10.05.2017

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.


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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.