Loud Voices Get Noticed

Alright, the moment you've all been waiting for: Heather Talks About Advocacy

I know, this is kind of off-tune from my typical blog posts. But if you don't know much about me, know this: I am super passionate about advocacy. Diabetes advocacy, specifically.

Want to know why? It's because of that good-for-nothing part of my anatomy that floats around doing nothing all day.

My pancreas, in case you didn't catch that. We've all got one- that is, unless you for some reason had yours removed. I've thought about it on occasion but it wouldn't do any good and it'd make my medical expenses even more extravagant than they already are.  Anyway, a solid few years ago, my pancreas decided it was done working and I started on this thing called insulin. I've been hooked ever since.  It's not addictive, but I am not exaggerating when I say I would die without that drug.

That is what I tell my legislators when I talk with them about diabetes priorities. I tell them that yeah, research funding is important. You know why? Because diabetes sucks. And on top of that, it's expensive. And on top of THAT, it affects over 30 million people nationwide.

I sometimes feel alone in the struggle of managing my diabetes, as I'm sure many of you also do. And that's with a sibling in the same house living with the same illness. But statistically speaking, every 21 seconds someone in the United States is diagnosed with diabetes. That's a lot of people. And while that stat isn't specific to type 1 diabetes, the cure affects both type 1 and type 2. So I'm all for finding a cure for everybody. Amiright?

I first began my advocacy journey in junior high. I believe I was in 7th grade when I attended my first Teen Leadership Council meeting at the local American Diabetes Association's office. There was a decent group of us: probably 10 or so kids my age or older who were interested in getting involved in the ADA chapter. We bonded and brainstormed. It was my first real experience in activism, and man was it exciting.

The same year I began volunteering with the ADA, I attended my first Day at the Hill in Olympia, Washington. We had schedules created with meetings with each of our legislators, from the Senate and House side. I actually met with a number of representatives. And not only was I prepared with my statistics and stories about the good, the bad, and the ugly of my diabetes journey; I was also among lots people living these same things, all sending the same message: this is important.

And it is SO important. Not only are the legislative priorities, like increased research funding and insulin affordability, important to reiterate to our legislators- because they are- it's equally important that these people representing you in government see the faces of their constituents and hear the requests from the people living in their districts, facing these problems firsthand.

I continued my work with the ADA through high school and into college. The start of this blog, in fact, was initiated after I finished my stint as the National Youth Advocate for the ADA in 2013, where I travelled the U.S for various events on behalf of the Association, advocating for diabetes awareness and youth-specific priorities like the Safe At School campaign. It was an incredible experience. I was forever changed by it. And the ADA was a huge factor in my decision to pursue my degree in Political Science, in truth.

My story is one of many, of course. I've told it many times at various events, and I've shared it with friends and family for years. I don't write this post to boast or whatever. The point is that once you get a taste for this advocacy thing, it's kind of addicting.

And your voice really can make a difference. If there's anything I've learned from this current administration, or my 4 years of studying the political system, it's that people have to speak up for what they want and need their government to do. And if we think that diabetes should be a priority when considering health care, or drug pricing, or research funding, we need to make that message loud and clear.

Alright, plug over. If this post has inspired you to check out advocacy in your area, though, I encourage you to visit www.diabetes.org/advocacy. The ADA has a bunch of super helpful resources on there to get you started.

ADA Call to Congress, March 2018

Go forth and prosper,
Heather

Springtime Nostalgia- a look back at 14 years with diabetes

Hi all-
Today I'm feeling extra-nostalgic about the olden days of diabetes care. I know I'm hardly the veteran diabetic that has seen it ALL, but in 14 years with the disease I like to think I've seen quite a bit.

I recently took a week off from my CGM (I use the Dexcom G5, by the way) because I wanted a break from the constant onslaught of information it gives me, and I wanted to hit a hard refresh on the way I look at the numbers it spurts out at me. You see, and those of you who wear CGMs know what I'm talking about, sometimes all of that information becomes white noise.

So I took a seven day break. Now I've taken a couple of days off- I usually do, in fact, in between new CGM sites- but never an entire week. And a few extra days sticking your fingers seven to nine times a day and never REALLY knowing what your BG is without going through the entire process is a much bigger deal when you're doing it for a week versus a day or two. So during this week off, I had time to reflect.

Diabetes care has made leaps and bounds of progress even since I've been diagnosed. I still use the same brand of insulin that I did when I first began dosage (the price has spiked astronomically, but that's a whole nother post/rant...) but the technology that surrounds the treatment is completely different. When I was first diagnosed with type 1 diabetes, I wasn't allowed to have an insulin pump. It was a new(er) technology and the insurance companies didn't feel it was safe to use on children. Isn't that interesting? A life-saving technology that, in today's world, is more common than not in treating people- children especially- with diabetes was once thought to hinder diabetes care. It took a little over a year and a half before we convinced insurance to cover an insulin pump.

The insulin pump I first wore doesn't even exist today- to be honest, I can't recall the name of the brand. But it was purple and clunky and I loved that thing.  I've been through probably eight or nine insulin pumps in my 14 years with diabetes. Not all different versions, but new-to-me pumps at least. I've seen at least 4 technological upgrades that I can recall, but I'm sure there were even more than that I'm forgetting. And far more to come. Although I only used long-acting insulin for a little over a year, I know the brand names and different choices of such a drug have changed since I was first diagnosed. The glucometer I used in 2004 looks ANCIENT compared to the one I have in my purse today. And huge, in comparison, as well.  The near-instant gratification of touching the side of my fingertip to a test strip and reading a number is far faster today than it was way back when. I barely need to get any blood on the test strip today, compared to my original meter. Even the thought of a Continuous Glucose Monitor sounded like something out of a sci-fi novel back in the early days of my diagnosis.

It's incredible the changes that can happen in a little over a decade. Amazing, really. And looking forward, the stuff that's still to come is just as impressive. I just saw on my facebook newsfeed that the Dexcom G6 is finally FDA approved, and that it'll have the potential to partner with an insulin pump. I have friends who have tried out actual, usable technology that combines the two in an "artificial pancreas" study. Medtronic has its own closed-loop system on the market.  You newbies don't know how good you've got it! Haha.

I am so excited to see what this next wave of innovation brings to diabetes care. I'm also going to fight as hard as I can to make sure everyone who should and can know about it, and benefit from it, is aware of the resources available. Because what good is all of this innovation if no one uses it?

I'll be writing another post in the next couple of days about why I care so much about advocacy (spoiler alert: I'm real passionate about this), but today's post is just a trip down memory lane.

The week I was brought in to the hospital with a diagnosis, it was Holy Week.  I remember the first question I asked my endocrinologist, in all seriousness, was whether or not I'd be able to eat my chocolate bunny.  I still worry about that some days- because chocolate is really important to my mental strength sometimes- but the beauty of technology and innovative diabetes care is that yes, we can have a piece of a chocolate bunny without going into DKA.

Happy Easter Monday, everybunny!

Signing off,
Heather