By Dwayne McClellan, as told to Kara Mayer Robinson
I’m 56 and I live in Baltimore, MD. Last year, I discovered I have psoriatic arthritis (PsA). I used to be a software systems engineer, but I’m no longer working because of my disability.
My journey started in 2014, when I was diagnosed with osteoarthritis and rheumatoid arthritis. As my condition got worse, I also developed PsA.
Getting the Diagnosis
I was diagnosed with PsA in 2020.
I’d started complaining to my rheumatologist about pain in my leg. One the symptoms of PsA is you start having pain in your major joints, like your shoulders, elbows, knees, and ankles. I started having hip pain down my right leg, which is a sign of psoriatic arthritis.
My rheumatologist went back and rechecked my blood to make sure she didn’t miss anything. That’s when she noticed other signs and told me I had PsA.
When I found out, I was disheartened. My first thought was, “Oh great, not only is my arthritis not getting any better, it’s getting worse.” I was already having trouble getting around. I use a power chair at times, and the worst-case scenario for me was to end up in that chair permanently.
My New Challenges
It’s been an adjustment. One of the biggest challenges is my loss of independence. Instead of driving, I sit in the passenger’s seat. My wife has to take on household duties. I can’t mow the lawn. I can’t take out the garbage.
Mornings are especially hard, before I take my medication. But my determination gets me out of bed.
I remind myself that I’ve gotten out of bed every single day and I can do it again. And I have a goal. I try to make breakfast for my wife and myself every morning. It’s a small goal, but it gets me out of bed.
Managing My Symptoms
I currently take an immunosuppressant. I also take a prescription nonsteroidal anti-inflammatory drug (NSAID) and an antidepressant that blocks nerve pain. These keep pain from overloading my system. I started taking those when I was diagnosed with RA. As my PsA developed, I started taking increased doses. Now I’m taking the maximum dose.
I’ve also started eating an anti-inflammatory diet, which helps me manage flare-ups. I watch my salt and sugar. I try not to eat too much red meat. Sometimes I get a craving for a T-bone steak. But if I eat it, it’s guaranteed that within 2 hours, my condition is flaring up on me.
I’ve gotten into gentle stretching. I also have a meditation routine. I try to find inspirational sayings to repeat to myself. For example: “Stress management plus time management equals pain management.” When I’m starting to get stressed out, I say it to myself. It works. I start calming down. It brings my blood pressure down.
My Medical Team
My rheumatologist and I stay on top of my health to make sure I’m feeling as good as I can. I have a great team of doctors who work together, including my rheumatologist and a pain management specialist who’s also my primary care doctor. I’m in the process of getting referrals for a pulmonologist and a dermatologist.
I see my doctors every month or two. I also use health apps on my phone to track my symptoms and keep my doctors up to date. I input my latest symptoms, then I upload the info to my doctor’s medical portal. They have it before I step in the door.
I use one app to track all my medications, including times, doses, and prescription numbers. The other app I use is MMP, or Manage My Pain Pro. It can also track pain. If you keep it updated, you can generate reports with a complete timeline. My doctors can look at the reports and get a day-by-day breakdown of my symptoms between visits.
My Emotional Support
My family is a big source of support for me. My primary support is my wife, Lydia. She’s been with me 19 years. My mother-in-law is also part of my support team.
I see a therapist to work through the emotions of having this condition. I’m frustrated because I’ve lost my independence and it’s a condition I can’t control. My therapist understands and he’s helping me work through it.
I’ve also found a lot of support in the Arthritis Foundation’s support community, which is called Live Yes! Connect Groups. I’ve joined groups, created new teams, and connected with a supportive social community. We check in with each other and lift each other up when we need it. We rally around each other. It’s kept me sane.
I’m also getting involved as an advocate. I recently became involved with the Arthritis Foundation in Maryland. I found out there was nobody advocating here, so I offered to step up. I hope to link up with other local teams to start bringing Americans with Disabilities Act issues to everyone’s attention.
I’ve had to make a lot of adjustments, and it’s difficult having an invisible illness. Unless there’s severe deformity in our joints or we use an assistive device, nobody can really see the damage to our bodies.
But I’ve found ways to adjust. And it’s affirming and humbling to be involved as an advocate. I feel like I’ve found a place where I can put my skills and abilities to good use to educate the public and help others who are struggling with psoriatic arthritis.