The 2nd Diabetes Hope Conference

Posted on April 30, 2014 by Laddie

If you are an active participant in the Diabetes Online Community (DOC), you have read about multiple diabetes conferences that seemingly “everyone else” attends. There are multi-day conventions such as Friends for Life and Diabetes Sisters and single-day events such as TCOYD and the ADA Expos. Some like the ADA Scientific Sessions are huge and designed for medical professionals. Others like the JDRF Reach & Teach U’s are sponsored by local JDRF chapters and targeted for children, adults, and families.

But you might live in a small town where nothing like this is available. You might be terrified of not being able to afford your next bottle of insulin and the cost of attending a conference, especially one out of town, is lightyears beyond your reach. You might be shy and fearful of immersing yourself in an environment where maybe no one will talk to you or you might have an embarrassing low. You might have absolutely no interest in spending your time and money to travel somewhere and talk to a bunch of people who have diabetes.

At the same time, diabetes is a nagging and constant companion. It takes no vacations. Just when you think things are going well, it slaps you upside the head and reminds you just who is in charge. Maybe you have a few complications and the crippling fear of your next eye exam or blood test has hurled you in a deep dark cave of depression. Maybe you’ve had this disease long enough to worry that your luck is about to run out and the future is lonely and terrifying.

I invite you to participate in the 2nd Annual Diabetes Hope Conference. This is a 3-hour online webinar scheduled for Tuesday, May 20, 2014 from Noon until 3:00pm Eastern Time (USA). There is no cost to “attend” this conference, but you must pre-register and space is limited.

The theme of the conference is HOPE. No matter how frightening and severe diabetes complications can be and no matter how depressing it can be to live with a lifelong chronic condition, we all need HOPE. One way to create HOPE for people with diabetes is to talk about our fears and learn from each other, the medical community, and pharmaceutical and device companies.

This is the point where I need to let you know that this conference is sponsored by Pamlab, the company behind the prescription-only nutritional supplement Metanx that can be effective in treating peripheral neuropathy. Scott Johnson, whom many of us only know as a blogger, is a consultant to Pamlab and has been instrumental in the creation of the Hope conferences. To read the story behind the development of the conference, click here. Last year’s online program had about 250 participants and the expectation is to double that number this year. Nothing about the conference is a marketing ploy and you don’t need to be concerned that your sign-up information will be used in any way by the sponsor. Okay, that’s out of the way and let me tell you more about the Hope Conference.

There are three panels for the conference, each lasting about one hour. The panelists are all A-list diabetes professionals and bloggers/advocates. For the price of a free ticket and three hours of your time, you have the opportunity to listen to and interact with some of the most influential people in diabetes. The first panel is titled The Doctor Will See You Now. Christel Marchand Aprigliano and Karen Graffeo will present questions to Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association. Once you sign up for the conference, you are urged to submit questions for this panel. What are the questions about the science of diabetes that you have always wanted to ask your endocrinologist? What do you wish you knew about ongoing diabetes research? What is the ADA doing for us?

The second panel is The Value of Blogging in Chronic Illness. Kerri Sparling and Mike Lawson will talk with Pamela Katz Ressler, the co-author of the research study Communicating the Experience of Chronic Pain and Illness through Blogging. This should be a fascinating discussion between three experts on the role of social media in healthcare outcomes.

The third panel will be Who’s in Charge? Who Says What? And Why? George Simmons will dive into patient/doctor relationships with Dr. Jen Nash. Dr. Jen is a practicing clinical psychologist, as well as author, consultant, and oh yes, a person with Type 1 diabetes.

What should you do?

Put the date and time on your calendar.
Get your ticket to participate.
Check out the website to learn more about the panelists and the conference.
Spread the word about the conference. The Twitter hashtag is #dHopeConf. You can download graphics at this website.
On the day of the conference, follow the link on your confirmation email to join the webinar. You can use your desktop computer, your phone, or your tablet.

I participated in last year’s Hope Conference and already have my “ticket” for this year. The “virtual panels” will be live streamed and the audience (that’s us!) can submit questions live to the panelists via Twitter using the hashtag #dHopeConf.

I’ll be there. I HOPE to see you there also!

M-I-C-K-E-Y M-O-U-S-E

Posted on April 24, 2014 by Laddie

Last week was a very busy diabetes week for me. I started the week in Phoenix, Arizona with the Monday meeting of Valley Pumpers. I headed back to Minnesota midweek and attended the JDRF-sponsored Adults with Type 1 program. On Saturday I joined a group of Type 1’s who hang out every other month for a couple of hours at Panera Bread. That’s a lot of diabetes fellowship for six days and is certainly not how I would have optimally scheduled my week. In fact someone suggested (you know who you are!) that I needed a new hobby. But I had a good time at each event and would have been disappointed to miss any of them.

I’ve never been one to Tweet my whereabouts and I don’t think that you want to read about the minutiae of my conversations at each meeting. I also don’t think you want to see my outfit or know what I ate or drank. What makes these meet-ups blog-worthy is the juxtaposition of them with a Saturday post by Wil Dubois at Diabetes Mine. Wil writes a weekly column called Ask D’Mine in which he thoughtfully and/or humorously gives answers to letters and questions submitted by readers. Saturday’s letter was from a longtime Type 1 who was frustrated/offended/astounded by the “Mickey Mouse” cheerfulness that he perceived dominated the newsroom at Diabetes Mine. He couldn’t understand the excitement at Diabetes Mine over new technology and new medications. He is plagued with many complications and seems trapped in a very dark place with his diabetes.

After assuring the gentleman that no one at ‘Mine finds diabetes to be fun to live with, Will eloquently explained the attitude of his fellow Type 1 writers:

There’s a difference between making hell sound like fun, and having fun with hell. We’re stuck in this nasty old broken-down house, and all we can do is choose how to decorate it. I cope with black humor. That works for me. Others among my peers are snarky, or analytical, or philosophical. There’s no right or wrong way to deal with the un-dealable.

We just manage, the best we can.

There is no doubt that those of us in the DOC have fun and revel in the absurdities of a life spent poking ourselves with sharp objects and dealing with the chronic frustration of trying to manage the unmanageable. We learn from each other, we inspire each other, we support each other. We laugh at each other, we cry together. Occasionally we bug the heck out of each other. Tweet after Tweet, blogpost after blogpost, Facebook photo after Facebook photo, and one day we discover that we have become friends.

I wonder how the gentleman would have viewed my week. Could he have participated in any of these meet-ups and come away with a little bit of appreciation for his fellow Type 1’s and a little bit of enjoyment from having spent time with them? Would an hour or two spent laughing, complaining, supporting, and learning with other pancreatically-challenged individuals have helped bring a glimmer of sunshine into his diabetes life?

I would have liked to have him join us at our Panera Bread lunch on Saturday. He could have spent time with a group of people who genuinely like each other and feel that our lives are enriched by knowing each other. He could have talked about diabetes, alert dogs, and Symlin and then learned about Scott’s new car, Ann’s two grandchildren due in December, and Allison’s first Minnesota winter. I mentioned the Diabetes Mine article and asked: “If you knew that you would lose all of your online and offline diabetes friendships, would you choose to have never had diabetes?” Without a moment of hesitation, Katie expressed the universal sentiment of “Hello, Life with No Diabetes, and Bye-bye, Diabetes Buddies!” (You’re right, Katie, but you could have at least hesitated a moment before replying.)

The gentleman from Diabetes Mine would have also seen that although we have lots of fun, none of us is naive about the evils of Type 1. How could we be after being told of Mike’s young friend who recently lost a leg due to diabetes? How could we be when there was an empty chair at the table because of the death of Dean Devalerio this winter? How could we be when we read about the eye problems that Kerri and Sarah are experiencing? How could we be???

The Diabetes Mine post was labeled Ask D’Mine: Anger Isn’t the Only Option (Part 1). I am very curious to know what Part 2 will bring us on Saturday.

But until then, I’ve been called worse than Mickey Mouse….

Blogger Meet-up in Flagstaff

Posted on April 7, 2014 by Laddie

Last 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.

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….

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.

Dear Representative Collins

Posted on March 3, 2014 by Sue from New York

On January 16th at 6:01am I sent the following private message on my Congressman’s Facebook page:

Rep. Collins, I am a type 1 diabetic approaching Medicare age and I use a continuous glucose monitor (CGM) to track my blood sugars and keep myself safe from falling blood sugars. My health insurance pays for this device, but under Medicare law it is not covered. I ask you to support H.R.3710, the Medicare CGM Coverage Act of 2014. This bill would allow Medicare to cover Continuous Glucose Monitoring Systems (CGMs) if recommended by a doctor. Thank you for your anticipated support of this bill.

I never got a response. Maybe that wasn’t the correct way to go about contacting him; I’m not sure. Perhaps I should have sent a letter in the mail or contacted him through his website.

In the meantime on February 17, Sue from Pennsylvania published her Join the Crusade post which encouraged people with diabetes or affected by diabetes to become involved in the fight for Medicare coverage of CGMS. Her post gave instructions on how to email the Legislative Assistant for Health Issues of one’s Congressperson and ask for his/her help in conveying to the Representative the importance of supporting H.R. 3710: Medicare CGM Coverage Act. A sample letter was provided.

Sue, with help from Laddie and me, followed her blogpost with an intensive push to contact other bloggers and ask them to share her story and the importance of H.R. 3710. She received responses from several bloggers who either wrote blogposts about the issue or invited Sue to guest post on their site. A big thank you to Kerri, Kim, Stephen, Diabetic Mainer, and all others who did this! And many thanks to everyone who spread the message through Facebook, Twitter, and other social media.

Last week I sent my email to Rep. Collins’ Legislative Assistant for Health Issues using the form letter included in Sue’s blog and added the following paragraph to emphasize why this is so important to me:

I have been a type 1 diabetic since 1988, dependent on taking insulin in multiple doses every single day to stay alive. Although insulin is a natural hormone, type 1 diabetics no longer make insulin due to an immune system that goes haywire and attacks the insulin producing cells in the pancreas. Many things can go wrong when taking insulin, resulting in low blood sugars (hypoglycemia) and high blood sugars (hyperglycemia). These can happen very rapidly and without warning, resulting in confusion, coma and even death. The continuous glucose monitor (CGM) is a device the diabetic can wear to alert him or her to an impending low blood sugar in time to act before unconsciousness results. I have been wearing a CGM for 4 years, and have not had a low blood sugar that resulted in unconsciousness in that time. Before I got the CGM, I would have at least one episode every month, many resulting in 911 calls and/or emergency room trips. I will be 65 next year and on Medicare, and unless this law is changed I fear I will once again be experiencing low blood sugars and trips to the E.R. or worse.

I am hopeful that I will get a response from either Rep. Collins or his assistant. And if I don’t get a response, I hope that he is so busy working on co-sponsoring the bill that he doesn’t have time to reply to me. I will happily accept that outcome.

Becoming an Advocate

Posted on February 26, 2014 by Laddie

The topic for the February DSMA Blog Carnival is: “Advocacy is a topic that is often discussed in the Diabetes Online Community. Can you be one and not even know it? What is your definition of an advocate?”

Until recently, most of my thoughts about advocacy were laced with guilt. I’ve spent a good bit of my life “talking the talk” and not “walking the walk”. I’ve been reluctant to advocate publicly for fear that the continuing responsibility of taking a stance would be more than I wanted to handle. I have been quick to criticize myself for being one who rides on the coat tails of the Real Advocates in the Diabetes Online Community (DOC).

Early November 2013 was a low point for me. November is Diabetes Awareness Month and many members of the DOC undertake huge projects to show their commitment to advocacy. As a relatively new blogger, I was totally unprepared for the onslaught of informational posts, photo projects, and tributes to diabetes heroes. I felt like a total slacker. By mid-month, my self-criticism mellowed a bit and I took a realistic assessment of what I had done and what I was doing. My 11/15/13 blogpost convinced me that although I wasn’t an established leader in the DOC, I was slowly becoming comfortable participating in advocacy projects.

I think that “advocacy” is taking something you believe in out into the world. Beliefs are easy. Sharing them with others is harder. Crusading to turn your beliefs into reality is harder still.

I find advocacy terrifying. In his “What is an advocate?” post, Stephen of Happy-Medium stated that “An advocate is not someone who is afraid of the word “advocacy“. I disagree with Stephen. I am slowing morphing into an advocate and I’m still terrified of the word. Once you move your convictions from the comfort of your brain and the safety of your soul to the outside world, there is no going back. The doors are wide open and you’re out there to stay.

On November 1, 2013 I would have said that I was not an advocate. People like Scott Johnson would have tried to convince me that I was wrong with the argument that telling my story as a blogger was enough to grant me membership in the “A Club“. My two co-bloggers, Sue from New York and Sue from Pennsylvania, would have called me an advocate because of the behind-the-scenes work that I was doing to help them with blogposts, graphics, and logistics. Many of my friends, both D and non-D, would have awarded me advocacy status because of my active lifestyle showing what is possible with and despite diabetes.

Frankly I think that I became an advocate on February 11, 2014. That is the day that I sent a letter to my family and some of my friends asking them to participate in the Spare a Rose, Save a Child campaign. My first blogpost about Spare a Rose was easy to write because I knew that most of the readers would be members of the DOC. That’s not advocacy. They already knew about it and supported it. I wrote a good post, but I was just going through the motions. It was advocacy when I pinned a scarlet “A for Advocacy” on my chest and wrote a second post to spread the message to the larger world.

I disagree with people who say that I have been an advocate for a long time despite my opinion that I wasn’t. I was a believer; I was a follower; I worked on projects. In my mind I did not become an advocate until I was able to look in the mirror and say “You are an Advocate.” I did not become an advocate until I was brave enough to say to others “This is what I believe and I am proud and strong enough to share my beliefs with you.”

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/

Join the Crusade

Posted on February 17, 2014 by Sue from Pennsylvania

Medicare guidelines do not provide for coverage of Continuous Glucose Monitors. I am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future.

In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade.

I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

The most effective step you can take is to ask your own Representative to cosponsor the bill.
Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (below) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on.

The roster of the House of Representatives along with phone numbers is available at http://www.house.gov/representatives/

If you would like to know more about my story and why I am crusading for CGM coverage by Medicare, please read my About Page and some of my previous blog posts.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later.

The only way to fight Medicare’s denial of the CGM is to get the guideline changed. The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014.

At the bottom of this post you will find clickable links to download a Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a blogger and want to know how to help, click to download this document: Dear Fellow Bloggers_Final

Please contact me if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic.

Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket. Together we can do this.

Thank you.

Please note that due to problems with spam, comments are blocked on Test Guess and Go posts older than 90 days. If you would like to make a comment or contact Sue from Pennsylvania, click here.

To download, click on this link: Sample Letter to Congress_Final

To download, click on this link: Dear Colleague_Final

Spare a Rose: Part 2

Posted on February 11, 2014 by Laddie

Today I sent a letter to most of my friends and family members. It was easy for me to write a blogpost that was read by most of the DOC. It was harder to send an appeal to my “real life” friends and family.

I know that the goal this year for the Spare a Rose, Save a Child campaign is $10,000 and we have almost reached it. I think that we can do better than that. Don’t be comfortable in your DOC niche. Be brave and send your appeal out to your co-workers, your neighbors, your family, and your friends.

728x90tag_Spare a Rose

This is the letter that I emailed to most of my friends and family.

Dear Friends and Family,

Most of you know that I have had Type 1 Diabetes for 37 years. As the beneficiary of good insurance and financial security, I have consistently had access to expert medical care along with the latest and greatest technologies. Most importantly, I have never had to worry about the availability of insulin without which I would quickly die. I have lived a good life with and despite of diabetes and hope to continue to do so for many years.

The Diabetes Online Community (DOC) is sponsoring a huge campaign this Valentine’s Day: Spare a Rose, Save A Child. This campaign supports Life for a Child, a program of the International Diabetes Foundation (IDF). Life for a Child addresses the needs of children in developing countries, many of whom die within a year of a Type 1 diabetes diagnosis because of lack of insulin and medical care. To understand the scope of the problem, please watch the short video at this site: http://www.idf.org/lifeforachild/the-programme

Spare a Rose, Save a Child is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Your loved one at home still gets flowers and you both show some love to children around the world who need it.

One rose, one month of life. A dozen roses, a year of life for a child with diabetes. http://www.p4dc.com/spare-a-rose/

I write a blog about diabetes and I encourage you to read my blogpost about Spare a Rose, Save a Child: https://testguessandgo.com/2014/02/03/spare-a-rose/

It is a rare occurrence for me to approach my friends and family about supporting programs that I am involved in. I embrace this cause wholeheartedly and encourage you to donate this week as we get ready to celebrate Valentine’s Day.

To donate, go to: http://www.p4dc.com/spare-a-rose/give/ You will use PayPal to send your gift directly to the IDF.

Please note the down arrow that gives you choices of how much to donate. Spare 1 Rose = $5 = 1 month of Life for a Child. 2 Roses = 2 Months and other options up to 2 dozen roses for 2 years of life for a child.

As we approach Valentine’s Day 2014, let us all be generous in sharing our bounty with children all over the world. To us, a rose is small. To a child with diabetes, that rose represents another day, another month, another year of life.

With thanks to all of you-

Laddie

Diabetes Art Day 2014

Posted on February 3, 2014 by Laddie

This is my first year participating in Diabetes Art Day. Lee Ann Thill started this project in 2010. 2014 marks the fifth year that people with diabetes and/or affected by diabetes are using art to share their stories and emotions along with increasing awareness about diabetes.

My art expresses my feelings about everyone in the Diabetes Online Community (DOC) and pays particular tribute to two of the brightest stars whom we have lost in recent weeks. First is Barbara Bancroft who was an active participant at TuDiabetes with the screen name of jrtpup. She was beloved by members of that community and you can read the many tributes to her here. Secondly I am honoring Dean Devalerio, a fellow Minnesotan. I knew Dean online through Facebook and was fortunate to get to know him in person through our Type 1 Saturday meet-up group. Although he was a new friend to me, others of our group had known him a long time and the community of PWD’s in the Twin Cities will have a little less sparkle without Dean. Dean was one of the early supporters of Diabetes Art Day and this year’s Art Day is dedicated to him.

My “art” uses stars made from the sparkly blue attachments collected from my Animas Ping pump reservoirs. I call it “The Stars of the DOC.”

DiabetesArtDay_2014

To view the 2014 Gallery for Diabetes Art Day, go here and then select the 2014 Gallery or browse through the artwork from previous years.

Spare a Rose

Posted on February 3, 2014 by Laddie

The Diabetes Online Community has come together again in 2014 to sponsor the Spare a Rose, Save a Child campaign. The message is simple, but powerful. Buy one less rose this Valentine’s Day and donate that $5 to the Life for a Child program sponsored by the International Diabetes Federation (IDF). Your gift of $5 will provide a month of insulin and diabetes supplies for a child in parts of the world where these life-saving medications and supplies are desperately needed. Or consider donating the equivalent of a dozen roses and giving a year of life to a child with diabetes.

The website for Spare a Rose, Save a Child was created by members of the DOC as a source of information about the Spare a Rose program. If you are a blogger, you can find links and images at this site to use to spread the important message about this campaign. This one-page information sheet will tell you everything you need to become involved.

If you wish to donate, use this donation form to send your gift directly to the IDF using PayPal. Please note the down arrow that gives you choices of how much to donate. (Spare 1 Rose = $5 = 1 month of Life for a Child. 2 Roses = 2 Months and other options up to 2 dozen roses for 2 years of life for a child.)

To donate, click on this image.

Baby Steps

Posted on January 23, 2014 by Sue from Pennsylvania

For months I have been blogging about the roadblocks my husband has faced in getting a CGMS. He used one before going on Medicare, but a replacement system prescribed by his endocrinologist was denied by Medicare. We went through Levels 1, 2, and 3 of the Appeals process and had a hearing with an Administrative Law Judge on June 26, 2013. After being promised a decision in three months, we are at seven months and still waiting for the judgement to be drafted so that we can find out if we got a “Fully Favorable Decision” or not.

In the meantime, I have been in contact with a Legislative Assistant of Representative Carol Shea-Porter [D-NH1]. In December 2013 Shea-Porter introduced a bill into Congress (H.R. 3710) which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. Unfortunately this bill is being given little chance of passing, but I believe it is an important step in bringing attention to the important issue of CGMS coverage for senior citizens.

I have also been in touch with the Global Marketing Director of Dexcom and she has indicated that together with Medtronic, they are forming a coalition to plan a big legislative push with respect to CGMS and Medicare.

I have been cautioned that it is too early to become excited about a speedy change in Medicare policy. But for me this is exciting news. I have gone from feeling totally alone in my crusade to knowing that a Congresswoman, Dexcom, and Medtronic are taking steps to influence Medicare to change the guideline. For the many diabetics on Medicare who need a CGMS and can’t afford the cost of the device and sensors (my husband being one of them), there is a glimmer of hope that victory will be achieved now that some of the big-time players are becoming involved in the fight.

The steps being taken now are just baby steps and it is still a long way to the top of the mountain. There will come a time when I, together with many others, will need to have our voices heard. We will need a groundswell of support from the Diabetes Online Community to help change Medicare policy to provide for CGMS when medically necessary for senior citizens with diabetes.

Right now we are in the early stages of figuring out how to do this in the most effective way. I urge you to keep reading Test Guess and Go as we update our progress. Please contact me if you have any information or contacts who will be helpful in pursuing this goal. If you are on Medicare (or will soon be on Medicare) and are concerned about your safety in living with diabetes without a CGMS, please reach out to me to add your name to my growing list of advocates.

Baby steps. So small, but the first steps on the road to victory.

Test Guess and Go

Even with testing, diabetes is a guess every day.

Category Archives: Diabetes Online Community