Those are the days I am fighting the hardest."
That was on one of those cheesy quote things on Pinterest, but it fits.
It's been almost two months since my surgery. I am mostly recovered. Mostly.
My head still hurts, but I pretend it doesn't. Somedays, I'm fine. I would say that using the doctors scale, I am pretty much always at 2 but that's nothing all things considered. Occasionally, the pain gets up to a 7- maybe higher, and that sucks, but I deal with it. I had a disgusting scab on the side of my head from the brace that held my head in place during the surgery, that was awful. And it hurt a lot. It got infected and took 2 rounds of antibiotics to clear it up, but it's finally gone so that's one less thing to worry about.
My birthday was on July 21st. I had a seizure that day, because my body knows how to party. I've had a few more since then but they haven't been that bad. They've been quick 1-2 minute "did I actually have a seizure?" sort of things.
I have been stage managing at the theatre I used to act at (before my memory decided to suck). Josh and Becky (my co-parents) are in this show. I don't think either of them have actually experienced my seizures yet. I help Becky with her quick changes during this show- she is amazing in this show, you guys. It's "Legally Blonde: The Musical" and she is the cutest Elle in the world. Anyway, I go to help her with the quick change, and then next thing I know, I'm in the dressing room. Thank goodness one of my best friends and "certified Katiesitters", Christina, is also in the play, she took care of me and got me my medication. Randy happened to be watching the play that night. So at least I had my seizure the night my husband was in the audience, right? According to Becky and the other stage manager, I went down to take off Becky's shoe, and I just didn't come back up. Becky noticed I was not myself, told the other stage manager I needed her, because poor Becky had to then go on stage after seeing me shut down like that. Our stage managing team and another actor took care of me and got me to the dressing room and to Christina, and that's when I came to. I know that I missed about 15 minutes. When the stage manager was checking on me, she said I was like a shut down robot. She would say "Are you ok?" And I would repeat it. Things like that. So THAT is officially a seizure. No doubt about that one.
I had an appointment with my neurologist the other day. We went over all of this. All of the "was that a seizures" and that one big one. And how frustrated I am, but I know the surgery wasn't a miracle. I know it wasn't supposed to be an instant fix. She reminded us that it is still early. And that seizures as I heal are OK and totally acceptable. She read back the report from right before my surgery and how many auras I was having a day, and how many seizures I had a week and then said "You've had 4 seizures since June and it's still early." So... when she puts it like that, it's hard to be discouraged. The pain sucks and it's frustrating and she understands that.
We are going to work on the medication adjustments and see if that helps with the seizures. For the next year, the medications will be the focus. I'm OK with that if that means someday maybe there will be no medications and no more seizures.
We will see what the year brings. I struggle with the fact that I am still having seizures but my doctor made me feel much better about it. I still struggle with the fact that I can't drive- I can't wait until the day that I can just go run my errands when I need to run them. I think that's why it hits me harder sometimes. But it's ok. I am on the way to healing, and that's what I need to remember.
Side bar:
I was recently a guest on a podcast. Please check it out... And check out his other episodes. He's great.
Are We Okay?
