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By Brenda Kong, as told to Shishira Sreenivas
I developed psoriasis and psoriatic arthritis (PsA) at the same time when I was 12 years old. I’m 41 now. My psoriasis diagnosis was easy, but the PsA diagnosis was not. Because I played sports as a teenager, doctors attributed my aches and pains to that. Unfortunately, I wasn’t fully diagnosed until I was 21.
By then, we couldn’t turn back time on all the joint mutilation I already had. For example, something that had bothered me since I was 12 was my middle finger joint on my left hand. I said, “Hey, this is really bad. It shouldn’t be this swollen for this long.” But I kept being told, “You’re playing too much sports,” and “If you rest it and ice it, It’ll be fine.”
It’s not fine. It became my first mutilated joint. Now I literally have full-body arthritis, from my jawline all the way down to my toes.
The Hardest Time
My late teens into my early 20s was the hardest time for me. When I was a college student, 18 years old, I tried out for the school’s volleyball team. But because of my pain, I never got to play. The stress I had after starting college was horrible. It all just went from 0 to 60. And the nature of PsA is that it responds to stress.
Most of my joint damage happened when I was between the ages of 18 and 20. At times, I couldn’t get out of bed. I couldn’t go downstairs without gripping the handrails. I wanted to go clubbing, wear heels, and all of that. I didn’t get to do that.
When I was around 21, both my psoriasis and PsA flared up and I was bedridden for 2 months. I had to use a wheelchair or cane to move. I went in and out of the hospital around three times in 3 weeks because we couldn’t regulate my body temperature. The inflammation was everywhere. I couldn’t even make a fist.
At the time, I very much hated my life. I’d never even heard of a rheumatologist until finally, a dermatologist who was treating my psoriasis urged me to see one.
Find the Right Rheumatologist
I think my biggest regret was not getting to a rheumatologist sooner. I could have taken care of a lot of the joint pain that later on became damage.
In fact, my advice for anyone else going through this would be to see a rheumatologist – not just any doctor – as soon as you can. Also, be consistent about seeing your doctor.
I actually went through three rheumatologists before I found one that really clicked. The first one, who diagnosed me, I just didn’t like very much. The second one didn’t take my insurance. But the third one, I loved. He was my rheumatologist up until I lost my insurance a few years ago and had to switch.
The first thing that rheumatologist prescribed for me was a steroid. It was a very strong steroid.
The first time I took it, I fell asleep on the couch because I was so tired. When I woke up, I sat up on the couch, then put my legs down and stood up. I didn’t even register how easy it was. The drugs had reduced my inflammation that much. I didn’t take deep breaths and brace myself as I usually did. I thought, “Oh my God! What just happened?”
But my biggest improvement didn’t come until a year and a half later, when my doctor started me on biologics.
Try Different Treatment Options
The first time took a biologic for PsA, I was around 24. I’d just bounce out of bed. I was like, “What are we doing?” “Where are going?” I just wanted to go do something, because I was able to. My friends and I went traveling. We went to Las Vegas six times in 1 year just to do it. My skin was good and my joints were amazing.
This was my first biologic for the arthritis, but my third overall. I’d tried others for my skin only and my joints only. But this worked for both. I went from being covered in psoriasis, barely able to walk, using a wheelchair, and taking 1,800 milligrams of ibuprofen daily to not needing painkillers at all.
I’ve used a number of biologics since. Funny enough, I’m now using that first biologic I took for my psoriatic arthritis. I got back on it 3 years ago when my arthritis was getting pretty bad again.
I’ve also tried complementary treatments like yoga and meditation in addition to the biologic. Also things like diet – losing weight just gave me a lot less to carry around.
Even on a biologic, you can have a flare-up. And there’s always a fear that your treatment will stop helping you. That does happen with biologics. After a certain point, it may lose efficacy and you have to figure out a new treatment.
If this biologic ever stops working for me, I would take the steps to try to find another one. I know how bad my body can be and how painful it can be without medication.
Manage Your Stress
Stress is a major contributor to PsA. So mental health is a big thing for me. Now when I have a flare-up, I actually relax a lot more. I know that if I stress out about it, it’s going to be worse for me.
I do mental health exercises now. This helps keep me from overthinking, going down rabbit holes, and stressing myself out like I’ve done before.
When I was in my early 30s, I told myself that I couldn’t keep doing that. So I started therapy and made managing stress part of my routine. I started doing calming meditation exercises. I started doing yoga. Even now, when I feel really stiff, I sit and do some light yoga poses until I can function a little bit more.
It’s impossible to be stress-free. But now I do things to help manage it, and I have a much better mental outlook.
Try Activities That Make You Happy
In my early 20s, I couldn’t cook because my hands hurt so much. Now I can. I do hand exercises to keep my hands loose and happy.
I cook massive amounts of food when I need to feel better. I just get in the kitchen, I turn on music, and I don’t talk to anyone. No one talks to me. Everyone in my house knows this. I stay in the kitchen and get all my frustrations out, and it always turns out beautifully. I redirect so much of my emotion and stress into cooking.
The psoriatic arthritis life is a roller coaster, for sure. There are going to be many highs and there are going to be many lows, unfortunately. You just have to focus on the highs, and you’ll get through the lows.
Photo Credit: martin-dm / Getty Images
SOURCE:
Brenda Kong, 41, psoriatic arthritis blogger, Oakland, CA.
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