Saturday, May 30, 2015

Diabetes 101

When people ask me about my diabetes (usually while I'm explaining my glucagon kit or awkwardly bolusing in front of them), I struggle with giving a good answer. On the one hand, I don't want to leave them with the impression that it's simply about sugar. On the other hand, I don't want to overwhelm them with a loooooong, drawn out, semi-scientifically accurate response pieced together from my doctor's visits, personal experience, and internet research.

If I had all the time in the world, though, this is what I would say. Who knows what I would say a year from now, 10 years from now, I'll probably still have diabetes then so I'll get a chance to find out I guess.

When people say, Does Type 1 mean you were born with it? I would say this: NO HELL NO!! No one was more surprised than me to discover that, at the ripe old age of 24, I had a disease with "Juvenile" in the name. Type 1 means this: Normally, your pancreas produces cells called beta cells. These cells contain, among other things, a hormone called insulin, which "unlocks a door" aka "signals a receptor" in your cells (which cells? I still don't fully know...) to take in glucose from your blood whenever you eat a meal with carbohydrates in it (the carbs are broken down at varioius rates and then flood your system as glucose). These beta cells also contain (and this is a growing list, I might add), a hormone called amylin, which controls the release of glucose into your body and helps you get that satisfied, "full" feeling after you eat. They also contain something (name??) that helps you absorb potassium, a key vitamin (mineral? nutrient?) that helps keep your heart rythmic and your brain not-swollen, among other things. When you have T1D, it's an autoimmune disease. Meaning that something (gluten before age 3 months? infection? rotten luck??) turns your immune system on and I mean TURNS IT ON. So now it's going crazy, attacking those very same beta cells and killing them just as fast as your panc can produce them. At first, your panc keeps on trying and produces beta cells at a normal rate, which then just keep getting killed off. AKA your "honeymoon period" adjustment into diabetes, where things are a lot more manageable with a lot less insulin. But over time, your pancreas gets tired of this shit and stops producing beta cells at all. So you're totally deficient. Insert something about a c-peptide test here, which I'm not really sure what that is, tbh. So for me, this basically means: something happened. Immune system on, beta cells dead, me in hospital, artificial insulin.


When people ask, So what is insulin? or So you don't eat sugar anymore? I would say, also, NO HELL NO. Sometimes I even wake up in the middle of the night to eat sugar, pure sugar, which is not a habit I was previously into. The way I think of it, is like, it's a BALANCE. So when you have sugar, which, I repeat, is broken-down carbs, any kind of carbs, including super-healthy high fiber/high protein cereal, fruit, nuts, and a lot of other things besides just candy and cake, enter your body, unless I do something about it manually it's just going to float around in my bloodstream and make me feel crappy. So enter the insulin boluses (aka doses) to balance this sugar out. Because your body needs carbs as an energy source, so giving the proper amount of insulin should balance these carbs out and allow them to enter your cells and give you energy. However, talk about easier said than done. There are many many many MANY oh did I mention MANY variables that affect how insulin, carbs and your body interact. Therefore this is less than an exact science, especially when you add in the human labor. So sometimes, due to miscalculating, or unexpected exercise, or illness, or bad luck, or a south-easterly breeze, there's too much insulin running through my system, looking for glucose to suck up. When there's none there, that's where the problems (read: dizziness, anger, general symptoms of starvation, fainting, seizures) start. So that's when I need to chow down on the sugar. And manipulate my basal doses. And make a million other small decisions based on a variety of information in order to save my own life.

What people don't ask (but should) is What does affect your blood sugar levels? My answer would be, virtually everything. Stress, illness, the slowness of injected artificial insulin as compared to the onset of food (meaning that timing is everything). Emotions, exercise, your period, medications, where you place the injection site for your insulin pump, whether or not you have eaten or given insulin recently.

When people say Yikes! That's a lot of shots my answer would be yes, it is. And no, they don't all hurt but a significant portion of them do. And in a non-self-pitying way, I can admit that that's not great. And I can also see that it's a lot less shots than I would have had to deal with 15 years ago, so I try to keep that in mind as I force the CGM dagger sensor in.

And finally, my personal favorite, when people say Wow! I could never... my answer would be, sure beats the alternative. In fact, I've LIVED the alternative, and I can say for certain that life with insulin, and carb counting, and hypoglycemia, and stress, and injection site scars >>>>>> life without insulin. 

Saturday, May 23, 2015

Monster

They told me it was insulin, water, and potassium in those I.V. bags.

But to me, it might as well have been Monster-Energy-Rockstar-Superfood-Protein-Caffeine-Awesome Drink. 

It might as well have been my life back, in a bag.

Monday, May 18, 2015

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!

Saturday, May 16, 2015

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. 

Saturday, May 9, 2015

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. 

Saturday, May 2, 2015

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!