Diabetes Sucks

We swapped Arden's OmniPod last night after basketball practice, it was a little later in the evening then I would have liked as being tired combined with jabbing a hole into yourself, seldom goes well - but then, what does go well with piercing your skin with a needle?

After we finished, Arden asked me if I would "cuddle" with her for "ten minutes" when she went to bed, great offer, I of course said, "Yes!". 

As we climbed into bed Arden had to reposition herself a few times, she told me that it takes a little while to become accustomed to having a pod in a new site and that she was going to sleep on her side because of the placement of this pod. Even though I am aware that she uses different sleep positions based on pod placement, the look on her face as she tried to get comfortable, mixed with the mature way that she explained the annoyance, brought me a moment of melancholy. 

When we finally got comfy Arden kept talking, and she told me that she wished we didn't have to change her infusion site so often. My mind immediatly raced back to before we began using an insulin pump and those long sad days of giving my baby ten needles.

"I know it hurts", I began. Arden stopped me and made it clear that I didn't know what it felt like to have type I diabetes and then she added this exclamation to her sentence saying, "Diabetes sucks!". "You're right", I replied, "I don't know what it's like". I rephrased, "I imagine that it hurts to get stuck with a needle and I know that having it happen every three days must suck.

Do you remember when you received insulin with needles?". She did not.

I told Arden how I would give her two needles every morning when she woke up. I explained how we'd test and shoot insulin later in the morning for breakfast, how sometimes a couple of hours after a meal she would need more. Breakfast, lunch dinner and "You would eat a snack everyday around three in the afternoon and one before bed". "Did I get a needle at snack time too?", she asked. By the time I finished explaining how we managed her BGs with needles, we counted ten injection. Two in the morning (BG maintenance and slow acting), at times two for meals (Carbs and BG maintenance), an afternoon snack, evening snack and two before bed (BG maintenance and slow acting). We decided that most days she experienced about ten shots and then we did some math. When Arden realized that with injections she would get stuck about a hundred and forty times in two weeks, she looked relived. More math told us that two weeks of needle sticks was the equivalent to one year of site changes. With that news, she proclaimed that changing her pods wasn't "too bad" but, "it still sucks".

A car accident that results in a broken arm is certainly not a cancer diagnosis, but it may well be the worst thing happening in your life. Perspective is certainly very important to have, but not at the expense of your own feelings. I am elated that Arden knows that her insulin pump has made her life better without forgetting that needing to wear it, to stay alive, sucks.

I left her room feeling proud, the melancholy had left me. Diabetes may suck, but she owns it.

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.

Left, Left, Left, Right, Left.

Arden's right hand knows a secret that her left hand doesn't, but it wants to tell...

I know that there are days when you worry about your child's ability to adapt and grow with type I diabetes - I worry too. That's why I loved it when Arden came to me recently for help becasue she couldn't figure out how to test the fingers on her right hand. Arden is right-handed and the other day she came to me and said that she knows she needs to vary the fingers that she uses for testing more frequently. The problem with that... she can't seem to hold the lance properly with her left hand.

This was maybe some of the best news that I heard all summer, here's why. First, it means that she really does hear the conversations about site rotation and she understands them. Second, she hit a speed bump and wasn't afraid, embarrassed or nervous to ask for help. Last of course, she is taking ownership of her diabetes, slowly, as she is prepared to do so. Diabetes on her terms, I love it!

The rest of the tale isn't as story book. I too wasn't able to hold the lance properly left-handed and after two tries she, a bit annoyed, took it from me and then proceeded to similarly fail at the task. So while the core issue was left unresolved, all that the issue shed light on is now out in the open and cause for celebration. That celebration only resides however, in my head and on this blog, two places where Arden doesn't have access. I did tell her that I was proud that she was thinking about rotating and we spoke for a few minutes about the fact that it would take some practice to use her left hand for the task, but I didn't make a big deal about it, not to her. I am however, celebrating in my head. This was a great moment and a clear sign of maturity and understanding.

Seven Years Later

It's 2:45 in the morning on August 22, 2013 and I can't sleep. I'm tired but not in the way that I remember tired feeling seven years ago. Seven years ago when I felt tired, I'd shut my eyes and go to sleep, the process felt natural and without repercussion. Seven years later, I forget what it's like to feel refreshed. I sleep when I'm able and stay awake when it's necessary. Tonight I'm up fighting with a few spoonfuls of a bedtime snack that seems to want to keep Arden's BG at 250. 

I checked Facebook, perused Twitter, read your blog comments, made notes for myself so I won't forget to do some important things tomorrow and so now I'm downstairs writing to all of you. It's 2:52 now and in a few minutes Arden will have type I diabetes for seven years.

I remember the emergency room doctor coming into the room, he looked tired and he didn't make eye contact immediately upon entering. I knew he was going to tell us something terrible, I could feel it. Kelly and I sat next to each other in a palatable pool of sadness, waiting for him to confirm what we already feared was true.

The next two years were among the worst that I've ever experienced, but today, seven years later, I'm mostly okay and Arden is great!

It's exactly 3 AM now, the clock turned while I was looking for a passage from my book to share with you. I looked up and saw the time move forward when I heard, and I can't believe this just happened, when I heard Arden's DexCom beep twice at exactly 3 AM. That seemed like a sign until I realized that thing beeps all damn day... Anyway, I could search my mind all night for the right words to explain what I've learned in the last seven years, but I think I already found them when I wrote my book...

People can make claims about how to navigate personal turmoil, and there is a literal ton of books to help you get through life’s terrible moments. I only have one piece of advice, and I can lend it to you with the full knowledge that it served me well.

Don’t stop and don’t give up.

Some days will bring the weight of the world to you—don’t stop. There will be times that those days turn into weeks—don’t give up. There is a wonderment of understanding on the other side of your struggle, and it’s worth getting to. These days and weeks that seem as though they exist only to torture you and the people that you love—they teach. The pain strengthens you and the dings in your soul aren’t as deteriorating as they initially seem. In the end, they are reshaping it, and it’s up to you to decide what shape it will take.

I am contractually obligated to say that excerpts from 'Life Is Short, Laundry Is Eternal' were used with the permission of Spry Publishing. Actually, I'm supposed to ask them before I use the text but they're a good bunch and I'm betting that this would be okay. 

Today is Arden's 9th Birthday

Nine years ago today my amazing wife Kelly gave birth to our second child, she was the most perfect little girl that I had ever seen. A few days later, we brought her home where she and her brother Cole promptly fell to sleep together on our sofa. I couldn't imagine then, as I was taking what would soon become on of my favorite photographs in the world, just how much her presence in our lives would touch our family.

Since that day my children have shown me parts of life, the world, and of myself, that I didn't see before they arrived. These things were always there, yet somehow invisible to me. I never knew how much joy my heart could hold, how much pain I could withstand, I didn't realize the depths of the human spirit or how vast my own potential was.

And I didn't know what that word 'love' truly meant or how it's power would touch my soul...

Happy Birthday Arden!