A Lovely Rant by Ira Hirsh

I started using the acronym YDMV years ago on web boards as a way of responding to individuals who aggressively pushed a single 'RIGHT WAY' of managing diabetes. Some time its was the right pump or meter. Occasionally it was shots vs pumps vs pens. Sometimes it was even this is THE I:C ratio you should use because it work for us perfectly.

I would typically agree making a general point about our family's approach to attention to care without mentioning "RIGHT WAY" and add Your Diabetes May Vary. That way when they disagreed with my way it was covered by the YDMV statement and gave others the same out if they didn't agree with the "Right Way."

I also thought it would be fun if it became a commonly used term on the boards. It did.

Part of the new care shake up in the US is grading doctors based on metrics. (For the record I HATE the word metrics. It is a buzz word typically used by people who substitute a number for thoughtful consideration.) Measures would be great if the metrics aligned with the current ADA treatment recommendation about individualization of targets based on the patient's specific situation. (1) It would be fantastic if there was a measure that identified that caregivers spend the time necessary to find the individual targets and customize goals for each patient.

That ain't how it works. (see I feelings for the word metrics above.)

The new system holds Docs to static levels of HbA1c, LDL-cholesterol, and blood pressure. So if you are the doc and you have a patient who is way out of range and you help decrease variability, lower A1C make progress on LDL and blood pressure it doesn't count. Progress is not the end static measure are. In this model success is a number not behaviors.

Hey Who ever makes this stuff up. YDMV.

All diabetes is a progressive. Succes is adapting and changing to make living with diabetes about life not about numbers.


Dr Ira Hirsch as a lovely rant about this. Have a read.

(1) American Diabetes Association: Glycemic targets. Diabetes Care 2015;38(Suppl 1):S33–S40.

Peer Support through Activity Apps

Adam has a great post at diaTribe. I know, I know... Saying 'Adam' and 'great post' is redundant. Adam is the very definition of great posts.

It is just this particular one has me thinking about peer to peer support in a different way. We often cite the emotional value of not being alone with diabetes. That is big, huge. No question.

My current place on the diabetes continuum is very much dominated by getting my ass in gear. Here is a happy little workout blues riff on the topic, "Can't Get My Ass In Gear" - Coco Montoya." I love that tune. I don't remember who put me on to it I think it was Rex. I hope so 'cause it is his humor.

So clearly iTunes is a great app but while it may play tunes on the subject it doesn't really get my ass in gear. I need some encouragement for that. That is what Adam talks about.  He writes of health apps:

Friendly encouragement from friends. I’m a huge fan of the social aspects of activity tracking – whereby you can “follow” your friends, give them encouragement, and challenge each other. This might sound like it could be cutthroat or competitive, but I’ve found it to be the exact opposite. Even the language used (e.g., “Cheer” [Fitbit], “Kudos” [Strava]) speaks to the positive atmosphere that these apps seek to foster. According to Fitbit’s McDonough, for each extra friend someone has on the Fitbit system, his or her activity increases by 750 steps per day. Based on my conversations with friends, however, the social features are not for everyone – some don’t want followers! Fortunately, you can toggle these on or off as you desire.

I was spectacularly intimidated when Adam first reached out to "share workouts." Read his bit, he is fit and motivated. I am neither, see the aforementioned "ass in gear" issue. I didn't want to even think about being in the same league as Adam. I am not but that is cool, that ain't the point. The point is supporting each other.

Adam and others are very much part of my peer support system now.

The encouragement factor is real and so very true. A "Kudo" means a lot to me. It means I am not alone in efforts to get my ass in gear. Hey.. wait... see that? It is about not being alone. It is about having someone with you, not as a competitor but as a supporter of progress. Each kudos is a sticker of progress. Each feel good and so does sharing them.

So my thanks to Adam, Jenny, Lane, Mike and Mari for the Kudos on Strava.com.

Need help getting your ass in gear? Maybe a few kudos will help. A little Coco Montoya help too. Join me on Strava.

Do the #BigBlueTest all year, your #WalkWithD and be a walk, ride, run, jog, swim, lift, what ever. Find and support and be supported by peers.

Hey Adam needs a hand, Little help?

This is from my good friend and inspiration to bicycle, Adam Brown at diaTribe. Help him out OK? Just to be clear, diaTribe is asking to help better focus on what matters to PWD when we do the next round of #DOCasksFDA, not FDA asking. Go us!

Hello DOC friends! 

On November 3, the FDA will host an unprecedented discussion between the diabetes community and senior agency leadership (both drugs and devices). The event will be live webcast from 1 - 4 pm. We want this to be nothing short of a home run. The event will include a panel of patients (T1 and T2), as well as representatives from ADA, JDRF, and diaTribe. As a community, our job is to present the numerous challenges we as patients face each day, and we need as many opinions as possible to be a part of this discussion! With FDA, ADA, JDRF, and dQ&A input, we have created a survey posted at www.diaTribe.org/survey. We are asking the entire diabetes community (T1 and T2!) to please fill out this short survey and share thoughts on what's important when it comes to living with diabetes. This feedback will go DIRECTLY to FDA and help influence the conversation on November 3. 

FDA is currently working on the registration to sign up for this webcast event; as we understand it, this should be posted within the week. We will be in touch with that information and a finalized agenda as soon as we have it. For now, it is mission critical to have a massive response to the survey. We need to show the FDA that patients care about these issues, that patients have valuable input to share, and that the treatment options we have are still not good enough.

Thank you on behalf of our entire team for your help in spreading the word on the survey and about the event. We’re truly excited about the potential to open the lines of communication with the FDA, which for too long has been a black box. We need more patient input into the drug and device approval process, and we see November 3 as a very key avenue to making that happen. Let’s show the FDA how committed our community is.

very best wishes,

Adam

The Bionic P With Katie C

In case you missed it, Katie Couric has a great story on Ed Damiano.

Enjoy!


 

Mark Your Calendar - Nov 3 diaTribe Town Hall Meeting with FDA

What's Missing from HHS Report on Test Strip Costs

A report, just out this month, by the Department of Health and Human Services Office of Inspector General looks at Medicaid costs for diabetic test strips. My search tool couldn't find in it the following words:

 Hypoglycemia, Hyperglycemia, Accurate, Safe

Have a look. It is here. Let me know if I am wrong. (they do say diabetic but not diabetes.) It seems they are missing the real point. Feel free to list any other key words NOT in the report in a comment below. 

I am 100% for saving money. 

To me saving is all about getting the right things at the right prices. Test strips exist so people with Diabetes can manage blood sugar in a safe, target range, minimizing Hypoglycemia and Hyperglycemia. To do that test strips need to be Accurate within the standards for which they were approved. Not all strips preform as approved and there is evidence that suggests some may achieve low prices by failing on quality. 

The cost of diabetes care is not test strips. As Bill Polonsky says, "Well controlled diabetes is the leading cause of nothing." On the other hand, insulin overdose is estimated to puts 97,000 plus Americans in the Emergency Room every year (more than Meth!) at a cost of well over a half a billion dollars. Estimates including the cost of diabetes complications are in the range into hundreds of billions.

To me, the Inspector General's report is the wrong track.  It is penny wise and pound foolish. I suggest that the best thing to do, to save money in diabetes care, is avoiding the big costs of complications by investing in cheap stuff, like accurate strips with the education and support necessary to use them effectively. Sadly I can't think of much that can be done right now about the Inspector General or Medicaid. They take the position that FDA regulates meters and all FDA approved meters are created equal. 

They are not. See http://www.stripsafely.com/strip/

We can do something about test strips, right now. We can comment to FDA's open dockets on new test strip guidance. They are open to April 7, 2014. We can talk about the importance of accuracy, post market evaluations, that only meter meeting new and safe guidelines should be approved to dose insulin and more. To make it easy there are copy and paste comments with a link to the FDA dockets here:

http://www.stripsafely.com/sample-page/guidance/

http://oig.hhs.gov/oas/reports/region5/51300033.pdf 

Moo II / Moo Too. Keep Meters in the ER.

Will there be a blood glucose meter in the Emergency Room? 

I have borrowed ideas from Christel’s blog post on posting comments to the FDA open meter docket. The one with this great picture: 

Articles published last week are timely and relevant to the the professional / in hospital use FDA Meter guidance. Some of the stuff last week was rather startling. What's got me worrying is the remote possibility there will be no blood glucose meter in the ER. 

FDA's in hospital guidance proposes very tight variance standards. There are interesting comments about FDA’s in hospital use guidance posted at diaTribe. I liken the comments to something approximating, "Hey theses are so tough that nobody may make the meters, then what are ya gonna do?" That, combined with the article on emergancy room visit for hypos, I wrote about in this post, are the basis for the following additional comments to the "Prescription Point-of-Care Use" guidance docket. 

Please, feel free to copy them, add you 2¢, and post them to the FDA docket here:

Blood Glucose Monitoring Test Systems for Prescription Point-of-Care Use (this refers to the meters healthcare providers use at the office or in the hospital)

http://www.regulations.gov/#!submitComment;D=FDA-2013-D-1445-0001

[Copy]

I am concerned the proposed standards for "Prescription Point-of-Care Use" blood glucose meter may not be not feasible. If so the the result could be a deterioration of in-hospital care for people with diabetes. 

Dr. David Sacks of NIH, Bethesda, MD is quoted by diaTribe saying, “These are incredibly stringent [standards]…I hope that the FDA listens to the complaints, because clearly there will be lots… I think that it’s going to be very difficult for manufacturers to meet these criteria. If they don't make them more lax, there will be no glucose meters approved in the future.”1 

“No glucose meters approved in the future,” is very concerning. 

I worry that if the standard for in clinic/hospital blood glucose meters use is not reachable there will not be devices for inpatient care. No meters may cause delays in emergancy department treatment for people with diabetes. These delays could stem from the need to use slower draw-blood-and-take-it-to-the-lab processes to meet these "incredibly stringent" requirements, as opposed to reasonably rapid finger stick devices in the treatment of patients needing emergancy care. 

Geller et al in a March 10 2014 JAMA article, National Estimates of Insulin-Related Hypoglycemia and Errors Leading to Emergency Department Visits and Hospitalizations, estimate over ninety-seven thousand insulin-related hypoglycemia and errors induced emergancy room visit in the United States annually. Of these 29% result in hospital admission. Additionally "Severe neurologic sequelae were documented in an estimated 60.6% (95% CI, 51.3%-69.9%) of ED visits for IHEs" 2

Time matters, appropriate rapid care is needed to minimize lasting harm from hypos. 

FDA should avoid rules with such possible unintended consequence. Result from this guidance that should be improved accuracy in clinical settings from meters. Maters are a valuable tool in professional care setting just as patients need for accuracy in dosing the very dangerous drug insulin outside the is clinical setting. Both need accurate, economical  and timely devices. 

I agree with diTribe’s conclusion on personal use meters, “We are glad to see the FDA trying to improve glucose meters and look forward to formal adoption of the standards in whatever form they ultimately take... the home use accuracy standards are fairly reasonable and should enhance patient safety.”  I also share their concern that if, “... no meter can meet these new accuracy requirements for healthcare facilities, we will not see any of these innovations make it to the market.”

1 http://diatribe.org/issues/61/new-now-next/3

2 https://archinte.jamanetwork.com/article.aspx?articleid=1835360

[/copy] Go here. [paste]

Moo.

Learn more:
http://theperfectd.com/2014/03/14/moo-moo-moo/
http://www.stripsafely.com/sample-page/guidance/

Type 2 diabetes, I'm Confused.

A good friend said to me, "I don't get where you are with your diabetes. I have heard you say you are type 2, pre type 2 and I am confused."

Exactly. 

I am confused. 

I think that puts me right smack into the middle of the type 2 universe. Confused.

Years ago, at a physical, the GP told me my blood sugar was elevated. Fasting sugar were 108. I laughed. I would kill for my kids fasting blood sugars to be 108. As we talked the Doc said, "You probably know more about diabetes, with two T1D kids, than I do." Maybe,  I probably do know more about living with kids who have type 1 than he does but that isn't what we were talking about. I was confused.

So we talked more.  He referred me to an endocrinologist. It took six months to get in. If this was remotely serious, why the hell does it a half a year to get an appointment? And how do you stay motivated to take action in that half year? Confused. 

The endo was a nice guy. While I was there as much to interview him about being an adult endo for when my kids when they leave Children's Hospital of Philadelphia, as for myself, we talked about my health. We talked about my family history with type 2, that I had come down from 200 to 180 pounds through diet modification, mostly small actions. I told him what my fasting sugars were (hey there are meters all over our house, I was curious.) He said stay the course on diet and work to loose a few more pounds. He said he didn't need any more blood work to know I had type 2 but I didn't need to test fasting blood levels. So keep being good, just a little more of the same, don't test the morning blood sugars, and oh, you are type 2. Confusing.

Since then, I have periodically checked my morning glucose. I became obsessed getting a masters degree in health communication. I ate much better when I was in a nutrition class as part of that program. Much of the nutrition class didn't stick but the idea of looking at meals as a plate did. I try for at least a half plate of green stuff and no more than a quarter of protein. I can do that. But since then I've exercised less and obsessed more as I try to be useful with that degree. Not to long ago I wore a continuous glucose sensor for a week. From it, I know, if I was type 1, I would give myself a larger meal insulin bolus to manage long, slow recovering, post meal spikes.  I have read up on T2D drugs, some I understand, some I don't, some have side effects like weight gain that make it hard to feel successful at controlling health. My numbers are creeping back up. I think, while not perfect, I was more or less successful at what the endo wanted me to do a few years ago.  Yet, I find it really hard, no - almost impossible, to give myself any credit for that success. All I see are the numbers coming back up and feel guilty about and the occasional stress induced Oreo binge.

Yesterday in a meeting, I stared at a muffin off and on all day. I wanted it in all kinds of ways. In the end I didn't eat it. I had a half a plate of green, a little protein for lunch and wanted the muffin. I need help staying successful, not perfect. It's time to do more, more activity, that 'in nutrition class' attention to diet, some kind of meds and mostly I need peers to help take the next steps to be successful. I know this about diabetes - I need help, not to try to go it alone. I'll go back and see the Docs, maybe an educator and be more open with peers.

Maybe I am not so confused.

Thanks for asking. 

Join the Brainstorm Started at #MedtronicDAF

A lot of wonderful and wise things happened at the Medtronic Diabetes Advocate Forum.*

Please help extend an important part of the event beyond the walls of Medtronic and beyond the borders of the USA. At #MedtronicDAF, with Scott Johnson and George Simmons, I helped lead some structured brainstorming. It would be easy enough to report out the results. That could, however, be seen as suggesting the views collected there are the only views on the topics that matter. 

We all know that ain't even close. How about sharing your thoughts?

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

For actual reports on the event see:
Kim Vlasnik at Texting My Pancreas
Catherine Price at A Sweet Life
Kerri Sparling at Six Until Me
Christel Aprigliano at The Perfect D
Sara Nicastro at Moments of Wonderful
Meri Schuhmacher at Our Diabetes Life
Jacquie at Typical type 1
Cara Richards at Every Day, Every hour, Every Minute
Chris Stocker at The Life of a Diabetic
Jessica Collins at Me and D
George Simmons at Ninjabetic


*Disclaimer: I attended as a guest of Medtronic. They paid for jet lag, oceans of caffein, a few beers, a place to stay and local transportation that made me car sick. They did not ask me to write. Nor suggest any topics if I did. They did not ask me to hold back on questions and they didn't hold back on replies to tough questions. My T1D kids are not users of their devices, we have demo-ed some, that did not seem to influence their interest in my thoughts. I try to maintain a friendly relationship with the people there. I feel their primary motivation is to serve people with diabetes through their work. This includes their fiduciary responsibility to shareholders, of which I am not one. For the new proposed guidance: Medtronic has no collaboration, editorial preview or review privilege on anything I say here. And a partridge in a pear tree. 

Ryan Read get a full 2014 Ride

Good news out today for T1D Racer Ryan Reed:

Roush Fenway Racing Announces Ryan Reed As The Driver Of The No. 16 American Diabetes Association Drive To Stop Diabetes SM Presented By Lilly Diabetes Ford Mustang For The 2014 NASCAR Nationwide Series Season

Concord, N.C. (Oct. 11, 2013) -- Roush Fenway Racing (RFR) announced today its partnership with Ryan Reed and the American Diabetes Association Drive to Stop Diabetes SM campaign, presented by Lilly Diabetes. Reed will drive the No. 16 RFR Ford full-time in the 2014 NASCAR Nationwide Series season, competing for a championship and rookie-of-the-year honors. Reed, a NASCAR driver making his dreams come true while living with type 1 diabetes, collaborated with the American Diabetes Association for the Drive to Stop Diabetes SM campaign in 2013, driving for RFR in a limited schedule.  

It also was announced today that Lilly Diabetes has joined the campaign. Lilly, a leader in diabetes care since 1923, will be part of three NASCAR Nationwide Series races in 2013, Charlotte, Phoenix and Homestead and the entire 2014 season.

http://drivetostopdiabetes.org
http://www.lilly.com
http://www.roushfenway.com

 

 

 

Tom Hanks goes on Letterman and talks about type 2 diabetes and I was watching Colbert.

Tom Hanks on David Letterman

Click to see video on CBS

http://www.cbs.com/shows/late_show/video/alwf0e1mnCxdCU0NJnIuofYhoXDcCf44/david-letterman-tom-hanks-type-2-diabetes/

Tom's conversation with Dave is an opportunity to talk about type 2 without the association of the obesity blame game. Tom Hanks is not the picture of obesity in America. More he is literally the picture of how typical Americans views themselves. A star. An Oscar winning, motion picture everyman.

He (like a lot of us, including me) has faced elevated glucose for an extended period of time (aka pre-diabetes). For Tom, those blood sugars have progressed. That is what T2D does. It progresses. Let's not blame Tom (and by extension every T2D) for that progression.

He has been aware, has worked with his physician to slow the progression to a full type 2 diabetes diagnosis to years - decades. Still those blood sugars have progressed. Tom had the courage to stand up and say Doc, your weight loss suggestion isn't realistic so, "I'm gonna have Type 2 diabetes, because there is no way I can weigh as much as I did in high school."

This isn't Tom failing and being T2D. This is him keeping it as just elevated BG, as pre diabetes, for a long time. Then, and with some humor moving, to the next step in the progression.

Also nice to hear Dave say he has had issues with high blood sugars. Here in lies the point. Type 2 isn't just some stereotypical obese person that media can offer up, and we collectively can look down on for not going to the gym. Not some imaginary fatty (who isn't 'us') to blame.

Look at Dave and Tom as the new poster boys of pre-diabetes and T2D. Think decades of talking with a physician about type 2 and working to slow the progression. If and when it does progress to type 2 diabetes, blame the rat bastard diabetes and honor the success of the patient, like Tom, who for the efforts made to keep it as elevated BGs and slow his progression to type 2.

I hope Tom can be just successful in the next phase of his progression with diabetes. Be successful working with his care team to do what he can to be healthy. When and if he hits another step, another medication, with the same humor move to the next step confident in the success that slowed the progression to it.

Type 2. It is a disease not a character flaw.

You can judge me for choosing Colbert over Dave, that may be a reflection of character.

Act for People with Diabetes.

Hey it is video day! We are joining with Kerri at SixUntilMe and sharing a videos today encouraging actions on diabetes.





Sign the petition: 
http://www.change.org/petitions/us-food-and-drug-administration-sponsor-a-patient-meeting-on-diabetes

Join StripSafely:
http://www.stripsafely.com/join/

One of Three

To Perpetuity.

Diabetes doesn't end. This fantastic piece from the Diabetes Art Day collection, by the Gulo family, makes that clear. 

Diabetes is a disease not a character flaw. A disease that 25 million american live with, significantly more than that if the undiagnosed are includes. Some estimates put that 'significantly more' as ONE in THREE Americans.

FDA is is holding patient meetings to provide "a more systematic approach to obtaining the patient perspective on certain disease areas." Diabetes isn't on of them. Let's Change that

1 in 3

diatribe.org/petition

 One in three of us have it and the other two loves someone who does. I have asked FDA for a patient meeting on diabetes. Join me, sign the petition, get two loved ones to sign too.

Be one of three

Come Play!

My friend Scott Johnson won Insulindependence.org’s Athletic Achievement award and I think that says a lot. Scott is into athletics for all the right reasons; joy, sportsmanship, camaraderie, and health. Scott wants everyone he meets to join the basketball game and play for the simple fun of playing. I hadn’t played basketball since the 70s, Scott made me feel welcome on the court. Same with a young kid who was standing there watching the game, Scott handed him the ball and invited the kid onto the game. That is why, for me, he is a role model. Athletics isn’t about self aggrandizement, it isn’t about winning, to Scott it is about joining with others and playing.

play |plā| verb
1 engage in activity for enjoyment and recreation rather than a serious or practical purpose:
2 take part in (a sport):

I am proud of Scott. 

( I am proud of Kerri the Dancing Check too.)

This is not to say I have anything against serious sports. I was screaming like the lunatic I am, when Charlie Kimball’s team won the Indycar race at Mid Ohio. Team. Racing is a team sport with all kinds of different skills contributing to a common effort to make the team's car get there first.

Today, I would love you to join me in some play. I want you to be part of a team, one that needs a lot of players who are willing to do something a little outside their individual and collective “box.” Join the StripSafely Tweet In.

1. Go to the StripSafely Twitter Page, 
2. Find your Elected officials, Listed by State. (Maybe include the Congressional leadership too)
3. Click the Tweet about Meeting Link.

That will send a Tweet asking the representative asking them to send a staffer to the September 9 Diabetes Technology Society meeting. That is easy and it isn’t asking a lot from Congress, just being aware of our need for accuracy.

Some feel that politics is a dirty partisan game, I know others have felt that way. They found that speaking up from principal was not only empowering but could be fun too. Maybe our voice can help reduce  partisanship by not playing that game. Just be real.

Let's make this fun! Tweet the 'stock' message then improvise some of your own tweets, share why accurate diabetes testing matters to you. Be nice, be a good sport, no trash talking, join with others and play. Maybe as a team we can all win the race to more accurate glucose testing.

Lets make this a team effort about joy, sportsmanship, camaraderie, and health. 

New Kind of Mail - With Stamps!

I just put stamps on letter to my Senators, Congresswoman and the President.

Real snail mail letters based on this Sample Letter at StripSafely.com. 

I am asking my policy leaders to send a staffer to the 9.9.13 Diabetes Technology Society meeting. That aide can help my elected officials understand that there is an issue with test strip accuracy.

You can help. You can write too (Hint: Use the sample!) BUT can you find cooler stamps than these Pixar gems?

It is Not OK.

Sometimes, I may be prescient. I know that came as a shock to me too.

Back in 2010 I wrote a piece about medical devices approved by the FDA. In it I joked about the OK Meter saying, “No pretensions of greatness at all. It is just OK.”

Maybe it isn’t so OK.

OK Biotech and Prodigy Diabetes care “Aligned Ownership.” In their announcement they were clear about opportunities with Centers for Medicare and Medicaid Services bidding.

Yesterday Prodigy Diabetes Care was disclosed as the recipient of a FDA warning letter in the FDA press release, “FDA alerts companies to stop illegal sale of treatments for diabetes.”

I strongly urge people with diabetes to read that FDA letter.
http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm360148.htm
In part it says:

Complaint #598 describes an event in which a patient exhibited symptoms of low blood sugar levels after receiving high (260, 169, and 158 mg/dL) blood glucose results when using your firm’s device. Emergency technicians confirmed that the patient had a low blood glucose level of less than 20 mg/dL. The information included for complaint # 598 reasonably suggests that your firm’s device may have caused or contributed to a life threatening injury. An MDR should have been submitted for this complaint.

That said:
Emergency technicians confirmed that the patient had a low blood glucose level of less than 20 mg/dL - And - 

An MDR should have been submitted for this complaint.

That means one was not.

That is NOT OK.

How far below 20mg mg/dl does someone have to go to get a Medical Device Report filed? How much lower can someone go and recover?

 Thanks FDA for the letter.

One question - Does warning mean they are still selling strips to CMS?


If meter accuracy matters to you join the campaign at www.StripSafely.com

#DSMA Live in Philly

Yo! Philly

Youz should be at 'dis t'ing here. Youz hear?  

Caution: Isolation May be Hazardous to Your Health

There are a lot of things that are bad for our health. Some have waring labels. Cigarettes for example, everyone know they are bad for you. So much so that they come with a waring label. One of those labels says:

Ya know what else, “Greatly Reduces Serious Risks to Your Health?”

Community.
Other people.
Not being isolated. 

I am not making this up. In her May 13, 2013 article in the New Republic Judith Shulevitz writes extensively about isolation including how it can affect people at biological levels.

How much so? Julianne Holt-Lunstad mail, Timothy B. Smith , J. Bradley Layton conclude their paper, Social Relationships and Mortality Risk, saying:

Data... Indicate(s) that individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships. The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity).

People living with diabetes know that it can set them apart, make them feel alone. The social stigmas associated with it, that it diabetes the fault of those who have it, doesn’t help.

In Twenty-First Century Behavioral Medicine: A Context for Empowering Clinicians and Patients With Diabetes, David Marrero, writes that, "Diabetes is a challenging condition, both to live with and to treat.” He outlines roles for both family and wider communities in supporting self motivated change by individuals to better live with diabetes.

Marrero makes the need of support starkly clear observing that social isolation has effects on mortality, at the individual level, comparable to smoking cigarettes. Not having a social support system can be as bad for our health as smoking.

Marrero only briefly refers to online opportunities for individuals to find peer support. Gilbert et al more clearly define peer support in their paper, Online Communities Are Valued by People With Type 1 Diabetes for Peer Support: How Well Do Health Professionals Understand This? They offer a wide discussion of the value that diabetes patients see in online communities. They also outline some of the concerns that health professionals have of patients using the internet.

Not all people with diabetes have family or a community that understand diabetes. Gilbert suggests peer to peer patient support is an additional avenues of support that can be effective.

Community helps. Don’t let diabetes isolate us.

I am not suggesting that community takes the place of quitting smoking, being active or loosing weight. I am suggesting that it is part of the mix, as important as other health risks and we need to say so.

Our insurance will not pay for social relationships, our doctor can’t prescribe anti isolation medications but we can create community. Community that is good not only for our individual health but the well being of other too.

Community is a win - win.

Maybe we need labels on strips an insulin.

WARNING: Joining Diabetes Communities Now 

Greatly Reduces Serious Risks to Your Health.

Resources:

Judith Shulevitz, The Lethality of Loneliness, New Republic, http://www.newrepublic.com/article/113176/science-loneliness-how-isolation-can-kill-you#

Julianne Holt-Lunstad, Timothy B. Smith, J. Bradley Layton, Social Relationships and Mortality Risk: A Meta-analytic Review http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1000316

David G. Marrero, Jamy Ard, Alan M. Delamater, Virginia Peragallo-Dittko, Elizabeth J. Mayer-Davis, Robin Nwankwo, and Edwin B. Fisher, Twenty-First Century Behavioral Medicine: A Context for Empowering Clinicians and Patients With Diabetes: A consensus report, Diabetes Care February 2013 36:463-470; doi:10.2337/dc12-2305, http://care.diabetesjournals.org/content/36/2/463.extract

Kate Gilbert,  Sarity Dodson, Marie Gill, and Rosemary McKenzie, Online Communities Are Valued by People With Type 1 Diabetes for Peer Support: How Well Do Health Professionals Understand 
This?, Diabetes Spectrum August 2012 25:180-191; doi:10.2337/diaspect.25.3.180 http://spectrum.diabetesjournals.org/content/25/3/180.full

Accomplishments: Serious and Silly

This week I am joining Karen and many others in D-Blog Week.
Today's topic is, "Accomplishments Big and Small"

Our prompt of Today is: 

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I think one accomplishments in which take pride, and I will leave the evaluation of greatness to others, is this post. I am proud where writing it took me. It is fairly serious and I share another link that is spectacularly silly but related in that I shared with with the same friend I have never met other than in the DOC. 

Bad things happen to good people.

I wrote this for another T1 dad who has had some issues with a church preschool. OK y’all may not recognize me as the author here but what the heck here goes:

Bad things happen to good people. It isn’t God’s will that they happen but part of God’s providence. There is a distinction there that is small but significant.

If bad things only happened to bad people we could easily know who’s evil from there rest. It would be like God showing up in a cloud and tossing about lightening bolts. There would be no question of who was in charge and we would be compelled to believe in that all powerful God.

Now think of God as a parent. Parents want their kids to do OK and to love them back. We all kind of get around to the idea that, the kids have to choose to be OK and love us back for themselves.

God being infinite is infinitely more loving and wise is more aware of this truth than we are. So God is infinitely more motivated to let us, his children, choose to love him by NOT forcing us to do so. In short God keeps us in freedom to choose to love God or reject God because that is how love works. (Every one sing the Sting song, “If you love someone, set them free…” OK enough of that sillieness.)

So what does this have to do with the topic at hand? Lots. First we get what we can handle or more precisely what we can handle with God’s help. We didn’t do anything bad, were not being punished, it is just our at bat, our lot, our thing. It is real hard to keep that in mind particularly, when those piling on the crap are wearing religious garb and projecting that they are all wise and speaking for god. Nope they are just human.

Second, we only get what we can handle, if we couldn’t, if it was going to break us for sure, we wouldn’t get it. That ain’t saying it is an easy load. It is saying we have an even shot. No more, no less, we are in freedom.

Third somehow there is a way to be better for all of it, we have to find the up side of the equation that is keeping us in freedom to come out OK. I am not so sure that I know what that is. If I figure it out I’ll let you know but it is there someplace. Our gig is to find it and do it.

I am coming to feel that there is a community here that may be more than it seems. We are here to help each other with the diabetes thing but the fact is the real issue is how the diabetes thing gets into our heads and hearts. That is more than helping with blousing tips.

It may be that we are here to really reach out and say, “That is wrong. I will stand by you to help you not over react but to act in accordance with what is right.” We can’t change the way Fishville or some church board act and think. We can support each other and in doing so help ourselves on a better path.

So let me say that I empathize with every emotion you are feeling, I know them first hand. The real spiritual issue is not to let what we experience as the shallow hollow self interest of others turn us into them.

Stand up for your child, her mom, her grandfather and her brother. You were put on this path because you can come out of it a better stronger man, father, husband and son. I probably can too. It may well be that you sharing your experience is a way to help me see that it is the same for me.

Thanks for the hand.

Stand tall stand and proud stand up for the children you are God’s chosen advocate for. Do so in away that makes us, them and God proud of you. You have done so so far. I have faith you can continue to do so.

In the long run - it is how we react that counts


This was originally posted as:
http://www.ydmv.net/2007/10/bad-things-happen-to-good-people.html

And now for something completely different

That was a little deeper and really out of character for me. So here is another bit I did for the same guy far more in the public character of us both. I am just about as proud of this which should be proof that I am, at best, an adolescent at heart. Here is an excerpt, the full long link follows:

BadShoe: And you don't know the peoples’ names?
Brensdad: Well I should.
BadShoe: Well then who's on NPH?
Brensdad: Yes.
BadShoe: I mean the kid’s name.
Brensdad: Who.
BadShoe: The guy on NPH.
Brensdad: Who.
BadShoe: The NPH kid
Brensdad: Who.
BadShoe: The guy using...
Brensdad: Who is on NPH!
BadShoe: I'm asking YOU who's on NPH.
Brensdad: That's the kid’s name.
BadShoe: That's who's name?
Brensdad: Yes.
BadShoe: Well go ahead and tell me...

It go on and on at: http://www.ydmv.net/2008/07/not-that-abbott.html

Hang Together, Not a Check Box

This week I am joining Karen and many others in D-Blog Week.

Today's topic is, "We the Undersigned." 

Our prompt of Today is: 

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

Hang Together.

Petitions need to be a call to action not a check box. 

Consider the most prominent of all American petitions the Declaration of Independence. The people who signed that were committed to action. It was an act of treason against mother England. We all know Ben Franklin’s, “We must all hang together, or assuredly we shall all hang separately.” Think about that, this wasn't a casual thing, clearly it was outside the signors comfort zone. 

Signing meant the risking being hanging by the British if captured. That is not an understatement . The signors had more than a little skin in the game. These days signing a petition often is little more than a Facebook like. I am not sure there is any lower common denominator of approval than that a Facebook like and that many petitions are at best only tiny bit more than that. 

I think we need skin in the game. A willingness to give some kind of effort towards the change that petitions seek. To do so means we have given a little more than a quick glance at the matter and are willing to actually be involved in what ever revolution we are signing up for. 

So I am all for a petition that is not so much signed as a movement that is joined. Here is a cause to think about joining: Look at the amounts invested in research per patient for AIDS, Breast Cancer and Diabetes. This chart is from my friend Manny who got the numbers here. 

Sure it is fun to click away to petition for funding a Death Star. If we are going to petition let it be more than a silly click and be about something meaningful. Research is something for which the diabetes community should “petition the government for a redress of grievance.”  If that last bit sound familiar, it come from Franklin’s day. Written by people that know what a petition was, it is the last line of the First Amendment to the Constitution. 

Let do something not just click something.