Living with Psoriatic Arthritis: A Roller Coaster Journey

Navigating Rough Days with Psoriatic Arthritis

Coping with Psoriatic Arthritis on Tough Days

By Frances Downey, as told to Sarah Ludwig Rausch

Living with psoriatic arthritis is no walk in the park. In fact, I often feel like I’m on a never-ending roller coaster ride. The ups and downs, the twists and turns, it’s all part of the wild journey I’ve been on for the past 12 years.

You see, it took a whopping 18 months for me to get diagnosed with this sneaky disease. Looking back, I realize that the symptoms were right there, knocking at my door for quite a while. But it wasn’t until 9 years ago that I received the official stamp of “psoriatic arthritis.”

Now, let’s talk about the challenges I face on a daily basis. Being single adds a unique twist to my situation. When I’m in the midst of a flare-up, it’s like having the flu from hell. And guess what? There’s no one to clean the house, do the laundry, or fetch groceries. It’s either relying on the kindness of others or going without the essentials.

And then there’s the dating scene. Oh boy, where do I even begin? Figuring out when and how to drop the bombshell about my condition is a tricky puzzle to solve. When I do bring it up, most people just think of their arthritis-stricken grandma and completely miss the mark. They have no idea that psoriatic arthritis is a whole different beast that can wreak havoc on your entire body.

But the challenges don’t stop there. Losing friends is sadly a common occurrence for people like me. Psoriatic arthritis is highly uncooperative and unpredictable. Canceling plans at the last minute due to a flare-up can strain even the strongest friendships and partnerships.

But fear not, my fellow warriors! Despite all the hurdles, I’ve managed to find ways to make life a little bit easier.

Track Triggers for Flare-Ups: Unmask the Culprits!

If life were a detective novel, then stress would be the arch-villain behind my flare-ups. That’s right, stress is the culprit that triggers the roller coaster ride of pain and discomfort. But here’s the twist: everyone’s triggers are different. What sets off one person’s flare-up might not affect someone else in the same way.

So how do you unmask these sneaky triggers? You become a detective and keep a log. There’s an amazing app called ArthritisPower that’s like having your own personal Sherlock Holmes. It helps you track your sleep, fatigue, pain, and other symptoms, revealing clues and patterns in colorful charts and graphs. You can even email the data to your doctor and participate in research studies. It’s like having your very own sidekick in the fight against psoriatic arthritis.

Keep Stress at Bay: Outsmart the Beast!

In my quest for peace and harmony, I’ve become a master of stress prevention. When stress comes knocking, I say, “Not today, my friend!” Recognizing potential stressors and having a plan of attack has become second nature to me.

Take lunch with friends, for example. I’ve learned to give myself a 15-minute buffer before leaving, avoiding the stress of traffic or being late. This way, I can stroll leisurely to the restaurant, savor the company of my friends, and return home feeling blissful instead of stressed.

Remember, my fellow warriors, there are things within our control. Don’t underestimate the power you hold in your hands to steer your life away from the treacherous waters of stress.

Get the Most Out of Treatment: The Art of Navigating the Medical Maze

When it comes to treatments, one golden rule reigns supreme: follow your medical professional’s orders. Regardless of how you feel, don’t be tempted to go off-course without their approval. Trust me, it’s a recipe for a flare-up disaster.

To chart your progress and ensure effective treatment, keep a log of any improvements or setbacks. Play the role of an investigative journalist and gather all the details of your symptoms, allowing your doctor to devise the ultimate treatment plan.

Oh, and before your appointment, make a list of questions. Trust me, it’s a lifesaver. Not only will you avoid that classic “I forgot to ask” moment, but you’ll also leave the office armed with answers and a sense of clarity.

And if you find that your current doctor isn’t a good fit, don’t hesitate to shop around. Your health is too precious to settle for anything less than the best.

Have a Backup Plan for Bad Days: Sleuthing our Way to Smooth Sailing

Living with psoriatic arthritis means accepting that any day can throw a curveball at you. Feeling great in the morning? Well, brace yourself for a potential storm in the afternoon or evening.

To combat these unexpected detours, it’s crucial to have backup plans in place. Whether it’s a trip to Costa Rica or a busy day at work, a contingency plan ensures that you navigate the twists and turns with confidence. And lucky for me, I have a supportive boss who encouraged me to seek a medical accommodation.

But remember, dear warriors, you don’t have to face this roller coaster alone. Find solace and support from others who understand the battles you face. Online communities like CreakyJoints.org and Bensfriends.org are a treasure trove of camaraderie and understanding. After all, having friends who truly “get it” can make all the difference in the world.

So buckle up, my fellow warriors, and hold on tight to your sense of humor. While psoriatic arthritis may throw loop-de-loops and giant plunges our way, we have the power to turn it into the ride of a lifetime.