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.