What I Listen To

Laddie_Head SquareI spend a lot of time walking. For years and years I listened to music on every walk. First I had a Walkman tape player and FM radio, then a CD Walkman followed by my son’s old Dell DJ. I followed with a succession of iPod Nanos, an Android phone or two, and now an iPhone. The type of music I listen to hasn’t changed much from device to device and I enjoy rock, pop, country, classical, alternative, jazz, and show tunes. My iTunes library also stores much of the music that my young grandchildren listen to. Therefore when I listen to songs on the shuffle setting, I am apt to move from John Mayer to the Messiah to Cookie Monster and Big Bird.

My listening habits changed significantly in early 2013 when I started listening to DSMA Live, a podcast about diabetes produced by DCAF (Diabetes Community Advocacy Foundation). Abby the Black Lab introduced herself to Test Guess and Go readers in May 2013 and explained the hows and whys of our DSMA walks. It took six months and 447 miles of walking to listen to the entire archives of DSMA which was at that point 149 shows. Almost two years later I still listen to every DSMA show although I have long since lost count of how many episodes there have been.

Once I became current with DSMA, I had to find something else to listen to. All of a sudden music became boring while I walked and worked out and I was much more interested in podcasts. Currently these are the podcasts I listen to regularly:

DSMA Live: On iTunes you’ll find all three of the DSMA podcasts (Live, ‘Rents, and en Vivo!) under the umbrella of DSMA Live. The accompanying iTunes description indicates that the aim of these interviews and discussions is to “empower, connect, support people affected by diabetes.” You’ll definitely learn everything you need to know about diabetes news and the people in the diabetes online community by listening regularly to these programs.

Just Talking:  A weekly podcast by Chris Snider in which he interviews guests about various topics such as diabetes, Medicine X, and video games. Chris’ interviews are unscripted and he describes them as “free-flowing but with a purpose.” His guest list is diverse and the show is always interesting.  Because my fascination with video games ended in the 1980’s on about Level 5 of Super Mario Brothers, I tend to skip the video game episodes. His podcast earlier this week was an interview with Amy Tenderich and three scholarship recipients from the recent 4th Annual DiabetesMine Innovation Summit.

NPR: TED Radio Hour:  Each week’s show has a theme and incorporates portions of relevant talks from the TED (Technology, Education, Design) Stage and interviews with Podcastssome of the speakers. Titles of recent shows have been The Source of Creativity, the Balance within Us, The Edge, and The next Greatest Generation?. The topics are always interesting and this podcast exposes me to lots of ideas and subjects that I might otherwise know nothing about.

Recently Added

Good Mythical Morning (Audio only): I learn a lot from Katy at Bigfoot Child Have Diabetes. Some of it is important and some of it is a bit odd, but oddness is the spice of life. Along that lines I was introduced to this show in Katy’s blogpost yesterday titled “Will It Pumpkin Spice?”  She provided a link to comic duo Rhett & Link’s YouTube video of the same title. I don’t know whether the audio-only version of their show will be as funny as the YouTube videos, but it’s worth a try.  How can you not want to listen to podcasts such as “Making a Dog Yawn”, “Facon Bacon Taste Test”, and “Wrapping a Cat for Christmas”?

Recently Deleted

NPR: Car Talk: I have no interest in cars but have listened to Tom and Ray Magliozzi, (aka Click and Clack, the Tappert Brothers) discuss cars, interpersonal relationships, and life in general for years. The show is no longer in production and Tom Magliozzi passed away in November 2014. An episode from the archives is released every week on NPR and the humor is timeless. Warning: you might embarrass yourself in front of your neighbors as you walk down the street laughing out loud at this podcast. Because I have listened to the show for so many years, I decided to take a break. It’s still a favorite!

NPR: Wait Wait… Don’t Tell Me!: This is a weekly comedy show camouflaged as a current events quiz. It can be very funny but I got tired of the same format week after week. So it’s off my list for now. However, the two guests last week were Itzhak Perlman and Amy Schumer. That episode might be worth a listen.

The Atlantic Voice:  The subtitle for this podcast is “3000 Miles of Opinion” and features Eric and Zeff, one who lives in the USA and the other in Great Britain. I found it engaging for a while, but not enough to keep me from exploring other options. After all, there is only so much time to listen to podcasts every week.

I use iTunes to search for and subscribe to podcasts. It’s easy to do and my selections magically show up on my iPhone. I’m sure that Android users have a similar way to do this, but I am an iPhone user because I don’t want to have to figure things out….

I am always open to trying out new podcasts. If you have a favorite, please share it in the comment section.

A Thank-you Note to Laura C.

Laddie_Head SquareDear Laura,

We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.

I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.

But Nightscout is not what this letter is about.

I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.

Today I write to thank you for your closing remarks on DSMA ‘Rents:

“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF-  None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.”   (Loc. 55:07)

In the last year and a half, the issue of Medicare CGM coverage has moved to the front page Dear Laura Cof DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.

But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.

So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.

Sincerely yours,

Laddie Lindahl

Test Guess and Go

If you have not previously contacted your Senators
and U.S. Representative to support CGM Coverage
by Medicare, please click here to go to the
JDRF page that contains links and easy-to-
follow instructions to have your voice heard.

Out of the Box

Sue B_Head SquareMany times over the course of this past year since I’ve starting blogging, I’ve made mention of the fact that for the most part I’m a very private person. I’ve never liked calling attention to myself and more then anything, after having worked for over 40 years outside of my home, I’ve enjoyed being a homebody. I love to do anything with my hands. Knitting is one of my favorite hobbies as is doing very intricate beadwork. The tinier the beads, the more I enjoy working with them. I love to read and delight in spending time in the kitchen playing around with new recipes.

When I got the opportunity to start blogging on Test Guess and Go, I realized that writing about the problems that my husband and I were experiencing getting Medicare coverage for the Continuous Glucose Monitor (CGM) was therapeutic. Before I started doing this, I often felt very alone. I have friends who have diabetes but they are all Type 2 and don’t understand the problems that my husband Marc has experienced being Type 1. Through my writings, I have had the opportunity to be in contact with many people who are dealing with the same problems Marc and I are faced with on a daily basis. For me, who had become his advocate in this quest, writing became a great way to get out my frustration at a system that does not recognize the importance of a device such as the CGM. A diabetic with hypoglycemia unawareness needs this in order to feel safe and keep others safe.

On May 1 I took a huge step towards coming out of what I refer to as “my box”. I did a Podcast on DSMA Live. For those of you who don’t know what DSMA Live is or what a Podcast is, it’s an hour long program that is similar to a radio broadcast except that it’s done through a computer and in the comforts of your own home. DSMA stands for Diabetes Social Media Advocacy. Cherise Stockley is the creator and the co-hosts are Scott Johnson and George Simmons. The mission of DSMA Live is to “promote social networking in all its forms (Facebook, Twitter, YouTube, etc) in order to educate and support all people affected by diabetes”. Cherise, Scott and George interviewed me and I was able to speak about my experience as the spouse of a diabetic and my journey during the past year fighting to get a Continuous Glucose Monitor covered by Medicare. The interview is available on iTunes under Podcasts and using the search words DSMA Live or by going to this link.

I was pretty calm leading up to the day of the interview until about an hour before I was to go on the “air”. Then the nerves started to kick in. I am not and never was a public speaker. The thought, to be honest, was pretty frightening; however I felt that it was something that was necessary if I was going to inform as many people as possible about H.R. 3710, the Medicare CGM Coverage Act. This bill was introduced to Congress in December, 2013 by Representative Carol Shea-Porter and asks for coverage of the CGM if recommended by a physician. I feel that this bill is extremely necessary for diabetics with hypoglycemia and/or hyperglycemia unawareness. I will do whatever is necessary to inform the public about H.R. 3710. I am asking everyone to write to their Congressperson and request that they co-sponsor the bill so that it can be brought to the floor of the House. Please read my Join the Crusade post to find out how you can make a difference in the fight for CGM coverage by Medicare.

The Podcast started and Cherise introduced me and much to my surprise, once I started speaking, my nerves dissipated and it was smooth sailing from then on. I I give credit to Cherise, Scott and George for putting me at ease. I was pretty surprised when I looked at the clock and saw that I had already spoken for 30 minutes and hadn’t covered half of what I wanted to cover. The second half went even faster and before I knew it, the hour was up and I still had more to say. But alas, you only get an hour and my time was up. I hope to do a Podcast again in the future. This very private person definitely came out of the “box” and enjoyed doing so.

Out of the BoxA few months back, I wrote a blog about my year of growth, first deciding to advocate for my husband and then starting to write on Test Guess and Go. My experience has taught me that growth can happen at any age (even for a Senior Citizen). It is my hope that with all the effort put into getting the CGM covered by Medicare that I will one day be able to stop blogging about the CGM and go onto other issues that diabetics deal with on a regular basis in getting coverage for much needed items. Until then, I will continue doing whatever necessary to get the guideline for the CGM changed.

Blogger Meet-up in Flagstaff

Laddie_Head SquareLast week I had dinner with three fabulous women. All of them have diabetes and all are well-known bloggers in the DOC. It was invigorating, it was fun, and it was truly an honor to spend time with these women.

We mentioned one guy a few times during dinner. No, none of us had a grilled cheese sandwich, but I bet you know whom I’m talking about. Yeah, it’s Scott Johnson. What does Scott have to do with this dinner? He is absolutely the reason that this meet-up occurred.

A little history here. I’ve been active in the Diabetes Online Community for about ten years. I’ve participated in message boards and read numerous blogs with various anonymous screen names such as Lathump or Casabby. In late 2011, I emailed Scott responding to an invitation he had made to help people in the Minneapolis/St. Paul area get connected with other folks with diabetes. In typical Scott fashion, he replied warmly and generously with the contact information for several groups. I met Scott in the spring of 2012 at a Type 1 meet-up at the Edina Panera Bread and felt like I’d known him forever.

Somehow meeting Scott brought the DOC to life for me. I saw him at a couple of other diabetes events and occasionally we emailed back and forth. I don’t remember how DSMA entered our relationship, but in January 2013 I emailed Scott that my aim for the winter was to listen to the entire archives of DSMA Live of which Scott was one of the hosts. DSMA Live was (and is) is treasure trove of diabetes stories and mid-winter I “met” Kate Cornell. Kate has Type 2 diabetes and blogs at Sweet Success: My Life with Type 2 Diabetes. Listening to the November 2012 interview, I was very impressed by Kate who seemed so composed and so knowledgeable. I started following her blog and filed it in the back of my mind that I wanted to meet her some day. More than once I would read something that Kate wrote and think that “Wow, this woman really knows her stuff and she says things that I might say”.

As the winter of 2013 progressed, I learned about DSMA Twitter Chat on Wednesday evenings. Twitter was a complete unknown to me, but I bravely indicated to Scott that I might try it out. Kerri at Six Until Me had previously published a post outlining the basics of Twitter and I followed her instructions and signed up. At my inaugural Twitter Chat, the first person who welcomed me and gave me the confidence to continue, was @JennMamaBear. I followed Jenn and was daily impressed with her photographs and Twitter skills. I followed her blog Sweet Zoo and also starting playing Words with Friends with her.

When I learned that Jenn was from Utah, I mentioned the idea of a meet-up in Flagstaff and indicated that I had always wanted to meet Kate. Jenn immediately jumped on board and said that she knew someone on Twitter from Flagstaff and her name was Jewels. Although I did not realize that Jewels was from northern Arizona, I “knew” her because of a November 2013 interview on the DSMA ‘Rents show. Jewels has Type 1 diabetes and blogs at SheSugar. One of her daughters also has Type 1 and Celiac disease, so her blog is an incredible resource for information on living a healthy life with both conditions. It is much more than a recipe source, but the low-carb gluten-free recipe that she recently featured for Crispy Cauliflower Crust Pizza is high on my list to try.

To make a long story short, these Scott Johnson-, DSMA-, and DOC-connections led to a dinner meet-up of four diabetes bloggers in Flagstaff, Arizona. In many ways this dinner was a reflection of both the kinship and diversity of the Diabetes Online Community. Despite our instant connection to each other and our thoroughly entertaining evening, our stories are really quite different.

Bloggers_Flagstaff

Kate was diagnosed with Type 2 diabetes nine years ago. She is an independent sort and with no “diabetes team” in 2005 to teach her what she needed to know, she searched the internet to learn everything that she could about diabetes. She combines oral meds with low-carb eating to keep her diabetes ducks in a row and is currently involved in a frustrating battle to convince her doctor to let her begin using insulin.

Jewels was diagnosed with Type 1 as a child and has the unique experience of being a Type 1 who is parenting a child with diabetes and celiac. She is a nurse, freelance writer, and health consultant who embraces a gluten-free lifestyle for her family. She is a Stanford Medicine X ePatient scholar and JDRF volunteer who balances her advocacy work with a crazy-active life spent biking, running, skiing, and participating in yoga.

Jenn has been living with diabetes for almost ten years. Her diabetes story is the ubiquitous tale of being misdiagnosed as Type 2 for six frustrating years before finally getting the correct Type 1 label in 2010. She is an animal lover who manages to make room for her husband and daughter in a house ruled by cats. She works full-time, is active in her church, is a JDRF advocate, and is a fun and enthusiastic travel companion.

A Type 2, a Type 1 diagnosed as a child and parenting a T1, a Type 1 initially diagnosed as a T2, and a Type 1 diagnosed as a young adult. That’s a lot of diabetes mojo at one dinner table.

Jenn and I went to the red rock country of Sedona on Wednesday. We marveled at the beautiful scenery while hiking (18,484 steps and 8.33 miles per my Fitbit), visiting local landmarks, and wandering through unique shops. Never far from the DOC, I had to take a photo of Jenn by the sign of the frog-themed Mexican restaurant where we had a delicious lunch. She needed to send it to Tina who knows of Jenn’s hatred of frogs and always sends her frog photos. Of course I “know” Tina from her September 2013 DSMA ‘Rents interview….

Sedona_Boynton

This blogpost is littered with links to many people in the DOC and once again illustrates how the diabetes community is an interwoven fabric of relationships and stories. Because I have provided photos, everything I have written is the absolute truth. That’s another bit of DOC/DSMA lore as Cherise pronounced last October after my NYC brunch with Alecia of SurfaceFine: “If there’s no photo, it didn’t happen.”

So yes, Cherise, this time there are photos and yes, it really happened.

Reflections on Six Months with DSMA Live

Laddie_Head SquareI decided at the beginning of 2013 that I was going to listen to the entire archives of DSMA Live.  To tell you the truth, I can’t even remember why I decided to do it.  So for now, I’ll say I did it “just because.”

DSMA Live Factoid:  The archived podcasts are available through iTunes (search DSMA Live) and at BlogTalkRadio.

Diabetes Social Media Advocacy (DSMA) is the brainchild of Cherise Shockley.   BlogTalkRadio states that “The mission of DSMA is to promote social networking in all its forms (Facebook, Twitter, YouTube, etc) in order to educate and support all people affected by diabetes.”  That is already out of date because Cherise has bigger plans.  She realizes that not everyone with diabetes is part of the DOC (Diabetes Online Community) and she wants her inclusive message of support to be available to everyone, online or offline.

Because I cannot do justice to the scope of everything that DSMA is involved in, I encourage you to visit the DSMA website.  In addition to DSMA Live on Thursday evenings, you’ll learn about the Wednesday night TweetChat, the ‘Rents show for parents, and the en Vivo! show in Spanish.  There is also information about the monthly Blog Carnival and the weekly WDD Blue Fridays Initiative.

DSMA Live Factoid:  The only really bad show was the inaugural show on October 28, 2010. It was an on-air technical rehearsal where Cherise, George, and Scott spent an hour asking “Can you hear me now?”

iPod Nano DSMAThe early DSMA Live shows were an extension of the TweetChat, and the hosts and featured guest discussed the questions that had been posed the night before.  Over time the shows morphed into what is now an interview and discussion format.

DSMA Live Factoid:  Three of the first five guests interviewed on DSMA Live were named Scott.

The guest list from the first 2-1/2 years of the show is a veritable Who’s Who of the diabetes community starting with the well-known hosts:  Cherise, George Simmons, and Scott Johnson.  If you spend time in the DOC, you’ll recognize the names of the many bloggers and advocates interviewed including Manny Hernandez, Kerri Sparling, Wil Dubois, and Amy Tenderich.

Karen Graffeo, a blogger and the founder of Diabetes Blog Week, made a comment that characterizes the journey of most of the people interviewed.   When asked about the background of Diabetes Blog Week, she said:  “So I started thinking that it would be great if someone did that for the diabetes blog community.  So then I thought that maybe I should try to do it.”  One after another the featured DSMA Live guests saw something that needed to be done and they did it.  They weren’t superstars.  They were people who started writing about their lives and reached out to make the world a better place for everyone affected by diabetes.

DSMA Live Factoid:  Two of the featured guests were 8 years old or younger.

Some of my favorite shows were introductions to people I had not “known” previously.  It was fun to hear the stories about their blogs, podcasts, advocacy groups, and start-up  companies.  Especially unforgettable were the crazy people who climb mountains, participate in triathlons, and drive race cars while juggling the never-ending demands of diabetes.

Also very interesting were the conversations with insiders in the diabetes industry such as Dr. Henry Anhalt, Director of the Artificial Pancreas Program at Animas, Lane Desborough, a Product Strategist at Medtronic, and Sean Gallagher, the Senior Director of Marketing at Insulet Corp (Omnipod).  DSMA Live also introduced me to Professor Jean Claude Mbanya, a physician from Cameroon who is President of the International Diabetes Foundation.

DSMA Factoid:  Art therapist and blogger Lee Ann Thill is the sole member of the 5-Time Featured Guest Club.

As my dog Abby outlined in her post yesterday, I listened to 149 DSMA podcasts in a 6-month period mostly while walking the dog. I got a lot of exercise. I got a lot of education. I got a lot of inspiration.  All great things for a successful life with diabetes.  I encourage you to put on your walking shoes and give DSMA Live a try.

Abby the Black Lab Discusses DSMA Live

Laddie:  In tomorrow’s blog post, I will write about my 6-month journey through the archives of DSMA Live.  DSMA Live is a weekly interview show hosted by Cherise Shockley, George Simmons, and Scott Johnson. DSMA stands for Diabetes Social Media Advocacy and more information can be found at the DSMA website.  Today my dog Abby is giving you a preview of the important details.

 

Abby_Crown_No background

Most dogs don’t know about DSMA Live. I do because on January 1st of this year, my owner Laddie decided that she was going to listen to all of the archived DSMA Live shows. Since that decision involved neither dog biscuits nor tennis balls, I totally dismissed it and curled up by a sunny window to take a nap.

Hearing the rattle of my harness and leash, I jumped at the opportunity for a walk. Laddie grabbed her pink iPod Nano and thus began our winter and spring of listening to DSMA Live. Well, actually I didn’t listen. My head is not properly shaped for ear phones. I just walked, stalked rabbits, and sniffed dog “Tweets” on mailboxes and fire hydrants.

Now you may not know what DSMA Live is. Neither do I. All I know is that because of this series of podcasts, I was the beneficiary of multiple long walks that far surpassed our normal dog walk frequency and length.

From January 1 until May 16, 2013, Laddie listened to 149 DSMA shows. According to her Fitbit pedometer, our normal pace was a 20-minute mile. Or as I prefer to think of it, we walked 3 miles per DSMA show. We could have gone faster, but this pace included dog potty breaks and socialization with other canine/human combos.

My favorite stat is that in 5-1/2 months, we walked approximately 447 miles accompanied by DSMA Live. That’s an average of 3.3 miles per day. I am indeed a lucky dog and my ever svelte figure is a result of my daily exercise.

Now that we are only listening to current episodes, I realize that the number of my DSMA walks will be reduced. But the addition of spin-offs such as the ‘Rents show and the en Vivo! show is a reminder that there will be a growing number of podcasts to inspire dog walks.

So to other dogs, I say: “I am a DSMA Dog. Are you?”

(By the way, I do not like Wednesday night DSMA TweetChats.  All humans with diabetes totally ignore their dogs during that hour and focus on their iPads instead.)

Abby DSMA