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

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

A Summer Home in College

Alright, so it's been a long time since my last post but this summer I'm going to create a new habit of updating this frequently. Today's post is about the transition from school to home.
So I'll be the first to admit that while I'm at school my diabetes management is lackluster. I check my blood sugars semi-regularly (throughout the day, don't go crazy) and input carbs as I eat but my regiment doesn't get more detailed than that.
Summer break changes many things, including how I handle my diabetes. Keep in mind I do have a younger brother with type 1 and two loving parents who are used to being full-time diabetes managers for a 14 year old.
When I go home my management goes as follows:
Day 1-5: minimal blood glucose checks, maximum carb counting and inputting, medium lying to parents
Now parents, don't freak out at this whole "lying" thing I just admitted to. It's not detrimental to anyone. But when I come home my parents shift into maximum overdrive with nagging and reminding me to check, to carb, to not eat this and remember to eat that, that sometimes just nodding my head yes and pretending that I did half of the things they ask me about is easier. It won't hurt anyone if I didn't actually have a second helping of salad at dinner, or if I forgot to put in my carb count until I was already sitting down for a meal.
Day 5-7: medium blood glucose checks, maximum carb counting and inputting, maximum lying to parents
Okay this is the peak of the "yes, mom" phase. After reaching the end of the normal week away from school and at home, parents think they are once again in control of everything. Newsflash: I am going into my senior year of college and nine times out of ten the decisions I make and act upon are my own and because of me.  That is not to diminish the love I have for my parents, it's simply a statement of fact. Regardless of my motivation and actual decisions, however, it is crucial for both my sanity and my mom's sanity at this phase to ensure that she believes that she is in control. So I play along and nod my head at appropriate times, of course.
It's also worth noting, however, that this is also the peak phase of annoyance at said reminders. I felt like a drone every time either of my parents asked what my number was or when was the last time I checked, and especially if they asked me how many carbs I put into my pump. I've been at this as long as you have, mom and dad, have some faith.
Day 7-10: medium BG checks, medium carb counting and inputting, medium lying to parents
Once the routine is found and annoyance is only simmering instead of boiling, the system gets better. I improve upon my BG checking because I have my brother to give an example to (note my habits don't change because of my parent's nagging), I keep up a similar routine of carb counting, and my lying turns to a steady medium where I pick and choose what to tell them, but they don't know I'm picking and choosing.
From here on out the summer typically switches between phases of day 5-7 and 7-10.  Being at home certainly improves my diabetes care, which I appreciate, but it also sometimes makes my eye twitch.

Having not been home for the summer in over a year, I notice the change in patterns much more than I did before.  The comments by my mom over the phone while I'm at school, while still grating, are appreciated a bit more. That's not to say that when having the conversation about "making sure you're having protein with dinner, especially when you're making complex carbs like pasta" when in reality I'm making top ramen in my microwave because I have a midterm to study for, I change my tune. I will definitely continue to blindly nod my head yes from time to time.
I am learning to adjust back into home life, however, and am appreciating the diabetes-related reminders more than hate them as the pattern progresses.

I'll keep you updated in the months to come!
Best,
Heather

November woes: how to handle free lunch in college

Diabetes is a daily struggle. I promise I won't fill your newsfeed with a sob story every day of the month, but today I was especially aware of the weight of my disease so I thought I would share.
So much goes into management that no one sees. In the 26 seconds 4-5 times a day it takes me to check my blood sugar, there is calculation and consideration of physical activity, food intake, emotional state, etc. Every time I eat something I think of the carbohydrates and longevity of insulin and future activity. Whenever I feel tired, or hyper, or especially melancholy, I consider my blood glucose level. No matter what I'm doing diabetes is in the back of my mind.
All of this came to mind this morning before I attended a special topics lecture during my lunch hour. Food was provided- something every college student gets excited about- and while I was trying to take notes in a history class I found myself instead thinkinga bout what they would serve, how many carbs I might eat, and whether I cwould need to bolus for the meal before heading up to the lecture. It had already been a long morning so I thought about whether they would provide soda and then of course how quickly I'd need to get up there in order to grab a diet Pepsi because there is always less diet than regular (clearly I was desperate for caffeine because I'm a diet coke girl through and through.) All of this distracting me in class because the advertisement said "food provided" instead of "sandwich bar with cookies to be served, 30-70 carbs per meal." Wouldn't that be nice.
Anyway I enjoyed the lecture and guestimated the carbohydrate count for the pizza and non-diet soda they provided fairly well,, but my morning really centered on my invisible disease. Thanks for reading, I hope this snippet of a day in the life helps some people see how 24/7 diabetes is. Happy Blue Friday!!

Low-key preparation

You know those days when everything seems to be happening at once? Your phone is about to die but you're in the middle of a conversation with your mom whom you haven't talked to in several days, while you're attempting to work on an assignment that only requires 15% of your attention so you can semi-effectively write while "hm"ing and "uh-hu"ing to your mom, and five of your friends just walked down the hall and are excited to see you because you've been MIA all day due to your full schedule.  On top of it all you know that as soon as you finish the conversation with your mom you have to write a 4-5 page essay and save the world from ebola all while trying to balance your social life.
College is challenging in many ways, especially in the middle of a semester, but diabetes makes it far more complicated. Because while you're on the phone and typing on your computer and actively avoiding your loud friends in the hallway you start to feel shaky and everything starts moving in fast-motion.  A cold sweat begins on the back of your neck and you can't do much about it at the moment, but you can feel a low blood sugar coming on.  So you quickly finish up your conversation with your mom and pause in typing on your computer to grab a juicebox and packet of skittles, rolling your eyes at the irony of the perfectly imperfect timing of such an occurance. Of course I would go low right now.
That's the thing, though.  Diabetes doesn't concede to your demanding schedule.  I realized while I was dealing with my low BG this evening that complaining and crying about the woes of diabetes doesn't help deal with the problem at hand, nor does it keep the disease from inconveniencing me again.  In fact I was lucky that I was in my room when it happened and had immediate access to my stash of juice and skittles, because if it had happened an hour earlier when I was running around campus the low blood sugar would've been far more dangerous.  It's being prepared and knowing your body that helps with the lows, prevents them, and ensures that when the inevitable happens you're able to handle a drop below your target number no matter what life throws at you.
So this evening, after I had stopped shaking and had double-checked my blood sugar to make sure I was in the right range, I made sure that the next time it happened I would be equally prepared. I added a pack of skittles to the side pocket of my backpack and monitor case and made sure my gym bag had a juice box.  I triple-checked that my glucagon was closeby and that my friends knew where it was.
While the situation was initially an inconvenient additional stress to the evening, I decided to take it as a reminder that being prepared makes treating a low blood sugar take only 15 minutes of waiting for the juice to kick in instead of an hour of popping skittles and checking that I had stopped shaking because it took me 15 minutes to find my supplies while I continued to drop.
For those of you who live busy lives like myself and are living with such a disease, I cannot stress the importance of preparedness. It's easy to forget, especially after living with the disease for so many years, how important such precautions can be.  In our case it can be life or death, so double and triple checking everything every once in a while is for the better.
My diaversary was a couple of days ago, 11 years strong, so the importance of advocacy has been on my mind more than usual the past week or so.  Knowing that your friends are prepared is just as important as your own preparedness- it doesn't do you any good to have skittles in your purse if your friends don't know where they are and you're imobile.
Anyway, I'll step off of my soap box now.  Carry skittles.
Best,
Heather

The Highs and Lows of College Life

A day in the life

Pros and Cons of bringing your average blood sugar down:

Pros:

• lower A1C
• more energy
• higher metabolism
• healthier
• better circulation
• basically everything
• 
  

Cons: feel like death the moment you hit 300

All of the doctors and all of the science regarding diabetes management tells us that a lower average blood glucose is good. People who live with the disease concur with science, thank god. However living with the disease is far more difficult than the doctors make it seem. Whenever something, even the most minuscule of things, changes in your life you’re hit with a surge of worry regarding the affect it might have on your blood sugar. Maybe not everyone with diabetes can attest to this feeling, but I definitely can.

Going back to school for spring semester, for example. I’ve been back for less than a week and my blood sugars have already seen dramatic changes. I've had more lows than I had my entire christmas break and I'm feeling more energized with the lower blood sugar average which is fantastic.  This evening however I had a high blood sugar- not dangerous but not much higher than was normal during my winter break full of cookies- and felt lethargic, dehydrated, and nauseous to the point where I had to lie down in bed for an hour and focus on my breathing to keep from throwing up.  To make matters worse I was just coming back from grilling up some delicious-smelling chicken in the community kitchen and all of the smells that followed me into the room were giving me a migraine.  It was horrendous.  

There’s nothing worse than dealing with a bad high blood sugar, and there’s nothing worse than having no one at school to vent to about it. Sure you could complain about feeling like utter crap but your non-diabetic friends are not going to understand why, or really feel for you, like someone who’s been in the exact same situation would.  It’s really tough living with diabetes in college sometimes because it is an invisible disease and I feel bad complaining about it. I feel like a broken record when I go to my friends and pull out the “diabetes card” in conversation, but the unfortunate truth is the majority of my problems revolve around the disease. I’ve had diabetes for over a decade now and I have yet to perfect my treatment. It’s mobile and ever-present and often unpredictable, leaving you feeling lackluster whether you’re suffering from a high blood sugar or a low.  There are not-so-pretty days dealing with diabetes and today was one of them for me.  Thanks for reading my rant.

Best,

Heather

Sugar, spice, and everything nice: finding an adult endocrinologist

It's been a while I know, but I've decided that before the start of the year I'm going to write another post and then I can make it my new year's resolution to keep it up to date with all of the woes and wins of my life as a college student living with diabetes.  This post is going to be a bit long just because there's a lot going on in my life relative to diabetes care.
As a twenty year old young woman, I am at the age where it is becoming less socially acceptable to have doctor appointments at Children's Hospital. It was a sad day when my endocrinologist pointed that out to me, but it's very much the truth.  That being said, finding an endocrinologist is quite the task. There are factors that go into the search for an endocrinologist that do not go into finding, say, a dentist or a regular physician.  There are even more factors dealing with the mobility of college life and the transition from home to wherever life may take me. These many factors create a long list of questions and a wild goose chase to find the mythical perfect adult endocrinologist that can fit in my pocket and go wherever I decide to go. Sadly, there is no such thing (trust me, I asked.)
It started with a list of names that my endocrinologist at Children's suggested.  While I go to school about an hour south of Seattle it's still fairly close to where I live, so there was a pretty large demographic to cover in terms of private practices and other hospitals that may offer diabetes-related care.  She gave me a list of people practicing medicine with the University of Washington, a few local practices that are closer to home, and a select few people who may be viable options closer to school.  Then she assured me that I needn't be in a hurry to find a new doctor, but that I should ask around and do some research on who and what I'm looking for when I decide to make the transition.
Next came the phone calls.  The endless ringing and holding and pressing buttons to get to a real person only to be directed to 12 different people before being sent back to the receptionist you first spoke to...that was the worst part of the whole process. It still is the worst part of any doctor's office, in my opinion.  I had to call my regular physician, my insurance company, all of the doctors offices that I might be interested in and then repeat the process to make sure that the doctor was available, that he or she was covered by my insurance, and if I wanted to schedule a consultation that my doctor submitted a referral.  Ugh, the process was torturous.
Before submitting a referral request I finally settled on a doctor that I wanted to sit down and talk with.  That one doctor required a referral from my regular physician and my current endocrinologist, as well as confirmation that my insurance provider worked with the company she was associated with.  Not only that, but the number of questions I need asked before I can settle on an endocrinologist can't really be answered over the phone by the receptionist.  Thus, we schedule a consultation to discuss all of those important matters.  This process began in August, when I was first given the list and started looking at my options, and I called to schedule a consultation at the end of November. My appointment is at the end of January.
However meeting with the potential endocrinologist will not be the end of my worries, because as I am a busy college student my A1C is sub-par and as my current endocrinologist pointed out, the doctor may judge my diabetes management soley on that number. If that were the case throughout the 11 years I've lived with diabetes god knows where my self-esteem may be; as I'm sure those of you reading this who are living with diabetes know, treatment is no exact science and I've had quite the roller coaster.  So in order to be taken seriously by this new practitioner my A1C needs to be as close to perfect as I can get it in under a month.
Needless to say this long, drawn out process that I am still going through (I'm crossing my fingers that I like the practitioner; I really don't want to go through all of that again) isn't one I'd wish on my worst enemy, and yet it's a process that has to be done for most of us college-aged kids living with diabetes.  For those of you who have already undergone this transitional process and have found an adult diabetes care specialist that they work well with, I commend you and I envy you.  For those of you who are about to embark on the journey, may the odds be ever in your favor.
I'll keep you all updated with the progress in the Search for Heather's Endocrinologist in the weeks and months to come!

Best,
Heather

Ten Years Ago Today

Ten years ago today I was diagnosed with Type 1 Diabetes. My diaversary isn’t something I usually celebrate, but a decade is a momentous and celebratory feat. I’ve come a long way since my diagnosis in carb counting, bolusing, and life-living with diabetes as a piece and not the focal point.  I’ve pumped my way through grade school, junior high and high school and I am now living a near-independent life with diabetes as a college student. Diabetes is no picnic. There have been countless tears shed and many punched pillows as a result of the rollercoaster that is diabetes management. Despite all of the difficulties diabetes has presented in my life- or maybe because of it- I have a life I am proud to be living.  My family and friends who have stuck by my side through incoherent babbling while low and senseless irritability while high mean the world to me.  There are so many experiences I wouldn’t have had if not for my diabetes. So many amazing people I’ve met might never have been in my life were it not for my non-functioning pancreas. My passion for advocacy, even my enthusiasm to major in political science may never have come to the surface. Although I often blame diabetes for ruining my social life or mood of the hour, it has also enriched my life in more ways than I can count.

            So on my ten year anniversary of my diagnosis I will focus on the many positives. I can look back on the many advances diabetes management has made in a decade and look hopefully at the next ten years. From that first night in the hospital, walking around with my mom well past midnight, I know I would only let diabetes be a reason to improve both myself and the awareness of the people around me. It’s nice to look back and feel that I did- am still doing- just that. Here’s to ten years.