A Young Wife’s Tale

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.

I’m tired of defending David’s diagnosis of Psoriatic Arthritis. He was diagnosed, and rediagnosed by two rheumatologists. A family doctor saw copies of David’s labs and concurred with their diagnosis.

Every doctor we see wants to go over David’s medical history to be sure the diagnosis is accurate. Every nurse and dental hygienist*. It’s a good thing, in that doctors are paying attention. If there is anything else that could possibly be contributing to David’s joint pain, one of these medical professionals will catch it. (We are currently exploring the possibility that David has fibromyalgia in addition to arthritis.)

It’s a bad thing, in that some doctors don’t believe David has arthritis. One doctor even questioned the diagnosis because David is “awful young to have Psoriatic Arthritis.” With that doctor, I chose to ignore all of her comments on arthritis because she obviously knows less about arthritis than I do, and apparently has never heard of juvenile arthritis.

I wish David had a definitive diagnosis of Celiac Disease or Gluten Intolerance. Without the diagnosis, we can’t say for certain if trace amounts of gluten are okay. I’m not always buying certified gluten free products. As long as the ingredients don’t have wheat, I’ll buy it. David has taken buns off of burgers, and eaten lots of food that has touched gluten products. We really don’t know if this is hurting him or not. He doesn’t have any symptoms when he consumes trace amounts, but that doesn’t mean it isn’t damaged his stomach if he does have Celiac. It’s frustrating.

We met with David’s new rheumatologist yesterday. The old rheumatologist back in Dallas sent a copy of David’s file on June 16, but it still hadn’t made it’s way to South Jersey. The mail runs very slowly between Texas and New Jersey.

So, without any paper work, x-rays or labs to go on, the doctor examined David, asked a few questions and told him he looked great. He could see any signs of Psoriatic Arthritis. Of course, that could just be because of all the medication he’s taking.

He questioned David’s diagnosis for several reasons, and ordered new x-rays plus the standard blood work David has every eight weeks.

I remember calling David’s parents in the car afterwards while we drove home. They were much more upset than I was. I thought it was no big deal. We had a diagnosis. We had a plan. They were going to make David better. Everything was going to be fine.