8.09.2017

In The Name of Adequate Pain Control

Back in May, I booked a flight to Alaska and told my friend Samantha I was coming for her and her mountainous stomping grounds. That was before my summer went to shit.

I've been hospitalized three times in the past three months. My pain has been more or less out of control for three months. And though my systemic autoimmune arthritis appears to be "stable" in terms of keeping further joint/organ destruction at bay (thanks to Methotrexate and Remicade), I've still been fighting pain like hell.

Contrary to what the media represents, patients have a love/hate relationship with those things called opioids, too. Medical professionals aren't the only ones with valid concerns. For me, it's Percocet in particular. This medication has helped me to participate in life when nothing else could and I'm truly thankful for it. On the other hand, I'm sick and tired of defending myself and my responsible use of it as a chronic pain patient. Anything for a good headline though, right?

At the end of the day, Percocet is another tool for me at this stage in the "game" that is my disease management. It's a tool for me because I want so desperately to LIVE by being present for moments in my everyday life but cannot do so when the pain I experience is so deafening and distracting. I use this tool far less than I use mindfulness exercises, running, journaling, and meditation (the list goes on); but I use it nonetheless.

Before jumping a plane to Juneau, I had a handful of follow-up appointments to get to. I was particularly nervous about seeing my new pain management provider as I knew it would require a conversation about "options." I was really hesitant at first-- even debated "sugar coating" the description of my pain out of fear I'd be labeled a drug-seeking individual. But then I remembered this trip, and how desperately I need to soak it up without grappling with severe pain.

So, I spit it out. The conversation went like this:
Me: "I'm going to Alaska tomorrow. For 9 days. And I really want to enjoy my time there without breakthrough pain." 
Dr. P (with the biggest smile on her face): "Kenzie, what do you need to enjoy the hell outta this trip?'


I know, right? I'm still in shock too. A doctor who finally saw me for ME. And is just as determined to get me to a place where I can PHYSICALLY experience the immense joy a life of travel has to offer.

A suitcase, backpack, some belongings, and bottle of Percocet later and I was on my merry way. I made it into Juneau late last night. Slept in this morning, took my meds, and have spent the day in the library just down the street. Tonight is all about getting out on the boat, doing some fishing (hopefully), and whale watching.

My health has dictated a little too much of what I do/who I am this summer...so I decided to fight back. Life has been hard lately. That's a fact. But love is real, peeps. Good things happen. Joy is possible. I may always be sick, but I will also always be Kenzie.

This is what beating the odds looks like...all in the name of adequate pain control. Thank you, Dr. P.

5.03.2017

The One Thing I Need You to Know About My IBD

Well over a month ago, a relatively new friend of mine and I were in conversation over lunch. We were catching up about all the things college girls do-- boys and homework, boys and homework. About mid-conversation, I had a moment where I thought to myself "I feel normal right now."

Not even a split-second after that thought crossed my mind, my new friend asked "Kenzie, how has your health been?" I started by giving her an elevator speech overview of sorts. There's low blood counts. I'm still dropping weight unintentionally. A lot of my days/nights contain vomit. Lots of vomit. I'm frustrated. I'm anxious. I'm scared.

She looked at me from across the table and said "Kenzie, I don't know how you do it. I can't imagine how daunting these surgeries must be. How scary it must be to make treatment decisions..." I nodded my head. Those things are scary. That was a validating statement. The conversation carried on and I didn't think of this exchange again until I found myself on the bathroom floor last night. And that's when it hit me.

I had left my night class early due to yet another wave of nausea and made it back to my dorm room. Ophelia was there waiting for me; napping on our little twin sized dorm bed sweetly and soundly. She was excited to see me as she always is after we have a few hours of "break" time from each other.

I clipped on her collar, clipped on her leash, and we headed outside for a potty break. On our way back in, I realized I was going to be sick. Making it back to the toilet in time, I threw up my stomach contents for the umpteenth time in 24 hours. I stumbled to my bed, snuggled next to Ophie, and tried to breathe deep and slow. When I had regained some strength, I reached over to my nightstand and grabbed some baby wipes which I used to wipe my mouth and nose.

Shortly thereafter I excused myself to the bathroom. Not a second after I sat down, I realized I was finally going to 'go' after some back up over the past several days. I pulled up my pants and quickly skittered across the hallway to my bedroom where I grabbed the baby wipes and a brown paper bag from my colorectal surgeon's office. Upon returning to the restroom, I placed the little white hat from this bag underneath the toilet seat and proceeded to go to the bathroom.

After cleaning myself up and pulling back on my owl printed pajama pants, I knelt on the floor by the toilet meticulously opening sterile bags and bottles and carefully placing the correct amount of stool into each one. Around the time I opened the third of seven bottles, I noticed my bottom lip was quivering. Upon opening the fourth, I felt the tears start to flow...and before even reaching for the fifth, I sat back against the door frame and began to violently sob. Tears that had built up over YEARS of humiliation, frustration, confusion, and hurt finally broke through. And for once, I let them.



If there is one thing you ever know or learn about inflammatory bowel disease...please, please, please, let it be this. These are the moments I am scared of. The moments I am behind closed doors and quite literally find myself shoveling my own shit into vial sized containers to be sent away and tested. The moments where all of the built up animosity towards these diseases and the embarrassment they cause comes crashing down. The moments I am reminded that this is my life. That this is what it has become...and that this is what it will be for the foreseeable future.

To be quite honest, I'm not scared of surgeries. I'm not scared of treatment options, vomit, and long nights spent in a cramped ER. I'm not scared of a new diagnosis, an abnormal test result, or even unaccounted for symptoms. But what I am absolutely pretrified of is the moment pictured here-- a moment in which I am truly and utterly alone; humiliated beyond belief and at the very end of my rope. I am scared of the pain that even my closest friends and family members cannot enter into and sit with me in.

THAT pain is the pain I have to deal with and carry completely on my own. THAT pain is the pain I can't tell you about the next time you ask me how I'm "really" doing merely because it's taboo to talk about your inflamed bowels, stomach dysmotility, and rectal pain on the internet or otherwise. THAT pain is the pain that reminds me I am absolutely scared. Oh, how absolutely scared I am.

THAT pain is also the pain you do not, cannot, and likely will not see or experience for yourself. But THAT is the pain I need you to know about. THAT is the pain I need you to hold for me while I cry out the frustration and allow myself a moment to be the broken body + soul that I am.

THAT is the pain, and it is so relieving to finally just. feel. it.