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pills and weather and all that.
Aug. 6th, 2013 12:11 amGuh, it seems like all I've been posting about lately is drugs but such is life at the moment. I've been switched to Rituxan for my infusion drug and have had my two loading doses and didn't react at all which bodes well for my ability to receive it, now it's just a matter of whether or not it will work. My next infusion isn't until November which weirds me out a bit that I've got to go so long but I see Dr. Gorman again in September as apparently we should see results around then so we can decide "it may be working, let's give it a bit", "it may be working, but let's augment it a bit with inject-able Methotrexate (oral MTX made me super sick and had no effect but since we're reaching the end of options save clinical trials, we're hoping injections will have better results)", or "this is bunk, back to the drawing board." It's been about ten days since my last dose and after the steroids wore off it seemed like maybe there was a glimmer for a few days, but the "heat" wave we've been having roared back yesterday and so did my symptoms. I've also got a bit of a rash going on my face which is either a heat rash or my first honest-to-goodness Malar rash (hallmark of Lupus). And I'm still having my "I don't want to get hooked on these drugs/why in God's name am I resisting these drugs that make life bearable" struggle. Poo.
But there have been good things. I made it back to yoga after about a month or so away and the class went way better than I was anticipating. I was telling Pamela (my teacher) after class "I think I've finally reached the point where I'm honestly OK not being able to do certain things/accept limitations rather than claiming I am and actually having it bug the Hell out of me" and she said "that's all I want for any of my students! Yay!" then went on to tell me how thrilled she is when I'm in class because I'm a wonderful teacher for her. She said with all I go through, to still come to class is inspiring and that she's learned some new modifications/versions of modifications by watching me that helps to make her a better teacher. I'm awful with accepting compliments, but that was a pretty damn good one.
Voice lessons are also going well. Margie reminds me a lot of Lori, my high school private instructor, in the way she approaches my issues and her teaching style. For me visualization is an important learning tool and she gives great examples and knows how to get me to get it...if that makes sense. I signed up to audition for a local repertory group and my terror at auditioning for the first time in over 15 years is diminishing ever so slightly. When I joined with Opera Pacifica 8 (?)-ish years ago, I just went to the music director's house for a trial private lesson and he asked me to join the chorus about halfway through. I didn't have to audition for any of my bands because I either started them or pointed people to recordings and they asked for me. So it's a daunting task! Though Margie (who is actually the accompanist for the group) told me it was just the director in the audition and that he'd be my accompanist/take me through whatever exercises which calmed me a bit knowing there wasn't going to be a panel there. A little more low-key, which is nice. I got myself a new dress for the audition in the hopes that if I *feel* like a badass I will perform like one :)
Mr. Mayden and I did make a bad, BAD choice last weekend though; a friend of ours thought it would be a cool idea to get 25 people together to buy the 25 different milkshake flavors at Sonic and everyone tries a spoonful of each flavor and then you finish the flavor you bought afterward. We each had 25 plastic spoons so there'd be a fresh spoon for each person and each flavor. I had thought "if you bought a milkshake and ate it with a spoon, it would totally be at least 25 spoonfuls, what could go wrong?" LOTS, the answer is LOTS. For the next 36 hours or so it was revenge of the milkshakes. I don't know if it was all the different flavors or that some had gotten pretty melty in the journey around the circle but my God I felt sick & I'm not lactose intolerant in any way nor is Paul. So good idea in theory, not so much in practice. But it was nice to get out and see some folks I hadn't seen for a while.
But there have been good things. I made it back to yoga after about a month or so away and the class went way better than I was anticipating. I was telling Pamela (my teacher) after class "I think I've finally reached the point where I'm honestly OK not being able to do certain things/accept limitations rather than claiming I am and actually having it bug the Hell out of me" and she said "that's all I want for any of my students! Yay!" then went on to tell me how thrilled she is when I'm in class because I'm a wonderful teacher for her. She said with all I go through, to still come to class is inspiring and that she's learned some new modifications/versions of modifications by watching me that helps to make her a better teacher. I'm awful with accepting compliments, but that was a pretty damn good one.
Voice lessons are also going well. Margie reminds me a lot of Lori, my high school private instructor, in the way she approaches my issues and her teaching style. For me visualization is an important learning tool and she gives great examples and knows how to get me to get it...if that makes sense. I signed up to audition for a local repertory group and my terror at auditioning for the first time in over 15 years is diminishing ever so slightly. When I joined with Opera Pacifica 8 (?)-ish years ago, I just went to the music director's house for a trial private lesson and he asked me to join the chorus about halfway through. I didn't have to audition for any of my bands because I either started them or pointed people to recordings and they asked for me. So it's a daunting task! Though Margie (who is actually the accompanist for the group) told me it was just the director in the audition and that he'd be my accompanist/take me through whatever exercises which calmed me a bit knowing there wasn't going to be a panel there. A little more low-key, which is nice. I got myself a new dress for the audition in the hopes that if I *feel* like a badass I will perform like one :)
Mr. Mayden and I did make a bad, BAD choice last weekend though; a friend of ours thought it would be a cool idea to get 25 people together to buy the 25 different milkshake flavors at Sonic and everyone tries a spoonful of each flavor and then you finish the flavor you bought afterward. We each had 25 plastic spoons so there'd be a fresh spoon for each person and each flavor. I had thought "if you bought a milkshake and ate it with a spoon, it would totally be at least 25 spoonfuls, what could go wrong?" LOTS, the answer is LOTS. For the next 36 hours or so it was revenge of the milkshakes. I don't know if it was all the different flavors or that some had gotten pretty melty in the journey around the circle but my God I felt sick & I'm not lactose intolerant in any way nor is Paul. So good idea in theory, not so much in practice. But it was nice to get out and see some folks I hadn't seen for a while.
