By Nicole Shine
I lost my husband. Not in any of the conventional ways. He didn’t die or leave me for his secretary. Instead, he got an autoimmune disease that no one’s heard of, dermatomyositis, and disappeared. Now I have Husband 2.0, but unlike an iPhone, he’s not a better version of his past self. Where did that guy go?
I’m pretty sure his meds are holding him hostage. He’s on a regime of drugs—methotrexate, prednisone, hydrocodone—to make his immune system stop attacking his muscles and to ease his constant pain. Twice a month, he’s hooked up to an IV for 6 hours of immunoglobulin treatment, which supposedly has immune superpowers. Every six months, two more days of another IV therapy, Rituxan, which has helped rheumatoid arthritis patients like golfer Phil Mickelson. I’m not sure how Phil felt after Rituxan, but my husband felt like he’d run the Los Angeles Marathon with a hangover.
These drugs hamper his sleep, so he also takes Ambien. Plus, oxycodone and dilaudid for migraines. No, he never had migraines before dermatomyositis. Yes, our bathroom counter looks like a pharmacy.
Mainly, I blame prednisone, a nasty steroid, for making my husband vanish. The label warns of side effects like mood changes, depression, paranoia, and impaired sleep. He’s on 35 mg per day–down from a previous high of 60 mg–and immediately after he swallows a pill, Husband 2.0 appears.
Husband 2.0 spends hours in the guest bedroom with the door shut. He tells me he’d rather be alone. “You mean live by yourself?” I once asked. No, he said, he realizes that would make his mental state worse.
Husband 2.0 has lost his sense of humor—one of the reasons I fell in love with him. The other day while I was playing a rollicking game of hide-and-seek with our dog, he yelled “Cut it out!” The guy I married would’ve joined the fun.
I’m turning into a different person, Wife 2.0. She’s a tough cookie. We’re going to get through this.
We are flying to Baltimore next week, so he can be treated by specialists at the Myositis Center at Johns Hopkins Hospital. I hope they make him better. I hope there’s a way to eliminate prednisone from our lives. I want my husband back.