Post A New Comment

I read blog post yesterday by Christopher Snider. Chris is hoping that on Monday, July 22nd people like you will take the time to comment on every diabetes blog that they read. Chris thinks that, "comments make the world go ’round, as far as blogging is concerned. Yes, there are stat counters and analytics reports you can run, but pageviews and unique visitors don’t mean much to me when it comes to sharing personal stories and experiences. What matters to me is when someone reads something I write, and then takes the time to leave a comment.". I couldn't agree with Chirs more and I am hoping that you to read his blog about the topic.

You already know what some of your favorite diabetes blogs means to you, but did you ever wonder what they are for the writer? Or how your participation completes the connection between the two of you and the other people reading? Diabetes blogs aren't like a tech or news blog, I'm not a guy reporting on a story, I'm a person sharing deeply personal thoughts and feelings in the hopes that my sharing will strike a cord of commonality with you. My only goal is to make your day a little easier, better, happier, lighter, more informed. My personal hope is that my sharing will, in some way, help you to not worry, panic, feel alone. I just want to help because I know how it feels to be in your position and no one deserves to feel that alone, scared and helpless - because we really aren't... but sometimes it takes finding others living the same life to realize that is true, at least it did for me. 

What you may not know is the act of writing on this blog is how I find peace with type I diabetes. My calm comes when I can see people like you reading. I tell myself that it doesn't matter if you leave a comment, that I can tell that you are getting something from the experience when you return the next day. I think what Chris is saying is that he believes blog comments perpetuate more blogs. He may be correct, I don't know. I'm not sure how seeing more comments would effect my writing frequency but I do like his idea for Monday.

Anyway, Chris's blog made me want to tell you that I have faith that you are out there and that sometimes I write stuff that you find valuable. But if I'm being honest, some days it is really nice to hear a voice come back from within the abyss.

I hope you have a second to read about what Chris is calling, #dblogcheck - Have a great weekend!

Live TuDiabetes Interview with Scott

Join Scott this Thursday, July 18 for a live video chat with Emily Coles from TuDiabetes.org. Scott will get chatty about blogging, type I diabetes advocacy, being a caregiver to Arden, his time as a stay-at-home dad and much more. It's going to be fun, hope to see you there!

Chat begins at 1 pm PDT, 4pm EST.

Please rsvp to the event on the TuDiabetes website so Emily knows how many scones to make - such a wonderful host!

It's my party, I'll reflect if I want to

Life expectancy for an American male is seventy-five, I just turned forty-two. What that means is, barring any unexpected endings, I have thirty-three years left.

Yesterday Cole and Arden took me to see a movie for my forty-second birthday, when we exited the theater it was pouring rain. I told the kids to wait by the door and I would bring the car to them. I sprinted to my car, it was perhaps seventy-five yards from the door. As I was running I passed a gentleman in his fifties, he was walking to his car and getting drenched in the process. Cole and Arden jumped in when I arrived at the door and Cole said, "You are faster then people would expect". I smiled at his kind, if not slightly backhanded shot at my weight but all I could think was, "Ten more years and I'll be that guy walking".

It's funny but after my mid twenties I never thought about my mortality once, I was carefree about my age until Arden was diagnosed just after my thirty seventh birthday. Now, everything that aches, my right knee, both of my ankles, my throwing elbow, the stiff neck I can't shake - all of it makes my think about Arden or more specifically, about Arden's diabetes. Lately, I've been extra tired. I'm not ill and nothing has changed about my schedule, I think that seven years of late nights full of blood glucose wrangling is catching up with me. Last night I tried to get some sleep. I told myself that Arden was going to be fine, gave myself permission not to sleep with one ear open and it worked great. I woke up this morning around seven thirty completely refreshed with a streak of warm sunlight on my face. The first thing that I saw when I opened my eyes was my beautiful wife. I laid in the quiet for a few minutes and thought about how pretty Kelly is and how lucky I was that she said yes on the day that I asked her to go on our first date. But that glow only lasted for a few minutes.

A muffled BEEP, BEEP rang out...

My heart sank into my stomach, that sound is the unmistakable cry of Arden's DexCom after it's fallen onto her bedroom floor. The beeping made me feel instantly sick for two reasons. First, the only way that thing could have fallen is if it had been vibrating all night and second, two beeps means Arden's BG is over 180. All night plus two beeps, equals this isn't going to be good.

I walked into Arden's room and tested her BG as she slept. The night before Arden's BG was falling before bed, she had a few slices of an orange and a cookie to combat the fall and her BG found a balance at 89. Thirty minutes later that number was 95 and her DexCom indicated that the number was drifting, ever so slightly up. I remember thinking, "Good, I'll take a 120ish number tonight, I'm exhausted". It was not twenty minutes later that I gave myself permission to pass out, and I did. I slept all night like a baby while Arden's BG slowly rose over the next two hours before it settled in at three hundred and ninety-one. I don't have words for how 391 makes me feel.

Am I too old to care for my daughter properly? Too tired, too out of shape? Have the health and food choices that I've been ignoring over the past two decades caught up to me, is this my penance for those... I haven't exercised regularly since my twenties, I hardly eat and I haven't had eight glasses of water in a day, maybe ever. Funny thing is that up until recently it didn't matter because nothing could stop me and I could power through anything. I've sat up until two, three, four, even five o'clock in the morning if that's what was required to keep Arden's BG where it should be. I've had nights like last night in the past where I slept through a DexCom alarm, but I don't think last night was a repeat of those nights. I think my age is catching up to me and even if it hasn't, how much longer until I'm that guy in the parking lot that has to let the rain soak him? How much longer until I'm exactly as fast as I look like I should be?

I've never been in great shape, never really cared about it enough to put in the time and work that fitness requires. I don't honestly know if I have it in me but I'm going to try because I can live with a belly and I may not care about a double chin, but my heart can't handle Arden's BG being 391... that beeping cuts right through to my soul.

Voldemort

I remember one summer when it felt like I heard the words, "Harry Potter" everyday. There were commercials online and on television, beach towels by the pool with the young wizard's face and it seemed like everyone wanted to see the movie about the boy with the scar on his forehead. I felt like I couldn't get away from the words, "Harry Potter"... but then one day it was all gone. No one uttered the words, the towels were packed away and the world moved on to the next thing. Today, maybe I see one of the films on cable while trolling the channel guide or because the films are so engrained into out lexicon, someone makes a joke with a HP theme, but for the most part I live my life without hearing the words or focusing on a visual reminder. 

Last night, still a little loopy from our vacation, Arden and I fell to sleep on the sofa together. Kelly asked me to bring her upstairs as she went to bed, I agreed, and then promptly went back to sleep. I slept last night next to Arden and held her DexCom receiver like it was my teddy bear. When I opened my eyes this morning that receiver and Arden's OmniPod PDM were the first things that I saw. Then, as it does each time that I awake, my mind sent me a message. I receive this message each time upon waking without fail. It comes to me when I open my eyes in the middle of the night, at my alarm in the morning, and after I nod off for ten minutes on a flight to a family getaway.

I wouldn't call the message something I hear in words, it's more of a feeling that I get, like someone whispers into my brain, "Arden has diabetes, is she okay... check on her".

After I woke up this morning I wondered how many times do I hear, say or think the word, "diabetes"? How much of my conscious and unconscious consideration is used everyday, managing, calculating and worrying.

I tried to imagine what it would be like to live an entire day without that word popping into my head. Would it be freeing, would I suddenly have all of this free time that I wouldn't know what to do with? Do you think that I'd find a new hobby or take more time to write. Would I exercise, get a bike, could I finally plant the vegetable garden that I know my wife desperately wants but I just can't figure out how to make time for?  I'd like to find out...

You know what though? Forget about me, I'd love to see Arden live a day without the word in her head. I'd like to know what it feels like to write one last blog post wishing you all well before I closed my diabetes blog because some company developed an artificial pancreas that was foolproof or a genius in a lab found a way to reverse all of this. More realistically, I'd take a day pass, but they don't really exist do they? Remember in the first HP movie when the wand salesman, Ollivander, told Harry that no one speaks his name and then everyone went on to say Voldemort about a thousand times? I bet if there was one more film about life in the Wizarding World after Harry defeated him, I bet people would still say, "remember when we were fighting with Voldemort, that shit was crazy!". 

Perhaps everyone gets a Voldemort in their lives. Maybe that's each of our chances to add to the collective human understanding. I think that I prefer to think about diabetes like that, not as a burden but a mantle. Still, I would like a day off once and a while. But since that's not going to happen...

Voldemort, Voldemort, Voldemort!

Holy @#%&*$% A1C

From the American Diabetes Association's explantation of Estimated Average Glucose (eAG) - check it out!

August is rapidly approaching which can only mean two things around here. The seven year anniversary of Arden's diagnosis, and the sixth anniversary of this blog are both coming soon.

Seven years in dog years is what, 49? Well in A1C years, it's 28. Arden has had twenty-eight A1c tests since she was diagnosed and most of them didn't go too well. As I've shared in the past, Arden's A1c began it's journey above nine and drifted lower over the years as I learned how to better manage diabetes. It wasn't until recently that we've made real strides in decreasing that elusive number.

I spoke in the past about the things that I attribute to helping Arden's A1c to fall. Things like finding the correct insulin for Arden, and technology like her DexCom G4 and OmniPod insulin pump. I recently wrote about Arden's decision to stop eating Fruit Loops and I think that may have put us over the top in this battle against "the number".

One year ago Arden's A1c was 8.1. Nine months ago we made real progress, 7.5 and back in January it was 7.4. I loved that 7.4 because it showed that the reduction wasn't a fluke, we were on to something! Today when we went to her Endo appointment I was certain that we would see another incremental reduction, and I was secretly hoping for 7.1. As I watched the timer count down on the testing equipment, my heart sped up just a bit. The last 10 seconds ticked away slowly, as I hoped to see that 7.1.

I'm not sure how I kept the words in my head when I saw the number, but somehow I didn't say, "Holy F*ck" outloud when the machine displayed Arden's latest A1C.

It was 6.5.

Six point five.

Six and a half.

Arden's A1c had dropped .09 in five months. I must of read that wrong I thought, so I stood up and looked closer and there it was just as clear as day, 6.5. I turned to Arden and said, "We did it Arden!". Then, without missing a beat, Arden warned the nurse that I was going to cry - but I never did. I wanted to cry, I wanted to scream into the air but I just sat back down, smiled, and told the nurse how Arden decided all on her own after our last visit to stop eating cereal for breakfast. "This was all her", I told the phlebotomist, "Arden asked after her last A1C what she could do to help it to go lower and I told her... she did the rest".

Back in February when Arden's A1C was 7.5 I listed a few simple reason that I thought helped the most to decrease her average daily blood glucose. I'm going to post them again here and then add two new ones.

Support - Love and support from family, friends and teachers is huge.

Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.

CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.

Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.

Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.

D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay.

new

Aggressively dealing with BG spikes - You know the ones, after a site change or miscalculated meal. In the past I preferred smaller boluses in the attempt to avoid a low but now I lean on the CGM and smack a high number in the face, preferring to catch it with carbs if I've administered too much insulin. The other way always left me bolusing and rebolusing for hours on end. The only thing I was accomplishing was taking five hours to guide Arden's BG back into place. Now, insulin, watch, catch the fall - done.

The new way that we manage BGs during the school day - Arden has four more days of school left this year and she has NEVER been to the nurse for a diabetes related reason, never. Arden and I text and speak by cell phone to manage her moment to moment type I needs. This new plan is one of the keys to her A1C reduction. In the past, I would make insulin and carb decisions only when Arden was with the nurse. This schedule left large gaps of time when high BGs, miscalculated carbs and the other diabetes anomalies would be left unaddressed. Now, Arden can text me if her BG is slightly elevated after lunch and we make small adjustments as we would if she was home with me. Lows are handle in kind, no more big carb intakes because I won't be in contact with Arden for many hours. We bump borderline lows and readdress if that bump didn't do the trick. No longer is the school day an eight hour crap shoot, Arden's diabetes is being dealt with immediately when in acts up. I plan on speaking more about this at length in the coming months.

This seems like a good time to remind you that I am not a doctor and that there is a clear message at the bottom of this page that insists that you never take anything that I say as medical advice because I do not mean these words to be such. I would however suggest talking about these easy adjustments with your doctor...

Update on Tuesday, June 11, 2013 at 2:59PM by Scott Benner

I originally posted an image with this piece that had some bad information on it. Thank you to Sara (@saraknic on Twitter) for pointing it out and leading me to the new graphic from The American Diabetes Association. Please check out their page about Estimated Average Glucose (eAG) and how it relates to A1C. Very cool stuff!