Meet the Hansons!

Posted on January 25, 2016 by Laddie

A 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.

*****

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.

November!

Posted on November 9, 2015 by Laddie

November is a month of change in Minnesota. We move from the somewhat warm days of late October to cold wintry weather by the end of the month.

It is also a busy month for me when it comes to diabetes. 1) It is Diabetes Awareness Month with special events and increased advocacy. 2) JDRF sponsors a TypeOneNation Summit in the Minneapolis area. 3) My diaversary is in November. 4) The Big Blue Test is in full swing and World Diabetes Day is coming soon.

Below you’ll find some outdoor photos that scream “November!”

I have been raking for a few weeks now, but one maple tree refuses to shed its leaves. Our last leaf pick-up is Friday and I am hoping that these leaves will drop before then. If that doesn’t happen, my fingers are crossed that strong winds next week will blow the delinquent leaves into my neighbor’s yard….

The signage at Hyland Lake Park Reserve where Abby the Black Lab and I walk several times a week has changed in anticipation of winter. The trail labeled for dog walkers, bikers, and rollerbladers in the summer is now marked for dog walkers and snowshoers.

Although I shudder at the idea of snow, we have already seen flurries this fall. Once it gets colder, the snowmaking machines in Hyland Park will start blowing snow for the nearby cross-country ski trail. Although I live in the suburbs, I can see downhill and cross-country ski trails from my house. Just barely out of sight is a 70-meter ski jump. And you wonder why I spend my winters in Arizona!

An apple on the ground and you question why I am showing you my garbage. My neighbors have apple and crabapple trees and fruit litters my backyard. The fruit-eating animals I have seen in the last week include coyotes, birds, deer, squirrels, and Abby the Black Lab. Who left the half-eaten apple? Probably Abby who really prefers deer poop. Yeah, we’ve got piles of that in the yard also.

Below you’ll find some November photos that scream “Diabetes!”

Diabetes social media has been saturated this month with blue photos as part of the JDRF T1D Looks Like Me campaign. I have a long history of hiding my diabetes, but thanks to my years in the DOC, I proudly share my photo.

TypeOneNationLogo Saturday was the JDRF TypeOneNation Summit for the Minneapolis area. Author and CDE Gary Scheiner (Think Like a Pancreas) shared his wealth of knowledge in both the keynote talk and a session about interpreting CGM data. I also attended a talk by the incredible Jay Hewitt. Jay is an Ironman triathlete who was a member of the U.S. National Triathlon Team and raced with Type 1 diabetes.

Don’t forget the Big Blue Test.

Remember to follow the hashtag #WDDchat15 on Saturday, Nov. 14 to participate in the World Diabetes Day #DSMA TweetChat. The schedule can be found here, but stay tuned to @DiabetesSocMed on Twitter for updates.

WDDCHAT2015

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And finally, today marks 39 years since I was diagnosed with diabetes in 1976.

Diaversary39

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.

JDRF One Walk Manhattan 2014

Posted on October 2, 2014 by Laddie

This post is a little dated because I have been on the road and decided to wait until I got home to add the photos and publish my story. Last Sunday I got the opportunity to walk across the Brooklyn Bridge while supporting JDRF.

My youngest son lives in New York City with his wife and almost one-year-old daughter. In general I hate New York because I am a suburban girl at heart and get claustrophobic being around all the people and crammed-together buildings. But one night in early summer I saw a post by Alecia of Surface Fine mentioning the JDRF One Walk Manhattan 2014. Before I knew it, I had signed up and pledged to raise a certain amount of money and walk with Alecia’s Stem Cells team.

A little background here. I grew up on the East Coast and have been in and out of NYC most of my life. But I have never really liked it. I hate the crowds, I hate the filth, and most especially I hate the smells. Somehow I managed to have a child who loves New York, moved there after college, and has never left. Usually we see him when he comes to Minneapolis for family visits, holidays, and friends’ weddings. My husband occasionally has business in NYC and meets him for dinner. Now that my son is a father, I have pledged to visit him and his family occasionally rather than always make them come to my part of the world.

More background. When my darling granddaughter was born last October, I flew out to NYC to do my best to be helpful. Previously I had “met” Alecia online through Twitter and then her blog. I had also purchased one of her 2013 Alecia’s Stem Cells T-shirts because it was such a great design. So with no fear I emailed her to see if she would like to meet for lunch or a drink. In typical Alecia-style, she replied quickly and suggested Saturday brunch. We enjoyed our visit and found that we had a lot in common. Although I am a generation older than Alecia, we have both had Type 1 for over 35 years and we use Animas pumps and Dexcom G4 CGM’s. Since our first meeting a year ago, we have continued to keep up with each other in typical DOC-style with occasional Tweets, emails, and blog comments.

Alecia is an avid JDRF supporter and this was her 15th Walk. Alecia’s Stem Cells team raised over $37,500 this year. Rather than recreate the wheel, I’ll share Alecia’s summary of the fantastic 2014 walk:

We had Walkers this year from NY, NJ, PA, IL, and MN. We had our largest Walk team ever. We had friends and family from the very first Alecia’s Stem Cells team in 2001 and first time walkers who’d never been across the Brooklyn Bridge. We had a grandmother who’s T1D, a 40-something T1D (me), a 20-something T1D and a 8-year old T1D. The team may carry my name, but we were walking for ALL of us. Alecia’s Stem Cells was announced as one of the top 5 fundraising teams for the JDRF NYC. We ran out of yellow ASC team ONE to NONE shirts and even had some walkers in the grey shirts from our online fundraising sale last month. Simply put, it was AMAZING adventure this year.

I am especially glad that I joined Alecia’s walk this year because on Sunday afternoon she announced that this was the last walk for Alecia’s Stem Cells. She has decided to challenge herself by joining the JDRF’s endurance sports program and begin training for one of the 100-mile bike rides in 2015.

One thing that I know about Alecia is that whenever she tackles a project, she always gives 110% and doesn’t quit until she succeeds. I look forward to seeing which ride she chooses and I promise to support her with a donation. Although I was happy to cross the Brooklyn Bridge with Alecia, I can say with absolute certainty that I will neither accompany her on training rides around Manhattan nor join her for a 100-mile ride!

Here are a couple of photos:

With Alecia at JDRF One Walk Manhattan 2014

JDRF One Walk Manhattan 2014 is a family affair

The Road to a CGM

Posted on September 25, 2014 by Sue from Pennsylvania

If you have been reading my blogs, you will already know who I am. If you have not, here is what I have been doing for the past two years. In June of 2012 my husband Marc became eligible for Medicare. He is a type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Prior to entering the Medicare system, his Continuous Glucose Monitor (CGM) was covered by his private insurance company. Once he went on Medicare, this was no longer true. He was denied coverage of a new CGM when his old one stopped functioning.

We decided to fight Medicare because we really believed that the guideline should be changed for this piece of equipment. There are four levels to Medicare’s appeals system. Levels 1 and 2 are basically rejection letters from the insurance company and an independent company hired by the insurance company to review the insurance company decision. Level 3 is a hearing with an Administrative Law Judge (ALJ). I blogged about the 9-month wait for his decision in a mid-March 2014 blogpost. Unfortunately, that decision was UNFAVORABLE.

We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). Sadly, after a 5 month wait, we got a decision on Saturday, September 20 and the MAC upheld the ALJ decision. Previously we had thought that we would go to the next Level which is an appeal to the Federal Court System. Fortunately this was unnecessary because three weeks ago, the Veteran’s Administration (VA) supplied Marc with a CGM and sensors. My blogpost titled He Finally Got One! give the details of that wonderful milestone.

The Road to Getting a CGM Because of Marc’s new situation with the VA supplying the CGM and sensors, even had the MAC given us a favorable decision, we would not have been able to accept the CGM though Medicare. But that doesn’t mean that I’m done with my advocacy. I am now going in a different direction and am going to do whatever I can to encourage everyone I know (and don’t know) to please sign the letter urging their Senators to support the Senate bill S. 2689 introduced by Senators Susan Collins and Jeanne Sheehan and the new companion bill H.R. 5644 introduced to Congress by Representatives Tom Reed, Diana DeGette and Ed Whitfield urging support from their colleagues in the Congress. Both of these bills are called the Medicare CGM Access Act of 2014. At the same time, please sign the Petition put forth by the Juvenile Diabetes Research Fund (JDRF) that will go directly to Medicare. Currently there are over 57,000 signatures but we need many more.

Please check out Laddie’s recent blogpost which gives links to easily contact your Senators and Representative and to sign the petition.

Over the past two years that I’ve been advocating for the CGM, I have met many wonderful people. It is because of them (Janice, Mig, Debbie, Dan, Judy, just to name a few) that I have continued on despite being so frustrated at times that I literally felt as if I could not go on any further. I would be totally remiss if I didn’t thank Laddie and Sue for their support as well. Both of them have been my teachers since as I’ve often said “I am not the diabetic”, and I had a lot to learn. I will keep on advocating and doing whatever is necessary until we collectively reach the goal of getting Medicare to change their guideline. I knew this wasn’t going to be a sprint. I knew this was going to be a marathon. And I knew I was in it for the long run. And I will continue to keep on blogging and working to get the guideline changed until the day that I can finally say WE GOT IT DONE.

Wow!

Posted on December 17, 2013 by Laddie

On Monday evening, December 16, I had the privilege of listening to Haley Doyle talk about her introduction into the world of Type 1 Diabetes. Everyone with diabetes has a unique and powerful story, but Haley’s story hits it out of the ballpark.

Haley was the featured speaker at the December meeting of the JDRF Adults with Type 1 in Bloomington, MN. Here is her bio according to the JDRF promotional email:

Haley Doyle is currently a Senior at the US Naval Academy in Annapolis, Maryland with a double major of Aerospace Engineering and Russian. Haley’s road to that prestigious school reflects an incredible personal story of commitment, intelligence, and a passion for life that is rarely found. Her story will emphasize family, opportunity and living life to the fullest despite being diagnosed with T1D during her Freshman year, jeopardizing her military ambitions and career path. Haley Doyle is an overachieving, yet humble, young woman from Kansas, who has a story that you will definitely want to hear.

Haley was diagnosed with Type 1 Diabetes in February of her Plebe year at the United States Naval Academy in Annapolis, MD. Most of us would guess that she would have immediately been dismissed from the service academy, but with grit, determination, and support of her commanding officers, she persevered through 3+ years of medical boards, recommendations for dismissal, rigorous training missions, and a challenging academic load to be on track for graduation in the spring of 2014.

Lest you think that this is a Pollyanna story, Haley will be medically discharged from the Navy upon graduation. The civilian workplace will be the beneficiary of the tremendous talents and military training of this young woman with a defective pancreas.

Haley Doyle – JDRF Adults with Type 1 – 12/16/13

I asked Haley if she thought that people with Type 1 should be able to serve on Navy ships or at the front lines of military conflicts. Like me, she has no definite answer. She understands that a low blood sugar or a broken pump could jeopardize an officer’s ability to effectively complete a mission or provide leadership to guide and motivate the soldiers in her command. But she has climbed mountains in Alaska, she can do a million push-ups, she has scuba dived in the Caribbean, and she has completed a JDRF 100-mile bike ride. I don’t know the right answer and neither does Haley.

I would argue that rather than lose the talents of anyone like Haley, the Navy should commission her in a restricted line corps position. Maybe someone with Type 1 Diabetes shouldn’t command an aircraft carrier in the Gulf of Yeman or be pilot of a F/A-18C Hornet. But she can design bridges in the Civil Engineering Corps. She can coach the varsity women’s crew at the Naval Academy, she can provide inspiration for numerous high school students thinking of entering the military, and she can serve her country. As a tax-payer, my money to train Haley has been wasted. As someone with Type 1 Diabetes, I know that our country has squandered its investment in the education of a fellow T1. I am disappointed and I am angry.

But thank you, Haley, for reminding me how strong and talented we T1’s are. And thank you, JDRF, for sponsoring our Adults with Type 1 group. You have introduced me to Tim who is a Joslin Medalist after living with Type 1 for 50 years. And Wally who is at 49 years. And Connie who long ago passed 40 years with Type 1. Then Christine who bikes in JDRF rides and this year will raise $10,000 for diabetes research. And Katie who taught me about arm and hip sites for my Dexcom CGM. And Chad who is quiet, but doesn’t miss a thing when it comes to Type 1. Plus Doug who runs in marathons and just welcomed(?) his sister into the Type 1 universe. We missed Cynthia at the December meeting, but she constantly reminds me that I need to nurture my soul as well as take my insulin. Scott also missed this presentation because he is in Europe with the mySugr guys. I am inspired by all of you and proud to be your friend.

Wow!

JDRF Reach and Teach

Posted on November 18, 2013 by Laddie

Saturday I attended the 5th annual Reach & Teach sponsored by the MInnDakotas chapter of the JDRF. The event was a family event with children participating in a KidsKamp while their parents visited vendor booths and attended educational sessions. The JDRF has been working hard to include adults with Type 1 in its mission and the event had plenty to offer T1 adults. Many of the adults who attended are part of the local JDRF Adults with Type 1 support group and it was a day of fun meet-ups and conversations.

Kerri Sparling, the rock star blogger from Six Until Me, was the featured speaker for the event. It’s kind of a “duh” thing to say, but in person she is just like she is online. She sparkles, she is witty, she talks fast, and she draws you into her story to help you learn about your own. To the parents attending the opening session, she was proof and inspiration that their children with Type 1 will grow up to be happy and healthy adults.

The second part of the opening session was a JDRF Research Update presented by Barb White, a parent of a T1 son and a JDRF Board Member. She gave a thorough overview of the types of research that JDRF funds and inspired us with the theme that “JDRF is turning Type One into Type None…with not just a vision, but a plan.”

Later in the morning Kerri led a session addressing diabetes burn-out. She shared many moments of laughs and tears with the audience of adult T1s, parents, and a few adolescent T1s. She did a good job of involving the group and we covered an eclectic bunch of topics from Dr. Bernstein to bad relationships with doctors. To the 17-year old who shared her angst at the difficulty of trying to be perfect for her parents and doctors, you are brave and you are not alone. Your confession brought tears to my eyes and I hope that sharing your burden made it a bit lighter.

The third session that I attended was The Use of New Media Sources for Diabetes Education and Care Delivery which was presented by two doctors from the University of Minnesota Pediatric Endocrinology Department. Dr. Brandon Nathan began his presentation with the fact that if you do a Google search for “Type 1 Diabetes Mellitus”, you will get 71,400,000 (!) matches. After that he did an overview of research validating the benefits of online education and care for patients with diabetes. Dr. Ewa Oberdorfer’s presentation highlighted her research work with T1 teenagers and the use of online contact and videos made by teens for teens to help improve the education and health results for this age group.

The day ended with a kick-off rally for the 2014 Walk to Cure Diabetes along with a box lunch. It was particularly nice to see salads and gluten-free options in addition to the standard sandwich boxes. Kerri joined a bunch of us for lunch and graciously donated her chocolate chip cookie to Doug (@salguodmai) who had broken the ice in the burn-out session by unabashedly proclaiming his love for candy and sweets. If you check out Doug’s blog, you can read his report of the day and see a few more photos.

Me, Kerri, and Katie

Some other blogger attendees were Katie from Diabetic Advocate, Cynthia from Diabetes Light and Finding Peace between the Pokes, and Mari Ruddy whose new blog is still in development. I have admired Mari for a long time from afar and was pleased to have the opportunity to meet her.

Cynthia, Tom (Katie’s fiance), Katie, and me

It was a good day and thanks to the MInnDakotas JDRF for sponsoring such a high quality event. No one wants to have Type 1 Diabetes, but if you do, the Twin Cities is a good place to have it. We have a strong Type 1 community with lots of opportunities to learn from each other, support each other, and make friendships that are stronger than diabetes. We have an informal T1 get-together next Saturday, November 23 and a JDRF Adult with Type 1 meeting on December 16. If you live in the area and would like information on either of these events, please contact me.