Never Have I Ever

It's not that trump got the most electoral votes, it's that so many people voted for him.  And for those saying "This is how democracy works!", I beg to differ.  This is how democracy is broken.  Hillary is winning the popular vote.  Still, that it's by such a slim margin is where my discomfort lies.  I must ask how this happened, how such a vile, lying hate monger triumphed.  I guess it's the same story told over and over.  We humans never learn, and are doomed to repeat history and song and tale until our dying day, may it be ever so swift.

When I say ignorance and hate prevailed, I don't mean in some unplaceable way.  I mean people either truly cannot grasp that trump is racist, or they find it completely acceptable.  I have personally spoken with more people than I care to count who have denied he is the textbook definition of racist.  Of course, they were all white people.  Privilege white people who probably also lack the self-awareness to realize their own privilege.  They run our country now, because they think it it somehow "their" country.  Unfuckingbelievable.

Same goes for trump's hate for women, muslims, the disabled, pretty much anyone who isn't a rich, white, land-owning male.  Denial or complete acceptance.  And I know what he means when he wants to make America anything again.  It cannot be a surprise that educated people voted against him.  You know, if you can read, write, have ever taken medicine, never got polio, or use modern plumbing, that educated people made that possible?  Just sayin.

Even human vileness aside, the man's policies are rubbish, by every single expert account.  We're talking catastrophic failure, please fact check me.  And now that it's a Republican controlled congress, I'm not sure how great those checks and balances are going to work out.  What the hell just happened?  Did people not realize this would happen?  This is the extent of America's ignorance and hate.  It is inexcusable, indefensible, and I have never in my life been more ashamed to be American.
Oh, and the christians who say Jesus is still king, do they not realize that Jesus was also king during the holocaust?  During all the wars and genocides that are still happening?  It's white male christians who were so gung ho about about trump!  Fail, by every account.  And now America will reap what it has sewn, because Jesus is king, and consequences exist.

This will never be ok.  Let us never bow to voices calling us to say this is ok.  Ignorance is not ok, let us continue to learn and love the truth.  Hate is not ok, let us love with words and actions which are often difficult and uncomfortable.  And let us stand always, not for the privileged who have always had a voice and been in power, but for the powerless and unheard.

Pretty Colors

Jesus, H, Christ.  Thank the good Lord that Sasha's head came under control, via my brain tiara which is approved for children as young as 8...everywhere in the world except for the US.  But I care?  She's taken pain meds once in the week or so since she started using it.  Once, down from 28 pain med days (sometimes more than once a day) out of the previous 48.  It's a freaking TENS unit with no side effects other than sleepiness, thank God.  We were having hellish nights of being up till 1, or getting up between 11 and 3 in pain, and now her head pain is negligible.  She still has abdominal pain, but it has been manageable.  So we'll see how this goes and pray the neurologist doesn't yell at me.   Shoot, I have meds prescribed for both girls that aren't approved for minors that absolutely DO have known side effects, so eff that mess, the fda can suck it.

It probably says a lot that I'm looking forward to my root canal tomorrow.  Like, a lot.  My dentist's chairs are Super comfortable, and I get to relax in one with two pairs of sunglasses on and get my sore tooth fixed.  I don't even understand, I had a small cavity in the side of a tooth that my dentist was confused as to how I even got, he filled it, and it got infected and now I need a root canal.  I guess I'm not confused, I've just never had that happen.  But there is so much good tooth left I may not even need a cap, and it's supposed to be one of the easiest teeth to um, root out or canal or whatever.  But prayers are still appreciated.  I've had a migraine for near a week due to our first foray to the friday market plus heat plus hormones, and I really need to be up to hitting the next friday market to search for pears.

And then there's my ever broken freeze dryer.  *smh*  Stupid Harvest Right was supposed to call me today and walk me through ANOTHER repair to try, but they didn't call.  I really need that thing to have been working, and now I need it to kick in fast.  (pause for not-irate-but-not-happy-email) Ok, I emailed and vented a little bit.  This is ridiculous.

So Emily.  In my bullet journal research I came across something called spiraldex, a time management tool.  It looks like a seashell and I saw a lady using it to track chronic pain, so I'm going to have Emily start using it to track fatigue, screen time, and a few other things.  It'll be a nice visual which will hopefully help us manage symptoms and life in general.  I've already got stuff to transfer into my bullet journal when it arrives, (just a big moleskine) and it's already helping me keep track of the insanity that goes on around here, so I'm a fan.  I even found the blog of a chronically ill mom who homeschools one of her two special needs kids, I kid you not!  I have searched for blogs like this and was convinced they didn't exist.  She bullet journals of course, which help maintain her sanity.  Whee!

It seems we can never get going, never find a rhythm or routine.  We are constantly in crisis and cleanup mode.  I'M LOOKING FORWARD TO A ROOT CANAL FOR CRAP'S SAKE.  But these things help: Organization, pretty colors, venting, and not feeling completely alone.  And progress, always progress.  Man I hope Harvest Right comps me one of their new, large capacity machines for all the damn hassle this one has been.  And thank God for the brain tiara, and Sasha's 8yr old brains.  Piece of crap, she's been getting migraines since she was 4.  This year, the girls have each gotten migraines for half their lives.  I haven't even been chronic for half my life yet, not till next year.  I will color in a picture with pretty colors now.

The Shit Show plus good news for balance

I want to can this moment of peace, to preserve it in a jar and pour it on the wrath of tomorrow, or maybe even the mayhem of the night that awaits us.  We are guaranteed nothing in this wretched fog of pain and confusion.  Both girls are asleep, but at least Emily with her fatigue and mild abdominal pain has been a somewhat functional human being.  Sasha contorts her face in the pain of the cures, the ice at the base of her sore head, the taste of the pills.  She rips the Cefaly off her head because it's too tingly even on the lowest setting.  Fuck schoolwork completely, and just get used to walking on clothes and toys, they will never get picked up.

We just went to their neurologist and came back full of some hope, which really does make it worse.  I guess I'll be calling on Monday if nothing changes this weekend.  Shit, that's better than trying to navigate the hospital with a corn allergy, my God, the adhesives alone are enough to give me a panic attack!  It's one thing to pull your kid from school because they are sick, but it's quite another to consider pulling them from homeschool.  That is a thing you know, being dropped by your homeschool for being truant.  Fuck everything, I'll take a year off and play catch up when Daddy retires.  We'll take unschooling to exciting new levels, and memorize every single episode of My Little Pony: Friendship Is Magic, and preserve as much food and peace as we possibly can.  I like the sound of this.

I'll be sad to give back the goodies, the school supplies.  But I guess that's what the library is for.  And I'm not sure I'll have to give anything back as long as Emily stays in school.  God, what a nightmare.  But a nightmare is better than a deathmare.  I'm sure any parent would trade a manageable nightmare for a funeral.  I saw my neurologist this week.  She was so naive as to suggest that when the girls went off to college, I'd get better.  It took all I had not to laugh in her face.

So far this is the fewest migraine med days I've had in a September, if there is an upside to our life recently.  August had a high number of days, but I'm pretty sure that's mainly because I was so super functional.  And this is the first month I've seen an actual reduction in med days since being on my newest med.  I don't have to see my neuro for 3 whole months assuming this trend of awesome continues.  But yeah, if the girls go off to college, I'll eat my favorite hat.  The other good news is that my freeze dryer is up and running again.  The screen had to be replaced and recalibrated, so I lost a good week of freeze drying.  It was easy enough, but took energy I would like to have spent elsewhere.

So, I'm better which is excellent because Emily isn't and Sasha has really tanked.  A brand new 8yr old in constant pain for days on end will wear on more than just her.  And we have all this family stuff coming up that we're not going to make, and that's really the least of my worries.  But it still sucks, because I miss my family among other people.  But oh, we have gotten a great start to pear season.  There were no pears at the market this week, but hopefully it's just a break.  I don't see being able to drag the kids to the Friday market to check their supply, so it's probably just going to end up being what we can get on Saturdays.  Shoot.  Also our avocado vendor seems to have died or something, which sucks double because I have a freeze dryer now.  Hm.  At least the girls are still sleeping, thank Jesus.  I'd love to line up as many jars of peace under my bed as I have zucchinis, cabbage, and water, and put some extra in the pantry by the honey.  Honey and peace and pear sauce.

ps.  I'm taking donations for an ipad pro and apple pencil.  I want a place to take notes and have them all together and organized.  Food production and tally, school, doctor notes, you name it.  Plus a nice big screen for angry birds and sheet music!  Make checks out to Pipe Dreaming Inc. <3

The Beast

And just like that thoughts are gone.  Not all gone, some are just wrapped in marshmallow, and access is thick, and sticky.  Ugh, such a mess. Disastrous.  Too much effort.  I seriously hate my life right now, today, and not yesterday.  (Hopefully not tomorrow.)  These days suck obviously, and I feel like there are fewer of them thanks to the mew meds I've been on for several months.  But I'm not really having fewer migraine days.   All the days are still better tho.

Today happens to be a combination of hormone migraine plus and inherited cold migraine, a crappy combination.  One just wishes that with all the efforts taken, you'd see a reduction in migraine days for fart's sake!  Special glasses upon special glasses and hey, my eyes really DO feel better!  Still migraines.  Physical therapy out of pocket no less and what do you know, my better days are way better and I'm all kinds of functional!  Still migraines.  However, I'm not spending every evening locked in my room just to survive.  I'm actually taking meds on more days and I think it's because I am so much more functional.  I'm upsetting the beast.  More function more often equals more migraine med days.  But I'm still feeling better overall.

What this tells me is the beast is firmly planted, we just found a food it likes a little better.  It's a happier beast.  A happier beast living in you, running your life is better than an angrier beast.

Sometimes writing sucks.  But not writing sucks even more.

Both Sides

I think we are taught to pray in faith, right?  We pray with the hope that we are being listened to, that our prayers are answered be it yes or no.  But always with this two-sidedness about it.  I'm not saying that's wrong, I'm saying that's absolutely right.  But the way I have pictured it has been wrong.  Sometimes two-sidedness is still having your heart splayed open and regularly stomped upon.  No one tells you that's allowed in the two-sided faith of prayers.  That might have been helpful.  I can see why that lesson was neglected, it's not pretty and it's not exactly gonna put butts in the seats of a youth group meeting.  (but don't even get me started)

An awful lot of things are allowed in the two-sided faith of prayers that you don't hear about, like long suffering.  You do not want to know about that.  And it's not joy in long suffering, it's suffering, for a long ass time.  That is totally allowed.  So is having your head split open regularly, or rather the feeling of it.  Don't misunderstand me, there is a lot of joy in living while suffering, but there is not a lot of joy in having your head split open regularly.  You get the difference?  Huge ass suffering for decades and decades is totally allowed in two-sided, faithful, prayer.  And it doesn't mean you're doing anything wrong or not doing anything right.

With my heart splayed open, and a spike in my head, I will still pray for this world, knowing all may not go down as I desire.  Truth will guide me, joy will strengthen me, and the Lord will never cease to provide.  Thank you Jesus, that is all. Amen.

Weednyland

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.

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.