Words Matter - Let's stop saying "Lifestyle"

I recently read an article by Paul Lincoln of the UK Public Health Network.

He argues that "I believe the term lifestyle or lifestyle factors should be completely abandoned by public health professionals/"  Why does he believe that?  Well there is a very good reason.  As Mr Lincoln notes, this term, “Lifestyle,” is a loaded term that reinforces stereotypes about individuals and a world view that people are majorly or entirely responsible for their own health. 

Mr. Lincoln suggests that the term "deathstyle" would probably be better because that clearly communicates that people are consciously making a choice to be unhealthy and die.  I also believe this "lifestyle" language in the public health debate is very harmful.  It places all the blame on the patient despite the clear evidence that patients do not actively choose to have diabetes or die early.  Sure, there are factors which affect things, if you don't eat right and don't exercise, that can be a factor in the emergence of diabetes in many of us.  But it isn't the only factor, genetics is certainly very important and probably more important.

My Own Personal Diabetes Burnout

This prompt is really a personal thing for me at this point.  At this point I really feel pulled between competing objectives and the idea that I can't meet my goals.  And it leaves me feeling like a failure.  For quite some time I've been very active in the on-line forums.  I've been an administrator for the community at TuDiabetes.  But in the last year I've worked very hard to be an advocate and to blog.  But all of these things over the last year have left me feeling like I've bitten off more than I can chew.  Life isn't just about my blood sugar control or my diabetes advocacy, it is about my day job and about my support of my family and friends.  And make no mistake, having a day job that asks you to spend 12 hours a day or family that is in crisis, this stuff can be very difficult to deal with even if you don't have diabetes.  Frankly, I just want to sleep in.  I just want a break.  It isn't about by just blood sugar control, it is about my emotional energy to fulfill what I believe to be what I have promised to myself and others.

So here are my my rules:

1. Forgive yourself for not being a model.  I am a person.  I am flawed.  I sorry, but that is who I am.  I can't always talk about stuff that I deal with but I still deal with it.  Sometimes I just can't write about it and I just can't share it.  But I have to deal with it.

2. I feel like I have to balance my life and the balance means I cannot spend as much energy and time as I would like to the DOC.  I have a full-time job.  Sometimes I am just plain unavailable or I just am so busy I can't post anything. I am regularly faced with a compromise about how I spend my time in the DOC and my "real job." I can't just give up my real job.  It breaks my heart but it is a reality.

3. And while we deal with balance we have to talk about family.  It isn't just my job, but my family that is a priority.  I have a priority for my children but also my extended family.  I wish it wasn't necessary that my extended family call on me to help, but they do and I feel like I have an obligation. I am truly sorry that at times I put my extended family at times ahead of my DOC family, but I hope you understand.

4. My voice is my own and I should not let it be distorted.  I worry that my writings and posts will be employed by others in ways that are not consistent with my views.  I have to learn to accept that what I have written stands on it's own and may result in things I never anticipated or wanted.

5. I have to accept that my views and writings are sometimes controversial and are subject to criticism and I may even write something that is wrong.  I write things that will totally irritate people.  I want people to think.  But they may disagree and they may call me all sorts of names and criticize me, my intelligence and my heritage.  I have to accept these attacks and not take it personally.  I ask to have the grace to accept criticism gracefully and to accept comments objectively and be willing to change my opinions based on new opinions.

6.  I also want to share an important rule.  Everyone's experience is different, you may not see the same experience as me but your experience is real.  If you find the anchovy diet works for you, that is great.  Everyone is different.  My experience that works for me is great, but your experience that works for you is just as celebratory.  Learning to be non-judgmental and respect others success and decisions is really, really important.

7. And finally, I would like to note that emotional burnout comes from our failure to be able to handle the continued stress related to having diabetes and communicating to the DOC.  We will always have diabetes, but I hope that we always consider that we have firm rule that we take care of ourselves before we worry about writing some blog for the DOC.  We absolutely must place our own personal health and happiness as a priority.

I struggle with these rules as a way to enable me to continue to be out there in the DOC.  But I also realize there everyone else struggles with the same things.

Is SMBG for Type 2 Useful?

Dana Brackney PhD, RN, CNS, CDE, BC-ADM

This is a report of a presentation at AADE 2015 by Dana Brackney PhD, RN, CNS, CDE, BC-ADM entitled "Use of SMBG in T2 DM Self-Management:‘Knowing Where I Am At.’"  There still remains a huge controversy on whether Self-Monitored Blood Glucose (SMBG) is effective and worth the cost in diabetes patients who are not insulin using.  This presentation was a breath of fresh air as it described purposeful SMGB and efforts to measure positive outcomes.  While this is a small and limited study, hopefully this will start to gather more interest in doing studies where SMBG is done in a way that is patient centered and purposeful.  There are many patients that learn to "Eat to Your Meter" with great success.  It is really too bad that studies of SMBG effectiveness have been so deeply flawed and although they claim to be "intervention" studies, if you don't use SMBG in a purposeful way then you don't really have an intervention.

AADE 2015 - Does the DOC Benefit or Harm Patients?

Michelle Litchman, PhD FNP-BC

Diabetes education is still navigating its way through the wave of change as patients turn to on line communities and resources for knowledge and support.  Educators have had fundamental questions about whether DOC really helps patients in measurable ways and whether there are serious risks of harm.  On on Aug 8^th at AADE 2015, a presentation entitled The Diabetes Online Community: A SOCIAL MEDI(c)A(l) Approach to #DiabetesCare by a bright young researcher named Michelle Litchman, PhD FNP-BC finally spread some light on these questions.   The conclusions of her work suggest that involvement in the DOC is associated with better glycemic control, self-care behavior and quality of life.   Dr. Litchman further found very little reporting of harm, with no serious harm reported and only 2% of her respondents report minor harm.  This probably suggests the DOC is a safer environment than a hospital.  She further observed that the DOC seemed to fill a fundamental gap in the current healthcare system, providing information, emotional support and a sense of community and belonging that is simply not provided as part of the current system.  Dr. Litchman’s study does have some limitations being a survey and not an intervention study one cannot conclude that the DOC caused all these positive outcomes, it may simply be that motivated patients sought out the DOC.  And while there were few type 2 respondents it did provide a compelling picture of the future.  Dr. Litchman concluded that for those that participated in the DOC, they patients had significantly improved glycemic control, self-care, emotional health and quality of life.  She further concluded that participation in the DOC should be considered for all adults with diabetes.

Words Matter – Why You Can’t Reverse Type 2 Diabetes

Don't Say "Reverse Diabetes"
It Makes My Hair Catch on Fire!

I feel constantly bombarded with claims that Type 2 diabetes can be reversed and prevented.  I even hear absurdities about how Type 2 diabetes can be cured.  I expect these things from the scams that we all see in our email inboxes and across the web.  But what really sets my hair on fire is the use of these words by people who should know better.  Medical professionals and our government should know better.  And unfortunately when the leaders of the conversation send out a confused message our entire society follows them down the wrong path.  So why does it matter?  It matters because these words communicate meaning and concepts and when these concepts are inaccurate and misleading they can be harmful.  It can leaves people with diabetes confused about their condition, encouraged to pursue bad goals, feeling blame and shame that they “didn’t do it right” and full of false hope.  Today, I'm going to focus on the phrase "Reversing Diabetes" and end with a plea that we stop using the term "reversing" and use the term "remission."  Nobody has ever shown that once you have Type 2 diabetes that you can reverse the condition to become non-diabetic.  All we can do is slow or stop the progression.  Let's start using the term remission when we successfully manage the symptoms of diabetes, we all know that our diabetes is still there and can and will rear it's ugly head if we stray from our treatment.

The Results are In - Does Brian Have MODY?

I had posted before about getting the MODY test, a test that would determine if I have an infrequent form of diabetes that is due to a single genetic defect.  The results of this would explain why I never responded to Type 2 medications and why I always have had a chronically high fasting number.  I had been asking for this test for more than five years and finally been granted the test.  I got the test in May of this year and had waited for nearly two months for the result.  My feelings on this matter have been mixed.  I have always wanted a better understanding of why I got diabetes and exactly what kind of diabetes I actually have can make a difference in assuring I get proper treatment.  But on the other hand I have spend the last decade with an Type 2 diabetes.  I know that we say that "We are Not Our Diabetes."  But type 2 diabetes has become part of my identity and my efforts to advocate for type 2 diabetes would just seem so shallow and hypocritical if I don't actually have Type 2 diabetes.  So if you, my attentive readers wish to learn the results of my test, you will just have to read on.

I'm getting the MODY Test!

In my previous post about what I learned at the ADA Scientific Sessions about MODY, I alluded to my own suspicions that I myself might have MODY (MODY-2/GCK in particular).   You can read more about MODY in my previous introductory post on the topic.  I first became suspicious more than five years ago, but my requests to my doctors were all denied.  I was basically told that I didn't fit the basic screening criteria.  I made several personal contacts to Kovler asking for their assistance or their referral to a doctor competent in MODY diagnosis and treatment in my area.  I actually emailed the principle staff, but my emails went unanswered.  I then tried to enroll in trials, but by this time I had started insulin so I was rejected.  Apparently there is a belief that insulin is not effective (which we will debate later).  And I've been seeing my current endo for 4 years and she is a real patient centered doctor, so she always listened attentively to my requests for MODY testing, but she always felt that my successful treatment with insulin contraindicated MODY-2.

But at my appointment in April of this year things had changed.  New screening criteria had been released by Kovler that explicitly suggested that chronic high fastings were suggestive of MODY.  And there are other things about me which are confusing, such as my seeming total invulnerability to hypoglycemia despite very tight control (my last HbA1c was 5.0%).  Sure some of it may be attributed to my strict regime and very low carb diet, but still, no hypos over a whole three month period?  And I can start feeling hypo at anything below 120 mg/dl.  So on April 29th, I walked out of the door with a requisition form for MODY testing.  AthenaDiagnostics appears to be the only commercial lab in the US doing MODY testing.  This post is about my journey to get that test done.

ADA, Me and My MODY (Maybe) - Part 3

Journey to a Miracle
57 minutes + additional information

This is the final installment of my posts about what I learned about MODY at the 75th ADA Scientific Sessions.  You can read the first two installments in "ADA, Me and My MODY (Maybe) - Part 1" and "ADA, Me and My MODY (Maybe) - Part 2."  In this post I'm going to talk about the movie "Journey to a Miracle: Freedom from Insulin" that claims to be "A PBS documentary of a breathtaking cure for diabetes and the lives that were changed forever."

The movie, which is about an hour long, is a real tear jerker, mostly focused on the stories of a small group of children diagnosed with MODY (with MODY-3 in particular) who had previously been given a T1 diagnosis.  Once diagnosed with MODY-3 the children were able to start on sulfonylureas and moved off of insulin.  That is the miracle.

While my heart went out to the children and their stories I felt a bit dismayed at the message of the movie that you can just "cure" MODY by taking a little pill.  The movie portrayed insulin as a terrible life long burden with horrendous consequences.  And then suggested that taking this little pill would "cure" the patients of diabetes and that they wouldn't have any further consequences from MODY.  I'm not so sure of the validity of that message.

The Social Media Side of the ADA Scientific Sessions

[I Am] an Advocate
photo courtesy of DHF

I have to say, I was was impressed with the social media aspect of the ADA Scientific Sessions.  There apparently was a constant stream of events, I attended a few and I'll talk about them.  I also had a chance to meet some people face to face who I had never met before and that was wonderful.  And then the highlight for me was the Happy Hour event put on by the Diabetes Hands Foundation (DHF).  We got to hear my new friend and comedian Chelcie Rice and I had lots of opportunity to meet people and in particular the supporters of DHF.  And the best part was that there an auction of three paintings by Manny Hernandez's very talented wife Andreina Davila and I got to take home the painting on the left.  The vast majority of people from the Diabetes Online Community (DOC) that attended were Type 1.  There were only a few people with Type 2, but fortunately I had the opportunity to meet David Mendosa and Gretchen Becker both whose writings had an important influence on my diabetic career.

ADA, Me and My MODY (Maybe) - Part 2

This post is a continuation of my first post on the subject "ADA, Me and My MODY (Maybe) - Part 1" where it discussed a "Meet the Expert" session on Monogenic Diabetes with Dr. Rochelle Naylor.  Today I'll discuss what I learned on Saturday of the ADA Scientific Sessions when I was fortunate to catch Prof Andrew Hattersley in a symposia on monogenic diabetes entitled "Monogenic Diabetes Matters - Getting the Diagnosis and Treatment Right."  Prof Hattersley had a very good description of GCK that it essentially shifted the entire glucose response curve to the right.   This made the fasting blood sugar higher and it meant that the glucose mediated insulin secretion happened at a higher level than in non-diabetics.  This actually made sense to me as I have observed in my own response.  My fasting blood sugar is about 40-80 mg/dl higher than normal and that although a carby meal will shoot me up over 200 mg/dl I hardly essentially never observed readings at 300 mg/dl and above.  Prof Hattersley also noted that GCK patients will feel hypo at a normal glucose.  This is also something I observe.  And it isn't about becoming "adjusted" to the blood sugar level.  My blood sugars are very consistent, but when I get my blood sugars below 100 mg/dl I start to get that hypo feeling.

History of Diabetes - ADA History Exhibit and Sessions

This was the 75th ADA Scientific Sessions and history played an important role.  In addition to a large display of artifacts and recordings of important diabetes history there was also a special two hour session devoted to "50 Years of Diabetes Research and Treatment."  The session was chaired by Robert Ratner who graciously lent many of the artifacts on display in the history exhibit.  The Symposium had Dr. Daniel Forte give an overview of 50 years of research, Dr. Fred Whitehouse gave a great overview of treatment and Dr. Michael Brownlee gave a perspective as a patient, physician and researcher.  Finally, Kathrym Ham gave a really personal and touching story of her 78 years with Type 1.   There were about 70 Type 1 50 year Joslin Medalists in attendance many with the supporting family.  Dr. Whitehouse specifically recognized all the medalists and noted in particular the family support.  One has to but wonder what role that support had on the long-term success of the medalists.

That sums up the symposium, but if you want to see more of the History Exhibit I encourage you to read more of this post

ADA History Exhibit

ADA, Me and My MODY (Maybe) - Part 1

I recently posted an introduction to Maturity Onset Diabetes of the Young (MODY).  This is of personal interest to me as I've had a suspicion that I might have MODY for more than five years.  This last April I was shocked to actually be referred for the genetic tests for MODY.  So being able to attend the 75th ADA Scientific Sessions and learn more about MODY and have a chance to hear the worlds experts and even ask some questions was a great opportunity.  In this post I'll be talking about my attendance at an ask the expert session on MODY by Dr. Rochelle Naylor of Kovler.  In subsequent posts I'll talk about a presentation by the infamous Professor Andrew Hattersley of Exeter as well as my viewing of the film "Journey to a Miracle" a movie about MODY.

ADA Ruminations - Does Insulin "Innovation" Actually Help Patients?

I saw a number of new insulin options being introduced on the exhibit floor of the ADA Scientific Sessions and while they do seem like they will be useful to patients I am more concerned that they are somewhat false innovations that have been designed solely to make money.  And during a symposia session on the costs of medications for diabetes an alarming picture of the insulin industry emerged.   In this post I'll be exploring the landscape of insulin costs from the patient perspective and it isn't a pretty sight.

When Diabetes is not Type 1 or Type 2 - Monogenic Diabetes

This is an introductory post on Monogenic Diabetes (MD), a form of diabetes that is neither Type 1 nor Type 2.  It is caused by a genetic variation (or error depending on your view) which causes abnormalities in blood sugar regulation.  MD is technically two types of genetic variations, neonatal diabetes and what is called Maturity Onset Diabetes of the Young (MODY).  All the forms of MD are inherent at birth, but MODY typically is first diagnosable in children and young adults, hence the term MODY.  In fact anyone can be diagnosed with MODY at any age and it is thought that at least 1-2% of all diabetes cases are MODY, so there might be more than 500,000 people in the US with MODY.  MODY was first identified in the 1970s and there are now at least 11 forms of MODY that have been identified.  And for many of these forms there are literally dozens of different variations that can lead to the genetic defect.

For years I've wondered whether I might have MODY.  In the following, I'm going to give more background on MODY and in future posts I'll discuss my journey leading up to being tested for MODY.  It may seem strange that I would obsess about this but the most important thing to remember is that being diagnosed with Type 2 isn't a specific diagnosis.  Type 2 is a diagnosis of exclusion and that actually means that you have "Diabetes of Unknown Causes."  And if you don't know your specific diagnosis you can mistreated, potentially severely mistreated.  And unfortunately 95% of patients with MODY are misdiagnosed as either Type 1 or Type 2. In further posts I'll tell you about actually getting the tests and eventually I'll tell you when I hear about the results (which I don't know yet).

ADA Scientific Sessions for the Newbie

I was fortunate to be awarded a scholarship by the Diabetes Hands Foundation (DHF) to attend the 75th ADA Scientific Sessions held in Boston on June 5-9.  This scholarship was one of a series of Diabetes Advocates Conference Scholarships awarded by DHF for advocates to attend a number of conferences and meetings this year and was made possible through the generous support of Abbott Diabetes Care, BI-Lilly Alliance, Dexcom, Janssen, Novo Nordisk, and Medtronic.

My Diabetes is like Kung Fu

Personify - to think of or represent (a thing or idea) as a person or as having human qualities or powers (Merriam - Webster)

I think that my diabetes is a bit like the personification of David Carradine as the character Kwai Chang Caine in the series Kung Fu.  Some of you may have no memories of his iconic role as a Shaolin monk in the wild american west.   I'd like to explore the theme of how my diabetes is personified by Carradine in this role.

Taking Control and Starting Insulin

This was originally posted more than four years ago TuDiabetes on December 20, 2010 and this event marked a big change in my life both in my diabetes and in my relationship with my health care team.  It sparked some interesting conversation at the time.

Well, it has been a long time coming, but I've decided that I'm going to start an insulin regime.  Some of you may have thought that I've been on insulin for quite some time, I'm sorry if I left you with an incorrect impression. I decided a while ago that I would be moving to insulin and that in order to be successful, I needed to be smart about it.  I've been asking to start insulin for three years and been repeatedly denied.  Most recently changes in my triple medication regime failed again to show any long-term improvement in my blood sugar control.  I had my c-peptide tested and found that I appear to be insulin deficient (not enough yet to meet pump criteria).  And after a series of "unfortunate" events, I've had to leave my endo who never gave me the care I sought.  Given that I have to start with a new endo and my regular doctor long ago threw up her hands at being able to help me, it seems like the perfect timing.

What and How I Eat

Soon after my diagnosis with the help of the online community and Richard Bernstein I learned that restricting the carbs in my diet let to dramatic improvements in my blood sugar control.  But I also came face to face with the utter contradiction between what worked for me and what I was told by the so-called "experts."  This led to a period of years where I variously went back and forth trying to work with my healthcare team and periods when I actively deceived them and declined to talk about what I was eating.  Eventually I started seeing more understanding doctors (I'm still working on the educator/dietician side of the issue).  My current endo is very supportive of my diet.

Changing the Misunderstanding of Type 2 Diabetes

I'd like to talk about the terrible stigma that comes with Type 2 diabetes.  I know that everyone with diabetes of any kind has to deal with stigma and blame and bad feelings about the condition, but it is particularly bad with Type 2.  And the key reason is that obesity and weight gain are associated with Type 2.  But we make a fundamental mistake if we make the leap in logic to think that just because something is associated that therefore it must be the cause.  Today, I'm going to talk about how we can try to change things to both better understand ourselves how obesity and Type 2 are related and how we can try to work to share that with the general population, the healthcare system (who actually don't seem to understand it) and our government.

Cleaning out the closet - Expired Meat and Medications

My Kitchen Cabinet
The bane of my wife's existence

Today's prompt is to talk about cleaning out your closet.  I'm going to stick pretty close to the theme that Rick over at RadDiabetes talked about.  And that is developing a rational and manageable approach in our lives to "What if?"  Many of us have very real dangers and fears in our lives, that our doctors and insurance companies will conspire to deny us vital treatments, medications and insulin.  That Snowmageddon will hit and our ability to get out and get vital supplies will be gone.  So we start to act like little survivalists.  We keep hoards of supplies.  And we want them convenient.  So it seems I must show my own distressing hoard to the right.  And I admit, I don't just do this with diabetes supplies, I do this with food.  I have a large fridge inside, a second large fridge in the garage (I used to have two in the garage) and a large chest freezer.  I have enough food to feed an army for six months.  And that brings me to key issue in my blog today which is actually exemplified by my behavior with food.  I admit it, I buy food that is expiring and I hoard it and then actually have to throw a bunch out when it get's really "bad."  This behavior is notable in my purchasing of expiring meat which I buy at discounted prices, then vacuum seal and freeze.  Have you seen a piece of meat in the bottom of the freezer that has an unknown date (I now date my meat, but it can still be scary).  And so we come back round to diabetes supplies (and medical supplies in general).  I am terrible about throwing expired stuff out.

Keeping Private to Protect My Privacy

Soon after my diagnosis I came to a level of acceptance of my diabetes that enabled me to open up to my circle of family, friends and colleagues.  This didn’t mean that I went around to strangers telling them my diabetes stories, but those around me who cared about me and needed to understand were aware.  But on the other side of it I have been perhaps somewhat paranoid about keeping things private.  In previous times the only people we knew in our social circles were people that were local to us, as above our friends, family and colleagues.  These were the people in our village.  But today, there is no village.  The internet has opened up and if you are public about something then the whole world can know it and there can be consequences.  If you don’t control your private information then your privacy can be invaded and you can be harmed. 

You Can Determine Your Own Health Destiny

Being diagnosed with diabetes can be a sudden traumatic event.  Suddenly we are told we have a chronic life-long condition for which there is no cure and that we face a life of complications and early death.   As someone diagnosed with Type 2 this can be particularly shocking as we are treated by the medical system in a really patronizing way with very mixed messages.  We are told that not only did we cause our condition by being fat and lazy we are also given commands by our doctors to take our medication and do certain things with our lifestyle.   Before being diagnosed with diabetes my interactions for the healthcare system was for acute care, a cut which was stitched up, an infection with a prescription of an antibiotic.  I saw the doctor, trusted their competence. I was told what to do and then left and complied with their direction.

This is My Story

First diagnosed T2 in 2005, I soon learned about the effectiveness of low carb diets from the on-line community and became dedicated to support through on-line communities.

When I was diagnosed T2 in 2005, the doctor simply told me my fasting blood sugar was over the limit and it had been that way for the last couple of years. When he ran my A1c it came back at 8%, not bad in the scope of things, but I had diabetes. He promptly gave me a prescription for metformin and told me that I was “fixed.” Boy was he wrong. So started my journey into the medical morass of diabetes care.