On becoming a spoonie
Christine Miserandino penned a story about how she shared with a friend what living with Lupus was like. (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) This metaphor gives language to the struggles people who live with chronic illness face, and a community of “spoonies” has arisen. I joined the ranks of spoonies last year, and everything about my life has changed.
2014 was an intense year for me. I’d spent a year as a nurse in the ICU at a long term acute care facility, and was thrilled to move on to my “dream job” as an ER nurse at a Level 1 Trauma Center. I struggled with the intense patient load and unrelenting pace in that ER, and felt like I never really recovered from my working shifts. I chalked it up to being in my 40’s, out of shape, and unused to the pace. When I felt something pop in the arches of both feet while pushing a particularly heavy patient up a ramp, I thought the pain would go away with some ibuprofen, ice, rest, and stretching. I’d had plantar fasciitis before, but this time it didn’t go away, and hard knots developed in my foot arches. The doctor at the employee clinic insisted it was not an acute injury, but rather ongoing “wear and tear” fasciitis. Little did I know it was a sign of something much more serious.
Between the pain in my feet and the unrelenting fatigue, I knew that I couldn’t keep working at the pace needed by the ER I was in. As hard as it was, I knew I needed to find a different environment. I loved the people I worked with, loved the challenge, and really had a passion for the work. I also knew if I continued, I would end up missing a lot of work, and putting more strain on my team through my absence and decreased performance. I moved to an ER in my hometown, and it seemed perfect. The pace was still brisk, but not as insane as the county ER, and I physically felt better for a while. I loved working there, but my physical condition kept worsening. A conversation with another nurse about kidney function being impacted by overuse of ibuprofen made me look hard at how much I was taking every week. At 800 mg per dose for many doses per week, I realized I was taking almost 10,000 mg a week and had been for the better part of a year. I decided my physician and I needed to start investigating what was going on. (Luckily my kidneys were still working fine.)
My response to a round of steroids was the tip-off for me. I knew my feet were hurting badly, what I hadn’t realized was that many of my other joints had been developing an ever-increasing level of chronic pain. A round of steroids brought my pain levels to near zero, all over my body. Prior to that, I would have said my ongoing pain level, out of 10, was about 3. What I realized once I didn’t hurt anymore was that I’d been living at a 6 or better. Many people feel like crap when they take steroids, but I felt human again for the first time in years. My migraines completely went away, I had energy again, and my joint pain was almost completely gone. My nursing reference books all pointed me toward an inflammatory process. As auto-immune disorders run in my father’s side of the family, it wasn’t a far stretch to start suspecting rheumatoid arthritis (RA). It took a bunch of blood tests and referral to a specialist (Dr. B) and many months, but it was confirmed as non-serologic RA in May of 2015. Recently the diagnosis was changed to psoriatic arthritis (PsA) based on new information Dr. B had after Munchkin started seeing her. The treatment doesn’t change significantly, as it’s still an auto-immune arthritis.
I’ll write more about the treatment of auto-immune disorders in future posts. What became obvious to me is that bedside nursing was not going to be a viable option for me ongoing. I couldn’t stay on steroids because of the numerous side effects that make steroids problematic. (There’s a reason one RA blogger calls them “Satan’s little tic-tacs”.) I couldn’t leave the RA untreated, because the pain was becoming unbearable and I would start having degeneration in many joints. But the treatment lowers my resistance to infection, and an ER is not a place to be working when I will pick up every cold, flu, and other communicable disease I come into contact with. So I changed my career plan and moved to a job working in healthcare with computer systems.
It’s been hard to change everything in my life, and many days I resent my illness for making it necessary. But I realize how lucky I am that I have a mix of skills that is in demand and allows me to continue providing for my family and is not as physically demanding. I’m still struggling with fatigue and pain, but I know I’m so much better off than many people. I don’t want to be defined by my illness, but it certainly is shaping my life at this point. So for now, it’s one spoon at a time and living life the best I can.