Wow!

Posted on December 17, 2013 by Laddie

On Monday evening, December 16, I had the privilege of listening to Haley Doyle talk about her introduction into the world of Type 1 Diabetes. Everyone with diabetes has a unique and powerful story, but Haley’s story hits it out of the ballpark.

Haley was the featured speaker at the December meeting of the JDRF Adults with Type 1 in Bloomington, MN. Here is her bio according to the JDRF promotional email:

Haley Doyle is currently a Senior at the US Naval Academy in Annapolis, Maryland with a double major of Aerospace Engineering and Russian. Haley’s road to that prestigious school reflects an incredible personal story of commitment, intelligence, and a passion for life that is rarely found. Her story will emphasize family, opportunity and living life to the fullest despite being diagnosed with T1D during her Freshman year, jeopardizing her military ambitions and career path. Haley Doyle is an overachieving, yet humble, young woman from Kansas, who has a story that you will definitely want to hear.

Haley was diagnosed with Type 1 Diabetes in February of her Plebe year at the United States Naval Academy in Annapolis, MD. Most of us would guess that she would have immediately been dismissed from the service academy, but with grit, determination, and support of her commanding officers, she persevered through 3+ years of medical boards, recommendations for dismissal, rigorous training missions, and a challenging academic load to be on track for graduation in the spring of 2014.

Lest you think that this is a Pollyanna story, Haley will be medically discharged from the Navy upon graduation. The civilian workplace will be the beneficiary of the tremendous talents and military training of this young woman with a defective pancreas.

Haley Doyle – JDRF Adults with Type 1 – 12/16/13

I asked Haley if she thought that people with Type 1 should be able to serve on Navy ships or at the front lines of military conflicts. Like me, she has no definite answer. She understands that a low blood sugar or a broken pump could jeopardize an officer’s ability to effectively complete a mission or provide leadership to guide and motivate the soldiers in her command. But she has climbed mountains in Alaska, she can do a million push-ups, she has scuba dived in the Caribbean, and she has completed a JDRF 100-mile bike ride. I don’t know the right answer and neither does Haley.

I would argue that rather than lose the talents of anyone like Haley, the Navy should commission her in a restricted line corps position. Maybe someone with Type 1 Diabetes shouldn’t command an aircraft carrier in the Gulf of Yeman or be pilot of a F/A-18C Hornet. But she can design bridges in the Civil Engineering Corps. She can coach the varsity women’s crew at the Naval Academy, she can provide inspiration for numerous high school students thinking of entering the military, and she can serve her country. As a tax-payer, my money to train Haley has been wasted. As someone with Type 1 Diabetes, I know that our country has squandered its investment in the education of a fellow T1. I am disappointed and I am angry.

But thank you, Haley, for reminding me how strong and talented we T1’s are. And thank you, JDRF, for sponsoring our Adults with Type 1 group. You have introduced me to Tim who is a Joslin Medalist after living with Type 1 for 50 years. And Wally who is at 49 years. And Connie who long ago passed 40 years with Type 1. Then Christine who bikes in JDRF rides and this year will raise $10,000 for diabetes research. And Katie who taught me about arm and hip sites for my Dexcom CGM. And Chad who is quiet, but doesn’t miss a thing when it comes to Type 1. Plus Doug who runs in marathons and just welcomed(?) his sister into the Type 1 universe. We missed Cynthia at the December meeting, but she constantly reminds me that I need to nurture my soul as well as take my insulin. Scott also missed this presentation because he is in Europe with the mySugr guys. I am inspired by all of you and proud to be your friend.

Wow!

A Special Candy?

Posted on December 12, 2013 by Laddie

On Monday I published a blogpost complaining that I had been stuck on Level 149 of Candy Crush for over a month. Shedding the tears of my candy heart persona, I whined about the frustrations of Candy Crush and expounded on the similarities and differences between diabetes and Candy Crush.

Just a few days later one of my problems has been solved. Less than thirty-six hours after that post, I managed to pass Level 149 with moves to spare and a reward of three stars. Was it skill or dumb luck? Was the blogpost a special candy? A priceless booster that I earned through intelligence, good looks, and hard work? I have no idea and I don’t care. All I know is that the dancing girl jumped up and down to celebrate my victory. I can finally move to Level 150 and cruise along for a while until I become mired in another frustrating impossible-to-pass level.

Lest you get too excited about the power of the written word in the blogosphere, I only solved one of my problems. I still have diabetes.

Just a Game of Candy Crush

Posted on December 9, 2013 by Laddie

I’ve been playing Candy Crush Saga for eight or nine months. It was fun at first as I sped through the easy levels. Now I’m not even sure that I like it anymore. I tend to get stuck on hard levels for weeks at a time. I refuse to invest money in the game and never purchase boosters and special candies that might speed up my journey to victory lane. I play quests for three days to unlock new levels rather than pay $.99. I don’t beg my Facebook friends for extra lives because I’m usually relieved when I run out of lives and don’t have to play anymore.

I’m currently on Level 149 and am not convinced that I will ever make it to Level 150. There might be some element of skill that I’m lacking, but I suspect that only a burst of pure luck will propel me past this roadblock. I know that I have gained some Candy Crush mojo because whenever I play the beginning levels for fun, I find them to be much easier than they were the first time around. But in general my experience has been that when I finally conquer a difficult level, it’s primarily the result of luck with lots of candies and explosions rather than any convergence of skill and strategy. I always feel relieved to move to a new level, but rarely do I revel in a feeling of accomplishment because I never know why I finally won.

Most of us find Type 1 diabetes to be a cruel taskmaster. It’s hard to keep our blood sugars in range even when we make good decisions and follow the rules. Blood glucose meters and CGMs give us daily feedback, some which is positive and some which is negative. Quarterly or semiannual A1c’s are our report card. Yeah, they’re just numbers, but somehow they burrow their judgements into our souls.

Now just imagine if diabetes treated us like Candy Crush. If you fail to win a game in Candy Crush, you are given the message: “Level failed! You did not reach the goal! Try again.” If that isn’t enough, the next screen rubs salt in your wounds by saying “You failed! You did not finish all the orders. Retry.”

In a Candy Crush diabetes world, our blood glucose meters would provide comments along with our numbers. In response to an elevated number like 281, you’d get a scolding along the lines of “You failed! You are out of range! Try again tomorrow.” These accusatory rantings would of course be accompanied by a little dancing girl with a big frown. A worse scenario might be a crying candy heart which gives you the message that you have “no more lives” and it will be 23 minutes 17 seconds until you get a new life. In this world there is no reward for trying hard and no respite from the repercussions of failure.

Fortunately diabetes is somewhat kinder than Candy Crush. Most of us who participate in the Diabetes Online Community (DOC) work hard to support each other and remind ourselves that we are not defined by the numbers on our diabetes scorecards. We celebrate our victories and retweet congratulatory messages of “Wonderful. Level completed!” If I were to label someone or even myself as a failure, I would quickly become the victim of universal condemnation by my fellow D-peeps.

In many ways my diabetes is a saga that is not that different from Candy Crush. Every win is hard fought and has elements of luck and skill. Failures are rampant with the only recourse being to try again. The game is seemingly endless with each victory just sending me to another challenge with a slightly different scenario. Chocolate is an epidemic roadblock to success in Candy Crush and there is no doubt that chocolate has more than once undermined my attempts to tame the carbohydrate-craving monster that lives within me. Rumor is that there is a conclusion to Candy Crush, but it is not in sight for me. I wonder if that finish line is similar to the ubiquitous promise of a diabetes cure in five years….

I suppose that there is one huge difference between Candy Crush and diabetes. Although it might be difficult to do, I can choose to stop playing Candy Crush and turn my back on striped candies, color bombs, and jelly fish. But with Type 1, there is no deleting the app on my iPad. I can only keep playing the game while accepting my successes and failures and doing my best to keep moving forward. I think I’m on Level 1,856,913 of diabetes. What’s the prize? I’m not quite sure, but I think the prize is getting to play again tomorrow. And the next day. And the day after that.

My Eight Days of Chanukah Wish List

Posted on December 5, 2013 by Sue from Pennsylvania

1. I wish that frying potato latkes wouldn’t mess up my entire kitchen. The oil gets all over everything and grating potatoes is a hard thing to do.

2. I wish that I lived part time in Atlanta so that I could see my two children, my son-in-law and granddaughter more often.

3. I wish that in my retirement years I didn’t have to spend so much time trying to fight Medicare for a CGM for my husband.

4. I wish I could be a kid again for the 8 days of Chanukah so that I would get 8 gifts, one each night.

5. I wish that Laddie, Sue from New York and myself could sit down together and have a cup of coffee.

6. I wish I could eat anything that my heart desired and not gain any weight.

7. I wish that I could tweak my nose and have my house magically get cleaned.

8. Most of all, I wish the decision from our Administrative Law Judge would get here. Waiting for over five months…and still waiting…is way too long.

Twelve Wishes

Posted on December 2, 2013 by Laddie

I wish that foods that don’t need sweetening weren’t always loaded with sugar. Chicken salad used to be a friendly food for me but most restaurants now add various sweeteners to the dressing along with dried cherries or cranberries.
On a related issue, I wish that Whole Foods and Panera Bread didn’t think that filling a food with honey makes it health food.
I wish that my best was better than it is.
I wish that when I was reading a book on my iPad that I didn’t keep switching to Candy Crush or to Pages to work on a blog post.
I wish that I had a large house to live in and a small house to clean.
I wish that I had as much willpower as everyone thinks I do.
I wish that I could be young again with the wisdom and happiness that being older has given me.
I wish that I didn’t constantly miss the “a” on my iPad keyboard and keep typing “disbetes”.
I wish that winters weren’t so cold in Minnesota.
I wish that I enjoyed cooking because then I would have better meals to eat.
I wish that I could be a guy every November and December and have Thanksgiving and Christmas magically appear.
I wish that I could be friends with all of the people whom I’ve met through diabetes without any of us having diabetes.

JDRF Reach and Teach

Posted on November 18, 2013 by Laddie

Saturday I attended the 5th annual Reach & Teach sponsored by the MInnDakotas chapter of the JDRF. The event was a family event with children participating in a KidsKamp while their parents visited vendor booths and attended educational sessions. The JDRF has been working hard to include adults with Type 1 in its mission and the event had plenty to offer T1 adults. Many of the adults who attended are part of the local JDRF Adults with Type 1 support group and it was a day of fun meet-ups and conversations.

Kerri Sparling, the rock star blogger from Six Until Me, was the featured speaker for the event. It’s kind of a “duh” thing to say, but in person she is just like she is online. She sparkles, she is witty, she talks fast, and she draws you into her story to help you learn about your own. To the parents attending the opening session, she was proof and inspiration that their children with Type 1 will grow up to be happy and healthy adults.

The second part of the opening session was a JDRF Research Update presented by Barb White, a parent of a T1 son and a JDRF Board Member. She gave a thorough overview of the types of research that JDRF funds and inspired us with the theme that “JDRF is turning Type One into Type None…with not just a vision, but a plan.”

Later in the morning Kerri led a session addressing diabetes burn-out. She shared many moments of laughs and tears with the audience of adult T1s, parents, and a few adolescent T1s. She did a good job of involving the group and we covered an eclectic bunch of topics from Dr. Bernstein to bad relationships with doctors. To the 17-year old who shared her angst at the difficulty of trying to be perfect for her parents and doctors, you are brave and you are not alone. Your confession brought tears to my eyes and I hope that sharing your burden made it a bit lighter.

The third session that I attended was The Use of New Media Sources for Diabetes Education and Care Delivery which was presented by two doctors from the University of Minnesota Pediatric Endocrinology Department. Dr. Brandon Nathan began his presentation with the fact that if you do a Google search for “Type 1 Diabetes Mellitus”, you will get 71,400,000 (!) matches. After that he did an overview of research validating the benefits of online education and care for patients with diabetes. Dr. Ewa Oberdorfer’s presentation highlighted her research work with T1 teenagers and the use of online contact and videos made by teens for teens to help improve the education and health results for this age group.

The day ended with a kick-off rally for the 2014 Walk to Cure Diabetes along with a box lunch. It was particularly nice to see salads and gluten-free options in addition to the standard sandwich boxes. Kerri joined a bunch of us for lunch and graciously donated her chocolate chip cookie to Doug (@salguodmai) who had broken the ice in the burn-out session by unabashedly proclaiming his love for candy and sweets. If you check out Doug’s blog, you can read his report of the day and see a few more photos.

Me, Kerri, and Katie

Some other blogger attendees were Katie from Diabetic Advocate, Cynthia from Diabetes Light and Finding Peace between the Pokes, and Mari Ruddy whose new blog is still in development. I have admired Mari for a long time from afar and was pleased to have the opportunity to meet her.

Cynthia, Tom (Katie’s fiance), Katie, and me

It was a good day and thanks to the MInnDakotas JDRF for sponsoring such a high quality event. No one wants to have Type 1 Diabetes, but if you do, the Twin Cities is a good place to have it. We have a strong Type 1 community with lots of opportunities to learn from each other, support each other, and make friendships that are stronger than diabetes. We have an informal T1 get-together next Saturday, November 23 and a JDRF Adult with Type 1 meeting on December 16. If you live in the area and would like information on either of these events, please contact me.

November: Diaversary and more

Posted on November 15, 2013 by Laddie

In recognition of November as Diabetes Awareness Month, Sue from Pennsylvania, Sue from New York and I have written blog posts for publication this week. Sue from New York wrote about her appreciation for medical devices that keep her safe. As the spouse of a man with Type 1, Sue from Pennsylvania wrote about the importance of diabetes Awareness in November. Today I am writing about my November activities and my 37th Diaversary.

November is a busy month for the Diabetes Online Community (DOC). November is Diabetes Awareness Month(DAM), American Diabetes Month, or National Diabetes Month depending on whom you’re talking to. Regardless of the name, November is a month dedicated to increasing awareness of and advocacy for diabetes. On top of that, November 14 is World Diabetes Day, a campaign developed by the International Diabetes Federation (IDF) and symbolized by the Blue Circle logo.

I have been impressed by the advocacy efforts of many of my fellow PWD (people with diabetes). Christel at theperfectd has spent the month being a Diabetes Awareness Month guide (a DAM guide about damn diabetes!) and writing daily informational posts about diabetes. Kerri at Six Until Me started the Diabetes Photo-a-Day project with a list of word cues for daily photos showing the life of someone with diabetes. George at Ninjabetic has been writing a daily tribute to special people in his diabetes world. Cherise from DCAF organized a 24-hour Twitter Chat on World Diabetes Day with a different host each hour. Cynthia at Diabetes Light has invited her readers to submit a quote and photo so that her blog can feature daily quotes by people with diabetes. I was honored to be asked by Cynthia to participate in her project and my quote, photo, and definition of success are featured on her blog today.

I started the month with stress and guilt that I wasn’t doing enough for diabetes awareness and feeling left in the dust by my more ambitious fellow bloggers. By the time I realized that I should have considered doing an “everyday” project, I was well into the month and excused myself with the excuse that it was too late for this year. I do have a few ideas for next year.

But then I compared myself to where I was a year ago. I started blogging in late May 2013 and along with my two co-bloggers, Sue from New York and Sue from Pennsylvania (actually three co-bloggers if you count Abby the Black Lab), have published at least two posts every week. For the first time in my life, I wrote letters and sent Tweets to my elected representatives regarding the Strip Safely campaign. For the second year I participated daily in the Big Blue Test. I tweeted in the DCAF 24-hour WDD Twitter Chat. Even though I do not own a glue gun, I participated in the World Diabetes Day Postcard Exchange for the first time.I know that I am not a DOC leader for November activities, but I have been an active participant and I give lots of kudos for everyone’s efforts in promoting diabetes awareness in November.

Abby the Black Lab was a diabetes advocate on World Diabetes Day. She wore a bright blue bow tied to her collar for our trip to the dog park. Interestingly enough, the first two people who asked about her bow had family members with diabetes but did not know about WDD. She educated at least 10 people about the importance of National Diabetes Month and World Diabetes Day.

For better or worse, November has always been a special month in my diabetes life. Today, November 15, is my Diaversary. I was diagnosed with diabetes 37 years ago on November 15, 1976. I didn’t know the exact date until a few years ago when I decided to register with the Joslin Medalist Program. Luckily my local hospital was able to provide me with my medical records which were stored on microfiche. I had many vague memories of my diagnosis and they were backed up by the hospital records.

So Happy Diaversary to me. After 37 years of Type 1, I rejoice to be living a healthy life with no major complications of diabetes. I rejoice that I am part of the DOC which provides me with daily friendship, support, and inspiration. I thank every one of you for the fabulous things that you do to improve the lives of everyone with diabetes. I am proud that my life has intersected with yours, although I wish that none of us had to deal with diabetes. Every day I continue to learn and grow. I hope that I can continue to say that until I have earned my Joslin 50-year medal and maybe my 75-year medal. To everyone in the DOC and to all of my family and friends, I hope that I have been able to give you at least a fraction of what you have given me.

National Diabetes Month and World Diabetes Day

Posted on November 14, 2013 by Sue from Pennsylvania

LADDIE: IN RECOGNITION OF NOVEMBER AS DIABETES AWARENESS MONTH, SUE FROM PENNSYLVANIA, Sue from New York, AND I HAVE WRITTEN BLOG POSTS WHICH WILL BE PUBLISHED THIS WEEK. Yesterday SUE FROM NEW YORK wrote ABOUT HER APPRECIATION FOR MEDICAL DEVICES THAT HELP KEEP HER safe. Today Sue from Pennsylvania writes about her journey learning about diabetes and why increased awareness about diabetes is important.

Fourteen years ago when my husband was diagnosed with Type 1 diabetes, I had no clue exactly what that would mean for us. I was one of those people who thought that diabetes just meant no sugar. Quickly I learned that there is so much more to diabetes than removing sugar from your diet. The food that we loved to eat always included some type of pasta, rice or bread. Since I am the cook in our family (my husband’s culinary talents involve making either scrambled or over easy eggs), I had to become aware of the carbohydrate count of the meals that I was cooking. I can truly say that I found this then, and even today, to be a task that I do out of necessity but with no enjoyment whatsoever. I love to cook and experiment with new recipes but it’s a lot harder to do when you have to be aware of the amount of carbs in every recipe.

An added challenge to my husband’s Type 1 diabetes is the fact that he has hypoglycemia and hyperglycemia unawareness. It seems as if almost all of our friends with diabetes are either Type 2 or Prediabetic and they don’t have a clue as to how difficult it is to be a Type 1 diabetic. They have no understanding of the daily fear and stress experienced by both my husband and me as a result of his hypoglycemia unawareness. None of them have ever seen someone go so low that he becomes unconscious. I had never seen this before either and I can truly say it is terrifying. One of my first blog posts ever was about the frightening experience of my husband’s first severe hypoglycemic episode. The daily care of Type 1 diabetes is incredibly daunting with monitoring blood sugar either by fingerstick or CGM (if you’re lucky enough to be able to get your insurance to pay for it), watching what you eat, and just plain being aware of diabetes all of the time.

The reason why National Diabetes Month and World Diabetes Day are so important to me is that any awareness that we can bring to this illness is a positive thing. Anytime we can tell our stories to educate those who are uneducated (as I was) is a positive thing. I continue to be in awe of those men, women and children who have to deal with this condition on a daily basis because I know how difficult it is. I have become aware and I’m hoping that by calling attention to diabetes during National Diabetes Month and World Diabetes Day, more people will become aware. That would be a good thing.

My Guardian Angel Has Helping Hands

Posted on November 13, 2013 by Sue from New York

Laddie: In recognition of November as Diabetes Awareness Month, Sue from New York, Sue from Pennsylvania, and I have written blog posts which will be published this week. Sue from New York has written about her appreciation for medical devices that help keep her out of harm’s way. This is a companion post to her wonderful post about the families of people with diabetes.

On August 19 I wrote a blog post titled The Saints We Call Our Family. In this blog I praised the family members who vigilantly keep us type 1 diabetics safe. I failed to give recognition to the medical devices that also keep us safe. I figured that there was no better time than Diabetes Awareness Month to give credit to the diabetes hardware that helps keep me healthy year-round.

My Dexcom G4 Platinum continuous glucose monitor is one of my guardian angel’s helping hands. It keeps me safe from rising and plunging blood sugar levels by giving out loud alerts that wake me in the middle of the night. It gives me constant feedback on how food and exercise affect my blood sugar. It is truly a life saver for insulin dependent diabetics.

My guardian angel’s other helping hand is my OmniPod pump. My pump has several useful purposes, one of which is calculating insulin on board so I don’t stack insulin when my blood sugar is high. My pump is also capable of giving me insulin in increments of five hundredths of a unit. That is an amazing thing, considering that insulin given by needle is measured by whole units.

Both of these devices have helped ward off the terrible hypoglycemic episodes that I used to have in the past. Emphasis on PAST. It has been three years since I have had a hypoglycemic episode when I needed external help.

My diabetes has been so much easier to handle since I’ve been blessed with these two miracles.

The Dash

Posted on November 7, 2013 by Sue from Pennsylvania

Recently a friend was recalling a visit to the grave of his father-in-law. As he was looking at the headstone and saw the date of birth and date of death, he focused on the dash (-) between the two dates. It got him thinking about what went on in his father-in-law’s life in the space where that dash was. It also got him thinking about what he had done in his life that will one day be the dash on his headstone. This person happens to be an extremely generous person with his time, his wisdom, his philanthropic endeavors and is truly someone whom I would love to model my life after. He is fortunate to have a wife who shares the same wonderful qualities that define him. They both know that the dash will be full of everything great that they’ve done in their lives.

When I think of my own mortality (and hopefully that won’t be for a long, long time), I think about my dash. I have always been a very private person; not one given to making speeches or calling attention to myself. Over the past months, I have turned into an advocate for my husband’s diabetes management, especially with reference to his Continuous Glucose Monitor (CGM). I have blogged which is something that I had never envisioned myself doing. I have also been trying to aid whomever needs my help in navigating the Medicare Appeals process for CGM coverage and I have even been interviewed by Diabetes Forecast Magazine about our Appeal process in trying to get my husband a CGM. This interview will be a sidebar to an article being published about Medicare in the December issue of the magazine. Everything that I have been doing is in contrast to the way I lived my life before. I decided that someone needed to do something about the CGM guideline and so be it if that someone needs to be me.

Recently I was with these two friends at a joyous but sad going away party. They are moving from our close community in Harrisburg, PA to Northern New Jersey to be closer to their family. His parting words to everyone at the party were “Don’t forget the Dash”. Those words will now stick with me daily and I will continue to try to fill in my dash and fight as hard as I can to get the Medicare guidelines on CGMs changed.