Bitter-Sweet Emotions with ‘No Active Arthritis’

Bitter-Sweet Emotions with ‘No Active Arthritis’

The best news I’ve ever received was hearing my son’s doctor say he has no active arthritis. The second best news: having my own doctor tell me the same thing.

When I heard those beautiful words – both times – I felt excited for new possibilities, new directions, and a pain-free life. We finally got the upper hand on psoriatic arthritis, and it felt so good!

Tears of joy to tears of frustration

For my son, this news meant he was able to wean off of medication, starting with the drug that had the least impact – naproxen. The idea was to reduce the dose until he was no longer taking it. If he flared, we could catch it before the dosing of his powerful biologic was touched.

Unfortunately, he didn’t last long. Within six weeks, he flared, and he continued to go downhill even more after adding the full naproxen back in his regimen. Our extreme happiness faded to frustration and worry.

How were we going to get this kid back on track? Patience and hope. That’s all we could do. It took time to get the arthritis back under control, but his medical staff didn’t give up, and neither did we. His nurse once told us, “He’s a tough nut to crack.”

Fear of the unknown

My son would go on to have a few more periods of no active arthritis followed by flares that would last weeks or even months. It was a rollercoaster of emotions: excitement, worry, and fear of what was going to happen next. We learned to navigate those emotions a little better over time, but just like psoriatic arthritis itself, they never fully went away.

Feeling on top of the world

My own experience of having no active arthritis was a bit different. For the past six months, I’ve had the disease under amazing control. I’m amazed at the activities I’ve accomplished: climbing the Sleeping Bear Sand Dunes, walking a half marathon, and even completing three kickboxing workouts in one day (okay, I do have to modify, but I’ll take some glory). I am super proud of myself. I feel simply amazing. Nothing is going to stop me now.

Cue the emotions again…

From excited to guilty

For me, I’ve seen the highs and lows of psoriatic arthritis. I know what it’s like to need a wheelchair to get around at the mall, and I know what it’s like to not be able to drive because I can’t grip the steering wheel. I’ve come so far, and I don’t deserve to have pain.

But I think that’s why I feel so guilty. No one deserves pain. No one deserves a life of psoriatic arthritis. I didn’t do anything different that the millions of others who are dealing with this disease. So, why am I the lucky one?

Advocating to make a difference

I hear stories every day of patients who can’t to get out of bed, can’t make it to school, can’t hold a spoon to cook, can’t style their hair or put on their favorite clothes. I know that at any time, I can be right back in that wheelchair, but right now, I need to make up for all the time lost when arthritis had its hold on me. “Can’t” is a word that is spoken too often with psoriatic arthritis. It’s time to change “can’t” into “Oh yes, I can!”

That’s why I advocate for better access to treatments, more research, and stronger outcomes for psoriatic arthritis patients. I don’t just do it for my son or for myself. I do it for the others who feel they can’t. Not only should we all hear our doctors say “no active arthritis,” we should all be able to hear “remission” and “cure.”

You can get involve in advocacy, too. Check out the National Psoriasis Foundation’s website for more information on how you can make a difference.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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