My Crohnic Life



And waiting and waiting and waiting.

This seems to be all I do these days.

I am a full time patient, holding temporary residence in Limbo.

While this is a place I’ve often dwelled, I’ve been lucky to escape. Time and time again.

But, here I am, unpacking my bags and dusting the shelves that hold all of my past pain, sadness, frustration and grief. This home that I’ve grown to know feels so small, cold and lonely.

As I’m rifling through the messy drawers, I find all of my old receipts. I notice one receipt that is worn, withered, torn, fading and crumpled at the bottom; I know before I even grasp the edges that it reads “Crohn’s Disease” on the other side. This little piece of paper was so naïvely placed in here, over seven years ago, as if it’d be the only one.

I start grasping at the receipts like a magician grasps at the endless train of scarves from his sleeve:

Crohns, Humira, Prednisone, Methotrexate, surgery, opioids, infusions, Remicade, Fibromyalgia, Spondylitis, Arthritis, Myofascial Pain, Amplified Musculoskeletal Pain, POTS, Ehlers-Danlos Syndrome, chronic pain…. the receipts are never ending.

And while I’m sitting in the waiting room of the hospital’s imaging center, I can’t stop thinking about that damn drawer. How much more can it take? How long until these small pieces of paper pile so high the drawer won’t shut?

It’s questions like these that continue to flood my head today during my Gastric Emptying Study, waiting to find out if I have Gastroparesis. Waiting to find out if I’m adding to the receipt drawer or if I’m being left at the drawing board with a dulled down piece of chalk and a depleted spirit… again.

I’ve been waiting for this test since September. I’ve been waiting for this test since the first of many ER visits this fall/winter. I’ve been waiting since my two hospital admissions in between. I’ve been waiting since I visited the Mayo Clinic in January. I’ve been waiting for answers for far too long.

Yet, this isn’t surprising. Waiting is not a foreign concept to chronically ill patients.

We are constantly waiting for referrals, prescription refills, insurance’s approval, appointments, scans, blood work, labs, results, answers, plans, hope.

And today, I’m not just waiting for my study’s results. I’m waiting to get my life back. I’m waiting to feel like myself again. I’m waiting for my distended and bloated belly to shrink. I’m waiting to stop feeling nauseous every day. I’m waiting to see if I have Lyme… if I have SIBO… if I have mold illnesses.

This is the state in which I live; this is limbo, my humble abode. Welcome.

While I hate this home, I know this is a temporary stay. I know I will get the answers that I’m so desperately seeking. And to be clear, when I get them, I won’t be cured. I won’t be healthy. But at least I will have a plan moving forward. I will have a diagnosis to identify with. I will feel validated. You see, the ticket out of limbo is a diagnosis. It’s a plan. Otherwise, you’re stuck.

And though I feel stuck now, I know I’m anything but; I am reminding myself that this is temporary.

But for now, I have to wait.

While this reality is mostly frustrating, it’s also incredibly humbling… for my patience has come from being a patient.

All of my love.