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Arden's Day Blog

Arden's Day is a type I diabetes care giver blog written by author Scott Benner. Scott has been a stay-at-home dad since 2000, he is the author of the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal'. Arden's Day is an honest and transparent look at life with diabetes - since 2007.

type I diabetes, parent of type I child, diabetes Blog, OmniPod, DexCom, insulin pump, CGM, continuous glucose monitor, Arden, Arden's Day, Scott Benner, JDRF, diabetes, juvenile diabetes, daddy blog, blog, stay at home parent, DOC, twitter, Facebook, @ardensday, 504 plan, Life Is Short, Laundry Is Eternal, Dexcom SHARE, 生命是短暂的,洗衣是永恒的, Shēngmìng shì duǎnzàn de, xǐyī shì yǒnghéng de

Filtering by Tag: type I

I Can: A Diabetes Blog Week Day 1 Post by Nicky Gil

Scott Benner

Nicky Gil is thirteen year old Ainsleigh's mom...  Nicky wanted to write for blog week and tell the story of the fear that she felt as she contemplated meal preparation during the first days of her daughter's diagnosis with type 1 diabetes. Her words really get to the heart of how a type 1 diagnosis can make a person feel.

I can make eggs 10 different ways...

I can make eggs 10 different ways. Just ask my daughter. That’s all she ate in the first few days after diagnosis when my refrigerator became this vast, cold box of completely forbidden and potentially deadly foods; but eggs, the “incredible, edible” were warm, filling and safe.  We’d had nutrition training the first week of diagnosis.  We’d met with the dietitian, the endocrinologist, multiple nurses – all sources of solid, reliable dietary guidance; this was not the issue – fear was.  I would stand in my kitchen at mealtime, paralyzed that my wrong choice would cost her a leg, a kidney, her eyesight, her life.  I wasn’t ready risk it for the sake of a piece of toast.  Eggs!  Eggs were safe.

hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio

The eggs weren’t the only scrambled things those first few days.  New vocabulary bounced around my brain in no particular order - hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio - flashcards wouldn’t have been a bad idea.   Meal creation was too daunting a task, I thought, given my limited knowledge of what was “safe.”  Thankfully, our diagnosis occurred in the summer, when I had access to a carton of eggs and a stove all day long and mercifully didn’t have to contemplate meals beyond the house just yet.  Perhaps, this would have nudged me to conquer my fear a couple days sooner and saved my family my unfortunate foray into poaching – perhaps.

My daughter took her reduced option menu in stride as, I’m sure, my confusion was nothing compared to hers.  Overnight, her world had completely transformed.  The pantry during the summers her first eight years was an open door – stocked (somewhat) nutritionally as the hours between a prepared breakfast and a prepared dinner were much more free flowing than during the school year.  Our pantry might as well have had an armed guard standing next to it the first week of diagnosis; it was right up there with the refrigerator in terms of its standing as a weapon of mass destruction.  In addition to her now (severely limited) food choices, we kept coming at her with small needles a few times a day and sticking them into her fingers and slighter bigger needles at mealtimes and sticking those into her stomach.  And we were full of (misguided) directions those first few days – no soccer, no ice cream, no sleepovers, drink this, eat your eggs.

Nicky Gil

Nicky Gil

It took three days for my daughter to decide she’d had enough.  As I approached with the needle, my shaking hand not very reassuring despite her telling me in exasperation multiple times, “It doesn’t hurt,” she took the insulin pen, looked me in the eye and said, “I’ll do it!”  Three days.  She’d had enough.  She’d was growing weary of fear – mine and hers.  I followed her lead, albeit a little more slowly.  She seized control of her situation in three days.  I branched out to toast with the eggs a few days after.  She learned to prick her own finger and I began to mentally unlock the pantry and the refrigerator.  As she learned to cope, I learned to manage my anxiety.

Four and half years in and I’ve just picked up a package of double stuffed Oreos at her request.  Funny, this isn’t something I would have given her pre diagnosis but, now, I fund the rebellious cookies.  She’ll carb count, she’ll program her pump, I’ll advise against more than one.  Our meals now include a variety of foods, most healthy, some not so healthy.  She ice skates daily, she goes to sleepovers (and texts me her numbers religiously if she wants to be allowed to go to the next one), she packs her lunch bag.  We worked our way slowly out of our first protein packed, miserable days.  We fought fear in our own way that first week, now we fight diabetes together, daily.  

Ainsleigh still eats eggs...

Nicky Gil - Mom of Ainsleigh Gil, age 13
Richmond, VA

Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott


Keep it to yourself: A Diabetes Blog Week Day 2 Post by Kelly Griffin

Scott Benner

I put out the word on episode 15 of my podcast... If anyone in the diabetes online community didn't have their own blog and wanted to participate in Diabetes Blog Week, I'd host their blog post here on Arden's Day. Almost immediately, Kelly Griffin emailed me to say that she wanted to contribute a post. Initially Kelly considered writing anonymously but late yesterday she decided to not just attribute her name, but also her face to her writing. Kelly may not have been completely "out of the shadows" when she wrote this blog post... but she certainly is now! Please help me welcome Kelly into the light... - Scott

Keep it to yourself...

Thank you, Scott Benner and Karen Graffeo, for giving me the opportunity to write about a topic that seems to define my life with type 1 diabetes. To give a brief history, I was diagnosed with type 1 diabetes about 13 years ago. It was a puzzle to my doctor at the time, who assumed because I was in my  mid 20's, I must have type 2. It was actually the CDE (Certified Diabetes Educator) who determined that I was mostly likely a type 1 in a “honeymoon” phase. She turned out to be correct, and I quickly found an endocrinologist who helped me move to MDI. 

That was a time of significant transition in my life. I had been a professional student since undergrad, and was about to move to New York City to pursue a performance based career. When I shared my diagnosis with some people in the industry, I was quickly told to keep it to myself. They cared about me, and worried I might be looked at differently, or miss opportunities because I would be perceived as ill or somehow incapable. I didn't question it. Be it right or wrong, that was the way it was, and I adhered to that. I worked very hard to make sure that no one knew about my type 1.

I spent my whole life studying and preparing for this career, and I couldn't let my diagnosis become an issue now. 

Since diagnosis, I have been in pretty tight control of my diabetes, but at one visit I expressed frustration to my doctor about the amount of injections that I was giving each day, and that it was becoming harder to explain my trips to the restroom before every meal. For years, my endocrinologists have wanted me to be on a pump, but I refused because I couldn't image how in the world that would work in a quick costume change backstage. I could have several people helping me in and out of complicated clothing. Where would the pump go? How could I do this so that they wouldn't know? 

Now that I think back on it, that was my first glimpse into the DOC (Diabetes Online Community). I found forums of people talking about this “tubeless” pump. I started looking into it, and thought that might just work. I could easily hide it under a camisole while in a stage production, and no one would ever know. So, I started pumping with the OmniPod about 8 years ago, and have been using it ever since. 

Secrecy has its burdens.

Kelly Griffin

Kelly Griffin

The longer I live with T1D, the more I feel the need to talk about it with someone. I need community. When you are diagnosed as an adult, you never have the experience of anyone else taking care of you. I know this is naïve, but I sometimes envy hearing about people diagnosed as children. I wish that my family knew what I deal with on a daily basis, and how hard it can be to stay in control. I have been the only one in my world who knows what I am going through. 

It was 13 years before I met another person with type 1.  I actually saw an article about this woman in a local publication, and semi-stalked her on Facebook until we were able to meet for coffee. It was the most amazing experience to sit down with someone who pulled out a pump that was “alarming” during our meeting. I am not the only one? So, I'm not the only one who sits with one arm digging into my abdomen for 3 hours in a live theater performance trying to muffle the sound of my pod beeping away? I'm not the only one who tries to discreetly light up my Dexcom screen in a movie theater to check my numbers? I'm not the only one who sits in fear of my Dexcom vibrating during church every Sunday? 

That meeting was so incredibly freeing, and it left me wanting more connection. I quickly delved into the DOC at that point. I found Scott Benner, Diabetic Danica, Kerri Sparling, and Cherise Shockley, to name just a few. Most of these people have no idea who I am, but I feel like I have community through their efforts, and I cannot express my gratitude enough. I am amazed at the strength I see in the DOC. The women, men, and children, who proudly display their pumps with or without tubing, check their blood sugars in public places, and post online without reservation or worry about what their professional colleagues might think. Those of you living boldly and out loud, inspire me.

I am choosing to walk out of the secrecy a little bit at a time. I'm not completely out of the shadows yet, but I'm working my way there. I see that I have to be bold if we're ever going to find a cure. I have to find a way of being comfortable speaking up. This is my first step, and I thank you for the opportunity. 

-Kelly Griffin


What a wonderfully honest and brave post from Kelly - bravo!

Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott



Sometimes Your Blog Makes Me Feel Like a Failure

Scott Benner

A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes... 

Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.

I was crushed because it wasn't Michelle who failed, it was me

Michelle and Mason

Michelle and Mason

Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.

I took her words to heart

I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble. 

I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.

As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.

You can listen to our conversation right here with the embedded player, on iTunesStitcher or your favorite podcast application. 


Inspired by Conversation

Scott Benner

I enjoyed having Kristina and Greg on my podcast so much that I asked them if they'd be interested in contributing a blog post to Arden's Day. It suffices to say that the topic Greg chose to write about warmed my heart! After you read his piece you can listen to their episode with the link below on iTunes, Stitcher or via the player that I've placed at the end of the blog post. Enjoy! - Scott

Time to Get More Aggressive!

Last week, my wife, Kristina, and I had the great pleasure of being featured on the 9th episode of the Juicebox podcast. It was a lot of fun and we both loved listening to it!


For parents of a child with type one diabetes, it’s fairly common for one parent to assume the majority of the diabetes management responsibilities. In our case, we pretty much split the duties (although, in full transparency, my wife does way more than I do!). We thought this would make for an interesting and entertaining discussion. When Kristina pitched the idea of an interview to Scott Benner at the Juicebox Podcast, it went like this….

“We'd love to be a part of one of your upcoming podcasts! Not sure if you've had any D-mom/D-dads reach out as a team to chat with you but we thought it might be fun. We have VERY different styles of managing Isabella's diabetes but it works.”

But, I’ll be honest; the podcast was completely Kristina’s idea and I really didn’t have much of a choice in the matter. My wife is extremely outgoing (understatement?) and jumps at the chance to speak in public forums. I, on the other hand, have always been a bit more reserved and would prefer to avoid being the center of attention, if possible.

So, for me, the thought of being interviewed is somewhat anxiety-inducing from the start and more so when my wife informs me that the interview very well may include some “newlywed style” questions to see how well we know each other. While I think know my wife very well (for years she has been preparing me for the off chance that we might someday appear on a famous live TV game show….I can’t count the number of times I’ve heard ”honey, remember this for when we’re on the game show!”), needless to say I started to get slightly nervous.

Kristina went first while I sat in the other room pretending as if I was completely calm, cool and collected and not at all anxious about the interview. All I could hear was Kristina’s muffled voice followed by her seemingly uncontrollable laughter, most likely telling one of her favorite “Greg stories.” Oh boy. Here we go…

It was finally my turn to join in on the fun. Scott immediately made me feel at ease; my nerves started to melt away and I actually started to enjoy myself. We spent quite a bit of time talking about the team-based approach that Kristina and I use for managing diabetes, which works very well for us.

While Kristina and I do act as a team, we have quite different approaches in the way we prefer to manage Isabella’s diabetes. Kristina tends to have a heavier hand with insulin (often generously “rounding up” carb counts), which helps to avoid highs. I, however, prefer to take a more conservative approach with insulin to avoid very low lows, especially overnight. The thought of what could happen to Isabella as a result of too much insulin absolutely terrifies me.

Scott seemed to be intrigued by the fact that we work as a team but with very different approaches. As a veteran type one diabetes parent, Scott shared some stories about his approach to managing diabetes. He talked about how technology, especially Arden’s Dexcom CGM, has enabled him to get comfortable with taking a very aggressive approach to insulin. This approach has led to very tight control (I still can’t believe Arden’s last A1C!).

This part of our talk really hit home.

While I’ve known that getting a bit more aggressive with insulin is likely to lead to better outcomes, I am completely terrified that I might kill my daughter with too much insulin. Our conversation helped me realize that I need to get over this fear. We have amazing technology at our disposal (including Isabella’s brand new Dexcom Share2, which is an amazing game-changer in my book!) that I can more fully leverage to help me get comfortable with becoming more aggressive with insulin, which will ultimately result in lower A1Cs, better overall control and a healthier little girl.

After finishing the interview, I believe one of the first things I said to Kristina was, “I’m gonna get more aggressive!”

It’s time to get over my fear. Thanks, Scott, for pushing me over the edge.


Greg Dooley
InspiredByIsabella.com

Diabetes Hell Week

Scott Benner

We've recently emerged from a diabetes hell week, it was a doozy! Unexplainable high blood sugars that last half of a day were followed by perfect BGs that would suddenly fluctuate in either or both directs. I didn't sleep very long most nights during this period and at times I thought perhaps someone had switched Arden's insulin with water. 

Shit was bananas and I couldn't figure out how many carbs were in it...

Not wanting to be left out of the fun, our diabetes technology also acted flaky once or twice during hell week - during one such incident I found myself wondering, "How does it know to f%^* with me right now?".

As a rough afternoon with type 1 diabetes turned into a long day and that day into a week, I found myself making some of the same mistakes I've made in the past. I'm hoping that this post will serve as a reminder for me (and you) so I can avoid them next time.

The mistakes...

  • I was willing to trade my health for better BGs when what I should have done is played a Get Out of Diabetes Free card and asked Kelly for help. Instead, I passed out on the sofa one night as I was trying and ultimately failing to stay awake for another long night of BG battling. 
  • I fell down the rabbit hole of wondering what Arden will do when she gets older during times like this.
  • I was too tired the next day to cook and stopped eating well, this exasperated the situation by sapping my energy further.

I did manage to do a few things right...

  • I injected when I thought an infusion site was to blame for a high BG - sometimes it was the site, sometimes in wasn't.
  • I kept Arden hydrated.
  • We didn't use diabetes as an excuse to stop doing our day-to-day stuff. It sucked but Arden took a hitting (softball) lesson with a BG over 280, she made it to school with shaky numbers and went to the mall with friends in the middle of a BG nightmare (New site, almost 400 BG and a Dexcom sensor that was so confused by the high it stopped working for 3 hours). We adjusted and kept moving. BG was around 100 when she arrived home.

What I took from hell week

A few things stuck with me after the craziness passed and normalcy returned.

  • I already knew this first one but was reminded again, I can't be here for Arden if I'm not here. My health is important.
  • Staying fluid is monumental and attitude goes a long way to effecting reality.
  • I don't have to cry anymore when I begin to wonder what Arden will do when she moves out because diabetes technology has evolved so that we can be with her if/when she has the need. Now that continuous glucose monitoring technology is in the cloud, Arden can call from college or anywhere and say, "I'm not feeling well and I want to take a nap... can you watch my blood sugar?". I am so grateful for the Dexcom Share2 for this and for taking away my annual What is Arden going to do when she gets older cry-a-thon. 
Miranda

Miranda

Last night as Arden was attempting to stretch out her bedtime by doing her Miranda Sings impression, I mentioned to Kelly that Arden suddenly looks more mature. Her face looks different and her body seems stronger. It was one of those moments when you could swear that she grew since the morning. I thought to myself, "This must be why her blood sugars have been so crazy lately" then I smiled - maybe the smile was from Arden's rather spot on Miranda impression, maybe it was from knowing that hell week was for a good cause - maybe it was a bit of both.

What ever you do... do not go to YouTube and search Miranda Sings - you have been warned!