A Young Wife’s Tale

This was originally posted on April 25, 2009. It was the second blog post I wrote. It’s amazing to see how far we’ve come. And to know David’s arthritis could be this bad again.

My husband, David has Psoriatic Arthritis. He was diagnosed a year ago, at age 23. He’s only ever had mild psoriasis on his scalp. We actually didn’t know it was psoriasis until the rheumatologist told us. David has a family history of rheumatoid arthritis, so we were relieved to know he does not have the rheumatoid factor, although I recently learned that it could develop into rheumatoid arthritis.

Not long after David was diagnosed with Psoriatic Arthritis, before he started having flares that left him bedridden, I, the caregiver, had an anxiety attack. I blame it on the health insurance company we had at the time and my HR department. Here’s the gist of what made me so stressed out. Our health insurance [...]

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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.