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.

Whole30 or Almost?

I am a firm believer that food choices make a huge difference in making diabetes easier to manage. I personally cannot eat lots of carb-yummy foods along with bucketfuls of insulin and expect anything other than roller coaster blood sugars. I am not good at moderation and usually do better with none rather than one. I can’t stop at a single potato chip or one chocolate chip cookie. In general I eat a diet that would be categorized as moderately-low carb. I do okay most of the time and then drift into patterns where I’m eating foods that trash my blood sugars. Most of my over-snacking with big boluses is in the evenings and I end up with lows at bedtime followed by 2:00AM spikes. Multiple Dexcom alarms destroy my sleep and blood sugars rebel well into the next day. Before- and after-dinner glasses of wine magnify the blood sugar swings and sabotage any semblance of willpower.

Occasionally I need a total reset to break the pattern. For the most part I don’t do diets with names and I have never followed the South Beach Diet or gone Paleo, Keto, Bernstein or Mediterranean. Last spring I decided to investigate the Whole30. The only reason I knew about the plan was that Kelley of Below Seven had blogged about her successful Whole30 experience in February and March of 2017.

The Whole30 describes itself as “a short-term nutrition reset, designed to help you put an end to unhealthy cravings and habits, restore a healthy metabolism, heal your digestive tract, and balance your immune system.” I bought the book in May and dove in headfirst. In general I hate to cook but tried a bunch of the recipes in the book. My husband was patient with the whole experience and we quickly agreed that we mostly like meat, fish, vegetables, and fruit with few spices or add-ons. The Whole30 is a do-or-die plan where sugar, grains, dairy, and all sorts of food are forbidden. Interestingly potatoes are allowed and after rarely eating them for several years, they were a treat. I was quickly amazed at how much fruit I could eat with minimal blood sugar disruption. Absolutely forbidden were diet soda and alcohol. I technically flunked the plan on Day 10 when I put lemon pepper on my chicken without knowing that it contained sugar. Unwilling to go back to Day 1 as the plan requires, I continued towards Day 30 as an imposter with lemon pepper on my conscience.

All of a sudden on Day 25 I didn’t care anymore. My first sin was Diet Coke and a wonderful carbonation buzz. The second was a glass of red wine. Surprisingly the food restrictions of the plan didn’t bother me much. I had few sugar cravings and my most-missed foods were string cheese and peanuts. I felt little guilt about quitting so close to the finish line because I lacked the conviction that Day 30 was going to change my life.

Fast forward to October. After a mostly-okay summer, I was again mired in bad habits. Too much diet soda, too much alcohol, too many snacks. I hit bottom two weeks ago when my husband was out of town and I determined that three old-fashioned donuts (two chocolate-covered and one sour cream) would be an acceptable dinner. You can imagine how well that carbohydrate binge went. Despite massive doses of insulin, my blood sugar soared and crashed all night long.

I started the Whole30 again the next morning. The first day was rough as my blood sugars relived the last 24 hours. Since then it has been smooth sailing. The food part of this diet continues to be easy for me since I really like vegetables, fruit, nuts, meat, and eggs and it is not intended to be a forever-diet. I have made my two favorite recipes from the Whole30

Spinach Frittata Whole30

cookbook—Spinach Frittata and Classic Chili—more than once along with basic dinners of meat, vegetables, and potatoes. Mixed nuts and honeycrisp apples have worked great for snacks and bananas, grapes, and juice have combatted the occasional lows. I am not missing Diet Coke which is kind of a miracle.

Am I cheating? Yes, but within the ground rules that I established at the beginning of the diet. I use glucose tabs for lows when away from home and obviously they are a big no-no. But they are convenient and “medicinal.” I am also allowing things like lemon pepper and soy sauce which are forbidden. Other than that, I am toeing the line.

Will I make it 30 days? Probably not and that is not my immediate goal. I have an endocrinologist appointment tomorrow and that was my original target end date. Unfortunately the donut bender will show up as Day 1 of my 14-day CGM tracings. Other than that, my BG numbers have been good. If I don’t indulge in a post-endo Diet Coke reward, I might keep going for another week or two. Maybe all the way to Day 30….

Is there anything magical about the Whole30? Probably not. It is one of many diets with a rigid no-cheat framework that can help people break bad habits in the short run while providing motivation for the future. It is probably an oversell that it claims to change your life in 30 days. At the same time both of my “almost Whole30” experiences have been successful in steering me back to healthy eating and better diabetes numbers.

If you have interest in trying the Whole30 plan, you can explore the website and probably learn everything you need to know. I bought the book at Amazon and haven’t regretted having it for reference and recipes. You should read Kelley’s series of blogposts at Below Seven because she details what she cooked, how she felt, and how it affected her diabetes. And unlike me she made it 30 days without breaking the rules!

A final question which I don’t address today is: If following a plan like the Whole30 makes diabetes easier and allows me to almost flatline my blood sugars, why don’t I eat like this most of the time? Good question.

Talking Types with Lloyd Mann

I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

Arthritis on a Diabetes Blog

When it comes to living with both Type 1 diabetes and arthritis, I don’t experience the amount of pain and disability that burdens some of my favorite people in the DOC. Rick Phillips who deals with rheumatoid arthritis and ankylosing spondylitis shared his story on my blog a couple of years ago. Rick tirelessly advocates for people with diabetes, but he often admits that arthritis negatively impacts his life much more than diabetes. Molly Schreiber has had Type 1 diabetes for 28 years. Her rheumatoid arthritis is a formidable opponent and she deals with the worst that RA can dish out. In general I am doing okay when it comes to living with arthritis. Except when I’m not….

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I am good at diabetes.

I am bad at arthritis.

I have had a tough summer. Although I was diagnosed diagnosed with inflammatory spondyloarthropathy over 10 years ago, my problems are peripheral. My hands hurt and my thumb joints are shot. In May I woke up with horrible heel and foot pain which continues to get worse despite following doctor’s orders.

I don’t write about arthritis very often because I am a diabetes blogger. Type 1 diabetes is a constant in my life and I do little without taking diabetes into account. After 40+ years of T1, I have no major D-complications. At the same time diabetes is a “needy condition” that requires constant affirmation and is entrenched in my psyche. More than once I have mentioned that I deal with other inflammatory and autoimmune conditions in addition to diabetes. I once wrote about a skin problem called annulare granuloma and mentioned that I felt helpless in dealing with it because “When you have Type 1 diabetes, you get used to the idea that WHAT I DO MAKES A DIFFERENCE in my health.” I’ve never bothered writing about hypothyroidism because it goes hand-in-hand with T1 diabetes. Mine was discovered through a routine blood test 21 years ago. I’ve never struggled with symptoms and my Synthroid-generic dose is the same as prescribed in 1996.

Arthritis. This is the thing that I’ve not written about and it is the health problem that most threatens my Pollyanna “Life is great!” philosophy.

I think that some of the personality traits that make me “good” at diabetes make me bad at arthritis. Diabetes loves people who overdo things and power through when you don’t feel great. Diabetes thrives on doing the same thing over and over again. Arthritis does not reward overuse of my body and I know that I would feel better if I didn’t sync as many steps on my Fitbit. (Actually I put my Fitbit in the drawer a few weeks ago because I need to rest.) I know that I would feel better if I gave up playing golf. I quit tennis a dozen years ago and still feel sad about that. I don’t know about hiking, but I suspect that I would do better with fewer mountains and more walks around the block.

It all comes down to pain.

Unfortunately sitting at home doing nothing is worse than pain and diabetes is a bear when your body is glued to a chair. I have always been active and I attribute my relatively good health to exercise. Blood sugars are better with movement and I believe that exercise helps ward off D-complications such as heart disease and neuropathy. Transitioning to a couch potato life because of sore feet and swollen fingers doesn’t seem like an optimal life strategy to me.

But exercise currently brings me pain.

I am strong but pain makes me sad.

My primary arthritis diagnosis is inflammatory spondyloarthropathy and it is a type of arthritis where many people feel better moving rather than resting. It is a type of arthritis that fits my “can’t stand to sit down” personality. But my hands and feet are diagnosed as osteoarthritis. I’m struggling with achilles tendonosis, heel pain, and elbow tendonitis. Overuse “old people” conditions.

Back to diabetes. What happens to my blood sugars when I am not active? Mostly they get worse. But I can take more insulin and then they are OK. But I gain weight and my insulin sensitivity goes to h*ll.

I am a self-manager of my diabetes and my endocrinologist is totally mostly on board with that. Diabetes usually does best when you manage it in the moment (AKA Sugar Surfing) and my Dexcom G5 protects me from most of the submarine lows that drive my endo crazy. My rheumatologist has never gone ballistic at my decision-making, but he occasionally looks askance when I arrive at an appointment and say that I reduced the dosage of one medication and refused to take another. At the same time he is older than I am and still plays tennis. He goads me to get back to the courts and suggests that I wear an arm strap to help with elbow tendonitis and use more of the topical Diclofenac gel to ease pain. More than any of my other doctors he understands how my medical issues are woven together in a spiderweb of autoimmune and inflammatory conditions.

I am an uber-educated diabetes patient. I understand my disease and voraciously read diabetes research articles, websites, blogs, and message boards. I am an active participant in the DOC and credit my fellow PWD’s for most of my knowledge and activism. I arrive at my endocrinology appointments with printouts of BG statistics and always have a list of pertinent questions.

I am less capable when it comes to my arthritis. To tell you the truth, I am not completely sure of my diagnosis. I do not have rheumatoid arthritis (RA) and once you don’t have that, it can be hard to find a niche for your condition. My medical records reflect terms such as inflammatory spodyloarthropathy, inflammatory polyarthritis, and osteoarthritis.

When I look at the future, I am much more afraid of physical limitations due to arthritis than I am of diabetes. I don’t worry about diabetes complications and have never experienced diabetes burnout for more than five minutes. But what will I do if walking is unbearably painful, elbow pain blocks me from playing golf and carrying my grandchildren, and hand pain rules out opening a jar?

I am good at diabetes.

Unfortunately arthritis scares the bejesus out of me.

Pain is a formidable opponent.

Pain.

* The image for the pain measurement scale was purchased from shutterstock.com.