The carpet in the small office is a dirty white. It is matted and heavily worn especially the section just before the computer desk; a hulking behemoth too large for the space and bedecked with garish accessories and a looming hutch. Seated to either side of it are mismatched filing cabinets their tops overrun with papers and office equipment. Everything here could stand a good dusting. Especially my own body lying on the floor next
I have a really hard time accepting the fact that I’ll never be the “old me”. I mean, let’s face it, the old me had several more feet of intestines & far fewer scars. Many of my chronically ill friends express this same sentiment. I’m working on a longer piece titled The Way Back. This very different & much shorter version popped into my head the other day during my first run/walk since last April.
For starters, the following is parody. I don’t want Tina Fey suing me. I took some of the more popular lines from the movie Mean Girls, and with the help of a few friends, rewrote them with an IBD slant. Gretchen: “You are such a distal lumen.” Regina: “Gretchen, stop trying to make Distal Lumen happen!” Karen: “Wanna do something fun? Wanna go to taco bell?” Regina: “I can’t go to taco bell,
(Night time is the worst when in the hospital. Lack of sleep doesn’t help. The constant beeping of machines, the interruptions from the “hospital vampires” who always show up around 4 am to draw blood, none of it is very conducive for a restful sleep. One time I awoke from a very fitful sleep and swore there was someone sitting in the chair at the end of my bed. Turns out it was just a
There are nights in the hospital when you don’t know what to do. When your brain won’t shut off. How nice it would be if you could just remove your head. Leave it at the edge of the bed with the dirty linen and send it out for a good cleaning. But the skull which houses your soul, the spine that connects you to your body, all the blood and bones and skin that assemble
I think I would go back. Maybe to my eleven year old self. Not with “all that I know now” and all that crap. Because honestly, what the hell do I know? But I would be that awkward kid again who spent too much time in his bedroom reading comic books. Too much time in the swimming pool swimming laps. Everything would still play out as it has. But it would be nice. So nice.
In my dream last night I destroyed the moon and then feasted on the rings of saturn. And my father tumbles now like a stone within my ribs. I shall never return here again.
They help you. The People Who Stare at You. When you have to go to the bathroom, for example. Your wife helps navigate your IV Tree around the furniture. You didn’t know that a fish could walk? Even a fish with so many lines stuck in the crook of its gills. She stands outside the door listening. Makes sure you don’t need anything. She piles blankets up on the radiator. The radiator right next to
Part VI In one of your dreams “in-between” you are a fish again. Stuck in the mud of the wide, cold river. Laid up on your side. Your one eye peers deep into the muck seeing only brown. The other eye stares up into the blue sky. It watches as hooks and lines sail toward you. You feel some of them land on your body. Trying to take hold. Trying to latch onto you.
There is concern about your weight. You lost eleven pounds in ten days. When admitted to the hospital you tipped the scales at a whopping 120 pounds. After yet another colonoscopy they come back with the dreaded “S” word. Surgery. It is highly recommended you have your colon removed. At the moment it is not an “emergency” situation but they clearly inform you that if you leave the hospital and the medications that are barely helping you hang
Part II Together you sit quietly and listen to the cacophony that is the hospital: Machines in every corner of the room that beep incessantly; speaking to no one. The squeak, squeak, squeak of the nurses’ white shoes on the polished floors as they walk down the wing attending to someone else. Other people stuffed uncomfortably into ill-fitting gowns that reveal to much of your backsides and tiny hospital rooms with nothing but a
Part I They come in shifts. Mostly during the day. Sometimes at night. When you wake they are there at the foot of your hospital bed. Crammed into those uncomfortable armchairs with the worn finish and tattered, stained fabric. You think to yourself that even a death row inmate receiving his injection should not have to sit in such ugly chairs. Or, they stand next to the window looking out onto a freedom they could
“Two point eight miles to go, Ryan.” my coach, Eric, calls out from atop his kayak. He steadies himself using his paddle to counteract the waves that keep coming at both of us from behind. The waves are frequent, huge and unpredictable. Unpredictable because of the pitch blackness of night that has descended upon us. Honestly I have no idea what time it is. I just know the sun went down a long time
(Written in the bathroom of FIVE GUYS during lunch with my son.) FIVE YEARS. I turn to glance into the mirror, Two years a ghost. Curled up in the fetal position on my couch. A puddle of shadows. Just vapor floating between the walls of my home. Two years haunting my own life. Three years since they wheeled me out of an operating room with fewer parts than when I had gone in. Five
I draw back my window shade and happily watch our garbage man toss into the back of his giant truck the six bags of crud that I had, last evening, dragged to the curb. There is something else out there on my lawn though. I know what it is. The garbage man ignores it. I do too, and turn my attention instead to the lone cloud working away across this blue sky. I was
and now all of the cosmos swirls here beneath my skin… Okay, not really. But you have to admit my arm kind of looks like one of those deep space pictures that NASA takes of the universe. What really happened, according to the folks at the ER, is a venous injury. Just before my scope last Friday the nurses administered medication through my I.V. At that exact moment I felt a horrible burning sensation
I’ve been sort of trepidatious since my scope last Friday. Overall my Doctor was quite pleased with what he saw. Appears Remicade® is working its magic and I have shown signs of healing in the areas that just three short months ago weren’t looking all that great. Of course it wasn’t all unicorns frolicking on magic rainbows… the inflammation has shifted, as is typical with Crohn’s, and is now targeting a different region. So, we
“What I wouldn’t give for only one night / A little relief in sight…” Every Little Kiss by Bruce Hornsby & The Range Dear Remicade …. well, I am still waiting. Waiting for my super powers. Buttttttt …… Last night I did actually sleep through the ENTIRE night. I didn’t get up once. So, thank you for that. Yesterday was my third dose. I am now on the regular every 8 weeks schedule. I just
If you look at the top of this page you will see a new link titled CALMOSEPTINE. There you will find a story about how I was first introduced to this product. Calmoseptine has graciously agreed to advertise on this blog. I promise that only products that I personally use and trust will be advertisers on this blog. Don’t worry, you won’t find ads for Canadian pharmacies promising to supply you with every single prescription
So, February 28th is my start date for Remicade® (Infliximab). I’m pretty excited! But probably not for the obvious reason (that being it hopefully will stop the inflammation and quiet my Crohn’s a bit). No, I’m excited because I have another chance to develop super powers. I was pretty bummed it didn’t happen with Humira®. Cimzia was a bust as well. But Remicade. That’s the ticket. I mean this stuff so mirrors the super-serums from my
(Or “I’m getting an F in Chronic Illness”) Back in my school days I wasn’t the sharpest tool in the shed. Don’t get me wrong, I wasn’t a horrible student by any means (unless it involved math – couldn’t stand math!) but I also wasn’t “Mister 4.0”. Fast forward to my adult life and my Crohn’s diagnosis and I sort of feel like I am back in school. Only this time around I am
“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says “Go to sleep, darlings, till the summer comes again.”