I was diagnosed with Crohn's Disease in 1994. Along the way, I learned how to deal with this disease- I'm fluent in doctor speak, there's no drama in my ER visits, and I can laugh at just about everything. And along the way, I learned how to stop fighting through the tests, the pain and the surgeries (to remove portions of my ileum).

I learned how to live.

I like my life, and I'm not so sure I'd be here if it weren't for Crohn's and everything that's come with it. So I'm inviting you into my life. I hope my experiences, the hilarious and the horrendous, can give some perspective on a patient, a daughter, a wife and a happy woman.

This isn't just about me. I've got some suggestions for your next doctor or hospital visit at the bottom of the page.

Nate and Me

Nate and Me
My husband and biggest fan is always by my side

Friday, May 21, 2010

In the Beginning, Part IV

I woke another three or four hours later. My stomach hurt again. I just held on and quietly grunted to myself. If I wanted to go to the doctor, I had to get out of bed and find my parents. I made it out to the kitchen hunched over. My brother, Joe, made some mean remark about how I deserved it for making him do dishes. Steph and Lizzie both asked me what was wrong. I was crying and I asked where Mom and Dad were. I quietly asked them to get one of them.

From the basement I hear, “What the hell does she want? Well tell her to go back to bed or take some Kaopektate.” The next words I hear are in synch with the forceful stomping of her shoes up the stairs. “I have to stop everything because MARY SUE has a tummy ache! The world revolves around MARY SUE!”

Mom came into the kitchen and shot me a look that said I better not be faking or else… I was crying and told her how much pain I was in and that I puked all night.

“Get dressed,” she said. “Your father will be home any minute and he can take you to the goddamn doctor.”

I quietly said, “I think it’s serious.”

She said, “I’m sure it is.”

Trying to dress myself was agony. I got my pants on and then a sweater or sweatshirt. I don’t remember too much, but I remember that my thinking seemed very foggy. I was in a daze. I walked out into the wintery cold air where my dad was waiting in the front seat of his green Plymouth Acclaim. He pulled out of the driveway without saying anything. I was crying. I yelled for him to pull over after we passed three houses and started to turn the corner.

“What?”

“Pull the fuck over!!” I screamed. I opened the door while the car was still slowing down and threw up in the street. I didn’t get any on myself. I checked again and looked at Dad. I gave him a thumbs up, and we were on our way again.

I think that was when he realized I had been going through hell and that this was a pretty big deal. I threw up once more before we made it to the doctor’s office. The doctor, not the emergency room. We checked in at the counter and I told the receptionist that I needed a wheelchair. She didn’t pay any attention. “You can sit in one of those chairs, miss.”

She turned around in her very stylish outfit and overpowering perfume. I called out to my dad, but he couldn’t hear me. I started to feel my knees buckle. I held on to the fake wood and Formica counter like I was trying to bust it loose.

“DAD! GODDAMN IT!”

Pops sprung like he’d been shocked on both butt cheeks at the same time. He ran to me and got just a few fingers on my left arm before I fell.

I woke up in a weird room. It was an old exam room, but it had a bunch of equipment in it. I was laid out on a hospital bed that had come straight from a 1950s sanitarium. My dad was pacing and the door was open. The lights were turned off. A nice woman with smooth skin told me quietly, “We’re going to send you to the hospital where they can take better care of you.”

I didn’t care what was going to happen. I just wanted that pain out of me. I just wanted to be OK. It was strange. A few people helped me into a wheelchair. My dad looked like he had never seen a wheelchair before. I think he was just scared. He pulled the car around to a back door exit. And weirdly, he waited in the car for the medical staff to put me in the car. It was like it was the first time anyone helped someone get out of a wheelchair and into a car.

We finally drove across the street to Emergency at St. Mary’s Hospital and where people were expecting us. I remember a few guys, maybe a woman, all coming toward the car.
“Don’t get up! Let us help you!” The next thing I remember was my dad walking quickly next to me as I was being wheeled through a lobby. I got a flash of the glazed look in his eyes before my head dropped and I passed out. None of his seven children had ever been seriously ill before. Knowing my dad, he was probably running the events of the last day or two through his mind, trying to figure out when I became so sick.

The next thing I remember was waking up in a room with little primary colored patterns bordering it. There were teddy bears and balloons on wallpaper and on the cabinet doors. Where the hell was I? A nice nurse came in and said, “Oh, you’re awake!” It was a surprise to my dad, too. The nurse put a needle in me to take some blood to be tested. It didn’t hurt as much as it did when I gave blood a few weeks ago, so I didn’t cry or anything. A few minutes later, another nurse, again, all smiles, came to put in my IV bag. The doctor thought it would be best.

I had no idea what IV fluids were. I only knew them from seeing them in hospitals on TV. It was just a big bag of saline solution. It’s what most people use on their contact lenses. It was going straight into my veins to rehydrate me. After losing all kinds of fluids through both ends of my body, I needed to get rehydrated. It was one way to keep me from feeling so faint.

It took close to a full day, but I remember feeling relieved that somebody believed me. Sure, I was glad to be getting medical attention, but I was just so damn thrilled someone was taking this seriously. Who knew this would be a running theme for several more years?

I realized that because I wouldn’t be 18 for one month, I was in Pediatrics, where the nurses are sweet, but the babies and kids scream and cry all the time. Still, I finally felt calm. I had no idea what was happening to me, but I didn’t feel so upset. Even with needles and bags and blood tests… I felt OK. We were trying to find an answer.

The sheets were scratchy and they smelled kind of bleachy. I put my fingers through my oily hair.

“I didn’t shower today!” I nervously thought. That meant I hadn’t shaved my underarms… or my legs. How embarrassing!

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