Real talk: diabetes is kind of a big deal and this article hit close to home

This morning the Diabetes Training Camp Facebook page posted an article titled “Stop diabetes ‘blame’” that really, really hit close to home for me. It was not an easy read–the first article linked to in this one was about a 22-year-old who died from diabetes issues, and the second was a link to a study that showed that t1d women tend to die earlier than t1d men–but it was such a good read. It felt very personal, too. This was something I thought about sharing on Facebook, but I stopped because it talked about so much stuff that’s so personal to me.

I’m not afraid to talk about my diabetes. I mean, obviously–I’ve got this blog, and I’ve got a tattoo on my left wrist that says “diabetic type 1.” There are a number of diabetics who like to keep it quiet, but I have never been able to do that. (Not that there’s anything wrong with that approach, just that I’m incapable of it.) But I still have boundaries there. There’s stuff that I talk about, like I’m not afraid to ask for juice if I’m having a low blood sugar or excusing myself to go take insulin after a meal, but there’s a deeper layer that I don’t really talk about to a lot of people.

This article hit that layer like a sledgehammer.

There’s a lot of scary things about diabetes. I’ve had nights (especially after particularly rough derby practices) where I’ve had to set alarms to get me up every couple of hours to make sure I was okay, even though I have a CGM, because my blood sugars can drop or rise too quickly for the CGM to catch it. I leave a trail of insulin pen needle wrappers and used test strips where ever I go, even though I swear I pick them all up. I have a pretty severe anxiety problem surrounding my blood sugars, because I’m terrified of my blood sugar going low and me not being able to treat it or catch it on time before I pass out (and potentially die). It’s a life-threatening disease, and even thought it seems like insulin fixes it, insulin is only a treatment, not a cure, and it’s not even predictable–it’s a total guessing game as to what my body is doing this week, and the rules to said game change unannounced and at random.

It’s also a lonely disease. I think that’s harder for me than the scary part. I tend to get two responses when people find out I’m diabetic: “You take shots all the time? I could never do that” or “Oh, I totally understand. Sometimes I have asthma when I run.” Neither of those is even a little bit comforting. To the first response, I say “Beats dying.” Yeah, kinda bitchy, but I really don’t appreciate being reminded that what I do is not “normal” and that it’s this whole extra thing I have to deal with*. To the second response: yeah, asthma is an issue, and it can get serious, I will give you that. And I don’t want to play Misery Olympics here. But I don’t understand what it’s like to have asthma, and you don’t understand what it’s like to have diabetes. It’s not a fair comparison to make.

And it’s so lonely because most people don’t get what it’s like to have a life-threatening disease. I’m hyper-aware of my own mortality because my life is completely dependent on this medication. If I don’t have access to that, it’s not going to take long before my body poisons itself (it’s called diabetic ketoacidosis). It’s terrifying to think about how fragile I am in that respect. On the other hand, if I take too much insulin, then I’m still in trouble, because it’s possible to die from hypoglycemic shock. Someone on the internet once pointed out how powerful insulin is because it can both keep you alive or it can kill you (if not used correctly). Not to mention it’s incredibly expensive and very hard to get access to outside of Western countries, but that’s a whole other can of worms.

Diabetes can’t be both a very serious condition that produces a variety of outcomes even when a patient with the condition is “compliant” AND a disease that is totally dependent upon a reckless drug (insulin) where success is completely and totally the responsibility of the person with type 1 diabetes. The message here – If you do not succeed, you did it to yourself. Don’t screw up.  

I don’t think there’s that much more I want to say on this, because there are a million more things I have to say on this topic, but go read that article. It explains the issue about a million times better than I ever could.

I just have a lot of feelings

*Seriously I really fucking hate hearing “Oh I could never take shots/check my blood sugar/do what you do!” Way to remind me that I’m not normal. Please stop saying it. 

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In case you’re wondering what having a CGM (continuous glucose monitor) is like…

The coolest high-tech medical device that I use is definitely my continuous glucose monitor (CGM). It monitors my blood sugar by testing every five minutes to see where I am, which has been incredibly useful for planning and finding trends in my blood sugars. For example: my blood sugar tends to drop a little bit around two in the morning, so to prevent overnight lows I’ve started going to bed a bit higher than I normally would.

It’s also been useful for catching highs and lows before they get severe. This is the main reason why I got it, actually–I’ve had diabetes for almost nineteen years now and I’ve lost a lot of my ability to feel my blood sugar fluctuations, so it requires me to be really low or really high before I can feel the effects. Not only is this dangerous because it can render me unable to treat it without help, but it also has long-term implications for my health.

The CGM can sense when my blood sugar is rising or dropping, and it alerts me when it gets above or below a certain level. It’s particularly useful at night when I’m even more susceptible to severe lows because my blood sugar has to be dangerously low before I wake up. But the CGM wakes me up (I’m a light sleeper and man, is that buzzing LOUD!) way before it gets to that point. It gives me a sense of security.

Unfortunately, it’s not perfect. The FDA has not approved it to fully replace the traditional manual blood sugar testing (you know, the one that involves a finger prick and a little machine) because it’s not 100% accurate so I’m not completely rid of the traditional blood sugar testing. I always test before treating a high or low, and at a minimum I have to test every twelve hours so that I can recalibrate the CGM. That being said, it’s still greatly reduced the number of times I check my blood sugar during the day from 10-12 down to 2-3.

The other way in which it isn’t perfect relates directly to roller derby (and other forms of exercise). There is a bit of a lag with the CGM when my blood sugars are rising or falling rapidly. The CGM could read that my blood sugar is 140 when actually it’s 90 and dropping, or it could read 140 when it’s actually 200 and rising.

This doesn’t happen often (my blood sugars don’t generally rise or fall that rapidly), so it’s not like this is happening daily, but it makes it tricky when I’m exercising. During bouts, for example, I manually test my blood sugar every time I’m on the bench just to be on the safe side since the extra rush of adrenaline I get from the excitement of bouting can have unpredictable effects on my blood sugar. So again, I’m not completely free of the manual finger-sticking mildly bloody form of blood sugar testing.

But overall, the positives far outnumber the negatives for the CGM.

A note on the way it works, for those of you who are unfamiliar with current diabetes technology: the CGM comes in three parts (the sensor, the transmitter, and the receiver). The sensor is the little bit that actually tests my blood sugar. It’s a little sensor that sits on my stomach with a piece that goes under my skin and looks a little bit like a reversed antenna. I have to change it every week or so, but since the sensor kits come with applicators, it’s pretty easy to do. After the first couple of weeks, I felt pretty comfortable with it and now it takes me about two minutes to change the whole set. Even though there’s a piece an inch or two long that sits under my skin, I can’t really feel it so it doesn’t hurt. And it holds up to a tough roller derby practice in the July heat, so they’re pretty durable.

The second part, the transmitter, is a little grey piece that snaps onto the sensor site and transmits the reading to the third part, the receiver. It sticks out a little bit, so if I’m wearing something tight across my stomach you can see a little thing that sticks out, but it’s not obtrusive enough for me to feel awkward or uncomfortable about it.

And the receiver is the part that I actually interact with. It’s a little device that looks a bit like an older cell phone (anyone remember the LG Chocolate phones in the late 2000s? It looks like one of those) and shows me my blood sugar reading on a graph over time. I can zoom in close enough to see the graph trend for the past hour, or far enough to show me where I’ve been over the past 12 hours. I prefer to keep it at the level where I can see where I’ve been for the past two hours because otherwise it looks too dense or doesn’t give me enough historical data.

On the receiver, I can also enter my blood sugar when recalibrating, I can change the levels at which it alerts me that my blood sugar is high or low, and I can shut it off if I need to. There’s also functionality for me to enter my meals, exercise, and insulin, but I don’t use that so I can’t speak for how that works.

It’s a really cool device, especially considering that when I was diagnosed in the mid-1990s the blood sugar monitoring technology consisted of a huge boxy meter that required a pretty big blood sample (big enough that it was difficult for a five-year-old’s tiny fingers) and took 45 seconds to count down to give me a reading!

New Research Suggests that One in Three Type 1 Diabetics Still Product Insulin For Years After Diagnosis

I found this really cool new study that suggests that about a third of type 1 diabetics still produce insulin for years after the initial diagnosis. For those of you who are unaware, in type 1 diabetes the body doesn’t produce insulin (a vital part of the digestive system, without which you die) because the immune system destroys the insulin-producing cells in the pancreas. (The joke is “autoimmune disease: because the only thing tough enough to kick my ass is me.”)

This research is amazing because it’s such a game changer. It doesn’t affect all type 1 diabetics, as the title says, but it could change the way diabetes gets treated in some people. It’s not uncommon for peoples’ bodies to keep producing insulin even after diagnosis, which is known as the “honeymoon period” because it requires less work since the body is still somewhat able to regulate itself, but this proves that there’s definitely a subset of diabetics who still produce insulin for years after diagnosis–this study cites one individual who was producing insulin for 40 years after diagnosis!

It’s also a total game-changer because it could affect the type of policy coverage certain people receive. A really popular way of treating diabetes is the insulin pump, which acts as a sort of electronic pancreas that is manually controlled by the user and is attached to them at all times, kind of like a mini-IV. Insulin pump coverage by many health care plans depends on clinical proof of having an autoimmune disorder and having proof that the patient’s body is no longer producing insulin. In the case of the 30% of diabetics who are still producing insulin, this means that they can be denied coverage for this treatment.

The information used in this study to gather this information was taken by the T1DExchange, which collects information from type 1 diabetics. I’ve taken part in that–there’s a database somewhere that has some of my medical history pertaining to my diabetes. I’m glad to know that that information is helping with studies like this one!

Here’s the source for the article on this. Here’s the study, if you feel like wading through academic research. I love reading stuff like this, even though I don’t have the academic background to fully understand it. (If I didn’t have diabetes, I probably wouldn’t understand any of it–I haven’t taken a biology class since high school!) I’d love to do more work with diabetics, but I really don’t want to go to medical school, so for now I have to be content with reading articles on new research.

Obligatory “My Year in Review” Post

Happy New Year’s Eve! I don’t know about the rest of you, but I’m excited to head down to Boston later on this evening to ring in the new year with some friends. And, as ‘tis the season to reflect on the past year, here are some highlights:

Derby things:

  • Learned to skate and passed minimal skills assessments with a lap time of 4:51 on my 27 laps
  • Learned skate maintenence (how to take skates apart, clean them, and put them back together)
    Had a great first season with my league
  • Got the “Diabetes Cleatus” award at the end of season party (which deserves a “lol”)
  • Learned to drop into a half pipe at the skatepark
  • Guest skated with another league (and had a great time)
  • Started this blog and have actually stuck with it so far
  • Upgraded my skates from Riedell R3s to Antik MG2s (I love my new Antiks, too!)
  • Went to the Northeast Derby Convention in May

Diabetes things:

  • Got a CGM (continuous glucose monitor)
  • Got a medic alert tattoo–”diabetic type 1” permanently resides on the inside of my left wrist now
  • My A1/C (90-day average) was 7.0 earlier this year, which is the lowest I have on record
  • Started to get the hang of avoiding awful blood sugar spikes after meals (especially after breakfast)
  • Started this blog and have actually stuck with it so far (hey, it’s a diabetes success too)
  • Finally found a food/insulin/exercise routine that allows me to make it through derby practice, after two months of struggling
  • Started to accept that setbacks happen and I can’t expect to be perfect on the first try (or the second, or the third…maybe by the 50th I’ll get it)

Other things:

  • Traveled a couple of times for work
  • Spent a day and a half in London (!!)
  • Bought a new car when my old one finally kicked the bucket
  • Found a really great group of friends
  • Got a pretty big promotion at work (ha, take that, imposter syndrome!)
  • Attempted level 4 of the HSK (汉语水平考试, Hanyu Shuiping Kaoshi)–didn’t pass, but I just barely didn’t pass, so it still counts as a success in my book)
  • Got comfortable experimenting with  brightly-colored make-up–I’ll get around to posting some of my bout-day looks eventually; I LOVE wearing brightly colored eye-makeup (any excuse to do so)

I don’t do New Years Resolutions (why bother waiting until the new year?  Just start new habits today), so I don’t have any of those to add, but: here’s to rocking it even harder in 2015.

The Season of Forgiveness (For Your Holiday Blood Glucose Levels)

Tis the season to eat chocolate
Fa la la la la, la la la la
Don’t forget to take a shot for it
Fa la la la la, la la la la
Don we now our CGM sites
La la la, la la la, la, la la
Forgive yourself for naughty blood sugars
Fa la la la la, la la la la

(Or. Well. Something like that.) My first rule of thumb for holiday eating: obviously remember to count your carbs and take your insulin, but don’t be too hard on yourself if you forget something or miscalculate or something. (My second rule of thumb is to be careful with your holiday drinking! Alcohol affects different peoples’ blood sugars differently, so make sure you know how it’s going to affect you before you partake in that eggnog.)

For those of you out there who celebrate it, Merry Christmas! I’ll see you guys later in my post-holiday fuzz.

Well This is (Still) Discouraging

I wasn’t exaggerating when I tweeted this earlier. It’s always tough to make it to the gym (or to make it anywhere, really) during the holiday season–even though it’s not directly a holiday week, it’s still difficult to get anything done between work, shopping, traffic, and the weather.

My own laziness isn’t exactly helping, either. It’s kind of a miracle that I picked up a sport in the first place, never mind a sport that’s as physically demanding as roller derby. At least in the regular season all my exercise involves skating. It doesn’t feel nearly as awful to do all that exercise when I’m on skates, and a lot of my teammates will agree with me there. But when it gets too cold, snowy, icy, and dark to skate outside, and when there’s no real indoor space, you have to get creative. (And by “get creative” I mean “suck it up and go to the gym.”)

So yeah. I’m not always a fan of the gym. I get self-conscious, like anyone else. I get especially self-conscious when I have to stop halfway through a workout because my blood sugars have suddenly destabilized, making it unsafe for me to exercise. It’s embarrassing because I think it makes me look like I’m giving up because I’m lazy, not because I’m physically unable to complete the workout. I had a lot of trouble playing sports growing up because more often than not I couldn’t make it through a practice because of my blood sugars, which were way less controlled than they are now. And the trouble got compounded by the way my teammates and coaches acted like I was just giving up or not trying hard enough. So while I’m definitely working to get over it, it’s still a deep-rooted belief that people see me and think that I’m just being lazy.

That being said, I really want to like the gym! I like lifting weights (and I want to start lifting more). The treadmill, while not as fun as actually running outside, is a pretty nifty piece of equipment and one of my goals for the off-season is to complete a couch-to-5k program so I’m utilizing that. The group exercise classes offered at my gym sound really fun, too. I’ve taken a couple, but I (unfortunately) haven’t had the chance to try out the tai chi classes I’ve been dying to check out.

But it’s discouraging as junk when my body won’t cooperate with what I want. It’s especially discouraging when I specifically took the time to really measure my food and take the correct insulin doses at the correct times and my blood sugar is still high as a freaking kite when I’m supposed to be leaving for the gym.

Coincidentally, Treble Maker 909 posted this today about what you can do while on injury to keep up with your derby skills. Guess I’ll just go find some footage to watch and keep calm until my insulin kicks in…

Have a Thanksgiving* Eve Post

Just a reminder on this Thanksgiving* eve that if you’ve got plans to celebrate Thanksgiving tomorrow, relax, take your insulin, but don’t beat yourself up if your blood sugars are off–if you’re hanging out in the 200-300 after a holiday meal, give yourself room for error. I never expect perfection during holiday meals because it’s so hard to measure everything and count accurately. So long as I’m below 400 and so long as I come down within a couple of hours after the last part of the meal I’m happy.

If you don’t celebrate Thanksgiving*, have a happy Thursday!

*Disclaimer: I don’t like Thanksgiving all that much for a lot of reasons, mostly surrounding its hypocritical roots and the way people tend to talk about food during the meal

7 Quick Tips About Starting New Exercise (With or Without Diabetes)

Starting a new exercise regime, whether you’re a total couch potato or already working out five days a week, is a bitch and a half. Sure, I can skate my 27/5 with pretty decent timing, but can I run that same distance? No way. Yes, being able to skate means that I’m not starting from nothing if I decide to pick up running, but it uses a completely different set of muscles, it needs a completely different mindset, and it affects my blood sugars (and yours, too!) in a completely different way. So here are 7 quick tips I’ve found help me a lot when I’m picking up a new form of cross-training.

  1. Look for intro-to-your-new-sport regimes. If you want to pick up running, for example, the couch-to-5k program is wicked popular. There’s tons of apps out there that guide you so that you know when to walk and when to run. You start at intervals of mostly walking with short bursts of jogging (30 or so seconds at a time) then build up so that you’re just straight running for 20-30 minutes (about a 5k). It’s tough trying to figure out how to get from point A to point B on your own when you don’t have any sort of background in exercise.
  2. Don’t be afraid to try different things. Just because your teammate gets great results from yoga classes three times a week doesn’t mean that you have to do that, but if you’ve never done yoga before, ask if you can tag along! You don’t know if you like or not it until you try. And you might be surprised–I didn’t like tai chi when I did a demo class in high school, but now I think it’s wicked cool and it’s on my list of things I want to do more of.
  3. Find a buddy or a community. I know, I know, EVERYONE says this, but it really does help! A friend can force you to be accountable for it, and it’s much harder to say “nah, I don’t feel like going to the gym today” if your friend is texting you “hurry up, I’m already in your driveway.” In some cases, it also gives you a partner to play with (for things like tennis) or someone to spot you (for things like powerlifting). For diabetics, it’s also good to have a friend who can help you in case your blood sugar goes low, if nothing else so that you have someone to sit with while you eat your candy.
  4. Pick something you’re interested in instead of something that’s “good” for you. You’re not going to have much motivation to go to your workout if you’ve decided to pick up running when you’d rather be playing basketball.
  5. Use achievable goals. Don’t expect to be an expert overnight, and especially don’t expect that you’ll have a pre-workout routine nailed down in a week. As much as I would love to be able to go straight from a season of roller derby to running a 5k…it’s not going to happen. It is going to be tough at first.
  6. Related: don’t beat yourself up if your blood sugars can’t keep up with it at first. I repeat: it is going to be tough at first. It took me about two months to get a routine nailed down when I went from the off-season 1x/week practice regime to 3x/week last spring. The hardest part was having to sit and watch my teammates skate and knowing that I was missing out on valuable training because my blood sugar was 300 and I couldn’t skate (on top of the nausea, fatigue, and extreme thirst high blood sugars bring on anyway). Yes, it’s very important to push yourself to be better, but you need to give yourself time to get the right balance of pre-workout carbs:insulin before you can push beyond that beginner level.
  7. And, obviously, have fun, be proud of yourself, and don’t compare yourself to others. Become one of those sick people who enjoys getting their ass kicked at the gym/playing rugby/running a half marathon/whatever. I find that the harder I have to work at something, the more rewarding it is when I accomplish it. I don’t think I’ve ever been prouder of myself than I was when I made my 27/5 lap time (after about six months of skating). Sure, there were skaters who could pretty much make their laps as soon as they put on a pair of skates. My accomplishment doesn’t really mean much if I’m looking to compare myself to others’ records and is actually pretty discouraging because it took me six months to get somewhere that other skaters got one. But it means a junk-ton to me that I cut off 21 seconds between my second attempt and my third.


What are your tips? What did you have to do when you picked up a new form of exercise?

End-Of-Season Awards Night, or: What Do You Mean, “Diabetes Cleatus”?!

We had our end-of-season awards night this week, and what a great way to wrap up the season. Our season actually ended at the beginning of September, so while a good number of people have been going skating (outside or at the skate park, mostly) there are a number of skaters who I hadn’t seen in a couple of months, in addition to a few who won’t be coming back in 2015. We also get awards–the league president comes up with awards for every skater (things like “Ejection Queen” for the skater with the most ejections in a game, “That’s Not How You Use Your Head” for the skater who had a habit of falling and hitting her head a lot (!), and “Best Wardrobe Malfunction” for…well, you know).

My award? “Diabetes Cleatus.”

(I had to look it up, but apparently ‘cleatus’ refers to hillbillies. Thanks guys.)

I knew it was coming–it’s been a pretty big thing for me and I haven’t exactly made a secret of it–but it still made me laugh when I was presented with the award. It also inspired this Facebook post:

"Seacoast Roller Derby is one of the best things that's ever happened to me and last night's end-of-season party solidified that (as if I wasn't convinced before). I never thought I could do something like play roller derby (and actually wasn't even convinced I could do that until about six months after I started) but you all have been incredibly wonderful and supportive. This is sappy sorry not sorry it needed to be said. Here's to rocking it even harder in 2015."

I know, gross, how sappy. But I mean it when I say “here’s to rocking it even harder in 2015.” I’ve got a general goal (be good enough to earn a spot on my league’s A team) and I’m working on breaking that out into smaller goals to work on during the off-season (more to come on that later, I’m sure). And, of course, I have the goal of “kick my diabetes in the ass.” Rock on, Dany Stormborn.

I guess I should start with an explanation, right?

My name’s Danielle, I’ve had type 1 diabetes since I was five years old, and I just hit my one-year anniversary of playing roller derby.

First of all, the fact that I’ve stuck around this long and succeeded in derby is a miracle in and of itself. It’s not easy to balance diabetes and exercise, and it took a lot of wicked supportive teammates to help me get this far.

I skate with Seacoast Roller Derby located in New Hampshire, USA. I’m primarily a blocker, but I enjoy jamming too. (The tough part of jamming is the toll it takes on my blood sugars, but I’ll get into that on another day.) If you want to see me talk about derby, here’s a video interview I did a little while back.

So why am I blogging? Recently I was sitting around thinking about cross-training. I’ve hit a point where practice alone isn’t enough to get me to the level I want to be at, which means that I need to start looking at other options for exercise. The problem with picking up another sport (other than the fact that I’m lazy :)) is that any new sport or form of exercise comes with a period of “how the heck do I figure out a new routine for this.” It took at least a couple of months with derby before I really figured out what I need to eat, how much I need to eat, how much insulin I need to take, and how often I need to test my blood sugar when I skate. And that’s just for practice–I’m actually still trying to figure out what I need to do for bouts!

In my “think, think, what should I do for cross-training” talk, I found myself saying “I wish I could just get a personal trainer who works with type 1 diabetics! Then I’d have the support I need and the knowledge to help me figure out a good routine.” And while I’m sure there are personal trainers out there who do work with type 1 diabetics, there probably aren’t that many of them, and bam! Idea for a blog was born.

I’m no personal trainer. I studied linguistics in college and now work in an office, which is about as far from personal training as you can get. So I can’t provide professional advice, if that’s what you’re looking for. But I at least want to start a log of what I do, what works, what doesn’t, and how I feel about it. Maybe if I start talking, someone will listen. And maybe if someone listens, I can get some good advice in return.