I blame my older sister for ruining Halloween 1982.
Being four at the time, I didn’t fully understand her role as “the carrier,” or that my mother had been keeping us both under close observation for weeks as the disease ripped through her first-grade classroom. I only knew that as she pulled up my yellow polyester gypsy top and located the telltale spots, that trick-or-treating was most certainly off the table.
Although my disappointment over lost candy would soon be overshadowed by the power of the itch. Unlike my sister who had barely a scatter of pale pink dots on her abdomen, I was COVERED.
I had no idea how close the itch and I would eventually become.
I remember looking in the mirror and crying over my hideousness in between rounds of clawing at my speckled calamine-soaked flesh. At four, I had never experienced such a torturous, monstrous itch (although at four, I had no idea how close the itch and I would eventually become), and it drove me to near madness. At thirty-four, I’ve still got pits and scars all over from my lack of self-control. I still blame my sister.
A few years later, there was the head lice.
The lucky kids got caught early by school nurses with sharp eyes and wooden toothpicks (why was it always toothpicks?). But the unlucky kids (like me) got infested. Fingers buried scalp deep, scraping the itch away with furious six-year-old fingernails. My head was bloodied and crawling with bugs by the time my mom finally plastic bagged all my stuffed animals and doused me in foul chemical shampoo.
By eight, I had come to fear the itch. So much so that in third grade, when I thought I might have head lice again (I didn’t), I freaked out and poured an entire bottle of Pine Sol over my head. I remembered my ragged first-grade scalp and was too scared and ashamed to confess my fears to my mom. Luckily for me, the chemical stink of Pine Sol would permeate the entire house and blow the cover off my covert operations before I accidentally blinded myself.
But by high school, the itch was pretty much just a vague specter of unpleasantness that lurked in the background. Occasionally, a frisky mosquito could jolt back the memory for a minute, but those were easily banished with an application of After Bite and an X dug into the infected flesh with a fingernail. At that point, like most kids (I assume), the itch and I had an understanding.
The summer before my twentieth birthday, I was working at a local summer camp as a counselor, doing all those important summertime college girl things like pretending to be drunk off a single Heineken and giving hand jobs in the camp’s pump house after lights out.
That summer, I also woke up one night completely covered in giant itchy welts.
At first, I just thought that they were mosquito bites. But slowly, the lumps began to multiply and spread. I was terrified. (Although it was sort of exciting to leave camp to go to the emergency room.)
It was determined that I was having a bad reaction to some medication, but that it was “nothing serious.” I was injected with some Benadryl and sent home to sleep it off. And by morning, they were gone.
Until they weren’t gone. Pale pink dots would emerge by afternoon, and swallow up my arms and legs in puffy patches that itched like my skin was on fire. Unlike mosquito bites the sat quietly on top of this skin, this itch came shooting from deep within. I imagined that peeling the affected skin and muscle away from the bone in thick strips would be the only way to find true relief. I was miserable, but was assured by my doctor that it would be short lived.
I waited a week or so to let the suspect medication to “work its way out of my system.”
The welts clustered angrily at my joints, further agitated by the constant scraping of my nails, and made it painful for me to bend my knees and elbows. At one point, I wrapped the affected areas tightly in Ace bandages, as if somehow the compression might force them back into my skin, back where they came from.
I waited another few weeks for peak pollen season to die down.
I was trapped at the Applebee’s with my hives and nothing to say and nowhere to go, and the waitress definitely wasn’t coming to break the tension.
I tried going out, too itchy to have fun. I tried staying in, too itchy to rest. Too itchy to do anything except work on my mental mind-over-matter techniques (don’t scratch, don’t scratch, don’t scratch), and then break down and bloody myself with frantic (but ultimately unsatisfying) orgies of scratching. The cycle was unrelenting, and BORING. Like a bad date that has nothing useful to contribute to the conversation but won’t leave. I was trapped at the Applebee’s with my hives and nothing to say and nowhere to go, and the waitress definitely wasn’t coming to break the tension.
I waited a few more weeks just because I was unwilling to deal with the fact that the hives might be more serious than just some bunk meds. If I could just “stick it out” for a few more days, the whole mess would resolve itself and fade into the background with its itchy brethren chicken pox and head lice.
But it didn’t. The summer was over, and the period where I could try and distract myself from my condition with bad daytime TV and Benadryl naps had expired. I had to go back to school, to clubs, and friends, and trying to learn something. Do you have any idea how hard it is to get anything valuable out of a ninety-minute lecture on the themes of loneliness in My Antonia when all you can think about is how your corduroy pants are too thick to give you any useful access to your uncomfortably electrified flesh? I didn’t learn much the first semester that the hives were assigned to be my new roommate.
A few more weeks into my itchy denial period, I really started to fray. The Benadryl wasn’t working. Not even making a dent. And I would sit for hours, rocking back and forth trying not to itch, but so full of allergic reaction that I would actually start twitch. I called it the “histamine shakes.”
Two months after the first outbreak, with no signs of improvement, I finally decided to go see an allergist.
He sort of looked like a fat melted version of Albert Finney, and he started most of his sentences with “a young and attractive girl like you . . .” But at nineteen, I didn’t realize that choosing your own doctor was an option, so I went with it.
In standard doctor’s-office fashion, he asked me a few questions, examined my splotches, and spat out a diagnosis: chronic urticaria. Which turned out just to be “chronic hives” in doctor talk.
But at least if it had a fancy medical name, maybe it would have a fancy medical cure as well.
Apparently, the cause of the problem could be a number of things, and we would need to do some testing (i.e. copious needle jabs) in order to figure it out.
Initially, I was happy to trust in the flabby calm of Dr. Finney. He had me breathe into machines that graphed my lung capacity, poked my skin with a variety of different allergens (nope, not nuts or tree fruits), and regularly sent me home with bulging paper sacks of free allergy meds. It all felt very productive and official, even if I was still covered in itchy welts.
I was committed. Willing to do whatever it took.
Crazy elimination diet? CHECK.
Prescriptions for medication that clearly exceeded the recommended dose? DOUBLE CHECK.
But five appointments and several gallons of blood later (which I can only assume they kept in some sort of vault, lined up in a test tube army), I started to become skeptical and impatient.
I gave up smoking.
I went off the pill.
And back on again.
I took vitamin D.
I ate nothing but white rice and apricots for ten days.
I took steroids until I was a pants size up and had that puffy steroid face that you usually see on cancer patients. It was the only thing that made my hives go away, but it hardly felt worth it.
Why wasn’t I fixed yet?
Why couldn’t Dr. Finney uncover the answers by the end of the episode like the doctors on TV?
My life had become a game of medical pin the tail on the donkey. A continuous do-se-do of blind stabbing at possible causes. But the hives didn’t take the hint, and kept hanging around, refusing to leave the party.
I was being pursued by an unrelenting enemy, and my pleas for help were being ignored.
This is exactly the moment in the movie when the hero (broken by cruel and unfair circumstances) decides to take the law into his own hands.
If Dr. Finney couldn’t help me, I would help myself.
Except that when you’re a sophomore in college, your vigilante spirit doesn’t have a lot of options.
Just one really. (To the Internet!)
“In most cases of chronic hives, a cause is never clearly identified.”
Somehow, Dr. Finney had neglected to tell me that there was a chance (a GOOD chance) that he would never figure out what was wrong with me. That I might just be sentenced to itchy hell forever. I felt so betrayed. Why hadn’t he mentioned this before? What else was he hiding from me?
WebMD had lifted the veil, and lit the fuse on the cannon that would launch me into complete madness.
I burned through all the reputable websites in less than an hour.
They all said exactly the same thing. A lengthy list of “could bes” (thryroid (nope), lupus (nope), parasites (nope and gross), followed by a discouraging string of “probably nots”:
“Isn't well understood.”
“Difficult to pinpoint.”
“Extensive workup does not uncover an etiology.” (Medscape gets a little lofty.)
I don’t know why I expected to find something different on the Web from what I was finding in Dr. Finney’s office. I don’t know why maxing out all the reasonable websites with actual real medical information wasn’t enough to get me to put the brakes on my panicked search.
But I felt so hopeless and trapped in my own skin that I morphed into this relentless, tunnel-visioned, amateur detective who would NOT SLEEP until the case had been solved and the hateful body had been brought to justice.
I tore through the second-tier medical sites with stupid names like mediangels.com and web4health.info, but they were just ad-filled copy-paste jobs from the real sites. No new info there.
Again, you would think that at some point I would pause and realize that (now several layers deep into the Internet) it was time to call off the search.
If you’ve watched Lorenzo’s Oil enough times, you really truly believe that the answer is out there.
But the thing about the Internet is that it is full of dark, dark corners parading as informational websites. And if you’ve watched Lorenzo’s Oil (or any number of rose-colored movies where the hero manages to cure his own ailment with tenacity and a high school education) enough times, you really truly believe that the answer is out there in those corners. You just have to keep digging.
And so, I dug. Drunk on desperation and denial, I visited every skeezy back alley and abandoned warehouse of medical misinformation and anecdotal evidence that I could find on the Web. I wandered around alternative healing websites recommending reiki therapy and homeopathic remedies and deeply personal blogs written by people had cured their illnesses with beet juice and chanting. Every day (every hour) I became convinced of a new root cause, or found a new definitive answer.
When other girls my age were agonizing over phone calls to cute boys in their Intro to College Writing classes, I was making manic early morning phone calls to Dr. Finney’s office and demanding that his secretarial staff “put me through immediately.” My hives were an emergency.
I don’t know if it was because of my “young and attractive girl” status, or because he felt bad that he had yet been able cure my ailment, but Dr. Finney took my call.
“I have systemic candidiasis.”
I was serious. Determined. Convinced.
And a little more.
“On the Internet . . .”
“Maybe if you just . . .” (I fumbled.)
I lost all of my words. All my hours of research. My conviction. It all just fell out of my head and flopped around on the floor. Everything I had rehearsed now sounded so silly and wrong. Idiotic.
“Alexandra, systemic candidiasis is only found in people with extremely compromised immune systems, like cancer and AIDS patients.”
Dr. Finney’s laughter filled me with a new kind of shame.
Two years on the medical merry-go-round and I was so detached from reality that I genuinely thought that one semester as a biochem major and a dial-up connection would allow me to out-doctor an actual doctor. Dr. Finney’s laughter and accompanying swift dismissal filled me with a new kind of shame.
There is a reason that doctors hate WebMD. I had become that reason.
I hung up the phone and laid down for a bit. Alone with my hives again.
I would visit Dr. Finney’s office a few more times over the next few years before I completely gave up. Or rather, gave in. They had run out of possibilities. There were no more tubes to breathe into or blood vials to fill. No new miracle pills or elimination diets on the horizon.
The hives would be my constant companion throughout my mid to late twenties. It got to the point where I just had to call Dr. Finney’s office and they would call in a prescription for the steroids I required when things got really unmanageable. I didn’t even have to come in anymore. I was their failure, and they didn’t want to see me.
It never stopped being awful. The shakes, and the welts, and the unrelenting itch. But somehow, I did get used to it.
I would see other people scratching frantically at mosquito bites, whining as if it was too much for them to bear.
I was living in a constant state of itch and inflammation and I could just sail through my day like it was wasn’t even happening. Itchy was my baseline. It had become my normal.
And then, one day, they went away.
I had always drifted in and out of brief periods of remission, but after almost 10 years of near constant discomfort and no available cure, it was dangerous to be too hopeful. Even after a year, I was still waking up every morning examining my joints for telltale pink patches.
They weren’t there.
It was like my body was no longer punishing me for past wrongs. It had gotten over its grudge, and forgiven me at last.
It was a revelation. Itchy isn’t cancer or MS. Itchy isn’t even herpes or scoliosis. But even though the threat was minimal, the impact still colored every single moment of my life for almost ten years. (Take the pills. Ignore the itch. Take the pills. Ignore the itch. Call the doctor. Get more pills. Wear long sleeves to cover the welts.) I felt like I had been released from prison. Like my body was no longer punishing me for past wrongs. It had gotten over its grudge, and forgiven me at last.
But as my baseline returned to “not itchy,” all those hivey years started to recede into the background, and got mixed in with the chicken pox and the lice and all the other itchy moments that I could only vaguely remember. I had let my guard down.
And then, last year, maybe they missed me or something, or maybe they just decided that I had gotten too comfortable without them. . . . They came back.
I hoped that it was a momentary blip. I started trying to eat better, get more exercise, stop smoking (again) in the hope that i could force them back into hiding. But, several weeks later, they were still there. I knew this dance. I picked up some antihistamines at the pharmacy, and called the allergist.
Unfortunately, Dr. Finney had retired and had been replaced by some hot young allergist upstart who didn’t laugh at my jokes. He asked me the same questions I had answered ten years before (my optimism gone, and my answers now tinged with impatience and spite), made me breathe into a machine, and then handed me a bag of new pills and an order to go down to the lab and get some bloodwork. He gave me instructions to call and make a follow up appointment in six to eight weeks.
I took the elevator down to the lab, but it was closed.
I knew that the allergy world had changed a bit since last I was living in it. No cure had been found, but a whole new battery of crazy hoops had been developed that I could attempt to jump through if I dared. I had heard on a radio show about a guy who cured his hives by giving himself a controlled dose of hookworms. I saw a documentary about another guy who cured his hives by drinking nothing but green juice for sixty days. And then there was that new asthma medication that showed possibilities in the realm of chronic hives if you would just be willing to get painful weekly injections that wouldn’t be covered by insurance for off-label use.
“Fuck incompetent phlebotomists and granny-grade Monday-through-Friday pill cases.”
“Fuck Dr. Upstart and his three new pills to add on top of the pills that I was already taking.”
“FUCK THE FOLLOW-UP APPOINTMENT IN SIX TO EIGHT WEEKS!”
I crumpled up the lab order and jammed it into the bottom of my purse. The sack of pills got similarly shoved into the back of my underwear drawer. I wouldn’t be going back for them.
I couldn’t do it again. The worst part of those ten years before was the part where I was hopeful, and my hope kept getting crushed over and over and over until I lost my grip on reality completely. In my insistence on remaining optimistic, I’d kept mangling my life with new diets, tests, and lifestyle changes that never worked. The quality of my existence went down, and the hives just stayed there to taunt me.
This time, I would quit the fight right up front.
It’s been almost a year since their return, and the hives and I have developed an understanding.
I won’t try to destroy them with crazy untested miracle cures, and they stay manageable with two pills a day. Granted, autoimmune malfunction doesn’t generally respond well to bargaining. Despite being more under control than they were my first go round, I have developed a new and exciting hive response to extreme cold (which isn’t at all inconvenient, living in Maine). But overall, my life is livable again, hives and all.
If something really promising should bubble to the surface in terms of treatment, I might reconsider giving dreamy Dr. Upstart a call . . . but for now, I’m going to back away from the pills, and the tests, and the doctor’s visits (and most definitely the WebMD), and leave the tireless detective work to the people with the really serious diseases. Alexandra Munier is a university office manager by day, and a manic hunt and pecker by night. She writes the blog broke207 about being young and broke in the State of Maine, but will essentially write anything for anyone (if they ask her nicely enough). She has suffered from nightmarish allergies of all varieties since her early childhood.
Art by Thomas Boguszewski.