Diabetes Blog – Happy-Medium.net

This is the blog post I did not want to write.

I love writing here. Actually, I love writing. I enjoy being a part of the Diabetes Online Community, and I enjoy writing (and now podcasting) maybe more than anything else I’ve done in the past few years. It’s a constant source of enlightenment (yes, I learn from you). It’s a constant source of joy to look at a topic and write something meaningful. It’s fun. A lot of why I do this is because it’s fun. It’s a gift to be able do this, and it’s one I’m grateful for every day.

But my paying job needs me right now. Until the end of the year, my work weeks that usually total around 40 or so hours are now totaling around 55 hours or so. That’s not so much when you’re 25, but it’s a lot when you’re 53. Also, The Great Spousal Unit has been away almost as much as she’s been home over the last few months, and I really feel like, you know, since I made this commitment to her 22 years ago, I should actually spend time with her when she’s here. Both of those things have seriously cut into my time to write and podcast.

Let me be clear: I am not closing up shop. I will continue to write. I will be delivering new episodes of Diabetes By The Numbers. If you write to me requesting a Champion Athlete With Diabetes medal, I will be happy to send one out. I still plan to participate in the #DSMA Twitter conversations every Wednesday night. I’m not saying no to anything, and I will try to fit whatever I can into my schedule any way I can. I am not going away.

But, though it really hurts my heart to say it, unless something changes, my pretty much three-times-per-week posts will be less frequent through the end of the year. Once we reach January, I suspect that will change and I will be able to go back to something a little more regular again. That’s what I want, and that’s what I like. I write here for you, but I write here for me too. Can you get endorphins from writing?

The really good news is that there are still plenty of other diabetes blogs to read, and even more coming online all the time. I get so much reading about others living with diabetes, their experiences, their challenges, and how they’ve met them with bravery and resilience. That should hold me for a while, and I hope it will hold you too in the times when you don’t see something new here.

I’ll talk to you soon… I promise.
 

This post is for everyone who does not live with diabetes.

Hi there… thanks for taking a few minutes out of your day to visit my space on the internet. Today, I’d like you to close your eyes and imagine this:
 
 
Imagine that you’ve just gotten a life-altering diagnosis from your doctor. You’ve been told that you have an incurable disease. You can manage your disease, enough to stay alive, but it’s still an inexact science and often, just when you think you have things well in hand, you face a life-threatening situation. Completely out of the blue. Even though you’re “doing everything right”. Like I said, an inexact science.

Imagine voluntarily poking your finger multiple times each day, just so you can have a benchmark from which to apply your inexact science. Imagine having to do it more often on the days when you feel your worst, like when you have the flu, or after you’ve had a terrible bout with hypoglycemia this morning.

Imagine you’re an insulin pumper. To be able to get the one thing that keeps you alive, you have to be willing to abuse your body every three days, injecting a thick needle with a spring loaded device. Once you remove the needle, a little plastic cannula is left behind. Having a foreign object in your midsection, your behind, your thigh, or your arm for 72 hours means you’ll eventually develop scar tissue that will make it even harder to abuse your body every three days.

Imagine you’re using a continuous glucose monitor, or CGM, to help keep abreast of how your blood sugar is trending throughout the day. Great tool… but there’s another injectable, this one every seven days.

Now, imagine you’re not an insulin pumper. Great. Now you have to inject your insulin using a syringe several times each day.

Imagine having to fight to get insurance to cover even part of this, including the very drug you need to stay alive. Oh, maybe you can get that drug, but it’s not the version of the drug that works best for you, because your insurance carrier has decided they can make more money by steering you to another version. The brand that’s covered doesn’t work as well for you? When you’re on the brand of insulin we cover, your glucose runs high all the time, potentially causing co-morbidities to become a reality? So what… we make more money with it, so you’ll use it. And pay us for the privelege.

Imagine a state legislature and a congress that allows this to happen.

Imagine being told, at the age of 65, when you’re eligible for Medicare, that you’ll have to give up your CGM because it’s not covered. Imagine a congress that allows this to happen.

Imagine living with the threat of all of the things that might happen to you as a result of living with diabetes 24 hours a day, 7 days a week, 365 days a year, without a vacation, whether or not you were able to manage your diabetes well over the years.
 
 
The point here isn’t to guilt you, dear reader, into feeling sorry for all of us living with and affected by diabetes. Instead, the point is to show you how much we endure, and how strong we really are, even at our weakest.

People With Diabetes are your friends and neighbors. Family. Co-workers. Teachers and students. Infants, teenagers, adults, and seniors.

Imagine a world where one is not stigmatized by nature of the disease they live with, but rather recognized for their endurance despite the nature of the disease they live with.
 

Today is a glass half full day. Why? Because I want it to be a glass half full day today. It’s my blog… do I need another reason?

I was thinking last night of how far diabetes tools have come since my diagnosis over 24 years ago. See what I mean? Glass half full. I came up with twelve (okay, really, eleven). Check out this list:
 
 
1. When I was diagnosed in 1991, the number of glucose meters available to People With Diabetes was very limited. Today, even though they’re not always the best choices, there are many more glucose meters for PWDs to choose from.

2. And let me state the obvious: My first glucose meter took 45 seconds to give me a reading. Today, I get a reading in just five seconds. Very few things have actually saved us time over the years, so I think this is a lot bigger than many people realize.

3. Unfortunately, the cost of test strips has been, and continues to be, ridiculously high. But it’s a glass half full day today, so… moving on…

4. Continuous Glucose Monitors! Gotta love CGM technology. Real-time readings of how your BGs are trending? Who doesn’t love that? Glass half full, baby!

5. Insulin pumps. Hey, I know that insulin pumps were developed earlier than my diagnosis, but the prevalence of insulin pumps, and the technology in insulin pumps, has definitely improved over time. And…

6. I didn’t start on an insulin pump until just over five years ago. For the first 19 years after diagnosis, I injected insulin first with a needle that was, I don’t know, maybe an inch and a half long? Then I went to smaller gauge needles, then I went to shorter lengths, and now, of course, we have insulin pens that are easier to carry and actually contain our insulin too. There’s something to be said for reducing the burden of diabetes, and better insulin delivery devices via injection are another step in the right direction.

7. And how about that insulin? It’s come a long way since 1991. We have long acting insulin like Lantus and Levemir. We have more reactive shorter acting insulin (is that the term?) like Apidra, Novolog, and Humalog. And we even have Afrezza now, inhalable insulin, and I guarantee hardly anyone was thinking about that back in 1991. We’ve seen incredible improvements in our most necessary synthetic hormone over the last 24 years. Now if they can just find a way to make it affordable.

8. No list like this can exist without mention of the wonderful Diabetes Online Community. How many of us would be forced to live our diabetes lives alone, out of touch with the latest news, unable to communicate with even one other soul who understands what we go through on a daily basis? It is not in any way an understatement to say that the DOC has been a lifesaver for many, literally and figuratively.

9. Uploading, sharing, and analyzing your data. By the time I was diagnosed, I hadn’t even purchased my first computer. Today, I’m sharing information with my endocrinologist, and she’s uploading my pump information every 90 days. Many, many more are using Nightscout or Dexcom Share to provide real-time CGM data to their loved ones for peace of mind and added safety. Such a simple idea, such a huge advancement.

10. Apps! Apps! Apps! From bolus calculator apps to fitness apps to apps designed to help us tame the diabetes monster, there are more ways than ever to help us crunch all the numbers and do better than we might have done all on our own.

11. The number of gatherings and conferences about diabetes and for People With Diabetes has really increased, even since I found the Diabetes Online Community, let alone since I was diagnosed. Here’s to more chances to learn, meet, and grow at gatherings around the world.

12. We’re giving more, and in more diverse ways than ever before. We may not be any closer to a cure (or we may be closer), but Spare A Rose/Save a Child, Big Blue Test, JDRF and ADA bike rides, and much more have all helped to provide additional revenue and additional ways for all of us to invest in improvements in the lives of PWDs, and certainly, hopefully, a cure.
 
 
That’s a heck of a list, and I’ll bet I haven’t thought of everything yet. Care to add something? Turn on the glass half full side of your brain and think about it. What improvements have you seen since your diagnosis?