2000-2001 was a year of changes both for me and the world—the new millennium, 9/11 and, for any 12-year-old girl, middle school. I was more than ready for the freedom seventh grade would bring. Turning 12 meant I was only one year away from 13; I would be an official teenager and, once I became bat mitzvah, an official adult. I quickly adjusted to my newfound freedom; although I would never call myself a rebel, I enjoyed pushing boundaries with both my teachers and peers.
December 2000 changed everything. I found myself constantly thirsty, and for some reason craving chocolate milk. I would come home every day and down three glasses of chocolate Ovaltine. In school I was asking multiple times per day to be excused to get a drink of water or use the bathroom. While many Type 1 diabetics experience other symptoms leading up to their diagnosis (weight loss, irritability, nausea, blurred vision), I never got to that point for a very fortunate reason; my mother was a nurse. She noticed how frequently I was drinking and using the bathroom.
The week before winter vacation, the two of us went to my doctor to get my blood sugar checked; it was 500. For reference, a normal blood sugar range is between 70-130. Until this point, I had no idea anything was out of the ordinary. It wasn’t until we were told to go straight to the emergency room that I realized something was wrong. Sitting on a hospital bed clutching my copy of “Harry Potter and the Goblet of Fire,” I heard the words “Type 1 diabetes” for the first time. Actually, that’s not entirely true; I had heard the word “diabetes” once before while reading “The Truth About Stacey,” the third book in The Baby-Sitters Club series. The truth about Stacey was that she felt like a complete outcast because of her diabetes, and she couldn’t eat candy—at least that’s what I remembered.
I was filled in very quickly on what my new diabetic life would look like: three to four finger sticks per day, three to four injections per day, carb counting, scheduled meals, goodbye freedom, goodbye pancreas. It was just like brushing your teeth, they said. My dad packed me a bag and I settled into my hospital room for the week. I thoroughly enjoyed my time in the hospital, mostly because it was the week before Christmas and the children’s ward was frequently visited by Girl Scouts and Santa bringing gifts. Before leaving, I had to prove I could give an insulin injection to an orange. Although I had no problem doing the finger sticks, I was not yet willing to give myself injections. I was released from the hospital four days later, just in time to light candles for the first night of Hanukkah.
I returned to school the day before winter break, which meant every classroom was having its annual Christmas party, in which I could not partake. It was my first sense of being different, and I hated it. One amazing thing is that the year I was diagnosed, I happened to have an English teacher who was also a Type 1 diabetic. When I walked into class, she immediately greeted me with a hug, a diet ginger ale and a bag of sugar-free mints. She made me feel like we were part of an elite club, and I am eternally grateful.
Relying on my parents and school nurses for injections severely limited the independence I had waited so long for. On New Year’s Eve, my plan to sleep over at a friend’s house was thwarted because I couldn’t give myself shots. I remember this night vividly; it was the first time I had really felt the limitations of diabetes, something I have felt so often in the 19 years since. Not going to that sleepover felt like the end of the world. I begrudgingly agreed to go see the movie “Miss Congeniality” with a friend and was home in bed before midnight.
The following month, my mother sat me down to tell me the sleepaway camp where I had spent the last two summers would not let me return. Their reasoning was that they didn’t have a nurse who could accommodate a diabetic. My English teacher had told me about a special camp in the area just for Type 1 diabetics, which hosted various weekend camps throughout the year in addition to their summer camps. After being cast out from a place I had called home for two summers in a row, diabetic camp seemed lame in comparison. So, it was with extreme reluctance that I packed my weekender bag and headed for Clara Barton Camp in North Oxford, Mass.
Throughout my life, when faced with new and unknown opportunities, I have the tendency to have a moment of utter panic. This was one of those times. I remember walking into the dining hall and being overcome with a feeling that I didn’t belong. Everyone seemed to know each other, and I, at age 12 and on my way to 5’9”, clearly stood out. I don’t remember much about that weekend. What I do remember is that feeling lasted only a moment; soon I was welcomed by a group of girls my age and came to the realization that this was just like any other camp.
There were a few differences, obviously—before meals, everyone checked their blood sugars together and gave themselves their insulin shots. My shots, of course, had to be administered by a nurse. Whether it was the support of my peers or the feeling of needing to fit in, it took me exactly one assisted insulin shot before I decided I was ready to do it myself. My diagnosis had taken away my sense of belonging, as well as my independence. I left my first weekend at camp knowing one thing: I was on my way to reclaiming both.
The Truth About Shaney
Unfortunately, it wasn’t that easy. As one of the 1.25 million Americans impacted by diabetes, the disease impacts every aspect of my life. That first year was a hard one. I am incredibly lucky for my supportive parents and friends for getting me through it, friends who came with me to check my blood sugar in the nurse’s office every day before lunch.
A year after my diagnosis, I was fitted with my first insulin pump, which gave me even more freedom. Instead of four insulin shots a day, I would now be hooked up to a constant stream of insulin. I still had to check my blood sugars and manually program the pump to cover meals, but it was a big upgrade. But I took this freedom for granted. I decided that with my little robotic pancreas in tow, I could live my life 100% normally and eat whatever I wanted, including chocolate chip cookies for lunch every day. The more lectures I got from my mother and doctors, the more photos I saw of amputated toes, the more I rebelled. I only used diabetes when I needed it; to call out a substitute when she yelled at me for using my “beeper” in class, or to get more garlic bread during a school trip to Medieval Times.
College brought me even more independence. I was living on my own, and for the first time completely responsible for my own health. Instead of owning this responsibility, I once again ignored it, eating everything I was never allowed to eat at home (hello, Pop-Tarts and Kraft Easy Mac!). My food choices obviously had a negative impact on my blood sugars, and I completely lost control.
During my first year of college, my first cousin Shana, who was also entering her freshman year, got her official diagnosis. Her diagnosis was somewhat of a wake-up call. I had been told by many doctors that diabetes, at least Type 1, was not genetic. This was the first time I remember thinking that my doctors didn’t have all the answers. Over the years as a camper, counselor and eventually assistant director at Clara Barton Camp, I had seen many families in which multiple members had Type 1 diabetes.
Shana’s approach to her diagnosis was different from mine; she worked hard to get her diabetes under control, often calling with questions and concerns. Although I had lived as a diabetic for six years, I felt inadequate compared to her. This, of course, was all my own doing, but I still felt a sense of shame whenever I heard how well she was doing. To me, it appeared that Shana wore her diabetes with a sense of pride. Yes, she had it, but it wasn’t going to define her, and she was going to do everything in her power to control it. It took me many years to not look at this disease as anything more than crippling, something I still struggle with to this day.
Sugar, We’re Going Down
After college I moved to Boston, got my first real apartment and, a few years later, met a boy. Although I had told anyone who would listen that I would be marrying a Christian (I really wanted a Christmas tree), I ended up falling in love with the Jewish boy of my (and my mother’s) dreams. When it came to life goals and dreams, I never focused much on career aspirations. My one goal for literally as long as I can remember was to be a mother. When Matt and I met, I had been working as a nanny. A year into our relationship, I started my first teaching job at JCC Greater Boston. Caring for children felt like it was what I was meant to do, and as my relationship with Matt grew, I often thought of the day when I would have my own.
Why is this important? After Matt and I got married in 2017, I finally had my reason to get my diabetes in control. I had seen various photos and examples (thanks, Mom!) of the terrible birth defects uncontrolled diabetes could cause. I went to my endocrinologist the month after we got married, ready to get my sugars under control. It wasn’t going to be easy, and even my doctors didn’t realize how difficult it was going to be. Years of uncontrolled diabetes had left me with an A1C (average blood sugar over two months) of 11. In order to safely conceive, I was told I needed an A1C of 7 or below. The first change the doctors made was to increase all my basal rates (basals are the steady flow of insulin I receive through my pump). Depending on the time of day, the rates differ.
Because of the increase of insulin and the fact that my blood sugar was coming down after years of being high, I experienced many unfortunate side effects. Besides the 15 pounds I gained within a week, I also began to feel weak and unable to move. This feeling would last a few days until the sugars leveled out. Unfortunately, my basals had to be adjusted many times, and this feeling always followed. I missed a lot of work during this time, and when I forced myself to go anyway, I was completely useless. I was frustrated at my doctors (when I could finally reach someone, no one could tell me why this was happening) and even more frustrated that my blood sugars still weren’t where they needed to be. I became depressed and isolated. Although my sugars were going down, I was now more aware when they were high, a feeling that left me irritable and not enjoyable to be around (sorry, Matt!).
My entire day could be ruined by high blood sugar. I once again felt my world controlled by Type 1 diabetes, and since my doctors had no answers, I felt hopeless. Since the insulin wasn’t seeming to make a difference, I decided to try other lifestyle changes. I dropped birth control and artificial sweeteners (one of my most favorite things) and made sure to exercise every day. I completely changed my diet, first trying Whole30 and then cutting out carbohydrates completely with Keto. To me, it made sense to cut carbohydrates since that’s what the insulin was primarily covering. The changes made a slight difference, but my A1C was still not where it needed to be.
Something From Nothing
What I came to realize is that everything affects your blood sugar, including things you have no control over. Hormones, stress and illness can cause sugar levels to spike. Since my doctors seemed unable to help, I decided to reach out to other diabetics, which I did in the form of a women’s-only diabetic support group. I quickly realized two things: First, I wasn’t alone in my frustrations; many other women were looking for answers. Second, regardless of whether this group had the answers I was looking for, it was still full of women just like me, and that’s something I hadn’t experienced since my days at Clara Barton Camp. I felt better knowing I wasn’t the only one who irrationally screamed at their significant other when their blood sugar was high.
One thing I did notice was how many people recommended a vegan or whole food, plant-based diet. More specifically, they recommended Mastering Diabetes, which was founded by two Type 1 diabetics. They realized that fat was what caused insulin resistance. Omitting things like eggs, dairy and meat and adding complex carbohydrates like potatoes and legumes could actually increase your insulin sensitivity. This meant lower blood sugars and less insulin required.
This idea went against everything I’d been told by my doctors. Carbohydrates were supposed to be limited and fat/protein could be consumed at large. Currently on a Keto diet, I was consuming at least seven eggs per day. There was also the issue that although late into my 20s at this point, I was not a cook. I may have tried a few recipes here and there, but I relied heavily on my husband’s cooking and frozen dinners. Although the idea seemed daunting and would require more food prepping than I’d done in my life, I felt I had nothing to lose by trying it.
One nice thing about this specific program is that it encourages you to take it one meal at a time. The first week, I only had to worry about changing my breakfast. I began prepping fruit bowls for breakfast each morning, and by day three I could already see a huge drop in my sugars. The more my sugars dropped, the less insulin I required. I was eating four servings of fruit and only needed a quarter of the insulin I would have normally needed. After three weeks, my doctor was able to take my basal rates down, and I finally started losing weight. One year after my initial doctor’s visit, my A1C was at last down to 6.7.
Were all my problems solved? No. Was I cured? No. There is no cure for Type 1 diabetes, and as much as we are trying to find one, you can’t make something from nothing. For those who are not fluent in Jewish children’s literature, this is a reference to the modern adaption of a famous Jewish folktale, a story I have found myself relating to a lot.
I will never have a working pancreas. What I do have is my story, and the ability to share it. This disease will continue to impact every part of my life. Although I have finally gained back most of the independence I so badly wanted as a teen, I will most likely always rely on medications to stay alive. I’m sharing this story for American Diabetes Month and World Diabetes Day on Nov. 14 to increase awareness and hopefully help other Type 1 diabetics. It’s because of others sharing their experiences and thinking outside the box that I was able to finally begin to heal and take back my own independence.
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