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.

********

Tuesday morning note: Abby is home and doing well.

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.

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.”

*******

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.

*******

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.

When Diabetes Screams for Attention

Tonight I am in Phoenix.

No, that was last week.

Today I am in Minneapolis.

No, that was two months ago.

Tonight I am in Charleston. Well, kinda that but a few miles northeast. I am in South Carolina-my birth state.

I am here to care for my sister who just had back surgery. She is older than I am in real person years. She is younger than I am in Type 1 diabetes years

But she knows the drill.

Test your blood sugar.

Talk tough.

Take your insulin.

Eat lunch.

Say you’re fine.

Telephone your sister in the next room because you are….

Sweating.

Shaking.

Terrified.

Your BG is 36.

That wouldn’t be so bad except earlier today it was 45.

And yesterday it was 48.

And the day before 38.

And mixed in with those numbers were some 380’s.

The symptoms are bad and glucose tabs aren’t helping. Prune juice is good for old-lady bowels but not a quick solution for blood sugar levels.

Orange juice might work, but too many liquids can be counter-productive with lows. Says she who once projectile-vomited a second glass of juice over a friend.

So I grab my brother’s stash of honey and feed it to my sister teaspoon by teaspoon.

40 minutes later her BG recovers to an acceptable number in the 90’s. What would have happened if I hadn’t been there? Only D-parents and T1’s in “The Club” know the honey trick.

The visiting nurse came the next day and asked if we had called the doctor after the bad low. Huh? Why would we call the doctor?

Meanwhile the younger sister who uses a pump and a CGM goes crazy because the older sister won’t consider a pump. Won’t consider a CGM. Won’t even switch to Humalog from Regular.

Her way has worked for her. At least she thinks so. Quitting smoking and major surgery have exposed flaws in her care that need facing. At least I think so.

Meanwhile as I was slogging through my sister’s health stuff, my Type 1 screamed out for attention.

Look at me! Look at me!

My pump’s rechargeable battery failed with an overnight drop to 15% charge one night and 5% the next. Out of town and a holiday weekend to boot. Kudos to Tandem as a replacement pump was shipped from California and arrived in South Carolina within 24 hours.

My sister is headstrong and adverse to change. But she does fine in her world and will continue to do fine in her world. Ultimately she gets to make her own choices.

They are not my choices. But I have my diabetes and she has hers.

I am headstrong and have been known to be pushy and a PITA.

I was helpful for nine days.

Both my sister and I were glad to hug good-bye on Thursday and not try for day number ten….

*******

The Story: Two weeks ago my sister had major lower back surgery. Despite the number of times that she told the neurosurgeon and his medical team that she has Type 1 diabetes, the hospital orders specified a Type 2 regimen and she was not given long-acting insulin. Holy sh*t! This is a teaching hospital in 2018. I had offered to come for the surgery but my brother wanted me there for the recovery and promised to keep her alive in the hospital…. Thanks to a nurse advocate, he did.

My sister and I have always handled our diabetes differently and we’re both relatively healthy after my 41 years and her 37 years. My 2013 interview with her continues to be one of my most-read blogposts.

I accept that my sister will not use a pump or Dexcom CGM, both of which would be covered by Medicare at no out-of-pocket cost. The one thing I will continue to argue for is a Freestyle Libre. It is physically and emotionally less invasive than other CGM systems and possibly something she could live with. Although I appreciate the safety from middle-of the night Dexcom alarms, my sister doesn’t want that. I think that she would quickly appreciate the ability with the Libre to frequently scan her arm to see BG readings, 8-hour trends, and directional arrows. Had the Libre not required a physician prescription I would have purchased it, stuck in a sensor, and made her use it.

So Sister, I’m not giving up. Check it out!

A Libre is covered by Medicare under part D prescription benefits.

Freestyle Libre.

Amen.

Diabetes Supplies under Medicare: Hard Work

Yesterday a couple of diabetes friends on Medicare got in touch with me to see how things were going with the reorder of my pump and CGM supplies.

One friend emailed: “Just checking in to see how your Dexcom reorder went. Did it ship?  My bundle arrived yesterday (Tuesday).”

I replied: “My Dexcom reorder has not yet shipped…. It is being processed today so I expect it early next week.”

She also mentioned: “I am interested to hear how it goes when you order your pump supplies for 2 day changes.”

I replied: “I think that I will be getting 4 boxes of everything which is less than the 45 sets I would like but more than the 3 boxes the previous lady said….”

A second friend checked in through Messenger giving me an update of his D-life and indicating that everything was going smoothly with his Dexcom orders and his life in general.

I mentioned: “I haven’t written anything on my blog in a while because I don’t have much to say these days. That’s actually a good thing.”

A few hours later things fell apart and my smiles turned into grimaces of frustration. And here I am writing a blogpost.

Let me say that my supply orders are not completely straightforward. I am lucky to escape the cold and snow of Minnesota in the winter and spend several months in Arizona. I am paranoid about medical supplies ending up frozen on my front porch in Minnesota and always double-check with suppliers that they are using the Arizona address. Secondly I am at a stage in life that I need to change my infusion sets every 2 days. My skin and tissue have gotten less durable as I’ve aged and 3-day sites leave me with inflammation at the insertion site, itching and rashes, occasional bleeding, and poor absorption. Fortunately I had been warned in December that in 2018 Medicare was only covered 30 infusion sets every 90 days and I needed physician clinical notes to override that restriction. At my December endocrinologist appointment, I discussed this with my doctor and ensured that she included this in the visit notes.

Before I describe my supply woes, I should say that it is not all Medicare related. Unfortunately lots of people with diabetes struggle with insurance and suppliers to get their supplies. I have been uniquely lucky that I never had problems before getting to Medicare. I am someone who had fabulous service from the universally-hated Edgepark and never had my insurance question anything. My orders reliably arrived 3-4 days after ordering. I am new to waking up in the middle of the night and worrying about getting the correct supplies (and enough supplies!) at the correct location when I need them.

You don’t need all of the details, but both Dexcom and CCS Medical have emailed and called several times in the last 10 days, each time with a different rep and no realization that the order has been already been discussed and finalized. A Dexcom rep called me yesterday afternoon to see if I was ready to confirm my supplies for this month. I said it had already been done but went through everything with him and confirmed that the order would be shipped to Arizona. An hour later I received an order confirmation shipping to……Minnesota. I called Dexcom and spoke with another rep who had to once again confirm the supplies I needed. She  placed a new order and canceled the order going to Minnesota. I think everything is OK and it only took 4 phone calls and 3 emails. And in 3-1/2 weeks I get to do it again!

CCS Medical has been equally attentive as I have received multiple emails and spoken with three different reps about my order. The first rep took my information, changed the shipping address, and indicated that I would only get 3 boxes of infusion sets. She told me that once my doctor’s clinical notes were received, I would be shipped the additional supplies required. A few days later a young man from CCS called and asked if I was ready to order. I said that I had already ordered but we went through it again. He confirmed that I would get 4 boxes of infusion sets so I assumed that they had received my doctor’s notes. After the Dexcom mess yesterday, I went online and checked my CCS order and saw that 3 boxes of infusion sets and cartridges were being shipped. But at least they were going to Arizona!. I called CCS. This rep confirmed the 3 boxes and said that there was no record of the young man’s call on Monday. She said that he didn’t work for CCS?!? She also said that my endo had not submitted clinical notes.

My endo’s office historically gets an A+ in promptly submitting required medical orders and clinical notes for my diabetes tech and supplies. But I called and faxed the office this morning and asked that the needed info to be sent to CCS again. I will keep following up with CCS because I absolutely require more than 30 infusion sets for the next 90 days.

My Thoughts: Medicare has not been horrible in providing what I need to stay healthy with Type 1 diabetes. Compared to many people with diabetes around the world, I am still a privileged patient. The issue has been that it takes a lot more work to ensure that I get what I need and what I am owed. Diabetes is always in the forefront because I have to keep checking that things are being handled correctly. It is like my life resets every 90 days and I have to start from scratch again. I have to see my endocrinologist every 3 months instead of my normal every 6 months. Now with Dexcom it’s a 30-day cycle due to Medicare rules.  My blood glucose numbers are similar to my pre-Medicare numbers. But diabetes is in my face all of the time. It is a bigger burden and I worry more.

But tomorrow I am going on a 9-mile hike. I have what I need today and tomorrow.

So FU Diabetes and Medicare and Dexcom and CCS.

I’ll deal with you next week.