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.

 

Two Tandem Infusion Set Tricks

I confess that I am not a total rule follower with my Tandem pump. But I think that some of the “not In the manual” things I do make my pumping experience better. Today I will share two Tandem infusion set hacks with you.

If you don’t use TruSteel or VariSoft infusion sets, you might want to quit reading now.

Pain with TruSteel Sets

Within the last year I have become a convert to metal infusion sets and with Tandem that is TruSteel. I find that insulin absorbs immediately after insertion unlike other infusion sets where I had to bolus or use a temp basal to prevent post-insertion highs. And I don’t get site failures. Except…. Sometimes TruSteels just hurt because it really is just like sticking a thumbtack into your body.

When discussions about pain come up in the Tandem t:slim Pump group on Facebook, many people say that these sets never hurt and lots of parents report that their children use them pain free. So am I a wimp? I guess so because I occasionally get lots of pain and pull sets prematurely or limit the locations where I use them. And for me a painful site gets inflamed quickly.

Last week in a Facebook discussion when I shared my wish that Tandem would make a metal set with a really short needle, my online friend “Lauren” suggested putting a small piece of gauze underneath the set to seemingly make the needle shorter. Wow! I always think I know all of the diabetes hacks, but that was something I had never thought of. At the same time I am lazy and couldn’t imagine cutting up tiny pieces of gauze. Brainstorm. How about a small round Bandaid that has a built-in gauze pad in the middle? 

I am on my 4th TruSteel with a triple layer of products and the results are incredibly good. I have no idea what the exact thickness of the Bandaid is, but it is enough that I have had zero pain even with rolling over and sleeping with a set on my hip. I never could do that before. Every location I have used has been pain free and the procedure is quite easy. Stick a round Bandaid on the intended site, insert the TruSteel needle through the central gauze pad, and then put a small rectangle of Opsite Flexifix or Tegaderm on top. (I have always used over-tape on the needle site because it prevents me from accidentally ripping off the set by catching my thumb in the tubing.)

Although I still think that Tandem should have a TruSteel set with a 4mm needle, this hack is currently a great work-around for me.

Using Animas and Medtronic sets with Tandem

The following hack only relates to TruSteel and VariSoft sets. It is possible that something similar can be done with other Tandem sets but I have never used those sets.

Interim Blurb:  I’ll preface the discussion by reminding you that tubing for insulin pumps has two ends. One end connects to the pump reservoir and is unique for each brand of pump. Tandem tubing will not connect to Medtronic or Animas reservoirs. Nor will Medtronic or Animas tubing connect to Tandem cartridges. 

BUT…. The other end of the tubing that connects to the infusion site on your body is the same for Tandem, Medtronic, and Animas. And not only is it the same for each pump brand, it is the same for TruSteel and VariSoft sets and the Medtronic/Animas equivalents of those sets. So if I use Tandem tubing attached to my Tandem pump cartridge, I can hook the other end of the tubing onto a TruSteel, VariSoft, Medtronic Silhouette, Medtronic Sure-T, Animas Comfort, or Animas Contact Detach set.

Why is this important?

Many of us struggle to get a sufficient number of infusion sets and that has been my experience on Medicare. But I have a diabetes friend who at one point had lots of extra Medtronic Silhouette sets that he wanted to get rid of. I was happy to help him out. 

Interim Blurb:  I use my pump cartridges and tubing for longer than my infusion sets and often change them independently of each other. I have done this throughout my entire pumping career with Medtronic, Animas, and now Tandem. My old lady skin and tissue require changing infusion sites every two days but it would be expensive and time consuming to change my cartridge and tubing that frequently. Some people consider that heresy but it has always worked well for me.

So how do I use my friend’s Silhouette sets? When I start a new cartridge on my t:slim, I use a Tandem infusion set (VariSoft or TruSteel) and the Tandem tubing that comes with that set. Two days later when I change my infusion set, I have the flexibility to use a VariSoft, a TruSteel, a Medtronic Silhouette or Sure-T, or an Animas Comfort or Contact Detach. And WHY is that? Because the end of the tubing that connects to the pump site on my body is identical for these six types of sets. The blue circles in the illustration below show that the site connectors on Tandem, Medtronic, and Animas are identical.

You may wonder why I keep mentioning Animas since these pumps and supplies are no longer sold in the US. But there are still people occasionally posting on social media that they have Animas supplies to donate. I was the beneficiary of a huge number of boxes of Animas Contact infusion sets that a local woman wanted to dispose of. I explained that she could use them with her daughter’s Medtronic pump with a tubing substitution but she wasn’t interested. These extra infusion sets are providing me with years of protection from Medicare rationing of supplies.

Another reason to understand how infusion sets can be substituted from brand to brand is that if you’re out of town and forget to bring extra Tandem infusion sets, maybe there is someone locally with a Medtronic Silhouette or Sure-T or even some Animas sets.

Interim Blurb: When you change infusion sets more often than cartridges and tubing, you end up accumulating lots of extra tubing. I save most of it because it gives me flexibility. I still have my Animas Vibe pump and could use Tandem or Medtronic sets with it because I have baggies full of Animas tubing. Similarly if I switch to Medtronic in the future, I could use Tandem or Animas sets because I have lots of Medtronic tubing.

I think that this hack will be confusing for many people. But if you understand what I am saying and use either VariSoft or TruSteel sets, you may find it helpful.

Now back to reading the Tandem user manual because I will be starting Basal IQ in a few weeks….

Medicare and Dexcom G6: Yes!?!

There is a lot of discussion on social media this week about Dexcom G6 finally being available for Medicare recipients. Most of it is personal testimony along with a few links and guesses of what the story is. But some seniors are definitely ordering G6 systems and that is great news. I have heard from two sources that Dexcom will be sending current Medicare G5 users “A LETTER.” But now that the cat’s out of the bag, many of us are not patiently waiting for instructions from Dexcom.

The most information about G6 Medicare availability is on the Dexcom Provider website. This link details the steps a physician should go through to prescribe a G6 for Medicare patients:

https://provider.dexcom.com/support/medicare-coverage-and-prescribing-information

Interestingly Walgreen’s is being mentioned as the go-to supplier. Walgreen’s is licensed to dispense Part B DME for Medicare because that is how they have for many years provided test strips, insulin for pumps, and other DME products. Patients are also allowed to use other approved DME suppliers to get their Dexcom G6 and I have chosen to use Solara Medical which provides my pump supplies. Although I am mostly a satisfied Walgreen’s customer, they do periodically bill my Part B insulin to my Part D prescription plan and I don’t want to give them the chance to do the same with my CGM supplies. Hopefully the Dexcom-Walgreen’s partnership will be successful but I suspect it will take a while to work seamlessly.

Here are a couple more helpful links:

Medicare FAQ’s:  https://provider.dexcom.com/faqs-categories/medicare

DME suppliers other than Walgreens:  https://www.dexcom.com/medicare-coverage

I have no idea what the Dexcom letter will say or if there really is one. I do know that upgrade eligibility will require that it be at least 90 days since since the most recent G5 transmitter was shipped. I was somewhat concerned by the following statement on the provider FAQ’s webpage addressing existing Medicare patients: “New Medicare patients will have access to Dexcom G6 immediately, and we will begin upgrading existing Dexcom G5 Medicare patients soon.”

Since I have lived with Dexcom’s definitions of “soon” and “next quarter” for over a year, I was not willing to wait to see what happens. I called Solara this morning and a sales specialist placed my order. Solara will contact my endocrinologist for a prescription and the required chart notes. My last G5 transmitter shipped on August 6 and my G6 system should be eligible to be shipped on November 5. My G5 receiver is the old style and not able to be updated to G6. Therefore my initial G6 shipment will include a touchscreen receiver. Medicare regulations still require that a receiver be used occasionally to view Dexcom data although there is currently no enforcement of the policy. I think it is a “Don’t ask, Don’t tell” situation and a reflection of the fact that CMS has no interest in diving into the black hole of trying to update Medicare DME policies. Because Dexcom Clarity does reflect what devices I use to collect my CGM data, I try to use the receiver a day or two every couple of months. That seems “occasional” enough to me….

I am mostly happy with my Dexcom G5. But I use a Tandem pump and have been very frustrated at my inability to access Basal IQ because I don’t have a Dexcom G6. I truly believe that Basal IQ will improve my safety and sleep as it shuts off insulin delivery in response to predicted lows. Whether I use Basal IQ all of the time or just at night will be determined in the next couple of months. 

Nothing about this blogpost is official although it shares some legitimate facts through the Dexcom provider links. Other than that, it is what I have learned on Facebook from other Medicare Dex users and by talking with a sales rep at Solara Medical. Until a Dexcom G6 system arrives on my front porch, I will only hope that the road that I have chosen to G6 is a good one. If any of my readers has more information, opinions, or G6 experience, please share in the comments.

But I am smiling today because I was worried that today might never come….

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….

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.