Zero

Jesus.  I guess I could call insurance to find out if we still have insurance.

Sasha has had a few better days.  I quit giving her B2 because I quit having the energy to make it during the hell month that has been February.  It's always nice when things work out like that.

If we don't have insurance anymore I'll have to take up paying it for a while, because not having it is not an option.  I have a teensy bit of savings left.

It seems like the combination of adding Depakote, working out my shoulders, and icing has aided if not the cessation of migraine, at least slowing the rate of it.  Meditation and ice alone didn't do it.  I'm not sure how long before I can successfully get off the Depakote, maybe I'll try again after another couple of stable weeks?  The continued weight gain from my previous med has only been compounded.  I would rather more hair fell out, I have plenty to spare.  But I would take bald and fat if it meant no more migraine.  Gah, I would love to be bald, fat, and awesome!  Unfortunately for now, I shall remain plumper, hairy, and just less migrainous.

Uuuuuuuh, hair.  Everything is complicated by cessation of income due to steven's gambling and debt.  He's a retired veteran, he has a job, and he's in so much debt from who knows what and gambling AND he refuses to go to rehab, that he's sleeping in his car somewhere and refuses to communicate with me.  And of course there's no money.  Jesus Christ.  He's like one step forward, 20 steps back.  Last I heard he was looking for a second job.

Emily had a pretty good day today.  She was wiped out yesterday.

The good news is I have a LOT of guitars that I don't play.  One I would never sell, maybe two or even three.  But I have a lot more than that, and they can all go.

February is short

Toast and Gatorade may make this the fifth non-consecutive day this month I don't take rescue meds.  Also ice packs and heat packs, darkness and stillness and silence.  I wonder if I should have just done hospital week again but, Sasha and Emily were in such a state.  Whatever, we're here now and I'm bent on improvement.

I think Sasha is headed for day three without pain meds, if she makes it the rest of today.  No, four days, I just checked!  God of all things...

I would love to parent again.  Emily is turning into a disgusting teenager.  Actually I'm just mad that I'm typing on a dirty gross computer with chunks of whoknowswhat on it.  It's hard to enforce anything when you're just fighting for survival.  Actually, I think we do a good job taking care of each other, and thankfully the girls are both very good at communicating.  Sometimes it's through screaming, but even that's better than nothing.

Well, Sasha feels crappy, so I'm done writing.  Management time.

Oh you know. The freakshow.

Jesus ******* Christ.
I did not kick the girls' dad out of the garage.
Sasha is not going to be hospitalized this next week.
We are not upping Emily's meds yet because thankfully she has stopped being nauseated every day and has stopped projectile vomiting every few days.

The girls' dad, after six months, finally procured dental insurance for the girls and me.  He is a retired Navy vet, and he has a full-time-plus job.  There is no reason why we should have had to pay for my last appointment out of pocket, and had to cancel the girls' last appointment.  He is a lazy bastard who I had to threaten to kick out of the garage before he would get dental insurance.

He also called a clinical Psychologist today.  Again, because I threatened to kick him out if he didn't. If that motherfucker doesn't learn how to not be a lazy bastard, I will still kick him out.

Speaking of insurance, our medical changed carriers this year.  There is apparently mass confusion and mayhem occurring.  I don't know if/when Sasha's DHE will get approved but it hasn't happened yet.  If/when it does we'll have 30 days to pull the trigger, maybe 60.  The UCSF scheduler also just changed, so confusion at both ends is not ideal.  Thankfully, Sasha has taken an upturn and cared for Emily this morning because...

Emily has a cold and I was up all night for no apparent reason.  Thanks brain!  Em had a couple good days and then started coughing today, no doubt due to our recent visit to the GPs office.  We had to follow up there since her recent nausea/vomiting game did not include pain and was therefore not obviously migraine, meaning other things had to be ruled out.  The cold is just a bonus and I pray it's not the great Flupocalypse of 2018.  If/when Emily's persistent nausea and regular vomiting return, we know which med to increase, and we will make the trek to UCSF.  So we have a plan.

And now maybe that I've written it all out, I will sleep tonight.  Gah, last night was horrible.  I didn't go to sleep until past 4AM, it was bonkers.  But as of today there is a lot more settled that was unknown yesterday.  I think this bodes well for sleep.  I even changed my pillowcases because the pestilent child laid down in my bed today, which should lend more peace of mind to my cause.  In bonus good news, I'm getting better at the Rubik's cube.  Oh beautiful, orderly, six-sided wonderful, three dimensional wonder.  *weeping at the beauty of it*  (I'm fine, really) [sitting in bed, rocking, twisting cube back and forth just to hear the sound it makes]

Oh wait!!  One of the ladies at the pharmacy asked me if I cut my hair, which was awesome because I had a had on that covers my entire head.  I mean, it probably signifies that I'm there too often, or have been over the years.  Anyway I showed here the purple mohawk that lay hidden underneath and it felt like show-and-tell, it was fun.  I'm pretty sure she just though it was super weird, but that's ok because I LOVE IT.

Happy New Year! [Vomitfest 2018]

The new year has officially been rung in!  The family throne is christened like never before.  No, seriously, I've never cleaned up this much vomit in a two hour timespan.  First Sasha threw up everything (we thought), then Emily threw up EVERYTHING, then Sasha finished throwing up what I can only assume was yesterday's breakfast. 

I've had to adjust the vomit pay scale.  It's no longer just a dollar for making all the puke land in the pot.  You know, inflation, the kids are older, etc..   So, Sasha gets two dollars for getting it all in the toilet, and backsplash doesn't count of course.  Emily gets paid for just not puking in the room at all.  Now, I have a cousin who thinks I'm just being gross, but my mom and sister can attest to the fact that our hallway is so small, and the forces so violent that puke goes up the walls and into the nooks and crannies.  But I will take that any day over every single piece of bedding, for we have a laminate wood floor.

*sigh*  The timing was interesting, I was just reading up on what admitting and discharge is going to be like for Sasha in a couple weeks at UCSF.  She's going to do DHE infusions like I did a couple years ago, in hopes that the nightmare of having her in the hospital for 5 days and braving corntamination and misery will be lesser than the current migrainous nightmare of our existence.  Sasha had gotten out of bed to puke already so were doing our typical recon from that.  Then came puke typhoon Em, flying down the hallway...

Now, Emily has had two full-body heaving pukes in the past four days.  She hasn't had abdominal pain in months, I'm not even sure how many at this point, it would take a bit of digging.  Kids who present with abdominal migraine typically grow out of those, but grow into classical migraine.  I don't know if that's what's going on with her, because she isn't experiencing head or abdominal pain, but something is going on.  I was hoping for time before classic migraine hit, if at all...more neurology...more neurology.

It should of course be noted that my brother and sister have both been here for a week from different states, packing up the things we don't need immediately as we search for bigger digs in town.  This hasn't required a lot of extra work on the kids' part, but things have been moving and shaking all around them.  Also we just had our first big storm of the season which could certainly be a factor.  Still...hell of a night.

Admittedly, we had fun watching a Netflix show the girls have gotten us sucked into, H2O Just Add Water, about these teenager girls who turn into mermaids when they get wet at all.  I do prefer the kids are in bed before 11:30, but if they sleep the rest of the night, I'll be stoked.  If I sleep the rest of the night I'll be stoked.  It's been a hell of a year for me, with with way more migraine med days than not.  Jesus.

Well, the puke laundry is fermenting, lest we anger the washing machine gods with an uneven load while everyone's asleep.  Thankfully it's a small load, and shouldn't smell too badly by morning.  I've got a lot of freeze drying and planning to do for UCSF week, and I may need to harass the neurologist about my other daughter.  School will happen or it won't, but the girls tend to get educated, I'm still not sure how.  2018 is plastered to us, hard.  Hm.  May God have mercy.

Success is melting my face off

Holidays are so hard.  Sasha used to ask me which one was my favorite until I kept answering that I hate them all, and I do.  Today was a complete success by any standard of ours, Emily had bread, Sasha had hot chocolate of all things, and we accomplished present opening as a family that included their dad.  There was no vomit, no pain meds.  And the house isn't even completely torn up at the end of it all.

My face feels like melting.  Sasha has struggled hard all day.  Thank God no family invites us anywhere or comes over, because the day is overwhelming as it is.  There was regular food prep to be done beside the extra stuff, and it's having any extra anything I think that blows it all up.  Being so stretched to capacity at all times physically, mentally, it's no wonder this is what a successful day feels like, a nap and a half in.

I think what else makes it so hard is not having a frame of reference.  In college everything is weighed and measured to the point where whether or not you even get to stay depends on how well you perform in the regimented details, migraine every day be damned.  I'm so glad I didn't know then that would be the easy stuff.  Jesus, I remember the first killer migraine I had in school, second semester in, my friends almost took me to the hospital because I was babbling somewhat deliriously in the back of their car.  I remember getting to bed to sleep it off and waking up still in a lot of pain, wandering down the hall and asking someone for pain meds since I was so unprepared. *shudders*  But the pain was all my own to manage, as well as the finances.

Clearly there are measures of success now, or the state would intervene!  And I guess now I do feel successful in many ways, pulling library books and dog toys out of my bed regularly.  It's just so hard to pull the wonder out of my head when I see pictures of people I know, doing things, getting together, smiling.  How in the hell do they do that?  I know we struggle but how do we struggle THIS much?  And how have we struggle This much for This long?  It doesn't help that seriously every medical person we ever see calls us a "tough case" and refers us elsewhere for further study.  Not that I don't love our current team, but uh, we're our medical team's edge cases. 

It's just hard to wrap my mind around sometimes.  Or maybe it's just hard being tired.  Or maybe it's just Christmas, a successful holiday.  Lots of chronically ill folks have to redo everything, are homebound, and many are way worse off than we are.  We are surrounded by some incredible friends and family.  And seriously, no vomit cleanup OR pain meds?  Incredible.  I won't lie tho, my heart breaks for lack of wellness, that we measure success by lack of vomit cleanup or administration of pain meds, which we only missed by careful management.  Merry Christmas anyway, and a Happy Fking New Year.

Christmas Letter?

The girls are outside skating, their new obsession.  It's so good for them too, because the remedy for fatigue is exercise, according to their neurologist and common sense.  Sasha must be feeling better.  After no puke for a month, she has puked twice in past two days with migraine.  But  everything is still more manageable since her Trigger Point Injection kicked in, 7 weeks after she got it.  It was either that or the miracle of camel milk, a  new food we've been able to add.

But back to fatigue, I know we'd be a lot more concerned about Emily if everything else weren't more pressing at present.  She's still so far from normal, from where she was when her migraine kicked back in two years ago.  However, she has improved a lot since then and is actively managing much better.  I mean, I did just have to clean my keyboard, trackpad, and screen just to be able to type without gagging, but she recognized that she feels better and sleeps better when she gets outside and exercises a lot so even when she's fatigued, she makes real effort to go do just that.  The rest of the time if she's not recovering in my hammock, she's probably coding or talking to her cousin online while coding, or reading of course.  She has powered through some nice math lately thanks to my friend's Fairy Garden Math Advent Calendar.  We're behind again, but we'll get through before the wise men find the baby.

The girls had their favorite adopted cousin stay for about 5 days recently, my oldest bestest friend's son.  They had a blast, and Sasha didn't crash until after he left which is very typical.  But that she made it through almost the entire week and played and ran around and even had a huge playdate with a couple other friends was outstanding.  I'm sure it's why she's had a couple more serious migraine days lately.  So worth it.  Such a change from the past year maybe, especially since September when everyone's everything hit the fan.

I usually have a difficult September, sometimes October.  This year it was September, October, and November.  I added a medicine and avoided another week in the hospital for DHE infusions for Christmas so that was a win, and since Sasha's TPI worked, she avoided the hospital infusions too.  We were both headed that way and were going to have to decide who went first?!  Very thankfully, that nightmare has been avoided.

So I guess we continue to homeschool and see what happens!  I have put in an order for an upgraded skeleton, hopefully that goes through.  We need a new Richard in our life.  I got noise canceling earphones and they are LIFE CHANGING.  I should have bought them earlier.  Since September I've become a lot more light sensitive, and being overdue for new glasses, my super light-blocking prescription migraine glasses should arrive soon.  I will look like a big freak, or a race car driving DJ.  Bring It On, Momma's got stuff to do.  Plus between those and the headphones, that's half my head holes covered from puke splash.

Address Or Die Trying

I am at an absolute loss.  No one else living in this house cares if we live in squalor, and that's not hyperbole.  I'm on day four of a migraine and even when I feel mostly good, the house is various stages of trashed, regardless of whether or not it's pear/zucchini season.  This house never has a clean season.  Now I am embarrassed if we have to open the door for anyone, including the mail carrier.  I start to panic just having to walk through the place because it doesn't matter where you look, there is stuff everywhere, on every single surface.  We're like a hoarder's starting pack.  There is time to turn back before a film crew shows up, but as I am literally the only person who hates this, I am going to have to be the one who makes drastic and uncomfortable change now.  Or lose my fucking mind trying, then they can be on hoarders without me.

To boot, we are supposed to be looking for a new house in town.  I have even started packing boxes and going through cabinets, weeding out what can be stored, trashed, or donated!  But for my efforts, I have gotten days on end of migraine and a house of squalor.  Certainly it doesn't help that the girls are still getting a lot of migraines and we are all stressed as hell about the school we're not getting done, but why am I the only grown up (of 3) in the house who knows how to discipline the girls and make them clean up after themselves?  Raising adults is hard ass work, it takes a village, and we have no village.  And what small encampment we made goes unseen under the garbage strewn about.

And steven is like a grudging and slow teenager, who has to be told to do every little detail of every little thing except walk the dogs.  Even that was a hard earned victory, that stupid, dirty, lying, careless bastard.  Still, every day I have to wake him up and give him specific jobs to do, many of which he will do slowly and crappily if at all.  For fuck's sake, I process pears faster than he does While cooking cabbage With a migraine and you can't make shit like that up.  It wouldn't be so bad if he weren't a professional cook, who worked at the goddamed Pentagon for four years.  I hope you're as not shocked as I am that the squalor rant involves a food-specific steven rant.  MY GOD this song is repetitive! 

So, part of the uncomfortable change was to put all the girls' toys into storage and only let them have homeschool stuff.  But being that I am truly alone I think we are going to have to quit homeschool too, our charter home school anyway.  I can't do food management and house management and migraines and insurance and meetings and caretaking by myself.  Forget packing.  And it's heartbreaking for so many reasons.  But you can only work with what you're given.  I can't make anyone else care about cleaning up.  I can't make steven care about doing a good job helping around here.  And I certainly can't make us stop getting migraines and having food allergies, though I spend a great deal of time trying.

We will be reduced to managing misery, and learning how to keep a house while miserable.  I'm fine with that.  Discipled misery is far better than undisciplined misery.  And for the girls, it is likely a lesson more important than history right now.  We're in a crisis, and it's probably past time to be in crisis mode.

You know all I wanted for my birthday was a clean house.  Family kept asking and I kept answering.  I didn't demand a spotless house for all eternity, I just wanted a clean house that day.  Two guesses if that happened but you'll only need one.  It was just a symptom of some greater problems, that it's time we addressed.  Address or die trying.