Glu, a social media site for type 1 diabetes, launches Nov. 1

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With the kickoff of Diabetes Month, November, a new social media site just for people with type 1 diabetes, loved ones and caregivers, goes online – myglu.org

Actually, it’s been online for some months with a handful of people testing it, but tomorrow it officially opens its doors. I also have a post on Glu about“Flourishing with Diabetes” which you won’t want to miss.

There’s something also revolutionary about Glu. Not only will it offer type 1-specific learning and information, and the typical sharing and support of members, but you will also be invited to respond to Daily Questions and short weekly surveys. 

The information collected goes to Glu’s MotherShip, the T1D (type 1 diabetes) Exchange. The T1D Exchange, will then disseminate the information to its partners: diabetes clinical, research, pharma, educational and outreach organizations, all who are working on better therapies and research toward a cure.

So now, thousands of us who live with type 1 diabetes, have a direct route to get vital and valuable information to the organizations that need it; those who are working to improve our quality of life. In fact, when you go to my post it will ask you two questions, as part of the information gathering.

To learn more about Glu and the T1D Exchange, check out my article on theHuffington Post.

If you have type 1 yourself, or you know someone who does, let them know Glu is open for caring, for sharing, and beginning to change lives.

A NYC Fundraiser for Dr. Jason Baker’s Marjorie’s Fund

 

Marjorie at Mulago hospital, Kampala, Uganda, February 2011

We were pulled together by a common cause – the ravages of type 1 diabetes in the developing world, where access to medicine and testing supplies are in short supply. 

Thursday evening I attended a kick-off fundraiser for Marjorie’s Fundthe passion-fueled outgrowth of Dr. Jason Baker, NYC endocrinologist. Baker, who got type 1 diabetes himself at the age of 25 while in medical school, established the Fund after meeting Marjorie, one of the many children who through geography – being born and growing up in Uganda – got type 1 diabetes at the age of three, and died at the age of 29 waiting for a kidney she never got.

But now I was sipping something bubbly, standing (yes, still in my bootcast) in a glitzy art showroom in lower Manhattan, talking to the owner of New York City’s premiere cheese shop, Murray’s Cheese, (one of the evening’s sponsors), but we were all there to support the cause.

Meeting Dr. Baker for the first time, I found him as earnest and kind as you would expect. And now you know this mission he has set himself upon is personal as well as professional: to increase education, care and research of type 1 diabetes in the developing world. 

If you donate just $20 you can provide one person with type 1 diabetes a month’s supply of glucose test strips. And feel you did something to make a difference. You will be inspired just listening to Dr. Baker as he stands amid the urgent need for supplies in Uganda. 

For me it was also a rare evening of meeting up with my fellow diabetes advocates. You’d think it happens more in NYC, but everyone’s so busy, we rarely see each other. So it was also a wonderful evening to see the faithful, and remember that what we each do counts amid the massive need, whether here at home or around the world. 

My husband was strolling the room with his camera, so here are a few pictures of friends and fellow guests, amongst whom were – CDE Claudia Slavin, who’s worked with Dr. Baker, in center, with CDE/Dietitian Susan Weiner and me, below, CDE Joy Pape and Susan and me, DiabetesDad, Tom Karlya who played Master of Ceremonies for the Silent Auction (to which I donated a number of copies of my book, “The ABC’s Of Loving Yourself With Diabetes”), Merith Basey, Director of International Operations of Ayuda with Howard Steinberg formerly of dLife, and Tom putting on his don’t-kid-me-now-face for the auction. 

 

Mystery solved: Calorie reduction or exercise for weight loss?

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Now that I’ve been off my game, well feet, for the past 3 ½ weeks – graduated from crutches to a soft bootcast and crutches (due to a badly sprained ankle) – I can answer the essential question first hand: which is better for weight loss, reducing your calories or exercise?

Answer: Reducing your calories. And now I know first hand. For the past month my one hour daily walks are gone. Since I hurt myself I’ve been barely walking further than from the living room to the kitchen (and that’s a mere 10 feet), yet I haven’t gained any weight. In fact, I’ve lost a few pounds!

What’s true is I’ve been carefully watching what I eat. Remarkably, not letting boredom, restlessness or frustration plunge me into all day snacking, binging or eating with reckless abandon. Well, except for last Friday.

But after my first week of high blood sugars due both to the stress of my injury and the lack of exercise, I made a conscious decision to keep my food intake healthy and not more than usual, and reduced my carbs  a little more than usual (and I already eat a low carb diet.)

If you’ve read the recent literature it’s all confirmed: When it comes to losing weight, cutting calories is most important. Exercise helps keep the weight off. And, many recommend strength training twice a week to get the most bang for your exercise buck in addition to aerobics like walking, running, swimming and biking. Strength training has you burning calories most of the day.

Of course I had told myself I was going to start doing something to get some upper body strength this fall when I’d finished writing my due-out-in-October-book – Diabetes Do’s & How-To’s.

But, really, I never dreamed it would be dragging my poor body around on a pair of forearm crutches

The ying yang of diabetes self-care or skipped my BS check last night

 

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Every night before I go to sleep I check my blood sugar. Every night, without exception for the past few years – until last night. 

If you read my last post you know I came back from my vacation to the Netherlands on crutches. I have a sprained ankle that is mending slowly, very slowly, and taking more of my energy – physical and mental – than I realize, and then I would normally allow. Tis true I can hobble around in my soft foam boot cast in the house, but no more than a few blocks outside my apt, and then on crutches along with the cast. Last night I could barely crawl into bed an hour before my usual bedtime and 15 minutes later the magazine I was reading dropped on my chest and woke me up. At which point I realized it was time to turn off my reading light. 

Knowing I should check my blood sugar, having moved my meter into the bedroom to keep at the foot of my bed so I can check before I go to sleep and first thing in the morning, I knew I only had to reach down and take a few minutes to prop it on the bed and check. But while my mind said, “Do it!” my spirit wasn’t willing. My spirit in fact said, “F#%K this S&*T! Why do I have to be constantly, rigorously so well behaved?!” This time I’m going to trust I’ll get through the night or wake up if I’m low. And if not, well, I tried. Must have been the exhaustion talking.

Obviously you know I got through the night. I even  awoke to a very satisfying 85 mg/dl. But this excursion in not doing my usual diabetes task made me realize how many tasks I do, and how I do them without question; they have just become part of how I live, quick and perfunctory habits.

This post is not about stopping doing the things we do to keep ourselves safe and well, but rather giving ourselves a pat on the back for all we do. When diabetes tasks become habits, which is great so they take less time and effort, they can also go unseen. In that we don’t see the effort they take anymore, the care we give ourselves. That is good for the doing of our tasks, but it’s also good to step back and congratulate ourselves for all we do. 

Tonight I’m sure I’ll check my blood sugar before I go to sleep. Maybe I’ll also smile while doing it knowing I have a lot to be proud of, how I work at managing my diabetes, and that I have a lot to be grateful for: the warm bed I’ll be in, the tools I need to check my blood sugar before I fall asleep, and those I need to get through each day. 

I’ll also know now and then when the spirit moves me, it’s OK to give myself a break. Hopefully, I won’t always need a bodily break to remind me or wear a physical boot to remind me when it’s time to reboot my energy. 

Home again, home again, hippity-hop

 

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Well it started great, and ended on crutches (notice on the cobblestones), my trip to Holland. I went over two weeks ago to celebrate my sister-in-law’s 50th birthday and see friends and family, my husband being Dutch. 

The weather was perfect, the cappuccino perfect, but the cobblestone streets tricky, and without warning I went splat tripping over a slightly raised curb I never saw.

It was one week into our 10-day trip. The husband was spending the morning in the hotel working, while I took a stroll through charming, historic Leiden. A university town with students coming back for the fall semester, it was abuzz with energy, café-sitting and good cheer. The sun was sparkling down.

Approaching a store window to take a closer look, I noticed the bicycles in my way, but not that curb. Plop (that was me), twist (that was my ankle). I righted myself and sat on the curb a few minutes knowing I’d done some bad damage. That ankle has taken similar assaults these past few years, and now I had to find my way back to the hotel. And, I had no idea where I was. 

I limped down one street expecting to see something familiar or people at the end, yet it was deserted. Beautiful, but deserted. I followed another street with the same hopes, again deserted. Turning the corner, I found a nice young Dutchman getting ready to take off on his bicycle, and I called out, “Can you tell me where Central Station is?” Everyone in the Netherlands speaks English, thank goodness. Our hotel was across the street.

He pointed to go straight, turn right and I’d be there in 10 minutes. 25 minutes later I was at the hotel. 30 minutes later I was sitting in the ER of Leiden’s University Hospital. It was 12:45 PM and learning I was given the code color blue and would be seen within two hours, even though we were the only ones in the ER, my husband played the diabetes card. Rarely done, but if it wasn’t hurting anyone else, why not?

“My wife has type 1 diabetes and has to eat, we can’t wait two hours.” That got me in to be seen in five minutes – something to remember. After four people looked at me, each shaking my hand and introducing themselves, each starting in Dutch before I told them I don’t speak Dutch, an Xray was taken and we learned I hadn’t broken any bones, but now I know a bad sprain is worse. They put a bandage around my ankle, gave us a handshake and a leaflet that listed crutch stores. 

At the crutch store I was given my first lesson and walked out under my own steam. Only minutes later to learn how exhausting these things are. They demand far more upper body strength than I have and by the end of the first day I resolved to keep our evening plans with friends the next three days doing my best to navigate in and out of the train stations because I thought quite consciously I don’t want to die with regrets. But it was no small feat, certainly not for my feet. 

I’ve been home a week and I’m still on crutches. I dragged my boot cast from a former injury out of the closet. I’m crutching, hobbling and trying most of all not to move as I didn’t give my ankle the rest it probably craved when I first hurt it.

A dear friend has come to be my legs, to assemble my meals, wash my dishes, drag my meter and insulin from room to room and turn my trail of lights off. 

I’ve seen, remarkably, that my blood sugar didn’t rise from this injury while I was still in Holland. Maybe because it took enormous effort to maneuver in and out of train stations and staircases, including the enormous marble staircase in the last bed and breakfast we stayed in. But now, trying to be still and give my ankle the rest it needs, my beautiful blood sugar numbers have gone AWOL. My rapid-acting insulin dose has doubled and I’m still trying to figure out a sufficient amount of Lantus.

All I can say is you really appreciate the mere act of walking across the living room or to the corner store when you can’t. And in the words of my father, “this too shall pass.” 

An oldie but goodie: Love and the Juvenile Diabetic

 

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I wrote ‘Love and the Juvenile Diabetic’ in 2004 three years into my marriage. It was a good marriage, only kidding. It’s probably even better now it that’s possible, as you grow with someone over time. 

Last week we went up to Boston where I visited a number of diabetes organizations and companies. A friend at one of those companies wrote to me after I visited. 

“After seeing you and Bou I just re-read ‘Love and the Juvenile Diabetic’–new meaning this time around for me, as more life has happened since I last read it in undergrad school. Thank you for writing it.”

Since we’re always at different stages in our lives, and things affect us differently depending upon where we are, if you’ve read this before you might enjoy it a second time. If not, you might enjoy it for the first time.

“Sugar Babies” film shows wrenching rise in childhood diabetes, and needs funding

Even after living with type 1 diabetes 40 years, tears sprung to my eyes watching the trailer of “Sugar Babies”, the rising epidemic of diabetes in children. Two and three year olds taking shots and pricking their fingers constantly like 4-year old Caidence above. Ten year olds with type 2 diabetes largely because we’re larger. 

Jenny Mackenzie, mother of a type 1 daughter, and award-winning filmmaker is trying to raise $30,000 to finish her eye-opening film on childhood diabetes. Whether you contribute any money or not, a dollar or ten or nothing, watch, you will be moved. You will remember when children live this way what it really is to be, and to have, a child with diabetes.

Isn’t it time that people really understood what it’s like to live with diabetes, and we make it known?

From Roche to the T1D Exchange, from happy to hopeful

 

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I just got back from a whirlwind of diabetes activities. First there was the 4th annual Roche social media summit. Above my fellow diabetes influencers, hairnets and all, touring the Roche manufacturing plant. 

Thirty or so of us diabetes bloggers were hosted to one and a half days at Roche’s HQ in Indianapolis, paid hotel and meals. This meeting drew some new diabetes influencer   s than past meetings.

This year’s meeting was also different than the previous two years. Roche shared with us their new products in development, the launch of their new small, backlit, no-coding, meter Nano, and we heard from two inspirational speakers–one who lost both his legs, Josh Bleill and, type 1 Steven Richert, who is using rock climbing as an analogy for, “We can do whatever we believe we can do!” We were all moved.  

Truth is, I had no time to write about the meeting and do it justice but many of my DOC (Diabetes Online Community) fellow bloggers did, so you’ll find a few of their reports linked above, and lots of posts by googling ‘Roche’s social media summit 2012.’ AlsoDavid Edelman captured the two day meeting with all its activities. 

The day after I returned from Roche I headed up to Boston to meet with some major players in the diabetes arena: I met with Patients Like Me.com, a health data sharing information site. Patients with any of 1,000 conditions can post their health reports, lab tests and all and learn how a treatment is working for someone “just like them.” 

I met with Agamatrix, in Salem, New Hampshire, as part of my investigation on the Huffington Post about meter accuracy.

I met with the T1D Exchange (type 1 diabetes) and I’m inspired by what I heard, more inspired than I’ve been in decades.

I also met with Dr. Michael Dansinger, who writes on WebMD, is a consultant to TV’s hit, The Biggest Loser, and wrote the Foreword to my upcoming book,Diabetes Do’s & How-To’s. Michael is a passionate man working, as only a handful of others are, on reversing type 2 diabetes. And, one night I dined at the 4th oldest restaurant in Boston with Bryce Sady and Marta Murcia, my colleagues from QuantiaMD. They saw the value of educated patients sharing their wisdom and experience with HCPs through a segment called “Ask the Patient” which I’m a part of helping providers better understand how to help their diabetes patients with healthy behavior changes. Such great food, such exciting ideas flying across the table. 

I also, almost by accident, met a woman doing research in bariatric surgery for type 2 diabetes, and got to visit MIT’s media lab. While surrounded by absolutely amazing potential new inventions, I loved the fork that will shake when there’s too much food on it, and the spoon that will collapse when you’ve eaten enough. 😉

Stay tuned for more information on all these visits. All these meetings and learning I will write more about here and on the Huffington Post, but in summary, I was happy seeing my colleagues at the Roche meeting and I am hopeful for all I saw and heard in Boston. 

For now, as you might imagine, it’s time to put some food in the fridge, unpack, and investigate all this further to make the best sense for you of what’s spinning now in my head. 

Talking with the International Diabetes Federation

 

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This month I had the pleasure of being interviewed by the International Diabetes Federation (IDF). IDF is a global advocacy organization representing more than 200 diabetes organizations around the world.

IDF’s mission is to increase public awareness of diabetes and encourage prevention and better care for people with diabetes. You may notice this November some buildings will be lit in blue. Blue is the global color for diabetes and this blue circle above is the global symbol. It was created by the IDF.

Every two years IDF holds a conference, called the World Congress, where scientists, researchers, medical professionals, industry people and representatives from around the world come together to learn and share. 

Last year it was in Dubai, where diabetes is rampant – 1 in 4 have diabetes – and I had the pleasure of being invited as media from the Huffington Post. Now that was a trip – in every sense of the word!  

I also had the distinct pleasure of getting to know several of the hard-working folk from IDF and hope to join them again December 2013 when the World Congress moves to Melbourne, Australia.

But for now, have a read. 7 brilliant answers to 7 interesting questions.

The circle of diabetes, we are seen and unseen

 

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I took my weekly walk to Trader Joe this morning and as life sometimes serves up unexpected connections I found the woman behind the cash register has a son with type 1 diabetes. She told me reading the logo on the jacket I was wearing. 

He got it at three and is now fifteen. I felt our immediate bond as she packed my greek yogurt both smiling and looking apprehensive. She told me his A1C,  and her concerns. “How will he ever be able to take care of himself? I worry,” she said. I was surprised, why wouldn’t he be able to take care of himself? We find our way.

As I swiped my credit card she told me she’s heard there should be an artificial pancreas in his lifetime and this would really help. I said with some confidence that I thought probably within ten years. Then she said, “but still I don’t know how if he’ll be able to take care of himself.” As the eggs went into my bag, I heard her say “autism.” I had missed it earlier. Yes, her son has type 1 diabetes and autism. My heart heaved for a moment.

There are many times I feel invisible with this disease. No one notices all the work I put in behind the scenes to stay well. Certainly no one in Trader Joe knew I had diabetes, including the woman now ringing up my sale, until my jacket started a conversation.

Before lifting my bag of groceries, I took her hands in mine. She said, “I hope it will be OK.” I thought what can I say? I said, “I hope so too” and over a shared smile, turned and walked back into my life.

I relayed this story to my husband over lunch. I said, she must feel the same as me, unseen. How many people know her son has type 1 diabetes and autism? How many people know how hard she works to help him and her worries for his future? I wonder do her co-workers know? I can’t imagine. 

In telling my husband this story he said, “Write it.” And so I have.