I’ve been receiving intravenous Remicade treatment for the last five and a half years, and it’s sent my ulcerative colitis into remission. It’s allowed me to pursue a college career, and helped me get my life back. Visits to the emergency room are long gone, but not long forgotten.
Every eight weeks, I find myself at the John T. Mather Memorial Hospital Infusion Center in Port Jefferson, where I sit in a comfy, reclining green chair for about three hours. An I.V. is snuggled into a vein in my hand or arm, and every 15 minutes, the beep of the machine on my left tells the nurse it’s time to increase the flow of the drug.
“See you in eight weeks,” I say after the infusion is complete, feeling like I’m living in an alternate version of “Groundhog Day.”
It always leaves me with a feeling that something’s missing — as if I should be better, but I’m not… not really. These infusions serve as a reminder of how sick I could be, and seeing my father battle his Crohn’s-colitis for the last 10 years puts an added weight on my shoulders that I will never be able to lift. I can’t even put into words the amount of immeasurable sadness that brings me.
It hits me even harder once he picks me up from the center after my treatment how different my family’s life would be if he could benefit from this drug. When he got sick a decade ago, he was too far gone to reap Remicade’s benefits. I guess I lucked out.
For a week after my infusions, I deal with side effects that aren’t necessarily listed as primary. I’m talking about depression and mood swings, or the flighty feeling I have days afterward. There’s also excessive fatigue and a lack of concentration on days where it’s sorely needed.
Is it better than being sick? Do I even have to answer that? Is it better than dealing with cramps, and bleeding when going to the bathroom? The restlessness? Trying to fall asleep after being in the bathroom for 30 minutes, only to lay awake in pain for the same amount of time afterward – feeling as if someone stabbed you in the gut? Yeah, it’s a lot better.
A few infusions ago, a nurse asked me how I feel after getting my treatment.
“Some people say they feel tired or have some pain,” she said. I agreed with what others had told her.
“I also get really sad,” I said. “For seemingly no reason. I deal with depression, too, so I find it being worse after my infusions.”
“How long,” she asked.
To be honest, I’m not sure anymore.
However, despite everything I’ve just said, every stabbing pain and sinking feeling and hour after hour spent in the hospital, that treatment is what makes my life liveable. I’m furious about the Justice Department deeming the Affordable Care Act’s mandate requiring people to buy health insurance unconstitutional.
Twenty states are suing over the individual mandate. If the Supreme Court rules the individual mandate unconstitutional later this year, people with pre-existing conditions like mine could be denied coverage in the near future. Fifty million Americans, nearly a sixth of the U.S. population, could lose part or all of their medical coverage, or face higher premiums that could cast people just like my father and
This will hurt people I know and people you know. Don’t turn a blind eye to this.