Mad Scientist

Who am I as a diabetic? is something I am struggling to figure out. Not as in, who am I now that I totes around several thousand dollars worth of medical devices strapped to my skin? But more as in, what type of diabetic am I? What approach am I taking, do I want to take, do I think I will take, towards this new...characteristic...of mine?

The answer, at least so far, is a bit bizarre...a bit uncharacteristic, to be honest. When I was a kid, I was NEVER the type to go nuts for the science toys. Kids experiment kits? Mehhhhh. Make your own goo? I'd do it once or twice, but then lost interest. I wasn't deconstructing and reconstructing radios and computers. The power button was good enough for me...as long as it worked, I didn't really care how it worked. I had interests, of course, but I was not a process-based child.

Now that my body is my own experiment though? I. Am. Fascinated. I CANNOT get enough. I loooove reading through diaTribe, tudiabetes, #diyps and other blogs and how-to guides. Tips, tricks, suggestions, new technology and breakthroughs, I can't get enough. I got my first smartphone in 2014, and even that was begrudging. I was the 2nd person at my endocrinologist's office to get a prescription for Affreza. My iPad can often have up to 40 apps begging for my attention before I finally get around to tapping "Update All," and even then I have no clue what's happening nor do I really care. Yet I regularly update my DiaSend account every week, and spend at least an hour poring over the data and evaluating trends. When I went to my primary care provider, I had no idea when I last had immunization shots. Yet every time I go to the endo or educator, I go over my time limit yapping about my trends, analysis, and jerry-rigged fixes.

This window into my body's magical proceedings is just that interesting to me, and I have no clue why!!

Last night we listened to this podcast about a 19th century mad scientist and his obsessive experiments on a man with a fistulated stomach, and I couldn't help but feel an awkward tinge of recognition. This scientist, with his rare & unique opportunity to look directly into a human stomach, spent hours and hours, introducing basically every variety of food in the American diet at that time into the stomach and recording what happened to it in incredibly tiny time increments. I look at my 5-minute incremental measurements of my blood sugar and my eating logs and insulin pump data obsessively. And we are both so fascinated and obsessed! Which is why I guess, if this were a BuzzFeed quiz, I would have to say that my diabetes personality type is definitely "Mad Scientist." Granted, he was at the forefront of human biology discoveries and was literally looking at something that no one understood, whereas I'm simply re-treading ground that endocrinologists and other PWD understand all too well. But still. Can I help it that I'm fascinated with myself?

Come to think of it, after reading that last sentence...maybe my personality is more "Narcissist" than anything else...whoops!

P.S. What I'm reading now.

That unexpected sense of camraderie

I've mentioned on here that I am kind of a diabetes "lone wolf." If I haven't mentioned it, well, the very fact that I'm blogging to an audience of zero should probably speak for itself. I have gone to exactly one diabetes meetup, and while it was perfectly nice, and probably something I'll do again, that makes exactly 4 other T1D people I know in real life, and exactly 0 that I've met more than once. Add that to the 0 friends I've made online (touche, okay, I know that I haven't exactly been trying too hard...) and I don't get a lot of socializing with other non-pancreatically-inclined folks.

Which is why the little things make me smile. Like when you go to add a hypo treatment on MyFitness Pal and see that Glucolift tabs, Cherry flavor, have already been added to the database.

Just a fun little shiver of recognition, that can certainly help when you're feeling the hypoglycemic blues.  

#FBF

It started around this time last year.

I think the first thing I noticed was at my friend's bridal shower, the dress I'd bought just a few weeks earlier was already a bit looser on me. I'd been snacking more lately, too, finishing kid's lunches at work and clearing out the cabinet of our emergency snacks.

I went through phases like this, I assured myself. It was probably PMS. At least you're losing weight I thought smugly, when I bothered to think about it at all.

As I applied for new jobs, of course my mouth was dry. I was nervous, after all.

I'd always been a thirsty person. I often had to pee during the night. No big deal that now it was every night, sometimes twice a night.

There was more to come, of course. Now, it's become a fond joke in our household--the rattling of antacids in my purse that signaled my approach; my absolute trudging and utter exhaustion on simple 5 mile-hikes; the times I fell so deeply asleep on the train that I missed my stop; my secret fro-yo and Slurpee runs; the abandoned workout routine; the perpetually sunburned face; the days I spent in bed, binge-watching TV and playing Bejeweled.

I remember all these things clearly, of course, and more. I was slipping into diabetes for four long months, but I don't need to provide a WebMD litany of symptoms here.

What I remember most, though, was feeling completely and utterly empty. Resigned. Too exhausted to care about anything I'd ever cared about before. Everything was a burden and, what's worse, is that I assumed that it would just be that way forever. I guess this is what getting old is like. I guess I just don't like anything anymore. 

I read a kook doctor's book about diabetes, and he said that it's called diabetes mellitus because, while untreated, your body is literally melting into sugar. I'm not sure what I was melting into but it mostly looked like a desiccated, bony mess, curled up on the bed, sleeping 15 hours a day.

I don't have a pithy ending for this post...I feel a million ways at once when I think about how far I've come in the past 12 months. Grateful to be alive again, to be totally wrong about everything, relieved that aside from my pancreas, I am still me. Tired, when I think about all the time and stress and brain fog and body pricking I have endured and will endure. Sad, when I think about my students' last months with me and how lackluster I was. Ashamed, because there is no truly blase way to check your blood sugar in public. And of course, the ever-lingering sense of what-the-f*ckness...the utter confusion of going from completely, 100%, top-of-my-game healthy to someone who is covered by the Americans with Disabilities Act? There's definitely a lot to think about these days.

Radio Silence

I invest a lot of time and energy into my CGM. Don't get me wrong--I love it. I love the predictive power it gives me, the ability to plan activities, exercise, and snacks more effectively. I love the peace of mind that comes with it, the ability to aggressively correct and monitor the effects of said aggressive correction. I love avoiding brain-mushy, fridge-clearing lows in favor of a light snack of fresh fruit when I'm drifting down and have IOB. I love not having to wake at midnight and 3 am in order to test my basal rates, too, and being able to look at the data at a more comfortable hour.

There are many many benefits to this technology, and I know that it has been a huge tool in helping to me manage everything. I am still so shocked that only 10% of PWDs use it, although I know of course insurance companies can make it difficult. I hope this number increases, because I think it will help many people lead much healthier, happier lives.

That being said, it also puts a HUGE level of personal responsibility on me. I am already a very meticulous person (to say the least, according to former roommates ;) so being held accountable, every second of every day, for my blood sugar, watching those arrows, dreading the yellow and red numbers, can be really wearing. I remember when I first got my trusty Dexcom, the rep told me that, while most people interacted with their pump 7-10 times a day, people interacted with their CGMs over 20 times per day. I remember thinking that number was crazy!! I didn't want to become that attached to technology. I vowed to be reasonable, checking it only once per hour, or maybe more during exercise.

Well well well, how the turntables...20 times a day turned out to be a light estimate for me, for sure. I can't help it. With all that data, right there, avoiding the brain fog/super irritation of BG highs and obvious side effects of BG lows is just too tempting. I probably check it 10 times an hour, honestly. To be even more honest, I started to write 15 times an hour but got too embarrassed. I check it ALL. THE. TIME.

And while it is helpful, it can also just be a huge bummer. And I'm not talking about the nighttime "dancing" around high or low alerts that lead to beeps every couple minutes. And I'm not talking about the stress and irritation of having YAD (yet another device) strapped onto me and gazillion dollar medical device to carry around. It's more like, sometimes, my BG is just high. It could be a bolus that doesn't hit right. It could be the first bolus after a site change (can I get a what what from my OmniPod peeps?). It could be stress. Or it could be a chocolate binge, cereal dessert, cheese and crackers mishap. Either way, I'm high, and there's not too much I can do about it except bolus, hydrate, and wait for my liver to help me clear my system.

With my sensor, though, this can be positively infuriating. There's something about that stubborn straight-ahead arrow when I am trying my darndest to get low that really peeves me. I hate looking back and seeing a huge yellow mountain for the past 3 hours.

When I'm sensor-less, though, I cut myself way more slack. I know I'm high, still, but the time until I'm back in range seems to pass more quickly. I focus on it less. I swear I even feel less symptoms (probably because I'm not thinking about it as much). I know it's not healthy, and that without my Dexcom I would spend much more time out of range. I also appreciate that the sensor helps me avoid crashing lows due to "rage bolusing." But still...I just, forgive myself, a bit more I guess.

Maybe with less access to information, I have more access to patience, somehow.

I'm not sure how to build this into my routine effectively, but I do know that I need to value that technology breaks are good for my soul. However, I'm reluctant to waste a perfectly good sensor by ripping it off just because I want to indulge in an all-day gourmet chocolate festival or simply need a mental break.

Sometimes though, I am reminded that you need to let go. 

A Haiku

Last month I saw a few of these on other blogs and felt inspired myself...

Do I still like fruit?
She wonders distractedly.
Post-prandial spike. 

Veggie platter-pus

Breaking news. Veggie trays at parties. Have they always been there people? That poor neglected crudite plate is a real diabetic office party free carb free for all smorgasbord game changer. That plus guacamole have helped me through more than a few awkward skinny girl with diabetes but why are YOU counting carbs disdainful convos.

Any other party tips party people?

*crickets crickets-*

Perhaps you're all out partying...

$1,000,000,000 later....

The influence of bloggers is scary sometimes...

Not myself personally (obviously), but others. Two things happened recently to make me reflect on the power and impact that the internet gives certain people in your life.

One of my diabetes guru bloggers, the one who introduced me to the DOC basically, was talking about getting burnt out on blogging, and being unsure if she wanted to continue. When I read that, I honestly felt like a life raft was being grabbed away...a bizarre feeling considering I have never even met this woman...don't live in the same state as her...and (creepily) have never even interacted with her, even online! Yet somehow, knowing she's out there, living her life, following along, it's comforting for me. I don't even have any real diabetes friends in real life, but she has served as my entryway into this new phase of my own life. And I don't want her gone. I don't want to hear about her burnout, because I am afraid for my own burnout.

The second, more unfortunate influence is on my bank account. For all you non-diabetes people out there, a super-fun side effect of DKA is that, when you finally do start to recover, your poor, stressed-out, starved body celebrates its revival by letting out a big sigh of relief....and with that sigh...it also lets go of most of your hair. Seriously. We're talking falling out in clumps, hair braided into your bedsheets, decorating the back of your shirts, tangled in your brush, you name it, there was hair there. And it's not only hair...it's eyelashes, it's eyebrows, it's mustache hairs (okay yeah I was kind of thankful for that one). It's something I can get into another time, but having this happen was a VERY vulnerable experience for me. I'm not sure if it was some displaced issues about the words "incurable disease," but the hair loss made me sadder, madder, and more scared than anything else happening to me. So I started some GNC hair vitamins, I cut my hair short, I read up on the internet, and I hoped and hoped it would grow back.

Weeeeeelllll it's not quite there yet, but it has certainly stopped falling out at least. And in the meantime, I've upped my quest for hair-thickening, volumizing products...which led me to a few beauty blogs....which led me to a few more beauty blogs...which led me to a massive Sephora.com order (they just offer so many free samples!) (it's so hard to tell how small 2 oz is when you're buying online!)....which was probably a bad decision.

But when your hair is see-through in your shadow, and your eyelashes are missing....well, what can I say? Your judgement gets a bit cloudy. And that, ladies and gentlemen, is why I feel I can claim this as a medical deduction on my taxes.