Type 1/Type 2 Conversations: Talking about Weight

Conversations BannerI first metKate Cornell in early 2013 when I began listening to the podcast archives of DSMA Live.  Her February 2012 interview introduced me to a woman who knew an incredible amount about diabetes and was well-spoken and passionate.  As I began to follow her blog, SWEET SUCCESS: MY LIFE WITH TYPE 2 DIABETES, and read her comments around the diabetes online community (DOC), I found myself thinking that her opinions mirrored many of my own thoughts about diabetes and life in general. The fact that I have Type 1 diabetes and Kate has Type 2 diabetes just didnt seem to make any difference.

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Kate and I recently came up with the idea of collaborating on a series of four blogposts in which we will initiate a dialogue on issues that affect people in the diabetes community.  We expect to learn a lot from each other and we hope that our Type 1/Type 2 Conversations will lead to more communication and mutual respect between people with all types of diabetes.

Laddie_Head SquareLaddie:  For the first Type 1/Type 2 conversation, I figured that I wouldn’t shy away from a difficult topic:  Weight.  Weight is the elephant in the room in most discussions and arguments between people with Type 1 diabetes and those with Type 2.  Weight is synonymous with blame, guilt, and ignorance.

Many people with Type 1 diabetes are thin and some of us were almost skeletal when we received our diabetes diagnosis.  When you have Type 1, it is easy to associate being thin with “Not My Fault.”  If you become comfortable in this thought process, the next logical step is to become comfortable with the stereotype of Overweight = Type 2 = Their Fault.

A long time ago I learned to stay out of the Type 1/Type 2 wars and keep my mouth shut.  That doesn’t mean that I didn’t believe a lot of the stereotypes.  I’m not going to be virtuous now and say that I have totally seen the light.  No, I’m going to say that I just dont know.

In recent years I have read a lot of research that indicates that Type 1 and Type 2 are just different manifestations of inflammation and autoimmunity gone astray.  Maybe just a flip of the coin made me Type 1 instead of Type 2.  I have a friend who was diagnosed with Type 2 several years ago.  She has always struggled with her weight.  She and her husband go on the same diet.  He loses twenty pounds and she loses one.  She wonders whether the abnormalities of metabolic syndrome and Type 2 diabetes are responsible for her weight problems, not the result of her weight problems.  She might be right.

I am very thankful that except for an occasional extra five or ten pounds, I have never struggled with being overweight.  In my many years participating in the DOC, I have learned to be less judgmental and I have gained more understanding of the issues that those with the “other kind” of diabetes face.  In the last two years I have gained 5 pounds that I have been trying to lose.  I’ve had no success.  Do I think that it would be easy to lose 50 pounds or 100 pounds.  No way.  I can’t even lose 5 pounds.

Many people with Type 2 diabetes struggle with weight.  Many people without diabetes struggle with weight.  Many people with Type 1 diabetes struggle with weight.  When I read the definition of weight in my dictionary app, I only see that weight can be measured in things like mass, thickness, gravity, and load.  I don’t see judgment.  I don’t see criticism.  I don’t see blame.  We can learn something from that.

Kate_photo_RKate:  The subject of weight and diabetes is certainly a good place to start our conversations. Laddie hasn’t shied away from what is usually a very controversial subject.  Our society is obsessed with weight: how to lose it, how to remain pencil thin and blaming those who carry too much.

I have struggled with excess weight for most of my adult life.  I was a thin child and teenager.  I married at 20 and once I began having children, the weight just crept up.  I always thought it was because of the pregnancies and my inability to take off the “baby weight”.  Whatever the reason, it was difficult to lose.  Fast forward to my diagnosis of type 2 diabetes at age 50 and cue the guilt.  It doesn’t matter that I’ve spouted, quite often, about how our type 2 dxs aren’t our fault; the guilt is still there.  “If I had just lost weight earlier.” “If I’d just worked a little harder.”  It’s easy to blame ourselves.  Here’s the thing: diabetes, regardless of type, is NOT the patient’s fault!  Yes, those of us with type 2 are often overweight or obese, but so are millions of other people and they don’t have diabetes.  Sometimes it’s hard to remember that when the media is waving the fat shaming in our face.

I was diagnosed nine years ago this summer.  I have educated myself and made some significant changes to my diet and lifestyle.  (That doesn’t mean I’m always perfect.  Far from it.)  I did manage to lose some weight early on, but things have changed in the last year. Even though I now eat very few processed carbs and more veggies; even though I exercise for 30 minutes nearly every day, I am gaining weight.  It could be due to a myriad of hormone issues: thyroid, female, insulin…but in the end it doesn’t matter what Weight_2the reason is for my inability to take the weight off.  I’m trying as hard as I can and it won’t budge.  Is that my fault?  I don’t think so.

Many people with type 1 are weary of being told that “if you lost a bit of weight you could probably get rid of your diabetes.”  Guess what, so are those of us with type 2.  The myths that revolve around diabetes and too much sugar, too little exercise, too many pounds are just that – myths.  No matter what the diabetes type, none of us did this to ourselves.  None of us asked for this disease.  Quite a few of us, with diabetes and without, could benefit from losing weight, so why does society and the media vilify those with type 2 diabetes for needing to lose pounds?

Yes, I used to love to eat pizza.  Yes, I used to take a donut from the box in the break room at work.  Yes, I ate fast food and processed foods.  Yes, I used to eat bread.  Yes, I bought into the travesty that was the Food Pyramid.  Yes, I have type 2 diabetes.  Other than the diagnosis, how am I much different than the majority of Americans?

Laddie_Head SquareLaddie:  I have learned enough about Type 2 diabetes not to blame the individual.  I don’t think that there is a magic formula to becoming overweight and I certainly don’t think that being thin is a virtue, although popular media often tries to convince us otherwise.  I do know that when I gain unwanted pounds, I feel sluggish, frustrated, and full of guilt for my perceived weakness.

I blame society for much of the increase in average weight of our population.  Many people, unfortunately including a lot of children, lead a much less active life than did their parents and grandparents at the same age.  Too much TV and video game time has turned many of us into couch potatoes.  Many children live in environments where it is not safe to walk to school or play outside unsupervised.

Bad food is everywhere and often is less expensive than quality food.  I believe that carbs are wonderfully delicious and highly addictive.  More than once I have admitted to being incapable of eating carbs in moderation.  No chocolate chip cookies is easier for me that just one chocolate chip cookie.  No chocolate-covered donuts is easier for me than just one chocolate-covered donut.  No potato chips is easier than just one.  Also we are starting to see studies that indicate that the ubiquitous low fat heart-healthy diet is in fact responsible for making us heavier and less healthy.

As Kate mentions, there are many people who are overweight but don’t have Type 2 diabetes.  Weight is one trigger for Type 2 and we need more knowledge about the other triggers.  We read statistics on the huge increase in the number of people with Type 2 and the increasingly younger ages at which it is showing up.  But interestingly enough, the incidence of Type 1 is also increasing.  There is a lot of bad stuff going on in our environment.  Let’s dedicate ourselves to looking for answers rather than slinging blame on those who need our respect and support.

Kate_photo_RKate:  Laddie and I are on the same page when it comes to unhealthy carbs being addictive.  I am also someone who is better off having none rather than a “reasonable portion”.  It’s difficult to deny yourself things that are soooo good, but it’s important that we remember to put our health first and fleeting pleasure second, at least the majority of the time.

I believe that our society puts too much focus on weight and not enough focus on health.  As someone who has thought about weight my entire adult life I feel that it would be easier to make healthy changes if we were told that our diet needed to change for health reasons and stop focusing on losing weight.  Being told that you need to lose weight when it’s obviously something that doesn’t come easily is daunting, at best.  Being told that certain foods are bad for your health might make it easier to give them up.  I’m constantly reading on reputable websites (and the blasted media) that “if people with type 2 would lose a few pounds, their diabetes would be easier to control (or worse, go away!)”.  I would rather hear that we need to stop eating unhealthy foods and be told to begin a healthier lifestyle.  If we did that then the weight loss should naturally follow.  So many “diabetes-friendly recipes” (I abhor that term) continue to focus on carbs rather than weaning us from things that cause our blood sugars to spike.  There is also a movement in the medical community toward thinking that maybe the diabetes is to blame for the weight gain and not the other way around, in people with type 2.  Dr. Peter Attia’s TedTalks video outlines that very topic quite well.

In the end, everyone, regardless of diabetes dx, would benefit from a healthier lifestyle.  Everyone would profit from less focus on weight.  I’d love to see less finger-pointing and more camaraderie and understanding.  A united diabetes front will do more good for all and possibly begin to swing the tide back to more understanding of our diseases.

Laddie_Head SquareLaddie:  Kate and I covered a lot of ground in our first Type 1/Type 2 Conversation.  Weight is not always easy to talk about, but we managed to share our thoughts and hopefully learn a thing or two from each other.

I believe that we shouldn’t shy away from difficult topics in the diabetes online community.  At the same time we need to work to be respectful and supportive of each other.  If I ever write anything insensitive, hurtful, or just plain wrong, I hope that Kate or someone else in the DOC will call me on it.  Just be nice about it and I promise that I will learn from you.  And I will apologize.  And I will be a better person for it.

Kate has chosen the topic for our second Type 1/Type 2 Conversation which will be published next Tuesday, July 15.  Rumor is that it contains some fishing photos…. I hope you’ll join us.

Stay Tuned

Laddie_Head SquareStarting next Tuesday, July 8, Kate Cornell of Sweet Success: My Life with Type 2 Diabetes and I will be publishing a series of collaborative blogposts titled Type 1/Type 2 Conversations.  Each week we will select a topic related to diabetes and share our views in a back-and-forth discussion.  Because I have Type 1 diabetes and Kate has Type 2 diabetes, we expect that we may agree on many things and at the same time run into a few areas where we have completely different experiences and viewpoints.

The aim of these conversations is not to come to a consensus on a given topic or decide who is right and who is wrong.  Our purpose is to communicate and talk about these issues.  Both Kate and I believe that a strong diabetes community needs to reflect the voices of people with all types of diabetes and all experiences with diabetes: Type 1, Type 2, LADA, parents, and so on.  We do not have to be the same in order to respect and support each other.  In fact we are stronger because of our diversity.  So let’s talk to each other and let’s learn from each other.

The first topic that we are tackling is often a difficult one in the diabetes world.  Please join us next Tuesday as we talk about Weight.

Conversations_Final

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.

My Favorite Things

Banner_DBlog Week

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)

Banner_DBlog Week

 

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?

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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

Banner_DBlog Week

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 me 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.

Banner_DBlog Week

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.

 

Banner_DBlog Week

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.