Yesterday I celebrated living with Type 1 Diabetes for 30 years. A milestone anniversary for a chronic disease may seem like an odd thing to celebrate. But, it’s a testament to the power of reframing to intentionally take time to celebrate that I’ve lived well for three decades with this disease, one that they said would be cured in 5 years back when I was diagnosed in 1993!
My family has grown accustomed to my “diabetes anniversaries” since I self-proclaim them every year. So, I received phone calls, flowers, and many “Happy Anniversary!” declarations from my loved ones!
I decided that 30 years should be set aside more specifically so we planned to be up at our family ranch for an entire day by the pool, reading, relaxing, and being together. Last week I said to Dennis, Sienna, and Mateo: “It may be presumptuous to assume my diabetes means anything to you… but for my anniversary can we just talk about my diabetes? I’m curious how it impacts you, how you feel about it, that kind of thing.” They all agreed to think about it. Bless them!
At dinner time, we started to talk about diabetes and Dennis jumped right in by saying he’s always been impressed with my attitude and ability to take care of my diabetes rather than to fight it. The kids similarly echoed that they feel like I manage it so well that sometimes they forget I’m even dealing with it. It sort of felt like I was fishing for compliments! But, they were sweet and sincere. Sienna said that she and Teo have only ever known having a mom with diabetes, so it’s just normal to them. Perspective.
When I try to put into words what 30 years of living with Type 1 Diabetes means to me, I struggle. It’s been a constant companion through so much of my life. I never doubted that I’d live a normal life, which may be partly because of the blind optimism that characterizes my outlook on life!
It certainly hasn’t been easy and managing diabetes has changed with the seasons of life. My teenage years involved a lot of highs and lows (both emotionally and blood sugar-wise!). I have memories of sitting down in the kitchen of my childhood home, eating excessively to correct a nighttime low in my late teens. Then in college, the biggest scare came in the summer after my freshman year when I experienced my one and only episode of diabetic ketoacidosis and was hospitalized with a Ph level “not compatible with life”. That was a wake-up call at age 19 that diabetes was serious and I had to pay much better attention.
Having healthy children after managing my blood sugar extremely tightly for at least a year is perhaps the accomplishment I’m most proud of. It brings tears to my eyes to remember the focus, devotion, and utter joy I felt during those seasons. It says a lot about my personality that I loved the rigor of logging my blood sugars and testing 12-15 times per day to achieve better than normal blood sugars during my pregnancies! My A1C in the middle of Sienna’s pregnancy was 5.0% which is lower than a non-diabetic! Oh, how I loved receiving those gold stars!
However, it wasn’t all unicorns and rainbows… when Mateo was born at 9 pounds, 1 ounce, he was considered a “big baby” and his blood sugar was low at birth. These are both common issues for babies of diabetics, which was reiterated to me over and over when he went to the NICU. The nurses and doctors continually referred to him as a “diabetic baby” which was like a dagger to my heart each time. I felt like I’d failed this time around, since Sienna didn’t deal with these complications. In the end, the hospital was being overly cautious in keeping him in the NICU for a week when he was strong and healthy. We like to tell Teo that, since he was so much bigger than the other babies in the NICU, it “looked like he ate the other babies!”.
A few years after Teo was born I took a break from wearing an insulin pump because I was tired of being tethered to it all the time. My inclination towards order and routine serves me well and I happen to not need very much insulin, so using multiple daily injections (MDI) works for me. One of the blessings of having diabetes in this day and age is the many options for managing blood sugar. I’ve liked the ability to change up my management to reinvigorate my focus and motivation.
About a year ago, I had a huge mental breakthrough with how to interpret the data from my Dexcom continuous glucose monitor (CGM). I’ve worn it consistently ever since and it really has helped me manage my blood sugar more easily. My family can attest that I still have moments when stubborn highs frustrate me and trigger feelings of failure, but they are few and far between.
Currently, I’m in the process of getting back on an insulin pump. The new technology involves integration with the CGM to provide a “closed loop” of sorts, which allows the pump to correct highs and prevent some lows by automatically giving a correction dose or reducing the basal rate based on the CGM data. I’m mostly looking for this to help with overnight highs that are more difficult to manage with injections. I’ll write more about this system as I transition to it, because I imagine it will trigger a lot of emotional challenges as I release “control” to the pump.
This milestone of 30 years of diabetes has passed and I woke up today to manage my diabetes again. It’s always there. My blood sugar always needs to be considered. There really is no day off from diabetes. But, for all the strife and struggle its brought to my life, it’s also encouraged me to each healthfully, exercise regularly, and generally prioritize my health. My feelings toward diabetes are complicated and really span the entire spectrum of emotions. There are times its a source of pride and accomplishment, times I hate it for all the hassle and feelings of failure it triggers, and many times when its just there, quietly running in the background, not causing any particular feelings.
Now I’m off to live my life, with diabetes just along for the ride.