We R the Cure

Seeking Cures and Cheating Destiny


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Turning Type 1 Diabetes Into Type None: Mad Men, Women and Youth Cycle Hundreds of Miles For Each Other

CVA Ride to Cure Team Lines Up for Tune Up

The Central Virginia JDRF Ride to Cure team lines up for the tune-up ride before the Ride Day. We’re sporting our Pink and Green designer Hincappie jerseys. Real Bikers wear Pink! What a great team!

BURLINGTON, VT — This is a story about a boy, his bicycle, and his deadly disease. The story opens with this boy standing somewhere at the top of a rolling Vermont hillside on a beautiful, chamber-of- commerce-picture-postcard day near Lake Champlain in upstate VT.

Mike Anderson Ride to Cure Type 1 Diabetes Photo

First  JDRF Ride. On the training ride 1 day day before the big day, I’m letting my donors know that they are Number 1 with me. Thanks. We did this.

The view, the 70 degree temps with a slight breeze, and the sense of success  are amazing. And so is the damn flat back tire — My third in 17 miles! But that’s another story for another post.

Key words in this compelling narrative: the boy is standing at the “TOP” of the “hillside” with a “Disease.” This story, however, is not about a disease and getting sick. It is about beating that disease. Stomping on it. Tearing out its heart. Reaching inside and pounding that disease up and down into the pavement of Burlington. Boy, does it feel good to have done that! :-)

The story is my story.  This is also  the story of our Central Virginia JDRF Ride to Cure Diabetes team from Richmond. Eleven strong riders and 1 amazing team supporter — Ellen.

Most importantly, the story is about almost 300 mad men, mad women, youth, friends, family and new friends who came together on July 24-27 in Vermont to prove to each other and to themselves — that there’s NO Quit in Type 1 people.

Type 1 people are compassionate and unwavering in their quest to turn Type 1 Diabetes into Type None for the 3 million Americans living 24/7/365 with this unfortunate chronic killer.

In one weekend, this amazing group of human beings rode hundreds and hundreds of miles and raised more than $850,000 — THANKS to our AMAZING SUPPORTERS — to fund the clinical trials and research being done now by scientists who are peddling the pathways to a cure and new tech solutions.  Our Type 1 group doesn’t ride any “Yellow Brick” Road.  This is not a fairy tale. We know the road to a cure is a long, winding, steep, unfair, depressing, fearless, and physically demanding climb. Yet, we all keep coming back for one more climb each day.

I had one of the best times in my life. Met a new, formidable challenge and loved almost every minute as I delivered a whipping to Type 1.  Actually, that’s what Type 1s do every day.

Here is my Top 10 things learned about Riding to Cure Type 1 Diabetes that I posted on my Twitter page @werthecure  in the days leading up to July 26. A few more stories and key T1D takeaways — i.e. why does my Liver make its own sugar and dump it into my blood stream when I don’t want it to do that? — will be posted in future blog posts here.  Thanks for reading and engaging.

And the Burlington VT Vimeo is worth a thousand words, too.

Top 10 things I’ve learned training 4 @JDRF_RIDE

Num1A: Cycling is tough enough. Try wearing a corset. T1D, Insulin Pump, CGM
Num1: My CVA teammates R amazingly super. $50K for #T1D #burlington
Num2: U can ride, eat shotbloks, check BG and chew gum at the same time. #notafraidtofall
Num3: Must have good bike. It’s even better if #TeamMajikes has 2 U can borrow! #thankful
Num4: Cycle 2+ hours. Manage BG Carbs in route. Post-ride BG stays below 70. WTF #T1D crazy
Num5: Cycle 2+ hours. Manage BG in route. BG may soar 300 post. Liver needs more carbs?
Num6: Pick a scenic training route. Luv #Goochland , Miller Lane & touching 9-11 Memorial
Num7: Don’t leave home without your #Dexcom4 It is a must have tool. @JDRFCVC
Num8: Quality bike shorts and ButtR cream. Nuff said.@JDRFCVC
Num9: A good coach is critical.@JDRFCVC has 2 great ones Matthew and Lisa. See Number 1.
Num10: Wearing biker shorts in front of others. A Profile in Courage


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Turning Type 1 Diabetes into Type None: I’m wearing biker shorts (Ugh) and riding for a cure

Hello Friends and Supporters of Type 1 Diabetes research!

JDRF Ride to Cure Diabetes

Why do we ride? We ride to raise research funds so that Daniel Majikes, left, has hope for a brighter future and a real cure for Type 1 diabetes. Daniel and I will ride together in Vermont on July 26.

I’m taking part in the JDRF Ride to Cure Diabetes in Vermont this July, along with hundreds of riders from around the world, to raise money for JDRF, the leading global organization funding type 1 diabetes (T1D) research. My training is designed so I can ride up to 100 miles on a bike — I’m not a cyclist but I am a biker with a mission.

So far, I’m up to 29 miles of weekly bike training and heading toward a busy July riding the back roads of Goochland County — which is a beautiful area to ride. As Jackson Browne sings, “Looking at the road rushing under my wheels … Running on Empty … but I’m running on.”

Click here to visit my personal page.

I received my Type 1D diagnosis — from out of nowhere — in May 1998. That is 16 years this May 2014. It’s been a real up-and-down journey since that unfortunate starting line when my fasting blood sugar was 500+ as I sat in the exam room at Chester Family Physicians.

Today, 16 years later, I count only my blessings for all the good things that have happened to me on my journey to a cure. It’s the Type 1D people — Drew, Lauri, Daniel, Linda, Matthew, William, Susan, Fred, Tony, Kevin, Patti, Trish, Shea, Sarah, JP, Liesl, Molly, Mary, Laura, Boris, Danny, Sue, Stacy, Nicole, Kathy, Ned, Chris, Eva, Cecil, Cheryl, Larry, Melanie, Kim, Hillary, Doran, McKenzie, Sandra, Connie, Kailee, Nathan, Tom, Kim, Tiffany, Andrew and all my fellow JDRF volunteers too numerous to list — that’s why we ride.

We do ALL this for each other. We do it for ourselves. We do it for our friends and loved ones. We do it for my aunt Mary Jane, a Joslin Medalist who’s lived with Type 1 Diabetes for 70+ years and is still kicking – despite having both feet amputated due to diabetes complications. And we do it for the next generation of children and adults who have not been diagnosed yet.

Today, I’m making my biggest commitment yet. I have joined Coach Matthew Majikes and the Central Virginia Ride to Cure Diabetes team. Our goal is simple: To train together as a team, enjoy our time together, and cycle up to 100 miles in Burlington, Vermont July 24-27 to raise awareness and dollars for research that will improve the quality of life for children, teens and adults living with this chronic disease.  And one day soon — our efforts will generate a quality of life cure like the Artificial Pancreas and the ultimate goal, a medical cure that reverses or stops Type 1 diabetes in its tracks.

Will you help me on my road to a cure?

JDRF is working every day to fund critical diabetes research. And every dollar I raise helps them continue to bring life-changing therapies from the lab to the community until a cure is found. I’m  entering my second month of training on my bike. Please check back to view my fundraising progress as my Ride weekend approaches.

Can you make a donation of $25, $30 or more today? Your support, both financially and emotionally, is greatly appreciated. Please consider making an online donation today. Thank you. Together, We Are The Cure.

Mike Anderson

Click here to visit my personal page.


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D-Blogweek Post 2: He’s a poet and don’t know it — For Whom the Bell Tolls

Yesterday was Poetry Day for Diabetes Blog Week. So, I’m playing catchup already.

Click on the #Dblogweek buttoin

Diabetes Blog Week — Click to find out more details.

Instead of  trying to be a poet, I think it’s wiser to reprint something that fits a certain viewpoint — how Type 1s are living with a chronic disease that ticks, ticks, ticks in the back of our mind. Healthy looking on the outside, not so healthy on the inside.  Seeking Cures and Cheating our Destiny.  And raging against the machine.

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

These famous words by John Donne were not originally written as a poem – the passage is taken from the 1624 Meditation 17, from Devotions Upon Emergent Occasions and is prose. The words of the original passage are as follows:

John Donne
Meditation 17
Devotions upon Emergent Occasions

“No man is an iland, intire of it selfe; every man is a peece of the Continent, a part of the maine; if a clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Mannor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in Mankinde; And therefore never send to know for whom the bell tolls; It tolls for thee….”


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Should Type 1 Diabetes Advocates Have Sharp Elbows? Status Quo or Act Up — What is the right pathway?

What does advocacy mean? Is someone who advocates for a cause they believe in – not to be confused with a paid advocate — actually able to make things better, to make change happen at a local, regional or national level? Well, it’s time to find out.

Image for Diabetes Advocates

I am a new member of Diabetes Advocates. Excited to be an advocate. What can we achieve together?

I did not prepare a speech, but I am very honored and excited to have my membership application accepted by the Diabetes Advocates non-profit group. Thank you to the Academy!

The question for me to answer is — how do I actively participate and how do I add my time and voice to the growing chorus of Diabetes Online Community (#DOC) leaders who are real people, not actors on TV, who wake up each day with Type 1 Diabetes and envision a better future for themselves and the next generation of Americans who get this game-changing diagnosis. The DOC has done great things for all of us connected to diabetes.

Are we advocates or practical agitators. Or something in between? The recent article in Insulin Nation about The Juvenile Diabetes Cure Alliance (JDCA) – Practical Cure Advocates — should make all of us stop and think. What change do we advocate for? If we want more human clinical trials, higher-tech technology and a medical cure for Type 1 diabetes — it’s up to us to make it happen.

“Scientists have made careers in proving a concept in mice…we want to push against that gravitational pull” of mouse-only research, Phil Shaw of the JDCA told Insulin Nation.

I’ve been a volunteer and fundraiser for many years with the Juvenile Diabetes Research Foundation — the Central Virginia Chapter. Thru my volunteer work I’ve met some incredible children, teens, adults and selfless parents – and developed friendships with some of the best people I’ve ever met – the people you wish you never had the good fortune to meet. I’ve also been a participant in and an advocate for human clinical trials, and I see how the money raised for Type 1 research does make a difference in our daily lives. However, no matter how hard we all push, we’re still waiting for  better tech, better solutions and a future free from Type 1.

For today, it is my honor to be a new DA and to proudly post the group’s goals. Tomorrow is a new day. Together we are stronger.

Diabetes Advocates is a program of the Diabetes Hands Foundation, a nonprofit organization that brings together people touched by diabetes for positive change so that nobody living with this condition ever feels alone.

Mission
To connect advocates dedicated to improving the lives of people living with diabetes in order to accelerate and amplify their efforts

Goals 2013-2015
1. Continue growing the reach and impact of the program, by:

  • Creating paths for diabetes advocacy for members of the diabetes online community.
  • Increasing the number of Diabetes Advocates members focused on type 2 diabetes.
  • Increasing the number of Spanish-speaking Diabetes Advocates members.
  • Increasing awareness about Diabetes Advocates, starting with an emphasis in the US.

2. Increase the measurable impact of the program through:

  • Increasing member engagement in Diabetes Advocates initiatives.
  • Expanding benefits that impact sustainability and member development.
  • Hosting an annual Diabetes Advocacy Congress.
  • Consolidate Diabetes Advocates as a hub for collaboration among diabetes advocates.


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Mathematics, Mary Tyler Moore, and Standard Deviation, Oh My! We’re Gonna Make It After All

The headline, I hope, made you stop and wonder. Math. Mary Tyler Moore. Standard Deviation? Three random sounding topics that actually have one thing in common: Living with Type 1 Diabetes, of course.  The balancing act is the perfect excuse to republish some of Mary’s best quotes — about her battle with the disease — on our complicated journey toward better health and cheating our destiny.

We R the Cure blog and photo of Mary Tyler Moore at JDRF Childrens Congress 2009

Mary Tyler Moore greets President Obama during the 2009 JDRF Children’s Congress event in Washington. DC. She is flanked by her husband, Dr. Robert Levine, and boxer Sugar Ray Leonard.

“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers, and dietitians all rolled into one,” Mary has told members of the United States Congress during JDRF’s Children’s Congress. “We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars, and giving ourselves multiple daily insulin injections just to stay alive.”

I also know that a photo — or in this case a You Tube video from @Blogdiabetes friend Tony Rose — is also worth a 1,000 amazingly insightful words from me, the CEO, Editor-In-Chief of “We R the Cure.com.” Right? As I learned in Journalism 101, it’s time to get to the “So What?” or “hook your audience now” or lose them forever sentence.

After living and dying in three-quarter time with Type 1 diabetes for 15+  years, I’m actually beginning to figure out how much effort, dedication, cool technology and sheer luck it takes to “control” my blood glucose. The answer: It takes every waking second of every day, and that still does not guarantee an A1C less than 7 or eliminate the rollercoaster blood glucose ride. I love coasters, but the more you learn about this crazy,  chronic disease, and the harder you work to control it using insulin pumps, meters, CGMs and Apps — It still winds up controlling you most days.

For the past 4 months, I’ve been religiously wearing my new DexCom 4 Platinum CGM — which I love. And, as the images here will show — my standard deviation has dropped from 68 to 58 and is approaching the 50 reading which, according to Laura Adams, Certified Diabetes Educator with DexCom, is the number persons with type 1 diabetes (PWD) should aim for when seeking to control their glucose. In fact, Laura says a standard deviation reading between 50 and 40 on my DexCom ” Studio” reporting App should be the target. Fortunately, calculating the SD number is done automatically by the App based on my CGM numbers. They’ve taken the math out of my hands.

In Part 2 of this blog story, we’re going to dive deeper into the math and determine if standard deviation, A1C or something called “Glycemic Variability” is the true “gold standard” of BG control?

For now, I’ll leave you with these positive trendlines from DexCom App, which does not sync up with my insulin pump App (Diasend) — but that’s another story. Let’s call this my starting point as I aim for better control with the goal of reducing the possibility of serious health complications such as blindness, heart disease, stroke and amputations. I am in charge of my own cure, and getting better control of my numbers is the key.

The good news: My numbers are getting better thanks to technology, effort and some luck. The sobering news: this is a 24/7 battle and there’s never ever a day off.  Don’t take my word for it, take it from my Type 1 best friend, MTM:

“Chronic disease, like a troublesome relative, is something you can learn to manage but never quite escape,” Mary explains on JDRF.org’s website. “And while each and every person who has type 1 [diabetes] prays for a cure, and would give anything to stop thinking about it for just a year, a month, a week, a day even, the ironic truth is that only when you own it — accept it, embrace it, make it your own — do you start to be free of many of its emotional and physical burdens.”

We’re gonna make it after all. We R the Cure.


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Type 1 Diabetes and Pizza: Two Topics That Don’t Taste Good Together — Unless You Read This Post

In my blogging about Type 1 diabetes, I’ve tried to avoid commentary about how difficult daily life can be for PWDs ( That’s People With Diabetes).  We R The Cure is focused on how and when we’ll have cures or solutions that improve our quality of life. However, for the next two posts, I’m going to break my own rule and talk about a subject that everyone loves — Eating Pizza! That’s right, we’re talking hot, cheesy pizza with all your favorite toppings.

Pizza and Diabetes

Everyone Loves Pizza; But The Saturated Fat and Carbs Equal Trouble For Persons With Type 1 Diabetes

Well, most PWDs struggle with this tasty food. For me, I try to eat 1 slice and no more. This is my blog so I can tell you the truth, right? Recently, I stumbled over this awesome blog post by  Rich the Diabetic  and the light bulb came on. I don’t think I’ve seen the ” blood sugar ” roller coaster explained so well.  So, with ALL credits given to Rich, here is some great advice on how to balance pizza and type 1 diabetes. All in moderation. Thank you Rich!

Diabetes and pizza.  Hmmmm?  If you have diabetes, and you love pizza, you’ve probably experienced the blood sugar roller coaster that occurs after you’ve filled your tummy with as much as it can stand without exploding.  (Everybody’s done it!)  Over the last week or so, for some reason, pizza has come up in conversation with many of my diabetes peeps. Then today I read this neat story at www.sixuntilme.com about pizza, and I figure this is the universe telling me to blog about it.

I love pizza, but I don’t eat it, partly because I don’t have the math skills to figure out the bolus required for eating pizza.  Here’s what typically happens to diabetics that don’t yet understand pizza and diabetes.  Let’s say you eat 4 slices of pizza, and you start with a normal blood sugar of about 100 mg/dl.  4 slices is approximately 100g of carbs.  Notice I said approximately.  You never really know how many carbs are in each piece for a bazillion reasons.  (It’s a word.  It’s MY word.)  So you bolus for 100g carbs.  Between 1 and 2 hours later, you crash hard.  Your blood sugar is like, . . . in the 50′s.  So you eat what you’re suppose to, exactly 12 carbs, and you check, and your blood sugar is around 80 mg/dl.  Then 2 hours later it’s 270!  WTH?!

Here’s what happened.  The high saturated fat content in the cheese caused temporary insulin resistance, slowing down the initial blood sugar spike, AND hours later it causes your remaining bolus and your basal to be less effective  So you bolused for 100g, and since the fat slowed down the carbs, your blood sugar didn’t rise as quickly as it would otherwise, but your insulin still did it’s job, so you crashed.  Then you corrected at about the same time that the fat is causing insulin resistance, so you’re rising from your correction, AND you’re rising from the insulin resistance.  This can last for hours.

Now if you didn’t know this, don’t feel bad.  I only learned about saturated fat’s effect on my blood sugar and diabetes last year.  I have my CDE (Certified Diabetes Educator) to thank for educating me on this.  Have I mentioned that she’s amazing?  Now that I understand this, I have a lot less “unexplained high blood sugars”.  Below is how I deal with high saturated fat meals.

First, don’t just try this without first consulting your endo or CDE, because saturated fat doesn’t effect every diabetic the same way.  I’m just sharing what I do.  So here goes.  This first bit is VERY IMPORTANT.  When my meal has more than 25g of saturated fat, then I increase my total bolus amount by around 25%, BUT I  DON’T TAKE IT ALL AT ONCE.  I take 40-60% of it with my meal, and then I take the rest of it in a dual-wave bolus set for 4 hours.  That usually works for me, but you have to fine tune it every time depending on how much carbs, and how much saturated fat you eat in a meal.  When you’re meal has less than 25g of saturated fat, it’s less likely to affect you this way, so if you only eat 2 pieces of pizza, you don’t usually have to bother with this, but again, it’s different for everybody.  (I know, to many commas.  I don’t care. It’s my blog! *grin*)

I actually don’t eat pizza anymore because I try to follow the paleo lifestyle most of the time.  However I do eat large amounts of saturated fat every once in a while, so I still have to deal with this.  It’s been so long since I ate pizza, that I honestly can’t even remember the last time I had it?  Some diabetics will say pizza is horrible and you shouldn’t eat it, some will say anything is ok in moderation, and others don’t limit themselves and enjoy what they like.  Whatever you choose, I hope this blog helps you understand pizza’s effect on your blood sugar.


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What Does It Feel Like To Test Your Blood Sugar 8 Times Every Day: My Day of Finger Pricks

A few years ago, a child under the age of 9 years presented this to a room full of adults at a JDRF fundraiser in Richmond, VA. Her concise and beautiful talk captivated the room. It says a lot about the daily grind of a child, a parent caring for a child, or an adult living with Type 1 diabetes. More than 3 million Americans face this daily Type 1 D drama in order to stay alive.

Finger Pricks

Try this. What does it feel like to test your blood sugar or take an insulin shot — 8 times a day.

As 2012 ends and 2013 begins, it’s time to energize We R the Cure. Here’s my starting point.

I encourage you to try this simple yet realistic “day in the life” of a person living with diabetes. To feel what it’s like to test your blood sugar like me, put a rubber band around your wrist and snap it each time you see my handprint or needle. Eight times or more a day.

  1. I woke up low at 2 AM. Mom had to check me. Finger Stick.
  2. Check before breakfast and my first shot.
  3. Gym today. The nurse checks me before I can participate.
  4. Mom or I check before lunchtime. Finger Stick. Shot.
  5. Soccer practice after school. Finger Stick.
  6. Suppertime. Finger Stick. Shot.
  7. Before Bedtime. Finger Stick. Snack or Shot.
  8. Bedtime. Finger Stick. Snack or Shot. I am OK.
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