Hope Warshaw wants to help providers better understand what it’s like to live with diabetes

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Hope Warshaw, certified diabetes educator, registered dietitian and board member of the American Association of Diabetes Educators (AADE), has been dedicated to diabetes care for over 30 years and written numerous books

Hope and I had worked on some written material two years ago, but I first met Hope at last year’s AADE annual meeting where we broke bread over breakfast. I love her spunk and commitment to helping patients and providers work better together to improve care.

Hope put forth the idea of interviewing me for a post on her blog exploring this topic. I asked Hope if I could share, and she readily agreed. Here’s the article: 

Dialoging about Diabetes: PWDs Offer Ways to Improve Communication and Care – #1 Riva Greenberg

As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of online diabetes social networks is helping people with diabetes (PWD) find and give support and feel supported. People are connecting, building relationships and feeling more positive about their diabetes. I’m delighted to see this trend!

As a DHCP I’ve long realized I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to help shift the dialog between providers and PWD to be more positive and supportive.

In my Dialoging about Diabetes blogs I’ll interview diabetes activists and social networkers. I ask them to offer us DHCPs ways to alter what we do and say to better support your diabetes care efforts and make living your real life…just a bit easier.

Two more goals: Help more PWD get connected and encourage more DHCPs to open the doors of social networking to PWD.

This first Dialoging about Diabetes interview is with Riva Greenberg. Greenberg describes herself as: a person with type 1 diabetes for 39 years, a patient advocate, diabetes book author,blogger for Huffington Post health coach and speaker. To learn more about Riva Greenberg check out her website.

HW Q: If you could give DHCPs tips to improve our understanding of the challenges PWD face in managing diabetes while living their real life, what would you tell them?
RG A: My basic tip is for HCPs to ask their patients more questions. Then listen with focused attention. It is by hearing what is going on for this person that you will understand the challenges managing diabetes presents as a whole, and specifically. People, when given an opportunity to share, are a treasure trove of information about what and where they need help as well as what they’re capable of and willing to do.
Greenberg offers DCHPs these thoughts:

  1. Start off looking for successes: “What has gone well for you since we last met?” Offer congratulations for any positive self-care action.
  2. Next, ask: “What have you found difficult?,” “What would you like to do better?” The answers will reveal the person’s challenges as well as opportunities for improvement.
  3. To assess a person’s support network, ask: “Who are the people who help and support you with your diabetes?,” “How do they help you?,” “How else would you like to be helped?”
  4. Ask questions that explore the person’s life beyond diabetes: family life, job, school, finances. A person’s actions are all rooted in their life systems. Try to understand a person’s challenges within the whole context of his/her life.

And Greenberg reminds us: Don’t forget the follow up questions to obtain a deeper understanding. Probing questions will begin to reveal how a person manages their diabetes amid managing his/her life. A goal is to make this as seamless and integrated as possible.

HW Q: How do the day to day challenges of managing diabetes impact one’s ability to manage diabetes?
 Given how busy we all are these days, life just gets in the way sometimes of doing great managing diabetes. Just last week I was having my bathroom renovated, was fighting a bad cold and had to vacate overnight since I had no toilet! Rushing out the door to my friend’s house I discovered when I got there that I forgot my insulin! This happens to me once every few years. If, however, you’re going through a particularly stressful time, like a divorce or a job loss, you can be sure it will be tougher to complete your diabetes to dos and the stress will interfere with your management and your blood sugar control. Since life will always throw challenges our way, the best way to stay healthy is to know how to manage diabetes and have ways to get through the tough times. It might be doing yoga, exercise, spending more time doing a hobby you love or with friends or family or a writing exercise about what you’re grateful for or using positive self-talk.

HW Q: How can DHCPs be more empathetic, understanding?
RG A: 
This is a great question and very much at the heart of the DHCP:PWD relationship. Many HCPs operate from a traditional “expert-model:” I’m the expert and I’ll tell you what to do. But unless the patient identifies why a change or action is meaningful for them to do, they won’t have much motivation and the change won’t last very long. DHCPs should aim to explore who their patients are, what’s important to them and what they’re willing and able to do. It should be a collaborative effort then to determine actions and goals. If the DHCP takes this approach, empathetic understanding will increase automatically.

HW Q: What messages do you have for PWDs about more actively communicating what they need from their DHCPs? 
RG A: Become more knowledgeable about diabetes: read a book, magazine, and web sites. Bring any questions your have on a piece of paper to your DHCP and write down the answer. Ask about any concerns you have, this may be about yourself or your family, they’re also affected. When your DHCP tells you something ask for clarification if you don’t fully understand. Don’t leave confused or not knowing what to do or why.

HW Q: How do you feel that social networking/being connected online can help people feel supported, possibly improve their care?  
RG A: Only someone with diabetes can know what it’s like to live with from the inside-out. Social networking has given people an incredible resource to share our knowledge, our woes and our successes and they provide support. When living with a chronic illness, support is like medicine.

HW Q: How do you encourage DHCPs to see social networking as an advantage to their efforts and an avenue for PWD to get increased support? 
RG A: Web sites can’t replace the face-to-face interaction with a trained provider. The more knowledgeable people become using social media, the better they may be able to deal with/manage their diabetes which can make a DHCPs job easier. Also, since providers are so short of time, a patient may actually become an expert on something their DHCP may not be and the information flow can go from patient to provider. I talk about this in one of my Huffington Posts, “Are Doctors Losing Their Relevance Due to Social Media Health Sites?”.

Greenberg’s parting comment: Since diabetes will require we have a relationship with our health care providers on a regular basis for the rest of our lives, striving to have one that’s collaborative and rewarding is to everyone’s benefit. If we can work better with our providers it’s one less stress and one more tool in our toolbox.

Thanks for sharing Riva!

Today brings a new score for endo

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. 


My new endo’s score card: 6.75


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.

A scare, an unnecessary fright and bad behavior, all over potassium

I had my blood drawn two weeks ago to check out my vitals and all were in target range except my potassium. Potassium?! Who even knew they tested your potassium? But I was told it was out of range, high, a “6” and needed to be retested to see whether the test result was accurate.  How important can it be that it might be a little high? [Normal range is 3.5-5.3 mEq/L.] O.K., no sweat. After all how important can potassium be? Certainly not up there with my A1c, cholesterol, triglycerides, microalbumin and thyroid activity.   

Now is when it gets interesting. First, I had to instruct my endocrinologist’s office to send the test results to my general practitioner. Isn’t that what an HMO is all about? Your GP sends you out to specialists who report back? Apparently not. When my GP got the results a day later his assistant called me to say, and I might add sounded a little worried, “Riva, do you know your potassium is high?! The doctor wants you to get it tested again.” “No problem,” I said nonchalantly. I already have an appointment next week to have it retested. I hung up the phone wondering what’s all the fuss about my potassium? 

I suppose my comfort came mostly from the fact that this very thing happened to me once before several years ago, and I’m basically healthy: I eat a Mediterranean-like diet, high in healthy fats, whole grains, low in fats and sugars, plenty of veggies, my weight is in range, I walk every day…But the idea that something might be wrong began to pray on me so I looked up on the internet foods high in potassium to see if that could have caused the spike. If so, I’ll cut down on those foods I decided. In my search naturally I started reading about potassium. The Mayo Clinic site reports, the most common cause of high potassium is impaired kidney function, such as due to acute or chronic kidney failure. High potassium is a life-threatening disorder that can cause muscle fatigue, paralysis, abnormal heart rhythms, nausea and require kidney dialysis.

Whoa, stop the train! Now I’m a little freaked out to be honest. I still believe my number must be wrong but….what if it was right? What if my potassium is now a problem and I’m headed for kidney failure or am already in the early stages? How I will fare with such a fate? Of course I also did read sometimes a report of high blood potassium isn’t accurate. It may be caused by the rupture of red blood cells in the blood sample during or shortly after drawing the sample. The ruptured cells leak their potassium into the serum. This falsely elevates the amount of potassium in the blood sample, even though the potassium level in your body is actually normal. But, achem, I wasn’t quite so confident anymore.

The conclusion to my retest is the first test result was an error and I’m in range. But here’s my real beef. I was retested on a Wednesday, first thing in the morning and called my endo Friday morning to get the results. His assistant told me he wasn’t in but would be in in the afternoon and yes she had the results. I was very clear that I wanted to know the results that day as I didn’t want to go the whole weekend fearing the worst. He didn’t call me back.

I called again Monday morning. I was told my endo was busy all day with patients and the assistant said fleetingly as a throw-away, “He doesn’t call you if your test result is O.K.” But I had no assurance of this. I repeated to her that it wasn’t O.K. before and I’d like to know for sure if that was a mistake. Please ask him to call me.” She said she would leave him the message. He didn’t call.

I called Tuesday morning and she told me, “I gave him the message yesterday. I’ll tell him that you called again.” No return phone call. I called again at 5 PM to find the office closed and so I left this message, more or less. “I can’t understand why after having an abnormal value for my potassium and getting it retested and not knowing whether or not it’s still abnormal and calling Friday, Monday and today, no one has bothered to call me back and let me know if I’m O.K!” It took five days to get me to that point. My husband was already there the first day.

My doctor called the following morning. “What can I do for you,” he said. No apology, very matter of fact, and he told me my potassium is in range. As he was about to get off the phone he said, “I don’t call patients when the results are normal.” I said, “After getting an initial result that wasn’t, it only makes sense I would want to know whether this result was also abnormal or not.” He muttered something that was hard to make out and we hung up.

I began to think about what this policy of only call a patient when there’s a problem creates. It means you don’t even hear from your doctor when there’s a resolution to a problem. Further, don’t you think if your doctor called and said when your test results were all in range, “Your labs are all good, all normal, good work! Keep it up, you’re doing something right and that’s great!” that you’d be more motivated to continue the good work? Yes, it may cost a doctor another half hour a day, or maybe he’d outsource it to his nurse. But right now, without it, it costs patients a lot of mental stress and our healthcare system big bucks. How perverse is our system that hard work and effort go unappreciated and unacknowledged and we’re only told about problems? 

O.K., I’ve ranted, it’s out of my system now, but just between you and me, I’m changing endos.

The emerging trend in chronic illness

Screen Shot 2015-02-08 at 2.58.07 PMFind the balance where you manage your illness well, and, really enjoy your life  

There is a slowly emerging trend in chronic illness, very slowly emerging, but you can see elements of it here and there. I have referred to it before in books I’ve read like Richard Cohen’sBlindsided about his multiple sclerosis and his newest book, Strong at the Broken Places, that profiles people with a variety of chronic conditions. There’s Jill Sklar’s book, The Five Gifts of Illness about living with Crohn’s disease, and now my own book, The ABCs of Loving Yourself with Diabetes, featuring a new approach to living with diabetes.

The emerging trend in chronic illness has various components. Here are some of them in no specific order:

1.To live with illness from a different perspective – that of using your illness as a catalyst to find greater joy, purpose and meaning in your life.

2. To see the patient as the central figure in managing his or her illness, rather than the health care provider (hcp), although hcps are essential for information, education, direction and advice.

3. The hcp acts as a coach to collaboratively, with the patient, create a  treatment plan that really works for the patient.

4. Hcp and patient together examine the patient’s “life systems,” ie cultural mores, food preferences, family structure, support network, neighborhood advantages or limitations, work etc. in order to design a treatment plan that will work in that individual’s unique life.

There’s an interesting article on a management blog that speaks to these points  titled, “Why patients have to be doctors today” It’s worth a read. The article looks at diabetes in particular not so much as a medical condition, but from the point of a chronic condition that need to be managed by the patient. It is a bit lengthy, but don’t let that scare you, nor some of its “management-speak.” You will get an insightful view regarding what supports good diabetes management and what patients and the medical community are coming up with.

I wonder what has tipped our gaze now to look at chronic illness through this prism of patient management and what can be gained from illness. I would imagine it’s because we have new medicines and procedures that allow us to live longer with illnesses that would have killed us decades ago. With someone getting diabetes every 10 seconds around the world there will only be many, many more individuals, and by virtue of that, also families living with chronic illness.

What we need now is for our medical professionals to be trained in chronic care so that they can help patients better, and I’d want to say best, their quality of life within the parameters of their illness.

Since doctors are trained in curable illness – diagnosing, medicating, cutting and curing, there is little in their toolbox to help those of us with life-long conditions. But I see some headway and as “Why patients have to be doctors today” points out, it is a movement starting on the ground with patients supporting and counseling each other as many from the inside report peer-coaching will be the next wave in chronic care. We see it evidenced already on the health and community web sites popping up every day, and programs like my own A1c Champion program, where I, merely as a fellow patient, deliver motivational diabetes presentations to diabetes patients.   

It is my hope that my contribution in diabetes will be to help people see that if you look at diabetes through a different lens, you can use it to create a bigger, more fulfilling, more meaningful and healthier life than you may even have had before. It would be nice to think the medical community is not too far behind me.