The little slice of cake icon that appeared next to my screen name this morning reminds me that today is the anniversary of when I first joined TuDiabetes. Turns out it’s the 10th anniversary.
I actually started reading on this site a few years before but chose to remain silent and enjoy the information being shared and even the controversy, much of of it surrounding a carb-limited way of eating.
Looking back ten years provides an amazing contrast in how different I was in my diabetes technology usage and overall attitude towards diabetes treatment in general. I’m going to share some of my actual A1c numbers to illustrate how my diabetes journey has changed over the years as well as how my participation in the diabetes online community has benefitted me. I don’t mean for any of my A1c reporting to hurt or intimidate others. I’m just trying to keep it real.
Back in July, 2009, my records show an A1c of 7.3%. I was using a one-year old Animas Ping pump, a new technology at the time. It was known for its wireless remote glucose meter that could dose insulin without touching the pump.
A1c’s for context, not meant to injure
My A1c history showed 6% range numbers for many of my early years (diagnosed 1984) but the trend started to rise and in late 2004 crossed the 7.0% threshold for the first time. From 2004 to 2009, my A1c’s ranged from 7.0% to 8.2%.
I remember that I had slowly gained some weight, about 20 pounds, and my total daily insulin usage doubled during that time. I knew nothing about insulin resistance in T1D, thinking it was limited to people with T2D. My blood sugar was out of control and I was frantically trying to find out why.
My way of eating was like what most people ate. It was high carb, probably 200-300 grams/day and high fat as well. I challenged my endocrinologist at the time to help me figure out why my diabetes had taken such a poor turn. He did prescribe some type 2 meds but the gastric distress they caused me made me quickly drop them. He never once suggested that I change my style of eating. In my own mind, I failed to make the connection between carbohydrates and high blood suagrs.
I changed doctors (3x/5 years) in the hope that a fresh set of clinician eyes would make an insightful breakthrough and change the trajectory of this slow motion metabolic train wreck. At one point I requested my doctor to order an MRI of my pituitary gland since I thought, after consulting Dr. Google, that I might have a pituitary cancer.
I was ignorant about insulin resistance in T1D
I was flailing about for answers and felt miserable. My brain was in a constant state of fog and my blood must have been like syrup in my blood vessels.
My best guess is that I started lurking on the TuD site in about 2007. There was much conflict at that time about people’s positions on using carb-limits to help treat their diabetes. Things got heated and I’m sure people left the community due to some of those discussions. But I was watching and reading and learning.
My first CGM
In September 2009, I started using a Dexcom 7+ CGM. That technology amazed me then and still does. While I was fascinated with the every five minute glucose updates, I did not really use that technology well until I started to limit carbs three years later and see just how much my carb consumption undermined the quality of my life. CGM use allowed me to drop my A1c in the 2009-2016 era from the low 7% range to the low 6% range.
As much as I was impressed with the positive reports of people online who limited carbs with great blood sugar success, I couldn’t fathom that I could actually implement what seemed like an unthinkable lifestyle. How could I ever give up eating my beloved bagels, pasta, and potatoes?
Slow and reluctant to change
It took me five years to actually make that leap. Five years!!! In 2012, I received a gastroparesis diagnosis. It was that event that made me finally take full ownership of my diabetes and commit to doing whatever it took to change the destructive diabetes path I was on.
That commitment was marked by my decision to limit my carb intake. I’ve written many times about the success I enjoyed but I recap for those newcomers who may not be familiar with my story. I reduced my daily carb intake to < 30 grams. Within about 90 days, I lost 25 pounds or about 14% of my weight.
My total daily dose of insulin was cut from 80 to 40 units. My blood sugar control returned while my glucose variability came way down. I took up daily exercise and that helped, too. I felt better, enjoyed more energy, and started to feel more hopeful about avoiding some of the more serious long-term diabetes complications.
Loop changes everything
Three years ago, in 2016, another TuD member offered to mentor my entrance into using an automated insulin dosing system. I started out attempting to construct an OpenAPS system and my progress was slow. My mentor suggested that I try a new system that had just appeared and people were giving glowing reports. This new system was called Loop.
Loop, combined with a carb-limited way of eating and a daily walking habit radically improved my health. I can’t imagine living without the help that this system provides, every five minutes, especially when asleep. Loop has allowed me to drop my A1c’s into the lower 5% range, something I’ve never considered possible before. And it’s done that while cutting my overall effort and attention in half.
The TuD tonic
This community has played an important role in improving my health. It’s given me great ideas to try and has encouraged me to do my own diabetes treatment experiments. TuD helped me take on full ownership of my diabetes and that has made a huge difference to me.
These last ten years have shown me that the psycho-social aspects of living with diabetes 24/7 are best understood, not by doctors, but my people like us who understand diabetes down to the bone. That flicker of understanding, that kind resonance and empathy we give each other here sustains and fuels the spirit necessary for the long fight.
Thank-you to everyone who has helped me along the way! My attempt to give back to this community has helped bring meaning to my life as I now live in my retirement years. I hope that others have gained some emotional sustenance from all that I’ve written here over the years. This community is special to me.