Most days, I can manage this disease just fine
However, I just did not want to deal with it today. It all started when I woke around 9am to check her glucose on the Dexcom app on my iPhone and saw the infamous “???” She’s always properly hydrated and the transmitter was securely intact. These are some of the standard trouble-shooting issues Tech Support will ask in addition to where is it placed (discussed later, keep reading) if you request a complimentary replacement. With that said, this typically means that the enzymes at the tip of the sensor under the skin in the interstitial fluid has worn out. More specifically, it lacks a chemical electro enzyme reaction to generate a signal strong enough to transmit to your Dexcom receiver and/or smart device(s). Today was only the sixth day of that sensor when it should last seven days. We didn’t bother to request a replacement since it wouldn’t arrive until Monday morning anyways. It just wasn’t worth the phone call for us on a busy Saturday morning with plans to go to her classmates birthday party.
My Hubs had made breakfast so that I could sleep in since I’m the one on-duty all the time and need at least one day out of the week to recuperate. He pricked her finger before she started eating her Brazi Bites and eggs and she was at 190 mg/dL. We cleaned up and had her lay on the couch so I could put a new sensor on her right arm and remove the old one on her left. She wasn’t as cooperative as she usually is and cried more than ever before. This is why we prefer to change it when she’s been asleep and stable for an hour or so.
It only took about 10 minutes to put the new sensor on and click Start Sensor on both the receiver and my iPhone. Then, I had my Hubs remove and clean her old site so I could hop in the shower and get ready. The warm water hitting on my back was a little soothing and as I turned, I took a deep breath in and imagined I was surfing in the warm waters back home on Oahu instead of dealing with this bullcrap of shotty diabetes technology – instead of tolerating this wretched disease that always threatens my baby’s life daily.
I got dressed and put on some light makeup quickly and then, tended to Coral’s outfit, hair and shoes. By now, it was 11am and the birthday party had just started. Rain began to drizzle on our window panes and it was 54 degrees outside. Winter surely came late for Southern California this year. I had left her classmates present in the car overnight in a failed attempt to give his mom the gift during class yesterday. She handed it back to me and asked to bring it to his party instead. Instinctively, I knew the morning would bring us something unexpected as it did. If I had insisted she take it yesterday, we probably would’ve just skipped the party while her Dexcom occupied it’s two hour warmup and let Coral sit on the floor stubbornly playing with Legos.
We placed her D-kit (diabetes kit) in my Tory Burch hobo bag, put on our jackets and kissed Daddy goodbye. “We’re gonna have fun today, okay kiddo!” I tried to convince the both of us as I clicked the buckle of her car seat.
“I don’t want to!” Coral protested.
“You might like this new indoor play space. It’s got slides and there’ll be a bunch of kids there.” She persistently disagreed.
We finally parked the car on the street and walked over to the Treehouse, gift in hand, soles of our shoes damp from the rain. I spotted his mom speaking with her friends and she came over to greet us.
“We’re not staying. It’s been a shitty diabetes morning and she’s throwing tantrums. Here’s his gift though.” I tried to get out of there as quick as possible. She’s a very sweet and understanding mom. Clearly very persuasive as I sat down on the bench with Coral nagging and crying, “Carry me! Carry me! Stand up! Stand up (repeat 4 x).”
Another Mom we go to class with came over and hugged us and offered to take Coral to play with her two year old. After several minutes, she finally went over to go play with the other kids. Now what? I thought to myself. I glanced over at her Dexcom receiver only to find that it never started the sensor pairing and displayed an “X” in the top right corner where the pie shape timer should’ve been. Damnit!
Thankfully, my iPhone was still registering the two-hour warmup and we had about 20 minutes remaining until we poke and calibrate twice with two glucose readings. I had to grab her off one of the slides, sit her down on the padded bench to poke her finger. “Real quick honey and then you can go back and play,” Beep! First BG was 140 and the second was 147. Good starting numbers for not having a glucose reading for two hours.
Now, here’s where it gets tricky. You can’t always rely on the Dexcom CGM’s trend arrows or number the first 24 hours or even the last of it’s lifespan all because those enzymes are still “cooking.” So, I was slow to bolus her for the two oranges and guestimate of carbs from random bites of cake, cupcake, and a cookie. At least she didn’t go low from playing non-stop which often happens with a lot of physical activity. Her body just burns glucose for energy really fast making her more sensitive to insulin via pump.
We’re not exactly “new” to this T1dLife and I couldn’t figure out why that day had upset me so much. It nagged at me like a child pulling on your clothes as you’re trying to make a phone call to reorder dermal medical supplies. Then, it hit me by the next morning – it literally “dawned” on me:
It’s her 2nd Diaversary and I’m upset about her having to go through this bullshit just to stay alive EVERY SINGLE DAY while these other kids get to stuff their faces, run and play around without a care in the world (or at least their parents don’t have to calculate everything their child eats or does).
It’s been a whole ‘nother year living with this damn disease and I hate it, for her. I absolutely hate it. Her daily tantrums don’t help either. We need a f*ckin’ cure. Plain and simple. No child should have to sacrifice their time to to take premature responsibilities in managing this disease while they see other children continuously playing and enjoying their childhood. Their freedom. YES, I know she’ll probably grow up thinking of T1d as second nature, but sometimes, I just don’t give f*ck about the silver lining because it doesn’t account for much. YES, everything else is pretty damn great in our lives – because we work hard for what we have, but that still will never make up for what she has to deal with on a daily basis. I don’t expect anyone who doesn’t have a child with a chronic disease to ever understand this reality we are living in. I’m now writing this reflection on Sunday, March 11, her actual diaversary and have gotten over this ill feeling. I will continue to keep kickin’ T1d in the ass as usual, but damn, it’s exhausting AF.
More on her 2nd Diaverary coming up. I hope I didn’t loose you with my random rant. Much mahalo for reading this far and thank you to our true supporters. Follow @type1diabetic_life on Instagram and @typeonediabeticlife on Facebook for more cool gear and the truth about this T1dLife. It ain’t always glitter and unicorns.