Things were starting to get better for me the past few weeks as I saw my daily prednisone intake once again drop to 20mg and then 10mg. I tried not to think too hard about getting off this love/hate drug as this whole summer I would get off this steroid only to get back on it or need to up my dose when it became too low. Things almost seemed different this time and I thought I might actually get better before “Fall” hit. I was wrong.
The weather started turning, mold counts were becoming ridiculously high and then the dreaded combining/harvesting began. Living in the Midwest means you’re probably close to some form of agriculture, but I’ve always lived in sight, if not immediately next to fields. When the harvesting begins there is a thick cloud of debris and dust that fills the air almost looking like smoke or dense fog. All this stuff doesn’t really help anyone breathe, let alone someone like myself with respiratory issues.
I watched my peakflow averages drop 20-30% and my oxygen levels were consistently getting lower. It wasn’t really until this past week when I passed out from my oxygen becoming too low that I realized I couldn’t keep ignoring this. Liz really wanted me to go to the hospital, but I somehow convinced her not to take me. I instead opted to get a hold of my PCP the next morning who got me a Kenalog shot and upped my prednisone taper from 5mg/day to a 40mg taper. I think I’m experiencing side-effects of Cushing’s syndrome, but it’s nothing I haven’t been able to deal with so far. The worst for me is lack of sleep and inability to think clearly most of the time. I’d really love to stay home from work and rest, but I can’t afford not to work and the FMLA stuff is a much bigger pain for me than it’s ever been in the past. Liz stopped by with Chuck the other day at work and took a picture of us. I was a little shocked to see how awful I looked and that was me attempting to be cheerful. As much as I try to hide how bad I feel, it’s obvious I’m not doing great. I just keep checking my O2 and peakflow numbers when I feel worse because the last thing I need at work is to fall down, pass out or go into a full on attack. It would really freak some people out.
My local pulmonologist has been saying I could be on a maintenance dose of prednisone for a long time. I was really hoping that wouldn’t happen, but it’s starting to look more like a reality. I emailed my new lung doctor to update on what’s been happening and she apologized for suggesting I taper as quickly as I did, which my local doc agreed to. It’s not like it’s her fault and this occurred over the course of a month, not a week or days. I’m heading back to Pittsburgh in a few days. While I’m still on the dreaded drug, it is less than I was last visit. Hopefully I can get some suggestions on treatment or ideas as to anything else that could be ailing me.