Monday, December 25, 2017

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.

Saturday, December 23, 2017

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.


Saturday, September 9, 2017

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.

Wednesday, August 30, 2017

The Larvae Are Meditating

My plot to addict everyone to Hamilton has been a success.  There girls resisted me at first, as they are wont to do.  Happily, Lin-Manuel overcame them with his genius, first Emily with the opening song, then Sasha with the Schulyer Sisters.  My mom likes good music and didn't take any convincing at all, obviously.  She just needed an introduction.  Steven clearly doesn't count as a person so his opinion is irrelevant.

Steven is learning the ways of the force, ever...so...sloooooooooowly.  At least it's progress I guess.  We are processing zucchinis and pears lately.  We got a jump on pear season so we're not having to tackle 12 boxes at once like last year.  Being able to process just a couple boxes at a time means I'm able to use the freeze dryer for more pear sauce and sorbet which Sasha is thrilled about.  It's always good to have more food.

School.  I thought school would be at least a little easier this year since the girls are doing a little better, but so far less panic doesn't translate to easier schoolwork.  There was one history lesson Emily didn't fight me too much on, but that is the only improvement I've noticed so far.  Less panic over managing migraine is helpful overall, and help with food is certainly helpful, but I don't know what it's going to take beside real, huge, amazing migraine improvement to translate to real, actual, school improvement.  Exhaustion still reigns in our lives.  Gah.

Speaking of exhaustion, RANT WARNING: There are those who say, "Just ask me and I'll come over and help you" but then when we do ask, we have to literally be worked around their golf schedules.  I call bullshit.  We're over here fighting for our lives, being as proactive as possible, homeschooling, making our SCRATCH from scratch, meditating, going to therapy, icing, massaging, driving to the neurologist, the GP, the chiropractor, the eye doctor, keeping meticulous records, keeping our blood work in order, manufuckingfacturing pills...and competing for a golf schedule is just a mockery I don't need or want.  I think golf can be worked around us, or we just don't need to put in the effort for that kind of "help".

Effort is kind of the whole problem here.  Friends, if you know someone who is chronically ill who needs help, you have to volunteer specifics.  "Can I come over on Tuesday and fold your laundry?" is a great way to start a sentence.  "Are there things falling apart in your house I can come fix on Saturday?" is another great thing to say.  Illness doesn't care about vacations or schedules or "church", all it wants is to suck the life out of your bones at 3 in the morning.  Loudly and painfully and repeatedly.  END RANT.

Night shift approaches.  The larvae are meditating and it's past their bedtime.  I hope to God we all get sleep tonight.  I hope to God that Sasha doesn't lose pears.  The very thought makes me physically ill.  On the bright side, Cognitive Behavioral Therapy is going very well.  Peace out.

Friday, August 18, 2017

zucchini ass

Fuuuck migraine.  Mourning is valid, anger is valid.  Frustration can be motivating.  Being smashed against a wall over and over forces you to be creative, or turned to pulp.  Okay.  *meditative breath*  I am not a crap teacher, Emily has a neurological disease for which she was withdrawn from school.  Her state test math score reflects that.  Ugh, every waking day that I have tried to teach her math reflects that since migraine reentered her life.  Her English Language Arts/Literacy score reflects it less because she still reads obsessively,  even though she doesn't read what I assign her.  Math is the hardest thing for her to grasp through brain fog, even though it was never a problem before, neither in english or spanish.  It is a casualty of war, and that pisses me off so badly.

I don't know how this works either.  Is migraine such a disease that you can form new neural pathways around it?  Or do you just have to be extremely strong willed and self motivated to power through it?  Or does being extremely strong willed and self motivated allow you form new neural pathways?!  Clearly it's not always possible.  But when you're chronic and not always fighting all the symptoms, you just have to find ways to function sometimes.  I have been trying to teach Emily this.  The kid wants to return to classroom school in the foreseeable future so I told her that we'd take this year to catch up and see where she was.  We are five days in and far too familiar with the fight.

I'm going to have to do some restructuring around here.  First I need to go to bed, I'm starting to hallucinate.  I kicked a lot of food's asses today, way overdid it.  Bet you didn't know cabbage and zucchini had asses.  They do, and they got thoroughly kicked.  Boom.


Wednesday, August 9, 2017

Almost 38

It's almost pear season.

We seem to have plenty of pears left, thankfully.  However, that's because Sasha stopped eating pears for quite a while.  It turns out, the red pears make her feel crappy.  So ever the colored foods get her.  We still have green and brown pears tho.  Most of the pear sauce seems ok, and we had mostly green pears anyway.  So we know for this year.  *sigh*  Fuck you food sensitivities.

We're going to retrial cheese soon, so there's that.

Steven being here has certainly lightened the load.  He does dishes, laundry, food prep, and light parenting.  It is taking a lot of effort to teach him all the ins and outs of running this place, but he is learning.  I imagine in a year or so he'll have it down.  He got a decent job so when his debt is paid off he shouldn't have any trouble paying me back, bastard.  I only had to stop him from bringing nutty granola into the house once, so all told, not bad.  The work he provides costs me in stress and energy, but it's still probably an overall net gain, especially because my mom doesn't have to cover for me ALL the time anymore.  And as time passes he'll get with the program more and more, or I'll break his legs.

The girls and I are trying to recover from some excellent family time we just had.  Man, we went all over the place and hung out so much, no wonder we are tore up!  The girls even saw all the cousins at the reunion.  I had a migraine the whole time so I mainly slept, thank you hormone week.  I am back to aggressively icing and budgeting energy.  We had our second session with a lady who does Cognitive Behavioral Therapy for kids, but that so far has just been business and not pain reduction.  Sasha has had a migraine both times we've been there so far.  Hopefully as we get into our school routine that will cease.

Blagh, school, the third (fourth?) bane of my existence.  It should be better this year, right?  Steven is here helping out, the girls are both feeling better, why am I not excited?  I am still having a lot of migraine, tho not as much as the horror that June was.  And July was a lot due to fun over kill.  August hasn't started out well but so far it has been July hangover.  I am bummed about the reality of Steven being a near worthless shithead who must be managed, along with the prospect of not even dying alone but dying with a near worthless shithead to manage.  Did I need another cross?  Does it matter?  How I feel definitely matters...so anyway there's that.  I have a thorn in my head and in my side and two more thorns asleep in their bunkbeds.

I do have Hamilton, and I do live in California, and those two things are to be celebrated daily.  Hallelujah.

Friday, July 21, 2017

My Game July 2017

My children know neither the voices nor even all the names of our family members, similarly they know neither the voicer nor even all the names of the instruments I play.  Family and music have always defined me.  But being head over tail in the care of my girls in all our illness and disease has made it clear that people prioritize things differently.  I gave up music for the literal survival of my children, and my family gave us up because...we became too big a burden?

I have one cousin who has come to our aid when we call for help, so I see her more frequently. One of the many who live in town.  I understand that people's lives need not revolve around ours.  But I have friends who treat us better, who text just to see how we're doing.  Who are planning their gardens around feeding Sasha.  And it probably wouldn't be so bad if family didn't give us lip service.  Please don't say you're going to visit or get together or help out if you're not going to visit  or get together or help out, it is that simple!

Everyone in my family takes vacations.  Everyone in my family SHOULD take vacations.  But for the love of God, it sucks as a chronically ill caretaker of disabled children who will never take a vacation, to be told that family will come visit, only to have almost no one in 6 years come visit while watching everyone on their regular vacations.  JUST FUCKING SAYING.  While I'm trying to keep Sasha from throwing up the throw up meds in the middle of the night while simultaneously worrying how I'm going to pay for my next neurologist visit because US "health care" is out of control, THIS IS WHY I have no fucks left that I piss of the Republicans in the family.  They are coming up with ways to destroy America, unprecedented ways.  I have nothing left to lose.

Awkward family reunion?  Oh you mean I might get to attend this year because we have slightly more manageable migraines no thanks to anyone we're going to go see?  All I have left in life beside managing pain and puke by the hour is fighting for social justice that might one day benefit us and our fellow nonwhite males, through the intertubes and by calling the government.  So I call the white house, congress, and committees, I sign petitions, leave comments, and I have discussions with people and call people out.

And I am so far from being alone.  I have many friends who are having a worse time than me with their families over this administration.  We are in a major turning point in history, and it Sucks.  It is terrible and unfortunate and some Republicans have been hoping for this for a long time.  They are an evil that must be stopped.  At all cost.  They are more dangerous and insidious than I think even most mild mannered American realize.

Feeling normal is a luxury I don't have.  Having grown up conversations regularly is you guessed it, a luxury I don't have.  And unfortunately I am already so broken and unsupported that I will fight poorly.  I regret nothing.  Now, I have to take migraine meds and get to work.

Tuesday, June 13, 2017

Good Dreams

I had the best dream today.  Crawling out of this migraine hole has caused me to reinstate nap time, so I crashed near noon thirty as per protocol.  My head had been perpetually burning for over a week, but thankfully let up today.  However, migraine hangover means I'm still fatigued, so I got a bit of an early start. I don't know how quickly my dream came, but lemme tell you about my favorite part.

I was in a house that had been recently constructed.  It was still being finished actually, but was habitable.  It had high angular ceilings, and two living areas. (Hopefully that means two bathrooms!) It actually reminded me in shape of this house right when we moved in, before my dad put the wall in that completed my old tiny bedroom, except everything was bigger.  There was limited furniture, wood floors, and nothing on the walls so the acoustics were nice and bouncy.  I sang some arpeggios and the overtones were just absolutely killer.  An old friend of mine was there and my piano was in one of the living areas, so she and I just started singing and harmonizing and giggling over ourselves.  I didn't go to college with this friend, but we started singing college choir warmups because dreams are funny like that.

The newness and beauty of the house, the friendship, and of course the music made it the best dream I've had in recent memory, and I mean in the past few years.  I mainly have nothing dreams or anxiety dreams.  It's funny that as I'm planning a totally non-routine UCSF trip during dinner and traffic[read:nightmare], ordering a portable wardrobe so the new crap roommate has a place to keep his accoutrement lest he sully the office with his daily detritus, and still managing everyone's symptoms, my brain spits out a dream that is my actual dream.

I didn't lack energy, and of course no one was out of tune.  Hehe, clearly not reality.  But I will mentally revel in it none the less.  I didn't know how badly I missed and needed happy thoughts.  God, it was awesome.

Friday, June 9, 2017

Mainly Brain Paste

I am appropriately sad.  I feel it was unnecessary to ruin the joy this countdown to retirement was supposed to bring.  I am not sad that Steven is a virtually useless douchebag, that is not wholly unexpected.  I got over that sadness long ago.  I am sad that summer sucks now, that the foreseeable future sucks.  I am sad about the impending school year and the impact this shitshow is going to have on it.

More than anything I am upset at the loss of the everydayness, the every day looking forward to not a liar coming home, to not having to be in charge of every damn little thing.  I was looking forward to sharing the load of life.  I am still grateful that things will be easier for my mom as far as food processing goes.  And the girls will...get to see their dad at least attempting to make amends for his shit life decisions.  But, if I were to hire a random stranger to come help out with the house, I'd have an interview process and hire someone who was more trustworthy than Steven, who could make better self-directed decisions.  And bonus, Steven's a shitty roommate!  When you're married at least there's tradeoff, commitment, fun.  I know it could be so much worse, at least I'm getting my money back and man labor Lord willing, but I'm also getting a shitty roommate who has to be managed, on top of sick kids, sick self, older dog, and diabetic dog.  We ABSOLUTELY would not have gotten diabetic dog if I had known what was going on.

Son of a bitch, he was supposed to be out of debt, we were actually going to be saving money, and I was hoping to be able to make it back to the physical therapist which is something that measurably helps migraines but is expensive.  And not that it really matters, but I wanted an iPad.  It will open up options for the girls' schooling and hopefully for symptom tracking and charting.  But mainly I think it will be fun and we desperately need more fun that doesn't require tons of energy.  Goddamnit.

I must breathe it all away. There is no tomorrow, no yesterday, only now.  And right now the meds are kicking in on the head that's been burning for 5 straight days.  Hallelujah.  The babies and I ran a couple of errands today, picked up meds, ran to the library.  The library is magic.  The girls have already finished some of the books we got today.  It was challenging getting there between all our symptoms, but we walked calmly over our challenges and had a nice time.  The babies and I pray together a lot, and that is magic too.  Sasha did end up puking and taking pain meds for the first time in almost a month, but those are still incredibly impressive numbers I hope we can continue to build on.  Or rather unbuild on.  Er, off.  I want her to keep feeling better and taking hardly any meds!

Speaking of magic, I've never made a serious dream boy list.  I think it is high time.
I want someone who enjoys reading scholarly journals and nerd mags, thinking critically, and is probably a math and science nerd at least in his spare time.  Naturally he will also be able to appreciate good zombie lit and sci fi movies, TV shows, etc.  He will have to have a heavy dose of silly, and also be extremely sexy (like me duh).  He doesn't have to be a musician, but it would probably be helpful.  I am much more interested in him being well read, self motivated[I cannot over emphasize this one], and painfully attractive.  He's got to have a real big give-a-shit box[I CANNOT OVER EMPHASIZE THIS ONE EITHER].  And oh my gosh, self awareness is a must.  So basically, imaginary.  Clearly my imaginary awesome dream boy will not be selfish, jealous, lazy, or an asshole.  He will obviously manage money well and wisely.

Boy, that's a fun list.  I bet I can add to it if I keep thinking.  Maybe my imaginary boyfriend can help me write the book of our allergies and migraines and general drama, it'll sell in over 50 languages, and then I can hire some real help!  But first I have to get through this wretched countdown, and live through this stupid summer and figure out how to function with a shitty new normal.  Change and let the fuck go.  Change and let the fuck go.  Change and let the fuck go.  I lack nothing.  UCSF trip number 1 in 19 days.




Monday, June 5, 2017

That Escalated Quickly

Well.  I feel like I've said this before, but it's hard to know where to start.  I've spent the weekend changing and letting go.  I really REALLY wish I could get my tattoos.  Let us not forget the other, I Lack Nothing.  So let's start with the good.

1. Sasha still feels good and hasn't had prescription pain or puke meds in almost 3 weeks or something.  That is hella rad.  [that phrase is going to age well]

2.  I haven't taken migraine meds every single day this month so that's at least a start.  I am adding naps back into my regimen and while I don't consider that good news AT ALL, it is good to have a plan to more forward with.

3.  People have been crawling out of the woodwork to support me and it is fabulous.

4.  We are still getting man labor.  Probably hopefully, I don't see why that will change.

The Bullshit.

As you may have inferred dear reader, I am single again.  Steven has a priorities problem, a lying problem, and a new and exciting gambling problem.  He is in counseling now (so he says) and is still moving here when terminal leave starts in two goddamn weeks.  He is sleeping either on the sofa or with the dog in the office because every other option costs money and he ain't got none because he has even more debt than he told me about because of course he does.  Forget paying for his baby momma's car, that is pretty low on my give-a-shit list now since I had to start paying for his debt on my credit card, as he is an emotionally fragile man-baby.  I now have to micro manage a destructive adult with the tendency to shut down.  I am most concerned about setbacks.  My plans are to get him here under my thumb, and keep him too busy working to get in trouble.  Lord knows there is plenty here to do.  I'm going to start by:

1. Unsmarting his phone so it only makes calls and sends texts.

2. Putting passwords on the computers that the kids know and he doesn't.

3.  Taking away all his cards away and giving him an allowance.

That should do until I get my savings back plus all the recent money he owes me?  I have no idea what snapped in his brain or when, but I had reservations the whole time we were back together about being married to a lesser quality person.  I just figured that no one is perfect and at least the girls would have a dad present.  Plus we have always been friends and I did appreciate his friendship.  But damn, this is of course grossly and exponentially unacceptable.

I don't guess it matters I'll be micro managing my ex who lives with me as far as it pertains to any future relationship.  I feel like that is a negative concern, it matters so little right now.  I just want the kids to feel better, and Steven to not ruin my financial future.  All right, I have a nap to take.





Monday, May 29, 2017

WARNING: HOT STICKY RAGE

We survived another school year, accidentally stopped giving Sasha half her meds every day, she is feeling 2 orders of magnitude better because of it, Steven is coming home in about a month, and he can burn in Hell for all I care.  Oh, and I've been trending up in migraine days since the beginning of 2017.

When Steven and I were separated he decided to whore it up, spend my life savings, get into debt, and make a love child.  He currently pays generous child support which I am of course completely in support of.  However, I recently had to loan Steven one thousand dollars from the meager savings I've managed to scrape together since we've been separated, because he accidentally made double car payments on both his cars this month.  It could have been an honest mistake, except that he was intentionally hiding the fact he had purchased a car for his baby momma and was still paying for it, (in addition to the generous child support).  So to be clear, he literally spent my life savings, ran up tens of thousands of dollars in debt whoring around, and is still spending my savings on his baby momma's car.

And only when he got caught hiding the fact that he's still spending my money on a secret car for his baby momma did he 'fess up to gambling away three thousand dollars in February of this year.

Needless to say I was upset.  But you know what?  I did manage to process this on an adult level [after some HEAVY swearing and several days of radio silence] and acknowledge all the work he has put into our relationship and being a parent.  I told him that I would no doubt continue to have trust issues but that we would continue to work through it.  I realize that he is human and still makes mistakes and when it comes down to it, we need him here.  The kids need him, I need him, shoot even the dogs need him.  So we're a family and he's an asshole but I still love him.

A few days after I acknowledged all this to him and we were on good speaking terms again, I asked him what he was planning on doing about the car situation.  I wanted to know and my mom was asking me.  He had no idea, so I let it go a couple more days.  Then I asked when he was flying out to get his car so he could sell it.

[If you have delicate sensibilities, just stop reading]

Then that degenerate motherfucking insane piece of stale shitstain told me I was mean.  He said that was mean, but probably the logical thing to do.  Dear reader, need I tell I lost my mind?  What little mind I have left after raising his two chronically ill kids that had to be removed from him because he constantly endangered them due to carelessness with their life-threatening food allergies, I lost.

I apologize for assaulting you with this story, but I have been pondering and praying, stewing and meditating and I got nothing, except that writing it out makes me more and more nervous about letting Steven exist in our lives.  Days later and he still has no plan to get his second "secret" car.  We reconciled over a year ago, long before he ever decided to gamble.  (If he's telling the truth)  We knew there was a family reunion coming up, were thinking about doing a rededication ceremony there.  How beautiful would that have been?  Lololololfuck. That. Shit.  He is the deceiver he has always been, I am the least of his priorities that I have always been, and I am out of options.

How screwed are we?!?!!  At least the kids are old enough now to not let him poison them I FUCKING HOPE OH MY GOD.  And seriously, trending up in migraine days this entire year, I could do without.  Probably the Sasha miracle is to keep me from honest to God burning the house down.  Thank you Jesus.

Wednesday, March 1, 2017

Charts!

On a scale of one to five, one being clear spit and five being redecorating, most of Sasha's puke is in the two and a half to three range.  It took me a while to figure out a workable scale, toying first with one to ten, and then one to seven.  It needed a middle number for starters so ten was out, and a seven scale is too difficult to hold in my head.  And even tho a five scale with halves could sort of be simplified by using a ten scale, the former seems to capture the nuance of vomit better.  So there's a sentence I never imagined writing.

I'm confident we're becoming better neurological patients.  This probably has to do with homeschooling honestly, that and just time spent in a neurologist's office, and knowing what kind of info is useful to them.  But teaching two different minds, two different level of math, plus tracking all the food and food systems in the house has made me better at thinking of things in terms of data.  And tracking data in pretty colors helps me untangle things, and feel at least like an informed onlooker if not more in control.  Like how understanding baseball makes it infinitely more interesting.

I do wish I could track more of the girls' symptoms more meticulously, but I haven't the energy.  Today absolutely kicked my butt and we did some school, I got some pills made, and made some food.  If I can swing it, I need to make more pills and do more food.  Oh, but I want to make charts.  Maybe I'll just make one chart to track Sasha's puke number and tape it up in the bathroom, where it will be easily accessible.  Hm, I'll have to hide it under a drawing or something...Oooh, a volcano picture?

Thursday, February 23, 2017

Moving In

Clearly I was wrong about not writing anymore.  I still need somewhere to dump about the peanut butter anxiety dreams I'm still having.  And even our new normal of pain, anger, and tears needs crunching through and processing.  I have acknowledged that this is where we are, we have moved in, but we're still painting and unpacking I guess.  Moving always sucks, even if you're good at it.  Below is my brain dump from Tuesday.

"Today Sasha cleaned her room until she started throwing up a little.  It really was only a little compared to yesterday.  Or was it the day before?  It's probably in the migraine journal or the bullet journal but really, Sasha puking is normal.  She wanted to keep cleaning but I made her stop because puke means her head is not cooperating as much as it can.

Emily is having trouble yesterday and today thinking clearly and remembering things, like why she came into a room or what I just asked her to do exactly one second ago.  But I made her do part of a practice test anyway bc testing is in April and I want to make sure she is doing all the grade appropriate work and we're not missing anything.  She's always been fine with testing, it has never been an issue.  But she does cry and wail when she has to do any work of any kind with a migraine, which is unfortunately most of the time.  So I literally held her in my lap while she cried for maybe an hour and did practice test questions until Sasha needed attending to.  Then Emily cried when she didn't know what to eat for lunch and I made her eat something, because not eating can trigger more migraine.  God, it was awful, the noise.  I mean, and the fact she was suffering, obv.

Friends came over for about an hour and a half this afternoon.  I considered calling it off bc Sasha's head was already hurting, but she begged me not to.  It was a lovely visit we all enjoyed very much, but by the end Sasha was definitely feeling it.  Then her pain kept increasing until she took all available meds, a rare second 1/2 cup of coffee, used heat and ice packs, essential oils, had a massage, and watched cartoons and a movie until 9:30pm when she was comfortable enough to sleep, thankfully.  She said her pain was only a three, but she was crying, it hurt so badly.  She was still able to talk through it although not easily, so I'm saying this was a solid 6.  She wasn't holding her head, pacing, and mumbling incoherently so it's definitely been worse.

And honestly except for the friends over and the second cup of coffee, this was a pretty normal day.  Vomit, tears, and symptom management.  And science, bc we learned why bumblebees squirt water out of their heinies."

Today has not been quite as dramatic.  Sasha was in pain this morning, accompanied by one of her main emotional symptoms, anger.  We smelled oils, she did Cefaly, we watched My Little Pony, the usual.  We all decorated our new art journals.  Then the girls wanted to play in their room.  I called them out to watch a 20 minute art video from our new curriculum.  I said we would just watch the video to see what it was about, not actually attempt anything yet.  Em had a complete meltdown and wailed through 15 minutes of it since her other option was writing sentences.

Now, we had talked this morning about coping mechanisms and how we were going to handle the next crying fit, but hadn't really come up with anything.  Sasha is at the point where she can tell me she's angry, she can draw a picture of it, and we can smell oils and get through it.  Em is still at a loss.  Maybe half an hour after she had calmed down she was able to write a sentence in her journal about what happened, so that is our progress for the day so far.  I am comforted in that all these goings on are normal for migraine.  We fly huge migraine flags and wear the migraine outfits and everything.  Someday it would be nice to just have an awareness bracelet or something.

Monday, February 13, 2017

Forwardheaval

Holy string of expletives Bat Man, what a shit parade.  I haven't had crippling pain in quite a while, usually it's crippling fatigue and brain fog and stress.  Oh, it just occurred to me that this doozy from hell was likely a let-down migraine, in combination with hormones and a dentist appointment.  We (the neurologist) fiddled with Sasha's meds a few weeks ago since she was doing so well, to try to squeeze a bit more benefit out of them.  She was on a fairly low dosage for her weight so I okayed the move.  Two weeks later all hell broke loose.  We lost the end of December, all of January and part of February to constant pain and nausea and minute by minute battling symptoms.  Fucking absolute nightmare.  I called the Neuro and detailed symptoms and general shit show along with dates and he agreed that the med adjustment might be behind it.  Now that Sasha's been back down to her original dose for a while, she is vastly improved.  She just had two and a half moderately good days in a row and I bet being free from constantly thinking of what intervention to try next was just too much for the migraine brain, so it exploded.  Well, it's progress anyway.

In other news, I feel like I've been preparing to be in this position politically all my life. I started talking back to my uncles with I was 3, so no fear of standing up for myself against family even then.  This has been helpful now with a trump supporting uncle and worse, standing up to the deep sexism that runs on that side. *shudders*  In high school I took the most advanced English, Math, and Science classes they offered even though music has been my life's passion and payment.  I assume these classes have helped not only with my ability to do basic research but also interpret data.  I mean, I'm no scientist but I can sure as hell spot fake news.  Sadly, a lot of those skills just go to toward fact checking friends on Facebook.  READ, PEOPLE!  And even the nearly obliterating disappointment of the first 14 or so years of my marriage was a pretty good preparation for what I can only describe as the gaping loss of so many friends whose hearts have become so clear in the past year and a half.

I'll never forget that first post from an old friend who was excited his new home state would not be accepting Syrian refugees.  That really was a turning point, when faith turned to fear, or rather, I became aware of the extent that fear ran people's lives, and how much they were willing to be led by lies.  It used to seem weird to me that christians were such a driving force of hate.  Then they elected trump. *smdh*

And then the Southerners.  I don't regret the time I spent in the South by any means.  I feel like it has helped me personalize this battle for America.  Just like any terrorist who only sees the world one way is still a human with a heart and feelings, deserving of consideration and empathy, so too are all the crazy folks who hate women, brown people, black people, gay people, sick/disabled people, or science.  And just because they are worthy of consideration and empathy doesn't mean they shouldn't be absolutely opposed and stopped and protested and refuted by any and all possible means.  I think it was important for me to learn first hand that otherwise awesome, loving, and giving people can be completely accepting of such heinousness.  Thankfully not all Southerners.  Present company excluded, I'm like, so totally sure.

I remember my dad telling me about the time he realized one of his best friends was racist.  My dad asked his friend if he thought being white made him better than my dad.
My dad: "Do you think you're better than me?"
His friend: "Psh, of course I am!"
Totally serious, no big deal.  Except of course it was then in the late 50s-early 60s, and it is now.  My dad got treated differently by the police for being brown and thank God for the Black Lives Matter movement, because the problem has not gone away!  My dad was a friggin boy scout who's parents had to sign a waiver so he could join the Marines when he was only 17, and he has only ever taught me to respect police officers.  He was a Teacher and a Pastor but he would not keep silent about the harassment.  I don't know but I think loving your country is like loving your kids.  It means when you see flaws, you address them before they become an international problem.  You do not turn a blind eye to their wrongdoing, that is not love.  Many people have given their lives for this country, and it is incredibly shameful to piss on the statue of liberty in salute to their sacrifice and all it stands for.

Due to my glorious upbringing on the West Coast, I have only recently begun seeing how skin color and gender are such absolutely binding principles.  I was on the youth worship team as soon as I could play the guitar, and I was that kid who was always used as an example.  "We don't all have Charli's musical ability..." was a line I got tired of hearing.  And yet, any time someone wanted to come and help out with the music, I got tossed aside.  Man, having been a youth worship leader, that is inexcusable!  That is not how you treat a kid musician just starting out leading.  I was their last resort.  Instead of being mentored and taught, I was called in when necessary and tossed when not, and not bothered with warning when things got canceled.  Oh the things I learned not to do from that place.  Later on we get this drummer, a white kid, a guy who plays super loudly.  Again, having led music for years, inexcusable.  And they would just let the white guy do what he wanted, because they were white guys too, and that is exactly how it works.

These are not battles I thought I'd have to fight, that my kids would have to fight.  I mean, we are just finally getting used to being a special needs homeschool family!  Oh God, I want a vacation.  But even as a kid, our family vacations were spending two days each way in a car to visit my Grandparents, to help them take care of their house.  Now that every cell in everyone's body is no longer screaming, we can get back to our regular insane workload instead of our insane, insane work load, plus calling the government to tell them to quit being assholes.  Politely.

I don't think I even want to write anymore.  This blog was a useful tracking tool when it hit the fan so many years ago, before I knew about bullet journaling.  We had ingredients back then too, geeze.  And while we do have successes, so much is harder.  There is just so much more to deal with!  Sasha's diet is more limited, Emily's diet is more limited, and they both have migraine now?!?!  Maybe after Steven retires we'll get a better groove.  Maybe the so called president will be impeached by then OH GOD PLEASE.  God lift our burdens, and show us how you clothe the grass of the fields.  Amen