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

Pricks and Sticky situations

Yes, I'm talking about finger pricks and keeping sensors stuck on your skin, especially now that the weather is starting to warm up for the summer.

I'm doing a research study for a sensor, as I've stated before, and I currently have two quarter-sized stickers on each of my arms.  The first week was all fine and dandy, save for the re-creation of habits to make sure I checked my blood sugars 8 times daily. I didn't have any issues with the sensors and I went about my normal life (mostly) with the stickers in the back of my mind. Unless people asked about them, I would forget that I had the sensors on.

Week two has proven to be far more difficult. The sensors started to itch, much like normal pump sites do after a couple of days, and the stickers became a little less secure on my arm.  It wasn't until I took a shower this morning, though, and went to go work outside that I realized half of the devices on my arms were on the verge of falling off.

Now it wouldn't have been the end of the world. The sensors coming off is part of the study, of course, to see how effective the device is. However I'm convinced that once one comes off the rest of them will follow and I'll have no sensors left to calibrate before the end of the study. So I did what any rational person with diabetes would do: I went into my medical cabinet and tried to find a bandaid big enough to hold the sensor in place.  I found a bandaid, but my arms are apparently not the tackiest of places to have anything so it fell off within moments. I found athletic tape, but received a similar lackluster result. This was bad news, of course, because I was going outside to do yard work and if I were to sweat on top of a precarious two sensors on my arm they were sure to fall off and get lost in the dirt we were moving around.

Phase two required a bit more creativity.  I couldn't use bandaid glue because I didn't want to damage the device, obviously, and it was difficult to reach around the back of my arm to really effectively apply the glue anyway.  I wasn't desperate enough to use actual glue.  I did, however, have a big stack of flexible tacky cover that I had once used on my pump sites when I was younger.  Back then I would cut a hole out of the material so that the tubing could fit around the underside of the site, but I just put the whole thing atop each sensor for reinforcement, and it worked! I finished my yardwork with all of the sensors intact.


  It had been a while since I'd had to worry about a site falling off or about needing reinforcement for a diabetic device, but I'm proud to say I succeeded in keeping the sensors where they were supposed to be. We'll see what the next few days bring before I take the sensors off on purpose!

Have you dealt with a similar situation in your diabetes care? If so, how did you handle it?

Best,
Heather

You Can Call Me Iron Woman

So diabetes is a rollercoaster; that's not new news to any of you.

When opportunities present themselves, especially regarding research and progress toward better diabetes care, it's typically bad form to turn it down.  That is why I took on the task of participating in a local study on CGMs while I'm home for the summer. Two weeks of wearing 4 sensors, two on each arm, for the betterment of CGM analysis and data seemed pretty cool to me. So I agreed to participate in this study without hesitation.

What I didn't anticipate (spoiler alert: nothing in life is predictable) was that I would be going away for a long weekend at a professional conference to find an internship. But, of course, that's what happened.  Four days of early mornings and late nights complete with nightly cocktail parties and, of course, cocktail dresses, ensued. This normally would not be an issue for me. Give me a margarita and a good conversationalist and I'm good for several hours! However my four sensors, each slightly larger than a quarter and strategically stuck on the back side of each arm, tended to draw attention while in conversation or as a conversation starter at said conference.

Now this normally wouldn't bother me. Talking about diabetes is something I am well-practiced at and comfortable with; I enjoy sharing my story with others and getting my peers excited about the future of diabetes care and the importance of advocacy.  This particular situation, though, made it exceptionally annoying.  When people came up to me and asked about my sensors instead of asking about how I was involved with this particular cause or why I was at this particular conference, my answer was more draining than it ever had been. The frequency of the questions made it even worse. I'm not one to ascribe to avoidance- I'm the least passive-agressive person you'll ever meet- so I didn't shy away from baring my arms and wearing a cute, sleeveless cocktail dress to these parties because a little sensor shouldn't stop me from doing so. I'll take this time to also say it shouldn't stop you from doing so either.  It didn't keep me from wearing what I wanted. It did, however, draw more attention to my arms than to my brains which was the whole point of the weekend. Instead of the drawn out and complicated answer that I'm used to giving people who ask about my life with diabetes, I adjusted.

When someone asked "what is that on your arm?" or, jokingly, "are you a robot?" I'd answer: "They're continuous glucose monitors for a study I'm doing for type 1 diabetes. I'm Heather, by the way, but I do accept the nickname Iron Woman if you'd prefer." Now this answer might sound a bit crass or too sarcastic for a professional setting, but when those people who had the guts to ask me what I was wearing on my arm heard this answer they were delighted by it. Sometimes they'd ask for more detail, which was as draining as you can imagine it would be (because people know a lot less about life with diabetes than they pretend to, unless they're currently living with it), but most of the time they took my answer as-is and accepted that I didn't want to go into detail. The face value of my answer was funny and charismatic instead of sarcastic and mean (thankfully).

So the moral of my post today is that no matter who you encounter in your day-to-day diabetes routine and no matter what questions they ask, you are entitiled to answer in any way you choose. And if you choose to identify as Iron Woman, be that daily or otherwise, I'm right there with you.

Signing off,
-Iron Woman

Dip it Low, Bring it up Slow

So I think everyone would agree that low blood sugars suck.
The whole process of getting low and feeling low just sucks. First, you somehow input too many carbs for a meal or you correct too much for a high BG or you're running so fast from your responsibilities that you work your body into a low. Then once enough time has passed that you forget about this potential cause of said low, you feel shaky and dizzy and clammy and mad at the world for no real reason. And finally, you check and you're 60 and you eat an entire roll of club crackers while trying to remember why you went low in the first place.

In case you didn't catch on, that happened to me yesterday. It's the 5th time it's happened since I've been home for the summer, and let me tell you: it sucks.

I made plans this summer to start eating more healthy, to work out daily, and to feel better in my own skin. This of course goes hand in hand with quality diabetes care, right? Wrong.
Checking BG regularly and eating a well-balanced diet certainly helps with diabetes care and overall health, but there are so many variables in diabetes that throw the whole system off on a daily basis.
Going low is one example. It's a big wrench to be thrown, too. Yesterday, as I said, I went low at 11pm while I was doing a core workout in my room. Not only did my low interrupt my workout plan, but the roll of club crackers I ate totally threw off my healthy eating plan of the day as well, and I had a high BG two hours later.
Now obviously there were decisions I could have made so that my complaints regarding eating healthy are null and void. Yes, there are healthy options to bring up a low BG.  Club crackers, even in smaller doses, would be fine. Fruit leather or orange juice also would have done the trick.
But if you ever go low late at night and enter a pantry where your options are a juice box or a box of clubhouse, I challenge you to go for the juice box and be satisfied. I should consider myself lucky I didn't find more to eat, because it was the kind of low that I felt like I could eat a house and still need more nourishment.

I'm not sure if these series of low BGs are self-caused changes in my regiment or just the causal effect of the universe determined to make my life difficult. It could be my moving home, my change in diet from school to home, the warmer weather (sunshine always makes insulin work more quickly for me), or if I need a change in my settings. It's likely to be a combination of them all.
Regardless of the cause, it sucks.

I'll check in again in a few weeks.

Best,
Heather