What It's Like When Chronic Illness Is Always Lurking

Jennifer Clare Burke chronicles her struggle with lupus, and the challenge to keep on keepin' on.

By Jennifer Clare Burke
Add Comment Add Comment | Comments: 7 | Posted Sep. 12, 2012

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A doctor came in and immediately decided to admit me. Next came a young resident, her immaculate hair pulled back into a sparkling barrette that glowed even in the dull hospital lighting. She confirmed several of my suspicions: Sometimes the intestines can “fall asleep” after a colonoscopy and need time to come around, which accounted for why food was coming up in its original form. Also, the pre-colonoscopy cleansing regimen had been a one-size-fits-all package—overkill for someone weighing less than 100 pounds.

Now the doctor ordered I be put on Zofran (again), Dilaudid (again), and Pepcid (for nausea and stomach acid control). I was also given Decadron, a corticosteroid, to assist with conquering the migraine and to help my fried adrenal system. Ah, I haven’t explained that part yet: After years of taking daily steroids to treat the lupus, my adrenal glands no longer function normally on their own. Thus, when the body experiences trauma, I need some help. Enter the Decadron.

I’d already had two IVs earlier in the day. By now, my body was dehydrated and no longer cooperating, and it took two nurses four tries to land the latest IV in my right wrist. So it goes as the health dominoes flop one after another.

It didn’t take long before I knew by the feel of it that this IV was turning bad. Pink dots of irritation materialized under my skin—and started moving. The unit nurse pulled the line and called an IV specialist to come try again; meanwhile, my arm started bruising along the vein. I’d had far worse from similar procedures—but this one hurt, so much that I couldn’t use the hand. Brushing my hair ventured into pure Three Stooges territory.

Over the course of the next several hours, the next IV line, in my left wrist, eventually broke into a thick greenish bruise, this one characterized, thankfully, more by pressure than by pain. Meanwhile, the IV specialist expressed concern that the first injury had altered circulation to the right hand. We watched it. I didn’t let her or the unit nurse touch it for a while. Eventually the circulation improved, but not without that scare over how much damage had occurred. That’s chronic, systemic illness in a nutshell: I went in for a basic procedure involving my digestive system, and ended up having to worry about a potentially bad injury to my right hand’s functioning.

There was a period about five years ago when the illness was so bad that I couldn’t work at all for months on end. I knew I couldn’t keep draining my aging parents’ bank accounts—my father was still alive then—no matter what sort of crisis I might be experiencing. So I applied for welfare. It was a painful slap, as much so as the disability itself, for a multiple-degree-holder who’d always been determined to live independently.

Years later, long after my health had more or less stabilized and I was working more than one job simultaneously, I continued carrying the expired welfare card in my wallet as a reminder of how bad things could get—and of the fact that I could rally and get past those times.

In 2010, I taught senior college students in their final semester before graduation. They asked a lot of questions. Questions about writing research papers for other classes, how to write a personal statement, how to behave in interviews and offices, and whether post-grad degrees would ultimately give them security. This last topic led to job talk and money talk—all of which they didn’t realize they were predicating on the idea of having healthy bodies well into the future.

“Look, wait a minute,” I said one day. “Here’s the best way for me to give you something to think about in your financial projections.”

I grabbed my purse from the instructor’s desk and retrieved the food stamps card from my wallet. I covered it. “OK, I’m going to show the class something, and you tell me what it is.” No sooner had I lifted it to their eye level when the shriek of “FOOD STAMPS!” echoed off the institutional fluorescent lights. “Yes. Tell me when I needed them?”

A raised hand. I nodded at the student. “After your degrees,” he said. “Correct. You’re having this money discussion as if everything out there is a sure shot if you just plan well enough, or if the job just comes through. Yes, you should plan—a lot, and very carefully. But there will always be the unexpected, the thing that cuts you at the knees, the thing that derails you and makes you whine about life not being fair. And you’ll have to think now about cultivating the resources as a full adult out of college to get through those times.”

I explained the nature of sickness, the time on food stamps, and the time afterward when I could actually buy better quality food that aided my health without feeling the density of money guilt and even worse money anxiety. I talked about my career decisions in the midst of student debt, caring for a family member with terminal cancer, and getting work that I enjoyed. I didn’t think that disease got me off the hook as long as I could still contribute in some way, and I needed them to know that.

When I later invited an admissions representative from a local school’s postgraduate program to speak in class, students pelted her with financial aid questions and wanted information on the recent graduating class’ loan repayment rate and employment rate. I had given them a practical planning tool to guide their decision-making and to heighten their research efforts: fear.

The hospital released me on Saturday the 14th, once I proved that I could eat chicken like a “normal person.” During the car ride home with the windows down, I welcomed the wind that made my braid swish into my face. My hair smelled like the detergent used on hospital linens.

I might not be able to predict the exact time, location or nature of my next sickie trip, and I don’t have to. It’s enough to know with visceral certainty that it will come.

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COMMENTS

Comments 1 - 7 of 7
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1. ryan said... on Sep 12, 2012 at 10:12AM

“Oh God another woe is me medical sob story on the cover of the PW. This isn't even good writing or make a bigger point it's just a pity party. This paper is terrible anymore, just pull the plug.”

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2. Sue said... on Sep 12, 2012 at 12:24PM

“I think it's important for young people to understand that they simply are not infallible, so I am glad she is giving this kind of reality check to her students.
Sorry to hear that Jennifer has had to deal with such an awful disease. I didn't know before this story just how all-encompassing it can be and how something that seems as simple as a colonoscopy can turn into something a million times more complicated thanks to the lupus.”

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3. Kristin said... on Sep 12, 2012 at 04:10PM

“Ryan, I'm glad you're so healthy that you can cast aside those of us with health problems. Chances are, you've had an extended encounter with one of the 1.5 million people with lupus. Try being a little more empathetic to the those living with serious chronic illnesses.”

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4. Megan said... on Sep 12, 2012 at 05:38PM

“@Ryan, yes, I'm sure the quality of writing can be accurately gauged by someone who thinks "this paper is terrible anymore" is correct. Bravo on saving everyone time.

I was fascinated and horrified by Jennifer's story, and extremely impressed with the attention to all the little details that healthy people don't consider and too often take for granted. Without sounding recursive, systemic disease affects everything. My sympathies and admiration on your strength in the face of this adversity.”

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5. Kman said... on Sep 14, 2012 at 04:29PM

“Once or twice in a lifetime, you come across an artist, an author or a musician that you just completely "get." For me, Jen Burke is one of those artists. Her book is a jewel. After you are done reading her work the world looks much more beautiful, so much more interesting and delightfully silly. A Life Less Convenient is a beautifully written piece of generosity, from a very talented author.”

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6. Brian said... on Sep 20, 2012 at 10:03AM

“Lupus, like almost all health challenges, including MS, HIV, obesity, cancer, heart disease and diabetes, can be reversed by leading a raw vegan lifestyle. This lifestyle enables me to work 100 hours a week with no lulls in mental focus and crisp mental clarity. Find out more at www.Fruit-Powered.com. Arnold's Way of Lansdale, Pa., offers more than 750 YouTube videos on healing from health challenges.”

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7. Doesnt Matter said... on Jan 16, 2013 at 02:14PM

“To Ryan; First off Ryan, let me start off by letting you know that I used to know this auther and have to tell you to this day she is the most amazing person I have ever met. Your ignorance amazes me and all I can ever hope for you is that one day you have the opportunity to meet Jenn in person. I have had an intersting life myself and she makes my struggles look like nothing. She is someone that will always hold a special place in my heart.”

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