Tag Archives: type 1 diabetes

Dry January with Diabetes

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I have completed 15 days of Dry January 2023. Dry January began in 2013 as a campaign sponsored by Alcohol Change UK to encourage people to abstain from alcohol for the month of January. Ten years later the number of participants has grown exponentially and people all over the world are supporting each other for 31 days of avoiding drinking and examining their relationship with alcohol.

Dry January is not really related to my diabetes but like with everything else in my life, diabetes always comes along for the ride. 

There are many criteria for determining alcoholism or at least alcohol abuse. An online search for those terms will give you lots of info–maybe more than you want to know. I don’t think that many others look at me and see a problem drinker and I don’t drink enough to get visibly drunk. But I know that I have been drinking more than the weekly wine allowance for women (7 servings @ 5 oz) and it is a fallacy to pretend otherwise.

I can’t really say that I am currently experiencing many negative consequences from my nightly wine. But there is no doubt that alcohol increases my risk for liver disease, breast cancer, pancreatitis, and all sorts of bad things. I have gained unwanted weight in recent years with the empty calories of wine on top of a slowing senior metabolism. Diabetes-wise, I suspect that my problem with overnight high blood sugars is related to the interplay of alcohol and food. For sure I live with self recrimination. 

My drinking history is unremarkable. I drank a little beer in college but not much. My husband and I rarely drank in the early years of our marriage and definitely not at home. When my youngest son played hockey in high school (circa 2000) we started going to bars after games with other parents. That must have been my introduction to wine because I don’t like beer very much. Hard liquor has never been part of my life and because of my Type 1 diabetes, I have rarely ordered anything with mixers. 

So here I am in 2023 drinking too much wine. What happened?

Things changed gradually and daily drinking wasn’t part of my life until 6-7 years ago. Boxed wine likely skewed my quantity control as the spigot of these boxes dispenses a seemingly never-ending supply of delight with no keeping count. I slowly incorporated a glass of wine into my late afternoon regimen. It was so obvious that when I poured a glass of wine at 5:00, the dog knew that it was time for her dinner. But 5:00 often became 4:00 and occasionally earlier. Ironically my blog became a trigger because it’s quite nice to sip wine while writing about diabetes and my journey into seniorhood. Boredom has also been a factor with alcohol being a nice change from a day filled with water and diet soda. The pandemic definitely magnified my boredom with a lot more time at home and sometimes not much to do. And I like the taste of wine. 

Where does diabetes fit into this?

I’ve had Type 1 (autoimmune, insulin-dependent) diabetes for over 46 years. I am relatively healthy with none of the dreaded nerve, eye, kidney, or cardiac complications. But diabetes is not easy and I spend a lot of time not eating things that I would like to eat. Yes, supposedly I can eat whatever I want, but it is a PITA to balance insulin with large quantities of bread, pasta, cereal, rice, sweets, and other higher carb foods. It rarely turns out well. I can drink white wine with at most a minor impact on my blood sugar. One could argue that a glass or two of wine in the late afternoon is better than a bunch of crackers. Ah, sounds like self-delusion.

The biggest physical effect of Dry January on my diabetes has been that my total daily dose of insulin has gone down dramatically. On most days my basal insulin has been reduced by over 25%. My overall blood glucose numbers are improved but I am unsure whether that is because of no wine or just eating less.

The biggest psychological effect of Dry January on my diabetes is that the discipline of alcohol abstinence is making it easier for me to be disciplined with my eating. Frankly I expected that it might go the other direction and that I would eat junk to replace wine  One of my goals this month is to lose a couple of pounds and I hope that the combo of no wine and less food/fewer carbs will make that possible.

A month ago I purchased the Streaks app in anticipation of Dry January. There is nothing better than a phone icon patting you on the head for a job well done. My first task was eating no junk food after dinner. Apple slices and string cheese are okay, but no cookies, candy, or ice cream. That coupled with no alcohol has eliminated blood sugar spikes overnight. Fortunately I haven’t struggled much with reducing food or alcohol this month and that has been a surprise.

I probably sound like a goody two-shoes saying this is easy and that is easy. What Dry January and restricting junk food after dinner emphasize is that I am good at none and terrible at one. The potato chip commercial that says “Bet you can’t eat just one” is directed at me. I don’t stop at one cookie. I don’t stop at one piece of candy. I don’t stop at one glass of wine. But I can do none.

Why do Dry January? Why not just take a vacation from drinking? I do well with structured goals and get support from nitty-gritty scorekeeping. I go to the calendar in the Try Dry app every evening and after my report of no drinking, I get a bright confetti-laced congratulation. The Streaks app displays how many days I’ve succeeded with my goals. Silly but motivating rewards. Dry January gives me accountability. I said I would do it; therefore I will. For myself and for everyone else participating in the program. 

Another positive with Dry January is that there is a predefined goal and an endpoint. The success of Dry January 2023 will not be determined by what I do on February 1. The challenge is to avoid alcohol from January 1-31 and I am confident that I can do that. But I am already concerned about February 1. Can I move from the structure of Dry January to continue not drinking in February? If I choose to return to wine, can I moderate my quantities? Things that were easy for 31 days will probably become difficult if they turn into forever tasks.

At the beginning of the month I did not have the goal of avoiding alcohol for longer than a month. Two weeks later I like not drinking. I feel good. I am sleeping better. My blood sugars are slightly better. I think I am losing weight. I have one less thing to feel guilty about.

On February 1, maybe I can keep this up for a while longer. I don’t know if I will want to or if I can. But if I do, it will be by avoiding one and staying with none. Not exactly moderation but a good start.

TBD….

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Resources:

Dry January Info:   https://alcoholchange.org.uk/help-and-support/managing-your-drinking/dry-january

NIH Drinking Levels Defined:  https://www.niaaa.nih.gov/alcohol-health/overview-alcohol-consumption/moderate-binge-drinking

National Institute of Alcohol Abuse and Alcoholism:   https://www.niaaa.nih.gov/

Alcohol’s Effect on Health:  https://www.niaaa.nih.gov/alcohols-effects-health/alcohols-effects-body

The Huberman Lab podcast What Alcohol Does to Your Body, Brain & Health:   https://hubermanlab.com/what-alcohol-does-to-your-body-brain-health/

CDC Alcohol Fact Sheets:   https://www.cdc.gov/alcohol/fact-sheets/alcohol-use.htm

Outside the Box: Silencing Tandem Dexcom Alarms

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If you’re like me, sometimes you want to silence all Dexcom alarms.

Maybe you’re at church, a wedding, or a funeral. Possibly a job interview or an important meeting. Maybe you just want to sleep. Maybe it is the first 24 hours of a sensor with erratic readings and nosediving lows.

All Dexcom alerts except for the 55-Low alarm can be turned off on both your phone and Tandem pump. But you can’t turn off the 55-Low critical alarm or even pause it for a certain period of time. Some people think that is a great safety feature and have no problems with the limitation. Me, I struggle with it. Although Dexcom is a great tool and I appreciate that it regularly gives me notifications of highs and lows, I don’t believe that it saves my life every day. I am confident that if I can silence all Dexcom alarms at certain times, I am going to be okay. Sometimes my diabetes mental health requires that. I don’t want my medical device to siren at my niece’s wedding or during an important business meeting. (Actually I am retired and don’t have important business meetings. But you know what I mean.)

In August I wrote about my frustrations with Day 1 Dexcom sensors. Many or most of my sensors start at a number much lower than my actual meter-confirmed BG. While it is easy to turn off Control IQ on my Tandem pump until the sensor is reliable, the stress of repeating false 55-Low alarms on both my phone and pump is sometimes unbearable. I want to STFU those alarms! Not forever. Just for a couple of hours until the sensor stabilizes. Here is a reminder photo from that August blogpost.

When I am losing the battle with Dexcom false low alarms, I can turn off my phone for a while or overnight if I am not expecting important phone calls. But the pump is different. I can’t turn it off or bury it in my sock drawer because I need insulin delivery. I can’t pause or completely silence the sensor on the pump without stopping the sensor session. I am stuck.

It recently dawned on me that there is a way to silence the 55-Low alarm on my pump until the sensor is stable and reading accurately. I recently purchased a small Faraday bag which magically prevents Bluetooth and other electronic signals from communicating with whatever device I put in the bag. The Faraday pouch allows me to keep my pump running without turning off the active sensor session. But it stops the transmitter from sending false low numbers to the pump and prevents the incessant low-55 alarms. (FYI you must turn off the Out-of-Range alarm for the period that the pump is in the Faraday bag or you’ll get that alarm. Options/My CGM/CGM Alerts/Out of Range.) If I am concerned that I might have a real low, I use my meter. For something short like a funeral, a real low is an unlikely occurrence as long as my BG starts at a good number. For a sensor startup, I’ll probably use my meter several times whether or not my pump is in a Faraday bag.

If you don’t know about Faraday bags, you can do an internet search and learn about how they work. People use this technology to protect key fobs, credit cards, phones, and other electronic devices from remote hacking. Scientists have lots of exotic uses for Faraday cages that block all electromagnetic interference. Me, I just want it to temporarily isolate my pump from inaccurate sensor readings. 

If you’re someone who doesn’t struggle with Dexcom inaccurate numbers and isn’t bothered by alarms, a Faraday pouch is probably not for you. But if you are like me and sometimes just want to be protected from alarms that are inaccurate and/or intrusive, you might want to give a Faraday bag a try. There are lots of choices online and I purchased this one for about $20 through Amazon. I wasn’t convinced that the Extra-Small size would work (although I think it would), so I bought Small. It is big enough for my phone and definitely roomy for the pump.

When you remove your pump from the Faraday bag, initially it will show the Out of Range symbol. It takes 5 minutes or less for the pump to reconnect to the Dexcom transmitter. 

Some people will appreciate the ideas in this blogpost. Others, especially parents of young children and people not diagnosed in the dark ages, will be askance at the idea of blocking Dexcom signals.

But me, sometimes I need my diabetes tech to leave me alone. I am not a total rebel and mostly I do a good job of managing my blood sugar and staying safe. But sometimes I am just an imperfect human trying to deal with imperfect D-tech and I need a way to protect my mental health. The Faraday bag is a new tool in my arsenal. 

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Note: The Faraday bag is not a solution for the siren of Tandem occlusion alarms. Fortunately with my recent pumps, I am rarely getting those alarms anymore. But I have memories of shrieking (false) alarms in yoga class and at the movies. So far none at a wedding or funeral….

Book Review: Still The World’s Worst Diabetes Mom

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I am a senior on Medicare and in a few weeks will have lived with Type 1 Diabetes for 46 years.

Stacey Simms is the mother of a son Bennie who has had Type 1 diabetes since the age of 23 months and is now a senior in high school. 

Stacey writes about parenting a child with diabetes and I write about living with diabetes. She is active on Facebook. I am active on Facebook. She is nice and supportive of other people affected by diabetes. I try to be nice and supportive of others. She is a podcaster and has written her second book. I…um…well…haven’t written any books although I was once a guest on the long-ago #DSMA podcast with Cherise, Scott, and George….

I was given the opportunity to read and review Stacey’s second book, Still The World’s Worst Diabetes Mom. In general I turn down most opportunities of free stuff because although I usually write favorable reviews, I rarely (or never) continue to use the reviewed product. It seems a bit fraudulent to advertise things to my readers that I don’t use. But books are different. It is a rare book about diabetes that I don’t learn from or at least get inspiration from. Plus I want to support the authors of  the Diabetes Online Community (DOC).

I purchased Stacey’s first book published in 2019, The World’s Worst Diabetes Mom. I enjoyed it and found her openness about mistakes refreshing and amusing. Most of her story wasn’t my story. I was diagnosed with Type 1 as a young adult and never lived as a child with diabetes, much less a toddler with diabetes. I never had a parent caring for my diabetes. Every day I give thanks that I am not the parent of a child or grandchild with diabetes. There was no Internet or social media for my first 20 years living with diabetes. I had no pressure to be perfect and I didn’t share my journey with anyone. I made lots of mistakes and still make lots of mistakes. For some reason, I find Stacey’s mistakes funnier than mine.

Stacey lives in the online diabetes parenting world where there are illusions of perfection and pressures to live up to that standard. Years ago someone on Facebook accused her of being an awful parent and things got a bit ugly. Rather than continuing the argument, Stacey embraced the criticism and came to terms with being the world’s worst diabetes mom.

Stacey is not a negligent or uninvolved parent. In fact she is the opposite. But she has firmly established her diabetes and parenting philosophy as “not perfect, but safe and happy.” This mantra has matured from her first book to her second as her son has grown up and she has grown as a diabetes parent. The second book chronicles a lot of her son’s journey from Mom and Dad being in charge to him being the pilot of his D-world. More of the D-mistakes and D-victories in this second book belong to Bennie and fewer to his parents. In my opinion that is exactly what a D-parent should hope for their child. But for sure it is not easy for a parent to step back and let the child manage the disease. Especially a disease where mistakes are par for the course and there are 42 factors that affect blood sugar results. 

My favorite part of Still The World’s Worst Diabetes Mom are the pages with words of wisdom that precede every chapter. The chapter titles in the book are standard topics for books about Type 1 diabetes. Things like School Days, Choosing an Insulin Pump, The Numbers Game, etc. But the introductory sentences are heartfelt and it is those blurbs that link Stacey’s journey as a parent to mine as a person with diabetes. 

 For example, although Chapter 5 is titled “Reframe Your Diabetes Parent Brain,” the introductory words shown below are incredibly relevant to my senior life with diabetes.

I simultaneously struggle with and accept my inability to be perfect with diabetes and have frequently wondered “How Good” do I have to be. I suppose this dilemma is even harder for parents who of course want the best for their child. What parent doesn’t want their child to have a perfect life with perfect blood glucose numbers! It is not my job to give parents advice except to remind them that with today’s insulin and technology, their child’s worst days are usually better than the best days of we seniors 40, 50, and 60+ years ago. And lots of us are doing fine. Their child can probably do well and be healthy even if things aren’t perfect. But complications do happen and unfortunately parents don’t have a Magic 8 Ball to predict the future. I applaud Stacey’s “not perfect, but safe and happy” philosophy. But that doesn’t mean I live in that spot on the diabetes perfection continuum. My endocrinologist says that I am doing great and my numbers are in range. But I find it too easy to remember the failures and not the safe and happy.

In summary, most of us in the diabetes community will read and enjoy Stacey’s book and come away being kinder to ourselves and to each other. For sure a sense of humor helps keep diabetes in perspective. Until then I recommend that you keep up the good fight for yourself and your children. Aim high but remember that “not perfect, but safe and happy” is a good place to be.

Still The World’s Worst Diabetes Mom will be available at Amazon and other book outlets on November 1. if you’d like to preorder the book, go to the Diabetes Connections Book Store. Use the promo code “spooky” for $3 off in October. 

Control IQ: Like Gerald I Have Tried!

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I probably write about Control IQ more often than I should. Some people with Tandem pumps love it and others hate it. I never love it but I often appreciate the benefits of a computer algorithm helping me out with my diabetes. Unfortunately I sometimes think that Control IQ  sabotages my D-efforts more than it helps me. In general I am frustrated with the Tandem algorithm because I want different ranges and averages than the software targets. Instead of making my diabetes easier, Control IQ often just gives me another indecipherable variable in figuring out the beast that is my diabetes.

After many marathon negotiations with the Control IQ gods, I have reached a compromise where I turn Control IQ off during the day and rely on it overnight. Fortunately Tandem makes it easy to turn Control IQ on and off. The only glitch is that if you use Sleep Mode, you have to turn it back on when you resume Control IQ. Sleep will not restart automatically even if you have a schedule. 

I use Control IQ during the night because it is extremely effective in preventing lows. I am willing to be responsible for monitoring lows in the daytime but have accepted that somewhat higher numbers during the night keep me safer although I chafe at some of those numbers. Remember that my endo says I am old enough that I don’t need to worry about complications 20 years from now….

I have used Control IQ for over a year and a half. I have accepted an average BG between 112 and 120. What I can’t deal with is Control IQ suspending my insulin when my BG is flatlined at 100. I am amazed watching my BG tracings throughout the day without Control IQ. I can flatline for hours at a time with minor up-and-down waves. But add Control IQ to the mix and I have insulin suspensions as my BG drops below 110. The pump screams that I will drop below 70 but without Control IQ it usually stabilizes in the 80’s or 90’s. Then future highs from those suspensions are another unknown as I navigate my next meal or my next couple hours of D-existence. Ups and downs and more ups and downs. 

Many Control IQ gurus would claim that I just have bad pump settings.

Maybe. Probably. But maybe not.

I have tried. I have tried and tried. And tried….to get agile and effective settings that worked yesterday, will work today, and will be great tomorrow. I have not succeeded. 

I have fiddled with my settings more times than I can count. I always come back to the idea that my diabetes philosophy is just at odds with an algorithm that is good at improving the numbers of the “average” population of people with Type 1 but not able to keep up with all of the variables of my diabetes. As a senior my skin and tissue are not as durable as they were in my younger days. Although I change my infusion sets every two days, I can still have a big difference in day-to-day absorption of insulin. I dutifully take the daily aspirin mandated by my internist and sometimes get bruising and bleeding that interfere with insulin. I am better at changing my pump cartridges more often than I used to but still have discernible (but not predictable) differences in insulin action from Day 1 to 4. Heaven only knows how to quantify the variance in what I eat and drink from day to day and how my body reacts.

This stuff is complicated.

I am lucky to have 7 (!) grandchildren and some of my favorite books are the Elephant and Piggie books by Mo Willems. Gerald’s frustration (“Elephants Cannot Dance!“) at not being able to dance is a good reflection of my journey with Control IQ. He is an elephant and elephants just cannot dance. I have type 1 diabetes and I just cannot be as perfect as I would like with Control IQ. 

Although Gerald thinks that he has failed when it comes to dancing, the squirrels and Piggie end up begging him to teach them “The Elephant.” Maybe my journey doesn’t have a bad ending as Gerald ends his dancing book exclaiming “Keep trying! You are getting it!”

Some days I am grumpy about my diabetes software and hardware. But I really have no choice except to….

Keep trying!

And that is what I do.

And This is Why We Struggle

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I recently filled out a long diabetes survey where I had to rank the potential benefits of a hybrid artificial pancreas system. One of the choices was a good night’s sleep. I think I rated that as Benefit #2 and I can’t remember what was #1. Probably accuracy of the CGM sensor.

Last night I had proof that a good night’s sleep is hugely important to me and proof that it is occasionally an elusive unicorn.

From the CGM history on my Tandem pump.

7/30/21     12:45am     Out of Range Alert

7/30/21     1:20am       Out of Range Alert

7/30/21     1:20am       Fixed Low Alert

7/30/21     1:20am       Fixed Low Alert

7/30/21     1:45am       Fixed Low Alert

7/30/21     3:40am      Fixed Low Alert

7/30/21     4:35am     Fixed Low Alert

7/30/21     4:40am     Fixed Low Alert

7/30/21      4:45am     Fixed Low Alert

I am not sure how many of those vibrating alerts I slept through and for sure the Out of Range alarms were the result of me sleeping on top of my pump. But I was woken up 7-8 times during the night. My husband probably 3-4 times. At some point I turned off my phone to stop the “Nerd Alert” 55-low alarms.

Last evening we flew from Baltimore, MD to Minneapolis. Several hours waiting at the airport followed by an unpleasant boarding experience and an uncomfortably hot flight. But as always with flying, if you have an equal number of take-offs and landings, it is a good day. But it was still a cr*ppy flying experience with Delta which is normally good for us.

In general Control IQ protects me from most lows and it is rare that I have an overnight like last night. I had several carb-loaded snacks on the plane (there was nothing else to eat) but all of those boluses should have disappeared several hours before I went to bed. At 7:30pm mid-flight I took my 5u nightly Lantus bolus with an insulin pen. (I use the untethered regimen with Control IQ to give my body some insulin that the Tandem pump can’t suspend. It works well. Usually….)  I remember in previous years reading articles indicating that insulin pumps might not deliver insulin correctly while taking off and landing on airplanes. Air pressure issues. Does that affect insulin pens? And my bolus was mid-flight, but probably at 35,000 feet. I have never worried or taken precautions about my pump. Should I have not trusted my pen-bolus?

Our flight landed at 8:30pm and we were home within 30 minutes. A little TV and straight to bed. Here is a photo of my 12-hour pump screen from 10:00pm last night until 10:00am today. The red areas show where my insulin was suspended. As you can see, there were several hours overnight where I was in the 50’s despite hours of getting very little insulin from the pump and eating at least 4 glucose tabs. I actually tested with my meter once to confirm that the CGM was correct and it was. I never soared high after all of these suspensions and that is unusual. So the Lantus must have been super-charged. I don’t think that any of the early-evening Novolog pump boluses could have still been active. I am never someone  who thinks that my body occasionally produces insulin. It doesn’t. So something was definitely awry last night.

The two hours from 8:00am to 10:00am reflect a typical breakfast bolus for 20 carbs (oatmeal, almond milk, and chia seeds) followed by a 3-mile walk. That insulin suspension is expected and common. It is the previous 10 hours that is crazy.

I had a bad night’s sleep and awoke today tired and achy. But when I got up, I was mostly fine and I had a good day with no fatigue. But gosh darn-it! It is horrible to be awakened over and over again by my diabetes devices. Or is it my diabetes devices communicating the craziness of my diabetes? Either way, I hope that future generations of D-tech, improved artificial pancreas algorithms, and faster insulin products can eliminate nights like last night.

I am thinking that I should move “a good night’s sleep” to the #1 position in my diabetes surveys.

David Bernstein: Zen and the Art of Insulin Maintenance

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Laddie: Today’s blogpost was submitted by my Arizona D-friend David Bernstein. David was diagnosed with diabetes nine years ago. After four years of frustration and ineffective treatments, David learned that original Type 2 diagnosis was a mistake and he was correctly diagnosed as Type 1. In recent years David’s pump and CGM have provided him with better tools to manage his diabetes but like many of us more experienced Type 1’s, he has discovered that the math of diabetes is only a starting point for managing blood sugar.

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David: As a Type 1 diabetic, I’ve ridden the sometimes wild and seemingly unpredictable highs and lows of the glucose roller-coaster.

Those of us who depend on insulin do our utmost to match insulin to sugars.  This match-up, after all, is the essence of diabetes management.  Yet the process can be so frustrating!  How many times are we surprised by the results of our efforts?  How many times do we feel like fools?  How many times do we scold ourselves for missing the mark?

We have been taught to administer our insulin according to empirical information.  For example, if your food to insulin ratio is 10 to 1, and you’re about to ingest 40 carbs of food, you need four units of insulin to handle the load.  Similarly, if your “adjustment” ratio is 30 to 1, you need one unit of insulin for every thirty points to bring you down to your glucose goal.

Math is handy, for sure, in diabetes management. We need the guidelines to get a sense of how much to dose.  From the various mathematical paradigms we’ve learned, we do lots of calculating and then come up with a number that determines how much insulin we take.

The system usually works, and most often gets us close to our goals.  But how many times are we surprised to find that a given dose is just not getting the job done?  How many times have we had sugars that go sky-high or nose-dive after lots of careful calculations?

Most of us have come to learn, and accept, that not every effort at managing our diabetes will be successful.  There will be times when our sugars seem so out of sync that we simply cannot fathom why!   It’s truly daunting to learn that dosing the same insulin for the same meal may not create the same results from one day to the next.

It’s common knowledge that various factors beyond insulin and glucose affect our glucose levels.  These include exercise, stress, sleep, pain, and more.  If we have a headache or some other physical discomfort, our sugars can be unpredictable.  If we are extremely worried and anxious, our sugars can vary widely.

Given the difficulty to maintain perfect control over sugars, many of us end up annoyed and confused.  Why did my glucose readings soar to 350?  How come I was steady all day and tonight my sugars dipped into dangerous hypoglycemic territory?

Should we blame the fates?  Is this thing called “management” of diabetes a fantasy?  Will we ever understand the inconsistencies in glucose levels?  Will we ever figure out the “perfect” dose for a given meal?  Tough questions indeed.

I would offer a way to deal with the seemingly crazy process.  I call it “zen” management.  Back in the 60s, a very popular book was published called Zen and the Art of Motorcycle Maintenance.  Subtitled an “inquiry into values,” the book explored our feelings about life and human interaction.

Among the many sayings in the book that became popular, one stood out in my mind: “First get the feeling, then figure out why.”  Isn’t that one way to approach our diabetes?  Should we strive to be more intuitive and less number-based about our insulin control?

“Zen” management of diabetes places more emphasis on our feelings at a given moment in time.  When it is time to dose, what factors other than numbers of carbs and insulin units should we consider?  Are we tired?  Sick?  Happy?  Sad?  Hassled?  Serene?

Since it is common knowledge that many factors affect insulin and glucose, it is important to look beyond plain and simple math.  We need to look inward.  We need to get a second sense about our dosing before we dose.

Before I take insulin, I sometimes do the math and then sit back with a cup of coffee (less milk, of course, in order not to begin the carb load!), and think.

Okay, yesterday the meal I’m about to have was perfectly covered with four units of insulin.  But today, things are different.  My readings have been on the high side since I got up.  I had a lousy night’s sleep.  I feel like I’m getting a cold.  I “feel” like five units will do a better job this time.

Such “zen” thinking flies in the face of the experts who would have us dose units with precision according to the quantity and quality of carbs we take.  But science alone does not always provide the complete picture.

If you’re tired of missing on the high or low side after dosing, try a broader thinking approach. Take into consideration emotional factors in your life.  Consider not only “thinking like a pancreas”, but also thinking like an individual.

Hopefully you will have more success reaching your goals.

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This article was originally published in 2018 as a commentary in the Diabetes Management Open Access Journal.

Bio:  David has a Ph.D. degree in French literature and a history of teaching French at university and secondary levels. After a career in education, he went into business with his son. They created an educational video company that sold to schools throughout the U.S. After retirement, he took up bluegrass banjo, wood bowl turning, and fused glass artwork. He is a passionate reader, writer, and TV watcher. He has been diabetic for nine years. He strives to learn more about type 1 so he can share his learning with fellow diabetics.

How Good?

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How good do we have to be?

Or maybe I should ask how good do I have to be? Because what is good enough to keep me healthy might not be good enough for you. Diabetes complications can be a capricious foe giving retinopathy or gastroparesis to people who have relatively good numbers and leaving others living with erratic sky-high numbers unscathed. But we mostly know that the better we do, the better off we’ll be. 

Me, I’ve made it through 44+ years of diabetes with no major complications. At age 69 my eyes, kidneys, nerves, and cardiovascular system are seemingly okay. Same for my sister at age 72 with 40 years of Type 1. Something crummy in our genetics made us susceptible to Type 1. At the same time something good in our genes is protecting us from diabetes complications. In 2005 the Joslin Diabetes Center launched the 50-year Medalist study to investigate why a select group of people had managed to thrive despite longterm Type 1 diabetes. I am not sure that they have found definitive answers but I think that I share in the good fortune of those longtime survivors. My endocrinologist insists that hard work and newer insulins/technology are what have protected me but I strongly believe that luck and “unknown protective factors” are also in the mix.

Diabetes social media is inundated with people who use CGMs, pumps, newer insulins, smart computer algorithms, strict diets, incredible motivation, and lots of diabetes know-how to push the boundaries of what blood glucose numbers are achievable for those of us with Type 1 diabetes. Some people argue that we are entitled to and should target “normal” blood glucose numbers. But what is normal? The lab normals for my A1c tests indicate that results between 4.0 and 6.0 are normal. The CDC indicates that an A1c of 5.7 and below is normal. But an A1c of 5.7 equates to an average blood sugar of 126 and a 6.0 A1c is a 136 average. Those aren’t “normal“ although they are good for people with existing diabetes. Dr. Bernstein insists that normal is a blood glucose of 83 and our bodies are being damaged by anything higher. That 83 translates to an A1c of 4.5. So depending on whom you listen to, normal can be anywhere from 4.5 to 6.0.

As a contrast to Bernstein’s beliefs there are studies and other diabetes doctors claiming that an A1c of 6.5 is good enough and that anything lower has diminishing returns. Stacy Simms of the Diabetes Connections Podcast has a 2019 interview with Dr. Bill Polanski of the Behavioral Diabetes Institute and Dr. Steve Edelman of TCOYD called “Evidence-Based Hope and Type 1 Diabetes: New Info, New Optimism.” These doctors cite research studies and argue that “decent care” might be good enough and that might include A1c’s as high as 7.0 or 7.5. 

Interlude: I am hesitant to mention Dr. Edelman since his recent three donuts video is causing conflict in the diabetes online community (DOC). But lots of things cause conflict in the DOC and I believe that it is medicinal to laugh at many of the absurd things we do to live with diabetes. I like donuts, especially the old fashioned ones with chocolate icing, and am not too proud to admit that I have eaten three at one sitting. And yes, the BG repercussions were horrible. I don’t look at Dr. E’s video as a how-to or permission to gorge on donuts. But I do like his attitude that I shouldn’t be mired in guilt at occasional dietary indiscretions.

So what blood glucose numbers and target ranges should those of us with Type 1 diabetes strive for?

Is there an optimal balance between diabetes mental health and diabetes physical health?

Is diabetes social media filled with numbers games that don’t necessarily translate to better overall health?

Are we playing the numbers game rather than focusing on a good life?

I should insert here that many people with diabetes are struggling to achieve any semblance of “good results” and please know that I respect your struggles. Diabetes is a tough adversary. Diabetes is especially tough when you struggle to afford insulin and technology. Diabetes is tough when you’re doing your best and it is never good enough.

This blogpost is targeting the superstars. The people on social media complaining about an A1c of 5.2 and wanting to be in the 4’s. The people who successfully achieve one target range and then immediately set a lower target range. The people who are critical of parents who allow their child a cupcake. The people who insist on low normal blood sugars when our doctors allow higher. The people whom I am jealous of. The people whom I think are crazy. The people like me who are never satisfied with how I am doing.

Is there ever a number that is good enough?

For sure I don’t know. I just know that I can’t live a “perfect” diabetes life. I make lots of good decisions but never reach the nirvana of a flat blood glucose tracing. I make lots of bad decisions and no amount of pumped insulin, injected insulin, and/or inhaled Afrezza can control the blood glucose spikes. And sometimes I make good decisions and still get a crazy high spike in the middle of the night. Hormones. Pump sites. Who knows? There is no end to the things that can go wrong.

And how will I ever know if I am living a D-life that is “good enough”?

One answer is that according to my standards, my numbers recently haven’t been “good.” Control IQ with my Tandem pump keeps me somewhat higher than my previous targets. At the same time I feel good. I hike 5 miles. I walk for 18 holes of golf. Although I’ve gained weight in recent years, my clothes still fit. So I am probably doing “good enough.”

Another answer is that although my numbers with Control IQ have been higher recently, my endo loves them. I really appreciate virtually having no lows and when I do have lows, I feel them more than I have in the last ten or twenty years. The fact of the matter is that I feel the same with an average of 125 as I feel with an average of 100. And if my average were 150, my guess is that I would still feel good. Is my body being damaged with higher numbers? My endo would say no and she would emphasize that at my age that it is hugely important not to have severe lows, falls from lows, and disorientation from lows. She very frankly says that I probably won’t live long enough to get complications from my current blood glucose numbers.

But I struggle to accept my current numbers. They “fail” compared to the stellar goals and numbers of some of my online diabetes friends. But they are probably great compared to most people with Type 1 diabetes. I often think my mental health is more at risk than my physical health when I look at my day-to-day life with diabetes. 

I play golf and am pretty good at the game. To me diabetes and golf are about the same on the frustration scale. No matter how good a golfer you are, you wish you were better. I think that a 6-handicapper is just as frustrated or more frustrated than a 30-handicapper. Same with diabetes. You start to get BG numbers that you never thought were possible. But you know you could do better. You remember those 3 chocolate chip cookies last week. You remember the unexplained highs last Tuesday and the crazy lows after changing your pump cartridge yesterday. All of a sudden your time in range is not good enough because there are people on Facebook getting 100% with a much-tighter range. 

Sometimes I wonder: Are we living diabetes instead of living life?

And BTW I can quit golf but I can’t quit diabetes.

Lots of questions. Not a lot of answers.

Control IQ Basal IQ: No, It’s Really Mental Health

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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….

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….

Going Untethered with Control IQ

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I activated Control IQ on my Tandem X2 pump in late January. After two weeks I wrote a blogpost sharing my goals for the system:

“Unlike some seniors who are askance at letting a tech device control their insulin, I am excited. I need help. I want to sleep better. I want fewer alarms. I want BG graphs with rolling hills and valleys and fewer Himalayan peaks. I want my diabetes to be  easier.”

A month later I wrote another post indicating that I mostly liked Control IQ because of the protection from low blood sugars. At the same time I shared that I was still struggling to dial in settings with my major problem being high blood sugars after long insulin suspensions.

“I think that one characteristic of “ideal” Control IQ settings is the avoidance of long suspensions of insulin. When I say “long”, I mean one hour or more.  Unfortunately I see such suspensions almost every day. Whenever I go 1-2 hours without insulin, I always go high because I just can’t be without insulin that long. The problem is that these suspensions don’t happen at the same time or in the same circumstances each day.”

Over the next 6 months I changed pump settings more times than I can count. Stronger basals, weaker basals. Stronger insulin sensitivity factors, weaker sensitivity factors. Stronger carb ratios, weaker carb ratios. I had easily accepted that eliminating most low blood sugars would raise my average blood sugar and I was somewhat okay with that. I never considered turning off Control IQ, but I was frustrated that the system was not close to hands-off for me. My biggest problem continued to be highs after insulin suspensions and random sticky highs. BTW I was using Sleep Mode 24/7 and continue to do so.

In August I started problem-solving again. I found that when I weakened my pump settings, I got fewer suspensions of insulins but lots of stubborn highs. When I used settings that allowed me to achieve my target blood sugar levels, I had long insulin suspensions. I determined that although I really appreciate reductions in basal insulin by Control IQ, I cannot ever be 100% without insulin regardless of my blood sugar level.

I don’t need a lot of insulin but I always need some. 

I have a long history of periodically using the untethered regimen (pump + part of basal injected) successfully. It made sense to me that having some insulin on board that Control IQ couldn’t adjust might help me achieve my goals. After a few days of experimenting with how much basal to inject, I settled on 30%. I began taking 4 units of Basaglar (Lantus equivalent) every evening and reduced my pump basal settings across the board by that amount. Assuming that the Basaglar absorbs evenly over 24 hours (it probably doesn’t), it provides me with 0.17 units of insulin per hour. Minuscule.

After 5 weeks I am amazed at how successful the untethered regimen has been. That little bit of constant insulin has really helped to reduce post-insulin suspension highs and other random BG excursions. Control IQ has power over enough of my basal insulin that it continues to protect me from most lows while helping me attack the highs. Both my average BG and standard deviation are lower. Time in range is higher. The differences in statistics aren’t huge but they are significant.

The additional work of injecting basal is minor and a phone alarm reminds me to take the evening injection. I keep the Basaglar pen in the refrigerator and use a syringe to withdraw insulin because I am more confident about the dose that way. I am not discarding pens after 30 days but will use them until they are empty or there is a noticeable decline in insulin potency. At 4 units per day,  the added expense of a second insulin type is negligible.

I am sure that many of you will argue that I just need to get better pump settings. My experience is that the times of day and the cumulative time of suspended insulin vary greatly from day to day. Am I more active? Is it a new pump cartridge with fresh insulin? Is the infusion site less than optimal? What am I eating? And so on. IMO all of this indicates that “perfect” pump settings are a mirage although I continue to reduce some of my pump basal rates and tweak settings. Right now I am finding the addition of a small amount of injected basal insulin is helping Control IQ do its job better and allowing me to micromanage less. So it is a win in my book.

Is diabetes easy-peasy now? No, but it is easier. Are my numbers perfect? Not really, but they are more manageable. Will I stay with the untethered regimen forever? Probably not.

I am not saying that you should do what I do. We all have different targets and different diabetes. At the same time I encourage you to be creative as you try to optimize your Control IQ experience. Although we can customize many Control IQ settings, we are limited by the fixed behavior of other settings and the slow speed of insulin onset. Sometimes we just need to think outside the box to figure out ways to get the results that we want.

Just another reminder that our diabetes is a constant science experiment….

Jigsaws and James Bond

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I would love to say that I am doing fantastic things at home during the coronavirus crisis.

But I am not.

I haven’t cleaned closets. I haven’t planted a vegetable garden or dug out the dead shrubs in the backyard. I periodically delete emails but still have 25,000+ and have been accused of being an “email hoarder.” I have finished a couple of digital books through my library’s Libby app, but have abandoned many more halfway through. I am doing better with romance blood and gore audiobooks which inspire me to walk and listen. Five to six miles a day.

Mostly my attention span is worthless. I am watching very little TV and would argue that most of it is not worth watching. One of my hiking friends recommended Belgravia on Epix and I have never made it past the second episode. I have watched the first episode 3 times hoping to get engaged. But no. 

What am I doing?

1500 piece jigsaw puzzles on the kitchen table. My husband is more addicted than I am but we both spend time every day constructing wild animals.

And then cows, cows, and more cows.

And then there are James Bond movies. Fortunately we have a cable TV package that gets us access to almost every channel in the universe. We are currently watching films from the ‘60’s and they are quite horrible. Except that they are James Bond.

JAMES BOND….

 

Looking at Diabetes:  After abandoning Tandem Control IQ for several weeks, I have changed my pump settings again. Again…like the tenth time. I am doing better with Control IQ but know that I won’t be happy with it until I can target BG 95-105 instead of 110-120. Overnight I spend a lot of time at 140-150 and don’t think that Control IQ is working hard enough. But if I make the pump settings more aggressive, my basal suspends for hours and I do worse. I have a telehealth endocrinologist appointment in two weeks and wonder if she’ll be able to see patterns and suggest improvements in my pump settings. Overall I know that my doctor will be happier with my higher BG averages and I know that I appreciate having fewer lows. 

Sleep or lack thereof:  I lose interest in books and TV by 9:00pm. I try to stay awake until 10:00 but don’t always succeed. I often wake up at 2:00am and toss and turn for a couple of hours. My dreams are crazy and vivid. I know that it is dysfunctional senior/diabetes sleep. At the same time I am never tired during the day and know that I am getting sufficient sleep. But exploring Minneapolis with Anthony Fauci night after night is a weird experience….

I am slowly but surely getting organized for diabetes if I unfortunately get Covid-19. I have started a medical resume as outlined by Joanne Milo, The Savvy Diabetic. I have filled a plastic bin with pump and CGM supplies. But I am not really organized and prepared enough. I need to focus more because my organization could be the difference between life and death.

I am mostly comfortable in how I am living these days. My close-by grocery store has senior hours and I feel safe in my mask and paying with Apple Pay. I spend time with the local grandchildren outdoors and 6-feet away. No hugs but I use my chalk and my 3-year old granddaughter uses her chalk and we draw flowers, squares, and stars on the driveway. I play Yahtzee with the older girls and they manage to beat me every time with lots of Bonus Yahtzees. My 12-year old grandson tries to convince me every day that he needs a new phone for his birthday. The other grandchildren live far away and we touch base weekly through FaceTime.

My days are not what I would have yearned for as I have moved into old age. But I am fine. I am a younger-oldster and not totally doomed. I do my best to celebrate the good things in my life and refuse to live in gloom and doom.

I pray that we will all stay safe.