Infusions: What I've Learned and How I Prepare

I remember the first time my rheumatologist mentioned infusions. "It's a *different* option," she said "but for some patients, it's the right option." I had a hard time trying to wrap my mind around this option. As a college student, it just seemed that weekly injections would always be a more appropriate and convenient option. However, since I wasn't doing well on my current therapy, my doctor recommended I try an infused biologic.

And so I was started on that infused biologic for my rheumatoid arthritis + inflammatory bowel disease back in April after years of trying various alternative medicinal therapies. Though I'm still learning how to best prepare for and then recover from these infusions, I wanted to share the experiences I've had so far. Being my 6th infusion *was* this week, I thought that finally writing a post and starting the conversation was long overdue! So, what have I learned?

Bringing a few comfort items is key. I always show up to the infusion center with my favorite blanket, my favorite #BeTheCactus waterbottle, headphones, and a good book. These things provide me with both comfort and entertainment which makes infusion days a bit easier and (dare I say it) a little more fun! I've learned to use the infusion time to relax, spend some time doing some of my favorite quiet activities, and take short naps!

Invest in getting to know your nurses. Every single one of the infusion nurses I've interacted with (so far) at my infusion center have really taken the time to ask genuine questions about my disease activity, life outside of being a patient, etc. In turn, I've gotten to know them as well! I have loved getting to know my nurses and now consider them friends.

Pay attention to how you feel afterwards.  Paying attention to how I felt following infusions and communicating that with my rheumatologist was key in making my infusions much less complex and/or uncomfortable.

If you and your doctor decide that an infused medication is right for you, give it a chance. I was ridiculously hesitant for A YEAR even though both my rheumatologist and gastroenterologist thought that an infused medication might be 'right' for me. Though at home injectable therapies may have been more convenient, they weren't doing the job for me + my disease activity. Giving this infusion a chance has really changed me life. I wish I could go back and tell myself to give it a chance much, much sooner!

Some patients receive infusions through an implanted port-a-cath, but not every patient on an infused drug needs one. As pictured above, I receive my infusions through an implanted central line or port-a-cath. Several years ago, I thought this was a necessity for being on an infused drug, but the majority of patients do just fine receiving it through a peripheral line. Every patient is different, though, and talking with your rheumatologist will determine the best course of action should you have any complications with your veins.

Connect with other patients who are on the same infused medication(s) as you are. I've had so many questions along the way, and connecting with other patients who are on the same infused medication as me has made me feel supported + more confident. I was uncertain that I could make infusions "work" for me and my schedule, but bouncing concerns off of other patients in similar situations really helped me in the long run. There is nothing quite like conversing with people who truly "get it!"

Have you been on an infused drug for your RA or IBD? What tips/tricks have you picked up along the way? I'm all ears!

To find and connect with other infusion patients, check out a new photo contest by Joint Decisions called Matt Across America, where you can enter for a chance to meet fellow rheumie and celebrity, Matt Iseman! The contest aims to increase awareness of IV therapy by capturing what an infusion day is really like for RA patients. Check out #MattMeandIV for a glimpse into RA patients’ infusion days, and visit Joint Decisions on Facebook to learn more and enter! For official contest rules, click here.

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own and should NOT be taken as medical advice.

Check out Joint Decisions on Facebook and Instagram!


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.


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.


I Don't Want To Be (Physically) Healed

It was a Monday-- the start of a fresh semester. I pushed through a weird queasy/cramping feeling in my stomach all day and happily attended night class. Following class, I went to bed feeling completely nauseated and incredibly exhausted from "pushing through" all day. Still, it didn't occur to me that something could be seriously wrong.

Around 2am Tuesday morning I began throwing up. I woke up sweating profusely with a fever of 101.2 and attempted to go back to sleep + ignore the pain in my stomach though it appeared to be worsening. At this point, I thought perhaps I had the flu. I had also done my Methotrexate injection the evening prior and it is not uncommon for me to experience nausea/vomiting/a low grade fever following injection night(s). I continued trying to get some rest. No big deal, I thought.

I was wrong.

By 8am Tuesday morning, I could no longer hold down water or lie in anything other than the fetal position. The "twisted" feeling in my stomach left me feeling pretty certain that I was suffering from a bowel obstruction. I picked up my phone and dialed the colorectal surgery office and spoke with one of the nurses who cared for me following my subtotal colectomy last April. Through tears, I explained my symptoms and attempted to breathe deeply through the pain which was becoming more and more difficult to do as the seconds passed. The nurse and I both agreed that I needed to get to the Emergency Room where my attending surgeon would come by later. That said, she started the admitting process over the phone.

As I was giving the nurse the basic admitting information she asked for, she told me to pack a few things and gather my medications. Though I was aware of my delusional state from lack of sleep and the exhaustion that accompanies such pain, I somehow thought that I was going to drive myself to the ER. As I crawled my way out of bed and stood up to gather my medications, the pain became so severe that I blacked out/fainted. It happened quickly and absolutely without warning. When I came back "to" I was lying in a puddle of vomit and completely disoriented. After a few seconds, I remembered I had been talking to a nurse. I picked my phone off the floor and heard her say "McKenzie, stay with me. There is an ambulance on the way."

I don't know if it was the sheer feeling of defeat or the effects that the significant pain/lack of sleep were having on me at this point, but I broke down into hysterical sobs on the floor of my bedroom. Within 5 minutes, several paramedics came into my dorm room apartment, somehow managed to get me on the stretcher, and on the way to the hospital.

The ambulance ride was absolutely terrifying and incredibly uncomfortable. The pain continued to ebb and flow much more severely. As it lessened and then spiked again I screamed, continued to sweat, and white knuckled the scratchy ambulance blanket all wadded up in my hand. I really don't think I can even recount further details right now as my mind seems to be blocking them out (and for good reason). The 12 hours between 8am and 8pm that day were easily the worst and most painful hours in my 21 years of life thus far.

By the time we arrived at the hospital, all of my admitting paperwork was done. I was brought to a room in the ER where I was given pain meds and we arranged for a CT scan. The CT revealed (as suspected) a small bowel obstruction. Due to its location and severity, my surgeon suggested I may have had this obstruction for over a month.

Immediately, an NG tube was placed to decompress my stomach and remove the bile which had settled and was making me so sick. My surgeon came in again shortly thereafter and explained the emergency dilation procedure I would need to undergo early the following morning. At this point, my pain was being phenomenally managed and the next thing I remember is waking up in the hospital room I would call home for the next 7 days.

The days were long and the nights were even longer. Though my pain management regimen was very helpful in "taking the edge off," it was very evident that beyond the mechanical obstruction problem, we were dealing with significant inflammation all along my digestive tract. This inflammation can only really be treated by entire removal of the affected part(s) or utilizing high dosages of immunosuppressant drugs. Thus, the pain and symptoms continued as we began having conversations about permanent ileostomy/colostomy placement.

Around the 4th or 5th day, I remember lying in bed around 4pm. I had just turned on the song "In Control" by Hillsong United, closed my eyes, and quite literally began to cuss at God. Mere seconds after this argument began, in walked the hospital Chaplain. As we began talking he said "McKenzie, I remember you." It turns out this Chaplain had also come to visit with me back in April '16 when I underwent my subtotal colectomy. He remembered me as the youngest patient on that particular floor, and he also remembered a joke I had cracked in the midst of the hysterical tears that often accompany such post-op pain. Ha!

The Chaplain sat next to my hospital bed in an uncomfortable folding chair for a good hour. We talked about the complexity of my illnesses, how passionate I am about studying to become a social worker, and how I managed to get a hospital room "with a view." (Seriously! It had the best view of the Minneapolis skyline!) As we wrapped up our conversation, he asked to pray with me. Without thinking or really even knowing what was coming out of my mouth, I replied by saying "we can pray, but I don't want you to pray for me to be healed."

A bit taken aback but seemingly intrigued, the Chaplain looked and me and said "tell me more about that." Through tears and a continued whisper tone of voice (thanks, NG tube) I told the Chaplain things I have never told another human before. I told him what I feel God has been telling, showing, and teaching me for the past 7+ years.

I told the Chaplain I couldn't remember the last time I prayed true, physical healing over my own body. I told the Chaplain how I haven't really been to church in over a year. I told him of some recent experiences in which two church "leaders" suggested there may be "unforgiven, generational sin" in my family...hence the reason I had not yet "received healing."

Finally, I told the Chaplain what I felt God was telling me as I had been lying in the that hospital bed. I told him that I had spent the past several days doing nothing but swearing and yelling at God. Angry...livid, really. But also that I had never felt so close the One who created my body this way...and no doubt for some good and holy reason.

I told the Chaplain that I believe God can heal. In fact, I believe that He DOES. But there is something to be said about other forms of healing (in ways and for reasons higher than our own) apart from the physical. I believe that God has been faithful to me thus far and will continue to be. I see that God has used this pain whether He ordained it or not. He has made it purposeful, intricate, and beautiful. He has made it worthwhile. And yes, He has even made it good.

"God could have healed me 7 years ago, a week ago, even yesterday...but He has not chosen to do so...and that," I shared, "gives me reason to believe that perhaps the path I'm walking has a purpose far greater than what I will ever be able to comprehend."

That, to me, is the absolute truth. Some way, some how, God has given me distinct purpose and great joy in a life marked by tragic illness, great despair, and exhausting desperation. Perhaps having been given those things is what allows me to live a better life than the one I would be living if physical healing allowed me to do so painlessly and "ailment free" here on earth.

The bottom line I tried to explain is that to live in a constant state of pain is to live in a constant state of reliance on faith in Christ. I believe that and know nothing will ever compare to that. I fully believe that being healed and whole in Heaven one day will be worth the journey I am currently on.

Heaven. My mind was then directed to the idea of Heaven. Through tears I told the Chaplain "I don't want to be healed because I want to experience the fullness of God's presence HERE. In great sickness. In horrendous pain. In a plastic hospital bed with an NG tube down my throat, a defeated spirit inside of me, and visible tears in my eyes..."

I want to experience the fullness of Christ and how He responds to His children when they are lying awake at 2am screaming in pain and begging for the strength to make it through to the next dosage of pain meds. I want to experience the fullness of Christ which feels so visceral and overwhelmingly beautiful upon waking up from yet another round of general anesthesia. I want to experience the fullness of Christ in the deepest, darkest hours of my life here on earth.

...And I want those things not for attention, pity, or to be seen as some great martyr. I want those things and the other pain our broken lives bring because I want to seek, to know; to pursue, to learn. To wrestle with and experience the perplexing truth that authentic JOY is possible in the midst of severe pain.

All of these thoughts and tears had me reciting a favorite poem in my head. A poem that I'd never truly understood before, but could now grasp to its full extent.
The Thorn by Martha Snell Nicholson 
I stood a mendicant of God before His royal throne
And begged Him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, "but Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me."
He said, "my child, I give good gifts and I gave My best to thee."
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without His added grace,
He takes the thorn to pin aside the veil which hides His face.

I don't want to be (physically) healed. Not here, not now...for I know God is using this daunting hike through life and the mountains of chronic illness to refine and restore my soul in ways that only He can.

So, the Chaplain and I prayed. Not for physical healing but for the strength to endure. The grace to benefit. The willingness to learn from and let God use this pain. For the first time in a long time, I felt like someone had truly listened to me. Someone allowed me to be comfortable in all of my uncomfortableness...someone chose to enter into that uncomfortableness with me. And in my mind, there is nothing more beautiful than that.