Becoming an Advocate

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?”

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Laddie_Head SquareUntil 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.

Advocate5This 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

Sue B_Head SquareMedicare guidelines do not provide for coverage of Continuous Glucose MonitorsI 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/

CGM CrusaderIf 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

Sample Letter

To download, click on this link: Dear Colleague_Final

Dear Colleague Email Blast

Spare a Rose: Part 2

Laddie_Head SquareToday 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.

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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

Miscellany

Laddie_Head SquareToday’s post is a bullet point view of a few things that are relevant to my life these days.

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  • I seem to be able to relate almost everything in my life to diabetes. A few weeks ago I was playing golf and needed to know the distance to the pin so that I could select the proper club. I used my laser range finder which measures the exact distance to the hole by zeroing in on a crystal receptor on the flagstick. Someone asked me what the distance was and I confidently answered 161 yards. One of my playing companions had also taken a measurement and indicated that her device read 125 yards. I took another reading and also measured in the 120’s. Had I use the erroneous reading and hit a good shot, my golf ball would have gone into the desert past the green and resulted in a double or triple bogey. My immediate thought was that this was just like a blood test with diabetes. If my meter gives an erroneous reading, I over- or under-dose my insulin and end up with an unexpected and undeserved high or low BG reading.Golf Desert
  • I write most of my blogposts on my iPad and find that I make the same typing mistakes and get the same crazy autocorrects over and over again.  My pinkie finger must not reach far enough for the “a”, so my most common mistake is to type “disbetes” instead of “diabetes”. Although I get a red line under disbetes, it does not autocorrect to diabetes. Some people would love to change the name of Type 1 diabetes, but I don’t think “disbetes” will have many supporters. A second mistake I often make with diabetes-centric writing is to write “lower card eating” instead of “lower carb eating”. One would think that I have an Ace of Spades on my plate instead of a piece of turkey. An email to Sue from New York after her sleep consultation ended up with two mentions of her “creep” consultation.  Good thing I corrected those mistakes before sending the email although Sue did think the sleep study was somewhat creepy.                                                                             Plate Turkey
  • Autocorrects also sabotage my writing.  “Bolusing” is often rejected by my iPad which insists on  a substitution of “blousing”. The statement that I bloused 3 units of Novolog with my lunch is somewhat nonsensical. This is the third blogpost in a row where I have mentioned the podiatrist/author Neil Scheffler. The rejection of “Scheffler” for “Scheduler” brings to mind James Bond and Batman villains.  Holy Guacamole, Batman, stay away from the The Scheduler!                                            The Scheduler
  • Olympics Trivia.  Late in January Abby the Black Lab’s sister was on the NBC Nightly News with Brian Williams in a feature about the threat of terrorism at the Sochi Olympics. Because black labs don’t have an aggressive bone in their bodies, that statement warrants an explanation. Abby’s littermate, Jackie, belongs to a Minnesota friend who is going to Sochi to watch her daughter compete in one of the skiing events. My friend was interviewed at her home about whether the terrorism threat was waylaying her family’s plans (it’s not) and the beginning of the clip showed Jackie bouncing and jumping up. “Not very good behavior” thought Abby who is jealous of her sister’s celebrity status.                                                                                                  Abby and Jackie Sister2                                                 
  • Super Bowl Trivia. Pete Carroll, coach of the Seattle Seahawks, lived down the street from us when he was a Defensive Backs Coach for the Minnesota Vikings in the late 80’s. His two oldest children are the same age as my boys and they went to school together. Extremely nice family and congratulations to Pete and the Seahawks for a job well done.                                                                                    Seahawks
  • My Arizona podiatrist is now my new best friend because the cortisone shot on Tuesday has returned my heel to A+ status. Hopefully this injury will not return.                                                                                                                                         Call the Podiatrist_2

That’s it for today, my friends.

Jinxed Again!

 Laddie_Head SquareA while back I wrote a post about how I jinx myself when I think things are going well. The mere hint of positive vibes is enough to send my life into a downward spiral. In late January I wrote a post reviewing the book Things You Need to Know About Diabetes and Your Feet by Neil M. Scheffler, DPM, FACFAS. I talked about the importance of foot care along with mentioning (or was it boasting?) that I had no foot problems and had never seen a podiatrist.

Fast forward to two days after that post. I was walking with a friend and out of nowhere started having pain in the back of my right heel. Nothing popped; nothing twisted; it just started hurting. I finished my walk and figured that the pain was minor and would go away. I hobbled around for a few days and continued with most of my regular activities. I iced the foot often and used a topical gel for pain relief. Once or twice when it was really painful, I took a couple of ibuprofen tabs. That is a big no-no for me because I am already on a prescription NSAID for my arthritis. The ibuprofen really helped, but it is safely back in the medicine cabinet. If the pain is so bad that I feel I need it, I should be talking to my doctor and not abusing prescription or over-the-counter medications.

The pain continued to get worse and my next step was to quit all activities except for sitting on the couch and icing the heel regularly.  Every so often it seemed as though it was better, but a walk across the room quickly dissuaded me of that notion.

I think that you can guess where this story is going. Suffice it to say that she who had never seen a podiatrist before has now seen a podiatrist.

Call the Podiatrist

Tuesday I went to a foot doctor recommended by a friend and had the heel checked out. Fortunately x-rays ruled out anything like bones spurs and he believes that it is an inflamed nerve. He injected the heel with an anesthetic steroid concoction and I am supposed to go back in two weeks.

The doctor seemed very knowledgeable about my feet. Because of my diabetes he did an extensive visual inspection and checked for pulses and sensation. After asking how long I had had diabetes, he did a little math in his head, and questioned how I could have Type 1 (Juvenile Diabetes) because I had been diagnosed as an adult.  Argh!  Very nicely I indicated that Type 1 is the result of an autoimmune attack and age of diagnosis has nothing to do with it. End of conversation.

In all of my years with diabetes, this is the first time that I have ever had a steroid injection. I was expecting a huge jump in my blood sugars, but so far the effect has been minor. Initially I used a temporary basal of 130-150% which was similar to what I had used for couch camping.  Yesterday I started to go low and returned my basals to normal. Overnight I started to run somewhat high and I have upped my basals again with a few correction boluses. So far the pain relief from the injection has been worth any disruptions in blood sugar.

The first afternoon after the injection was nirvana because the anesthetic was still active and I had no pain. Two days later I can walk normally and that’s a huge improvement. I am still taking it easy and will continue to ice the foot. Abby the Black Lab was thrilled to get a walk around the block yesterday after two weeks of home confinement. I checked with Dr. Google and he/she/it indicated that it usually takes a few days for a steroid injection to take effect and I am optimistic that I will continue to improve.

Have I learned anything from this?  Absolutely YES! I think that I have learned to keep my mouth shut. I now realize that blogging is a threat to my health and I should take up a less risky hobby such as sky-diving. When it comes to reviewing books about feet, I’m going to stick to The Foot Book by Dr. Seuss:

Left foot, left foot,

right foot, right

Feet in the morning

feet at night

And that’s all I have to say on the subject.

Diabetes Art Day 2014

Laddie_Head SquareThis 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

Laddie_Head SquareThe 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.

728x90tag_Spare a RoseThe 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.)

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.

To donate, click on this image.

To donate, click on this image.