I think pretty much everyone is afraid of their future on some level. Maybe they’re afraid that they may not achieve their goals. Maybe they’re afraid that they will. I’m afraid of my future because I don’t know what it will hold. Will I ever be able to work full-time? Will I be able to have a family? While these thoughts are scary, the thought of the unknown in my future doesn’t scare me too much. It’s the thought of the known that does.
Let me back up a bit. As you know, I have psoriatic arthritis. I’ve been in pain since 2001, but it didn’t start to kick into high gear until 2010. One morning in July 2010, I woke up and couldn’t open my mouth more than 8 mm. A few days later, I was diagnosed with psoriatic arthritis. I had over 50 joints affected. The next couple of years were spent trying to find the right cocktail of medications and lifestyle changes to reduce the pain, which kept growing every year. Finally in December, 2012, I started Rituxan infusions and my life was changed significantly. Everything was better.
We first started discussing the possibility of going off the infusions sometime between August 2014 and January 2015. The idea of changing the only medication that has actually made a significant difference in my pain was terrifying. When my rheumatologist first brought it up, I cried. At the time, there were so many other factors causing my pain that I didn’t want to go off the Rituxan if those other things could improve my life. I had surgery and healed from it. I went on an elimination diet to identify foods contributing to my pain. I went back on Methotrexate. And while my pain improved from doing those things, it wasn’t enough for me to push to stay on Rituxan. What you probably don’t know unless you have inflammatory arthritis is that the long-term inflammation we live with also causes irreversible joint damage. The longer I go living with inflammation, the more permanent damage the inflammation may be happening. If I make the choice the stay on the Rituxan when something else may work better, I believe that I’m only hurting myself, perhaps permanently.
So what on earth does this have to do with being afraid of the known?
The Rituxan is dwindling out of my system, and at the end of the month I start Stelara injections. This means that I’m at the beginning of 2-5 months of high, high pain. And I know exactly what that feels like. I know exactly what it feels like to be in extreme pain, to have so little energy that every movement is a struggle, to wonder if today will be the day that I’ll end up back in the ER.
I’m not afraid of what’s might happen in the next couple of months, and that’s because I know exactly what’s going to happen. I’m afraid of what I know will happen. I know exactly how I’m going to feel. I know exactly how it will affect my life. Am I going to try for this time to be different? Absolutely. But the only way that I’m going to feel better – really, honestly, truly better – is for the Stelara to kick in. At the absolute earliest, that will be the end of March. If it does kick in (which I have to believe it will), the latest it will happen is the end of June.
I know what the next couple of months will be like, and I’m terrified. I’d be lying if I wasn’t. I’m terrified of what I know, and I think that’s fair.
But don’t think for a second that I won’t try to make the most of these months and that I won’t try to live my life as much as I can.
I spent 4 semesters of college living with extreme pain and struggling every single day, but I was still involved on campus activities, got good grades, and made and kept friends. I suffered from extreme pain, had 3 ER trips, had to quit my job as an RA, nearly dislocated my hand (brushing my hair, no less), and cried myself to sleep from pain way too often. But I still lived my life as much as possible, and I have as many great memories from that time as I do bad ones.
So yeah, these next few months are going to suck. But I’m still going to kick ass as much as I possibly can.