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?

I 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, Casey 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.

Today’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.

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.

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.

As 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 of 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.