The days following my diagnosis were rough, just like anybody’s would be after hearing something so life changing. My dad was in denial (30 years later, I think he still is!), my mom stepped right into mother bear mode, and my sister showed me for the first time that she cared about me. That may sound harsh, but we were five years apart, and up until that point, I was the pesky little sister who read her diary, wanted to hang out with her when she had friends over, and listened in on her phone conversations.
When I say my mom stepped into mother bear mode, it is wildly understated. She learned all she could about a disease she knew little about, she set me up in group sessions with other kids with diabetes, she found a diabetes summer camp, and she educated all my friends’ parents knowing I would have sleepovers at their houses and be in their care at times. What she didn’t do was make me feel different or that there were things I couldn’t do. I still played sports, I still had sleepovers, I still felt like a regular kid, only now I had to take shots everyday, check my blood sugar multiple times a day, and change my relationship with food.
The hospital stay was a blur. So much to learn in such little time. It was like having a baby for the first time, then you have to take that baby home and are expected to know what to do with it. We soaked in what we could and learned how to give shots to oranges. In case you are wondering, oranges feel oddly like flesh when you stick a needle into them. My mom had it down. Me, not so much. It would be another couple of months before I was able to put a needle into my own body. Even after I had been taking shots for years, I still had to put the needle on my skin and push very slowly. I never quite conquered the throw it in like a dart thing!
With everything we had to learn, the most difficult to navigate was the dreaded Honeymoon Phase. When you are first diagnosed with Type 1 diabetes, some of your beta cells are hanging on for dear life! They are suffering terribly but not completely dead, yet. So, after diagnosis when your body starts receiving artificial insulin, those not-yet-destroyed beta cells perk back up and start acting like their good old selves, producing just a little bit of insulin. That may sound like a plus, but when you are trying to navigate the ins and outs of a new disease, the last thing you need to worry about is, I wonder if my body is going to produce insulin today? It’s hard enough to figure out how much insulin your body needs let alone how much it may need when and if your pancreas decides to work, if just a little. This phase could last days, weeks, months, or years. You know, because there is nothing more fun than thinking you got your dosage just right, then whamm-o, here comes more self-produced insulin!
Back home after diagnosis was a bit strange. I had all this attention on me now, and not just the doting kind. It drove me crazy (and does to this day!) to hear people say, “Are you allowed to eat that?” and “I thought you weren’t supposed to eat sugar.” It felt like everyone was given an unspoken permission to judge everything I was doing and eating. I know most people meant well, but it was and still is one of those things that just crawls up my spine when I hear it.
Around our house, things had changed. All the good food was gone (remember, I was 12, the good food was anything that was not healthy in any way) and every meal had all the “exchanges” I was supposed to eat. In 1988, you didn’t count carbs, you counted exchanges and each meal had to have a certain amount of each exchange. Breakfast was usually two bread exchanges, one fruit exchange, one milk exchange, and one meat exchange. That translated to two pieces of toast, a glass of juice, a glass of milk, and a scrambled egg. Some days, I just didn’t want to have all that for breakfast, some days I wanted more. I started to hate diabetes because I hated being told what I could and couldn’t eat. What started as a disease that didn’t make me feel that different slowly became something that made me feel alone.