No One Expects This

I got sick 8 1/2ears ago. The first 2 1/2 years were pretty scary, four years were fairly calm, and the last two have been a slow slide downwards. Then I experienced the mother of all flare-ups and it just. won’t. stop.

My disease hit my spine and sacroiliac over a month ago. I am a fairly tough cookie and can keep going through serious physical discomfort (I worked for 3 days and then flew home with E. Coli before going to the hospital — because I’m an idiot), but this stopped me.

I was flat on my back, literally screaming out loud in pain if I moved at all. The doctor put me on a major steroid burst which gave me wonderful relief, but now I can’t taper off the steroids without the pain coming back. The steroids cause immediate and long-term problems and I don’t want to live on them, however, without them I have no life.

I used the extra energy from the steroid burst to get my actual house in order and am trying to make my life as simple as possible in case I’m no longer able to function or work.

Even though I’ve been gradually declining for two years, I didn’t see this coming. I don’t want it, I don’t like it, and I’m kind of in denial. I’m doing what I need to do to prepare for a life of 100% disability without believing that I’ll be disabled. Maybe that’s a healthy coping mechanism?

The doctor thinks we won’t get this under control soon and that it’s gonna be a bumpy ride. Well, dang.