The last time I wrote, things were going thankfully slow and uneventful. If there is something I’ve learned in these years however, it’s that that can change in a heartbeat. Boy did it change a few weeks ago. 

I started having signs of a new flare a couple of weeks ago with more pronounced pain and weakness starting to settle in. My brain fog got much worse, although since it’s always there it’s never really easy to know when it is actually changing one way or another. It’s a lot like walking in the dark and tripping over a bunch of stuff. You know that you’re likely to trip, you just don’t know how bad it’s going to hurt. I also fell…sort of..ok yea I fell. But I’m 29 years old so keep that to yourself.
I ended up going through a week where I had increased difficulty swallowing food or liquid and having increased breathing issues. The physical therapists I’ve seen since this summer have been absolutely fantastic battling my trouble breathing, and without them this probably would have gotten much worse sooner than it did. Nevertheless, I contacted my primary doc and rheumy on Saturday the 4th and was admitted back to the University of Kansas Medical Center for observation and to try and put a lid on my emerging flare. This is a situation that is never really desirable because it involves mega-doses of steroids over a short period of time. I can only describe what that feels like as ‘uncomfortable and consistently being shocked or charged’.

I ended up getting out on November 8th, election day with enough treatment to hopefully carry me through to November 11th, which would be my first Rituxan infusion since May. This is one of the heavy hitters in my regiment, and being close to the six month infusion mark is likely why I had started to go into another flare. I have a second infusion scheduled for a week from Friday and that’s it for this maintenance dose until early summer. I may have to either start getting the Rituxan sooner in the cycle or supplement it somehow in the weeks leading up with IVIG, I’m not sure. As with so many other things, we make adjustments on the fly. All of us with this disorder are the guinea pigs, going through the ups and downs in the hope that maybe future generations will have a better time, a standardized treatment. In the meantime, I for one am absolutely thankful for every day that I get to wake up and enjoy. 

My mother visited this last week from Texas, my father was able to come by some and I got more moments than normal to forget what happens to my body inside. It’s hard to express to others what it means when they send you an extra message, stay an extra hour or say an extra prayer. I think many of you feel the same way, that it’s difficult to impose. We want to stay normal, not let on that this hurts and that we’re lonely and long for the life we once led. I, like others, am still trying to find my voice on that so that people can know that their actions mean so much to my recovery and well-being.

This week has been a rough one, as expected after the infusion. I think I might be getting sick, I’m exhausted and I feel like I might have been hit my a truck at some point I don’t quite recall. But tomorrow I’ll wake up again, and I couldn’t be more thankful.