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.

Initial Thoughts on Tandem Control IQ

I started using Control IQ on my Tandem X2 pump two weeks ago.

In a mid-January blogpost I mentioned postponing the decision to move to Control IQ and just staying with Basal IQ. For those of you who don’t follow diabetes tech much, the main difference between the two algorithms is that Basal IQ only addresses low blood sugars and Control IQ works to limit both highs and lows. But along with addressing highs, Control IQ targets a higher range than I am comfortable with. For sure the biggest issue about the decision to update the software of a Tandem pump is that if you don’t like Control IQ, you cannot go back to Basal IQ. You’re stuck.

It was a joke to think that I would delay the opportunity to update my pump to Control IQ. I admit it. 1) I am a diabetes-tech junkie and 2) I have no willpower.

So here I am with Control IQ. There was a poll in a Facebook group this morning that stated “I have been using CIQ for at least two weeks and….” The possible answers were a) Love, b) The jury is still out on that, c) I don’t love it or hate it, d) I am so excited to get it, and e) If I could go back in time, I should have stuck with Basal IQ. 

I voted for c) and then commented: “I like Control IQ but am still micro-managing. So it’s not Love yet, but it’s a strong Like.”

Because I had a good A1c and TIR (time in range) before Control IQ, the main proof of success for Control IQ will be if I can get similar or slightly higher numbers without micro-managing. Without diabetes on the brain all of the time. Without constantly looking at numbers and either taking small boluses to correct or rage-bolusing when I am frustrated. There is a lot of room to improve my life with diabetes but I am not willing to accept an average blood sugar of 150. But I am willing to camp out in a range of 100-120.

I am being what is called a “Sleeping Beauty.” That means that I am using Sleep Mode 24 hours a day and that uses basal adjustments to target a range of 112.5-120 but does not include auto correction boluses. In contrast Normal Mode is okay with blood sugars up to 160 and no auto boluses unless BG is predicted to be above 180. Although my endocrinologist would say that those numbers would be fine for me, I want to stay lower and know that I can most of the time. There is a chart on this page showing the ranges for Normal Mode.

Many people have found that they need to adjust their pump settings to be successful with Control IQ. Many or most users have written on Facebook about making their settings much more aggressive. My initial days with Control IQ were rocky and I rarely had BG’s as low as the 110-120 range, even overnight. So I created a new pump profile titled “Aggressive.” And it was aggressively aggressive with high basals and correction factors that I had never previously used except when on steroids. Ultimately this aggressiveness was counter-productive because my basal insulin kept being reduced or suspended for long periods of time and that resulted in highs later on. This pump screen photo is an ugly result of too aggressive settings. My basals were reduced and suspended for almost 3 hours.

So then I created a new profile titled “Control IQ” which is somewhere in the middle between my previous “Normal” setting and the “Aggressive” setting. I sound like Goldilocks and the Three Bears with this porridge is too hot, this porridge is too cold, and this porridge is just right. There have to be some pump settings that are not too strong and not too weak, but just right!

Ultimately I think that minor adjustments to the Control IQ profile will be a good place for me. It uses about 10% more insulin than the pre-Control IQ “Normal” profile and isn’t overwhelmed by too many long insulin suspension. 

Meals are still hard to figure out with Control IQ. Sometimes when I pre-bolus for carbs, the system suspends my insulin and that is counter-intuitive to the BG rise that I know is coming. My current solution is to just eat lower-carb meals. That isn’t much different from how I normally eat but I need to get better at dosing for what I want to eat. I have been learning new things every day both from my own experiences and those of others on Facebook. One could argue that I shouldn’t get pump training from Facebook but I don’t think that endos and CDEs have enough experience with Control IQ yet to give expert advice. Plus we know that those of us with diabetes living in the trenches really are the experts.

Previous to using Control IQ I always consulted my phone and watch to see what was going on with my blood sugar. With Control IQ I am a pump junkie. My home screen shows red areas where insulin was reduced or suspended. A little diamond shows gray for normal basal rates, blue for increased rates, yellow for reduced rates, and red for suspended insulin. The Control IQ history is fascinating but it takes ten (!) button pushes to access it. It shows at what times and how my basal rates were adjusted. In the future Tandem will have a phone app that will mirror my pump screen. That can’t come soon enough because I keep pulling out my phone to get info that is only on my pump.

Be patient, Laddie. Be patient. It is coming.

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.

I’ll say it again. I want my diabetes to be easier.

Ultimately I believe that all hybrid artificial pancreas systems (Tandem Control IQ, Medtronic 670G, Omnipod systems to come, and even do-it-yourself Loop systems) are limited by the speed of insulin. We need faster insulins with shorter durations. We need the ability to set our own target ranges. We need CGM systems that are even more accurate than today’s models.

But it is all coming. Step by step by step. 

Control IQ is a step forward for me. I don’t love it yet. But I think I will.

 

*The Goldilocks image was purchased from Shutterstock.com.

Diabetes Tech: Moving into the Future

2020 has brought long-awaited changes to my life with diabetes. I am using my second Dexcom G6 sensor and so far it has been fabulous. Of course there is something quite pitiful that a diabetes device is the coolest thing in my life and I am not bragging about a new Tesla or Coach purse. But that’s life with a chronic disease….

Those of us on Medicare are late to the G6 game and you can find tons of reviews online and don’t need a review from me. But I will quickly say that the insertions have been painless and I am seeing more consistent accuracy with G6 than I ever saw with G5. (And I considered G5 to be very good.) Here is an image from Day 9 of my first sensor.

I am thrilled with not having to calibrate the sensor. One, it is not required for accuracy in most cases. Two, it eliminates the constant calibration notifications on my phone, watch, and pump. I calibrated the first sensor twice. On Day 6 it was reading super low in the 50’s when my BG was 110. A calibration quickly brought it back in line without the delays or rebounds common with G5. But the next day all of a sudden the sensor was reading too high and I had to do a reverse calibration of the previous day. The two calibrations essentially cancelled each other out and I wonder if I shouldn’t have done the first one. To be determined as I gain more experience….

If my first two sensors are a valid test, I can say without doubt that Dexcom G6 is an improvement over G5. But the biggest change in my diabetes tech life is….

Basal IQ.

As described on the Tandem Diabetes provider website: “Basal-IQ technology uses a simple linear regression algorithm that uses Dexcom G6 CGM values to predict glucose levels 30 minutes ahead based on 3 of the last 4 consecutive CGM readings. If the glucose level is predicted to be less than 80 mg/dL, or if a CGM reading falls below 70 mg/dL, insulin delivery is suspended. Insulin delivery resumes as soon as sensor glucose values begin to rise.”

For many years I used temporary basal rates of zero to head off lows. But frankly although it was a helpful technique, it didn’t always work great. The insulin suspension took too long to work and often resulted in highs later on. The difference between my attempts at manipulating insulin and Basal IQ is that the Tandem pump suspends insulin predictively. It is smarter than I am. I am smart, but Basal IQ is smarter.

I have been using Basal IQ for 2 weeks and there is no doubt that I have had fewer lows. I have had a few nights where I had no Dexcom alarms for lows. For me that is monumental. But in typical diabetes fashion I have had a few nights with moderate highs that repeated boluses are slow to bring down. There is some comfort in knowing that I can bolus more aggressively than in the past because Basal IQ will ameliorate (but not necessarily prevent) the inevitable resulting lows.

One thing I like about Basal IQ is that I can chose no notifications when it turns on and off. I am a poster child for alarm fatigue with my diabetes devices. Basal IQ prevents a lot of my lows resulting in few alerts from the Dexcom app. But I still rarely have a night with no diabetes issues and either need to completely stop snacks in the evening or raise my high alarm threshold.

I think it is interesting that Basal IQ can be considered to be a basal test. One might argue that if you repeatedly have a 3-hour period overnight where your basal is suspended for almost the whole time, your basal rates might be too high. Or if you have a period of sustained highs and never have suspended insulin through another period, maybe your rates are too low. I assume that somewhere in between is the “sweet basal spot.” But maybe not — because I have always suspected that there is not a perfect basal profile that works for every day. Remember the Diatribe 42 factors that affect blood sugar. 

In the online community, especially the Seniors with Sensors group on Facebook, there are many seniors doing really well with their diabetes. The definition of “really well” differs from person to person. But at my age if you’re satisfied with your care, your D-numbers, and have a supportive doctor, I think you’re doing really well. Some seniors using the Tandem pump and Dexcom G6 are thrilled with Basal IQ and appreciate help avoiding lows. I am mostly in that group. Others are frustrated with post-insulin-suspension highs or are convinced that a sensor-augmented insulin delivery system can’t match their manual results. A lot of seniors are going to have a hard time giving up manual control of their diabetes and their concerns are valid. In contrast the diabetes world has a whole generation of CGM users growing up not knowing anything other than complete trust in their sensors. And soon that will be the norm, not we old folks who used pee-strips, urine-testing chemistry sets, and 15 BG meter tests a day.

Tandem’s Control IQ has been approved by the FDA and will soon be available via a software update to all of us with in-warranty Tandem X2 pumps. Even those of us on Medicare! My A1c and average BG will rise if I use Control IQ. Will the reduced mental burden be worth it? Statistics and my endo might argue that I would be healthier and living with less risk if my A1c increased. Am I old enough that I should be modifying my targets and treatment? Do current risk studies for seniors with Type 1 diabetes reflect the adoption of CGM technology that protects us from most severe lows? How good does my diabetes control have to be? The questions go on and on.

I know people online who will never adopt new technology that they don’t trust or that might raise their A1c’s out of the low 5’s. I know others who are always open to trying new things and are willing to take some risks on the path to diabetes nirvana. And for sure there are people who have struggled every day of their diabetes lives and are willing to let smart technology take control of their physical and mental health. I am not sure exactly where I stand on these decisions and know that I will be writing more in the future about Control IQ.

At the moment, I am still learning Basal IQ and feel my D-life has been improved with this technology and the Dexcom G6. One roadblock that might prevent me from updating my pump to Control IQ is that I will not have the option to go back to just Basal IQ. They are completely different pump software configurations and algorithms. By going with Control IQ I am limited to the programmed target blood glucose levels for highs and they are higher than I currently target. Basal IQ just addresses lows and leaves highs to me. Does it matter? I don’t know and plan to stay on the sidelines a while before making the commitment to change.

If you are considering Control IQ, I suggest that you listen to this Diabetes-Connections podcast where Stacey Simms interviews Molly McElwey Malloy from Tandem. After listening to the podcast I was comfortable that Control IQ would be good for me. But I know I need to learn more before committing. This coming Wednesday (1/15/20) Tandem will have a live presentation on Facebook explaining Control IQ and answering listener questions. I don’t have a specific link but here is a screenshot of the email i received from Tandem. For sure you’ll hear more from me in the future about Control IQ–my opinions and those of my fellow seniors with diabetes.

 

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/

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. 

Diabetes, Just Tell Me!

Lately I have been having days, well actually weeks when I am starting to question how I deal with my diabetes. I have used an insulin pump for 15 years and don’t really want to change back to injections. For me a pump is more convenient and allows multiple basal rates and easy bolusing through the day. I have used a continuous glucose monitor for 10 years and can’t or don’t want to imagine doing without the constant blood glucose numbers on my phone and watch. 

But lately I feel as though my tech has been failing me and I’ll show that through a couple of photos below.

The first day of a new Dexcom G5 sensor:

The graph of a pod starting to fail after less than two days. The downslope reflects a new pod:

But what if it isn’t my tech? What if it is just my body and my diabetes? I have seen a ton of crazy up arrows on my Dexcom in recent weeks and many of them have been unexpected. I am quick to blame the sensor but unfortunately most of the time my meter has confirmed the Himalayan-esque rises and falls. But sometimes it is the sensor. I have had numerous high BG numbers that have not resolved until I changed out a Tandem infusion set or these days, a new Pod. But sometimes the highs are from last night’s pizza or the second or third glass of wine. 

Most of the time I just don’t know. Why doesn’t diabetes just tell me the answer!?!

I know that my life is a constant science experiment and I am usually pretty good at figuring out what is going on. Although I get frustrated, angry, and guilty at some of my aberrant Dexcom graphs, I do my best to correct the numbers as quickly as possible. My A1c’s continue to be good and I feel good most of the time. And when I don’t feel good, arthritis is the culprit not endocrine issues. But Type 1 is always in the background laughing at my attempts at perfection. I‘m caught in the hamster wheel of trying to get it right. All of the time. But not changing my ways.

Sometimes I think the hardest part of diabetes is not always knowing the “why’s” of what is going on. Is my rising blood sugar this evening a result of what I ate for dinner? Or is my infusion site giving out? Is there a problem with air in my pump cartridge? Is the insulin old and compromised by the heat of my rechargeable pump battery? Most of us are familiar with the list that Adam Brown of Diatribe compiled titled “42 Factors That Affect Blood Glucose.” They all make sense but a checklist of possibilities doesn’t always help me dig out of today’s hole.

Why can’t degraded insulin turn purple? Why can’t my Dexcom have a footnote specifying whether a number is reliable or fantasy? Why can’t my body tell me whether an early morning high is hormones or a pod gone bad? Why can’t I have the type of diabetes that only drifts high and low instead of Dex double-upping or double-downing? I could go on with more why’s but I think you get the picture. 

To tell you the truth, I suspect that if blood glucose numbers were the #1 aim in my life, I would be better served by eating a Bernstein-ian ultra low carb diet and using a cocktail of insulin by injection. Although tech is great, I am lately not finding it to be very reliable. But I am stubborn and am somewhat addicted to the toys and challenge of diabetes tech.

So instead of going back to the basics, I am currently using an Omnipod in anticipation of starting to Loop. I have used three pods and not one of them has made it to 48 hours before soaring blood sugars. And I don’t know why. The idea that Looping with Omnipod is going to be successful for me is probably a pipe dream.

I think I might be dealing with diabetes distress but that’s not the subject of this post….

Diabetes and Older Adults: Modifying Targets and Treatment?

I am 67 years old and have lived with Type 1 diabetes for over 42 years. In the last year I have read a lot about the possibility that I should consider modifying the intensity of my diabetes regimen and relaxing my targets. My endocrinologist suggested the same thing during my December visit saying that I have a lot of cushion in my numbers and could raise them without risking complications. Okay, she actually said I don’t have to worry about complications 20 years down the road…. Doesn’t she think I’ll be an active and vibrant 87-year old?

An article was recently published in The Journal of Clinical Endocrinology & Metabolism titled “Treatment of Diabetes in Older Adults: An Endocrine Society Clinical Practice Guideline.” The conclusions of the fairly long article were stated:

“Diabetes, particularly type 2, is becoming more prevalent in the general population, especially in individuals over the age of 65 years. The underlying pathophysiology of the disease in these patients is exacerbated by the direct effects of aging on metabolic regulation. Similarly, aging effects interact with diabetes to accelerate the progression of many common diabetes complications…. The goal is to give guidance to practicing health care providers that will benefit patients with diabetes (both type 1 and type 2), paying particular attention to avoiding unnecessary and/or harmful adverse effects.”

I was able to access the entire article online and was optimistic that I would find information relevant to my current age and diabetes status. The article addressed all seniors with diabetes which we know is mostly Pre-diabetes and Type 2. But Type 1 was specifically addressed in areas where our needs might differ from those with Type 2.

In general I found the article to be “unhelpful.” If you want to check it out, I suggest that you just read the first couple of pages which is the “List of Recommendations.” Most of the text after that was repetitive and didn’t provide specific guidance beyond the introductory list. 

Throughout the article the words and phrases that jumped out at me were heterogeneity, minimize hypoglycemia, simplify management, duration of diabetes, overall health, cognitive impairment, fall risk, and cardiovascular disease. Those are hugely important considerations for me and all people with diabetes. Unfortunately I have a hard time seeing myself in this article because the scope of the age and health status categories are too broad. Although the authors emphasized the heterogeneity of this population, I believe there was too little distinction between an active and relatively healthy 67 or 72 year old and someone in their late 80’s in a nursing home. But the authors specifically mentioned seniors who have lived with Type 1 for more than 40 years as a group that should be targeted for de-intensifying management. And that’s me.

Slightly off-topic:  As I was writing this blogpost, I read in the Minneapolis paper that Best Buy has purchased GreatCall to expand the “retailer’s connection to seniors.” As I was multi-tasking with my laptop, iPad, and iPhone, I shuddered at: “a diverse portfolio of devices tailored to older adults — including simple flip phones with large buttons and extra bright screens, wearable alert devices and a line of sensors for high-risk seniors that monitor daily activities at home.” Just as medical professionals need to consider seniors with diabetes who have come into the 21st century with pumps, CGM’s, low-carb diets, and the ability to maintain near-normal A1c’s, tech companies need to move beyond the stereotype of Grandma with a flip phone.

There may come a day when I need to simplify my diabetes regimen. But that is not today as I have recently ordered a Riley Link to experiment with looping using an Omnipod tubeless pump and my phone as the controller. I continue to be excited by new D-technology and don’t have cognitive impairment that limits my treatment options. Heck, the process of getting the medications and supplies that I need under Medicare require vigilance, organization, and super-cognition! I can still recite my 14-digit library card number and can easily remember 6-digit codes texted by Amazon and my bank.

My guess is that the “average” population of seniors who have lived with diabetes for 40, 50, and 60+ years is different than the seniors that I know online. Those of us involved in diabetes social media tend to be knowledgeable about our diabetes and highly motivated. Some of us have diabetes complications; some of us have other health issues; some of us struggle to get the care that we require. But as a group we are a bunch of opinionated, hard-headed seniors who battle for the medications and technology we want and need to keep us healthy. We are not ready to settle for high A1c’s and yesterday’s medications and tech.

And yes, I need to remember that someday I may need a flip phone with large buttons and an extra bright screen. I may be in a nursing home where I cannot care for my diabetes. Like many seniors who have lived a long time with Type 1 diabetes, I have no faith that anyone else will be able to care for me. Type 1 is really, really hard even with my experience, motivation, and access to current D-tools. I can’t imagine anyone else doing it nearly as well as I do. My aim is to maintain my health so that I can care for myself as long as possible. And then when I can no longer care for myself, I hope my sister will “do me in.” Okay, that is a warped family joke but my sister who also has Type 1 and I have long joked about and been terrified of becoming incapacitated seniors with diabetes.

I am aware that it might not be a bad idea to raise my BG targets. I have too many moderate lows and know that I am overconfident in the safety net that my Dexcom provides. I haven’t needed help with a low in years. But that doesn’t mean I won’t tomorrow.

But I don’t know how to do diabetes differently.

If I can’t get it right with a target of 90, why should I miraculously be able to get it right at 100 or 120? My diabetes problems are not 10-20 unit variations. I struggle with false occlusion alarms on my Tandem pump and often get skyrocketing numbers when the cartridge gets down to 30 units or less. I don’t go from 80 to 100. I go from 63 to 197 or 241. I am at an age where I don’t have a lot of hormonal excursions. But lately I am seeing lots of up and double-up Dexcom arrows from lowish-carb meals or 2 glucose tabs. Is my Dexcom wonky or am I? My meter would say that it is me. I think it is my pump. For sure my diet has had more carbs than I know that I can handle. The frustration is that I rarely know precisely what is driving my blood glucose aberrations.

Oh cr*p, it’s just diabetes.

At the moment I don’t see changing my diabetes care because of my age. At the same time there are studies indicating that I might live longer if my A1c was higher. But not too high. And not too low. I look forward to looping and hope that it will ease the burden of my care, especially overnight. If not, I don’t expect to be worse off. I look forward to the Basal IQ update with my Tandem pump but it has been delayed for 6-9 months due to Dexcom not supplying the Dexcom G6 to seniors on a timely basis. I look forward to the Tandem Control IQ update but am concerned that Medicare recipients will not get access to the software update due to the likelihood that there will be a charge for the upgrade. 

I know in the short run that it would be a good idea to reduce the number of moderate lows I experience but I am not convinced that can be achieved by relaxing my care and targets. Actually I believe that more intensive regimens like Looping, Basal IQ, and Control IQ can address hypos more effectively. And probably the best way to level out my blood glucose numbers would be to get back on the wagon with more disciplined lowish-carb eating.

So on to another day with diabetes….

March Miscellany

It is a new month and time for opinionated comments and updates.

It Shouldn’t Be This Hard:  Earlier this week I ordered my February Medicare bundle from Dexcom. I am also in the process of trying to get my 90-day insulin prescription under Medicare Part B. I’ll politely say with no curse words that none of this is going well. I am turning into the “Always-B*tching Blogger” because this stuff is so hard. And it shouldn’t be. I am just trying to do what I did last month and the month before with Dexcom and 3, 6, 9 months ago with Walgreens and insulin. 

I will eventually get out of Dexcom “Processing” limbo and my supplies will be  shipped. Some Medicare recipients have been told that shipments are delayed 7-10 days due to high volume. Long call waits, shipments delays, and moving Call Support to the Philippines have not made Dexcom a popular company in the diabetes online community. ‘Nuff said. And Walgreens will figure out how to get Medicare coverage for my insulin.

At the same time, I like the ring of Always-B*tching Blogger and you can just think of me as ABB!

The Weather:  I have spent winters in Arizona for 15+ years and have never seen snow. That changed last week with 3 inches of the white stuff. Fortunately despite a few downed tree limbs, we had little damage. 

Finally spring has arrived and the Arizona that I know and love is back.

Ground Squirrels:  Although my landscape and flowers survived the snow, I am totally losing the battle with ground squirrels. These horrible creatures are “protected” in Arizona and my exterminator isn’t allowed to poison them. Plantskyd which deters rabbits and deer in Minnesota is impotent. My normally gorgeous March geraniums are decimated. This photo is one day after replanting and an ample dosing of Plantskyd.

The Dog:  All of my readers are kind to read about my dog and her journey through aging and illness. I have come to terms with her limitations and the fact that we only walk half a block twice a day. Otherwise she is happy, eats well, drinks well, poops well, plays fetch with her Bouda giraffe, and wags her tail. Despite me being her caretaker, feeder, medicine dispenser, Bouda thrower, etc., she loves my husband the best and delegates me to #2. Like a teenager, she loves baking in the sun on our back patio.

Animas/Medtronic/Tandem: My Animas pump went out of warranty in late 2016, but I still get emails from Animas and Medtronic about switching to a Medtronic pump system. I am committed to Dexcom and see Tandem and maybe Omnipod as my future. Until Medtronic sensors are reimbursed by Medicare, there is no way that I will take a chance on a CGM that is out-of-pocket. At the same time I have struggled for 2+ years with occlusion alarms on my Tandem X2 and have been back using my Animas Vibe trouble-free for the last 3 months. 

Kinda Whole 30: I have written about Whole 30 and my imperfection at succeeding through 30 days. But I periodically go back on the reset diet and am amazed at how fabulous my blood sugars react to no dairy and no grains. I eat a ton of fruit on this diet and get no spikes. Because I have hosted two dinner parties in the last week, I have once again have strayed from perfect adherence and have had wine. But here is a 24-hour Dexcom tracing that speaks for itself.

Thank-you.  As always, I am grateful for my online diabetes contacts. Keep up the good fight, my friends, and keep in touch. Without you, my diabetes would be really, really hard instead of just really hard. Diabetes social media makes a difference.