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. 

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….

Days in a Month with Diabetes

30 days hath September,

April, June and November.

All the rest have 31.

And February’s great with 28

                                     And Leap Year’s February’s fine with 29.

Medicare rations diabetes supplies on a strict 30-day or 90-day cycle. My Medicare suppliers are even worse and tend to think that months have 35 days and quarters have about 95-100 days.

Unfortunately no one has communicated that to my diabetes which trucks along with a strict 24/7/365 (or 24/7/366 in a Leap year) schedule.

I continue to rejoice that my Dexcom G5 CGM is covered by Medicare, but it has been frustrating that Medicare currently requires Dexcom to send out supplies monthly rather than quarterly. The personnel and shipping costs for Dexcom for this monthly distribution are probably substantial and every month seems to leak a few days between shipments. In 2018 most of my shipments were a couple of days to a week late and over the course of 12 months, I only received 11 Dexcom shipments. My guess is that my experience is reflective of that of most Medicare beneficiaries. That means that Dexcom lost one monthly subscription fee for each of us and that is a lot of money for a small company. I was lucky to come into Medicare with a cushion of CGM supplies and I have been okay with constantly late deliveries. I also know about Spike and xDrip where you can reset G5 transmitters to last longer than the software-mandated death of 90-104 days. But some Medicare users have had to go without their CGM when sensors and particularly transmitters have been delayed. There is sometimes an excuse such as backordered transmitters or insurance verification. This month I placed my order on the designated day and the very nice Dexcom rep offered no excuse when she said it wouldn’t ship for another week.

I have been most impacted by pump supplies. I went on Medicare in April of 2017 and I received my 4 boxes of pump supplies like clockwork. Medicare strictly requires that each infusion set will last 3 days and allows no cushion for painful or failed sites. Or aging skin and tissue which require 2 day sets changes. Or steel cannula sets which mandate a 2 day change. In 2017 my doctor’s letter of medical necessity for 4 boxes instead of 3 was accepted and I got the needed supplies. My first order of 2018 was shorted a box and the supplier was unwilling to work with me to override the restriction. I switched suppliers and seeming the override was fine. But they sent the order 10 days late. In infusion set language, 10 days is half a box of supplies for me. Then 3 months later, they wouldn’t send my order until 92 days had passed. Then the next order was another 10 days late. 

I have recently switched to Tandem TruSteel sets and seem to have better insulin absorption than with my previous VariSoft sets. And guess what! You can move the needle part of the set, reinsert it, and tape it down to get another day or two from the set. After two days, 90% of my TruSteel sites are slightly inflamed. So you go, Grandma!. Pull out the needle and tack it into another location. So far I have had no real infections and fortunately am very pain-sensitive and don’t try to extend puffy sites. But we all know that one ER visit or hospitalization would quickly blast past my Medicare-approved cost of $5.91 per infusion set.

Meanwhile diabetes keeps trucking along.

1, 2, 3, 4…..90 days.

If I did not extend infusion sets and have a stash, I would run out of supplies. 

Medicare teaches you to lie. When you call your supplier to renew your 90-day supply, you can’t have more than a week (or is it 10 days?) worth of pump supplies in your D-tub. I would never in a million years be comfortable being down to 3 or 4 infusion sets before ordering more. With Dexcom the policy seem to be more liberal and I can get 5 sensors and 3 boxes of test strips if I am out of supplies. But even a failed transmitter doesn’t seem to get me better than 3-day shipping. My suppliers have failed me in the past and I don’t trust them to bail me out in an emergency. So I always tell them that I have fewer supplies than I really have. Because….

Diabetes keeps trucking along.

I have never sold excess supplies and I no longer share excess supplies. But as someone who has lived with Type 1 diabetes for 42 years, I know that I cannot risk being without insulin for 5 minutes or pump supplies for 5 hours or CGM supplies for 5 days. 

One of my Medicare diabetes online friends once told me that every 90 days she feels as though she is recreating the wheel and resetting her diabetes life. With Dexcom it is every 30 days.

I get it now. That’s the game. And that is the game I play.

Moving into 2019: Diabetes and Not Diabetes

We’re ten days into 2019 and life is the same. But not really the same. Oh yeah, it’s probably the same but it’s nice to use the reset of a new year to check out where I am. With things related to diabetes. And things not related to diabetes.

Geographical change:

I abandon the cold of Minnesota every year after Christmas and snowbird my way to Arizona for 4 months. I have been here about two weeks and we are finally warming up after super cold temperatures and snow in the mountains. We have had a couple of rainy days but mostly the sun shines and my spirits soar. I don’t have to worry about slipping on the Minnesota ice.

Diabetes Stuff:

In early December I wrote about going back to my Animas Vibe pump due to occlusion alarms and other frustrations with my Tandem X2 pump. I went back to the X2 for my endocrinologist appointment later in December because I want my medical records to show nothing other than Tandem use. Medicare Part B insulin and pump supplies require the serial number of my pump and I don’t want to risk coverage nor do I want to put my endocrinologist in a situation of having to fudge on what pump I am using. Then because I was traveling to Arizona, I wanted to wear my in-warranty pump so that if the second pump in my suitcase was lost because of shenanigans while I was being groped by TSA, it would be the old “worthless” pump.

But very quickly in Arizona, I got frustrated again with occlusion alarms on my Tandem pump. So I ditched it again and am back to my Animas pump. I called Tandem to report that I was having occlusion alarms and indicated that I just wanted that on my record not a pump replacement. Since I have had occlusion alarms with three different Tandem pumps, I am not optimistic that a new pump will make a difference and I don’t want to deal with it until I have access to the Dexcom G6 and Basal IQ. For Medicare users, that is expected to start happening in April. Until then I will continue with my workhorse Animas pump that delivers insulin and never has occlusion alarms or other intrusions into my life. As always, please note that I am a huge fan of Tandem and do not regret my t:slim X2 purchase. I just regret that I am one of the unfortunate souls who has occlusion alarms and struggles to succeed with this pump.

Diabetes, Arthritis, and Lifestyle:

I have previously mentioned that I am giving up extreme hikes of 12+ miles in the mountains to preserve the remaining cartilage in my painful arthritic feet. I don’t want to have foot surgery especially as I am finding that my August hand surgery solved some of my problems but not all of my problems. I have no confidence that foot surgery will turn me into a 25 year old athlete again….

I am finding new activities and am attending fitness classes three times a week. Plus I ride my bike to everything in my community and never use my car or golf cart. So far I have been keeping in touch with my hiking friends and right now for me the social connection is far more important than the athletic connection.

Kinda Broken:

A lot of things in my life kinda work but are kinda broken. This is definitely a #1stWorldProblem section. 

The remote for our main TV does not turn on the tuner or cable box and we must do that manually. If you forget, button pushing randomly turns on some devices and turns off others. When the TV dies, it will require an expensive redo. Until then, we just figure it out and make it work.

My husband broke the battery compartment door of my golf laser gun. To get my distance on the golf course, I push up on the bottom of the gun, push the button, and hope to get the distance. Yeah, it works but is annoying and one more challenge for my arthritic hands. But I don’t play a huge amount of golf and don’t want to invest in a new laser gun. When this one works. Sorta.

The screen lock button on my iPad is stuck. I should get it fixed but right now I added an Accessibility Feature button that allows me to turn off the screen with a few clicks. Annoying but a cheap fix.

The garage door manual close button doesn’t work due to a lightening strike last year. So I have to enter the code which works fine but is an extra kinda-broke step. 

My August hand surgery fixed one of the bad joints in my left hand. But it didn’t fix the joint that hurts when I play golf. And the bad elbow wasn’t even addressed. So a hand brace and an elbow strap make golf possible.

Totally Broken but Fixed:

When I flew into Arizona in late December and picked up my husband’s car at the airport lot, the car screamed brake failure and stranded me in a rocky industrial lot north of the airport. AAA, a loaner car, and an eventual warranty repair got me home in a few hours and the car back in our garage a few days later. Thanks heavens that the brakes failed before I got to the highway.

We have dealt with a quirky HP printer for several years where it always needs to have its network settings re-entered weekly just to print a crossword puzzle. Finally it got an unfixable error message and we now have a new Epson printer that promises to be more reliable. I hope. New printer=$90. Ink for new printer=$70. Argh!

Still Broken:

Yeah. My pancreas is still broken. But what’s new???

Abby the Black Lab is doing okay but is in pain due to arthritis and other health issues. She started laser treatments today and the prognosis is good for easing her symptoms. She is still happy and eats and drinks well. And she looks super cool in the doggie sunglasses required during her laser treatments. But she is an old dog and age is not fixable….

*******

Happy New Year to all of my readers and may 2019 be a good year for you and your family.