DSMA Blog Carnival: Get the Diagnosis!

Type 1, Type 2, LADA, Gestational, diabetes brought on by surgery . . . . the list of types of diabetes goes on.  Each type may have differences, but ultimately they are all diabetes.  When we think about it, there is a whole lot that all types have in common.  However, that doesn’t mean we can’t give credit for some differences too.  So lets look back to our “Breaking down the barriers between types” chat on September 10th and discuss . . . . .Anything easy about living with your type of diabetes that isnt easy for another type?

Laddie_Head SquareNothing like pushing the deadline for the October Blog Carnival by waiting until today to write my post. I could muddle on forever talking about the differences between the types of diabetes, so I have selected one area in which Type 1’s often have an easier time than people with Type 2.

And that area is Insurance. In general Type 1’s have an easier time than Type 2’s getting test strips and devices like pumps. Medicare’s standard allowance for test strips is crappy for everyone, but non-insulin users are only allotted one test strip a day. Insulin users (and that includes some Type 2’s) get 3 times as many with 3 per day. Still inadequate, but with documentation and proof of medical necessity from a doctor, overrides are available.

Pumps are easier for people with Type 2 to get than in the past, but there are definitely a lot of hoops to jump through to get coverage.  A diagnosis of Type 1 diabetes is often sufficient for automatic pump coverage under many insurance plans. My first pump was approved by insurance in less than 24 hours. When I get to Medicare in 2.5 years, I will be required to have a c-peptide test to prove that I don’t produce insulin. I have been worried about that test but when I asked my endo if I should be concerned, she just laughed.

Continuous glucose monitors are almost impossible for Type 2’s to get insurance coverage for. Under my current insurance, the first mandate for CGM coverage is “Type 1 Diabetes.”

Often I read forum posts by adults who have been diagnosed as having Type 2 diabetes because of their age when they clearly have characteristics of Type 1 or the newer diagnosis of LADA.  Occasionally someone will reply to them that it doesn’t matter what type they have as long as they are being treated properly. I disagree with my statement. I know that I have always had good insurance and I am not a Medicare or insurance expert, but if you are Type 1, you want to be diagnosed as Type 1 not Type 2.  Although many doctors are starting to use the LADA diagnosis, there are currently no Medicare or insurance codes for that. So for insurance reasons, if you are LADA, you are Type 1. Get the diagnosis so you can get the care and devices that you need.

Get the DiagnosisDo people with Type 1 diabetes have better insurance coverage because our type of diabetes is worse?  Well, maybe yes. All types of diabetes are the “bad” kind, but Type 1 is flashier bad. We wear the costume of “cute little kid” even though we can be anything from an infant to an 80- year-old crotchety old guy. We pass out at inopportune times and occasionally scare the crap out of everyone with seizures. Our BG numbers can range from 30-450 in a single day and we don’t consider a jump from 100 to 110 in fasting BG to be significant. Without insulin we could die in a couple of days or weeks. In general Type 1 is more dangerous in the short run and yes, we need pumps and CGM’s more than most people with Type 2.

But Type 2 is a subversive and sneaky kind of diabetes. You may not get access to the fancy devices, but if you ignore your diabetes, you can get the nasty complications. Insurance will pay to treat your complications even if it won’t help you prevent them. So don’t ignore your diabetes. You have the bad kind too!

This post is my October entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at:  http://diabetescaf.org/2014/10/october-dsma-blog-carnival-4/

A Thank-you Note to Laura C.

Laddie_Head SquareDear Laura,

We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.

I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.

But Nightscout is not what this letter is about.

I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.

Today I write to thank you for your closing remarks on DSMA ‘Rents:

“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF-  None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.”   (Loc. 55:07)

In the last year and a half, the issue of Medicare CGM coverage has moved to the front page Dear Laura Cof DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.

But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.

So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.

Sincerely yours,

Laddie Lindahl

Test Guess and Go

If you have not previously contacted your Senators
and U.S. Representative to support CGM Coverage
by Medicare, please click here to go to the
JDRF page that contains links and easy-to-
follow instructions to have your voice heard.

Playing Nice in the DOC Sandbox

Laddie_Head SquareI try to be open-minded when it comes to my online/offline interactions with people affected by diabetes. On one hand, I can be as snarky and self-centered as anyone. On the other hand, I have learned that being kind and supportive gets easier with practice and soon becomes a very nice way to lead one’s life. I have definitely had good role models in the DOC and I thank you all. I am also old enough that I have learned that there is no right answer to every question and no guarantee that doing the “right” thing will guarantee good results. So I try to be understanding of other people and usually I succeed.

Last weekend I unwittingly became the the central character in an unpleasant diabetes online experience. Neither the group nor subject is important. I have pretty thick skin and was more stunned than hurt by the barrage of comments. I suppose one problem with the Internet is that although you can control what you write, you can’t always control how your words and intent are received. I don’t pretend to be perfect and am willing to accept responsibility for my missteps although I still don’t quite understand what happened.

I’ve spent a fair amount of time this week thinking about my responsibilities as a member of the DOC. I had a recollection that some blogger once outlined behavior suggestions for the diabetes community. The few longtime DOC bloggers whom I asked about this didn’t think that such a thing existed. Chances are that I once read an article about general online etiquette and that stuck in my mind.

Whenever you have interpersonal problems, I think that the best thing you can do is take a deep breath and reread Robert Fulghum’s list of things to be learned in kindergarten. It always makes me smile.Kindergarten Rules_3

Now that we’re feeling all warm and cozy, let’s consider the DOC and whether there should be a code of conduct. The bloggers whom I recently contacted and the DSMA Tweet Chat of 9/3/14 were unanimous in the opinion that there should be no rules for the diabetes online community. According to one writer, rules would go against the “organic flow” of the community. I think that means that we’re an opinionated and rowdy bunch who have a modicum of common sense along with compassion and mutual respect. But when all is said and done, a few rules did come out of the discussion.

Here you go, DOC Friends!  (with special thanks to K-bloggers Kerri, Kelly, and Kim)

DOC Rules

And I’m going to add one more:

4. If someone screws up, give them the opportunity to learn and then forgive them.

If four rules are too much for you to deal with, just go with #3.

Don’t be a Jerk Face.*

That covers just about everything.

* a descriptive term that only Kerri could think of

Monday Miscellany

Laddie_Head SquareThis post is a mixture of important and not-very-important stuff.  If you’re like me and getting tired of ‘heavy” and “try to change the world” issues, you might want to just read the last section which deals with autumn colors and burned-out lightbulbs. November is coming soon and I need to re-energize myself when it comes to diabetes advocacy.  I will — because diabetes never takes a vacation.

Diabetes Related:

Big Blue Test LogoThe Big Blue Test begins today and continues until November 19.  This is a program of the Diabetes Hands Foundation where people are encouraged to exercise for at least 14-20 minutes and log the results at the Big Blue Test website. People with diabetes need to test their blood sugar before and after the exercise session. Those without diabetes just log their exercise session. Each logged test raises $1 to support diabetes programs in the US and the Dominican Republic (Learn about the 2014 grant recipients.)  The Big Blue Test is an easy and meaningful way to advocate for people with diabetes. Join me and start participating!  (BTW-If you use mySugr, you can participate in the Big Blue Test as one of the challenges. My monster is hyped and ready to go!)

FDA Blue CircleThe hashtag #DOCASKSFDA has been everywhere in the diabetes online community recently. On November 3, 1-4pm EST, the FDA will host a live webcast that will feature a panel of people with Type 1/Type 2 diabetes along with representatives from ADA, JDRF, and diaTribe.  Please fill out the short survey created by diaTribe to share your thoughts on important concerns for people with diabetes.  The survey deadline is tomorrow, Oct. 21, so don’t delay.  Your voice is important!  You can learn more about the virtual conference at diaTribe.

Medical Not Diabetes:

CupcakeMost of us try to live a healthy life. Yeah, we make some bad decisions but we also do a lot of things right.  I always think that it is funny how many of us share photos of post-doctor appointment cupcakes.  Why do we work hard to prepare for medical appointments and then revel in “forbidden” treats afterwards?  Are we just being healthy to impress our medical professionals?  Beats me, but I always feel the need to “reward” myself after a stressful appointment or lab test.

I missed the cupcake craze so my reward used to be chocolate-covered donuts. I always swoon over these tasty treats as I walk past the donut case at my local Holiday Stationstore, but I have learned to resist them. (I have tons of other things that I can’t resist, so I’m not being overly virtuous here.)

On Friday morning I had a lab test as a follow-up to my annual physical in September. Internet searches indicated that the rogue result in September could range from meaningless to cancer. I was worried. I stopped at Holiday on the way home from the test and purchased a Diet Coke instead of donuts. I have been working hard to reduce the presence of dark sodas in my life, so Diet Coke is on my try-to-avoid list.  (Can you believe that I am still friends with Scott Johnson!!!)  I have to admit that I don’t like Diet Coke all that much any more, but I still buy it because it has such happy and friendly memories for me.

I got a call from my doctor’s office in the afternoon and fortunately my test was completely normal.  The nurse who phoned indicated that they didn’t want me to worry about the results all weekend.  My doctor earns an A+ grade for understanding how long a weekend can be when you’re worrying about medical issues.

Life Stuff:

Lamp to Repair_SquareSo far I have not had a great experience with long-lasting power-saving lightbulbs.  My latest glitch was the rattling and sizzling demise of a $15 lightbulb.  I put in another bulb and it died in a day or two. Being the electrical whiz that I am, I determined that I needed to replace the burned out socket in the lamp.  A trip to the hardware store, a new socket, and a $20 LED bulb solved the problem. The new bulb is advertised to last 22.8 years and ultimately save me $231. I’ll be 84 years old when it bites the dust (unless it’s like the old one which only lasted a month).

Autumn Colors SquareMid-October is a colorful time in Minnesota.  This photo was taken late last week on an early morning dog walk.  Unfortunately strong winds and cold temperatures have resulted in a blanket of beautiful leaves in my yard. But one good thing: Raking counts as exercise for the Big Blue Test!

A Bliss Point for Diabetes?

Laddie_Head SquareWhen it comes to junk food, the “Bliss Point” is the “just right” amount of sugar, salt, and/or fat that optimizes our taste and cravings for that food.  If you have doubts about whether the manufacturers of junk food have invested tons of money in the science of addiction, read the 2013 New York Times Magazine article titled The Extraordinary Science of Addictive Junk Food.

In economics, the “Bliss Point” of consumption is that point where any further increase in consumption would make the consumer less satisfied rather than more satisfied.  Maybe owning ten cars makes me deliriously happy while adding an eleventh overburdens me with the worry of  driving and maintaining so many vehicles.

The notion of a bliss point assumes that there is a point of optimization for many of the decisions that we make on a daily basis. My bliss point on salt might differ from yours and you may like your food sweeter than I do. But studies by marketing researcher and psychophysicist Howard Moskowitz have shown that large populations can be sorted into preference groups and products marketed to them accordingly.

I think that it makes sense to think about a bliss point when it comes to diabetes care. On one hand we like to think that we have total power of choice when it comes to consumer products. Therefore it is a stretch to compare the purchase of potato chips to the daily minutiae of diabetes.  After all, none of us invited diabetes into our lives and we often feel that we lack choice in how we deal with this unwelcome intruder. However, I believe that each one of us with diabetes could probably describe an optimization point of self-care where our daily BG numbers, A1c results, and risks of complications are balanced by somewhat acceptable levels of diabetes intrusion into our lives.

Now I am not beginning to suggest that it is easy to hit the bullseye of this hypothetical bliss point.  Diabetes is hard and some days we are dealt a losing hand in controlling the huge numbers of factors that influence blood sugar.  (In the August 2014 issue of Diatribe, Adam Brown listed 22 things that affect blood glucose and admitted that it was an incomplete list.)  But in general I am happiest when my A1c, range of low/high BG readings, and number of chocolate-covered donuts are in a certain range.  It is a balance of working hard while accepting my daily transgressions along with the uncontrollable BG excursions that come with Type 1.  I know that I could probably get a better A1c, but I think that I have hit the point where a better A1c might not be worth the disruptions and sacrifices in my life that it would require.  So maybe I am living close to my diabetes bliss point.

Because the bliss point differs for each of us, I might feel satisfied with test results that are higher than yours because my goals are different that yours.  I might be thrilled to have an average BG of 175 over the last 60 days because six months ago my average was 235.  I might be appalled at an A1c of 6.0% because my last one was 5.5% while you might rejoice at a 6.5% because it is the best result that you have ever had. You might find it acceptable to eat low carb a lot of the time and I am unwilling to give up favorite foods and the social aspects of restaurant eating.  I think that we could all agree that we neither want an A1c of 10.0% nor do we want to spend 100% of our life thinking about diabetes.  Somewhere between those extremes is a spot where we have settled. Maybe it is a good spot or maybe we want to change it.

Bliss Point Graphic

My best days with diabetes are when it lives quietly in the background. I don’t ignore it and I certainly take my insulin and test my BG.  Every so often I have a magical morning playing golf when I don’t hear a peep from my Dexcom for several hours. It’s not that I choose not to look at the CGM, but I feel so incredibly good that I totally forget about diabetes. What is interesting to me is that a retrospective look at my Dex for those rare mornings indicates that my BG usually hovers around 110-125 and it definitely stays within my programmed 70-140 range.  My perfect golf mornings start making me think that my bliss point might be somewhere around 120 and make me question whether my current daily goals are too tight. Having had Type 1 for 38 years, I have no illusions that an increase or decrease of 0.5% in my A1c will make a difference in my health. So this is definite food for thought. (Of course I have never been able to figure out why some golf mornings are perfect, others leave me munching an entire tube of glucose tabs, and others require multiple boluses to keep my readings out of the stratosphere….)

One reason that I have been thinking about optimal diabetes targets is wondering how an artificial pancreas would influence my life.  Many trial results for the bionic pancreas have mentioned that average BG levels for trial participants seem to cluster around 130-140 which approximate A1c’s of 6.2-6.5%. Those numbers are a long ways from the normal BG of 83 (A1c of 4.6%) that Dr. Bernstein espouses. However for the vast number of people with Type 1 diabetes, those numbers would be a huge improvement with the added bonus that hypoglycemia and high/low swings are greatly reduced.

But there are others (myself included) for whom this would result in a worsening of average BG numbers and A1c’s.  This is where the idea of a bliss point comes into play.  What is it worth in worsening BG numbers to eliminate most of the mental and daily-task burden of diabetes? Also, would my health actually be better if most lows and Himalayan BG swings were eliminated despite having a somewhat higher A1c? Interesting questions for sure.

Since one definition of “bliss” is “supreme happiness”, I think it is accurate to say that the only true bliss point for diabetes will be The Cure.  I don’t expect to see that in my lifetime.  At 2.5 years away from Medicare, I don’t even expect to benefit from encapsulated beta cells or an artificial pancreas.  But I think you younger Type 1’s will and that is exciting.  My hope for my old lady years is that Medicare will begin covering CGMS for seniors and that I will remain in good enough health to be the decision-maker for everything related to my diabetes for a long, long time.

JDRF One Walk Manhattan 2014

This post is a little dated because I have been on the road and decided to wait until I got home to add the photos and publish my story.  Last Sunday I got the opportunity to walk across the Brooklyn Bridge while supporting JDRF.

My youngest son lives in New York City with his wife and almost one-year-old daughter.  In general I hate New York because I am a suburban girl at heart and get claustrophobic being around all the people and crammed-together buildings. But one night in early summer I saw a post by Alecia of Surface Fine mentioning the JDRF One Walk Manhattan 2014. Before I knew it, I had signed up and pledged to raise a certain amount of money and walk with Alecia’s Stem Cells team.

A little background here. I grew up on the East Coast and have been in and out of NYC most of my life.  But I have never really liked it.  I hate the crowds, I hate the filth, and most especially I hate the smells.  Somehow I managed to have a child who loves New York, moved there after college, and has never left.  Usually we see him when he comes to Minneapolis for family visits, holidays, and friends’ weddings. My husband occasionally has business in NYC and meets him for dinner.  Now that my son is a father, I have pledged to visit him and his family occasionally rather than always make them come to my part of the world.

More background. When my darling granddaughter was born last October, I flew out to NYC to do my best to be helpful. Previously I had “met” Alecia online through Twitter and then her blog. I had also purchased one of her 2013 Alecia’s Stem Cells T-shirts because it was such a great design. So with no fear I emailed her to see if she would like to meet for lunch or a drink. In typical Alecia-style, she replied quickly and suggested Saturday brunch.  We enjoyed our visit and found that we had a lot in common.  Although I am a generation older than Alecia, we have both had Type 1 for over 35 years and we use Animas pumps and Dexcom G4 CGM’s.  Since our first meeting a year ago, we have continued to keep up with each other in typical DOC-style with occasional Tweets, emails, and blog comments.

Alecia is an avid JDRF supporter and this was her 15th Walk. Alecia’s Stem Cells team raised over $37,500 this year. Rather than recreate the wheel, I’ll share Alecia’s summary of the fantastic 2014 walk:

We had Walkers this year from NY, NJ, PA, IL, and MN.  We had our largest Walk team ever. We had friends and family from the very first Alecia’s Stem Cells team in 2001 and first time walkers who’d never been across the Brooklyn Bridge.  We had a grandmother who’s T1D, a 40-something T1D (me), a 20-something T1D and a 8-year old T1D.  The team may carry my name, but we were walking for ALL of us. Alecia’s Stem Cells was announced as one of the top 5 fundraising teams for the JDRF NYC.  We ran out of yellow ASC team ONE to NONE shirts and even had some walkers in the grey shirts from our online fundraising sale last month. Simply put, it was AMAZING adventure this year. 

I am especially glad that I joined Alecia’s walk this year because on Sunday afternoon she announced that this was the last walk for Alecia’s Stem Cells.  She has decided to challenge herself by joining the JDRF’s endurance sports program and begin training for one of the 100-mile bike rides in 2015.

One thing that I know about Alecia is that whenever she tackles a project, she always gives 110% and doesn’t quit until she succeeds.  I look forward to seeing which ride she chooses and I promise to support her with a donation.  Although I was happy to cross the Brooklyn Bridge with Alecia, I can say with absolute certainty that I will neither accompany her on training rides around Manhattan nor join her for a 100-mile ride!

Here are a couple of photos:

With Alecia at JDRF One Walk Manhattan 2014

With Alecia at JDRF One Walk Manhattan 2014

JDRF One Walk Manhattan 2014 is a family affair

JDRF One Walk Manhattan 2014 is a family affair