Gray's Anatomy of Invisible Illness (Part 2)

Continued from Last Week.

Neurogenic Vasovagal Syncope

(nur-uh-JEH-nuhk vay-zoh-VAH-GUL sing-KUH-PEE) Occurs when the body overreacts to certain triggers, such as the sight of blood or extreme emotional distress. Heart rate and blood pressure drop, causing a brief loss of consciousness.

The vagus nerves are the largest cranial nerves in the body, tracking from the brainstem into the abdomen, one on either side. They’re tasked with controlling the parasympathetic nervous system (also known as your body’s operating system during status quo). Evolution also decided the fuckers deserved input on reflexes, giving them insight into the SYMPATHETIC nervous system (when your lizard brain decides to go into fight-or-flight mode).

The doctor who discovered them decided “wandering” was an apt description for how they meandered through the body. Turns out the fibers also decided the word worked for how they wanted to operate.

At least in my body.

Every few months, my vagus nerves conspire to sabotage the system - for funsies (if there’s a trigger, they’re keeping it under wraps). In an elaborately choreographed procession, they start flipping switches. The GI tract goes first, swirling intense nausea for no speakable reason.

If I overlook the warning (always a possibility, given my stomach’s history), they proceed to the circulatory system. Did you know you can FEEL your blood pressure drop? One moment I have legs, and the next, I have limp strands of spaghetti. It’s a unique phenomenon. (Legs. POOF! No legs! Best magic trick in the book)

That’s the last warning before the vagus nerves go after the heart. Find a chair, start coughing, and start an internal argument with my nervous system or pay the price. The reliable organ in the chest follows the leeching pressure, slowing further and further. A hand pressed between my breasts confirms there’s nothing happening. (Okay, so SOMETHING is, but it’s not worth writing home about)

All told, it’s a solid five-minute process before WHAM! Face-down on the floor.

And—if I’m lucky—no laughing witnesses. (Want to take odds on how often that happens?)

Ovarian Cyst

(ow-VEH-ree-uhn SIST) Fluid-filled sacs on the surface of or within the ovary.

I was never meant to have children.

Coming to that conclusion took years of physical and emotional pain.

First, there was the decision of whether I should wait to find someone who wasn’t a complete and utter asshole. No problem—not like there’s a shortage of men who fit that description.

Second, I had to battle a reproductive system determined to turn on itself. How was I supposed to carry a baby for nine months when getting through ten days of a period took every bit of my strength and resolve? Posters on gynecology office walls seemed to suggest a developing fetus was larger than a uterus shedding blood. (I wasn’t entirely convinced since I could drop two pounds in weight each month)

Then the medical system forced me to wait ONE MONTH before my hysterectomy procedure. It was a giant “ARE YOU SURE?” hanging in the air. Even the insurance company signed off before then, happy to do away with my constant trips to the ER. But medicine looked at my “reproductive age” and shook its head. I needed to meditate on my decision for a month before they’d take my uterus.

As if all of that humiliation weren’t enough, my body insisted on slamming the coffin on my birthing hopes and dreams. The “simple” procedure of producing an egg every month required something extra.

My ovaries felt inspired.

Or they missed the company of my uterus and fallopian tubes.

No part of my reproductive system wanted to remain in my body. The universe flipped me the bird and laughed in my face. “NO CHILDREN FOR YOU!” The message came through loud and clear.

A box of assorted cats and kittens delivered to my doorstep would have been appreciated more.

Peptic Ulcer

(PEP-tuhk UHL-sr) Open sores develop on the lining of the stomach or upper portion of the small intestine.

Stress will kill you. Isn’t that what everyone likes to say?

Stress (not fear, Frank Herbert got it wrong) is the mind-killer. It robs you of common sense, resulting in endless anxiety and reckless behavior cycles. Your body exists in a permanent state of heightened awareness, flooding veins and arteries with excess cortisone. The adrenal glands step up an insane production quota while the remainder of your body screams in protest, swimming in hormones it can’t process.

And everyone around you suggests you take a walk in the sun or spend an hour breathing deeply to calm the fuck down.

As if the body doesn’t adapt to that sludge of stress swimming through the acid in your stomach. Carving out a comfortable tiny home in a pocket to fester and grow. Biding its time until you find a spare moment to sit down and engage in ONE yoga session.

So it can open the door to every “natural” microorganism in your system to throw a rave.

And someone in your life can comment that you wouldn’t be in so much pain if you weren’t always stressed.

Queasy

(KWEE-zee) Suffering from nausea.

Eat food. (Feel sick)

Don’t eat food. (Get nauseous)

Eat smaller amounts of food. (Throw up)

Eat larger amounts of food. (Swear you see your stomach come up with everything else)

Drink liquids. (Even water produces instant nausea)

Carefully craft a precise diet based on the recommendations of board-certified nutritionists, designed to cater to the long list of conditions you battle. (Get through one meal and cheer that you feel better. Eat next meal and feel sick)

Slap together a random assemblage of food based on nonsense cobbled together from a brief internet search of hopeful keywords. (Get nauseous after two bites)

Skim message boards looking for insight from fellow patients, pulling out recipe cards and grocery lists in a futile attempt to inject nutrients into the body. (Spend the night sleeping beside the toilet)

Start screaming at the idiocy of your GI system, go on a two-hour rant about the so-called necessity of food, glare at your husband every time he mentions the need to eat, then consume a sleeve of crackers and two chocolate chip cookies. (Don’t ask)

Stop eating for the weekend. (Request an anti-nausea prescription from doctor)

Repeat.

Raynaud’s Disease

(ray-NOSE duh-ZEEZ) Condition resulting in portions of the body—particularly fingers and toes—feeling numb and cold in response to low temperatures and stress. Arterioles supplying blood to the skin narrow, limiting blood flow to affected areas.

I’ve never forgiven my father for calling 9-1-1 the morning I passed out three times. (Do NOT recommend)

He maintains the polite (lie) stance that he DID ask for permission—while I was temporarily unconscious on the floor. I insist no response IS a response: in the NEGATIVE. Particularly as everyone related to me understands how I feel about ER trips.

Waking up in the middle of the hallway was shocking enough. Getting helped to my feet and being informed the ambulance was on the way was NOT what my system needed. (I’d called him because I wanted HELP. How was calling 9-1-1 HELPING?)

The man was entirely unsuitable for assistance. He refused to let me go anywhere unaccompanied, even insisting on bringing my sweats to me. (I did manage to win the argument that NO ONE was going to see me in my pajamas) And then the person who taught me to be a miserable patient had the nerve to tell me to behave as paramedics swarmed me.

There is nothing like a siren-wailing ambulance in front of your house to pique the neighbors’ interest.

There’s nothing quite like bluish-white fingers and toes to panic first responders. The men struggled to find a readable blood pressure, switched the pulse oximeter from finger to finger. Dad and I had already found a miserable number for my blood pressure, but I still balked at the oxygen prongs they shoved toward my nose.

Finally, a voice of reason emerged from the chaos. (I absolutely would NOT allow them to put me on a gurney. I could walk. And if my father made one more joke about passing out on the front steps, I was disinheriting him)

“Do you have Raynaud’s?” a female EMT asked, examining my hand with a critical eye.

I nodded, latching onto the word as a lifeline. (You apparently need functional brain cells to retain a working vocabulary)

She laughed. “You’ll never get a reading on her. She’s vaso’d down.”

Hope brimmed. “So I don’t have to go to the hospital?”

“Oh, you’re still going, Honey. You passed out three times and have no blood pressure.” She winked. “Nice try, though.”

Sleep Apnea

(sleep AP-nee-uh) The cessation of breathing during sleep. The throat muscles intermittently relax, blocking the airway. A common sign of sleep apnea is snoring.

I don’t snore. The only time anyone has heard me snore was during a severe cold infection when my head was so stuffed with mucus that I struggled to breathe when awake. Even before my ENT blew my sinus cavity open, correcting a disaster of anatomical structures (lying dormant and screwed up since birth), I didn’t snore.

But everyone around me snores.

Like allergy-riddled bears. In the middle of a chainsaw competition. At a tractor demolition.

Yet I’M the one with sleep apnea.

Asymmetrical and enlarged tonsils crowd into the narrow space of my throat, collapsing my airway into the diameter of a squashed coffee stirrer. And that’s compounded by an overbite orthodontics corrected by shoving my jaw BACKWARDS, robbing space from my already shriveled airway. It’s an anatomical recipe for disaster.

And the perfect humiliation at anesthetic interviews.

Eyebrows arch in surprise each time I check the “apnea” box. I don’t resemble the stereotypical patient choking on their tongue every night. But there’s nowhere for the damn thing to GO when I drop my neck into an unnatural angle on my pile of pillows.

Because I can’t sleep like a normal human being.

Not that I DO sleep. My body panics the second the oxygen levels drop 0.001%, jolting me awake to deal with the impending death crisis. That IT created.

Temporomandibular Joint (TMJ) Disorder

(tem-puh-roe-man-DIB-u-lur JOYNT dis-OR-dr) Pain in the area of the muscles that control jaw movement. May be due to genetics, arthritis, jaw injury, or bruxism (grinding the teeth).

I think everyone should experience a root canal at least once.

The surprising delight of an orthodontist approaching your mouth with a metal syringe (why do dental professionals have an abhorrence for disposable tools?) capped by a 10-inch long needle. Repeated stabbing into gum and cheek tissue as said medical professional makes the same comment repeatedly, “You can still feel that?” (If you’re going to call it a cocktail, it should at least come with a festive umbrella)

Enough cotton packing wedged into and around the back of the throat to transform you into a chipmunk (casually observed in the overhead mirror before the assistant repositions it out of your view). A firm block of plastic shoved into the opposite corner of your jaw to (supposedly) ease the pressure on your jaw muscles as your mouth stays open for endless hours.

The reality that, despite headphones playing an insipid radio station of the same five Christmas songs, you can hear everything the doctor and nurse say, catching words like “necrosis” and “cavitation” punctuating their conversation. And, of course, the omnipresent sound of a high-pitched drill IN YOUR MOUTH obliterating the soft dentin of your cracked tooth.

All because you pit down on the wrong apple slice.

(No need to give credit to the years of unceasing clenched teeth)

Uterine Fibroids

(YOO-tr-uhn FAI-broydz) Noncancerous growths in or on the uterus ranging in size from “seedlings” (undetectable by the human eye) to masses bulky enough to distort and enlarge the uterus. Also known as leiomyomas or myomas.

“You’re going to regret this decision.” The woman wasn’t much as friends went, but she felt entitled to weigh in with her opinion when she heard me admit I was having a hysterectomy. Considering the veterinary practice I was working at suffered a baby boom shortly afterward, with everyone forced into extra shifts to cover overlapping maternity leaves, I agreed—but only for that reason.

Okay, I regretted the recovery process. No one willingly signs up for a urinary catheter. And my doctor refused to let me skip the overnight hospitalization, even when I promised to go straight home and rest.

But once my body stopped hating me for excising an organ, I exhaled a breath of relief.

Gone were the crippling pains that incapacitated me every month. Masses crowding the outside AND inside of my uterus, joining the party of torment my reproductive system orchestrated shortly after I reached maturity. Metaphorically overnight, the amount of ibuprofen I consumed dropped. I no longer needed to hassle my parents to buy me the Costco bottles.

And when everyone else started griping about their periods and needed to make rounds begging for tampons (why they never came prepared mystified me even before my procedure), I settled into a position of superiority. I was free of such entanglements. After decades of embarrassment and misery, I had achieved a release.

Where was that regret I was supposed to feel?

Vertigo

(VUR-tuh-gow) A false sense that you or your surroundings are spinning or moving.

Bracing my hands against the table, afraid I’m about to pitch myself off the seat. (“The RV is moving—real or not real?”)

Throwing a hand out to catch myself against the wall, the floor rolling under my feet. (“The house is flipping—real or not real?”)

Squinting at the lighthouse in the distance, watching the pier shift with the waves. Planting my feet further apart to counter the incoming tide as people strolled past without a second thought. (“The pier is rocking—real or not real?”)

Dropping to my knees in front of an aquarium, making a frantic grab for the camera around my neck to keep it from slamming the glass. (“The building just shifted—real or not real?”)

Grabbing Tim’s arm as trees twisted branches overhead, caving in the canopy. (“The forest is spinning—real or not real?”)

Knuckles turning white on the shopping cart handle, my feet struggling to navigate a floor as bubbled as the surface of an Escher print. (“The floor is rolling—real or not real?”)

Winding my fingers in the blankets, head pressed against the pillows, and eyes alternating between open and closed; neither making any difference. (“The bed is tilting—real or not real?”)

Hanging up the phone after a receptionist informed me my neurologist couldn’t see me for three months. (“I’m crazy, and this is just my imagination—real or not real?”)

Withdrawal

(wuhth-DRAAL) Form of dependence that develops after long-term use of pain medications.

Honesty is not the best policy.

I spent six months with fentanyl patches adhered to my body while I struggled to convince doctors to remove my gall bladder. The synthetic opioid left permanent scarring on my neurons. And I loathed it. When they attempted to write me an additional script at discharge, I tore it up in front of them. I refused to remain a slave to a drug that had robbed me of health for so long. (Admittedly, the medical profession remained at fault, but I was constrained to symbolic acts)

My body pitched a fit.

I lost sleep as muscles attempted to stretch further than an abused Stretch Armstrong doll. My boyfriend at the time left our room in disgust, complaining at my constant twisting and turning and the number of times I woke him with my crying. (A real gem—it’s such a wonder we’re no longer together) During the day, my brain turned the consistency of sludge and mud. I struggled to focus on anything requiring more input than breathing. (And even that took some effort)

A doctor prescribed suboxone to bridge the gap between the fentanyl and my cold-turkey approach.

It made a difference, allowing me to catch a few hours of sleep and regain coherency. I still felt the pain of my post-op recovery, but I remained stubborn in my acceptance of that.

When my mentor in my practicum cornered me over concerns about my dozing off in the morning, I told the truth. I held no shame for my battle with the war within my system. Six months of agony would not let go overnight. (Even if my anger had thought it might)

She reported me to the head of the program as a drug addict. I was banned until I could produce a doctor’s note reassuring everyone I was of sound mind and body for the program. (A tall order)

My doctor had just left on his summer vacation. His nurse forged the signature.

Lesson communicated, loud and clear: The world prefers a lie.

Xerosis (Dry Skin)

(zr-OW-suhs) Skin that looks or feels rough, itchy, flaky, or scaly. May be caused by cold, dry weather, sun damage, harsh soaps, or overbathing.

Winter is the bane of my existence.

The sodden blanket of humidity that suffocates the South for the remainder of the year mysteriously disappears, leaving bone-dry air that sucks up every morsel of moisture. Spend five seconds outdoors, and you feel water evaporating from your pores. It’s physically impossible to take in enough fluids to replace the loss.

The lines in my hands turn into cracks. Every tiny fissure becomes a chasm depleted of life-giving water. Look close enough, and you’ll see a resemblance to the Grand Canyon. Or possibly the surface of the Moon. (Depends on the day)

And, courtesy of our new pandemic status, things have only worsened.

All the built-in moisture beads and conditioners in the world DON’T make a difference. I have to become an actual GIRL during the year’s colder months.

Coconut and honey on my feet. Milk and lanolin on my hands. Lotions, gels, balms. (And the ubiquitous chapsticks in every room of the house for my lips) I spend forever in stores reading labels and directions, attempting to learn in a few minutes what most women seem to know by nature.

All so I won’t reach for a cheese grater in the middle of the night.

Yeast Infection

(YEEST uhn-FEK-shn) Fungal infection causing irritation, discharge, and intense itching.

I never finished prescribed courses of antibiotics. And I was smart enough, with enough background in medicine, to know it was a terrible idea. (It didn’t stop me, but I feel it’s worthwhile to share the knowledge)

My body enjoys getting me into situations that require the highest level antibiotics. Broad-spectrum behemoths designed to wipe out every known microorganism in their path, including the usual microbiome keeping the system operating as close to normal as possible. My GI tract only tolerates the scorched earth treatment for a few days (MAX) before it rebels. And that’s usually sufficient for everything ELSE in my body to decide to throw in their lot.

For the gentlemen of the world, women don’t enjoy yeast infections. There’s no equivalent in your plumbing, so suffice it to say we’d rather rip out our vaginas than put up with the pure hell that results when the natural flora and fauna of THAT system goes out of whack. And this nonsense of “7-day treatment” is bullshit.

Who wants to wait SEVEN DAYS to feel like a human being again?

I’ll pass.

It’s why I call it quits the moment my stomach starts feeling iffy. Well, that’s how it worked before I got married. (Things are so much easier when you don’t have someone who cares about you all the time) Now I have to (grudgingly) have frank discussions with my doctors about the situation. And they either give me a script for Diflucan at the same time, or we get to decide precisely how bad they feel the potential infection is.

Really, it’s going to be 50:50 on whether it kills me.

Zoster (Shingles)

(ZAA-str) Viral infection that causes a painful rash. May occur anywhere on the body but most often appears as a single stripe around the left or right side of the torso. Caused by the same virus that produces chickenpox and lies inactive in nerve tissue near the spinal cord and brain.

Shingles came for me the first week of my first job out of college.

I had always believed nothing would feel worse than the week I endured chickenpox. Mom braiding my hair into Princess Lei buns so I couldn’t attack the lesions on my head with a brush. Oven mitts duct taped around my hands to prevent the incessant need to scratch every part of my body. Skin rendered permanently pink by Calamine Lotion baths. And endless hours on the couch watching “The Price is Right” and soap operas. (How did people have so many evil twins?)

But when that rash started creeping over my side, I realized the nightmare had a sequel.

No itching this time, only the worst sensation in the world—a third-degree burn left to rot under the sun. The red flesh crept along my ribs, an invasion worthy of a horror movie. There wasn’t a fabric invented that felt comfortable against the insane prickling heat.

And I was trapped within a strict business attire wardrobe.

“Stress only makes things worse,” my mother warned me.

So did the lack of medical insurance, hamstringing any ability to seek a prescription ointment or lotion. I gritted my teeth and slathered Neosporin on every morning. (The perfect scent to convince a new boss of your professionalism) During my lunch break, I sat in the bathroom with an ice pack against my side, deciding cold plus heat would equal relief. (It didn’t work, but it DID leave wet spots on my dress)

The rash spread, crawling up my chest. Because nothing says, “I’m happy to be a part of this office,” like red, scaly flesh in your cleavage. I made one attempt to cover the unsightly offense with makeup. Just one. (Pancake makeup couldn’t have obscured the damn mess)

When it finally ebbed, I sprawled across my bed in relief. But a nagging reminder that the virus could resurface anchored in my mind.

Revenge of the Stress constantly lurking in my nervous system, waiting to strike again. Hefty punishment for enduring childhood hell.