Gray's Anatomy of Invisible Illness (Part 1)

I was obsessed with abecedarians as a kid. Not a surprise for a word nerd, but I outgrew my poetry phase and forgot the form. Then I rediscovered it when I read The Shell Game. Surprise, surprise - they make perfect hermit crabs.

Of course, attempting to track down words that FIT into a given topic doesn’t always work (and I’m not even talking about the letters X or Z). But this time around, I succeeded.

I divided the piece into two, given the length of the alphabet. (Which means you’ll have to stick around next week for Part 2!)

Adenomyosis

(ad-uh-no-my-O-sis) Endometrial (lining of the uterus) tissue grows into the muscular wall of the uterus. The displaced tissue behaves normally (thickening, breaking down, and bleeding) during each menstrual cycle resulting in painful, heavy periods.

My period was a monthly nightmare.

Okay, in the interest of fairness, I don’t know anyone who enjoyed their reminder of female dues. But my uterus held a grudge for some unknown crime, doling out cruel and unusual punishment with the sadistic glee of a crooked executioner.

The women I knew could make discreet trips to the bathroom with a tiny tampon secreted in the palm of their hands. And they continued to wear thongs throughout their periods (for logical reasons I never understood). I had to shove overnight pads into my pocket every four hours, modeling the latest in Grandma panties to support the equivalent of adult diapers.

Commercials for variety packs insisted they boasted a selection “sufficient for every day of your cycle” while laughing teenagers engaged in every activity imaginable. A quick perusal of the package proved the lie behind the campaign. Ounces? Who measured their flow in ounces? And what respectable woman on her period played volleyball or rode a bike around town? I couldn’t do more than dig sweats out of the bottom drawer and huddle on the couch - on a good day.

Friends joked about their “monthly hemorrhage.” I scrambled for the same sarcasm as my lips turned white, my energy tanked, and I struggled to remain conscious. Doctors prescribed iron - and then increased the dose as my hemoglobin taunted them from the low end of the spectrum.

I developed a taste for spinach salads, determined to replenish the iron my body seemed determined to shed. Then I marked entire chunks of the calendar off my schedule: No swimming, no water parks, no white clothing, no adorable miniature purses, no exercise, no social engagements whatsoever.

My uterus laughed at my efforts.

Bradycardia

(brad-e-KAHR-dee-uh) A slow heart rate, usually lower than 60 beats per minute (bpm).

How to break up the monotony of an ER visit: With slow, exaggerated motions, move the pulse oximeter on your finger up and down. Regardless of your actual heart rate, the monitor (fallible, prone to misreading anyone with darkly pigmented skin, poor blood flow, or hypotension) will report a slow number. If you concentrate—and practice—you can drop that rate far enough to set off the machine’s alarm.

And cause whichever caretaker drew the short straw on taking you to the hospital to make a fifth complaint about your childish behavior. (Good times)

Unfortunately, the game loses its appeal when the ECG monitor starts squawking before you even plot to cause trouble. Somewhere around the seventh time piercing beeps ring out over your head within 10 minutes, announcing a dangerously low pulse, you start realizing how irritating a device the infrared beam on your finger actually is. (Generally, you space out your annoyance throughout your visit; you’re a considerate pain in the ass)

Things only worsen when the nurse pops by and plunks a stethoscope on your chest, confirming the traitorous rate. “I need you to breathe faster.”

Have you consciously focused on your breathing—EVER?

Fun fact: The lungs know what they’re doing. And they don’t appreciate intervention by anyone. That includes YOU.

Cholecystitis

(ko-luh-sis-TIE-tis) Inflammation of the gall bladder. This can result from gallstones blocking the tube leading out of the gall bladder, bile duct problems, tumors, serious illness, or certain infections.

The human body contains an impressive list of organs it DOESN’T require to function. They help, of course, but if they’re removed, an individual continues to live. Thus, they’re not necessary.

They become bonuses for grad students when you land in the morgue with them intact.

I started paying attention to what was critical and what was expendable in my 20s. (And noted what came with a duplicate—because who needs two of anything?) At school for my degree as a vet tech, I watched doctors diagnose and remove diseased organs from cats, dogs, cows, and horses without a second thought. The animals continued to live fulfilling lives. And textbooks informed me such surgeries had served as pioneering procedures for human medicine—precursors of microsurgical techniques.

An entire buffet of extra organs bodies learned to do without. (Hell, no one even knows why we have an appendix, save to score at least one emergency surgery on our permanent medical history)

Bouncing around from one GI specialist to the next, I couldn’t figure out why everyone was insistent on preserving my gall bladder. The tiny organ served no functional purpose; it was a decorative element for the liver. (And capable of producing astronomical pain for something the size of a chunk of banana) Millions of people and animals thrived without one every day, but these doctors treated mine as a precious commodity.

After the first month of irritation, I crossed it off my “crucial” list. It took another FIVE months for my doctors to come around to the idea.

Dysesthesia

(DIH-ses-THEE-zhuh) A condition in which the sense of touch is distorted, causing ordinary stimuli to be unpleasant or painful.

I hate summer.

And the freezer section of grocery stores. And air conditioning. And fans.

The onslaught of artificial air against my skin leaves me wanting to scream. The burn of dry ice on unprotected flesh. (Yes, I know what that feels like; what biology student didn’t ignore the TA’s strict warnings?) The world’s attempt to plunge the outdoor 100-degree heat into the subzero range is equivalent to torture for my body.

Why else do people find me encased in jackets, slippers, and blankets when everyone else scrambles to don minimal clothing?

The suffocating wet blanket of the South’s humidity doesn’t help. The sun embeds needles into every exposed dot of flesh, marking my skin with unattractive freckles—the closest I come to a tan these days. (Given enough time, I’m hoping they’ll merge and leave me permanently bronze) A prolonged tattoo no one in their right mind would pay for. And then a flood of water in the air clings to every fold and seam in my clothing, weighing them down.

I get one moment to feel warm, comfortable, and then the dance of disgust begins anew.

Dress to melt in the outdoors or dress to freeze inside? Tanktop for the walk through the sticky parking lot? Parka for the cereal aisle?

Split the difference and perform a strip tease throughout the trip?

Endometriosis

(en-doe-me-tree-O-sis) A painful disorder in which the tissue that lines the endometrium (the uterus) grows outside the uterus. The disorder commonly involves the ovaries, fallopian tubes, and the lining of the pelvis. Rarely, it may occur beyond the pelvic cavity.

The body doesn’t require a uterus to produce endometrial tissue. Any remaining remnant will continue to grow and spread throughout the abdominal cavity (medical texts always lag behind reality). It’s a sadistic alien creature bent on destruction. Complete with the horrific regeneration capabilities that haunt a person’s worst nightmares.

(I lie awake, images of alien pods germinating throughout my body)

I knew the endometriosis existed before I signed the paperwork for my hysterectomy. Not the word or the disorder, but a sinister creature wrapping tentacles around my pelvis. The crippling pain that took me out every month offered proof of its existence.

But the damn monster waited until my signature hit the page to disperse. (Sentient tissue? I’ve seen horror movies based on worse concepts)

Tiny pockets of resistance; sleeper cells waiting for activation.

How else to explain the infestation’s appearance on three separate occasions? My OB/GYN routed the mother colony during the hysterectomy. But nightmare splinters remained, resurfacing again in my intestines. And more appeared a year after that, clinging to an ovary.

It’s never gone.

The tissue lives FOREVER.

Fibromyalgia

(fi-bro-my-al-gi-a) A condition of widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Painful sensations affect the way the brain and spinal cord process both painful and non-painful signals.

Shift to the left. (Wince)

Roll to the right. (Whimper)

Massage toes on the left foot. (Cry)

Stretch right leg. (Scream)

Put clothes on. (What the hell were you thinking? Cotton weighs too much, fleece feels like fire, and satin slices into flesh)

Take clothes off. (Congratulations, now you’re freezing)

Smack head into the desk. (Of course you were paying attention to every word they said. You would NEVER doze off during the middle of a crucial discussion of whatever everyone was talking about five seconds ago)

Count the number of swirls in the plaster on the ceiling to see if it changed from the last hour—561. (That nonsense about needing a minimum of seven hours of sleep a night is clearly an exaggeration)

Argue with the fifteenth doctor you waited 18 weeks to see. (Their medical degrees outweigh the 23 years you’ve lived in your body and experienced symptoms)

Curse at inanimate objects. (Test results clearly have no understanding of their impact on your life. Rather, the impact they’ve decided NOT to have on your life, residing firmly in the NORMAL zone)

Wince, whimper, cry, scream. (You’ll eventually remember the correct word for that thing you use to type words into a computer. Your brain can’t hold your vocabulary hostage forever)

Gastroesophageal Reflux Disease (GERD)

(gas-tro-ih-sa-fuh-JEE-ul REE-fluks duh-ZEEZ) Occurs when stomach acid flows back into the esophagus from the stomach. The acidic backwash can irritate the lining of the esophagus. Also referred to as GERD.

My stomach started the downfall of my diet.

Swimming in acid—a joke prompting any number of people to comment on my acerbic personality—it ticked off the first dominos in the cascade of foods I could no longer tolerate. Anything low in pH came off the list; the risk of exacerbating the hostile environment at the top of my GI tract was too great.

To my dismay, that meant more than the stereotypical tomato sauce I recognized. Careful research snatched everything wonderful off my plate: Apples, pineapple, soda, grapes, EVERY citrus (I attended college in FLORIDA, for crying out loud), juice, white bread. They attempted to add cheese and ice cream to the list, and I informed them I’d die first (a girl has priorities).

The grudging lifestyle changes did little to appease the acid pumps working overtime in my stomach. They took my work ethic to heart—and ran with it. Then laughed in the face of every PPI (proton pump inhibitor) doctors attempted to prescribe.

I might have formed a (begrudging) stalemate with the burning sensation in my chest, even after two false heart attacks. (Though I learned chest pain catapults you to the front of the line in the ER) But when even neutral water prompted an acid bath, and the lava flow surged past my esophagus to the level of my larynx, I declared war.

Heart Palpitations

(haart pal-pi-TAY-shnz) Feelings of a fast, fluttering, or pounding heart. Caused by stress, exercise, or medication. May rarely be caused by a medical condition.

Nothing beats the swooping sensation in the chest as you swing through that first towering hill on a roller coaster. It’s your body’s way of announcing, “Everything is wrong with this situation. Please correct the error,” as your brain mindlessly cheers in exultation.

Sympathetic nervous system on steroids meets parasympathetic nervous system input. (Synaptic junctions staring at two buttons, shrugging, and slamming them both down to see what happens)

I’m a roller coaster junkie, defying common sense, logic, and dizziness as my blood pressure tanks on the latest and greatest additions to the roster. Anyone in my company WILL get hauled into line or teased mercilessly for any excuse they dream up. The adrenaline rush alone is worth the toll on the body.

But a sudden drop through the chest when reading or attempting to nap doesn’t carry the same appeal. The hollow feeling causes a sense of dread to rush through the veins, activating dormant panic capsules stored in the recesses of the brain. And a sudden fist slamming into the back of the sternum isn’t a reassurance (though the return of a beating heart is, I suppose, necessary).

Without consistent documentation of an arrhythmia, doctors prefer to call anything abnormal in the chest a palpitation. (Sounds less alarming to someone WITHOUT a background in cardiology) A word reserved for normal individuals without the sense to touch fingertips to a pulse point.

Beat…

(Wait for it. As long as you’re breathing, it has to start again)

SLAM. (There we go)

Interstitial Cystitis

(in-tur-STISH-ul sis-TIE-tis) A chronic pain condition causing bladder pressure and pain, and occasionally, pelvic pain. It’s part of a spectrum of diseases known as painful bladder syndrome.

Every medical field has developed interesting methods of torture. Men and women spend hours sitting around tables inventing new ways to inflict torment on patients, complete with a suite of jokes and witty sayings to punctuate the process.

The gastroesophageal complex, undeniably, comes out on top. They crafted numerous ways to get you to swallow disgusting compounds. (Anyone that assures you there’s a “flavor” of barium that tastes better than another is lying) I’ve rejected dozens of foods and textures courtesy of that field. Though losing speculoos cookies remains the harshest blow.

But nothing equals a bladder filling test.

The indignity of a urinary catheter isn’t sufficient enough. Nor is the confirmation that a narrow tube—specially designed for the “comfort” of a potentially sensitive bladder—can create spasms throughout the pelvis. Oh, no. Doctors want to turn the bladder into a water balloon. Because THEY CAN.

And then taunt you when you dare to alert them to pressure TOO FAST. “Your bladder can hold more than that.”

(Revert to childhood when your parents insisted you could eat ONE MORE bite of broccoli despite the fact you crafted a pile of the offending vegetables in an attempt to disguise the fact you only ate one)

Do they have a bet going to see who can inflate a patient’s bladder the most? Want to try to get the fragile organ to ALMOST pop? Or is it simply a need to savor the person’s dance from the room to the bathroom with a screaming need to pee?

(Urologists require too much evidence of urination)

Jellyfish Sting

(jeh-lee-fish sting) Occurs when the tentacles trailing from a jellyfish body inject venom from nematocysts (barbed stingers).

I’ve loved sharks for as long as I can remember. (NOT dolphins, despite needing to mouth pleasantries about those bottlenose heathens on every college tour I gave) I’ll happily spend hours at a shark tank in an aquarium. And diving in the Ocean Voyager tank at the Georgia Aquarium? I won’t lie—I cried happy tears, even after a whale shark walloped me in the back of the head. (They could care less about a human being)

But that love goes out the window when you’re snorkeling in an area known to harbor hammerheads. Especially when you’re convinced you’ve sliced your knee open to the bone.

Sharp objects often lie concealed within seagrass beds. And no one (certainly not a wide-eyed college student staring at fish flitting in sunbeams) pays attention to everything around them. The slash through my knee hit first, obliterating even the worst of the hundred pinpricks that followed. I was deep enough to curl over in a check for the blood that MUST be pouring out of my leg, which meant I was at risk of an attack.

Not to mention far from shore.

Television likes to report that adrenaline numbs pain. Total crock. The entire time I kicked my way back to land (fins do most of the work, but the legs are still involved), the knee informed me it was ready to dislocate and stay behind. If someone had shown me how to do so, I would have taken it up on the offer. Especially after I clambered out of the water to find—NOTHING.

No cut, no scratch, not even the decency of a red mark. I’d channeled my inner Jaws victim for no good reason.

Two (humble) steps up the beach, and the source of the invisible pain reacted to the air. Hundreds of nematocysts embedded in my legs and arms. (Who knew wearing a shirt over a swimsuit could prove beneficial?)

Fascinated by the fish, I’d blundered through seagrass beds teeming with hydroids.

Kidney Cyst

(kid-nee sist) Round pouches of fluid formed on or within the kidneys. May be simple (benign) or co-occur with disorders and impair kidney function.

“You can’t feel that.” The typical response of doctors to any medical finding ranked less than a broken bone or cancerous tumor. (An exemption is made for an inflamed appendix—particularly if you kick the physician who felt a perverse need to press on your abdomen more than once to confirm the pissed-off organ)

Patients aren’t capable of identifying pain on their own. That’s why the medical system evolved in the first place. Doctors, nurses, and physician’s assistants invested thousands of dollars and countless hours learning how to grade agony for another individual. Everything else—surgery, pharmacology, bedside manner—are merely electives.

It doesn’t matter if someone presents to the ER with horrific upper left quadrant pain. They can even press a finger to the precise location of the offense, outlining the exact shape of their kidney to pinpoint the organ hanging in the abdomen. And an intimate history of kidney stones (“the closest thing to childbirth” my ass) is a trivial fact.

As soon as a medical professional with a fancy license examines a CT and spots nothing more than sporadic balloons of fluid covering the kidney, the supposed pain evaporates. All the patient needs to hear is the magic phrase.

Nerves possess auditory capability (naturally). And EVERYONE has the same pain sensations and thresholds. Those are basic facts.

Lyme Disease

(lime duh-ZEEZ) Disease caused by one of four species of bacteria: Borrelia burgdorferi, B. mayonii, B. afzelii, and B. garinii. Bacteria are transmitted by the bite of infected black-legged ticks (also known as deer ticks).

Doxycycline does wonders against positive Lyme titers, but it also destroys the GI tract. A fact that slipped my mind despite cautioning every dog owner with a thorough lecture whenever we prescribed the massive antibiotic for their beloved pet.

Human stomachs were clearly made of sterner stuff. (As if MY stomach had any relation to a standard human’s)

My digestive system rebelled within two doses. Despite the relief and comfort of the Nissen fundoplication years before, my GERD returned full force. The average swallow of SPIT sent acid levels over the top; contemplating eating or drinking anything else remained out of the question.

I feared the surgical repair had failed.

A sympathetic doctor reassured me, laying the blame on the drug exorcising the hated bacteria from my system—and taking every HELPFUL microorganism along for the ride. And, no, I didn’t have another choice of pharmaceutical to handle the task. (Well, I DID, but they all existed on the same “kill it with fire” scale)

She prescribed sucralfate to get me through the MONTH-LONG course of treatment.

Co-workers laughed at the measuring cup I toted into the office every day: An egg with feet smiling at the world. They laughed harder as I choked down the offensive pink chalk that coated the lining of my stomach, blocking the furious acid geysers attempting to destroy the doxycycline.

Migraine

(MAI-grayn) Headache causing severe throbbing pain or pulsing sensations, usually on one side of the head. Often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. May last for hours to days. Pain can be severe enough to interfere with daily activities.

The sinister shadow hovering at the side of the bed, changing shape and height the longer I stare. (Real or not real?)

Colors coalescing and breaking apart in a kaleidoscope of fractals. (Real or not real?)

Stabbing pain—as different from the usual waking agony as a scalpel from a dissecting pin—through the left leg. (Real or not real?)

Heart racing, exceeding 60bpm then 80bpm. Threatening to break a record 90bpm in the middle of the night. (Real or not real?)

Every drop of fluid disappearing from the body, leaving the mouth, nose, and eyes as barren as a desert under the summer sun. (Real or not real?)

Incoherent sounds escaping from compressed lips at the assault on every body system; trivial compared to the deafening screams echoing through my brain. (Not real or…)

Real enough to rouse Tim beside me, gentle hand pressing against my shoulder. Maintaining physical contact and waiting for my eyes to regain focus. Fetching a glass of water as I mumble a need to swallow. Pressing the obligatory cold cloth to my forehead, the back of my neck to shrink the blood vessels flooding my brain. Holding me close as I shake through the aftermath of a visitation by the synapses of my brain.

“Nothing to worry about,” my neurologist tells me, “just an aural migraine.”

Not for the first time, I contemplate tattooing “Just a migraine” across his forehead.