A ten year review, thank-you!

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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.

2009

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.

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A wonderful piece Terry!
And this piece is and has been my saving!
Thank you,
Thank all of you who strive to assist with gracious words, positive sharing and keen insight!

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We are so lucky to have you here! To many more years of learning and growing together.

:grinning::partying_face:

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Happy anniversary @Terry4!

Your contributions are and have been a god-send to myself and countless others! Thank you for 10 years of sharing yourself with all of us!

And ‘here, here’, echoing what @Mila said, “to many more years of learning and growing together.”

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Happy Anniversary @Terry4!

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Thank you so much for your wonderfully balanced and considerate posts. They have certainly helped me achieve my goals in a big way and I always look forward to your analysis and insights. We all look forward to hearing from you often in the next 10 years!!!

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@NatureOrbs, thank-you for your kind words. Retaining personal authenticity as you make your point online without injuring or offending anyone is no easy task.

I think much of the misunderstanding and hurt feelings that arise in support forums like this are due to the speedy nature of the environment. We don’t think about our response for very long and spend even less time putting our ideas into words. It seems most of us are short on time and we must compromise somewhere to get our daily tasks done.

I’ve found that politeness and using qualifying words like, “like, sometimes, often, maybe, and perhaps” can soften what otherwise might read like an extreme position.

I’ve recently discovered that when I’m feeling emotional about a post, one that rubs me the wrong way, I’ll first consider whether I should respond at all. If I delay my comment, it often gets better with time.

Asking a sincere question of someone with a different point of view can often get your underlying sentiment across with better effect. That tactic is informed by the wisdom, “Seek first to understand, then to be understood.” That’s wisdom I need to employ better.

@Mila, this forum is lucky to have you here, too. I like your consistent effort to raise stories that impact out community. You provide grist for our discussions and provide important diabetes news stories to members here.

Parents of children with diabetes have unique skill-sets that adults with diabetes do not. You have a whole other layer of social/parenting complexity to lay on top of an already complex topic like diabetes.

And just when you start to get good at it, your child grows up and moves out! Of course, you’ll always be the parent, but your time on the front-lines of diabetes management usually comes to an end. That’s both a strange and wonderful concept to me!

@Tapestry, I’ve enjoyed reading many of your comments over the years. Continuing to learn is a key aspect of any art like treating diabetes. Diabetes is dynamic and using a solution that worked yesterday and fully expecting it to work today can set up endless frustration. Learning from each other is our secret weapon!

Thank-you, @El_Ver.

I appreciate your comment, @CJ114. I’ve learned from your words, too.

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I discovered yesterday that another member also joined TuD on the exact same day as me, July 18, 2009. It’s highly coincidental that @Helmut shares the same join date. I’ve enjoyed reading his comments over the years.

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Congratulations on your ten-year anniversary. It’s members like you who have kept me coming back to TuD for 12 years now.

My diabetes experience has also changed a lot over my time of membership.

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Congrats on your anniversary Terry!!

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Happy Anniversary @Terry4!
I always look forward to reading your posts. I have learned a lot from you. I started using the 14 day Clarity report after you recommended it. You got me interesting in looping and now I am on OmniLoop. I startled tackling my absorption problem after your recent post.
Please keep sharing your valuable insights. Your contributions make a big difference.

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Terry, I want to thank you for offering me support and kindness even though I talk about the merits of another way of eating. Once you realized that I wasn’t a flake, you have always been supportive. I know of another member who has blocked my posts, and he still says inaccurate things about me. I appreciate the fact that you haven’t. I have learned from you more of how to support others who question my eating and even truthfulness at times. I am not trying to get on anybody’s nerves. Like you posted this morning, the science isn’t all in yet and unfortunately might not be in our lifetimes. I never thought I would change from low carb and I don’t expect to change from low fat and plant based, but I am open to it if my body complains or if I read compelling scientific literature. Life is certainly a learning process.

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In my life, I’ve never been much of a joiner. My 10 year participation in this community is an outlier for me and I’ve learned much about myself and other people.

One belief that I hold is that any organization that believes, and requires its members to believe, that it is the only one true way of thinking raises red flags for me. I don’t want to live in a group of true believers. It’s one of the reasons I’ve not been successful with religious affiliation. True believers often find themselves enmeshed in a cult led by corrupt power addicts.

Not being an avid sports fan, I’ve been surprised by my active interest in the US women’s national soccer team. I think their success as a team resides in allowing each person enough latitude to fully engage their own unique strengths while happily supporting the larger team cause.

They are a team of talented individuals who can showcase each of their strengths yet each person concludes that their combined effort is much much stronger when they focus on common goals.

I do believe that successful groups permit and promote individual variation and that recognition of diversity makes everyone better.

Thank-you for bringing your unique story to our community. Eating choices are such a touchy topic. Even talking about the topic raises a spectrum of emotions that makes genuine communication hard. I’d add diet choices to politics and religion to the list of topics best avoided in polite company.

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I agree whole heartedly with everything you just wrote and share many of the same feelings. I certainly couldn’t have written those words so eloquently though. Thanks Terry.

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Thanks @Terry4 for all you’ve done here over the last 10 years. I joined TuD a bit later after spending about a year on the ADA forum. I was active for the first few years but mostly lurk now. It’s amazing how much the technology has changed and continues to change. When I was diagnosed in 2008, CGMs were still not considered ready for prime time and there were many debates (at least on the ADA site) about whether pumping was really worth it.

The discussions of food may be less fierce than a few years ago but as someone who eats around 130g of net carbs per day with good success I still bristle when some - certainly not you - start going on about how very low carb/keto is the only way to go. An old slogan which deserves to come back is “Eat to Your Meter”.

We also should remember that many many many people with diabetes - especially low income T2s - get next to no education or training. It’s a good thing that some of us can stay comfortably under 6. For many of the under served, getting under 7 is almost a utopian goal.

Take care,

Maurie

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Thanks for making your comment, Maurie. Eat to your meter was something I learned at this site, a sentiment usually embraced by T2Ds. It is a brilliant and concise truth. If that’s the only thing a newly diagnosed person retained from their initial training, it would be good enough.

I agree that education, especially for lower socio-economic T2Ds, is sorely lacking in much of the world. The whole idea that T2D is somehow easier to manage is flawed to my way of thinking. Sure, it’s much different from the essential need for external insulin that T1Ds must deal with, trying to manage with diet, exercise, and some oral meds is not easy, at all.

People with T2D also must live with the grossly unfair social burden of blame and shame that our culture unfairly exacts. This very shame and blame often isolates people and strands them from effecting appropriate treatment.

Almost everything I’ve learned about T2D, I’ve learned on this forum. I knew next to nothing about it ten years ago.

Again, thanks for ditching your “lurking mode” to make your important points!

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Congratulations on 10 years! And may you have a wonderful next 10 years too!
You have been a great help to many people!

I actually believe that education is lacking all income brackets, in both T1 and T2’s. I think you get lucky by what doctor you get and maybe where you live. Actually I guess I have to say education is lacking in the medical field too.

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A lovely read, Terry4 :smiling_face_with_three_hearts:

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How does one find out more about the “loop” system? Thanks and congrats on your success.

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@DE1, what pump and CGM are you using now?