Diabetes in a Pandemic as a Millenial (let's unpack that)

 Okay, so first things first, I want to acknowledge that I am very privileged in the way I have been managing my diabetes since my diagnosis in 2004. I've lived with type 1 diabetes for over 16 years now and as a result of that, as well as my incredibly generous younger brother who also has type 1 (both of my younger brothers have type 1, I just see my youngest a lot more frequently and steal his supplies way more often), I've never been short on diabetes supplies. While on my parents insurance I had very little issue getting the latest and greatest technology, and receiving my supplies in a timely fashion.

My time at the top, however, did not last past the age of 25. As soon as I aged out of my parents insurance I wen tonto state coverage, which was a completely different world. As a struggling law student I did not  make enough money (read: any money) to qualify for any private insurance so I was thrust into the world of HMOs. This all happened, by the way, in the middle of my second to last semester of law school and smack dab in the middle of the Covid-19 pandemic (lucky me.)

Getting insulin was, thankfully, not an issue. In fact I ended up paying nothing for my insulin supply- something I'd never experienced before. Beyond the vials of insulin aspart, though, things got more complicated. I was living out of state from my endocrinologist and was under primary care by a brand-new in state doctor, all virtual of course because of the pandemic, which complicated things further. I thankfully had the forethought to order one last round of supplies before I went off of my parents insurance so I wasn't worried until about December 7th regarding my pump and dexcom supplies- but by then I was playing against the clock. 

When I went home for the holidays I wasn't worried. Like I said, my younger brother was generous in giving me whatever I didn't bring with me and I'd thought that I had properly ordered my supplies to be available to me as soon as I returned to my apartment out of my home state. I was wrong. Fresh off the plane after the holidays I had a sensor that would last me at least 10 days and one more pump site that would last me 3. And nothing else. So, that sucked.

I went into problem solving mode, considering my ancient insulin pump and box of extra supplies I had hoarded as a worst case scenario (I know, this was incredibly lucky and I'm so grateful,) I called my insurance and doctor and yelled and cried at a couple of people (I was exhausted and frustrated, okay?) until I decided I couldn't do much else that day.

For the next week I went back and forth between insurance, primary care and endocrinologist, and supplier phone lines, hearing different things form each and no one coming back with anything substantive. So then I got annoying. I called twice a day, first my insurance asking them if they'd received any prior authorization from the doctor (with this form of insurance everything needs approval, and because the doc is out of state apparently that was an issue) and twice a day they'd tell me no. My doctors' office kept sending approval requests to different faxes (after I cried to one particular lady I got the emergency fax line) with negative results. This went on for ANOTHER week. 

I ran out of pump supplies. I did what they say never to do and kept my site on for another 3 (do not recommend it was scary and awful and itchy) days but still no dice, so I put a battery in ye olde insulin pump and started using that in the meantime (thank god I had this because I haven't used injections since like year 1 of my diagnosis). Still nothing from insurance. My doctors office was so patient with me, bless them.

I wish I had a happy conclusion for you but at this point, there is no resolution. I'm on borrowed time on my CGM and using what's left of my emergency pump supplies. The thing is, I get that I'm lucky to have what I have. I'm grateful. But I really wish that the goddamn insurance provider would let me have my goddamn pump supplies and CGM so that I can focus on getting better at my diabetes management rather than fight with old tech, and not distract from my now final semester of law school.

So I'm just tired, y'all. Diabetes sucks. Thanks for reading; I'll update you when (or if) this debacle ever gets resolved.

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

The Battle of the Pancreases

Today I'm writing about the the fun side of living in a household with multiple T1Ds.

There's enough struggle and rollercoaster-riding with one person's diabetes journey, but add another T1D to the mix and it gets all sorts of complicated.

Not all of it is bad, though. In fact being back home with my brother has definitely pushed me to improve my diabetes care in ways I never thought it would. We compete with each other, trivially, in lots of ways when it comes to our diabetes care.

It's been a while since the two of us have compared A1Cs (because neither of us are great at diabetes care and we're both aware of it) but day-to-day BG checking and competing with carbohydrate counts creates a fun dynamic that is unique to the T1D lifestyle.  I can think of a few times even when Dillon, before being diagnosed, noted that he felt left out because the two of us were nagging each other and making digs about diabetes.

The competitive side of both myself and my brother reached new levels when we both got the Dexcom CGM, which has a "follow" feature on our phones. While the program was created to help parents manage their children's diabetes care, by giving them low and high alerts (PS if you didn't know this existed, check it out- it's awesome,) it also allows fellow T1Ds to compare data with each other, which can be fun.

The other day Aiden and I were out adventuring together, and my phone went off with a "fall rate alert" from my CGM (see, I'm telling you, this thing is awesome). Aiden, naturally, checks my phone and starts giving me a hard time about not noticing I was dropping, etc etc, and teasing me about my daily trends. This inevitably led to me checking his data and comparing his daily numbers to mine. Yes, kind of nerdy and maybe a little self-deprecating in the humor department, but we've gotta get our kicks somewhere right?

It's these little moments that act as a spark of light in the darker moments of living with diabetes. I've been struggling the last few days with our middle brother's diagnosis, but this moment of shared laughter and light teasing about something neither of us can really do much about- the fact that our pancreases are broken- made me smile.

So through it all, my fellow T1Ds and family members of T1Ds, I think it's good to reflect on the wise words of one of my favorite disney characters, Mary Poppins:

TTFN,
Heather

And then there were three

AND THEN THERE WERE THREE

So most of you reading this already know that I have type one diabetes. It isn’t something I’ve, really, ever been quiet about and it’s something that I’ve taken pride in embracing and not letting effect my life.  I’ve been living with the disease for nearly 14 years and, while I’ve accepted that diabetes is a part of my life, it seriously sucks.

My brother just got diagnosed with T1D, going into his sophomore year of college. Like, literally the same week he moved back to school. Now there’s certainly not a good time to ever be diagnosed with a chronic illness like diabetes, but I think the universe would agree that the week of orientation at college is right up there with the worst timing ever.  He’s going to have to navigate the entire process of being newly diagnosed while adjusting to his new class schedule, a new roommate, and re-adjusting to the college life in general. I wouldn’t wish that on anybody.

The thing is, though, if anyone can do it it’s my brother. He’s been dealt a lot of crap in his life and he’s taken it all like a champ, and come out ahead of nearly all of it. Even this diagnosis, which for all intents and purposes should have been made two years ago, has taken five years to reveal itself.  His inner strength doesn’t make the situation suck any less.

I try my best to keep positive when I talk about diabetes- because let’s face it, it's way easier to give the negative spin- but today I’ve got a lot of mixed feelings.  Diabetes sucks. Even when you’ve got it under control (for a millisecond) it kind of takes over your life. Dillon has seen that, in me and in our youngest brother, Aiden. So it’s got to be extra scary for him to be dealing with all of that.

And it’s kind of selfish of me to be internalizing at all, but I really do empathize with him. I’ve been in that position, although it’s been a long time since I made the transition. I’ve processed through the whole shindig and suffered through the burnout more than once. So imagining my little brother dealing with all of that for the first time is tough.  It’s even tougher for him, for obvious reasons.

Being diagnosed with diabetes is difficult for the entire family. It’s an adjustment- even when two of the three siblings in the family are already living with it. And it’s a personal journey, which I think is the most important thing to remember. We each deal with it in different ways.

So I’ll finish this post (which is way overdue, sorry…) with a few wishes for my brother, and for all newly diagnosed diabetes patients (brand new or T3 turned T1D):

I hope that your journey is full of salty and sweet, so that while you endure you remember that there are moments to savor as well.

I hope that each setback is met by reinforcements, between your friends and your family, backing you up and picking you up off of the ground.

I hope that you learn about yourself as you learn to navigate this new way of life.

I hope that you embrace your own experience and own that your diabetes is YOURS, no matter how many people around you are there supporting you or fighting their own dragons (however similar).

and finally,

I hope that you grow to love your pump, your finger pricks, the highs and the lows, and I hope that you find a community that you surround yourself with who all do the same.

Love and well wishes,

Heather

Type 1 Diabetic

Big Sister

College Grad