A Young Wife’s Tale

God blessed us by sending us back to Texas. God performed a minor miracle by making David a remote employee for his company in New Jersey on a trial basis. I am so thankful for those things, but those were things we prayed for. We asked for those things to happen. Something else incredible has [...]

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.

My husband David is gluten free, but we do not eat a lot of “gluten free” products. Gluten free pre-packaged foods like pasta and cookies are expensive, and they just don’t taste the same. We prefer to eat naturally gluten free things like potatoes and rice. I’ll make things like flan instead of cake. But, occasionally I do attempt to bake something gluten free. I’ve made gluten free muffins several times, and they’re always so dry.

This time, rather than throw out a bunch of muffins made with expensive gluten free flour, I decided to re-purpose them.

Check out the videos I did for Health Central on psoriasis. This on is about Psoriasis in the Workplace and this one is about Personal Struggles while Living with Psoriasis. David is still doing well. I see my urologist again on Monday for my interstitial cystitis. We’re busy preparing for the move back to Texas! [...]