It was a beautiful day here today and I treated myself to an hour long walk through the park and my neighborhood.
I have to bribe myself to walk lately- I think a summer of laying on my rear thanks to a flare has killed my motivation. A couple weeks ago I figured out how to stream Pandora radio on my phone (my Ipod is MIA). So I type in ‘old school rap’ and walk through the neighborhood repressing my urge to start dancing and feeling like a badass. A badass who limps.
Can I please call that my pimp gimp?
Anyways, I was almost home this afternoon and a good song came on which necessitated an extra lap around the block. Because, you know, it’s just not as much fun to listen to a good song sitting still! In the course of that extra block, my left knee and left foot decided to mutiny.
I still haven’t been able to figure out how I can go from just fine to noticeably swollen in a matter of minutes. It’s cruel. It’s also evidence to me that I’m still having a lot of disease activity…
I have my last drug study appointment tomorrow. I will find out what medication I’ve been on although I already am convinced that I’m on the placebo. Why, you ask? Because it hasn’t done a damn thing for me. I feel like I’ve felt before- on the receding end of a really bad flare. I remember how I felt the first time I took Humira and while I don’t expect to feel such a difference everytime, I would expect to feel improvement. And I haven’t. So…the drug study wasn’t beneficial but it also wasn’t harmful.
So what’s next? My doctor wants to look at infusions. Specifically Remicade. I want to try Enbrel first for a couple of reasons. It would be so much easier for me to inject myself once a week than to go for a periodic three hour infusion. Infusion therapy also really scares me. I don’t want to try it until I’ve exhausted all easier resources. I realize that sounds silly.
I’m a little frustrated. From a lab-work perspective, my doctor says “you look great.” I’m still seronegative which baffles me but my doctor doesn’t seem to think that is significant. My CRP has dropped. On paper, everything is better. But physically, I’m still not where I was months ago. My feet and knees are still bothering me. My shoulder is too. Remember that hellishly awful joint aspiration awhile back? That ended up being a bust. Finger= just as swollen as it was before. The fatigue is better but the nausea can still be a tad bit on the ridiculous side. I’ve always had a sensitive stomach but it’s getting to be a running joke with my friends. And if a certain coworker makes one more pregnancy/morning sickness joke, I may need help hiding a body.
Stay tuned- I will be sure to let you know if (when) I’m right about the drug I’ve been receiving and what the plans moving forward will be.