Thursday, December 1, 2016

Steven and christians

People keep asking about Steven, so I guess I should update.  Yup, I am continually impressed by the amount of effort he puts into our relationship.  It's not all peaches and ukuleles, but he does well when he cares to.  He just never cared to before.  He cares very much now.  A wise woman once told me that men don't start maturing until they're 25.  I think Steven started maturing like, closer to age 40.  But some people never mature so it evens out.  I think that means he'll have a mid-life crisis when he's in his 80s?  Anyway, we're still technically married and it doesn't feel like a technicality anymore.  That's convenient.

Sasha has been doing better for the past couple months.  There is usually some level of pain or nausea going on, but it has been much more manageable.  We haven't experienced days and nights and weeks of epic misery on end like we were before.  I am so grateful for that.  Her life is still such a muddled pool of oddity tho.  If she weren't such a weird kid to begin with, she might be a little easier to untangle, but I'm sure it's all connected somehow.  So while most days are still a struggle of some sort, one day here and there isn't.  And while I am so, so grateful to be better off, I desperately wish to be even more better off than we are now.  Like, can we have maybe 2 or 3 good days in a row?  Blagh, I've gotta keep my head down, keep it in the game.

Emily is fatigued as always.  We may have gotten her a teensy bit more stable by removing soymilk beverages.  She had been sad for a few days so we ran to the aquarium on a whim.  It made us all very happy.  Very migrainey, but very happy.  I can't imagine what it's like to withdrawal from school due to illness and fatigue.  I wasn't sideswiped until college, I had a childhood and everything!  So while we do commiserate on many levels, we still have to deal with each other's unique experiences, which is difficult for me as I am constantly trying to educate the monsters.  At least it's not hot outside anymore.  And zucchini season is over, and pear season for that matter.  Just waiting on Avocados.  Avocados and energy.

Anger helps keep me motivated.  I'm angry at christians, they are the worst.  I have been thinking about this particular issue for a few years now on the backburner, and I have come to the conclusion that as an American and as a christian, there is no justification for not serving homosexuals if you claim to be a christian business owner.  Like the infamous bakery example.  You're not promoting gay marriage if you bake a cake for a gay wedding, unless you put an ad in the paper for free wedding cakes to gay couples.  If you refuse to bake a cake for a gay wedding, you're not stopping the wedding, you're discriminating.  And as a christian it's not up to you stop what you see as immoral activities anyway, that's not how evangelism works.  Pull the damn log out of your own damn eye for God's sake, and feed people!  Feed everyone!!  Did you know feeding your enemies is an effing biblical mandate?!

By the way, can you imagine what would happen if you started a relationship with people whose lifestyles you don't agree with but you made them food anyway?  Religious freedom and free speech means you can hang a sign in your holy bakery that says you think homosexuality is a sin, but you will gladly bake cakes for homosexual weddings anyway because you want to love people with the love of christ and flour and butter.  Maybe your holy bakery will bake cakes for all the homosexual weddings and you will suddenly have all these gay friends and how friggin rad would that be!  But no, christians are such assholes, they would rather close up shop than actually love their neighbors and heaven forbid talk to them and share the good news.  I can't even.  Let's be christians and elect trump.  It's those same idiots.

So before I even get out of bed in the mornings, I call the government.  I have several Washington DC numbers saved on my phone and I just call until I get through to voice my concern about the idiocy of this upcoming administration.  Thanks christians, didn't have enough to do.  *deep breath*  One day at a time.  Thank Jesus we're back to one day at a time and not one hour at a time.

Wednesday, November 9, 2016

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.

Wednesday, September 28, 2016

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.

Saturday, September 10, 2016

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

Friday, August 5, 2016

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.

Saturday, July 30, 2016

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.

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.

Tuesday, April 19, 2016

All The News

It's not a perfect system, and although I didn't expect my house to become instantly organized or anything, it would have been nice.  But it's kind of better than I expected, which certainly counts as a bonus.  I withdrew Emily from our beloved Elementary school last week, after a meeting that was originally intended to set up a 504 plan.  But than kind of plan supposes your child will actually be IN school, whereas Emily hasn't been to a complete week of school since before Christmas break, and hasn't been to any school at all in I'm not sure how many weeks.  My newest mantra is, "This isn't the reality we wanted, but it is the reality we've been handed, so we're going to rock it."  And rock it we have.

It's too late in the year to officially enroll Em in the same homeschool as Sasha, but I did have budget left so I managed to order some stuff for her for the end of the year and the summer, since Sasha will have to do some school over summer.  These kids have three awake modes: Play, Learn, and Feel Crappy.   You can combine the fist two, but the last one trumps all.  Since they spend so much time in FC mode, we have to sneak Learning in whenever possible, summer be damned.  And if I can get a jump on second and fifth grade, so be it.  The plan is to homeschool Em next year as well, barring a miracle of course.  The problem with neurologist appointments and trying new levels of new medications is that you have to wait forever to see if they're going to work.  And lately, they don't.  And suddenly six months have passed and you're not any better.  In fact, you're worse.  Shoot.

Which brings up one of the main problems with our lifestyle.  Aside from dealing with daily pain and illness, how in the world are we supposed to find enough routine to function?  I've been wrestling with that one for months now and am just barely starting to figure it out, thanks to Emily officially homeschooling, and my own head being just slightly better enough to think.  It means having all your alternate plans ready at any given moment.  It's having primary, secondary, tertiary goals, and being completely fine with dumping them all to take care of disaster/s, and then jumping back in to some combination of those goals again if by chance one, both, or all three of you start feeling decent, good, or amazing.  Many times a day, every day, without breaks or vacations.  And it's not nearly as easy as it sounds.

All your alternate plans for all your goal levels take energy and effort of course.  And switching between them also takes energy, as does explaining what happened and why to your kids who are in various states of fits and exhaustion.  This lifestyle leaves little time for anything else but breathing and coping.  We don't see friends or leave the house much and we have to be ok with that right now.  It's not the reality we wanted, but it is the reality we've been handed, so we're going to rock it.

Now that we've embracing homeschool for both kids, we're having more nice moments.  I don't have to call Em's school every damn day and have the same sad conversation, or worry about picking up work.  And now that I'm officially her teacher, she has to do what I tell her mathematically, mua ha ha...I can't complain tho, because she's into math, reading, and science so I'm not sure what more I could ask for in a student.  It's still a struggle due to fatigue, but I'm sufficiently used to struggle.  I mean, we're still figuring a lot out, and I didn't get to all the things I wanted to today, but I have learned you can't stress about it.  I'm not always going to have a migraine and neither is she, and on the better days we'll do more.  Plus I'm learning how to sneak things in, how to make it easy to shove knowledge into their heads and what works for us.

I guess to be completely honest, I have felt a lot more supported lately.  A big stressor has elsewhere been lifted.  The girls' dad got his head out of his anal region several months ago.  He sacked up, parted ways with his heinous she-bag of a baby-momma, got a second job and is almost out of debt, and is even in counseling voluntarily for the first time in his life.  He is hellbent on getting his family back and I am not inclined to stop his pursuit.  Our friendship has always been intact, and he is addressing every other concern I always had.  And I am raking him over the coals about our wretched piece of crap marriage, make no mistake.  But certainly there is room for redemption, and he is showing shocking signs of growth and maturity.  Shocking.  So, this would be new, because everything we had before was garbage.  But best of all, he is investing in the girls' lives, and being extremely helpful when he comes to visit.  (Like I said, shocking.)  I am stuck between too tired to be terribly excited and "For f***'s sake, FINALLY!!!!!"  We have a big fancy date coming up, pictures to follow.

So...yeah.  Sasha continues to have near-constant face rash, but it's lesser as long as I don't give her compounded corn-free Naproxen which is hell on steroids in a bottle for whatever reason.  And we don't have a follow-up until the end of next month so we're kind of just hanging with everybody's garbage stomachs and rashes and pains and occasional huge accidents and bouts of vomit.  But we did just explore the molecular structures of both caffeine and ibuprofen, so that was fun.  And the girls' dad is participating in their lives and in my life, pretty much like never before.  He will accompany us to our next UCSF appointment.  Oh, he also introduced mom and I to our new favorite beverage, hard root beer.  His reputation around here is improving.

Friday, March 4, 2016

This Is Emily's Mom

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.

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.