Celebrating Tom Beatson

Laddie_Head SquareYesterday Tom Beatson of Phoenix, Arizona celebrated his 72nd anniversary of living with Type 1 diabetes. I’ve been lucky to get to know Tom in recent years through Valley Pumpers, an insulin pump support group that I attend during the winter months in Arizona. Many people in the diabetes community know Tom through Facebook and other online venues. He’s an incredible guy who is always kind, inspirational, smart, and opinionated. Tom has participated in the Joslin 50-year Medalist Program and supports diabetes research through the Joslin Diabetes Center.

If you’d like to learn more about Tom, check out this TuDiabetes interview from January 2013. In this video he and Richard Vaughn (diagnosed in 1945) discussed living with Type 1 diabetes for over 70 years.

Below you will find Tom’s story as he shared it in an email and on Facebook yesterday. I asked Tom if I could post his statement and photo here today and he graciously gave me permission.

With no further ado, here is Tom Beatson in his own words:

“Today is my anniversary. Exactly one year after Pearl Harbor was the first day I was sick with T1D Type 1 Diabetes. I was 10 years old.  Two days later Dr. Wright made a house call and decided I needed to be in the hospital. Since my mother didn’t know how to drive, Dr. Wright drove me and my mother to the hospital in his car. Shortly after arriving at the hospital I lapsed into a coma. Of course, insulin saved my life. I don’t have any records or recollections by my parents, but I think I was comatose for several days, and remained in the hospital for a month. That was 72 years ago, in 1942.

Lots of people have asked me how or why I have survived through all these years.  I don’t have a magic answer for you.  I take one day at a time and do the best I can. It’s been pointed out to me that I have a lot of determination, and that has been very helpful.

Another thing that has been helpful is exercise. When I was about 45 I started riding a bicycle and did that for 35 years. During those years I accumulated 106,000 miles. I have stopped riding currently because of soreness in my lower back, but hope to resume bicycle riding.

Back in the 1940s the insulin pump hadn’t been invented yet, so I used shots every day  for 52 years. That was long enough to earn me a 50-year medal. Then in 1995 Dr. Levy started me on the insulin pump. My control has been much TJB 11-9-14 at 7.26 PMbetter using the pump. I am currently on my fourth pump – the Animas Ping. It was preceded by the Cozmo, 508, and 506. Since I’m on Medicare, they won’t approve a CGM. Their rules are not medically sound. My daily dose ranges between 35 and 45 units of Humalog insulin.

Since I am already 82 I’m not very optimistic about seeing a cure within my lifetime. But I’m keeping a close eye on the Bionic Pancreas that Dr. Ed Damiano is working on at Boston U.  His goal is to get FDA approval by 2017, and that’s when I reach 75 years of T1D, so I’m hoping to be able to get a Bionic Pancreas in time for my 75th anniversary.

Unlike some of you who still claim no complications, I’ve been dealing with retinopathy for 50 years. It remained background until about 10 years ago, when one eye became proliferative. And I’ve got kidney problems. But I have no neuropathy and no gastroparesis. My hearing is still good.  I’ve had chronic lymphocytic leukemia for 20 years with a white cell count around 60,000 but it never gets high enough for them to treat (80K). And I have colitis.

What was the biggest mistake of my life?  I never got married, and have lived alone for more than 50  years.”

Thank you, Tom, and best wishes for many more years of good health with Type 1 diabetes. I’ll give you a call in three years and see how you like your 75th Anniversary gift of a Bionic Pancreas!

What I Listen To

Laddie_Head SquareI spend a lot of time walking. For years and years I listened to music on every walk. First I had a Walkman tape player and FM radio, then a CD Walkman followed by my son’s old Dell DJ. I followed with a succession of iPod Nanos, an Android phone or two, and now an iPhone. The type of music I listen to hasn’t changed much from device to device and I enjoy rock, pop, country, classical, alternative, jazz, and show tunes. My iTunes library also stores much of the music that my young grandchildren listen to. Therefore when I listen to songs on the shuffle setting, I am apt to move from John Mayer to the Messiah to Cookie Monster and Big Bird.

My listening habits changed significantly in early 2013 when I started listening to DSMA Live, a podcast about diabetes produced by DCAF (Diabetes Community Advocacy Foundation). Abby the Black Lab introduced herself to Test Guess and Go readers in May 2013 and explained the hows and whys of our DSMA walks. It took six months and 447 miles of walking to listen to the entire archives of DSMA which was at that point 149 shows. Almost two years later I still listen to every DSMA show although I have long since lost count of how many episodes there have been.

Once I became current with DSMA, I had to find something else to listen to. All of a sudden music became boring while I walked and worked out and I was much more interested in podcasts. Currently these are the podcasts I listen to regularly:

DSMA Live: On iTunes you’ll find all three of the DSMA podcasts (Live, ‘Rents, and en Vivo!) under the umbrella of DSMA Live. The accompanying iTunes description indicates that the aim of these interviews and discussions is to “empower, connect, support people affected by diabetes.” You’ll definitely learn everything you need to know about diabetes news and the people in the diabetes online community by listening regularly to these programs.

Just Talking:  A weekly podcast by Chris Snider in which he interviews guests about various topics such as diabetes, Medicine X, and video games. Chris’ interviews are unscripted and he describes them as “free-flowing but with a purpose.” His guest list is diverse and the show is always interesting.  Because my fascination with video games ended in the 1980’s on about Level 5 of Super Mario Brothers, I tend to skip the video game episodes. His podcast earlier this week was an interview with Amy Tenderich and three scholarship recipients from the recent 4th Annual DiabetesMine Innovation Summit.

NPR: TED Radio Hour:  Each week’s show has a theme and incorporates portions of relevant talks from the TED (Technology, Education, Design) Stage and interviews with Podcastssome of the speakers. Titles of recent shows have been The Source of Creativity, the Balance within Us, The Edge, and The next Greatest Generation?. The topics are always interesting and this podcast exposes me to lots of ideas and subjects that I might otherwise know nothing about.

Recently Added

Good Mythical Morning (Audio only): I learn a lot from Katy at Bigfoot Child Have Diabetes. Some of it is important and some of it is a bit odd, but oddness is the spice of life. Along that lines I was introduced to this show in Katy’s blogpost yesterday titled “Will It Pumpkin Spice?”  She provided a link to comic duo Rhett & Link’s YouTube video of the same title. I don’t know whether the audio-only version of their show will be as funny as the YouTube videos, but it’s worth a try.  How can you not want to listen to podcasts such as “Making a Dog Yawn”, “Facon Bacon Taste Test”, and “Wrapping a Cat for Christmas”?

Recently Deleted

NPR: Car Talk: I have no interest in cars but have listened to Tom and Ray Magliozzi, (aka Click and Clack, the Tappert Brothers) discuss cars, interpersonal relationships, and life in general for years. The show is no longer in production and Tom Magliozzi passed away in November 2014. An episode from the archives is released every week on NPR and the humor is timeless. Warning: you might embarrass yourself in front of your neighbors as you walk down the street laughing out loud at this podcast. Because I have listened to the show for so many years, I decided to take a break. It’s still a favorite!

NPR: Wait Wait… Don’t Tell Me!: This is a weekly comedy show camouflaged as a current events quiz. It can be very funny but I got tired of the same format week after week. So it’s off my list for now. However, the two guests last week were Itzhak Perlman and Amy Schumer. That episode might be worth a listen.

The Atlantic Voice:  The subtitle for this podcast is “3000 Miles of Opinion” and features Eric and Zeff, one who lives in the USA and the other in Great Britain. I found it engaging for a while, but not enough to keep me from exploring other options. After all, there is only so much time to listen to podcasts every week.

I use iTunes to search for and subscribe to podcasts. It’s easy to do and my selections magically show up on my iPhone. I’m sure that Android users have a similar way to do this, but I am an iPhone user because I don’t want to have to figure things out….

I am always open to trying out new podcasts. If you have a favorite, please share it in the comment section.

The Vibe is Approved!

Laddie_Head SquareThe Vibe is approved.

I say “Finally!” but I say that with excitement not grouchiness.

Kerri of Six Until Me has a sponsorship relationship with Animas and shared the news this morning on Facebook. Rather than have me repeat her words, check out her blogpost here.

I will definitely upgrade to the Vibe once I learn the details of the ezAccess Upgrade Program. When I purchased my Ping two years ago, I was guaranteed a $99 upgrade fee to the Vibe when it was released. I didn’t think that this pump/Dexcom combo would take so long to come to market and I might have purchased a different pump had I known the wait was going to be so long. On the other hand, I don’t know what pump I would have purchased instead and I am glad today to have the option of ordering the Vibe.

Although I am not as excited about the Vibe release as I would have been a year ago, there is no risk for me to upgrade. I previously wrote that the Vibe will not have the recent Dexcom software upgrade. I have also worried that the small Dexcom screen might not be big enough to  show my Dexcom graph clearly and I am concerned about the difficulty of seeing the Vibe screen in the sunlight. The Dex receiver doesn’t perform well in the sunlight either, so that is probably a toss-up. If I don’t like how the Vibe works with my Dexcom, I can just disable it on the pump and go back to using my receiver. Or my understanding is that I can use both devices simultaneously. So no risk.

The Vibe will also get rid of my biggest dislike of the Ping because the recommended bolus will self-populate rather than make me scroll up to it from zero. Huge improvement!  People who use the remote meter with their Ping may have to thing twice about upgrading to the Vibe because my understanding is that the new pump will not have this feature. I do not use the remote so that is a non-issue for me.

As you know, I have been one of many people working to have Medicare approve CGMS for seniors. If that does not happen by the time I get to Medicare, the Vibe eliminates the need for a CGM receiver and that will save me money. However, I don’t think it is known whether the Vibe will be covered by Medicare and the ezAccess Upgrade Program brochure states that “Medicare patients are not eligible for ezAccess.” Because I am still using private insurance and my Ping is in warranty, I am eligible at this time and I can wait to see how it plays out with Medicare.Vibe Upgrade

So this is an exciting day and I look forward to my upgrade to the Animas Vibe.  Although I struggled with the Medtronic Sofsensors, I really liked my years of having my CGM integrated with my pump. I like having one less thing to carry.  And I like having my CGM attached to me with the tubing of my pump. I have never permanently lost my Dex receiver, but I always worry about it. I also like that my cgm receiver will be integrated in a waterproof pump.

Click here to read the news release.  It indicates that the pump will start shipping in January 2015. Once again, thanks to Kerri for sharing this link on Facebook:-)

I was able to order my Vibe this morning by calling the Animas
number 1-877-937-7867 and pressing Option 3. I spoke briefly 
with one agent and was then transferred to another representative
who helped me with the upgrade. Just so you know, I will actually
be charged $799 for the upgrade and receive a $700 credit when
my Ping is returned. So the final cost of the upgrade is $99. For
fun and excitement, I ordered my Vibe in blue.

The Grouch is Back!

Laddie_Head SquareTwo weeks ago I wrote a grouchy blogpost about my frustrations with diabetes devices. Things got a little better for a while, but today THE GROUCH IS BACK!

I am sitting here with a high BG that is 99% likely the result of an infusion set change earlier today. I find that no matter what kind of set I use, I more often than not get highs after insertion. I have a grab bag of tricks that I use to avoid the rise, but none of them worked today. I finally gave up and inserted a new set.

These problems are not the fault of my pump, but they are the fault of an insulin system that makes me utterly dependent on the short-acting insulin delivered by my pump. Why should I have to accept high BG numbers for 4-6 hours every three days? I hate these “blameless” highs. I ate a small breakfast today followed by a 3-mile walk. Then I changed my infusion set and my BG climbed from the 80’s to the mid 200’s in the next couple of hours. If I’m going to have a snarky high, I should at least get to have a cupcake or a chocolate-covered donut.

My Dexcom G4 was not an innocent bystander to this mishap. In fact it was continuing its 2 month vacation from accuracy. Because I felt good and the Dex showed my BG to be level, I didn’t test after breakfast until late morning. I was surprised to see a BG of 181. It didn’t make sense so I tested again: 180. I took a correction bolus and calibrated the Dex which was off by 75 points. I was well up in the 200’s before my BG began to fall as the result of several correction boluses and the new infusion set. When my BG finally started to drop, I gave the Dex an extra 30 minutes to see if it would react. Not even close and I recalibrated it downwards. This is the third day of a sensor that has been a problem from the start.

So what am I going to do besides tear out my hair and curse everything related to diabetes?

First I’ll call Dexcom whose reps have been very helpful by replacing sensors and giving advice during the last couple of weeks. I’ve been using new hardware for the last month and the next step might be to try another new transmitter.

Secondly I am going to make changes to my insulin regimen. In a recent post titled Lantus is Lovely and Amazing,  Katy of Bigfoot Child Have Diabetes revisited the idea of her son using Lantus in tandem with his pump. She saw the benefits as minimizing the effects of a pump failure/bad site and a way to give her son more flexibility for water activities and in general some pump-free time. The use of the pump along with Lantus (or Levemir) is called the Untethered Regimen and is best described by Dr. Steve Edelman in a 2004 article. I have used the untethered regimen several times on beach vacations and wrote about it in a July 2013 blogpost.

I have always thought that the untethered regimen makes a lot of sense. An infusion set insertion, a bad site, or a pump problem will have less of an effect with Lantus in the background. Because you take some of your basal with the pump, you still have the ability to reduce or increase basal rates as needed. I’ve had great success when I have used the Lantus/pump combo in the past and as I said in a comment on Katy’s post: “It works so well that I’ve often wondered if I should do it all of the time.”

So that’s what I am going to do. It’s time to experiment with changing up things because I am not happy with where I’m at. I’ve lost confidence in my ability to get good results by doing my normal “right things”. Of course the real villain here is Type 1 diabetes and there is no doubt that I am going through a bad period where minor things are affecting my blood sugar quickly and erratically.

I have ordered Lantus from the pharmacy and will start using the untethered regimen when I have the long-acting insulin in hand. Will I stay on a combined Lantus/pump regimen for the rest of time? Probably not, but I think it will make things easier in the near future. It could be that I just need an increase in basal, but I’m tired of tweaking things and overreacting to highs and lows.

One thing that I always try to remember is that my body does not know the difference between bolus and basal insulin. Formulas and rules of thumb are just that. Sometimes I need to be creative to figure out ways to deal with blood sugar excursions. Please realize that I have used the untethered regimen before so this is not me going off wildly without understanding what I am doing. I see my endocrinologist in two weeks and this will certainly give us something to talk about. She knows that I am a headstrong and self-managing patient and she has never been upset by that. In fact she always emphasizes that this is “my diabetes” and she is my coach.

The final topic for today is related to syringes. Whenever I’ve used syringes in recent years, I have pulled them from a box purchased on 11/15/04. Do you think I should buy new ones???

Syringes_Old

Disclaimer: Nothing I say here should be construed as medical
advice and please do not change your insulin regimen without
consulting with your medical team.

A Chance to be Heard

Laddie_Head SquareOver the weekend I was asked by fellow Minnesotan Scott Johnson to write a statement about the value of continuous glucose monitors (CGM) for senior citizens, most specifically as it relates to  Medicare and CGM coverage. Rather than recreate the wheel for why he asked me, here is an excerpt from Scott’s email:

Scott Email Paulsen

Erik Paulsen (R-MN3) represents the Third District of Minnesota. He is a champion of fiscal responsibility and technical innovation when it comes to healthcare. Paulsen is a member of the diabetes caucus in the U.S. House of Representatives and is a supporter of “bipartisan, common sense solutions” for our healthcare crisis. Although Scott did not know this, I live in Erik Paulsen’s district and have previously contacted him by letter, email, and Twitter regarding diabetes issues such as federal funding for diabetes research and the need for Medicare coverage for CGMS. (I also voted for him in the recent November election.)

Luckily for Scott, I had an unfinished blogpost about growing old with Type 1 diabetes and it didn’t take long to draft a statement to be shared at the JDRF advocacy meet-up with Congressman Paulsen. This is my statement as submitted to Scott and shared with The Honorable Erik Paulsen, United States House of Representatives:

Paulsen Statement by Me

Thank you to Scott for sharing this photo from Monday, November 17, 2014. Left to right: Camille Nash, Debbie Evans, Scott Johnson, Rep. Erik Paulsen, Chelsea Grimes.  Camille, Debbie, and Chelsia are mothers of children with Type 1 diabetes and along with Scott, represented the MinnDakotas Chapter of JDRF to advocate for Medicare coverage of Continuous Glucose Monitoring.

2014-11-17 10.51.00

 

          Oh yes, I am awesome, Scott. And so are you!

Postscript:  The day after this meeting, Representative Erik Paulsen signed on as a Co-Sponsor of H.R. 5644: Medicare CGM Access Act of 2014.  Talk about concrete proof that our advocacy efforts can make a difference!  Thank you to Camille, Debbie, Scott, and Chelsea for representing JDRF and sharing your stories and my story with Rep. Paulsen.  And thank-you to Erik Paulsen for going on record as supporting Medicare coverage for CGMS.

Yellow Dot Program

Sue B_Head SquareWhat happens if a traffic accident leaves you unable to speak? For that matter, what happens if you are a diabetic with hypoglycemia unawareness and suffer a severe low while operating a motor vehicle? I can go even further and ask what happens if you have a heart condition and suffer an incident while driving your automobile? There are many what ifs. I recently found out about a program called the Yellow Dot Program. I learned of this program when my fellow blogger Sue and her husband Steve were visiting us from New York during the summer. Somehow we got into a diabetes discussion, and the subject of this program came up because they had a Yellow Dot on the driver’s rear windshield of their car and the Yellow Dot booklet in their glove compartment. I googled my Pennsylvania State Department of Motor Vehicles and found out that Pennsylvania had the program and immediately sent away for the booklet which contains the Yellow Dot and information about using the booklet to inform police and first responders in the case of an accident.

So, what is exactly is the Yellow Dot Program? This program was created to assist citizens in the “golden hour” of emergency care following a traffic accident when they may not be able to communicate their needs themselves. Placing a yellow dot on your Yellow Dot Examplevehicle’s rear windshield alerts police and first responders to check your glove compartment for vital information to ensure you receive the medical attention you need. While it was specifically created for traffic accidents, I have been told by my Department of Motor Vehicles that they are now adapting it to include any type of medical issue including diabetes. That wonderful yellow dot on the rear driver’s window of your vehicle will alert the police or first responders that you are not drunk…you are having a diabetes-related incident.

I sent away for the pamphlet immediately and received it within 10 days. If you have read my blogs on this site, you will know that I write extensively about my worry for my husband, Marc, when he is not with me. His hypoglycemia unawareness has caused many frightening moments in our lives and my constant worry was always that he would be in the car and be stopped by the police and they wouldn’t realize that he was having a diabetic incident. This simple Yellow Dot gives me some peace of mind.

It’s very simple to start using the Yellow Dot Program. All you need to do is contact your Department of Motor Vehicles and request the Yellow Dot Kit. When you receive it, fill out the information booklet, put the yellow dot on the bottom of the rear driver’s side window and the information booklet in your glove compartment. The information booklet has a place to put your photo, all your medical information including medical conditions, emergency contacts, medications, allergies and physician information. You can also indicate your hospital preference. When the police or first responders see the Yellow Dot on your car they know to look in your glove compartment immediately. It couldn’t get any easier.

According to Peter Kissinger, president and CEO of AAA Foundation for Traffic Safety, “older individuals tend to have more medical conditions, are on more medications and are generally more fragile. This well-justified program, especially in light of the growing number of older Americans, is innovative and addresses the unique risks associated with older Americans”. While he specifically targets older Americans, it gives anyone, whether young or old, with specific medical conditions, the ability to telegraph to police or first responders that there is information in the glove compartment that will help in the event of an accident or other incident. This information is invaluable.

The Pennsylvania Department of Transportation supplies the Yellow Dot and Booklet at no charge. On some websites, I have seen places that do charge for the materials. And I also saw that every state has a Yellow Dot Program. In asking around, I found out that with the exception of Sue from New York and her husband Steve, no one else knew about this program and I truly believe it’s vital that the information be passed around. Because of this lack of knowledge of the program, I called my Department of Transportation and found out that they actually have a special department for the Yellow Dot Program and are aware that they need to do a better job getting information out to their various police departments, first responders and fire departments in my State of Pennsylvania and also to all the citizens of the State. They are having meetings with these groups in order to promote awareness.

I hope that after reading this blog, you the reader will contact your local Department of
Transportation and request your kit and also find out how much they are doing to promote this very, very important program. It can definitely save your life.

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/

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