In order to survive with diabetes, we've all gotta have some serious coping skills and a sense of humor, no?
That's what Joanne Laufer Milo in California says she's learned, in training herself to be a "Savvy Diabetic" -- dealing deftly with everything from hospitalizations, emergency room visits, worldwide travel, to just plain 'ol daily ongoing blood sugar checks, insulin doses and carb counts.
Nearing her half-century mark of living with type 1, the native New Yorker just published her first book called The Savvy Diabetic: A Survival Guide. It's a 234-page volume that shares Joanne's story of life with diabetes, peppered with how-to tips on everything from dealing with diagnosis to venting and coping with emergency situations.
With an education in marketing and business management, Joanne has a pretty diverse professional background: everything from working as a legislative analyst during the big railroad deregulation years in the 80s, consulting and research on artificial intelligence technology for the National Security Agency (NSA) and companies like Texas Instruments, to being a yoga and fitness instructor at two health businesses. She has even started her own online boutique store for dog-related art and gifts.
Not to mention some writing, which includes a circa-1977 article in Seventeen Magazine called "Why Me?" about her teen years with diabetes (reprinted into a college textbook about disabilities), and a tech trade magazine article many years ago. And now, her first book.
Actually, Joanne is a friend of my mom (also a longtime type 1) and she reached out to me after reading about my mom's scary ER experiences this past summer. Joanne shared some of her own hospitalization experiences that led to her impetus to write the survival guide. From the book pitch:
"Joanne had successfully and deliberately avoided hospitals... until she was confronted with her worst fears: an emergency appendectomy 3,000 miles away from home. She was terrified of losing the control of her diabetes which she had worked so hard to maintain. And she was woefully unprepared. Wow, did she learn! Five years later and several more hospitalizations and doctors' appointments, as well as many experiences with travel and just life, Joanne shares the lessons she learned, hoping her insights and experiences will help diabetics and their families and friends too."
Full disclosure: I haven't had a chance to get all the way through the published book myself yet, but got a peek at an early review copy, and got a good sense of her story.
We asked Joanne to share some of that story of her 48 years with diabetes with our 'Mine readers today:
DM) What do you remember from the beginning, when you were diagnosed?
JM) My life before diabetes... I really don't remember lots. Pretty typical life: mom and dad, older sister and a cat, living in the suburbs of New York City. Things started to change just before my 11th birthday. We were vacationing in Puerto Rico at Christmas. I wasn't feeling well, drinking 5-10 (regular) cokes a day, stomach aches and losing weight. I was whisked off to the hospital in San Juan on a stormy afternoon, but the conditions were difficult, toilets dirty... and I just couldn't give a urine sample and wouldn't let them take blood. So it was all attributed to a bug and I was released. At home after the holidays, I started back to ballet classes, drinking gallons of orange juice after class. Still, nobody noticed. Not until a "dark and stormy night" in the diabetes dark ages, circa 1965.
I had just turned 11 and felt so sick I could not make it to school, on a cold Monday in January. My pediatrician sat with my mom and me in his dark office, after hours, to teach us about my diagnosis — I had type 1 diabetes (at the time, it wasn't a "type" but was just called diabetes mellitus). I didn't understand the words and thought I had some sort of disease with polka dots. Of course, I was very scared and we went home to start a life full of insulin injections and peeing on TesTape (the precursor to handheld glucose monitors). That was the beginning of the next 48 years of living with (read also: battling, wrangling, struggling, coping, and simply surviving with) type 1 diabetes.
You've seen incredible changes in treatment through the years -- any "ancient diabetes management" stories that stand out?
I was immediately started on insulin injections, given by my dad, an engineer but a wannabe surgeon. He was truly outstanding at giving painless shots. But, given the current psychological thinking of the time, the doctor thought it was 'unwise' for a father (a man) to give injections to a pre-pubescent daughter! So he, and I, sadly turned over the shot tasks to my mother (who was a nervous wreck). She would start to jab me, meet "resistance" and stop, then jab me again, meet "resistance" and stop... this could go on for 5-10 times per shot. It's surprising that I didn't spring a leak. Each shot site was surrounded by several tiny puncture marks!
My mom was advised not to inject in the same place every day. So she developed a "graphing" system, on my buttock cheeks, using mercurochrome dots, in a 5 x 5 grid pattern. On my first visit back to my pediatrician, he noticed "an odd, geometric rash" on my behind and was puzzled. My mom had to explain her system. He laughed and I was very embarrassed.
So I very quickly learned to give myself my own injections of insulin, using the Busher Automatic Injector, a contraption that held the syringe and would automatically inject when you pushed a little lever.
I also learned to test my urine for sugar with CliniTest (which made me feel a bit like a mad scientist). Not terribly accurate but the best that was available at the time. I quickly learned how to cheat the test to get good results (use more water, fewer drops of urine and shake the test tube before the fizzing stopped). I got good numbers which were not very accurate but at least I didn't feel like I was failing a test at school.
Around 1970, I got one of the first blood glucose monitoring systems -- the Eyetone Reflectance Meter. It was big and clunky, weighed about 3 lbs, cost $400 and certainly wasn't digital. I would apply a large drop of blood onto a strip and wait a minute, then squirt water on the strip and blot it. Then I'd stick the strip in the little window and the pin would bounce to an approximate reading. It did however provide a much better reading than urine testing. Amazing!
How do you feel about all the new D-technology?
My fascination with technology started as a child, playing with telephones. It continued when I was selling computers (the first Apple Mac and the first IBM-PC with a 5mb hard drive for $5,000) in a department store, next to the piano department.
When it came to blood glucose meters, I always wanted the newest, the fastest, the more accurate. I still marvel at the tiny meters that supply results within 7 seconds! Wow!
Then I got my first insulin pump... and instantly fell in love. What a boost to my control and freedom! Could it get any better? YES, with the continuous glucose monitoring system. I got one of the first Dexcom 3 systems and then one of the first Abbott Navigator models. I've become an outspoken advocate of CGMs, despite their errors and inaccuracies.
What impact did diabetes have on your family?
Through my teenage years, having diabetes altered the dynamics in my family. My older sister grew resentful and my parents argued about the best way to manage my diabetes. My mom felt so guilty that she and I would "snack" on candy and tubs of ice cream, to soothe the anxiety. To this day, I am just grateful I survived.
But I also saw how much they loved me. My dad threw himself into activities with ADA and then the early days of what was then called the JDF (Juvenile Diabetes Foundation). He ran diabetes clinics at local schools, some of the first Walk to Cure Diabetes events, and he asked anyone who came into his office for a contribution before they could discuss business.
JDRF has evolved quite a bit over the years, too. What do you think about those changes?
We got involved with JDF in the early days, listening to (original founders) Lee Ducat and Carol Lurie talk about the urgent need for research to CURE diabetes. They lamented that ADA was really set up for the medical industry and patient support but no efforts towards finding a cure. That's when I began to understand the economics of diabetes. In the early days, JDF NY would hold a Rolls Royce limited raffle... $100/ticket. Anyone who came into my dad's office to conduct business couldn't start the conversation until he had purchased at least one ticket. I've always been involved in JDF fundraising and participated in many activities, and have also always been involved with one-on-one counseling whenever they asked me to talk to someone or conduct "rap sessions" for young adults.
I have quite a bit of discomfort with the new direction of the funding and change of goals of JDRF. I always wanted to know that they were focused 100% on finding a cure. Now, the cure is only one of three goals. While I do understand their directions, I still would be happier to know all the monies I raise go directly to finding a cure. And I am stunned at their name change! I understand the need to eliminate the word "juvenile," but if I just say I am fundraising for JDRF, I can't tell you how many times I've been asked if that is "that Jewish Defense thingy."
So are you still involved with JDRF or doing other advocacy work?
I continue to host my walk team, which is heavily supported by my husband's Rotary Club. I run an amazing support group in Orange County for T1 adults, mostly women (although lately we are opening up to T1 males and to spouses). Our mailing list has about 50 people, we meet about quarterly to just gather and talk or to discuss specific topics. I am getting more and more interested in the topics of coping with frustration and fear about medical care. I've been compiling a list of endocrinologists in Orange County, along with reviews, since a topic that always comes up is "Who's your doctor and do you like him/her?"
OK, tell us a little more about your world outside diabetes?
I started a career in the corporate world in marketing but left that to start an exercise business, which seemed like a healthier and more fun choice. And it was fun, including work for (exercise guru) Richard Simmons in Los Angeles. I continued to teach exercise, expanding into yoga while also working as a marketing manager in the field of artificial intelligence for Texas Instruments and other smaller systems. It was all very exciting and I was beginning to pay closer attention to my health and my diabetes management.
I was going about my life, merrily. Along the way, I met my husband, Richard, and we merged our lives. He is an amazing advocate, and being an engineer and technical designer, he readily plotted all my charts, ran regression analysis, more than I ever wanted. I developed a passion for dogs, starting with my first, toy poodle, Ginger, who taught me to pay attention to my needs and emotions. She was a great Zen master and I learned. Now, I have a website called www.3DogArt.com, which is an online boutique shop that sells dog-related art, gifts, jewelry and books.
I currently have two pups: Hey Buddy is a Westie, full of personality but a sensitive boy (his middle name is "I'm Busy") and Bon Bon is our Lhasa Apso, just a sweet, easy angel.
And how did your new book, The Savvy Diabetic, come about?
Around July 4, 2008, I'd flown to Long Island, NY, to help my elderly mom move closer to us on the West Coast. We were two days into the seven-day trip to completely pack and move her and suddenly -- BAM, I developed appendicitis! I called a doctor friend back home who told me to get to the ER and not wait until the morning or when I got back to California. I didn't have time for this, but mostly I was not prepared. I didn't have all my medical info and now I was faced with all new doctors. And I was scared! Suddenly I was out of control, needing to communicate my medications, my diet, my other health issues, facing anesthesia.
Needless to say, I survived. I found a good surgeon and was out of the hospital in 36 hours, back to packing up my mom for her big move. Since then, I have been hospitalized three more times (also not related to diabetes) and had several outpatient surgeries. And I've learned so much about how to survive "the system." I have traveled extensively, which has taught me more about how to survive while on the go.
Last year, I decided that I wanted to and needed to share what I had learned. It started out as a story specific to my hospital experience, since that terrified me and taught me how to do it better. But as I asked type 1s for input, other topics popped up. So, the book offers tips, tools and techniques for living well with diabetes -- including: managing your medical team, identifying and training your advocates, coping with ERs and hospitals, traveling, handling family life, including decisions of having a baby, dealing with the unexpected and how to be prepared, thoughts on giving back to the community, and overall just finding humor and laughter despite this disease.
It was just released, and now I'm working on a second book that focuses more on coping with life with diabetics, using more input from those of us living with diabetes. Then, I'm hoping to extend this concept into other medical conditions such as Crohns, RA, MS and Alzheimer's.
It gives me great joy to share what I've learned as well as hear others' stories of survival and triumph.
Joanne's new book, The Savvy Diabetic, is available on Amazon in print for $18.95, and in Kindle format for $9.99.
Thank you Joanne, for sharing your story, and we're looking forward to being able to celebrate your upcoming 50-year Joslin medal with you in just two years!