Wednesday, June 22, 2016


Today is the worst Sasha has felt all week, and she still avoided rescue meds and drastic measures.  Some of her suffering may have been avoided if we hadn't gone to the library when the therapy dogs were there, but what's the point of living if you can't even have therapy dogs?  Although, maybe leaving early wasn't the worst idea, which was due to Emily's abdominal migraine.  Still, it was success in several ways.

I am trying my darndest to avoid rescue meds myself this evening.  April, May, and June have been crap.  Yesterday was declared a "relax day" since we had been out and about a bit, due to Sasha's feeling better and some family visiting, doctor appointments and errands etc.  My relax day activities included a few loads of laundry spread throughout the day, but it was enough to kick my butt today.  Ah, the spoonie life.  It pisses me off.  I am happy to see neatly folded piles of dishcloths and unpaper towels, but upset that it comes with such a steep price.  But it's not just the laundry, it's the fact I processed greens and made and then froze two pots of soup earlier this week, plus plus plus plus plus....COME ON BODY!!!

But back to the kids, it's absolutely thrilling that Sasha has had so many good days in a row.  Seven counting today, although she did fight nausea for maybe half of it.  That's still not the worst and not even average.  It's so much less stressful when she's not suffering constantly.  So maybe some combination of probiotics and cleaning her out were helpful?  Or maybe it's the lack of having to do schoolworks?  Maybe it's just a fluke?!?!!!   Only time will tell.  Now if Emily would start feeling better.

Physical therapy is kicking my head, neck, and shoulders, to very little avail yet.  Last round it cut rescue med days in half, so I'm hanging in and doing my exercises and icing like the Queen of Narnia.  Again with the dumb patience.  But honestly, suffering together has been kind of a life raft for us.  We had to leave the library early for Emily when Sasha would rather have stayed, but I reminded her how much Em takes care of her when she's not feeling well, and it wasn't an issue.  And when I go through my cycles of more and less energy, the kids aren't demanding at all.  They just ask how I'm feeling and always wish me to feel better, and give hugs and kisses.  And we pray together a lot.

And even tho we're on summer break, Emily was home with Sasha and I for most of the school year even before she was officially homeschooled, which has made us closer as a family.  We very much take turns paddling.  Sometimes we just drift, then have to deal with where we've ended up.  Not to sound too much like Captain America (who totally ISN'T a Hydra agent btw, that's copout garbage) but whatever we do, we do together.  The girls are still hilarious and quick-witted, and while we'd rather our raft be at Disneyland, at least we're tangled in the weeds with good company.  Bonus, Steven gets to visit this weekend.  It's nice when he paddles for a while.

Gah, I need to ice my head.  Peace out homies.

Thursday, June 2, 2016

Thrift Store Vinyl

Ya well,  that was all very new wasn't it?  May was a total transition month.  Our homeschool year officially finished which is probably why Sasha has now gone two days in a row sans rescue meds, and we made it to UCSF and back where we learned that Emily will start seeing Sasha's neurologist.  Em's neurologist is moving away to be near family.  I like her, but I also like Sasha's neurologist, and this will really smooth our appointment schedule over.  Also, Sasha's neurologist reminds me of my brother, double bonus.  However, Em's current neuro is a woman, and girls are generally smarter than boys so...I'll just hope for the best. (;

When Steven first kept reminding me to let him know when the appointment was so he could take leave and come with us, I assumed my mom would still go, because as much as I appreciate Steven's current efforts at not being a dumbass, I still doubted things like his driving skills and general effectiveness at being...aware.  UCSF days are incredibly hard for me, what with the food planning and packing it requires, and the management on the day of it takes.  I've never not had a migraine due to the trip.  But as the day drew nearer, my trust in Steven's abilities grew, and I let mom off the hook.  And with his help, I didn't get a migraine the day before during packing, the day of, or even the whole rest of the week.  We even had to run the girls around to labs after their appointments!  The day was a success in many ways.

We're not shaking the earth with the girls' meds presently, just ruling things out beside migraine for their fatigue and nausea/abdominal drama, but I suspect it's all just migraine.  We're at the best we can hope for with Sasha's current or any med really, since her frequency and severity of migraine have been reduced, which sucks because she suffers every day still.  Pretty much the same with Em.  In other words, we're at the "grasping at straws" stage where we rule out everything else and then slog through the list of meds just to see if any one of the others works better and pray that none of them have worse side effects.  So that sucks.  The upside is that they're eating, drinking water, peeing, pooping, growing, learning, and no one's living out of a hospital.  These are HUGE. HUUUUUUUGE!!  So we'll traipse to all the specialists within reasonable diving distance because this is our life now, and then do nerd stuff because it's fun and awesome and also because I have to prove to the state that they learn sufficiently and we're just into the habit now so why not?  More #geometryourfacesoff coming to you soon.

I'm back in physical therapy for migraine, which is fantastic.  My therapist thinks I should go rock wall climbing, which sounds fun.  I told him I'd love it and would give myself a migraine doing it but was game anyway, so we'll see.  I actually don't see how it could possibly be a good idea, but of all the ways I give myself migraines, that sounds more fun than "folded too much laundry", by at least 50 or 65 points.

I have no great plans for the summer, except for rocking survival mode.  I'd like to get fewer migraines and I'd like the girls to have more good days.  But there will be food to process and appointments to attend, all kinds of walls to climb and meds and methods to trial.  We have a Steven now and a Steven is a good thing.  Maybe when that is a true statement for as long as it was a false statement, I will be accustomed to it.  It is a blessed and wonderful thing, to have a willing and supportive partner.  Every day is still hard, but not as hard.  The hardest part is having to keep such a tight reign on Sasha, who when she overdoes it can still get a killer pain, vomit everywhere, up all night, shitfest of a migraine.  It's heartbreaking.  Incidentally she is also the one allergic to America.  Between her existence and me having to take a nap in the middle of every day, we tend to leave the house as little as possible.  Pray for that kid, and for us.

ps.  If anyone wants to go to the thrift store and find me useless old colored vinyl records, I would really appreciate it.  Sasha wants to make more fortune cookies.