Month: June 2015

The Existential Crisis of Grumpysaurus Dex

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!

Grumpysaurus Dex

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

Cure Faith

Please note that this blog post solely reflects my personal opinions and is shared in the mindset of advocacy. Aside from the obvious point of being my parents’ daughter, there is no official affiliation to any of the people or organizations discussed here.

Heavy snow accumulations whited out the New England landscape as my father and I drove quietly into town to shop for a new ski parka. We were going to make a pit stop first, though. Some new research had just come out regarding a diabetes cure, and my father was on a mission to learn more. My teenage self was along for the ride.

We entered the medical library of my father’s alma mater. He had written down the name and page of the medical journal. There, I got my introduction to Faustman Lab. We photocopied the article, returned to the slushy streets, and eventually purchased a ski jacket.

I still have that jacket today, and to be honest, I’ll probably hoard it with my diabetes supplies for a while. Its shade is quite similar to the hue of the diabetes blue circle that so many of us wear loudly and proudly on our social media profiles. That jacket invokes a memory of hope for me, and it just seems wrong to throw it away- at least not until I’m cured.

coat pic for blog

When I was a young child, my father would tell me about the epic party that we would have when type one diabetes was cured. All of our friends and family would come over. There would be a carbs-only buffet. Pizza, pasta, bagels, muffins, cake, ice cream, Skittles, and more would constitute the main course.

After test driving my resurrected islet cells with a carb overload, the group would congregate on the front lawn. There would be a folding table in the center. And a hammer.

Dad would bring out the diabetes supplies- the blood glucose meters, the syringes, the vials of insulin no longer needed. We would raise the hammer high above our heads while the crowd watched. With as much force as we could muster, we would lower the hammer down onto the table full of supplies. We would smash what signified diabetes into smithereens. The heavy scent of insulin would fill the air as the glass vials shattered. The needles would be gone forever. My parents’ hearts would be sewed back together, and I could be a carefree kid who did not have to interrupt playground time to prick her finger and drink juice boxes like a champ.

My father’s diabetes cure party dream seems a bit dramatic when I reflect on it now. Alas, I totally get it. My parents were chasing their daughter around with needles, intercepting steeeeep blood glucose crashes due to NPH and R, not sleeping much, and doing it all over again the next day. Now, I have inherited those duties as an adult with more diabetes-friendly treatment options thanks to modern science. Yet the task remains difficult, and my hat remains tipped to all of the diabetes parents and diabetics out there.

Although the everyday ups and downs of diabetes caused some trying moments in our familial relationships, I know in my heart that my parents have never let their cure dreams fizzle out. Following their stoic example, I, too, dared to dream big, to imagine a world without diabetes. On the bad days those cure dreams have been my mental rosary beads. If I cling to the cure faith hard enough, it somehow sees me through the day.

Every generation has a moral obligation to make the world a better place. I have to believe that diabetes will be cured in my lifetime. Why not set our sights high? Time and time again throughout human history, dreaming big has paid off exponentially. If we do not dream big enough, though, we are stuck in a status quo of sorts.

Sure, modern technology makes life easier and has great potential for the future. I will always support anything that improves quality of life with diabetes. I will certainly take advantage of a perfected artificial pancreas system when the time comes if it means that I can feel better and stick around longer. But I will never stop advocating for the ultimate dream: to tell my future kids and grandkids that I had diabetes and that they will never have to worry about it thanks to a cure.

Due to my close proximity to Massachusetts General Hospital, as well as my father’s great interest in cure research, I have been blessed to donate blood and spend some time at Faustman Lab. (Full disclosure here: I am positively-biased as heck when it comes to Faustman Lab. While I find Dr. Denise Faustman’s diabetes cure research to be innovative and promising, I also appreciate her great value to the medical community aside from my own cure hopes. Dr. Faustman is one of the brightest minds and biggest personalities in medicine, and if I am going to put my faith in anyone to advance autoimmune disease research, it is her.)

Perusing the positive press about Faustman Lab’s Phase II clinical trials this week allows that cure faith to stay alive in my heart. No matter what my personal outcome is with diabetes during my stint on earth, I will be able to say that I lived in a time when great strides were made towards lessening the toll of diabetes. This is thanks to the hard work of Faustman Lab, other great research projects, our outspoken advocates, and the people who never let go of the dream.

One day my future kids and I will pile into the car to go shopping for ski parkas. I won’t have to pack extra juice boxes or check their blood glucose levels before hitting the slopes. We will warm up by drinking hot chocolate without pre-bolusing. On the car ride home, they’ll describe their big dreams, and I’ll do my best Kevin Garnett impression while telling them that anything is possible. Heck, we cured diabetes, kids.

Anything is possible.

FaustmanLab.org

Why Blog?

I have been experiencing a late-twenties existential crisis of sorts.

What am I doing?  Am I doing enough?  Am I helping others?  Where is my career going?  Do I really want to study what I am studying?  Should I go back to school after this degree?  I don’t like homework, but I like school, but if I go back to school to study A, then I have to cross B and C off the list. What if I like B and C, too?!  I love Providence, but I’ve been here forever.  Should I move? etc. etc. etc.

Every BuzzFeed article tells you that your twenties are all about this mental turmoil and that things will work themselves out later on.  And come on, it’s BuzzFeed, so it has to be right!

Then I start to wonder about blogging.  Why did I get into it?  Do I have a purpose in blogging?  Has that purpose changed?  Is that okay?  Should I take a break?  How long of a break?  What am I doing with my life?!!!

When I first started blogging, my posts stuck to two general themes:

1.) It’s about dang time that we cure this disease!

2.) Can someone out there offer a solution to my insulin pump problems- because this whole “insulin-getting-into-my-type-one-diabetic-body” thing seems kind of important?

Number 1 still tops my morning and evening prayer request list, and number 2 has found a workable fix for the time being.

So, why blog?

It is difficult to give a canned, one sentence answer when someone asks me that question. The obvious terms of “advocacy,” “friendship,” and “hobby” come to mind quickly. But there is purpose beyond even those things.

When we blog, we keep the conversation going. No matter where we live, our healthcare systems could all use improvements. If we do not talk about diabetes, who else is really going to? Who else understands how it feels to rip a pump site out via doorknob entrapment, or to wait for a cure that has always been 10 years away with an automatic “reset” button at every tenth year mark? Leaving our stamp on (virtual) paper pays homage to this courage and comradery, this part of the story that may otherwise be overlooked.

So, why blog? Because #AllOfTheThings.