A Diabetes Data Machine

Posted on October 26, 2016 by Laddie

Laddie_Head Square I am currently involved in a couple of projects that require tracking my diabetes data. The good part is that some of the data is automatically logged with little or no input from me. The bad part is that I am using 3 different apps on my phone and must enter food information twice. The good part is that I have learned new things about my diabetes. The bad part is that I am uber-involved in the input of data and not paying much attention to the output.

Big Blue Test

Most of you are familiar with the Big Blue Test sponsored by the Diabetes Hands Foundation. Every test logged between October 14 and November 14 will result in a $3 donation to support people with diabetes. Three charities will receive $5000: Diabetes Sisters, We Are Diabetes, and the Riverside Community Diabetes Collaborative.

The Big Blue Test is by far the easiest of my current data projects. I use the app on my phone and it’s a quick 30 seconds to record my exercise. Although participation is easy, I am no Big Blue Test slouch. Yesterday I managed to input 5 (!) tests. Dog walk. Gym session. Rake. Rake again. Dog walk. That translates into a $15 donation for diabetes.

If you are participating in the Big Blue Test, keep up the good work. If you are not involved, check out this link to learn more. It’s not just walking and running. You can include housework, yard work, weight work, and dancing. You can help a couple of diabetes groups while receiving the physical and mental benefits of moving your body. Sounds like a win for all.

mySugr Consulting

I continue to be a beta-tester for the mySugr consulting module. As outlined in my September post, mySugr is launching a feature to allow virtual coaching from Gary Scheiner and the team at Integrated Diabetes Services. You can learn more about the program here and here.

Today I am not addressing the coaching experience except to say that Gary Scheiner does a better job of understanding my D-data than I do. Instead I am writing to share that amazingly I am still logging after 3 months!

I am still learning shortcuts for entering my data and have reduced the number of data points I am tracking. I continue to enter food and carb counts, but don’t classify the food anymore as vegetable, meat, etc. Similarly I am not distinguishing between food and correction bolus amounts, just total insulin. What I like about mySugr is the ability to customize my logbook to show only the data points that are important to me and to list them in an order that makes sense to me.

My newest “cool” discovery about mySugr is that if I use the workout app on my Apple Watch, it automatically transfers the activity to mySugr. Another diabetes/life datapoint automatically logged!

Glu and T1D Exchange

Glu is the patient community of the T1D Exchange and provides an easy way to participate in research relating to type 1 diabetes. I am currently part of a study about blood sugar results and treatment satisfaction for T1 adults using pumps or multiple daily injections.

The logging requirements of this study are not difficult because most of my data goes into Tidepool’s Blip. If you don’t know about Tidepool and their innovative diabetes apps, check it out here. I download my Animas pump and Freestyle meters once a week. My Dexcom CGM automatically links with the Blip Notes app on my iPhone. My only daily responsibility is to create a Blip note whenever I eat. I click on #food and record the meal with the carb count. To make it easy, I copy and paste the meal info just entered into mySugr. Takes 30 seconds or less.

Where to from here?

The Big Blue Test ends November 14.

The mySugr logging has no end date and I’ll keep at it a while longer. But not forever.

The T1D Exchange study lasts 4 weeks.

I have learned a lot from this intensive logging. I tend to eat a little bit all of the time and now have visual proof that my BG is better when I eat more at meals and reduce snacking. I have done some basal testing and am seeing better CGM tracings. Better basals allow for less snacking.

But I am tired of logging. My head is exploding with numbers and my brain is drowning in data. I am thinking about diabetes too much and will be happy to quit recording my life in a couple of weeks. Being a diabetes data machine is fine for a while, but for me the benefit gets lost when I do it too long. For sure I will quit before Thanksgiving because there is no way I want to start the holiday season being accountable for my food decisions….

Thoughts on Patient Empowerment

Posted on October 18, 2016 by Laddie

Laddie_Head Square I recently read two articles by Dr. Niran S. Al-Agba, a pediatrician in Washington State and blogger at MommyDoc. I discovered her posts through KevinMD.com and have added her blog to my Feedly list. As a grandmother with 40 years of Type 1 diabetes, you might wonder why I plan to follow the writings of this young pediatrician. I think it is because her thoughtful views on the roles of patients and physicians in our healthcare system (or lack thereof?) give voice to some of my opinions and experiences.

The first article I read was titled “Building Better Metrics: Focus on Patient Empowerment.” Mid-article Dr. Al-Agba writes something that many of us who use insulin believe is essential: “Patient-centered care is often talked about as a virtue worthwhile to attain because it puts them at the heart of their healthcare team. Empowerment goes one step further by actually giving power and authority to the patient.”

She goes on to share the characteristics of an “empowered activated patient” as listed by ENOPE (European Network on Patient Empowerment):

Understands their health condition and its effect on their body.
Feels able to participate in decision-making with their healthcare professionals.
Feels able to make informed choices about treatment.
Understands the need to make necessary changes to their lifestyle for managing their condition.
Is able to challenge and ask questions of the healthcare professionals providing their care.
Takes responsibility for their health and actively seeks care only when necessary.
Actively seeks out, evaluates and makes use of information.

I don’t know about you, but I believe this list describes me and many of us living with diabetes. At least most of the time.

The second article by Dr. Al-Agba is titled “Building Better Metrics: Patient Satisfaction Can Be Done Right!” Building on the first article, she writes that physicians are often more comfortable with “standards of care” and need to become more comfortable in the role of giving information, sharing options, and empowering patients to take more control. She goes on to discuss that sometimes that means disagreeing with a patient’s decision while respecting the right of the patient to make that decision.

That idea really hit home for me based on a recent experience with a new physician. My longtime internist retired this summer and suggested that I follow one of his younger partners to a nearby clinic that is part of a large provider system. Until now all of my doctors have been part of independent clinics. Such practices are starting to be an anomaly in big cities and I was not opposed to moving into a “system.” I knew that it was doctor-patient-respect probably a good idea to narrow my network of doctors as I look to future health insurance and Medicare restrictions.

In August I had my annual physical with the new internist. He asked several questions and for the most part seemed to accept my answers. Many queries seemed to be coming from a computer-generated checklist which I suspect was labeled “Old Lady with Diabetes.” I had to fight the urge to say “Hey, that’s not me!”–because of course that is me. Our only area of conflict was over statins which I have resisted up until now. In May I wrote about my previous doctor’s support for my decision to avoid that class of drugs. I felt a bit bullied by the new doctor but given that it was his first week in the new system, our first meeting, and already an overly long appointment, I decided to let it go. And I agreed to give statins a try.

Two months later I am experiencing clear side effects from the statin drug and have chosen to stop taking it. One thing that I love about my new medical system is a complete online health record along with the ability to send secure messages to my health team. I was able to share my statin decision without talking to anyone or feeling that I was hiding something from the new medical team. I wrote several drafts of the email and believe that I ended up with a respectful but confident and empowered message.

I did not get a reply to the message nor did I expect one. I am sure that it will be a item of discussion next time I see this doctor. I am very comfortable with the idea that he can strongly disagree with my decision. However, I need to feel that he respects my right to make that decision. If not, I will look for a new internist. However, based on most of the August appointment, I am optimistic that as we get to know each other, we will do just fine. Fingers crossed.

Back to the Future: Dexcom G4 Share and Apple Watch

Posted on October 11, 2016 by Laddie

In the last 10 days, my diabetes technology world has changed. On one hand I have reverted to an older tech platform. On the other hand I have zoomed into the future with a modern and cool-for-a-64-year-old-woman device.

Stepping Back: After getting my free(!) upgrade to the Dexcom G5 last fall, I was lucky to be left with an unused G4 transmitter. I didn’t start using the G5 until March when my previous G4 transmitter passed its 1-year anniversary. It was still working fine, but I abandoned it to transition to the G5 platform. A bit wasteful, but gee whiz, that transmitter was never going to die! I used two G5 transmitters and for the most part was happy with G5.

That unused G4 transmitter did not disappear and kept sending “Use Me! Use Me!” messages to my brain inbox. If I were not moving to Medicare and no CGM coverage in 6 months, I probably would have used my “privileged diabetes patient” status to stay with G5 and give the unused G4 transmitter to a needy DOC friend.

Last weekend my second G5 transmitter timed out and I bit the bullet to go back to G4. My CGM warranty expired in early September and I was able to order a new G4 Share receiver. Although it had only been 6+ months since I had last used Share, I panicked as it seemed totally foreign to me. Also because I am using the mySugr logbook, I needed to be sure that my CGM information would continue to sync to the app. Miraculously I figured everything out and it is working correctly.

Onward to the Future: Earlier this fall I decided that I would use my #firstworldprivilege to order an Apple Watch so that I could see my current blood sugar just by raising my wrist. Please remember that I started my diabetes career in the days of urine testing and things like this are magical to me. d-tech-privilege-circle

My Apple Watch 2 arrived last week. I have not worn a wristwatch in 12+ years since I got my first insulin pump, aka pocket watch. It wasn’t terribly difficult to add the Share app to the watch and it works okay. Unfortunately it cannot be used as a watch face “complication” like the G5 app. There is another app called “Watch Sugar” that allows me to add the Dexcom number to my watch face, but it is so time-delayed that I don’t find it helpful.

Basically I leave the Dexcom Share app open on the watch all of the time and it is usually what I see first when I raise my wrist. When Share is not the wake-up screen, it is easy to find the app in the dashboard and restore it. My difficulty with this whole set-up is that occasionally it just doesn’t work. If I am using other Bluetooth devices such as headphones or a speaker, I think the phone gets confused and occasionally loses the signal from the Dexcom receiver. There are also user-error problems such as leaving the receiver upstairs or closing out the Share app on my phone.

Clash of the Past and Future: The bad part about these D-tech changes is that now I have two more devices to carry, coordinate, and charge than I did two weeks ago. The G4 requires a receiver and of course the watch is added. The blood glucose number that I see on my wrist starts with the transmitter beaming info to the receiver which communicates with the phone that sends it to the watch. There is definitely some mental fatigue and data overload with this set-up. At the same time I love not having to reach into my pocket to retrieve Dexcom data.

Life is good. It ~~might~~ would be nice if I didn’t diabetes but that horse left the barn a long time ago. So today I give thanks for access to technology that make my life with diabetes a little bit easier and a lot more interesting. 😀

Countdown to Medicare with Type 1 Diabetes: 6 Months / The Journey

Posted on October 3, 2016 by Laddie

Laddie_Head Square I occasionally have readers who contact me by email rather than leave comments on my blogposts. Kathy K from New York is one of those readers. She and I have an amazingly number of things in common. She was diagnosed with Type 1 diabetes in 1974 at age 23 after recently graduating from school and getting married. I was diagnosed in 1976 at age 24 after recently graduating from school and getting married. She has 2 children and 5 grandchildren. I have 2 children and 5 grandchildren. Do you see a pattern here?

Kathy is a few steps ahead of me in the Medicare process. Today she has written about some of her experiences as a newcomer to Medicare. There is no doubt that she knows “diabetes.” In addition to living with Type 1, she is a retired RN and BSN Certified Diabetes Educator.

Welcome, Kathy K from New York, and I hope that this is the first of many guest posts!

*****

The Journey that is Medicare

kathy-krieg-headshot Thank goodness that I found Laddie. I was fuming with frustration trying to get my first prescriptions, pump supplies and strips through Medicare. Even though Laddie is not quite there yet, her blog regarding her journey toward Medicare eligibility sounded exactly like mine.

The psychological profile of most persons with Type 1 diabetes who use an insulin pump probably include such traits as independence, controlling, problem solving and motivated. (well maybe that’s just me!) I have lived with Type 1 diabetes for 42 years and thankfully had excellent health insurance and a wonderful physician willing to let me “run the show”

What a shock to realize that Medicare regulations takes all that away. You all know how we make sure we have enough pump supplies on hand, strips to cover frequent testing and insulin. I am here to tell you to be sure to have enough on hand to withstand ins and outs of new insurance rules.

Some of the biggies are Medicare does not cover CGM. Only 100 test strips are allowed if you take insulin and calculating your individual costs for medications is an accounting nightmare! But wait, there’s more to share. Do not take any of those restrictions at face value. My motto “Never take NO for an answer.” As many people that you call looking for help, that’s as many different answers you can get for the very same question.

Here is what I found out along my journey. I am now knee deep in the muddy waters of Medicare coverage. Medicare has been approving some CGMs. A very specific appeal process needs to be followed but even courts have directed Medicare to approve of these devices. With that said, contact your supplier for help. They will probably offer you a decreased price for persons who have to pay out of pocket. My experience with Medtronic countdown-to-medicare-6-months is that before you order supplies, you have to sign a disclaimer that states: 1) bill Medicare the full price and you will proceed with the appeals process to get the bill for $473.00 for a box of 5 sensors. If the appeal fails, you are responsible for the entire amount. Or 2) I want the sensors but will pay a decreased price up front now and cannot then bill Medicare and go through the appeals process. This price is about 45% off or approximately $260.

Another fact to keep in mind for those on an insulin pump, the insulin used in the infusion device is covered under Part B of your Medicare health insurance. Do not back down on this one. Find a pharmacy that has experience billing this way and use them. For me that was Walgreens. My Walmart pharmacist looked at me like I had two heads when when I was trying to explain this. I have a Medicare supplement policy that picks up all costs that are not paid by Medicare. So my cost $0!! Yep, that’s right—$0 for my Humalog insulin. My infusion sets and reservoirs are also covered under this same policy. That is one of my biggest successes in this journey. A new order for pump supplies, for me reservoirs and infusion sets, cannot be started until you only have 5 sets left!!! or 81 days from the previous order.

Another change I encountered is that I can no longer get my test strips from the pump company. There is a bidding process for providers in some areas and whomever Medicare chooses as the winner of the bid is the type of strips and the place where you need get them. Additionally, you will only be allowed 100 strips per month. Not nearly enough for me and probably you too! Once again Medicare also known as CMS, has a process for appeal. You need to supply a log of your tests and a physician note documenting the need. I have yet to submit for strips. I am not due to reorder yet.

Lastly, at least for now, is drug coverage. This is the biggest stumbling block for me. I tried the mail order supplier the insurance company suggested. I am quite dissatisfied with this company and that is another long story. I am finding it difficult to follow how much each of my medications cost and how far down the line to the donut hole I am. Hopefully, that’s a learning curve I will master soon.

DISCLAIMER: Please do your own research into your specific state and insurance companies regulations. This is just my experience in the journey that is Medicare.

ONE MORE THING: I have an additional psychological trait. I am so stubborn with a 2 year-old’s “ME DO IT!” attitude. Hummmm… A 2 year-old battles Medicare! Stay tuned.