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.

*****

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.

Can Advocacy Take a Vacation?

Posted on July 27, 2015 by Laddie

Laddie_Head Square I haven’t been writing much these days. I was definitely burned out after Diabetes Blog Week but was on the exit ramp before that. I began blogging 2+ years ago and although I am proud of what I have shared about my life with Type 1 and my opinions about diabetes issues, I am starting to feel that I have just about said it all. I am definitely tired of the work of writing and creating graphics for my posts. At the same time I don’t think that I am ready to quit. In my first post for Test Guess and Go, I wrote:

The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes…. And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.

Nothing in that statement has changed since 2013. My Medicare worries used to be about lack of CGM coverage. In mid-2015 I know people with diabetes on Medicare who are no longer able to obtain test strips for name-brand BG meters. I know several women with Type 1 who have had difficulty getting pump supplies on a timely basis. Finding a provider for Part B insulin for pumps continues to be a common difficulty.

Today I am about 20 months away from the transition to Medicare. It is too soon to evaluate my choices about Supplemental and Advantage plans. It is too soon to start hoarding Dexcom sensors and Freestyle test strips because of limited expiration dates. I am trying to purchase pump supplies on a timely basis, but it seems unwise to stock too many supplies because I will be buying a new pump in the fall of 2016.

My hope is to hang on as an active blogger in order to chronicle the journey of moving from a lifetime of excellent private insurance to the scary unknowns of Medicare. I am proud of what has been accomplished at Test Guess and Go by my writing and that of Sue from Pennsylvania and Sue from New York. I don’t want to see Test Guess and Go fade into oblivion.

Lately I have felt guilty that by not writing and actively engaging in diabetes social media that I am not doing “my job.” I am failing in my public persona as a diabetes advocate. I know that I am being too hard on myself and that starting a blog is not a life contract to do it forever.

Advocacy things that I have done in 2015:

I have followed through with every email from JDRF urging me to contact my elected representatives on diabetes-centric legislation. I participated in the campaign for the Special Diabetes Program which was successfully renewed for two years in April with $150 million allocated for diabetes research.

I have contacted my Senators and House Representative to support S. 804: Medicare CGM Access Act of 2015 and H.R. 1427: Medicare CGM Access Act of 2015. Like many people I have been frustrated that this is the 3rd generation of these bills and they are still rated by GovTrack as having 0-1% chance of being enacted. Even if you contacted your elected representatives for the 2013 and 2014 bills, please do it again for the bills of the current legislative session. Remember that Medicare policy trickles down to all insurance and even if you are not age 65, this coverage is crucial for people of all ages with diabetes. It is super easy to do if you go to the JDRF CGM Coverage by Medicare page.

I have joined DPAC (Diabetes Patient Advocacy Coalition). DPAC was co-founded by Bennet Dunlap and Christel Marchand Aprigliano. The purpose of the organization is to unify and streamline diabetes advocacy and make it easy for each one of us to have our voice heard by U.S. decision makers. If you are not yet a member of this group, please read this blogpost by Christel at theperfectD and this post by Sue at Diabetes Ramblings. Then follow the links to join DPAC.

I was fairly active through the first half of 2015 and advocated for DOC programs such as Spare a Rose, Save a Child. I attended the Unconference and generally immersed myself in diabetes stuff.

After writing but not publishing this post, I wrote a blogpost to my daughters-in-law urging them to learn the symptoms of Type 1 diabetes and share the stories of Kycie and David, two young children who recently lost their lives as a result of Type 1 diabetes.

Advocacy things that I have not done in 2015:

I have rarely used my blog to educate and encourage others to advocate for important diabetes issues.

I have continued to read every blog in my blogroll, but in recent months I have left few comments and feel bad about that. Many times I have started a comment and then deleted it after becoming lazy and paralyzed in my thoughts halfway through.

I have been mostly absent from Twitter and #DSMA and #DCDE TweetChats. Obviously it’s not a requirement to participate in things like this, but it is a sign of support to others in the DOC. In general I am not a huge Twitter person and I may start using my age as an excuse to maintain a minimal Twitter presence.

I stayed on the sidelines for the CrossFit issue. On one hand that is good because I didn’t say something stupid and insensitive. On the other hand, I didn’t rush to support the heartfelt posts of my Type 2 friends including Kate Cornell, Sue Rericha and Bea Sparks. A “Like” on Facebook isn’t a sufficient response to seeing wounds of blame, shame, and anger re-opened in the diabetes community.

Moving forward?

For now I am on summer vacation. I’m not mad or sad. You don’t need to comment and tell me how wonderful I am or give me permission to be a bum. I’m just tired of writing and being overly immersed in diabetes social media and I don’t want to feel guilty about that. Vacation Beach I’m still reading blogs and keeping up with Facebook. I’m supporting my friends doing runs and bike rides to raise money for diabetes. I’m still here and for better or worse, I still have diabetes.

Fortunately my blogging malaise has not been accompanied by personal burn-out. My diabetes is difficult these days, but I get up every morning with the optimism that I’ll do better today than yesterday with blood sugars. I’ve ordered a mysugr T-shirt and will wear it proudly while battling my D-monster “Glukomutant.” I’ve been walking a ton (#Fitbit) and working with a personal trainer. I’ve cleaned closets, played golf, read a lot of books, and done some much-needed yard work. I’ve been super-Grandma and spent a lot of time with my four grandchildren.

I have many things to write about, but I don’t want to write. Maybe by giving myself permission to not write, I’ll feel free to start writing again. Maybe. Maybe not. This is not a good-bye, au revoir, adios, or sayonara post. I kind of think of it as:

See you later, alligator. In a while, crocodile.

To My Daughters-in-law

Posted on July 14, 2015 by Laddie

Dear Becky and Danielle,

You have never known me without Type 1 diabetes because I was diagnosed before you were born and certainly before you married my sons. You may have seen me test my blood sugar and push buttons on my pump to take an insulin dose. You have never seen me incapacitated or ill as a result of diabetes and it is possible that you come away from my story without understanding how serious and deadly Type 1 diabetes can be. Very naively I never worried that your husbands/my sons would get Type 1 and so far they haven’t. I pray that your children/my grandchildren never get diabetes, but if they do, you will manage and they will be fine.

Today I have information that I want you to share with you. Last weekend, two young children died because of Type 1 Diabetes. These were not children without access to medical care. They could have been your child or your neighbor’s child. One of these children was incorrectly diagnosed by her doctor. A simple blood test with a $1 test strip or a urine dipstick test could have diagnosed Type 1 diabetes in 5 seconds and saved her life. The second child was diagnosed correctly in the emergency room. Despite state-of-the-art medical care, he died a few days later.

Five-year old Kycie became ill one Sunday in late January, 2015. Initially her parents thought she had the flu and a Wednesday visit to the child’s doctor resulted in antibiotics for strep throat. She went to the doctor again on Friday and to the ER that afternoon. A series of seizures resulted in extensive brain damage. Tens of thousands of people followed Kycie’s story on Facebook as she and her family battled for 6 months to save her life. On Saturday, July 11, Kycie passed away at home in the arms of her parents.

A shorter story, but just as heartbreaking, is that of David Michael Brown who died in a pediatric ICU at age four last Sunday, July 12. David became ill midweek with what appeared to be the flu. When his symptoms became more severe, his parents took him to the ER where he was correctly diagnosed with Type 1 diabetes. Intensive medical care could not save his life and within a few days, David lost his battle with diabetic ketoacidosis as a result of multiple organ failure.

I urge you to learn the symptoms of Type 1 diabetes as shown in the poster below and explore the Test One Drop website. I also suggest that you like the Test One Drop Facebook page. The mission of this organization is to

“bring awareness to the general public and the medical community of the similarities between the symptoms of Type 1 Diabetes (T1D) and common illnesses such as influenza, strep, and viral infections with the purpose of stopping delayed and misdiagnosed T1D which can lead to life-threatening DKA, permanent handicap, or death. Additionally, we are seeking a change in the Standard of Care Practices to require medical personnel to screen blood or urine samples for glucose levels before diagnosing sick patients with a common illness that might be masking or mimicking Type 1 Diabetes.”

My wonderful daughters-in-law — although your children are at a somewhat higher risk of getting Type 1 diabetes because of my diabetes, most diagnoses are of children and adults with no family history. The causes of the autoimmune beta cell destruction resulting in Type 1 diabetes are not known. For unknown reasons the incidence of Type 1 is increasing worldwide. Although this post highlights the stories of two children, please remember that Type 1 diabetes can strike at any age from infants to senior citizens and these symptoms should not be ignored in adults.

Share this message with your friends, family, and acquaintances. Educate your schools and daycare. Print out the free poster from the Test One Drop website and ask your pediatrician whether they test the blood sugar of children at well-child visits and whenever they have flu-like symptoms.

Although there is nothing easy about living with Type 1 diabetes, I am one of many people who illustrates that you can have a wonderful life with and despite diabetes. You, my sons, and your children are proof of that.

Throughout my 38 years of Type 1, I have seen incredible improvements in insulin and technology that make living with this condition more manageable. Two things have not changed. Type 1 diabetes is a death sentence if it is not diagnosed. And even with proper medical care, Type 1 diabetes is a serious and life-threatening illness.

With love as always,

Laddie, your Mother-in-law

Please note that this blogpost was edited in November 2015 to reflect a correction in David Michael Brown’s story. My understanding from Facebook stories in July was that an incorrect diagnosis had led to a delay in care for David. That was not the case and he was diagnosed correctly. But even with appropriate and intensive medical care, David lost his life as a result of Type 1 diabetes.

I have also updated the Test One Drop mission statement and displayed the current version of the free downloadable poster.

NuGo Nutrition Slim Bars: As Good as Advertised?

Posted on June 23, 2015 by Laddie

I don’t do many product reviews. Most of you don’t want to read them and I don’t use many of the product types that are pitched to me. In general I am quick to share my strong opinions about the pumps, CGM’s, and meters that I use and I am comfortable with my stance of not reviewing products just for the sake of getting something free.

In mid-May I received an email from a marketing rep at NuGo Nutrition. She wrote that NuGo Slim “is a delicious snack to help effectively manage blood sugar levels. It has been tested and proven to be the lowest Glycemic Index protein bar on the market with a GI score of 24! It’s also gluten-free, non-GMO, contains no maltitol….” Blah, blah, blah. Usually that is not enough to impress me. What hooked me was: “is coated with REAL dark chocolate.”

Nutrition bars have never been part of my life although I carry Nature Valley Crunchy granola bars when I hike. I rarely eat them but pack them because they are full of sugar, taste good, and hold up well in the heat. Although I hike long distances (10-13 miles), I have never once sampled a Cliff bar, a Kind bar, or any other high-protein bar. In general I have my steadiest blood sugars when I use temporary basals and don’t eat. Obviously on an all-day hike I need food and do my best to bolus correctly for a cheese sandwich and an apple at lunch. Frankly I have no idea whether there would be a benefit of adding low-glycemic high-protein bars to my trail food. Maybe there would be.

So I said yes to the NuGo promotion and received a large box that included the five flavors of NuGo Slim bars. I told my husband that he was allowed to eat them but he must leave a note with a taste review. He started with the Espresso bar and indicated it tasted good but was a bit dry. My first sample was Brownie Crunch bar (the more chocolate the better!) and I thought it was quite good. Both of us liked the other bars. After Brownie Crunch, my favorite was Roasted Peanut. The Raspberry Truffle was tasty and a good texture, but I personally like my chocolate without other flavors. The dark chocolate coating on all of the bars was delicious and definitely tasted like “REAL dark chocolate.”

So how did they work with blood sugar? The first time I monitored my BG, I subtracted the 7 grams of Fiber and bolused for 12 grams of carb. Amazingly I did not get a huge spike and my BG reading at 1 hour was level. At 2 hours however, my BG had climbed about 35 points. I will need more bars to keep the experiment going, but I think the best bolus profile for me might be to pre-bolus for 12 grams of carb and then use an extended bolus of 1 hour for the additional 7 grams. (Somehow subtracting out fiber has never worked great for me.) But I definitely did not get the huge spike that I would have seen with a traditional brownie.

One plus was that the “heavy” texture of the bars helped me be satisfied with just one bar. With regular brownies and cookies, one bite usually makes me crave more and I ~~rarely~~ never stop at one bar or cookie. So are these bars a good choice to satisfy my sweet tooth without totally wrecking my blood sugar? Maybe. Am I better off continuing to try (not always successfully) to avoid most sweets? Maybe. But I decided to invest in another box of Slim bars to see if they make sense as a long-lasting addition to my diet. I’ll definitely be interested in my blood sugar patterns as I try more bars.

Although NuGo Nutrition Slim bars are available in many markets, I did not have much luck finding them locally. My closest “premium” grocery store does not stock them. A nearby Whole Foods carries the regular bars, but not the Slim variety. I was in Annapolis, MD last week and the Whole Foods there did carry two Slim flavors as did Fresh Market. Fortunately the Where to Buy tab on the NuGo website indicates which varieties of bars are carried at each store.

Today I ordered a 12-pack box of Slim Brownie Crunch bars online. The cheapest option I found was at iHerb.com where the price was $20.86 for a box of 12. I received a $5 credit for my first order and then paid $4 shipping. The final cost was $19.86 or $1.66 per bar. (Amazon was much higher.) A box of 12 is available on the NuGo website for $21 + $5.95 shipping ($100 order required for free shipping).

Are the NuGo Nutrition Slim bars as good as advertised? Actually I think that their claims are credible and if you are looking for a “blood sugar-friendly” nutrition bar, you should check out the NuGo website. All Slim bars are certified to be Gluten-free and 2 of the flavors are Vegan. Detailed nutrition information is available here by clicking on each flavor of bar. If you’d like to read another review of NuGo bars and diabetes, check out Tarra’s review at My Crazy Life With My Diabetic Service Dog.

*****

I received a complimentary sample box of NuGo Nutrition Slim bars, but as always, my opinions are my own and not available for sale.

My Blue Ribbon First Place Change

Posted on May 14, 2015 by Laddie

6th Annual Diabetes Blog Week

Today’s Topic: Today let’s talk about changes, in one or two ways. Either tell us what you’d most like to see changed about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one have seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you? To read all of the other posts in this category, click here.

Having been diagnosed with diabetes in 1976, I have experienced a huge number of changes. Some, such as the advent of home blood glucose meters, were so long ago that I don’t remember the effect on me or my diabetes care. Others, such as my insulin pump, greatly increased my quality of life but didn’t improve my A1c.

By far the biggest improvement in my diabetes care as tracked by the change in my A1c and maybe in the stability of my blood sugars was the addition of Lantus to my diabetes regimen. Those of you who were diagnosed after the days of NPH missed out on the rollercoaster peaks and valleys of this “Not Particularly Helpful” insulin. There were definite benefits to NPH such as rarely needing a shot for lunch and getting to eat bolus-free candy bars at 4:30 PM in order to make it to dinner without a paramedic visit. But it was an intermediate-acting insulin that was slow to start working and then hit with a vengeance 6-9 hours after injection. The most difficult thing about NPH was its unpredictable variability from day to day.

Lantus was introduced in the United States in May 2001. At that point I was seeing an endocrinologist whom I liked a lot and was/still is quite renown in the world of diabetes. I remember one of my last appointments with him. He looked at my A1c and BG records (using a regimen of NPH, Regular, and Humalog insulins) and said something like: “You’re doing great and seem to be able to get anything to work. Keep doing what you’re doing and let’s not make any changes.” Soon after this appointment I left this endo’s practice for insurance reasons and switched to an internal medicine doctor as required for an endocrinology referral in my new network. At my first appointment with the Lantus First Place new doctor, he looked at my medications and said something like: “Why in the world are you still on NPH and not taking Lantus?” I was far from a proactive patient in those days and probably had never heard of Lantus.

I started on Lantus immediately and four months later, my A1c had dropped 1.7 points from my test 5 months earlier. Even more amazingly, my A1c was 2.5 points lower than the test of 9 months previous. I had also lost the ten pounds that I had gained in my perimenopause 40’s. So much for an endocrinologist versus an internal medicine doctor…. I got some of my best diabetes care ever from this internal medicine doctor and did not return to an endocrinologist until several years later when I chose to begin using an insulin pump.

Lantus is not perfect by any means and these days many Type 1’s take two to three injections a day rather than the 2001 “promised land” of one injection a day. I am a very happy pumper in 2015 but know that if I had to go back to a regimen of Lantus/Levemir and Novolog/Humalog/Apidra, I would be totally fine. The major change would be that I would have to become comfortable injecting mealtime insulin in front of other people and probably take several injections of Lantus/Levemir per day.

I have decided to negotiate with Medicare who will be my insurer in 23 months. If Medicare will fund my Dexcom CGM, I promise to go back to injections and probably save the insurer money. Unfortunately under current regulations, that idea is a pipe dream and I will continue to pump and save my pennies to personally fund my Dexcom.

One thing that I will not do is to go back to NPH. Unless that is my only choice….

Keeping It to Myself

Posted on May 12, 2015 by Laddie

6th Annual Diabetes Blog Week Today’s Topic: Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.) To read all of the other posts in this category, click here.

I have always kept most of my diabetes self-care tasks private. My sister and I both have Type 1 diabetes. She always injected (and still does) in front of others—usually in the middle of the kitchen. I always went somewhere private—usually the bathroom. I have never changed nor become comfortable giving my shots in front of others. What has changed is that I went on a pump and for the most part injections disappeared from my life. I don’t insert infusion sets in public or in front of my family, so I basically keep this stuff to myself.

I used to do all of my blood glucose testing in private and have at least mellowed on that through the years. I try to be discreet and will test with my kit in my lap at a restaurant. But I don’t unpack everything and set up a BG station on the table. Does this mean I am mired in shame over diabetes? No. Well….maybe a little bit. At the same time I am comfortable with keeping most of my diabetes tasks private and don’t feel much need to justify what is my comfort zone. I am not critical of other people’s decisions on how they handle their public diabetes persona. Do what works for you and I am okay with what works for me.

There is one story where many of you will strongly disagree with me. A few years ago there was a discussion on a diabetes message board (probably ADA or TuDiabetes) that resulted in lots of responses and quite a few arguments. A cousin (or the mother?) was planning her wedding and asked the original poster to not test or give injections at the table at the wedding dinner. Many of the responses to that scenario expressed outrage at Insensitive Cousin the idea that this cousin would dictate this and suggested that the person refuse to do this or maybe just skip the wedding.

I would argue that long term the cousin and her mother need education on diabetes and maybe an extended course on good manners and compassion. At the same time it is just not that big a deal to me. My view would be that my cousin is a pain-in-the-neck bride-to-be, but I would be willing to honor her request. It is her wedding day and it is a small thing to find an isolated spot to test and inject for one day. I am willing to extend her the courtesy of not offending anyone with blood and gore and evil diabetes germs although I think she is wrong in asking this of me.

Before you start screaming, I know that this is a slippery slope. What if she asked me not to come because I am in a wheelchair? What if she asked me to leave my mixed-race husband at home? What if she asked me to wear Spanx because I am slightly overweight? What about another forum post where the mother of an adult T1 screamed at her child to leave the kitchen and always test her blood and inject in the bathroom?

I keep a lot of things to myself. In recent years the DOC has taught me to be more open about my diabetes and not to hide what I need to do to stay healthy. I think that we all have to fight our battles when and where we choose. No one wants to feel like a second-class citizen or ashamed of their diabetes. At the same time, I am a fan of occasionally leaving my indignation at home.

For sure, I am a work in progress.

Oh Yes, I Can

Posted on May 11, 2015 by Laddie

This is my second time participating in Diabetes Blog Week and like last year, I am overwhelmed at the idea of publishing a blogpost every day for seven days. In the middle of 2014 Blog Week, I secretly swore that I would never participate again. But I managed to stick with it. By the end of the week I was exhilarated with the passion and talent of my fellow diabetes bloggers and was proud to have participated. So here we go for the Sixth Annual Diabetes Blog Week! As always, thanks to Karen Graffeo of Bitter~Sweet™ for being the brains behind this project and organizing it for the sixth year.

Today’s Topic: In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.) To read all of the posts in this category, click here.

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I was ignorant about diabetes when I was diagnosed as a young adult in 1976. It never dawned on me that it would change the direction of my life and no one told me that it might limit anything that I hoped to do. As I sit here 38 years later, I like to think that I have not been held back by diabetes although I know that many things have been more difficult because of the constant demands of Type 1.

I think the one thing that I do that others are often amazed by is hiking. I spend a third of the year in Arizona and when I am there, I hike once or twice every week. My Friday hikes are not for the faint of heart and I join a group of friends on excursions that average 10-12 miles. Most of the hikes are in mountainous areas and often we are in areas with very little traffic and no cell phone coverage. The scenery is fabulous. The fellowship of this tight-knit group of women is inspiring. Every week is a challenge and I begin each season of hiking with the fear that this is the year that it will be “too hard” for me.

I have mixed feelings about how my Type 1 diabetes is viewed in this group. On one hand, I feel safe with these women because two of them are nurses and one has a sister with Type 1. The others are strong, confident women who wouldn’t faint at the sight of a Glucagon needle. I have never once felt that anything about my health is a burden to the group. The thing that makes me uneasy is the universal conviction that I am the model of someone who has her diabetes totally “in control.” It’s the idea that I “do diabetes” better than other people and the belief that I am somehow different from other people with diabetes.

I work hard at caring for myself, but I am a long ways from being perfect. My days are filled with good decisions peppered with less than optimal choices. I believe that I am lucky to have no severe complications after so many years of diabetes and I definitely know others who have not been as lucky. I realize that I have been the beneficiary of good insurance and have always had access to the hardware, supplies, and medications that allow me to live an active life. So I am uncomfortable being labeled “the good diabetic.”

At the same time I need to remember to take pride in what I do. I can hike because I work hard to stay in shape. I can hike safely because I am neurotically organized and am prepared with adequate food, water, and back-up diabetes supplies. I can hike because I am willing to push my boundaries while keeping a realistic view of my capabilities. I can hike because diabetes has been kinder to me than to some others. I can hike because…well, I just can.

Take that, Diabetes!

Related Posts

Hiking with Diabetes Part 1

Hiking with Diabetes Part 2

Short Hikes – Hiking with Diabetes Part 3