GS drove the thirty-minute drive to my doctor’s appointment so that I could sidestep stressing about the freeway traffic. Yet as I sat in the passenger seat, I could feel my anxiety build thinking about the impending appointment. My neck tightened. My shoulders tightened. I could feel subtle pressure in my head. That led to nausea. When I get anxious or stressed I decide to take shallow breaths with no rhythm. Good strategy, right? I focused on remembering to breathe and GS rubbed my knee and maneuvered the freeway traffic.
One of the things I love about GS is that he has never asked me a litany of questions about diabetes or celiac disease. Diabetes and celiac disease are integrated into my lifestyle and therefore, something I prefer to talk about only on an as needed basis. I appreciate that in moments of stress or anxiety with diabetes or celiac he asks one question, “Is there anything I can do to help?”
When I was first diagnosed, one of my biggest fears was that others would define me by these chronic conditions. I didn’t want people to think of me as “Katie the diabetic” or even worse “Katie the diabetic with celiac”, I just wanted to be me. Diabetes and celiac disease are only a small part of me. Yet if I’m having a rough week or month managing either one or both of them, they start to feel like they do define me. This is what I’ve been feeling for several weeks.
For the last six weeks my blood glucose readings have been three to four times the target range. It began when I decided that I was not comfortable with the gluten-free food offerings at the diabetes training I attended in June. I left the training early. Although I felt empowered in taking care of my health, I was disappointed about missing out on an opportunity to experience bonding with a community of people with type 1 diabetes. Little did I realize there was an unexpected twist about to unfold.
Since leaving the training I have accidentally ingested gluten twice. Yes, you heard me right, twice. By accident! It’s ironic not only because I left the training to avoid the health risk, but also because I practice meticulous care and good communication in navigating my gluten-free lifestyle. The first incident happened after kissing GS. He had brushed his teeth and washed his face after drinking some home-brewed beer made by my brother-in-law. We thought we were safe since he had taken precautions, but I knew I was in trouble when I could taste beer on his lips.
The second incident happened at a work function. Everyone brought “gluten-free” food yet somehow I got really sick for five straight days after the barbeque and had four weeks of elevated blood sugars. My guess is that the food was gluten-free but there was cross-contamination. Maybe a cutting board was not completely clean or a salad dressing was made using a condiment that had remnants of breadcrumbs from a previously made sandwich. Cross contamination for someone with celiac is much harder to avoid than gluten itself. There are countless variables.
For the last two months I have been thinking I will wait to post on the blog when I am feeling better, when diabetes and celiac disease are back to feeling like a small part of me, not the definition of me. I keep thinking of reasons to postpone writing. I will wait until I have a fully functional replacement insulin pump. I will wait until I have this summer head cold beat. I will wait until my blood sugars stop swinging from 389 to 42. But, what good does waiting do?
As I pondered this question, I chose to revisit an article by Catherine Price titled, “Thinking About Diabetes With Every Bite”. It was through her honesty in hating diabetes and wishing that she could take a vacation from it that I found myself not feeling alone in the ups and down with diabetes and the desire of wanting to get it right. For the last two days I keep repeating one of the closing sentences in her article as a mantra, “The best I can do in the meantime is to control my disease without allowing it to control me…” So here I am, no longer waiting.