Learning and bonding
I’ve already blown it. I put the “Vacation Responder” setting on my outgoing emails last night and now everyone in my address book has gotten a message! Forgive me.
That said, this spot will go quiet for the next two weeks.
Today I leave for Raleigh, North Carolina, weather permitting, to attend, and be the Saturday evening dinner speaker, at Diabetes Sisters’ “Weekend for Women”. If you haven’t heard about it, check it out for next year. It’s just for us girls: 2 days of bonding, lectures geared toward diabetes and women, activities, great speakers and general diabetes care information. This year’s theme is “Celebrating our Strengths” and I’m delighted to be a part of it.
Then I’m off to Singapore where I’ll be addressing the endocrinology staff of Singapore University Hospital and medical students. Of course, I’m salivating over the hot stone massage I hope my friend is booking. I had one there the last time I was in Singapore and I practically melted off the table. Of course that was after a ten-hour flight from Sydney. So, it promises to be doubly good after a 20-hour flight from NYC!
From Singapore I’m dropping down to Tokyo to visit friends. I lived there from 1986-1992 and I am always made to feel like an honorary guest when I return. And yes, for everyone who’s asked am I really going after all the destruction and earthquakes, I am. As I wrote on the Huffington Post, Tokyo is like a second home. Plus I have always figured when your number’s up, it’s up, and you can be anywhere.
I’d like to say I know exactly how to handle my insulin and blood sugar on these travels, but I'd like to say that; nothing could be further from the truth. I have no idea given the amount of time zones I’ll be crossing and jet lag and different foods I’ll be eating. And, I’ve never found any really good, clear information how to manage insulin while traveling.
So I’ll use my usual method: test an annoying amount of times and keep adjusting till I seem to be on track.
So sayonara, be well and see you in a couple of weeks.
I never like to use the word "perfect" when it comes to diabetes. Far less when it comes to being a "perfect" diabetic, although so many of us, including this recovering "perfectionist," share this impossible desire.
So when I first saw this article, Seeking the Perfect Diabetic Day," my face immediately turned into Munch's painting "The Scream" and I was completely ready to condemn whatever the article said.
Then I read the article and realized "the perfect diabetic day" is a measurement for hospital administrators to quickly see how well their institution is managing the glycemic control of patients.
Seemingly a step in the right direction as we know hospitals tend to be monoliths with a hundred heads, silos that don't cross, and filled with overworked providers and staff who need you to write on your body which arm should be operated on. And since practical wisdom says, "no one should be in a hospital without an advocate," I'll take all the help we can get.
According to Kalman Holdy, MD of Sharp Memorial Hospital in San Diego, the measure simply looks at the proportion of days during which every blood glucose measurement for every diabetic patient is within the recommended range for hospitalized patients -- 70 to 180 mg/dL.
In an informal poll of 51 nurses, doctors, and pharmacists, the vast majority (98%) said they preferred using perfect diabetic days over average blood glucose values as a performance metric. Personally, I'm all for doing what providers prefer provided it's not life-threatening to me.
The benefit of using this measure Holdy says is that each hospital unit can improve their glycemic control. Tracking their performance, the percentage of perfect diabetic days increased overall from 33% in 2002 to 43.8% in 2010.
That's good, however this next statement seems irresponsible. In terms of a bottom threshold, says Holdy, values lower than 35% should require that some action is taken to improve the quality of institutional glycemic management. Well, that's kind of scary - 36% glycemic control is considered good enough not to do anything?
I applaud any institution trying to make improvements and when I looked at Sharps a little more closely they do seem to stand out from the pack. They're making lots of improvements to improve care: lowering noise to increase calm and redesigning the flow of the hospital for greater efficiencies. Not unlike an amazing hospital in Singapore I visited a few years ago.
That said, I do know one other way that better glycemic control can happen in the hospital setting. Let educated patients control their own blood sugar, provided they're conscious and know their name. I've heard way too many stories of one's insulin and syringes being taken away by a nurse who knows diddly about blood sugar management.
A wee bit of wisdom
Katie Couric was on the morning news Today show last week and said something that stuck in my head. "Some days you're the pigeon and some days you're the statue." It's a quote from a book by news woman Linda Ellerbee.
Couric raised it talking about how when she first moved from the anchor desk of the ever-popular Today Show to host the CBS Evening news, she seemed to have immediately morphed from a pigeon into a statue: Every critic (shit on) found fault with her.
It's such a simple, freeing statement, "some days you're the pigeon and some days you're the statue." It reminds me that there will be days I'll be doing great and other days, for whatever reason, someone may want to find fault. So be it. What's true is, when other's find fault it usually has nothing to do with you - it's their stuff. Hold onto your center.
It's comforting I think to be reminded that's just how life is - for all of us. And it's a great visual to remind yourself of when things seem dark. So, when you are the statue, just hold tight. One day you will look around and realize you, my friend, are once again a mighty pigeon.
The kind of info you'll find
Diabetes, a new platform
If you don't know them, you should, PatientsLikeMe. Unlike most social media sites, this one isn't so much about "chatting" with patients like you as much as learning the real-life health experiences of others by seeing shared treatment plans, meds and symptoms.
Last week PatientsLikeMe expanded its platform and, while diabetes wasn't previously represented, now anyone with any condition can join. The site is free and 5 years in the social media space, has almost 100,000 members and represents 500 conditions.
What's the benefit to joining? In addition to feeling less alone, it's seeing how others are treating your same condition, how they're doing and learning what does and does not work for others.
PatientsLikeMe was founded by three MIT engineers, brothers Benjamin and James Heywood and friend Jeff Cole after Stephen Heywood, brother and friend, was diagnosed with ALS (Lou Gehrig's disease) at the age of 29. As the founders describe it, we believe we have a health data-sharing platform that can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.
Surprisingly, or maybe not so, its members, who are very open in what they post on the site, revealed in a poll conducted by PatientsLikeMe that 29% have withheld certain health information from their doctor for fear of being lectured or made to feel bad. 47% have chosen not to share certain health information with their employer for fear of losing their job or being passed over for promotion, and 14% have withheld information from insurance companies for fear of not having a procedure covered.
It is the hope of its founders that PatientsLikeMe will help patients help themselves by sharing their real-world health experiences in a world where patients are obviously afraid to share certain things with their health care providers.
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.
I'm reading a book I love - After the Diagnosis written by kidney specialist, MD Julian Seifter.
Doctor Seifter has diabetes himself, and so shares his own actions, or rather inactions, (he's a notoriously bad patient the first several years) but it's really in the background of this book.
The book's focus is the stories of his patients. Since all his patients live with kidney disease and generally face the unpleasant, yet only life-saving measure of dialysis, they each face life-altering decisions and are in different stages of their conditions. Seifter relates their stories, their journeys and how they prevail.
It is a fascinating look at the human spirit, and for me made all the more interesting told by a physician whose first orientation is clinical. Yet, he is deeply human and not afraid to share that side of himself with his patients; this often becomes the key for his patients to take the next step they might not otherwise.
Here is a short bit from the book
Dr. Seifter meets Lyla, a young West Indian woman, who has end stage renal disease, diabetes and AIDs. Lyla went missing after her first dialysis appointment where she was prepped for future treatment. When Seifter next sees her he asks how her blood sugars are. She doesn’t know. They take out her meter and he helps her test, which she doesn’t know how to do. 183, “That’s not so bad,” he says. And then he realizes he has not put on gloves and this is probably the first time in years Lyla has had blood taken without someone wearing gloves. Seifter thinks of referring her to the dietitian, but does not when he thinks how culturally-insensitive she is. She will only hand Lyla the same standard diet she hands everyone. Instead he asks Lyla what she eats. When she tells him rice, beans and potato chips he asks her to match her carbohydrates with protein and make her portions a little smaller. He asks next how she’s feeling about dialysis, “I’ll try it,” she says.
Connecting with the patient, not the illness, is one of a physician's greatest tool. Yet, it is not what's emphasized in medical school In fact, I recently spoke with a physician who told me in a way humanity is trained out of medical students.
This book is written for patients and physicians alike. There are the stories and interwoven many of Dr. Seifter's insights. For instance Seifter encourages doctors to help their patients be more imaginative and playful when considering treatment options. Doctors, he says, are instrumental in giving patients confidence, even permission, to keep going. If a doctor, for instance, doesn’t clearly encourage treatment a patient may hear, “Don’t do it!”
If this is your cup of tea, as it is mine, you will take away a great deal from After the Diagnosis.
I first became acquainted with cartoonist, Haidee Merritt, on Amy Tenderich's blog, DiabetesMine.
Haidee is the new Sunday cartoonist in residence over there. And her weekend funnies are fantastic!
There's the absolute "getting it" as a girl who got type 1 diabetes at the tender age of two. And then there's the living with it for the past 38 years.
Haidee's passion led to her book - One lump or two?. What began as a few doodles she says represents a lifetime of personal struggles and experiences. And they sit now here on my coffee table offering me a momentary release from the tedium of diabetes.
Haidee said squirreling herself away to draw helps her temper her feelings about diabetes and the cartoons are a way for her to confront and accept things that are sometimes hard, and communicate with others.
I know reading her work is a way for me to gain a reward belonging to this exclusive club - diabetes - I wouldn't have picked for myself voluntarily.
Haidee writes in her bio, along with her artistic credentials, that her goal is to become a Celebrated Diabetic Personality, hmmmm...CDP, a new canon among the CDEs and NPs and LDs and MDs. Also, she says she has an opinion on just about everything, so just ask. Should you care to, you can contact Haidee at her website and also see more of the artist's work.
I told Haidee I'd rationed myself to one cartoon with each meal because each gives me such a lift I didn't want to run out too quickly. She assured me she has enough material for book #2 and all she needs is the funding. So I'm personally appealing to anyone who appreciates the healing power of laughter and has a bit of a wad to spare to get in touch with this very talented and rising CDP.