My spiritual connection to diabetes

I may or may not have mentioned on here before that I was diagnosed in a hospital a few states away from home while on a road trip with the BF. That's a story for another time. This story, at this time, is about my long and illustrious history with diabetes, and the sweet (pun intended) irony of my diagnosis.

From the very second the diagnosis "diabetes" was thrown at me, I felt relieved. Like, 100% so incredibly relieved. Something was wrong with me!! Something that could be fixed! I felt little shock, no anger, certainly no depression. Part of this, of course, I'm sure had to do with my sugar-laden blood and general foggy headedness. Part of it, though, had to do with, for lack of a better term, my spiritual connection to diabetes.

The story starts back in my youth. Like many young scrappy 80s and 90s kids, I was big fan of Kristy, Mary-Ann, Claudia, Stacey, and the gang aka the ever-popular kid's book series The Babysitter's Club. And as all good fans know, in book #3, The Truth About Stacey*, we find out that the truth about her is that she, you know, has diabetes. She starts guzzling water, sleeping all the time, sneaking candy bars, losing weight, classic. She denies it, her mom drags her to the doctor, mystery solved. And for the rest of the books, Stacey has diabetes. Well I was always more of a Mary-Ann girl myself (I know, I know, lame choice), but I never forgot the many lessons I learned from BSC and diabetes awareness was one of them.

Fast forward to college...the internet is popular, WebMD is rampant, and I'm going through a small period of (what I feel) is extreme thirst. I'm waking up to pee every night and I've lost weight. Am I exercising and hydrating more to compensate? My mind flashed back to Ann M. Martin's vivid descriptions of Stacey's symptoms...Or do I have diabetes? We all know which one WebMD told me...and what I made the mistake of mentioning to a few roommates/friends/family members in an offhand way. We all laughed it off, and I definitely didn't have diabetes. Then a few months later...I happened to make the same internet-based mistake and diagnosed myself with the potential symptoms of being on the autism spectrum....and the makings of a permanent inside joke were created.

I even (and this is the one everyone's really kicking themselves over) brought it up semi-casually last spring when I was feeling so sick. Aware of my reputation and previous diagnosis failures, yet unable to deny what the almighty Google had said when I had searched my symptoms, I attempted to discuss things with the BF and one of my closest friends. To be honest, I don't really remember this, but they do...and they assured me that when I tried to suggest diabetes, they laughed. In my face. And then I laughed too and said yeah it was probably ovarian cysts like usual. Because everyone knows that internet diagnoses are crazy!!

Until. Until one fateful day last summer when I called my dad (way less likely to freak out than mom) and told him, haltingly, that I was in the hospital, had been there for a few hours, and I had been diagnosed with Type 1 diabetes. He laughed. I laughed. It was awkward, because then he was like what??? and naturally very concerned. But eventually the message was communicated.

And with that, my spiritual link came to fruition, and while I in no way actually believe that I brought this on myself, it still felt weirdly right in a way. Like, yes....this belongs to me. And so when I said earlier that I felt 100% relieved, that's not completely true. I think I felt more like 98% relieved. And 2% proud that I had been right all along. Safe in the knowledge that all future WebMD diagnoses made by me will be given the respect they deserve.

*I want the world to know that I did not need to google the number/title of the book, I knew it by heart. Go me!!
**I also want the world to know that I do not think diabetes is awesome. And while I think it's funny that I felt a "connection" to it from a young age, actually getting diagnosed with it at a young age is of course no laughing matter.
***Also if you are ever curious, there is a comedian called Mike Birbiglia (spelling?) who had his WebMD diagnosis come true too!! So it really does happen, people...

Me too!

"Ms. Gerber?"

"Hmmmm? Yes?"

"Ms. Gerber, I don't know if you saw me before, but when you were talking, I was giving you the me too sign. You know, when you were talking about how sometimes you get embarrassed doing diabetes stuff in front of new people. Or even in front of us! And you wish people weren't watching you, and you didn't have to be different. I was giving you the sign because, you know, when I fell down the steps last week and now I have these [editor's note: she is gesturing to several bloody scrapes and scabs] on my face. And sometimes I feel like people are looking at that and not even my eyes when I'm talking to them! So that's why I gave you the me too sign."

"Oh wow. I'm sorry to hear that you've been feeling that way! It's already bad enough you had to fall down the stairs, huh?"

"Yeah. I don't like it. But I thought about what you said. And it seems like it is making me a little braver. I mean, I'm not staying at home, like you said! And now if I ever have a friend who has scrapes, or even diabetes, or even something else, I'll know how she feels. And I'll always have candy for her just in case and I won't say 'ohhhh man you're so lucky!!'"

"Hmmmm, that sounds like a good plan. And I'm glad to hear you're prepared just in case."

Of course the conversation digressed from there....but man....aren't first graders magical?!? 

P.S. I'm not ashamed to say that I'm pretty proud of how I handled that teachable moment, too! Woot!

Stacks on deck, Patron on ice

So for the past few (9!!!) months I've been on antibiotics that have been absolutely hammering my liver. How do I feel now that I'm free to enjoy...er...adult beverages again?

Weeeelll let's just say that this song has never been more relevant.

Clash of the Titans

#thatawkwardmomentwhen...

You're sitting in class (not the class you teach, but the one you take at night afterwards) reviewing for the credentialing exam you're scheduled to take in a week and a half. You and your classmates are in the middle of discussing an in-depth case study of a student, going over key terms, analyzing needs. Your professor is warning you to look out for case studies that involve IEPs or 504s. She reiterates what a 504 plan is--legally mandated testing accommodations for students with a physical disability. Accommodations can be anything from special chairs for sitting, large-print testing materials, to access to medical devices in the room.

And as you sit there idly, listening, trying to take notes, daydreaming, wandering....all of that...screeches to a halt. You realize...hey. She's talking about me. I need that. Because of course you need access to your CGM and at the very least your pump. At the very very least some sort of glucometer. Because you can't take a 4 hour test flying high at 250 or wondering every 10 minutes if you're crashing down to 25. Because you have a disability and you need accommodations and when you took one of these tests last year, and the zillions you took before that, for all of your educational history and entire lifetime, you didn't need this. So you didn't think about it. But now you do, it's all you can think about and you sit there alone in class with the realization that you might not be able to take this test after all. And just like that.

CRASH. Two of the biggest stressors in your life (your career aka your real life and your diabetes aka your actual, literal meaning of the word, life) smash into each other at an astonishing velocity. And what can you do? When you forget about the D in PWD?

And you know in the long run (even in the short run) it's not a big deal, you can reschedule, it's not what you want to do but you can do it. But why? It certainly doesn't feel like you that's being accommodated. You made the plans months ago. You've been studying for a while now. You are ready for the test. But apparently, all the shit you drag around with you on the daily is not. That is what needs to be accommodated.

And you need to get on the phone fast and beg and cry and finagle and hope and pray to get your accommodations approved in approximately 1/3 the time it promises you on the website. And you do, and it's fine.

But that's tomorrow.

That evening? There's just a crash, and a smash, and some numbers thrown in your face and the ticking of your pump that you can't just leave outside the door. 

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. 

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.

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!