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

Monday, May 31, 2010

Guts and Blood



It was now December 28th, and the holidays were still being celebrated in northeast Wisconsin.  All the kids were on Christmas break, and we didn’t have Facebook or cell phones.  So my only visitors were my parents. 

When the nurse told us that I wouldn’t be having any tests done that day, but that we’d wait until the 29th, there wasn’t much to be done.  My insides were cleaned out, I was sucking on ice chips, and no one would be visiting because no one outside the family even knew I was there.

Mom and Dad were antsy.     

I heard them outside the door talking about my Aunt Mickey’s Christmas dinner that night.  My mom’s twin sister is a nun, but she was a great baseball player as a kid, so instead of calling her Sister Elise, we called her Sister Mick or Aunt Mickey, after Mickey Mantle.   My brothers and sisters, along with Mom’s younger brother, Danny, and his wife, would go to Aunt Mickey’s house every year for her Christmas supper.  We’d check out her decorations and the gifts she got from her students while doing our best to be polite. 

Mom was a nun for a few years before she met Dad, and she was still a good Catholic.  The obligation to visit her sister that night was giving her a serious guilt trip.  I could hear her crying and saying, “We can’t just leave her all alone while we go to a party.”

A party?  That’s not what I would call it.

“You guys should go to Aunt Mickey’s,” I said with a yawn.

“Oh, no…”

“Why not?  It’s just me, and I’m just going to watch TV.  We’re not even doing any tests until tomorrow.”

“Do you think you’d be OK?”

“Yeah.  I know how to ask for more ice chips,” I said.

When conversations are brief, and especially when they are in quiet and low tones, it’s extremely difficult for my father to hear or understand them.  So he often finds himself sort of standing behind the discussion, not knowing what’s being decided.

My mom kissed me on the forehead and said they’d see me soon.  Dad smiled at me and waved good-bye as they walked out, about to drive 40 miles to Aunt Mickey's house.  They could have been going to the cafeteria, for all Dad knew.

An hour or two after my parents left, the TV was on, but I wasn’t watching it.  I was so tired, and I started to hurt again.  I hurt so much.  I remember feeling guilty about hitting the red emergency button for the nurses.  I felt like I was bothering them.

“Can I help you?” the little speaker blared.

“Yes.  Can you send a nurse?” I could barely breathe out.

“A nurse?  Why?”

“Please help,” I grunted.

Two nurses quickly came into the room as if they were ballet dancers in orthopedic shoes.  One grabbed a bed pan and the other lightly lifted my head and helped to turn me.  I know I told them I needed to go to the bathroom and that I was in a ton of pain, but I don’t actually remember saying the words.

They were like fairies.  In my memory, their movements were quick, but graceful, and they both smiled.  I know one of them wiped my ass again, but I don’t remember it happening, and I don’t remember being grossed out with the situation or grossed out at my own body. 

I was so drowsy that I didn’t realize how much liquid was coming out of my body.  Over and over, the two nurses would turn me on my side, give me the same soft instructions, and place a bed pan under me, only to remove it a few minutes later.

The nurse with the curly light brown hair came back into the room.  It was dark, and my TV wasn’t on.  It felt like midnight.  It was only around 8 or 9. 

“Mary,” she whispered.

I opened my eyes, but I couldn’t say anything.  I was too exhausted.

“Mary, you’ve lost some more blood, hon,” the pretty nurse said as she placed her hand on my arm.

She told me I needed to have a blood transfusion.  She said I needed my parents’ permission because I wasn’t an adult yet.  I was in a daze.  She wasn't making sense.

“How much blood did I lose?” I asked.

“We’re not quite sure,” she said. 

“How much blood are you giving me?”

“Each transfusion will give you about a pint of blood, and the doctor has ordered at least a few pints.”

I didn’t realize my body should have about nine pints of blood flowing through it.  If I had, I would also have realized I lost about half my blood supply.

“Am I going to die or something?” I didn’t really think I was going to die.

“We just need to get your blood levels way up if we’re going to get those tests done,” she said confidently, not telling me that yes, I could die without the blood.

Another nurse, a little older, but still full of energy, walked in and said, “Mary, we’ve tried a few phone numbers.  Do you have any idea where your parents might be?  We need to get their permission over the phone before we give you any blood.”

I sort of shrugged as I closed my eyes.  I just wanted to sleep.

She put her hand on my arm and said, “Mary, this is serious.  It’s important we talk to them.”

I remember becoming angry in my confused state.  I did tell my parents to leave, but I wanted them to fight for me.  Their teenage daughter lost all kinds of blood, had to take harsh laxatives all day, couldn’t enjoy a minute of her Christmas break, and was most of all… lonely. 

And they were off having some dumb noodle and cheese and corn casserole with sugar cookies and chocolates, admiring some dumb green and red artsy craftsy thing on the wall or a new afghan that someone from the convent had knitted. 

They should have known better than to leave me.  But why would they?  I was the first of their seven kids to ever stay in the hospital.  They were learning how all of this worked, too. 

It was difficult to grasp.  For the first time in my life, my parents disappointed me.  For the first time, they didn’t have the answers.  For the first time, I had to start taking some responsibility for what was happening to me. 



I was just a kid when I arrived at that hospital, but in one moment I became an adult.
Everybody was listed in the phone book then, so it wasn’t long before a red bag hung next to me, and someone else’s blood was slowly pumped into me.

Having just given blood a few weeks ago, I understood I wasn’t at risk for contracting a disease or getting HIV.   Even if I was concerned, I was too light-headed to care.  I just wanted to sleep, but the nurses insisted on waking me up every ten minutes.  I figured they didn’t want me to fade into a coma or something, but I just wanted to sleep so badly.

Of everything I could have been feeling, I was actually annoyed while two women were doing their best to save my life. 

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