Here we are again, after months of writing many personal pieces; I needed a break. I’ll be totally honest and say that being vulnerable is uncomfortable for me. I wrote a few pieces, but I just couldn’t bring myself to post them. I finally came to the realization that I needed a break from my own feelings. I needed to get out of my head and to take a moment to be present and let life pass without being overly conscious of every instance. As I’ve said in the past this disease forces you to live SO consciously that not doing so feels like a vacation.
But alas, the time has passed and a lot has happened and I’m ready to share again.
The biggest change in our T1D journey is that Luna is finally out of the “Honeymoon Phase” of her disease. The honeymoon phase is a period after diagnosis where the remaining Beta Cells in the pancreas still store/produce insulin. This period is both a blessing and a curse. A blessing, in that very little insulin, is required to cover carbs. For example, Luna’s insulin to carb. ratio was 1unit of insulin for every 20 carbs consumed during honeymoon. Now her ratio is 1unit of insulin for every 8 carbs, double the amount of insulin is needed to cover her meals and snacks. She doesn’t necessarily take more shots than before, just the dose is different. And a curse because the honeymoon period is tricky to manage because you literally have no idea how much insulin the pancreas is still able to produce! Meanwhile, we are following a set ratio, which leads to many bouts of low blood sugar. And that my friend is terrifying! So after a solid 9 months of “honeymooning” (horrible name, by the way! Honeymoons are supposed to be fun and relaxing. This is more like the calm before a major storm), all her Beta Cells are officially dead, removing yet another variable. Not to say that anything about this disease is a constant because it’s definitely not! The only constant is that Luna is insulin dependent. The rest of it sort of depends on calculations, timing, and luck.
For the record, this is only our experience. The “honeymoon” phase can be long or short or non-existent. It all depends on the person.
Another change is that Luna decided to give Dexcom a try. Dexcom is a continuous glucose monitor that is made up of three parts; a sensor, a transmitter and a receiver. The sensor is the part that is inserted under her skin. The transmitter is the tiny computer attached to the sensor which communicates her blood sugar readings every 5 minutes to a receiver. Dexcom provides a receiver and you can also use a cell phone as a receiver. This tiny device has provided so much peace of mind! The best part is the alarms that sounds when her blood sugar is below 80 or above 250. Talk about an instant anxiety reliever! Depending on the day she’s had, it can eliminate overnight finger pokes. We still do a finger check before meals or any necessary corrections. As with anything, Dexcom isn’t perfect and we always want to have as much information as possible before treating her. Luna has a love/hate relationship with her Dexcom which is why we remain flexible and allow her to take breaks from wearing one. I personally hate having anything on my skin, so I understand! Plus, it’s her body and she will have the ultimate say. (More on that topic at a later date) Paul and I both agree that life with Dexcom is pretty sweet- unintentional Diabetes pun.
We also agree that life with Luna is pretty sweet! (again) In a few days, she will celebrate her 11th-month dia-versary and she remains as resilient as ever. The last few months have tested us in a variety of ways and through it, all Luna has remained the light that has seen us through. She has proven to be a fierce advocate for herself and for her T1D community. She has lent her voice, her time and her efforts to raising money, volunteering and celebrating her fellow T1Ds. She may only be seven years old, but Luna has a purpose and is on a mission to make it known. Every single time you like, comment, share or generously donate it truly means the world to her and to us. Thank you.
It should be noted that this is not my best writing, but with the one year anniversary of her diagnosis lurking around the corner I find myself in a bit of a fog. What I am clear on, is how much writing helps me process all that has happened. Reading your comments and emails remind me that I'm not alone in my feelings. My soul is eternally grateful.