Ghouls, Goblins, and Gum

Halloween Gum2Laddie_Head SquareAlthough I’ve never been fond of dressing up in costumes, I am a big fan of Halloween.  With the children grown and out of the house, I don’t buy pumpkins anymore or do much decorating.  But I love  the chill in the air, the blowing leaves, and the constant ringing of the doorbell with ghosts, skeletons, princesses, and action heroes awaiting hand-outs of whatever bounty Target or Costco has enticed me to buy.

But wait!  I have diabetes.  This year is my 37th Halloween with Type 1 and believe me, I have consumed more than my fair share of Snickers, Peanut M&M’s, Almond Joys, and Kit Kats.  More than once between trips to the front door, I’ve munched on a candy treat with the plan of having just one.  Not once  have I ever stopped at one.  As I have mentioned in numerous blog posts, I don’t do moderation well when it comes to chocolate.  But I am still naive enough to give it a try every year.

Minnesota women are famous for the vast quantities of food we provide at potluck suppers.  Fear of running out of hot dish, jello salad, or snicker doodles is handed down from generation to generation.  It is therefore genetically impossible for me to risk running short on Halloween candy.  I have no choice but to toss one or two extra bags of Hershey bars into the cart and thus ensure that the glut of candy extends well into November.

In recent years I have worked hard to reduce the amount of junk food I eat.  I have no doubt that carb restriction is one of the most powerful tools I have for reducing the range of my blood glucose excursions.  I am miles away from eating a perfect diet but I continue to strive to do better every day.  At the same time I strongly believe that the health of our nation and our children is negatively impacted by the glut of fast-acting carbs.  Not only is crap food not good for people with diabetes; it is not good for anyone.  Oh sure, Halloween is just one day so let’s forget good nutrition and just have a treat.  The problem with treats is that they are everyday occurrences in our world and they long ago stopped being an isolated indulgence.

So you probably think that I am on my way to being a Bah Humbug Scrooge of Halloween.  A despicable know-it-all neighbor screaming obscenities at pets and children.  A grouchy old lady wearing curlers and a faded housecoat in a suburban cul de sac.  The Witch of Minneapolis.

And you are wrong!

Halloween-Gum_SquareLast year I decided to quit handing out candy and buy sugarless gum and stickers instead.  I went to Costco and spent about three times my normal Halloween budget on packs of sugarless gum.  Not small packs, but full packs with 14-18 pieces of gum.  I also bought sheets of stickers to attach to bags of Goldfish crackers for the youngest goblins.  It was a huge success and almost every trick-or-treater was thrilled to receive “a whole pack of gum!”  The little ones were equally pleased with stickers.

It was a small victory for my psyche and I am proud to have made a statement and walked the walk of my convictions.  After last year’s victory, I decided to repeat the sugarless gum handout this year and hope that this will continue to be my Halloween tradition.  One thing that I will not do this year is indulge in leftover goodies.  I had not chewed gum in recent years before enjoying some of the extra gum last year.  It seemed like a fine idea until I pulled out a filling and broke a tooth.  A new crown and a thousand dollars later, I decided that Halloween should end when the doorbell stops ringing.  All excess treats, whether gum or chocolate, should either self-destruct or be thrown to the birds.

Dear Judge Smith

Sue B_Head SquareDear Judge Smith:

It has been over four months since June 26, 2013 when my husband had his Administrative Law Judge hearing with you in order to appeal Freedom Blue’s denial of coverage for his Continuous Glucose Monitor (CGM).   My husband, his endocrinologist and I all testified regarding the necessity of him having a CGM to prevent a catastrophic episode of hypoglycemia that could cause him to lose his life because of extremely low blood sugar.  We presented you with numerous charts and exhibits so that you would understand how quickly his blood sugar can plunge from normal to low with the result that he can’t make the necessary corrections by himself.  In some cases, he has had to be revived by the EMS.

To date, we have heard nothing from your office.  We are anxiously awaiting the determination and thought that it would come in a timely manner due to the seriousness of the situation.  We were originally told that we would get the decision in four to Mailboxsix weeks.  After four months we are now well past that period of time.  I called your legal assistant and was told that we could not get any information until the decision was mailed.  All he could tell me was that it was “in queue.”  What does that mean?  Do we have to wait weeks, months or even longer to find out whether we got a favorable or an unfavorable decision?  In the meantime, each and every day of my husband’s life, I worry.  From the time he leaves the house for work until the moment he gets home at the end of the day, my mind is constantly wondering and praying that he’ll come home to me safely.  Our frustration is at an all time high.

There is something so wrong with the entire system.  There are many men and women in the same position as my husband who desperately need the CGM and sensors and can’t afford them.  There are many men and women who have gone through or are now going through the Medicare Appeal process who will have to wait for many months in order to get their decisions.  Does someone have to die before any of this changes?   I sincerely hope not.  In the meantime, we wait and wait and wait each day for the mail in hope that the decision will finally be here.

Very truly yours,

Sue from Pennsylvania

To The Girl

Laddie_Head SquareI went to college in the early 1970’s.  In many of the dorms the communal bathrooms were in the basement and were reflective of the the university’s history as an all-men’s school.  It was typical to walk down two, three, or four flights of stairs to take a shower or use the toilet.  The following letter tells the story of a guilt-laden memory from those years.


To the Girl


2013 ADA Expo in Minneapolis

Minne-Expo_2Laddie_Head SquareSaturday was the American Diabetes Association Expo in Minneapolis. It was the first time that I have ever attended this event because I had always thought that there would be little for me there. Although I enjoyed my 3-1/2 hours there, I think that was the case.

I was warned that the event was heavily oriented towards Type 2’s and that was partially true.  There were many booths like Medifast, SlimGenics, and Extend Nutrition whose target audience is definitely Type 2.  Similarly it was easy to stereotype the Active Living and the Healthy Eating areas as having a Type 2 emphasis, but really the intent was to get everyone, diabetic or not, exercising and eating healthy foods.  Type 1’s were definitely not ignored because the major pump and CGM manufacturers had a strong presence.  I particularly enjoyed the opportunity to see Medtronic’s new Enlite sensor and the smaller Omnipod.  Because I continue to second-guess my decision to go with the Animas Ping a year ago, I could hardly bear to look at Tandem pumps….

I think that a lot of my disconnect was that in recent years I have learned a huge amount about Type 1 from personal experience, reading, and involvement in the DOC.  Therefore almost everything at the Expo was too basic and generic to appeal to me.  Of course it would be unrealistic to expect anything different because those of us in the DOC who are highly involved in our care are a small percentage of people with diabetes.  I had hoped that the talk by a well-known local endocrinologist about getting off the high and low rollercoaster might be interesting.  He was an engaging speaker, but unfortunately 30-45 minutes is not enough time to move beyond superficial ideas especially when you are addressing an audience of Type 1’s and Type 2’s.

There was a large screening area where free cholesterol and A1c tests were available. You could get risk assessments and screening for strokes, PAD, high BP, dental problems, and sleep apnea. I had a brief eye exam that included photographs of my retinas.  Because I had never seen a podiatrist in my 37 years of diabetes, I had a foot exam that confirmed that everything was okay.  I didn’t participate in many of the screenings because my annual physical was just a few weeks ago.  If it had been several months since my last A1c, I definitely would have taken advantage of that test.


As is common at events like this, I came home with a bunch of free stuff.  Two tote bags were appropriately royal blue and ready for #BlueFriday.  Several toothbrushes, dental floss, glucose Quick Sticks, and a pedometer were part of the loot.  I’ll definitely use the sizable tube of foot cream and the USB hub that I picked up.  Other than that, I was very good at refusing things that I had no use for.  Somehow I ended up with too many handouts and magazines that ended up in the recycling bin.

Chances are that I will never go to this event again.  But if you’ve never gone to an ADA Expo, I’d say that you should go and see what you think.  If you’re considering a pump or CGM, it’s a great place to see different devices and make contact with the local reps.  If nothing else, it’s an opportunity to see that there are a lot of people in the world with diabetes along with many healthcare providers trying to help us and a ton of companies trying to sell us stuff.


Laddie_Head SquareThe Diabetes Community is a treasure chest full of stories:  your story, my story, your child’s story, your friend’s story, your neighbor’s story, a stranger’s story.  Many of the stories are inspirational.  Some of the stories make you laugh.  Others make you cry.  Some are reminiscent of Pollyanna with cheer and helpfulness in every sentence.  Others visit the dark places in your soul where you rarely dare to venture.  Some frustrate you because the author appears to have a backpack of helium balloons and yours is filled with rocks.  Others guiltily make you feel giddy because the writer is seemingly screwing up his diabetes much worse than you are.  Each of these Treasure Cheststories reminds you that although you sometimes feel alone in your diabetes journey, you are not.  You are part of a community: a family with a secret pinky handshake or at least a pump in the pocket or a meter in the purse or a Calorie King book in the car.

Some stories are told in words.  Others are shared in photos or drawings or comics.  You can find some on YouTube and others you can download from iTunes.  Many tales are typed on iPads and desktop computers while others are written with tears smeared across giant cupcakes in the boo hoo zone.  Some stories are elegantly written blogs while others are a brief cry for help on Twitter or an explosion of anger on a message board.

Lately I have been reading a lot of stories.

I just finished reading My Sweet Life – Successful Women with Diabetes and My Sweet Life – Successful Men with Diabetes.  Each book contains approximately twenty-five life stories written by “successful” people with diabetes.  These books are the work of Dr. Bev Adler, a psychologist and CDE who specializes in helping people cope with the emotional challenges of living with diabetes.  She was diagnosed with Type 1 in 1975 and she brings her experience with diabetes to everything she does. Her story is the first chapter in the women’s book.  Although I was familiar with her books, I first “met” Dr. Bev on Twitter @AskDrBev.

One view of success is that it is measured by the “important” things you do with your life and many of these storytellers fit that mold. Charlie Kimball is a well-known driver in the IZOD IndyCar Series.  Kelli Kuehne played golf on the LPGA Tour for thirteen years and Zippora Karz was a soloist with the New York City Ballet.  Dr. Jason Baker is an Assistant Professor of Medicine and Attending Endocrinologist at Weill Cornell Medical College in NYC and the founder of Marjorie’s Fund, a global initiative dedicated to the education, care, and research of Type 1 Diabetes in the developing world.

But being well-known is only one way of thinking about success.  Success in living with diabetes might be thought of as taking the hand you’re dealt and using it to empower DrBev Books4you rather than limit you.  The storytellers in both of these books write of hard times with diabetes, both physically and emotionally, and not one of them claims to be “perfect” at living with it.  But they have all come to terms with diabetes, and many have made diabetes their life work.  There are doctors, nurses, CDE’s, psychologists, and authors.  Many of the writers are well-known figures in the Diabetes Online Community and you’ll see stories by Kerri Sparling, Scott Johnson, Kelly Kunik, Amy Tenderich, Gary Scheiner, and too many others to list.  Others have taken diabetes along for the ride in various professions, life adventures, and parenthood.  I was familiar with many of the authors and others were completely new to me.  It was a reminder that not everyone with diabetes hangs out on Twitter or writes a blog….

Stories from the DOC are not new to me.  I am a faithful listener of DSMA Live and I regularly read about 50 blogs.  I am less active on message boards than I used to be, but I keep up with several friends whom I’ve met through TuDiabetes, Insulin-Pumpers, and the ADA Type 1 board.  I dabble in Twitter and Facebook and make new connections almost daily.  I have been lucky to meet many of my online friends in person and these relationships are incredibly rewarding.

I really do hate diabetes.  But I cherish all of the stories and relationships whose threads have been woven into my life because of diabetes.  Maybe we could write a new story:


Thanks to Dr. Bev Adler for providing me with complimentary copies of her books.  I enjoyed them tremendously.  If you would like to read her books, they are available at  A portion of the proceeds from the purchase of the books is donated to the American Diabetes Association.


Hey, He Needs his Insulin!

Sue B_Head SquareWho would ever think that it can be difficult to get insulin for someone on Medicare?

For the past 15 months my husband Marc has been on Medicare. During most of that time we have been fighting for Medicare coverage of a CGM because he has hypoglycemia and hyperglycemia unawareness. We thought that the CGM would be the biggest obstacle that we would encounter in dealing with diabetes under Medicare. It turns out that while a CGM is an extremely important device for Marc, insulin has turned out to be an even bigger obstacle.

Under Medicare Marc previously got his insulin with no problems because it was being billed under Part D. As a result of the deductible on his supplemental insurance policy, he had a substantial co-pay for the insulin. Recently he found out that his insulin should be billed under Part B of Medicare because he uses an insulin pump. Insulin under Part B provides significant savings because there are no co-pays and the cost is excluded from the donut hole gap in coverage. The Part D billing was partially our mistake because we didn’t understand Part D, Part B or any other parts for that matter.

Now we come to these past few weeks when once again Marc needed insulin. We were told that CVS Pharmacy has a contract with Medicare for insulin.  Marc took his prescription over to CVS which is only 3 minutes from our home. The pharmacist told him that she would run it through to see what the charge would be under Part B. After three days, Marc received a call from CVS saying that his co-pay would be $1900 for a three month supply. We could get no answer as to why the charge was so much.  Can you imagine how quickly Marc sent me to the pharmacy to pick up the script?

Because he’s a working stiff and I’m a stay at home person (I can’t say mom because the kids are grown and out of the house), I was assigned the task of trying to get insulin. I first called CVS’s customer service line. The wait to speak to a customer service representative was approximately 30 minutes. When I got through and explained what the situation was in trying to get the prescription covered by them under Part B, she put me on hold for another 30 minutes while she tried to contact the CVS Running into brick walls_2pharmacy that we use. She was told that they couldn’t tell her anything because they didn’t have the insulin script in their possession and there was nothing in their computer system. So much for the waste of 1 hour. I did straighten up the house during the long wait so at least some good came out of the call. Thanks to the person who invented the cordless speaker phone.

My next call was to Medicare. Again, I had to hold on for about 10 minutes until someone came on the line. My question to Myra (we got to be good friends during this conversation) was whether a diabetic on an insulin pump would be covered 100% for insulin under Medicare Part B. She asked me to hold while she did her research and when she came back on the line, she told me “most definitely” the insulin would be covered and the cost would not go towards the donut hole. Glory be. Finally concrete information that confirmed what I had been previously told. Maybe Marc would finally be able to get his insulin.

I asked her if she could give me the name of Medicare Providers who dealt with Part B insulin and once more I was asked to hold. When Myra came back on the line, she said there were at least 20 providers for insulin and she proceeded to give me a list of the names and phone numbers. I thanked her profusely and after an hour on the phone with her, I hung up thinking that finally, finally we had hit pay dirt.

I called each and every one of the so-called providers of insulin on the Medicare list and not a single one of them provides insulin. One pharmacist told me that they don’t handle insulin for Medicare because Medicare doesn’t reimburse them enough money to make it worthwhile. Now, I ask, what is wrong with this picture?  How can Medicare not know who supplies insulin? More importantly, how can the reimbursement be so low that pharmacies won’t supply it for Medicare recipients? I was at my wits end after all these calls. Marc needed insulin and I didn’t know what to do next to get it.

Suddenly, a light bulb went off in my head and I decided to call Walgreens.  Somewhere I had heard that they supply insulin to Medicare recipients under Part B.  Mind you, I have no Walgreens in my area and the closest one is 45 minutes away. But at this point, I probably would have traveled two hours to get the insulin. The call was answered immediately by a pharmacist who confirmed that Walgreen’s is a Medicare Provider for insulin. I felt like jumping for joy. I was told what was needed to get an approval from Medicare:  things like my husband’s height and weight, (thought this was strange), pump manufacturer, serial number, date it was purchased and whether it was a private purchase or an insurance company purchase. We faxed the information Running in circles_2immediately and were told by the pharmacist that she didn’t see any problem in getting Medicare to approve the insulin, and we should be able to pick it up on Sunday. Three days later I received a call from the pharmacist informing me that they could not supply the insulin. She said that when he signed up for Medicare, my husband waived his right to certain things. She couldn’t explain what those things were.

Now we were back to square one. Once again I called Medicare. When I mentioned what Walgreen’s had told us about waiving rights, Fred (I was establishing quite a lot of first name relationships with Medicare reps) said there was no such thing.  You don’t waive any rights when you sign up for Medicare. He said I should call Freedom Blue, Marc’s supplemental insurance company. I’m thinking “here we go again.” This whole thing was becoming like the movie “Groundhog Day”.

Nevertheless, I called the insurance company and was told that the only approved supplier under our contract was Liberty Medical. I don’t understand why I wasn’t told this a week ago. Liberty Medical was one of the suppliers that we had originally called when we started this whole process and they gave us a quote of $1100 for the co-pay. Now I was placing another call to Liberty Medical and after holding for 20 minutes, the customer service rep looked up my husband’s records and said that they could foresee no problems with supplying the insulin. So with fingers crossed, I ordered the insulin and hoped that this time we would get it.

One day later, UPS knocked on our door with a boxful of insulin. I felt like I had won a huge battle but was continuing to holding my breath hoping that we wouldn’t get a bill for a co-pay. Last week we got notification that Freedom Blue has accepted the amount that Medicare paid for the insulin. What a thrill that after a harrowing week of spending more then 11 hours on the telephone (most of it on hold), the insulin is finally in our fridge and we don’t have to worry about a large co-pay.

Success_3As a non-diabetic spouse of someone with Type 1, I give thanks to those in the diabetes online community who have guided me in my daily journey to learn more about diabetes. Because of you I now know that insulin for an insulin pump is considered durable medical equipment under Medicare and is covered under Part B.  There is no co-pay and it doesn’t go towards the donut hole…which thankfully will be eliminated in 2014. I hope that this information will be helpful to anyone reading this blog who might not understand Part B.

My whole reason for writing this blog post is to say once again that “diabetes is a challenge in and of itself.  There shouldn’t be these issues that make a diabetic jump through hoops to get what he or she needs.”  I seem to use this quote in almost everything I write and everything I say.  Let’s face it…a person can live without many things. One of those things is not insulin.

There is something horribly wrong with the system.

Snippets of My Childhood

noddayToday is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives.  Sue from New York, Sue from Pennsylvania, and I have each written posts with memories and photos of our childhoods.  Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.


Laddie_Head SquareI was born in Greenville, South Carolina.  I was the youngest of three children and my mother always said that I raised myself.  Some of that was the result of benign neglect, but mostly it was personality-driven.  I always wanted to do things myself and didn’t want anyone helping me or watching over me.  For better or worse, I don’t think that I’ve changed very much.

NoDDay_Laddie1I grew up in the South where women and little girls wore hats and gloves to church.  My father wore a hat to and from work every day along with his suit and tie.  Little girls wore dresses to school and on cold days added a pair of slacks to keep legs warm.  I went to an Episcopal day school and remember bobby-pinning a lacy chapel cap to my head every day for worship services.  Boys seem to escape most of the hat requirements, but the plaid and striped jackets that my brother wore in many photos seem a worse punishment than hats.

With one set of grandparents in Washington State and another in a suburb of New York City, we were not strangers to NoDDay_Laddie2airports and train stations.  I don’t remember the small plaid suitcases, but I do remember the brown tie shoes.  The brown tie shoes that turned into black and white saddle shoes as I got older.  The saddle shoes that I was mortified to wear because the popular girls at school were wearing Bass Weejuns penny loafers and later on loafers with tassels.  I think that I got a few years of loafers before going to girl’s boarding school in 9th grade and returning to uniforms and brown tie shoes.


*We spent a couple of weeks every summer at Pawley’s Island, SC.  I have wonderful memories of hot days in the sun and NoDDay_Laddie3homemade biscuits, fried shrimp, and hush puppies.  I can still smell the Coppertone oil that my sister and I used to enhance her tan and unfortunately my sunburn.  My brother got daily entertainment by pretending he was a shark and attacking me in the ocean.  As much as I love the ocean, I still wonder what creatures are lurking in the shadows.

Lots of memories from long ago.

Special Memories of My Mother

noddayToday is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives.  Laddie, Sue from New York, and I have each written posts with memories and photos of our childhoods.  Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.


Sue B_Head SquareI had a wonderful and loving childhood despite the fact that my parents divorced when my brother was 6 and I was 6 months old.  My father joined the Merchant Marines after the divorce and although he was out at sea for long stretches of time, my Mother made sure that we had a good relationship with him.

NoDDay_SueB1During summer vacations while my brother was at overnight camp, my Mother and I would spend a few weeks in the Catskill Mountains where our family from all around Pennsylvania and New Jersey would congregate for memorable weeks of togetherness.  I loved those vacations.  This was when I got to spend special time with my Mother and our extended family.  Throughout my life, family was very important to my Mother and she instilled those same values in my brother and me.


NoDDay_SueB2In the Catskills, all the youngsters would go to camp during the day, and at night everyone would get dressed up in their finest clothing for dinner and great shows after dinner.   I loved the mountains and especially loved dressing up but more then anything, I loved being with my Mother.  During the rest of the year, my Mother was a working mom who owned her own business and although she was devoted to my brother and me, she was at work during the day.  So to have this time with her was very special.

As a footnote to my little story, when I was 14 my parents remarried each other and were together for the next 18 years until my father passed away.  My mother passed away at the age of 93 having spent 73 years in her own business as a Jeweler on Philadelphia Jeweler’s Row.

A Childhood Spent Outdoors

noddayToday is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives.  Laddie, Sue from Pennsylvania, and I have each written posts with memories and photos of our childhoods.  Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.


Sue May 2013_Head SquareI grew up in the 50’s and 60’s in Scarborough, a seaside town in Maine.  My dad loved the mountains, and we spent our summers camping and mountain climbing and our winters downhill skiing.  My mother loved the water, so my parents would often compromise and we would camp at the lake.  When we weren’t camping, we spent lazy days at the beach.NoDDay_SueS1

My brother Bill has a funny story of the time Dad took him and my other two brothers, Dave and Rick, skiing on Mt Washington:

“When I was in my early teens, my father decided that it would be interesting to climb Mt. Washington in the winter. We couldn’t afford to buy crampons, so he made four pair, for me, him, and my two younger brothers, Dave and Rick. We went up the carriage road from Pinkham Notch to Lion’s Head. Going up Lion’s Head was very steep, and the snow was deep. We were exhausted when we got to the top. Above Lions Head, the snow had blown away, which was good, but the cone up to the summit was pure ice. At one point close to the top, I looked down and realized that if one of us slipped, we would careen down the ice until we hit the rocks at the bottom. It was bitterly cold, and there was no one else on the mountain that we could see. I wondered if this was a good idea. Of course, now that I have passed my father’s age at that time, I realize he was mad!

We got to the top, but it was late in the day. My father said: “Now for the easy part, we just ski down the auto road”. However, the auto road was also pure ice, and we only had wooden skis! At one point, my father’s skis gave way and he slid down the slope out of sight. I said “Dad?” Luckily, he responded. I asked him if I should come down to get him. He said “No, one idiot down here is enough”. He took off his skis, put on his crampons, and climbed back up.

We got below the tree line at dusk. Now we had nice snow, and no ice. The auto road was wide enough that we could kind of see the boundaries in the dark. NoDDay_SueS2However, the car was not at the bottom of the auto road, it was at Pinkham Notch. Dad decided that he and Dave would ski down a hiking trail to Pinkham Notch. Dad told me to go with Rick down the auto road, and they would pick us up in the car. I asked him if that was a good idea, and he said he and Dave would be fine. Rick and I got to the bottom of the auto road, and waited, and waited, and waited. It was very cold. Finally, the car pulled up. I asked what took them so long. They said they couldn’t see the trail in the dark, and kept skiing into trees!”

That was one time I was thankful that Dad left me home in our warm house with Mom!