Afrezza User

After reading initial excited reports here on the interweb, I spent the last few weeks dutifully jumping through the required hoops and I finally got my hands on some of that sweet sweet Afrezza magic dust. On a tangent here, while it's true that the daily pricks and pokes of diabetes are tough, turns out a spirometry exam is TOUGH AS SH*T. Like, disappointed looks from the technician as she explains for the 14th time that I'm "microswallowing. Like doing these really tiny little swallows...anyway the machine can't read it?" So I, nose running, eyes watering, still unclear on what microswallowing actually feels like and how to stop it, rubber hose and scuba mask mouthpiece shoved into my mouth prepare to exhale...exhale...shoot it out...and HOLD HOLD HOLD for flipping ever...again...

Anyway. That semi-scarring incident behind me, I earned myself the golden ticket. The magic juice. The incredible, inhalable....AFREZZA. And I have to say, so far, the hype is not completely wrong. Even though there are fairly few PWDs on it so far, I think it is going to be pretty popular by the end of the year. If people can stick it through the spirometry, I guess. Here are my thoughts so far:

CONS:

• Suuuuuper awkward in public. I've gotten used to quietly beep beep booping away in the corner with everyone else oblivious to what's happening. Of course I'm pretty nonchalant about doing finger sticks, but people are generally cool with that because it's familiar. We've all seen the obesity documentaries. We know what diabetes is. But shoving powders into a plastic whistle and doing your best Snoop Dogg impression? Attention grabbing, to say the least.
• Dosing is confusing, to say the least. It's just in and out so fast...it's hard to know how much is actually going "in." And it doesn't seem to hang around very long, so it can lead to some roller-coastering around mealtime. Some people have recommended doing a pump bolus and an Afrezza bolus...I'm still investigating. 
• Still have to wear a pump--for basals, for food bolusing (because I'm still figuring out the dosing, I mainly use the Afrezz' for corrections). So that means I'm a whistle-blowing, ever-beeping cyborg now. 
• It doesn't keep for very long (although I haven't tested this) but once you open a foil pouch (which contains roughly 10 blister packs of 3 cartridges each), it's only good for 10 days. And it takes up more space in your refrigerator, too. 
• It's hard to keep track of--I rely on Diasend to help me manage things, but since I'm taking less pump boluses and there's no way to automatically upload my Afrezza use (and no app that lets me upload all my data plus add in manual timestamped notes in once place), it's messing with my organization. And since I'm also Type A, in addition to Type 1, I don't love that. 

PROS:

• It works. It works. It works, it works, it works. I CANNOT say that one enough. It just does. Wicked post-prandial spikes after breakfast? Accidental snacking binge at the staff meeting? random CGM delay that shows you at 113 --> one minute and 181 double arrows up 5 minutes later? SHAWTY DON'T PLAY. One 4U puff and things are smoothing out. No rage-bolusing. No vigorous, frustrated walks or bike rides that BF is forced to endure. No 5 hour snooze alarm on my Dexcom going off to remind me that I've been out of range for way too long. We're talking results within the half hour. 
• It works, just the right amount. As in, this weird flattening out effect where I never seem to drop below 65 with it, as long as there's little to no other insulin in my system. And then I usually drift gently back up into the 80s or 90s. It's confusing, sure, and I sometimes treat for hypos that never happen...but still...

Overall, I'm pretty pleased. On the one hand, I have to admit I appreciate that thinking about the wicked BG consequences often holds me back from over-indulging on the treats. And having Afrezza around certainly mitigates these consequences, which makes me a little worried that I might fall into some bad habits since big bad A is there to come save the day. On the other hand, "pancreo-typical" folks don't have to suffer hours and hours of guilt, misery, and potentially life-threatening hypoglycemia (due to fervent rage-bolusing) after polishing off a bag of chips. So maybe I shouldn't either...especially when often the numbers have nothing to do with my own personal habits/choices and instead have everything to do with my pancreas not functioning. 

And essentially, isn't the modern lingo in diabetes today talking about "improved time in-range?" Well, Afrezza has certainly given that. Never fear, my trusty Dexcom still buzzes quite frequently. I don't have those flat, beautiful graphs that some other new converts have been showing off all over the internet. But while things may be a bit bouncing around a bit more, there's also a lot of time in the white to show for it. 

I just picked up my "real" first supply today...one month's worth. So far it's only been a week and goodness knows after only a week of subcutaneous insulin I was a hot mess. I'll check back in about my progress soon!

This time last year...

Has become a common refrain in our household. "Remember when?" has popped up a lot as well, because as the weeks start ticking down towards my first dia-versary (spelling?), this time last year I was, well, sick.

It's fun, but also upsetting sometimes. We went down to visit the BF's parents, and we remembered a hike in the canyons that I could barely make it back up out of. I remember drinking all of my water within the first half hour; he had to ration the rest from me so we had some for the return. I remember the pure frustration of feeling so exhausted even from going downhill. I remember the peculiar sensation that my legs weren't holding me up--my legs felt as jelly-ish as if I'd just run a marathon (well actually for me as a non-runner more like as if I'd just run a 5K...) and my ankles jolted with each step. I remember tripping over each stray rock, my feet not lifting as high as I thought they would. I remember pure disbelief when our phones told us the hike had only been 4 miles. I remember napping in the car on the way home.

When we drove to get food, we remembered how I'd drunk the entire extra-large jamaica meant to be shared among his family. And how I'd gotten seconds (no one had ever thought to ask for a refill before!) and drunk most of that, too.

I remembered stumbling around their house each night, 2 or 3 times, restless and needing to pee.

It was after this trip that I went to the doctor for the first time, suspicious that something was wrong. Unfortunately, I have had ovarian cysts before, and so I blamed my symptoms on that (turns out ovarian cyst symptoms pretty much run the gamut and can explain away almost anything) after they found one on my ultrasound. That poor, benign cyst got the blame for everything, right up until they started pumping insulin through me in the emergency room.

But mostly what gets me about the "remember this" game is how much I don't remember, or how clouded my memories are. The spring of last year passed in a cloudy haze for me, and most of my memories are tied into exhaustion or centered around what sugary treat I was desperate for.

Sometimes when I want to refer to that time, I'll say, "Remember when I had diabetes and..." First of all, because "Remember when I had undiagnosed diabetes" is longer and therefore less fun to say. And second of all, because if I think of diabetes as a disease, and of a disease as feeling sick, then I have never felt so sick as those days. 

One of my least-favorite acronyms

UTIs.

Not the most fun topic for this here blog, but sadly a very real reality in my day-to-day diabetes life. Is anyone else (females only I guess) dogged by these? I swear I take probiotics and a cranberry supplement, as well as drink more water than a drowning fish, but still every time I have a pump fail or a couple of sticky 200s in a row, there I am again drowning in nitrofurantoin...honestly probably my #2 most-relied on drug after the Humalog.

It's not a huge deal, but it's certainly not ideal so I thought I would note it here...hopefully it's just part of the diabetes hazing and it'll be over once I'm out of the early days. 

These are a few of my favorite things

When the hypoglycemia strikes, when the boluses sting
When I'm feeling sad....
I simply grab one of my favorite things
And then I don't feeeeel sooooo baaaaaaaad!

In no particular order, here are some things that keep my life with diabetes in order.

*Opsite Flexifix tape: Learned about it (like so much else) from good old sixuntilme.com...two words my friends: GAME. CHANGER. Especially for the OmniPod...no more catching my pod on a doorway or clipping it when I'm pulling on a shirt...just a strong base layer of this all over and I'm good to go. It's also amazing for extending the life of my CGM sensors and keeping sweat and water out (which I'm all about since omfg they hurt to put on). I seriously cannot emphasize this enough, and it's the main reason I'm writing this post for future me...if for some reason I get amnesia now at least I'll never forget this stuff. Oh and did I mention that, unlike the rest of diabetes, it's actually a pretty good bargain? $8 for a ginormous roll that's lasted me 4 months and counting...

*Luna Protein bars: Not the regular ones, but the PROTEIN ones. They are the perfect snack for when I'm lightly drifting down with some IOB, or when I want to go for a nice long walk. Under 200 calories, relatively delicious flavors, enough sugar (12 g) to pump me up and protein to keep things easy breezy and lack of post-prandial spikey. When things are a bit more serious (i.e. low blood sugar or going on a hike) I'm all about Larabar Apple or Cherry pie flavor. Also under 200 calories, they are basically smooshed together dried fruits and nuts. Quick energy + fats to keep it going. Also extremely delicious...I used to rely on the carrot cake flavor but it's just so good that I kept eating it when it was non-essential...

*Nightly yoga fix: www.yogaglo.com. Full disclosure--I accidentally originally typed togaglo.com which is another type of fix altogether I suspect. In my head, I'm picturing disco-themed togas or toga-themed discos. Neither of which I'm actually trying to talk about!! A personal strategy for keeping my A1C down is to try and get my nights pretty stable...if I can keep things cool after dinner and up until breakfast, that's a sweet sweet 10 hours or so that my BG is in range and I'm doing absolutely zero to maintain it...which is almost half the day in range with little to no worries :) To accomplish this, I try to stick to a relatively low-carb, low-fat dinner, not eating after 8 pm, and a gentle or more vigorous flow to help me relax, unwind, and maintain my sugars. Plus also did I mention relax and unwind? Turns out working, going to grad school, and managing a new diabetes diagnosis is a lot. So bring on the chaturangas and lion's breath, I say.

*This tip for managing my breakfast bolus. I eat essentially the same breakfast every weekday, and I test my fasting basal morning rates every weekend when I routinely sleep through my weekday breakfast time. Meaning that, breakfast is a great time for me to experiment. I was feeling really frustrated by my morning blood sugar spikes that would occur despite my steady fasting BG and relatively intense IC ratio. There was no reason that nonfat plain yogurt and 2/3 cup of protein and fiber heavy old people cereal should send me skyrocketing into the 300s without constant maintenance. And oh! the rage bolusing...and the subsequent roller coastering...not so fun. Until I read this. Which makes oh so much sense...overnight fasting=not a ton of insulin floating around in the body=no insulin hitting the body until 45 mins or so AFTER eating (since I was doing a 20 min pre-bolus)=my poor little basal insulin trying to do all the work=basal insulin FAILING to do all the work=crazy high blood sugars that won't crack thanks to my sensible ingestion of protein. So now, I set an early alarm, bolus, sleep, get ready, eat, and keep a sweet log of what happens to me over the next 4 hours. So far, the results are extremely promising! Even when I do start to drift up, it's much easier to manage with say, a temp basal increase rather than a whole other bolus which can lead to dropping low a few hours later...This is probably worth a whole post on its own as I attempt to expand it into practice with other meals.

So that's my diabetes essentials as of now so to speak. Of course there's so much more...this post has really had the opposite effect of catharsis because now I'm thinking of so many other things I want to write about...so I guess I should say, to be continued!

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.