Eight Days of Hanukkah

Sue B_Head SquareSince I celebrate Hanukkah, I decided to take each day of our eight day celebration and write what I am most grateful for.

On the 1st day of Hanukkah, I am very, very grateful for my husband Marc.  He is my rock and has been for over 45 years.

On the 2nd day of Hanukkah, I am grateful for my children: my son Jason, my daughter Robin and her husband Greg and my granddaughter Bailey.  They are the loves of my life.

On the 3rd day of Hanukkah, I am grateful for my friends.  Most of them have been in my life for over 35 years and since most of us live away from our immediate families, we have become family to each other.

On the 4th day of Hanukkah, I am grateful for my love of doing things with my hands.  I Menorah2014love crafting especially knitting and beadwork.  I especially love knitting afghans for our friends’ children who are getting married and for the babies when they come.

On the 5th day of Hanukkah, I am grateful for my love of reading.  I have traveled to different places and learned so much because I love to read everything and anything and have always, since early childhood loved the written word.

On the 6th day of Hanukkah, I am very grateful that we have a wonderful Hanukkah gift of a cruise for our entire family.  Since we haven’t seen sun here for the past five days (Harrisburg, PA), it will be wonderful to be in the sunshine and warmth of the Caribbean.

On the 7th day of Hanukkah, I am extremely grateful to the Veterans Administration for supplying a Continuous Glucose Monitor  (CGM) to my Type 1 diabetic husband Marc.  After a 2 year fight with Medicare that was frustrating and going nowhere, the VA is supplying the monitor and sensors free of charge.

On the 8th day of Hanukkah, I am very grateful to myself for having the tenacity to decide to fight for the CGM.  I learned so much about myself during this journey.  I never knew I had it in me to blog, to do a Podcast, to speak to so many people across the United States who were in the same predicament as Marc and make so many new friends.

So to everyone who reads my blogs, I wish you all a Merry Christmas (or Hanukkah) and a very Happy and Healthy New Year.

Why I Don’t Download

Laddie_Head SquareThere are many discussions around the DOC about data interoperability and ownership of data. There are also survey results that indicate how rarely most people with diabetes download their devices.

Last week I had an endocrinologist appointment. I know that I am guilty-as-charged about not downloading my devices very often. But I always do it prior to endo appointments. I consider data extraction a tedious process and it seems to take forever. To figure out if the download time is a legitimate excuse or whether I am just a slacker, I decided to chart my experience.

10:38  I gather up the necessary cords and my two Freestyle meters. My pump and CGM are of course close by in my pockets.

10:40  I prepare my Animas Ping pump for the download. I change the Display Timeout from 15 seconds to 1 minute. If I don’t do this, the pump will sometimes turn off before the Diasend Uploader can start reading its data. Then I suspend the pump and unhook it from the infusion set. I open the Diasend Uploader and attach the wireless upload device to my computer.  I start the download which is always a slow process. After the pump is downloaded, the Diasend uploader asks for my login info and I type it in.

10:47  I have finished the download of my pump and I download Freestyle Lite Meter #1 to Diasend. Quick and and easy.

10:48  I download Freestyle Lite Meter #2 to Diasend. Once again, quick and easy.

10:49  I plug in my Dexcom G4 receiver. The download to Diasend is simple and finished within a minute.

10:50  I follow the Uploader prompt to go to the Diasend website and sign in.

10:51  While the Dexcom receiver is attached to the computer, I open Dexcom Studio and download the CGM data to the Dexcom program.

10:53  All of my devices are downloaded and I cram the cords back into my “Diabetes Download” handy-dandy storage box.

I have invested 15 minutes in my diabetes download project. If I didn’t have an endo appointment and just wanted to view the reports on the computer, the bulk of the work would be done. Both Diasend and Dexcom Studio do a good job of displaying reports clearly and quickly.

But I want to save some of the reports to my “Medical Reports” folder and print them out for my doctor to review.

10:54  In Dexcom Studio I open the Summary Report in Microsoft Word using the last 14 days of data and save it to my computer. Then I print it for my endo. I have felt that I have really been struggling lately with my diabetes, but the reports look quite good. When you’re stuck in the trees, life can look bad although the forest view is quite respectable.

10:57  I go to the Diasend website to print reports. The Compilation Report is the most useful summary because it merges data from my pump, meters, and CGM. I also like one of the CGM reports. I save both to PDF.

I am going to digress here and talk about how some endocrinologists hate Diasend reports. They look fabulous on the computer and many doctors view them that way. But when they are printed, the charts are so small that they are almost unreadable. HEY DIASEND! NOW THAT YOU FINALLY DOWNLOAD ALL OF MY DEVICES, PLEASE PRINT THE REPORTS SO THAT MY DOCTOR CAN READ THEM!  

We own a full version of Adobe Acrobat (a different program than the free Adobe Reader) and I am able to crop the Diasend reports and enlarge them. They are still small but better than the standard reports. My endo will be able to read them. I print the reports and save them to my computer.

11:08  My pump and CGM are back in my pocket. Freestyle Meter #1 is in my purse and Freestyle Meter #2 is on the floor by the stairs to be returned to the master bathroom on my next trip upstairs. (I never put anything on the stairs because my first frozen shoulder developed after a fall from stepping on shoes left on the stairs.)

So here’s a summary:

15 Minutes: That’s what it takes to download my diabetes devices to Diasend and Dexcom Studio. If I didn’t want to print anything, various reports are immediately available.

30 Minutes: That was the total time to download my devices, print several reports for my doctor, and save those same reports to my computer. Obviously I spent more time than other people might.

15 minutes. 30 minutes. That is why I don’t download all of my diabetes devices very often.Download Time

Okay, now it is time to stop making excuses. The data from my Dexcom G4 is by far the most useful information I have when it comes to evaluating blood sugars. I can download the receiver to Dexcom Studio in one minute. It takes another minute to download to Diasend. And maybe another minute to find the download cord and open the computer programs. So from start to finish it’s two or three minutes. I can even save a minute by downloading to only one program instead of two.

So what have I learned from my time study? I have learned that it would make sense to start downloading my Dex G4 on a more regular basis. It’s super quick unlike the time and effort that it takes to download four devices. I can download my G4 to Diasend (unfortunately not yet to Dexcom Studio) on my MacBook and that is even faster and more convenient than with my Windows desktop.

Will I change? I actually think I might. (Just for my Dexcom, not the other devices)

One last question: If I download my data, am I supposed to look at it?

Musings on Approaching Medicare

Sue_HeadSquare2I will turn 65 in May, which means I will be Medicare eligible. I have several friends and family members who thought going on Medicare was a wonderful blessing, because they now had affordable health insurance that also covered extras like well exams and gym memberships. Of course I think that Medicare is a blessing for seniors. However, for Type 1 diabetics who have had use of a continuous glucose monitor (CGM) to give them a continuous readout of their blood sugars, thus minimizing hypo and hyperglycemic episodes, this often meant that they lost whatever health insurance plan they were on, and were forced to go on Medicare. Unfortunately, Medicare presently does not cover CGM’s because they consider it “precautionary equipment”.

Anyone who regularly reads Test Guess and Go and has read Sue from Pennsylvania’s blogs about her husband losing his CGM coverage and his numerous appeals to get it reinstated already knows what a futile effort that is. Thankfully, Sue’s husband was able to get CGM coverage through the Veterans Administration. There is presently a House bill (H.R. 5644: Medicare CGM Access Act of 2014) and a companion Senate bill (S. 2689) that would facilitate Medicare coverage of CGM’s. If you haven’t already done so, please ask your representative and senator to co-sponsor these important bills.

I am somewhat apprehensive as I approach Medicare. I say somewhat, because I am lucky to have retiree health insurance through the school district I worked for, and will be able to continue with this insurance after I go on Medicare. I presently have excellent coverage of my CGM, but at one time I received a denial of coverage, appealed the decision and won my appeal. I am concerned that my insurance plan will follow Medicare guidelines and deny coverage. I will not know until I go on Medicare, so I will have to wait and see what happens, but I am hoping that they will continue to cover my Dexcom CGM. I am continually thankful that I have it, and am amazed at how much my quality of life has improved despite sometimes annoying beeps that warn me of impending high and low blood sugars.

I have been using the Omnipod pump since 2007, my one and only pump. I know that Medicare does not cover this pump, so if my retiree insurance won’t continue to cover this pump I will be forced to use a tubed pump. This is not such a big deal to me as continuing to use the Dexcom.Medicare Questions

If I am unlucky and my insurance plan won’t continue to cover my Dexcom, I will join the hundreds of other senior Type 1’s who can’t benefit from CGM coverage, putting their lives  in danger every day. I pray that we can get more momentum for these bills and get them both signed into law.

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.

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.