My Life With Diabetes

Forty-six years of coping with IDDM hasn’t stopped me!  I’m a published, award-winning poet, an actress and, in my “retirement,” a vocalist.  All this from a girl from a far off place known as The Bronx – and a policeman’s daughter, no less!

I retired several years ago and will be 65 in June. In my retirement, despite my diabetes, I’m nurturing talents and realizing life-long dreams by pursuing a successful new vocation: entertaining.

The two acts that I’ve developed are flourishing. The first, Merilee’s Melodies, includes me as the vocalist, accompanied by a talented jazz pianist. We travel to libraries, senior residences, women’s groups, temples and assisted living centers around Long Island (where we both live,) presenting one-hour musicals.

For our elderly audiences, we bring music of their time – Tin Pan Alley and swing, including the Gershwins, Rodgers and Hart, Billie Holiday, Rosemary Clooney and other greats. We invite audience participation, and once the interaction gets going, everybody has a fine time.

After I retired, I discovered that I had a knack for writing. That’s when I teamed with my colleague and friend Jerome Coopersmith, a Tony-nominated dramatist (who was also a writer for the Hawaii 5-0 series, among other TV productions), to create my second act, “Your Neighbors, The Writers.” We create and present themed programs of original works at such venues as VA hospitals, and for such organizations as the Social Security Administration.

Who does the booking for all these gigs?  I do! Before I retired, I worked as a press agent and picked up such skills as researching venues and booking clients into them. So, naturally, booking falls to me. Ingredients needed: creativity, energy, intelligence, diligence and drive. My good health, happily, has allowed me to apply all these things.

Gigs Galore

After my mom died five years ago, a friend who was a recreation director at a senior residence suggested that, to help me through my loss, I volunteer.  From that came my weekly singing appearance in front of Nassau County’s RSVP group  of retired seniors volunteers.

With my temple’s Sisterhood, I’ve served for years on the committee for our annual membership dinner and fashion show. For me this means running around town soliciting raffle prizes. Due to my hypoglycemic unawareness (of 20 years duration), I don’t drive.  So, every year my darling husband chauffeurs me around to local vendors, who take one look and say, “Merilee’s here for the temple show. Get out the gift certificate book!”

Through the years, I’ve maintained my figure, so I’m also able to lend these events my modeling, as well as stage, talents. A vital part of that has been staying fit. Fitness is necessary for health, as well as vocational success.  That’s why I work out three times a week at the gym.

It Wasn’t Always Like This

Years ago, when I was less accepting of my diabetes, and, therefore, less diligent about my control and unsure of my BG at any time, I feared tackling projects.  When I resumed performing four years ago, I was uncertain at first. I worried whether my brain would have enough glucose while I performed. Now, despite my hypoglycemic unawareness, close self-monitoring permits me to know blood sugars pretty well. This allows me to perform, or treat a high or low BG, and get on with things.  welve to 15 tests daily do the job.

Still, despite my best efforts, things don’t always go smoothly. Years ago I’d get angry with myself, treat a high BG with insulin, then comfort myself with high-glucose foods – totally inappropriate.  These days, when I get a high BG, I am now wiser, and more knowledgeable and experienced. Despite my disappointment, I treat with insulin then don my Sherlock Holmes cap and go searching for the cause.  With so much to do and look forward to, I just don’t permit myself to dwell on setbacks.  I take the necessary insulin and get on with my daily activities.  When necessary, I transmit my BG numbers to my endocrinologist and ask for his input.

I’m fortunate to live in this time of advancements in technology, science and medicine.  Recently, I switched my basal Lantus, from one dose to a split dose.  With three alarms, my trusty digital wristwatch announces the time for my a.m. dose and another for my evening dose. I set the third for my two-hour post prandial BG test.

I chose not to have children. But my husband of 35 years, Herb – creative, sharp, talented and caring – has supported me all along the way.  Together, we’ve “learned diabetes” – invaluable to coping.

Some Advice for the Newly Diagnosed

Attitude is vital to one’s success, I believe.  If you’ve got to have a disability, being blessed with the smarts to take care of it, talent, drive and super support foster fulfillment.

To any newly diagnosed diabetic I’d recommend first, accept the condition, get educated and join support groups, and then get on with your life.  Find the things you enjoy and go for them.  Remember, diabetes is a chronic condition over which we are the masters.

Do I have any spare time, you ask?  Well, my schedule is usually packed, but with my hubby or friends I make enough time to enjoy such pleasures as jazz shows, theater, films and get-togethers.

With my music and writing/acting careers flourishing , thanks to Merilee’s Melodies and “Your Neighbors, The Writers,” as well as good health and the support of a loving mate, I couldn’t be happier!

Story from: Diabetes Health

I was diagnosed with type I insulin-dependent diabetes 54 years ago at the age of 22 months. A dear family friend suggested my parents take me to our family doctor and have me checked for diabetes after I showed some of the more common symptoms. I was unusually cranky and always hungry, but had a stomach that was hard to the touch as though food was not digesting properly. I was also always thirsty, drinking a lot and urinating frequently. Our doctor tested my blood sugar, and the result was high enough to indicate diabetes. He put me on 60 units of insulin per day and told my parents to take me to the hospital 30 miles from the little Western Kansas town where we lived to get a shot of insulin once a day.

Because I was such a small child, I had one insulin reaction after another on that dosage. My parents were forced to seek other medical advice when this doctor would not listen to what they were telling him or consider making changes in my treatment.

My loving parents then took me to another doctor, Dr. William Brenner, for whom they had a huge amount of respect. Dr. Brenner had grown up in my father’s hometown, so my parents knew him well. He was a man of great character, compassion and integrity, who had survived the infamous Bataan Death March in the Philippines in World War II. His practice was in Larned, Kansas, a town 60 miles away. Dr. Brenner agreed to treat me as his patient, but only if my parents first took me to a diabetes specialist who practiced in Wichita, Kansas.

My parents, who were willing to do anything it took to aid my survival, did so. The diabetes specialist told them it was a wonder I had survived being on 60 daily units of insulin. He sent me home on two units of insulin a day. Both he and Dr. Brenner told my parents they had a choice: They could raise me as a “normal” child or they could raise me as a child with a crippling disability. To their credit and my joy, my parents chose to raise me as close to normal as it’s possible for a diabetic to be. My life, to this day, has surpassed most expectations.

Very Different from Today

When I was first diagnosed, glass syringes, which had to be boiled for sterilization purposes, were used to administer shots, and blood had to be drawn at a hospital lab to determine exact blood sugar count. At home, blood sugar ranges were imprecisely measured by urinating on special strips. Fortunately, diabetes care has improved a great deal. One of the most important aspects of care is still the same: A person with a chronic condition needs to be her own case manager and to be very much in tune with her own body. During my life, I have had both wonderful doctors and those who treated all diabetics the same and were not interested in listening to me. As my own best advocate, I have changed doctors if needed. I consider it essential to be able to talk with and to my health care providers.

Having much to learn, there was any number of ups and downs as I grew. When I was young and had the flu, I’d end up in the hospital for a week or so. Now if I get the flu, I stay at home and take care of myself. I spent six weeks in the hospital as a sixth grader while our doctor worked at stabilizing my blood sugars. I was previously described as a brittle diabetic, and the blood sugar swings that go with that diagnosis are with me to this day.

Adolescence was a major challenge, and a time when I put on a lot of additional weight. My body had quit growing, but I continued to feed it as though I still were. College was my first time of being away from home for any length of time, and it necessitated a lot of quick learning. The importance of sharing my condition with those around me was reinforced. For example, when I didn’t show up for class one day, my instructor called the “dorm mother,” who checked on me and helped me get treatment for a serious reaction. If I had not shared information about my disease, I might have suffered severe damage from lack of treatment.

Except for one year of living with my sister after she graduated from college, I lived on my own from the time I graduated from college at 20 until I got married at age 47 to a man with custody of his four birth children. In those years of living alone, I learned how to handle both my food and my insulin needs. Some of that learning included times when I voiced resentment about being diabetic and chose to eat what I wanted, when I wanted it, while attempting to adjust my insulin dosages to my desires for food.

Workshop Made a Great Difference

Over the years I’ve had some seriously frightening insulin reactions where I was unconscious and convulsing, but not many and they have always occurred around members of my birth family, who have learned a lot over the years about how to help me when I was in no condition to take care of myself. These reactions led me to attend a weeklong diabetes workshop offered by Dr. Richard Guthrie in Wichita, Kansas, nearly 25 years ago. Much that I heard I’d already learned from living with the disease so long, but the information and the treatment plan that were new to me later made a huge difference in the way I have since lived my life and cared for my physical needs.

November 2007 marked 56 years of living with a chronic condition that is often crippling or fatal. Because it was true for that period of time, the doctors told my parents that I probably would lose my vision and would be lucky to live to the age of 18. From the time I was old enough to understand, medical personnel have preached to me about the importance of taking good care of myself and the possibility of complications arising from poorly controlled diabetes.

I was not always a willing listener. But over the years I have learned to be more self-disciplined largely due to my spiritual growth and a desire to avoid complications of diabetes as long as possible. I’ve also managed two trips to Europe and two trips to Hawaii without incident, and I’ve taught special education for 34 years–demanding but rewarding work.

My control of my diabetes has never been perfect, and I doubt if it ever will be. The only major complication I’ve dealt with so far is a microscopic heart attack, followed three years later by quadruple bypass open-heart surgery. A minor complication is having been diagnosed with cataracts on both eyes, which were removed more than 10 years ago, followed by laser surgery on each eye. Another blessing I thoroughly enjoy is that I currently have 20/15 vision while wearing prescription lenses.

So Many Good Reasons for Living

I consider the present length of my life and my general state of health to be gifts from God. But He also makes me aware that my attitudes about self-discipline (very important for many reasons) and giving my best effort without berating myself when what I try doesn’t work are also important factors in my good health.

Give yourself reasons to live a long, healthy life – mine center on my relationships with God, husband, children, sister, dad, other family members and friends – and choose to avoid complications by (1) eating in ways that aid blood sugar control, (2) exercising mind and body, and (3) taking your medicines as directed. Don’t live in fear. Diabetes requires serious respect and serious effort, but it doesn’t have to be a quick death sentence. Don’t give up on yourself – enjoy life to the best of your ability. I am saddened and horrified that I hear of so few diabetics who have lived as long and healthy a life as I have, and I want to say to all who read my letter that life with diabetes can be good. Mine is!

LuAnn’s Secrets to Living Well With Diabetes

1. Focus on your relationships with God, family and friends to give yourself reasons to live.
2. Control your blood sugar by what you eat, get mental and physical exercise, and take your medicines.
3. Do not live in fear

Story from: Diabetic Health

What do an African medicine man, a diabetes researcher, a feminist philosopher, and a Native American psychologist have in common? They are all part of a new documentary, now in production, dealing with the psychological component of living with diabetes.

I was in the middle of my dissertation on diabetes when the idea for this documentary hit me. As someone with type 1, I wanted to understand how living with the condition for so many years influences people’s identity development. This question became the topic of my dissertation and led me in surprising directions.

As I delved into the research in this area, I realized that diabetes researchers focus primarily on the negative aspects of living with diabetes. Few researchers talk about how people can develop in positive ways as a result of dealing with this kind of adversity. I knew from personal experience that it isn’t true that diabetes has only a negative effect. So I turned to literature that discussed the other side of living with illness. Some was written by people who actually had chronic illness, and some was written by people who had explored the issue of suffering.

I discovered two writers who really changed the way I thought about diabetes. They came from completely different backgrounds, but they were actually saying the same thing.

The first person was well-known African medicine man Malidoma Patrice Some’, whose book, The Healing Wisdom of Africa, was assigned to me in graduate school. In Malidoma’s tribe, a crisis, such as a diagnosis of diabetes, is viewed as an initiation to a new phase of growth. Instead of being seen as a horrible disaster, a diagnosis is perceived as an opportunity to develop greater wisdom.

It Takes a Village

Malidoma feels that in order to successfully make it through a crisis, we have to draw on community and elders. He asserts that people can be elders at any age as long as they have developed a certain level of maturity and wisdom. He views people who have lived with a chronic illness like diabetes for many years as elders.

The other writer who influenced me was philosopher Susan Wendell, who has lived with chronic fatigue syndrome for the past 20 years. Dr. Wendell believes that when people with chronic illness spend many years developing wisdom about how to deal with pain and suffering, they become a valuable resource for people both with and without chronic illness. She explains, “We don’t talk as much about the experience of illness as we talk about how to get over it, how to stop it, how to prevent it, how to relieve it, how you can be healthy if you really try. We don’t look inside the suffering, past the wall of suffering, to see what’s behind it. I think there’s an enormous body of knowledge out there, among people who are suffering, that is untapped, and if we could tap into it more, we’d be less afraid, and we’d know more how to cope when it happens to us.”

These ideas were amazing to me because they are so different from how we usually view illness. Coming to see myself as someone with wisdom to share was a revelation. Our culture focuses so much on the negative side of illness and suffering. Usually when I tell someone that I’ve lived with diabetes for 36 years they respond by saying “I’m so sorry” or “You poor thing.” Nobody has ever thought to pick my brain and find out what I’ve learned about the issues that are not only at the heart of diabetes but are also common to us all—uncertainty, loss, change, and mortality.

Documenting Diabetes

With these ideas in mind, I began the process of making a documentary about diabetes. I wanted to share the perspectives about illness of people with type 1 and type 2, as well as those of various psychologists, philosophers, and chronic illness scholars.

The film takes viewers through the journeys of three people who have lived with diabetes for 20 or more years. We refer to these individuals as “diabetes elders”—people of different ages who have acquired a wealth of knowledge and experience that can be passed onto others. We hear what it was like in the beginning when they were first diagnosed and then how they progressed through the years. The people with diabetes share not only what they’ve learned about living with the condition, but also what they’ve learned about life.

The project has gotten off to an exciting start with our first seven interviews, which include Malidoma Patrice Some’ and Susan Wendell. We recently completed our second shoot, and the whole production team was riveted by the interviews.

An image from the film

You Can Help Complete the Film

This project depends upon tax deductible donations. In order to continue filming, we must raise more funds. If you are willing to help get this film completed, there are many ways you can contribute. You can make a tax deductible donation through www.bloodandhoney.org.

You can also help by organizing a fundraiser or by connecting us to people interested in donating. We are also planning a music fundraising event, and we welcome introductions to musicians who might be willing to participate.

This is a non-profit endeavor. If the film generates more revenue than it costs to produce, I will donate the majority of the funds to starting diabetes support groups through the San Francisco branch of the Juvenile Diabetes Research Foundation.

Find out more about Blood & Honey

Jessica Bernstein, PsyD, is a psychologist who has a private practice in Berkeley, California, with a focus on people with diabetes. She can be contacted at jessica@bloodandhoney.org.

Story from: Diabetic Health