Tuesday, December 24, 2013

[Advent] Conspiracy Theory

There was one year that 3 days before Christmas, my mom broke her ankle in three places, and had to have 2 plates and 6 screws added to her leg to hold her foot on straight.  My sister wrote a lovely poem about it to the tune of, "'Twas the night before Christmas", and since we were at her house, my sister and I and eventually my Dad who arrived later, made Christmas happen so to speak.  There's a lot more to that story of course, and we made a lot of memories that year to be sure.  But Christmas comes regardless of how, as the Grinch learned, and as I am ever learning.

This year my Mom is definitely making Christmas happen, as I have not crawled out of the double ear-infection/migraine pit quite yet.  Today I showered, took one present out of a box, wrapped one thing, and took a nap.  And I'm still tired and unmotivated.  And while my ears are still plugged, I did yawn really hard and experience a little bit of pop in one! I'm not gonna lie, it kind of hurt.  But I'll take it, because that's gotta be a good thing.  I do thank God for the timing of this.  I can't imagine trying to get everyone to school all the time.  But, I've taken to sleeping the night through again, hallelujah!  And even if it's taken a migraine to do so, whatever dude.  I will so totally take it at this point.  We will have organic broccoli soup for Christmas dinner and I will so totally take that too.  I ordered some presents too late to be here for "Christmas" but guess what, Jesus wasn't born on Dec. 25 so I guess they'll be here in time for Jesus' birthday now won't they?!

I keep thinking that tomorrow is Christmas Eve, but I guess that was yesterday.  The girls may have to wrap some of Gramma's presents and I don't suppose she'll mind.  "Remember that year Mom got way sick and wrote all the neti pot songs?  Xmas 2013, huzzah!  Jesus was still born."  And anyway, I think our church calendar is flawed.  Everyone was born, only one person died on the cross for our sins.  Easter should be a bigger deal anyway. *shrug*  But maybe I'm less romantic about the winter holiday since it's often (and again this year) in the 70s and sunny here for it.  Or maybe I'm just not stuck on tradition (except for just being together) and I just don't mind shaking it up.  "That year, Christmas was chill.  We went easy on the decor, we wore t-shirts, and had soup.  And I couldn't hear very well."  Maybe I like having a good story to tell, of how life was good anyway.  Ugh, even without caramel popcorn with nuts, and iced sugar cookies.  I really hate my brain sometimes.  At least my kids will never suffer the addiction of "christmas" cookies that my brain is kicking up right now.  Jerk brain...

Life, good.  Christmas, good.  MMJ, good.  I'm going to have to get the rest of that poem from my sister..."There were three days 'till Christmas and all was quite nice, when Shirlena was ambushed by miscreant ice..."

Saturday, December 14, 2013

So you had a bad day or People used to die of infection

I can't remember my last ear infection.  I don't know that I've ever had a double.  I do know that I've never had a double ear infection with a sinus infection and a migraine or 2.  I wanted to be put into an induced coma.  I hadn't been this miserable since my second c-section and now that I think about it, last night may have been worse.  At least before, I could sleep in 1-2 hour intervals where as last night was just ear, jaw, and neck pain, Percocet be damned! That capped 4 nights of not sleeping and just being so, so, incredibly uncomfortable and/or in excruciating pain.  And I can take pain!

So anyway, the visit had been paid to the Dr and once the appropriate medications were determined and ordered and my mom was graciously waiting in the pharmacy for me, the girls and I waited in the car.  They were getting antsy and I was trying to explain how sick I was and how miserable I had been and I completely broke down and started weeping.  They asked me if I was laughing or crying and I just cried harder.  Then Sasha asked me where my head hurt and kissed it.  Best kisses ever.  And thankfully by the time we got home and I had taken round one of anti-colonizations and Advil cold and sinus and got all cozy with soup and a heat sock, I really was feeling better.

Because omg, a slowly building sinus and double ear take-over-and-conquer plus 2 migraines over the course of 6 days is just death and destruction.  The girls missed two days of school bc I couldn't move, and other people graciously got them to school yesterday.  Mom has taken over every duty possible and the girls have taken over getting me water.  The bonus is that now that my ears are so plugged, their random yells and such aren't bothering me!  My friends have been phenomenal, sending me star wars books, making me soup, bringing me star wars mugs (cheap date I guess!).  Oh, I suppose I AM watching Star Wars right now.  But, it's not like I'm obsessed or anything, it's just, more kid friendly than other selections.  And AWESOME duh.

So here's to constant torture, still no word on botox, a nice new Dr. I met, and fabulous friends and family.  Impressive.  And thanks to the good Lord Jesus that Mom is on vacation!!! (cue chorus of heavenly angels)  Shoot, we might even get a christmas tree up before christmas eve...

Sunday, December 8, 2013

The Abandoned [starwarslego]Advent Calendar

It's Sunday night I think. Crush of thoughts, crush of meds...Is this why God gave me brilliant children?  So they could miss lots of school and not fall behind?  So that in playing catch-up I wouldn't have to worry about them skipping grades?  Whatevs yo. *shrugs*  Sasha schooled me in prayer tonight.  This is no joke, how it went down.

Enter me, eating a cookie still slightly warm even having just been put in the fridge. (yes, of course some weird everything-free experiment my mom is trying, involving blueberries, sunbutter and GF flours...)
Me: "Dear God, please heal us all so I don't have to kill anyone tomorrow. Amen"
Emily and Sasha: "Amen"
Sasha: "Dear God, thank you for this beautiful day, and please help Mommy to feel better and not have a migraine so she doesn't have to yell at us and do bad things all day.  Please heal everyone and thank you for our dinner and our warm clothes.  Thank you for me Sasha, Emily, Gwamma, and Mommy. Please help the people who don't know about you, to know about you.  Amen.
Me and Emily: "Amen."

Schooled by my 5-yr-old in prayer.  I guess I'm proud more than anything.  And I go to bed this Sunday night knowing that we mostly got all our meds this week, and that's saying a lot, considering Emily's had 4 days so far of Abdominal migraine, and Sasha went from suspected croup to suspected whooping cough to just an upper respiratory infection with a bonus beginning ear infection thank God, and I've had intermittent migraine of course.  This all began when Emily started coughing just before last weekend.  It's been going around apparently.  So really, the fact that we got almost all of our meds this week is PHENOMENAL.

So there's um, school tomorrow. (slow, tired string of expletives...) I'm pretty sure I don't care.
*plugging my ears and singing*
Nerf Guns and UGG Boots and Gluten Free Waffles
Star Wars Themed Legos, Organic Falafels
Land of No Seasons and nickel-free strings
These are a few of my favorite things...

Girls in free play-clothes with moveable waistbands
Hand-me-down havens and nut-free-zone playlands
Wild girls that fly up and down on the swings
These are a few of my favorite thing!

When migraine barfs
When the cough hacks
When I'm feeling bad
I simply remember my favorite things
And then I don't feel so sad

We must...get well...ugh.  The girls are exhausted from coughing, and of course coughing can trigger migraine.  Bit of a bummer there really.  So the girls are also emotionally exhausted from hacking and coughing and being migrainey and I'm also exhausted so they're just all weepy and I'm trying to not break.  So far, it's going much better than expected, and I would definitely say we are on the mend as far as the coughs go.  Now if we can just kick the migraine, and get back to routine.  Geeze, we've even momentarily abandoned the Lego Star Wars Advent Calendar, that's how out of whack we are!
I know.
I, know.

And I just re-joined the worship team.  Because I am apparently, excessive in my need for bright lights shined in my face.
*plugging ears and singing*
Moving to Europe where corn isn't worshipped
Corn-free squash pancakes with real maple syrup
Not being sick all the ******* **** time
These are the happiest thoughts I can find...

"How do you be a single mom with debilitating migraine, to two kids who both get migraines who also have opposite and life-threatening food allergies?" you might ask?  Simple.  You live with your awesome mom who made you watch Star Wars as a kid (as well as Poltergeist, another story for another day), you are supported by loving friends and family, you research and work your face off, and you crash and burn regularly.  And you sing.  Duh.

Yeah. Yeah, let's do this.

Thursday, November 21, 2013

Cannabidiol is not a Star Wars name

Having coffee in the morning with my girls was something to look forward to, like when they grew up.  It's so funny, they've always done things early.  They both walked at 10 months old, and had huge vocabularies by age 1.  So maybe I shouldn't be as thrown to have coffee with the girls when they're 5 and 7?  They also want slippers for Christmas.  I can just imagine Emily on Christmas morning, putting on her slippers, having some coffee, and reading the paper as she enjoys doing.  Welcome to freakville, where everyone gets migraines, some of us are on various controlled substances for them, some of us take caffeine for them, and some of us avoid caffeine because of them.  Some of us see a couple different neurologists in theory, one of us is between neurologists, only half of us are tall enough to see over the dashboard, only one of us has ever been on a surfboard, and one of us is named after a surfboard.  Every day that three of us successfully make it to school, I think we should win an award.  Every day that at least one of us isn't in pain, I think we should win an award.  And if there is ever a day where three of us make it to school and no one's in pain AND the house is clean, I think we should win a vacation, or at least a year's worth of sunbutter or something.

It is the last half of November and I am doing pretty well sans botox many thanks to Jesus and medical marijuana, courtesy of the rules of the state of California.  Well, the Jesus is courtesy of Jesus. ;-) But about the MMJ,  I am pissed that I didn't have this option in college (and that I didn't go to a party school and use this option anyway) when I had a migraine every day.  Because now instead of freaking out about running out of meds, and worrying about landing in the hospital, I can both knock out a migraine and also not be high, and also not smoke the stuff.  Did you know the plethora of options that are out there folks?  This is yet another reason I am pissed at the FDA.  I have been in a state of torture for years and finally I feel like I'm getting help without the risk of heart attack like my other rescue meds.  So anyway, I'm still working on prevention vs. just rescue.  I will get there, oh yes, I will get there.

As much as medical marijuana is a step in the right direction, it is no cure-all.  The girls still have food allergies, and I'm still scrambling to figure out why Sasha's stomach has been upset for 11 days, with some barf thrown in for good measure.  At least when the girls grow up, they'll have this option.  Kids with abdominal migraine usually come with a family history of migraine, and usually develop regular migraine as adults.  Bunch of crap man.  But life as a functional human being sure is nice.  I mean, I still have to take a nap every day and not overdo things, but I can DO things.  I'm not the human slug on the couch most days anymore.  Geeze...that's huge...

...Hehehe, I guess I'm more like Jabba the Hutt, a huge slug who moves around sometimes, and occasionally bites people's heads off!  Speaking of, I think I have time to watch a little Star Wars before I have to pick up any kids from school.  I've been doing so much stuff lately, I'm a little behind on my Star Wars.  No excuse for that and no time like the present!

Saturday, October 19, 2013

Failenol Pie

It would be easy to say that 5 year olds shouldn't get migraines that make them vomit.  But way crappier things happen to 5 year olds all over the US and definitely all over the world.  I will be honest 'though, it was horrid and freaky to hold Sasha as she cried because her head hurt.  But I feel that this was a learning experience.  For instance, when Sasha first complains that her tummy hurts before complaining of head pain, don't bother giving her Tylenol because she's just going to throw it up along with everything else in her digestive tract. #failenol  It also reinforced the fact that we've got a great dog.  She escorted me around during vomit clean up, and didn't even try to eat any of it.  Such a good girl.

There are some definite upsides to all this.  Like if meds aren't going to work, all the better.  Meds have corn in them for the most part, and we may as well save the corn-free Tylenol for real scares, like another earache, God forbid.  And this was short, less than two hours start to finish.  Well, more or less.  After the bath, dinner, and headstands on the sofa, she said her head was hurting a little again.  I put a stop to the headstands and we talked about not overdoing things after a migraine.  But she's 5.  She's 5 and she's Sasha.  Thankfully she's asleep.  I do hope and pray that nothing comes back tomorrow, no pain or nausea or puke, and that nothing new pops up.  This is her second migraine in 4 months.  And for #casaespinoza, that is not a bad track record at all.  *shocked and horrified face*  Because what would we do if she ever needed meds?  Everything has corn in it, everything!  It would be an absolutely amazing blessing if she gets migraines like Grandma; infrequently, no prescriptions required, just pain, then vomit, then good to go.

Boy, the things you never think to pray for.  "Dear Jesus, please let Sasha get migraines like my Mom, instead of like me."  Dang, little bug just got out of bed...she can't sleep and her head hurts still, but just medium, and not super large like earlier.  She likes the music from The Devil Wears Prada, the movie Mom and I were watching.  We'll be switching to Happy Feet momentarily.  *sigh*  It could be so much worse.  Thank God it's not worse, and that the dog is here for a good snuggle, and that she doesn't eat vomit.  Such a refined palette.

Wednesday, October 16, 2013

"Put another nickel in..."

It has been brought to my attention that to some, everything in life does not directly correlate to a song or a movie quote.

Me: "Hey mom, are you using the internet right now or can I flip it off and back on? It's not working for me."
My Mom: "Flip it."
Me: (...into shape, shape it up. Get straight. Go forward, move ahead...)

As I flip the switch that makes the internet go off and then back on, I head to the kitchen to get a move on making my tea.  There are 37 seconds left on the timer for my tea bag.  Which obviously brings to mind the scene from Monty Python's Holy Grail.

King Arthur: "Old Woman!"
Dennis: "Man."
King Arthur: "What?"
Dennis: "I'm a man."
King Arthur: "Oh, sorry. Old Man, whose castle is that there?"
Dennis: "I'm 37, I'm not old."

I'm totally not making this up.  And what goes through everybody's heads all day if you're not thinking of songs and movie lines?  For instance, someone's car alarm was just going off and it was annoying the heck out of me.  But it was about 90 beats per minute and for whatever reason reminded me of a song from Hobbit, although it was definitely too fast.  Which brings me to knitting.

Knitting also has a rhythm, and maybe that's why I've found it to be so comforting of late.  Also to avoid giving myself carpal shoulder if that's even a thing, I have to consciously and constantly relax every bit of my arms and shoulders while knitting.  And maybe, just maybe, the fact that I could stab someone's eyes out with my bamboo needles while looking like a harmless knitter is a back-of-my-mind bonus.  Knitting is something I've re-picked up as a survival mechanism to get me through this no-botox phase.  I've also quit the band at church, and am willing to ditch just about anything, which has had a couple of interesting effects.

1. It's made feeding my kids more enjoyable.  I feel like we've kind of kicked ass in the food department, but not been able to enjoy it.  Tonight I experimented with leftover mashed potatoes.  They were soooo good.  And we got to mix them up with my neighbor's fresh from her garden bok choy.  It does not get much better than that.  I had to pay a friend to clean my kitchen first, and skip a school meeting to do so but guess what?  No effing migraine.  *sigh*  Mission accomplished, and NO MOMMY GUILT.  It's such a battle bc I love my daughter's school and the fabulous people who do so much there.  But I am ZERO help to anyone with a migraine.  Especially to my own family.

2. In my withdrawal from large community, I have connected much more to people one-on-one.  It's better for my head (because I just get WAY too excited around groups of people!!) and it hasn't really been on purpose.  But I dig.

Ok so three things. And the 3d is that I'm praying more.  Or maybe I'm praying differently more.  I'm quiet during prayer more.  And what I've observed in more quiet is that right now I'm in a huge "change and let go" phase.  Because right when I think I've got a handle on something, the game changes and I have to let go of more stuff.  It leads to very balanced living I guess, where you plan as much as you can, but really really live in the present.  Or as Pumbaa would say, "You have to leave your behind, in your past." or something like that.

Speaking of planning, I get to have yet another visit with the ole' GP tomorrow and beg for samples of my triptan since barring a divine healing I will be running out of my regular stash before I get a refill. Wait, I can refill in 8 days and I have two left.  There's a chance I'll make it, it just depends on what kinds of 8 days it is, and since I cut them in half and get potentially 4 doses out of them...hm...hmmm...I'm also going to see how she feels about medical marijuana.  Then I have to see how I feel about it.  I with I could get the strain from Colorado that doesn't get you high called Charlotte's Web from Realm of Caring, but they only serve residents of Colorado.  Damn.  Because what if the oil worked for me, like at all?  I've never been high (on illegal drugs) in my life.  Not to worry Wilbur.  Tonight I cooked dinner, have a clean kitchen, am ready to knit, drink tea, and eat a cookie.  And I haven't been on migraine meds in 29 hours.  Booyah.

(cue 'Pump Up The Jam') (cue image of me on a dance floor, dancing awesomely, whilst knitting.)

Tuesday, October 8, 2013

Rule 9

See 'cause I could shower right now but I feel like that would just be temping Monday to show up at my pillow at 6:20AM again, as he has done for the past two mornings in a row, trying to rip and burn a hole in my head and face.  It's about as awesome as it sounds and while today one kid actually made it to school and tomorrow it's my goal that both make it to school, I'd rather do it with questionable odor and less trace of Monday than the other way around.  That is to say less odor, and more Monday.  That is also to say more question and fewer meds.  Damn, these are things I had not calculated when I wrote my rules for surviving without Botox.  It makes me sangry.  To be sangry [sad+angry] over not having the energy to shower is probably a #firstworldproblem.  But everyone has to deal with Monday.  Monday is a direct result of sin.  Monday is a real asshole.  There will be no "Monday" in heaven.

Anyway, my rules aren't holding up real well.  Well, maybe just a couple of them aren't:

Rule 1. Never talk about fight club. (obviously.  still intact this one)
Rule 2. Never take a whole Relpax. (i only get 9 a month.  and i already broke this one.)
Rule 3. Try not to drive on Toradol. (so far so good.)
Rule 4. EAT. Especially on Toradol. (more or less good.)
Rule 5. Don't look down. (ugh....)
Rule 6. Exhaust your options. (always, always an exhausting work in progress)
Rule 7. When you fail, give up, do something fun, and try again later. (hard to do actually.)
Rule 8. Watch Star Wars. (again, obviously. done and done.)

The rule about not looking down crashed and burned today.  As we prayed about Emily's stomach hurting and Sasha's ears still (STILL!) hurting, it just felt like we were dying, my whole little family.  We survived September and 8 days into October...8 days into October I understand the verse "...so do not worry about tomorrow, for tomorrow will worry about itself.  Today has enough trouble of its own."  Well no shit.  Tomorrow is an absolute blank and I pretty much don't give a friggin' care about much beyond waking up WITHOUT Monday still trying to claw my inner brains out.  Funny, the passage just before that verse is Jesus telling his disciples not to worry about what they will eat, drink, or wear, but to pursue the Father's kingdom and righteousness instead.  'Cause he had their back Jack.  Talk about not looking down.

What would Jesus say to me?  Don't worry about if your meds are gonna last?
Charli 1: "That's dumb dude, he would just heal you."
charli 2: "You're dumb dude, you were born now, and he HASN'T healed you yet."

Well what he said to his disciples who wrote it down and spread it to the whole world was to not worry.  And what he prayed for in John 17 was for the fine folks who would believe in him through their testimony.  So Monday-dressed-as-Wednesday Oct 9 can suck it.  I will not tempt Monday by exerting the energy to shower, neither will I worry whether or not the meds will run out.  I will await my miracle in the bliss that is the complete opposite of ignorant.  Every second that feels like death is a step closer to survival, and I will look up, I will fight for it tooth and nail.  Shoot, and there went Rule 1.

Rule 9. Look up.

Make Emily coffee in the morning to make sure her stomach ache doesn't come back.

Rule 9. Look up.

Procure non-candy items for Trunk-or-Treat because my NIGHT MOPS ladies wanted my girls to be able to actually participate (gasp!!!) so they outlawed candy because there isn't a candy on this earth that Sasha can have unless I make it.  Tears.  Right now.  Of joy...

Rule 9.  Done.

Friday, October 4, 2013

If she weights the same as a duck...

I have been weighed and measured this week in so many ways, and am happy to report that I have been found to weigh and have matter!  I have also stood up to the thorough (and helpful) goings over by a nutritionist, and even managed more seriously than ever, to play at being my own neurologist.  As in, a re-start of what is now a $42-a-month-prescription-serious.  Thank you Tricare.  [read: Expletive Tricare.]  I'm sure it was important that that med doubled in price over the last year, but I digress. [read: Mail Order Pharmacy.]

It turns out that being a voracious information hound has its place in this world, especially if you're in-between neurologists and trying to bring your number of migraine days back down from 15 a month to around 8.  Or maybe more especially if you're a food allergy mom and your neighbor's family is here for a visit and needs to use your wifi.  I love my neighbor, and her entire family it seems!  The more of them I meet, the more I like.  We've had really good visits, and it turns out that one is a pharmacist, and one is a nutritionist.  Jackpot!  Well, I haven't exactly learned much, but I've been EXTREMELY validated. Like, way super.  And that help unlooked for was just what I needed.

In one fun, sort of med-sparring conversation we brought the nutritionist up to speed on my med situation while talking to the pharmacist about the classes of drugs I've been on, was currently on, and was about to lobby my GP for with regard to migraines due to my neurologist situation.  But before all that I spilled my guts and life story to the nutritionist and had good answers for why the girls and I lived here, how I manage their allergies, how we eat what and why, etc.  I did understandably confuse the nutritionist quite a bit tho' about our eating habits.  She got as far as "like Vegetarians who eat Meat" and I didn't even bother delving into "More like Paleoites who eat limited grains and legumes but no nuts." She was very sweet and gave me some ideas on how to cook beets. And at the end of it all, it made me sort of review everything which was good since I've been trying to deal with the big blow of not having Botox available 'till at least the new year, and that's best-case-scenario, assuming the gub'ment remembers how to work before too long. (fingers crossed!)

I feel better now, I truly do.  Laying my case out to people who didn't know the particulars, seeing that my research has paid off, my GP giving me the go-ahead on the wth-expensive old-new med and new supplement...I don't feel as crazy, as desperate.  I mean, holy cat brains, I've had 3 migraine days out of 4 so far in October! But I'm still excited about trying the sautéed beet greens.  And hello, I started watching Sherlock.  Khan and Bilbo are in it!!! And my blessed and beautiful mom is letting me pay less rent so I can resume regular massage therapy.  Just the thought is relaxing.  Mmmm...meditating, knitting, massage, throwing away the toys on the floor...yes. Yes I will survive and make the paleo pumpkin/squash bars that I've already roasted the squash for...mmm...

But first I'll watch Sherlock.

Sunday, September 29, 2013

Pray for me, before the laundry Kraaken eats my food porn

Pray for me as I storm my GP's office yet again tomorrow, for the second time in two business days. Pray for wisdom and politeness, and that they do my bidding as I become my own neurologist until at least December. I go armed with charts and bottles and dates and frankly the numbers don't lie kids.  Either I get back on another preventative med, or I don't make to...I predict the third week in October without being flat outta attack meds.

I love my GP (general practitioner.) She tends to ask good question, be interested, and listen well. I'm going to throw another supplement and a med at her and see what she says. We will no doubt commiserate over tricare's dumbassery.  But I do not know what will happen next...I do know that I must have hope to cling to. I can't just sit, ok lay here 15 migraine days into a September that isn't even quite over yet and not have a sleeve full of tricks. Old habits die hard, and the kids have been pulling out all the old clown stuff again. And every day I wake up to a clown painting labeled "Don't Cry Over Spilled Milk" next to my bed. My Dad liked it and hey, it goes with my furniture! #nofoolishnofun And in this case it may be survival of the foolish.

Because I could just wait patiently like a good patient for my appointments, suffer, run out of meds, and watch life crumble with varying speed and force, or I can make myself a huge pain in everyone's ass until hope comes out of hiding.  Bat-Crap-Crazy, Food-Allergy-Mom was just phase one of my metamorphosis. Sasha's ears may hurt for 6 more weeks, give or take. They're fine, just healing from a nasty infection and fluid.  Emily's stomach started hurting again tonight. She's getting coffee in the morning, pain or no because those suckers like to come roaring back for days if you don't squash 'em good.  So pray for me. We've de-glutened, we've de-corned (phase 1), we're pretty much opposed to dairy, and we've been no-nuts forever. We are now on top of that, delving deeply into the realms of the neurological, the insurance dumbtastic, the medical marvelousy and of course, ever bowing in shame and homage to the ever present Laundry Kraaken.
Pray for us.

Oh my gosh you know what I ate tonight? A hamburger from In N Out NOT protein style!!! *chewing fingertips* It was, it was, it was like Christmas dinner. It was like a hug. I literally don't remember the last burger I ate on a bun.  Evil evil frankengluten. Oh man...sweet and tasty and satisfying and warm and yummy frankengluten evil bun Mmmmmmmmmmmm...
Wow.. #singlemomfoodporn #prayforme #notjoking

Saturday, September 28, 2013

The Ridiculon

I guess what I really want is a laser beam to come out of the middle of my forehead.  Not to blow stuff up, but to communicate things succinctly.  Ok, and sometimes to blow stuff up.  It would have saved me so much damn energy on days like Friday, when I spent the time I had, but the energy I didn't explaining why I needed more than one goddamned set of epi pens, how I had already paid Emily's neurologist out of pocket no less, and how I was up a creek until my insurance decided to get their butts in gear, fix their mistake, and approve me a new neurologist already.  It would have been nice to have the day before that at the girls' dentist office when I was explaining what corn derivatives do to Sasha, why it's a problem that I can't find ingredients in the products they use (except for potential tree nuts) and why we have to modify the papers if I'm going to sign them.  However, no amount of stop-wasting-my-energy-please-beam would have been helpful when lo-and-behold I did magically get approved for a new neurologist the day I stormed the office and demanded answers.  Third time really was the charm!

While approval should have taken a week it took a month and a half, thanks to a code mix up somewhere in the bowels of my insurance.  And where I was only getting 8-9 migraine days a month on Botox, I've had 13 last month and 14 so far this month.  We'll see what the numbers are for this grand, terrible experiment by the time I meet Monsignor new neurologist come December 2.  I refuse to speculate on whether or not he'll actually be helpful. *slight wave of nausea*  I've ordered one more supplement to add to my regimen, resigned the ability to parent or keep the house clean [at all]for a few months aaaaaaaaaaaaand...I think that should do it.  Oh, and I have to ration the meds and time them just right for driving so i can get the kids to and from school, etc & etc.

I literally stayed in bed almost all day today.  I took heavy meds last night because after explaining everything to everyone, my body gave out.  Is Emily seriously Dr. Michelle's only effing food allergy patient?!?  'Aint nobody got time for that!!!!!  Now I'm in long ass crappy road trip mode.  Short on gas, short on food, and it's hot outside.  Not making it is not an option.  Ready, go.

I know it sounds a lot like despair, but it's not.  It's processing.  I write and burst into tears now so I don't do it while I'm driving...as much.  I'm trying to regain patience with my kids.  Ugh.  I bet there's a german word for when you stare at your own life with morbid curiosity as to what will happen next.  In other news, I ate cereal out a salad bowl tonight.  And by salad bowl I mean a bowl made of a piece of lettuce.

Me: "Girls, look at this piece of lettuce!  It's shaped like a bowl, I could totally eat cereal out of it!"
Em: "Haha, no you couldn't!"
Sasha: "Haha!"


Wednesday, September 4, 2013

No nuts Donuts

     I'm hungry, and tired, and I've had a migraine for way too long.  8 days out of 8 and I won't even write down the phrase that just came to mind.  It's too late for me to be starting a blog post, but I'm not sure that matters much right now.  Mmmmmm, a donut matters right now.  Oh the things that come to mind.  Really, the important stuff is as follows:

-Sasha's maladies have gone from fever and chills and body aches, to croup, to a nice wet cough, to a double ear infection and plugged up hearing, to just plugged up hearing and only occasional mild ear pain.  And it only took about a month to get through all of that.  Considering that she hasn't been sick enough for meds in about a year and a half, I'd say that's not bad.  But omg...

-Emily's 5 day abdominal migraine went away finally, but not without her fighting me tooth and nail to drink less than a cup of coffee as per her neurologist's instructions.  For 4 hours solid.

-In addition to no snacks being served in Emily's class, there is now no birthday food allowed in Emily's and a few other classes at Emily's school, only non-food birthday treats.  Because she's not the only kid with allergies, hello!

     So, Huzzah, I think I really do only have one school's worth of food to worry about.  Which is awesome because I don't think I'd make it otherwise.  There is somehow a hold-up in getting a reference to a new neurologist to do botox, imagine that!  I am truly a little confused as to why Jesus hasn't healed me yet.  I figured this was my chance.  I upped all the vitamins and supplements to all the levels that work for everyone else and figured this was my chance.  But, whatevs.  What can you do but give up daily?  I used to try daily but really the key to success is accepting that you're going to fail.   You are going to fail and everyone is going to fail but somehow this world keeps spinning doesn't it?  The cupcakes don't get made and neither do the beds but somehow the Lord provides something to eat and a place to sleep.  And 'though your head may burn and maybe your hair doesn't look the way you want it to, but maybe your kids got to school enough days this week.

     I sure hope for better.  I keep hoping that some year I'll actually participate in helping at Emily's school, besides of course being that crazy food allergy mom screaming about no-nuts this and that.  (You're welcome school)  Hey, I actually sold cookies with nuts in them this year!  I'm going to pick up frozen cookie dough with nuts in it, not freak out, wrap it in garbage bags, and deliver it to my cousin!  You're welcome school!!!  But I hope someday to tread water, instead of just floating on the current.  I hope some day to dream of swimming, in an actual direction, instead of just treading water.  Although, there is a certain freedom in completely letting go, because there is no point in trying to hold on to anything, because it just gives you more migraines than you're already going to get.

     It's not as bad as it sounds.  Even with 8 days of 8 on migraine meds, I still took care of the kids, with loads of help from my Mom of course. They got to school on some of those days, wore clothes, ate food, got their meds...we may have even left the house voluntarily at some point, I don't really remember.  Oh yeah, we totally did!  We had an awesome visit with some family!  We went to the aquarium, the beach, the whole 9 yards.  See, not all bad at all.  And I'm so happy to see the kids doing better.  I just wonder how long I can let go of everything and be free before I disintegrate.  Actually, that's an illusion.  That's how I have to think of things, when really I'm wound up so tight I'm about to implode.

Why are there no Gluten, Nut, and Corn free donuts in this house right now?  That is the real question.  If only Sashily's kitchen were real.

#becauseeatingshouldntsuck  #migrainessuck #donutsaregood #sashilysnonutsdonuts

Tuesday, August 13, 2013

*edited for privacy OR 2nd grade round 1

I'm glad there was peanut butter in Emily's class on only the second day.  You know, let's knock this out early.  I love Emily's teacher, she was on top of it.  First a parent asked if she could bring cupcakes for her kid's birthday today.  Her teacher said No, because of the food allergy issue.  She said that the birthday mom could bring apples and carrots.  Boom!  So what did birthday mom do? Bring apples with caramel dip.  And when the caramel dip ran out, she whipped out PEANUT BUTTER?!?!!  So, Emily high tailed it and now I'm writing my first letter of the year.  Em's teacher said if stuff keeps happening like this we're going to ban food from the classroom altogether and just have a birthday crown and stickers or something.  My heart sang!!!  If you missed my jubilation a few days ago, there will be no classroom snacks this year already.  So if we can get this birthday crap nailed down, I may just have one school to freak out about instead of two.  That's only half as bad!  Ok, so here's the letter* I'm sending to school with Em tomorrow.  We'll see how atrociously it gets edited and then sent to the parents.  Or maybe, just maybe it really is a new year...

Happy Second Grade!
     I must admit, this letter never gets easier to write.  Due to Emily’s life-threatening nut allergy, I need your help to keep her safe in the classroom.  Peanuts, Tree nuts, basically every nut on the planet could very easily kill Emily if she eats it, plain and simple.  There is also a risk for severe, life-threatening reaction if nut products or particles even get on her skin or if she breathes in too many air particles contaminated with nuts.  Scary stuff.  Emily has also had reactions to Pineapple, Pomegranate, and Asparagus, but none so scary as the reactions she’s had to nuts.  And all it takes is one mistake one time for anyone with a nut allergy’s life to be over, even with all the proper medications and procedures in place.  (Google Natalie Giorgi’s tragic death at a family camp in Sacramento at the end of last month. http://www.sacbee.com/2013/07/30/5607195/years-of-caution-about-peanut.html)

To make second grade safe and awesome, I’m asking for your help in two ways:
  1. When bringing food into the classroom for birthdays or other celebrations, please refrain from any Nuts or Nut products of any kind such as peanut butter, trail mix, or nutella.  In the cafeteria there is a “No Nuts” table where Emily and the other nut allergy kids can safely sit. (Last year ours was the smallest school in the district, yet had the highest concentration of nut allergy kids!)  In the classroom, it’s just too closed an environment and it’s also where the students spend all their time together.  
  2. If anyone plans on bringing food into the classroom to share for any reason, please let me know via email a couple of days ahead so that I can plan something for Emily since most products from bakeries aren’t safe due to cross-contamination.  Emily has spent the last two years coming home disappointed because someone surprised the class with cupcakes or treats for a birthday that weren’t safe for her to eat, even though it was against class policy to deviate from the birthday celebration schedule, when I would have known to plan a safe snack for her.  That’s life with a nut allergy, but I could very easily just pack her a safe treat if I know ahead of time.  I’m not sure what the class policy on birthdays will be this year, but if there’s going to be food, please let me know so I can be sure to have something for Emily! (:

Thanks for your help Parents!  If you have any questions, please ask.  I may not have covered everything and I love talking about food allergies.  Emily’s younger sister has Wheat and Corn allergies, so we make and eat all kinds of weird food!

Emily’s Mom

Thursday, August 1, 2013

Sashily's Kitchen

There are a lot of mile markers in life latey.  All our birthdays are happening, we've been a year and a half without wheat or corn, and we did our first nut, corn, gluten, and dairy-free camping trip. (It was our family reunion, and someone else brought nuts every, single, day.  Don't get me started.) But everything being food related, stresses me out to some degree.  Perhaps it's all exacerbated by the fact that I don't know when/if I'm getting botox again since my insurance changed carriers and I have to change neurologists, and there aren't exactly a plethora of neurologists who do botox and take my insurance.  Botox for migraine is expensive as hell. And let me tell you, hell is expensive.  Right now I'm in the jump-through-hoops-and-wait phase.  Speaking of neurology, Emily has to change neurologists too. Hers left the practice where she went, not sure why.  What's going on man?!?  Emily got a lot of migraines this summer compared to the previous 6 months.  Hopefully things settle down once school starts, and don't get worse before they get better.  Blegh.

Anyway, the beginning of school seems like the REAL New Year to me, possibly because I come from a family of teachers.  My New Year's resolution is to avoid anti-anxiety meds.  I will do this by following Grumpy Cat and Honest Toddler.  Funny thing, for my birthday I want a new pill box, one that is wooden and won't break, and is handmade in Canada.  My mom already bought me a sensible bra.  Can you say #old?!?  Well, Sasha wants a new carseat for her birthday and that's pretty sensible, and she's gonna be 5 and not 34.  Maybe we're just all kinds smart like that.  Maybe we both know that we're not going to get what we really want.  Sasha's not going to get a pet unicorn, and I'm not going to get a personal assistant/food allergy advocate.

But maybe no forgetful parent will bring nuts to class for snack this year.  And maybe no forgetful teacher will actually go so far as to hand them out if nuts actually make it in.  And since I figured out how to sorta make gluten and corn-free paint, maybe Sasha can fingerpaint in Pre-K without getting itchy from all the cornstarch.  And maybe this is the year I'll have the energy to actually make her some rice flour playdough so she can have that to play with as well.  And I can still hope beyond hope  that there won't be food activities every single week at one school or the other.  Maybe anti-anxiety meds aren't a bad idea.  Why did my massage therapist have to move away?

I heard a sermon last week on fear, not long after a bible study question asked me what I feared.  I fear earthquakes and driving a stick shift.  (-;<  But seriously, I dread persistent suffering.  Because that is pretty much my life, and it sucks.  Having no choice but to stand in the kitchen and make things out of weird specialty ingredients with recipes I have tweaked to go from simply Gluten Free to Gluten, Nut, Corn, and Dairy Free WITH a migraine, is what I not so much fear as dread.  Because it will happen, a lot. I also dread having to as politely as possible, communicate the importance of keeping Emily's classroom nut-free.  It sounds simple.  It is not.  And then there will be unforeseen food issues all year, I promise.  So I need to have a freezer and pantry stocked and ready to go and a calm cool head ready to deal.  With a migraine.  Lest Emily die in school or Sasha's hair start falling out again. Iiiiiiiiiinhaaaaaaaale.....Eeeeeeeexhaaaaaaaaale.......

Ok, on a separate but related topic, I would love another title besides [bat-crap-crazy]Food-Allergy-Mom, Musician-Has-Been.  I make kick ass, mostly organic marshmallows.  (I haven't ordered organic gelatin yet, but hopefully it works just the same.)  Now, the problem with me giving music lessons post-children or doing any serious job beside keeping my children alive, is that I barely have the energy to do that.  But in some dream of mine, I have energy to both feed my kids AND make kick ass organic marshmallows in a variety of flavors, and actually sell them to unsuspecting patrons. Then when I introduce myself to people, I wouldn't sound completely pathetic.  Instead of saying, "My ex-husband pays me to keep our children alive, and also I get heinous migraines all the effing time."  I could say, "But I also handmake allergy-friendly kick-ass organic marshmallows, some of which are dipped in fair-trade chocolate.  Here's my card."  And it would look awesome, of course.  Fun to think about at least.  Makes me want my decaf coffee coconut marshmallows. Mmmmm...

Sashily's Kitchen "because eating shouldn't suck"

#sashilyskitchen #becauseeatingshouldntsuck #screwyoufoodallergies

Friday, June 14, 2013

Dark Energy

Change my attitude toward life and food, if not my circumstances.
Change my tolerance to the antics of my children, if not the amount of energy I have.
Change my lust for energy, if not our tolerance for pesticidal corn.
Change my desire to tolerate pesticidal corn.

Definition of stupid:
Being surprised that corn makes me itch the way chocolate and wheat do.  Um, corn makes Sasha's skin come off and hair fall out.  And I am surprised WHY that I am sensitive to it?  Because I am #stupid.  Or maybe it's just hard letting go of what little remains, like chips and guac from Chipotle.  At least we can still have guac.  I am just coming to terms over and over again with the fact we have to make everything.  everything. (every. thing.)  And bless my friends who find us recipes, seriously.  But now I'm trying to juggle and shake out of the space-time continuum the energy that isn't there to make every. thing., while inside me I try to subdue the selfish beast that is tired of suffering and feeling like shit all the time.

Whoa momma, deep breaths.

Because, I know people with babies in the hospital, people with toddlers in and out of the hospital, others who sold everything and moved to an orphanage in Haiti where they see tragedies all too often, and still others who sold everything and moved to other countries to illegally spread to gospel, one of whom is currently kicked out and separated from the rest of his family.  I look to them for inspiration, because the roads they walk are not easy, to put it mildly.  And I know I can walk this sucky, sucky road.  But I need to do it differently.  I know there are ways to suck less.  But how oh how?!

We are one week into summer and we're 3 for 3 for migraines, the girls and I.  (I've actually had 2, and one was super heinous BLEGH!!!) My mom hasn't had one, but she's got a week of school left.  Em hadn't had a real migraine since December so that's not really so bad, but poor Sasha finally got her very own migraine journal app on my phone.  It's a rite of passage unfortunately in this house.  Changing routines is always hard, there's the end-of-school stress let-down, and who knows how much the girls are actually taking in the news that 1. Daddy has a girlfriend and 2. He's having a baby with her.  (Sailor *smh*)  I am worried about that kid's future since the severe and life threatening food allergies come from Daddy's side.  Lord help his baby momma...and her 2 other kids...

feeling or showing satisfaction with one's possessions, status, or situation

Food - check
Clothes - check
Shelter - check
Kids in their bedroom next to mine breathing unassisted - check
Contented - not even close

God, if you let me live another day, surely you must be willing to change me somehow.  Surely I am not destined to stay this same mom, this same musician, this same friend, this same person.  I absolutely refuse to believe that.  Amen.

Yup.  I feel better already.

Tuesday, May 28, 2013

How the Millenium Falcon Saved Us

Sasha hasn't tried to scratch her skin off in a while so, she was probably due.  Problem with this time is, we don't know what caused it.  She doesn't have any outdoor allergies, just food "sensitivities" (read: makes her hair fall out etc.) so when she came in from the playground with a good itchy face rash going last week, her teachers were concerned. (read: a little freaked out) They called me asking for her allergy medicine, except that she doesn't have any because all medicine has corn in it at least twice. Cue second Doctor appointment to try to solve this problem.   Cue ping-ponging between the Pharmacy and the Doctor's office and having to threaten to fire the Doctor just to get corn-free meds for Sasha.  I love our Pharmacist 'though.  It's probably helpful that our Pharmacists are our cousin's neighbors.

The phrase "just to get corn-free meds" is a little misleading.  There's no "just to get corn-free" anything in this country.  I need to learn to shake it off better, or maybe just roll with it, the fight to get corn-free anything.  At least when I marched into that Doctor's office today I had cooled off from Friday, when I had to explain our entire family history, what happens to Sasha when she gets corn, and about 6 times each that no, I don't want a liquid antihistamine or acetaminophen because it will have corn in it and no, I don't want a pill because it will have corn in it and yes, I will go online and purchase pharmaceutical equipment if I have to and measure half-capsules worth of drugs and package them myself even though I know it sounds crazy because I'm a food-allergy mom and we're all bat-crap crazy and will you just call the effing pharmacy like the Pharmacist who showed me the jars of what he's going to use asked me to ask you to do and no, I don't want to go to a different effing pharmacy, what is your problem!!!!!  And in the end, she didn't call the pharmacy, her sorry ass "prescription" didn't go through (for the second time from that office)  and I had to get notes from my cousin's neighbor (the Pharmacist) take them back to the Doctor's office, and threaten to fire her and go to a new office entirely when suddenly T-minus one hour later...I get a phone call from the Doctor saying that I finally win.  But of course she didn't use those words.  *sigh*  I may fire her anyway.

My cousins's neighbor explained that it's hard for Doctors get prescriptions right electronically when they have to think outside the box.  I believe it.  Even he had funny looks on his face when I explained what happens to Sasha when she gets corn, and how I have to call companies to ask about the sources of their ingredients, and also when I showed him the list of corn derivatives from one of the corn allergen websites.  I just wish there was a badge I could flash at stupid Doctors, a certification of some kind for "Bat Crap Crazy Food Allergy Mom: Knows Her Shit".  If it's never Not going to be a battle, I may as well have a cool badge or something, geeze.  I even impressed myself by whipping out the source of the filler my cousin's neighbor was going to use in the capsules, were we ever to get a proper prescription!

I guess it didn't feel good when the Doctor said that what I was asking sounded crazy.  It also didn't feel good when the day of the appointment, the office called and said that her primary care physician retired and insurance wouldn't cover the appointment until I called and changed her primary, information it would have been nice to have before before the DAY OF THE APPOINTMENT.  Supposedly I was successful in the following trail of phone calls it took to make that happen, I pity the fool who wants to fight me on that one.  Not 5 minutes after dealing with that mess I had to walk out of the house to Sasha's last-day-of-school festivities, nearly in tears but for the giant lego starship my Mom just bought me.

I realize I'm not a 10-year-old boy.  But I do live with my Mom, and that has to count for something.  I pay rent, and do dishes and laundry so, whatever.  Mom must've seen my countenance lift when I saw the giant box way up high, and for whatever reason decided to talk the guy in the toy store down in price and with her teacher discount, paid less than you can get that thing anywhere, promise.  Oh wait, I totally pointed it out, that's right.  Anyway, yesterday with my other single mom friend and her three boys and my two girls we had the most epic Star Wars lego day ever, complete with light saber fights.  Fake light sabers of course.  But as I can't have a chocolate croissant or any much other comfort food because I'm defective and don't really love ice cream, just thinking about putting the Millenium Falcon together really did a lot lift my spirits.  And thinking about how my mom friend and I geeked out over it while the kids were outside...oh my gosh, that was the best.  And I still have to finish putting it together!

Incidentally, I'm also playing a lot of music the next couple of weeks, singing and playing both guitar and piano, which is something I haven't done in I'm not entirely sure how long, but probably years.  It will be good to throw myself into that, as long as my body holds up.  Nerdfest, musicfest, that should help with the stresses of the ignorance of the medical world vs. Food-Allergy-Mom-Who-Can't-Have-Wheat-Or-Chocolate.  At least I can sing and put together the Millenium Falcon that my mom bought me.  My other single mom nerd friend just texted me to ask if I had worked on the ship today.  Omg, life is so good...

Friday, May 10, 2013

Fail Mix*

What like, 90% nuts?


Can I get a witness from all the death by food-allergy moms out there?  That once you go through the range of emotions from shock and fear and disbelief,  livid is what you are left with when you find out that the teacher who's had your kid for two years in class actually handed out nuts to everyone for snack?  Never mind that there's a lot going on because it's the end of the year, or that she's a new mom.  I don't know how to stress the importance of Emily not dying in school, or even the importance of Emily not needing to be stabbed through her jeans with a giant needle and sent to the hospital.  That's unprofessional just for starters.

But seriously, what the hell?  If nothing else it helped us establish a new rule.  If Emily is ever in a classroom where nuts are handed out to everyone again, she is to run to the office without stopping and refuse to return until everyone washes their hands and the desks are wiped down.  It's not a nut free school, it's not a nut free world!  But in the cafeteria she sits at the "No Nuts" table by choice.  I wouldn't mind if she just made sure not to sit next to people eating PB&Js.  However, surrounded in the classroom, there is no escape!  At Whole Foods if we spend too much time in the bulk bin aisle her eyes start to get red and irritated, and the last time she got a gob of peanut butter on her skin she got hives all the way around it.  People die every year from nut allergies and it's usually from being careless.  It's usually completely preventable.  One of my goals in life is to make absolutely sure that we don't end up in the news as one of those.  I guess that's why some people think we're crazy, why we're labeled as "those parents": Food allergy parents, obsessive, forced into the outer rim of social eating, prone to shaking and tears when the kids react and when they have near misses and don't react because you remember all too clearly when they did.

My least favorite part of this whole situation is that some coward parent talked to the the teacher instead of me after I emailed a gentle reminder to all the parents to not send nuts or nut products to school for snack, (old class policy) and also asked for a heads up when parents send surprise birthday treats for their kids who are apparently more special than the rest of ours.  (I didn't phrase it like that of course.)  We celebrate class birthdays once a month and I always send Emily her own treats so she's not left out.  But some jerk parent always shows up on unapproved days with cupcakes processed near nuts and Emily is always left out and we deal, but it would be nice to know, you know?  This is first grade and they're 6 and it would be nice to hold on to some of the wonder of childhood.  But whatever, now the teacher is miffed because I said ANYTHING in defense of my daughter and she got talked to by some coward parent, God forbid.  It would have been fab if she had not handed out death allergens, is all I'm saying.

Ugh, breathe right?  Thank God Emily didn't have a reaction.  Thank God we have a plan for next time, and there will be a next time.  Thank God I will learn to get a tougher skin and wear my crazy-nut-allergy-parent hat, because this is the world we live in.  It's probably better than the crazy-cat-lady-house-coat anyway...


*Title by my Mom

Thursday, May 9, 2013


So they're not completely organic.  Although you can get organic gelatin I've yet to order it, and the sprinkles aren't organic.  Haven't figured that one out yet. (haven't really thought about it)  But every thing else is: Sugar, Powdered Sugar, Maple Syrup, Chocolate, Coconut oil, and beside Gelatin the only other ingredient is Sea Salt, which is not classified as organic vs inorganic in this country.

But first things first; Since these are mostly sugar, what kind of sugar you use is of utmost importance.  Conventional white granulated sugar is pesticidal, and way processed.  Corn syrup is the same, plus it drives Sasha batty, makes her scratch her skin off and her hair fall out.  What I've been using is an organic, certified zero carbon, grown-in-America and lesser processed sugar.  I stock up when it's on sale, and you can way taste the difference.  Mmmm.  I vote you try different sugar options, and let me know how they turn out. (:

The recipe I started out with is from this website.   http://www.food.com/recipe/homemade-marshmallows-no-corn-syrup-384069   But then I had to do stuff to it.  For instance, instead of using vanilla extract which has corn in it, I use organic maple syrup which just has tree sap in it, and maybe really really boiled bug parts or something.  Ok, and when the recipe says to dust the pan with powdered sugar, first I have to make powdered sugar in my blender out of the regular organic sugar I'm using.  (because store-bought powdered sugar has, say it with me, corn in it) Then I smear organic coconut oil in the 10X10 pan I use, but as thinly as possible.  Then I put a bunch of powdered sugar in the pan, or toasted shredded coconut if I'm using that, or both.  Because otherwise the mallows have no interest in coming out of the pan once cooled.  
     These marshmallows are for the birthday celebration for all the kids who have summer birthdays in Emily's class.  Since Em can have chocolate and not everyone probably likes carob, I decided to make not everyone hate me and go ahead and dip them in chocolate, which was harder than you might think because these marshmallows are softer and melty-er than the conventional crap that comes in a bag and has corn 4 ways.  So first I stuck the cooled, extracted, chopped up, and coated with more powdered sugar marshmallows in the freezer.  Then I made a double boiler by putting a medium mixing bowl inside a pot of boiling water, maybe a little less than half full of water.  Inside this double boiler I added some organic coconut oil to organic corn-free chocolate chips.  The whole foods brand happens to be corn-free, and I read somewhere that the ratio of chips to oil should be 4 to 1.  I just eyeballed it.  (Again, you can taste the difference between organic chocolate vs inorganic.) A little stir with my trusty spatula put me in business!  The business was tricky 'though, since some of the corners did want to melt occasionally.  Some marshmallow dipping websites and images said to use a fork or toothpick for dipping, but I just used my hands, and kind of flung the excess chocolate off into the bowl quickly.  Then I had two landing pads coated with wax paper that I was rotating in and out of the freezer to keep them cool.  That worked pretty well except that it made the chocolate too firm as in, did not promote the sprinkles to stick.  However that was easily solved at the end of the whole process with a paintbrush and the leftover melted chocolate.  (If you sprinkle too soon, they just disappear into the warm chocolate.)

 The dumb part in all this is that chocolate, like wheat, makes my neck itch.  I know right?!  Stupidville.  So I won't really be enjoying these.  And caffeine triggers migraines for me so I won't be making caffeinated chocolate-dipped, coffee-flavored marshmallows either but how good does that sound?!??  Ughghgh...I guess I'm a little bit excited about the blueberry option I'm pretty sure I can pull off, or even another batch of my decaf coffee-coconut marshmallows which have been my favorite so far, or even some honey lemon now that I think about it.  I never thought I'd be making organic homemade, hand dipped marshmallows.  It's probably time to order organic gelatin, or maybe experiment with chia seeds and go straight vegan!  Funny the places life takes you.  #sashilyskitchen

Here's the Marshmallow recipe with my tweaks:

2 tablespoons gelatin (2 envelopes Knox)
8 tablespoons cold water
2 cups organic sugar
1/2 cup  water
1/4 teaspoon sea salt
2 teaspoons maple syrup
1 Oil and Dust an 9 or 10 inch square pan with powdered sugar and/or coconut. Set aside.
In a small bowl, soak gelatin in 8 tbsp cold water. Set aside.
Combine sugar and 1/2 cup of water in a large heavy saucepan.
Cook and stir over medium heat until dissolved.
Add gelatin, maple syrup and bring to a boil.
Remove from heat. Pour into a large mixing bowl and let stand until partially cool.
Add salt
Beat with an electric mixer until soft and double in volume. About 10-15 minutes.
Pour into prepared pan
10 Let cool, good luck extracting, chop up and coat with more powdered sugar etc.

Monday, April 22, 2013

Hair and Marmite

Her hair is thinning again, and we couldn't figure out why.  No new foods, toothpastes, skincare, etc.   It took a pair of outside eyes to figure it out, which is why, my friends, it's important to have outside eyes inside your life, painful and embarrassing 'though it may sometimes be.

Outside Eyes: "Isn't there corn in those vitamins?"
Me: "No, those are safe. I've read them."
Outside Eyes: "Are you sure?  There's no way those don't have corn in them."
Me: (suddenly terrified) "I'm sure I read them..."(reading them again)...(quietly whispering expletives)..."Mom, these have corn 4 different ways in them..."(can't look Outside Eyes IN the eyes)

It was an effing B2 vitamin that Emily takes to prevent migraines that has thankfully been working really well.  So when Sasha began been having unexplained stomach aches, I started giving them to her after a thorough checkup and a nod from her doctor.  I thought I read them, I read everything else I give her about 17 times and then twice more for good measure here and there.  But no one's perfect, especially when you get debilitating migraines I guess.  Damn.  Fail, bigtime.  And the shitty part is that they had been working, no more stomach aches, at all.  That is, until she was off them for a few days.  Then she had her first ready-to-puke migraine.  #omg  And of course we have to cut her hair all short and cute again because she's on the verge of another bald spot and has been acting unreasonably beside.  Throwing minor "corn fits" as we call them.

*twitch* Mainly I'm glad that Outside Eyes pointed out that I was slowly poisoning my daughter.  Of course, pick your poison: Have hair, or have abdominal migraines at 4 1/2?  Ugh, not gonna fly.  So I started researching comparable amounts of B2 in foods.  The best source of B2 in food is yeast extract, Marmite, what brits like to spread on toast.  Thankfully I can get it in town and Sasha likes it, although it still isn't the amount of B2 she would get in a vitamin pill.  Outside Eyes stepped in again and just found some straight B2 powder with no additives whatsoever, online for me to order.  It will be here tomorrow.  Hallelujah and shudder.

While I feel like an idiot, I feel like a rescued idiot.  It feels like we came perilously close to disaster, like we live on the edge of a blade.  But really all of life seems perilous or at the very least mind-blowing and amazing.  I am dumbstruck by the mechanisms that keep us alive in our bodies and in the molten center of the earth and in the atmosphere and in the spinning universe.  Who knows how long we'd have gone without noticing the corn in the vitamins, since I was so stuck in my belief that they were safe, and since they were in fact helping Sasha's tummy?  The universe spins tied securely together by gravity and dark energy, and we walk a blade tied securely by love and more love and thankfully sometimes that means other people pointing out my deficiencies and then filling them in.  I hope you have people like that.  I hope you let outside eyes inside your life.  I hope you speak to people like that, painful and embarrassing 'though it may be.  You could save a lot of stuff.  You could keep people from falling, and it's Divine, like the earth spinning.

Tuesday, April 9, 2013

Reese's Percocet

I don't know what happened.  We fiddled with meds, that didn't work, we quit fiddling with meds, I went two glorious weeks taking no pain meds at all, and then I got a sinus infection from satan himself.  Now anything from satan himself has to go through God as Job pointed out, but whatever.  12 days and counting of migraine pain later and all I'm wondering is when is my period going to start and I get another migraine or 3?  I mean, I had to refill medication I haven't had to refill since 2011.  I killed off the last of my C-section Percocet.  Jesus on my behalf even spoke to a friend of mine two states away to pray for the complete healing of me and my daughters.  THAT'S HARD CORE!!!

For certain, at least it was over the girls' spring break, and then my Mom's spring break the following week.  And at least the Giants started playing ball again.  All has not been lost.  I'm just upset because I hardly ever get sick and I've never had a sinus infection in my life and by all accounts this was not a bad one.  It was just accompanied by the worst and longest pressure migraine I've ever had.  In my entire life.  I missed so much life in those days and will miss so much more trying to play "catch up", if I even get to catch up before the next one catches me.  That's why I need the complete healing that my friend and I and many others are praying for.

Ugh, to be free.  It hurts to think about.  It's impossible to even dream about.  Right now it's just words I can say when I need it thick like a pole I can grab onto, like a beam I can hang my hammock on.  I need belief and dream and hope in me like a hammer, nails, and 2x4s you can build a house out of.  And we'll sit inside at the kitchen table and eat peanut butter and jelly sandwiches on wheat bread, on THIS earth, in THIS life time.  And after a few times I won't even cry about it because it will be normal.

Psalm 27:13-14 "Where would I be if I did not believe I would experience the Lord's favor in the land of the living? Wait on the Lord! Be strong and let your heart be confident. Rely on the Lord!"

Thursday, March 7, 2013

1 year of wingin it

In some ways it seems like it's been more than a year since...since...since we went down the rabbit hole and everything got all flippy; Since I mourned the loss of wheat and was too numb to mourn the loss of corn two weeks later.  I still go through the cycles of greif sometimes, mostly hitting anger over our nation's "food" supply and what we've done to it, especially on days like last Wednesday when Sasha had a headache and an earache and every single medication has corn in it.  But since we started reclaiming Sasha a year ago, I have hardly had occasion to even want to give her medication.  I on the other hand just saw my neuro and thankfully re-maxed-out on my preventative migraine med so that the next three months won't be a box of torture like the last three months.  You win some, you lose some.  But in this year crammed full of research and migraines and endless making of food and describing of symptoms, we have come a looooooooong long way.

Last year
For example, FINALLY we can make good bread!  It only took until two weeks ago.  (-: We can also make marshmallows in various flavors and colors.  I whip up guac pretty fast, and slowly but surely our safe food options are expanding.  There are even lots of cookie recipe options which is nice, and since the great wheat revelation came smack dab ON my Mom's birthday, it occurs to me I better get my amazing cake on. Gosh, I was feeding the girls sandwiches on organic wheat bread from Costco in the car on the way to my Mom's work on her birthday just last year; We were bringing her flowers and balloons.  When we got home the rash on Sasha's face flared up when I had my "Aha!" moment, and life hasn't at ALL been the same since.  Our kitchen is simpler, we have less food over all but we eat all of it.  There are even two places we can eat out, Chipotle and In-N-Out so long as we order carefully!

Although, I'm still stressed out about food daily it seems.  The price of an organic 3-pack of sunbutter went up from about 17 dollars to about 30 dollars overnight, no joke.  The inorganic kinds all have additives, one of which might be a corn product, I have to contact the company and find out the source of their Vitamin E. *sigh*  Sasha's reacted to Vitamin E before.  Sometimes it's derived from corn. Why?!! *shaking fist*  And of course we have to do sunbutter bc peanutbutter kills emily, and it has to be the gluten-free kind.  Plus who wants added sugar and crappy salt and pesticides anyfreakingway!!!!!  UGH!  Then on the way to school today, I had to hold my heart together while driving as Sasha said, "I can't wait to get to Heaven, so I can have a cheese tortilla!" After coming home and doing an hour of research to determine that I can't source the Teff flour for most GF tortilla recipes that is not processed near wheat, corn, nuts, or all three, I found a tortilla recipe that calls for chickpea flour, which I can make.  And everything else forbidden in the recipe I can substitute.  Hopefully.  I'm also willing to give raw, grass-fed cow-milk cheese a try and see how she does with it, since cutting out dairy has been no light-switch-cure-all anyway.  So we just might be in business.  Or we might fail.  But we're gonna try...

Me: "Look at me with your eyes!"
Sasha: "Like this?"
I need a drink.  I need to pray and meditate.  I need to do some yoga and take a shower.  Thank Jesus that I have friends and family who love the snot out of me.  This is our life, one year later.  So much love, so much rescue, so much heartache and hassle.  The phrase, "When you hear hoofbeats, think horses, not zebras." does not apply to us.  They are using tempura paint with corn starch in it on the kids today at Sasha's school for facepainting.  I had to send her with some of mine and my mom's makeup.  I went and bought a set of blue and sparkly eye shadows yesterday so she would have a blue palette to work with, since that probably just has less corn in it, and hopefully won't make her itch like we know the tempura paint does.  Later today I'll be making green food coloring out of safe green sugar crystals and water, since regular food coloring isn't safe.  When you hear hoofbeats, think flying orange zebra unicorns.  And in one more year, maybe we'll steer by our 7th dorsal wings over to some cheese tortillas for dinner...

P.S. Mom's Maple Carob birthday cake was off the HOOK!

Friday, February 15, 2013

Love and Darkness

"In case you've forgotten on this Valentine's Day, love is not about candy, cards, flowers, jewelry, sex, or feeling happy. Love is hard. Love doesn't happen without work, choice, and huge portions of forgiveness. Happy Valentine's Day...go LOVE your spouse, family, friend, co-worker. I LOVE you. 
'Love is patient, it is kind, it is not jealous,does not brag, and is not arrogant. It is not rude,it is not self-seeking,it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. Love bears all things, believes all things, hopes all things, and endures all things.' 1Corinthians 13:4-7"

My wise friend Julie posted that yesterday.  And oh my god, what a whammy.  I'm running out of attack-the-migraine meds, I've got a week and a half to go before I hit the neurologist again for more Botox, and probably at least 3 weeks after that before said botox kicks in.  And the unknown here is what we're going to do about the #epicfail of trying to reduce my every day migraine preventative meds.  I do not love my life.  I have recently laid in bed, writhing in pain, imagining different ways that I could die, or even my family and I could die together so that no one would have to take care of the girls with their heinous food allergies.  There, I said it.  Chronic illness is a total bitch man.  But let me tell you about life, love, and Valentine's Day.

When I get to the bottom and start imagining ways to die, I usually start telling God that something's gotta change and either he's going to save me or I'm going to end up addicted to drugs just for starters.  Luckily I've got some great friends and family, so when Valentine's Day was approaching and I got roped into providing two types of cookies for a certain preschool class, plus bread, juice, jam, and frosting just for Sasha, I was able to call for backup.  And 'though I did pay a friend of mine for a couple of days of baking, that money probably did not cover the 7AM freak-out-wake-up call he got on Valentine's day because I had a huge migraine and was on the don't-drive-while-on-these-meds, still needing help assembling everything.  We miraculously managed to get both girls to school on-friggin'-time, complete with cards and baked goods!  I don't know how to love this life, but sometimes it still loves on me.  

I don't have answers for all the ugly days I spend under a blanket in a dark room, where the meds don't touch the pain and nausea of a migraine.  But the girls and I haven't yet lacked for a blanket or a room.  When I'm too tired and sick to eat, food is still an option.  Knowing that doesn't always make it better, but if love is a choice, and if love is hard, and requires forgiveness, and hopes all things and endures all things, then maybe I can get my ass out of bed one more time.  I cannot forget that people love me, since that fact is made clear to me daily.  I can forgive myself for forgetting and try again to live, and possibly try to love life again.  I may even be able to forgive the people who expect me to be "normal" and do normal people things like go on playdates, have a "normal" job, take happy pictures etc.  My life is a disaster, I'm definitely single,  and that may have been the best Valentine's Day ever.

Friday, February 1, 2013

The Millenium Keyfalcon

I have 12 new pairs of socks that I'm never going to lose, and they all fit crappy.  Where do you buy socks that don't suck, where the elastic at the top isn't too squeezy?  Not at Target, that's for sure.  I bought 2 perfectly preferable pairs at Gap once, and I have a pair and half left, worn thin and ready to burst.  I even bought some different kinds at Target thinking surely they couldn't all be bad.  I'll be sending the 6-pack of squeezy athletic-y ones to my sister who has smaller feet than me, and is athletic-y. The longer ones that are just squeezy at the top (and are the exact same sock size as the other kind) I don't know what to do with.  What I do know is that I am back to square two, for at least I have a damn mesh bag to safely stow whatever future footwear I may manage to procure.  Ooooh, by the time I get this all figured out, Winter will be over, and socks will be on sale?  But Lord help me, I even bought a bunch of sock in China once, IN CHINA and they fit better than these!  AND I STILL HAVE A PAIR OF THOSE!!!

Needless to say, I may need to revisit this blog title.  This whole stupid sock thing is completely representative of my life, specifically of me trying to manage...everything really.  I keep trying to make things as normal and easy as possible, and it's just not possible.  Life is an atrocious hassle, I still hunt for any socks at all, and for food that doesn't hurt the kids, and for balance between migraine meds, and for energy to raise the kids well...But there are still socks on my feet, be they old, mismatched (or was it matched?), borrowed, or all three.  I definitely feel crazy, and as it turns out, nut particulate still occasionally makes it into my house.

There are times I regret claiming the free piano off the curb in front of a neighbor's house.  The jury's still out on whether it will ever stay in tune, it takes up a lot of space we don't really have, and I found a peanut shell in it the other day.  And if I didn't have it, I wonder if I would have invested in a keyboard, something with a volume switch, a headphone jack, and not prone to hiding death allergens. If the piano stays in tune it will earn its keep, for on the nights I crave wheat and chocolate (ie: all of them) I need only a handful of carob chips and the smell of a freshly tuned scale to help drag me out of the trenches.  11 months into a wheat and corn free life I still haven't figured out food, Sasha's stomach has started getting upset again even sans dairy, my socks STILL mock me, and it sure seems like life only gets harder every year.  But let them mock me who may, while I play the piano for a day, a week, a couple of months before it slips out of tune again.  I'll have a migraine by then anyway.

Then it will make one hell of a gorgeous bookcase.  And through a migraine daze I will stare at my pretty converted piano/bookcase in my old, borrowed, mismatched socks.  But today I played a tuned piano.  And it was awesome.

Monday, January 28, 2013

This Socks

I don't know why it makes me sad but it does.  I refused for so long to buy a mesh unmentionables bag to wash my socks in.  It's not that I mind wearing matched socks, It's just that since I was a kid, I have worn an awful lot of mismatched for the simple reason that it's a waste of time and energy to go about searching for all the missing socks just to find a matching pair, so long as you have two feet and two socks to put on them.  *sigh*  I swear the universe is trying to teach me some lesson.  It's reached epidemic proportions.  I've slid by for the past couple of years on weather and not needing to wear socks for too many months of the year.  (hail the central coast!) But for the past two years in a row almost all of my new socks have disappeared, it's been a cold winter, and all of my few remaining socks are worn out.  It's the perfect storm.  And as a result of this storm of sock drama, today I purchased the disavowed bag in which to wash my socks.  12 new pairs went in, 12 new pairs came out, and alas they are all matched and sitting in my sock drawer.  I feel like a little piece of me has not died, but kissed never never land goodbye.

I am way more confused that sad really.  I mean, I have a 6 1/2 and a 4 1/2 year old.  Granted, a lot of their socks spend time in the lost sock box, but most of them eventually come out of there!  And a lot of socks have made it through both kids before wearing out, and those are some tiny pieces of clothing!  Then there's my Mom who bypasses the problem entirely by having 700 pairs.  No joke, she's kind of bachelory in that she'll buy more rather than launder sometimes.  I have vowed several times to never again sort her socks but every so often I still do, since I pilfer her collection when I get desperate for footwear, which has happened increasingly of late.  Which led to an interesting dilemma at Target today.

I stood in the hosiery aisle at Target after having thoroughly secured my "Mommy" status by being there at 9:15AM and having a cart filled with clothespins, kid hangers, a mesh bag, and bananas, and contemplated my options.  There were long funky but cheap looking sock, ones I could see myself wearing and my mom not stealing, ones I could see myself wearing but my mom stealing, and just old boring ones like my mom would wear to work.  Funny thing about my Mom is that she thinks she doesn't steal my clothes, but she totally does.  But like I said, I "borrow" her socks so...anyway, I went with the ones I thought she would be least likely to steal, inadvertently or otherwise.  (advertently?)  But now to keep my feet warm, I can't just throw my sock willy nilly on the floor in the hallway with the rest of the laundry! What a dumb piece of grown-uppery! I was bullied into shaving my legs when I was 12, and plucking my eyebrows around 19.  Mesh bagging my socks in my 30s, what's next, watching Downton Abby?!  I just started watching 30 Rock!!!

Wednesday, January 9, 2013

Light Sabers Have No Dairy

I have an idea about letting go.  I'm so overwhelmed right now by 3 1/2 days of migraine that it's hard to even write about it.  Has it only been 3 1/2 days?  It feels closer to 2 weeks.  *moaaaaaan*  Anyway, I have all this old music I need to let go of, which I think means put on youtube when I get the energy.  Which means who knows when?  But instead of holding onto it because it's old and I think it sucks now or whatever, I just need to let go of it and let it encourage who it may.  (and also let people laugh at it, but it's all good)  It's not doing anyone any good cooped up in the recesses of my brains.  So, I have a goal.  But I also have an obstacle: Adjusting Meds.

Adjusting Meds=the devil.  I am depressed because there is no winner in the game of pick-which-med-I-get-to-be-on.  Which meds do I want to be on more of, the preventative kind or the attack-the-migraine kind?  One makes me lose weight and my hair fall out, and one has a slight risk of heart attack, and either way I'm exhausted!  Either I'm exhausted but slightly functional and don't have a full-blown migraine, or I'm exhausted, non-functional, and defeated because I have a full-blown migraine, and am on lesser amounts of preventative meds but more attack-the-migraine meds.  Or maybe it was just that I was travelling and then it was the "holidays".  The only way to find out is to wait a few more months and see it I survive.  Letting go...

Alright, good news.  Still no tummy aches or toilet weirdness for Sasha sans dairy.  $#*!.  I like dairy. At least dairy isn't in everything like wheat and corn.  Also my Mom is back from her travels so I am no longer alone with my little blessings AND the ants AND a migraine.  Things are looking up!  Also marshmallows have no dairy.  Music has no dairy.  Light Sabers have no dairy...

Thursday, January 3, 2013

Exact Change

                                                   December 14, 2012
If I were going to write now, it would surely be something about my life that is changing.  Changing, finally changing after so long caught in a rut grown crusty.  Everyone knows that change sucks right?  Well, not all change sucks of course, but all change is difficult on some level at least.  And if I could pick what changed, surely I would pick that my migraines would cease, immediately and forever, and that Emily’s migraines would cease immediately and forever.  Hah, but that is not what’s going on, although I don’t know how unfortunate that is exactly.  For sucky and painful and difficult ‘though change can be, infinitely greater can be the reward.  

I am out of the rut, and slammed into the learning curve.  It’s wicked steep I’m finding.  It’s kind of like when I was in that awful marriage, I didn’t have time to process how truly awful it was, I was just trying to plow through to survive.  Since extracting myself from that situation I’ve had to do a different although much better type of plowing through to survive.  The survival has been much healthier to be sure, but there’s been plenty of stress, and only now am I discovering what it’s done to me, how I’ve handled it.  And oh my...revelation is kind of flying at me!  I have trusted God with an awful lot, but I need to Not stop.  I have taken many steps of faith, but there are MANY more to be taken.  I have gotten incredibly run down in my walk with God.  Migraines, kid with migraines, schools vs. food allergies, maintaining a house, trying to maintain some sort of musical life, trying to maintain some sorts of friendships...oh right, ministry.  Love God and make him known.  Make disciples, pray your face off.  I remember these things now a little.

I’m on a plane, going to a reunion of a young adult group that I helped start and run for a couple of years, oh so long ago before I had kids, when I was first married and first discovered that said marriage was in deep shit.  Transparency and Accountability was our young adult group mantra.  Is this my restart?  Interestingly enough, we met at and because of a Christian radio station called the Lighthouse, and the building is in fact shaped like a lighthouse.  WECC, FM 89.3 (Jacksonville 92.9, Waycross 105.9) (http://www.thelighthousefm.org/) It’s been calling me back for many years, and finally I’m coming home to the Lighthouse, at Christmastime no less.  Bring. It. On.

                                                          January 3, 2013
I’ve been home for exactly 2 weeks, and I’ve been telling people that it feels like I was on a 3 week mission trip that got crammed into 5 or 6 days.  I’m not even sure how to go about processing everything that went on.  Perhaps more than anything I came away feeling encouraged and validated, having been able to encourage and hopefully validate the dozens of people I met and interacted with.  I spend so much of my time feeling defective and lame, fighting just to make one end of one day meet the beginning of the next.  And in Georgia (well, JAX) from the time the plane hit the ground to the time it took off again, I got to engage people I love and miss, and even some I just met for the first time, all because I used to be involved face first in ministry, because of the road I’ve walked, because God has never left.  And probably, because I am lame and defective.  I can’t forget that part.  And probably he’ll keep using me.  Hm...

There were consequences of course to my sad body.  I was on attack-the-migraine meds the whole time, culminating in don’t-drive-when-you’re-on-these meds by the last day.  *shrug*  What do you do?  That’s why I have them I suppose.  Apparently I am doing so well on the Botox that we’re starting to lower the amount of Topamax I’m on!  Just because I had a migraine for a month straight the last time we tried that, does not mean that’s going to happen this time!  I swear that’s not what that means.  I swear I'm not the slightest bit worried that that's what that means.  *__*

So snap back to today’s festivities, when Sasha’s right eye hurt from the light.  (Sasha, not Emily who already gets migraines.) Back it up, Sasha’s been having random tummy aches for a couple of few months or so-ish.  So Grandma and I decided to try dropping dairy for a while to see if it helps, even though the girls have already outgrown their milk allergies, and can already not eat 5 million other things between them.  It’s only been a few days, but no tummy aches since.  Of course, her eye hurts from the light today.  (...giant.......pause...) *twitch* #notmakingthisup  Oh right, God’s timing for my trip to Georgia was stupid obvious, I’m having a spiritual reawakening, and we have been provided for abundantly, nonstop, without fail, physically, emotionally, and spiritually.  I’m not giving up peace just because I don’t get the exact change that I want.

I will wait and wonder, about ministry, about my life, and about my children.  Heh. It’s kind of funny to be back on the rice milk, because each of the girls had a slightly different name for it when they were still in diapers. Memories.  (: Good thing we decided to drop dairy AFTER I started letting go of things, otherwise I would have really freaked out.  Wait a second, cows eat corn, even organic cows I bet!  Stupid Corn!!!  Once Sasha’s tummy’s clear for a while I was thinking of getting my rear in gear and going for the raw grass-fed cow milk.  Or maybe one of the other 17 options flying around in my head.  It really does seem like too much at times, but then another breath happens.  And look, one more.  And what was I saying about prayer and worship and people?

"I will wait for you, Jesus.  You're the sun in my horizon.  All my hope's in you, Jesus.  I can see you now arising."  Jason Upton