TRAUMA: LIFE IN THE ER (a true story)

Last week, when I was in California, I was talking to Claire about what it'd be like when I got home. I knew it was going to be stressful, just transitioning back into my family household. I knew it might stress me out that my brother would be back; just one more person to observe me and have an opinion about how I was living my life. But there were other factors, other dramas that I won't get into here for privacy's sake. Let's just say that I was not eager to return.

But, oh, how I needed to see Sadie. And my sister and friends and yes, even the crazy stressful family.

I got home and fell into routine, which had improved in LA. In California, I ate meals instead of snacks. I didn't drink sugary substances (aside from wine) and I rarely looked for candy or Chips Ahoy to feed my impulse. I carb-counted before every meal and dosed correctly most of the time. (Type 1 can be unpredictable. It can also be managed.)

My blood glucose was the best it's been in the nearly two years of taking insulin. My target number is 150 and I was close to that, hovering around 175. My doctor was proud.

Upon exiting the airport, I felt the old familiar sores begin to rise in my mouth. I had a batch in California, which forced me onto prednisone and made my numbers inch up. But it was nothing compared to the numbers my glucose meter ran early this week, when my doctor diagnosed me with two infections, multiple sores, and a sore throat and cold. I was on antibiotics again, and a higher dose of prednisone, and an antifungal. 

My numbers soared. I saw my first 300 in over a month and I realized just how heavy and terrible I feel when my sugar is that high. I had been so used to it for so long. 

When I hit 500, I want to stop breathing. I wanted to kill everyone in my sight, because they all seemed to be blaming it on me.

"Jeez, why are you just laying there? Come into the sun, get fresh air." Like I can move when maple syrup has replaced normal blood.

"Eat some salad." I literally ate half a pancake and four nuggets yesterday. These numbers had nothing to do with my eating.

"Silence." From everyone I reached out to who couldn't handle my weight this week. Which I understand. But still feels shitty when you're in the ER alone.

"You'll be fine at home." versus the doctors urging me to come into the ER.

Which is where I was last night. Alone, and in brutal fucking pain, and angry because the steroids had released their toxins into my body. And I couldn't relax or think straight.

So when I finally go discharged at midnight, and tried to eat, and realized someone had coated my precious mac and cheese with HOT SAUCE, which nearly killed me, which hurt so bad I dry-heaved...I blew up. I stormed into the house and grabbed ice cream. And my dad yelled at me that I was loud and he was stressed out. I had just spent 7 hours in an ER and I was on so much steroids, the Hulk would be a fitting description of my anger and flame.

It seems to be that while I might be a joy and blessing to my family and friends, I am also a huge fucking burden. I flip out and I try to move on and I push myself and I ruin things. I ruin family vacations. I am a huge fucking burden. And it seems everyone is tired of me. Me, you, them. It has been a really long 6 years since cancer. And it has fucking sucked. And while it sucked before that, nothing has reallly sucked as badly as the post-cancer years.

And I am never going to get over this. I can only move toward acceptance, but that's hard to think of when you're in the shit, just hoping to avoid a prolonged hosptial stay with a dying elderly woman as your roommate.

This is never going to change, this having of the diseases. They are with me until death. And in moments like this, I cling to the idea that death could be soon. That my suffering will be abolished, and I will devastate and relieve you all with my absence. Some days I think of others who have died, who have died with grace and beauty, and think I am not like them. I am angry. I am messy. I throw up a lot. I am always running a fever or a sinus infection. I hurt and It is not fucking pretty. I am an asshole. I am amazing when I'm not, though. But I am still a shitty person sometimes, just as everyone is a shitty person sometimes.

And that's OK.

This was another setback in my year of healing. I was so good in California, though. I wasn't perfect but I was better. 

So. Here's to the summer being more like my month in LA than this past hellish week.

Thank you for being here. Thank you for allowing me to be honest. Thanks for reading my unedited rambling.

I love you all, for who you are, for how self-aware you are, for your tips and your silence, for your acceptance and encouragement.

Thank you.

california

Two years ago today, I shot this on my iPhone. It was the night before I left Los Angeles. I was sure I'd be back in September, after Kristie had given birth. But then I fell in love. And I stayed. I went back for weeks at a time, each leaving me wishing I could be back for longer.

But the undeniable truth was that my health was bad, and I let  myself be trapped by it. For two years, I traveled and recuperated and engaged in meaningful relationships. I watched Sadie come into the world and I had my heart broken. For two years, I have longed to come back.

I leave LA on Tuesday. I have been here for three weeks and on the road for four. It's the longest I've ever been away from Sadie, and I miss her. The first week away from her, I cried because I missed her so much. I was homesick for my bed, my dog. Every time I had a sore or fever, I wished to be home.

I haven't been healed out here. I'm eating better, so my diabetes seems a little bit more under control. But I can still dose correctly and eat salads and my number will be 300. It's okay, though. I'm pushing through. I don't seem to do that anywhere else.

The sun is relentless. Today is the first cloudy day in weeks and I see how the weather affects us, how of changes our moods, how it makes my knees swell.

I could've booked a one way, and I almost did. But I intend to return. I will, in late August. As the summer begins to set in New Jersey, I will chase it all the way back to Los Angeles.

I don't know what I'm doing, exactly. But this feels right for now. And all I can really do is to hold that feeling close to me, examine it, and let it lead me to where I need to be.

In Memoriam: My Appendix, Five Years Gone

Five years ago, I lost my appendix and spent a week at Bellevue. In honor of this solemn occasion, I shall report the extremely culturally insensitive writings that 23 year old Kelly wrote below.

Please, hold your appendices a little tighter tonight.

-

I'm BA-ACK!!

You may/may not have heard that my appendix decided to commit suicide and rupture in my precious body.It all started last Monday. I was here at my office on West 22nd st when I started to feel...a bit off. My mind flashed to the day before, which was Mother's Day. "Hmm, what did I eat...what did Kelly eat yesterday?" Many, many things came to mind as I had decided that Mother's Day was my last full day of eating before my crash diet began on Monday. Cold cuts, Peppermint Patties, tuna, Sour Patch kids, old Passover candy I forgot I had bought...the list was long. I tried to stick it out at work for as long as possible, but when I started vomiting in the company restroom, I resigned myself to using a precious sick day. I headed outside where I promptly hailed a cab, hurled in a cab, and was questioned about the possibility of my having swine flu from the driver.

On Tuesday the decision was made to go to the ER. Mother came up to "Spanish Harlem" (or what she calls my Brooklyn enclave. Clearly not Harlem.) and took me to the ER. I had spoken with my doc from NYU. She advised me to head quickly to their famed emergency room. I googled "NYU ER", wrote down the first address that I saw and hightailed it to the east side of Manhattan, clutching a tupperware for puke the whole way.

We pulled up to Bellevue-NYU Hospital. In my drug-addled, dehydrated, hallucinating state, I didn't connect the name Bellevue to the notorious hospital that it was. Big mistake. Once there, I was directed to the pediatrics ER, even as I argued that I was an adult. ("I'm a grown up! A real girl!") But apparently the peds ER is also for "young adults" up to the age of 25. And thank God for that! The scary "adult" ER held all sorts of committed Bellevue prisoners, who were defecating on themselves and slurring at me. After a few hours, I went for a CAT scan down the hall and couldn't help but notice the scan room was right next to the New York City Department of Corrections. They brought a prisoner out and I got so excited. Just like on Law and Order! The prisoner even yelled at me and said "you'll be seeing me on the fucking news tonight." I made a mental note to tune in. He also kept checking out my mom, which made me jealous because I am insane.

To my great dismay, I wasn't able to tune in as it was decided that I indeed had appendicitis. And I spent the next four hours waiting to be taken to surgery. (Apparently gunshots and life-crushing tumors are more important than my suicidal organ.) Right after surgery, I woke up to an extremely high fever and alarms going off. My appendix had actually ruptured and I was in really sick. All I could think was "don't die: you get so many presents in the hospital." This is what I hold on for, people.

After they popped old appy out, I spent the next 6 days in the hospital. I ate Jell-O, accumulated numerous brusies from repeated injections, and learned Bengali from my neighbor (apparently screaming AH-EYYYY! means Get me out of here, I'm dying).

One morning I woke up and a woman in a Saree was staring over my body, attempting to extricate my Blackberry from my cold, dead hands. Now, I didn't really have a TV (It was from circa 1973, and I believe it was the first TV ever created. It also barely worked and you had to pay $5 a day to use it. I love Bellevue.) and my Blackberry was my lifeline. This woman, who I presume was the daughter of my Bangladesh bunkmate, mumbled in incoherently that her phone was broken and she thought she could just "take" mine. Now I'm sorry. But it was the only way I could check Twitter and reasure my tens of followers I was alive. I told her to take a hike and ask the nurse. I would have felt bad, but her mother was a real faker. Crying that much over kidney stones? I've had them. I've seen worse. Grow a pair, Bangla!

Fortunately she was dismissed from the hospital on Saturday, and I was finally allowed to leave on Sunday morning after a week of fevers and way gross stomach stuff. My dad claims that I hallucinated this in my fog of Morphine (I. love. drugs.) but I swear one asked me for a cigarette to sell. I know how things work in prison! I've read the memoirs!

All in all, staying in the hospital pretty much blows. I don't know where I got the romantic idea in my head that it'd be "fun" to stay in the hospital for a few days. It's no Club Med. Sure, I got to miss work. But they woke me up at 6 am anyway to poke at my belly. They also served really questionable food. Their "gourmet" dinner was fake eggplant parm, half cooked noodles, and some green substance that my mother called spinach. I'd have sooner ate one of Bangla's beads (which looked like they were made of pasta. Or her kidney stones.). 

But I had tons of nice visitors who appropriately enough brought gifts. Gen brought a balloon that said "Get Well Grandpa". This entertained her for her visit. And Brenna brought the best gift of all: laughter. When she came in and nearly fainted/threw up at the sight of my needles, I laughed so hard I almost busted my stitches.

As most things are, my hospital stay was a learning experience for me. Here are some things I learned from this latest go around:

1) Do not invite prisoners into your bed, even if they look like a young Montel Williams.
2) Don't mix NyQuil and ExLax.
3) Hospital gowns really do open at the back. Wear your best underwear at all times.
4) Always shower before going to the ER. It may be your last shower for awhile. (My parents can attest to the scent.)
5) Get a Twitter account and make sure everyone knows you're on your deathbed. You will receive a copious amount of gifts.

Thanks to everyone who called/ sent stuff (I especially enjoyed the Pookie books my aunt and uncle sent. Apparently Pookie is a pig, to which I can only say: fitting.)

Till the next time...

BERGIN OUT.

Walking For Diabetes

BAD BERGIN!

I was diagnosed with type one diabetes last year. I shook it off at first, not really understanding the disease, and mistakingly thinking that like Type 2, I could cure the disease with exercise and diet. I didn't yet know that T1 is autoimmune and like lupus, has no cure. 

But now I know how jarring it is, to poke myself 5-6 times a day and give myself injections in my belly, thighs, and arm, every time I eat. It is much scarier than I imagined! 

On Sunday, I'll be in Seattle, raising money for a cure— not only for myself but for the millions Type1/ juvenile diabetes affects. We will walk through the city, and prove to ourselves and to our friends and family that we are stronger than our disease.

Because no more children should lose their health and innocence to this blood-sucking disease. No child should go to bed afraid that they will lapse into a diabetic coma while they are in a deep sleep. 

It's time I stood up and shook my syringe at it in rage. It's time to realize what a life-changing diagnosis this is for kids and their families, and how badly we need a change.

Thank you for your support.

The House

This house, pictured here, stands on the corner of my parents' street in NJ. It has long been my favorite house in our small coastal town, but lately it's had an odd effect on me. It's my reminder of the dreams I had as a girl, and if they'll ever fully be mine again.

--

I stand here for a minute while the dog sniffs around, and I picture a game of football on the lawn, a tussle of cousins and siblings with grass-stained jeans and Giants jerseys on their backs. I look closer and I see not only my extended family, but a partner and kids of my own in the mix. 

Yes. Three kids, I think, looking up at the tree for a spot for the World's Coolest Fort. Maybe even more than 3. All boys with sturdy, Scottish and Irish and French names. 

And good health for them, and for me too. No durable medical equipment attached to my body, just maybe a kid or two in a sling across my chest. I picture cartwheels and sprinklers and childhood, unfurling across this blank green space.

I stand at this house and I think about this dream, the one I've given up on, the life that I'm certain I do not want.

But there's something about this house, this lawn, that has me thinking of the adventure I'm most afraid to embark on. It has me wondering if I'll ever have the courage to pursue it, and if I really ever can.

Does this house remind me of my girlhood innocence, or does it soften my jaded edges and impulses, the ones that tell me I am too sick for this life, that I belong on the road? Or, maybe, is this house telling me that the dream is still a possibility, and it is one I must pursue?

There is time, I think, as Shea pulls her leash, eager to sniff some new grass. And I need more.

The Bottom

The common rule of thumb is that addicts must hit rock bottom before they begin to recover. 

But my follow up question is this: how hard is the bottom?

And can you keep falling through? Are these rock bottoms actually bottomless?

I am beginning to realize that these statements do not just apply to addicts, but to all of us broken souls.

--

On Monday, I made an appointment to see my rheumatologist. I had not seen him since January, when I was hospitalized for a lupus flare. I lost the prescription he gave me to get labs drawn and I'd been putting off calling him for months. (He can be very harsh and scary, and he yells.)

I kept meaning to reschedule but I never did. I had my reasons, but I should have went because the benefit of going to see him outweighed my apprehensions. I should have went the minute by Medicare coverage kicked in on February first.

But, well, I didn't. And I didn't go for my scans, either. My follow-up cancer scans. Nope, didn't do those. I lost those prescriptions too. 

Instead I traveled a bit and laid in my bed, watching my diabetes worsen and not doing much to stop it. 

Last week my parents begged me to make an appointment with my rheumatologist and to finally get my labs drawn for my diabetes.

And so I called the rheumatologist's office, first thing on Monday. And the receptionist, who I USED TO love, didn't seem happy to hear my voice. She seemed...surprised. And squirrelly.

She told me my doctor had let me go as a patient, for non-compliancy. That I'd blown off too many appointments and that I'd failed to get my labs drawn and that I owed them money from the hospital stay my insurance did not fully cover.

I was shocked. And angry. Angry at this doctor for blowing me off in my time of need. So mad at him for not taking care of me.

The anger lasted a few days. And then I realized that this was a wake up call. The doctor hadn't failed me; I had failed me. I let my fear tie me to the bed. I slept through the days because sunlight reminded me I had things to do, and I could not do them. I couldn't go. I just couldn't.

I was afraid. I was too afraid to live that I didn't dare try to get better. Because every time I try to get better, I seem to get worse. And if I don't try, maybe I won't feel that loss of hope, again and again.

I have felt badly for years. The past two years have been especially brutal. I start new regimes and they last for weeks and then I see that they don't work so I go back to what makes me feel comfortable.

But I got fired this week. By a really well-respected physician who told me I was a liability because I was a danger to myself. Because by failing to follow his instructions, I will get worse, and die, and the blame will fall to him. And he doesn't want or deserve this blame.

If I get sicker, it won't be entirely my fault. I have three (four, if you count cancer) unpredictable disease, two of which are incredibly hard to manage.

But getting fired by the scary doctor who once told me I would not live to 50 scared me. It felt like another rock bottom.

I declared at the beginning of the year that this would be my year of healing. And that was nice for a month or two. But it did not last, because as usual, I went in half-ass and instead of all the way. 

I think I need to take smaller steps if I am going to conquer the depression and apathy that makes living with lupus and Type 1 diabetes so hard. 

I think admitting I have a problem is the first one. (I heard that somewhere...)

Tomorrow, I SWEAR, I will go get my labs drawn. And I will take a walk. And get a new doctor. 

And we will go from there.

(I want to live.)

The #dopeniece Connection

Every week, for a couple of days, I babysit my 19 month old niece Sadie while my younger sister Kristie and my brother-in-law, Clifton, work. We color, read, run around outside, play with the millions of toys I have overspent on, attempt and fail at finger painting, and go to Gymboree.

I have spoken about our bond before, but as she ages, our connection becomes more apparent, more intense, and more joyful. I can sense she sees me as a comfort, and as a friend, a playmate. Sometimes when she sees me walk into a room, she starts laughing, because she knows we're going to be silly together.

I believe that there's certain people on Earth that we are just in sync with, and you know it the first time you meet them. Well, I didn't know it the first time we met, because she was...uh...being born and busy gasping her first breath. And I was busy being grossed out.

But since she was about 9 months old, I have known our connection was different, in a way I can't always articulate. I don't feel like a mother, which is good, because Sadie has the best one you could possibly ask for. (Seriously, watching my sister morph from a grad student to a stay at home mom to a working mom who prioritizes her family and finds such joy in stress...it amazes me daily.)

And while I don't feel like a parent, I know that I am important to her. I think she would miss me if I disappeared or moved away for a long time. I didn't see her for a couple of weeks when I went to Hawaii, and when we reunited, she didn't say a word, just laid on my shoulder and stroked my back. My sister and I both had tears in our eyes.

For all the positive my relationship with my niece brings, I feel guilty about it sometimes, that I'm hogging her and possibly hurting my sister's feelings. But Sadie does not love my sister any less just because she loves me, too. Sadie has two amazing parents and does not need me the way a child needs a parent. She also has caring grandparents and an another kooky aunt and an Uncle Egg. She is loved and looked after by so many.

She gives me a reason to stick around, when every thought in my brain and pain in my body tells me to take myself out.

---

Recently, we moved Sadie into a queen bed with bed railings. My father, the paranoid gem of a man that he is, gets nervous that Sadie will fall out or manage to hurt herself. So, much to my delight, we take our midday nap together. (I know that I am 28 but whatever! i am a professional sick person!) 

After at least six books, I sing to her and watch her eyes close and pop back open as she fights sleep. She really likes to be awake. Naps are for wimps, she thinks. 

Lately, her 'tell' has been finding a piece of me to hold onto as she drifts off. For awhile it was my upper arm fat (thanks, Sades). Sometimes it's her two little fingers around my my earlobe. 

One day last week, it was the tip of my nose and then my eyelid. I moved her sticky little hands off my face, praying I wouldn't wake her.

And I didn't. Instead, in the midst of her sleep, she found a way to curl her fingers around the small of my neck. She had a good hold on me, and her hand stayed there for the next hour as we napped our way into the sunny, sunny afternoon.

When we woke up, she was holding me, snuggled into my chin, her face slowly breaking into a smile.

"What do you want for lunch today?" I asked her.

"Cookies."

Cookies? I'd lasso the moon and cover it in icing for you, kid.