Here, Piggy Piggy Piggy

I'd gone off the Ketoprofen with the doctor's okay. I've been quite proud of myself, too. Sure, I admit I've taken it a few times on an as-needed basis. I'm not "reliant" on it like I was for 4+ years, and that - at least to me - is something worthy of cheers.

I've been doing things in the last few months, pushing myself perhaps, things that I have been unable to do in several years. I planted some new flowers in my flower bed. I even constructed a new small wildflower bed for my youngest child. (I enlist the help of my husband and kids, but I'm doing a lot of the work I couldn't before.) I've gotten in the floor to play with my sweet baby niece, and I didn't get stuck there waiting for someone to pull me off the ground. The doctor has warned me, specifically with my hands, that I need to take it easy. That means, activity = pain. As much pain as I have felt over the course of my disease progression, not to mention the emotional distress of the disease and sudden (and gradual) lack of mobility, I am confident I can deal with the pain in exchange for the ABILITY to do these things.

A couple of days ago, I was standing in my house, talking to one of my kids, and I must have shifted my weight because I heard and felt a big pop in my left knee and left foot/ankle. (It didn't hurt.) Popping has been occurring more and more, which is another thing that seems "normal" to me again. My joints have always readily (and often involuntarily) popped. (I cannot bring myself to actually purposely pop any of my fingers for fear that I will faint from the shock of it.) Despite it not hurting in the moment, bedtime was another story. Both the knee and foot were aching, but not enough for me to get out of bed to take a pain med or anti-inflammatory - I was too sleepy. The morning of my next doctor visit, I could hardly bear weight on my foot when I woke up. Dammit, should have taken the ketoprofen. Fortunately, I had to get a few things done before shuffling the kids off and going to the doctor, so I pushed through the pain and within minutes my foot was feeling better - not healed, but better. I noticed that the more I walked, the less pain there was. After sitting for a few minutes, getting up and bearing weight hurt again. I had to drive to the doctor's office, so - despite my best efforts to appear normal - I hobbled into the office where my chipper nurse noticed right away that I was limping.

The consensus of both nurse and doctor was I shouldn't be off the ketoprofen. DAMMIT. Doc's logic was that I started the study taking it, and since I was actually having pain while in the office (first time for that in a while), that could be mistakenly attributed to "the study drug" rather than the lack of a med I had been certainly-taking. She wants me to take it through the course of the study so as not to "muddy the study results". That was a big, fat reminder of my status as a Guinea Pig.

My labs from last visit were all "great" and I really think I will wait until the next visit before I fully cave to resuming the ketoprofen. I'll take it more often between now and then, but not every day. I don't need it every day, and even if they aren't confident in that, I am. I know that something - either just the MTX or the MTX/study drug combination - is enabling me to be active again. I am fully aware that it is easy for me to overdo things, and to expect pain after certain activity (like a normal person). I am still reliant on a medication, but it's giving me so much more than the ketoprofen alone did, I'm okay with it.