Introducing Elle and Coach

Posted on September 28, 2015 by Laddie

Elle & Coach by Stefany Shaheen is the story of Shaheen’s oldest daughter Elle (pronounced “Ellie”) who was diagnosed with Type 1 diabetes at the age of 8. This book was recently published in August and I am pleased to have been given a complimentary copy along with the opportunity to share my views of the book. As always, the opinions expressed are my own.

Both the front and back covers of Elle & Coach show a lovely young women along with a handsome yellow labrador retriever. The title of the book mentions “Coach” and the subtitle is “Diabetes, the Fight for My Daughter’s Life, and the Dog Who Changed Everything.” So why doesn’t THE DOG make an appearance until halfway through the book?!?!

The answer to that question is why Elle & Coach is an educational, and inspiring book. For those of us in the diabetes community, the story of Elle’s Type 1 diagnosis is a familiar one with injections, fingersticks, hospital/doctor visits, and wild swings in blood sugar. We have lived with the unrelenting fear, stress, and blame. Through the early chapters of the book Shaheen does a good job of describing the physical and emotional impact of a Type 1 diabetes diagnosis on a child, the parents, and the entire family. We know the story.

If you have difficulty explaining to your relatives and friends the impact of diabetes on your life and that of your family, hand them this book. The story (and of course the beautiful dog!) is compelling enough to keep outsiders reading. They will learn the basics of Type 1 diabetes, the unending daily tasks required, the longterm impact of the disease, the role of technology, the eternal hope for a cure, and the importance of advocacy at both a local and national level. Admittedly a Type-A mother, Shaheen is not a whiner and she has spent the last eight years working to help people and families impacted by diabetes and other chronic conditions. Similarly, Elle has been a diabetes advocate from a young age and has shared her story with people from community leaders to the President of the United States.

Now enter THE DOG! Elle and Shaheen learned about Diabetic Alert Dogs (DAD’s) at the 2011 JDRF Children’s Congress where they were witnesses to a young girl and her DAD in action. Initially Elle was not interested in a companion dog, but her mother was inspired to begin researching the use of medic-alert dogs with diabetes. The rest is history as Coach and Elle became a team in the spring of 2013.

The second half of the book describes the magical ability of certain dogs to sense blood sugar changes in humans and the journey of the Shaheen family to obtain a diabetic alert dog for Elle. The beginning of Elle and Coach’s partnership is fascinating and heart-warming. Right away Coach alerted properly to Elle’s out-of-range blood sugars and very quickly began easing the burden of diabetes on the entire family. There were a few bumps in the road and these occurred because although the dog was superbly trained, his humans had a lot of learn!

If you are interested in a diabetic alert dog, Elle & Coach is a good starting point to learn about how to obtain a DAD and some of the adjustments required to fit such a dog into your world. Shaheen wisely emphasizes the need to do your homework to determine if an alert dog is appropriate for you and the responsibilities of living with such a dog. Expense, public access issues, the need for ongoing training, and the 24/7/365 nature of the handler/dog relationship are some of the topics addressed.

I wore many hats as I read this book. I have Type 1 diabetes and know the intimate details of living with this challenging condition. I am a mother and grandmother who gives daily thanks that none of my children and grandchildren have been diagnosed with diabetes. Elle & Coach reinforces my belief that most of the time it is easier being the person with diabetes as opposed to the parents and people who love us:-) I am a dog-lover and the owner of Abby the Black Lab who at age 9 does not react to my blood sugars but might have been trainable at a younger age. In summary, all of my D-roles enjoyed this book and think that you should find a spot in your diabetes library for this story.

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Elle & Coach is available in hardcover, e-book, and audiobook and is available at major booksellers. Click here for more details.

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If you’d like to follow Elle and Coach online:

www.elleandcoach.com | @elleandcoach | www.facebook.com/ElleandCoach

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If you’d like to read more blogposts about diabetes alert dogs, check out:

https://testguessandgo.com/2014/07/10/ann-wallen/

http://blackdogsrule.com

http://tarraandduchess.blogspot.com

Considering the Dexcom G5 Upgrade

Posted on September 21, 2015 by Laddie

For the first time in my diabetes tech history, I am in the golden upgrade zone. The FDA approval of the Dexcom G5™ Mobile CGM System was announced the same week that my G4 warranty expired. According to Dexcom’s upgrade program, I am entitled to a free upgrade to the G5 system if I purchased my G4 Platinum System with Share before the G5 begins shipping.

It was a no-brainer to order my new G4 system as soon as possible because I never want to run the risk of out-of-warranty equipment failing. Due to good insurance and the CGM rep at Edgepark (yes, I always have great service from Edgepark unlike so many others who report horror stories), my new CGM arrived within a week. At this point I began doing my homework about the upgrade options.

As I learned more about the G5 system, it quickly became apparent that it was not a slam-dunk decision to upgrade. I’ll discuss a few of my concerns below.

Pros of Upgrading

One Less Device: I joke about diabetic pants and never buy clothes without pockets. I currently carry an insulin pump, glucose tabs, Fitbit, Dexcom receiver, occasionally car keys, and often my phone. The possibility of eliminating the Dex receiver is appealing.

Optional Receiver: If I don’t like using my iPhone as my receiver, I can always use the G4 Share receiver updated with the G5 software.

Sunlight: The G4 receiver with its black background is difficult to read in bright sunlight and the red color used for lows is almost invisible. My Animas Vibe pump is even worse and the text is totally unreadable in bright light. My phone has a better display and is easy to see in all light conditions. (Note: Now that I have the Share receiver, I have the option of using my phone without upgrading to the G5, but I would have to carry the receiver.) Because the G5 software upgrade will result in a new receiver display with a white background, maybe it will be easier to read in the sun than the current G4 device.

“Free” G4 transmitter: Because my current G4 system is working, I have not had to Golden Upgrade open the new G4 transmitter. I do not have to return this transmitter when I get the G5 transmitters and can keep it as a back-up to use with my current non-Share receiver. This is appealing as I get close to Medicare with no coverage for CGMS.

The Price is Right: The upgrade is free!

Cons of Upgrading

Expiration of G5 transmitters: My understanding is that the G5 transmitters will last 3 months and drop dead after 108 days (90 days plus an 18-day grace period). If you have good insurance coverage for CGMS, this is not a big deal. With no CGM coverage, the loss of an extended life for a transmitter can be a big deal.

Bigger Transmitter: The G5 transmitter has built-in Bluetooth and is bigger than the current slim G4 receiver. It is about the size of the first generation G4 transmitter.

Not Compatible with Animas Vibe: Although I rarely use my Vibe as a Dex receiver, I like having the option especially when I want a waterproof receiver at the pool or beach. Because Dex transmitters cannot be turned off, it’s expensive to use a G4 and G5 transmitter concurrently. I assume the lack of G5 compatibly will also extend to the new Tandem t:slim G4 combo.

Disadvantages of Phone Receiver: My phone is much larger than the Dex receiver and doesn’t fit into many of my pockets. Although I use my phone a lot, I do not keep it with me day and night. I have no idea whether the sounds and vibrations of CGM alarms on the phone will be adequate. It will take more button pushes to access BG data on my phone compared to the one-button push of the Dex receiver.

Other Thoughts

Medicare: I currently have excellent CGM coverage with private insurance. When I move to Medicare in April 2017, I will have to self-fund a CGM unless Medicare regulations change. My guess is that a G4 transmitter with the Animas Vibe or the Tandem t:slim G4 will be the least expensive option because no other receiver is required. As discussed in my April 2015 review of the Vibe, I am not a fan of the Dexcom integration into the Vibe. But it works and is an option. As far as I know, both pumps will continue to use the outdated G4 software instead of the 505 update.

It is possible that under Medicare the G5 will be an equally cost-effective device if I do not need to purchase a new receiver every year. The G5 was approved by the FDA with the requirement that a receiver be provided to new patients. Is that a one-time requirement or will G5 users be required to purchase a new receiver every year when the old one (maybe unused) goes out of warranty?

Staying Current: New CGM devices are gaining FDA approval at a much faster pace than in the past. It is likely that both the G4 and G5 will be outdated in a few years and maybe my current decision is just not a big deal. With the Animas Vibe and t:slim G4 tied to the G4, my guess is that the original G4 transmitter will be available for many years to come. The G5 may be a short-lived device on the way to the G6 which promises improved accuracy and reliability along with mobile capabilities. Another consideration is what the new Dexcom/Google collaboration will bring to the table.

Decision Deadline: The Dexcom website indicates that “Upgrade offers are available until 60 days after the first G5 Mobile shipment.” However, I learned that because I purchased my G4 Share system through a distributor (Edgepark), I have only 30 days from the date of shipment to upgrade. I am looking at an upgrade deadline of early October rather than late November. Good thing I asked!

My Decision

I have decided to upgrade and will be sent my G5 transmitters in October. At this point I will upgrade my Share receiver to the G5 software. For the most part I am choosing to abandon my Animas Vibe as a receiver and become more hip by never again being separated from my phone. Frankly I don’t know whether this is the right or wrong decision or if it even matters. Dexcom is making the change incredibly easy and I have just decided to go with the newest kid on the block. If nothing else, I am thankful for having the #firstworldproblem of choosing which CGM system to use. I promise to let you know how it goes.

The Dexcom in Poetry

Posted on September 18, 2015 by Laddie

Laddie_Head Square

You are probably familiar with the poem “There was a Little Girl” by Henry Wadsworth Longfellow (1807-1882). The first verse goes as follows:

THERE was a little girl,

And she had a little curl

Right in the middle of her forehead.

When she was good

She was very, very good,

And when she was bad she was horrid.

When I started this post, my aim was to compare my Dexcom G4 CGM to the little girl. I am a huge fan of my CGM and most of the time it is a trustworthy and reliable device. But occasionally it shrieks, spews out bad results, and stomps its little sensor feet just to remind me that it is imperfect and I shouldn’t expect constant excellence.

Screaming Girl

The more I looked at this photo, the more I began to realize that I was seeing my own reflection rather than my Dexcom. I can be very good at making optimal decisions when it comes to things like diet, exercise, and insulin. The “Good Me” takes the normal ups and downs of Type 1 in stride and spends a lot of time in range. Unfortunately the “Horrid Me” takes over at other times and makes bad decisions amidst frustration, self-criticism, and just not giving a damn. I feel helpless with my BG numbers and want to scream, throw things, and live a self-destructive life eating chocolate-covered donuts.

Dexcom: The Very Good: In mid-August I had severe bronchitis and was prescribed oral steroids. As is typical with steroids, I experienced a huge rise in blood sugars and at one point was taking 5 (!) times my pre-steroid dose of insulin. Although I wasn’t seeing low blood sugars, I was worried about sleeping with such massive amounts of insulin on board. Adding to my vulnerability was the fact that my husband was out of the country on a business trip.

During the five days of steroids, my Dex G4 was as accurate as I have ever experienced as it tracked my blood sugars in a range from below 100 to the high 400’s. Most importantly it provided a safety net that if my BG tanked at night, it would repeatedly alarm until I responded. Without the CGM, I would have been terrified to be alone and probably would have needed to set hourly alarms to check my BG day and night.

Dexcom: The Very Bad: Ten days ago I started a new sensor. I know that the first 24 hours of any sensor can be wonky, but this sensor site was the worst. Double up arrows in the high 200’s followed by double down arrows in the 40’s when my calibrated BG was between 100 and 125. Vibrations and alarms were driving me crazy. I finally turned off the receiver to give it a few hours to think about how it could improve. When I turned it back on, I continued to receive multiple alerts—some accurate and others absolutely unwarranted. Rather than throw the receiver out the window, I finally just turned off all of the alerts except for the low threshold. Eventually the sensor settled into reasonably good results.

Besides the occasional bad results of a new sensor, another thing that drives me crazy about the G4 is that after alerting me to a low, it continues to alarm long after my BG has returned to normal. Unfortunately that is a characteristic of the interstitial fluid that the CGM measures and I am not sure that there is a solution for this. But it would be nice if the G4 didn’t alert for a low when your BG is moving up:-)

Living with a Dexcom: The Good Me and the Bad Me: Most of the time I live in harmony with my Dexcom. I do a good job of knowing when to trust it and how to optimally use the information it provides. One thing that I sometimes ignore is that the CGM is only as good as how I react to it. If things are rough in my diabetes life, I have the power to evaluate how I am using my CGM and make changes if necessary.

A lot of my recent frustrations with the Dex are related to alarm fatigue and data overload. There is not much that I can do to prevent a lousy sensor start or change the fact that interstitial fluid behaves differently than blood sugar. The Bad Me overreacts to sensor data and gets stressed by out-of-range BG numbers. I start making too many corrections that often lead to more erratic numbers. I start dismissing alerts without even looking at the receiver. I rage bolus to prevent highs. I eat junk food despite the inevitable cr*p results. I basically get burned out by diabetes.

The Good Me remembers that I am in charge of most of the settings on my CGM. After turning off most of the alerts last week, I lived with only the low alert of 70 for several days. I was amazed at how much less stress I experienced in relation to diabetes. I slept better and in general had improved BG numbers per my meter. I eventually turned back on the high alert, but at a threshold of 200 rather than 150. I didn’t change my personal goals for my BG range; I just reduced the Dexcom intrusions into my life. I look at my CGM often enough that except for the protection from undetected lows, maybe I am better off catching the changes myself rather than getting constant alarms for ups and downs. I have kept the rise and fall rate alerts turned off and have not missed them.

Summary: If you have followed my blog for a while, you know that I was diagnosed long before home BG monitoring, insulin pumps, and even multiple daily injections. On one hand I work hard to have access to the latest and greatest technology. There is no doubt that my life with diabetes has been enhanced with the use of a pump and a CGM. At the same time I need to remember that beeps, bells, and whistles don’t guarantee good blood glucose numbers or mental health.

Currently I have turned off many of the Dexcom alarms and that is working for me. There is no guarantee that this will work for next week or next month. There is certainly no guarantee that it will work for you. But the only way to make things better when diabetes seems to be winning the battle is to try something new. Good or bad, it’s worth a try.

Please note that as I got this post ready to publish, my new Dexcom sensor alerted to a BG of 53. Two meter tests of 100 and 106 confirmed my BG to be in range. Argh!!!

Pollyanna Faces Diabetes

Posted on September 11, 2015 by Laddie

I have been accused of being “Pollyanna” when it comes to diabetes. I rarely complain about my dysfunctional pancreas and I am a firm believer that I only get one chance at life and I am not going to waste my time complaining. But sometimes I have to admit that DIABETES IS HARD.

I golf once or twice a week during my summers in Minnesota. Most of the time I play right after breakfast in the relative coolness of the morning. My home course is hilly and I am always tired when I finish my 18-hole walk with my clubs on a pushcart. Because I am in a rut and usually play the same course at the same time of day, I have for the most part figured out how to manage diabetes. Does that mean I never have lows or highs? Absolutely not. If my blood sugar is within a reasonable range before beginning play, does this mean I can get through a round without eating a couple of glucose tabs and maybe having a small snack? Nope, can’t do that either. But by planning my breakfast food and bolus insulin, using temporary basals, relying on my Dexcom CGM and an occasional fingerstick, I can play 18 holes with only minor blood sugar annoyances.

My standards for “diabetes success” on the golf course are low. Success means finishing the round without keeling over, needing paramedics, or getting so low that I can’t read the scorecard. Success means that my errant shots are the result of bad swings not the inability to control arms and legs wobbly from a hypo. Success means racking up lots of steps for the current Fitbit challenge. Success means that I enjoy my round and my playing partners don’t have to ask me if I am okay. Success means occasionally forgetting about diabetes.

On Labor Day my son invited my husband and me to join him for 18 holes of golf at his home course. He plays at Hazeltine National Golf Club which is near his home in a western suburb of Minneapolis. Hazeltine is a championship venue which has hosted events such as the U.S. Open and the PGA Championship and will be the site of the Ryder Cup in 2016. The first question you should ask is “Why in the world is a hacker like me playing a course like that?” The answer is “Because I can and because my son invited me!” I play from the ladies tees which are a mile ahead of the championship tees and amazingly I don’t score that much higher than on my home course. I also decided a long time ago that I should have fun playing golf whether I shoot a good round or not. For the most part I succeed at that.

What I have never mastered at this course is diabetes. Hazeltine is a long and hard course for me to walk. I’ve played there twice and both times have played after lunch which is not my “normal” golf time. I’ve never needed paramedics there, so why am I complaining? When I walked up the 9th hole on Monday feeling incredibly low and having already finished one 10-count roll of glucose tabs, I had a flashback to last year when at the same point on the course I was exhausted and desperately low. (I’ve only played Hazeltine twice. I am not like my husband who can remember every round of golf he has played in the last 50 years. But I am someone with diabetes who can remember every severe low BG since 1976.)

Neither this year nor last did I complain to anyone. Both times I was able to keep playing using the reserve glucose tabs and snacks that I keep in my golf bag. I know that I should tell my husband when I am low, but I’m too ~~stupid~~ tough for that.

But this year was very different from last year. As I walked up the 9th fairway, I was mentally devastated with how sad I was and how lonely my diabetes is. What would it be like to play golf or hike or do anything and not experience low blood sugar? Why is my life a constant math equation with seemingly no reliable solution? Why do I have to deal with this and no one else does? Why can’t I figure it out? Why does it have to be so hard?

Why? Because it is hard. TYPE 1 DIABETES IS HARD. I know that and so do you.

There I’ve said it and I’ll say it again. TYPE 1 DIABETES IS HARD. Now I will quit whining and return to the previously scheduled program of Pollyanna….

On Tuesday of this week Riva Greenberg of The Huffington Post shared her experiences with the hidden difficulties and loneliness of living with Type 1 diabetes. If you haven’t read this article, please check it out: The Invisibility of Type 1 Diabetes. Riva and I are close in age and she has had Type 1 for 43 years compared to my 39 years. Riva is usually upbeat about living with diabetes and her post is an insightful peek at what goes through Pollyanna’s mind when the “Glad Game” just isn’t enough to keep her smiling amidst the highs and lows of diabetes.