I have been lucky throughout most of my life as a person with diabetes (PWD) to have some pretty incredible insurance. Diabetes is expensive and navigating insurance benefits can be confusing and frustrating on the best of days. Yes, I pay a staggering amount of money for premiums, copays, and deductibles, but it is far less than I would if I had subpar coverage – or none at all.
Of course it can be exasperating to pay this much money and still have to be very active in your advocacy. For example, right now I am trying to get a refill for transmitters necessary to make my continuous glucose monitor (CGM) work. I am constantly checking in with my doctor’s office to get necessary paperwork, contacting my insurance company to push the approval along, and making sure that the supplier has all the information they need. Hold times on the phone with each company can take over an hour a day, so sometimes it takes several weeks to get the supplies in my hands. Fortunately, many of these companies are beginning to embrace social media and technology, so the process is slowly becoming more consumer friendly.
I could talk about how frustrating insurance billing is as a patient – even though I have professional experience working in medical billing. Case in point, I recently received a bill for my last endocrinologist visit where I had an HbA1c test and annual labs done for kidney and thyroid function, cholesterol, etc. My insurance covered the tests, but not the blood draw required to run those tests. I’m left to question how exactly one would maneuver this situation. But time spent on questioning is more time on hold that I can never get back. And most likely, whether or not I agree with their practices isn’t of much concern to my insurance company.
I’m certainly not new to the nuances of insurance practices, nor am I new to life with diabetes. Like many people I’ve spoken with regarding their type 1 diabetes, my diagnosis was made in an emergency room. The finger stick read in the 500s. A nurse told me I had diabetes but she wasn’t sure which type and that I should call an endocrinologist the next day. Bear in mind, I was in my mid-twenties and I didn’t present in diabetic ketoacidosis, so they didn’t keep me overnight or provide me with much information.
The next day I was sitting at the Endocrinology Clinic at my local hospital. During that first visit I didn’t meet an endocrinologist; instead, I met a Certified Diabetes Educator (CDE). My CDE introduced me to the basics of diabetes, without trying to overwhelm me with more information than I could absorb at go. She explained carb counting and taught me how to give myself an injection. We discussed low blood sugars and how to treat them. It was a one hour crash course in diabetes.
My first meeting with an endocrinologist came a few weeks later. My first endocrinologist was kind and sympathetic to my new diagnosis, and she was thorough in her physical exam. We didn’t discuss insulin dosing, other than to make sure my prescription was written correctly. Diabetes was of concern, but the mechanics of diabetes were not the chief concern compared to my overall well-being as a person living with diabetes.
Over the years, my endocrinologist and my CDE have both helped me with my diabetes management, but in different ways. My endocrinologist helped me maintain my physical health. Meanwhile, my CDE helped me with the mental aspects such as diabetes math, searching for patterns, and even discussing burnout. When I began using an insulin pump for the first time, it was my CDE who provided all of the education. I did my first CGM sensor insertion in her office. I have pored over graphs of blood sugars seeking answers to middle of the night anomalies. I have cried with her over symptoms no one else seemed concerned about.
Mostly, going to my CDE helps me stay accountable in my own care. Perhaps it’s my Type A personality or my drive for perfection that makes me feel this way. Regardless, I actually find myself looking forward to my CDE appointments. My CDE is my cheerleader. She rallies behind me when burnout strikes. She constantly guides me to be less critical of myself. She gives me perspective, and reminds me that, in the grand scheme of things, I’m doing a really good job managing this illness.
Those words mean everything to me. I seek the validation she provides and it gives me the motivation to keep moving forward. I am fortunate to have the resources and health insurance that allow me to have these regular appointments with my CDE and endocrinologist.
Diabetes gives me plenty of reasons to get sad or mad or frustrated. I definitely do not need to go in search of those things. But diabetes has also given me a connection to some wonderful people I would have never met without it. I consider my CDE and endocrinologist to be two of those people. This life with diabetes has given me an opportunity to become my own best advocate, and I am so thankful for the health insurance that I have that allows me to have a wonderful health care team behind me.
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