Pushing out a video and what it caught

Like any performer, writers – even bloggers – crave knowing someone’s reading what they’re writing, and benefiting. And we’re always wondering. Several months ago a very well known blogger said to me, “Do you think people are really reading what I’m writing?”

So it’s sweet music when you actually hear from people whether they post a comment or write you directly. Don’t underestimate your effect. 

It’s also great when you know what you’re writing made a difference. 

Manny Hernandez, who spearheaded the big blue test video I helped work on sent this email he received from a viewer yesterday to the team. 

“Last week, I shared the Big Blue Video on Facebook.  One of my brothers reposted the link and shared it as well.  Last night, that brother lay awake in the middle of the night after changing his 5 year olds wet sheets (not unusual to have problems, but thought they finally had the bedwetting under control) 

As he lay there, his mind was working.  The 5 year old has been tired because of the adjustment to all day kindergarten.  Growing too fast and his bladder can’t keep up.  Has been buying extra juice at school, he must not like the food and is hungry.   DING – The pieces all fell into place.  Diabetes.  

Tonight, my brother is in the hospital with a newly diagnosed Type 1 5 year old.  No ketones, bs 230.  So not “full blown” in the words of the hospital staff.  What made my brother’s brain process the information and link on to the signs of diabetes right away?  We can’t know for sure, but I really feel like the video being out there had Diabetes in the front of his mind.  Being able to catch the Diabetes before a ketoacidosis episode – PRICELESS.  

Please share with the people responsible for the awareness caused by the video!  And Thanks!”

Now, for me, that’s priceless. 

Turning a page at 11:05 PM tonight

Keep the connection going

First, I have to thank everyone for their birthday wishes on my Facebook page today. Quite a delight to see first thing in the morning.

Second, I have to tell you that many people have noticed my infusion site tattoo as I’ve wandered around the big apple this week, giving me the opportunity to enlighten a few folks as to insulin pumping. You should have seen their faces!

Third, a friend once told me that in New Zealand, on your birthday you do nice things for others

So, my first task is to pass along my friend, Manny Hernandez’s (founder of the Diabetes Hands Foundation, tudiabetes and estudiabetes) request for a small donation to keep these amazing social media sites, and the outreach projects Diabetes Hands Foundation does all year, thriving. The work of DHF keeps thousands of us connected and generates continual awareness of diabetes, both inside the community and out. 

With your donation you may receive a copy of the Foundation’s poetry book,No Sugar Added, but you’ll definitely get that lovely feeling of helping others. After I make my donation, I’m going back into the city to return that birthday belt that looked so darn good on the rack and so darn bad once I got it home. Drat!

Happy day everyone.


“T” is for thank you Dex4

UnknownUse positive emotions to better manage diabetes

Every summer in Orlando, Florida, Children With Diabetes, an online community for families with diabetes, runs an amazing conference for families called “Friends for Life.” It’s just winding up today.

Children with diabetes come and play and make new friends (for life). Parents attend lectures to learn more about: managing diabetes, helping their children manage their diabetes, managing the emotions of having a child with diabetes and to bond with other families. There’s also access to a mini-vacation with Minnie and Mickie over at Disneyworld.

Every year since 2007 I’ve attended at least one diabetes conference. Friends for Life was the first diabetes conference I ever attended. It felt instinctive–at 54 I still was, and always will be, a child with diabetes. 

Since 2007, I have wanted to make my book, “The ABC’s Of Loving Yourself With Diabetes” available to families at Friends for Life. This year,Dex4 (manufacturer of glucose products) gave me the opportunity to donate 150 books and distribute them in their welcome gift bags that they handed out to new families attending the conference. 

I sincerely thank Dex4. I also hope as families leave the conference this year, buoyed with new learning, memories and friendships, that when they need a booster shot of strength again, they’ll dip into my book and find their way there. When you live with diabetes from a place of courage, confidence, forgiveness, patience, joy and pride, as my book guides you to, this ride utterly changes for the better. 

Dex4 is working, through both education and products, to help one always be prepared to correct a low blood sugar. I work with Dex4 upon occasion as a patient-expert advisor.

My heartfelt letter to Oprah

Unknown

Because there were so many comments made on so many blogs in the diabetes community in reaction to Oprah’s show last week, “Diabetes: America’s Silent Killer,” while my intent was not to critique Oprah’s show in my first blog post for The Huffington Post, I felt a responsibility to do so. And so I have. 

My second post for HuffPost, An Open Letter To Oprah Winfrey and Gayle King, was accepted within 2 hours and is in the Entertainment Section. I sure do hope someone shows it to Oprah and Gayle.

If you’d like to know when I post on The Huffington Post, just sign up as a fan or get the RSS feed. Meanwhile, thank you for the encouragement, warmth and support you have given me to reach this vantage point just by stopping by.

Voices around the diabetes community

Oprah Does Diabetes, Kerri Sparling

Oprah Does Diabetes, But the Diagnosis? Fair to Poor, Hope Warshaw

Dear Oprah & Dr. Oz – The Diabetes Show – Major FAIL, Kelly Kunik

More than 300,000 people in Haiti with diabetes in need

The recent earthquake in Haiti reminds us that when danger strikes, people with diabetes are doubly hit – not being able to do without their medicine and testing supplies. 

Insulin for Life is sending insulin, strips, meters, lancets, pens, pen needles and syringes to Haiti and can use your donation. Their operation will need funds to be able to continue sending supplies. You’ll see a ‘Donate’ button on the left bar of their web site in orange. 

You can also check out Manny Hernandez’ post about his exchange with Insulin for Life’s president Ron Raab.

Give to a good cause, or two

 

Think about making a year-end tax-deductible gift

Donation to JDRF

I just sent a check for $350 to theJuvenile Diabetes Research Foundation (JDRF). This is part of my commitment – to donate part of the proceeds from the sale of my book, “The ABCs of Loving Yourself with Diabetes,” to an organization making life better for those with diabetes. If you purchased a book this year this donation was possible because of you.

Last year your purchase funded asimilar donation to Diabetes Research Institute, another premier institute searching for a cure for diabetes. 

Every year I’ll make a donation to a diabetes organization from the sale of “The ABCs of Loving Yourself with Diabetes.” So buy a book and do yourself and others a good deed.

TuDiabetes

Like JDRF, started by a few families with type 1 kids wanting to raise awareness, TuDiabetes, one, if notthe world’s largest diabetes social networking site, is making a similarly dramatic difference in the life of people with diabetes. TuDiabetes, the dream and vision of Manny Hernandez, is a place where almost 10,000 PWDs across the planet come together to share their stories, information, hopes, fears and  inspire one another. Manny’s mission is that no one with diabetes feel alone. 

Manny’s Diabetes Hands Foundation, from which TuDiabetes was born, is constantly active raising diabetes awareness through projects they both initiate and support. Think about lending your support as you watch Manny’s video. From every dollar you donate TuDiabetes and diabetes awareness grows. I’ve had the pleasure to get to know Manny a bit this year and I can tell you no one has a truer heart.

Sometimes I think it’s easy for all of us in this diabetes-blogging world to forget that we actually affect something or someone out there, speaking and listening virtually as we do. But as I look back on my year I know that we do. 

I’ve written enough posts to share my personal ups and downs with diabetes and get it out of my system, for the moment that is. I’ve written several articles for various diabetes magazines and been advisor for a few diabetes organizations. I’ve seen my second book, “50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It” hit bookstores and receive praise from reviewers and thumbs up from readers. I’ve been invited to Roche pharmaceuticals’ first diabetes bloggers social summit. I gave away 2,000 of my books at the International Diabetes Federation conference that are now in libraries, clinics and practitioners’ and patients’ hands around the world. I’ve traveled across the states educating and inspiring fellow patients. I’ve flown to England to become a more skilled health coach and been taught by two Harvard professors to enhance my skills even further. One of my aims next year is to be part of the solution helping patients improve their self-management.  

Of course this all came at a cost: I traveled far and wide, met wonderful new people, made some incredible new friends and made my husband very proud. Here’s to a great new year for all of us.

Sisterhood of the Traveling Computer Bag

L1010663

“Sisterhood of the Traveling Pants” is a sweet friendship tale of four teenage girls, lifelong friends, who will be spending their first summer apart. On the eve of their separation, they find a pair of jeans that magically fits all of them perfectly, even though they’re all different shapes and sizes. They decide they will share the pants over the summer as a way of staying together while they are apart. 

 

I have a similar story only it involves a computer bag, someone I’d never met before and less than sweet emotions.

 

I spied this burgundy computer bag on the second day of theInternational Diabetes Federationconference I attended this October in Montreal. Scads of people (true different sizes and shapes all) were walking around the lecture rooms and exhibition halls with this bag on their different-sized shoulders. Magically, it fit them all and I knew it would fit my shoulders as well. And I wanted one, badly.

 

Frankly, I don’t lug around my computer. And I didn’t want this bag because I thought it was such an amazing bag, although I do love burgundy and did get married in a gorgeous cut velvet burgundy dress… but that’s another story.

 

No, this bag had an emotional tug on me from the moment I saw it. Having this bag over my shoulder would proclaim to the world just as it says, “I am traveling to change diabetes.” It would prove membership in the club of those who work in diabetes, and be validation that I am making a difference.  

 

This bag was my visible, tangible confirmation that these posts and my books and talking to fellow patients contributes something. With no congenial office to go to, no lunches with colleagues, drinks after work, boring meetings where everyone rolls their eyes in solidarity at the boss’s obtuseness, no annual Christmas party, this bag symbolized to me below my conscious radar, acknowledgement for what I do. It was a purely immature and selfish urge to want, and to get, this bag. I also noticed that the more I saw the bag around the conference, the more my amygdala (fear-based center of the brain) was controlling me beyond all reason.

 

I asked at the Novo Nordisk booth if I could get a bag and was told they were only given to people who’d attended their seminar the first day of the conference. Disappointment clouded every other booth from my view. 

 

Miraculously, the second day of the conference I attended a small party given by one of the vendors I knew whereupon one of the guests said to me, “I know Pia at the Novo booth, give her my name and tell her I said if she has any bags left to give you one. Pia’s great, if it can happen, she’ll make it happen.” Excitement flushed my cheeks, or was it the wine?

 

The next day I found Pia and she said the last day of the conference they would give out their remaining bags. She wrote my name in her little red book adding each of the beautifully scribed letters to the list of the select few (trust me this is as close to VIP as I get) who would be given this treasure. “Come back anytime after 10 AM on Thursday,” Pia said, “to get your bag.”

 

I told my husband, “You see persistence pays off!” all puffed up with how pleased I was with myself. Thursday morning at 10:30, my hands hanging awkwardly by my side feeling their emptiness soon to be filled, I walked over to the Novo booth. I didn’t see Pia so I asked the woman there, “Hi, my name is in the book to get one of your burgundy bags.” “I’m sorry,” she said, “they’re all gone.” 

 

“They’re all gone?” I said dumbfounded. How is this possible? My name is in the book. I’m here as I was told to be. “Are you sure?” I almost whispered, “My name’s in the book.” “I’m sorry, they’re all gone,” she said and turned away.

 

I could barely keep the disappointment out of my voice when someone I’d befriended at the conference addressed me minutes afterward. (Yes, I know you’re saying to yourself my goodness all this fuss over a bag?! But you have to imagine this was the world diabetes conference, 12,000 people, and every time I turned crowds of them were parading by in my burgundy bag.)

 

My husband didn’t know what to say to make me feel better. Then by accident at 2:09 PM, not that I remember, I saw Pia. “Hi, I came by earlier but was told there are no bags left?” “Yes, I’m sorry,” she said, “they started handing them out early this morning by mistake and they all went in no time.” After a long pause she said, “I still have one left in my office in Copenhagen. If you give me your address I’ll send it to you when I get back.” 

 

Without a moment’s hesitation I gave her my card and thanked her, stupidly, I’m sure I was rambling. Only as I walked away did I think the chances of her really sending me a bag from Copenhagen were slim. After all, it would be so easy to lose my card on the way home. She’d be swamped with work when she returned and this would go forgotten. Someone would have already taken that last bag from her office, or she would look at it upon her return and think it’s too much effort.

 

But still, I waited. Hope is its own salve. I watched the mail and waited. I thought if it comes it will be in three weeks time. Certainly Pia needs some time to catch up on her work after attending this conference and it is an international package. After three weeks and no bag I kept moving my timeline out. Each day I approached my front door hesitantly, expectantly, hoping to see a package but I knew after four weeks I would never see that bag again. 

 

Just when I truly forgot about it I came back from my morning walk and my husband said, “You got a package and pointed to the FedEx box on the floor.” I looked at it and said as I sat down at my computer, “I’ll open it later.” My husband, having looked at the post mark knew what lay in the box and said, “Are you sure you don’t want to open this? It’s going to make you very happy.” Not thinking about the bag at all, it took two more of his attempts for me to get up and look at the box whereupon I saw that it was from Copenhagen. 

 

Inside was the burgundy bag and a note from Pia hoping I would enjoy the bag. Little did she know. I wrote Pia a thank you letter and sent her my books in return, yet I’m sure she still doesn’t know how much this bag and the fact that she took the time and trouble to send it to me means. The fact that there are still people in this world as good as their word. The fact that what seems like a small act of kindness can be richly rewarding to another. When I give presentations now I put my materials in this bag and on its first flight out at JFK waiting to board a plane to Cleveland, the woman sitting next to me seeing my bag smiled and asked me about what I do. 

 

Yes, it’s crazy, but I proudly sport this bag as my declaration to the world that this is the work I do. That I am a member of this club. Inwardly, it’s a cue to myself that what I do matters and that I belong right where I am.

 

On second thought maybe this tale bears less resemblance to “Sisterhood of the Traveling Pants” and more to the film, “The Red Violin,” where a perfect violin is admired for its red color and passes through many lives playing a significant role. Maybe my bag’s adventures from Copenhagen to Brooklyn to Cleveland, where it has yet to travel, stories it will yet engender and lives it will yet touch, is the true gift and meaning of this bag.  

Should diabetes be a factor in hiring? Absolutely.

Nominee for Supreme Court Justice, Sonia SotomayorUnknown

Most people with diabetes are afraid to disclose that news when it comes to getting hired.  Many employers personally discriminate against people with diabetes and many jobs restrict hiring people who use insulin. However I think, unless the position is one directly responsible for people’s safety, that any smart employer should be discriminating — for us, just as President Obama did today.

 

Today the President announced his supreme court judge pick, Sonia Sotomayor. I saw the announcement as ABC broke into its regularly scheduled morning news broadcast. I listened as they listed why she is a historic pick: The first Hispanic and the third woman — yet, no mention that she has lived with type 1 diabetes since the age of eight. Now, that’s historic. The first type 1 diabetic nominated to the Supreme Court bench.

 

I didn’t know at first if I was pleased that there was no mention of her diabetes or not. After all, I wouldn’t want anyone thinking she couldn’t do the job. But, really, living with type 1 diabetes, should be seen as a huge asset. Judge Sotomayor, along with growing up in a housing project in the South Bronx with only her mom from the age of nine, managed to graduate top of her class at Princeton, get her Juris Doctor from Yale Law School and become editor of the Yale Law Journal, be nominated by President George H. Bush to a seat on the U. S. District Court in NY, be the youngest judge and the first Hispanic federal judge in New York State, and manage a chronic illness for more than four decades.

 

President Obama said Sotomayor has, “Intellectual firepower and the common touch.” Due to managing diabetes, she also has: Mastery over the constant acquisition and implementation of new information, extraordinary time-sensitive management skills, in-tact emotional balance and resiliency, 24/7 decision-making skills no matter how tired she is, and the ability, in the face of an uncertain future, to remain hopeful and empathetic.  These are the qualities most type 1s I know have developed living with diabetes.

 

So, actually, I’m thinking this makes us more, not less, for a potential employer. More capable, more flexible, more determined, more responsible, more committed, more courageous, more remarkable. Simply, more. 

CVS Caremark no longer ensures a cold pack with insulin

How sneaky is this? I recently received a letter from my former direct mail pharmacy, CVS Caremark-I seem to still be in their database. Thankfully, I am no longer in their plan.

The letter lets me know that they’re making some changes in how they pack and ship insulin vials. I quote from their letter:

“Our new process will check the National Weather Service forecast for your area for the time period that we expect your order to be delivered. Based on the temperature range during that time, we will determine the best shipping method to use to protect your insulin. The chart below explains the different shipping methods based on the weather forecast.” Their chart indicates: 

86 degrees or higher gets next day delivery with a cold gel pack

78 degrees to 85 degrees, gets second day delivery with a cold gel pack

32 to 78 degrees gets regular delivery without a cold gel pack

Now, what if we have a temperature snap, hot or cold, which happens frequently today? More critical, and likely, what if your insulin sits in a postal place overnight in a hot room with no air conditioning? Or a cold room and it freezes? While Caremark is checking the weather, are they checking the storage areas where insulin will sit before it is delivered? Hmmmm….no mention of that, I think not.

The best part of the letter for me was this: “Even though insulin manufacturers say that it is okay to store insulin for limited time periods at temperatures up to 85 degrees, CVS Caremark is taking extra care to make sure that your insulin is protected by shipping insulin with a cold gel pack if the temperature in your area is forecasted to be 78 degrees or higher.”

In other words, aren’t we great?  CVS Caremark is saying. Here we’re going above and beyond what’s called for to protect your insulin. Guess what? Before I received this letter, my insulin ALWAYS arrived with a cold gel pack regardless of the weather. 

I get it. The economy is contracting and here’s another way to save bucks. But when companies begin fooling around with our medicine it’s unconscienable.  

It wouldn’t hurt to send Caremark a letter, especially if you received this one, letting them know how much you do not appreciate what they are trying to pass off as extra care. Now I think lack of “care” is what  “marks” Caremark.