The worst part is that my kids are sick, obviously. The second worst part is still being so sick myself. But the next worst part is not being able to get any handle on a routine, except for having to call the damn school every day to say that Emily is staying home with a migraine. That, Sucks. It is so defeating.
Sasha was doing better last month, February. Then she hit this patch. I mean, I've done that I guess, had a good month and paid out the nose for it the next month, but I didn't think that's how it's supposed to work when you're 7 and the new meds just seemed to kick in. And we have schoolwork to do.
I called UCSF today to tell them the new meds aren't working for Emily and that she just doesn't ever go to school anymore because it's finally been 6 weeks which is maybe enough time to change something but maybe not, and no one was there. They just changed facilities splitting the adult headache center from peds and the attending pediatric nurse is away until Monday. So I'll try again then when they're overwhelmed with calls from the weekend.
Meanwhile my new meds may actually be helping! I had about 4 good days in a row which is incredible. Everything's better when I feel better. I can take care of the kids and the house and think straight and everything. But this is why having a routine is so important. So when it hits the fan you at least have something to deviate From and some goal to get back To. And between everyone feeling like different levels of different kinds of crap at different times, we got nothin'. Which wastes time and energy. We don't have good days. I just keep track of how much crap who felt like and how many of what kind of rescue meds they took. And I try to make the kids learn things between threats of vomit, exhaustion, and pain. Which is of course easier to do when I don't have a migraine, or at least have a lesser one.
And then once in a blue moon I'll get an offer of "help" from someone and I just have no idea what to say because what even is there to say? What I need is a personal assistant to handle all my paperwork, and like, a household staff of 7 to organize everything and plant some pear and avocado trees and then of course take care of them and the rest of the garden they'd plant, and in that staff would be someone to finish all the unfinished details on the house like the uneven patch on the floor, the light fixture in the hallway, the living room that needs paint, the trim that's coming off the walls, the plumbing so we could get a dishwasher, and that list just goes on and on. Actually, someone to just help process all the food every Sat/Sun would be nice. But I promise you, no one wants to do that. What people mean by help is...I have no idea what. Easy things. And easy things don't exist in our world.
I just want it to end. Ugh, also Sasha's face is breaking out again. I think she may have had a build-up reaction to the new rescue med we were trying. I'm partly in denial. This can't be our life. It just keeps getting worse. Even when it seems to get better in some way, it just gets worse. I need real change from the root of these problems. Or I may lose my fucking mind.
