My Journey As a Diabetes Educator
Originally published on www.cfroundtable.org on September 4, 2019
Fourteen years ago, two pink lines, undeniable confirmation of my launch into motherhood. I had pictured her since I was a child. Perfect, beautiful and healthy.
Approaching what I considered to be the “safe zone” of pregnancy, I received a call, an unknown voice sputtered out the words, gestational diabetes (GDM), confusion flooded me. I had a slight frame and had made overly healthy food choices since the moment I realized I was pregnant- with the hopes to offer my baby the best start in life. My fears of hyperglycemia and its unfair impact on my daughter invaded my peaceful pregnancy. I also knew that my having GD increased her chances for Type 2 Diabetes exponentially. By the time I gave birth, I had gained merely 20 pounds, was on insulin full time and having “stress tests” three times a week. I felt overwhelmed with guilt, like I had somehow caused this, that I had failed this little one who was depending on me.
Maylie entered the world on February 27, 2006, with the same fight that she embodies today. A natural childbirth was my goal, but due to my GDM, she was large for my small frame, eight pounds, 2 ounces. On the 37th hour of labor, her heart rate began to decrease, and alarms started sounding. The doctor entered swiftly and with a look of intensity I had not seen before, she informed me that while she supported my decision for a natural childbirth, however, if I wanted a healthy baby, I needed western medicine to intervene. The room flooded with people as they pulled Maylie from my body. Her first hour was a whirlwind of machines and repeated Apgar tests. An hour later my beautiful baby girl was placed into my arms.
Cystic Fibrosis was not a part of newborn screening at Stanford in 2006. Maylie went through three years of pulmonary and GI distress before we realized the gravity of her confusing symptoms. The diagnosis of CF was a relief, there was finally a name and a treatment for the agony that she had been enduring.
I dove headfirst into understanding CF and how to best support my little girl. I read everything I could get my hands on, I took my daughter to Sweden to learn other forms of airway clearance, and most importantly, I reached out to adults thriving with CF, who became my heroes and mentors throughout this journey. I realized within weeks of my daughter’s diagnosis that this was not only her community, but mine as well. I felt obligated to find a way to support the adults who had given me hope when it felt like there was none left to find. That obligation soon turned to honor, as I repeatedly crossed paths with the most inspiring people I had ever met, all holding the noble title of “living with CF.” I just needed to find my niche, a way in which I could support this incredible community that my daughter was an honorary member of.
It was a warm sunny day in February in 2016, uncharacteristic to say the least for Montana. I was standing upstairs in my daughters’ room when the phone rang. I had been practicing my mindfulness all day, awaiting the results of her OGTT that morning. I am used to seeing the clinic number appear on my phone, confirming appointments, rescheduling, following up on tests, however, this was the pulmonologists cell phone. He was out of town. My heart stopped, I knew immediately that he wanted to be the one to give me the news that Maylie had CFRD. I remember exactly what I was wearing, the color of the sky and the touch of the breeze that blew through the open window. But in that moment, my mind clouded over, I could not retain anything that was said during those five minutes. I hung up and sobbed. CF is hard, CFRD makes it infinitely harder. I grieved the CFRD diagnosis, maybe even more so than the CF diagnosis, because I was looking for an answer when I had a child who was sick, without explanation. However, at age 10, seven years post CF diagnosis, I felt like I finally knew what I was doing, that all changed with one phone call.
I spent the first few months in a constant state of worry over everything, I knew enough to be scared, but not enough to be in control. I had a child with severe needle phobia who was now insulin dependent. I did not know how to count carbohydrates or what a correction factor was and how to use it without “stacking,” I did not even know what priming a pen was. I felt so helpless to teach her how to manage this new disease.
Then one day, that dark cloud that drifted over my world in February seemed to lift and I remembered how becoming educated in CF empowered me to feel in control of an incredibly complex disease, and I realized that was possible with CFRD as well. I sat down to my computer with a new sense of hope- I would just become educated on CFRD, then I could teach her to manage it. Within a very short period of time, I realized that information on CFRD was not nearly as easy to come by as CF. I emailed professionals whose paths I had crossed asking about where to find CFRD education, and was told by everyone that there really wasn’t anything available. I sat with my ignorance and frustration. And then I realized, if I felt overwhelmed and undereducated about CFRD, there are probably others who feel the same way. Seeing this gap, I realized that there was a path for me. I would utilize Maylie’s incredible endocrinologist, Dr. Colleen Wood, to co-create an education program for the CFRD community. This led to an insatiable hunger for more understanding and greater ability to help our community. I enrolled in the Level II Diabetes Educator course from AADE. I finished that, and realized that if I wanted to be a partner in care, I needed to become a CDE and work with individual’s and their care teams for the best outcomes inn CFRD disease management.
I now work full-time at Attain Health Foundation as a diabetes educator. I offer a 12-week education program that covers all the nuances of CFRD, starting with the pathophysiology of how individuals with CF develop diabetes, to carb counting, self-blood glucose management, sick days, the role of technology in blood sugar management as well as the impact that high blood sugars have on pulmonary disease progression. Our three-month program consists of twelve topics related to CFRD. This information is offered through webinars recorded by experts in the community, a weekly group video discussion about the topic and then 1:1 meetings in my virtual office to educate and empower individuals with CFRD to understand their blood sugars and how to manage them to achieve their best vision of health.
I am so excited and honored to have a new column for CF Roundtable, “Diabetes Specialist.” I look forward to offering education and empowerment around CFRD management. I feel such gratitude to have a role in the CF community, to be able to support the warriors who live with CF, those who have taught me to hope and dream for my daughter.