouldn't remember how to handle things without the technology that I've rightfully grown to trust. The first night I gave in to the pressure and I stayed up half the night testing. Do you know what those tests showed me? They showed that even though diabetes is unpredictable, I have a pretty good feeling for when it's going to be unpredictable. I know when a miscalculated bolus will become an issue, and low BGs aren't as elusive as they felt before I was able to watch twenty-four hours of blood sugars on the DexCom screen. There's no doubt that I can't predict everything and I certainly don't know when an unexpected change in Arden's BG will happen, but I can guess with some reasonable certainty. My educated guesses are now more educated than they once were, and I think that there are times when I lean too hard on the information coming from the Dex. I think that sometimes I know what the correct action to take is, and I use the DexCom data to convince me that I'm correct. 

So I found my bravery and went back to managing Arden's diabetes the way I did in the past... By closing my eyes, trusting myself and hoping for the best (And I tested more often).

I'll tell you what though, I put all that high-mindedness aside the second that the FedEx driver handed me the package that contained Arden's new transmitter. I tore the box open, grabbed the transmitter and drove directly to her school to pop it in. I trust myself, I do, but this diabetes dance is much easier when you have someone or something to lean on.

Update on Wednesday, November 20, 2013 at 1:28PM by Scott Benner

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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.

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".