Happy Valentine’s Day Type 3s! Happy Valentine’s Day Type 3s!

 

Happy Valentine’s Day to everyone, and especially to our Type 3s – partners and spouses who live with our diabetes – and yet get none of the credit. 

I can only imagine it must be like sitting in the passenger seat of a car wanting to grab the wheel when you see your mate start driving into an embankment or veer off toward the shoulder – feeling powerless and helpless to course correct – and weighing when do you hover, anticipate, plead, get upset or just stand lovingly by. 

So today I’m saluting you, our loved ones who keep loving us with diabetes and who watch over and support us. 

I also want you to know there is a group function just for male Type 3s to come together and share their feelings and frustrations, perhaps see what we live with a little more clearly and learn how to lovingly help in our disease management. 

Diabetes Sisters’ annual “Weekend for Women” conference – May 3-May 5 in Raleigh, North Carolina – offers a parallel track at the conference for male Type 3s called “Partner’s Perspective Program.” It’s for partners, spouses and significant others of we women attending the conference.Brandy Barnes, founder of Diabetes Sisters’, and her very loving husband Chris, saw the need and how such a program would benefit both our men and ourselves. 

From the male viewpoint Chris says, “As partners of women with diabetes, we really do want to better understand their disease and how to best support them so that they can live full lives with diabetes for many years to come.  The success of last year’s program illustrated that this valuable program is filling a large void that has been overlooked for many years.”

The Partner’s Perspective Program kicks off on Friday night from 6-10pm with a fun, relaxing social event.  Saturday morning commences with Partners Perspective attendees walking through historic downtown Raleigh, NC in the Diabetes Awareness Walk to support their partners with diabetes publicly. 10am-5pm partners participate in separate education/breakout sessions  chock full of educational information about diabetes to help them better understand and support their partner. There will be lots of “how to” discussions from leading experts who understand the physical and mental challenges faced by women with diabetes. Then, partners join their loved ones for a celebratory lunch and watch their spouse/loved one be publicly recognized for the number of years she has lived with diabetes. Sunday, partners will join back together again for a fun social activity in downtown Raleigh, NC.  

“Weekend for Women” runs May 3-May 5 in Raleigh, North Carolina. I’ll be there, among many experts, leading a workshop on how to “Ignite Your Diabetes-Power.” Join us and make it an event you can go to with your partner and both go home and talk about. Register here

When I told my husband, now of 11 years, shortly before the wedding, “Maybe you want to think twice about this. You know life with a diabetic will be uncertain…” he didn’t miss a beat. “I’m with you and you’re with me,” he said, and he’s been saying it ever since.


Volunteer abroad and empower children with diabetes

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Here’s an opportunity I wish I could take advantage of, but unfortunately I am too old, oh yes, and I don’t speak Spanish. But if you are a young person, at least sixteen years old, do speak Spanish and would love to have a life-changing experience empowering young people with diabetes, AYUDA (American Youth Understanding Diabetes Abroad) is for you.

AYUDA is looking for volunteers to help children with diabetes in Ecuador and the Dominican Republic. You don’t have to be in medicine and you don’t have to have or know about diabetes, you will be trained. 

The Dominican Republic program runs mid-June to early July. The Ecuador program runs mid-July to early August. Applications are being accepted now until February 1 and here’s everything you need to know. 

Have a safe and wonderful journey.

“My Sweet Life” shares women’s success stories living with diabetes

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Calling all patients – whether you’re newly diagnosed or have been living with diabetes for decades – and health care providers. 

 

There’s a new book hot off the presses, “My Sweet Life: Successful Women with Diabetes.” Published by PESI HealthCare, “My Sweet Life” is available for pre-order now and will be widely available next month, diabetes month.

 

“My Sweet Life” brings together twenty plus stories from successful women who have found a balance in their personal, professional and diabetes-management lives. One of the themes in the book is how diabetes can be viewed as a blessing in disguise. 

 

Clinical psychologist and CDE, Beverly Adler, gave birth to the book. I happen to know because only two months ago I was writing my story to be included in this compilation. While there seem to be a number of books that feature inspiring stories of living with diabetes this one is strictly of women, and predominantly women with type 1 diabetes. While a type one woman will no doubt see herself in these stories, I imagine there are things a woman with type 2 will relate to as well. If you’re a man married to or dating a woman with diabetes, particularly type 1, it may give you greater insight what your woman deals with.

 

Living with a chronic illness we all – newly diagnosed and long-timers – need to dip into a well of inspiration and hear each others’ stories every so often to feel less alone and recharge our batteries. Patients will find it here. These are stories of women accomplishing their dreams and, every day, dealing with the realities of living with diabetes.

 

Health care professionals may better understand what it’s like to live with insulin-dependent diabetes and how diabetes not only doesn’t have to stop anyone from accomplishing their dreams, it can actually be the jet-fuel. With that in mind, you may see a different, more hopeful, future for your patients. 

 

This may encourage you to approach your patients with an expanded view of what’s possible for them and find your relationship with patients and their outcomes improve. Within these pages are what you can’t get in an office visit; the deeper insights of what your patients live with, the intense management and how they balance their diabetes and their life. 

 

I’m joined in this book by an illustrious group of women including many well-known diabetes bloggers . 

 

List of Contributors:
Brandy Barnes, MSW
Claire Blum, MS Ed, RN
Lorraine Brooks, MPH, CEAP
Sheri R. Colberg-Ochs, PhD
Carol Grafford, RD, CDE
Riva Greenberg
Connie Hanham-Cain, RN, CDE
Sally Joy
Zippora Karz
Kelli Kuehne
Kelly Kunik
Jacquie Lewis-Kemp
Joan McGinnis, RN, MSN, CDE
Jen Nash, DClinPsy,
Vanessa Nemeth, MS, MA
Alexis Pollak,
Birgitta Rice, MS, RPh, CHES
Kyrra Richards
Lisa Ritchie
Mari Ruddy, MA
Cherise Shockley
Kerri Morrone Sparling
Amy Tenderich, MA

Heartha Whitlow

How to politely tell diabetes-do-gooders to “Stuff it!”

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Now you can tell family members, friends, colleagues and your mother-in-law to “Stuff it!” when they get in your face about how you’re managing your diabetes. You know, that finger-wagging, judgmental tone and unsolicited comment about, “Should you be eating that?” or “What’s your blood sugar?” As if all this work wasn’t enough.

That’s because the Behavioral Diabetes Institute (BDI) – founded by Bill Polonsky – have put out these nifty little Etiquette Cards to keep those of us who live with diabetes sane – and safer – from interfering busybodies and self-ascribed do-gooders. 

The mini (2″ x 3″) pocket-stuffers to keep people from getting in your hair have 10 tips each, such as these:

• Don’t tell me horror stories about your grandmother or other people with diabetes you have heard about, and

• Do ask how you might be helpful

In fact, even kids with diabetes can tell their parents to “Stuff it!” because they now have a card just for them equipped with great tips like:

• When my blood sugars are high, don’t assume I’ve done something stupid (although I may have), and

• Recognize that I am never going to be perfect with my diabetes care, no matter how much you want this

There’s also an all-purpose educational mini card called, “Don’t Freak Out! 10 Things to Know When Diagnosed With Type 2 Diabetes.” Including tidbits like:

• No, it probably isn’t a mistake, and

• Ignoring your diabetes after being diagnosed is a very bad idea

I joke, but these provide great little tips both to educate one’s self and those around you. If you haven’t heard of the BDI it’s one of the very few diabetes centers that help patients cope with the emotional stresses of diabetes: burn-out, depression and being off-track with your management through seminars and workshops. 

You can download the Etiquette Cards or send away for them.

Create a support network that helps you manage diabetes

Everyone living with diabetes does better with support. And now there’s a new APP that can help anyone build a personal support network so they don’t have to do diabetes alone. 

I’ve just developed 3 FREE great short, smart videos to help you invite people to be in your circle of support. There’s an APP under “EatSmart” ‘Build Your Personal Support Network’ or you can also find the videos online on the left hand side of the page under “Build Your Personal Support Network.” 

Video #1- Will help identify what you might need help with – for instance perhaps a drive to the doctor’s office, a walking buddy or someone to learn healthy cooking with, and, who might be available from your circle of loved ones and acquaintances to be on your team.

Video #2 – Gives you tips how to ask for help in ways that people will want to help you. Yes, it’s a little bit science, a little bit art and a lot of just being honest, open and appreciative.

Video #3 – Gives examples how you can use people’s help to help you develop and maintain healthy habits. 

Take a look and a listen. It will only cost you a few minutes of your time and there’s so much to be gained. I don’t know what it would be like having to manage my diabetes without the support of my husband and several of my great friends. 

Peer-mentors help patients succeed with lifestyle changes

One piece of news that came out of the 71st scientific American Diabetes Association conference this past week in San Diego wasn’t scientific at all, but may be one of the most hopeful.

As reported in MedPageToday, unpaid, volunteer patients with diabetes took a 25-30 hour training program to help lead other patients to improve their lifestyle habits. And it was a roaring success. Blood glucose monitoring and physical activity increased, blood pressure and body mass index decreased, people ate more fruits and vegetables and stuck better to their medicine regimen.

“The most important resource in my practice is not my colleagues or other physicians, it is the patients we have in our center,” said Garry Tobin, MD, associate professor of medicine at Washington University. “We have patients who have had diabetes 50 years and that experience has been able to make them successful in controlling their disease, and this gives them the opportunity to go back out into the community and be successful in helping other people.”

Martin Abrahamson, MD, associate professor of medicine at the Joslin Clinic/Harvard Medical School, Boston said, “We are looking into doing similar programs among our patients.”

In the US where there are 26 million people with diabetes and 80 million with pre-diabetes and only 15,000 diabetes educators and less and less endocrinologists coming out of med school every year, education will have to come from another source – successful patients.

If you don’t know, there is a program called the A1C Champions, which I belong to. If you are a health care provider working with diabetes patients, check it out. It’s free and I can tell you from personal experience – the power of patients hearing the same thing you’ve told them, but from a patient living successfully with diabetes, becomes a source of motivation and inspiration, and often moves patients to action they wouldn’t otherwise take.

The value of having a personal support network

An enthralled audience for my home recording session

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 A month ago I was asked to create a video about the value of having a personal support network living with diabetes.

I immediately reached out to tens of patients to ask whether they had a support network, who was in it and what it gave them. 

I got answers like: 

My sorority sister and college roommate has been my friend who has listened when everything about diabetes has been a “bitch” from diagnosis to 36 years later. She has consoled, encouraged me, kicked my butt when I needed it, laughed at crazy things, cried with me when it just got to be too much…all the time letting diabetes be the smallest rather than the biggest part of who I am. 

My husband is my life line. Without him I might not be here to type!!!

My grandchildren, when they are with me are always reminding me to take my blood sugar or my shot. They like doing it for me and it is such a motivation for me because they are learning with me.

My entire family helps me – My wife reads the back label of all purchases at the grocery, my grown children drink “preppy micro-brew beer” but always have light beer in the house for me, during family celebrations my 87 year old mother always makes sure there is fruit for dessert. 

From the moment of my diagnosis, my partner Dan has been there. He held my hand in the emergency room (I was in DKA), told me that he would help with all of the new eating habits, and has been there ever since. He helps with meal planning, keeping an eye on the barristas at Starbucks (um, she said no syrup), and always kindly saying “you seem low.”  He also never does the peeking at my meter – he respects my privacy but is always willing to help if I’m high or low.

What I know from the answers I received and my own supportive partner – who carries glucose tabs and sweeTarts wherever we go as back-up, points me toward interesting articles and is always ready to listen when I’m on the edge of burn out – is the rock bottom value of having people in your life who are there for you.

The video I wrote and recorded will actually be a series of three – 1) Introduces the value of having a personal support network and helps you assess who’s in yours,  as well as what you could use help doing; 2) 10 tips on how to communicate effectively to have family, friends and acquaintances join your support network; and 3) 10 tips how to leverage others’ help and support to maintain healthy habits. I will keep you posted when and where they’re available.

For now, however, I couldn’t resist showcasing my excellent audience during my recording session. Truly, they were mesmerized; they didn’t make a peep or move a muscle!

More “After The Diagnosis”

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My last post was about the book I’m reading by kidney specialist, Dr. Julian Seifter, After the Diagnosis.

Last night I read two other thoughts Seifter expresses that I thought worth posting. He talks of the human spirit being able to find possibility and joy even in the face of devastating illness:

“Illness represents a hard limit – an unyielding reality that closes off possibility, compromises freedom, undermines desire and hope. At the same time, being sick opens up unexpected opportunities for creativity and growth. By taking away the ”taken-for-granted,” illness invites, even forces, new awareness and new learning. 

By exploring parts of the self that were once hidden by everyday routine, a sick person can find his way to creative expression, personal transformation, emotional enrichment. And though being sick is hard, very hard, it’s not the end of playfulness and joy. All of us who suddenly face an illness can discover within ourselves these capacities.

Facing up to adversity is less a matter of deciding to be strong than of letting go and seeing what comes next. What is most required “after the diagnosis” is the capacity to stay open to experience. By letting life happen and time go forward, we can hold onto future hopes and present meanings. 

What I take away is that there is still hope and love and joy even when life turns upside down and things look their darkest. What I know, from personal experience, is that you can let go and feel a kind of freedom even while living with chronic illness, when you know you know enough to manage your illness well. 

 

 

The Diabetes Resource web site

What’s a blogger to do when she’s going to be away for a few weeks and can’t post except from home? Well, one thing is I’m working on solving that problem, but not in time for the next three weeks I’ll be away. So, I will leave you with this post and the next that give you something to do. Of course, you have to promise to come back the end of the month.

Take some time to check out my fellow blogger, Gina Capone’s, fabulous new web site, The Diabetes Resource. This one-stop, convenient and easy to navigate site covers everything related to diabetes; from camps to monitors…professionals to articles and chats, and it is updated daily. Remarkably, this is the only site that puts the whole spectrum of diabetes resources in one place. 

Check out:

1. A directory of everything under the sun related to diabetes, i.e. magazines, pregnancy, celiac disease, dieting, diabetes drug companies, home delivery services and on and on and on and on…………..

2. Events happening in your neighborhood and around the country

3. A chat room every Wednesday night

4. Great articles 

5. Advertising

“I developed The Diabetes Resource to take the hassle out of searching the web and navigating site after site to get the critical information you need when you need it,” said Gina, herself a type 1 since the age of 25. “I tried to think of everything I could that related to diabetes and then brought those resources together at one location, one web site.”

“The Diabetes Resource is the first web site dedicated solely to consolidating and bringing organization to all of this information and I welcome that,” said Kitty Castellini, Founder and President of Diabetes Living Today™, a popular radio program dedicated to discussing issues pertaining to diabetes.  

So, take a look. It should keep you busy and allow me to feel less guilty.

A type 1 support group for women in New York City

A support group for women ages 18 to 35

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 The other night I met with a young woman, Katie, at a tea shop in lower Manhattan. She’s a social work student and has single-handedly put together a type 1 support group of young women, a rarity in New York City. They meet at the Friedman Diabetes Institute at Beth Israel Hospital (317 E. 17th Street) every second and fourth Tuesday of the month from 6-7:30 PM. If interested, you can contact Katie at: DiabetesNYC@gmail.com. I was meeting Katie because she was interested in my coming to speak to the group.

On the subway ride to the tea shop I thought of the several things I could talk about. I could talk about the principles in my book, The ABCs Of Loving Yourself With Diabetes. About how if we focus on the good things in life like love and friendship, think back to how we’ve overcome obstacles in the past and call upon these same strengths dealing with our diabetes, and be kinder to ourselves as we try to manage this slippery slope of blood sugar numbers, that we will be more capable to manage our diabetes.

I thought about my book that will be on bookshelves this summer, 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It and that I could talk about the most common myths that even well educated patients believe, and clear up the confusion. Now that would be a lively discussion!

I arrived five minutes early to the little Greenwich Village outpost and after surveying the more than 50 varieties of tea took a seat at a small table in the front of the shop. Katie walked in right on time and fit her self-description: black coat, dark curly hair, red messenger bag. We greeted each other and after bringing back our pot of tea began to talk. When I asked Katie, “Is there anything in particular you’d like me to talk about?” She said, “Yes, could you talk about relationships?” Relationships? Me? And so I asked, “Relationships? Me?”

She said, “I read your article, Love and the Juvenile Diabetic and it really touched me, and our members being young women are really concerned about dating and boyfriends, like how do you tell someone you’re dating you have diabetes and when do you tell? Relationships is on the top of nearly everyone’s list.” Wow, I thought, being happily married for the past seven and a half years has wiped out my memory. For surely I felt that way in my 20s and 30s. I told Katie I could share my own experience, but I had no credentials to talk any more expertly about what her young women should or shouldn’t do, only common sense like, feel your way, trust your gut, tell your partner what he or she can do that would be of help to you and if they ignore your needs, run, run, run in the opposite direction.

Thinking about it on the train home I began warming to the topic more and more. When I told my husband what Katie wants me to talk about he said, “Maybe I should come too and represent the other half.” Well, we’ll see, we’re letting the women vote on that.   

So maybe now I’ll be able to add a new line to my bio: the Carrie Bradshaw of diabetes relationships. In case you’ve forgotten, Carrie Bradshaw was Sarah Jessica Parker’s lovable relationships columnist on the HBO sitcom/drama “Sex and the City.”