I’ve been wanting to have a minute to report in on my first infusion with the new goo, more formally known as recently FDA-approved multiple sclerosis DMT, Ocrevus. But I’ve struggled to find the time. Busy with work, busy with home, busy with…not feeling like utter shit.
I know. Crazy right?
I’m not going all ga-ga just yet. I know nothing can work this fast and the semi-human feeling I am experiencing these last couple of days could very well be the result of that teeny tiny dose of Solumedrol that they give you along with your first Ocrevus infusion.
The Great Scott, aka TGS my crazy brilliant neurologist, and I argue pretty regularly about my opinion of my body’s reaction to Solumedrol. He claims there is clinically no difference between the outcome/effects of IV steroids versus high-dose oral steroids. My personal experience contradicts this expert opinion (he really is an expert, that TGS, that is not at all sarcastic). But Solumedrol is like magic in my veins that makes me feel like a real human girl instantly – if only for a short time. Oral steroids make me feel like I’ve taken some bad speeders from a street dealer. So I’m not discounting the fact that the tiny dose of the magical IV steroid elixir I received on Monday might be contributing to this not-like-utter-shit feeling.
But it’s still a good sign.
It’s not like I’m not in pain today. I am. It’s not like I’m not tired today. I am quite tired. It’s not like my legs are walking machines looking for the nearest track so they can run a few miles or at least speed walk a few blocks. They are not.
But I did have two decent days in a row. Did I overdo it because it’s been so long that I’ve felt like anything but utter shit?
Well, yes. Yes I did. But it feels oddly good to be so exhausted. It’s the good kind of exhausted not the utterly defeated kind of exhausted. Yesterday, for example, I both changed the sheets on my bed (speaking of which, there is a really good reason why a girl who has three partially black cats probably should pass on pristine white bedding…ew) AND I took a shower to prepare for going into the office today for the first time in over a week.
It hurt. Don’t get me wrong. It hurt a lot. Halfway through the sheet changing my lower back was on fire and I had to sit a couple of times before it was done. But I did it.
I did an “and” and not an “or” and it did not kill me.
Today, I put on clothing and left my house for more than two hours! OK. By clothing, I mean the exact same outfit I wore to my client meeting on Friday afternoon, that consisted of black leggings, a black tunic and black tennis shoes but that still almost counts. And by leaving the house, I mean I went to work in my actual office location and not my living room.
But I was actively out in the world for more hours today than I have been in weeks.
I didn’t curse the sun. I left my house before 11AM. I wanted to hug every person in my office (I resisted because, well, HR frowns on that but I wanted to). I woke up with three new old lady zits on my face and I kind of just ignored them and remembered I have mad make-up skills and I covered those babies like a pro. I participated in several meetings and didn’t struggle to concentrate or stumble over my words (without Modafinil).I wore giant sunglasses. I sang in the car with the top down.
When I came home, I didn’t crawl up the stairs after scooping litter on two levels of my house. I didn’t take the steps two at a time or anything and I went slow as hell, but I didn’t feel like the walking dead.
I will likely be in bed by 9PM tonight. It’s supposed to rain tomorrow. I love the rain. I hope it starts raining tonight so I can listen to it while I drift off to sleep.
Today didn’t suck. Thanks for that, today. I needed that.