I’m listening to an AS sufferer recount his story in a YouTube video as I begin to type this post…he says he’s scared of chairs, beds…because he never knows what will make him hurt. I like this guy because he’s sharing his story, trying to help others…and when you watch his videos, he’s striking to me. A man in his forties, ball cap on, looks like he could be a firefighter or something…he’s normal, looks strong…and he’s describing exactly what my sister has gone through, and he’s telling it like it is.
If you have time, check out his video–it’s a very informative story about how AS started for him.
I follow Hurt Blogger on Facebook, who champions all causes related to autoimmune arthritis. Here she is stocking up on her meds on December 31st, as she had reached her out-of-pocket maximum months ago thanks in part to chemotherapy bills reaching $88k (imagine her co-pay!)…
She reminds me of my sister…young and healthy looking, like the guy in the YouTube video. If you follow her on fb, she has the most beautiful and vibrant smile in her profile picture. Just like the man, just like my sister, she looks healthy, doesn’t she?
TiffeeG starts Remicade tomorrow, after spending most of the past year on Enbrel and Humira with no results. Her husband is taking her to the first session (Remicade is IV-infused, so she has to go to St. Luke’s for it instead of self-injecting at home like she did with the other meds). I have told her that I will go with her to keep her company next time. I know she is nervous and not sure what to expect. We all are…
I hate to “talk it up” with her and be too rah-rah-rah about it, because we all did that with the Enbrel and Humira and then felt so disappointed when they didn’t help. This disease is stubborn, and we have learned over the past year that there is no one approach or treatment that works for everyone. I’ve tempered my expectations, my prayers and my pep talks. I’ve gone from oh please Lord make it go away to oh please Lord just make it better for today. I’ve felt like if I get too excited and give too enthusiastic a pep talk, that she ends up all the more disappointed when the meds don’t work, which I know is ridiculous, because she’s the one who is hurting and little conversations with me won’t affect her hope one bit. So I’ve tried not to say too much this time. I’ve tried to be the quiet cheerleader.
But secretly (and now I guess not so secretly!)? I’m praying for a home run with this medicine, an inflammation sucker punch, a calcification knockout blow. I’m going to pray tonight for Remicade to flow through her veins and kick ass in her body like Rocky taking out Mr. T. I know it won’t be immediate, and I’m willing to be patient, but I’m going to visualize that medicine lifting away her pain like Michael Clarke Duncan blowing out the evil in The Green Mile (ever read that book, by the way? Incredible…I totally recommend it).
She started physical therapy last week again, and this time seems to have a really nice and knowledgeable therapist, so our fingers are crossed there. The therapist told her that she could use the T.E.N.S. unit that I gave her all the time for relief and that she can just crank it up until it starts to help. Did I mention that it’s portable? We had a good laugh as she described running errands with that thing on and wires hanging out of her back…hot stuff!
I will keep you posted on the Remicade sessions.
As for the running, I ended up doing 8.5 miles for my long run on Friday, and I tried my very best to slow down (I kept it to an average 10:21 pace). I know I’ve been running my long runs too fast, and I read something that said that if you’re running them too fast, you are actually hurting your ability to build endurance and won’t be able to run the last 6.2 on race day. It seems so counterintuitive to me, but I am keeping in mind that the mileage is still so low…I need to follow the program and the paces. Endurance is just like speed…it must be built from the ground up, and I’m not going to build it if I’m running my long runs too fast. Right? Right? I sure hope so. It’s just tough, because the second I start to let my mind wander and relax into the run, I start to run faster, so then I have to refocus and tell myself to slow down, which takes a bit of the fun out of the run because I’m not just letting my mind go and zoning out (the best part of runs for me).
I would appreciate any input or advice from any seasoned runners who might be reading!
Miles logged: 59.5