So as some of you may have suspected given the gap in posts, my chant did not quite serve me in good stead. I spent the weekend before last in the hospital, which broke my longest streak ever (14 months) in terms of being hospital free, but all was not lost.
Certainly there were a few bumps: no, bronchiectasis and bronchitis are not the same thing so writing down the latter when I have the former during triage is not exactly helpful, and yes, the belligerent man in handcuffs in the next room wailing at the top his lungs, swearing, and hurling various insults and epitephs at the nurses and doctors trying to help him did unnerve the rest of us a bit.
But overall, collateral damage was minimal—I didn’t have to stay too long, and after intense negotiations, they agreed to avoid steroids and pursue another combination of treatment methods. I think I raised some eyebrows—I couldn’t breathe but was still trying to debate the issue anyway—but really, treating an infection and flare-up in a PCD/bronc patient does not depend on the exact same approach used in treating an asthmatic, and I just wanted them to understand that. I can’t say I blame them; how many PCD/bronc patients pass through their ER on a regular basis?
In the week since my discharge and initial progress, my symptoms haven’t improved in any discernable way, but life has been too interesting and jam-packed for me to care. Friday I was in New York to meet with my agent and editor to discuss my book. I had no voice (seriously, we’re talking Croaker here), coughed every two minutes or so, and was so pale I scared myself when I looked in the mirror.
But here’s the great thing: My agent and my editor know I’m sick. In fact, that’s one of the reasons why they think I’m the right person to write a book about living with chronic illness for people in their 20s and 30s and how this generation of patients is changing medicine, the work place, and society. After hours of dirty looks on the train ride down because of my cough, not feeling like I had to explain myself was a pleasant relief. Oh, and the lunch and the conversation were wonderful. I went back to my hotel feeling like I’d discovered my writerly voice again. (At least one of my voices was back in action).
To add to the bliss, we met up with friends at what I consider celiac heaven: Risotteria, this amazing restaurant in the West Village that serves a dizzying array of risotto dishes, gluten-free pizza, breadsticks, and paninis and the most indulgent GF desserts. My only regret is that my sense of taste was muted given my lingering plague, but oh the consistency! Biting into thin, crispy pizza that had just the right amount of chew to it is a sensation I have missed since going gluten-free. The true litmus test? The group had to question for a minute if the breadsticks were GF or not—if they are so good that “normal” eaters have to question, then we’re talking seriously good.
I pulled into Penn Station with a lot of symptoms, a huge bag of meds, my nebulizer, and a lot of other paraphernalia. I’d been nervous all week about missing the trip and lamenting the timing of my infection, but it all worked out. Illness was ever-present, but I rested when I needed to, took cabs when I couldn’t walk, and I didn’t apologize endlessly for doing so. The sunshine, the good food, and the mix of business and pleasure outweighed all the symptoms I couldn’t leave at home.