Thursday, February 4, 2016


Trying to harness my thoughts into cohesive paragraphs is like trying to force a many-dimensional, multi-colored object onto a single-colored straight line.  Like, really?  Even if I were Bruce Banner with Thor as my sous chef, I'm not sure I can pull this one off.  My mindstone is broken.  Emily's mindstone has turned to soup.  Sasha's mindstone...well, we were never sure what universe she came from anyway, but it appears that her mindstone is showing the faintest signs of repair.

I'm not even sure where to start unpacking from, but my head hurt from January 20 to February 1.  It wasn't all intense, but a lot of it was.  An awful lot.  I didn't take rescue meds all 13 of those days, but I took meds most of those days.  The longest my head has hurt before that was 9 days, so, new record I guess.  I wonder if my neurologist is going to be upset at me for not coming in.  But there were storms, there was the UCSF trip and then the recovery, and then of course hormone week and recovery and more storms.  I just wonder if the REALLY shitty preventatives are in my future because of this.  I wonder if this is a bigger deal than I think, a lesser deal, or just kind of where we are.  T-minus one week until my next appointment.

Sasha has been on the full dose of her new med since January 16, and the average number of her frequent head pain is down from a 5 to a 2-3.  We are going to try a new rescue med to hopefully cut back on possible medicine overuse headaches.  She is becoming more functional as a human being too, although she has been behaviorally kind of awful lately.  That's probably from trialling a new food we were oh-so-hopeful about.  Oh well.  We'll take lesser and possibly fewer migraines.  One less thing.

Emily is in the shithouse.  Something broke.  Emily started getting migraines again in October or something and it's just gotten worse and worse and now she's just fatigued every minute of every day and I don't think she's made it to an entire week of school since Christmas break.  We've upped the meds and added meds and now we're doing a 504 plan at school as a last-ditch effort to keep her there because God Forbid I have to homeschool her too.  But really, I'm already mentally preparing.

So, we're definitely not taking anything day by day.  That would require teams of support we just don't have.  I'm probably only processing things on an hourly basis.  Everything I've ever dreamed of doing has slowly and quietly floated away.  I mean, thank God my head hasn't actively hurt for 3 whole damn days now, so I can more effectively manage the girls' pain, nausea, fatigue and fucking irritability, and stress the hell out of myself trying to see that they're educated and oh yeah fed things that won't kill them!

I'm really not sure how we're going to make it one more night, and one more morning, mid-morning, noon, afternoon, and evening.  I guess there's always the chance that someone will feel better at some point, and a tiny part of the nightmare will be over for a minute or two.