I remember going back-to-school shopping with my grandmother and my mom, as was our annual tradition. I was 12 years old, starting sixth grade, and was wearing size 7-8 clothes (in girls’ sizes). I was a little proud, because I’d listened to enough grown-up women on TV and stuff to think that going down a size was a good thing. Fortunately, my mom knew better.
We went to see my pediatrician on September 3, 1999, and after listening to my mom rattle off my symptoms – weight loss, frequent urination (about 20 times per day at that point), ravenous appetite despite the weight loss, seemingly insatiable thirst – I remember the compassion in his eyes when he looked at her and said, “You know what it is, don’t you?” I don’t remember which of them was the first to say the word that would change my life irrevocably, though.
I had joined the ranks of approximately 1,250,000 Americans with Type 1 Diabetes, an autoimmune disorder in which a person (usually a child)’s immune system attacks their pancreas and permanently destroys its ability to make insulin. And despite what popular memes and hashtags would have you believe, it is not caused by eating mass amounts of dessert!
We went home and packed some bags, then checked into our local Children’s Hospital to learn how to manage my new incurable condition. That night at about 7:30pm, a nurse gave me my first injection of insulin. The next morning, the little girl whose nurses had always joked that she *could be in horror movies because of her *ahem* dramatic response to shots… gave herself her second ever insulin shot. I thought that if I was going to live with this forever, I would eventually have to give most of my shots myself, and I may as well start and get used to it right away.
While in the hospital that weekend, we learned a dizzying amount about how insulin and food work together in the human body, and how we would try to mimic that as best we could. We were warned of the potential complications of poor control – leaking blood vessels in my eyes that could lead to blindness, nerve damage in my extremities that could lead to amputations, kidney damage, heart disease, difficulty fighting infections, difficult pregnancies. But we were also given hope that advancements were being made all the time and that people can lead nearly normal (albeit approximately 13 years shorter) lives while managing their Type 1 Diabetes.
Because the process of taking over for my pancreas involves a delicate balance of several factors, and my needs can change suddenly and for no apparent reason, control is incredibly difficult to achieve and maintain. It’s frustrating and scary to know that I can be doing everything “right” and still end up horribly sick… like a couple months ago when a stomach virus that would make most people miserable for a day or two landed me in an ICU, and the effects lingered for weeks.
When I was a kid, my treatment consisted of three meals and three or four snacks (at different ages) at precise times of day, measured and carbohydrate counted and balanced, two or three shots per day of two different types of insulin (a long acting and short acting type), and 6-8 finger stick blood sugar tests. Now, I use an insulin pump and sometimes a continuous glucose monitor (CGM). The pump allows me to go three or so days between needles (only when I need to insert a new cannula under my skin – think of it like an IV that goes into fat instead of a vein), and it also gives me more freedom to eat what I want when I want. The CGM is a small wire I put into my skin once a week, that measures my blood sugar every five minutes and transmits the data to my pump, which displays the info on a nifty graph. I still need to test my own blood sugar before treating a high or low blood sugar based on the CGM, because it’s not always accurate, but it can alert me if my blood sugar is heading a dangerous direction (allowing me to prevent it from getting worse), and it provides trend data that helps me make decisions about adjusting my own doses.
I’m so thankful for the advances in technology that let me live with a little more freedom, but diabetes is still constantly on my mind. I still live with the fear of complications, and with the fact that my kids each have about a 1% chance of developing Type 1 Diabetes themselves. I pray daily for a cure, because the idea of living with this forever is exhausting, and insulin is just life support after all.
November is National Diabetes Month, and November 14 is World Diabetes Day. Would you please join me in this prayer this month, and maybe even share this post to help raise awareness about what diabetes really looks like for over a million Americans like me – and help break the “lazy over-eater” stigma perpetuated by memes and hashtags? It would mean the world to me!