A Laundry List (or Two.)

posted in: Day In The Life, Luv, Sicky, Tips 10
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Oh, to have a staff.
Free label, letters by me. Oh, to have a full-time graphic designer on staff. Or a staff!

I saw a woman wearing denim overalls today.

Though I would like to write about how every few years the public must endure Fashion’s attempts to make denim overalls cool (oh, how they try and fail!) and how this is just silly and I can’t believe we haven’t learned to ignore Fashion on this, I think that ought to wait till tomorrow. To go straight from talk of ambulances and surgeries to ill-fitting overalls is not nice. It’s like going from a popsicle to a steak. Jarring. Rude, in some cultures.

And so as I went about my day today, I tried to think of a good bridge. “I could write about what I’ve learned since getting sick,” I thought, and mentally wandered down that road. But on the way I came upon all the things that I feel more confused about, and things that I observed that didn’t necessarily teach me anything so much as simply surprised me.

So tonight, a few lists; tomorrow, overalls.

My Oprah Winfrey, “What I Know For Sure” List
– The saying, “What doesn’t kill you makes you stronger” is bizarre and largely untrue. More often, what doesn’t kill you leaves you weakened, compromised.
–  You can get used to anything.
– There is no time. You must do it now.
– Being in a hospital blows. Stay out if you can, but if you must go in, pack a bag. Take your phone charger, your sock monkey, your journal. Take your glasses (if you wear them), your laptop (if you use one) and anything else you would want if you have to be there for long. As bad as you feel, try, try, try to pack a bag from home to take with you. It will bring you great comfort when you wake up.
– Visiting people when they’re in the hospital is one of the kindest, nicest, most lovely things you can do for a person. I remember every last person who came to see me. Thank you. It meant everything, every time, bless your hearts forever and ever. (Rebecca, if you’re reading this, I’m looking at you right now especially. You too, Bilal.)

Curiosities
– I’ve seen myself from the inside out: I have handled my own intestines. I am kind of a badass.
– Very few people in the Eastern hemisphere get UC or Crohn’s. These are maladies of the industrialized West. One day we will know why and keep people from getting sick like this.
– Losing my hair really sucked. It came out in clumps in the shower. That was one of the worst times in terms of feeling attractive (or not.) The stoma was rough; in some ways, losing my hair was harder. A female thing?

Disappointments
– In a hospital in Tucson, AZ, in ’09 or ’10 (ER trip while visiting then-husband) I looked at my frail, perforated body and all the medicine bags hanging around my head and thought, “I will never, ever hate my body again or tell myself I should lose five pounds when I don’t need to.” But I still do that.
– You can’t go back. You can never be ten years old again, happy, healthy, running through the yard in bare feet.

Funny Things
– I have my very own semi-colon.

“What’s Up, Doc?”

posted in: Day In The Life, Sicky 22
You're fine.
You’re fine.

Moving to a new city means finding a new salon, a new grocery store, a new bank branch. For me, it also means finding new doctors. On my shopping list: GI, OB-GYN, primary care, anesthesiologist, and possibly a colorectal surgeon, but I was crossing my fingers that last one could wait. Looks like not.

It’s not that I want to have all these doctors. I’d like to have zero doctors (no offense to any physicians out there) but that’s not realistic for me. My case file is the size of an oak tree stump: I need people with stethoscopes in my life. And so I did some hunting and found a primary care doc I like and he has so far made good referrals to me.

On Wednesday, I saw my new GI. It was my second visit. He was wearing a bow-tie this time. If he had been wearing a bow-tie on my first visit as well, I might not like him as much as I do. But he is a man who clearly varies his bold neck-tie choices; this causes me to put more confidence into him as a physician. Sure, it’s solid reasoning.

Dr. L. is concerned about me. I’ve got some issues that aren’t going away since my last surgery in 2011. Sometimes they hang out off in the distance, sometimes they creep into the frame and cause real trouble, sometimes they come in and kill everything.

“Have you ever considered…” Dr. L. paused, and set down his pen. What he was about to say required full eye-contact.

“Have you ever considered going back to the ostomy?” he asked. He paused. “Choosing a permanent ostomy, I mean?”

I didn’t say anything. “Choosing” is not a word that has come into play much in the years since I was diagnosed with ulcerative colitis. Not in doctor’s offices.

“The troubles you have, they would go away with a permanent ostomy,” Dr. L. said. “It’s a big decision, I realize that. But…” I was staring at my feet. My feet were dirty because I live in New York City now and New York City is filthy and I was wearing sandals. My feet looked cute and filthy. I thought about how my sister and her fiance Jack went to Tokyo for New Year’s and Rebecca told me all about how in Tokyo, there are no garbage cans. Everyone packs their trash in little bags and throws everything away at home. Toyko compared to New York!

“I’m not sure I’m ready for…” I trailed off. “I don’t know.” My voice was a croak. The ostomy. Permanent. I thought I was done.

My throat felt tight and hot. Though my body is often weak and I live an inconvenient, painful, and senseless physical existence (as it relates to my guts) 80% of the time, the one thing I have going for me is that there is not, presently, a bag affixed to my abdomen that catches excrement that oozes out of a pulled-out piece of my intestine. I did have one of those bags and one of those pulled-out pieces of intestine for about three years, in total. Not great.

But what I deal with now is also not so great.

“Do you think,” asked Dr. L., “That your partner would be okay with something like that? Do you think he would be…understanding?”

My heart clenched. An inward moan. Yuri.

“I don’t know. I’m not quite ready for that, Doc,” I said. No crying, no crying. “He’d be wonderful, sure, but… I’m just not. He’s younger, you know, and I just, ah…” Tears were forming and I needed to stop the conversation immediately. “I’ll think about it.”

“Okay,” said Dr. L. with a kind smile. “I’d like you to see a colorectal surgeon about a treatment we can do for you in the meantime.” He then explained the treatment, and I was glad he did because it’s so awful, it got my mind off the ostomy. I could instead be horrified by what the surgeon will do to me (for me?) in a few week’s time. Much easier to focus on that and my filthy feet.

“Thanks, Doc,” I said, and got the surgeon’s name and number. “I like your bow-tie, by the way.”

“Thank you,” the doctor said, and went out the door. I hopped off the exam table, removed my paper gown, and got dressed to go back out into the city.

I Spent The Night in the Bellevue Emergency Room.

Before neon.
Pre-neon.

Saturday night, my body refused to be told what to do any longer; I was forced to visit to the emergency room. I ended up at historic Bellevue Hospital’s ER from about 1am till daybreak. This is my tale.

Earlier in the day, I had found it difficult to walk. My guts were churning toxic waste and my tummy hurt a lot. My bathroom trips were numbering in the ridonkulous. I rallied enough to make dinner for Yuri and myself, but I ate very little. When every morsel you put into your body winds up a punishment, you’re don’t get too hungry. I was weak and sad. We went to bed. I woke an hour or so later and, like a wounded/dying animal, I left the bed to try and curl up with my pain alone on the couch. I found no relief there, so I scraped myself up and went to deliver the bad news:

“Yuri,” I said. “I need to go to the hospital.”

Yuri bolted upright and mobilized quickly. I made sure he packed his laptop and brought anything else he’d like to have for the next 6-8 hours. I’ve done middle-of-the-night hospital trips plenty of times; he hasn’t.

I knew from riding the subway that Beth Israel Medical Center was on 1st Ave. and 16th. (There’s a tiled sign in the subway that says, “Beth Israel, 1st Ave. & 16th”.) We’re staying just down the street, so it was okay that when we went outside we couldn’t get a cab. I shuffled along the sidewalk as Yuri tried to hail one, but I knew he’d fail. Saturday night in the East Village means taxis, taxis, everywhere, and not a ride to catch. The cabs are full of nightlife already; nothing is available. And since the East Village in way down on the island and 1st Ave. is a one-way going uptown, you’re pretty much out of luck unless you catch someone coming out of a taxi and you slip in before it leaves again. We reached Beth Israel-Mount Sinai in about 15 minutes on foot.

When we found it, though, it appeared to be closed. Like, closed-closed. We went to two different doors. I know it sounds crazy, and a New Yorker might scoff at me that I didn’t “just go around” or something, but I’m telling you, that hospital was not open. Doors locked. No people. At this point, I was kind of hunching over, too, so if there was an arrow someplace, I missed it. A taxi driver was passing slowly and we caught him.

“Is this hospital open?” I asked at the window.

“Uh…” The driver wasn’t sure what I was asking. Or maybe I just looked that scary.

“Do you know if it’s open?” I asked again, and then, seeing there was no one in the backseat, I opened the door and asked a way better question: “Can you take me to the nearest hospital, please?” Yuri jumped in and we were off, headed to the other nearest hospital, which was at 1st and 27th St.

Bellevue.

Bellevue is the oldest public hospital in the country. Since 1736, the sick, maimed, crazy, indigent, burned, frozen, dying, pregnant, drunk, beaten, wounded, frightened, blitzed, and otherwise in-jeopardy humans of New York have made their way to Bellevue for help. The first-ever maternity ward? Bellevue. The first-ever ambulance service? Bellevue. But despite all that, despite the millions (counted and uncounted) who have received care at Bellevue over the centuries, despite being a landmark of American innovation and civilization, Bellevue’s reputation is not so great. This is probably because of the psych ward.

In New York City, everything is extreme. The poor are really poor, the rich are really rich. The food is really, really good; the garbage smells really, really bad. And the crazy people — sorry, the mentally ill people — are really, really nuts. Bellevue is where they go. And throughout the hospital’s history, tales of terror from the halls of Bellevue have kept Americans in thrall; suicidal starlets, frothing lunatics, axe-murderers, giggling perverts — they all end up in Bellevue. Add to that the occasional (and sorrowful) stories of mistreatment and abuse inside the ward and you get a place frequently referred to zero-to-little irony as “the hellhole” or “bedlam.” I was vaguely aware of this history as I entered the ER. I wasn’t going into the psych ward, but the buildings aren’t too far apart.

I was admitted quickly. It seemed quiet in there. I was hunched over in my chair while the triage nurse put the bracelet around my wrist and felt a surge of excitement push past my pain. I was going to get the inside scoop on a New York City emergency room on a Saturday night! This was gonna be great.

It might’ve been great, relatively speaking, except that I was injected with morphine and I am allergic to morphine. It wasn’t Bellevue’s fault; it’s been so long since I’ve even heard that drug suggested to me that I neglected to mention that I have a terrible, terrible reaction to it. When they asked me if I had allergies, I said no; I’m used to being treated frequently in hospitals that know me, and I was feeling so sick I didn’t think to mention, “Oh, yeah. A long time ago, morphine nearly killed me.” So when I was writhing in pain on my sickbed, the very capable and kind internist said, “I’m going to give you an injection; we’ll get an IV going soon,” I spluttered, “Yes, thank you,” and zip! There you go, morphine in my arm.

It’s a sad thing indeed to be injected with something you’re allergic to.

I wouldn’t feel that allergy/reaction immediately. All I felt was drowsy and in less pain, and that was okay for the moment. Yuri got a chair and sat near me. We heard people talking on the other side of the curtain to my left and tried to listen in on what they were saying. Our eyes grew wide as we realized…the guy got stabbed! We had a stab wound victim in the bed next to us! Holy crap! There was blood on the curtain, too! Wow! Then there were cops! Five cops! All grilling the guy about the stab wound! So far, New York City emergency room report = excellent!

From there, though, the Bellevue ER took off and I went down. It was nuts. I passed out and woke up, hella nauseated, to two Jersey girls screeching next to me; one had twisted her ankle and the other was furiously yelling into her cell phone. They were both roaring drunk. On my way to the bathroom, I passed four indigent men passed out on beds in the hallway; each of their pants were 90% off. When I got to the bathroom, I couldn’t use it. It was filthy. Fecal matter was sprayed around the back of the toilet. There was blood, dried and fresh, kinda everywhere. I turned on my morphine-woozy heels and Yuri helped me back to bed. I stepped around other gurneys and sick people and caught the nurse.

“The bathroom… It’s… I can’t use it,” I said, reeling.

“Oh, yeah. That’s why I hold my urine for twelve hours,” he said. “There’s another bathroom, though,” and he told us where to go. I don’t remember if I used it or not. By that point, I was quickly succumbing to my morphine problem. I don’t remember being released. I don’t remember getting home. I slept the entire day on Sunday and today was mostly lost.

Bellevue, you didn’t do me wrong. But I still ain’t right.