Living with a Chronic Illness always keeps you on your toes. You never know when you fall asleep if you will wake up in the morning healthy, even if nothing the day before gave any indication that you might be feeling the slightest bit ill.
I thought I had my disease sorted out, but I was rudely reminded that I wasn’t in control last week. I stood at my kitchen sink washing dishes when suddenly my body felt like it was on fire. Without thinking, I left the water running and ran to my bathroom. In the mirror, I was mystified. All the skin that covered my head, including my scalp, was a brilliant red. The burning sensation that pulsed over my face and through my ears was creeping down my pale neck. In a blink, my flesh went from barely flush to a deep red that I wouldn’t even wear as lipstick.
Quickly I went through a medical checklist that I knew the doctors would ask. Had I eaten anything different today? No. Did I use any new laundry soap? Nope. Have I changed anything in my life at all? No. Because of my health issues, I stay pretty routine and safe.
I looked through my medicine cabinet I found how ill-prepared I was for an allergic reaction. I mean, I had the children’s stuff covered, but for my husband and me, we’re not in the same boat. I showed him how not only was my face turning into a tomato, but I pulled down my shirt and showed him that my throat and cleavage also matched.
After double-checking that my breathing was fine, he left to pick me up some Benadryl.
I’m not sure how I’ve done this, but I have unconsciously surrounded myself with friends in the medical world. I flicked through my contacts, and one of the first names I sought out was a nurse I’ve known since first grade, who is a dermatologist nurse by happenstance.
Without any warning, I texted her, demanding what the hell was going on with me. I really didn’t feel that bad asking why my skin was bright red. It was far was less personal than some of the questions I had thrown at her, especially those I would ask her when I was pregnant.
Her first response was as expected. “”Show me””
After sending her a flurry of pictures, she was no longer a friend but a medical professional.
“Any hives? Itch? How do you your lips and tongue feel? Have you had niacin today””
My only answer… “”WTF is niacin”” and for those who also don’t know what niacin is, it can be found in cholesterol medication and vitamin B3. But her answer was more familiar to those in our working mom’s lifestyle.
“It’s in energy drinks and energy supplements. Causes flushing”
I hadn’t touched any of that. I have to cut off coffee at 1 in the afternoon or, I’d never make it to my early bedtime.
But there was something else. My mouth got a very intense metallic taste before I felt like I stepped too close to the sun.
I guess this got the gears turning in her head.
“What meds are you on?” She asked.
At this point, I spelled out my day to her. “No medication. I had coffee, water, a coke, and sushi for lunch at a place that I always eat at. Then I took a shower. This started after the shower. No new products. I sent Tyler to get Benadryl.”
“Good idea on the Benadryl. How is your urine output””
My urine output. I thought? I’m asking about my skin, not my liver.
“Hold for update,” I told her. I thought about her dealing with her tiny humans and my little monster calling mommmmmmy from bed, but I forced myself to pee. “Urine… clear”
“Good”… “Any pain in the back. Fatigue? Nausea?”
“None. Back feels weird but nothing I can pinpoint” As I texted her back, I lifted up my shirt. The base of my neck, down my right arm, and above my right hip were now burning and red. Nothing made sense, and I told her about the new developments.
“Last time you got a full panel of blood work done?”
“Last September.” I had to think. I’m pretty up to date on the inner workings of my body, but at the moment, I was drawing a blank. It was a guess, but I know there was nothing anymore recent.
I waited less than a minute and received a novel.
“So it could be an allergic reaction, but nothing has changed. It could be a reaction to antibiotics but you aren’t taking anything. Possible Rosacea ….but I asked all of those questions because the metallic taste is sometimes related to kidney function. But you’ve had blood work within the year. So they would have caught that. I’d schedule a primary appointment and keep pictures.”
By this point, my husband was back, and I had taken two Benadryl and was starting to get groggy. She drilled me about any topicals I might have on hand, none of which I did. “No, I don’t react well to topicals or medication in general.”
“Now you’re being difficult. lol”
“Obviously. Revisit pictures to prove point.”
I passed out shortly after sending her a million thank yous and sending my coworkers a few texts and pictures warning them I might oversleep due to Benadryl.
The next morning, somehow, I woke up on time. No longer was I a bright red but a glowing baby hamster pink, only without the pain. I figured pink was a safe color and went to work.
That was Wednesday morning, and even though my on-call nurse had harped on me to call my GP first thing in the morning, I didn’t do it. I already had an allergist and immunology appointment planned for April, and this didn’t kill me, so I figured I could wait.
But nothing went as planned.
I ended up going to the doctor that Friday for a different reason. I brought up the reaction to the nurse and the physician, and they both said it could have been environmental. I gave it no thought over the weekend or even into the beginning of my week until dinner Monday evening.
I was sitting visiting my parents for dinner, and my mom’s eyes looked like they were going to pop out of her head. Before she even had the chance to tell me that my face was red, I could already feel the burning sensation.
I called my doctor first thing Tuesday morning, but because I had been taking antihistamines, I couldn’t get tested until they were out of my system, which meant waiting for a minimum of five days. I was okay with this idea after speaking to my doctor. I figured this would be an easy fix. But after talking to another doctor, he reminded me that it may not be that simple since one autoimmune disease could quickly morph into others. With that in mind, I knew I just had to wait.
A few years ago, the thought of waiting would have stressed me out. My mind would be racing, wondering what they would find wrong with me this time. But now I didn’t have time to worry. My mini-me wouldn’t care what the doctors tell me my new diagnosis is. I’d still be the one she needs to get her milk from and turn on Rapunzel for the ten millionth time. Living with a Chronic Illness doesn’t mean your world stops. It just means you adjust, survive, and send a bit too many text messages to lifelong friends when your body does weird things.
Update: We figured out through lots of allergy testing that I’m basically allergic to living in Florida, but what had triggered this attack was a conditioner I was using. I’ve used it before, so I didn’t check the label when I bought it again. It wasn’t until I was throwing it out did I think it gave it a second glance. Now I check everything in case the manufacturer has changed ingredients.