Backpacking Part 4: The Monkeywrench

When you’re immunosuppressed, there’s no telling what minor ailment might turn catastrophic. The week before our backpacking trip—a trip I’d been planning for over a year—a tiny, pinprick blemish would threaten to derail all my plans.

My year of planning had revolved around the complexities of ulcerative colitis, my illness. But UC was the reason I was also taking immunosuppressive meds, and even after all my efforts, going backpacking with my immunosuppression was not guaranteed to work out.

The problem started as a zit. At least, I thought it was a zit. Doctors would later disagree with each other about this. One doctor guessed it had been a “subdermal infection” that I had mistaken for a zit. Another thought it was a zit that later became infected.

But at first, it looked like a zit. Or what I could see of it did. I peered at it in the mirror, tilting my chin up and straining to see it out of the bottoms of my eyes. It was red and painful, and when one Sunday evening I thought I could see a small whitehead, I carefully tried to pop it to relieve the pain.

This was a mistake.

The zit, or infection, or whatever it was, got worse. Much worse. Immunosuppression means that the body can’t fight ordinary infections very easily, so any tiny infection can turn into a big one. Within days, the wound had become far more painful and swollen and red. When I touched it, I felt a hard, grape-sized lump under my skin.

I hoped it would go away on its own. In several days Ron and I would leave for backpacking, and there was still a lot to do. We had some food to buy, we still had to pack, and we needed to plan our route through the Wallowa Mountains. 

Our planning had already been affected by other unexpected health issues. There were almost too many of them to keep track of.

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An Endless List Of Ailments

A few months earlier, in May, I had developed severe dry eye. This is a chronic, incurable malady that was the latest addition to my catalog of autoimmune disorders. My immunosuppressive meds were mainly to treat UC, but other, more minor ailments existed in various parts of my body. My overactive immune system frequently found new tissues to attack. Now my meibomian glands had spontaneously become inflamed.

Meibomian glands are the tiny eyelid glands that produce the oil that keeps our tears from evaporating. My swollen glands could no longer release their oil. In recent months, my eyes burned constantly with dryness. I had been forced to switch from contacts to glasses and to carry eye drops with me everywhere to relieve the pain.

I also had a mysterious, persistent sore throat and inflamed gums. These symptoms had developed this summer. They caused my optometrist to recommend I be checked for Sjogren’s syndrome, an ailment I’d never heard of. He explained that it is another serious autoimmune disease.

Then he casually mentioned that a small percent of Sjogren’s patients also develop lymphoma. I was already at risk for lymphoma due to my immunosuppressive meds, and the comment sent me into a tailspin of tearful anxiety.

On Monday, the day after I tried to pop the “zit,” I saw a rheumatologist about Sjogren’s testing. She prescribed blood tests and recommended I also see an ophthalmologist for my dry eye. I dutifully got my blood drawn at her lab, then spent time finding an ophthalmology clinic that was covered by my insurance. I made an appointment.

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Those still weren’t all my recent health problems—my colitis symptoms had worsened in the last week. My stools had loosened, and one day a stab of pain appeared in the left side of my colon. I hadn’t felt that old, telltale gut pain for three months. It made me anxious.

I wanted to be strong and healthy going into backpacking, because I would need to go off sauerkraut and kefir for several days during the trip. Those were my “medicine foods.” I only felt comfortable going off them if my gut was already stable, which meant that I urgently needed to stabilize things in the next week. 

I’d been racking my brain about what might have caused the change in my symptoms, but what I most needed was to sit down with the health chart where I recorded my daily symptoms and diet in detail. The rheumatologist, ophthalmology appointment, and trip planning had all delayed that process.

I felt myself to be swimming in a sea of new ailments. It felt dizzying. 

To top off my concerns, Wednesday would be my fortieth birthday. I’d be celebrating with friends in a few weeks, but this week I was coordinating a get-together with my family on Friday. I also hoped to do something special with Ron on the big day itself.

All of this left me little time to think about the strange new swollen lump on my neck. 

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Please, Don’t Give Me Antibiotics…

On Tuesday I awoke in pain. The wound, or zit, or whatever it was, was itchy and throbbing. It had worsened and was clearly not subsiding on its own. I could see and feel its red tentacles beginning to extend outward from its center, down my neck and up into my jaw. What little I knew of infections told me that that was very bad. It needed to be drained immediately.

I went to an urgent care clinic, where I waited perhaps an hour to be seen. I was still more frustrated than worried. Ron was doing our final trip shopping on his own this morning, and I spent much of the hour texting with him about what we needed.

The urgent care doctor was a tall, brusque older woman. She led me to a small side room off the lobby and peered at my neck, frowning. 

“I’ll have to drain it.” She looked displeased. “Be back in a few minutes—I need to get my equipment. You’ll need oral antibiotics. I’ll write you a prescription before you leave.” She strode out of the room.

Sitting there alone, I felt strangely numb and distant. For some reason, in the course of the last few seconds, a fog had descended over my mind. My skin was prickling all over my body, little goosebumps rising on my forearms. My breathing had gone shallow. My hands looked strange and limp in my lap, and now they began to quake.

Through the fog, I tried to understand what was happening. Then I heard the doctor’s words echo in my mind:

You’ll need oral antibiotics.

I sucked in my breath. My body had responded to these words before they’d fully registered in my mind, but now they did.

The last time I had taken antibiotics, they’d wiped out my gut bacteria and I’d gotten a C. diff infection. I’d spent a summer racked with pain, had been hospitalized for a month, and had been told my life was in danger. 

C. diff is more common when you have ulcerative colitis. Now that I’d had it once, I was at even greater risk for getting it again.

Antibiotics were what had triggered that crisis of two years earlier. It was a crisis from which I was still recovering. This month’s backpacking trip was supposed to signal my triumph over that crisis. But now, because of this little wound on my neck, instead of backpacking next week I might find myself in the hospital again. I might be wading into the midst of another nightmare.

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The brusque doctor returned carrying a tray of sharp-looking implements and needles. But those sharp implements were not what was making my breath thready and my heart pound in my ears.

Trying to sound calm, I explained my fear. Eyes pleading with her, I asked, “Is there any way I could avoid antibiotics?”

Glancing at me from where she was organizing her tray, she said, “You can wait two days to go on them, so you can at least see which ones you need to take. I’m going to take a culture of the swab from the drainage. It’ll take two days to get the results from the lab. Then we’ll know what’s in the infection.”

This didn’t ease my worry. Two days from now was Thursday. Three days later, we were supposed to leave for our trip into the wilderness. 

And more urgently, I felt a cloying, visceral, maniacal fear of returning to the hospital and the world of pain.

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Coming Up With A Plan

I lay on the examination table and gritted my teeth while the doctor numbed my neck with a series of novocaine injections. When you already have a sore that’s painful to the touch, piercing it with a needle is agony. After a few minutes, she poked the sore with her finger and asked if I could feel it. When I said yes, I had to suffer through another couple of injections.

At last, numbness settled in. Even though the novocaine had been injected into my neck, it felt strangely familiar, as though I could somehow recognize its flavor from past dental work.

The doctor set about prodding and slicing the wound. To my great relief, this didn’t hurt because of the numbness. What did still hurt was the pressure: for twenty or thirty minutes, she pressed the wound hard and slow from various angles. Sometimes she leaned into it with her body, asking me to brace against it with my head and jaw. I could feel her fingers bruising me, but agreed that this was necessary—we needed to get as much pus out as possible. I struggled to breathe through the pain and not wince away.

Despite this new pain, as soon as she had opened the wound I had felt relief. The body knows when an infection needs to be drained. I could feel my body’s gratitude for the ability to finally expel its built-up toxins.

As soon as I returned to my car after checking out, I called my doctor’s office. Lying on the table pressing into the pain, I had come up with a plan: I would get a second opinion. I wanted to talk to someone who knew my health history and cared about my fears. My regular doctor wasn’t available, but another doctor in the same office had an opening that afternoon. I booked it.

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Exhausted, I drove myself home. But my work wasn’t done—midday, I spent two hours poring over my health chart. My loosening stools were, after all, just as urgent a problem as the neck wound.

To my frustration, I couldn’t find a pattern except that the loose stools had occurred a week or two after I’d switched the brand of my daily sauerkraut. A few days ago I had switched back, just to be safe. My stools had begun to firm up again in just the last day or two, perhaps responding to the change to my usual probiotic bacteria. Maybe I was out of the woods. I hoped so.

It also occurred to me that my neck wound had arisen around the same time as my loose stools. I wondered if the change in my gut bacteria had affected my whole immune system. Autoimmunity works in mysterious ways. Everything is connected, and you never quite know where the next ailment will manifest.

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Let’s Treat This Wound The Old-Fashioned Way

In the afternoon I saw Dr. D, a short, bright-eyed man. He ambled into his office with a lopsided gait—he seemed to have some condition that made him look and move a bit differently. His office had a wooden desk next to the examination table, and on the desk were framed pictures of Dr. D with his beautiful family. The pictures faced me and not him.

It was a touch that humanized both himself and the room. In all the doctors I had seen over the years, I couldn’t remember another office with a desk or pictures like this. Dr. D happened to be my mother’s doctor, and she had told me he was the best doctor she’d ever had. I could already begin to see why.

He shook my hand and seated himself behind the desk, and I told my story. I described my ulcerative colitis, my C. diff and hospitalization, and my current predicament. He listened silently, fingers pressed together and eyes fixed on me, occasional sympathy flashing across his face.

I peeled back the large bandage covering my wound. He stood to peer at it before sitting again.

When I finished, he spoke solemnly. “I agree that with your history, antibiotics should be avoided if at all possible. So here’s what I suggest: let’s try treating this wound the old-fashioned way.”

He explained that in the days before antibiotics, doctors would have kept the wound open and draining. It was still draining, he said—you could tell from the little droplet of clear pus on one side of it. That was a good sign. The infection was still exiting my body. As long as it kept moving outward and not inward, I would be safe.

“I also think it should be opened more,” he said. “I’m going to make you a dermatology appointment for tomorrow morning. Normally, I’d reopen it myself, but because it’s so close to your face, I’d feel better if a dermatologist did it. They’re better at avoiding scarring.”

I smiled wryly. “Tomorrow’s my fortieth birthday.”

He smiled, too. “Happy birthday.”

He advised me to help the wound drain in the meantime. Gently pressing it and squeezing it would keep it from closing.

I left feeling more hope.

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That evening I sat cross-legged on the living room carpet, hunched over our coffee table. I read magazines as I squeezed and pressed my wound and dabbed it with tissue. I could still feel the hardened lump beneath the surface, but it was smaller. The wound was far less painful than before.

Even though this was the eve of my birthday, I was too afraid of repeating my crisis to focus on anything but this. I sat there draining the wound for five hours.

It was a weird juxtaposition, I wrote later in my journal when describing the week. This summer, my body had been feeling healthier than ever since my crisis, but my eyes, throat, mouth, and now neck had all these mysterious ailments that required care. It was like a little niggling reminder that I was not actually healthy, could not truly relax into health. I had to make sure to not only keep taking my UC meds and getting my regular blood draws and infusions, but also wear gloves to protect my eczema when washing dishes, and use eyedrops a few times a day for dry eye, and dab hydrocortisone on the corners of my mouth for angular cheilitis, and now make sure my neck wound was open, clean, and draining, since I can’t afford to get an infection and have to take antibiotics. I began thinking of my health the way Anne Lamott describes finishing writing a book: like putting an octopus to bed. You think you’re done, then more tentacles keep emerging to be tucked back in.

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A Great Birthday Present

The morning of my birthday, I went to a dermatology clinic downtown. Ron accompanied me for moral support. This morning’s doctor—the third doctor I’d seen in twenty-four hours, the fourth I’d seen this week—was an ebullient, youngish Asian woman. Her happy energy was contagious and added to my sense of hope.

Again there was the painful numbing. Then she reopened the wound, and I could distantly feel her digging around in it with some sort of implement to drain it more. Ron, who was in the room with us, said later that he had to look away. He’s not typically squeamish, but the process was so gross that the sight of the pus made him gag.

When the doctor was done and my bandage was back in place, she gave me her pronouncement. “I wouldn’t recommend antibiotics,” she said. “At this point, I wouldn’t prescribe them even if you didn’t have your health history. It looks really good. I think it will heal on its own!”

Relief flooded through me. “Really?” I looked at Ron and broke into the biggest smile I’d worn in days. “Well—that is a great birthday present!”

She told me to keep the wound clean till Friday, when she wanted to see me once more. I left feeling elated.

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As Ron drove us home, my phone rang. It was the rheumatology clinic I’d gone to on Monday. My test results had come back negative for Sjogren’s antibodies, confirming that I very likely didn’t have that disease. It was my second piece of great birthday news.

It had already been a strange birthday. I felt sad about having to spend the morning in this way, occupied with my illness, but I tried to let that go. Chronic illness requires mental discipline. If you’re not careful, it’s easy to get sucked into despair. Grief flickered through my mind about all my countless losses since my diagnosis a few years earlier—losses big and small, from carefree birthdays to time with friends to the ability to have children.

But I had learned to focus on the good, and I quickly redirected these thoughts. I did not have Sjogren’s. My infection was passing. I could still go backpacking. I was still strong. 

Chronic illness teaches you to appreciate the absence of suffering as a gift in itself.

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To Enjoy My Health While I Have It

The next day, I would get one more phone call: the lab results from the urgent care clinic. The bacteria in my wound, the lab said, was staphylococcus. A staph infection. They said that the urgent care doctor now advised me to start oral antibiotics immediately. If staph enters the bloodstream, it can be fatal.

I called my health clinic, concerned. But my other doctors assured me I didn’t need the antibiotics anymore, no matter what had been in the wound. The staph had drained out of me. I was in the clear. 

The lab results were confirmation that I’d been in serious danger. For me, there had been danger not only from going on antibiotics but from staying off them as well. Just months earlier, my friend’s sister had died of a blood infection, perhaps staphylococcus. She’d been forty like me. She didn’t have a chronic illness, but her infection had occurred during a bout with the flu, which had compromised her own immune system.

My immune system was already compromised. I knew that if the staph bacteria had gotten into my bloodstream, the same thing could have happened to me. 

The news sobered me and made me, again, grateful for my good fortune. I was not a Healthy Person—but I still had a lot to be thankful for.

I was going to enjoy my health while I had it. I would keep living my life. I would go into the mountains.