There’s a prehistoric beast on the loose who goes by the name of Grumpysaurus  Dex(com). (“Grumpy Dex” for short). You don’t believe me? Take a look at this footprint that I found on my keyboard!

Grumpy Dex spends much of her time dodging meteor showers (translation: ketone build-up) while looking for low-carb snacks to chomp on. Sometimes Grumpy Dex is grumpy or sad for reasons she cannot quite wrap her non-paleontologist brain around, but the mountains and valleys of the CGM graph confirm that she does not physically feel well in these moments.  Regardless of the cause, she carries a lot of guilt in her tiny T-Rex-like arms.

Grumpy Dex gets a raspy voice after playing Whose Roar Is Louder, Anyway?  Her thick dinosaur skin is unable to be pierced by even the 8mm BD insulin pen tips.

I have spent some time trying to catch Grumpysaurus in a net, to tie her down in one place and ask what is wrong. Following the trail of footprints got me closer to the source: Diet Cokes here, coffee cups there. A trail of peanuts led me to her lair.

Once inside, I turned and faced the mirror.  What I was looking for was right in front of me. Grumpysaurus Dex was, in fact, me — me tangled up in a Jurassic Park of diabetes lingo within my own mind.

*****

During DBlog Week when I read this post from Scott, I admired how brave he was for sharing such intimate feelings. I owe you all that same level of truth right now.  The phrase “It’s not you, it’s me,” has been muttered in many of my romantic break ups from the past. Yet when I write it today, for the first time I can say it with conviction and mean it. My mood is not due to anything said or done by members of the #doc. These are simply growing pains while reconciling my place in the world in light of the past, present, and future.

At the beginning of May, my doctors and I were pumped up. We had finally turned the diabetes corner! There was a noticeable difference in the pep in my step and the smile on my face. My friends commented on how relaxed I seemed. I got a glimpse of what it was like to feel good again, and I was hooked.

After twenty-four years of type one diabetes, I have built up a wall regarding emotion. I can’t be too happy because things may come crashing down at any moment. But this time, I did show my emotion. I emailed my doctor excitedly with picture-perfect CGM charts. I indulged in carb-filled snacks. I did not feel the lethargy- both mental and physical- that prolonged hyperglycemia evokes.  Instead, I allowed the thought “I am happy this weekend” to cross through my mind as I watched the sailboats in Newport, RI, harbor while sipping on beer with my friends.

And then, just like that, diabetes broke my heart- in a matter-of-fact, rather than melodramatic, sense. The good blood sugar rug got pulled out from under me, and my heart got bruised in the fall. How can you take this away?! My family and friends were happy. I was happy. Nothing hurt. And now it all hurts! My pancreas, my pancreas, why have you forsaken me?

My anger came out in self-bullying tweets, many of which fell victim to the “tweet and delete” method.  Still, they existed at one point in time, and, therefore, I need to take responsibility in good conscience.  Popular themes included: “You’re [Grumpysaurus] not good enough today.” Or there was the mask of cocky tweets: “My GPA is rockin’, so it makes up for my mediocre blood sugars.”

“My best friends have gone to combat. I’m afraid of carbohydrates. Grow up.” That’s not a fair comparison to make, first off. My friends are certainly heroes. But my fight is just different than theirs was.

There is a level of deep-seated pain there that is beyond diabetes and the #doc, and I am sorry that any of you have to witness that battle with myself via social media. I am working on this. I want to be better than that person, and I have to work through those emotions instead of  further cementing the bricks in the wall.

My biggest fear is that if something “bad” [insert scary diabetes story] happens, outsiders will think that I did not try enough. The truth, though, is that maybe I have tried so much that it is somehow too much.  In the process of surviving, I have forgotten what it means to live.

I have feverishly read thousands of diabetes-related documents and articles. I have tried to intellectually get ahead of a disease that quite often has a mind of its own. I have drowned myself in a sea of information overload. When you are already overwhelmed, does perusing the press releases for every new iota of diabetes technology really matter in the immediate moment?

Secretly, all I really wanted was for someone- anyone who understood- to hold me close and tell me that it would somehow be okay, to allow myself to emote freely via waterworks of tears. Even if that imaginary person has to lie to me, even if we both know that it may not be okay, perhaps even Grumpysaurus Dex needs to shed the thick skin from time to time.

What if what I can do is enough- tiny blogosphere roar and all? Compartmentalizing all sorts of scientific data in my brain may not be my greatest asset to myself, nor to the diabetic community right now. Perhaps the goodness that I can give back to the world as a type one diabetic is simply by telling my story honestly and with no edited outtakes on the levels of pain and frustration that I sometimes feel.  Maybe someone else hears that little roar and nods along with it? 

Perhaps God wants me to instead follow my heart, even if it seems like my dreams are small compared to others’ work, even if it seems like some days I am floundering no matter how many pre-boluses I take?  Establishing a figurative “little lemonade stand” scholarship fund to sponsor mental health treatment for a diabetic may play a small role in changing the course of someone else’s life for the better.  Over the next year or so, maybe that is enough; that idea could be my puzzle piece fitting into the context of diabetes a bit more smoothly than it has been. For various reasons, I may or may not achieve a target A1C, but that does not mean that I should be a lost cause.

Why not start that scholarship fund after I graduate from school, instead of pushing it off for a few more years?  Doesn’t that do more justice towards strengthening the faith that I have kept since I was a very little girl- just shy of three-years-old, walking out of the hospital to tackle the world, and diabetes, too?

The interim solution, I think, is to take a step back and do some soul-searching.  Allowing myself to truly feel my growing pains, rather than live-tweeting them, just seems like the right thing to do.  The #doc is a great community, and I want to offer it positive value in return for all of the goodness it fosters. Complex diabetes information overload has a time and a place.  In this immediate moment, I want simplicity. Frankly, I want a real cure. And a guilt-free cupcake. And that epic cure party on a Bahamian island with all of you and an open bar filled with sugary beverages.

I will continue to blog and tweet- just not as frequently for the next couple of weeks.  Perhaps I will scroll past the live updates on the latest diabetes technology and instead read about trashy reality TV shows.  Don’t get me wrong; anything that improves life with diabetes is a win for all of us.  But right now, Grumpysaurus Dex will leave the worrying about the scientific facts and the technological funding to the Pterodactyls and the Triceratops of the diabetes world.

I love you guys.  I always will.  Don’t mind me while I shed the Grumpysaurus skin, okay?

XOXO,

Ally Saurus