Tag Archives: type 1 diabetes

Arthritis on a Diabetes Blog

Posted on by

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….

*********

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.

Medicare and CGM Coverage: Swirling Emotions

Posted on by

If you’ve been following the saga of Medicare coverage for the Dexcom G5 CGM, you know that Medicare beneficiaries will be forced to use the Dexcom receiver while being absolutely forbidden from using smartphones and the G5 and Follow apps. Coding and Coverage information released by Noridian Medicare in March 2017 clearly states this Medicare policy:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Few people in the diabetes community think that this makes sense, but for now it is the rule. Most of us on Medicare are grateful for the thousands of dollars we will save annually by having our Dexcom G5’s reimbursed, but emotions are swirling. JOY for coverage. ANGER at the restrictions. ANTICIPATION that sensors will be shipped soon. DISGUST that seniors are being treated differently. FEAR that no longer can our caretakers track our numbers in real time. SADNESS that we are losing access to our phones and watches. TRUST that this policy will change.

Lately I have been waking up in the middle of the night and stewing about being forced to abandon my smartphone and Apple Watch as Dexcom receivers. I worry about whether I will be able to integrate my G5 into my t:slim X2 insulin pump once the the Tandem software is approved. In the light of day I try to sort through my feelings knowing that I shouldn’t lose sleep over this. Mostly I feel frustration because it is a stupid ruling that I have little recourse to challenge. There is sadness because I really like my having CGM number on my watch. There is the sense of loss taking away something that I once had. And not to be ignored is the spoiled-child syndrome that “I want what I want when I want it!” and it’s unfair that others have it and I can’t.

For the most part anger about this situation is not one of my emotions, but others are frustrated, furious, and ready to do battle. A couple of quotes from Facebook:

“This is a ridiculous and ageist policy and I have said it many times. It’s not right.”

“I find it abhorrent that Dexcom G5 is MEANT to be used with smart technology and ANYONE not on MEDICARE has this option.”

“There is no way I can sign that form. It’s aggressive and hostile and incredibly ageist.”

Another emotion I do not have is fear. I currently neither use the Share app nor need someone alerted to my highs and lows. But others are dependent on a caretaker monitoring their BG levels and their safety is jeopardized with the denial of cell phone use.  Some Medicare recipients have disabilities such as low vision that make the larger screens and adaptability features of smartphones a better choice than the small screen of a Dexcom receiver.

“My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app.”

“Share has saved my life a couple of times on the G4 when I was mowing grass and didn’t hear the Dexcom alarm, but I did hear my phone when my wife called.”

“I don’t feel my Lows and my guy gets the alarm on his phone….This is a *safety issue* in my opinion. If we were totally able to feel things and get through without the chance of conking out we wouldn’t even need the darn CGM.”

“I have retinopathy of prematurity and have always had bad vision. Seeing my Dexcom readings on the iPhone is much easier than on a small receiver.”

My Thoughts and Things to Remember:

When my reasonable brain takes control, I know that I will survive using my Dexcom receiver. That is all I had for the first seven years of my nine years using a CGM.

I don’t have medical reasons that my iPhone and Apple Watch are better than my receiver. In fact I prefer dismissing alerts on the receiver because I can just push the button and not even look at the number! BTW that is a bad thing…. On the phone, I need to scan my fingerprint, tap on the alert, and go to the Dex app to dismiss it. I will miss automatic syncing of my G5 numbers to Dexcom Clarity, Tidepool, mySugr, and other apps, but I will survive.

My blog was started in the spring of 2013 and quickly became known for advocacy for Medicare Coverage of CGM’s. If at any point we had been offered the possibility of CGM reimbursement contingent on no smartphone use, we would have jumped at the chance. What we’ve got now is not perfect but it is thousands of dollars per year better than nothing.

Right now I think a lot of my stress comes from just not knowing what is going on. Through the early months of working out the logistics of Medicare, Dexcom did not do a good job of communicating with seniors. Some people were getting email updates. Others of us called Dexcom numerous times to be put on “The List” and never received any information. Seniors are still being told different things by different representatives from Dexcom, DME suppliers, pump companies, and medical professionals. Fortunately there is now some information on the Dexcom website but it does not answer all of my questions. I will definitely have an easier time coping once I know the rules of the game along with hardware and software modifications.

For the most part I am resigned to the Medicare restrictions and am working to accept them. In the short run I think we need to get Medicare reimbursement established before fighting the smartphone ban. Others disagree with me and are making calls, writing letters, starting petitions, and even hiring lawyers. And that is good because although patience is sometimes the best strategy, other times anger and in-your-face advocacy are the only way to force change.

Right now I know that whatever the policy ends up being, I will adapt. I haven’t used a receiver in years, but I’ll get used to it again. I can’t live in fighting mode all of the time and right now need to find acceptance. Although I know that I will eventually take my place on the battlefield fighting Medicare CGM policies, at the moment I am choosing to let things take their course and trust that Dexcom and JDRF will get this changed. At the same time I am cheering on those actively opposing Medicare. One online friend sums up my views perfectly:

“A year or two ago we were all writing letters to our Congressmen to get on board with a bill to have Medicare pay for the Dexcom. Now that is is approved, I’ve decided to let go of any anger and resentment (never does a diabetic good anyway) and am thankful for the approval and the fact that I won’t be paying out of pocket anymore, despite the absurdity of Medicare’s restrictions. However, I will still work in any way I can to change those restrictions if possible.”

Another senior stated it even more succinctly:

“It is what it is. You want Dexcom through Medicare? You sign the form.”

Amen.

 

Note: This blogpost only addresses the smartphone ban for Medicare coverage of the Dexcom G5. There are other problematic policies such as only 2 test strips per day being provided to CGM users. Those issues are in the wait-and-see category and worthy of discussion another time.

Dexcom G5 and Medicare:  What’s Going On?

Posted on by

History

On January 12, 2017, the Centers for Medicare & Medicaid Services (CMS) released a ruling indicating that the Dexcom G5 CGM was a therapeutic medical device and eligible for reimbursement as Durable Medical Equipment (DME). I published a blogpost on 1/15/17 discussing this ruling and I urge you to read it as background for what has been going on (or not going on) in the last six months.

On 6/1/17 Mike Hoskins of Diabetes Mine published an article titled “Stuck Waiting for Medicare CGM Access” and this is good background for connecting the dots from January to June. Yours truly (Laddie Lindahl in Minnesota!!!) was one of the seniors highlighted in the article. Mike summed up the last six months pretty well by writing:

“but so far CMS has not proposed a national coverage policy. As a result, many PWDs on Medicare who previously had coverage or are trying to get CGM coverage are being told they can’t get the devices and supplies they need because “nothing is finalized yet.”

I found the end of the Diabetes Mine article to be quite alarming as Mike suggested:

“Insurance companies send out their contracts to medical supply distributors during the summer months, leading up to open enrollment periods that typically start in the Fall months. So right now is a critical time. Contracts are being crafted and finalized, and with all this Medicare CGM confusion, insurers and third-party distributors may very well simply leave out any language about Dexcom G5 coverage. Effectively, Medicare CGM’ers could face no coverage for their Dexcom supplies for 2018 because so much is up in the air right now.”

I transitioned to Medicare in April anI have been able to continue using my Dexcom CGM due to an extra G4 transmitter saved from my free upgrade to the G5 and from a couple of boxes of stockpiled sensors. Everything I am using is out of warranty, but it works. I am okay….but only for a while. This spring it was announced that Liberty Medical was going to be the authorized Medicare supplier for the Dexcom G5. They were quickly overwhelmed by the demand. (Who knew that it was so complicated?) I placed an order with Liberty and canceled it within a few days of shipping. It had become common knowledge that Liberty was not being reimbursed by Medicare and those of us placing orders might be responsible for the out-of-pocket cost. Meanwhile Liberty withdrew from supplying G5 supplies under Medicare as of 5/28/17.

Where are We Now?

I have had no reliable information source during the last weeks and months, but I have managed to piece together some news. Here is some info with the source and I’ll let you judge the reliability.

Dexcom: Some people on Facebook have mentioned email updates from Dexcom and I have called the company several times and was assured that I was on “The List.” I’ve never received an email. Yesterday I called Dexcom and learned a few new things.

1) Dexcom has set up a Medicare link in their phone menu. Call the Customer Service number at 888-738-3646. Select Option #1 for placing an order. Within that menu, select Option #1 for Medicare Help. Please note that Dexcom is experiencing high call volume about Medicare and I waited almost 10 minutes on hold.

2) If you are desperately out of supplies, call Dexcom and in some cases they are providing supplies.

3) I suggest that you call Dexcom to ensure that your account has the correct insurance information. On Tuesday mine was showing private insurance and Edgepark as my supplier. It has now been corrected to show Medicare as my primary and BCBS as my supplemental.

4) I was told on Tuesday that we each have a “Reorder Specialist” assigned to our account. I found out the name of my specialist and got his contact information. I was told that these specialists are sending out the informational emails and I had not received any because I was not “in his pipeline.”

Facebook: I am in a Facebook group called Seniors with sensors (CGM’s) where members share their experiences and opinions. Of course a lot of the info is “my endo told me” or “the Dexcom email said” or “the letter from Liberty said.”  We all know that the world will collapse into a black hole when Facebook is the source of all knowledge, but here are some things that I have learned:

“I heard from my endo this morning that Dexcom will be doing their own distribution for their Medicare CGM products. No third party like Liberty Medical (thank god.) The hang up at the moment is they are looking for a supplier for meters/strips which Medicare is requiring.” 6/21/17

“Dexcom also told me this week that they will be distributors.” 6/21/17

“I just got off the phone with a very nice Dex Customer Service Rep. Still many unanswered questions from Medicare but she says they expect to be alerting those on the waiting list by end of June” (The rep I spoke with yesterday was unwilling to give me any timetable.) 6/19/17

‘Did you get the email today from Dex with updated requirements from Medicare? They are ” working on it .” Still no way we can use phone / watch combo. I think that ageist and unfair.” 6/15/17

Diabetes Mine: In a 6/15/17 article about the ADA Scientific Sessions, Mike Hoskins and Amy Tenderich shared an update from Dexcom executives:

“If you’re wondering what’s going on with Medicare coverage of Dexcom CGM, here’s the rub: CMS has mandated that Dexcom ship out to Medicare patients “everything they would need” to use the product. Since calibrations with a fingerstick meter are required, that means Dexcom has to find a traditional meter company to partner with to actually ship meters and test strips in the package with their CGM. Kinda crazy, and definitely creating delays for the company and its customers!”

The Part We Hate!

It is becoming increasingly clear that unless things change, Medicare users of the Dexcom G5 will be forbidden from using their smartphones in any form. I understand and previously wrote about the importance of the receiver in allowing the G5 to be designated as DME. The idea that one cannot use a smartphone in conjunction with the receiver is absurd. The dollar value of Medicare reimbursement is significant enough that I can go back to using my receiver, but I hate the idea of abandoning my phone and especially the ability to see my Dexcom numbers on my Apple Watch.

For me it is an inconvenience. But how about those seniors who benefit from someone using the Follow app to monitor their BG trends. How about those seniors who use the accessibility features of their iPhone to access their BG numbers?

It is a stupid requirement. At the same time, my personal feeling is that we need to establish Medicare CGM coverage before we fight this battle. If you read the original CMS ruling, the only reason that the Dexcom G5 qualifies as DME is because of the receiver. If we don’t need the receiver, then unfortunately the G5 is no longer DME. So we need to be careful. That is my 2 cents!!!

What Others Are Saying?

When I began writing this blogpost, I asked my fellow seniors from the Seniors with sensors (CGM’s) Facebook group to share their thoughts. I learned a lot.

“Although it will be a inconvenience for most of us, which will hopefully be temporary, those using the Tandem X2 insulin pump or an Apple Watch series 2 should still be able to connect directly to the Dexcom G5 via Bluetooth by this fall with expected software upgrades from both Apple and Tandem”  —Larry

My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app. He had a severe car accident due to a low blood sugar which the initial 4 months of hospitalizations and rehabilitation cost almost 2 million dollars. If he would have just had a CGM it would have saved all that money, he would still be working and not on disability, and I would still be working. Every diabetic at diagnosis should get a CGM and certainly should not get them taken away at medicare age. He got his after coming out of rehab. We as caregivers near and far need to be able to assist our diabetic family and friends with the features Dexcom has like Share and Follow. —Barry and Kim.

As a type one diabetic who lives alone, it is mandatory to have a CGM that is 100% covered by Medicare. This is a lifesaver. As much as I would hate to be without either my Tandem pump or my Dexcom CGM, my Dexcom is crucial to my daily survival. I will be eligible for Medicare in September, 2017, and I am so very disappointed to find that I will have fewer benefits than I do with private insurance now.  —Cindy

Laddie, my biggest concern is with the exclusion of phones, and especially smart watches from Medicare’s program. In my opinion the use of a Smartwatch to manage Bg and treat T1D is a major advance in T1D care. It is a real time process. No phone need come out of a pocket, no receiver from same or elsewhere. Tap your watch,see your Bg, make treatment decisions in real time. I have been absolutely amazed by this one simple process and the impact it’s had on my life and T1D management. Somehow we must get Medicare to recognize this and allow the use of this technology for treatment. Either that or Dexcom has to build a receiver/watch.  —Dave

I am a Therapist. The watch being important to my work. It is not possible for me to check my blood sugar on a receiver or even a phone at this point during office visits. This restriction on app use is going to cause a problem for me .  —Deidre

Two Medicare people in my household. Repeatedly denied CGM coverage despite multiple appeals and documented Certificates of Medical Necessity the app by my PCP/Endo. Brittle Type 1 46 years with history of severe hypos with seizures and one incident of Nocturnal hypoglycemia leading to coma. One incident of severe DKA requiring 5 days in ICU.  —John

I haven’t experienced a coma yet, but that’s what happens when you have no cgms or no partner to watch over you.  —Dianna

I know, Dianna. Before my CGM I was almost afraid to go to sleep at night.  —Cindy

Signed up for the CGM in January. Now middle of June. Still waiting. Yesterday, another low where I crawled to kitchen for OJ. Made it again. Every time, I wonder when the time will come when I don’t make it.  —Camille

Summary

I think that Camille said it all:  “Yesterday, another low where I crawled to kitchen for OJ. Made it again. Every time, I wonder when the time will come when I don’t make it.”

Diabetes Pregnancy: Now and Then, Part Two

Posted on by

As I mentioned in yesterday’s post, I recently approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Yesterday the first part of my story was highlighted at Six Until Me. Today is the second part of my tale. Check it out!

Diabetes Pregnancy: Now and Then, Part Two

 

Diabetes Pregnancy: Now and Then

Posted on by

A while back I approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Today the first part of my story (with a few choice comments from Kerri) is highlighted at Six Until Me. Check it out!

Diabetes Pregnancy: Now and Then

Learning to Like Tidepool

Posted on by

In previous blogposts I have mentioned my frustration with finding a platform where I can download and view data from all of my diabetes devices. Diasend used to be my go-to site and would still work for me if I used my Dexcom G5 receiver. But I am a hipster-oldster who uses her iPhone and Apple Watch for CGM numbers. An email to Diasend followed by a phone call to Dexcom last week indicated that there are no plans to allow G5 Mobile integration into Diasend for US users. Dexcom Clarity is great for analyzing my CGM data but it doesn’t include pump or BG meter information. Tandem t:connect allows me to download my pump and Freestyle Lite meters but does not show CGM information. Maybe when the Dexcom G5 is integrated into the t:slim X2 later this year, the Tandem site will include all of my information. Although I love mySugr and the cute monsters, I don’t need a day-to-day logging app. Pretty quickly I get down to Tidepool as the only platform that is compatible with all of my devices.

My first experience with Tidepool was last fall when I participated in a research study through Glu. I downloaded my pump and meters weekly while my CGM synced to Tidepool through Apple Health. I was required to enter my food and carb counts through the Blip Notes app. The use of hashtags for notes initially bugged me but with practice it became quite easy. The Basics screen in the Blip dashboard was novel and my data was displayed in charts and domino dot patterns. I don’t recall spending much time reviewing the Daily View screen. In general I couldn’t envision how my endocrinologist would work with Tidepool because she requires printed reports. After the Glu study ended, I drifted away from Tidepool.

Fast forward 7-8 months and I am becoming a Tidepool fan. A couple of things happened to bring the website back to my attention. One, Chris Snider was hired as Community Manager and I assume that he is instrumental in the new informative emails showing up in my inbox. Two, it was announced that Tidepool users are now able to share their data with Type 1 diabetes researchers. You can learn more about the Tidepool Big Data Donation Project and how to participate at this link. Three, a recent email shared a clinician’s video featuring Diabetologist Dr. Anne Peters demonstrating how she uses and interprets Tidepool reports. I am always interested in what endocrinologists are seeing and thinking and her presentation helped me understand how I could gain insights into my diabetes using Tidepool.

I encourage you to take the opportunity to watch this video.

 

***** Interruption *****

Why do I download data?

I download data: 1) to take to every endocrinology appointment,  2) to review my numbers for a pat-on-the-head or a kick-in-the-butt, 3) to provide printed reports for Medicare which requires a 30-day log for pump supplies and a 60-day log for CGM supplies, 4) for various clinical studies and/or beta-testing apps, and 5) for curiosity to test new data platforms.

***** End of Interruption *****

Tidepool is a non-profit company and was founded in 2013 by Howard Look, a self-described nerd who has a daughter with Type 1 diabetes. Like many small diabetes tech companies it grew out of the #WeAreNotWaiting movement and is powered by geeks, D-parents, and PWD’s. As Look mentions at the end of the video, employees at Tidepool “have pancreas in the game.”

To get started with Tidepool, go to www.tidepool.org. Although you can check out the website in any browser, the Uploader is a Google App and you must use Chrome on either a Windows or Mac computer for downloading and viewing data. I have contacted Tidepool support several times by email and have always received prompt and courteous help.

Where do I go with Tidepool from here? I am pleased to be participating in the Big Data Donation Project and have recurring calendar reminders to download my pump and meters. My Dexcom G5 syncs to Tidepool continuously through Apple health. I also plan to periodically review my own D-numbers and graphs through the Blip dashboard. After 40+ years of Type 1, I am not good about day-to-day logging and probably won’t use the phone app very often, but you never know. I am currently a beta-tester for a new version of the app and maybe I’ll get hooked. Rather than reviewing my graphs and numbers on a computer, my endocrinologist uses print-outs that are eventually scanned into my medical record. In the Tidepool video above, Dr. Peters provides a glimpse of the future where diabetes data is viewed online and interactively with patients. It will be a long time before that future shows up at my doctor’s office.

In addition to exploring Tidepool.org and signing up for the Big Data Donation Project, you can learn more about the company through these links:

Diatribe (2014):  How the Tidepool Data Integration Platform Can Ease Diabetes Management: Our Interview with Tidepool CEO Howard Look

Six Until Me (2015):  #WeAreNotWaiting: The (Not So?) Brief Story of Tidepool

Diabetes Mine (2016):  Tidepool Goes Big After White House Visit

Diabetes Numbers Podcast Episode 23 (2017):  Tidepool’s Big Data Donation Project

In conclusion here are screenshots provided by Tidepool of the Blip Basics Home screen and a Daily data view. Note that the Daily view shows insulin, carbs, BG’s, and notes in the same timeline as CGM data.

One Month of Medicare with Type 1 Diabetes

Posted on by

I thought it was going well.

Some of it is great.

I’m learning that maybe not everything is going so great.

I haven’t screamed at a phone menu yet.

I officially started Medicare on April 1. I seem to have figured out how to pay my bills through auto payment. I have received a box of pump supplies and have an order in place for CGM supplies. I have received my insulin at no cost through Medicare Part B and had another prescription covered at no charge through Part D. I belong to a new health club through a program offered by my supplemental insurance. On the surface all of this looks great and some of it is. Unfortunately not everything is going smoothly and Medicare is not approving everything.

What’s Going Great:

Silver&Fit:  This fitness program is a benefit of my BCBS Supplemental policy. It provides a membership at a participating fitness facility, an instructor-led class, or access to Home Fitness kits. I joined a club five minutes from home that has a huge number of work-out machines, weights, a spa, nutrition and fitness programs, locker rooms, and free fitness classes. I have been attending numerous strength and cardio classes and having a great time. No charge at all. My only limitation is that I can only use the club I joined and not the other branches around Minneapolis. I literally walked in the door and was a member 10 minutes later.

Doctor Visits: In April I had two routine doctor appointments. It was easy to provide my Medicare information and as far as I can see, they are being covered with no issues. I feel bad seeing how low the Medicare reimbursement is for my doctors.

Not Perfect but On the Right Track:

Insulin for Pump: As I explained in a previous Medicare blogpost, insulin for an insulin pump is covered under Part B DME. With my supplemental plan coverage that means I get my insulin at no cost. I am not bound by formulary restrictions nor does my insulin require a copay or put me into the Part D donut hole. The new prescription from my endocrinologist contained the required information and I spoke to a pharmacy tech to remind them to file it with Part B. Very quickly I got an email that the prescription was ready; it had been charged to my Part D plan with a charge of $481 for 3 vials.

The next morning I went to Walgreens and fortunately the pharmacist on duty knew how to correct the problem. She told me that it would be referred to the central Walgreens Medicare department and it might take 2 days to set up. That afternoon I got a call from the Medicare department and was asked for information such as my pump brand, model, serial number, purchase date, and whether it was paid for by Medicare or private insurance. That all made sense and was easy to provide. She finished our conversation with two questions. How tall are you? What do you weigh? Huh??? She said that my insulin would be ready for pick-up in an hour and it was.

Pump Supplies: In March I contacted Tandem Diabetes to learn my Medicare supplier for pump supplies. I was told that according to my supplemental insurance, I should use CCS Medical and Tandem would set up the account for me. CCS has been great so far and has contacted me and my endo’s office several times to get the necessary information. One requirement was a C-Peptide test which I had never had before in my diabetes career. As expected, I passed or failed the test depending on your criteria. I failed because I produce minimal to no insulin. I passed because I qualify for a pump and supplies under Medicare.

My pump supplies arrived quickly and were exactly as ordered. Last evening I went into the Medicare site to check my claims and was stunned to see that my pump supplies were denied. I called Medicare this morning and got no good answers as to why. It was suggested that maybe I was using the wrong supplier and I was given the name of another supplier who doesn’t even provide supplies for insulin pumps. I called CCS and the rep indicated that they were already working with Medicare to get it straightened out. She said that it was very common for supplies to be denied on the first go-round for patients new to Medicare. She assured me that everything is OK and I am choosing to believe her.

A Total Mess:

All of us on Medicare were thrilled when the Centers for Medicare and Medicaid Services (CMS) announced in January 2017 that the Dexcom G5 was now covered as a therapeutic CGM under Medicare DME. Soon after that CMS released a document with preliminary coverage criteria and Liberty Medical was identified as the sole Medicare-approved supplier for the G5. Liberty was deluged with calls but managed to start shipping supplies to some customers. One caveat however. In order to receive supplies, you had to sign that you would be responsible for the cost of the supplies if you were not approved by Medicare. Meanwhile it was announced that more specific coverage criteria were still to be released and Medicare was not approving orders filled by Liberty.

Last week it became apparent that Liberty is not going to continue to supply G5 supplies for Medicare beneficiaries. All along Dexcom has indicated that it will not (cannot?) sell G5 supplies out-of-pocket to people covered by Medicare. Please note that the cash price from Liberty is much higher than the previous cash prices from Dexcom. Dexcom will sell G4 supplies to Medicare beneficiaries out-of-pocket. On Monday I received a letter from Liberty officially indicating that they are not going to provide Dexcom supplies after May 28. At this time there is no other supplier.

I placed an order at Liberty about a month ago. I was called last week to indicate that they had everything required to process my order and that it was under medical review. Today I canceled the order because I do not want to be stuck with the responsibility of getting an initial denial by Medicare, having to pay cash for the order, and then filing an appeal. I think I’ll wait to see what happens in coming weeks or months.

Dexcom has been quiet and provided little help to seniors. Today some people received a form letter from Dexcom indicating that they are working on the problem and stating: “If you have an immediate, critical need for Dexcom G5 Mobile CGM supplies, please contact Dexcom at 888-738-3646.” I did not receive the email.

So currently the Dexcom G5 is covered by Medicare, but not really. I am choosing to be patient and optimistic that everything will be worked out soon. Many other seniors on Facebook are angry and less optimistic.

Summary:

Some of my diabetes needs are being met through Medicare and other things are being worked out. So far I have had no problem reaching customer service reps at Medicare, CCS Medical, Walgreens, Dexcom and Liberty. Everyone has been polite and helpful to the best of their ability. Unfortunately no one at Dexcom or Liberty really seems to know what is going on and I believe them when they say the delay is with CMS. The Medicare Help Line was answered promptly but they could give me no reason for my supply denial and then nicely gave me inaccurate information. CCS Medical has been very responsive and so has Walgreens.

Right now I have everything that I need, but that won’t be true for the longterm. In the past I have often had problems when switching insurance plans and suppliers. I am hopeful that most of my Medicare problems are in the same category. I expect the pump supply problem to be resolved fairly quickly. I am less optimistic about CGM coverage.

So that’s today’s story about Medicare and Type 1 diabetes. Stay tuned for more. 😀

 

Wildflowers, Wildlife, and Diabetes in the Wild

Posted on by

My spring has been filled with wildflowers on the hiking trail and wildlife in the neighborhood. I’ve seen hillsides of yellow poppies along with purple desert lupines, orange globe mallow, red Indian paintbrushes, and white soaptree yucca blooms. I’ve seen snakes, lizards, javelina, coyotes, and recently a bobcat while on an after-dinner bunny hunt** with my grandchildren. My spring has also had an interesting mix of “diabetes in the wild.”

**Whenever my grandchildren visit Arizona, we go out in the golf cart after dinner and look for bunnies. The children maintain a bunny book where nightly bunny totals are recorded. There is a column for “Ciyotes” which was edited this year to include bobcats. 

Neighbor

My first “diabetes in the wild” encounter happened when my next door neighbor came to talk to me about a tree issue affecting both of our yards. She and her husband are part-time Arizona visitors because he still works full time. We’ve always been friendly but have never talked about much except the weather and grandchildren. Sylvia indicated that Jim wasn’t there yet because he was traveling for work. I knew that he was affiliated with a major university in their home state but had never asked for more details. I asked Sylvia about Jim’s profession and she said that he was a teaching professor and practicing physician in the speciality of…. Wait for it! ….Endocrinology!

So for 8-9 years my Type 1 diabetes of 40 years and I have spent the winter months next door to a renowned specialist in diabetes. Similarly he has unknowingly lived next door to a not-so-renown diabetes blogger!

It rained the next couple of days and before I knew it, Jim and Sylvia had left and I didn’t see them again before I returned to Minnesota. Thus I never got to have a celebrity-crush visit with the neighborhood diabetes doctor. I Googled him and learned that he is quite renown on a national basis. I didn’t get a chance to give him one of my blog business cards and I have no idea whether he ever reads patient blogs. My own endocrinologist avoids diabetes social media and does not read the blogs of her patients. On one hand I think doctors benefit from hearing patient voices; on the other hand I know my endo works long hours with insufficient pay and I don’t expect diabetes to be her hobby. If Dr. Jim chooses to read any of my blog, he will learn that I am an educated and involved patient who does her homework and improvises with “her own thing.” It will be up to interpretation whether he sees me as an empowered consumer or a nightmare patient….

Gym Meet-Up #1

I went to my Arizona community gym a few days before returning to Minnesota. A man about my age was the only other person there. We said “Hi” and continued with our workouts. After about 15 minutes, he introduced himself as “Tony” and asked about the Dexcom transmitter on my arm: “Hey, is that thing on your arm for diabetes?” I said yes and indicated that it was a continuous glucose monitor and described what it did. He told me that a year ago he had started working out and changing his diet to try to avoid diabetes which runs rampant in his family. He had lost 43 pounds, gained muscle, and felt energized by his new level of fitness. His doctor was thrilled with the effect on his lab work. I don’t think that Tony had been diagnosed with pre-diabetes but hopefully his hard work will prevent or at least delay diabetes coming into his life.

Gym Meet-Up #2

While Tony and I were speaking, an elderly man (I’m old, but he is older!) came into the gym and started his workout. After Tony returned to his weights, this gentleman came over and pointed to my JDRF tee shirt and said that his wife had been very involved with them. (Thanks to Sara of “Moments of Wonderful” for the shirt.)

A bit teary-eyed he told me that she had died six months ago after 60 years of marriage. He was an engineer by trade and had always helped her take care of her diabetes. She wasn’t good with numbers he explained. She used a pump and CGM which I assume were Medtronic because he said that her “thing” didn’t look like mine. It turns out that Morrie lives next door to one of my friends so I plan on looking him up next year when I’m back in Arizona. I would enjoy hearing more of his story as a caregiver and more about his wife’s journey with diabetes. Morrie indicated that he hadn’t been getting out much since his wife died and how much he enjoyed talking with me. The enjoyment was mutual, but tinged with sadness.

Poppies, bobcats, and diabetes. Wild things.

Winning the Battle with Tandem Occlusion Alarms

Posted on by

I began using the Tandem t:slim X2 in mid-December and wrote a product review in February. At that point I was frustrated with what I called #FakeNews occlusion alarms. I described the situation:

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

I mentioned that I had tried several recommendations from both Tandem reps and t:slim users on Facebook. Because I was using cartridges for more that the recommended 3 days, I began changing them more frequently. Instead of reducing the number of occlusion alarms, more frequent changes with less insulin in the cartridge resulted in more alarms. I tried carrying my pump in a Spibelt and then a Flipbelt as one D-friend recommended. I found the belts uncomfortable for everyday use and was quick to abandon them when I got an occlusion alarm wearing one.

A Tandem tech gave me a call and indicated that he is convinced that these occlusions happen because of temperature changes. He wanted me to start using a Tandem case to protect the pump from temperature changes when it was taken out of my pocket or Spibelt. He promised to send me a case without the clip so that I could carry the pump in my pocket. Meanwhile I started using the dreaded t:clip case which was bulky and ill-balanced and frequently fell off my waistband. I used the case for a week and hated it despite having no occlusion alarms. I took it off for a day hike and immediately had another lunchtime occlusion alarm.

Very quickly I reached the point that I was going to wear the pump the way I wanted to and occlusion alarms be damned. I wasn’t going to use an uncomfortable waist pack. I wasn’t going to use the t:clip case which ruined the elegant size and looks of the pump. I wasn’t going to change the cartridge every 3 days and waste a ton of time and insulin doing so.

Meanwhile I recalled that both Sarah “Sugabetic” and Kerri Sparling had written about a metal clip that could be attached directly to the pump. I reviewed their blogposts and ordered a Nite Ize Hip Clip from Amazon. I was a little spooked about attaching something directly to the pump, but went ahead anyway. For the first time I felt that I finally had a solution to carrying my X2 that would take it out of my pocket but keep the sleek lines of the pump intact.

I started using the Hip Clip on February 15 and made it 17 days before I had an alarm during a mealtime bolus. Although the pump was on my waistband, it looked as though the tubing was bent over on itself. Not exactly kinked but somewhat bent. I straightened the tubing and resumed insulin with no problems. As of today I have made it 32 days with only the one occlusion alarm.

Meanwhile I have not had to use the bulky Tandem case. I have not had to wear a Spibelt or Flipbelt except when I choose to at the gym. I have continued to use each cartridge well past the 3-day recommendation. (I change the infusion set every 2-3 days, just not the cartridge or tubing.) I have been happy wearing the pump on my waistband and been particularly happy that the pump retains it beauty and small size.

I am wearing and using the pump the way I want to wear it and the way I want to use it.

What has been my solution?

  1. I wear the pump with the Hip Clip clipped to my waistband most of the time. I try to make sure that there is no pressure on the tubing to cause it to bend near the pump and tubing connector.
  2. If I carry it in my pocket (which is easy to do because the clip is so small), I make sure that during boluses I keep the tubing near the pump and pigtail straight.

This solution seems to work for me, but will it work for others experiencing occlusion alarms? Are those of us experiencing the alarms having them for the same reason? I can share my profile: low average daily dose of insulin (<20 units), thin-average build, using manually-inserted Comfort Short infusion sets, carrying the pump in pocket with no case, using each cartridge for longer than 3 days. From Facebook discussions I don’t find a lot of overlap with my profile compared to others. I don’t even know what percentage of t:slim and X2 users experience occlusions because discussions about occlusions primarily attract users having the problem. Many Tandem pumpers report having no occlusion alarms. Some pumpers who report occlusion alarms believe that they are really having occlusions and have been helped by switching type of infusion sets. But that is not the case for many of us.

So for now I have learned to live with and mostly avoid occlusion alarms with my Tandem t:slim X2. IMO there is a flaw somewhere in the design of this pump system because I strongly believe that I should be able to carry my pump in my pocket without alarms. Tandem also thinks so because this screenshot of the t:slim X2 webpage shows a pumper pulling an uncased pump out of her pocket.

On March 8, 2017 Tandem announced that it will soon implement infusion sets and cartridges using a newly-designed tubing connector. The news release states:  “The new design reduces the time required to fill the infusion set tubing by approximately 30 seconds and reduces the amount of insulin used in the process by approximately four and a half units.” There is no mention that the t:lock Connector will reduce false occlusion alarms and it probably won’t, but a girl can always keep her fingers crossed….

In summary, I seem to have figured out how to avoid occlusion alarms on my Tandem pump. Maybe it is the tubing; maybe it is the temperature issue. Whatever. For the most part I’m just not thinking about it. And that’s a good thing.

*******

Please note that this post only reflects my personal experiences. Be sure to talk with a Tandem representative and read as many reviews as possible if you are in the market for a new pump.

Fighting the Diabetes Chocolate Demons

Posted on by

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A  reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.

Laddie