Making Memories

Sue B_Head SquareMy husband Marc is a Type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Before going on Medicare in June of 2012, he had been using a Continuous Glucose Monitor (CGM) with full coverage by private insurance. As most of you know, Medicare does not cover the CGM. We spent almost two years going through the Medicare Appeals process and lost at every level. As we were deciding whether or not to go further (Federal Court), a night in shining amour came through for Marc in the form of the Veterans Administration. He had applied for VA benefits two years ago and that’s how long it took to get his application processed. Once it was processed, things moved quickly and in less then a month after his initial meeting with an endocrinologist, Marc was notified that a CGM and sensors were on their way. Since that day, the VA has sent all the supplies free of charge and for that we are very grateful. I use the word “we” throughout the blogs that I’ve done on our two year journey to get the CGM because I became Marc’s advocate and did all the blogging, letters to everyone I thought could help us, and made many connections with other people with diabetes. Although I do not have diabetes, I immersed myself into the cause to get Medicare to change their guideline for the CGM and will continue to do so.

The intention of this blog is not to be about diabetes. It’s about making memories. On Friday, December 19, Marc and I will leave for Florida. On Saturday, the 20th, our children and grandchild will meet us in Florida and on the 21st, we are going to board the Carnival Conquest for a 7-day cruise. This is in celebration of Marc’s and my Making Memories45th wedding anniversary. Marc and I did the same thing for our 40th anniversary and the memories we made during that cruise were invaluable. My daughter Robin, her husband Greg and our granddaughter Bailey live in Atlanta, as does our son Jason.  Marc and I live in Pennsylvania. There are over 800 miles between us and we don’t get to see our Atlanta family as often as we would like. When we did our 40th anniversary cruise, Bailey was only 5 and it was priceless seeing her delight during the entire cruise. She, as well as all of us except Greg, did a zip line. Together with her parents she went on a riverboat ride, and we all enjoyed the beaches in all the ports we went to and life aboard the ship. Bailey had ice cream for breakfast, lunch and dinner which is something that would never be allowed at home. Marc and Jason snorkeled and Jason jet skied. We all had new and adventurous experiences and had a great time being together. Now that Bailey is 10 and we are so looking forward to her new experiences and ours as well.

In the past few years, we have lost many friends to various diseases. One passed away from ALS and another died after a major heart attack. A few friends died from various types of cancer or have cancer presently and are going through treatment. My brother has had health issues and recently had two surgeries. And of course, for us, living with diabetes is always a presence in our lives. It’s a blessing when we have the opportunity to do things with our family and create memories that we can always pull out when times get rough.

At the age that Marc and I are at now, we want to make memories with our children and granddaughter that we can all cherish for many years to come. We know they also feel the same way. This is what is really important in life. The love you have for your family. The love they feel for you and all the happy moments that can be captured. It’s what makes life worth living.

Eight Days of Hanukkah

Sue B_Head SquareSince I celebrate Hanukkah, I decided to take each day of our eight day celebration and write what I am most grateful for.

On the 1st day of Hanukkah, I am very, very grateful for my husband Marc.  He is my rock and has been for over 45 years.

On the 2nd day of Hanukkah, I am grateful for my children: my son Jason, my daughter Robin and her husband Greg and my granddaughter Bailey.  They are the loves of my life.

On the 3rd day of Hanukkah, I am grateful for my friends.  Most of them have been in my life for over 35 years and since most of us live away from our immediate families, we have become family to each other.

On the 4th day of Hanukkah, I am grateful for my love of doing things with my hands.  I Menorah2014love crafting especially knitting and beadwork.  I especially love knitting afghans for our friends’ children who are getting married and for the babies when they come.

On the 5th day of Hanukkah, I am grateful for my love of reading.  I have traveled to different places and learned so much because I love to read everything and anything and have always, since early childhood loved the written word.

On the 6th day of Hanukkah, I am very grateful that we have a wonderful Hanukkah gift of a cruise for our entire family.  Since we haven’t seen sun here for the past five days (Harrisburg, PA), it will be wonderful to be in the sunshine and warmth of the Caribbean.

On the 7th day of Hanukkah, I am extremely grateful to the Veterans Administration for supplying a Continuous Glucose Monitor  (CGM) to my Type 1 diabetic husband Marc.  After a 2 year fight with Medicare that was frustrating and going nowhere, the VA is supplying the monitor and sensors free of charge.

On the 8th day of Hanukkah, I am very grateful to myself for having the tenacity to decide to fight for the CGM.  I learned so much about myself during this journey.  I never knew I had it in me to blog, to do a Podcast, to speak to so many people across the United States who were in the same predicament as Marc and make so many new friends.

So to everyone who reads my blogs, I wish you all a Merry Christmas (or Hanukkah) and a very Happy and Healthy New Year.

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 Call Not Made

Sue B_Head SquareI had a cousin whom I never really got the opportunity to know well.  My father and my cousin’s mother were brother and sister.  Growing up, our family lived in Philadelphia and my cousin’s family lived in Washington, D.C.  When they settled there I saw him occasionally but because he was older by 5 years, we didn’t have much in common.  The years passed and we saw each other less and less and then not at all.

When my husband was diagnosed with diabetes in 1996, I thought about calling him.  I knew that he had extensive knowledge of diabetes.   But as happens all too often, I kept putting it off thinking that I would eventually make that call.  Days passed, weeks passed, months passed and then years passed.  I never did make that call. Then came a day in March when I received an e-mail from another one of my cousins that he had died.

The other day I was speaking to Laddie, my new friend who graciously offered me the chance to write on this blog, and we were discussing people who are well known in the diabetes field.  I happened to mention my cousin’s name and not only did she know of him, but she sent me a link to a Keynote speech presented at the Friends for Life Conference that took place in July.  The address was given by Meri Schuhmacher and was posted on her blog, Our Diabetic Life.  I read that speech with tears in my eyes and a deep sadness that I never did pick up that phone to call this wonderful man.   I forwarded that speech to my cousin’s sister who has been a diabetic since early childhood.  She sent me a link to another blog post written by Tom Karlya.  From that post, I gained more insight into a man who was a psychologist, a professor of medicine and pediatrics, had written many publications, traveled to conferences all over the world, and was on many boards with his life’s focus being on improving the emotional care of people with diabetes.  He was also a gentle man who loved his family and nature and lived each day to the fullest.  Since I read these two blog posts, I have learned from other publications how well respected my cousin was in the diabetes community.

Richard RubinMy cousin’s name was Dr. Richard Rubin.  I never got to know him in life but through the writings of others, I am now getting to know him.  Every day since his death, I not only mourn him, but my loss in not picking up that phone.  If anything is to be learned from my experience, it’s that age old expression “never put off till tomorrow what you can do today”.   I lost the opportunity to get to know my cousin and find out for myself how wonderful he was and why he was so loved by his family and by those whose lives he touched.  His life was a life well lived and I wish I could have been a part of it.

The photo of Dr. Rubin is from a tribute to him published in the July, 2013 issue of Diabetes Care.

The Saints We Call Our Family

Sue May 2013_Head SquareThis blog is dedicated to all the saints who are our husbands, wives, children, parents, siblings, and any other family members who live with us diabetics and look out for our well-being day in and day out.

Sue from Pennsylvania is a contributing blogger here.  She has shared the work involved with trying to get her husband approved for a Dexcom CGM which he had been on for years until Medicare denied payment. She and her husband had a  telephone hearing with an administrative law judge while in their endo’s office. They are anxiously awaiting the judge’s decision. She lives in daily fear that her husband, who suffers from hypoglycemia unawareness, will have an accident or otherwise get hurt. Sue has been contacting her senators, representatives, other Type 1 diabetics, Diabetes Forecast editors, as well as federal judges. She is even planning on sending a letter to President Obama.   This advocacy has turned into a full time job for Sue; she is truly her husband’s earthly saint.

I am also an online friend of Mary who has both an adult son and daughter with Type 1 diabetes. Her son lives on his own, while her daughter who is mentally challenged requires almost constant supervision to control her diabetes.  Mary has been a longtime member of the DOC, and has gained and shared much wisdom in the fine art of managing the day-to-day details of her daughter’s diabetes.  Mary has been working on having her daughter live in an assisted living arrangement in her own home which she will share with two other mentally challenged women.  Mary’s children are truly blessed to have her as their mother.Inspiration_Clouds

My husband has had to live with the stress of keeping both my son and me safe.  My son has lived with Type 1 diabetes for 39 years, and I for 25 years. My husband has had to bring both of us out of comas when we went hypo during the night, as well as give us glucose during the day.

Last night while our son was visiting, he decided to return home.  When he went to get his stuff, I noticed that his blood glucose meter was on the table and I told him not to forget it. He just stood there, so I told him to check his blood sugar. He got a reading of 38 mg/dl. My husband immediately got him a can of soda to drink.

After he drank the soda my son took off and got in his truck. He got his keys out and tried to start the truck. My husband pried the keys out of his hand. My son got another key and tried to put it in the ignition. At that point my husband ordered him to sit in the passenger seat and then drove him home. I followed in our car. My husband and I were still shaking on the ride back home.

My son uses a Medtronic pump and CGM. His CGM read 128 while his meter read 38 and it never gave him a warning that his blood sugar was dropping. It is my hope that I can convince him to begin using a Dexcom CGM which I feel is more reliable.  My husband has been my and our son’s guardian angel all these years.

Who are the saints you call your family?