diabetes distress | Test Guess and Go

I purchased my first Tandem X2 pump in December 2016. Shortly after that in April 2017 I transitioned to Medicare. Thus when my original pump went out of warranty in early December 2020, I was free to choose a new pump. I am sad that there are not more pump choices these days. I hated Omnipod and it is a poor financial choice under Medicare. I liked my Medtronic pumps ways back when, but I would never abandon Dexcom for Medtronic sensors. So it is Tandem again. I was not unhappy to continue with Tandem but I was sad to miss the excitement of a new D-device, because the new one is the same as the old one.

But not entirely.

I had the choice of purchasing a Tandem X2 pump with the Control IQ software or a Tandem X2 pump with the older Basal IQ software. So I chose Basal IQ and I am now in the unique position of being able to choose between Basal IQ and Control IQ depending on which pump I am using.

I have never been completely satisfied with Control IQ and chafe at target ranges that are higher than I prefer and significant insulin suspensions that result in highs later on. Basal IQ is much quicker to resume insulin after suspensions and I was excited to get back to it. Initially I was happy with somewhat better BG readings and more control over my pump behavior.

But after a month, I chose to go back to Control IQ today.

Why?

One of the reasons is minor. I really missed the automatic population of my sensor reading when I was bolusing. Somehow it has been a step backwards (okay, I am lazy!) to have to type in the number. Minor, but significant.

Another reason is that my initial excitement and honeymoon period with Basal IQ ended quickly and I wasn’t doing better with it than with Control IQ.

But mostly I missed the constant basal adjustments that Control IQ makes to tweak my blood glucose. (Please note that I use Sleep Mode 24/7 so I don’t get automatic boluses by Control IQ.) Because our infused insulin is slow, slow, slow, these adjustments don’t work as quickly as my impatient self would hope, but they do help. Control IQ gives me better and more consistent morning wake-up numbers. It also allows me to occasionally forget about diabetes when I hike and play golf.

I have never figured out “perfect” pump settings with Control IQ and previously took an injection of Lantus every evening to give me insulin that Control IQ couldn’t take away. https://testguessandgo.com/2020/09/25/going-untethered-with-control-iq/ That worked well but I have not missed the daily 7:30PM phone alarm beeping “Time to take a shot, Laddie!” So I am going to try to do without the untethered regimen, but that remains to be determined.

I have a history of my doctors thinking I am doing great regardless of my diabetes regimen. I was one of the last Type 1 patients to start Lantus because my world-renowned endocrinologist thought I was doing well on NPH. During the 2015 Blog Week (remember Blog Week?!?), I wrote that the biggest improvement in my diabetes care was the result of an internal medicine doctor switching me to Lantus. So much for world-renowned endocrinologists….

https://testguessandgo.com/2015/05/14/my-blue-ribbon-first-place-change/

That being said, I think that I am capable of getting the same A1c on injections, pumping without sensors, pumping with sensors, Basal IQ, and Control IQ. I truly believe that I am safer with sensors, but I can get reasonable BG numbers without them. Not completely true, because there would be some bad lows. But what I truly want is easier diabetes and that seems to be an elusive goal.

The biggest weakness in all of my regimens is “ME.” Imperfect me, who works hard at diabetes every day, but who constantly makes less than optimal decisions. Second glass of wine resulting in too many post-dinner cookies. Thinking there is a way to successfully bolus for pizza or Kraft Macaroni ’N Cheese. Buying a Diet Coke at a convenience store and being too lazy to check to see if it is really regular Coke. (It happened this week. A perfect flatline in the 90’s up to the mid-200’s in 20 minutes.) There is no end to the ways to screw up. And I am a master at thinking WTH as I muddle through my days.

But WAIT!!!

I am not perfect but the real culprit is TYPE 1 DIABETES. It is amazing how incredibly difficult it is to control blood sugar without a functioning pancreas. When I make good decisions, I get a bad pump site. I wake up at a good number and don’t do anything “wrong,” but my BG soars today while yesterday it stayed in target range. I am a senior with skin and tissue issues that sometimes rebel at infusion sets and adhesives. I am really smart and experienced, but sometimes I have no idea what is causing highs and lows. My lab tests confirm that my body makes zero insulin and this is hard.

I am very cognizant of the fact that the more my insulins and technology improve, the more I raise my expectations of what my diabetes numbers should be. So I am always falling short.

I think that once again I am writing about diabetes distress. My endocrinologist is very satisfied with my diabetes numbers. She believes that at my age (68) with 44 years of diabetes, my Dexcom tracings are perfect. And I am really, really, mostly, mostly okay. But I could do better.

By switching back to Control IQ, I am going to work to accept the help it gives me and not stress over the limitations of the algorithm. And the limitations of my insulin. And the limitations of my behavior.

My old pump has battery issues and ultimately I will have to decide whether to update the new pump to Control IQ. But right now I am happy to have CHOICE. I may choose to go back to Basal IQ on the new pump next week. I may choose to stay with Control IQ on the old pump.

I like choice.

Unfortunately one thing I don’t have choice about is having diabetes….

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.