Advocacy Works.

I suppose we’ve all become jaded a bit over the years. When you ask for intelligent changes to policy or rules, you get used to having your concerns ignored, sometimes validated, and mostly not acted upon.

But a recent announcement flies in the face of that argument, and before any more time goes by, I think it’s important to talk about it.

The news, which you may have heard: the U.S. Centers of Medicare and Medicaid Services (CMS) has agreed to allow seniors on Medicare to view CGM data on their smartphones.

As Diabetes Patient Advocacy Coalition noted, this is pretty big news, and it’s thanks to advocacy of this organization and others, as well as individual advocates across the country, that this injustice has been righted.

There are a couple of reasons why I wanted to talk about this.

To begin with, this is how advocacy is supposed to work. In this instance, people saw that seniors on Medicare were being denied the right to use their smartphones as a medical device. Those advocates banded together and took their message to CMS, who were empowered to consider the advocacy message and act on it. And they did.

Second, I wanted to talk about this win because it’s a win. So often, we advocate for causes, and our causes remain causes for years until some movement happens on them (and that’s the most times I’ve written “causes” in one sentence in my life). Once our cause is helped along by a decision or a product launch or something else, we move on to the next cause so quickly that we almost forget the fact that real progress was actually made.

I don’t want that to happen here. Let’s stop and smell the lithium ion of our cell phone batteries and recognize that something pretty great happened here. And you and I had a hand in making it happen.

Let’s take a moment and remember that advocacy works. And let’s remember to thank all those responsible for making it work.

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8 Things: Wordplay.


I’m a fan of words. Their spellings, their meanings. Learning to live with diabetes is like learning an entirely new language.

Here’s what I mean by that, using 8 examples:
 
 
1. Diabetus
I always hated when people said “diabetus” instead of “diabetes”. It’s the last two syllables… “beat us”. I don’t like the idea of living with a chronic condition that has that kind of language in its very name.

2. Medical Devices
There are more medical devices helping us to succeed with diabetes than ever before. Some people name their Dexcom Dex, or their pump some other name. If you’re someone using an Omnipod, do you call yourself a Podder? Are you Podding? I can tell you that I am definitely not Vibeing…

3. Co-morbidities
I don’t know about you, but I don’t even want one morbidity, let alone two or more. I might settle for 1/2 a morbidity, but that’s all. No more. I can only accept so much. I wonder if this is that bargaining part of bargaining, denial anger, depression, and acceptance we hear about?

4. Target range
To be honest, it would be a lot easier to hit the target if the target didn’t move constantly throughout the day. That’s the way it is with diabetes, every day. This is a term I’d love to find a replacement for.

5. Basal
When I wanted to begin on an insulin pump, I must admit that I didn’t even know what a basal or a bolus was. No endocrinologist I ever saw up to that point described dosing insulin in this way. Once my current endo educated me, I had trouble for a week or two remembering which was the basal and which was the bolus. So I tried to think of basal as the herb… you know, basil. I imagined an herb leaf every time I logged in what my basal rate was for the day. Don’t knock it… it worked.

6. Bolus
I don’t really have much to say about bolusing, except that I get ticked off every time autocorrect changes it to “blousing”.

7. Advocacy
Like many people, I used to think that advocacy was too big and too difficult for someone like me. The truth is that advocacy is easier than you think, it can take place in many forms, and it usually has a positive effect on both the subject and the practitioner of said advocacy. So let your advocacy loose… you’ve got a lot to give.

8. Lancet
Another word I don’t like. Probably because it has elements of onomatopoeia to it. In other words, the word itself sounds too much like what it does, which is lance the skin to get blood for a glucose test. I wouldn’t mind the onomatopoeiac nature of it so much if it were something a little nicer.
 
 
And there you have it… eight diabetes words, and eight ways of looking at them. I hope your weekend is fabulous. Talk to you next week!

Nearly Wordless Wednesday: Landfill filler.

Happy Hump Day everyone… I posted something like this years ago, and thought I would post this from earlier in the week, so you can see exactly the amount of shit I throw away when doing a site change for my insulin pump.

To be fair, not all of this goes to the landfill. I separate what I can for recycling.

Still, it’s a lot.

And please don’t say anything about my dirty placemat…

Like these links.

Welcome to a Friday rundown of some things I’ve read recently from our glorious Diabetes Online Community. I encourage you to check these out, and how about leaving a comment or two for the writers? Sound good? Here we go:
 
 
A couple of weeks ago, I wrote a post about how our diabetes can be different from person to person, and how we have many ways of managing our condition. In the end though, we take what we learn and personalize it to come up with the best life with diabetes we can. The post was titled You do You.

Well, guess what? Renza wrote about the same thing, and also covered the fact that just because I don’t manage my diabetes like you do, I’m not wrong. Neither are you. I had to add a reference to it here, because it’s better than mine and because I like strong language when the situation calls for it. Renza’s post is titled:
You do You
 
 
Are you a dude? Are you interested in knowing more about dudes with diabetes? It is Men’s Health Month, after all, and Wil Dubois at Diabetes Mine has a great rundown on how diabetes affects everything about being a man:
Talking Sense to Men with Diabetes (During Men’s Health Month and Beyond)
 
 
I’m not a parent, so I’m not a parent of a child living with diabetes. But if you are, or if you were ever parented as a child with diabetes, you’ll want to read this from Meri, because it’s true and it will make you feel good:
A step by step guide to perfection
 
 
Finally, Laddie at Test, Guess and Go wrote something that pretty much sums up my life with a CGM these days. I’m glad I’m not the only one:
Living on Planet Dexcom
 
 
Enjoy your weekends kids… I’m off to D.C. for a diabetes meetup Saturday, then to a play on Sunday. Talk to you next week!

Fun with Fiasp.

As I mentioned in my previous post on this subject, my endocrinologist provided me with a sample vial of Fiasp so I could try it out in my insulin pump. This is only my opinion… before starting or stopping a medication, especially insulin, check with your doctor.

For anyone who hasn’t heard of it yet, Fiasp is Novo Nordisk’s faster acting insulin– in fact, Fiasp stands for Faster-acting Insulin ASPart. It was approved by the U.S. Food and Drug Administration last September. I was able to try it out in my pump for about a week.

When I did an informal poll of this new insulin via Facebook, I got a series of answers. Some people love it, some hate it, some made adjustments, some went running back to their previous insulin. I really didn’t have an idea of what to expect before beginning my trial.

But I did think of some of the experiences shared on that thread when considering my own experience with Fiasp.

To begin with, let’s talk about the faster acting part of the equation. Maybe I’m a little more sensitive than I thought, but the first two or three boluses really hit me hard. Even if it took a little more time to kick in, when it hit me, my blood sugar would plummet.

The science behind this is a combination of Vitamin B3 and an amino acid known as L-Arginine. The first is to speed up the insulin’s absorption time, and the other is to help maintain the insulin’s stability.

After the first couple of boluses though, there didn’t seem to be any more of an impact with Fiasp than there was with the Novolog I’ve used up to now. The only difference I could notice was with pre-bolusing. I like to pre-bolus for a meal, but like anyone else, I’m not always perfect… sometimes I forget.

When that happened, the Fiasp allowed for some forgiveness of forgetfulness, allowing me to bolus late without any measurable post-meal BG spikes.

A couple of people mentioned feeling a burning sensation when injecting Fiasp. I didn’t really experience that. For me, it was more of a feeling like the insulin was thicker somehow, like something oversize was trying to squeeze its way past the tiny constraints of the cannula and under my skin.

Both times I changed out infusion sites while using Fiasp, I found blood about a foot up inside the tubing of my set. I don’t know if this phenomenon had anything to do with it, but blood in the tubing is a very rare occurrence for me.

It should also be noted that I’m using the now defunct Animas Vibe pump, which dispenses insulin at a rapid rate. If I had been using, say, a t:slim pump, which delivers insulin at a glacial pace, the result might have been different. You never know.

As far as in-range or out-of-range blood sugars go, there wasn’t really much difference between Fiasp and the Novolog I use on a regular basis. I had one post-workout BG in the upper 200s (mg/dL), which is not common for me. Otherwise, my highest highs were around 200.

Looking at the entire experience of my time on Fiasp, I can say that there just wasn’t much difference other than what’s noted above. In the end, yeah, there were differences… but not so much of a benefit using Fiasp that it’s going to make me want to go away from Novolog. Especially since Novo Nordisk products are not on my prescription provider’s formulary anyway.

If my out of pocket cost was less than what I’m shelling out now, I might make the switch. Same price? I’ll stick with what I have.

Again, this is just my experience using this drug. I’m not a medical expert. I also encourage you to learn more about Fiasp, by reading THIS from Diabetes Mine and THIS from diaTribe.

You can get additional first person accounts of Fiasp by reading about Julia’s experience HERE and Anna’s experience HERE.

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