Going Untethered with Control IQ

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

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.

ADA Webinars and Podcasts: Inpatient Care for Covid-19 Patients with Diabetes

In recent weeks Diabetes Connections and The Juicebox Podcast have featured interviews with individuals with Type 1 diabetes who contracted and recovered from Covid-19. These podcasts have also shared conversations with medical professionals discussing the coronavirus and diabetes. While these episodes were interesting, they did not address my biggest Covid-19 concerns as a person with diabetes. How will my diabetes be handled if I am hospitalized with Covid-19? Not if I have a mild-to-moderate case and can mostly self-manage my diabetes. How will it be handled if I am incredibly ill on a regular hospital floor or even in the ICU? Nothing I have listened to or read has answered these questions.

Until now.

For several years I have listened to the podcast Diabetes Core Update sponsored by the American Diabetes Association. The podcast has historically been a monthly review of “clinically relevant” studies from ADA professional publications. Most of the articles address Type 2 medications so the podcast is not usually relevant to me. But I listen anyway hoping to learn something and hear an occasional Type 1 discussion.

In April Diabetes Core Update released about 10 podcasts directly related to diabetes and the coronavirus. Although these podcasts are directed towards medical professionals, they contain the information that I as an engaged patient am starved for.

Last weekend I finally hit the goldmine with two episodes directly addressing the inpatient care of patients with diabetes, particularly those patients on insulin therapy. This population includes all of us with Type 1 diabetes and medical professionals in the trenches are finding that many/most patients with Type 2 diabetes and even pre-diabetes and undiagnosed diabetes are ending up requiring insulin when battling coronavirus. 

The first podcast is titled American Diabetes Association Town Hall: COVID-19 & Inpatient Care for People with Diabetes. The 6 panelists are: Shivani Agarwal, MD, MPH, Albert Einstein College of Medicine; Jennifer Clements, PharmD, FCCP, BCPS, CDE, BCACP, American Pharmacists Association; Robert Eckel, MD, ADA President, Medicine & Science; Irl Hirsch, MD, University of Washington; Melanie Mabrey, DNP, Co-Chair – American Association of Nurse Practitioners – Endocrine Specialty Practice Group; Jane Jeffrie-Seley, DNP, BC-ADM, CDCES, Association of Diabetes Care and Education Specialists. 

The topics discussed include insulin regimens in the hospital, blood sugar targets, use of patient devices such as meters, CGMs, and pumps, how coronavirus seems to affect BG levels, lots of dangerous hypoglycemia, and so on. 

The town hall can be seen as a webinar at this link:  American Diabetes Association Town Hall: COVID-19 & Inpatient Care for People with Diabetes

To access the podcast, go to Diabetes Core Update Podcasts and find this episode which is titled Covid-19 Inpatient Town Hall and was released on April 23. This page will give you the ability to open the podcast in Google Play, Apple Podcasts, or listen on your device.

The second podcast/webinar is titled Inpatient Care Questions April 15 Update and includes questions and discussion related to the topics from the Town Hall. The panelists are:  Robert Eckel, MD, ADA President, Medicine & Science; Irl Hirsch, MD, University of Washington; Mary Korytkowski, MD, University of Pittsburgh.

You can access the webinar at this link:  Answering Your Questions: Inpatient Care Questions April 15 Update.

To access the podcast, go to Diabetes Core Update Podcasts and find the episode titled Covid-19: Inpatient Management #2 which was also released on April 23. This page will give you the ability to open the podcast in Google Play, Apple Podcasts, or listen on your device.

My thoughts:  Although I strongly suggest that you listen to both podcasts, here are some things that I heard. Coronavirus seems to raise blood glucose numbers drastically and many patients require multiple times their normal insulin. Many people who didn’t previously require insulin do need it while hospitalized. IV insulin is frequently used in the ICU but injected insulin is more common on regular floors. Patients are encouraged to bring their own supplies including meters, pumps, and CGMs. As long as you are able to safely operate your pump, you will most like be able to keep it. That might differ in smaller community hospitals. 

Severe hypoglycemia has been seen in some patients, especially elderly patients. For that reason BG levels are often targeted to be in the range of 140-180 rather than 110-180. Nursing staffs are trying to minimize the number of direct patient contacts and will try to bundle BG checks, vital checks, and medication administration into each visit. 

Although there is currently no hard data to support the hypothesis, the medical professionals thought that those with well-controlled diabetes prior to Covid-19 have a better prognosis than those with complications and co-morbidities. But they all considered blood glucose control in the inpatient setting to be hugely important.

I am terrified of contracting Covid-19 and being so sick that I must be hospitalized. Along with most people I know with diabetes, I will continue to stay home most of the time and social distance when I am at the grocery store or walking in my neighborhood. My next project is to organize a Diabetes Go-Bag to use if I do end up going to the hospital. I am currently woefully unprepared for that scenario. 

** Please note that these episodes have somewhat different titles on different webpages, but I think you’ll be able to find them.

Diabetes Daily: How Covid-19 is Affecting People with Diabetes

Background: Several years ago Diabetes Daily teamed with Thrivable Insights to create the Diabetes Research Panel. In late March 1,300 people with diabetes (48% Type 1 and 52% Type 2) responded to a survey addressing their concerns and fears about the coronavirus and what they were doing to protect themselves.

Here is an infographic sharing the results of this initial study. If you would like to read an excellent interpretation of the results by Maria Muccioli Ph.D, her blogpost at Diabetes Daily is available here. Below the infographic is information from Diabetes Daily about joining the ongoing study.

 

This is a copy of an email I received from Diabetes Daily. Please join the project to let your voice by heard!

Dear Friends,

Want to help with the COVID-19 pandemic? Your data can make the difference!

We have donated our rapid research platform to help leaders respond to the epidemic.

Fill out this 3-minute survey to join the project:

Join the Study Covid Project

Your anonymous insights on symptoms, social distancing, masks, the economy, and more will be analyzed by a talented group of epidemiologists and public health experts and shared publicly.

Who can participate? 

The project is open to everyone 18+ living in the USA.

How will my data be used?

Your data will only be used for research purposes. You will not receive any marketing messages. All personally identifiable information will be removed prior to the sharing or publishing of any data.

Who is behind the project?

Thrivable, the organization that created Diabetes Daily, has donated its rapid research platform to this project. The project is led by a group of leaders in public health who have important questions about your attitudes and behaviors around COVID-19. You can see the team here.

Can I share this with family and friends?

Yes! Please share far and wide. You can copy and paste this message to share:

Want to help with the COVID-19 pandemic? Your data can make the difference! Join me and sign up for the Study Covid Project at https://www.StudyCovid.org.

Best,

The Diabetes Daily Team

Coronavirus: Social Isolation in the Desert

I am sitting outside this evening in Arizona basking in blue skies, mountain views, and warm temperatures. I am feeling good and it seems that my arthritis has gone on hiatus. Diabetes is just being diabetes and I am doing my best to ignore it and leave the work up to Control IQ. The coyotes are howling and I hope it is with joy at the day and not for a recent bunny kill. Doves are cooing and a pair of Gambels quail is investigating my geranium pot as a potential nesting spot. Weird crane flies are everywhere with their whispy daddy long-leg look. A pair of mallards has determined that our swimming pool might be their new home. 

But coronavirus is out there. On paper I am at high risk for a poor outcome should I get sick with the virus. 

I wrote the above paragraphs 10 days ago when I was still living in the world of social distancing as a snow day. I knew that things weren’t a holiday but I wasn’t tired of being alone and wasn’t yet worrying about how diabetes would impact my prognosis in the coronavirus epidemic. I wasn’t yet worrying about how horrible it will be to get critically and painfully ill. (I haven’t even had the flu since the 1970’s.) I wasn’t yet worrying about how one of my sons will survive financially when he and his wife both need to work but have no childcare. I wasn’t yet worrying about the endgame of most of the country staying at home. 

I didn’t have a pit in my stomach yet.

I do now. Not every minute of every day but often at 2:30am for several hours. Not all day every day but a lot of the time. It usually disappears when I get to FaceTime with my children and grandchildren. I normally spend a lot of time alone and social distancing is not difficult for me. It allows me to go on solitary hikes in the desert and spend hours every afternoon doing computer jigsaw puzzles. Interestingly I have not been able to find a new Netflix or Amazon Prime series to binge on and I have very little concentration for TV. But other things keep me entertained.

But the pit in my stomach and the stress of the unknown is never far away.

When will it be safe to return to normal? Has our world forever changed and what was normal will never be part of our lives again? Does our country have the leadership to weather this crisis? Will we have enough healthy medical professionals to care for us through this crisis. Will an economic recession destroy as many people as the virus? 

Nothing that I am thinking or feeling is different from most other Americans.

I am writing this post from a life of privilege. My husband and I are comfortable at our Arizona home and we are able to walk around the neighborhood, hike in the nearby desert, and even play golf touching nothing communal on the course. We have enough food to last for several weeks. He has a job and is able to work remotely. I have several months worth of insulin in the refrigerator and diabetes supplies in the closet.

But I know that I am ill-prepared diabetes-wise should I get sick. My husband knows nothing about my pump and CGM. I am not sure that it matters much. If I am too sick to minimally care for my diabetes, I should be in the hospital. If I am hospitalized with coronavirus, my husband will not be able to visit or care for me. Plus he would also likely be sick since we are living in the same house and sleeping in the same bed. There is a good discussion on TuDiabetes about a diabetes checklist for the hospital. I think it is unreasonable to think that my pump and CGM would be supported in a coronavirus crisis, but I like the idea of a file card screaming that I have Type 1 diabetes and require a long-acting insulin. Now that I am a senior, doctors tend to not understand that while I have a lot in common with people with Type 2, I am different and will quickly die without insulin. 

Good things in my life: My husband and I are together and I know that he will take care of me to the best of his ability. I am able to FaceTime with my children and grandchildren. I love them and they love me. We have started a family blog and are sharing words, photos, and videos. My fitness instructor in Arizona is doing a MWF class live on Zoom. My yoga instructor in Minnesota is doing classes twice a week on YouTube. I have a diabetes online world with young and old friends alike. I have friends in Arizona and Minnesota who keep in touch. My husband and I are working hard to use our food efficiently and are varying meat and meatless dinners. Although it may be a blood sugar bomb, we are having French Toast for dinner tonight. Thick white buttermilk bread with lots of eggs, milk, and syrup.

Thick white buttermilk bread with lots of eggs, milk, butter, and syrup. 

A definite good thing.

Bright yellow brittle bush blooms with a bee (yikes!)

Mallard lovebirds at my pool.

A paint with water picture by my 2-year old granddaughter.

Six Weeks: More Thoughts on Control IQ

This is not a “How-To” for Control IQ. I haven’t completely figured it out and for sure I can’t provide much guidance for other people using the system. I think that each of us will have to find a way to succeed (or fail?) with this algorithm and what works for me might not work for you. In fact my road to success probably won’t work for you. Actually at the moment it is not completely working for me. But it is getting better.

I finished my February 13 blogpost with this comment: “Control IQ is a step forward for me. I don’t love it yet. But I think I will.”

A month later I would say something similar. I don’t love Control IQ and occasionally wonder if I should have stayed with Basal IQ. But I am still committed to figuring this out. Even on my worst days I am not tempted to turn off Control IQ because the benefits of 24-hour protection from lows and better-than-before overnights are addicting.

Here are some things that I have learned in the last couple of weeks. Some people may disagree with my analysis of how the algorithm works and I look forward to feedback. For sure I am not quoting the Control IQ User Manual.

*** Use social media and Facebook to learn what is working for other Tandem Control IQ users. Don’t become paralyzed or discouraged when you seen flatline graphs and average BG levels of 100 from other Control IQ-ers. I don’t seem to be able to average BG’s in the 90’s or low 100’s because my insulin keeps suspending with resulting highs later on. But I am willing to learn from others who are succeeding and even from those who are struggling.

*** Consider turning to “professionals” to help to dial in settings. (Every blogger has to give the disclaimer that you shouldn’t do anything without talking to your doctor.) I am such a self-manager of my diabetes that it would never dawn on me to make a special endo or CDE appointment to talk about Control IQ. But I will be very open to suggestions from my doctor when I see her in May. Frankly right now I don’t think that many medical professionals have enough experience with Control IQ to adequately analyze our settings but I know that they will be learning in the next months just as we are learning. If I wanted to consult with someone experienced with hybrid-closed loop systems such as Looping, OpenAPS, Control IQ, and the 670G, I would probably contact Integrated Diabetes Services.

 *** Figure out your goals but don’t be afraid to tweak them as you move farther into this semi-automated insulin delivery system. Consider changing your target range so that you “succeed” within the parameters of Control IQ. Prior to Control IQ, I used a target range of 70-150 and stayed in that range a good percentage of the time. Every week that I used Control IQ I saw my statistics for that range get worse. For me that was discouraging not motivating. My endocrinologist has always encouraged me to use 70-180 and I have switched to that target for a while to boost my mental health. Interestingly my average BG between the two range choices is not different because I am doing the same things to have acceptable BG numbers. But I feel happier seeing a higher time in range in Dexcom Clarity reports. BTW I still use 150 as the high alert on the pump.

*** 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. My solution has been to learn strategies to trick Control IQ into giving me more insulin during and after these suspensions. I first tried manual boluses but that often just prompted Control IQ to suspend insulin again. So thanks to a Facebook friend, I learned about entering “fake carbs” so that Control IQ thinks that the bolus will be matched by carbs. With fake carbs, Control IQ doesn’t automatically suspend or reduce insulin as it might with a manual bolus because it expects carbs to raise your BG level. The downside of this is that your average daily carbs statistic becomes meaningless.

*** Don’t eat. Okay, that is an exaggeration…. But meal bolusing is different for me under Control IQ than previously with Basal IQ or regular pumping. In general I have to analyze what Control IQ has been doing for the last hour or two to decide how much to bolus, how far ahead to pre-bolus, and whether I need to “trick” Control IQ by adding fake carbs to the real carbs. Once again if the meal bolus is preceded by a long insulin suspension, I need the bolus to be larger than if it was preceded by my normal basal rates. I have to be careful with pre-bolusing because Control IQ will likely suspend insulin if it sees my BG dropping too low before eating. Fortunately unlike Basal IQ, Control IQ does not suspend extended boluses and that is a tool I am sometimes using to smooth the action of mealtime insulin. 

*** Simplify your pump settings as you work to figure out optimal Control IQ settings. I initially started Control IQ with my “Normal” settings and the results were not great. Then I created a new profile titled “Aggressive” and it was indeed too aggressive. I didn’t have much insight into what settings were working and which weren’t. So I created a new profile titled “One Rate.” Same basal rate, correction factor, and carb ratio for 24 hours a day. It is very similar to my pre-Control IQ settings although the carb ratio is slightly more aggressive. I have since added one more time period to that profile so technically it should now be “Two Rates.” IMO it is a good idea to use new profiles as you experiment with settings. Eventually I’ll delete most of the extra profiles.

*** Use your experience to help others in the diabetes community. It takes a village to figure out Control IQ and everything related to diabetes.

*** Sell your stock in companies that manufacture glucose tabs. These automated insulin systems are really good at reducing lows. At the same time continue to always have fast-acting carbs available. Control IQ is good, but it’s not a cure.

Summary:  My main goal with Control IQ is to have reasonably good numbers with less effort. My average blood sugar has risen with Control IQ and I expected that. One reason is fewer lows. I rarely see the 70’s and almost never the 60’s or below. The other reason is that I spend a lot of time between 100 and 125 and not much time in the 80’s. I am OK with that. I continue to use Sleep Mode 24/7 with a target range of 110-120. Less effort has not completely materialized and I am still micromanaging. But increasingly I am having longer periods of time when I don’t glance at my pump and just trust the algorithm to do the work. As long as I compensate for long insulin suspensions, that strategy is starting to show some success.

So maybe it is getting easier.

Diabetes Ratings for Restaurants?

I think that there should be diabetes ratings for restaurants.

I don’t mean that they would be rated on how “healthy” their food is or even if the food is high carb. I am mostly smart enough to identify cr*p food and make my choices accordingly. I want restaurant chains to be evaluated for the accuracy of the carb counts in their nutrition information. And maybe I want to add glycemic load to that evaluation. 

I want to know if I bolus my insulin based on the posted carb count of the food I choose, do I have a chance in h*ll of having a good blood sugar result?

Based on my experiences this week and actually over several years, the first failing grades I would give would be to McDonald’s and Panera Bread.

I don’t eat out very often because except for eggs, sausage, bacon, and chicken, I rarely find things to order that aren’t going to trash my blood sugar. Even scrambled eggs aren’t safe because some restaurants add pancake batter to the eggs to make them fluffy. Sometimes the problem is that it is difficult to pre-bolus my insulin if I have to drive to the restaurant. If my blood sugar is slightly low, normal, or even slightly elevated, I believe it is dangerous to take insulin early and run the risk, albeit slight, of an accident, car trouble, or traffic jam that delays my access to food. I always have glucose tabs with me, but who wants to ruin a meal with an appetizer of cherry-flavored chalk?

On Sunday I went to McDonald’s with my 6-year old granddaughter on the way to a theater event. I planned my insulin for 1/2 of a bun with my quarter-pound hamburger. No cheese or condiments. Just meat and 1/2 of a bun. I pre-bolused 1/2 unit of insulin at home and extended another 1 unit over 20 minutes. When we got to the restaurant I bolused for 30 grams of carbs for 1/2 of a bun and didn’t subtract the 1-1/2 units of insulin on board. The nutrition info shows a Quarter Pounder with the whole bun having a total of 35g carb. So 1/2 of a bun bolused for double the carbs with an extra 1-1/2 units of insulin should have worked. Nope. Within 20 minutes I had double-up arrows in the high 100’s and reached the high-200’s at the peak. I frankly think that there is no food that hits my blood sugar faster than McDonald’s hamburger buns. Well, except for the hamburger buns at In & Out Burger….

I blame myself somewhat for this scenario because it happens every time. Every single time. But once in a while I just want to eat a hamburger with 1/2 of a bun. Actually I would love to eat a hamburger with a whole bun…. So McDonald’s gets an F in terms of being diabetic-friendly because the BG impact of its hamburger buns isn’t close to the posted carb count.

And I get an F because I am stubborn and stupid enough to think I can ever succeed at eating there.

I met a diabetes friend at a local Panera Bread restaurant for lunch yesterday. I get more frustrated with Panera than any other restaurant probably because it pretends to be “healthy.” I can’t count the times that I have bolused based on the carb counts provided and had horrendous blood sugars. My game plan is to at least double the carb count on their website and pre-bolus as much as possible. I keep looking for one food besides Caesar salad that I can eat there without bad BG results. I haven’t found it yet. Yesterday I had a bowl of Ten Vegetable soup. The posted carb count was 16 grams. I bolused for 35 grams in addition to a 200% temp basal that I had started 30 minutes earlier. 

I didn’t take a screen shot of the 158 double-arrows up 20 minutes into the meal, but here is a watch screenshot an hour later. Interestingly when I see a photo of the soup on the Panera website, it shows chunks of colorful vegetables. Mine must have been the gruel at the bottom of the pot because there were no chunks of vegetables and it really wasn’t very good. Regardless it was another failed experience at Panera and I really wonder how the nutrition info on their website is determined. Maybe monkeys playing roulette….

Panera’s salads can also be minefields because when I last checked, the only salad dressing without sugar or honey is the Caesar dressing. I suspect that my best menu choice would have been a Caesar salad with chicken and no croutons. However, I am coming off a recent bad experience of being sick after a salad at a local restaurant. Was it the shrimp or lettuce? Not sure, but I am avoiding restaurant salads for the moment.

In my book, Panera Bread gets an F-rating for the reliability of the carb counts. Once again I get an F by continuing to think I can eat any of their food. I wonder if I would do better by just having a sandwich, savoring every bite, and just accepting the high BG despite a magnum bolus. Or maybe just having iced tea and not eating.

But the rumor is that carbs float in the air at restaurants and your blood sugar is going to spike no matter what…..

Are these restaurant experiences the end of the world? No. My blood sugar eventually returned to a good range. The major frustration was trying to do diabetes right by considering carb counts and taking extra insulin and still failing miserably.

Oh well, another imperfect day in my life with diabetes.

The Best of Abby the Black Lab

Last Friday my beloved Abby the Black Lab passed away. She was 13-1/2 years old and had severe arthritis and many other health problems. I sit here today mired in guilt as though I could have made her young and healthy again. She was the perfect dog and I miss her so much. We are not going to get another dog in the near future (or ever?) and I think it is going to take me a while to come to terms with my sadness.

Although she had slacked off in recent years, Abby the Black lab was a popular author on my blog. She did not have diabetes nor did she ever notice any of my high or low blood sugars. But she was a wise dog and not shy about sharing her wisdom about life and blood sugar dysfunction.

Abby the Black Lab Discusses DSMA Live

Abby made her blogging debut in 2013. Those of us who have lived in the Diabetes Online Community for a long time will remember the Cherise-Scott-George podcast which introduced me and many others to the movers and shakers in the DOC. More importantly Abby introduced herself as a diabetes fashionista of sunglasses and hats.

Abby the Black Lab Discusses Nutrition

Abby confirmed her status as an expert in fashion and food in this post.

For sure she knew that despite what your vet and diabetes educators tell you, dog food and vegetables do not taste nearly as good as donuts and potato chips. And sometimes a girl just doesn’t want to measure her food.

The Great Divide in the DOC

This is probably the best post ever published on my blog. Abby had incredible wisdom to state that we need to stop the arguments between Type 1 and Type 2 diabetes and unify into a powerful advocacy bloc.

“Although you seemingly-civilized people with Type 1 diabetes sometimes argue with those who have Type 2 diabetes, you pancreatically-challenged doofuses should remember that you are stronger together than apart.  Diabetes in all of its evil forms is the enemy and you should join hands and conquer it together.”

But Abby was a dog and she knew that there was a much more important battle than diabetes for dogs and cats.

“More importantly, we dogs and cats should toss aside our petty differences and stop the harassing hisses and barks.  With a united army of canines and felines, we can fight a cosmic battle against our common enemy.   A enemy who taunts and teases us in our own yards and through our own windows.  An adversary who seems to think that dominance is achieved through water-skiing videos.  We have seen the enemy and the enemy is……..SQUIRRELS!”

Abby the Black Lab Discusses Community

I loved this blogpost and the magic mailbox is still a popular fixture in my Arizona community. Abby had been slacking off for a while but was prompted to write saying: 

“Although I am overworked protecting my home from coyotes, rattlesnakes, and FedEx drivers, I suppose I can take a minute to discuss dog biscuits, mailboxes, and people with diabetes.”

Abby reminded us that community is important, maybe the most important part of the DOC:

“By dispensing magical treasures every day, this mailbox helps build a bond of community in the neighborhood. Community. That’s important…. I like to think that blog comments, tweets, and Facebook remarks are dog treats where you touch base with people and remind them that they are appreciated and that the diabetes community is important.”

Some of my readers will remember #dblogcheck day and most of you won’t. But viewing the diabetes online community, Abby summed it up fabulously:

“No one has ever complained about too much love, respect, and validation.”

That’s what the diabetes online community gives us:

Love.

Respect.

Validation. 

Thank-you, Abby. ❤️

 

Blogposts by Abby the Black Lab. May She RIP.

https://testguessandgo.com/2013/05/29/abby-the-black-lab-discusses-dsma-live/

https://testguessandgo.com/2013/07/15/abby-the-black-lab-discusses-nutrition-2/

https://testguessandgo.com/2013/09/19/the-great-divide-in-the-doc/

https://testguessandgo.com/2014/05/13/a-diabetes-poem/

https://testguessandgo.com/2015/03/10/abby-community/

A Looping Failure

A few days ago I unscrewed the top of my RileyLink case, removed the tiny circuit board, and disconnected the battery. I put the box of pods back in the closet and retrieved my Tandem pump from the medical supply clutter box.

I am officially declaring my Looping experiment to be over.

If you don’t know what Looping is, it is a user-created app for an automated insulin delivery system that pairs an Omnipod or old Medtronic pump, a CGM, and a computer algorithm. If you want to learn more, read Loop Docs and check out the Looped Facebook group. Earlier this summer with files made available by the rockstars of the Do-It-Yourself community, I used my Mac laptop and a newly-acquired Apple Developer Account to create the Loop app on my iPhone. It was a miraculous experience for an experienced person with diabetes and a relatively inexperienced techie.

But I hated the pods. They often hurt and my insulin absorption was erratic. The occasional dark red/purple bruises were quite horrible and proof that diabetes can be a blood and gore sport. Some days the pods worked great. Other days I would bolus and bolus (or Loop would basal and basal) with seemingly no effect on my blood sugar. 

Previous to the opportunity to try Looping with an Omnipod, I was never interested in pods. I was convinced that they would be more awkward on my body than a tubed pump and infusion set. This feeling is why it is important to have CHOICE for those of us with diabetes. As much as I hate pods, there are people who despise tubes and love podding. I started using pods a few weeks before starting to Loop and quickly discovered that even changing pods every two days didn’t give consistent results. But I was excited at the possibility of automated insulin delivery and persevered.

In order to have success Looping, your pump settings must be close to perfect. Basal rates, bolus ratios, and insulin sensitivity factors are hugely important. My experience was that settings which worked well one day were abysmally wrong the next day. Because of my variable results with pods, I was pessimistic that I could get settings that would work consistently.

But it would be unfair to blame all of my Looping problems on pods. I was an emotional Looper and incredibly impatient when things didn’t go well. Instead of methodically problem-solving, I either randomly changed pump settings or in frustration went back to my Tandem pump for a couple of days. I was not good at relinquishing control over my insulin delivery and couldn’t move past 42 years of being the brain for my diabetes.

All along I have known that my future is with Tandem. In the last year I have been frustrated at my inability to use Basal IQ because of Dexcom’s delay in providing seniors with the Dexcom G6. But it will come and I am cautiously excited about the Tandem Control IQ hybrid-closed loop that that will be available late this year or early next. I thought Looping would be a good experiment for the months while I continue to wait for G6. 

Longterm using an Omnipod is incredibly expensive under Medicare in comparison to a tubed pump. My Tandem pump, its supplies, and insulin are covered under Part B where Basic Medicare pays 80% of the cost and my Supplemental plan pays the remaining 20%. Thus I have no out-of-pocket cost. Omnipod is covered under Medicare Part D pharmacy benefits. With my Cigna plan, the pods were Tier 3 with a $405 annual deductible and then hefty copays. Plus my insulin was provided under Tier 3 pharmacy benefits with copays and donut-hole repercussions. 

One reason that it was easy for me to abandon Loop is that prior to Looping, my diabetes numbers were mostly “in range.” Interestingly I compared 2-week Dexcom Clarity reports between Looping and my Tandem pump and the statistics were virtually identical. My hope with Looping was to reduce the mental burden of diabetes and it never really happened. I had some wonderful overnights where Loop prevented lows and highs and I woke up at a steady BG of 93. But I had just as many nights with constant Dexcom low and high alarms. In general I wasn’t one of the experienced and ecstatic Loopers who saw meaningful improvements in their diabetes life. And remember I was too impatient to keep working at it.

Will I try Looping again? Maybe, maybe not. There were things I loved about Looping: being in charge of my settings, targets, and alerts, controlling my diabetes from my iPhone and Apple Watch, and the potential to free up brain width that never rests with diabetes. The Looping community is incredible with help, expertise, and support given to all-comers (except the grouchy ones). Automated insulin delivery is the future but we are still limited by hardware, the speed of insulin, and the infinite complexity of Type 1 diabetes.

Today I am very comfortable with my decision to abandon Looping. I am relieved to be back using a tubed pump with less pain and somewhat more predictable results. There are definite warts using my Tandem pump with occasional occlusion alarms and non-customizable annoying alerts. But I am comfortable being back to “what I know.” I learned a lot while Looping and for sure gained more appreciation of how incredibly difficult it is to manage diabetes. I was once again reminded that while improvement is possible, perfection is not.

If you are interested in Looping, I encourage you to check it out. My experience was only my experience and not an indication of how the system will work for you. Lots of people are having great success with this do-it-yourself app and I am grateful for having had the opportunity to Loop and then the opportunity not to Loop.

Type 1/Type 1 Parent Conversations: Themes in Diabetes

In the summer of 2014 Kate Cornell and I launched a series of blogposts called Type 1/Type 2 Conversations and we talked about weight, the great outdoors, friends and family, and food. Shortly afterwards my co-bloggers at the time, Sue from New York and Sue from Pennsylvania, roped their husbands into two conversations with spouses (here and here). I had hoped that the idea of conversations would spread into the DOC, but it never did. However in the back of my head I knew that someday I wanted to have a “conversation” with a parent of a child with diabetes. 

So here we are five years later and I recently had a meetup with Lija Greenseid (LEE-yuh GREEN-syd) of St. Paul, Minnesota. Lija is the parent of a young teen diagnosed with Type 1 diabetes 6 years ago. If you have followed news coverage about the Caravan to Canada to buy affordable insulin, you may recognize Lija and her Thelma & Louise-esque depiction as the “rule-abiding Minnesota mom steering her Mazda5 on a cross-border drug run.” Although there is no doubt that the issue of insulin pricing is extremely important, this blogpost is not about advocacy. It is about listening to the story of a mother of a child with Type 1 diabetes and sharing my experience as a senior who has lived with diabetes for 42 years. 

Rather than give a transcript of my visit with Lija, I decided that discussing the themes of our diabetes experiences would be the best way to share our conversation. I think for the most part our diabetes themes are the same; we just experience them differently. Hopefully that thought will make sense to you by the time I finish this blogpost.

Diabetes themes:  Fear, thriving, guilt, social media, hope.

Fear and thriving came up in the first 5 minutes of our conversation and we never strayed far from these topics. 

Laddie:  “Did you know anything about diabetes?”

Lija:  “No, just that it was bad and it was forever.” 

She went on to say that the doctor said “Oh, it’s not a death sentence” and in typical motherly fashion, all she heard was “death sentence.” Although initially terrified at her daughter’s diagnosis, she was quick to give credit to St. Paul Children’s Hospital for providing the family with a “thriving education” and “high quality information” rather than fear and gloom. They were trained in carb counting and multiple daily injections and sent on their way to battle hyperglycemia and hypoglycemia. They were encouraged to follow through with a planned family trip less than two weeks after leaving the hospital. 

Where did Lija learn the most about fear? You’ll probably guess social media and be absolutely correct. 

Lija: “There is so much fear now. In a large Facebook parent group I felt hugely stressed by the pervasive message that ‘You’ve got to get up at night and check your kid or otherwise he’ll die.’” 

Lija went on to express gratitude at “being rescued by people like Moira McCarthy and her little gang of these thriving parents” who invited her into a smaller more-positive Facebook group. This group that encouraged her to be comfortable letting her daughter spread her wings and participate in normal childhood activities.

When I asked Lija what was her biggest worry about diabetes, she indicated that it was how her daughter will navigate through the teen years, college, and young adulthood with diabetes. 

Lija:  “I think I worry most about the emotional effects. Getting through adolescence and young adulthood without getting burned out and not taking care of herself. I am much more fearful, particularly her being a girl, about body image issues and eating disorders.”

In regards to my Type 1, I don’t see much fear when I look back. I knew so little about diabetes when I was diagnosed that I didn’t know to be afraid. I should have been and still should be more afraid of lows.

Laddie: “I wasn’t afraid because the Internet hadn’t been invented yet to tell me to be afraid.”

Lija: “I don’t know whether people with diabetes get as much fear for themselves as parents do.” 

Laddie: “I think when you’re living the highs and lows, it is easier to just move on from moment to moment rather than being an outsider (parent) looking in.”

Lija asked me about my fears and the main one I have is when due to age or illness that I am no longer able to care for my diabetes. I am terrified of being in a nursing home and am convinced that no one else can adequately care for me. So I guess you could say that we both have worries that are influenced by stages of life: teenage and 20’s for her daughter and old age for me.

Lija is not incapacitated by fear and her diabetes parenting is positive. In the six years since her daughter’s diagnosis, she has been dedicated to not letting diabetes be a roadblock to anything her daughter would like to do.

Lija: “What is important is to keep her safe but to let her have as much freedom as possible.” 

I think Lija and her husband are doing a good job in this area as their daughter went on a multi-week international trip this summer with no parent chaperones allowed. The photos I saw on Facebook are testament to a child thriving with and despite diabetes. 

As I look back at my 42 years with diabetes, I like to think that I have thrived and not been held back by the diagnosis. But I do recognize that I have been changed emotionally and physically and that I would probably be a different person today (better or worse?) if I had not had diabetes.

Guilt and self-blame were themes that popped up frequently in our discussion. We  had similarities and differences in how we viewed these emotions. I was very open that every time things go badly with diabetes, I blame myself. Eating chocolate-covered donuts: my fault. Unexplained overnight high: my fault. Pump problem: my fault. Low following a rage bolus: my fault. I know and Lija also confirmed that those things weren’t my fault and I am not traumatized by guilt. It is just a background persona in my diabetes world. 

Lija’s parenting philosophy is based in doing everything to prevent her daughter from blaming herself for diabetes and out-of-range blood sugars. Meter and CGM results are just numbers to base treatment decisions on not successes or failures. I thought it was interesting that Lija’s main worry about guilt was for the future. 

Lija: “My biggest fear is that I didn’t do enough as a parent now and that’s she’s going to end up with complications.”

Laddie: “So it’s your guilt. I would say that you’re absolutely crazy.

Lija: “I know that, but if I’m really honest, what if she gets complications and I find out I should have gotten up more, I should have restricted her diet, I should have done whatever to make sure her A1c was normal while she was under my care? And the rational part of me says that is not the case and finding this balance (between physical and mental health) is important.”

Laddie: My endo says I don’t have to be as good as I am. But I don’t know how to do it any differently. And I eat too much cr*p food and wish I were better at that.”

Lija: “That guilt of not doing enough unites everyone who is touched by diabetes. I’m trying to battle against this.”

I believe Lija is taking some of these emotions onto herself so that her daughter doesn’t have to deal with them. But she admits that her daughter is very quiet and doesn’t share a lot about her diabetes feelings. She doesn’t hide her diabetes as I did for many years. She wears her pump on her waistband and her Dexcom on her arm. But I think that all of us with diabetes have an internal dialogue that we don’t share with anyone. Or maybe that’s just me?

Since I met Lija on Facebook, it was a certainty that diabetes social media would be a topic. We discussed the negatives: fear, criticism of others, and the unending pressure that perfection is not only possible, but expected. But we agreed that the positives outweighed all of the bad stuff.

Laddie: “I’m pretty open that everything I’ve learned about diabetes in the last 15 years has been online.”

Lija: “It’s all free. It’s just people who want to help others in the community…. The strong relationship with moms whom I’ve known for 6 years has taken me from being alone and scared to knowing that this is going to be OK. That support is so important.”

I concluded our discussion by asking Lija about her hopes for the future.

Lija: “My hopes for her are that diabetes continues to be something in the background. That technology and treatments such as beta cell transplants continue to make diabetes easier and easier.

And most importantly:

Lija:  “That she can continue to be an amazing kid.”

Although both Lija and I hate diabetes and wish that it had never entered our lives, our conversation ended on a hugely positive note.

Lija:  “Look at the great things it (diabetes) does. It brings people together.”

Conclusion: Shortly after I talked with Lija, I read an article by a D-Mom who is also a nurse and a PWD.  She wrote: “As someone who lives in three worlds, a person with T1D, a healthcare provider, and a D-parent, I can say, at this point in my life, parenting someone with Type 1 diabetes is the most difficult role of all three and much harder than I ever expected.”

For sure I believe that and have always been grateful that I have diabetes and not my children or grandchildren. Lija didn’t have that choice but if I had been a D-parent, she is the model of the type of parent I would hope to have been.