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. 

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….

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

A Tandem Vacation

Is it back to the future or forward to the past? 

I’m not quite sure.

What I do know is that this month is my two-year anniversary using a Tandem insulin pump and I just went back to using my Animas Vibe. I am hoping that an older, simpler pump will ease my navigation through the current dark clouds of my Type 1 diabetes. I wrote a blogpost in late November about my diabetes life as a country music ballad and things haven’t changed much. My elderly dog is recovering well from pneumonia but struggling to move around due to arthritis and an injured foot. The cold and cloudiness of late fall continue to trap me in gloom and icy streets prevent neighborhood walks. I have been in an extended funk where my diabetes doesn’t follow the expectations of “If I do A, then B will happen.” A lot of time I do A and seemingly nothing happens. Is it the pump? Is it the insulin? Is it my behavior? Is it one of Diatribe’s 42 factors that can impact blood sugar? I am burdened by diabetes technology that doesn’t give me sufficient control over intrusive beeps and sirens.

Many of you know that when I get frustrated with my D-Life, I try new tools with the conviction that there is a solution to BG frustrations. I have added Lantus as an adjunct to pump therapy with the Untethered Regimen. I have adopted low carb diets and reset my life with a month of Whole 30. I have changed types of insulin and models of infusion sets. Wil DuBois of Diabetes Mine wrote an article this week titled “To Pump or Not to Pump with Diabetes?” and shared his feelings about the benefits of changing up your D-regimen: 

“I find that any time I change from one tool to another, I do better. If I changed every two months, I’d probably stay in control. I think it’s because change makes you focus. That, or diabetes is an intelligent alien parasite that can be caught off-guard only for a short time.”

But back to the subject of this post. I am using my Animas Vibe in place of my Tandem t:slim X2. I have always relied on the Vibe as a backup pump so it is not a bad idea to road test it after two years in the closet. I figured that I would quickly miss the X2 but have instead discovered that I really like this old pump.

I was concerned that going back to scrolling for carb and BG numbers would be horrible but in many ways it is easier than using a touchscreen and navigating through multiple “Are you sure?” screens. I really appreciate the immediate bolus delivery of the Vibe. With Animas, I program the bolus, it whirrs, and delivers insulin before I can get the pump back in my pocket. With Tandem, I program the bolus, it delays for a while, micro-boluses, and eventually finishes with a confirmatory vibrate a minute or two or three later. The Animas clip is a delight with its easy attachment and actually holds the pump securely on my waistband. Temporary basals are simple to enter and a temp basal of zero does not result in an annoying warning alert several minutes later. The Combo Bolus function remembers my last setting rather than requiring a recreation of the split and duration each time. My arthritic hands are having an easier time with the Vibe buttons than with the increasingly stiff T-button on my X2.

There are lots of wonderful things about Tandem pumps but I have been one of the unlucky people who gets occlusion alarms. Most users don’t get them. The vast majority of the alarms are false. I just hit “Resume Insulin” and go on my way. Lately I have had a couple of alarms that actually required replacement of the infusion set and/or cartridge. I have done extensive troubleshooting with Tandem over the years and am on my 4th pump. Only one of those pumps did not give me occlusion alarms and it unfortunately had a defective T-button. I never had occlusions in 12 years of pumping with Medtronic and Animas.

I am tired of troubleshooting. I sometimes experience one or two occlusion alarms a week and then go a while without them. But after two years of alarms, I think about occlusions almost every time I bolus. I average 8-9 boluses per day and that is a lot of thinking about occlusions. I am tired of holding the pump with the tubing extended post-bolus to prevent occlusions. I am tired of feeling guilty for stubbornly refusing to use the Tandem case and for not changing my cartridge every 3 days. I have a low TDD of insulin and an every 3-day cartridge change results in wasting as much insulin as I use. I do replace my infusion set every 2 days.

Longterm I know that I will eventually be back to Tandem. I am probably just being a pouty and whiny problem child. Despite fewer alarms and intrusions into my life, the Vibe has not cured my diabetes but I am doing better. I am committed to Dexcom and thus don’t envision switching back to Medtronic. I am super excited about getting access to the Dexcom G6 and Basal IQ; as someone on Medicare, that should happen in the spring. Hopefully the benefits of Basal IQ and eventually Control IQ will outweigh the insulin delivery problems. An Animas pump is not a longterm option. Johnson & Johnson abandoned the pump market and there is no customer support for my out-of-warranty Vibe. If it quits working or the case breaks, I am done. Fortunately I have a lot of supplies and was recently given enough reservoirs to last for several years. I can use Tandem infusion sets by substituting the t:lock tubing with luer lock tubing.

I think highly of Tandem and have always had good customer service. Until starting to use the t:slim X2, I was never a problem child with diabetes tech and continue to believe that there is something wrong with an insulin pump that frequently quits delivering insulin. Is it the design of the pump? Is it my low insulin use? Is it random bad luck? Am I at fault? I don’t know and am at a point as Gone with the Wind’s Rhett Butler would say: “Frankly, my dear, I don’t give a damn.”

Diabetes Country Ballad: One of THOSE Posts

Diabetes Awareness Month is not over so I guess I am allowed to  post a blood and gore photo. The bleeding on my belly was much worse than the tissue shows, so just envision 10x the blood of the photo. Oh let’s just be outrageous and imagine 100x the blood! It is still November and I can b*tch about diabetes and the frustrations of dealing with my D-tech. I can be strong on the outside and be sad inside. It is my 42nd November with diabetes and I can do whatever I darn well please.

Today was a weird day and it ended up being a perfect 12-hour basal test. 

My dog Abby had surgery two months ago for a condition called “larangeal paralysis” for which the poster child is elderly Labrador retrievers. The biggest risk of this surgery is aspiration pneumonia. I knew that Abby was sick yesterday and early this morning her lethargy and 103.3 temperature sent us to the emergency vet. She is currently in doggie intensive care inside an oxygen tent with an IV for fluids and antibiotics. We have chosen to treat this episode of pneumonia knowing that we won’t treat again. 

But I didn’t get breakfast.

Then I had previously promised to take care of the grandchildren today. I’m not quite sure why the older ones didn’t have school, but they didn’t. I could have canceled, but since Abby was in the dog hospital, I picked up the kids and we came to my house for Christmas crafts, game time, and doing our best to keep 18-month year old Natalie off of the stairs. I fed the kids lunch but didn’t get around to eating myself.

No lunch.

I drove the kids home mid-afternoon and then stopped at Costco on the way home. I got home at about 5:00 and my BG was at close to 100 after starting the day at 80-ish. Over the next 2 hours, nothing much happened. So a perfect basal test. A 20-point rise over 12 hours is testament to great basal rates and I was kinda feelin’ okay about that.

But then.

I bolused 32g carbs for the Whole 30 stuffed pepper I was having for dinner. The hubby hates dinners like this but he is out of town. 

Bolus. Tandem pump alarms for an occlusion alarm. Ugh! My TruSteel site was a little sore this afternoon so I changed out the site but not the tubing or cartridge. Tried the bolus again. Nope! Another occlusion alarm. 

Although I am a Tandem “doesn’t follow the rules” girl, I changed out both the cartridge and the infusion set. I tried to pull the 100+ units of insulin from the previous cartridge but it was mostly bubbles and I just tossed it. When I pulled out the TruSteel set, I got gobs of blood. My bathroom countertop shows the riffraff of my diabetes debris.

New infusion set, new cartridge, and new insulin. I bolused again for the stuffed pepper. 

Last time I looked at my CGM, it was 139 with a slanted arrow up. 

Remember my BG was about 100 at 6:23pm. 

So my daytime basals are good as my BG only rose 20 points over 12 hours. But my diabetes tech failed me: both the infusion site and the finicky occlusion alarms of my Tandem pump. I have double-bolused for dinner and my BG is still rising. Well, actually I tripled or quadrupled bolused but the pump alarmed on the first attempts.

It is now after 8:00pm and my BG is still rising. I am hungry for dinner but won’t eat until I am convinced that my infusion site, pump, and insulin are functioning properly.

It is now 9:00pm and the numbers are not going down.

Sometimes the hardest part of diabetes is that when you do it right, it does you wrong. 

A country music ballad of…

Betrayal, Frustration, and Sadness.

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Tuesday morning note: Abby is home and doing well.