Someday This Will Be Funny: An Intro to My Chronic Illness

My emergency room happy place…

“I was in the ER for the second time in two days, my butt cheeks pulled apart and taped to the railings,” I explained to a friend. “The surgeon said there were areas she would not be able to numb completely, which is exactly what you want to hear from someone with a scalpel.”

I could hear the horror reaching through the phone, her complicated emotions restraining her laughter as she gasped instead. 

“Afterwards, the doctor told me I was in the top five patients she’s ever had for pain tolerance, so I guess at least there’s that? I wonder if I can put it on my LinkedIn,” I joked. Finally, a chuckle rang out on the other end of the phone and I felt a little less like curling into a ball on the floor and melting into a puddle of despair. 

“I just kept whispering to myself, someday this will be funny!” 

My complicated medical circus began when I was a wee child, yet it would be years before I would fully understand how far my body would go to constantly outdo itself. On the upside, I can silence an entire dinner party with a comment like, “But who HASN’T peed their pants holding in a fart at the theatre, you know?” 

I was diagnosed with a rare condition called Hereditary Angioedema when I was eight. Hereditary Angioedema (HAE) is a rare inherited disorder characterized by recurrent episodes of rapid swelling of tissues in the hands, feet, limbs, face, intestinal tract, or airway. This disease is so rare, in fact, that patients have to administer their own IV medication at home. Since I am not a medical professional, this procedure is less like a dramatic television moment and more like stand-up comedy at the state fair, hit or miss. Mostly miss. Cue the black and blue arms and moms at elementary school drop-off asking me if I recently played paintball. 

Thanks to this amazing disease I have had my ears swell up like a cartoon character, been forced to enjoy the winter breeze in flip flops when no other shoes will accommodate my feet, and there was once a magical evening when I pooped my pants adjacent to a hot firefighter while he was giving me an IV on my bathroom floor. 

Yep, I take “hot girl tummy ache” all the way to “swamp ogre digestive disaster” in the blink of an eye. You will never see me with a tiny purse containing only my phone and a designer lip gloss because it would not even begin to accommodate my EpiPen, injections, pills, and potions. I am a traveling pharmacy with a Google degree in medicine who always has a little bit of everything because you never know when you’ll be instantly dizzy or flushed with hives at a sports show. 

As if this nightmare wasn’t enough to contend with, I added Hashimoto’s thyroid disease to the roster in my twenties after a long stretch of falling asleep pretty much everywhere mid-conversation. I once had a date to a dinner party where we began the evening on the couch with charcuterie and a glass of wine. Hours later I woke up in the exact position I had been sitting in to find everyone else in the dining room finishing up the meal. I had no memory of falling asleep, and luckily no one drew penises on my forehead with a sharpie and posted them on social media…because there wasn’t social media! AWWW YEAH! I’m old. 

After having two children and finally getting to a point where I felt like I had my head above water, I began CrossFitting and became one of those people who drank bone broth in a coffee cup and did mud runs. I was also the immature dork who laughed every time our coach said “snatch,” but regardless of this I had a great group of fit friends, and for the first time in forever briefly felt like a whole human. 

Then one day I went to lift a barbell and discovered my hands didn’t quite work the way they should. Every inch of my fingers hurt and a shooting pain and total lack of strength had seized my joints. Cutting soft substances like butter or melon was excruciating and I was struggling to do everyday activities. I went to acupuncture, soaked my hands in ice baths, took a break from lifting weights, and did everything the internet told me to. Finally, I visited a rheumatologist and found out I was now adding Lupus, Rheumatoid Arthritis, Sjogren’s, and Fibromyalgia to my fun health party. 

A steroid shot, new medications, and five doctors later I was finally finding my way through it. I said goodbye to my love of push-ups and other “hand-related sports” (I read this on one of my doctor papers once), as well as my life as a hairstylist in favor of having use of my hands to do things like eat, raise my children, and put on pants by myself. 

With each new ailment, my self-esteem took a punch to the throat as I packed on additional pounds from steroids and stared into the abyss wondering why the universe hated me so much. I was once consoled with “God only gives his toughest challenges to his strongest warriors” or some nonsense like that, to which I replied, “Well then I’d like to chat with your God because he clearly doesn’t know me very well.” 

The great news was that now I had a new game in my life called “Something Is Wrong, Which Disease Is It?” which would prove to provide hours and hours of entertainment. Intense stomach pain with a butterfly rash on my face and a side of joint pain? Who’s to say? Chained to the toilet with a low-grade fever, pounding headache, and a swollen foot? Roll the dice! 

Now, with my most recent trip to the ER, I am facing a new issue that is pushing the limits of my patience. I can often find a small entertaining ray of sunshine to cling to, even in the darkest of days, but this latest ailment is a doozy. After the mini-surgery, I was informed there would be a larger, more complicated surgery to come a few weeks down the line. I wondered if I had the life force to endure not only the physical nightmare but the embarrassment of explaining to my coworkers what exactly was happening with my butt.

Just as the tears began to fill my eyes, I looked to the hallway and found an older man with the back of his gown wide open to the breeze as he sipped from a tiny apple juice container. Raising his hands to the sky he yelled, “This sucks! I don’t want to be here anymore!” 

Same, friend. Same. 

I know exactly how you feel. 

Wait, why didn’t I get any apple juice?