Talking Types with Lloyd Mann

I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

2016 Medtronic Diabetes Advocate Forum: Transforming Diabetes Care Together

Laddie_Head SquareLast week I had the opportunity to attend the 2016 Medtronic Diabetes Advocate Forum in Northridge, CA. This was the first time I have been invited to such an event and I found it to be a great experience. The advocacy power in the room was palpable with representatives from 5 Latin America countries, 2 from Canada, and 14 from all over the US. I was proud to be the one with gray hair in the group photos. My social media skills were not quite as adept as those of the younger attendees, but I represent a growing population: seniors living with diabetes. I felt welcomed and respected by all.

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In the last two years Medtronic Diabetes (MDT) has been reorganized to move from a product-based pump and sensor company to a patient-centric model. The MDT executives with whom we met described the future role of MDT as a “holistic diabetes management company.” They were consistent and comfortable using phrases such as:

Inspired by people

Global human insights

Behind numbers are the patient

No two journeys are the same

Together we can make change

The Medtronic Vision was shared often and highlighted on walls throughout MDT headquarters:

TRANSFORMING

DIABETES CARE TOGETHER,

FOR GREATER FREEDOM

AND BETTER HEALTH

This idealistic philosophy envisions a table where all of the players meet with the patient as the focus. Doctors, pharma/tech companies, government, payers, and patients work together to achieve better clinical outcomes and high levels of satisfaction for patients. This is easy to draw on a white board, but unfortunately not the reality for most people affected by diabetes.

What is the role of Diabetes Advocates in this vision? I like to think that we are working to bridge the gap between how things are and how things should be. We are fighting to identify and throw the “Lack of” monsters under the bridge: lack of availability, lack of access, lack of coverage, lack of education, and lack of respect.

Bridge to Good Health 2

There is a huge gap in diabetes care between the “haves” and the “have-nots.” This disparity is significant in the United States and becomes even more staggering in a global view. In the conference room of advocates we had the mother of a child who was part of an artificial pancreas trial. In contrast we had representatives from countries with little or no access to diabetes education and advanced technology. Missing from the room were people from all over the world with marginal access to insulin and diabetes supplies.

The future success of a company like Medtronic is tied to providing products and services that deliver value-based quality healthcare. Positive clinical outcomes and patient satisfaction are worthy goals. Those are big words to describe what we all want: a happy and successful life with and despite of diabetes.

We advocates have a symbiotic relationship with companies like Medtronic. They need us as the faces and voices of people with diabetes. We need them for products, services, and the ability to open doors to decision-makers. I believe that their success results in better health for those of us with diabetes. Similarly, better outcomes for me should ultimately result in a healthier bottom line for them. Sitting at the table together gives both of us a better chance for success.

Transforming diabetes care together, for greater freedom and better health.

 

Disclosure: Medtronic Diabetes paid for my travel and hotel expenses to attend the forum. As always, my thoughts and opinions are my own.

Choosing the Dexcom G5—Again

Laddie_Head SquareIn September I wrote a blogpost about the pros and cons of upgrading from the Dexcom G4 CGM to the Dexcom G5. Since my upgrade was free and I did not have to return the new and still-unused G4 transmitter, the decision to accept the G5 transmitters was a no-brainer.

Two weeks ago my transmitter warranty expired and I was once again faced with the G4/G5 decision. Most of the arguments from my September post are still valid, but probably my biggest concern was whether I liked the positives of the G5 enough to outweigh the increased cost of the transmitters. As most of you know, G4 transmitters are warrantied for 6 months but operate until they die—sometimes as long as a year after initial use. G5 transmitters are sold in pairs with each transmitter programmed to shut-off after 108-112 days (90 days + 18-22 days grace period).

Around the DOC I have seen many CGM users who have chosen to remain with the G4 for various reasons. Read Mike Hoskins’ post at Diabetes Mine for a good description of valid reasons for not changing. Recently on Facebook there have been discussions where some users are considering going back to the G4 as their G5 warranties expire. In most cases the motivation is financial although some users have been dissatisfied with the transmission range and signal reliability of the G5 system.

I have been using the Dexcom G5 since late February. Initially I was quite frustrated by the alert sound options on my iPhone and in typical fashion wrote a rant blogpost. At that point I was too new to the system to evaluate other pros and cons of the G5 platform.

Fast forward a few weeks and when once again faced with the G4/G5 decision, I chose without hesitation to remain with the G5 system. So what changed and why am I totally on board with the G5?

Dexcom G5 Choice

1. Although I never really minded carrying the Dex receiver, I quickly fell in love with not carrying it. I appreciate having one less thing in my pockets and one less expensive device to keep track of. I like how my BG numbers are displayed on the phone and how the G5 app allows me to key in calibration numbers rather than scrolling on the receiver wheel. I like the use of color in the app and the ability to see graphs in landscape mode. I appreciate the new iPhone “complication” that allows me to see my BG number without unlocking my phone.

2. When I use the receiver, I find the screen with the white background easy to read unlike the G4 screen with colored numbers and tracings on a black background. As someone who spends a lot of time hiking in bright sunlight, I found the G4 receiver impossible to read at those times when I needed it the most. (See “Sunlight and the Dex G4: A Bad Mix.”) I will admit that I dislike the glaring spotlight of the G5 screen when checking it in the middle of the night.

3. Although I am still not happy with the sound profiles on the iPhone, it is not bothering me very much. I am experimenting with using the receiver at night and my phone during the day. When I combine the musical Dexcom alerts with my Lantus reminder alarm in the evening, I feel like a digital music box.

4. Because I am a year away from Medicare and no CGM coverage, it is easy to argue that I should be hoarding transmitters and continuing with the extended life of the G4 transmitters. A great idea in theory, but it ignores the probable release of the Dexcom G6 in 2017 or early 2018. The G6 promises improved accuracy and reliability and I suspect it will quickly leave the G4 and G5 platforms in the dust. Because the G5 does not require a receiver, maybe it will be more economical than the G4. Or are you required by the FDA to purchase a new receiver every year?

Right now Medicare is a huge “unknown” in my life and I will soon be writing about my preparations and guesswork as I move closer to April 1, 2017. I hate the idea of hoarding supplies and technology that will become obsolete and possibly unused. But I am not optimistic about a change in Medicare CGM policy and am I crazy not to stock up on G4 transmitters?

5. I have not been bothered by things that could be considered flaws of the G5 system. I have experienced very few dropped data points. I have occasionally lost the signal on my phone, but that also happened periodically with my G4 receiver. The battery of my almost 3-year old iPhone 5 runs down more quickly due to the Dex G5, but not enough to be a real problem. I am still not satisfied with the lack of a robust vibrate alert on my phone, but I’m losing no sleep over it.

Summary:  As I am reminded whenever I write technology blogposts, I am indeed one of the “Diabetes Privileged.” I would of course prefer not to have diabetes and it is certainly not a “privilege” to live with this difficult-nagging-frustrating-serious-chronic health condition. But given that I do, I have many things in my favor. I am educated. I have good health insurance and am able to buy insulin and other required medications/supplies. I have a computer, an iPhone, and a connection to the Internet and the Diabetes Online Community. I have access to good food and a safe environment in which to walk and exercise. I am the beneficiary of the newest diabetes technologies and able to debate whether I want to live with the fabulous Dexcom G4 CGM or the newer and fabulous Dexcom G5 CGM.

And today I choose the Dexcom G5.

Continuing Connections: Pray for Caleb

6th Annual Diabetes Blog WeekToday’s Topic:  The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends. To read other posts on this topic, click here.

Laddie_Head SquareI have met a lot of new people during the 2015 Diabetes Blog Week. I have added your blogs to my bookmarks and to my Feedly Reader content list. For sure if you keep writing, I will keep reading. I am going to briefly mention three blogs that I particularly enjoyed this week, all for different reasons. And then I am going to highlight one blogger from last year whom I believe all of you need to know about.

Completely new to me:  One new-to-me and relatively new-to-blogging writer whom I enjoyed getting to know this week is Frank of Type 1 Writes. Frank is a young man from Perth, Western Australia who is passionate about writing and even more passionate about diabetes advocacy. I think we will see a lot more of him in future years.

Not new to me but his blog is:  Brian (BSC) is super active at TuDiabetes and I have read his message board contributions for years. I was also pleased to meet him in person at the Diabetes Unconference in March. I didn’t know that he had a blog: The Trials of Type 2 Diabetes. To say Brian is a “know-it-all” is to trivialize his research and knowledge about diabetes, especially Type 2. I look forward to both reading his blog and using it as a resource to learn more about all kinds of diabetes.

New to me but not to the DOC:  When I read Marie Smith’s posts this week, I was blown away by her writing. Then I was blown away by her story. In addition to having diabetes, Marie lives with myasthenia gravis, has survived cancer, and deals with severe pain. Her writing acknowledges that pain but celebrates and affirms life. I will follow her blog Joy Benchmarks and have already started to read the first of her two books. Marie has been blogging for much longer than I have, so we have mostly just hung out in different corners of the DOC. But then I figured out we were following each other on Twitter (@cellobard).

What you all need to know when it comes to our diabetes community:  Last year during Diabetes Blog Week, I met a young blogger named Caleb. He was a well-spoken high schooler who was documenting his diabetes life interwoven with the stories of his two siblings who also have Type 1. Definitely wise beyond his years…. Fast forward to April of this year when Caleb saw a doctor for evaluation of severe shoulder pain. A mass was found and he is now facing an epic battle against Ewing’s Sarcoma. Ewing’s Sarcoma is an aggressive bone cancer that affects mainly children and adolescents.

Caleb needs the support and prayers of everyone in the diabetes online community. His blog is Type One Trio and there are occasional updates from Caleb and his family. Caleb is reassured that he will have the strength he needs because he is a Child of God. He recently quoted scripture that is giving him strength as he begins a battle that no one should have to face. Caleb is a child of our diabetes community and regardless of your religious beliefs, please pray for him.

“Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. 

 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.”

 II Corinthians 1:3-5Type One Trio

My Most Favorite Ever

6th Annual Diabetes Blog WeekToday’s Topic:  If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.) To read other posts on this topic, click here.

You probably noticed above that today’s topic was my!!! idea in response to Karen Graffeo’s request for help. I selfishly suggested this topic because I have a favorite sentence that I always read with astonishment that I wrote such a beautiful thought. The sentence has nothing to do with diabetes but it is part of a blogpost that celebrates all types of diabetes, dogs, cats, and DOC friends.

But look at me taking credit for this sentence! It was actually written by Abby the Black Lab whom many of you know as a guest author for Test Guess and Go. Abby is quite popular and her posts get more readership than mine. Basically who doesn’t like dogs more than diabetes? My favorite blogging sentence is part of my favorite post and was written by Abby. The sentence follows and you probably need to read the whole post to put it in context:

“It is a magical glimpse of heaven for a lucky black dog who is showered with love by a beautiful princess gray cat.”

The entire post as reprinted from 9/09/2013 follows:

The Great Divide in the DOC

Abby with Abby Crown_no backgroundI’m Abby the Black Lab and it has been a while since I have written a blog post.  Lately I have been utterly distressed by a great divide that I see in the DOC (Diabetes Online Community) and I think it is time to bring this to the attention of my readers.  You probably think I’m going to start talking about the Type 1 versus Type 2 wars that periodically surface on the Internet.  Are you kidding?  My subject is not nearly as trite as that.

No, it’s the dog people versus the cat people.  The canines versus the felines.  The lovable, loyal, goofy, tail-wagging dogs versus the slinky, aloof, meowing and menacing kitty cats.

The cat aficionados have long been led by Kerri from Six Until Me whose cat Siah is a media star who poses in laundry baskets and attempts to dominate the DOC as an “internet celeb-kitty.”  The dog people are more decentralized in their leadership.  Canines have conceded Twitter to the cats, but think that we rule Facebook.  The blogosphere is probably a toss-up, but my opinion is that dogs are truly superior in their contribution to their PWDs (people with diabetes).  Duchess is a diabetes service dog who daily keeps her owner Tarra safe.  Meri’s boys are protected from the abyss of low blood sugars by Lawton the Yellow Lab.  All human hearts have melted seeing photos of Kim’s corgi watching over the new baby “Rabbit.”  Black labs like Riley owned by Mike Hoskins insist that their owners exercise by taking them for daily walks.

Cats meanwhile are tiptoeing across keyboards and writing meaningless blog posts with the tag line “zxzxzxdjjj.”  Pissed-off and non-sleeping kitties are considered newsworthy.  Oh yeah, Chris of @iam_spartacus fame has some feisty looking cats and @KarenBittrSweet claims to have the world’s cutest cat.  Videos of Grumpy Cat are ubiquitous, but if I want to see grumpy, I can look at my owner Laddie when her meter says 286.

Fortunately the DOC universe of cats and dogs has recently been in a state of equilibrium with only a few ripples of discord.  The dog people tried to sneak one under the rug in Twitter and Facebook with the purchase of a Scottish Terrier named Bella by Cherise.  Someone needs to tell Bella that if she wants to become an icon in the DOC Canine Hall of Fame, she should learn to walk on a leash.  Also tell her that if she’s going to be a supporter of people with diabetes, lancet devices should not be on the menu.  The cat people have lost some heroes as Kerri and Pancreassasin mourn their beloved friends who have gone to the scratching post in the sky. (RIP Prussia July/2013 and Pancreassasin 2week kitty August/2013).

But the calm has been shattered!  Earlier this month the cat people added a new Abby_Loopy2superhero to their roster in the guise of a young child named Birdie.  Smiles and cute Batman Princess costumes are not adequate to camouflage the chaotic schemes of this young and seemingly innocent feline-loving child.  With no attempts to disguise her evil intent, this child suggested that the family cat Siah was lonely and needed a friend called…. Loopy.

The Loopy hullabaloo has not been all.  Another scandal has been exposed in the DOC and I, Abby, a supporter of all people with diabetes, have been accused of consorting with the enemy.  A photo of a certain black lab being nuzzled by a gray feline has been splashed across the headlines.  I confess.  I am guilty.  I like cats and cats like me.

Abby Headlines

Every year I put “Kitten” at the top of my Christmas list.  Unfortunately my owner Laddie is allergic to cats, so no personal kitty is in my future.  I am extremely fortunate that when Laddie travels, I get to go to Linda’s house and visit my friend Nikki.  Nikki is a shy cat, but I have learned to approach her slowly and lay my head down acknowledging that cats are supreme.  She rewards me with purrs and caresses of her head against mine.  It is a magical glimpse of heaven for a lucky black dog who is showered with love by a beautiful princess gray cat.

My romance with Nikki has some important lessons for everyone.  Although you seemingly-civilized people with Type 1 diabetes sometimes argue with those who have Type 2 diabetes, you pancreatically-challenged doofuses should remember that you are stronger together than apart.  Diabetes in all of its evil forms is the enemy and you should join hands and conquer it together.

More importantly, we dogs and cats should toss aside our petty differences and stop the harassing hisses and barks.  With a united army of canines and felines, we can fight a cosmic battle against our common enemy.   A enemy who taunts and teases us in our own yards and through our own windows.  An adversary who seems to think that dominance is achieved through water-skiing videos.  We have seen the enemy and the enemy is……..SQUIRRELS!

Abby Crown Against Squirrels

Other Posts by Abby the Black Lab

Abby the Black Lab Discusses DSMA Live

Abby the Black Lab Discusses Nutrition

A Diabetes Poem by Abby the Black Lab

Abby the Black Lab Discusses Community

Postcards from the Diabetes UnConference

Laddie_Head SquareLast Friday I drove from Arizona to Las Vegas to participate in the Diabetes UnConference. It is trite to say that words can’t describe the experience, but Words Can Not Describe My Experience. Three days later I am still exhausted. But three days later I am invigorated with images of new friends, old friends, smiles, tears, hand claps, Diet Pepsi, red wine served by charming bartenders, hugs, lows, highs, and flamingos. I don’t want to start listing names because I know that I will mess up and forget my most cherished friends. But I do want to thank Christel Marchand Aprigliano of The Perfect D for following her vision of “The only peer-to-peer support conference for adults with Type 1 and Type 2 diabetes.”

As I struggled to find a way to express my impressions of a magical weekend, I stumbled upon a pile of postcards ready to tell their story:

Postcards_All_2

Spare a Rose, Save a Child 2015

Spare a Rose 728x90tag

Laddie_Head SquareAll of my 2015 blogposts have been about #firstworldproblems such as the Animas Vibe, my Dexcom G4, an iPhone trick, and a recent experiment of using long-acting insulin along with my pump.

But children in developing nations are dying because they have no access to insulin of any type.

I can be a grouch when diabetes technology does not live up to my expectations. My biggest problem these days is whether I should keep my current insulin pump or upgrade to the newest model. I joke about the excitement of switching from a hot pink continuous glucose monitor to a blue one.

But children in developing nations are dying because they have no access to insulin of any type.

I am 62 years old and have lived with Type 1 diabetes since I was 24 years old. Last week my Fitbit says that I walked 105,292 steps or almost seven miles a day. I went out to lunch three days in a row. I have very few complications of diabetes. I am indeed blessed.

But children in developing nations are dying because they have no access to insulin of any type.

I am writing this blogpost on my laptop computer at my kitchen table with an iPhone and iPad sitting next to me. My refrigerator is full of food and most importantly, there is a 3-month supply of insulin in the deli drawer.

But children in developing nations are dying because they have no access to insulin of any type.

What if there was something that you could do to make a difference for these children? There is and you can by supporting the Spare a Rose, Save a Child campaign sponsored by the Diabetes Online Community.

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. Consider donating $60, the equivalent of a dozen roses, and giving a year of life to a child with diabetes. Even more generously, make a pledge for a continuing monthly gift.

If you need motivation to donate, please watch this short vlog by my online friend Kelly Kunik at her blog Diabetesaliciousness©.  (To my contemporaries who might not be as hip as I am, a vlog is a video blogpost. I am trendy enough to know what a vlog is, but not so cool that I have ever done one….)

As we approach Valentine’s Day 2015, let us 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.

I made a donation today and hope that you will too. To donate using PayPal, click here.

To Donate, Click on the Image

To Donate, Click on the Image

Celebrating Tom Beatson

Laddie_Head SquareYesterday Tom Beatson of Phoenix, Arizona celebrated his 72nd anniversary of living with Type 1 diabetes. I’ve been lucky to get to know Tom in recent years through Valley Pumpers, an insulin pump support group that I attend during the winter months in Arizona. Many people in the diabetes community know Tom through Facebook and other online venues. He’s an incredible guy who is always kind, inspirational, smart, and opinionated. Tom has participated in the Joslin 50-year Medalist Program and supports diabetes research through the Joslin Diabetes Center.

If you’d like to learn more about Tom, check out this TuDiabetes interview from January 2013. In this video he and Richard Vaughn (diagnosed in 1945) discussed living with Type 1 diabetes for over 70 years.

Below you will find Tom’s story as he shared it in an email and on Facebook yesterday. I asked Tom if I could post his statement and photo here today and he graciously gave me permission.

With no further ado, here is Tom Beatson in his own words:

“Today is my anniversary. Exactly one year after Pearl Harbor was the first day I was sick with T1D Type 1 Diabetes. I was 10 years old.  Two days later Dr. Wright made a house call and decided I needed to be in the hospital. Since my mother didn’t know how to drive, Dr. Wright drove me and my mother to the hospital in his car. Shortly after arriving at the hospital I lapsed into a coma. Of course, insulin saved my life. I don’t have any records or recollections by my parents, but I think I was comatose for several days, and remained in the hospital for a month. That was 72 years ago, in 1942.

Lots of people have asked me how or why I have survived through all these years.  I don’t have a magic answer for you.  I take one day at a time and do the best I can. It’s been pointed out to me that I have a lot of determination, and that has been very helpful.

Another thing that has been helpful is exercise. When I was about 45 I started riding a bicycle and did that for 35 years. During those years I accumulated 106,000 miles. I have stopped riding currently because of soreness in my lower back, but hope to resume bicycle riding.

Back in the 1940s the insulin pump hadn’t been invented yet, so I used shots every day  for 52 years. That was long enough to earn me a 50-year medal. Then in 1995 Dr. Levy started me on the insulin pump. My control has been much TJB 11-9-14 at 7.26 PMbetter using the pump. I am currently on my fourth pump – the Animas Ping. It was preceded by the Cozmo, 508, and 506. Since I’m on Medicare, they won’t approve a CGM. Their rules are not medically sound. My daily dose ranges between 35 and 45 units of Humalog insulin.

Since I am already 82 I’m not very optimistic about seeing a cure within my lifetime. But I’m keeping a close eye on the Bionic Pancreas that Dr. Ed Damiano is working on at Boston U.  His goal is to get FDA approval by 2017, and that’s when I reach 75 years of T1D, so I’m hoping to be able to get a Bionic Pancreas in time for my 75th anniversary.

Unlike some of you who still claim no complications, I’ve been dealing with retinopathy for 50 years. It remained background until about 10 years ago, when one eye became proliferative. And I’ve got kidney problems. But I have no neuropathy and no gastroparesis. My hearing is still good.  I’ve had chronic lymphocytic leukemia for 20 years with a white cell count around 60,000 but it never gets high enough for them to treat (80K). And I have colitis.

What was the biggest mistake of my life?  I never got married, and have lived alone for more than 50  years.”

Thank you, Tom, and best wishes for many more years of good health with Type 1 diabetes. I’ll give you a call in three years and see how you like your 75th Anniversary gift of a Bionic Pancreas!

Playing Nice in the DOC Sandbox

Laddie_Head SquareI try to be open-minded when it comes to my online/offline interactions with people affected by diabetes. On one hand, I can be as snarky and self-centered as anyone. On the other hand, I have learned that being kind and supportive gets easier with practice and soon becomes a very nice way to lead one’s life. I have definitely had good role models in the DOC and I thank you all. I am also old enough that I have learned that there is no right answer to every question and no guarantee that doing the “right” thing will guarantee good results. So I try to be understanding of other people and usually I succeed.

Last weekend I unwittingly became the the central character in an unpleasant diabetes online experience. Neither the group nor subject is important. I have pretty thick skin and was more stunned than hurt by the barrage of comments. I suppose one problem with the Internet is that although you can control what you write, you can’t always control how your words and intent are received. I don’t pretend to be perfect and am willing to accept responsibility for my missteps although I still don’t quite understand what happened.

I’ve spent a fair amount of time this week thinking about my responsibilities as a member of the DOC. I had a recollection that some blogger once outlined behavior suggestions for the diabetes community. The few longtime DOC bloggers whom I asked about this didn’t think that such a thing existed. Chances are that I once read an article about general online etiquette and that stuck in my mind.

Whenever you have interpersonal problems, I think that the best thing you can do is take a deep breath and reread Robert Fulghum’s list of things to be learned in kindergarten. It always makes me smile.Kindergarten Rules_3

Now that we’re feeling all warm and cozy, let’s consider the DOC and whether there should be a code of conduct. The bloggers whom I recently contacted and the DSMA Tweet Chat of 9/3/14 were unanimous in the opinion that there should be no rules for the diabetes online community. According to one writer, rules would go against the “organic flow” of the community. I think that means that we’re an opinionated and rowdy bunch who have a modicum of common sense along with compassion and mutual respect. But when all is said and done, a few rules did come out of the discussion.

Here you go, DOC Friends!  (with special thanks to K-bloggers Kerri, Kelly, and Kim)

DOC Rules

And I’m going to add one more:

4. If someone screws up, give them the opportunity to learn and then forgive them.

If four rules are too much for you to deal with, just go with #3.

Don’t be a Jerk Face.*

That covers just about everything.

* a descriptive term that only Kerri could think of

Blogrolls….

Laddie_Head SquareLast week I spent two hours updating my Blogroll.  The process began with a print-out of my current blogroll which I compared to my bookmarks for diabetes blogs in Safari. I found about 25 bookmarks which needed to be added to the list. One by one I typed in the name of each new blog and embedded the link to the website.

I had known for months that I needed to work on my blogroll, but the chore stayed at the bottom of my To-Do list.  What inspired me to finally tackle the project was the Wednesday, Sept. 3 DSMA TweetChat. The subject was whether the Diabetes Online Community (DOC) should have a governing body along with standards of conduct and lots of rules. No one seemed to think that was a good idea and the discussion moved to the topic of helping newcomers to the DOC find a foothold in the maze of diabetes social media.  Blogrolls were mentioned.

Blogrolls show up in many different forms.  Some like mine are long lists by category (Type 1, Type 2, Parent) with no description or rating of the blogs.  Others are shorter lists with titles such as “My Favorite Blogs” or “DOC Friends”.  One of my favorite blogrolls is by Scott at Rolling in the D because he has personalized his list with brief and occasionally witty descriptions of each blog/blogger. A nice feature on Blogger sites is a “live” blogroll that automatically updates with recently published posts.  Many DOC writers have chosen to not have blogrolls at all.

Blogroll_!What is the purpose of a blogroll?  When I began reading diabetes blogs many years ago, blogrolls were a magical pathway to “meeting” other people with diabetes.  Without Twitter and Facebook, there was really no other way to learn about other websites.  The first blog I read was either Scott’s or Kerri’s and then it was a dot-to-dot adventure finding other people sharing their stories.  My guess is that newcomers to the Diabetes Online Community (DOC) still use blogrolls in this fashion while most blogrolls are largely ignored.  My blogroll had about 200 views in the last year.  I hope that some viewers used my list to find other blogs.  Unfortunately I suspect that most of the views were just by other bloggers seeing if they were on the list!

The main reason that blogrolls are impossible to keep current is because there are now hundreds of diabetes blogs and new ones appearing all of the time.  If you check out most blogrolls, you will find a dated list that highlights many established D-blogs while including few new blogs and being littered with many blogs that have been abandoned for years.

As an experiment, I checked out the blogrolls of the first twenty blogs listed in my Safari bookmarks.  I chose 3 favorite blogs in addition to my own to see if they were listed in any blogrolls. These 3 blogs are by prolific Type 1 writers who like me have been around for about 1-1/2 to 2-1/2 years. Of the twenty blogs I checked out, 5 did not have blogrolls.  My blog was listed on 5 out of the remaining 15 blogrolls.  Another fantastic newish blog was listed on only 3 blogrolls.  One was seen on 6 out of 15 and the last one had more presence being on 9 out of 15 blogrolls. These stats are not meant to criticize anyone; rather they emphasize how flawed most blogrolls are.  Even if you are able to keep adding all of the new blogs, when do you take an inactive blog off the list?  The ultimate criteria is probably when the link doesn’t work anymore.  But how old is too old?

When blogrolls were mentioned in the September 3 DSMA TweetChat, Scott Johnson immediately tossed out the question of the day. Typical of DSMA, the discussion quickly went off-topic and morphed into shrimp rolls and carb counts.

Blogroll Tweet All

How do I feel about this?  On one hand, it is frustrating to be left off lists by people whom I know read my blog regularly.  At the same time, I know that it is meaningless because I don’t think blogrolls are used for much of anything and most of us rarely look at them.  So after this post I think I will go back to totally ignoring them.

Back to the September 3 DSMA TweetChat.  Although I don’t believe that the DOC needs a governing board or rules, I wonder if something like a DBlog Central website would be useful.  This site could maintain a complete and updated blogroll with descriptions and tags to help users navigate the DOC.  A central website could also be a hub for sharing information with all diabetes bloggers on things like starting a blog, finding diabetes graphics, Twitter names, current campaigns of the DOC such as Spare a Rose, and a calendar of events.

I can’t envision how something like this could be created.  Maybe we should have a governing board for the DOC and “they” could set up the website….  Yeah, right!  I think that most of us would say that the magic of the DOC comes from its somewhat chaotic nature and no one wants to regulate its constant evolution. Why should we change something that isn’t broken?

In the meantime I plan to continue to have a blogroll.  If you’re not on it and would like to be, please contact me.