In my last post I scored my new endocrinologist according to my own devised criteria. The tally was: 6.75 out of 10. Today, I am raising that score as new information has arrived.
This morning endo called me at home with my test results from the labs taken the day of my visit last week. First, I'm impressed by the call. My previous endo never called unless there was a problem. Second, I'm impressed endo called on Labor Day weekend. OK, maybe endo is working, but still it's nice. And I'm a sucker for nice.
Third, endo gave me my results in plain English not medical gobeldigook and while endo expressed concern about one test result endo took a prudent attitude and recommended we revisit this next time we take this test. Efficient, endo also sounded a tad warmer than our first/last meeting. Also, endo is faxing my A1c result to the organization I requested last week. At first I was confused who endo was faxing my test result to because I had forgotten! So endo is on the ball. All tolled, I'm raising endo's score to a full 7.
You might think I should raise it to 8, but 8's pretty special in my book out of only 10. Besides, I'm fairly confident endo may still go up on my score card as we continue to work together and I'm looking forward to see what I discover during more visits over the next few months.
I went to a new endocrinologist yesterday. If you read this blog you know that when I couldn’t get my last test results from my previous endo (after a high potassium level that turned out to be a mistake when I retook the test) that was the end of the line for we two.
Since one of my great commitments is to help health care providers better understand the patient experience so that they can partner with and empower patients to perform better self-care, I had my antennae up during this visit.
I will say overall my new endo (no gender to preserve anonymity) came up both exemplary, and lacking in something I particularly care about and feel is invaluable. Early into the intake endo determined we should lower my frequency of lows, as the greater the variance between highs and lows the greater irritation to the blood vessels. I was instructed to take less Lantus and likely up my Apidra: The overall goal is to have less up and downs. So I'm to test as I do now and send the results to endo on a weekly basis. Frankly no endo has ever asked me to do this, so kudos here. Endo also listened and respected my firm stance when I said I have no intention of letting my A1c get above 6. Endo said it may during this transition, but if so, then we'll get it down again. I liked that I felt heard and I know that made me feel greater enthusiasm to make the transition.
Where endo faltered in my book was in creating relationship with me as a person/patient. The focus was almost entirely clinical, scientific and task-oriented; specifically what I needed to do and how we were going to do it.
Yet, there were so many opportunities when endo could have given me a pat on the back, a sense of partnership, encouragement to continue all the good work I'm doing and commendation for my current results. This would give me even more juice to keep doing well, and I'm already highly motivated --imagine your average patient.
Here were a few missed opportunities:
1. I told endo I intend to be one of those people who gets a medal for 50 years of living successfully with diabetes. Endo made no response: My words just hovered over the desk between us. I felt foolish and unheard.
2. I told endo I don’t want my A1c to go above 6 because the first dozen years my blood sugar was consistently around 200 not having a meter and being on pills for five years (misdiagnosed as a type 2) and so I have some complications. But now that my A1c has been in the 5's over the past few years due to my diligent diet and daily excericse, endo could have given me a "Good work. You go girl!" But nothing came.
3. When I gave endo a sheet on which to record my A1c result and send to the organization for which I do peer-mentoring work, endo took the sheet, glanced at it, said "I'll send it" and put the sheet in endo's in-box. Not a word. Not a, "How nice (great, wonderful, amazing, selfless, well one can dream) you do this work."
I think it’s imperative when treating diabetes, a chonic illness that relies on behavior change, for health care providers to also be sources of support as well as guidance -- primary engines of unleashing patients' motivation. Wouldn't it make a difference to you to come out of your doctor’s office having been told you're doing great, or if not, that you'll get there? Feeling validated for all the hard work you do? Feeling relieved knowing you have a partner across the desk who sees you? I know these things make a difference: They impact our attitude, resourcefulness and commitment.
Unfortunately, I am not entirely surprised how our session went. Medical training emphasizes illness not patients and does not offer skills training in coaching, sensitivity, getting the context of a patient's life or deeply listening to patients. Discussing this with a friend who's a diabetes educator she confirmed this citing the "human-centered" approach of most nurses and the "clinical-centered" approach of most physicians.
As I left the building, I also thought back to a piece of information I received at the end of the American Association of Diabetes Educators conference the beginning of this month. I had my book, "The ABC of Loving Yourself with Diabetes" in their bookstore. Last year the book flew off the shelves and not one remained. This year not one sold. The bookstore manager told me this:
"It’s the economy, less discretionary personal income and cuts in reimbursing purchases. So this year the bulk of the bookstore purchases were really heavy on clinical and accrediting DSME/T programs. None of the teaching tools that usually sell out sold as well this year as in the past two years and other titles comparable to your ABCs did not sell well/at all either."
So here's the conundrum: We need patients to change their behavior to better manage diabetes. Yet at the annual conference for diabetes educators what got reimbursed was clinical-related. Why is it so hard to see that without the tools that help motivate, encourage and support patients, behaviors will not change? Further, and studies document this, A1cs will not and are not going down and complications continue that can be avoided.
The score card for my new endo:
Wait time: 30 minutes
Time spent in visit: 1 hour
Manner: Pleasant and respectful
My Questions: Listened to and answered
Relationship: Not fostered. I was not asked: What are your goals?
What's important to you? What are you successful at
doing? What’s hard for you?
Close: Clinical. I was told to fax my blood sugar numbers every
week yet not told if I had any concerns, worries or
questions while changing my regimen to call or email the
doctor or office.
Score: 6.75 out of 10.
Pros - Thorough, respectful, spends time.
Cons - Almost exclusively disease-based, lacking in relationship-based.
It's a proven principle, when you focus on what you want there's a greater likelihood that it will happen. It's the same principle as "thoughts held in mind produce their kind" and "like attracts like." Hold onto something energetically in your mind and your attitude and behaviors will fall in line behind it. Poof! What you will see in your life will follow your thoughts.
Unfortunately, most of us focus on what we don't want. It's a sort of safeguard from failing or maybe a holdover from what you were programmed to believe about yourself in childhood. But the principle remains the same, like attracts like. If you focus on what you don't want (most of us do so unconsciously, yet vigorously), it will tend to show up in your life. Then you say, "See, I never succeed, the deck is stacked against me" Or, "Why bother, I never get what I want." You reinforce that you were right about your wrongly held intention.
With diabetes you can either focus on what you don't want like complications: blindness, kidney disease, heart attack, amputation and a shorter lifespan or you can focus on what you do want: a healthy weight, feeling vigorous, showing up as the healthiest person in your doctor's office; your actions in both cases will be in alignment with what you focus on.
So this morning I heard in a segment of Good Morning America with Dr. Oz, noted heart surgeon and health guru, on Keys to Long Life a new study came out that shows these keys can reduce chronic illness by 80%, add seven years of life and cut our health care costs in half.
But what intrigued me was what Diane Sawyer quoted as the new mantra, "Eat what you need to eat first instead of worrying about what you don't eat. Hmmm...focus on what you want not what you don't want. So shop, cook and savor the flavor of the recommended daily 7 servings of whole grains, 4 servings of fruit, 5 servings of veggies, 2 servings of lean meat and a handful of nuts and let go of the worrisome thoughts around what you're trying to avoid. Every time you go there you take a step off the road to what you want.
One of the most surprising elements in the book, "How Doctors Think" by Jerome Groopman, M.D. is right at the start when Groopman says most doctors interrupt their patients within the first 18 seconds.
A few days ago I went to New Jersey to present diabetes materials at a minor league baseball stadium that was also featuring a small health fair. Funny to see our little table against a backdrop of every unhealthy fast food available, but let's not go there.
While I talked with a number of people I remember one particular woman who stopped by the table. She was hesitant at first, tentatively looking over what was on the table. Her hesitation and Pacific Islander look immediately made me think she probably wasn't that educated about diabetes. Yet when I began to ask her about her blood sugar and A1c, wow, she knew her stuff. She told me about her 6.4% A1c and how she want's to get it a little lower, she told me what she eats and where she can do better and she told me about her last conversation with her doctor, turning her shy smile downward. Hearing her A1c, without thinking I stuck out my arm and shook her hand saying, "Congratulations! You're doing a wonderful job!" She grinned, she glowed, her smile lifted and spread from ear to ear going right up into her eyes. "Keep up the good work!" I said as she walked away waving and smiling, smiling and waving and thanking me.
Right before my eyes I saw the affect of congratulating a patient on her hard work. Something I fear not nearly enough doctors do. And I know damn well she's going to work even harder to get that A1c where she wants it because someone acknowledged her and her efforts. More and more I am convinced patients will do better if we acknowledge and praise, congratulate, encourage and inspire them.
In a Wall Street Journal article, "The Importance of Trying to Be a Good Patient" by Laura Landro, Landro cites medical educator and physician groups that are training doctors to conduct more sensitive interviews, recommending doctors find ways to praise patients for their competencies and express sympathy with how frustrated patients may feel. John Prescott, chief academic officer at the Association of American Medical Colleges, reports more and more communication training programs are trying to get doctors to step back and say, "What's going wrong with this discussion and how can I change that?" And, the authors of "Breaking the Cycle" recommend doctors let patients speak uninterrupted for three minutes and ask open-ended questions. We hark back to where I began.
As my sojourn out to New Jersey came to an end, the driver of my ride turned to me as we approached my neighborhood saying, "I heard you talking about diabetes..." (I had been on the phone in the car). I explained to him what I do and he began to tell me about his father who died of diabetes and his brother who is having a terrible time with it. And how he and his wife are concerned because they're both overweight.
I listened, answered his questions, encouraged him and spent an extra five minutes in the car in front of my building to give him information and a soft place to speak. When I reached for the car door handle to let myself out he reached for my hand, shook it and thanked me, wishing me the best day anyone ever has. I feel now as though it was kismet that I met the two people whom I know I impacted. I imagine they feel the same about meeting me.
A few days ago I stepped off the train to embrace my favorite Aunt. She was waiting with my parents to pick me and the hubby up at the train station. She's my mother's younger sister in a family of five girls and admittedly my favorite. I only see her every few years since she's moved to Ohio. There were big hugs and bigger smiles as we all took each other in.
Then the drive back to the parents' house had the glow of those unique wonderful moments of family ruckus. For while my Aunt was regaling us with the story of how her initial flight was cancelled due to engine trouble and she had to deplane and ride back home an hour on a mini bus and get her son in law to take her back to the airport the next day, my father, who has trouble hearing, was telling us about the neighbor he met at the swimming pool that morning....you get the idea
I watched the elders get out of the car helping my wobbly, soon-to-be 87 year old father. He refuses to use a cane. After all, that would mean he's old, oy, go figure. Everyone safely inside, the food was soon on the table, with stories volleying back and forth, like my mother who was running to and fro from the kitchen putting out more food. Soon my brother and his family who live nearby were part of the pleasant pandemonium. As the sun set, my hubby headed home and I stayed overnight so I could have more time to hear the tales I've heard sporadically before about how their parents came over from Hungary in steerage one five years ahead of the other, of the relatives lost in the war, of the impacts of immigrant life, both sad and funny enough to make us now cry with laughter.
The next day the big agenda item was going to the senior citizen center where two days a week my parents hear a lecture, take a stretch class and have lunch with their new found friends there. Of course my Aunt and I were the star attraction. In fact I seemed to have them all in stitches when I offered to bring them all water from the buffet and I returned with 7 glasses on a tray. Immediately they snorted with laughter shouting, "A tray! Why didn't we ever think of that?!"
Having such a good time I decided to stay an extra night and day for which I had not planned. I only had two test strips left with me so I had to determine at what times I would test during the next 24 hours. I felt uneasy; I have not had to parcel out my strips for years and years. In the early days my health insurance company only gave me enough strips to test three times a day and I balked at having to test three times a day. Today I test 6-8 times a day but I smiled noticing how I didn't like that I wouldn't be able to test frequently. Oh, how I've grown.
There was one other diabetes doing during my visit. The first evening I asked my Aunt, who has had type 2 for several years, "How's it going with your diabetes?" She told me visibly happy, "Very Good. My blood sugar is between 90 and 105 every morning." "Great," I said. Then her face crimped and she said, "But my doctor just gave me a prescription for another pill for my blood sugar, it doesn't make sense." "Well," I said, "If your doctor is giving you another pill then your blood sugar may be too high at other times of day. Do you test at any other times?" "No," my Aunt said, "He did tell me to do it before dinner, but I did that a few days and then well, you know, stopped."
I went into semi-lecture mode about how blood sugar fluctuates throughout the day and she should test at the 7 critical times to get a better picture: before each meal, two hours after each meal and before bed and that she could spread out those tests doing one each day of the week. As I talked, she straightened her spine and relaxed her face understanding something central to her care that she hadn't before. And I wondered how an intelligent, dynamic, bright and opinionated woman would not question her doctor when she didn't understand something. I surmised it's generational. She grew up when patients didn't question doctors and when her father walked both her and my mother to the home-made ice cream shop in their small town after dinner. He walked with one one evening and one another evening so they would each have his full attention. That's one of the stories I like best.
So in the end my life was interrupted - in the best way. A few days with a time out from the usual rhythm and work and email, and my Aunt's was interrupted as well as she likely got a little more than she expected. Beside the Chinese spare ribs and Jewish rye bread and lox that you apparently just can't get in Ohio, came a little diabetes education. And a smarter patient will be flying off into the sunset next Tuesday.
A moment in Lonelyville
I live very near a coffee shop called, "Lonelyville." I pass it on my morning walk. I always think what an odd name it is for a coffee shop. After all, the people sitting there chatting in groups of two and three and the ones on their own bent over their laptops are all there precisely to leave their lonely selves out the door, and feel unalone.
When diabetes patients are surveyed about the challenges of living with diabetes, loneliness is always at or near the top of the list. Living with chronic illness is a lonely affair, whereas short term illness not so much. For instance, break your arm and it will mend in a few weeks or months: You know the experience will end. That allows you to get lost in, and commune about, your poor arm: "Hey there, buddy, what happened to you?" people ask and you get to tell your tale of woe or anecdote. You can show off your cast, people sign it with endearments, and you complain about how itchy your arm is and people commiserate, "Oh, poor baby." And even if you feel lonely for a while, it will end and your arm will mend.
Diabetes doesn't end. And for most of us there's no outward appearance of it, nor how hard you work at managing it. I was out to dinner this week two nights in a row. The first night my husband and I were meeting an acquaintance of his and his new girlfriend. When the conversation turned to my work, she said brightly, "My brother in law has diabetes!" Deducing he had type 1 and had gotten it recently, I asked, "How's he doing?" She said, "He's doing really great." Her enthusiasm let me know that she really had no idea what he's living with. My husband must have felt similarly for he began to tell them what my typical day looks like: Pricking my finger up to ten times a day, calculating carbs at each meal, constant injections, all the daily planning and organization and on and on, and on. Their eyes widened just getting this small insight. And, I thought listening to my guy, Wow, look at how much I do in addition to my "normal" life! Yet I can't allow myself to think of it as more than "normal life" or it would be too overwhelming, or make me feel sorry for myself, and that would impede my every effort.
The next night we dined with a friend and met her beau. When she and I both took out our Apidra to shoot up for dinner, hers was in a pen and mine in a vial. The beau looked mystified and asked about the difference. A little more conversation told me he didn't know much at all about managing diabetes. Whether my friend chooses not to share much with him or he's not that interested, I don't know, but I wondered, isn't that a lonely place for her?
At some level diabetes just is a lonely place some of the time. I'm sure this is true of any long-term illness or grief experience. But I'm not drawing any comparisons here, only remarking on an essential reality of living with diabetes. And, even though I work in diabetes, know a multitude of patients and diabetes educators, have an unimaginably supportive husband, diabetes just is often a lonely affair. My loneliness lessens in those moments when I talk with my friends who have diabetes because diabetes is always part of our conversation, even when it's just sitting there beside us unspoken.
So really, all those blog posts that went out from the diabetes bloggers at the Roche social summit after we returned (a few posts ago), all those shouts while we were on site of, "Gosh, it's so great to finally meet you!" or "We ought to do this on a regular basis!" or "I couldn't wait to get here!" All the uncontained joy and bonding and merely sharing the same air and recognizing this complex dance we do every day with all its machinations and emotions, well, it was all about for a few moments not feeling so alone.
Rounding the last lap of my morning power walk I was thinking how lucky I am to have diabetes. How much healthier it has kept me because of all I do to manage it and how at 55 years old I have already lost friends to cancer and other illnesses and yet I am strong and relatively healthy.
Home, I looked at today's post on DiabetesMine and there was my story being told by Christian Stokes, an 18 year old diabetes advocate who got diabetes at 15 months. He knows what I know, and at such a young age. You will find his story inspiring. Thank you Amy for this post.
Today I'm truly excited. Today Medingo's new Solo MicroPump the tiniest, thinnest, lightest, tubeless pump is almost here. Yes, apparently almost. If you sign up here they will let you know when it will be available in your area.
If you've read the closing paragraph in my "50 Diabetes Myths" book (Myth #50, If I wear an insulin pump, my diabetes is really "bad") you know I wrote,
When I give a diabetes presentation, people always ask me whether I wear an insulin pump, and the answer is “no.” Primarily it’s because I’m used to injections and don’t mind them, I’m able to keep my A1C in the nondiabetic range through careful attention to my eating, exercise, and general health, and I don’t want to have a piece of equipment attached to me. However, as I have told everyone, and will go on record as saying, when the insulin pump is closer to the size of a credit card, I will be the first one in line to get mine.
In full disclosure, I haven't seen or tried the pump but I am, for sure, looking at a new generation of insulin pumps that Omnipod began. Two years ago I participated in the focus group for Solo MicroPump and the prototype for it has been sitting here beside my computer since. It has been a symbol of hope for me that the product would actually come to fruition one day.
Like Omnipod, which I wore for a few hours to experience the feel of it but didn't use because it was too big and clunky for me, the MicroPump is tubeless and is operated by a remote control. The MicroPump consists of two parts, an insulin reservoir and pump base. The reservoir holds 200 units of insulin and the video text says is replaced "when empty." However the video voiceover says, "according to your insulin manufacturer's recomendation." So, I'm not sure what that means. The pump base is replaced every three months. There is automatic cannula insertion like other pumps. But unlike the Omnipod, you can disconnect this pump for short periods of time, you don't discard it but refill it, saving you space and storage, and even if your remote is not with you, (I just know this will happen to me!) you can bolus by pressing buttons on the side of the pump.
As for insurance coverage, Medingo says on its Solo MicroPump web site that they are "currently working with insurance companies to gain reimbursement...insurance companies have been very receptive to the product and our Pay-as-You-Pump model."
So now all that remains in my mind is do I want to try the first generation or wait six or 12 months for the second? If you're at the AADE conference this week, the Solo MicroPump is being introduced in the exhibition hall.