I haven’t been remarking on my continuing Spinraza treatments. Mostly because the trouble I’ve had in staying on the table long enough to let the doctors find an access point hasn’t changed much. I can’t manage to stay on the table longer than a couple hours and if they can get it done in that amount of time, things work just fine. I have had to reschedule an injection about three or four times now. Yesterday was my seventh shot and I didn’t manage to get it done. It is discouraging to do everything I need to do to get to Stanford and then have to reschedule. I know it’s not my fault, but it’s very difficult for me not to feel responsible. I’m sure a lot of this is internalized male baloney, but there you go.
I really wanted this injection to work, because
loracs, my partner, is getting a knee replacement (which is also freaking me out!) on Thursday and she does some of my care and it will be difficult to get to Stanford for another try. I hope all of you are having an easier time of it. I know I’m not alone in the frustration of these treatments can cause at times.