I'm Ro. 

I’m a 30 year young woman with Crohn’s Disease. I have felt trapped by the burden of a chronic illness and the medical intervention it requires. This is my journey to taking back my life through dramatic change in lifestyle, location, and loving myself.

My Last Remicade Infusion

My Last Remicade Infusion

I refused Remicade infusion therapy initially. Remicade is a medication used to treat Crohn's disease, ulcerative colitis and rheumatoid arthritis. Remicade helps decrease inflammation associated with inflammatory bowel disease. The medicine is hooked into the user's arm via an IV drip and administered by a nurse every 6-8 weeks. The whole process takes about four hours. The doctor said it takes two.  

I agreed to take Humira in order to avoid the drastic infusion option. Humira is an epi pen like injection that requires the user to puncture their thigh every two weeks. I spent a full year diligently stabbing myself in the legs, rotating between the two as instructed, before the Gastroenterologist said I was still not responding and would need to move onto the next therapy. “Humira has a greater chance of user error as it is self-administered,” my doctor explained. Unsurprisingly, patients have a tendency to flinch when stabbing themselves in their appendages. I recall on a few occasions flinching at the last moment, watching the tiny drop of medicine at the tip of the needle slither down my thigh. Remicade would have to work; professionally administered and jackhammered right into your bloodstream.

The thought of an infusion-center terrified me; visions of cadavers on dialysis and bald women in chemotherapy chairs. Fortunately, in my health insurance company’s constant effort to save themselves money, they created an at home administering program and a certified nurse would come hook me up right in the comfort of my little one bedroom apartment.

My first infusion was scheduled on a Sunday afternoon. It came at a time when I was grieving the death of a close friend and grieving the death of a close relationship. I could barely leave the house. My apartment usually messy with comfort of aloneness, was immaculately cleaned prepared for the unusual prospect of company. My parents came. My mother carrying tupperwares of sweet oven roasted chicken and potatoes. My father stoically lumbering up my narrow stairs, uncomfortably crammed on my small couch. A few of my friends came with infectious excitement that for a moment made me forget why we were gathering.  That was the first time. The second time, third time, fourth time, it was me, my nurse, and usually my parents. We’d sit in silence and listen to the whirr of the mechanical infusion drip. A few times when my veins blew out and the nurse had to find a new one, I’d squirm under my mother’s gaze as she’d watch, eyebrows lifted anxiously, as silent tears would stream down my cheeks. One time my veins were so uncooperative, I went into the other room to do jumping jacks to get my heart rate back up.

On my second to last infusion I had a reaction. I scheduled it early Friday morning since I was going on a trip that evening. My sister came that day, thankfully. My nurse, my sister, and I sat together making small talk, drowning out the churning of the infusion machine. I felt a cold rush in the back of my throat and a sudden strange euphoria. I ignored it. I was, as always, trying to get the whole stupid thing over with. Next my hands felt tingly and my vein at the injection site looked bloated and purple. “I feel weird...” was all I could get out before my tongue did not seem to work anymore and everything around me faded into the background. “Call 911!” my nurse yelled to my sister, “Are you serious?!” she said in disbelief. “Yes, she’s having an allergic reaction! Oh Lord! Oh Lord!” My nurse clamored over to me frantically turning off the machine, rummaging through the medical supplies box that came with the Remicade, finding two Benadryl which she popped in my mouth immediately.

I made eye contact with my sister. The look of sheer terror in her face sent me into panic, the whites of her eyes widely visible. Everything disappeared again and I felt for the first time in my life the truest fear I have ever known, that this was the moment I would die; in a heap on my apartment floor, my sister wailing beside me. The closest I have ever come to this horrible yet somehow exhilarating feeling was bungee jumping, the difference of course was then the feeling lasted a few seconds and I bounced back to safety once the cord caught me. Here I had the raw awakening terror of praying “please don’t let me die.”

And just like that the moment passed, the Benadryl had calmed me, and I slowly felt the panic lifting.

The ambulance arrived and my sister ran outside to guide them into my parking lot. My small formerly quiet apartment was swarming with EMTs and firefighters. I made note of how handsome they were and immediately felt stupid for doing so. I was suddenly very aware that I was wearing a thin house dress without a bra. The very kind and patient EMTs asked me simple questions about what happened and who I was, and to their satisfaction I was able to answer.

I refused the ambulance as the Benadryl seemed to have taken affect and the expense of an emergency room visit was more than I could handle. Eventually, they all filed out of my apartment leaving my sister, nurse, and I alone in the quiet again.

My father spoke with my doctor (instead of, you know, me) and he advised that I finish the infusion. He said stopping now could make for a worse reaction and I needed to continue the therapy or it would essentially undo whatever good it had done up to that point.

I shit you not, I finished it. A few moments earlier I had seen God and yet, high on two Benadryl, I laid back down on the couch, out stretched my left arm, my right now bruised purple from the injection site. My gentle nurse knelt down before me, wiped my arm with an alcohol swab, and went about finding a vein.

That night I went to New York with my best friends and sang karaoke in a Brooklyn bar until 6AM.   

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Across Country Route

Across Country Route

You May Ask Yourself Well How Did I Get Here?

You May Ask Yourself Well How Did I Get Here?