I know it’s been a very long time since I have posted anything on this blog. I don’t even know if anyone ever still reads it. In case there are people out there who are still subscribed to my updates (even if just by accident because you never canceled your email subscription) I will be offering you a challenge towards the end of this post.
Angelina is gone. She is not dead, at least not physically, but she is gone. In her place I now have a son, J. To spell it out in actual words for those who don’t already know this Angelina came out as transgender in 2015. It was in the midst of what was a very major depressive episode that ended in a 9 day stay in our local psychiatric hospital at the tender age of 11 3/4. Since that time we have been on a journey while J figures out his identity, deals with his depression, anxiety, and as yet undetermined other mental health issues, all the while with type 1 diabetes along for the ride. And all the “fun” that comes with hormonal changes (puberty, now birth control), adjusting insulin to accommodate the psych meds that cause insulin resistance, the psych symptoms (mainly anxiety/stress) that create unpredictable blood glucose, and also some normal 14 year old behavior and the start of high school.
In all of this J decided that he no longer wanted to wear the Dexcom. Sad as it made my little heart who absolutely wants to know his blood sugar every hour of every day, I have not forced the issue. I understand his reasons for not wanting to know his blood sugar every hour of every day or to have the alerts remind him all day long that he has diabetes. And, because the alerts are audible, that means everyone else around him is also reminded he has diabetes, or at least that he’s beeping, which is not “normal”. And so, he’s still pumping but no Dex.
Here is where the challenge comes in. If you are the parent or caregiver for a child with a Dexcom who is wishing they didn’t have to wear it, or requests breaks from it, or just flat out refuses to wear it all together, I challenge you to wear it instead. I know sensors are precious commodities and no one wants to waste even a single one, but I think the experience is worth it. In the past, I have slapped on the random spare sensor for a few days. I think the longest I ever made it was 5 days before I either caught it on something and it came out, or I was just so irritated with it that I deemed a few days as “long enough”. However, ten days ago I realized that J had started a new G5 transmitter about six weeks ago that he ended up only wearing for four days before his sensor came off due to sweating (it was July, we don’t have a/c, it was on his tummy, you get the picture) and I never made him put it back on. So, we had this $300 transmitter just ticking down the clock and nobody was using it.
So I decided to use it for myself. J most often wore sensors on his arms so I decided to put it on my arm. I couldn’t do it by myself so I had to ask my husband for help. This in itself was a challenge because my husband changes sensors maybe twice a year? And in the past two years I think he has done it once since J hasn’t been wearing the sensors most of the time. We got the sensor on, the transmitter attached and then my phone was telling me I couldn’t connect the transmitter because it was paired with another device. So then I had to unpair it from J’s phone and re-pair it to mine. This fixed the problem and my 2 hour warm up started. In the past, I have avoided putting extra tape on the sensor because I have very sensitive skin, but the Dexcom never sticks long enough without it. I always told myself that was okay for me. But I wouldn’t ever let J not put tape on, so why am I giving myself more grace? So I pulled out the 4″ Tegaderm HP film tape – the stickiest tape we use – and put it on over my sensor.
Two hour warm up wasn’t done until 11:30 pm because of the delay with the transmitter (which took 20 mins of troubleshooting, another almost 30 minutes to pair with my phone, and then 2 hours of warming up) so I got to bed late on the second day of school. Fortunately, my blood sugar stayed “in range” all night so I didn’t get woken up, but the next day I realized that wasn’t really realistic and didn’t mirror my son’s experiences with the Dexcom. I don’t have diabetes. I am high risk for type 2 and was recently officially diagnosed with metabolic syndrome, but most of the time my blood sugar is 105 or lower. Or so I thought. If I was going by my yearly blood work and fasting blood sugars and a1c level, I would think this was accurate information. I realized that having the data from Dexcom wasn’t enough of an experience for me, someone with near normal bg levels. I wasn’t going to be annoyed with alerts going off every time I ate or drank something. I wasn’t going to be woken up at night because I’m going low or high. And if I felt relieved by that, then why could I not find the same compassion for my child who DOES have those issues when wearing the Dexcom. So, I set my alerts so maybe they would go off after I ate a carby meal or decided to drink a regular Coke.
I realized that having the data from Dexcom wasn’t enough of an experience for me, someone with near normal bg levels. I wasn’t going to be annoyed with alerts going off every time I ate or drank something. I wasn’t going to be woken up at night because I’m going low or high. And if I felt relieved by that, then why could I not find the same compassion for my child who DOES have those issues when wearing the Dexcom. So, I set my alerts so maybe they would go off after I ate a carby meal or decided to drink a regular Coke. I challenge you to do the same. Take the first 24 hours, which we all know can be wonky anyway, see how your blood sugar reacts to different situations and figure out how to set your alerts so that you are alarming at least some of the time. Maybe when it’s not convenient. Keeping in mind that you don’t actually have to treat a high or low blood sugar, you just have to be interrupted by an alarm that you can then shut off and probably won’t repeat because your pancreas works (at least mostly) like it should.
I learned some things about my own blood sugar and what foods are probably best for me to avoid. I learned that at certain times of the day, even if I don’t eat anything, my blood sugar may randomly shoot up for no apparent reason. I learned that if I have a small snack that doesn’t happen. But that’s me and my pancreas. I have insulin resistance. I have metabolic syndrome. But I also learned a lot more compassion for my kid and his desire not to wear the Dexcom. I actually made it the full 7 days this time. My week was up three days ago and just today I finally got all the tape residue off. I bumped into doors more than a few times and caught the sensor on my bra strap and my shirt sleeves. I was annoyed. I thought of taking it off early. But we don’t give our kids these options most of the time, so we either need to put up or shut up. I don’t know what it’s like to have type 1 diabetes and if Trialnet was correct I never will. But I do know what it feels like to wear the Dexcom. And I know that as much valuable information it provides and the safety net it provides, I also need to respect my child’s wishes not to be forced to wear it all the time. I need to be compassionate and understanding when he is frustrated with it or his skin is irritated by it or a multitude of other things. This is an experience I can have and it is an experience I have learned from. I hope others take the time and effort to do so as well.