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.

When things go wrong, they go wrong.

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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.

Recall: FreeStyle and FreeStyle Lite Test Strips

From Abbott Diabetes Website:

November 20, 2013

Dear Valued Customer,

Recently, it has come to our attention that certain lots of FreeStyle® and FreeStyle Lite® Blood Glucose Test Strips produce erroneously low blood glucose results when using FreeStyle® Blood Glucose Meters, FreeStyle Flash® Blood Glucose Meters and the FreeStyle® blood glucose meter built into the OmniPod® system. Erroneously low results that are not recognized may pose significant risks to your health.

If you do not use the meters in the photographs below, your blood glucose test results are not affected and you do not need to read any further.

FreeStyle Flash® 
Blood Glucose Meter
 FreeStyle®
Blood Glucose Meter
OmniPod®

Please click here for Abbott's complete announcement that lists affected lot numbers and information about what to do next if you have strips that are part of the recall.

Pound the (Omnipod) Alarm

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From: System Documentation: New Omnipod PDM Model UST400

Have you ever experienced an Omnipod alarm that wouldn't stop?

Have you gone online to find out how to save yourself from the incessant squeal and receive tips like: You can open the pod and take out the batteries, put it in the freezer, hit it with a hammer, or my favorite... I put it in the driveway and ran it over with my car.

While I have to admit that a few of those tips sound like a great stress reliever, you don't really have to go to all of that trouble. All you need actually, is a paper clip. The new smaller OmniPod has a manual shut-off port (Just like the first generation did) for stopping that annoying alarm! If you'll refer to the diagram above that I borrowed from page 131 of the system documentation for the new Omnipod PDM Manual (Model UST400), you'll see where the port resides.

Just follow the instructions and don't forget to give the paper clip a firm push (It has to break through a thin layer of plastic) and the alarm will be no more. Best part? You won't slip with a kitchen knife as you try to crack the shell open and cut your finger off.

---

Bermuda Triangle

Last week around eleven in the morning, Arden texted from school to say that it was lunch time and she couldn't get any of her test strips to work. "I've tried five and they've all errored", her text read. 

No problem I thought, "What's your CGM say?"

"???", Arden replied.

We found that Arden could still deliver insulin with her OmniPod PDM so we bolused for lunch in the blind and I told Arden that I was leaving to bring her a backup meter. On the way to the school I spoke with OmniPod customer service (Picked up on the first ring!) and they suggested that I try a new vial of test strips. The CSR finished the conversation by saying that if the test strips weren't the issue, they would happily overnight us a new PDM.

I met Arden in the office a few moments later and we tested successfully with the new strips. The CGM sensor however, was toast, so we changed our testing strategy slightly and synched our reminder alarms. Arden went back to lunch and we managed the remaining four hours of the day the ole fashion way... with a meter.

In all of the years that Arden has had diabetes, this is the first time we've experienced a total and simultaneous loss of the ability to quantify her BG. Even though the timing couldn't have been worse, I never felt frazzled and I can only attribute that calm to having so much experience. I'm quite certain that this moment would have given me an aneurysm five years ago. 

Before I say this next bit, I want to remind you that I am not a medical professional and that the things that I share on Arden's Day are never meant as advice. There is a disclaimer at the bottom of the page if you'd like to read it. I gave Arden her lunchtime insulin in this situation without testing or the benefit of a CGM based on a number of factors. Time of day as it relates to her last bolus, we spoke about how she felt at length, based on historical data - Arden's BGs at this time of day over the week, the fact that she was going to immediately begin eating and I would be there with a new meter and strips in less than 10 minutes. I would never bolus without knowing the state of her BG in a normal situation.

We swapped Arden's DexCom G4 sensor (It had done more than its fair share... if you get my drift) when she arrived home and we were back on the path of technology based diabetes care, by dinner time. The PDM/meter has not given us a problem since, so I'm chalking this all up to an anomaly caused by faulty strips - but who knows.