Curing Type 1

As walk season and Diabetes Awareness Month get closer, and in light of my recent experience at the AADE (American Association of Diabetes Educators) conference, I’ve heard a lot of people talk about what it would mean to cure diabetes. To me, curing diabetes is about much more than being able to eat whatever I want, or about not being “different” in some way because of my diabetes.

Why do we need a cure? THIS is why.

Because type 1 diabetes is a disease that we didn’t ask for, didn’t cause, and that pervades each and every aspect of our lives.

Because our health relies on our ability to mimic a finely-tuned feedback loop of blood glucose and insulin supply between the brain, hormones, and the pancreas. (And let’s face it, we diabetics are good, but we’re not quite THAT good.)

Because we endure physical pain, callouses, bruises, and scar tissue to dose and deliver the life saving medication we need daily.

 

Because we get used to the needles, but they never stop hurting.

 

Because none of us can remember the last time we got a good night’s sleep. Because parents of children with diabetes should not have to wake up at 12 AM and 3 AM every single night. Because a CGM alarm jolting you awake 5 times a night is 5 times too many.

Because as I write this, my blood sugar is 322 after my third infusion set change of the day. Site change # 1 felt like I was being stabbed in the side with a burning sword, and site change # 2 came out with a bloody cannula. Here’s hoping site change # 3 was a success so I can go to sleep soon.

Because one autoimmune disease isn’t enough- Type 1 puts us at risk for hypothyroidism, Celiac disease, and premature rheumatoid arthritis, among other things.

Because I shouldn’t have to read that my disease puts me at a much higher risk for developing all sorts of infections in my microbiology textbook.

 

Because we know, in the back of our minds, that despite our best efforts, we could still go blind, or lose limbs, or go through kidney failure. All because of this disease we didn’t ask for and didn’t cause.

 

Because sometimes, the ability to manage your disease depends on your ability to pay for the supplies and medications.

Because we have to fight our insurance companies tooth and nail sometimes to get what we need. It’s an interesting experience, telling someone who knows nothing about diabetes that not having a certain medication/device is a health hazard and safety risk.

Because I’ve got enough charts and notebooks of blood sugar patterns and insulin rates to wallpaper my room- none of which have done me much good, thanks to the unpredictable nature of blood glucose.

Because the simple act of leaving your house for the day requires a completing a lengthy checklist, and forgetting any single item could be catastrophic.

Because “grabbing a bite to eat” and “going out for a run” are never just grabbing a bite to eat and going out for a run- so many factors have to be considered to complete either activity safely. And so are driving, flying, going on vacation…

 

Because type 1 diabetes is a disease that impacts physical, mental, emotional, and social well-being. A diagnosis changes your entire life, and the lives of those close to you. We are strong, we are fighters- but we need a cure.

Diabetes on the Run!

After a bit of a hiatus, I’ve finally returned to my blog! I’ve been extremely busy balancing work and a microbiology class, and just haven’t been inspired to write about anything in particular- until now!

One of the other things I’ve been doing this summer is training for a 5K. I’ve tried to start running a few times in the past; it was never something I stuck with, for one reason or another, but running was always something I dreamed of being good at.

Well, maybe “good” is an overstatement- just being ABLE to run a few miles will be good enough for me, no matter how slow!

Diabetes was actually not my main concern when I started my program. I figured “I know people with diabetes who run marathons- how hard could it be to manage my blood sugar for 3 miles?” It turned out to be a bit harder than I thought. Up until now, my main strategy for preventing lows during exercise was to cut back on my insulin for whatever came before my exercise, or to eat a snack before going out. I should add that neither of these worked very well for me- cutting my insulin would result in a sharp spike, and a sharp drop once I started exercising, and eating a snack without insulin usually led to cramps.

But I didn’t know what else to do, and so I stuck with my terrible low-prevention strategies for quite a while. Until I got some advice from an experienced runner with diabetes a few months ago, who said to never run with insulin on board. That ONE suggestion has been a lifesaver! If I can wait until at least 2 hours after my last bolus, I don’t drop as quickly once I start running, and experimenting with temporary basal rates has also helped.

Sometimes my levels run a little higher than I’d like, and sometimes I’m a little too low for comfort, but I’m sure I can even them out, with a little more experience. Having to run with a Dexcom, juice box, glucose tabs, and my meter is also pretty annoying, but I’d rather be safe than sorry- “sorry” being, stuck two miles from my house with a low blood sugar and nothing to eat or drink!

Running (and balancing that with other activities like swimming, hiking and yoga) has enabled me to cut back on my daily insulin- I’ve decreased most of my basal rates and ratios, and I’m expecting a drop in my A1C as well. I’ll find out in a few days- fingers crossed!

While I’m not a great runner yet, the positive changes I’ve seen so far in both my endurance and my diabetes management are encouraging me to stick with it. It will be challenging, but I’m ready to take it on, since I’m finished with school for the time being. I’m looking forward to running in the fall, once it gets a bit cooler- of course I picked what must be the hottest summer on record to start training! I also find running to be a nice stress reliever- a quiet time for reflection or to think about nothing at all.

Here’s to longer runs and fewer lows!

DBlog Week Day 1:Why I’m Here

I am so excited to be participating in DBlog Week 2016! This is my first time writing for DBlog Week, and also my first post as a new college graduate (hooray!). Today’s topic asked us to reflect on why we blog, and what message we are trying to send.

I started blogging almost a year ago, after attending a student leaders’ retreat with the College Diabetes Network. I had never gotten to interact with so many people my age with diabetes before- I didn’t know anyone growing up, and my university’s chapter of CDN was very small. Being around 30 other people who were all checking their blood sugars and giving insulin at the same time I was had a much greater effect on me than I expected: I had never felt out-of-place doing these things before, but being surrounded by others doing the same things I was gave me a profound sense of “belonging” to the group, and to the diabetes community as a whole.

After I went home, I knew I wanted to get more involved in the diabetes community; several people I met at the retreat wrote their own blogs, and I decided it was something I’d like to try. Originally, my focus was to reach as many people as I could with my writing, to contribute to the DOC, but writing for my blog has slowly shifted to become something therapeutic for me, especially since I decided to expand my focus to my experiences dealing with social anxiety and relationships in college.

Making the decision to blog, in itself, demonstrated how much my self confidence has grown over the past few years. I often joke that I was “scared of my own shadow” during freshman year of college, but it’s not far from the truth. Expressing my thoughts and feelings on such a public platform is something I never would have considered even a few months before I started this blog- but here I am, putting my writing on the internet!

I want people who read my blog to know that diabetes (or any life circumstance) shouldn’t stop you from doing something you want to do, while also conveying that everyone manages and reacts to their diabetes/other challenges differently. No one experiences EVERYTHING about it in the same way, but we all share enough to feel connected to each other.

We are Fighters

The thing about fighting diabetes battles is that they teach you not to give up.

Living with diabetes is about battles. Some are big and some are small, but none is more or less important than any other. We fight for ourselves- for our lives, our health, for a stubborn high blood sugar to come down- and we never stop.

But many of our battles are about others. We fight for better public understanding of T1D each time we address comments like “did you eat too much sugar when you were younger?” We fight for accommodations, whether at school or work, to ensure our safety. And we fight insurance companies and pharmacies, who don’t always understand the paramount importance of timeliness and accuracy in regards to filling prescriptions and shipping orders.

I’ve had diabetes for so long (15 years in July!) that most days, I don’t fully comprehend the amount of time I spend taking care of myself and proactively ensuring that I receive the supplies I need. But some days- like today- the reality of the energy it takes to manage diabetes washes over me.

I use a Dexcom G4 CGM, and I have for just over a year. Now, I’m the kind of person who reads instruction manuals cover-to-cover, so I’m not sure how I missed the fact that transmitters have a finite battery life, and should be replaced every six months. Guess who hasn’t replaced her transmitter in that year of CGM use? Yours truly.

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Two weeks ago, I received my first “transmitter battery low alert” and, upon finding out that getting a replacement would require documentation from my doctor’s office and insurance approval (why this is necessary for something I already own and just need to replace, I have no idea), I did everything I could to speed up the process. An obscene number of phone calls later (last time I had to get paperwork pushed, the process took nearly 3 months. I don’t have 3 months), my replacement transmitter arrived at my house. And my distributor sent me a G5, despite several phone calls during which I indicated I needed a G4.

I was exhausted. I was livid. But the thing about fighting diabetes battles is that they teach you not to give up. Even if it takes a while, you will always come out on top. So I got back on the phone with my distributor, and, after a little help from my parents (AKA the greatest backup ever)  I’m pleased to report that I will have the correct generation transmitter within 48 hours.

One of the most valuable things diabetes teaches you is how to advocate for yourself- and not give up. The best part about this skill is that it’s applicable to the rest of your life as well. Closed class you want to enroll in? You’ll make it happen. Feel like you’re doing more than your fair share of a group project? You know how to address it. If I’m addressing a diabetes issue (like when a prescription is delayed in being mailed due to an error on the pharmacy’s part), I know that I am in the right- and I carry that confidence over to advocating for myself in non-diabetes situations.

So, the bottom line is- follow up, make phone calls, do whatever is necessary to make sure YOU get what YOU need, don’t assume that everything will be pushed through correctly (unfortunate but true), and DON’T. GIVE. UP! 🙂

 

Constant Vigilance, or, Being Tethered

I’ve spent the past week or so fighting with some darned persistent high blood sugars. Waking up to the jarring vibration of my Dexcom has become almost ritualistic: 1am, after over treating for that low before bed; 3am, when I’m still 260; 5am, when the second correction bolus only brought me to 230; and 7am, when all the insulin from the night decides to kick in at once and I need a juice box. And the juice box, coupled with the dawn phenomenon, will send me soaring again, so there’s another alarm by 8:30.

I don’t wake up in the morning feeling well rested, needless to say. I’m awake and alert when my Dexcom goes off in the middle of the night; because I HAVE to be. Being groggy while trying to treat a low/high can lead to some questionable decisions (see: eating the entire kitchen when your blood sugar is actually 90).

These highs have left me feeling sick- so sick I don’t even want to touch the water my body needs to replenish. I can barely drag myself out of bed; if I have someplace to be first thing in the morning, it’s a struggle to get going.

This image has stuck in my head for quite a while, and this finally seems like the post to use it in.

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THIS sums up how diabetes can feel sometimes: like being imprisoned, knowing what you could be doing or how you could be feeling without a disease that requires your brain to do the job of your pancreas. The brain does a lot of wonderful things, but it just wasn’t meant to calculate insulin doses that account for EVERY possible blood sugar-affecting variable. Even with all of the devices we have, we are imperfect at best.

This image speaks of being tethered. We are tethered (in a mostly literal sense) to our meters, our pumps, our CGMs, in the name of- I can’t think of a better way to say it, so thanks Mad-Eye Moody- CONSTANT VIGILANCE. We can’t leave the house without a meter, we can’t be more than 20 feet away from a CGM, and we are very literally attached to our pumps- you can’t go anywhere without a visual reminder of diabetes. Even to sleep. I’m very thankful for my Dexcom at night, but sometimes I feel overloaded and overwhelmed with the reminders that for all my vigilance, sometimes things still don’t go my way.

This image speaks to the fact that as much as we may not like it sometimes, this is our reality- being constantly surrounded by medical devices, waking up every night, intensely planning our days around diabetes. But research is bringing us closer to an un-tethered experience of having diabetes; therapies to regrow and preserve insulin-producing cells are being created and tested, and are showing a lot of promise.

One day, we may not be tethered anymore. And what a day that will be.

Thanksgiving with a Side of Diabetes

Speaking as a regular person, I love the holidays. I love spending time with family, the lights, the music, the decorations- November and December are my favorite months of the year.

As a person with diabetes, I like the holidays a little less. I am extremely wary of any food that is starchy, fatty, or is something I have not prepared myself and don’t have nutrition info for. These kinds of foods are abundant during the holiday season, and it’s nearly impossible to keep blood sugars in a normal range while also eating what you want to. Thanksgiving can be especially stressful when trying to balance diabetes with celebrating the holiday like someone with a functioning pancreas. In my opinion, though, this is one of those days where it’s okay to let things slide a little bit! I think my control may have slid a little too much this past Thanksgiving though…

I started off the day around 180. Which quickly climbed to 260. I’m still trying to find the right basal pattern to combat the rise I see every morning after I wake up, but the added caffeine from my newfound love of coffee is making this a lot worse (I think a switch to decaf is in the cards). I ended up over compensating for the high (note to self: don’t correct 3 times in 2 hours) and had dropped to 46 by the time I arrived at my cousins’ house. So naturally I tore into the appetizers (and some orange juice) like my life depended on it- which it sort of did.

Unfortunately, I didn’t keep very close track of what I was eating, and didn’t remember that my blood sugar usually rises slowly after a low. By the time we ate, my blood sugar was in the low 100s but rising. Add in all the sugary/starchy side dishes and…you get the picture. Once the desserts were put out, I was steady at 300. Which meant no dessert for me! Thankfully after some aggressive correcting, I dropped to 120 and stayed there until the next morning. WIN!

So my blood sugar yo-yoed all day. It doesn’t happen every day, and neither does Thanksgiving. I spent a wonderful afternoon with my extended family, and didn’t obsess (too much) over my diabetes. I know there will be many instances during the next few weeks when I will have to decide whether to eat something REALLY yummy looking and have to deal with “the yo-yo” for the next twelve hours, or pass it up and play it safe. And it’s okay to choose the yo-yo sometimes! If that triple chocolate cake or apple pie is something you love and look forward to every year, and you’re prepared for your blood sugar to be a little wild, go for it! (Just don’t do it every day, but I think that goes without saying.)

For me, dessert is not worth the yo-yo- most of the time. I’m lucky, though, to have a mom who volunteers to bring a dessert for every holiday so that I’m not left out (trifle made with layers of brownie, cool whip, and bananas and strawberries. Blood sugar safe and delicious!). Thanks mom!

The moral of the story is, it’s okay to be okay with blood sugars that aren’t perfect sometimes, if it means you’re having fun and enjoying yourself. There’s no reason to stress yourself out over keeping your blood sugars in range on a holiday! Even if you’re trying to improve your A1C (like I am), one day isn’t going to undo your efforts. Enjoying your time with family and friends is much more valuable than stressing over your blood sugars.

And if you just so happen to end up with good blood sugars without trying? Then you, my friend, are a master, and I wish I had your skills.

 

Happy holidays!

Blame Game

Most people think of diabetes as a very physical disease, but there is a huge mental and emotional component to its management.

As I’ve said before, diabetes is one of those things where you can do everything right, and still not end up where you want to be. Super frustrating- like throw-your-pump-against-a-wall frustrating. Not that I’m suggesting that’s a good idea, because pumps are mega expensive, and you should never intentionally damage your pseudo-pancreas. But the sentiment is the same.

The other night, I went out for dinner with my roommate and her family for her birthday. It was fun, and we had some good food! I knew there was a possibility that my blood sugar could be affected during the night while I slept, but I did the best I could in calculating my insulin dose.

My CGM probably woke me up about 5 times during the night as I dipped below and rose about my “high alert” threshold, then started rising more dramatically. This resulted in several correction boluses and tests on my meter that kept me up for a fair part of the night. As I climbed out of bed feeling zombie-like and dehydrated, I found myself thinking,

“I shouldn’t have…”

Shouldn’t have celebrated my friend’s birthday the way anyone else would have? Shouldn’t have eaten the part of my dinner that I knew might give me trouble later? Shouldn’t have assumed that one correction bolus (with a little extra for good measure) would be enough to bring my blood sugar down to a level that wouldn’t make me feel sick in the morning?

The reality is, I had done everything I possibly could to both enjoy my friend’s birthday and keep my blood sugar under control. I regularly put 150% into my diabetes management, but often don’t see the results I’d like.

In a more extreme example, last fall, my blood sugars were very high (high 200s-low 300s) the vast majority of the time for a few weeks, despite massive correction boluses, basal and carb ratio changes. The fact that I was having trouble putting in pump sites where the insulin would absorb well was not helping. I felt sick and dehydrated and upset with my pump all the time, and one night during class, I developed blurry spots in my vision.

I was absolutely terrified. I could barely form coherent sentences when I called my mom. Had I damaged my vision by not taking proper care of myself?

Luckily, the endocrinologist on call at my doctor’s office assured me that it was likely a temporary fluid imbalance in my eyes, caused by my frequent high blood sugars. And sure enough, my vision returned to normal shortly afterwards. But I still blamed myself for this scary incident- even though I was doing my best to take care of myself in a difficult situation.

All anyone can expect from you in managing your diabetes is your best effort. After all, you didn’t ask for your body to attack your pancreas. Your best IS good enough. Don’t let anyone tell you it isn’t. Don’t feel bad if everything isn’t perfect all the time- what would you have to sacrifice to get the control you want? I think it’s better to live your life freely, have fun, and enjoy your experiences, instead of constantly worrying about keeping your blood sugar in range.

In case anyone was wondering, my eyes suffered no lasting damage from that incident, and I have a much better relationship with my pump at this point in time. I’m still working on not blaming myself when my blood sugars are out of range- but what goes up must come down, right?