July 19 marked the one-year anniversary of my relationship with Imuran (aka, azathioprine). It’s been one hell of a time. The first two days were fab. The next several weeks were pure hell as Imuran was not going to allow me to keep anything down. MG was being its typical asshole self the whole time. Hair started coming out in a major way after four months or so on it. It was around that time that I started noticing that I was better able to make it through a few extra hours each day, but when I crashed, I crashed hard. Today, thanks to letting go of a major stressor (my former employer), and having a little more time to rest when I need to, things have become a bit more stable. I still crash, but it isn’t as difficult to recover. My hair no longer comes out in clumps, just cycles of major shedding then new growth (all gray ). I still occasionally experience bouts of nausea but all in all, Imuran and I are getting along to fight the MG demon. Perhaps this time next year I’ll be able to walk one or two miles of my former four-mile route around the lake.
The following conversation occurs frequently in this autoimmune-disease-riddled body.
Brain: We should work on these two little projects right now.
Body: No. Let’s go back to sleep.
Brain: We slept for 10 hours last night! You’re just being lazy. Come on. It’s just two things that will take no more than a couple of hours.
Body: No. We’re here on the couch. Let’s sleep.
Brain: I’m not liking you right now.
Body: You’ll get over it after a nap.
Brain: You tend to take epic naps. A nap is only an hour. Next thing you know, it’ll be 6 p.m. and we’ve accomplished nothing.
Body: Yes, we would’ve accomplished resting some more.
Body: (Stoic silence)
Since I’m not in a financial position to help, I thought I’d post a link to a fellow myasthenic’s page to extend the call out to others who might be in a better position. Autoimmune diseases really bite and when you have to battle more than one and have them treated by multiple doctors thanks to no one doctor being trained to treat them all, it becomes VERY EXPENSIVE!
Check it out and pass it on to others in your network.