He called me. He actually called me himself. He didn’t sic Evil Nurse Carol on me, The Great Scott all powerful and good called me back his very own self.
I explained more about my situation. The intense pain. The inability to stand for very long (like less than ten minutes). The weird numbness in my hands. My fatigue hasn’t been bad at all and my walking wasn’t terrible (thanks Ampyra) but I was so weak I could hardly stand so that kind of prevented any distance walking right there.
He listened intently. He explained his point of view, bestowed on me from on high, as he is wont to do. He believes I’m experiencing a relapse. He thinks the two month flush was the thing that allowed it to happen on top of the fact that we both thought Tysabri wasn’t really doing all that much for me over the course of 15 months I’d been taking it. Then he explained that the Ocrevus can’t be to blame, rather it was probably benefitting my fatigue levels a bit (he’s heard this anecdotally from the infusion nurses who report on patient response to the new goo).
“Well, Maribeth,” TGS said to me in the dulcet tones of the expert, “I had hoped to avoid this but you keep giving me new challenges so I think we’re going to give you a little hit of steroids to help cut this relapse short. You’ve done well on them in the past. We need to get you feeling a bit better don’t we?”
I really give TGS a bad rap. He’s really quite wonderful when he’s not arguing with me and my well-researched points of view.
I’m on low dose steroids (50 mg once a day for ten days). This means stomache drugs to ease the side effects of the Prednisone and a sleeping pill to make sure I’m not up 24 hours a day. My nightstand medical drawer runneth over but if this gets me through my eventful next week of work, it will be worth it.
It will be worth the bloated face and swollen feet and hands. It will be worth torturing my liver for a little longer. After all, didn’t we just learn that I have a crazy healthy liver thanks to that awesome Hepatitus B scare? Why yes! Yes we did. My liver can take it.
I’m praying this little boost juices me up enough to get through two big days next week. Client dinner on Wednesday night with visiting dignitaries. All day office festivities on Thursday culminating in the official Grand Opening open house at the new and improved Moxie Pittsburgh offices. I’m not even being remotely sarcastic when I tell you I’m really looking forward to both! I honestly wasn’t sure how I was going to pull it off with the shape I’ve been in lately. I might have been able to fake one day, but both was an exercise in magical thinking even for me, the High Preistus of Magical Thinking.
I’m hoping Vitamin P doesn’t let me down. I know so many people who hate being out on the steroids. I personally wish I could take them all the time. I’d get used to having a giant fat face and swollen body parts, I really would. Just to not be in pain for a little while and to be able to function almost like I used to is reason enough to put up with a little bloaty mcbloat face. I’m losing my death grip on vanity, it would seem.
And who am I kidding? I can’t come close to anything near what I used to do. That ship has sailed, thanks to my busted central nervous system. But I can come close to being enough. Enough to feel happy and confident that I did a good job. I guess I never realized before how important that is to me. I guess I just took it for granted.
So, if I do anything terribly inappropriate at the big office party I can always blame it on roid rage. If Vitamin P isn’t enough to hold me up and I take a fantastic tumble or have to sit all night, I can blame that on my stupid disease but I’m really hoping to feel well enough to actually have fun.
Remember that? Having fun? I used to be pretty good at that. I hope I remember how.
I think the thing about The Great Scott that I love the most is how he always manages to give me that other thing I seem to run out of a lot lately.
That would be the most elusive drug of all. The one that doesn’t fit in my nightstand. Hope. He gives me hope. That’s what makes him truly great in my book.