Monday, April 8, 2019

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.

Thursday, November 1, 2018

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.

Friday, July 20, 2018

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!




Sunday, June 17, 2018

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!

Friday, May 4, 2018

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.

Wednesday, February 28, 2018

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.

Monday, February 19, 2018

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.