A few months ago I did a guest blog post for Beyond Type 1 (https://beyondtype1.org/about-beyond-type-1/) but also wanted to post it here. Thanks Beyond Type 1!
“Having the Dexcom SHARE has been one of the biggest assets to improving my diabetes management. Simultaneously it acts as a safety net, a stress reliever and a tool to more easily make necessary adjustments. I have had a friend use the share feature before to help watch over me while at college but I mainly share with my mother. Sharing my Dexcom read out is something I am blessed to have. You see, I am the “special” kind of diabetic where I don’t just have a Type 1 mom but I have a Type 1 mom who is also a registered nurse and certified diabetes educator. So in simpler words, with Dexcom SHARE I cannot get anything past her.
But let us put this in non-diabetic terms. Diabetes is like a space shuttle — just bare with me — catapulting through my life so fast that sometimes it is hard to keep up with it. This space shuttle does not care what is in its path and if anything goes wrong, it can be catastrophic.
I, I am mission control. I have all these controls and buttons that collectively do a lot of different things. There is the glucometer, the continuous blood glucose monitor, my insulin pump and everything that goes along with it. And then there is my mother. I guess you could say she is NASA.
This all came to be when one of the first days we had the Dexcom SHARE up and running. My blood sugar was rising very quickly and once we got past the awe that she could see the blood sugar from 500 miles away, we really began to see how amazing this technology was. I was rising very fast; I am talking two-up-arrows fast. If it were just me, I probably would have ignored this for the next two hours. But before I knew it, in came a text from mom saying, “Hello, Houston? Come in Houston. Do we have a problem?” This was a way of saying, why the heck are you going up so high right now?! Did you correct?! When was your last site change?! Do you have ketones!? What are you doing right now!?
I responded with, “It’s handled, I literally just ate and my bolus hasn’t kicked in yet.” It was as simple of a solution as that.
A few days later when a similar situation was unfolding, I got a text from my mom with just got rocket ship emojis.You can imagine my jaw hit the floor — I didn’t even know my mom knew what emojis were! Typically my response to this is, “I see it mom.” Or “I just ate mom.”
You see these responses to her funny little space shuttle metaphors are important to her. She later shared with me, that besides watching her daughter be diagnosed, seeing daily blood sugars of her now young adult daughter is the hardest thing she has dealt with regarding my diabetes. She just wants the confirmation that I am okay, because how as a mom, could she ever forgive herself, if she saw a dangerous blood sugar, did not intervene and something awful happened?
She has seen it all with me in these past 16 years. And even more than that, she has pretty much seen it all within her profession. I think it is safe to say that she has a good idea of what living with diabetes is like. But seeing blood sugar updates every five minutes can be overwhelming, even to a Type 1 mom. Seeing a blood sugar spike when she knows I have a presentation or figures out I had to halt my work out at the gym because she sees a plummeting blood sugar, gave her a new perspective that even when you do everything right, diabetes can sneak into every aspect of your life and surprise you.
This was both powerful and validating for me to realize that someone I have gotten in so many feuds with over diabetes had a closer look into what life with diabetes is like. It was scary to let go of something that has been so personally mine since I started being independent. Even though I felt exposed, this was motivation for me to hold myself accountable for my diabetes management.
It was a learning curve for both of us. I had to be more tolerant and understanding of how scary it is for her to see nose-diving blood sugars at night, but not know that the basal had already been slowed down or a juice box had already been drunk. I had to accept the care and concern I never thought I needed because I am so independent with my diabetes. And my mom had to really internalize that she taught me well and that I have a grasp on my management. And that by the time she sees a blood sugar on the Dexcom SHARE, I have usually already handled it.
The hardest part about the Dexcom SHARE is that the SHARE, a.k.a. “my mom,” can only see part of the picture. She can only see the speed and direction the space shuttle is going. She cannot see what mission control is doing to correct for a blood sugar that has gone off course. And not having that information can be cause for worry.
I know that her use of a corny metaphor is her way of showing concern without wanting to be overbearing. And you know what? I appreciate this more than she will ever know. But we did not just magically fall in sync with communication about blood sugars. We set up specific parameters about when she was allowed to intervene. Some of these include: she is not allowed to send a text unless I am out of range. She is not allowed to send a text unless I am rising or dropping rapidly. Once she gets a response, she should resist on asking further questions or soliciting further advice unless it is requested by me. If she does not get any kind of response three times in a row, she may call me. These are just some examples of ways she could intervene to prevent emergencies, without nagging. And you know what? Her texts have helped me be more conscious of my out-of-range blood sugars and have allowed me to catch lows or highs before they happen if I am not paying attention to the Dexcom myself.
The most important part of all of this was — like any successful space mission — we remained in constant contact with each other about my diabetes. Even when I felt like I was being suffocated by her texts, we discussed it, and I did not ever cut her out.
Now, now I get a whole range of different emojis including the big googly eyes when she wants to make sure I saw what my blood sugar is doing, or a thumbs up when I go the whole day in range. There is room for emojis in diabetes management, even for the most “seasoned astronauts.””