The dermatologist rattled off instructions to watch for redness near my left eye, to take the prescribed antiviral medication, and to return to the office on Monday.
Finally, I managed, “Are you sure?”
“I’m going to run a culture,” he answered. “But, yes, I’m fairly certain.
I stepped down from the table, feeling off-balance. This can’t be happening.
“Take a deep breath,” said the doctor, noticing my facial expression.
“What if the pain gets worse?” I asked, nervously
“On a scale from 1 to 10, what level is it at now?” he inquired.
“I guess maybe a 5.”
“Do you have Tylenol or ibuprofen in the house?” he asked gently. Before his disappearing act, he threw in, “Call if needed. We’ll see you next week.”
How could this insanity have happened? Over the past decade, my most serious health issues had been poison ivy and shoulder pain remedied by a hot soak in the tub.
By the time I pulled into the parking lot, I had acquiesced, more or less, to the idea of shingles and me sharing a sentence. I grabbed a space in front of the drug store, turned off the engine, and said a silent prayer. Dear Lord, thank you for everything in my life. Please heal my body. I hesitated. Help me find the good in this situation.
Once home, I sat down at the kitchen desk and called my mom and sister. I’d be fine. My plan was to take it easy for a couple of weeks and focus on getting well.
When the call ended, I was petrified. Now it’s just me and my shingles.
I pulled a prescription vial out of the paper bag and read the label instructions. In typical, hyper-organized fashion, I grabbed pen and paper and drew a chart to track my compliance with the seven-day antiviral regimen.
In the evening when I plopped down on the sofa, I thought about others I knew who had experienced shingles. One, like me, had been in his 50s when he got it. The others were older.
Each had used the same phrase to describe the pain of shingles, claiming, “I wouldn’t wish it on my worst enemy.”
Now shivering, I wrapped a heavy woven throw around my shoulders, as my imagination transported me to a place of horrific itching, disfiguring pustules, and relentless, excruciating pain.
What would help me cope with this fear?
I grabbed my laptop.
My Shingles Journal
Friday, November 20
Yesterday I saw Dr. Y. The diagnosis is trigeminal shingles with involvement of the second and third nerve divisions. My symptoms are on the left side of my face and scalp. This morning I awoke, whimpering. The left side of my head was throbbing from front to back. The shock-like feeling around my ear and jaw sometimes gravitates to my upper or lower teeth. Down in my tonsils, it feels like a typical sore throat, but when I run my tongue along the upper inside of my mouth, there’s a criss-cross of lines, like a tic-tac-toe.
Shingles is transforming me into a monster.
There are more lesions on my face today. Some are weeping. I am swollen from chin to cheek, and there’s a widening band of redness from chin to ear.
I’m chilled with the thermostat set at 73 degrees. I’ve lost most of the hearing from my left ear and am tired after climbing a flight of stairs.
I am old and decrepit.
Friday, November 27
On Tuesday I saw an ENT physician. He said there’s nothing to be done about the lesions in my throat. I am to suck on lozenges. He’ll look deeper inside my ear when it’s less sensitive.
Yesterday I slept most of the day. Sis offered a plate of Thanksgiving goodies, but the thought of rich food wasn’t appealing. With vegetable soup still too painful to swallow, I stuck a frozen mac and cheese entree in the microwave.
A few of the lesions on my face have healed. A scab that butted up to my lower lip was annoying, and I pulled it off too soon. I’m betting the rough, reddened areas on my cheek would have turned into lesions, too, if not for the antiviral meds.
Monday, November 30
Dr. Y says I’m past the infectious stage. While the shingles lesions were active, it would have been possible for me to pass the varicella-zoster virus to someone who had never had chickenpox. As a result, that person might develop chickenpox (but not shingles). It doesn’t bother me that I got shingles in spite of having had the vaccine three years ago. What I’m upset about is my ignorance. Every article about shingles that I’ve found online this morning lists stress as a factor.
For months my body had whispered, pleaded, and finally shouted at me. I didn’t listen. My poor, dear nervous system paid the price.
The face in the mirror reflects my stupidity.
Friday, December 4
I’m back at work with nerves supremely on edge. Last night the sound of screeching chimpanzees on a television commercial about sent me through the roof. When I stepped outside this morning, the wind sent a wicked sting to my face, forcing me to turn around while I struggled with the hood of my jacket.A single strand of hair on my cheek is intolerable. Even when nothing’s touching my face, I have a sense that something is. I’ve taken to wearing a headband and clips to keep my hair secured.
All day long I plead with my brain to ignore the faulty signals from damaged nerves. Unfortunately, it’s much easier to bring pain on than to turn it off.
My only weapons are to keep my facial muscles relaxed and to avoid all things stressful.
Saturday, December 12
When I awoke this morning, my face felt as though someone must have applied sandpaper to it and then left it to bleed. Right now, I’m trying to ignore the sharp needles being shoved, one at a time, into my cheek. Topicals have brought no relief.
I’m happiest while standing at the sink and rinsing my face with warm water and facial cleanser. Sometimes I stay there a long time because it feels so darn good. After patting dry, it’s Vaseline from chin to cheek. For whatever reason, this routine helps calm the pain down for a while.
This morning Mom and I went to the outlet mall. As we walked from store to store, the sting on my face began to increase. I had cleanser and Vaseline with me in a plastic bag, but we were far from running water. I ran back to the SUV, sobbing.
There’s an odious sensation near my chin in the spot where the rash had first surfaced. When I touch the spot with my finger, my mind conjures a massive swarm of bugs trapped underneath my skin. If I had to pick one, I’d actually choose the pain over this inhuman itch.
When will this loathsome disease be done with me?
Wednesday, December 16
My family doctor said she can prescribe something for postherpetic neuralgia but agrees it’s better if I tough it out with over-the-counter medication. She talked about nutrition and avoiding stress. She said she feels a meditation class would do me good.
Wednesday, December 23
I have an almost constant urge to scratch my left ear. There’s what looks like pitting above my chin. I hope it’s temporary. My chin has started to feel normal in some spots, and the redness on my face has lightened. I've stopped carrying my facial cleanser and Vaseline around like a security blanket.
Last weekend I got up the courage to have my hair colored. I was nervous while the dye was being put on near my face, but everything went okay.
At eight weeks, I was symptom-free, except for the false sensation of something touching my cheek, which lasted a while longer.
I felt fortunate. Many who get shingles have postherpetic symptoms that linger a year or longer. For some, those sensations may never completely leave. It’s also possible to get shingles more than once. That fact continues to haunt me.
However, several good things happened to me as a result of having had shingles. Not just the five pounds I’ve kept off or the two weeks I had at home without responsibilities and deadlines.
Shingles taught me that my body will only put up with so much.
It’s a daily struggle.
The hyper-organized personality in me still rules. It’s the part that does the nitty-gritty work that some co-workers would call my “staring at the computer all day.” When I’m into my work, I don’t take breaks or usually notice the hours passing until my stomach growls and I glance up to see it’s lunch time.
My lack of body awareness means I need to periodically check myself. Am I tensing up my neck and shoulder muscles? Am I grinding my teeth? Do I need a bathroom break? Have I taken on too much in my life?
My experience with shingles has nudged me into some self-protective habits.
To avoid feeling on edge during the day, I reluctantly limit myself to one precious cup of coffee in the morning. When the familiar, burning pain in my shoulder comes, I take a break or stick a hot compress in the microwave to put behind my neck. If sensory overload starts to get the better of me, I change what’s bringing pain to my brain or else leave the room. I’ve also started saying “no” more often and spending more time away from the noise of a busy day.
More time outdoors in the fresh air.
More time reading a book or petting a cat.
More time sitting quietly with someone I love.