A month ago, I was flying high. My sats were up (96 on room air, the best since this whole thing started!) And my prednisone was down (7½ mg and moving lower).
Then, I caught a nasty stomach flu that laid me out for 2 full days. I went 48 hours without prednisone, inhalers or nebulizer treatments. By the 3rd day, I felt human enough to go back to work and start my meds again. On day 4, the wheezing began. By day 5, I got winded just walking from the bed to the bathroom. I wore my canula around the house that weekend, called the doc to bump up my prednisone and wondered how everything could go so wrong so fast.
Things have been rocky ever since. Just when I think I have a successful taper going on my prednisone, I’ll feel a little rattle start. I ignored it for 3 days last time, until it escalated to a constant wheeze. Bump — back up to 30 mg. I started tapering again this weekend. Keep your fingers crossed that my lungs stay clear!
In the meantime, I watch the weather, hoping for mild temperatures. Cold air is especially tough with pulmonary fibrosis. It constricts everything, which makes it harder to breath. Lately, my lungs have felt smoky – it’s the only way I can think to describe it. They feel full, not with sticky goo, but with something that simply makes the air inside them feel heavy.
The prednisone is kicking my ass, too. Luckily, I don’t have the usual side effects like water retention, moon face or even elevated blood sugar. I do, however, deal with insomnia. I discovered that 10 mg of melatonin helps me drift off if I take it right at bedtime. Unfortunately, if I forget and try to take it once the insomnia takes hold, it’s pretty useless.
The real killer for me, though, is the muscle spasms. They’re like nothing I’ve ever experienced before, catching me completely off-guard, gripping tight and refusing to let go. My fingers and toes will suddenly rearrange themselves at awkward angles, or a charley horse will turn my calf or the arch of my foot into a tight ball. But the worst by far is my torso. Muscles spasm in random patterns from my spine around to my stomach, making it hard to breathe. Simply rolling over in bed can tie me up in knots. Aleve helps, but I worry about what daily doses will do to my stomach. I’m also trying to up my potassium intake – I just haven’t found the magic formula yet.
I don’t mean to sound gloomy, because I’m really doing pretty well. It was just a huge shock to suddenly realize how fragile things are now. I never really thought about my health, but it needs to be a daily focus now. Getting myself ready physically, emotionally and mentally for both the progression of my disease and the eventual lung transplant I hope will one day save my life – that’s priority #1. It’s hard to think that… to actually write that knowing I have two teens at home who are trying to muddle through one of the most difficult times of their young lives. I’ve really struggled trying to balance my needs with theirs. One more knife edge I have to navigate daily.
What about you? What do you have to work at to keep in balance?