Defining ‘Strong’ with Psoriatic Arthritis

Imagine you’re playing The $10,000 Pyramid, and your partner gives you these clues:

• Olympic weight lifter
• Super glue
• Bullet-proof glass
• Superman

You might answer, “Things that are strong.”

Yes, those things are strong, but in my world, being a patient with psoriatic arthritis makes me stronger than all on that list. Here’s why.

I get out of bed every day.

Sounds simple enough, but when I am in incredible pain, fighting the urge to hit the snooze bar takes on a whole new meaning. It truly is an accomplishment just to start the day. My doctor once told me that the day I stopped getting out of bed every morning would be the day I let psoriatic arthritis win.

I can withstand side-eyes of unaccepting people.

Yep, bring it on. I’ll put them in their place and give them some education on psoriatic arthritis and what it means to have an invisible illness. Of course, this will be done with the utmost respect. I believe most people act this way simply because they haven’t encountered anyone with an invisible illness. I’m happy to shed some light in their direction.

My friends feed my strength.

When I have people who care about me, I feel more empowered than at any other time. And not all friends are the ones you see in person. Psoriatic-Arthritis.com has a wonderful community of patients who support me and lift me up on my not-so-good days. When you feel you're not alone, just about anything seems possible.

Needles don’t scare me.

After so many years of lab work, blood tests, and medication injections, I’m used to it. Of course, it wasn’t always that way. My son, who was diagnosed at age 5 with psoriatic arthritis, used to ask his phlebotomists how many years of experience they had, asked if they ever took blood from kids, and reminded them to be sure to use a butterfly needle. I’d like to say that he gets that from me, but the truth is that I get that from him.

I took methotrexate for treatment.

Anyone who can withstand the side effects of methotrexate deserves an award for strength. From nausea to fatigue to headaches to mouth sores, methotrexate is a drug for disease warriors. Thankfully, I no longer am prescribed this medication, but I have deep sympathy for those who do take it.

I can put up a good fight with insurance companies.

Dealing with insurance companies who dictate when, where and how you can receive your treatments is incredibly frustrating. If you’re in pain, frustration and stress multiply significantly. I’ve learned a few tricks along the way to cut through some of the red tape. I may not always win, but I do put up a good fight:

• Get your doctor involved from the start when filling a new prescription. Insurance companies really do respect medical professionals more than patients, maybe not a lot more, but every little bit helps. And even with a great medical team, it is important to follow-up and make sure nothing falls through the cracks.
• Ask to speak to the insurance supervisor immediately, even for issues that don’t appear to rise to be that significant. Usually what starts as a minor problem will snowball into something worse. Go to the top and save yourself some grief.
• Don’t accept the promise of a callback to resolve problem, especially if the person you need to talk with is unavailable at the moment. Stay on the line until he or she becomes available. It may take a long time and you may get disconnected, so use your speakerphone and try not to pull your hair out while listening to the hold music. This will test your patience, but usually the end result is worth it.
• Finding allies are important. Contact the National Psoriasis Foundation’s Patient Navigation Center for free help with any access to care issues. The staff sees many cases and has some tricks of their own to help you.

Here’s to all of the psoriatic warriors who really know what being strong means. Psoriatic arthritis may slow us down, but it won’t stop us.