A Day in the Life of Someone Living with Psoriatic Arthritis
My alarm gently guides me to wakefulness, birds chirping and slight sunlight in the background. I’ve set three alarms, and this is just the first. I turn it off and roll over, completely exhausted. Soon alarms two and three go off, and I reluctantly get out of bed. I feel aches and pains in every inch of my body. Gosh, how I wish I could get insurance to pay for a new mattress. But it’s a luxury I can’t quite yet afford and one I pay for daily with constant back pain. I hobble into the kitchen to get my morning OJ; I have to take my medicine first and foremost. I hide the bags under my eyes with makeup, carefully select an outfit that is comfortable, soft and easy to move in, and I leave the house to head to work. This is a day in my life — as someone living with psoriatic arthritis (PsA).
I had to switch to part-time a couple of years ago because I was so tired all the time, missed so many days for doctor’s appointments and was just burnt out. After I was diagnosed with PsA, I went back to graduate school because there aren’t many jobs you can do with a bachelor’s in psychology that is strictly office work. Now I have a job that is primarily sitting and talking. Vocational rehab helped me set up my office in an ergonomic fashion to help me manage my physical pain. And while that’s somewhat helpful, nothing fixes the fatigue.
It’s a half-day at work today; I have several doctor’s appointments this afternoon that I couldn’t get scheduled on my days off. They are all located about an hour away, so I leave before lunch to get to the first one on time. By the time I get there, I am stiff from sitting in one position for so long, and I have to stretch before I enter the pain clinic. It’s a routine check-up. I sit down and start to fill out paperwork to describe my pain since I was last seen. The location, the type of pain and the intensity. Then I’m called back and have a brief chat with my doctor about my treatment plan.
I leave and drive about 15 minutes away to the hospital. My rheumatologist is located there, and I check in with him briefly. I update him on all my changes in medications and all the problems I’ve experienced in between visits (especially any infections, since I am technically immunocompromised now). I tell him my shoulder has been hurting more and more. He does a physical exam and sends in a referral for me to get an x-ray. In the meantime I ask him to refer me to an orthopedist for the issue. He obliges and I head to another floor to settle in and get an infusion that helps with my symptoms.
The infusion takes two hours, and I entertain myself by watching movies. I just got a permanent port placed because my veins are essentially worn out. I’ve been getting these infusions since 2016; the last time I had one prior to my port, they had to stick me six times to get an IV. My veins either blew or collapsed. The port makes it easier for me to receive my medication, but it is a risk to have it since I am immunocompromised. However, it was a risk I decided I had to take, since the five or so other medications I had tried all failed. This one works.
My infusion is finally done, and I’m able to go home and pick up some fast food on the way. I feel drained after my infusion and when I get home, I lie down for a moment, only to fall asleep for two hours. I wake up feeling refreshed enough to go through my bedtime routine. I remove my makeup, take my evening medicines and dole out my morning medications so they’ll be ready. (I most definitely am not a morning person.) I watch an episode of Lucifer, my new binge-worthy show on Netflix, and try to get my brain to reset for tomorrow. Fortunately I don’t work tomorrow and only have one doctor’s appointment, so I’ll probably get about 14 hours of sleep. Then I’ll wake up at 2 p.m. in order to drive an hour and a half to my doctor’s appointment; I intentionally scheduled it at that time so I could catch up on sleep.
Taking care of my health is a full-time job. I see no less than seven specialists. I typically have multiple doctor appointments during the week, and I am trying my best to work an additional three days a week. I am beyond exhausted all the time and in constant pain despite medications. But I continue to enjoy my work, so much so that even when I apply for disability later this year, I plan to continue to work as much as I’m allowed. I also have friends that are hugely supportive, from taking me to surgeries to going out to dinner. They are always there for me. My husband is a constant comfort too, as well as a reliable source of help. Through it all I have managed to develop hobbies that I enjoy doing on the days I have completely off.
While each day is a challenge, each day also typically holds some small joy for me to discover. And that, my dear reader, is a day in the life of someone living with psoriatic arthritis.