Tikshok

Exactly six months ago, a “collision” forced me question the rest of my life.  “Ka,” the event: me, who I thought I was, against a new reality. “Lizion,” the gradual diminution of its effects, like the reverberation of a bell.

I didn’t post what I wrote back then. It was too earnest, too afraid. I revisit it today with more experience and less alarm.  

March 27

I did not die yesterday. Today, I didn’t die, either.

No one else seemed to think I would die. My husband, the kids on the phone before I left. No one. They assumed I would take precautions, and then be fine. But I took my steps—intrepid on the outside, carefree, cavalier—aware that each foray to the ridge or patchcut or daffodil farm or orchard or game camera could be my last.

The medical system didn’t seem to think they needed to protect me. The ER had released me a few hours after I entered on March 20, which was the Sunday evening before—with prescriptions and bruises on both elbows from the IVs. The specialist’s office gave me an appointment five weeks out—“earliest available”—and assumed I’d be alive when that date dawned. But I tucked insecticide-treated pants inside my treated socks, covered my t-shirt with a treated long-sleeved shirt, and sprayed repellent on ankles, wrists, and neck.

This vigilance can’t last. If not yesterday, then today. If not today, then tomorrow. If not tomorrow, then one day I will be bitten, nibbled, touched roughly by a tick, and I assume I will go into anaphylaxis again. I will use the EpiPen, right? Will I be aware enough for that?

We were getting ready to leave our cabin for our house in town. I was doing up the dishes, wiping counters, when an unquenchable itch welled up in both wrists at the same time that my feet had instant sensations of standing on hotplates set to high. My vision was red. I was clammy. I reached a hand to my wrist. No pulse, or maybe a few seedy beats? I moved to the couch, my vision flaking away, unfindable white soot flying. I scratched. I scratched. Wrists. Neck. Arms.

Back.

Torso.

Upper legs.

Shoes too tight.

I dipped upward to stand, to find my husband, but he wasn’t inside, so I returned to the dishes—b, then lay again. Then found him, then lay again.

“We have to leave. Now,” I said. It wasn’t a heart attack or stroke, I didn’t think. This was too many systems.

“Oh god,” I screamed, “what if it’s a tick?” A few weeks before, I went to Immediate Care because a tick bite in one underarm made both underarms swell up and itch. “Huh, some sort of systemic reaction,” the doctor said.

I whipped off my shirt, crumped forward against the kitchen counter. My husband said, “I think I see one. Go to the light.”

I couldn’t go to the light. I was already jumpy. Itchy everywhere. Unsatisfiable itches.

But I went to the light.

My husband pulled off a tick that had only latched lightly. Easier than scratching off a bit of leaf. He threw it on the porch. It was still alive. I told him we should save it next time as I got into he truck and reclined the seat.

Then my husband didn’t pile into the truck and go.

I was lying there.

He didn’t appear.

I ran in, slapped luggage into the truck in little bursts. Impatient, I barked, “You aren’t still sweeping, are you?”

“No,” he said, and lumbered out with the broom, which I appreciate in a way. Eventually, we left.

Then our truck was barreling so fast on the narrow roads, I saw us dead on a bridge embankment. No one could control the truck going that fast. I told him so–three times? Four? Because once he got into the truck, he kept speeding up.

Itching, itching, constant wriggling and scratching of my hands and wrists. No rest for anything. I took off my shoes. They were too tight. Mouth was full of saliva. I was panting, not swallowing right. I took a photo of my face. My bottom lip was swollen.

About 75 minutes after the incident, but still 45 minutes from the hospital, I was able to stop the incessant moving, rubbing, scratching. I was exhausted.

“I’ll live for sure,” I said. “Please slow down.” We were close enough that there was cell coverage. Paramedics could come if we needed them.

At the ER, I saw the hives—big ones on my torso and legs, sandpaper on my arms. Patches where I’d ripped the skin off my hands.

My fingertips were swollen and yellow while my hands were deep purple. Then my fingertips became purple, too. The clamp-on machine said I had 100% oxygenation. I never knew the scale made iit about 99.

An unsuccessful IV attempt on my inner elbow. I felt it and saw it in the nurse’s face. A second bad attempt on the same elbow. A third, this time on the other elbow. Another nurse coming in, working around the pads of gauze for the fourth. Then the meds. And within seconds, the second nurse said, “Your rash is almost gone.”

“You can’t get ticks that often,” the ER nurse said.  But actually, I do: that was my fifth attached tick since January, plus all the ones I catch that haven’t yet attached.

I fell asleep.

As they released me, they told me that every time I use an EpiPen I have to go to the ER afterward.

An unsuccessful IV attempt on my inner elbow. I felt it and saw it in the nurse’s face. A second bad attempt on the same elbow. A third, this time on the other elbow. Another nurse coming in, working around the pads of gauze for the fourth. Then the meds. And within seconds, the second nurse said, “Your rash is almost gone.”

Last photo I took before I went into shock.

“You can’t get ticks that often?” the ER nurse asked.  But actually, I do: that was my fifth attached tick since January, plus all the ones I catch that haven’t yet attached.

I fell asleep.

As they released me, they told me that every time I use an EpiPen I have to go to the ER afterward.

March 22

We picked up two EpiPens and some antibiotics. I made an appointment with the allergist.

I was glad to be home, but had a lot of questions. And what if my anaphylaxis wasn’t from a tick? I was the one who diagnosed it, but the internet suggested this allergy was very rare.

Could I continue to go to the cabin alone for my writing retreats? And when my husband was there, could I go off alone at the cabin? We have no cell service. Carry a whistle? Get two-way radios? Get an emergency satellite communicator?

Could I snuggle with the dog? What about my husband, who was unlikely to be as careful at checking for ticks? Do I have to gear up, over myself, all that, just for a dog walk in town? A visit to my brother’s rural backyard?

Could I bash through brush, kneel to photograph wildflowers, sit to cut berries off of saplings? Could I travel to places where I didn’t know how to access the medical system? Would other acarids—chiggers, bedbugs–cause me to react?

Would I have my wits long enough to give myself a shot?

Would my next reaction be worse?

I am the person who walks in the woods, kneels, prunes, shovels, and when I’m hot, lies on the ground with my shirt off. The cool soil, the transpiring grasses, feels nice. I’m the person who summons the dog, in the pretend belief he’ll warn me of approaching cougar. Little Sunny, our Cavalier King Charles Spaniel, has a good sense of smell, but he’s stone deaf. I am the person who snuggles with him under the mutating clouds. is stone deaf. He lies against me.

So, yes, of course I come up infested.

March 27

A week passed since the anaphylaxis. I read up on herbal versions of bug dopes, gaiters, chemicals; sent away, everything arrived. We returned to the cabin. On the first day, I wore my permethrin-soaked socks and pants and long-sleeved shirts, my new gaiters, and reeked of bug dope, which I’d splattered on my gaiters, at my waist, in my underarms, and at the nape of my neck. I checked for ticks six times. The second day, I smelled a little less like bug dope because I used less, and I checked five times for ticks. At lunch, I let out my ponytail, scratched my sweaty scalp—it’s hot under all these protections–and tick plummeted out of my hair onto my forearm. That’s the one I photographed here.

April 2

A week later, we were twenty minutes from the cabin when I got a tick. People who haven’t had them have asked how one knows. You know the sensation you might get after a vaccine, maybe half an hour after it’s injected? Localized pain and bruise? For me, that’s what it’s like, but sudden.

My husband pulled it off. Like the first one, its appendages were waving, it had all its parts—it was entirely alive. I hurried back to the cabin.

Twenty-five minutes later my feet got hot, and the pixels of my vision began to blow away like powder. Without dithering or letting myself be squeamish, I read the EpiPen directions and gave myself the shot—it turns out, it’s very easy–then asked my husband to get me to the ER.

This time, he drove too slowly. I wondered, could I drive?

Unlike last time, this time, the care providers told me to get an allergy bracelet, and at the first sign of anaphylaxis, to use antihistamines.

April 8

I wrote the allergist to warn him I was coming in a month with this odd allergy. He knew I needed answers, and was able to get me in the next day. Dr. Solensky is also an immunologist; I’ve talked to him before because I’m IGA deficient (meaning I don’t make much of a particular immunoglobulin, which is probably why I get so many intestinal parasites). TMI? Sorry—but I trust him. He was prepared

He agreed, this had to be a tick allergy. A specific one. “Don’t worry about chiggers and so on.”

About a bracelet, he said, “You don’t need one. If someone finds you passed out with hives, they’ll know it’s an allergic reaction. And besides, you’ll have a few minutes to give yourself the shot. You won’t pass out without the warning signs.”

About being alone out in the bush, snuggling with the dog, the husband, he said “Always have a couple EpiPens—one within ten or so minutes of you, and another you can get to soon. Go on with your life. The health benefits of being out there far exceed the risk of dying from this. Even if you use the EpiPen three or four times a year, or more, that’s OK. And by the way, you don’t have to go to the ER each time you use an EpiPen. Just be vigilant—Oh, and skip the antihistamines. They will not save your life. You can use them for symptoms if you want. Use the EpiPen,” he stressed.

He clarified that I’m allergic to the tick’s enzymes, and my reactions are almost instantaneous. This is not a reaction to organisms the tick is putting in me. It’s unlikely there will be a shot to desensitize me because there are too few of us—a few reports in Australia, one in California. But on the good side, Dr. Solensky opined that maybe I had the reaction because I had so many tick bites so close together. “Try to spread them apart,” he laughed. Also on the good side, if everyone else gets Lyme disease and all the others, I could be the last person standing–I’ll have the ticks off me before diseases can get in.

July 2

We were preparing for 4th of July visitors at the cabin when I got another tick. We pulled it off. I stood poised, waiting for the signs. It itched. I got a large welt. No anaphylaxis. We celebrated the 4th of July, as usual.

September 20, today

We have walkie-talkies and a satellite alert system for emergencies now. We also have a lot of operator errors. I don’t know that we’d save each other’s lives with these things. In the first case, both of us need to be competent at the same time. In the second case, my husband would have to figure out how to pair his phone with the apparatus and where to look for messages, and what to send, after he hit an SOS. They are better than nothing though.

We haven’t seen a tick for a few months. I’ve almost stopped using bug dope. I haven’t re-soaked my clothes with permethrin. I’m not always using the gaiters, and I may do a tick check once a day.

That’ll change in January. I’ll be vigilant again.

My tikshok. The collision. The harsh “ka” of learning I have a serious vulnerability, then the drawn out melodious “lizion” that I can barely hear.

But it’s OK. I am the person who is still here.

7 thoughts on “Tikshok

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  1. Wow! I didn’t know you were experiencing this much trauma/drama! I hope this is not a “forever” matter.

    Very well written. Don’t know about Portland, Seattle etc papers, but the Washington Post has a weekly “Health” section that includes such personal submissions, usually well written, and perhaps 1,500 words.

    Have you had/about to have your multi-day writing workshop? Hope it has been/will be fun and good.

    I’m once again writing every day. First 15-20 minutes work and then I get into it and out of everything else for an hour or two or more.

    I am having internet problems on my computer so having to write you via my IPhone—slower and shorter. Damn, I wish I had a high-tech part-time secretary! (Hey, that’s an idea!)

    Love, Bob

    Sent from my iPhone

    >

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    1. Thanks, Bob. The retreat starts this morning. Im in a lovely little house on the side of a ridge, about to leave for the gorgeous Sitka Center for Art and Science, in Cascade Head. Yeah, the tick thing was one very real reminder of our human vulnerabilities! When our system is a little askew, crazy things can happen. And i think/thought of the Oregon Coast Range as mostly benign! ( except for falls, mostly).

      Get Outlook for iOShttps://aka.ms/o0ukef ________________________________

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  2. Sorry to hear of this horrible affliction! I hope you escape future attacks (and I hope you have an affordable source for epi-pens).

    I suffered anaphylaxis from an attack of killer bees: an aggressive minority of sisters in my hive. I’ve been stung since by individuals without incident, but I’ve given the hive away.

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  3. Wow Barb, not wonder i did not hear from you. i was always tick vilagent out there. why i dress the way i did. but never in the house. Even at my place in Alsea always stripped everything i had on Rick did a tick check.

    Hope you can keep doing the things you love.

    Ilona ________________________________

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  4. WoW!
    Thanks for sharing with me – you haven’t replied to my text and i was
    getting worried.
    In addition to being a terrific writer
    You are such a survivor!
    Looking forward to meeting so we can catch up.
    xxoo

    Like

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