Out of the Box

Sue B_Head SquareMany times over the course of this past year since I’ve starting blogging, I’ve made mention of the fact that for the most part I’m a very private person. I’ve never liked calling attention to myself and more then anything, after having worked for over 40 years outside of my home, I’ve enjoyed being a homebody. I love to do anything with my hands. Knitting is one of my favorite hobbies as is doing very intricate beadwork. The tinier the beads, the more I enjoy working with them. I love to read and delight in spending time in the kitchen playing around with new recipes.

When I got the opportunity to start blogging on Test Guess and Go, I realized that writing about the problems that my husband and I were experiencing getting Medicare coverage for the Continuous Glucose Monitor (CGM) was therapeutic. Before I started doing this, I often felt very alone. I have friends who have diabetes but they are all Type 2 and don’t understand the problems that my husband Marc has experienced being Type 1. Through my writings, I have had the opportunity to be in contact with many people who are dealing with the same problems Marc and I are faced with on a daily basis. For me, who had become his advocate in this quest, writing became a great way to get out my frustration at a system that does not recognize the importance of a device such as the CGM. A diabetic with hypoglycemia unawareness needs this in order to feel safe and keep others safe.

On May 1 I took a huge step towards coming out of what I refer to as “my box”. I did a Podcast on DSMA Live. For those of you who don’t know what DSMA Live is or what a Podcast is, it’s an hour long program that is similar to a radio broadcast except that it’s done through a computer and in the comforts of your own home. DSMA stands for Diabetes Social Media Advocacy. Cherise Stockley is the creator and the co-hosts are Scott Johnson and George Simmons. The mission of DSMA Live is to “promote social networking in all its forms (Facebook, Twitter, YouTube, etc) in order to educate and support all people affected by diabetes”. Cherise, Scott and George interviewed me and I was able to speak about my experience as the spouse of a diabetic and my journey during the past year fighting to get a Continuous Glucose Monitor covered by Medicare. The interview is available on iTunes under Podcasts and using the search words DSMA Live or by going to this link.

I was pretty calm leading up to the day of the interview until about an hour before I was to go on the “air”. Then the nerves started to kick in. I am not and never was a public speaker. The thought, to be honest, was pretty frightening; however I felt that it was something that was necessary if I was going to inform as many people as possible about H.R. 3710, the Medicare CGM Coverage Act. This bill was introduced to Congress in December, 2013 by Representative Carol Shea-Porter and asks for coverage of the CGM if recommended by a physician. I feel that this bill is extremely necessary for diabetics with hypoglycemia and/or hyperglycemia unawareness. I will do whatever is necessary to inform the public about H.R. 3710. I am asking everyone to write to their Congressperson and request that they co-sponsor the bill so that it can be brought to the floor of the House. Please read my Join the Crusade post to find out how you can make a difference in the fight for CGM coverage by Medicare.

The Podcast started and Cherise introduced me and much to my surprise, once I started speaking, my nerves dissipated and it was smooth sailing from then on. I I give credit to Cherise, Scott and George for putting me at ease. I was pretty surprised when I looked at the clock and saw that I had already spoken for 30 minutes and hadn’t covered half of what I wanted to cover. The second half went even faster and before I knew it, the hour was up and I still had more to say. But alas, you only get an hour and my time was up. I hope to do a Podcast again in the future. This very private person definitely came out of the “box” and enjoyed doing so.

Out of the BoxA few months back, I wrote a blog about my year of growth, first deciding to advocate for my husband and then starting to write on Test Guess and Go. My experience has taught me that growth can happen at any age (even for a Senior Citizen). It is my hope that with all the effort put into getting the CGM covered by Medicare that I will one day be able to stop blogging about the CGM and go onto other issues that diabetics deal with on a regular basis in getting coverage for much needed items. Until then, I will continue doing whatever necessary to get the guideline for the CGM changed.

Musings On Being the Parent of an Adult Type 1 Diabetic

Sue May 2013_Head SquareWhen I started blogging at Test Guess and Go, in my first blogpost I introduced myself as the mother of a boy who was diagnosed with diabetes in 1975 at the tender age of 4, and I recounted the trials of those early days. It has now been 39 years since that diagnosis day. I also shared that I became a Type 1 diabetic in 1988. While I would never wish diabetes on any parent, I do believe that my diabetes has helped me to understand what my son is going through and why I need to not be critical when he experiences hypo and hyperglycemic episodes. I realize that in spite of our best efforts, diabetes has a mind and life of its own.

When your child is young and in your care, you can somewhat manage his day to day diabetes control. As he grows up, you encourage him to learn to take charge of his health and become independent. That is a parent’s job. And when he goes away to college, you are a little apprehensive, but realize that it is time to let go.

A couple of years after Steve graduated from college, he moved to New York City to seek employment in the theatre, his chosen profession. In those years before he acquired a pump and continuous glucose monitor, there were many close calls of hypoglycemia episodes. In July of 1999, my husband and I had spent a wonderful weekend away celebrating our 30th anniversary. When we returned home, there was a message on our phone from our daughter informing us that her brother had had a hypoglycemic episode while on his way to the subway. He had collapsed and broken his leg. The next morning we drove to NYC, picked him up at the hospital and brought him upstate to live with us while he recuperated. In January of 2000 we drove him back to his Queens apartment. In those days his diabetes was out of control and it took him longer to recuperate than it would now.

In May of 2000 his eyes started bleeding (proliferative retinopathy), and he began what would become ongoing laser treatments on both eyes. At that time he gained full-time employment with health insurance benefits at NYU and had to give up his dream of acting.  A couple of years later he found out that he had neuropathy. Two years ago he moved back upstate and he hasn’t needed laser on his eyes since then. I pray that it continues. His eye doctor says it’s due in part because he is not experiencing the level of stress he had while living and working in NYC.

Grow Up2Because Steve lives alone, there has been no one to keep an eye on him and we have to have faith that he will be okay. In essence, we have had to Let Go and Let God. And let’s face it, once your child is born, no matter what his circumstances and health are, you will worry about him for the rest of your life. Unlike the animal kingdom, I believe we are genetically hardwired to do this. And it’s OK as long as we let them manage their life on their own without trying to interfere. I confess that I sometimes struggle with this. Then I remind myself that if he wants my advice, he’ll ask for it, and if he doesn’t ask, he doesn’t want or need it.

It makes me sad when I read the stories of mothers and fathers today who are learning to cope with their child’s Type 1 diagnosis, but I take comfort knowing that in recent years there have been many advances in managing diabetes, including pumps, continuous glucose monitors, blood glucose meters, carb counting, new insulins, etc. There has also been much research into an artificial pancreas and we are now seeing ongoing trials. It is my fervent hope that when today’s Type 1 children are my son’s age, they will not have the complications that Steve has experienced and their parents will not have the heartache of seeing their child suffer from these complications.

My Favorite Things

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Today’s Topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

 

Laddie_Head SquareMy first Diabetes Blog Week was a great experience. Mid-week I was tired of writing and swearing that I would never do this again. Quickly I regained my mojo and was back on track. I am still overwhelmed at the number of posts that I have already read and by the huge number still to be perused. By far the best part of this week was my interactions with old friends and the introductions to new friends.

Old Friends:  When I started blogging a year ago, very quickly I met Rhonda of Fifteen Wait Fifteen and Kelley of Below Seven. Their blogs sit side-by-side in my bookmarks and because they are so closely aligned in my mind, I occasionally worry that I might accidentally switch up their names.  (Please forgive me if I do!)  Rhonda and Kelly, thanks for being loyal readers, commenters, and always an inspiration to me.

Rhonda’s Thursday post about her mantra of “Fake it ‘til you make it” is a must-read for everyone.  Kelley’s Friday post about Diabetes Hacks has a ton of suggestions for everyone with Type 1, especially Medtronic users.

Also thanks to James of t1dme for following my blog and then challenging my liberal arts education with his philosophical and artistic blogposts. His Wednesday post on mental health wove the story of Sisyphus into some vivid imagery about the mental burden of diabetes. As a former flower-child, I can only say “Heavy, Man.”

New/Old Friend:  Sometimes it takes a while to put together the puzzle of who someone is and how they fit into your life.  Colleen of d-meanderings has left comments on my blog several times in recent months, but it took Diabetes Blog Week to introduce me to her blog.  Anyone who starts Snapshot Saturday with a photo of Krispy Creme donuts deserves special mention.

New Friend:  One of the first posts I read on Monday was by Kyle of Active Diabetic-An Ongoing Experiment.  His Change the World post was passionate about athletic endeavors as a way to empower people with diabetes.  I totally agree with him although rock climbing and extreme cycling are out of my reach.  All week his posts were beautifully and intelligently written.  Plus he loves dogs and lives in Newfoundland!  Be sure to investigate his blog.

Best Laugh:  Kim of Texting My Pancreas bent the rules a bit for Poetry Tuesday by providing some diabetes rewriting of a couple of Saturday Night Live skits.  If you want a good laugh and yearn for knowledge about strippers and tube trimmers, check it out.

I read many wonderful blogposts this week and am amazed at the talent and passion of my fellow bloggers in the DOC. I could have mentioned one hundred posts here and just picked a sampling of my favorite things. Parents, Type 1’s, Type 2’s: thanks to everyone for sharing your life with me.

Final thanks to Karen Graffeo of Bitter~Sweet™ for a great Diabetes Blog Week!

Diabetes Soldiers

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Today’s Topic:  Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

 

Laddie_Head SquareIn yesterday’s post, I mentioned that I am trying to convert from a Windows user to a MacBook junkie.  It hasn’t happened yet. I am a MacWinBookDows person. I need them both.

Today I started with a photo of 52 crystals lined up in a row.  The crystals are the beautiful blue pieces that operate my Animas reservoirs. A long time ago I learned that I don’t need to change my reservoirs on the same schedule as my infusion sets. Each reservoir lasts me for about a week. So these 52 crystals represent a year of reservoirs for me.  A year of insulin. A year of life. These crystals represent the soldiers that keep me alive. Day after day. Reservoir after reservoir. Week after week.

They remind me of Chinese soldiers. All in a line. Powerful, but regimented. One, two, three, four, five. The Great Wall of China.

My kitchen has back splash tiles that measure 3.5 by 3.5. Add in the grout and each tile embraces 5 Animas crystals.10 tiles with 2 leftover crystals equals a year.

This morning I lined up 52 crystals. I cropped my photo and then used various filters in Pixelmator to show my Diabetes Soldiers in different costumes. I couldn’t figure out how to do the final cropping on my MacBook, but Photoshop on my Windows Desktop delivered my final photo: Diabetes Soldiers, Diabetes Soldiers Black & White, Diabetes Soldiers Sepia, Diabetes Soldiers Green, Diabetes Soldiers Blurred & Colored, Diabetes Soldiers Bumped, Diabetes Soldiers Vortex and Colored, Diabetes Soldiers Inverted.

Diabetes Soldiers. One, two, three, four, five. Animas reservoirs keep me alive. One, two, three, four, five. Insulin keeps me alive.

Every day.

Thank-you.

Life Hacks for Diabetes (and Blogging)

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Laddie_Head SquareBecause the audience for Diabetes Blog Week is mostly a “With It” crowd, I don’t know whether I have any diabetes tricks that will make my readers think “Aha! What a fabulous idea. I would have never thought of that.” One reason for that is that almost everything I know I learned from the DOC. But many of my readers are also bloggers. So I decided that I would briefly mention a few diabetes tricks and then a few blogging hints. Because I am approaching my one year anniversary of blogging, I’m sure I’m qualified to help those of you who have been doing this for years and years!

Diabetes Related

Pull out the scissors:  A few years ago after I had 2-year period where three or four Medtronic pumps cracked in the exact same place. I was using the Medtronic clip and one rep finally suggested I quit using the clip. They sent me a free leather case which I despised. I started carrying the pump in my pocket with no other protection for it. I hate to sew and just used my scissors to cut holes in my pockets for the tubing to fit through.  I have never had any of these holes fray badly or ruin my pants. So those who think you need reinforced and stitched holes for the tubing. Not true. Just be careful when you cut the hole so that you don’t cut any other part of your outfit. Also, don’t put the hole near the bottom of the pocket because things like car keys and coins will fall out of the pocket and take a ticklish journey down your pant legs. BTW once I quit using the Medtronic clip, I never had a pump case crack again.

Cargo PantsPants with Pockets:  I previously wrote a blogpost about my favorite “diabetes” pants and thought I’d give the link here. As a woman I struggle to find pants with pockets that can hold my pump, CGM, glucose tabs, car keys, and phone. These slacks are perfect for me and  I wear them most of the time. I even bought an extra pair and shortened them to work as capris. Click here to get the information.

FedEx LogoDon’t wait at home:  Most of us order at least some of our supplies and medications by internet order and rely on FedEx and UPS to deliver them to us quickly and in good condition. If you live in Minnesota and are expecting a sensor delivery and it is -10º out, what do UPS Logoyou do when you need to go to work and can’t stay home to receive your package? Or you live in Phoenix and don’t want insulin sitting on your front porch in 115º temperatures. Both FedEx and UPS have programs that give you many options over the delivery of your packages. Click here to read my November post detailing services available from FedEx and UPS.

 

Blogging Tips

Those of you who read my blog regularly have probably noticed that I use graphics or photographs for every post. The last thing in the world that I am is an artist, but I used to work at Kinkos/FedEx Office in the days when we provided in-store design service for our customers. I learned the basics of Adobe Photoshop and Illustrator and thoroughly entertain myself by continuing to work in those programs. This winter I purchased my first Apple computer and am slowly trying to wean myself from my Windows design programs. I think that Pixelmator at $14.99 will be a good replacement for Photoshop. I’ve been told that Sketch will replace Illustrator, but I haven’t taken the plunge at $79.99. I’m going to throw out a couple of ideas that you can use for adding graphics to your posts.

Text as Art:  I often use text as the basis for a graphic. I am cheap and there is no way that I am going to spend money buying fonts to use in my blog which nets me zero money. My absolutely favorite site for downloading free fonts is Font Squirrel which bills itself as Free Font Utopia. You can browse through categories and find some really great fonts to download. It’s easy to download fonts and if you don’t know how, just Contact Me through my blog and I’ll help you. If you want to see some Font-based graphics, click here and here.

Clip-art:  So far I have not been able to abandon Windows and live in a totally Mac world. My best source of clip-art is through Microsoft Word. Under the Insert Tab, click on Clipart and you will have access to a huge library of free clip-art. I use this clip-art on my blog as well as for fun personal documents. In my Mac world I have not found a lot of free clip-art. I bought PrintMaster for $40 and it has a lot of clip-art. But I keep going back to the desktop and Windows. I have an iPhone, an iPad, a MacBook Pro, and a Windows Desktop. I use all four devices every day.

Mantras and More

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Today’s Topic:  Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day.  Or more specifically, a hard diabetes day.  Is there something positive you tell yourself?  Are there mantras that you fall back on to get you through?  Is there something specific you do when your mood needs a boost?  Maybe we’ve done that and we can help others do it too?

*

Laddie_Head SquareAll day long I’ve tried to think of something to write on mantras.  Reading multiple #DBlogWeek posts about mental health has not done much to inspire me. I’m feeling a little gloomy reading about the struggles of my fellow DOC members. Right now I just want to yell “GROUP HUG!

I wasn’t a cheerleader and “push ’em back, push ’em back, way back” doesn’t doesn’t seem to have much relevance beyond what I should be doing to dessert at the table: “Push it back, push it back.” I’m not much into meditation and “Om” mostly reminds me of Sheldon’s throat singing on The Big Bang Theory.

The Little Engine That Could is a charming and inspirational children’s book, but “I think I can, I think I can” seems a little trite on my 1,460th insertion of a long-needled Silhouette infusion set. I know I can, but I still don’t want to.

“Take one for the team” implies that because I have diabetes, I am statistically saving another person from getting diabetes. If only.

I’ve often written about getting up every day and trying to do a better job with my diabetes. For the most part, that is what I do. But I can’t use the “Try, try, try again and you shall succeed” mantra. What will be the measure of my success? That I didn’t die? That my diabetes is cured? That I have a good A1c? The only good prize to win with diabetes is that you don’t get the bad prizes. “I guess that is a good prize,” she says, smiling….

Just Do ItMaybe “Just do it” should be my mantra. With visions of a Nike swoosh, that can be inspirational like climbing Mt. Everest. Or swimming the English Channel or finding a cure for cancer. I’d look good in a Michael Jordan basketball uniform (not!).

But “Just do it” can also mean “Quit thinking about it, you ninny, and do what has to be done.”  Test your blood sugar, count your carbs, change your pump site, calibrate your Dexcom, order your supplies, bolus for meals, do it again. Do it again and again and again. Don’t think about it. Just do it.

Yeah, that’s the one. Just do it.

Always an Optimist

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Today’s Topic:  May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

 

Laddie_Head SquareI don’t carry a lot of emotional baggage with my diabetes.  I knew very little about diabetes when I was diagnosed as a young adult in 1976 and I didn’t know that I should be sad, mad, or depressed. Both of my parents had issues with depression and for whatever reason, I have been spared that journey into darkness.

I began my diabetes life before home glucose monitoring was available and my insulin regimen was one shot a day of Lente. I followed doctor’s orders when it came to testing my urine and taking my insulin. I wasn’t perfect when it came to my exchange diet, but I followed the diet plan more often than not. Diabetes wasn’t filled with too much guilt and I had no expectation of perfect control. In some ways I was also very naive. It was never part of my mental make-up that I even had diabetes. To this day my self-conception is that I am active and healthy and that whatever the stereotypes and realities of diabetes are, that’s not me. A phrase in the songs of several artists (The Band, Good ShapeCasey Shea, Harlan Howard, and more) fits me perfectly:  “I’m in pretty good shape for the shape I’m in.”  Stupid for sure, but it helps keep mental demons at bay.

Lest you think that I am all smiley-face and Pollyanna about diabetes, I find it to be an incredibly frustrating and mind-tangling condition to live with. Most of the time my blood sugar responds in a somewhat expected fashion. Things aren’t perfect, but the tracings on my Dexcom are familiar and not totally from Mars. Then days like yesterday. My BG started climbing after my morning walk when usually it stays level or trends low. Multiple corrections and a lunch of only 18g carbs rocketed my numbers high and higher. It was the day to change my infusion set and two changes later (the first one hurt), nothing improved. Boatloads of insulin finally brought things down just in time for dinner. Stir-fried chicken and vegetables (no rice!) re-launched my BG to the stratosphere.

Most people who know me think that I am incredibly disciplined and rarely veer off the path of lowish-carb good nutrition. Ha! Not so! A “good diabetic” would have spent the evening drinking oodles of water and avoiding the snack cupboard. Unfortunately my most common reaction to unexplained and “undeserved” highs is to say “What the heck!” and start gorging on crackers, cookies, and ice cream. Add another glass of wine to the mix and moderation is banished.

Frustration with diabetes. Disappointment in my lack of willpower. Guilt for sure. A night of Dexcom squawks. A recipe for mental anguish and depression.

But morning comes. And just as I have on each of the 13,693 days since I was diagnosed with diabetes, I get up and resolve to do a better job today. Another day filled with diabetes, but a new day nonetheless.

A Diabetes Poem

Abby with Abby Crown_no backgroundToday’s Topic:  This year, Diabetes Blog Week and TuDiabetes are teaming up to bring out the poet in you! Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. After you’ve posted it on your blog, share it on the No Sugar Added® Poetry page on TuDiabetes, and read what others have shared there as well!

Thanks to Abby the Black Lab who has taken time off from her busy day of napping to share some thoughts about diabetes.

 

 A Diabetes Poem by Abby the Black Lab

I don’t know fancy poetry,
But I do know how to rhyme.
Diabetes is a pain-in-the-butt
All of the time.

I’m not a smart alert dog.
I don’t smell lows or highs.
But I do wish that diabetes
Would take a big good-bye.

At eighty pounds I’m big and black
And always need a hug.
I’m just a big old lapdog
And cuddly like Lancet the Pug.

It’s true that I am just a dog.
Dog biscuits make drool.
I am so glad to not count carbs
Diabetes is so cruel.

I’m starting to get old and stiff.
My joints are getting sore.
It’s sad to know that one gray day
DSMA walks will be no more.

Glucose meters come and go.
Diabetes seems to stay.
It’s faithful like a big black dog
And never goes away.

If I could bark and scare away
Type 1 and Type 2 likewise.
I’d ask for heaping bowls of food
And not the Nobel Prize.

So diabetes, please be cured
And don’t come back another day.
You’re not a friend like cats and dogs,
That’s all I have to say.

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Change the World

This is my first time participating in Diabetes Blog Week and I am overwhelmed at the idea of publishing a blogpost every day for seven days.  I usually take a long time (too much time!) to write each blogpost and that just won’t be possible in this scenario.  At least I had access to the topics a week ahead so that I could get a head start thinking and writing and thinking more and writing more and thinking a lot more and ….  Well, you get the picture.  Thanks to Karen Graffeo of Bitter~Sweet™ for being the brains behind this project and organizing it for the fifth year.

 

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Today’s Topic:  Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

 

Laddie_Head SquareAs I looked at the topics for this week, today’s subject is the hardest one for me to write about.  In recent months, discussions about advocacy have been everywhere.  In some ways I think I’ve already said it all.  And if I haven’t said it, for sure someone else has.  Unfortunately just because we’ve talked about issues over and over again doesn’t mean that the problems have been solved and we no longer need to think about them.  No, the problems are still here and we need to keep bringing them back to the forefront.

I think that there is an umbrella under which all of my advocacy concerns about diabetes fit.  I strongly believe that everyone with diabetes needs access to proper care and supplies.  That can mean a lot of different things.  I participated in the Spare a Rose, Save a Child campaign in February.  That was and is the nitty-gritty of needing proper care and supplies.  Many children diagnosed with diabetes in developing nations have almost no access to education and insulin.  Every donation to the campaign made a huge impact because a child who had absolutely nothing was given the gift of life.

Although insulin and diabetes supplies are more readily available in the United States than in developing countries, I would still argue that many people in our country are not getting proper care for their diabetes.  Every person who is told that she has a “little bit of diabetes” and then sent home without education and test strips is not getting proper care.  Every adult with crazy high blood sugar who is handed pills without any consideration that he might have Type 1 instead of Type 2 diabetes is not getting proper care.  Every child who has the flu-like symptoms of diabetes at the pediatrician’s office and doesn’t get a routine blood glucose test is not getting proper care. Unfortunately these stories happen every day.  Too many people with Type 2 diabetes are only diagnosed once complications have set in.  Too many people with Type 1 diabetes are simply handed Metformin when their bodies are screaming for insulin.  Too many children end up in the ICU with DKA or even die when a simple fingerstick at the pediatrician’s office might have diagnosed diabetes.

My co-blogger Sue from Pennsylvania has written extensively about the struggle to have Medicare cover the cost of a continuous glucose monitor (CGM) for her Type 1 husband.  What was considered proper care for him when he was 64 years old is now considered “precautionary” and being denied now that he is 65.  In addition, Sue’s husband and many other pump-users on Medicare are increasingly having problems finding vendors to provide their insulin under Part B because Medicare’s outdated reimbursement rates are less than the vendor’s cost to purchase the insulin.  Medicare coverage needs to reflect current standards of care for diabetes and its reimbursement rates need to cover current costs for things such as insulin. Without those changes, many seniors with diabetes will continue to struggle to access the diabetes supplies and medications that keep them healthy and safe.

As someone who is living with Type 1 diabetes and getting older, I increasingly worry about receiving proper care once I am no longer able to care for myself.  Whether it is a short hospitalization or a permanent move to a nursing home, I need my caretakers to understand the differences between the types of diabetes and treat me appropriately.  I have been “privileged” to have good insurance throughout my diabetes life, but no amount Umbrella of Concernsof privelege will protect me from a potentially lethal injection of insulin based on a Type 2 sliding scale.  Proper care isn’t a sometimes thing.  It needs to be an everyday thing for every individual with any type of diabetes.

Proper care and access to supplies and medications.  That’s a gigantic umbrella over a huge number of issues for people with diabetes.  Until children in developing countries have reliable access to insulin, until people with Type 2 diabetes are diagnosed before complications have set in, until Medicare recipients with hypoglycemia unawareness have access to CGMS, until no child has to die of undiagnosed diabetes, until….

Until everyone with diabetes receives proper care and access to needed supplies and medications, our job is not done.

IF ONLY

Sue B_Head SquareFor the past few months, I’ve been working on Level 4 of the Medicare appeal for my husband’s CGM. It finally went in the mail to the Medicare Appeals Council (MAC) at the beginning of April but I needed a few weeks to clear my brain after weeks of trying to get this appeal in order. Fortunately, for this level, I was able to find an attorney who drafted the appeal. There was a lot of back and forth to get it right and I was thrilled with the end results. The argument is that Medicare’s regulations clearly indicate that blood glucose monitors are covered if (1) the patient has diabetes; (2) the patient has been trained in how to use the device and is capable of the same; and (3) the device is designed for home rather then clinical use.  Included in the appeal letter were 130 pages of attachments displaying that CGMs are recognized as the standard of care for brittle diabetics not only within the United States, but internationally. I have been told that the wait to hear from the MAC can be anywhere between three to six months but our attorney has indicated that if the wait is longer then three months, we’re going to escalate it to District Court. Future blogs will keep you informed of what’s happening.

But now onto an interesting article that was recently in the Tampa Bay Times. The headline was “Low blood sugar cited in death of prominent community leader’s husband after Tampa police traffic stop.” If you would like to read the entire article, you can follow this link.

To give you a synopsis of the article, Officer Anthony Portman received calls of an erratic driver who was swerving onto the sidewalk and into a stop sign. When Officer Portman arrived at the scene and asked the driver, Arthur Green Jr. 63, to hand over the keys, Mr. Green became combative. Officer Portman called for backup and then called for Tampa Fire Rescue to send medics. When Cpl. Matt Smith, the backup officer arrived, he indicated that he had seen diabetic incidents before and suspected that this what Mr. Green was having, but because Mr. Green was resistant, the officers restrained him with handcuffs. At that point, Mr. Green stopped breathing. The officers attempted to give Mr. Green CPR but when the Fire Rescue arrived at the scene, Mr. Green had no pulse. He was transported to St. Joseph’s and after 19 minutes of trying to resuscitate Mr. Green, he was pronounced dead. He had a blood sugar of 29.

A few days after receiving the article, Laddie, my fellow blogger, sent me an email and asked what I thought about the incident. Both Laddie and I agreed that we had no idea of what Mr. Green’s diabetes history was. In pulling up whatever information I could about this incident, I do know that Mr. Green was not wearing a medical bracelet. There is no mention in any of the articles that I’ve read that Mr. Green had a CGM so I am assuming that he did not have one. The main issue of most of my blog posts is Medicare and their denial of coverage for the CGM. Mr. Green does not seem to fit in with this since he was 63 years of age and unless he was on Social Security Disability, he obviously wasn’t on Medicare.

Tampa StoryAfter thinking about this situation for a few days, I decided that the broader issue is that this man died because he didn’t have a CGM. Had he had one, he would have been alerted of his falling blood sugar in enough time to make a correction to get his blood sugar elevated. The reason why he didn’t have one isn’t the important part of the story.   It’s the fact that he didn’t have one. It proves the point that the CGM is a lifesaving device and that anyone, whether young or old, on Medicare or not, could be saved from a preventable death with the use of this device.

This could have been my husband. He’s had quite a few incidents where the same thing could have happened to him as happened to Arthur Green Jr. Call it luck or a higher power. My husband has been fortunate enough to have been stopped by officers who recognized immediately that he had a medical problem (he does wear a medical alert bracelet) and notified EMS quickly enough for them to get to the scene and administer glucagon (a hormone that stimulates your liver to release stored glucose into your bloodstream.  It is used as medication to treat someone with diabetes that has become unconscious from a severe insulin reaction). He does not have a CGM presently. This has been what our 1 ½ year long appeal has been about.

Entertainment people always say that any press is good press whether it’s positive or negative. So in this instance, The Tampa Bay Times calling attention to the unnecessary death of Arthur Green Jr., as sad as this death is, calls attention to the fact that this can happen to any diabetic at any time. If only Medicare would be aware of this incident and understand that those people who are asking for coverage for their CGM are not doing it because they want another piece of equipment to attach to their bodies. They just want to assure themselves that they are safe and able to keep others safe as well.

It’s so difficult to understand why Medicare just doesn’t get it.  IF ONLY they did.