Remembering July

In the last week, I went back to work but my mouth blew up, my sugar rose.
And so again, I went home and stewed. Drank icy water and ate Cheerios, one by one.
I slept for hours that turned into days.
Watched nightfall. Slept. Watched morning come. Slept some more.
Took Xanax. Took Nyquil. Took too much of everything,

I took the train back to the city last night, back to work and a life I forget I should be living.
I came home and took nothing.
I was done with the haziness, but then I tossed and turned and I couldn't breathe through my nose, so—
Nyquil. Again.
I slept until I woke up again at 4, my favorite of these bleary-eyed hours. These hours where I wake up and think:
Shit, that hurts.
Or:
Fuck. I have no money and I have to pay rent and I want to take that class and FREAK OUT!.
Or:
That’s a good one, I should write that down.

But last night, I gave up my desperate bid for sleep, as I so often do.
My stomach growled and I made popcorn, kernels falling to the kitchen floor.
I am always thinking:
I will clean them up later.

I came back to bed and looked at the calendar, each day of July, a month slowly coming to a close. I touched each day with my finger and scrolled the tip of my finger across my iPhone, lighting up day after day.

Days I don’t even remember happening.

I haven't been able to figure out what my memories of July will be.
It kind of sucked, didn't it?
Maybe we’ll say this, next year or in ten years or maybe we'll never say it at all, just forget.
It kind of sucked, you were in the hospital and then you were better, and then almost again...
Maybe I should just forget.

This was good,
This was bad,
This happened,
That did not.

I'm always looking forward just to look backwards. Dreaming of October while I'm filling up July with stories, stories I'll tell come Fall.

The summer of two thousand and ten, let's see, I was twenty four years old and things happened, I went to a concert, Meghan had a birthday party, I tried to swim every weekend...

What will I think in December? What will I say now? What happens next?

Morning

I’ve been awake all night, so at 5:30, after tweeting and writing and editing and stressing out, I grabbed Shea again and hit the pavement.

The grass was still wet from last night’s storm; the whole town shone with color.

Light streamed through the trees, branches lush with summer.

It was a bit chilly, so for the first time in months, I wore long sleeves and flip flops. And I put on sunglasses when a neighbor passed on his morning run.

Every street was a revelation in this light that I so rarely see.

Finally, as we turned home, I caught the sun rise over the lake.  Lyrics from one of my favorite Bonnie 'Prince' Billy songs came to mind:

I never thought the sun would rise in the east and set in west/ I figured I owned just dark skies and that darkness fit me best.

The sun rises.

It is another day.

Go folks, go forward. Trust your brain, trust your body. Go folks, go forth.

Cigarettes and Chocolate Milk

Like Rufus here, sometimes I think that I may be my own worst enemy.

Friday I woke up and suddenly, my mouth ulcers were back with a vengeance. I’d been feeling like shit all week and had slipped up a few times on my healthy diet, but I was mostly a Very Good Girl. (I didn’t even go out at all last week, as planned!)

I had been taking a form of prednisone (an evil steroid) to reduce my symptoms, but I took my last dose a week ago so when the sores returned and the joint aches reappeared, I panicked. Not to mention I was still experiencing diabetes from it, all without having insulin to treat it.

But I was determined. I worked from home for half of the day Friday until I dissolved into a half-conscious mess but no matter what, I was NOT going back to the ER. So I took some leftover prednisone I had lying around and again, my blood sugar shot up (I don’t have a history of diabetes, ever. But prednisone can cause it, along with a host of other extremely horrible and generally depressing symptoms. LIKE MAKING YOU FAT!).

Last night I called my doctor. He said “don’t change your diet, let’s just see what happens. If your mouth or blood sugar gets higher, we’ll need to admit you.”

So instead of boozing with Sam for her belated/early birthday party, I hung with my cousins/siblings/friends and we watched Reptar on Ice (classic) and I had a small bit of ice cream. My thinking? “you’re high (on only legal drugs, duh) and life is short”. (Note: My mouth and throat can only handle: ice cream, tiny Cheerios, one at a time, and ice cold water and diluted coconut water ). I had my ice cream (a little bit fatter/a little more harmful for me), took more prednisone, and went to bed.

I just woke up. It's 5 am. Mouth worse. Throat worse. Blood sugar a whopping 254.
 
Which means: I may be back in the hospital tonight or tomorrow.

Which means: Fuck.

Update: It's 10 now. Mouth is so painful but my blood sugar's below 200. We need to stay below 200, people. BELOOOOOOOW 200.

Ed Note: I wrote the post below on Thursday and am just putting up now. My face still looks like it was beaten by thorns. Feels like it too. I am constantly wearing 2 pounds of makeup.

Hotness-Bergin Style

So it’s been nearly two weeks since I sobbed and pleaded and begged my way out of NYU Medical Center. I spent my convalescence sobbing over Six Feet Under episodes, writing a ton of emo blog posts, and eating box after box of Honey Nut Cheerios. I ate mostly healthy besides this, as it it turns out I might have DIABEEEETUUUUUUUS (this is how I will refer to the disease, if I get it).
I’ve been detoxing from the extraordinarily high levels of methylprednisonolone I was on for two weeks. I took the last dose the other day. This drug is lethal, people. It really did tamper my lupus symptoms, but it threw me into drug-induced diabetes.

I also have developed some sort of skin rash on my face that makes me look like I got a chemical peel. It burns. It itches. It is uuuuuuuuugly. Remember that episode of Sex and the City when Carrie makes Samantha leave her book party because of her face? YEAH. THAT’S WHAT MY FACE LOOKS LIKE WHEN IT IS UNAIDED BY MAKE UP.

I think I’ve been pretty reasonable. I’m down for being sick, not being able to get out of bed, spending weeks in the hospital, but you do NOT mess with my face! I have enough damned scars, body!

LEAVE THE MONEYMAKER ALONE.

sometimes i remember...not to plan things.

sometimes i remember when i was sure of what was real, when everything i knew about life was in the crook of my mother's elbow and the smell of her hair.

when i was ten months old, they told my parents that I was sick and would stay that way.

still, i was sure of what i knew until i grew and my ailments did too. i sprouted (not too tall) and grew new wings and things and then...i missed 87 days of my junior year of high school. i spent a semester of college with cancer. my friends looked at me, awkwardly.

i know hospitals and cups you pee in and how to break this radio silence of sickness with a joke.

between childhood illness and what is now my Reality, i have done things. things i know and am sure of. i have traveled, failed at skiing, made jokes, written stories, gotten hangovers, and messed up a solo in my 4th grade chorus. i have drunk-dialed. (oh, how i've drunk-dialed.)

i have been in love and packed myself in tight with friends and mistakes and memories.

none of this is linear. none of this can be predicted, for any of us. and especially for me, when my health often hangs so precariously in the balance between the Outside and the Inside; between my Bed and the Bar.

and so, because of this, i don't plan long-term. i don't plan short-term. it's not because i think i'm dying. (i'm not.) but with just a cut in my mouth, a tooth abscess--my whole body, my whole weekend could fall apart.

i have "commitment issues", with everything from drinks plans to meetings to brunches to concerts to vacations. flaky, one or many or everyone has called me.

but now, tonight-- now i am looking at calendars and thinking: i want to go away but i'm not sure, and i need to go to work, and there's this party i wanted to go to, but i just don't feel...up for it...

so.

instead of these ideas, tangents, hopes, invisible itineraries --

i'll just plan to get up tomorrow. move around. walk the streets. try to get to work.

live.

right now.

scars, bruises, beauty

i have a four inch scar along the length of my neck, from where the cancer was removed two years ago.

i have a deep scar from an outburst last summer that ended with broken glass and a foot that bled for a week.

i have a tiny scar from trying to cut open a bag of candy like i was slicing a bagel. (idiot.)

my hands have been so constantly swollen from the lupe that they look old and tiny. kind of like carrie bradshaw's hands, withered from her self-pity and cigarettes.

my face has little marks where things where cut out and never replaced.

my veins, collapsed and taken from so many times, look tired, and bruised.

this last time, they hit every one on both arms, each spot more than twice. 

lauren captured it beautifully in this picture here.

they will heal, too. scar tissue has been formed since i was twelve but there are ways to do what we have to do. (hey, if a heroin addict can...)

on my belly, two scars are etched where my appendix was cut out. 

these things will never disappear. 

and the truth is?

i love them. i love them because they are physical proof of a battle, no matter how big or small. that something bad/good/stupid happened but it healed. it might have bled, hurt, caused stress. but it has healed, leaving a faint trace of what could and should have been.

like a tattoo that we get to remind us of who we lost, my scars remind me of battles both big and small. fights that cost more than others. times i will always remember when i look down and think: look what happened! how will i do better? how will i be stronger next time?

i have been me, forever. sometimes a little frayed, worn, and weary. but always me. 

and these scars? it reminds me of how time, so slowly, eventually helps to heal our wounds. it does not erase them, or forgive them; rather it allows the pain to recede and leaves us with this mark, this everlasting proof. it leaves us with hope that maybe we can all be healed. gaze at what has happened and look up with the ability to tell our story. the whole, truthful tale, as painful or as beautiful as it might be.

because even though we may have loved, and lost, and hurt:  we are still here.

(please share your scar/tattoo stories below, if you'd like. i love all gross stories, so don't hold back!)

Green

When I see you
I cast my eyes downward
at the
leftover stubble
with bits of white
that tell me you will be gray soon.

But
your eyes are trained on mine.
Those green eyes that
every woman who has loved you
has loved.
I wonder if
they ever saw ‘em like this,
brimmed red
clashing with the swirl
of the colors of your shirt.
I wonder how many
were in it this long,
this far.

And yet--
the red green of your eyes
light up
like Christmas decorations,
when I call you names
when I tap into that secret language
that is only ours.
When you grab my hand,
and hold
me still.

But when I hear you
saying ‘look me in the eye!’
I stand up to leave.
I could not stare any longer
or hear any other words
that might bring me closer
to you,
you old man
you terrific mess.

Trust, Fear, Vulnerability, and A Very Long Post.

Today is Friday, or says the dry-erase board on my wall. Friday, July 9th, 2010.


Last Friday I was drinking a margarita with Lauren in Bryant Park.

I came home for the weekend. I had a great, great weekend. I have such proof of it; through stories and pictures and the lights of the sparklers I can still see when I blink.

The weekend, that weekend, my favorite weekend of the year will be known as the one that set me over, brought me to where I am now, a Friday night at the NYU Medical Center.

* * *

Lauren just left. She has offered to visit each and every time that I have been hospitalized, each and every time since we've known each other. That's five times in thirteen months. 

I do not like visitors because they have to see me, like this, all foreign and sick. (Also bra-less, unshowered...okay, well maybe that's not so foreign after all.)

I knew there'd be a camera (what's with that chick and her camera?) so I put on a little bit of makeup and a bra. I fell asleep though, before she came and I woke up to her chatting with my mom at the foot of my bed.

I had no idea where we were. I thought maybe on a cruise ship. The half of my room reminds me of a tiny Royal Caribbean ship. One chair, big windows, bed. Complete with a striking view of the rotting East River!

I was out of it. I was out of it because I've been on morphine for four days. I haven't slept at all.

Earlier, Christine--a coworker and friend, a trusted new member of the "you can visit me" circle--also stopped by; I was asleep and I looked up and there she was.

And again--I was confused. Where was I? I turned over. I tried to talk. Pain flooded my mouth.

I put the Magic in my mouth. (That's what Magic Johnson bitches' said!) I've been swishing with this disgusting combination of chemicals called the Magic Mouth Wash. It has lidocaine (like novacaine), and Maalox, and other words I can't pronounce. It's another drug, but a good one. When I put it in my mouth (that's what...), it feels good (that's what he...).

The morphine I take is lethal. The Xanax I swallow is dangerous. The Plaquenil can make me go blind.

But right now, my pain, confusion and lack of sleep are more dangerous.

How many nights have I spent typing for an answer, Googling cures? 

Wasn't it just Monday that I ran through the water park with Roarke and swam laps in the pool? That I felt whole, healthy, sun-kissed?

I can do better about my health. I hear it all the time from the loved ones who snatch beers out of my hands and give me a dirty look when I sneak a piece of bacon. I concede to their point--maybe I should stay in at all times, drink water and eat only the vegetables from the local farmer's market. But I have tried, tried harder than ever in the past few months to temper my diet, eat better, and drink much less. I cannot say that I have completely succeeded, but I can say that I have not failed. I have become a little more responsible, a little less stubborn.

But I cannot control this disease, whether I do stuff or not.

I am always missing or not missing something important.

* * *

This afternoon, a doctor walked in, talked with me. Said my primary rheumatologist would want to discuss options in her office next week. I asked what they could be, though Google had told me long ago-- weekly walk-in injections, minor forms of chemotherapy. Chemicals, chemicals, chemicals. So many syllables in these drugs, words I do not want to know how to express.

Every autoimmune disorder evokes the memory of suicide--the body tries to kill itself from the inside- out. Sometimes, it succeeds. For some, lupus is just joint pain and fatigue. My lupus was a piece of cake until I got cancer, lost my thyroid and chucked my wobbly body way off the track.

And late at night, I am mad about that. Why did that have to go wrong? I was not short on adversity (or height, for that matter). I have been sick and therefore different since I was ten months old.


The cancer wasn't necessary, but the cancer wasn't half as bad as the aftermath.

We are all wondering these things.

For me, lupus is now more than chest pain and mouth sores. Its impact has steadily grown to the point where steroids are always a yes. Scary drugs are given to calm my mouth. To pry open my jaw just a little bit more. To feed me. Shove ice down my throat.

This time, my pancreas was inflamed. My blood sugar shot up (high, high, high). My mouth did not want to change. I soaked my sheets in the break of a fever.


Stubborn. 

Why don't I feel afraid about what might happen next? I don't feel scared. I don't feel acceptance. I don't feel denial because I don't know what's going to happen next. I don't feel anything.

Those 5 Kübler-Ross stages of grief?

They are not permanent stages. They are denial one day, acceptance another. Anger is the scar I have in my foot from kicking in the glass door. Denial manifests itself in the shots I take at 3am, at some hipster bar in Brooklyn where they come free with a PBR. And acceptance is the peace I feel when i write something like this.


Each stage is as erratic as life. Nothing lasts forever. There is no permanence. 

* * *

Lauren took pictures of me while she was here. I wanted her to. She's a member now, of this little club. She said she didn't want to exploit me but it is important for me, for everyone to see what I look like in this state. Because this is real. Red-faced, make-up less, real.

I have spent more days in the hospital in the past year or so than I have in my entire life, total.

The memories are true, the charts attest. 

It is time to accept that much at least.

How I'm In The Hospital Again, Part One

On Monday I woke with a hangover and a mouth sore.

On Tuesday morning I got up for work, noticing my mouth had swelled considerably overnight. I could barely eat, talk,  and, worst of all, annoy my coworkers. The pain intensified with every movement of my lips, cheek, tongue.

I COULDN'T EVEN SARCASTICALLY SMILE.

It was clear I was having a rough day; my coworkers kept looking at me with concern, which made me well up with tears. (To think I was once called a robot! Suck on that, everyone!) I fled to the old office stairwell and cried with my sunglasses on. 

My mouth was so raw, wide-open and vulnerable that the tears only burned it more. I went back to my desk, stared at my computer screen. I sat on the lid of the toilet and rested my head in my hands. I shook and shook and laid on the floor in Keogh’s office. It was all very dramatic, especially because I continued to wear the sunglasses for the rest of the day.

Around 2:00, I realized I needed to take something to make it through the day.

Advil did nothing. Orajel? Squat. Then I remembered how I usually keep medicine on my person (like a drug dealer), or in my drawer.

Digging into my desk and purse (veritable medicine cabinets in their own right), I found a couple of pills. My heart swelled with joy. Xanax! That’ll relieve the edge. Allow me work in peace. Before I popped the pill, I thought... Hmm...these look weird. These are Xanax, right?

With my extreme pain driving my impulses, I ignored my gut and swallowed it. It wasn't long before I realized that I accidentally took Oxycontin (and a strong dose at that!) instead. Stoned and confused, I alerted my coworker, prompting her to post this on Facebook: 

Quote of the day, via my co-worker, who shall remain anonymous (unless you work at H&S and will most likely figure this out): 
"I found some pills in my desk and I’m in agony so I took one. Now I might pass out at my desk. Boss just called me and I’m pretty sure I sounded stoned. The pills say K 56 on them and they are definitely a prescription. I wonder what they are. At least I’m not shaking from pain anymore." Tuesday at 2:18pm · 

Yes, that really happened. Don't worry, Boss--I did good, fine work afterwards. Maybe even mediocre.

On Wednesday morning, I got up and tried to get ready for work. Instead, I punched my fist into the wall (it didn’t make a dent; I am very weak), scratched half my skin off, stared into the mirror and let two dramatic tears fall, all because I tried to stick out my tongue and brush my teeth.

I got back in bed and screamed (more like moaned loudly--I couldn't open my mouth) into the pillow.  My entire body continued to involuntarily shake from the pain and I kicked the sheets, myself, the AC until I was sweaty and breathing hard. My palms were red and engraved with nail marks.

Not sure of what to do, and knowing I couldn't verbally speak on the phone, I wrote my parents a frantic email, asking them to call my doctors.

I waited for their response. I took 2mg of Xanax (Next up on kelly-bergin.com: How Xanax Ruined My Life and More!) and passed out until 2.

When I woke up, my phone was ringing. My dad was downstairs (like…at my apartment in NEW YORK CITY downstairs!), ready to take me to the ER. Disoriented (take 2mg of Xanax and you try to call me in the morning...it takes 12 hours to get back to normal), I showered quickly, put on my Old Navy Kids' underwear backwards and dashed out the door.

In the waiting room, to avoid speaking, I scribbled down notes (medical history, symptoms, doodles of hearts) for administrators and triage nurses who continued to ask why I wasn't communicating well. I EVEN HELD UP THE PAPER TO SHOW, but their questions persisted.

At the bottom of the page, I was tempted to add: I CANNOT TALK, SO DON’T LOOK AT ME LIKE THAT. WOULD YOU DO THE SAME THING TO HELEN KELLER? HUH? WOULDJA?

In the ER, I got a room and then lost the room and then was given morphine and was looked at by blurry figures in coats and scrubs. Everyone looked so familiar. And why wouldn't they? I was there a week before, looking way uglier due to Little Mount Vesuvius (aka the huge, erupting staph infection on my face).

This time I made sure to do my hair and wear makeup due to the ratio of single hot doctors : attractive lupus patients. Of course my face was swollen and my hair dried weird, so I made sure to rock the Granny sunglasses. Can you believe I didn't even get one number! Don't they know I have to be a bridesmaid in less than ONE MONTH? And I still DO NOT HAVE A DATE!

After four hours of pointless tests in the ER and a haze of drugs and cool medical emergencies (SOMEONE CODED IN FRONT OF ME!!), I was finally admitted. Because he felt bad, my dad bought me a People magazine before he departed. (Bethenny got married, y’all! Her childhood wounds are healed and her baby’s ugly!) This lifted my spirits. And THEN I opened up to the page where Snoop Dogg talks about his daughter, who has lupus. Snoop! Lupus! Weed!

This might be the coolest thing to happen to my disease then since the time Lady Gaga thought she had it!

After my dad left and I got Snoop-Lupe-ified, they put me on a gurney and brought me upstairs. To my room, with an elderly patient and bedpans galore.

The excitement of Snoop the Lupe had worn off and the morphine had, too.

Once in my room, I dry-heaved from the medicines and cried from my raw mouth. I started thinking that I wouldn't wish this kind of pain on anyone-- not me, not Snoop Dogg's kid, not even Dick Cheney. (Clearly, I was deluded)

I laid back down on my hospital bed. Looked around, at the dry erase board, styrofoam cups, IV pole to which I was tethered. Each and every one a familiar object. 

I turned my face to the left and watched the morphine drip, drip, drip. I shut my eyes so tight it hurt.

Placed my hands under my body, fists balled, ready for a fight.

I took a deep breath and wept.

----------- 

Coming tomorrow: Kelly kills her roommate, eats a pudding (!!), and possibly contracts diabetes, pancreatitis or something else completely random and shitty!

July 5, 2010

On the Fourth, the sparklers lit around me and I was happy.

On the Fifth, I dashed down the stairs, out of the loft, into a heat so sure it felt permanent. Like I might feel this way forever, I might be this hot always. Forever, the sun lights up my skin.

The car was unlocked so I got in and waited for the Other Two to come down and drive me home. 8:30 AM on the 5th of July is an ugly, ugly place.

The ride home was the ride home: Gen was still drunk and Meghan was driving so I mostly told my story of the night before and we exchanged words--OMG, I can’t believe that happened, that’s crazy, I love the Fourth, God Bless Peach Vodka and Sweet Tea!. 

When I got home I went straight to bed and stayed there for a good, long time. My head filled with simple, self-loathing. I fought with my parents, but only inside my head. I listened to the sad songs, but not aloud. I wallowed for hours and felt bad for wallowing and why am I not stronger?  I typed and typed and called myself stupid because I am and when will I grow up?

The hangovers hit me worse than they used to. (Is this adulthood?) I am so often depressed the morning after. Alcohol burns. Even if the night before was bliss, the morning after I want to literally die.

It’s not good for me anymore, I realized on July 5, 2010. I am not going to stop drinking but I am going to feel through the days and realize when I should and should not take a sip.

Because self-awareness is all I have. Because getting to the root of my problems is the only choice I have if I want to live healthily.

No one said living with a disease is easy. No one said life is easy. But if I want to live forever—oh, how I want to live forever—I will do a better job of keeping sane. 

I will be better. Forever.