So I rolled over in bed on Friday night and my right leg – the good one – hit David and felt creepy. (Creepy is a scientific term for when it feels like you are being touched through a wetsuit. You know you are being touched, but you can’t feel it properly.)
I have been to the neurologist a time or two in my day, so I made a critical medical decision and ordered David to get a safety pin and poke me with it. Sure enough, the poking did not hurt any part of my leg, but did hurt my arm. In the world of MS symptomology, this is what is known as Not Good.
So I handled this startling display of new leg symptoms in a decisive and proactive manner: I ignored it for an entire day, crawled into bed with the covers over my head for three hours, then went to a Bat Mitzvah party and started crying in the receiving line.
Luckily for me, my friend Nicole is the take-charge type. She got out of the receiving line, set me up with a glass of water and some Kleenex, and strongly encouraged me to call Kaiser right away. I did; they said I needed to be seen immediately; and I proceeded to go to the ER as instructed.
I was there for the next five hours.
David had a much worse time of it than I did. I had an adjustable bed, a Mr. Darcy story on my phone and an unlimited supply of heated blankets, while he was stuck in a chair with months-old issues of Nature and Sports Illustrated. (We both got juice, which was a plus.)
The problem with these situations is that I know the drill better than the medical team seems to. I know that new symptoms = a three- or five-day course of steroids in order to stop the symptoms from progressing. But the fine ER staff are not neurologists, and so they consulted with a neuro doc who does not know me and who told them to give me a dose of IV steroids and tell me to wait to hear from the neurology department for further instructions. This would not be bad advice in a perfect world, but in a world where the case manager has a family emergency and doesn’t call me and I need to go to California for a funeral and the steroids are causing me to be really, really agitated… well, let’s just say that I have felt terrible and been mighty unpleasant to live with.
So what now? Well, today everything shook down as I wished it had 48 hours ago, and I have a prescription for three days of prednisone fun, a future appointment with my neurologist, and a feeling that there are people who actually care about my well-being. But now I feel like the past days of getting-over-steroids have been all for nothing, I will have to travel tomorrow while all looped on prednisone (and with a kid in a wheelchair), and when I get to California, I may or may not feel like visiting with my family, whom I have been longing to see.
So I’m mad. I’m frustrated, I’m cranky, I’m disappointed, I’m tired and I’m not looking forward to the next three days. Most of all, I feel like if all had gone according to protocol, today would have been the end of the nightmare, not the beginning.
I’m grateful to the Powers That Be at WordPress.com for realizing that my beautiful sister is an extraordinary writer and for Freshly Pressing her one-and-only post. The joy and absurdity of it all has lightened up a couple of really hard days.
I’m also grateful, of course, for the photo by tj scenes.