Meet the Hansons!

Laddie_Head SquareA couple of years ago I met Megan Hanson at a dinner meet-up for women living with diabetes. We became Facebook friends and I have been privileged to follow the exploits of her ever-busy family. Last year the Hanson’s T1 Awareness video released in support of JDRF was hugely popular and even shared on the Huffington Post by Riva Greenberg. You can watch the 2015 video as a part of Riva’s post or else click here.

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Meet the Hansons!

A family of six: Mom, Dad, and four boys.

A family overflowing with love and joy.

A household of constant motion, laughter, and chaotic fun.

A family whose smiles light up my Facebook news feed.

A family living with Type 1 diabetes.

Three times over.

Mom and 4-year old twins Leland and Lincoln.

A family who advocates and educates others about Type 1 diabetes.

A family who will be walking in the JDRF One Walk at the Mall of America on February 20, 2016 to help “Turn Type One into Type NONE!”

In mid-January the Hansons released their 2016 “day in the life” video showing what Leland and Lincoln deal with in a day of diabetes. It’s longer than last year’s video and we see that although diabetes does not rob this family of smiles and laughter, there are occasional tears. The twins clearly “know their stuff” as they explain the basics of Type 1 diabetes and show their expertise at testing BG. Mom and Dad are in the background helping out with the hard stuff and performing middle-of-the-night BG checks. Brothers, one older and one younger, scream cheers of support every step of the way.

If you would like to support Team Hanson’s JDRF walk, click here. Very importantly, remember that every time you support JDRF, you are helping children like Leland and Lincoln and families like the Hansons. Watch their amazing video and join all of us who dream of a world without Type 1 diabetes.

 

Hacked!

Laddie_Head SquareSome of you may have received an email from me yesterday asking you to sign into Google Docs and check out some I shared with you. I learned about the problem yesterday morning when I was 30 minutes from home and heading to Target before a D-friend meet-up lunch at Costco. My friend Susan from Scottsdale is convinced that there is a proper way to bolus for one slice of Costco pizza, but I have never figured it out. I keep meeting her over and over again to give it another try, but my blood sugars always suffer.

In the Target parking lot, I changed my Gmail password knowing that there wasn’t much more that I could do at that moment and headed into the store, somewhat in a daze. Fortunately my shopping list was only 6 items and I quickly threw them in the cart. I met my friends at Costco and slurped up several Diet Pepsi’s because my stomach was too stressed for pizza. I still haven’t forgiven Costco for switching to Pepsi from Coke, but that’s an issue for another day.

I am usually an expert at deleting posts from Nigerian princes asking for my money and passwords and I have never been hacked before. Unfortunately with 20-20 hindsight I now know that the post that resulted in my email breach was the result of a hack of a DOC friend who had once legitimately shared a document with me on Google Docs. I can see in my Gmail device history that the breach was instigated by a Windows computer in Malaysia. Hopefully new passwords and two-step device verification will prevent another intrusion.Hacked

Recently I was accused of being a digital hoarder because I have almost 10,000 emails that haven’t been categorized or deleted. Guilty as charged and yes, I have been sufficiently punished.

If you received a hack email from me, I apologize.

If you receive a suspicious email from a DOC friend or anyone else, check it out before innocently clicking on links as I did.

If you have a magic bolus formula for Costco pizza, let me know. And if you can convince Costco to abandon its Pepsi contract and go back to Diet Coke, I’d appreciate it.

Hiking with Diabetes in 2016

Laddie_Head SquareOn January 1st I greeted the new year with a 9-mile hike in the Mazatzal Mountains near Sunflower, Arizona. I am an avid hiker and have written extensively about hiking with diabetes. You’ll find some of those posts listed at the bottom of the page.

Not a lot has changed with my hiking in 2016 except for two tech devices.

Dexcom Share:  I have often complained that the Dexcom G4 receiver is unreadable in bright sunlight. Animas pumps are even worse. I can’t see a darn thing on the screen. This year is my first experience hiking with the ability to see my Dexcom numbers on my iPhone. It’s fabulous. I can read the numbers with no effort at all. Now when my Dex receiver vibrates, I can pull out my phone to see whether it is a high or low alert and what the number is! Unfortunately I still can’t read my pump screen.

Spot Gen3 Tracker:  Despite my emphasis on safety, I have realized for several years that I was missing one device that a hiking group like mine should have. We are quite adventurous and most of our hikes are in mountainous areas with no cell phone coverage. If one of us were to get  injured or sick (or have issues due to Type 1 diabetes!), we’d basically be up Sh*t Creek. Most likely we would have to split up the group with some hiking out and driving to get help and others staying behind with the hiker-in-trouble. When you are 5-6 miles away from the car, this is not an ideal situation.

In response to my first hiking post in 2013, Scott Johnson mentioned a satellite-based SOS device that he had used for job-related drives in the boondocks. He wrote:

I think it’s wise to have the glucagon and prep the group. Hopefully you’ll never need any of it. But that’s one of the things about living with diabetes — we have to plan for the absolute worst case scenario.

When I was doing some work that involved a lot of driving in very remote areas I found a device/service called SPOT that used satellites to allow me to call for help, if needed, or broadcast an “I’m Ok” message to loved ones. Thankfully I never had to use the rescue service, but it provided great peace of mind.

Two and a half years later I am now the owner of a Spot Gen3 satellite tracker. According to the company website, the device “provides location-based messaging and Spot Tracker Photo_Croppedemergency notification technology that allows you to communicate from remote locations around the globe.”

That means that I can send out pre-programmed “I’m OK” messages to multiple phone numbers and email addresses. The two routine message options provide GPS coordinates and a link to Google Maps showing my exact location and track. There is a Help, but not life-threatening message that can be sent to designated contacts. Finally there is a SOS button that will summon a cavalry of emergency responders and helicopters.

I hope never to be in a situation where we must use the SOS alert. But if we face a life-threatening emergency, the cost of my annual Spot contract with be worth every dollar. (BTW I received my tracker free due to a pre-Christmas rebate contingent on purchasing an annual monitoring contract.)

Related Posts

Hiking with Diabetes Part 1

Hiking with Diabetes – Part 2

Short Hikes – Hiking with Diabetes Part 3

Oh Yes, I Can

 

Breaking Tradition

Laddie_Head SquareFor most of my adult life, I have gotten a stomachache starting in mid-December. It doesn’t go away until late afternoon on Christmas Day. It’s obviously related to stress although it feels somewhat reminiscent of the nausea and fatigue that accompany low blood sugar.

Many years ago the stress was probably warranted during the holidays. Lots of shopping, planning, entertaining. More shopping and trying to think of gifts for people who don’t need anything. #FirstWorldProblem. Searching every Target in the Minneapolis area for the one He-ManChristmas Tree action figure which sold out in early November. Making grocery lists and checking them twice. Decorating and cleaning house. And so on….

I am the first to admit that at this stage in life, it is unreasonable that I am close-to-puking stressed in December. We no longer exchange gifts with the adults in our family. No sweaters, no dice games, no puzzles, no tacky glass figurines. The grandchildren are fun to shop for although I am not allowed to buy American Girl dolls or video games. The meals are still big, but much simplified compared to 20 years ago. I don’t make cookies and one daughter-in-law handles that.

Unfortunately my stress is a “Pavlov’s dog” reaction to December. It is no longer based on reality but still shows up every year. It is definitely my problem and not the fault of others placing too many demands on me.

I spent much of this December b*tching to friends about how I have to cook prime rib on Christmas Eve and don’t even like it. I grew up in a family where Christmas Eve meant vegetable soup and opening one gift. The big festivities were on Christmas Day. My husband is the grandchild of Scandinavian immigrants and Christmas Eve in his family meant roast beef, lutefisk, boiled potatotes, sylta, potato sausage, pickled herring, rolls, lefse, the Minnesota addition of jello salad, and about twenty kinds of cookies. Christmas Day was another huge meal with turkey and trimmings.

Last weekend one daughter-in-law reminded me that last year I swore that I was going to serve pizza on Christmas Eve! I laughed and said that was a pipe dream. Over the next few hours I began to think “Why Not?” and sent an email to the eight involved adults. The four grandchildren technically had a say and of course chose pizza. One of my sons expressed a desire to have roast beef and my husband wisely kept quiet.

But the decision was PIZZA!

Pizza

I’ll make a salad ahead of time for the adults and the kids will eat veggies and strawberries. We’ll bake pizzas from Papa Murphy’s. After that we will open gifts and have cookies and coffee. I am looking forward to this and my stomach ache is easing up a bit.

I haven’t completely thrown tradition out the window. We will use the Christmas tree plates and sit at the dining room table. We will open Christmas poppers which contain jokes, tiny toys, and paper crowns. We will wash the dishes before gift opening. Most of the day and evening will remain unchanged.

But I wonder how many years it will be before we use paper plates….

Happy Holidays to all of my friends and readers. See you in 2016!

 

Mental Health Day at the Endo

Laddie_Head SquareI visit my endocrinologist twice a year. I used to go quarterly, but many years ago we decided that there just wasn’t much to talk about every 3 months. Sometimes even the semiannual appointments seem overly routine. My endo respects that I have had Type 1 diabetes for almost as long as she has been alive and that I am essentially a self-managed patient. At the same time she has the ability to pull me out of the tangles of diabetes minutiae and help me focus on the big picture of my overall health. And of course she is the portal to lab work, diabetes technology, supplies, and medications.

If you asked me how my diabetes has been for the last few months, I would answer frustrating. Too many lows, too many highs, too much of this, too little of that. I remember the bad stuff. The overnight lows in the 30’s when I must have acknowledged Dexcom alerts and gone back to sleep. The weekend of intractable highs from sampling a few gorging on Hershey’s chocolates. The party with too much wine and too little willpower. The days of “doing it right” and baffling wacky blood sugars. Insulin acting like water one day and nuclear fuel the next. Nothing unique to anyone with Type 1 diabetes. Probably no better or worse than other months in recent history.

I had my endo appointment on Monday. I arrived on time with Dexcom and Diasend reports in hand. We spent the first part of the appointment discussing a  recent physical with my internist. Some of my numbers have been creeping out of the normal range into that zone that is within target if you don’t have diabetes, but not okay if you do. This is a discussion for a later blogpost, but I agreed to start taking a statin. She could see my distress at these recent changes and emphasized that the differences from last year were not hugely significant. She also discussed that current standards indicate that all patients with diabetes should be on statins unless there is a reason not to be. But ultimately it was my choice.

As she pulled out the Dexcom tracings, I said that I knew they looked good, but they weren’t. This was bad. That was bad. I starting babbling about basals, highs, lows, chocolate.

STOP” she said.

Stop SignStop being so hard on yourself. Stop micromanaging. Stop obsessing over insignificant changes in health indices. Stop driving yourself crazy. Be confident that you are doing a good job. Relax. Take two aspirin with a glass of wine and call me in the morning. Oops, not the last one.

Very kindly she told me that she doesn’t know how people with perfectionist tendencies and diabetes do it. The frustrations, the illusiveness of perfection, the inconsistency, the unpredictability. She shared that her father is a “rocket science” engineer who does not have diabetes but would never being able to reconcile the “do it the same, get different results” illogic of Type 1 diabetes. I am not sure what she said next, but what I heard was “You are doing fine. Continue to respect your diabetes. Be kind to yourself. Keep up the good work.”

Then she walked me to the lab for my blood work. I went home. Definitely better off than when I came.

Dear Senator Al Franken:  Medicare and CGMS

Laddie_Head SquareI have had diabetes since 1976 and will transition to Medicare in early 2017. As most of you know, Medicare does not currently cover continuous glucose monitors for seniors with Type 1 diabetes.

There are companion bills in the U.S. House of Representatives and the U.S. Senate that would require Medicare to change that policy. My Representative Erik Paulsen is a co-sponsor of H.R. 1427: Medicare CGM Access Act of 2015 and one of my Senators, Amy Klobuchar, is a co-sponsor of S. 804: Medicare CGM Access Act of 2015. Unfortunately my other Senator, Al Franken, is not on board with supporting this bill.

Recently I was given the opportunity to work with a consulting firm, HCM Strategists, to share my story with Senator Franken with the hope of influencing him to support S. 804. This is my letter:

Franken Letter

I learned about the opportunity to work with HCM Strategists through a TuDiabetes forum post started by Emily Coles, the Community Director for Diabetes Hands Foundation. She writes:

Diabetes Hands Foundation (parent organization to TuDiabetes) has connected with a group called HCM Strategists, which does public policy advocacy around health and education. They’re organizing advocacy for Medicare coverage of CGMs, and have asked me to identify some community members who are interested in, and passionate about, this issue. We’re particularly looking for folks who are willing to share their personal stories about how Medicare coverage of CGM affects them.

If you’re interested in sharing your story, or taking a more active role on this issue in some other way, please let me know in the thread below and I’ll connect you with the fine folks at HCM! They are seeking people of ALL ages for this effort.”

There are two ways to become involved. 1) Go to the TuDiabetes forum post and leave a message for Emily. You must be a member of the TuDiabetes community, but it is easy to join and a great place to hang out. 2) Or you can email me and I will share your contact information with the HCM Associate who worked with me.

You will then receive an email from HCM with a series of questions (name, age, diabetes story, CGM use, etc.). Your answers will provide an HCM Associate with the information to draft a letter to your elected representatives. With your approval they will also use your letter as part of their outreach to members of Congress.

This is a unique opportunity to have your voice heard in Washington, D.C. Working with HCM Strategists is straightforward and professional and I urge you to advocate for Medicare coverage of continuous glucose monitors by sharing your story.

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Letter to Al Franken

Corrections – Updates – News

Laddie_Head SquareAfter the deaths of two children from Type 1 diabetes in July, I published a letter To My Daughters-in-Law. I shared the stories of Kycie and David and provided information about an advocacy group – Test One Drop. I was recently notified that I got part of the story wrong and that some of the information I provided is now out-of-date. I have revised the blogpost with the following information.

Correction:  From various postings on Facebook, I made the erroneous assumption that 4-year old David Brown lost his life as a result of a missed Type 1 diabetes diagnosis. That was not correct. When David was taken to the emergency room, he was immediately and correctly diagnosed with Type 1. Despite a proper diagnosis and intensive medical care, David died of multiple organ failure a few days later. David’s and Kycie’s stories are powerful reminders that despite improved treatments and technology in the 21st century, Type 1 diabetes continues to be a life-threatening condition.

Update:  Test One Drop has updated both its mission and educational poster. The updated mission 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, t1d-educational-8-5x11_Newpermanent 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.”

Please check out the organization’s website and Facebook page. We in the diabetes community mourn the loss of children like Kycie and David. One purpose of Test One Drop is to keep the conversation going when the heartbreaking stories stop making headlines. Download the updated poster and share it with your friends, family, medical team, schools, and community.

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Update on my G5 Upgrade:  In September I wrote about some of the pros and cons of upgrading from my current Dexcom G4 CGM to the recently released G5. Shortly after I signed up for the upgrade, Dexcom ran low on G5 transmitters. Instead of receiving mine in early October, I am still waiting. According to my Dexcom account, the expected ship date is December 1. So the update is “Still waiting. No news.”

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Update on Medicare Coverage of CGMS:  Although not much has yet changed for CGM coverage by Medicare, some progress is being seen in the court system. Here is a link to a recent article at Medscape about Jill Whitcomb’s victory in Federal Court (Level 5 of the Medicare appeal process). I know of one person who won his Level 3 appeal based on the precedent of the Whitcomb case. Unfortunately Whitcomb is still at risk for further appeals by the insurance company.

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Update from the Unconference:  At the Diabetes UnConference in March, I met Daniele Hargenrader. Daniele has lived with Type 1 diabetes for 25 years and is a diabetes and health coach as well as a personal trainer and nutritionist. If you are seeking a way to dig your way out of the diabetes dumps or need a stocking stuffer for yourself or a loved one, you won’t go wrong with Daniele’s new book: Unleash Your Inner Diabetes Dominator. Check out the book as well as the Diabetes Dominator™ website with Daniele’s blog and links to her YouTube interview series. I will be reviewing this book in a future blogpost.DD Book Cover 2

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Last but Not Least News:  I have recently been invited to share some of my blogposts at Diabetes Daily – a well-known diabetes community with 2+ million visitors a year, almost 300K Facebook fans, and 70,000 newsletter subscribers. The posts will be published first on my blog and those with interest to the larger diabetes community will be syndicated at Diabetes Daily. This is a huge compliment for me and I thank all of you who have encouraged me on my blogging journey.