Book Review: Still The World’s Worst Diabetes Mom

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. 

Remnants of the Pandemic

The title of this blogpost might indicate that I think Covid has gone away and is no longer a risk.

I don’t.

But I am fully vaccinated with two boosters and will have a third booster this week. I have chosen to believe that vaccinations will protect me from severe illness. Amazingly neither my husband nor I have contracted Covid in the last 2-1/2 years although we have had numerous close and not-so-close exposures. We don’t feel virtuous; just lucky. Some of our friends have had the virus and fortunately none with serious illness. My children and their families have taken Covid seriously with masks and vaccines. Even still, three of the four parents have had the virus in the last 6 months as have six of the seven grandchildren.

My daughter-in-law from the East Coast contracted Covid while staying at our house in August for a family wedding. My son (her husband) and the three children returned home on schedule so as not to get Covid one-by-one at my house and spend the rest of the summer with us. My poor DIL posted on Facebook that she had long dreamed of a solo getaway from the family. She just didn’t expect it to be in her in-law’s basement….

My current Covid behavior could be classified as inconsistently cautious. I wear a mask to Costco. I go to senior fitness classes at the YMCA unmasked. If the grocery store is crowded, I wear a mask. If it’s not, I don’t. I wore a mask on the crowded bus to the Minnesota State Fair but didn’t on the uncrowded bus on the way home. I wear a mask on airplanes. I don’t wear one for outdoor activities. I have never once had anyone criticize me for masking although I rarely see others masked. I’m not sure if I am wasting my time by wearing a mask sporadically or if I am putting myself at risk by not wearing one all of the time. 

Like everyone else, I just don’t know.

I am aware of how much the last two and a half years of pandemic life have changed me. Some of the changes are positive. Some of the changes are probably negative or at best iffy. Some changes are nothing more than doing things differently. For sure “Covid Caution” has given me a great excuse to avoid things I don’t want to do. 

Here are some good things.

I started Duolingo Spanish in 2020 and am now at Day 752 of daily Spanish lessons. I have learned a lot but am miles away from being a fluent Spanish speaker. I am currently on Unit 50 with Unit 211 as the end goal. I can read many things in Spanish and understand random words from Spanish speakers. I occasionally stumble through a sentence or two with my grandchildren’s nanny from South America. 

On an early walk during the pandemic I saw a pileated woodpecker and was inspired to learn more about birds. I am pretty good at common birds but not so good at LBB’s. (Little Brown Birds.) I enjoy the Merlin Bird ID App which gives size, color, and habitat clues to identification and identifies birds with recordings of their calls. 

Although I have always been a reader, I have definitely read more since the beginning of the pandemic. I am not reading important literature or much nonfiction. My reading can mostly be categorized as “high quality trash.” Interestingly I watch much less TV. 

I have let my hair grow out and proudly wear a ponytail. Much less work than shorter hair, especially hair that curls in weird places and frizzes in humidity.

Diabetes-wise my biggest bonanza from the pandemic has been Medicare coverage for telehealth visits. Hopefully this change will be permanent. I spend 5+ months in Arizona and telehealth allows me to easily satisfy Medicare’s requirement for endocrinology visits every 90 days. Other than that I don’t think my diabetes has changed much. 

Here are some iffy things.

I have gained weight. Some of this weight gain started before the pandemic with my slowing senior metabolism. My endo is thrilled and reminds me that frailty is a huge risk as I age and a little ”pudge” can be helpful if I get sick. I had a bone density scan in May and my scores improved significantly. More weight: stronger bones. I am okay with some of the weight gain but hate that a lot of my clothes are too tight. Plus I don’t like what I see in my bathroom mirror. (Maybe I never did.)

I have always been aware of personal space and am increasingly uncomfortable with people getting too close. When my local YMCA resumed in-person fitness classes after a year of the pandemic, the workout rooms had big colorful dots on the floor to show proper spacing. Unfortunately they removed the dots last fall. Now when I am at yoga and someone lays their mat too close to me, I want to yell “Go back to your dot!” But there are no dots….

As a senior with multiple autoimmune conditions, I think that Covid Caution continues to be a good way for me to live. But I know that I use it as a copout. I didn’t want to go to a large indoor wedding reception this summer because I wouldn’t know anyone. I just said “Covid Caution” and was excused without hurt feelings. I don’t love traveling a lot and am a happy homebody. Covid caution and I can stay home or at least avoid trips outside the continental USA. I am not a party person and probably use Covid too often as an excuse to avoid large groups. At the same time I am aware that as I age, it is not good to be socially isolated. 

So where am I?

I don’t lose sleep over Covid. In early 2020 I was concerned that if I got the virus my overactive immune system might drive me into a cytokine storm. I live now trusting that my up-to-date vaccinations will prevent that. I have been lucky to have not lost close relatives or friends to Covid and don’t have traumatic memories from the last couple of years. I realize that not everyone is so fortunate,

Looking forward, as a senior I think that the biggest risk to my longevity is a fall. I dutifully hold onto stair railings and pay attention to my environment. I go to senior fitness classes where balance exercises are emphasized. A broken hip with a resulting surgery, hospitalization, and forced inactivity seems a bigger risk to me than Covid. My internist would say that as a person with longterm diabetes, heart disease is my biggest risk.

I don’t know my future and at some point it is just pick your poison. (Actually it probably won’t be my choice….) Until then I will do my best to stay active–both physically and mentally. I will work to avoid total social isolation but mostly with outside activities and gatherings. I will hope that vaccinations continue to help most of us avoid hospitalization and death from Covid. I will listen to experts and adjust my behavior accordingly.

For the time being I will continue to hope that what I am doing is good enough.

Diabetes Mental Health: Every Ten Days

Every ten days my diabetes mental health is in jeopardy.

If you use insulin and diabetes tech, you probably know what happens every ten days.

Yep. I have to start a new Dexcom sensor.

The vast majority of my sensors have a horrible Day 1. 

I have used CGMs for 14 years. Dexcom is aware that body chemistry affects sensor starts and that some of us struggle with Day 1. Unfortunately they don’t have a solution and have not promised improvement with G7. That being said, once I get to 18-24 hours of a sensor, my results are excellent and 95% of my sensors work well through Day 10. 

Starting with Medtronic in 2008 and continuing through Dexcom 7+, G4, G5, and G6, I have a history of bad sensor starts. I’ve used arms, legs, lower abdomen, upper belly, and upper chest. I have started sensors on time. I have pre-inserted sensors for 4, 6, 12, and 24 hours. Every time I think that I have found a solution (something like make sure my BG is above 130), that solution fails with the next sensor. I am constantly frustrated with the ubiquitous Facebook advice to hydrate more. How much water can someone drink?!?

A large number of my sensors start with LOW even when my blood glucose is above 100.

 Or maybe I am lucky and get a number. I take a BG test with my meter. 94

Of maybe the sensor starts at a number reasonably close to my meter and then quickly decides to nosedive.

I get sirens from my phone and my pump that I am low. But I am not.

Once in a while, a sensor magically starts at a good number and stays there. I don’t know why.

Then I get to the d*mned-if-I-do and d*mned-if-I-don’t issue of calibration. Many people on Facebook consider calibration to be a sin but both Tandem and Dexcom have advised me that it is okay to calibrate. The people who insist on no calibration are probably not sitting with a sensor in the 40’s that has constant Low-55 alarms from their phone and pump. If my sensor read 110 and my meter said 130, I would be okay letting that ride. But that is not my experience. I use several “rules” when I calibrate to prevent getting pushed into an endless calibration loop. I never calibrate more than 40 points at a time. I wait 15 minutes between calibrations. I try not to calibrate more than 50% of the difference between the sensor and the meter.

Sometimes a calibration or two fixes everything. Other times the sensor over-reacts to the calibration(s) and gets jumpy in a higher range or heads back down to the previous low. Sometimes the next day the sensor reads higher than the meter. But if that happens, it usually only takes one calibration to put the sensor back on track. Starting on Day 2 I am confident with almost all of my sensors and rarely use my meter through Day 10.

So why is this a mental health challenge. I understand what is happening and one would think I could just chill as I move through Day 1 of a sensor. 

Number 1:  I can turn off my phone for several hours to stop the 55-Low alarms. But I can’t turn off my pump and therefore can’t eliminate those alarms. Plus I want/need my phone for other activities. 

Number 2:  I can turn off Control IQ on my pump and manually handle my blood sugar. But when the sensor returns to a sensible number, I get suckered into turning back on Control IQ. I am stupidly optimistic about my diabetes tech and always expect it to work correctly. 

Number 3: I don’t know how to fix the problem. I probably spend too much time on social media where people who have no problems blame people like me for our problems. Just because you haven’t used a meter in 4 years doesn’t mean that my Dexcom is reliable on Day 1. Calibrate or don’t calibrate? How to calibrate? Presoak my sensors or not? If so, how long? There is only so much water I can drink, so quit telling me to hydrate. 

Where to from here?

At this stage I am committed to staying with Dexcom so I need to work this out. I don’t think Abbott’s Libre would be as accurate for me as Dexcom and doesn’t integrate with my pump. Senseonics’ Eversense would solve my Day 1 problems because the sensor is inserted surgically (Argh!) and lasts for 6 months. No warming up every 10 days. But Eversense doesn’t integrate with my pump and I’m not keen to face surgical implantation and extraction. After my disastrous experience with Medtronic’s Sofsensors (okay 14 years ago!), I won’t return to Medtronic without the ability to try out their current sensors and I am not enamored of their automated insulin system.

So I need to either figure out a plan to improve my Day 1 results with Dexcom or get better at coping with the Day 1 dysfunction.

My current plan is to dutifully put my sensor expiration date on my calendar and pre-insert my sensors 12-15 hours ahead of time. Interestingly my experience has been if I pre-insert 24 hours ahead, the sensor reads high on startup. And maybe that would be better than low and more easily calibrated? So I assume somewhere between no pre-insertion and 24 hours is the “magic brewing time.”

I’ll continue to start new sensors mid-morning to minimize false low alarms overnight. Frankly I don’t really have a plan to deal with the alarms from start-up LOWs and numbers in the 40’s. Maybe eat some uncovered snacks and let my BG levels rise higher than my normal targets. Something about that seems wrong….

Some of what I am dealing with is alarm fatigue, If I could turn off 55-Low alarms for a few hours on Day 1 of sensors, I could more easily deal with the inaccurate Dexcom numbers. Unfortunately the future control of unwanted alarms by the patient seems bleak. The latest Dexcom update on the Apple platform requires the acceptance of Critical Alerts and those alerts glaringly interrupt other functions on the phone for seemingly non-critical notifications. My understanding is that the release of Dexcom G7 has been delayed due to the FDA’s concern about patient notifications. Unfortunately IMO that probably means more mandatory alarms and less patient control.

I think lack of control is the biggest stressor on my diabetes mental health.

But enough ranting for now. 

And please don’t tell me to drink more water.

Medicare, Dexcom, and Test Strips 2022

It was a wonderful day when Dexcom G6 was approved without the requirement for daily calibrations. One less chore in my diabetes life and fewer alarms interrupting my day. But unfortunately for many of us seniors, the labeling of Dexcom as therapeutic and non-adjunctive** has made it more difficult to receive Medicare-reimbursed test strips or at least the test strips of our choice. 

** Per CMS Policy Article A52464:  “A therapeutic or non-adjunctive CGM can be used to make treatment decisions without the need for a stand-alone BGM to confirm testing results.”

Like everything with Medicare, people are having totally different experiences with the test strip problem. Some seniors on Advantage Plans are able to get test strips in addition to CGM with no problem. A few people on Facebook claim to get coverage for 3 strips a day (the Medicare allowance for insulin users) from their pharmacy because the doctor wrote the prescription saying that the strips were for calibrating their Dexcom. Others have had no success getting pharmacy coverage for strips regardless of what the prescription specifies. I have read many times our Medicare CGM suppliers are required to provide a meter and I recently got a meter and strips from Solara. But it was not the meter and strips of my choice.

I started this blogpost ten days ago writing that I could find no CMS document outlining the exact guidelines for test strip coverage. All of my info was from word-of-mouth on diabetes social media. Then a few days ago a Facebook friend posted a link to Glucose Monitor – Policy Article A52464C as updated on 4/7/22. Finally for better or worse a clear delineation of the policy.

Some of the History

When Dexcom began providing Dexcom G5 to Medicare recipients in 2017, we were shipped a blood glucose meter and test strips packaged with our monthly sensor allowance. What was amazing was that Dexcom picked a high quality meter system (Contour Next by Bayer) for Medicare recipients rather than the cheapest kid on the block. At that point Contour Next was rated as the most accurate meter by the Diabetes Technological Society (DTS).

Meanwhile some pharmacies quit providing test strips to seniors on CGM due to Medicare denying payment because we were getting test strips from Dexcom. Fast forward to Dexcom G6 when Dexcom quit being a Medicare distributor and moved us to Walgreens and online DME suppliers. All of a sudden many of us were no longer getting test strips. It wasn’t a big deal to me because I had lots of extra strips that I used well past their expiration dates. Only now have I run out of those strips and need to investigate my alternatives.

The Present–My Interpretation

Despite the different experiences of Medicare recipients in getting test strip coverage along with CGM coverage, Glucose Monitor – Policy Article A52464C clearly outlines the policy. (Please note that Advantage Plans are Medicare benefits administered by private companies and can have different rules than Medicare. Similarly people with TRICARE and retiree plans can have different benefits. I am writing about Basic Medicare with or without a Supplement Plan.)

As stated above, Dexcom is labeled as a therapeutic and non-adjunctive CGM. The test strip policy is: 

“For non-adjunctive CGMs, the supply allowance (K0553) also includes a home BGM and related supplies (test strips, lancets, lancing device, calibration solution, and batteries), if necessary. Supplies or accessories billed separately will be denied as unbundling.”

So yes, you can get test strips under Medicare as part of your CGM supplies. The crucial part of this policy is the mention of supplies billed separately being denied because of being “unbundled.”

Bundled versus unbundled. Bundled is when my CGM DME supplier provides me with a meter and strips as part of my Dexcom sensor order. Those test strips are covered by Medicare. Unbundled is when I try to get test strips from my pharmacy. Those test strips will be denied. Unfortunately to carry this further, bundled is when my CGM supplier sends me a cheap meter of its choice. Unbundled and denied by Medicare are strips for my highly rated Contour Next meter. 

I do not have the knowledge to address the policy for Medtronic CGM users. Those sensors are considered adjunctive and it looks to me that meters and strips are not part of their bundle. So I wonder if Medtronic users can still get test strips at the pharmacy??? “For adjunctive CGMs, the supply allowance (A4238) encompasses all items necessary for the use of the device and includes but is not limited to, CGM sensors and transmitters. Separate billing of CGM sensors and transmitters will be denied as unbundling.” I also do not have experience with Libre and Eversense systems.

My Choices and My Experience

I don’t use a lot of test strips compared to pre-CGM days. Most of my testing is on Day 1 of new sensors when I consistently have erratic results and lots of false lows. I would estimate that I use 7-10 strips per sensor and I’ll call that 25 strips per month.

One choice is to keep using Contour Next and pay out of pocket. That is not as horrible as it sounds because Walmart and Amazon sell Contour Next strips labeled Over-The-Counter for $26.58 for 70 strips ($0.38/strip). Walmart also sells an online bundle of 200 strips for $54.99 ($0.27/strip). If I use 25 strips/month and thus about 300/year, I can get by on $81-$114 annually. I can afford that but not all people can.

A second choice is to use the Omnis Health Embrace meter and strips provided by Solara, my DME supplier. The upside: this choice has no out-of-pocket cost. The downside: did I mention that it is a Talking Meter? Fortunately I have good eyesight and don’t need a talking meter. But if I turn off the talking which is quite obnoxious, I get loud beeps that are equally obnoxious. Two other negatives are that the meter must be turned on and off and the strips are difficult to insert. Plus this meter did not pass DTS’s benchmark tests.

A third choice is to buy a cheap ReliOn meter system from Walmart. In the original DTS study, there was a Walmart meter that was rated highly and passed the benchmark tests. Walmart ReliOn Confirm Micro. When I go to the Walmart website, I can find the ReliOn Confirm Micro BG test strips but I cannot find the meter. So it is obviously not in production. About two months ago I purchased a ReliOn Premier Compact meter that included 50 Premier test strips for $19.88. My first two concurrent tests were 100 and 130. For me the most important accuracy test for a BG meter is repeatability. Those two tests were too far apart for me to have confidence in the meter and strips. It is now my fountain pop tester.

A fourth choice is that I bought a CVS Advantage meter and strips that were highly rated in the DTS study. So far the results have seemed reasonable and the OOP costs for strips are less than for Contour Next. But not a lot less. 

I could go forever trying other meters and strips and I am not sure that there would be a definitive or right answer.

Interestingly yesterday morning, I did a bunch of BG tests, each with a new fingerpick of blood. The noisy Embrace meter tested 102-102 on tests two minutes apart. Repeatability: Surprisingly great. Then I used the CVS meter and got 107-118. Not exactly the same but meanwhile my Dexcom went 109-116. And then the Contour Next was 80-82. Repeatability great, but the numbers were totally out of the ballpark from the other meters and my sensor.

Today I did similar tests. Embrace meter 114-115. CVS 114-112. Contour Next 106-105. Dexcom sensor 134.

So what does this mean and what should I do?

I have no idea.

All I know is that according to a common saying:  “A man with a watch knows what time it is. A man with two watches is never sure.”

Along that line:  A woman with one meter knows her blood glucose. A woman with a CGM and three meters doesn’t have a clue.

*******

TBD what I decide to do about test strips. I have a few months worth of Contour Next and CVS strips. I will continue to use the ReliOn strips for testing Diet Coke. But I am flummoxed that the Contour Next readings were significantly lower on the first tests than my Dexcom and the other meters and moderately lower on the second tests. And the free Embrace meter is being surprisingly consistent. 

Yes, I’m Still Here

In recent years blogging has become passé in the Diabetes Online Community (DOC) and replaced by Facebook, Twitter, Instagram, and other platforms. I still miss the informative and heartfelt posts of my peers and would love to see a resurgence in real writing about life with diabetes. There is no doubt that over the past couple of years I have joined the decline. My most recent post was published 10 months ago! In general I feel as though over the last nine years I have said it all and no doubt I am now mired in laziness.

(There are a still a few active diabetes blogs in my Feedly Reader such as The Savvy Diabetic, Diabetes Stories, Diabetogenic, Embrace, and Scott’s Web Log. But there used to be well over a hundred.)

I am not 100% ready to abandon Test, Guess, and Go. Amazingly I still have readers and Google links my posts to searches for things like Tandem occlusion alarms. I periodically get emails from people wondering if I am okay since I haven’t written in so long. Once in a while I have diabetes friends on Facebook or in real life who tell me how much they miss my writing. I still pay over $100 a year to WordPress for a premium blog and the url. If I knew how to back up my content on a free blog and just pay for the url, I might do that. But it is easier to just pay the money and stay with the status quo.

There are things about my blog that should probably be updated. The name of the blog mostly refers to testing blood with a meter. Test, Guess, and Go. Test it with a meter, guess what the heck is happening, and then go on with life. The evolution of CGM technology from a cra*pshoot number to a mostly trustworthy technology has changed the landscape of my diabetes. I get numbers every 5 minutes and graphs with trends. Alarms vibrate or scream if I am going too low or too high. A Tandem pump adjusts my insulin in response to these numbers. I suppose that I could change the blog name while keeping the same url but then I would have to redo the header and graphics. I could change the WordPress theme but I am terrified that everything would go up in a puff of smoke and disappear. Remember I am 70 years old. Although I am somewhat tech savvy, I remember the early days of PCs when it was easier to get a new computer than figure out how to fix a problem.

If I really wanted to move my blog into the future, I would need to update the information provided in many posts. Quite a few links I previously shared are no longer active. Some of the information is outdated. For example I started my yearlong Countdown to Medicare series before CGMs were reimbursed by Medicare. In a nod to my present life, I did update my thumbnail photo to show my pandemic ponytail.

One thing that I would like to figure out is how to make my older posts more accessible. If someone wants to read my early posts (and some of them are really good IMO!), you have to click on a month and year. No way to start at the first post and read uninterrupted to the present. But will I do that? Probably not. 

I don’t know how much I will keep writing in the future. But I still have strong opinions on things diabetes. I wake up most days trying to do better and rarely get into too much of a funk about my d-life. My doctor thinks I am doing great and I work at accepting what I hope is “good enough.” I truly am in awe of how difficult Type 1 diabetes is to manage and how well most of us do. I feel a strong connection to my fellow seniors with diabetes and hope that I have words of wisdom for younger people affected by diabetes.

I am still here today. I have started working on another post to publish soon. After that I don’t know. Thanks for reading!  

*******

For those who read my blog from 2013-2015, I want to share the sad news that Sue from Pennsylvania passed away unexpectedly this spring after a fall. Sue wrote passionately about her crusade to get Medicare CGM coverage for her husband and I strongly believe that her emotional writings are one reason that seniors now have access to CGM technology. Thank you, Sue. You truly made a difference and I was privileged to know you. 

About Sue from Pennsylvania

Writings by Sue from Pennsylvania

Control IQ: Like Gerald I Have Tried!

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

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

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?

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

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….