Imagine side effects are your normal

 I want you to imagine you got a covid vaccine, and you get side effects: headache, chills, body aches, fatigue.  All you want to do is stay in bed and sleep it off.  Now imagine this is how you feel every day for the rest of your life: headache, chills, body aches, fatigue.  Only both your kids are also sick, and you have to homeschool them, and you have to constantly be on the phone with doctors, hospitals, schedulers, pharmacies, and insurance.  And if you want income, you have to manage your emotionally abusive ex-husband (who lives with you btw) due to his gambling addiction.  Don't forget your kids have severe food allergies, and one is autistic.  READY GO.

Now, this is why I NEED you to fight voter suppression, vote for universal healthcare, and universal basic income.  Thanks.

The Science Of Whimsy

 We spend a lot of time on the porch in the sun these days.  (We spend as much time as we can on the street in the rain too, there just isn't nearly as much of it.) Today for the first time I wondered if we would ever long for these days, before the kids grew up, when we would have tea parties and paint parties, singing and imagining flying through different dimensions, picking up fellow travelers.  God, it sounds so idyllic, which is what made me wonder if we'd ever tie nostalgia to a global plague, extreme social isolation, a potentially illegal sabbatical from high school, and of course never ending pain and illness management.  We've worked so hard to get here, it's only right we should enjoy it.  I hope we don't long for it though.  I hope this is truly a starting point.

Oh right, a starting point.  I'm well past that, having been on my period since Dec. 2018.  It has finally been established I have cysts on my ovaries and fibroids on my uterus, thanks to some god awful procedures about which I was not warned.  An MRI has been ordered for more details which will I suppose, inform the course of action.  My only concern is what effect said action will have on migraine.  Other than that, I have no need of any of those organs and they can yeet.  And wouldn't I love an end to the occasional pain that makes it impossible to walk, and radiates down my leg and across my back?  It's just so minor compared with everything else.

Anyway, I'm taking Child One to pediatric rheumatology on monday to rule out autoimmune things.  All the procedures this month have screwed with my migraine med days, so I'm glad that will be technically next month.  But of course, more procedures follow.  Anyway it'll be good to rule stuff out.  We'll still be stuck with an almost useless diagnosis of ME/CFS, but typically the fewer diagnosis the better.

I guess it's up to us to maintain the habits we enjoy, like spending time on the porch together.  Even if we never get the energy to write songs or publish books together or any other dreams we've dreamed, we have always enjoyed collaborating on silly stuff.  It takes an incredible amount of intentional whimsy to battle depression, as it turns out.  I know this is disjointed as hell, but I'm putting energy into singing! So I'm still tired, always tired, never not tired.  But music definitely makes things better.

An Old Diagnosis

 oh my god, fuck FUCK!  Ok, we are as prepared for this as we could possibly be it's fine, really it's not fine but it's going to be...well it's going to be.  Child One had a migraine and took nausea and pain meds and that hasn't happened in years.  But the good news is they worked. My unease lies in the fact he's still in the ucsf pediatric headache system because this is the way of things.  You have a family history of migraine, you present with abdominal migraine as a child.  It may even resolve for a while but you usually end up with some form of classical migraine eventually.  Child One presented abdominally at age 5, was extremely well controlled with meds somewhere into age six, was slammed again at age 9 with both abdominal migraine and ME/CFS, resolved somewhere between 11/12, and is now 14.  The pain is not considered chronic, he usually only gets head pain due to heat.  While that heat threshold is usually low, it's not usually 70 degrees low. Fuck.  FUCK.  Jesus, it's the middle of winter...

But ok, like I said, this is actually the ideal time.  It's the Sabbatical of Happiness, corn is no longer an issue so any and all meds are on the table, we are in the best place we've ever been in, plague notwithstanding.  And, AND!!!, I have fought the goddamn homeschool system in every direction with regard to Child Two and migraine and mental health so I am a fucking pro.  All the pieces are in place, I've updated the portfolio, and I know exactly who to call when the next appointment is needed if it's even needed.  And who are we kidding, now it's just a waiting game to see when it's going to be needed, and that is anyone's guess.  It's February and thanks to climate change and plague, it could be any time, it could very well be next week. In the before times, I'd say we had at least until August.

Speaking of Child Two, it's been a nightmare managing pain all the damn time.  T minus four days till the trigger point.  Although to be clear, both kids are singing so loudly I'm having to hole up in my closet to even write this.  😏We're so awesome.

Music is also pain

 I returned to music and it hurt like hell.  It's kind of like having a baby, that feeling of any pain being worth it.  I mean, it's not quite as extreme, and I didn't play any music for years because I had to take care of my actual children and manage all our illnesses.  Look, it's complicated.  It wasn't exhilaration either, playing my violin for the first time in years, it was more like, maybe regrowing a limb?  So maybe exhilaration was part of it, but that seems trite compared to the depths of what all was going on.  Which is probably why, like an idiot, I played and recorded an entire ukulele song the following morning and subsequently DIED, and will be playing nothing today.  I am however allowed to sing today and here is what's cool.  I first recorded myself singing (in this new era) on Dec 20, and I got a migraine from it.  My brains were getting better even tho I was still getting migraines but I kept singing.  I had six migraine rescue med days in December (down from ten in November), four in January, and even tho I absolutely abused my body the past two days and definitely took regular pain meds for it, I did not get a migraine.  Repeat, I did not get a migraine.

Also, I slept all night and much like playing the violin, I honestly do not recall the last time that happened.  We're talking over seven hours in a row.  It feels like a hug, like a really good hug from someone who knows you and likes you anyway.  Not sleeping anymore has really screwed up my ability to think straight and make complete sentences and stuff.  This is particularly bad considering the amount of medical details I have to chart and keep straight for all the appointments I have to schedule and keep straight.  I have no idea what happened either, I just stopped getting good sleep one night about three weeks ago and it's been on and off but mostly off ever since.  I'm mostly not napping either and if I ever do nap, it's brief.  I used to have a weird night of sleep every so often for no apparent reason, or if I overdid things that day, oddly.  My only guess is the long built up stress of plague and sick children.

Child Two is in so much pain.  Every day is just managing pain and it takes so much work.  We manage the shit out of it too.  Art therapy, baths, sun time, meditation, hammock and music time, finally therapists are available again to help manage depression, we have a plan to do math so the state of California isn't mad at me on top of everything else...Jesus.  Child one is doing phenomenally better since being pulled from school for sabbatical to learn to manage disabling ME/CFS and ADHD plus bonus global plague.  By the way, we did that.  I mean, we're a registered private school and we are continuing education but it's no longer the crippling additive it was.  One less crippling additive thanks.  There are kind of still too many tho. *breathing that shit out* Ok, singing only today.

Child Two has a trigger point injection in T minus five days and those five days are going to suck ass.  Then it's going to take a couple weeks at least for that injection to kick in.  Good god, I hate this song.  I think we're learned that for winter, we need to schedule injections back on our 6-8 week cycle, whereas we can stretch them back out to 10 in the summer when it's not storming because weather fucks up that head of hers.  *more deep breaths* I'm going to dive back into my new TikTok music crushes, because they are giving me life and sustaining me and motivating me right now.  Oh my god, Ben Mather you absolute beautiful freak.  He also has a YouTube channel that is worth it for the heartfelt kazoo solos alone. 💕 

https://www.tiktok.com/@bensrightbrain?lang=en 

Full Body Dread and Sacred Pain

 I've written before about how we don't have enough words to describe exhaustion, and the same is true about pain.  I'd love to research how names for word colors evolved in various languages around the world, and there are some cool videos I've seen on it, but I can't remember them right now because of the pain that makes me wonder about it.  I can only guess there aren't enough words to describe pain because we don't want to see it, and god forbid if we do see it, we sure as hell don't want to remember it.  But clinically, it would be helpful to have more ways to describe pain to my family at least.  

They know I deal with pain all the time.  The kids and I deal with pain all the time, all day every day.  But it's not an "it", not a singular thing we share.  Our pains are different from each other and different to even our own.  Today I was bedridden by stomach pain of all things, not head pain.  The other day it was a neurological ear pain and that would take another while to explain, unless you dear reader have ever had it yourself or feel like googling it.  

And what the heck is even the word for pain that doesn't hurt per se, but accompanies the squeezing sensation, that which is the full body dread?  Not all pain is like that or has that, and it's not something anyone has ever asked me about BUT IT SHOULD COUNT FOR SOMETHING.  I pushed through migraine pain for years, probably a full decade once I was chronic.  And then today, the "painless" full body dread that accompanied the stomach pain of what I assume was abdominal migraine made moving from bed a dealbreaker until 4:30 this afternoon.  Thing Two is on meds and in the tub because her head hurts and also "feels like throwing up".  Her head feels like throwing up, like her brains.  *points to cabesa, los sesos*

I guess ideally we wouldn't need so many expressive words for pain, but it would be nice to have our existence validated.  By the way, fuck the song Silent Night.  Silent, calm, and sleeping in heavenly peace are bullshit erasure of the holy childbirth experience which are NONE of those things.  It's pain and blood and shaking and a life and death struggle that not everyone survives.  Looking away from pain serves no one.  Managing pain in healthy ways should be sacred.  

Pieces Of Flare

It's hard to make good words.  I've only had two migraine med days this first week of December, and if that trend holds it would make for the best numbers of the year!  But I'm becoming less functional which is of course infuriating.  *deep and lovely breaths as I search for and finally find the goddamn asterisk*  I guess, since Sasha is doing better and going in for her much delayed trigger point injection in two days, it's as good a time as any to ME/CFS flare.  I do hate that our household is such a complex machine with so many fragile and breakable parts.  This is a terrible design.  I object.

I lost my shit on the sperm donor who sleeps in my closet tonight.  Thing Two needs us to grow food and I cannot grow food.  It is beyond my energy capacity.  He will face my wrath and panic attacks if he can't figure out how to grow potatoes of any worth.  He will either prove his value by doing this thing or I will likely drive him out of this house and he will become homeless again.  May the odds be ever in his favor, amen.  Incidentally, he also still needs to do his 2019 taxes.  It's almost 2021.  We are not impressed with his complete and utter lack of initiative. 

I meditate a lot.  I'm not really sure how to manage a flare.  Another flare.  Every moment in time is new, a new physical place in the universe, and we have not much semblance of routine which is itself unavoidable and also taxing.  I just hope this flare doesn't get too bad.  I anticipate it won't [o god please] if I ice the relevant muscles, keep meditating, and try really really hard to not overdo things, knowing full well that I'm flaring again.  I...I just wish I weren't managing alone.

We live with my mom and my ex sleeps in my closet, so I'm not physically alone, but I manage ALL OF THEM regarding everyone's ailments and schooling and primary human person raising, and no one advocates for me.  I'm too sick to play music anymore which to put it mildly, is a total bummer.  And what generally keeps me going in life beside that is friendship and camaraderie.  So three strikes, I am way out.  For as helpful as having plans and goals are, this sure seems like a dead end too.  Like, what can be done?  Of the adults in this house, I am the NOT neurodivergent one, and the others seem to lack the ability to do emotional labor in the areas where I could sure use help.  They also refuse to go to therapy.  Oh fucking well.

I think when I quit the blog, I wasn't ready to put that into words, the fact I'm going to slowly wear myself out and then die early, sick, and alone.  Now that I've had about a year and a half of hell and torment to have that put into perspective, I guess there are worse things.  Like being a fucking disease spreading white supremacist anti-masker, anti-vaxxer.  I must go watch Schitt's Creek now, and rejuvenate what pieces of my spirit I can find.

Welcome Back To My World: Consider This Your Warning

 Holy shit, I started this blog eight years ago!  And I quit a year and eight months ago, but it seems like longer than that, with the state of things.  What an absolute tornado of clusterfucks everything has been.  It's a damn good thing I quit when I did, there is no way I could have kept up through:

The worst chronic fatigue flare I've ever had beginning in September 2019

The worst round of migraines plus chronic fatigue I've ever had in August/September 2020

Plague obviously

California fire season 2020 (SoCal is still on fire)

Both kids having more diagnoses, although hey hey, Thing One can eat wheat and corn now.

But probably best of all beside the fact that we still kick ass, is the fact that I have managed to wrestle control of the sperm donor's finances away from him.  Therefore he cannot gamble it all away and I have income once again.  Oh, but I have been on my period for two entire years now.  Follow up with the PCP is next month.

This word vomit blog has remained helpful as a resource to look back on, and unfortunately it may need to keep functioning that way.  For example, two days ago I had a distressing new symptom and I don't even know if it's migraine or ME/CFS related, but it's terrible ear pain.  It kept me in bed for most of the day and it's still coming back to occasionally stab me.  I've had migrainous ear related pain before, but not like this.  Thankfully just my left ear.  Also sometimes my left ovary tries to squeeze me to death, so that whole left side seems to be defective.

Oh but there is more good news.  My new music crush is a "Snarky Aussie Dude" named Emerson Brophy whose music includes but is not limited to U.S. political activism and the annoyance of musical theater nerds.  His music resonates in such a way that it measurably pulled me out of the despicable Aug/Sept 2020 flare.  I had 17 and 19 migraine rescue med days in Aug/Sept, and only 11 and 10 in Oct/Nov.  I mean, usually if I have a good month, I'll rebound but instead my numbers went even lower.  I was able to remember I was a musician and not be bitter, listen to other music and not get overwhelmed, and even start learning a new instrument although it's still mostly too exhausting to play since most of my energy goes to managing the rest of our drama.  So that has been an actual miracle.

Next up, Thing Two needs a miracle.  We retrialed her old migraine preventative that she lost in February due to plague, and it seems to cause migraine.  She's back off it but it took a good couple weeks to get back to migraine base line.  And then she's several weeks overdue for a trigger point injection because we thought we might have been exposed to plague so we had to cancel and reschedule.  (Turns out we weren't but we are DECENT FUCKING CITIZENS) So she is just in manage mode, much to the consternation of the State Of California who would prefer she be in Math Intervention mode.  When I told her homeschool teacher to just go ahead and withdrawal her from school, they backed off.  I actually said I was about six seconds away from withdrawing both kids who technically need math interventions, but we have other shit to work on.  And I love math!!!

Well.  I will go read and think about spacetime and hope it somehow oozes into the kids' brains,  listen to Emerson Brophy's new Christmas Song (it's friggin hilarous!) and think about strategies to get through the next few days, and the few days after that.  Welcome back into my world all five of you.  You've been warned.

ps. Fuck trump and everyone who voted for him, and every piece of shit human who won't wear a mask and maintain social distance.  Get your goddamn flu shot unless you're actually allergic.

Stasis Horribilis

Soooooo, I still have no income.  I have a court date[massive energy suck] and continuing expenses that my ever blessed mom is covering, but it is not sustainable.  We continue to do what Social Security tells us to do to get approved for disability, what Child Services tells us to do for child support, and we occasionally dog sit.  We will be no doubt fighting insurance for the next step in treating Sasha's migraines, and I am unable to wean off my expensive preventatives due to I DON'T KNOW STRESS MAYBE?!  I still have at best a week in between menstrual cycles for no apparent reason and yes, I did get a tests done just in case.  So hallelujah, it's not cancer!  I did have a boyfriend for a minute, a wonderful and magical creature. Alas, I did not even have the energy to maintain that relationship.  I highly recommend him tho, he is fabulous. <3

I cannot emphasize enough how important it is to vote for universal healthcare.  We would be taken care of.

God, some poor dog is howling like its heart is being torn out, it's insane.  I have never heard sounds like that in real life, I wonder what the hell is going on?

I have managed to go one day in April sans migraine rescue meds and I'd love to go two, but I actually took the dogs for a little bike ride around the neighborhood today and made the girls do math, so it's anyone's guess.  I continue brush lettering exercises and #RageBrushing to keep my sanity even when my energy is nearly non existent, and watching Queer Eye is giving me as much life as anything right now.

I feel like I'm at some horrible camp, where the only goal is survival and there are no rules.  It's no way to live, focusing on an imaginary end game. Hm.  Clearly I need to watch more QE.  Thank goodness that poor dog stopped yowling.

Star date f*ck all

Sasha was doing better and now she's kind of in the middle; she's not dying and we're not in panic mode, but she's not doing as well as the last trigger point injection.  [read: I want my bed back!] Emily is actually doing better tiny bits at a time as she eats fewer corn derivatives and weans off the migraine preventatives.  Steven was around and helping but he gambled away all the money and stopped helping or paying child support and is allegedly in rehab.  I think we'll qualify for state aid as soon as I empty the girls' education funds.  As I have slightly fewer migraine days each month but more functionality, I am still crushed by the overwhelming amounts of slack to pickup by the loss of even a shitty parent.

For a brief moment, it looked like hope.  Instead it's life, like it's always life.  For my next trick I'll not lose my shit when my relatives continue to support white supremacy, or the next time my face hits the pavement in a bike wreck, or when there are obscene amounts of phone calls and paper work to get the expensive meds that are late due to too many errors from too many places.  Honestly, my biggest sadness is that the house will never be clean.  It will never be clean.  I'm still motivated to kick ass like my mom kicks ass day in and day out, there is just no feasible goal beside survival anymore.  And that's shitty.

Autism Potatoes

Whenever I used to wonder if Sasha was Autistic, the thought never got very far because she is so verbally communicative and affectionate and I was stupid and didn't know enough about autism.  Admittedly, the waters were pretty muddied by migraine and food allergy.  Only now, 6 years after diving face first into managing, then untangling the food allergies from the migraine (they're not completely unrelated) has it become abundantly clear Sasha in on the spectrum.  It is so freeing.

Gah, we wrote the manuals on migraine disease, and have been working our way through the ones on food allergies for about 12 years now.  Being able to place a name with a disorder means you get a manual.  And even a flawed manual is better than none.  Finally getting the manual on Em's chronic fatigue was helpful and now reading about Sasha in the autism lit means we're less alone, she's less alone, and our batshit crazy life makes more sense.  It all makes so much more sense. 

My eye opening moment came after we arrived home from being out all day due to an exterminator spraying the kitchen.  We had moved the table into the living room, which helped empty the kitchen back down to move-in-naked-empty.  Emily and I had been joking about leaving it there earlier in the day to which Sasha protested, even tho she knew we were joking.  We got home a little late and I was too exhausted to move the table back to its place before bed.  Sasha had a small meltdown over it, and everything clicked into place.  You see, Sasha prefers to eat at the table in the same spot off the same dishes every day.  She was not about to eat if the table wasn't in the right spot and no way in hell was she going to eat anywhere else, like off a stool at the kitchen bar, or picnic style on the floor.  I'm pretty sure she skipped dinner and went to bed.  I went to thinking about all the effort we had to put in to teaching her how to make eye contact as a toddler, among other things, and click, click, click, more things kept fell into place.

It's empowering, knowing what you're dealing with.  I was even able to explain to Sasha the next day why she was flipping out that one dog had to wear another dog's leash for a walk.  It calmed her right down knowing that her brain just likes things to be the same every time, but if she wanted to take Luna Bean for a walk and we couldn't find her leash, this was an ok option too for now.  Hop skip out the door!  She already manages so well, I feel like we've been given more tools, more armor.   And we so need it.

One website suggests the four most challenging autism behaviors are Sleep Disruption, Food Sensitivity, Meltdowns, and Aggression.   Sasha is three and a half out of four.  I WANT ALL THE TOOLS PLZ.  I have more reading, and ever more calm speaking to do.  It's really exciting to be able to move forward, to put more of this damned puzzle together, but we also have to keep living every day.  My migraines are being absolute shit right now as I await the new treatment.  Emily is doing better with her Chronic Fatigue since we got more strict with her diet.  FITUHIjfkjlsfngljah, I have to teach them school soon. 

Well, steven has been to rehab for three weeks in a row and I have money to deposit again.  If that keeps up, it will go a long way.  Our new house is wonderful, even though I am resigned to not being unpacked for a couple years at least.  OH, OH MY GOSH, SASHA HAS POTATOES!!!!!!  My friend who grows so much food for Sasha brought her a couple potatoes that she did well with so we ventured to try some from one of our safe farms and she's doing well and eating potatoes AAAAUUUUGGGHHHHH!!!!!!!!!  Sasha hasn't gained a food in probably years, she has only lost food on her already limited diet.  We tried potatoes from another farm where only some of the food is safe and those ones didn't work out.  But it looks like she can have uncortaminated potatoes and it's amazing Hallelujah Praise Jesus!!!  I don't know what I would do without my good friends, those few who can dig elbow deep into our mess and make pretty things.  I know we're amazing, I also know we're waaaaaaay more work than normal.  Speaking of friends, I'm so glad we have some who are on the spectrum.  No wonder we love them and get along so well!

God of Mayhem and Destruction

What the hell.  Sasha the God of Mayhem and Destruction has struck again.  Forbidden food has been disappearing since February, first gummi swedish fish hearts, then gummi soda bottles, oreo thins on several occasions, and now, half a loaf of bread that was purchased yesterday.  Gone without a trace.  She likes baking for real and doing experiments with whatever's in the cupboard for fun (gelatin, sprinkles, spices etc), but I've drawn a line. You don't mess with momma's sourdough, not when I have a nickel allergy and it's one of my safe foods.  At first I didn't even know it was her or I'd've dealt with it sooner, I thought it was Steven.  He denied it but he's a liar and he also doesn't remember things so who actually knew?  But he isn't around anymore.  Plus Sasha's old nickname was Sasha the Destroyer.  She is on timeout until she tells us what she has done with all the food.  It's gonna be a fucking long ass summer.

I have had a migraine for the entire month of June.  I have a neurologist appointment tomorrow because I will run out of rescue meds this week.  To avoid hospitalization I have been on self appointed bed rest since yesterday.  I'm at the point where people coming over and helping is no longer helpful, I need someone who knows what to do already to come over and do stuff.  HAHAHAHAHAHAHA!!!!  And Sasha needs an attendant from 7AM to 10PM, to follow her around, make her food, clean up after her, and make sure she takes her meds.  If we both get personal assistants, we might start living in a functional household instead of a constant shitfest.  I was able sit and organize the shelves in the hallway bathroom today so that was nice.  Unfortunately, Sasha will need a bandaid or seven and several dozen q tips and half a roll of toilet paper and it will all be shot to hell by tomorrow like the rest of this gross house which no one can seem to keep clean.  Actually, the longer she stays in time out, the longer we can keep it clean...hm

I was so afraid of this, bigger house, bigger mess.  Instead of switching to how I remember losing strength in my left hand as I played guitar less and less as life fell apart a few years ago, I'm going to drown my sorrows in weed and watch funny Youtube videos.  Happy Summer everyone!

Em Has A New Diagnosis omgwhut

Pediatric Chronic Fatigue Syndrome.  I can't even...but I have been even-ing.  Jesus Christ, I could have written the fact sheet!  Although it's nice to read a fact sheet written by someone else about a disease that someone else has, sort of.  I mean, this means that other kids have what Emily has.  Lemme start over.

We UCSFed and it was probably our best and easiest trip ever, because I'm getting better at packing, the kids are getting better at going, and my friend drove us in her big comfy SUV.  I didn't really take the neurologist super seriously (my bad) when he diagnosed Em with chronic fatigue.  I mean, we discussed the blessedness of having access to a pediatric healthcare provider who can rule things out and not attribute a difficult-to-diagnose disease to "being in your head", but I really didn't grasp PCFS vs pediatric migraine until I started reading about it.

And now I don't know what is so different, since there is no real treatment beside what we already do.  I mean, we're super lucky to even have a direction, a diagnosis before adolescence.  We've even ruled out food allergy!  Or, ruled it in rather.  Thinking back, she clearly had abdominal migraine in kinder/first grade, and it didn't come with fatigue.  In fourth grade, I think it was also abdominal migraine with a heavy side of fatigue, and then fatigue quickly took over with a side of abdominal migraine.  Now she hasn't had pain in months, and it's just fatigue.  Just pediatric myalgic encephalomyelitis.  And it sucks so much ass.  I'm reading on all the pages what it's like and I'm reading what she goes through every day, so that really does help.  Finally, an answer for Emily!  Goddamnit, that answer sucks!  AAAAAUUUGH!!!

We're tightening up her diet too, eliminating more corn.  And also moving.  And doing state testing.

*i'm so zen i'm zen af i'm a zen fairy floating away on the zen breeze kicking zen booty bc that is how zen works*

I'm back on Depakote to prevent extra migraine because we're moving, but as soon as we move and settle, school is going to start again.  Something is wrong deep in my body and nothing so far can address it.  Oh, maybe CGRP migraine meds will be available and paid for my insurance by then. Haha.
At least Sasha is doing better with her second trigger point injection.  I mean, she still doesn't sleep at night unless it's in my bed and on my schedule, but we're not in panic mode during the day shift.  And night shift involves sleeping, so major bonus.

We're all really excited about the new house.  We should know the moving date soon, hopefully we'll close by the end of the month.  We'll need so much help since the girls and I are pretty much useless physically and also still trying to "school".  *double facepalms*  You know, it's good to have the problem of so much food and food related equipment to move.  We really are blessed with good fortune and abundance.  So suck that universe.

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.

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.