Diabetes is certainly a journey. The more I learn about it, the more I want to step off this path and onto a new one. So, how do you change the course of such an expensive and frustrating chronic illness?
In the beginning I was a studious and meticulous note taker, attending seminars, conferences, and speaker presentations, all of which were on my calendar and as important to me as my daily blood glucose readings. I prepared a complete three-ring notebook containing all my medical history, lab results/comparisons, and doctor’s notes. It accompanied me on every appointment, sharing pertinent information between doctors. My Diabetes Team was formed.
As the illness progressed, so did the list of medical professionals needed to continue my care – primary care physician, endocrinologist, nephrologist, certified diabetes educator, podiatrist, ophthalmologist, and a PWD mentor (you know your list). I lost about 30 pounds, cleaned up my eating, began exercising and my A1c dropped from 14.4 to 6.0 in a period of approximately 18 months. All good news.
Weight loss occurred quickly in the beginning, but as different drugs were introduced into my routine, the pounds were harder to get off. Carbohydrate adjustments helped offset the rise and fall caused by the drugs, but the daily process left me feeling sluggish and unable to sustain continued weight loss.
The quarterly doctor appointments continued without significant change, until I conducted a side-by-side comparison of my lab results on an Excel spreadsheet, and discovered several outside-of-normal readings, which were disconcerting. There was reason to believe that certain medications were causing distress on my kidneys. It was time to press the issue.
Exactly how do you get off diabetes drugs?
I began questioning everything. Why did I have to be on particular medications? If I could maintain an A1c at 6.0 or under, could I achieve the same results with modified/structured eating, more exercise, and detailed recordkeeping/glucose testing? Who or what program would be available to assist and monitor me while I went through this process? Would medical insurance cover any of these providers, programs or other costs?
I also asked everyone on my team and discovered no structured post-diabetes (yes, I know we are never truly “over” diabetes) education, no emotional support groups, no beautiful four-color brochures filled with information on how to face the challenges, and basically no insurance coverage for this type of success.
So, here I am today, holding steady, yet standing at the fork of the road. Is this all there is?
(Vicki Christensen resides in Tempe, Arizona, and was diagnosed with type 2 diabetes in August 2011. She has become an advocate for change in the diabetes community and would enjoy your comments and suggestions.)