Brittle Diabetes, Hand Surgery, and the Dog

My blog has been languishing in summer doldrums and it is time to check in or check out. Lest you think that the three subjects in the title are connected, they’re not—except kinda sorta.

Brittle Diabetes

Looking for information to update a health history document, I recently reviewed my medical record from a previous internist. I thought that his notes from my first visit were interesting. What jumped out was “Brittle DM” at the top of the page. A few weeks ago there was a Facebook discussion about the word “brittle’ as a descriptor of diabetes. Most people considered it to be an outdated and inaccurate term that should be trashed. I am a little more open-minded about the subject and believe that there is a small subset of people with Type 1 diabetes whose disease is much more difficult to manage than that of most of us. Diabetes Forecast had an article in 2014 that addressed the brittle diabetes debate and quoted a Brazilian endocrinologist who described brittle diabetes as “glucose fluctuation so severe that a person cannot have a normal life.”

I am not writing about brittle DM in order to start a terminology debate, but rather to illustrate that in the past many of us with Type 1 were labeled brittle and labile. My internist was not ignorant about diabetes in 2002 and other notes mention Type 1. He actually understood clearly that my diabetes was different than that of most of his other patients. As far as I know he had only one other Type 1 patient and he often asked about my technology, especially my CGM in later years, to learn more to help this other patient. 

Other comments from this visit showed that I was still using NPH despite having previously been under the care of a renowned endocrinologist. The new doctor immediately transitioned me to Lantus which resulted in the biggest improvement ever in my diabetes care. No reputable doctor could read this chart note without thinking Type 1 diabetes as I had frozen shoulder, dealt with hypoglycemia, and took Synthroid for the common comorbidity of hypothyroidism.

So in the old days, I had brittle diabetes and lots of the baggage that goes along with it. In 2018 I have regular hard-to-manage pain-in-the-neck Type 1 diabetes  and lots of the comorbidity baggage. 

Hand Surgery

Many of you know that I had hand surgery in mid-August for the carpometacarpal thumb joint of my left hand. Arthritis and bone spurs had resulted in enough pain that it was time to get it fixed. My rheumatologist assured me that this is one of the most successful joint surgeries and I hope that is the case. I am recovering as expected and trying to curb my impatience at not being good-as-new yet. I am still wearing a brace and dutifully doing the assigned exercises 3 times a day. I am back to spinning classes for exercise because I can do it mostly one-handed. My body and soul miss yoga but know that I can’t put enough weight on the hand to participate safely. I am on the mend and have at least recovered enough to type two-handed. BTW arthritis in this joint is one of the many gifts that post-menopausal women receive more often than other people….

The Dog

In May I shared that 12-year old Abby the Black Lab was diagnosed with chronic bronchitis. Despite using an inhaler all summer, her breathing has gotten worse and it has been determined that she has laryngeal paralysis, or more specifically GOLPP. The only treatment at her stage of the disease is surgery and I always swore that I wouldn’t subject a 12-year old dog to surgery. But Abby is still active, happy, eating and drinking well and with the vet’s advice, we have determined that euthanasia isn’t the ‘right” choice at this time. She is having surgery next Tuesday with a specialist in “Lar Par” (vet lingo). I hope we have made the right choice because Abby has always been a much-loved and perfect dog. Abby used to write posts for Test Guess and Go and this is my favorite.

The Intertwined Relationship?

Exercise is a cornerstone of my diabetes management. Hand surgery, as well as foot arthritis, has limited my exercise this summer and I am unable to do things like mow the yard and walk the golf course. Although I am doing intense studio cycling classes, the rest of my day is fairly inactive. Abby is not allowed to go on walks until she has recovered from surgery and that is another unfortunate reduction in my activity level. Diabetes does not like that and I keep bumping up the insulin and periodically rage bolusing. It doesn’t help that I have a recently replaced insulin pump and wonder if I just need different settings than the old pump. Or whether it is this or that or who knows what. My diabetes may not be brittle, but it sure is hard to figure out sometimes. So yes, everything is related: diabetes, arthritis surgery, and the dog.

Thank-you Tandem: A Replacement Pump

I recently wrote two blogposts (here and here) about false occlusion alarms on my Tandem t:slim X2 pump. I was not shy about sharing my frustrations and I want to update my story with the fingers-crossed!!! resolution of my problem.

I have always had good customer service from Tandem. Despite the long wait times on hold reported by some people on Facebook, I have never had to wait more than a couple of minutes. I have never yelled, cried, or been rude to Tandem tech reps, but lately I have worried that they might start to label me as a “customer from h*ll” as I repeatedly called to report more occlusion alarms.

The problem with false occlusion alarms is that when the pump is not shrieking about the stoppage of insulin, it works fine. Thus my pump passed all the tests that that Tandem support had me go through and in the end the in-house reps did not have the authority to authorize a replacement pump. The issue was referred to my local trainer. 

When my first X2 had weekly occlusion alarms for many months, I met with this trainer to review my technique on reservoir fills and infusion sets. We have a good relationship and when she heard that I had experienced 5 occlusion alarms in 9 days, she arranged for an immediate X2 replacement. The new pump arrived within 24 hours and I have been happily carrying the case-less pump in my pocket. So far there have been no occlusion alarms and I am cautiously optimistic that my problem is solved.

Although I am happy with the new pump, I don’t seem to be able to stay away from Velcro. Maybe it is an addiction…. Or maybe it is just the inability to accept diabetes tech when it doesn’t quite fit into my life. Soon I will be heading to South Carolina for a few days in the ocean and pool with grandkids and family. After that I am having hand surgery. Both occasions require a clip on the pump. 

The Tandem case with a clip would work for the surgery but not for the beach. I want a clip on my pump to attach it to the pants portion of my tankini swimsuit and the case would work for that. But when I am in the water, I want to use my Aquapac pump case (actually a Radio Microphone case) purchased many years ago as a waterproof case for my Medtronic pumps. It is an expensive and somewhat bulky solution that allows me to wear my pump strapped around my waist with guaranteed water protection. The Tandem case is too large to fit into the Aquapac. 

So I am back to a Nite ize Hip clip applied directly to my pump. Rather than using the two-sided tape that comes with the clips, I use Scotch Outdoor Mounting Tape because it is equally strong but much easier to remove. Unfortunately the Nite Ize clip is only marginally better than the Tandem clip when it comes to falling off my waistband and I applied Velcro hook pieces to both sides of the clip interior to provide some grip. People on Facebook have reported using heat shrink on the Tandem clip but I am not sure how that would work with the different design of the Nite Ize clip. And anyway, Velcro is what I know and Velcro is what I have in my junk drawer.

Today I have a new pump that seems to accept living in my pocket without a case. I have a Nite Ize clip applied directly to the pump which allows me to clip the pump to my swimsuit but is small enough to fit into various pockets and the Aquapac pump case. The clip is attached to my pump with a strong tape that is easy to remove when I decide to go clip-less or use the case instead. 

Pump. Clip. Velcro. No occlusions. That just about sums it up.

Tandem Occlusion Alarms: Crying Uncle

Last week I published a blogpost addressing my annoyance with false occlusion alarms on my Tandem X2 insulin pump. Periodically Tandem techs have advised me that using a case might eliminate the alarms and that has actually been my experience. But I hate the case which makes the pump heavy and bulky instead of slim and sleek. Thinking that maybe adding something to the pump to protect the vent holes might mimic the case, I experimented with attaching a black plastic ring to the back of the pump. 

A few hours after publishing the blogpost, I added an update:

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t???😩😩😩

In my typical stubborn fashion, I put the case-less and clip-less pump back in my pocket. Fast forward to Saturday where I had another occlusion alarm—the 5th alarm in 9 days. (Please note that these alarms stop insulin delivery so they are a serious problem.) Not only did the blogpost jinx me, one of my Facebook friends who never gets occlusions got an alarm on her X2. Then another friend got an occlusion on his Medtronic pump. Occlusions are spreading like wildfire through the diabetes pumping community!

Maybe the wildfire remark is an overreach, but I cried uncle and put my pump in a t:case vowing to wear it clipped to my waistband. Unfortunately I had previously broken my black case  and was stuck using the pink case which I don’t like. Boy, do I sound like someone with a severe case of #1stWorldPrivilege! In my defense, Amy Tenderich of Diabetes Mine figured out a long time ago that design is important for diabetes devices and her 2007 “Open Letter to Steve Jobs” went viral.

The 24 hours that I wore the pink case reinforced now much I hate it. Both the shade of pink and the amount of black showing through the cutouts bug me. I decided to purchase a new case and was disappointed that black is out of stock in the Tandem Online Store and at Amazon. So it was back to the drawing board. I devised a minor engineering solution to secure the Tandem clip to the broken case by using Velcro in place of the missing plastic anchor strip. So far it is working and my fingers are crossed that the fix will be durable. The Velcro does double duty by adding “grab” to help prevent the pump from sliding off my waistband, an unfortunate common t:case problem. 

So it has been another-day another-adjustment to diabetes tech. If I continue to get occlusion alarms on this pump, I will now be totally justified in battling for a replacement pump. If a case solves the alarm problem, I should be happy. But I will still be frustrated. Frustrated that Tandem promotes the small size of the X2 with photos of the case-less pump. Frustrated that many people use the t:slim successfully without a case and I can’t. And maybe most importantly, frustrated that I still don’t understand why.

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7/30/18 Afternoon: I need to stop publishing blogposts because once again my fix that was successful for two days FAILED. The clip slipped out of place and the pump fell off my waist mid-morning. Ugh! My latest solution to prevent going back to the pink case is to attach a Nite Ize clip to the back of the case using strong outdoor adhesive tape. There are various pieces of Velcro on the inside of the clip to make sure the pump stays put. Although I do not miss my Animas pumps in many ways, I do miss the clip that easily attached to the pump and held it tightly on my waist.

Tandem Occlusion Alarms: An Engineering Experiment

I began using the Tandem t:slim X2 insulin pump in December 2016. Since then I don’t think that I have written a blogpost about the pump without mentioning false occlusion alarms. In my first review of the pump, I wrote:

“I have used the Tandem t:slim X2 for almost 10 weeks. In that time I have had 9 occlusion alarms resulting in an immediate stoppage of insulin delivery. The first couple of times I panicked at the shrieking pump alarm fearing that something was actually wrong. Nope. Not once has there been a problem that did not disappear by working my way through the menu screens and pressing “Resume Insulin.” The vast majority of these alarms have been while delivering meal boluses, but not all.”

Periodically I have thought that I have solved the problem and interestingly I have had completely different experiences with my three X2 pumps. Pump #1 got weekly occlusion alarms during the first four months of use. I eliminated the alarms by either using a case or wearing the pump on my waistband with a Nite Ize Clip. But I hated those solutions and eventually went back to carrying my case-less and clip-less pump in my pocket. For no discernible reason the occlusion problem didn’t reoccur and I only had two or three occlusion alarms in the next 11 months. In February 2018 Pump #1 was replaced due to a battery failure. I only used Pump #2 for a month due to a defective T-button. But in that time I did not have a single occlusion alarm.   

Then I got Pump #3 and immediately returned to weekly occlusion alarms and sometimes two or three a week. I figured these alarms were the price of refusing to use a case or clip and I just lived with them. Then a couple of 2-alarm days convinced me that enough is enough. I dug the case out of my supply box. The pump became heavy and large with the case and would no longer would easily fit into the waistband pockets of my workout pants and pajamas. Total PITA. But I didn’t get occlusion alarms. Hating the case, I went back to the Nite Ize clip with the pump on my waistband. And ugh, I started getting occlusion alarms again.

So now my question became: Why does the case eliminate false occlusion alarms? A Tandem tech rep once told me that the case eliminated temperature fluctuations that occurred when I took the pump out of my pocket to enter a bolus. Seemed kind of far-fetched and if that was the case, why doesn’t everyone who carries the pump in their pocket get occlusion alarms? And when I was wearing the pump on my waistband with a clip, why did I get occlusion alarms because there was no temperature change?

My current hope is that the case works because the cut-out over the pump vent holes stops the vents from being blocked during insulin delivery. How could I replicate that without using a case? On Tuesday I went to the nearby Ace Hardware and wandered down the aisle with screws, washers, nuts, springs, etc. I bought a couple of gizmos including black plastic rings with a hole large enough to protect the 6 vent holes on the back of the pump. (It should be mentioned here that there are constant discussions on Facebook about the purpose of these tiny holes and some people swear that they are only for sound. A Tandem tech rep recently told me that the holes are dual-purpose and function both as vents and speaker holes. So that’s what I am choosing to believe.) I also bought 2-sided adhesive strips. 

Working in my kitchen laboratory, I used a hole puncher to cut a perfect-sized hole in the adhesive and then used scissors for the outer circle. Carefully I attached the ring to the pump. Voila! (It wasn’t quite that simple so if my experiment is a success, I will share more detailed instructions.)

It will take a week or two to see if this MacGyver fix works. I started a new cartridge yesterday and I rarely get occlusion alarms until the cartridge measure 80-120 units. If I make it a week without an occlusion alarm, I will have to see what happens with my next cartridge. And then another. 

Diabetes. A science experiment that sometimes requires engineering solutions.

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t??? 😩😩😩

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Other Comments: I truly believe that false occlusion alarms are related to a design flaw in Tandem pumps. I have so many questions. What percentage of Tandem pumpers experience these alarms? It is hard to tell because social media only attracts those having the problem. Are there common characteristics for those of us getting the alarms such as low TDD of insulin and small boluses? Or is it that certain pumps have overly sensitive occlusion sensors? I could go on and on with questions.

At the same time I want Tandem to succeed. I like almost everything about my t:slim X2 and I appreciate the innovation and good customer service that comes from this company.  There are few pump choices these days and my being on Medicare reduces that number even farther. My primary D-tech loyalty is to Dexcom as my CGM and I am unlikely to return to Medtronic although I was previously happy with my Medtronic pumps. At this time Omnipods are not a good financial option for many of us on Medicare and I have always been fine with a tubed pump. I am intrigued by Bigfoot Biomedical using the Freestyle Libre and keep my fingers crossed that it will be a future option for me. 

I do not follow all of the Tandem rules. Because of my low TDD of insulin, I refuse to change my cartridge every 3 days and throw away more insulin than I use. I change it about once a week while replacing my infusion sets every two days. This was how I operated on Medtronic and Animas and it works for me. With my first X2 I tried changing the cartridge every 3 days a few times and still got occlusion alarms.

I have always had superb customer service from Tandem. Although I am continually frustrated by false occlusion alarms, I do not regret my choice of the Tandem t:slim X2. If I had to choose a new pump today, I would probably choose the X2 again.

But false occlusion alarms are a problem.

*****   Relevant Links   *****

A Review of the Tandem t:slim X2

A 5-month Review of the Tandem t:slim X2

Tandem t:slim X2 and Dexcom G5: It Takes Flexibility

Joining the YMCA: Celebrating Seniors 

A while back I wrote about how arthritis was messing with my life. I complained about sore feet and sore hands. If I had written the post at 2:00AM I might have described sore feet, sore hands, sore back, sore hips, and a sore soul. Despite all of that, I feel okay most of the time. But I am not stupid and know that I need to make lifestyle changes to help reduce joint pain. 

As someone who has lived with Type 1 diabetes for 41 years, I have gotten used to the idea that more than doctors and pills, I am the one in charge of my health. I make the conscious decision to monitor my blood sugar, eat reasonably well, and optimize my insulin regimen. But as I look at the last 4 decades, I strongly believe that I am healthy today because of exercise: tennis, golf, hiking, dog walking, step classes. Unfortunately I am finding that arthritis demands that I no longer hike 12 miles in the Arizona mountains or walk 6 miles on my hilly Minnesota golf course. Weight lifting benefits my biceps but my hands suffer. Planks and push-ups strengthen my core, but my elbows and shoulders rebel. Almost everything bothers my feet.

One of the benefits of my Medicare supplement plan is Silver & Fit where I can join a health club for free. In 2017 I selected the nearby Lifetime Fitness and enjoyed cardio, strength, and cycling classes. Unfortunately this spring I began to realize that despite trying to modify exercises to my capabilities, these classes were too taxing on my joints.

Thanks to a local diabetes friend, I was persuaded to check out the Southdale YMCA. She has belonged there for years and calls it her “home away from home.” She mailed me a copy of the long list of fitness and pool classes, some designed for seniors and others targeted for exercisers of various ages and fitness levels. After being faced with the possibility of both foot and hand surgery, I determined that it was time to check out the Y.

I stopped by one rainy morning in May and was immediately welcomed and taken on a tour. With little hesitation I joined on the spot. Fate determined that my free orientation session was with a trainer who happens to have a sister with Type 1 diabetes! We talked about exercise and low blood sugar and she showed me the stash of glucose tabs in the file cabinet at the fitness desk.

The senior exercise classes are organized under an umbrella of ForeverWell. There are three activity tiers: Just Getting Started, Already Active, and Exercising Regularly. Aging, illness, and surgery can shift you from one category to another and the boundaries are fluid. I am a good fit for “Exercising Regularly” classes and faithfully attend ForeverWell Yoga and occasionally ForeverWell Strength. I also participate in several cycling classes each week.

ForeverWell Yoga:  Imagine a studio filled with 75 people over the age of “don’t ask-don’t tell” and many well into their 70’s and maybe 80’s. You need to arrive early to get a spot although no one is ever turned away. The instructor uses kindergarten teacher skills to quiet the noisy group to get started at 8:15 on Tuesdays and Thursdays and reminds us to take care of injuries and sore joints. A long warm-up is followed by instruction in poses that increase strength, flexibility, balance, and mental health. There is something really inspiring about seeing a roomful of seniors in child’s pose or warrior two. I plan my life around never missing this class and I always leave feeling better than when I arrived.

ForeverWell Strength:  This class is mostly attended by women with an occasional guy hanging out in the back row. The formula is a step warm-up, strength work with weights and an elastic band, various exercises with a small ball, and then a cool down. None of it is hugely difficult, but the always-moving and always-smiling instructor keeps us on the go and I get a good workout. When I attend this class, it means that Abby the Black Lab misses her morning walk with friends at the dog park. My health versus the dog’s happiness. It’s a tough choice except on rainy days.

Studio Cycle:  Studio cycling gives me an intense cardio workout without the pounding of running, hiking, and step classes. The bikes are a tech wonder where I enter data about myself and get a personal fitness number to measure whether I am in the target zone of white (take a nap), blue, green, yellow, or red (Ferrari). Each of the many different instructors has pushed me to test my limits while pedaling and sweating to great music playlists.

Other Classes:  The Y class schedule is amazing with 12 to 30+ classes offered daily and I am in no danger of running out of things to try. Although I lack motivation for individual workouts, many people lift weights, use fitness machines, swim laps and do all sorts of things apart from organized classes.

Of course the YMCA is not only for seniors. I enjoy the age, race, and fitness diversity of the membership and have been happy to see kids everywhere this summer. I see lots of uber-fit young adults and fondly remember those days.

But the magic of the Southdale Y for me is that it embraces seniors. It is a social club with coffee and newspapers in the lobby. The prequel to yoga class is a noisy affair where new and old friends chat and laugh. The fitness area revolves around one longtime Y member who spends his mornings on a rowing machine and attracts a steady stream of chitchatting visitors. The friendliness is contagious and on my second visit to a noontime water aerobics class, I was invited to join the group that goes out to lunch once a month. The ForeverWell Newsletter mentions things like bingo, hearing screenings, and balance classes—things that you expect to see at a senior center. But it also offers an Al and Alma’s Lake Minnetonka Cruise, a trip to Winona, and an invitation to help landscape the exterior of the building.

This talk of senior fitness and community is a bit schmalzy but I know that my mother’s senior years were lonely. She would have been happier and healthier with daily interactions with other people. I remember when my in-laws moved into an assisted living facility and my father-in-law felt alienated because the residents looked so old. Of course they were no older than he was, but he didn’t see that he was “them.” What I love about the YMCA is that I look at “them” and am comfortable being “them.” I am in the early years of being a senior, but I see respect for every person of every age and every level of health and fitness. I don’t see condescension towards older people or actually towards any people. Everyone is welcomed and appreciated at the Southdale YMCA and I am glad to be part of the Y community.

*******   Links   *******

https://testguessandgo.com/2018/05/14/diabetes-arthritis-and-the-dog/

https://www.silverandfit.com

https://www.ymcamn.org/locations/southdale_ymca

Medicare-Dexcom-Smartphones:  Wait! Just Wait!

On 6/11/18 Medicare announced a change in policy to allow Medicare beneficiaries to use smartphones in conjunction with continuous glucose monitors.

“After a thorough review of the law and our regulations, CMS is announcing that Medicare’s published coverage policy for CGMs will be modified to support the use of CGMs in conjunction with a smartphone, including the important data sharing function they provide for patients and their families.

The Durable Medical Equipment Medicare Administrative Contractors will issue a revised policy article in the near future, at which time the published change will be effective.”

I have not blogged about this change for several reasons. 1) I am a lazy blogger. 2) I was quoted extensively in articles by Diabetes Mine and Diabetes Daily about my reactions to the announcement. 3) Most of my diabetes preaching these days takes place on Facebook. Today I decided to enter the arena with a blogpost because of the chaos on diabetes social media about what this announcement means and when it will be implemented.

Dexcom initiated the confusion with a 6/11/18 press release that states: “With nearly half of adults ages 65 and up using smartphones, Medicare diabetes patients are now able to use the Dexcom Share feature that allows users to share glucose information with up to five loved ones or caregivers.”

The problem is the word “now.” Now is not the near future as stated by CMS. Adding to the confusion is that a definitive policy was not communicated and standardized throughout the Dexcom organization and some Medicare beneficiaries were told by Dexcom reps that they could immediately begin using the G5 Mobile App. 

A couple of Facebook quotes:

“Damnit. Dexcom said it was good to go last night.”

“I called Dexcom support/app & software department again today they checked & confirmed that we could start using it as of June 11.”

“It would help us all if CMS or Dexcom would give a definitive statement about when. There is no hard statement about waiting.”

On top of that, Diatribe (whom I normally consider to be the Gospel of Diabetes) published an article that is not entirely correct. It states: “Like other users, G5 Medicare beneficiaries can now choose to view real-time glucose data on the G5 app only, the receiver only, or both devices.”

Christel Marchand Aprigliano of DPAC who has met extensively with Dexcom and Tandem in regards to the Medicare negotiations responded on Facebook: “The receiver will still be part of the system. It is still required as part of any Medicare contract. The usage of the app will be in addition to the receiver.”

She also stated:

“While I can’t speak for CMS (Who will obviously have the final say), the meeting on Wednesday was that it would be receiver + smart phone. The receiver is durable medical equipment and the modification of language will reflect the addition of smart device (but not the purchase of said smart device).”

The date of implementation for the policy change is somewhat murky. A Dexcom official confirmed with Medicare diabetes advocate, Larry Thomas, that: “It becomes official on June 21. The technical correction notice must be updated in 10 business days from the notice.” Diatribe also wrote: “According to Dexcom, the deadline for the Centers for Medicare and Medicaid Services (CMS) to update the coverage policy is June 21, if not sooner.”

But Christel cautions us that regardless of date: 

“Do NOT download the app until the actual physical ruling has been changed.”

The last quote that I will share is a June 14 Facebook posting by Larry Thomas about his conversation with a Dexcom Medicare representative:

“The old regulations regarding NOT using the G5 app for Medicare patients are still in place and Dexcom representatives are still required and instructed to report you to Medicare if you are using the G5 mobile app until the rules are changed. This means not only will you be back charged if you are not in compliance, but you will possibly lose future coverage for Dexcom CGM supplies in the future i.e. you will become a cash-only patient with Dexcom. These are her words not mine. If you doubt them please call and speak with a representative in the Medicare department at Dexcom. Remember, just because a tech support person or app support person gives you the okay to use the app, it does not waive your responsibility to abide by the written contract you signed in order for you to get coverage by Medicare for the Dexcom CGM system. I have again requested Dexcom to send out an email to all of us affected by this situation to clarify that it’s “not a done deal yet” (again her words not mine) and have also reached out (again) to the media release department at Dexcom to change the media release so that people are not confused by this.”

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What you need to know if your Dexcom G5 is being reimbursed by Medicare:

1)  You are not yet allowed to use the Dexcom G5 Mobile App. You must wait until the revised policy is issued by DME Medicare Administrative Contractors (MAC’s) such as Noridian. If you use your smartphone before this revision is released, you are in violation of Medicare policy and risk losing Medicare reimbursement for your Dexcom G5.

2)  It is highly unlikely that you will be able to your smartphone exclusively without some use of the receiver. “In conjunction” means “with” and “combining” not burying the receiver in a sock drawer. IMO it is best to refrain from sharing your receiver-avoidance intentions on social media until the final CMS policies are released. Don’t give CMS ammunition to contrive stupid roadblocks to reasonable CGM use by Medicare beneficiaries.

3)  Do not call Dexcom at this time. Christel Marchand Aprigliano of DPAC told me: “Tell everyone to wait for the policy change from CMS in writing – Dexcom will put out information when it becomes available. Please kindly also remind them that the customer service department at Dexcom is trying very hard to provide good customer service, but it is not in anyone’s best interest to call – wait for the announcement published by Dexcom on the website (and I’m sure we will be announcing this as well.)”

4)  Nothing about this recent change in policy affects the use of the Tandem X2 insulin pump as a CGM receiver. Although Tandem and Dexcom are in negotiation with CMS, the current policy is that Medicare beneficiaries are forbidden from using their Tandem t:slim X2 pumps as a Dexcom G5 receiver.

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Special thanks to Christel Marchand Aprigliano of DPAC and Larry Thomas, bulldog Medicare diabetes advocate, for giving me permission to share their words.

Note that all bold text in this post is my emphasis and not that of the organization or person being quoted.

Living on Planet Dexcom

Starting with the Dexcom G4  released in 2012, I have bolused insulin based on my CGM. Although the G4 was not FDA-approved for insulin dosing, I was comfortable doing so “sometimes, in certain circumstances, and within certain guidelines.” That quote comes from a 2013 blogpost titled “To Dose or Not to Dose” and explains that I mostly trusted the Dex but averaged 8 fingersticks per day.

Fast forward 5 years. I regularly dose insulin off my Dexcom CGM and only average 4 meter tests per day. That average reflects sensor day 1 where I might test 8 times and other days where I may only test 2-3 times. The Dexcom G5 is somewhat more accurate than the algorithm of the original G4, but the difference is only a couple MARD points and not a huge statistical variation.

So what has changed that I have eliminated at least 4 meter tests per day?

What has changed is Me. 

I have 10 years of CGM usage under my belt. The early years of Medtronic SofSensors were rocky with a huge improvement when I moved to the Dexcom 7+. The 7+ was reliable for trends but I don’t remember trusting it enough to guide my bolusing decisions. With the mostly reliable G4 numbers, I frankly just became lazy about using my BG meter. I had good insurance with no need to ration test strips and no issue poking holes in my fingers. I was just lazy and welcomed a small reprieve from a few daily diabetes tasks. Before I knew it, the laziness turned into a habit. It was initially a guilty habit but over time CGM reliance became entrenched in my diabetes decision-making. 

And guess what. It didn’t kill me! And now it is FDA-approved.

Lately I have been frustrated with inconsistencies between my meter and my Dexcom numbers. It drives me crazy. I have always had issues with Dex sensors reading low. As I increasingly target normal-ish BG numbers, the Dex low tendency often results in alarms for lows that aren’t lows. Dexcom screams 65; meter says 85. Maybe I calibrate and Dex goes up to 75 before dropping back down to the 60’s. I know that numbers showing up after calibrations are determined by “The Algorithm” but sometimes if I enter 85, I just want the receiver to say 85. 

My perfecto personality overreacts to diabetes numbers. When my meter and CGM feud, I calibrate too often. I over-manage blood sugars. I get lows and highs as I target perfection and my mental health meter explodes. 

What do I do?

Do I start testing 8-12 times a day like in the old days? Do I donate the CGM to Goodwill?

Heck No!

I just move to Planet Dexcom and go with the flow of CGM numbers. I test less.

Although Dr. Bernstein might disagree, I believe that when you are 66 years old with 42 years of diabetes under your belt, 20 or 30 points here and there probably doesn’t matter a lot. Especially if I have a flatter CGM tracing because of fewer peaks and valleys. By not obsessively using my meter, I might miss some large Dexcom/meter discrepancies. At the same time, it hasn’t killed me yet. I am mostly hypo unaware. But because I have had so few catastrophic lows since the introduction of Dexcom G4, I have some confidence that if I pay attention to my body and my diabetes devices, I am somewhat protected from incapacitating lows.

Remember. It hasn’t killed me yet.

Note: Because I am on Medicare, I am using the Dexcom G5 and it will be a while before I have access to the G6. I find it interesting that many of the early-users of the G6 which requires no calibration are celebrating its accuracy. Simultaneously they are claiming that they are not using their BG meter. So actually they don’t know how accurate it is. They are living on Planet Dexcom and finding that it is a relatively safe and happy place to be.

There will come a day when blood glucose meters go away and everyone with diabetes uses some type of continuous glucose meter. We’ll live on

Planet Dexcom or

Planet Libre or

Planet Medtronic or

Planet Eversense or

Some other CGM planet in the diabetes universe.

Relatively safe and happy.

Diabetes, Arthritis, and the Dog

I left Arizona in mid-April and have spent the last month in Minnesota watching snow melt followed by grass turning green and trees getting leaves. For better or worse, medical stuff has taken a good chunk of my time in recent weeks. 

The Dog:  Abby the Black Lab is 12 years old which is old for a big dog. For the last 6 months her breathing has been loud with occasional gagging and coughing. It turns out that she has chronic bronchitis which is kind of like COPD for dogs. Her treatment? A steroid inhaler. The vet told me that I could check out prices locally but recommended that I buy the inhalers from Canada. Sounds familiar for those of us on insulin…. One inhaler at Costco. $369. One inhaler from Canada. $69. My understanding is that while it is illegal to import prescription drugs from Canada, the ban is not being enforced. I am not losing sleep over the threat that I could go to jail for importing medication for my dog. Dr. Google mentions that canine patients can be “uncooperative” when dealing with inhalers and the Aerodawg chamber. Well, duh.

Pump Supplies:  More than once I have written about my need to change infusion sets every two days. I had always received sufficient supplies with no problems until 2018. I recently criticized CCS Medical for being less than helpful in resolving the problem and switched to another supplier. Meanwhile reflecting the power of Social Media I received a call from a customer service supervisor at CCS and I suspect that she would have helped me to navigate the process. But I was several weeks into working with Solara Medica and it didn’t make sense to go back to CCS. I did eventually get my 45 infusion sets from Solara but it wouldn’t have happened without my bulldog sales rep Stephanie. My endo’s assistant had to submit, resubmit, and re-resubmit medical necessity forms and office notes. The normal 30-day BG log wasn’t enough and I had to provide a 60-day log. Ironically none of the ever-morphing requirements for 2-day site changes had anything to do with adhesive allergies and site infections. I am now good for 3 months and dread starting over again in July.

Fiasp:  At my April endo appointment, I was given a Fiasp sample. There were no vials available and I took home a yellow and blue 300ml pen with several pen needles. I didn’t do systematic testing to see if Fiasp injections brought down highs better than Novolog, but I assume it did. I filled a pump cartridge and started using it in my Tandem X2 pump. Immediately I seemed to have an easier time with my morning BG’s.  Unfortunately as others have reported Fiasp seemed to run out of steam on Day 3. By Day 4 my numbers were terrible and I switched back to Novolog.

Was this is a fair trial of Fiasp? Absolutely not and it doesn’t matter. Fiasp is not covered by Basic Medicare and I have no interest in paying out of pocket for it. I had to laugh because several times on my blog, I have mentioned that my sister is very adverse to changes in her diabetes care. After a few days of Fiasp I determined that I am entirely too lazy to figure out pump settings to be successful with a new insulin. Meanwhile my sister has switched her mealtime insulin from Regular to Humalog and will be starting Tresiba soon. She is actually considering ordering the Freestyle Libre! So who is adverse to change???

Arthritis:  A year ago I wrote that arthritis is the “health problem that most threatens my Pollyanna “Life is great!” philosophy.” My systemic arthritis is well-controlled with NSAIDs, but degenerative osteoarthritis in my hands and feet is relentless. Last week my foot doctor indicated that surgery is the only option for my left foot. I am not totally on board with cutting into my foot. It fixes one joint but I still have tendon and heel problems. And then I have my right foot. Psychologically I struggle with having this surgery because it opens the door to dealing with my other bad joints. There is something comforting with staying with the pain I know and avoiding the pain and unknown results of surgery. 

I will schedule surgery for mid-August with the option to cancel it. Two weeks on the couch with drugs will be followed by two months in a boot with a knee scooter. In the short run I have abandoned the close-by health club where I enjoy the fitness classes but know that they are not good for me. I have joined the YMCA which has an extensive schedule of fitness and water aerobics classes directed at various levels of senior fitness. Argh! I can’t even stand to write this but I know that I will feel better. 

Frozen Shoulder:  I think that I am in the early stages of frozen shoulder on the right side. I am unfortunately an expert on this condition and on the 4-year plan. I had my first FS in 2001 on the left side. Four years later my right shoulder was affected and four years later the left again. Now it’s back to the right. Only the first one was horrible. The rest have been annoying and long-lasting but not hugely debilitating. Don’t tell me to stretch the shoulder in the shower. As I wrote in 2013, “if you can get rid of your “frozen shoulder” by doing a week’s worth of exercises in the shower, you don’t have adhesive capsulitis.” My experience with frozen shoulder indicates that it is an inflammatory disease-driven condition that is more related to duration of diabetes than A1c levels. Whatever. If you want to learn more about frozen shoulder, check out my “Argh! Frozen Shoulder” blogpost.

Summary:  That’s it for today. The dog is old. I’m getting older and my feet hurt. So do my hands. I’m a chicken when it comes to surgery but hate the idea of quitting the activities that I love. I had diabetes yesterday and still will tomorrow. But the sky is blue and the grass is green. Life is good.

Happy spring to everyone! 🌷🌷🌷

One Year on Medicare:  Advocacy versus Acceptance

On April 1 I celebrated Easter, traded April Fools’ Day jokes with the grandkids, and acknowledged the festival of Passover. Although I didn’t think of it that day, it was also my one-year anniversary of going onto Medicare. Is that a Medicaversary???

In general Medicare has been okay. I think that I made the right choice going with Basic Medicare and a Supplemental plan rather than a Cost plan (Minnesota’s hybrid version of an Advantage plan). At the same time I have the nagging feeling that I should have put more thought into the possibility of remaining a dependent on my husband’s insurance.

Almost everything that I have needed medically in the last year has been covered by Medicare but it has been a lot more work than my previous interactions with private insurance. Initially a few of my providers and suppliers made mistakes filing claims with Medicare. My Welcome to Medicare visit and a few routine screening tests were denied because a front desk clerk scanned my Medicare card but did not enter Medicare as my primary insurance. Then they entered the wrong date for my Medicare start date. I received lots of denial of service notifications but never a bill and it took a bunch of phone calls to get everything worked out. It was a PITA but not stressful because I knew that Medicare was supposed to pay for everything. There is a reason that Medicare is primarily for retired people because sometimes you need lots of time to navigate the system.

I have had two other issues with Medicare. The first has been discussed extensively on my blog and is the Medicare ban on smartphone/pump use with my Dexcom G5 system. I truly believe that this will eventually be remedied and I have heard from a reliable source that it might be in late 2018. But I’ll believe it when I see it. The second is that starting in 2018 my pump supplier (CCS Medical) has refused to provide the number of infusion sets that I require and my doctor prescribes. Chart notes and letters of medical necessity have been submitted twice. CCS has continued to deny the supplies claiming a change in Medicare rules and has been particularly unhelpful in resolving the problem. Because I know others who have been receiving their prescribed supplies without problems in 2018, I have determined that CCS Medical is the problem and am switching to another supplier.

These days a lot of my diabetes support and information comes from Facebook and direct communication with personal and online D-friends. We each have our own journey through Medicare just as we do with diabetes. Some are satisfied. Others are sad, many are frustrated, and a few are down right mad. Those emotions can change daily.

There are definite pluses and minuses with Facebook. The pluses are that people are very generous with information and it spreads like wildfire. I get the latest diabetes news and learn a lot from other people’s experiences. I belong to about 20 groups but am most active in the Seniors with Sensors, Dexcom G5 Users, and Tandem tSlim Pump groups. There is not a lot of Type 1 diabetes-specific Medicare information on the web and other seniors on Facebook are my best roadmap to navigating Medicare. 

Some of my quandary with Facebook and Medicare is coming to terms with how much I want to live in fight-mode versus how much I should be realistic and accept what is covered by Medicare. Many things that frustrate me about Medicare probably don’t impact my health or life significantly. I think it is stupid that I am required to see my endocrinologist every 90 days in order to get pump supplies. But it’s not a big deal. Although I hate carrying a Dexcom receiver and miss seeing my BG numbers on my Apple Watch, I do not require the accessibility functions of a smartphone or a follower of my CGM numbers. But other seniors do and I might tomorrow or next week. By no means I have been silent on the smartphone issue but at the moment I am willing to let the process work out with Dexcom negotiating with Medicare. I feel somewhat guilty living in the advocacy shadows and am appreciative of others who are more actively fighting. 

But advocacy can easily morph into complaining and anger. I don’t want to spend my senior years whining and feeling deprived because I don’t have the newest and greatest diabetes tech. At the same time I don’t want to live in the dark ages and miss out on new medications and D-tech that can ease the burden of diabetes in my life. 

Today I am one year into Medicare and basking in the mostly “okay-ness” of it. The rest of the story is still to be written and we’ll see how the next year goes.

Living in the Orange:  When Diabetes is Tough

Diabetes is hard these days. I am usually a good problem solver and lately my usual fixes aren’t working. I am seeing patterns that differ from my normal ones. I am not sick. I am not on new medications. I am long past menopause and don’t think I’m dealing with raging or sagging hormones. Other things are sagging but that is a different story for a different day and a different audience.

I’m seeing large spikes after appropriately-bolused moderate-carb meals. My post-breakfast walks are not ameliorating morning blood glucose rises. I am giving ineffectual correction boluses all day long. My numbers climb on 6- to 10-mile hikes. The new pump profile “More” and its bucketfuls of insulin has not made a noticeable improvement.

I haven’t gained weight in recent months, but I do weigh almost 10 pounds more than 4 years ago. My doctors like that but my clothes don’t. My daily average steps are less than in previous years but arthritis and a recent bout with plantar fasciitis have dictated that I pay attention to sore joints. Abby the Black Lab will be 12 years old on Thursday and our walks are shorter than last year. And the year before. Some days we walk and I drop her off at home so I can go farther.

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

Despite being a huge fan of my Dexcom G5, I go crazy with alarms claiming my BG is 48 and it is 98. With alarms that scream 189 when my meter says 140. With alerts that declare 240 and it is…240. And alarms that alert for BG’s of 52 and although I feel fine, my meter says 52. I accept, but hate the Medicare requirement that I use only my Dexcom receiver and not my iPhone, Apple Watch, and Tandem pump.

My pump was replaced a month ago due to a failing battery. Yes, I am still not on board with a rechargeable pump and yearn for the security of carrying extra pump batteries in my meter case. The new pump has an unresponsive T-button which means that every time I turn on or off my pump screen, I have to push the button once. Twice. Sometimes four or five times. The Quick Bolus feature rarely works because I get error messages of too many button presses or it just times out when the final push to deliver insulin doesn’t work. There is a possibility that I will be getting a replacement pump but unfortunately Tandem has changed the T-button to a “two-pronged design” and a new pump might not solve the problem. Facebook tells me that I am not alone in the woes of a stubborn, mushy, unresponsive T-button. I don’t know why Tandem changed the button design but I do know that whatever problem they solved created another. The T-button is the gateway to every interaction with my pump. When the T-button is problematic, my pump experience is problematic. 4 weeks of practice with the new button design has only marginally improved my success rate.

Five years ago when I was cruising in the “Doing Okay” zone of diabetes, I wrote a blogpost titled “It’s Not as Hard.” I concluded that “I think the reason I’m feeling good these days is that my hard work seems to be having good results.” By substituting a few words, I can describe my mindset these days. “I think the reason I’m feeling bad these days is that my hard work seems to be having bad results.”

As anyone with diabetes knows, it is hard to keep making good decisions when the numbers don’t reward the work. If a 12-carb cup of applesauce spikes me to 250, I might as well have Nutter Butters or Oreos. I have definitely fallen into this pattern and thus am not an innocent victim in my diabetes distress.

I know that I need a total reset in my diabetes life and things that have worked in the past include severe Dr. Bernstein-like carb restriction, the Whole 30 diet, and the untethered regimen. To be determined….

Part 2 of the Story

I wrote the earlier section of this blogpost on Friday morning and decided that since I do not entirely trust my pump and insulin absorption that I would choose the untethered regimen option. This plan entails taking a certain percentage of basal insulin by injection in combination with pump therapy. As of Friday evening I am taking 3 units of Lantus at both 7:00pm and 7:00am with the remaining 50% of basal coming from my pump. My blogpost “Building a Foundation with Lantus” gives a good description of the untethered regimen and provides links to other blogposts and articles on the subject.

How is it working? Amazingly well and on Saturday morning, I immediately began seeing some familiar flat lines between meals. The unexpected and unjustified spikes are gone. No doubt I am being careful about food choices but that didn’t make a significant difference in recent weeks. Once again I marvel at how much easier my diabetes is when I combine injections and pump therapy. Too bad it is so much more work.

I think a stable base from two daily Lantus injections protects me from absorption issues with my pump. I am taking slightly more basal than previously and maybe that’s the only difference. I am at a stage in life that I might consider going back to MDI (Tresiba-ready?) although I’m not psyched to abandon the convenience of bolusing with a pump. Ironically Basic Medicare with a Supplement plan makes pumping a much cheaper alternative than injections.

For the moment the arrow on my dia-bete-meter has moved from “Kind of Crappy” orange to a familiar place between “Okay-ish” yellow and “As Good As It Gets” light green. This zone isn’t perfection but it is an area where hard work and good decisions usually reward me with reasonable BG numbers. That’s all I can ask for and I am doing better today than a week ago and a month ago.

One small change in insulin delivery. One big improvement in BG numbers and emotional health.