Happy Almost-4th Dia-versary to Me: I'm Writing a Book!

When I was first diagnosed with Diabetes, I didn't know what to do. I didn't know anything... I didn't know there were two types of Diabetes, and I thought an insulin pump was a sticker you put on your body that somehow cured your Diabetes. 

It's a week out from four years now, and sometimes I still don't know what to do. Sometimes I sit and cry because I feel defeated, I feel angry or mad or sad because I feel that Diabetes has one that day.

But there is something I know to do, and that's write. And I wrote when I first started - I still write now.

Four years ago, I started back on writing this blog with a fresh outtake on life. So, in honour of my almost-4th Dia-versary, now I guess is a good time to say that, I'm writing a book. I really, really am. I'm over 100 pages in! And I don't know when it will be finished, but it will be. And I want to share the first (very rough draft) intro and chapter with you.

Intro

          “I have Type 1 Diabetes” seems both an unfair and obvious way to start a book. I mean, for a Diabetic, that's almost outright laziness. Yes, I have Diabetes! Thank you, Captain Obvious. You knew that this book was going to have something to do with Diabetes when you decided to pick it up and read at least the title.

P.S. I feel like I need to disclaim from the get-go that I have the tendency to be very snarky.

Ok, so, how do I start adequately? How about...

“When I used to play the “when I grow up” game as a child, “growing up to have a chronic disease” was never what I envisioned.”

Now we're getting somewhere. Sentimental, a little bit over dramatic, but poignant and true.

Or,

“Irony: your biggest fear is needles, and you end up getting a disease that requires you to stick yourself over 5 times a day.”

Yes, it's just that. Ironic. Diabetes is a very ironic disease. More on that later.

Well, the truth is, there are infinite ways to begin a book. I've never written one, and I don't claim to be particularly good at it. Writing is my heart and soul, though. I feel like I can accurately take my thoughts from my head and transcribe them into words. I've always been good at it. As a child, I was obsessed with keeping diaries. Through thick and thin, writing has always been a part of my life.

So, whether it ends up being good or bad, there is one thing I feel that this beginning should accomplish, along with clarifying that this is, in fact, a book that is largely to do with Type 1 Diabetes. Well, it is, and it isn't. This book is my way of proving to you and to myself that Diabetes has impacted every single part of my life. But, on the same note, this book is a way of proving that Diabetes has not come to define me. Or limit me. Or control me. To say that Diabetes blows is entirely and unequivocally true. Diabetes is such a hard disease to live with because it is so taxing both physically and mentally. 24/7, you become a walking, talking carb counter- blood sugar monitor – insulin administrator – in short, you are an unpaid, overworked and over-tired pancreas. You're also a guinea pig. Do you think that Diabetes simply requires a set regiment to treat? A shot of insulin, and you're good to go?

Let me briefly walk you through it -

You sit down and have a meal. Ok, you have to count to carbs. You give insulin based on how many carbs you are eating, which implies that you have counted correctly. But wait. There's more! Are you going to do heavy labour or exercise-intensive activities afterwards? Have you done any prior to eating? Are you going to take a shower? Go running? Are you eating fiber or a high-fat meal? All of these things can affect the way that insulin effects you. What if you counted the carbs right and gave the insulin and you still have high blood sugar, or you wind up low? Are you giving too much 24-hour insulin? Do you need to lower your insulin to carb ratio?

Things don't go according to plan with Diabetes, almost ever. To a Diabetic, we learn to expect this. It becomes second nature, but still, it's hard, because a lot of the times we do mess up. We get it wrong. Living with Diabetes is like living on a see saw, and you are struggling to always stay balanced between high blood sugars and low. It is you who has to listen to your body and pay attention and problem solve. Sometimes, doctors can only do so much, and the rest is up to you. Sometimes, doctors are downright jerks, and they forget that you are not only a patient, but a living, breathing human being who has to manage this disease alongside all of life’s other challenges.

But now, back to the first point. Long, long ago, in a hospital far away...

I am sitting in my hospital bed. I have been in the hospital for a few days now, having been diagnosed with Type 1 Diabetes after going into Diabetic Ketoacidosis*. My friend Erica and I have been best friends since freshman year. We are closer than can be, and Erica and I spend a good time during those days just sharing the too-small hospital bed and sitting in silence, occasionally uttering deep and poignant things. Looking back at this time, I don't number the days because I realize that they took on a life of their own. Those few days in the hospital – and honestly I couldn't tell you how many those were any more – were a world unto their selves, where the rest of the outside world ceased to matter any longer. Within the fog of this other world, my conscious parts to reveal the memory of the time that Erica came to visit and handed me a small blue journal and pen. There was nothing special about this journal, except that it was given with the knowledge that Erica knew the deepest way in which I could express myself was through my writing. Writing had seen me through all of my past times of trouble, and Erica had been there to witness the hardest of these. In my self-pity (there was much of this after my diagnosis) it hadn't really occurred to me to seek writing as a form of therapy for my shiny, brand-new chronic disease. I looked at Erica appreciatively but looked at the journal ruefully. It was in my nature to make snarky (told you) and humourous responses, trying to set my mind on the optimistic route so as to curtail the emotional damages of the situations I faced. What I'm trying to say is, I looked at the journal and laughed. “I am going to be the worst Diabetic ever,” I told Erica. “And to play fun at this disease, I need to make not a self-help book, but a non-self help book. Everyone here has tried to give me enough help, and I’ve had so much I’m sick of it.­” Erica laughed and agreed with me. After she had left that afternoon, I began the rudimentary journal that would serve as the gateway to my true therapy – the blog that was born of the “Non-Self Help Book”. My blog became my oasis from Diabetes – it became my salvation. I arrived home from the hospital, 90 pounds, physically and emotionally drained, and armed with a mini pharmacy of medications. Every day was a new challenge that began with the number that reflected on the screen of a glucometer. Every night ended with a wet pillow as I cried myself to sleep, begging God the question of why I had been the one in millions who was cursed with this disease. The beginning was rough for me, which I suppose was to be expected.

I came home writing in my little journal, funny quips about how there should be sugar free milkshakes, and the steps to give an insulin shot (1. Open pen cap 2. Inject insulin 3. Do not chicken out from injecting insulin).

I had experienced depression before, and Diabetes came with its own set of emotional pathology, it's true. I felt isolated from humanity. I didn't know any other Type 1 Diabetics. I struggled with a very real fear of needles, and a sense of being limited by my body. I sat down at the computer one day and opened up my metaphorically dusty online blog. I think most teenagers probably went through the self-realizing “start a blog” phase. Then comes the phase of writing a few decent posts. And the subsequent phase of forgetting they have a blog for an unspecified amount of time. I actually kept up with my blog well in comparison to most of these cases, but before diabetes, it honestly lacked specificity or a solid theme to hold it together. I mean, I’m interesting to me, but there was really no interesting reason for others to read it aside from knowing me. But now, I watched things click together in my head as I began to open up a new draft and document the series of events leading up to my diagnosis. And things really clicked when I saw how many people read it. Bad as it sounded, I realized that having Diabetes made my blog more interesting. People wanted to hear my story and my struggles. And writing them out helped me to cope with things. Everyday struggles of Diabetes became new material to blog about. Humour could be found in funny catchphrases and titles I thought up to summarize my posts.

And what's more... I watched myself begin to change with every post. Secretive, subtle Lacy, who bottled everything up, realized that life was too fragile to do that. And so I opened up and spilled all on my blog. My deepest emotions, my worries, my insecurity about my no-makeup face and concerns for how Diabetes would impact my dreams. What college in a new state would be like, alone and with a disease I was still stumbling to learn about. I began to open up, and with it, I realized how emotionally stable that my blog began to help me to be. What a sense of purpose by blog helped to give me. Diabetes had changed my life, but Diabetes also gave me a platform to stand on, an issue to follow and fight for.

1. Things More Preferable Than Death: Needles, and Writing.

I am looking at my body right now. It's spattered with a myriad of bruises varying in size, shape and colour. If you look closely, sometimes you can see little red pinpricks. My fingertips are callused over and covered in little red dots on the sides. This is my everyday reality: Diabetic. Broken. Bruised. Callused. Pain. Inconvenience. I live with it, and I am not madly unhappy. The truth is, you learn to become content with the lot that life throws at you. You accept it as inevitability, you make peace with the reality, and you push onward. At least, in my experience, that's how it works. So many people tell me (much to my annoyance), and I quote, “Wow, I could never have Diabetes. I hate needles too much.”

            Just think about that statement for a second though. One, I find it slightly offensive that you insinuated that I, oh, don't know, wanted to have Diabetes? And two, needles are slightly more preferable than death. But maybe that's just me.

But, I also look at myself from an outside perspective – like the outside looking in on me – and, allow me to be self-serving and sentimental about myself for a moment. I see a driven and passionate woman that fights every day for her goals and dreams. And suddenly, she is faced with this disease that makes her feel as though she is sometimes pushed to the wayside, a side actor in the limelight that Diabetes steals. Her fingers are hurt and bruised, and sometimes the insulin stings. And I think this:

My story deserves to be told. I don't want to go through this struggle silently, feeling like a martyr for a disease that tries to destroy me daily. This book is also my way of standing up to Diabetes. It may be a struggle I ultimately face alone much of the time, but I take comfort in the fact that I can share this struggle with others. Which, oh maybe-captivated reader, is precisely what I aim to do.

Humble - For R.

Be humble, for you are made of earth. Be noble, for you are made of stars.
What does it mean? It never changed my outlook. But it describes what I feel about life.
Humility is so important, but it's not human tendency to be humble.
I've always felt acutely aware of this virtue. I see our tendencies - the way other people have conversations, and they listen, and wait until the moment they can have their say.
I feel self conscious sometimes for talking too much about myself. Do I, or do I make it up inside my head? Do we as people do to many things just to benefit ourselves in the end?
Me, well, I need to shut my mouth, and listen more.
Ok, so that's part selfishness.
But humility... life knocks us down. And God wills us to be humble almost, through these experiences, chaotic as they are.
I grew up feeling like I ruined the things I loved. Best friends left, Dad wasn't around, family fell apart... then I lost my freedom, so loved, to an illness, and I lost people I loved, I lost two cars, and it seems like the things I love and desire I just push away. I am humbled. It has torn me down. My life as it was "supposed" to be doesn't exist.

But me, I have learned to be happy.
I was bitter at the world at 14 and bottled it all in and kept everyone out. But daddy, he doesn't even know it, changed my life because he told me that to be happy was to be a choice. And something in that resonated with me, and I took my bitterness and the darkness - the selfishness, the jealousy and the tinge of cruelty in my heart and I pushed it aside. I can't completely leave it - it's there, but I learned to choose to be bright, to have joy and to let it shine through.
To see the little things, the good things that we can love about life.
To let myself mourn and be down when I have to, but then understand that I'll get back up again - just give it time.

I have learned to be proud of who I am. I am the outcast, the one who always finds the group outside the group.
2nd grade me was driving to school with mom and I looked at her and said,
"Mommy, I'm not popular."
I don't even remember what mom said, but I remember being acutely aware that my societal status on the totem pole was not one of monumental importance among my 2nd grade group. And outside the group I stayed, as I grew, I always gravitated towards the quiet ones, or the different ones, or the slightly weird ones.
And I loved it. I loved them. And they loved me.
And I learned that that's not mediocrity. If that's going to be who I am, who I naturally became, well then, I'll let it be. It's not settling. Actually, instead of trying to conform or fit in, I blossomed into myself. I realized that I'm not content with the external. What I loved was inside. The deeper things. The meaningful ones, and my world was just a little more behind the scenes than my popular classmates.
It's ok. Because I'd make it home there.
I'm the one content with that. I have never been in the "in" group, never once, truly. The time I feel equal is when I'm with my homeschool highschool friends.
The time I feel capable is when I'm working parties in a business I created from scratch here.
PT school has humbled me.

I am leveled, in many ways.
But I accept who I am, The introvert, the quiet artist, studier, writer, reader. Lover of poetry and solitary walks in the park. The feeling of being alone in a crowded room. The freedom of dancing, the love of deep conversations and rushing to write down poems as they fly through my head, like snowflakes that have fallen and are about to melt.
I'm selfish, I'm emotional, I'm stubborn. I'm lazy in many ways, I don't like to ask for help and I get a thrill from breaking the mold. I break rules. I bend them. I do things differently. I figure it out.
I'll be a PT, but I won't be a PT like others. Watch me. I like to do things my own way, and sometimes that gets me into trouble. But I have this keen feeling of intuition - I know I'll be ok if I do it this way, just trust myself and guide through - and so I trod along on a path that sometimes is more complicated than the path I could have, perhaps should have taken.
But it's who I am, and I do it with love for life and with passion.

How do you learn to maintain everything about the person you are but bend to accept and humble yourself around others?
First you learn to accept yourself. To forgive. To have patience. To have drive, and to let yourself not be afraid to fall just so...
And know your passions. What do you love to do? Because when you do what you love, who you are shines through, no matter what kind of mask you wear for them. 
Do the things you love with love and do what you do with love and joy in your heart and that joy that can't be faked will shine through.
I take a moment to write a poem down in class or start a blog of what's on my mind but it's the little things I have to do to let the real me breathe, to let who I am still shine through in this world of MMT and muscles of cardiopulmonary and muscular foundations and Exam and Interventions and goniometers and so much PT it makes my head dizzy because I am in over my head. And to keep from drowning I do what I know to do. And I make it work.

And I let myself remember that no matter how long or hard my struggle, everyone else has problems as big to them as mine are to me. They are busy. They've had their hearts broken. And they know how to make rational decisions, that may not be rational seeming to you but they are to them (Benefits outweigh the costs).
I promise myself I'll let myself be understanding. I'll be kindhearted. I'll make even the things I disagree with a learning experience or opportunity. It's life - it's beautiful, crooked, messed up, imperfect, disagreeable, and it's that variety that makes it worth living.
Value the person, and then go from there. When you realize that we as people have intrinsic value - no matter who we are - it's easier to start to understand, even if you don't fully. What matters is you are willing to try, and people will see that.
Let it touch your heart, and no matter what bad may lie there, the good will shine through the more you try.
There are things about me that I don't like but I can't change.
And I could try to beat myself up about why that is, but instead I'll try these little things piece by piece - recognizing each opportunity to try and understand someone else and be kind as one of growth -
And I feel that I actually make a lot more progress than I thought I would.

How Diabetes is Like Caving

Diabetes is like... caving.
That seems like a weird metaphor, but bear with me.


My friends from high school are a little wild.
Last week during Spring Break we drove out to Fawn Run, Georgia - a little town nestled between the alabama and georgia.
I'd been caving before back in high school, but it had been a long time. Garbed in Goodwill jeans and my cadaver lab shoes, our group of 11 donned headlamps, knee pads and hard hats. We made sandwiches for lunch and then began  the trek up the mountain, which I had been warned got a little intense (we Floridians aren't used to elevation).
I was a fairly experienced hiker, so I could push through, but the rainy weather made it muggy, my hard hat was hot, and before long my legs were burning and sweat was dripping down my back.
Exercise! It's a joy. (Truly though, I love it.) I savoured my opportunities out of doors, and loved exercise that stimulated my senses on a variety of levels - that's why I love things like dancing and rock climbing so much. They're healthy exercise and they're fun. They're colorful for the senses. The people - the colours - the fact that both are like having to put together a puzzle in your head as you do them. This rock leads to this rock... no, that one... or, "that step after this twirl... and rock, step, rock, don't trip, stay on rhythm!"

It's truly a delight for the soul.

We hiked for about a mile, and finally reached the top of the peak - revealing a beautiful vista of trees, and tiny farms with barns in the distance. Mountains surrounded us, and nestled in the side of our little mountain was a large cave opening. We rested for a moment before donning our gloves. A lot of us left bags at the front as well as any electronics, but I kept a small bag on me with my glucometer and glucose tabs, ever-weary of my Diabetes and the danger it could pose. (Still building up to the metaphor! Promise!)
Finally, it was time to crawl into the darkness. I was faced with a thrill of anticipation as I started in after Keeleigh, one of the other girls on the "guys trip".

About 7 feet in, however, headlamp on, the cave entrance narrows to that of a small tunnel. I've been warned there's a cricket problem which is ok - I don't care too much about crickets - but what I wasn't prepared for was the SPIDER problem.
And holy hell, were there spiders. Quite a lot of spiders actually. On the cave walls. All over. Enough to make me queasy and claustrophobic-feeling, despite the fact that claustrophobia had never bothered me. I experienced a moment of hesitation as in my head I battled my inner fears. "This is what pushing yourself is all about, Lacy," I muttered to myself as I pulled my long sleeves down lower and kept crawling. I pointedly kept my eyes ahead, trying not to look at the wall with the gross, spindly black spiders on it.
Push through, push through, keep going...
Finally, I saw the cave widen out and there was a rope on the ground. We had to grab the rope and lower ourselves down a slippery rock, and finally, we were in a large open space, the spiders farther away from me. The rest of the group started crawling in.

And...wow.

I'm sitting there in this cave - it's so much more than what you'd expect, so much more than a mere hole in the ground. It's beautiful, it's fascinating, it's wild and mysterious. There's so much more than meets the eye.
We progress onwards through the cave, winding through tunnels and rooms throughout this giant system of underground caverns. The boys thankfully had caved here before and knew the way, as well as how to read the directions - had I been alone, I think I easily would have gotten lost.
I passed on climbing through the tunnel affectionately named the "birth canal" after learning how narrow it was - the thought of spiders shied me away from it.
The climb through did require more squeezing through narrow tunnels, so narrow we had to army crawl and even I wasn't sure my hips would make it through. It required spanning small chasms, and I was thankful for my experiences rock climbing that year. The cave floor become wet and full of clay in some places, and we built sculptures and threw clay at each others' helmets just for fun. We scratched our names into the cave walls and the year, and read old messages.

But one of the coolest things was sitting in the cave and then all turning off the lights.
It's then that you suddenly realize how deep underground you are. How out of league you are with nature. This labyrinth - this unknown - this darkness, surrounds you and the light almost provides a false sense of comfort. You realize that without the light, without others there for you, you'd be no match for ever getting out of the cave.

Which leads me to my metaphor: Diabetes is like caving, and insulin and my glucometer - my Diabetes super-tools, you might say, are my light in the darkness. And Diabetes is the wide, sometimes scary and incredibly huge, cavernous depths that are the underground caves. They aren't fully known, even by the most experienced of trekkers. You can never fully anticipate everything that will happen. There are scary things - chasms and dicey rope climbs down rock formations - spiders on walls and dead ends that lead to frustration. There's questions about what lies around the corner. And it's more complicated than you could possibly imagine.
But with the light and with the help, you manage. With a support system and insulin and your glucometer, you get through. You don't necessarily know what lies around the corner, but you have trust and keep going. One little step at a time.

In that cave with 11 other people around - a whole support system - back up, someone helping guide us along the way, lights with extra batteries and water, glucose tabs and a meter in my bag - I feel comforted. Safe. Secure. I'll be fine.

But stop and turn out the lights, and you realize just how real the situation is. How precariously "safe" and "secure" you are.
Without insulin and my glucometer - and I've been in those situations before - I am stuck in the darkness. My glucose meter tells me where in the wide world of possible blood glucose numbers I am at. It's my direction. My insulin is my light - without it, I don't stand a chance. It's what keeps me going at the end of the day.



We spent hours in those caves, and we finally crawled out, back through the spider-riddled entrance through which we came. I again, tried not to look at the walls. Thankfully as we had gotten deeper in the cave, there were less creepy-crawlies to bother me.
I guess one way in which Diabetes isn't like caving is just that there was an out with caving, and then we left it behind with nothing but fun memories and mud that washed off our bodies later that evening as we spent the night in Desoto State Park, AL.
There isn't an out with Diabetes, and it's not something I can leave behind.
But I was humbled by the experience nonetheless. I was humbled as I felt myself grow low from all the climbing in the cave and was able to test my BG - 50 mg/dL - and pop some glucose tabs. I was humbled as I thought of how lucky I am at least to have insulin and test strips, and a job that will enable me to buy them as needed - even if I don't currently have insurance.
My life is a precarious one and I am ever-aware of my mortality, as morbid as that sounds. Diabetes isn't the most serious illness you can have but it IS serious, and Diabetes is fatal if not treated - and, sometimes, fatal even if it is treated. Some people go to sleep and never wake up from lows. It's a scary world of testing, a tenuous balance on a scale that teeter-totters constantly, and it's 24/7 effort.
Diabetes is HARD.

But at least with the support, and the tools I need to keep me alive, I stand a chance.
And for that, I am grateful, humble, and I am strong - every day is a learning experience to treat better and live life to the fullest, no matter how big and scary and cave-like Diabetes might be.

Four Year Flashbacks (Part 3)

"It must be a mistake," I heard one of my  parents exclaim to the nurse softly.
"No," the nurse  said, repeating herself. "She will have to be on insulin for the rest of her life."
My heart sank a little, but hope still remained.
One of my parents came up to me. "Yeah,  no, we're certain there's been a mistake about the Diabetes. It  could be a number 0f other things."

I didn't see my parents together much. I mean, they weren't together.

I guess when your kid ends up in the  hospital that that's as good an opportuntity as any to have a reunion.

I still didn't believe it myself. Why should I? You don't just wake up like this,  do you? Well, I didn't think  so.  I had been "normal" just a mere three days ago.  Had been at prom three days ago.  With my friends. I  was about to graduate. This couldn't happen to me. I didn't have the time.

My parent's insisting that the diagnosis was a mistake fueled me on. Actually, at this point it was the last hope I could cling  to. Two nurses had come at me at dinner time with needles on both sides - I  would later learn that one contained Lantus,  the other Novolog.  But to me they were just  needle sticks, and this was like literally waking up  in hell.
My friends and their parents came in with apologetic glances on their faces, gifts of lovely flowers or soap, cards and kind words. Erica and Kaitlin, two of  my closest girlfriend's, came in to chat. "You've joined the terminal illness club", Erica said. "Uhm... you mean chronic," Kaitlin corrected her. Kaitlin had Juvenile Rhumatoid Arthritis. I was overwhelmed by the kindness, the support I never realized I had. People posted on my Facebook wall.
It made it real to me...

Except the reality of what they said I was couldn't be real.

And so I waited, thinking that after another conversation, another blood test or visit from the doctor that the news that I  wasn't Diabetic  would come to my rescue. Until then I was biding my time, waiting until I was well enough to get out of there, to get back to the real world.

A few days later they wheeled me from the ICU to an inpatient room, and my parents were in the room with me when a Doctor came in again.
"Are you sure it's not a mistake?" I heard them asking. "No one else in the family has it. There's no logical reason she could have it."

"Yes, we're sure, " The Doctor said. "She has no insulin and she will have to be on insulin for the rest of her life." He said it firmly, it seemed merciless.
I looked at mom, expecting her to argue... except she didn't.
And that's when it sunk in.
The light of hope alive in my heart went out, and in that moment I was stuck with this disease.

And this time, no one was coming to my rescue. There was no way out.

Four-Year Memoirs

"I think you'd be a different person if you never had gotten Diabetes," one of my friends told me. "I wish I could have met you before then."

He didn't mean it in a bad way. In fact, it got me thinking a lot over these last 4 years of my life. My 4 year Dia-versary is in less than a month now, and it's hard to believe it's been that long.
How do I react to that fact, that it's been 4 years?

Truth is, the first thing that comes to mind that I want to do is cry.

I don't know why. Diabetes makes me sad, but on a day to day basis, it doesn't make me that sad. It has its grievances - most of the time I hate it - but I struggle on through, trying to remain on top even during the glucose checks that clearly sometimes best me with a number that's too high or too low.

When I was first diagnosed, I struggled a lot with the question of who I am. I struggled a lot with the decision to be happy. I struggled a lot with convincing myself that this was still a life that was worth it, which it very much is.

Diabetes... I searched the internet for information, read the books my endocrinologist had given me cover to cover (I still have my copies of the "Pink Panther book of Diabetes" today and it's a wonderful reference.)
I was hungry for knowledge and desperate to arm myself with it because I knew, the more that I knew the better chance I had to overcome this and learn to live on top of it.
That's my way - knowledge is power.

Now I feel that I have done myself well. If I were to look at me now from the perspective of 4 years ago, I think I'd feel a little more hopeful.
I guess the number one disappointment though is simply the fact that I'm not perfect at this. And I can't be. I try so hard... I really do, but the numbers are not always where I want them to be, and I guess I did always hope that would be the case, but maybe that takes some time to improve on, too.

If there's anything this experience has taught me....it's that 4 years is not a long time.

4 years is not a long time to wake up and completely change your life.
4 years is not a long time to get used to multiple injections everyday,
4 years is not enough time to resent insulin for changing your body.
4 years is not enough time to feel ok about having to sit out during lows sometimes, rendered basically useless as your body struggles to maintain control.
4 years is not enough to learn everything there is to know about a disease that's so complicated it's like learning to speak a new language.

4 years, 4 years, 4 years. It's nothing.
And in that time, I've never had a single break. There is not "off day" of treatment. Either you treat and go on with life or you don't treat, and then you feel like shit or inevitably die.
No breaks.
In my dreams sometimes I can eat without worry.
But I don't remember many of my dreams.

Now it's so ingrained in me - Diabetes is such a part of me, I can be inebriated and still remember that Blood Glucose must be checked, insulin must be given. It's an essential part of me, and without my glucometer and insulin I'm essentially helpless in society.
It's funny, because the very things that take my freedom away - that glucometer and insulin -

Are the only things that give me the slightest bit of freedom.

My glucose meter is my eyes and ears for what my body is doing - my insulin is like the gas or oul to a car and it keeps me going, I can't run without it.
I am tied to these things to give me life.

4 years.

I look back and I am sad. Nobody ever promised me an easy life, but nobody ever knew I would grow up to have Diabetes, either.
Nobody ever said that this particular struggle of mine would be this hard.
I fight it even when I'm tired, I fight it when life is crashing down around me, when I have no time and I'm late for school it still demands my attention, when I'm low it demands my attention no matter what I'm doing.

Nobody promised me easy, but these 4 years have been hard.
And I changed. Inevitably, I changed.

All along, but particularly after Diabetes, I became the girl I needed to be out of necessity,
But I became the woman that I am out of my own design.
My passion for life, my drive and will to succeed in spite of all things - exemplified.
And God, who knew this young girl couldn't open up, had a hard time speaking her mind,
He gave her the push she needed to begin to express herself, the wings to fly.
Because life is too short not to share my story. Too short to keep it all inside.

And life is too precious not to love in spite of my illness. I love it differently now, but I love it all the same as if I didn't have Diabetes.

Sometimes I feel bad because I feel as though I can't translate my frustrations to others. It's like being in a room where everything speaks English and you speak Greek. You can't get through, can't translate. It's hard to feel judged for running low.
"Why are you low? Because you gave yourself too much insulin?"
"Yes, that's right..."
"Well, why don't you just give less next time?"

It's hard to translate that I gave my usual bolus but it must have gotten absorbed fast or my afternoon needs are changing again. It's hard to translate the guilt that I'd feel if I ended up high from not enough insulin - guilt that can be worse than the debilitating lows themselves.
Diabetes isn't black and white, and that's why it's so hard.



This blog is the closest thing I have to translating for you. And so I love it - I cling to it, I write when I am happy or just need something introverted to do. It is my oasis from all of the bad things of my disease, my place to share the good.
It's part of who I am.
And that is something I'm proud of. This is a testament to me, to my journey, to who I am.

Would I have turned out differently without Diabetes? I know so... and I think I would have loved that woman who I came to be regardless. Maybe I would have written less, maybe I would have had to pick a different subject to write about in a book.
But I guess it doesn't matter, honestly. I would have turned out just fine, but this is who I am now.
And the only thing I can do from here is move forward.

Four-Year Flashbacks (Continued)

Jell-o. That's all it is; it's like jell-o. I sat on the living room floor in relative misery, insulin pen in hand, staring at my stomach where I had rolled my shirt up to expose. 

I tried visualizing something different than my skin; anything. The jell-o; the orange, that the endocrinologist had had my parents practice giving injections to.

Except I wasn't an orange. 

And I was scared. Terrified, actually. I hated this - I hated everything about it - I hated the pharmacy of medicine I had been sent home with, I hated the bright red glucagon kits and the teddy bear that had come in the JDRF care package for new Diabetics, that I had gotten since I was still 17, not yet an "adult", by the legal sense of the word. I hated my family trying to tiptoe around me and make me feel better, as I walked to the kitchen toting my brand new black glucometer case, insulin pen always at my side, 

My mother, in her own caring way, didn't ask me how I was anymore. She asked, "what's your blood sugar?" And I loved her for it, because if anyone saw me for the miserable state I was in and cared it was her, but she didn't let me pity myself.

I was 93 pounds and didn't even have any fat on me. How was I supposed to inject in an area of fat? 

I leaned against the couch and felt I could cry.

I couldn't do it.

Couldn't.

I just couldn't. 

I was defeated, only a week and a half or so in. What day was it, anyways? I didn't know.

I had decided that semester I was taking all online classes through my dual enrollment program at Valencia College anyways - I was a senior at Apopka High, but I had never actually attended AHS. They just gave me free books, which is why I'd enrolled instead of staying technically "homeschooled", and this way I got a graduation ceremony, too.

I was only a few short weeks from finishing my classes at Valencia then, and then I'd graduate with my Associates in May - before I even walked for my High School Degree. I was proud of my accomplishments. But at the moment the thrill of graduation and my impending move to Georgia for college was dampened. More than that, actually. I felt depressed. Now, instead of being truly independent, what was I? Tied down, dependent on Florida medicaid and doctor's visits and insulin.... forever. Insulin, forever, that's what my life would revolve around. I scoffed. That's not freedom. That's conditional if anything ever was, and me - stubborn, 17, and ready to taste freedom - already loving and valuing that which I already had - felt like a bird stuck in a glass box. 

Just a girl in a glass box.

They could see in clearly but she couldn't get out, and they couldn't see why, and Diabetes was my box, forevermore.

I looked at that needle again, and my mother's words echoed in my head:

"If it was me, I'd just do it, because otherwise I'd die..."

I felt resigned. I gritted my teeth and stabbed my abdomen with my nightly Lantus.

How would I ever get used to this? Every day, multiple times a day...

That night, I crawled into bed, turned my face to the pillow and sobbed. I sobbed heartwrenching tears, because life had robbed me, it had robbed me of freedom and all things carefree. 

I sobbed and shoved my face into the pillow harder, trying to muffle the noise so no one heard.

I was alone, truly, I had all these supportive people but I was an island of the one at the end of the day, and I answered to the number on the glucose meter screen and the pinprick feel at the end of the needle.

I sobbed at the thought of what I'd become. I'd looked at myself in the big mirror on my dresser in my room that morning and tried on a pair of my shorts. They'd fallen off, and I was angry.

How could I not have noticed?

I sobbed because I hated needles, they were my biggest fear, and I wanted more than anything in the world to never have to deal with this again...

But I did. I had to deal with it now, and the sooner I moved on, the better.

Someday, people would stop acting sympathetic and posting well wishes on my Facebook wall and then they would expect me not necessarily to be better, but to be ok with it. "Got your blood sugars under control?" They'd ask, as though it was something that once you figured out it was locked in, you'd be golden forever.

It doesn't work like that - it's a scale you always wobble on, trying to tell it which way to go. I might be on the winning end one day but the next... 

I cried, and I cried for many nights.

And then one day I woke up and my blood sugar was 115 mg/dL, and I wasn't thrilled in a happy way, but I was excited, excited that my glucose was going my way. That was my first at-home victory.

And was it uphill from there? No. But I was encouraged my the feedback on my blog to keep writing, and I actually started looking forward to my daily posts. Suddenly I sought out stories from my new life that I could write about, things that I might share with other people.

And I saw my personality change.... I became bolder about life, more determined to appreciate it, share what was on my mind and not waste time.

And when I received my gown for my commencement from Valencia that May, two weeks before I graduated, I had an idea:

I would embroider I <3 insulin on my gown sleeve when I walked the stage for graduation with Valencia. And I would be proud - because I was learning to fight this disease, one step at a time.

And so I did just that.

Four-Year Flashbacks.

"Wow, this dress is falling off of me. Running must really be working," I said to myself as I looked in the mirror.

My strappy, expensive size 0 black dress that my mother had bought for me from Black House White Market back in November 2010 for my Tri Beta induction ceremony was sliding down my chest. I pulled it up and pushed out my chest to keep it in place. Well, it wasn't ideal, but I think it would stay on that way - as long as I kept adjusting.
It was March 2011 now, and one of my friends was celebrating her sweet 16.

My makeup wasn't done yet and my gold hair was haphazardly messy in layers of curlers. My eyelashes were long but fair; my skin was clear. I felt plain. Not stunning, but ok. I was in curlers after all. Normal: this was the face I knew, the face I belonged to. This was my body, though I was confused as to how my dress had gotten so large in just the span on a few short months.

I finished my makeup, putting it on with care and took my hair out of the curlers. I put on perfume. I went and I danced and I had an incredible time. There was a photographer snapping pictures before we all started dancing. I shied away from him at first.
"I don't like people taking photographs of me," I said.
"Are you kidding?" One of the girls said. I pursed my lips. I always felt shy, like they wouldn't turn out well. I felt pretty enough, I just didn't recognize myself in pictures - it didn't seem like me, was weird.
But at my friend Melinda's beckoning, I was pushed up the line and the photographer snapped a few.

That was one of the first times I'd noticed my body slightly differently in those months. In fact, a string of weird things started to occur. None of which I paid much attention to.
In March after the dance I got sick with the flu for a few days, and it was miserable. I had to take a few days off of running (I went fairly regularly back then) to recuperate even when I was well enough to crawl out of bed. I was thirsty all of the time - and I don't mean just passively thirsty. I would get so desperately in thirst that I would run to the fridge and just spend a solid five or ten minutes just filling and emptying my water cup. Then at night, I'd do it too.
I was hungry all the time. No matter what I ate, I just couldn't get enough food.
I would get up three times in an hour sometime to use the restroom, and 3 or 4 times a night to use the restroom. I hadn't had a period for 4 months by the time April rolled around, and although I was worried I didn't voice anything. I had usually been irregular in the past, anyways.

But I didn't notice the weight. You would think that's impossible - stupid, even - but as I literally shrank over 15-20 pounds in just the course of a few months, I didn't notice that my clothes were big. Thought people were just being "nice" when they said, "Oh my gosh, you're so skinny!"
I didn't think I was that skinny, I felt the same way I always did, and besides, I'd always been reasonably slim.
I didn't think much of the fact that I was running one day and collapsed on the track for no reason except for weakness.

Maybe not noticing it was the wrong way to put it. But I didn't spare a thought to it, didn't take the time.

And then April 4th, 2011 my life changed, and suddenly all the puzzle pieces of why I had felt the way I did fell into place.
The weight loss.
The constant restroom breaks.
The stomach pains, the insatiable thirst, the weakness, the strange taste in my mouth.

But I didn't know, couldn't know, that it was Diabetes, because it was a world I had never even considered. A world I didn't know, and didn't understand.
This world became the world I lived and breathed over night. I never asked for it - never considered it, until it was there, right there in front of me.
And suddenly I was an 89 pound, 12-year-old looking girl in the hospital asking a nurse what it meant to have Diabetes, and crying when two nurses stood on both sides of her and injected insulin into both of her arms.

This is what I'm reflecting on today - these flashbacks.
And am I sad? Yes, because part of my life was taken from me, and even were I ever healed, I would never have it back.
The sadness is when I see the bruises on my legs, or fresh blood from an injection accidentally flows out and stains my clothes.
The sadness is when somebody asks me if it still hurts.
The sadness is when I look in the fridge and see only 9 boxes of Humalog left - a dwindling supply that was supposed to last me the next two years.

But with sadness, there is hope. And happiness.
The ability to share my story.
The ability to have this blog, my shining hope and joy amidst this disease - the reason I've been able to turn my story around from a sad one, to a good one.
The future book I will write, and am writing now.
The underlying hope that even if I am never cured, I will not let this disease steal the joy I have for life or my ability to live like a normal person.
The ability to have experiences that lead me to other Diabetics just like me - out of the blue, in places like comic book shops and seeing an insulin pump on a girl's belt at swing dancing.

It's a steep price to pay, and yes, I have to dig deep to find the bright sides sometimes.
But will I be alright? I will be. Because I push on, like I always have - one insulin shot at a time, one carb count at a time, one blog post at a time.

Yes, it's a steep price to pay, but I'll pay it.

Because this life is and always have been worth it.