A Young Wife’s Tale

Each April, in honor of National Volunteer Month, the National Psoriasis Foundation recognizes it’s thousands of volunteers – people who work each day to help further the mission of the Psoriasis Foundation: to find a cure for psoriasis and psoriatic arthritis and to eliminate their devastating effects through research, advocacy and education. Our volunteer network is thousands strong and working in infinite ways to help people with psoriasis and psoriatic arthritis lead healthy, fulfilling lives and hope for a future without their disease.

Volunteering can be an intimidating idea, but it’s not always a matter of giving hours and hours each week; sometimes it’s the smallest action that has the biggest impact. Writing a letter to your member of Congress asking for support of psoriasis legislation could be the difference between getting a bill passed in Congress or not. Speaking to your child’s class about psoriasis or psoriatic arthritis could prevent a child from being bullied because of their skin. Sharing your story on the TalkPsoriasis message board could be the encouragement another person needs to seek treatment.

Even though David’s psoriatic arthritis is in remission, we don’t know how long it will last. We are really enjoying a more “normal” life right now, but I still struggle with fear and anxiety.

The last time David saw the awful New Jersey rheumatologist, he would only write a script for a 90 day supply of Humira instead of the typical 12 month supply doctors usually send to the Humira Patient Assistance Program. When I called to order another shipment (they send one 90 day supply at a time), they reminded me he’d need another script.

I told them the name of David’s new rheumy, and they said they didn’t have her info in their system. No big deal. They said they’d contact her and fax her portion of the paperwork.

But, I felt nervous. What if they didn’t have her info because she refused to work with Humira or something? Sounds silly, I know. After my experiences with David’s first rheumatologist and COBRA though, it’s not that farfetched.

The day David was diagnosed with Psoriatic Arthritis we learned several things. One, David has psoriasis. He thought he merely had dandruff. Two, he had Psoriatic Arthritis, which we’d never heard of. David and I both felt pretty good when we left the rheumatologist’s office. We had a name for David’s terrible back pain. The doctor was starting him on medication, sending him for x-rays and a bone scan. The rheumatologist said he’d soon be in remission.

We were so naive. The rheumatologist was overly optimistic. (A year later he was fired.) Here’s what I wish I’d known the day my husband was diagnosed with Psoriatic Arthritis.

1. Remission is not as easy as the doctor makes it sound. David was diagnosed in February 2008. He didn’t go into remission until December 2010. He got much, much worse than he was the day he was diagnosed before he got better.

2. Remission does not mean you’ll be doing everything you were doing before the diagnosis. David still has pain every day. He’ll probably never go back to playing softball, racquetball and wakeboarding. We are extremely grateful that he is doing as well as he is. But it’s not like it was before the diagnosis. Remission does not mean cured.

Yesterday, I blogged about David’s appointment with his new rheumatologist. As the nurse was asking David what medications he was taking, David mentioned that he has been taking less than one pain pill a week. I knew he was taking less, but I didn’t realize how much less. The only other medication he’s been taking is Humira.

Since December, David has been off of most of his medication. He has been in better moods, he has only flared when he’s done too much, and even then, they were mild flares.

Throughout his appointment, David talked. He answered ninety percent of the questions asked. At past appointments, I’ve done at least fifty percent of the talking. He volunteered information he thought the doctor might like to know. It was pretty amazing

This rheumatologist did not talk over him. She asked many questions regarding David’s psoriasis, which was nice, since most rheumatologists focus on the arthritis part of psoriatic arthritis, especially since David never complains about his psoriasis. She listened to our answers and repeated back to us what she was hearing. At one point, during family medical history, she asked us to clarify if a relative had irritable or inflammatory bowel syndrome. She didn’t freak out the way other rheumatologists have when he mentioned having taken medications such as Wellbutrin and Celexa.

Towards the end of the appointment, she told David she wants him to get back to exercising. She emphasized that David do an exercise he enjoys. If you enjoy your exercise routine, you’re much more likely to stick with it. She seemed full of common sense.