November in Nine

1. I'm playing more music!
2. I'm creatively bound
3. I'm not sleeping well

On the upside of all that is the fact that I'm playing more music, which a few months ago, I didn't know was even going to be possible.  Of course, nothing is easy.  It goes along with the constant state of rehab I'm in I suppose.  It's like, instead of surfacing from a long nasty migraine and realizing the shocking mess that has accumulated, I'm surfacing musically and realizing how depressed and detached I've become about it.  I've managed to worship through music because I can always worship but that's about it in over a year.  I prayed recently to play more music and Jesus was like, "You want more music?  You think you can handle more music?  Mua-ha-ha-hah...".  Music re-enters my life, and there are cobwebs in my arms, and my music-brain is sore.  It's weird as hell.  I can't even sit at a piano and play for fun.  If you had ever told me that sitting at a piano and playing for "fun" would be a stressful experience, I would have punched you and walked away.  So maybe I'm not sleeping well because I'm excited about playing music on top of the fact that time change is still kicking my butt on top of the fact that I'm surprised that getting back into music is going to be as much work as it's going to be.

4. I don't know anyone who has to eat like us
5. I dont know anyone who gets migraines like I do
6. I dread the Holidays

If I sound stressed, yeah.  You know, we do have a lot of fun around here.  The girls are HILARIOUS!  My Mom is unstoppably quick witted, and even the dog is silly.  But then, I do feel this need to keep the kids alive, which involves taking care of myself which involves trying to unravel the mystery of the migraines that won't die.  Also, 9 months ago when we started discovering Sasha's wheat and corn sensitivities, I expected that we'd be further along in the making of food than we are by now, being old-pro at food allergies and all.  I could cry this minute just thinking about the fact that corn permeates every gd food product in America, the government subsidizes it, Monsanto sprays pesticides on it, and Sasha reacts to it.  Vitamin E is an effing corn product.  Citric acid and Ascorbic acid are effing corn products.  And if I had more energy, I feel like it would go along way in our particularly afflicted family.  We just backed out of a road trip to see some family that we never see, because I need a nap every day to avoid more migraines than I already get, and because we'd have to feed the kids on the road for several days, and God forbid something happen to our food supply, and what the hell would we pack anyway?  So, that sucked...

7. My grace is plenty for you
8. (read: Let go you idiot)
9. (...shoot...)

I keep thinking that maybe since God saw fit to throw more music into my life, he would heal me at least a little, or fix the sleep funk I'm in or something.  But the answer I keep getting is that his grace is enough for me.  Noted.  I did have a bit of a revelation that I am holding on to an awful lot 'though.  I think it was the piano that clued me in.  But more than just whatever's holding me back from freely running my fingers over the keys like I used to, I feel like I have to hold on to so many other things when really, I don't.  I mean, I am the human being responsible for feeding my kids, but we eat!  Every single day since the great de-gluten of March and the great de-corn 2 weeks later, we have eaten!  God has provided food that doesn't kill or maim either of my children, and I need to let go of this feeling that we're going to run out of safe food.  While most food in America is in fact poison to one or both of my kids, there is still plenty to be had.  Boom, let go.  Trust, God.  And that extends to getting migraines and playing music as well.  There is still plenty of life and plenty of music to be had, even though I can in no ways envision it.  I'm pretty sure that Jesus Creator is perfectly aware of what's going on.

I'm not sure how letting go is going to play out on a day to day basis in my life, practically speaking.  I think being aware is a good place to start.  I think my prayers will be different.  Maybe I'll write a song about it, if I could just get my feet under me.  My life is just so weird and I feel so lost sometimes.  (let go you idiot?) (already forgot) Cleaning off the piano and getting it tuned is probably another good step to take.  Those cobwebs are helping no one.  Let go, shake it out, see the truth.

"Therefore I tell you, do not worry about your life, what you will eat or drink, or about your body, what you will wear.  Isn't there more to life than food and more to the body than clothing?...But above all pursue his kingdom and righteousness, and all these things will be given to you as well.  So then, do not worry about tomorrow, for tomorrow will worry about itself.  Today has enough trouble of its own."

The Mallow Project

It's not cocaine.  It's mostly organic, zero carbon, less refined than traditional, made-in-the-USA-sugar, coated in powdered sugar that I made in my blender from the same, along with a little gelatin, salt, and corn free vanilla.  It is my first attempt at home made marshmallows, and let me tell you, they are awesome!  They are softer and bouncier than store bought mallows, which now remind me of fake sugar mixed with plastic.  These taste like marshmallows, only real, awakened, and with a purpose.  Their purpose was originally Sunday School, although I have been wanting to make them for a while since getting a hankering for roasted marshmallows.  And since I've got my baking face on for the school Fall Fest this weekend, I figured I'd give them a go.  So to possibly disagree with all my apparent crack heads friends out there, I'm going to have to agree with my other friend and say that they look like tofu. ;)  But I've never put tofu on a fork and tried to roast it over my stove before...

Since these are fluffier than store bought evil corn-laden mallows, after it roasted beautifully, it fell apart like a politician under scrutiny.  But then it tasted amazing.  So I guess if I ever wanted to make graham crackers and buy some fair-trade chocolate, we could do s'mores.  But really just scraping the mallow drippings out of the bowl was fine for me.  And to answer another home made marshmallow inquiry, they do in fact float in hot chocolate!  It was like a small island of joy floating in sea of delight.

By far the hardest part was cutting and extracting the little guys from the pan.  I've got some ideas to try for next time, but there was something kind of zen-like about the process since I was kind of mindlessly doing it while watching TV.  'Cause we've been without marshmallows for like, 8 months, and it's just about marshmallow season, and that's not gonna' fly.  We lost nuts for the holidays years ago, and this is going to be our first year without candy.  But we will have marshmallows.  Oh yes, we will have marshmallows.  We can do toasted coconut mallows, carob, chocolate, and sprinkle marshmallows.  And our marshmallows will kick your marshmallows cheap, pesticidal butts.  Unless of course you want to go camping.  Then our marshmallows will cry big fluffy organic flaming tears right into the fire! :)
Here is the recipe I used. http://www.food.com/recipe/homemade-marshmallows-no-corn-syrup-384069

My WTH Burrito

Sit around with friends, play music, and laugh.  That pretty much happened last night now that I think about it.  It was really fun.  It was a rehearsal for the church band, or at least this week's band since we have such a pile of musicians that there is a different rotation every week.  And since the regular leader isn't going to be there, it worked out that 5 of the people on the rotation this week are or have been worship leaders, so we all knew our stuff or at least worked it out pretty quickly.  Good, times.  Plus, I got some time with another tired Momma friend on the team before and after rehearsal which was double bonus.  And the nose bleed I sang myself during rehearsal was very very minor.  That's what I get for being out of practice.  Standing and breathing huge amounts will apparently do that to you if you've been a couch pillow for a couple of months.  Probably the fact that I was still recovering from Sunday's huge choir-lights migraine didn't help.  I haven't told the worship leader yet that I am quitting choir eternally, but I don't think he'll mind.  I don't think I care.  Bright lights suck, they trigger migraines.  Not sure how that's going to work being a stage musician.  WTH?

I feel like that's my mantra lately, WTH?  It's a combination of protest mixed with carrying on mixed with genuine confusion wrapped in sarcasm topped with a small dollop of acceptance, eaten every day with a scream/grunt of frustration.  My WTH burrito.  Luckily WTH is gluten free, so...at least that.  I don't know what the solution is to my constant stress and frustration lately, maybe to stop screaming when I eat?  September was...cinderblocks.  Not just hard but concrete and terrible, grotesque in a world that should be green and fluid.  So when October came there was no motivation, there was almost no recovery.  Only now past the middle of October am I thinking of recovering, reclaiming what life I had before and in August, amazing and beautiful.  Only now since the two serious migraine days this month that came during hormone week, after the devil choir-lights fiasco am I trying to place life back into the categories: With Migraine, and Without Migraine vs: Just Always Migrainey.  WTH?  It seems too much work, gaining so much beautiful ground only to have it destroyed by a lumpy greasy cinderblock or 5.  *sigh*  But slowly it grows, the hope.  I have nothing better to do with my time anyway but slowly regrow the green and the hope that still hasn't gone back in the closet, even 'though it's nearly cluttered off the nightstand by flecks and chips of cinderblock dust and papers from the kids' schools telling me about all the things I'm not participating in.  Speaking of hope, let's talk about boys.

I have been forced to talk about boys a lot lately, through no fault of my own.  I've been threatened a blind date, and people have been asking about the girls' dad.  Again, WTH?  Stupid boys...one boy I know has a friend who won't come and see him from out of town unless one boy gets him a blind date.  So one boy tries to set me up on a blind date with his friend from out of town.  Are you kidding me?!?  I'm not opposed to meeting boys.  I am opposed to going on blind dates with boys with such stipulations, call it whatever you want.  And to be stupid honest, I have hope for my life in general that it won't always completely suck; I don't have much hope that I won't always be single.  It wavers between absolutely no hope and almost no hope.  It was a long shot to begin with, me being weird and independent, a tomboy, a leader, stubborn among other things.  Then I chose an admitted complete failure (hindsight) who could not/would not keep up his end of the whole marriage bargain and after giving it my all Anyway until I had beyond nothing left and he was endangering the kids with his carelessness and feeding them things they were allergic to over and over (and over), I took them and left.  I should have left so much sooner.

But seriously, how do you hope to start a new relationship when you have to eat like a cult leader, nap like a diaper baby, and have zero energy just for starters?  It is laughable.  I laugh at the notion.  I must laugh at it and scorn it and walk all over it because to do anything else is ridiculous.  Worthy of ridicule.  But this is fine with me and not a WTH, because I don't need the drama, as much as I would love for my girls to have a Father who is present and worth his salt.  For as much as I have always found it easier to relate to boys than girls and have always had a lot of boy friends, I seem to pick real losers past the friend stage.  I guess that's a little bit WTH?  But unlike losing the wheat from our diet, this is not something I mourn.  Perhaps I trust God more with our long-term well being than our day-to-day suffering.  Hm.  So um, anyway...I finally got the action lowered on my new guitar, Heath Rogers.  I also put some new strings on him, and omg, does he sound pretty now without murdering my fingers!  So there is a boy in my life I can deal with.  I happen to be playing him next week in the church band too, possibly with sunglasses on, we'll see if I survive this week without a migraine and a nosebleed.  Because WTH?!?

These shoes were made for laughing

My Dad was very nearly buried in his clown shoes.  Well, his whole outfit top to bottom honestly.  I'm kind of glad he decided against it, if only so that we get to see and touch his old clown things, his wig, his hat, his shoes.  I remember discussing the matter with him as he lay, the second bout with stomach cancer escorting him home to Jesus sooner than we would like.  He had a nice grey suit that he had worn to his Father's funeral, so he figured he might as well wear it to his own and get some good use out of it.  Plus, he said he came from a generation that kind of expected, you know, more gravity at a funeral.  (hehehe) I imagine that no one who knew my Dad would have been surprised had he actually worn his clown outfit in that casket.  But you know, the clown shoes never truly come off.  Before he went, I asked if we could do the hokey-pokey around his grave.  "I hope you do." was his exact answer.

I remember buying my clown shoes, the first pair that were actually mine and not just communal gigantic converse that anyone in the family could wear for a gig.  Every so often we'd head to Big 5 and see what was on sale, you know usually the really big pairs which was great for us.  And there they were, purple size thirteens.  I don't recall if I tried them on in the store or not, but I do recall putting my kid-sized sneakers inside them and wearing them that way for a couple years.  Then when my shoes would no longer fit inside, I just wore them on my feet which was nice since smart ass kids who were so inclined could no longer point out that my regular shoes were just just shoved inside.  Haters at clown parties are such a drag.

I haven't clowned professionally in over a decade, and in all those years I never stopped to consider how those giant purple sneakers have influenced my shoe choices ever since my clown days, until last night.  I was asked to bring my old clown shoes to my Mothers Of Preschoolers meeting just for fun, and as I was leaving the house and went to put my current shoes on, I noticed how they had an eerily similar silhouette, and were very nearly the same color purple, only of course my current shoes actually fit.  And come to think, I've had a pair of purple sneakers in-between that I had been given grief for for being out of style.  But I didn't care.  They had pockets on the sides, and were awesome.  But realizing last night that my current shoes just about match my old clown shoes explains so much...

Makeup, hair, clothes, all influenced by my long and early work as a professional clown.  Dad taught me how to do my make up before a gig.  I could go from human face to clown face in 20 minutes flat.  Nowadays I only give myself 5 minutes for make up when I'm on stage on a Sunday, because shoot, I'm not even doing white face!  It's not like my Mom didn't wear regular make up, she does.  I just don't remember really playing with it.  Maybe make up was too sacred.  And my Dad's sense of style was pretty crazy, even when he wasn't getting paid.  Like the time he showed up for my high school senior concert in the pink polo shirt from my Aunt that my Mom wouldn't even wear.  But then, I harass my Mom for dressing like a frumpy teacher, while I wear the same t-shirts and jeans like a uniform, so really we're all lost in the fashion world.  It's not like Mom and I don't try to look presentable, we get our hair done, we look at what the mannequins wear, but I swear it's to little avail.   We don't wear wigs or anything, but as a clown I gave up wearing wigs for hats, and that trend has certainly continued.  I have occasionally been accused of having my own "style", but it's ok, I know the truth.  The clown shoes never came off.

Tell you what 'though, it's kind of like being a court jester.  I get to say an awful lot of what I think, what a lot of other people would like to say but don't for one reason or another.  Being a clown has many advantages.  And making people laugh has always been a great hobby of mine, long before I ever got paid to do it, and long since.  And with all this food allergy/migraine mess, you can cry or laugh and don't you know I do both.  I call it balance.  It may be the only balance in my life, but at least I can both laugh AND cry about it!  And if laughter is truly the best medicine, maybe last night was a good time to notice that the clown shoes are still on.  "No foolish, no fun." said my Great-Grandfather to my Great-Grandmother.
#dorkrunsdeep

Counting Hope

It's not worth counting days anymore.  I'm just in it for survival.  The kids did not make it to school today.  They got their vitamin D from dairy instead of the sun.  Emily is becoming a champ at swallowing her vitamin B2 pills, in hopes they will help prevent her from getting so many migraines, but I have my doubts.  I highly doubt that we are deficient in Riboflaven considering our diet.  But we are grasping at straws, considering the September we've had.  And it's not over, nor showing signs of slowing.

The airshow is practicing over my house lately.  We live near the small city airport where small airplanes usually fly.  But once a year, loud jets soar and tumble in and out of impressive formation, leaving lines and shapes and one hell of a racket in the sky.  At nap time.  Due to the toilet fiasco one day and air show practice plus minimum day pickup from school the next, I had two blown nap times in a row. EPIC F***ING FAIL.  Today since no one made it to school save my Mom who teaches, I managed a great nap with the aid of some earplugs, and the fact that moving hasn't been a great priority of mine since maxing out on triptans by 6:50AM.  Actually, moving has been pretty taboo since about 6 last night, when I realized the magnitude of trouble I was in.

Suck it up or get back on the med I just quit.  Wait and see how well things go when the botox kicks in in t-minus-ohmygod-11 more days.  When I can't stare hard at hope, it stares at me with small but stirring excitement.  I can't put it back in the closet, it won't fit anymore.  It's not so small and dry as it used to be.  Jerk.  Hope doesn't tell me anything about the future, about when or how.  It doesn't make it easier to buy food and calculate risk.  But it does sit there brightly, and make me give a damn.  It makes me believe.  I hope for better.

Hopetember Anyway

What last month did for me was pull hope out of the closet and at least put it on the nightstand.  It's not like I wear it around my neck or anything, but I see it.  I remember it.  And I don't have to look far for reminders of undeniable progress.  In my box of meds right now is the most eletriptan hydrobromide I've ever possessed in my life.  That stuff is platinum in this house because it's a triptan that attacks migraines.  I used to ration it like water in the desert from one month to the next just for survival's sake.  I just took half a pill, and am hoping it will take care of the little knocker I've got going on right now.  Today's less-than-pleasantries could not be avoided thanks to the fact that we live in a house with one bathroom.

Every so often I get to test the hypothesis that I get a migraine when I skip taking a daily nap.  Yep, still true.  I'm not sure what happened, we all pretty much eat the same thing all the dang time, but for whatever reason our plunger failed us today.  And I'm talking, for all the years I've been alive and plunging toilets, I've never failed.  What the September man?  I'm pretty sure I'm going to be sore tomorrow for my efforts there.  Regardless of my failed efforts, I had a plan.  A plan that would still allow for naps.  A plan that would have worked but for the innards of a certain 4 year old cretan.

I left the house, plunger still in commode, to nab the wee child from school.  We evacuated innards at school.  So naturally almost as soon we got home, Sasha had to "go".  And I don't mean polite numero uno either.  Shoot, if that were the case I could have tossed her outside where Indie goes!  So with lunch still on the table I made her grab her shoes and whisked her off to the Starbucks by Home Depot, where, of course she did NOTHING, but I at least got a latte instead of a nap.  Home Depot made me the proud owner of a toilet snake and boom!, problem solved, clog be damned right along with nap time.  And come the evening, the small pain in my head grows and makes my stomach upset.  At least Emily was migraine-free today, praise the Lord.  And of course, we have a place to...read the paper.

I will look at hope before I go to bed, and pray the half-triptan kicks in by morning.  A whole triptan would make me a zombie by morning, and the kids would be late for school.  Then I would eventually feel so good that I'd end up overdoing it and feel worse in the long run and probably have to take MORE meds.  This is life, with no vice for rescue, in various stages of discomfort, pain and tortue, with the occasional August to remind me to pull hope out of the closet and look at it once in a while.  And in looking hard at hope I remember that we will get through this but to what I wonder?  Perhaps looking at it hard with a steely, often cynical gaze does not intimidate it.  It creeps into my soul just the same.

In more exciting news, my baseball team is rocking September, and also I'm thinking of writing a book.  About migraines.

30 days hath Sucktember

It would be easier to not write sometimes.  Well, nicer to NOT see the numbers all written down together in the same place at least.  At least on my phone the migraine journals are two pages apart, mine and Emily's, and it takes three pushes and two swipes to see all the migraines days that each of us has had in september so far.  September so far, so far to go...seventeen days in and I've had seven and she's had five, FIVE and that makes twelve between us.  But I've just had botox and we've both had colds and the weather's been migraine weather.  Mean.  Mean and uncalled for.  Sucky September.  Stupid September.  School Started, Pestilence Spread, Sky's Clouded September.

But, the botox will soon kick in.  And hopefully our bodies will recall our geographical location and realize that the artichokes adore the fog and the drizzle and get with the effing program.  It could be so much worse, we could live in morbid heat and humidity.  And if I'm going to be toast anyway and cough my head off (which of course triggers migraines) at least I got to play music yesterday, and maintain some callouses in the the ole' guitar fingers.  I didn't get to work on my 12 string like I wanted to, and had to play my old 6 string since my new 6 string needs the action lowered, but hey, no complaints here.  It's really really good to have something to do beside kids and food and ignoring the house.  I suppose not everyone walks around with a pack of 12 guitar strings in their purse.  But I kind of wish more women did.

There's a shortage of women guitar players.  I had one friend in Georgia who plays, and I have one friend here who plays a little.  I have some little cousins who play, and Em is learning the ukeulele.  There was one lady at church who played beside me, but she injured her wrist and is out for the foreseeable future.  I think that's it for female guitar players in my area code that I know, two of them aren't even in my area code anymore, and one is a 6-yr old learning the uke.  Why do women sing, play piano and violin, but not the guitar?  Violin is harder overall to play well, although guitar hurts your fingers more at first and is harder to push down on the strings, but then you can accompany yourself.  Taylor Swift plays guitar, Bonnie Raitt plays guitar, why don't more women play guitar?  Carol King plays piano...Hmm...

Music is good like laughing.  Probably the best prescription for me right now would be to sit around with some good friends, laugh, and play music.  The lovely intangibles.  You can record both laughter and music, but you can't bottle it to pour it on yourself.  It has to happen.  You can't purchase community.  Even with enough plane tickets,  you can't buy the day in and day out of your lovely friends from afar.  September may still be Salvageable.  The numbers would suggest that the last half of the month COULD NOT POSSIBLY be as bad as the first half.  And I have some lovely friends here I may yet get to spend time with, if not rock out with. (pardon my prepositions) Awesome August, Salvage September.  Ready, go.

Dog Fart Rehab

Our water smells like dog farts tonight.  It smelled like dog farts last night too, but I thought that was just because the dog was exceptionally farty, and I was having trouble shaking it.  My Mom says that the fields smelled like dog poop on her way to work yesterday, so who knows?  More like who wants to know.  Poop salad capital of the world.  It doesn't help that the dog is brown, poor kid.  I don't fault her for being farty, it was us who let her lick the leftover bean juice off the plates.  But who likes washing their hands in dog-fart-water?

At least it's only at night, and honestly it's better than when the water smelled like dead cat at night And in the morning.  We kind of have crappy water.  A Brita filter doesn't take care of it either, it has to be a Pur filter.  Once years ago when we were still using a Brita my Mom didn't think I could tell the difference between filtered water and unfiltered, so she filled up the jug with UN-filtered water.  When I came home from school thirsty, filled up a glass and took a nice big drink, I practically spit all over the kitchen before exclaiming, "What did you do, fill the jug with sink water?!?"  My Mom was surprised and delighted and replied through her laughter, "I didn't think you could tell!"  I hear the Espinozas have a mean streak, but I swear I get it from both sides.

Emily gets it from the cosmos by osmosis or something.  Not that she doesn't get stubborn and willful from every side plus the dog or anything, but being that she's really smart too, just makes it worse.  And boy, is she going through a spell.  School has improved greatly, but the primary caregiver gets to see the worst of the worst, and it doesn't help when the primary caregiver is having a minor botox meltdown.  Hehe, it's not as bad as it sounds 'though.

I overdid things last weekend for Sasha's birthday party, hoping I'd be ok since my whole month of August was so amazing!  Well, apparently I'm not Superwoman just yet, nor am I Geniuswoman as I forgot that as it was the week Before botox, all the previous botox would be completely out of my system.  Yeahwhoops.  So not only did I have to take regular attack-the-migraine meds for a couple of days, I also had to take the don't-drive-when-you're-on-these migraine meds, which I haven't taken in a few months.  Then I was wiped for a few days after than, then I got botoxed on Thursday which usually triggers a migraine.  Now for the good news: Although my head did hurt some later that day and the next,  I didn't even have take Aspirin for it, I just yelled at the kids here and there!  Now for the bummer news: While crawling out of the pit that is my life after fighting several days of feeling migrainey and exhausted, I got overwhelmed by the perpetual clutter of the house and the responsibility of constantly having to make alternative safe food for my kids just to participate in society and about lost it in the kitchen.  I seriously wanted to pick up every dish in the sink and smash it.  Instead I hid in my room for a while.

Food still pisses me off.  This is only the beginning of the 7th month that we've been eating Wheat and Corn/Corn Product free, on top of already being Peanut and Tree Nut (et al) free.  AND, today I discovered that the new bag of powdered sugar I used in my last batch of frosting has cornstarch in it, vs the previous bag which had tapioca starch.  I blame Mom who bought it, but also myself for not reading it before I used it.  (Different brand, stupid mistake) But, Sasha didn't die.  Clearly, she can tolerate small amounts of cornstarch vs cornmeal.  But I still get mad that nothing and I mean not a damn freaking thing is easy.  The soap company owes me a gallon of castille soap and is dragging their feet since THEY sent me the wrong product in the first place, one company that sells nut and gluten free products no longer has free shipping on Amazon, and there's another damn food activity at Emily's school next week.  But the cookies I made for a birthday party today turned out well, and were 100% organic, so bonus.  Of course, Emily stopped getting migraines, Sasha's hair stopped falling out and she stopped getting hives and crying all the time and waking up with new scabs every morning, and for the first time any med of any kind is working for me and these are my trophies!  Shoot, any ONE of them would be worth it!  But sweet Jesus...

If you've ever been any kind of sick for a long time, you know that getting better is hard work.  That's why there are long-term care facilities,  rehab, and support groups.  Every time I get a migraine, life backs up and I have to do serious recon when I start to surface.  I need a migraine rehab support group to remind me that migraines screw with emotions, and just because I start caring about life again, does't mean I'll be able to magically handle everything at once.  I need a "single mom with heinous migraines with kids with opposing food allergies" support group to remind me to feed my kids and not kill them. I swear, this is all a part of getting better.  Amazing August, Slow Start September.  One thing I do know, no more beans for the dog.

I Cried (or 13 YEARS!**)

Another cake is in the oven, for lo, another birthday week is upon us!  As I ponder my relationship with flour of late, it occurs to me that 'though my relationship with cakery has changed over the past couple of years, I still love it.  I have a whole Facebook photo album dedicated to the cakes I used to make for friends on various occasions, cakes that would take hours of dying, rolling, cutting and shaping fondant to whatever design sat in my mind.  It was good times.  But all the underlying cake and icing came from boxes and and cans save one, which sucked.  And all contained mass amounts of refined, processed everything, chemicals included.  I knew that then, but it was special occasion stuff, not every day stuff.  And in the process of shaping cake for covering with fondant, a lot of it went in the trash.  But no big, it was cheap, and I baked a lot of it for starters.

Man, now I cringe just thinking of that last sentence.  Now everything I bake is a very big deal, none of it is cheap, and every crumb gets eaten, even the ones that hit the floor. (By a grateful two-year-old defective Retriever) Take for instance the cake that just went in.  It's 90% organic, and I made 3/4 of the flour that went into it.  I sat there with my blender and made it in small batches, it was messy, time consuming, and then I had to make a flour blend and then I had to measure the flour blend for a half cake for Sasha's school plus a whole cake for Sasha's little party, two days before I even THOUGHT about actually making any cake!  I have a personal and intimate relationship with flour, and am becoming more and more proud of the cakes I make now because they are becoming more the art I once enjoyed making so much.  Funny 'though even when I was making Ace of Cakes style cakes, I always thought it would be cool to make my own cakes from scratch.  Anyone else see a twisted sense of humor at work here?

I kind of just caught on to that one.  First I realize that all my mad skills at being an information junkie are being put to good use as a mom of two kids with opposing food allergies.  Hah, very funny God.  Now I catch on that my love of Cakery is up and running, REALLY running in ways that are much more beneficial than ever before, since everything is now Waaaaaaaaay from scratch, organic, and gluten free.  If Em can make it to two more days sans migraine, she will have gone all of August and most of July migraine-free, which is phenomenal.  And even more phenomenal than that believe it or not, is the mind blowingest statistic of all:  I went an entire hormone week without prescription meds, or heavy non-prescription meds.  That hasn't happened in 13 years.  13 YEARS!!!!!  Yes, it's just sinking in, and yes, I am crying right now.  I can hardly believe it.  For the first time in my life, something is starting to work.

It's not that I'd lost hope completely, it's just that to survive, I'd stuffed it in a trunk way out of sight so I wouldn't have to look at it or deal with it regularly.  When every day is more exhausting than the english language has sufficient words for, hoping that this new med or method will actually help in the long run just tears at your heart more every time you even look at it, and it fails.  But no matter, because Heaven awaits, and somehow you keep trucking on because the Lord provides.  But look, look at us.  My body has fewer meds in it because I'm one preventative med down from doing so well on Botox, fewer residual chemicals since we eat as much organic as we can get our hands on, and fewer meds from the best hormone week in 13 years.  Emily was getting 4 migraine days month, and then she stopped.  Her behavior and her school work has improved greatly, and she isn't even the one who was scratching her skin off from the wheat and corn! *shock*  *disbelief-except-I-know-it's-happening*  I still have to take a nap every day, (for now) but naps make you smart and beautiful.  Google it. (;

**Wait a second, I just had a birthday.  Make that 14 years.  Wow...

Frankencupcakery

The starting point for this Franken-ed recipe is one that my friggin' wonderful friend Elisabeth made me aware of, from elanaspantry.com for chocolate cupcakes, using coconut flour.  (which are great btw) Coconut flour is pretty much where the similarities end.  I have Frankened the crap out of it for various and sundry reasons, and I was pleasantly surprised by the awesomeness of it! But be ye warned of two things:
1. These look like chocolate.  They are not chocolate. Chocolate and cheap wheat tastes like America.  Banana and carob tastes like elsewhere.  Carob tastes more...exotic, and dusty.
2.  I eat weird food all day every day, so I think these are super amazingly great.  However, my friends who eat normal food just tried these and also approve them except for one little kid who doesn't like bananas.  If you don't like or are allergic to bananas, don't make these, or use something else beside banana.

I am excited, for they are:
Gluten Free
Egg Free
Corn Free
Nut Free
FrankenCupcakes!

For Banana Carob (Franken)Cupcakes
Makes 9 (I know, weird) and they fall in the middle after baking. Don't worry, fill it with icing. Mm.
Preheat oven to 375.
Line your muffin tin with stuff.  I just figured out how to make my own! (Because I was out, but ready to bake.  Whoops. I used parchment paper cut into circles, folded like fans, and then smashed into the tins.  Anyway...)

1/4 Cup Coconut Flour
1/4 Cup Carob Power
1/4 Teaspoon Sea Salt
1/2 Teaspoon Baking Soda
3/4 Cup Mashed Banana (which is more than one but less than two bananas. sorry.)
3 Teaspoons Ground Flaxmeal
1/4 Cup Oil (or Butter)
3 oz Honey (or 1/2 Cup if you prefer more sweet, I don't, so I use less.)

Mix the dry stuff together.  Mix the wet stuff together. Flaxmeal here is a wet stuff.  Mix the dry stuff thoroughly with the wet stuff.  It looks kind of like brownie batter at this point.  Scoop it into the muffin tins, you know the drill.  You'll probably have to get a spatula and really scrape the bowl clean to get the cups 2/3 full each.  My oven tends to bake quickly, so it only takes about 15 minutes, and I flip the pan around once in the middle so it bakes evenly.  If your oven doesn't suck, you may be able to skip the drama.  They're done when they smell good and a toothpick inserted comes out clean!

For Carob Buttercream Icing

1/2 Cup Butter (that's a stick of butter)
1/4 Cup Carob Powder
1/2 Cup Powdered Sugar (or to taste. I prefer less sweetness so, ya know...)
1 Tablespoon Milk (or Cream, as implied by ButterCREAM. I had Milk and it worked.)
Little Splash of Vanilla to taste (sorry, I didn't measure)

I put the butter straight from my fridge into my mixer and let her rip for a while, so softening the butter wasn't an issue.  If you don't have a mixer of some sort, definitely let the butter get soft first!  Then mix the crap out of everything.  After I made this and iced the cupcakes, I put the leftovers in the fridge because I knew I was going to have to make a second round of cupcakes because they were so good as to qualify as a new food group, and I thought there would be enough icing to go around since I ice kind of sparingly.  Well, after sitting in the fridge and getting re-mushed around, the icing kind of separated a little.  It still tasted amazing, it just looked a little less smooth.  Oh my gosh, writing about this is making me wish I had more right now but it's all gone...sad...

But there you have it!  A whole new food group.  (; And, it's easily made diary free if you just be sure to use oil instead of butter for the cupcakes, and omit the icing.  They're plenty good without the icing, so long as you like Banana.  And if you're allergic to banana, I dare you to try another fruit!  (Like apple, and then tell me how it worked!) The banana and flax act as an egg substitue, but I understand that other pureed fruits can work as well.  I used banana in combination with the flax since I was using coconut flour which has Absolutely no binding properties whatsoever.  So here's to successful Frankecupcaking!

Drinks by Tuesday

I went 19 days!  I've done that before, 19 days and no migraine.  But these 19 were different; productive, musical. [read:AWESOME] And this migraine is just an aspirin migraine so far.  Hehehe, ask me tomorrow after early rehearsal and two sets of worship music.  As for triggers, it could be the schedule change, the huge week we just had, the mass amounts of awesome, or the organic coconut flour carrot cake I baked today.  Of course, my money's on the fact that we're changing meds again, Plus the aforementioned.  We're fiddling with meds because I've been doing so well!  But oh, change...well, change means one less preventative med.  [less meds=good] Specifically the one that keeps me from alcohol (and grapefruit?) which means assuming I survive the weekend and the beginning of the school week, and I feel up to it, I could be having drinks by Tuesday!  I could have a grapefruit drink in like, 3 more days!! That doesn't sound good at all, but it's the principle of the matter.

So, Em's Neurologist is Jamaican, and pretty cool.  He took time to listen, learned Sasha's name and shook all of our hands upon entry and exit.  Since Em had fewer migraines in July and none so far in August, we're kind of in a wait and see phase.  Now that I keep a tighter reign on all our schedules, that seems to have done the trick.  It's funny, every doctor, and I know it's their job, brings up food.  So I tell them about what we eat.  And then I have to tell them over and over because no one believes what I tell them.  Don't they read about cults?!?  It's just like that, only for medical reasons!!!  We have the bracelets to prove it!  Only, a lot of people who have the medical reasons still don't take care of themselves obsessively like they should, and I've seen firsthand the consequences.  Also, people in actual cults are often secluded, because it's a hell of a lot easier than trying to function in the general public.  I guess I just explained to myself every doctor's disbelief.  *sigh* If everyone would just obsessively eat properly, it would make my life sooooo much easier...

My Neurologist believes me when I tell her about our food habits.  She's threatening to send her kids to my house to eat!  But we're only ahead of the game because my kids have had such bad reactions to food.  It's definitely a trade off.  Heck, if nitrates didn't make me feel like crap, we'd probably eat cheap bacon!  It's one of those ahead-of-the-game-at-a-terrible-price deals.  I gotta be honest 'though, halfway through making the cake today, I realized that it was organic and it was very cool.  I made an organic cake from scratch today, or as my grandmother would have said, "I made a cake today." :-/  Eggs, milk, coconut flour, spices, sugar, butter, carrots, all organic because that's what I have in my house!  And maybe that has anything to do with the reduction in (disappearance of?)Emily's migraines and me feeling better?  I read about a lady who cured her migraines by going completely organic, and I have nothing to lose but food that's been genetically modified to tolerate chemicals designed to kill living things that need water and oxygen to survive.  And cash.  But we don't eat out or go anywhere or do anything, so there you go.  And I think any adjustment we have to make financially to eliminate dangerous chemicals from our food and skin products, is worth it.  Did you all catch the fact that Johnson and Johnson is going to pull a whole list of "chemicals of concern" like Formaldehyde, from their products by 2015.  By 2015!!! It took Sasha's hair falling out for me to start making our own shampoo, and I'm pretty sure it was the gluten that did it but still.  Wake up call!

This is not the life I had planned 10 years ago, a day after turning 23.  But this is the world we've been given, the times we live in, the body in which my soul is housed.  I didn't even love the cake, truth be told.  But it's safe for my family, and they all loved it.  So I'm pretty sure I'll be making it again.  The frosting was pretty rad.  Maybe it'll go down easier with some coconut rum, on Tuesday...

Survival of the Persistent

Em survived the first day of school!  And I mean that literally.  More like, Em survived her first day in the cafeteria surrounded by kids eating PEANUT BUTTER SANDWICHES!!!  Actually, she sat at the end of the table next to a ham and cheese sandwich.  I mean next to a kid who was eating a ham and cheese sandwich.  Obsess much?  Geeze, days like today, I really envy the Moms who just get to bring their brand new first graders to school, take pictures, talk to the other parents, and then just go on their merry way.  I had to battle the doctor's office for the epi-pen release form.  Twice.  Twice because there was apparently a space-time vortex between the fax machine at the doctor's office and the  one at the school office, and just as well since on my third (THIRD) trip to the dr. office today to deal with them I discovered that the epi-pen release form was only halfway filled out.  Am I seriously the only patient of theirs who has a kid in school with food allergies?  This from the same doctor who forgot to refill Em's prescription for epi-pens, even 'though he said he would after I reminded him at our last appointment.  Twice.  TWICE!!!  UUGGHH!!!!!  And also a huge blue truck wanted my lane this morning on the way to school.  I had to swerve so he wouldn't hit us.  With my babies in the car.  And then the rat bastard honked at me.  I swear, some days are just like that.  But like I said, Em survived the first day of school, complete with road hazard and cafeteria experience.

I am selling cookie dough and magazines if anyone's interested.  None of that cookie dough is coming anywhere near my house, but you can buy it if you want.  It will probably kill you in the long run, I'm sure it all has wheat, corn AND nuts in it, and tastes amazing.  I can vouch for at least one of the magazines 'though, it's a science magazine that I get.  Ah, school.  Forget school, enough school, let's talk music!

I've been feeling really good lately!  Well, really good for me.  For instance, crazy morning run-around (school, dr. office, school, dr. office, pharmacy, dr. office, store, etc..) and after nap time I still managed to cook dinner which involved bacon.  Now, all this awesome is compounded by the fact that I have recently changed nap time to coincide with a new school schedule, as well as the fact that I got up early yesterday and led two services of worship music!  Oddly or perhaps not, it's been since I bought my very first guitar, the only guitar not given to me or that I've not inherited but that I've actually purchased.  My dream baby, my Lowden, aka Heath Rogers.  And I've not just been playing the Lowden, I've been paying attention to some of the other guitars in the house, and have actually been playing them (or having my friends who can Actually play, play them) outside the house! It's been wild, and hopefully just the beginning.  And just today, Emily switched quickly between 2 chords on the ukulele.  She was pleasantly surprised.  I was like, "See, practice DOES work!"  Oh, to see the little neurons firing and connecting...

So, be it Botox, diet, or Lowden, I'll take it.  However, my fingers are KILLING me like I don't ever remember them killing me before, not even when I first started learning to play the guitar.  #outofpractice #needloweraction #comicaltowatch

But seriously, it's freaky to go two weeks feeling worse than you have in months, and then to go the next two weeks feeling better than you have in months before that.  I don't know what that means.  I do know that I'm having a good stretch, and that has been a rare thing.  And now I have my dream guitar, which has somehow inspired me to do things I've never done with some of my existing instruments.  Crazy? Maybe, but not nuts.

Cake and WTF

Our first Nut, Corn, and Gluten free cake was killer good!  And I don't mean just passable, I mean the honest people in my life were universally pleased, and I actually craved it when all was said and done! Now granted, I haven't had cake in several months, so that may have had something to do with it...and it had a little bit of weird texture to it because of some of the home made flours in it, but I would proudly serve that cake again!  Plus it was decorated like Captain America's shield.  Hello.  One confection down, August and September to go...

So much for summer. Well, actually Mom and I have been making food.  We've made some good soups, Mom made cherry popovers and blueberry coconut flour muffins speaking of confections, and we have been doing an impressive amount of weeding through stuff on the inside of this house.  But ever hampered by migraines, it just feels I've accomplished virtually nothing.  I mean, I have done some laundry, but we've not made it to the beach even once, although my Mom Has made bread sans machine.  That woman is on FIYAAAAH!!  And of course she's been taking care of my kids for over a week because I got a cold during hormone week.  (read: DISASTER) (read: MOST MEDS I'VE TAKEN IN WEEKS)

I guess it was the perfect storm: Em's very small birthday playdate, we're talking ONE friend, plus a few cousins.  Hardly any decorations, no games, one cake.  That's all.  We had naps and everything! I totally took it easy.  But it was the beginning of the most wicked pre-hormonal migraine I've had in a long time.  Plus I started getting a cold. *shake my head* I do not know how these things happen.  Man plans and the universe says, "Just kidding lol ;)!".  That was a Friday, I got a migraine on Saturday, sang in church on Sunday, and curled up and died on Monday.  Felt better by the following Saturday, overdid it at Family Olympics yesterday at Church, and am back on the heavy meds.  WTF you may or may not ask?  If I ever try to act like I am a normal person who can do normal things, my body is quick, ruthless, and completely unforgiving.  I swear, between pre-hormones and post-hormones, plus a cold, plus singing, plus overdoing things when I start to feel better, plus a party to kick it all off, I just want to punch something.  And it makes me hate doing anything ever, while simultaneously becoming bitter that I can't do anything ever.  But my cake kicked ass.

And in other good news, Ritz crackers are so incredibly processed, that apparently Sasha can eat 2 1/2 of them and not die!  They have wheat in them and corn syrup as well, but she's been just over 24 hours since the girls were in Sunday school having so much fun that they forgot that Sasha isn't supposed to eat the snacks there, and we've seen no adverse effects.  Nothing like the last time she got corn meal, Hallelujah, nor the last time she got full on whole wheat.  Which makes me wonder, if a small quantity of highly processed modern wheat doesn't bother her, how well would she take ancient, un-crossbred, un-genetically modified wheat?  The Sunday school mistake may prove serendipitous.

A few things have become clear. 1) I do not pay my Mom enough.  Of course, I do keep her supplied in starbucks, plus rent, so...  2) Holyshit, school starts in 2 weeks, and I am devastated.  3) I'm pretty sure I'm never going to play music again.  But at least Emily is learning the Ukulele, entirely since I've had a migraine.  So if I ever stop having a migraine...

Pediatric Neurology

It sounds so imposing.  Emily is 5 and 11-and-a-half/12ths, and her GP's office is searching for a Pediatric Neurologist within reasonable driving distance who takes our insurance.  We may have to go to San Jose.  But her GP (General Practitioner aka: regular Dr.) was impressed with my note taking skills.  What I didn't tell him is that the reason I upgraded when I could to a new iphone is so I could have a migraine journal I could talk to, literally.  Now I have two migraine journals on the same phone that I can talk to, and it made Emily's Dr. appointment today go really quickly.  He said I should also keep track of what she eats.  Funny.  I then told him what she eats, so again, not my first rodeo.  Her being the 4th generation (we know of) in a line of females to get migraines does a lot by way of genetic research, and so far we don't seem to have food triggers. (Well, except possibly for nitrates and sulfites.)  We have schedule and stress and light and noise and weather triggers, you know, things less easily controlled.  Food, now that's easy.  By comparison anyway.

In one sense I'm rather proud that Em's going to be getting her first neurologist in the summer before 1st grade.  I didn't get my first neurologist worth her salt anyway until about a year and a half ago.  I wish I'd had a GP worth his salt when I started getting heinous migraines regularly in college.  The idiot I was seeing was no help whatsoever, and he eventually sent me to a neurologist who was also no help whatsoever.  They probably had some sort of a deal.  I hope we find someone worth having, although there isn't much you can do at this point unless I want to drug the kid up, an option I'm still not really into.  And since I am no longer in denial that Em is in fact getting abdominal migraines, we're managing them better and she hasn't had a severe one in a couple of months.  But school starts up again soon, and I am already upset about them interfering with school, which is probably the wrong attitude to have in general.  *sigh*  Effing migraines.

But back to food, we eat a good diet, and we keep striving for a better one.  We're also trying to get back to a better schedule since Sasha has taken to wetting the bed almost every night since summer began.  Also, Sasha appears to be manifesting the demons we haven't seen since she was eating wheat and corn, although her skin is still in perfect condition.  (I mean, the bald spot is still mostly bald, but it's slowly growing back in...) That girl's body has a way of telling us in no uncertain terms when trouble is a brewin'.  Lord help us all come puberty.

I read about a study recently concerning the human body and its schedules, and the stress incurred when one deviates even by an hour from say, lunch or other expected activities.  It suggested that you can really increase the stress in your life by Not keeping a routine, which had all kinds of negative physiological effects like increased blood pressure, etc.  Conversely, by keeping a good routine you could decrease stress.  I was like, no shit.  Sometimes I feel like science could learn a lot by observing my little family.  Screw with our schedule and Emily and I will get migraines, and Sasha manifests demons and wets the bed.  DESPITE the massive diet change.  Just to keep my family alive and functional, I not only had to change 98% of what we were eating, I also have to keep an extremely tight reign on our schedule.  And to prove it, very soon half of the human occupants of this house will have their very own neurologist, and will I really be surprised if that number jumps up to 75% of the human occupants in another couple of years?

So what do I do with this beside plow through and blog about it?  It would seem that life is affecting us, manifesting differently for each of us.  We still play and sing and eat, but we suffer too.  Doesn't everyone?  I guess most people eat wheat and corn, and don't have their own neurologist.  But on the scale of neurological disability, migraine isn't really so bad.  We steer by the 7th dorsal wing...

Truth is...

...it's never a routine kid-handoff when a set of epi-pens and the instructions, "Feed them ONLY the food I've given you to feed them and Absolutely nothing else or I'll kill you, and also no play-doh." is involved.

...it's beyond a major hassle (and I cannot over stress this) saying Yes to visits, but making clear, absolutely clear that I need a darkish room with a fan or other comparable noise and no screaming kids between the hours of 1:30 and 3, or I WILL get a migraine, fall asleep at dinner, and hate you.

 ... it's a really sad (stressful, shocking) unfortunate misunderstanding when I ask you not to bring your goddamned allergens into my house, my one safe zone, and somehow you misunderstand that and bring them anyway. Or you whine about not being able to bring them. Or you eat them RIGHT BEFORE walking in.


We might look like most people, but we're not like most people at all, so I can see why most people don't understand. But life is one long perpetual pain and hassle, and I'm beat, because even those closest to us don't understand, because they are not us. They don't live in our bodies, even if they occasionally eat our food. They don't have a migraine every single waking minute of their lives and call a "Flare Up" what the rest of the earth calls a "Migraine", a migraine that literally, never goes completely away, and if I ever treat my body as if it has, it flares up with a wicked vengeance, 100effing% of the time. 


If I don't advocate hard and loud for myself and for my kids, no one will.  Not that it's anyone else's job, but that's why I don't really want to go anywhere or do anything.  Because it's one giant battle for survival, at school, at the store, at the playground, and even occasionally in my own damn house. And unfortunately, it's not like I can say what I have to say calmly and politely for most people to understand.  I have to say it over and over (to some of the same people mind you) and they often STILL won't get it.  It's just too much work, too much misunderstanding, too many idiots, too little willingness to communicate or cooperate, and I'm too burnt, and the consequences are too real.  


Truth is, finding balance is the hardest part of all.  I have to run a house and raise my kids, but not overdo it and trigger more migraine flare ups than I'm already going to get just by living and breathing.  I have to do Gobs of research and make weird ass food, but not let it overwhelm me; I still have to enjoy feeding my family.  But the hardest balance of all to strike for me, is probably a result of the fact that I am a major people person.  I have to be gracious with the dense, yet advocate FIRMLY (Loudly and in your Facely) or we all get hurt from the wrong foods or an off schedule.  And I think it is a pity and a shame.  My Neurologist, has no such pity.  And I kind of love her for it.


Truth is..."But naps are so good for you!" She says as she smiles at me.  I tell her that it keeps us from going places and doing things like normal people and I kid you not, she looked at me blankly and kept smiling, as if that weren't actually important.  I griped that I had been feeling so good lately that I majorly overdid it by baking two different items in one day, and was rewarded with a three day migraine for my efforts, and she was happy for me that I was learning my limits!  She's so positive and happy with my progress, I mean, am I missing something?!? Is it Not a total shame that we're so bizarrely different from the rest of the world?!!!  (Er...the U.S. since most of the rest of the world takes an afternoon nap as our bodies suggest we do...pause for genuine question reflection...)  I'll tell you why for the first in my life, I don't like being so different, and it's not because of the hassle of researching and buying and making weird ass (expensive, hard to find) food, and it's not even because school could actually kill Emily some day; It's because it hurts.  


Being the only one able to fully stand up for myself and my kids hurts.  Being the only one willing and capable to explain over and over to people who don't get it, don't believe it, or don't care, hurts.  I don't mind explaining at all, I mind the disbelief, the scorn, and the numbskulls.  And some backup would be nice.  And some backup who looked like Captain America, well...just sayin'. (;

Having the kids in school kicked my butt.  Having them on Summer break is kicking my butt.  I'm seeing a disturbing pattern here.  We have one secret weapon left: Grandma Is Now On Summer Break Too.  Perhaps, PERHAPS with an extra hand around, I'll be able to contemplate what I suspect my Neurologist was trying to tell me.  And maybe I will find that balance between Advocate and "Yell-at-you-with-my-eyes" with "Give you the face-finger".  Funny the things you can still do on Botox.

And then it was Summer (o.O)

Yeah, totally weird.  I checked my calendar and suddenly all that was on it was small stuff.  Well, if you consider 27 injections of Bolulinum Toxin type A in my head and neck small stuff.  I consider that smaller than a field trip during nap time.  Ugh, now THAT'S a nightmare, especially if special food, epinephrine, and childcare is involved.  But no more!  For glorious summer is here, and this summer is totally new, the newest summer of all since I had a new baby named Emily almost 6 years ago.

Geeze, we could get up and go to Whole Foods in the morning and be back by nap time, any day of the week.  Instead of cramming everyone into the car by 7:55AM, I may be able to locate Teff Flour and attempt tortillas, education be damned!  What the crap is a Teff?!?  It's starting to become clear to me, the possibilities.  I WILL get massages more regularly.  Promise.  We may yet move past the 'just survival' phase of food and migraines.  And believe you me, I am counting the days until my Mom is on summer break.

I am such a dreamer.  I always dream so big, and tend not to be too crushed when most of what I dream of doesn't exactly happen, because I am perfectly aware of the fact that I dream huge.  I like anticipation, the maybe.  I like to wonder and imagine possibilities.  And since no one (important to me anyway) has ever been in the business of telling me that my ideas suck, they just keep coming.  So MAYBE this will be the breakout summer of food beyond weird and healthy.  MAYBE I'll figure out how to really work the internets and start a Nut, Gluten, and Corn-Free food blog.  MAYBE I'll figure out my &^$#%^* bread machine, and we will feast on safe bread.  MAYBE I'll get addicted to Pinterest.  Just kidding.  I keep trying, but my chromosomes are apparently defective somehow. ;) MAYBE the girls will take a dance class.  MAYBE I'll play some music.  (maybe the poor dog will get walked.)  At the very least, I'd like to go see the Avengers again.  You gotta start somewhere!

What we have learned

...is that no matter how extensively you plan or obsessively read ingredients, the system only works if the company accurately labels all the ingredients they actually used on a product.  In our case, this includes the cornmeal used to keep the the gluten free pizza from sticking to the pan.  Apparently no one thought that it counted as food.  Sasha's digestive tract agreed, and only after about 24 hours of a stomach ache and diarrhea did she really try eating again.  And didn't I feel amazing, since I was the one who extensively planned the pizza, obsessively read (and re-read, and re, re-read several more times) everything in every ingredient and watched the informational video and calculated the risk of the microscopic bits of gluten flying through the same oven used as the glutenous pizzas, and then wasn't home to catch the crumbly bits of corn meal on the friggin bottom of the lovely gluten and supposedly corn free crust, since I was out with a friend I hadn't seen in over 10 years.  But at least her skin didn't fall off, and her bald spot is still filling back in.  It could have been way worse.  However, Domino's is going to get informed of the importance of properly labeling ALL the effing food ingredients (mechanical or otherwise) from an upset 7-winged, flying orange zebra unicorn Mother.  Lord help them.  Lesson Learned: You seriously, can't trust anybody when you have food allergies.  And it's stressful as hell.

...is that Guar Gum is powerful stuff!  It turned some home made shampoo of mine into a semisolid gel, that I managed to re-liquify into hand soap.  I just guessed and dumped maybe half a teaspoon of guar gum into shampoo that I had made, thinking maybe you could substitute it straight across for xanthan gum (a corn product), trying to remember proportions I had read in a blog somewhere.  Turns out, I made pretty decent handsoap!  But boy did I have to strain the crap out of it.  I'm going to have to research how to use that stuff for things other than baking.  Lesson Learned: Sophomore high school chemistry (the last time I used guar gum) was longer ago than I thought.  Ouch.

...is that botox progress is maddeningly slow, frustratingly, infuriatingly slow.  But when I think back to last year, I am so much better off.  I still hate this feeling of just making it, having just enough energy to do what needs to be done and nothing else.  I watched Marvel's Avengers last weekend, (I got out of the house and watched a movie!!!) and one of the parts that sticks out to me the most is a scene with a string group in it.  There is this beautiful string music playing and the camera pans over a small ensamble of string players and my heart stopped for just a moment.  I am a string player.  I was a string teacher.  And for now music sits in my closet, waiting.  But slow though it is, botox progress is still progress.  So I wait...I pound out laundry and as much safe food as is reasonably possible and dishes and More laundry and sometimes I write so I can remember in what the hell order everything happened, and I dream and I pray and I wait some more.
Lesson Reaffirmed: Waiting sucks, but progress is good.

Nut Shells and Fish Bones

I felt good for a day.  Whole day, top to bottom.  It was a Monday.  I was hoping that maybe it was going to keep going, but I forgot that often, I'll feel good before I get a migraine.  It's not unheard of, a euphoric migraine aura.  It started for me in college, and don't I wish it happened every time?  Then I could at least get stuff done before I crash.  Monday was great, and Tuesday I felt like I had gotten hit by a train.  In hindsight, I think it was a result of the pent-up fury from the weekend.  We're talking a migraine, but more than that it felt like a fever as well, (even though I really didn't have one) complete with body aches.  I had made it 4 days in a row without taking pain meds, when the girls' dad came to visit.  Bad, news.

At least he plans ahead lately, vs just showing up unannounced on the doorstep from 7hrs away like he used to.  (not joking)  And when he doesn't keep his word to the kids, it's such a well established pattern, that they don't cry for long because my Mom and I have explained it so many times that they just have to appreciate they time they have with him, regardless of when it is. (or when he said it would be)  I am the adult, the parent, the planner, the care-taker, and God knows, the protector.  So when he plans ahead and *gasp* communicates AT ALL, we'll take it.  After all, I have to remind myself that it's his insurance I have.

However, and it's a pretty big however, that does not mean it's ok to let Emily, death-by-ANY-nut-Emily, who carries epi-pens on her at All Times, bring home a NUT SHELL from the playground because she thinks it's a sea shell.  He admitted that he didn't even look at it.  Bastard.

And when he wanted to make them fish for dinner and I approved all the ingredients and I'll give it to him for making a good effort there, the good effort became null and void when he handed the girls plates full of fish with tiny bones in them and gave them the go ahead to eat.  When I saw the bones that he again admitted that he didn't even bother checking for...well, you can imagine.  Actually, my Mom verifies that I handled both situations very well.  Very calmly.  I mean, everyone got an earful about the dangers of swallowing fish bones and getting them lodged in various parts of your body, etc., but nobody got punched in the face and/or genitals and/or thrown out of the house!

And as soon as I told Emily that what she had in fact brought home from the park was a pistachio shell, her eyes got wide, and she went and washed her hands, and we talked extensively about it.  Calmly.  And she had no reaction whatsoever, since the sand had apparently sufficiently scrubbed out the remaining nut proteins.  But I of course have greater issue here.  I feel like we completely unnecessarily, narrowly dodged disaster TWICE in one day, so our insurance provider could check on his investments.  And since then I've had anxiety dreams, and of course the hit-by-a-train/fever chills/migraine.  I don't need this.  And I want better for my girls.

The good, the corn, and the wee-wee

The good: Sasha's blood work came back fast, and she's all good!  Not a dang thing wrong with her.  I mean, her hair is a LOT thinner than it used to be, and she does have a noticeable bald spot, but likely that is because of the havoc wreaked on her system by the gluten she had been eating since she developed this sensitivity, that all came to a head in February.  (pun not intended) (;  The organic, gluten-free shampoo has been made and applied for the first time tonight, and I gotta tell you, I am impressed.  It's environmental, economical, and will not contribute to the alopecia.  I've been reading up on why people are making their own or just going with baking soda and apple cider vinegar, and it sounds good to me!  AND NO FRIGGIN' GMO CORN DERIVATIVES!!!  Which brings me to...

The corn: Since we noticed the smallest zebra unicorn went thin on hair (and just a little bald) we decided to put her back on vitamins until the blood work came back and could tell us if she was lacking anything, even though they contain corn derivatives.  After all, maybe she can handle some derivatives and perhaps just not stuff that contains a lot of the straight up protein.  It only took a few days of vitamins for her to turn over-the-top ugly, nasty, cranky, and she even had an accident in her bed, none of these behaviors have we seen since quitting the corn (a couple of weeks after we quit the wheat). Hence: The wee-wee. 

*sigh* It's all still so bizarre.  Less than 3 months ago I had a kid with a lot of symptoms that were getting quite worrisome.  Now it seems I have answers, but they're weird as heck, and have set me on a journey I could never have imagined.  I have learned the hard way that good, truly healthy food has to be a passion.  Good, safe household products have to be a rabid obsession.  I am so glad I live with my Mom, who is smart, supportive, and doesn't put up with any crap from my strong-willed zebra children, or anyone else for that matter.

So, no more stupid man-made vitamins for Sasha OR the rest of us!  We will keep eating lots of leafy greens, organic chicken livers and other vita-packed proteins, a variety of fresh fruits and veggies (minus the ones that kill Emily) and I'm going to check out our diary options.  And I may one day feel good enough to tackle more safe (read: pain-in-the-ass-to-make) bread.  It's funny, for as granola as all that sounds, and the fact that I haven't used toothpaste since about the middle of college, the amount of totally conventional western meds I'm on right now...we steer by the 7th dorsal wing...

And be merry

I feel better.  Because of you.  You who asked me what was going on in my life  so many times that I started a blog just so I could keep it all straight.  You who read this mess and give me recipes and refer me to websites and blogs and encourage me and get frustrated along with me, and you who simply read this mess and think about us.  Thank you.  I feel the love, especially lately.

And old friend dropped by yesterday and just beamed at me over the girls.  First of all, it was super good to see our old family friend.  But I had to scratch and claw my way out of my research pit/migraine meds daze to participate in his absolute spot-on delight with the kiddos.  Worth the effort, let me tell you.  And today between Sasha's Dr. appointment and poor Em's dang stomach still hurting, I at least got some good snuggle time in with each of them, and it was nice.

I am also less worried about making food. Sasha's eating good amounts of good food, gaining weight, and peeing and pooping.  The blood panel will tell us about thyroid and kidneys and nutrition levels and such. We take it from there and likely we do nothing but apply the steroid cream twice a day and proceed with life and wait for her hair to grow back.  If it takes me a while to dehydrate my kale chips and FINALLY figure out my ingredients and the damn bread machine, so be it.  They aren't going anywhere.

Emily now has her own migraine journal on my phone which works for abdominal migraines as well...*sigh*...so that when I do take her in, I am armed with numbers.  But unless it gets ridiculous and I want to put her on meds (NOT) there's nothing you can do but avoid triggers, which we haven't identified.  Watch and wait.  Hope and pray.  Eat, drink, and be merry.  Thanks for watching, waiting, hoping, and praying with me.  I'm working on the eat, drink, and be merry part.  I couldn't do it without you.

Time to (not) freak out! (?) .

Sometimes baby flying zebra unicorns get bald spots over night.  At least that's what the celiac website forum said.  I'll be making a Dr. appointment to rule out other things, hooray, another doctor appointment...and tomorrow Sasha will feast on liver and onions and increase her biotin intake since she hasn't been taking her vitamins because they have corn products in them.  We will now be finding out exactly how much corn product she can handle.  Em and I eat the same diet and didn't get bald spots last night, and I don't take vitamins either.  But we don't mind the gluten that's still probably hiding in the hair products.  I tried to order gluten free hair products off Amazon, and no joke, one had pomegranate (Em's allergic) one had nut oil (Em's also allergic) and the other had a one star rating.  It's not that my life pisses me off sometimes, it's that my life pisses me off all the time.

Like the playdate the girls went to today.  It's hard to be happy about the fact that they had a great time and the fact that I had a great time while I was there because I was there WAAAAAY longer than I was supposed to be.  The car appointment kept my Mom (she was supposed to take the girls) by an extra several hours and my lame-o nap was Over an hour overdue, during effing hormone week no less!  I sit here and type, stressed about Sasha's sweet head, while my own is burning, burning, burning.  My sweet friends made sure there were no nuts present so my girls could enjoy the super fun times, but if I could have a do-over, who would choose extra migraine pain!?

One of my best friends just asked me how I was doing, and not like a passing greeting either.  'Though I didn't want to, I had to stop and think about it.  I came to the conclusion that it feels like I am becoming an eternal asshole of the mind.  I used to be an encourager.  Now I'm fighting back panic at every turn, and trying not to despise God for not hurrying the f**k up and rescuing me.  When really, Emily just had one abdominal migraine, and is otherwise fine.  She's stubborn and awful, but that's good and normal.  Sasha's tummy aches are gone, her skin is clear of terrible rashes and scabs.  And also some hair on her head.  Well there are some steps to take and in about 3 months hopefully her whatever levels will be all balanced and/or I will have perfected the art of making my own shampoo from the organic liquid castile soap I just ordered.

It sure feels like the shit hit the fan.  I so desperately want to go back to when I had the worst of the problems in this house, and the kids were fine, and we just had one fairly easily manageable death-by-nut allergy.  But that's not even true.  I want so much more.  I want to shake all this shit off and escape this world entirely.  We were not meant for this.  And Emily's stomach hurts again.

We steer by the 7th dorsal wing

When you hear hoofbeats don't think horses, think 7-winged, flying, orange zebra unicorn.  It will save you some time.  We are looked at oddly, to be sure.  We don't eat what most of you do, but only because we can't, because our bodies are different, waaaaay different.  We do get some common ailments, and by common, I mean heard of, as in you've probably heard of someone who had abdominal migraines as a kid, with visual symptoms a couple of days before.  That's what Emily's random photosensitivity was all about last Friday.  It was a warning, a precursor to the crippling stomach pain AKA abdominal migraine that popped up a couple of days later and hung on and off for two days.  She's the right age, the right gender, and has the exact spot-on family history.  Despite living a pretty chill life and eating fresh fruits and veggies every day and being nut (pomegranate, pineapple, and now asparagus), gluten, and corn free, she's had an abdominal migraine at 5 1/2, that from the first visual symptom to the last day of crippling stomach pain lasted 5 days.  She wasn't debilitated for most of that even, but there were times when she had to be holed up in a dark room.  And now, she is unfortunately MUCH more sympathetic to me when I am laid up with a heinous migraine, as I have been these past two days.  "wheatcornandmigraines" was for Sasha, and Me.  "crazy not nuts" was for Emily. It was not supposed to get this confused, not this early, not by the third month of this blog.

On the way in to school today Emily was marveling that I had time to make sunbutter (sunflower seed butter) cookies for her class, since she knew my head had been burning all the day before and it was in fact still burning that morning.  I told her it was because I loved her and I knew she had been excited to share some safe snacks with her class, because she always has to bring her own be it for every day snack or for special birthday celebration day that they (are supposed to only) have once a month.  She was in awe that I would do that With a burning migraine, which I think made it easier for us to walk together through the disappointment of most of class not liking the cookies, or even the sweet potato chips that we are all addicted to!  Two items, few ingredients, lots of vitamins and minerals and pretty darn good for you and all scorned by the class.  And you know, if I didn't have a migraine, maybe I could have tried to come up with something more conventional.  But 7-winged flying orange zebra unicorns are going to eat weird food and have strange diseases and stick out like sore 3d thumbs regardless of location or amount of effort trying to appease North American horses who eat sad, limited diets full of shit that will eventually kill you.  Welcome to school honey.

I wonder how many horses of North America could at least grow wings if they ate REAL food?  Anyway, typically kids who get abdominal migraines develop full-blown migraines later in life.  So much now remains to be seen.  It this Emily's first and last?  I hesitate to speculate beyond that, just because there is no reality involving migraine of any type that I want her associate with.  We will continue to eat as much healthy, organic, unprocessed, non-nitrated and unsulfured food as possible.  I'm on a fricking war-path.  I have virtually no energy and I'm on a war path, fighting for the health of my two flying orange zebra unicorn children, who came from a family that doesn't look like the rest of the world around them.  And by the way, no I haven't even thought about reintroducing gluten back into to picture to see how much Sasha can handle if any!  Who needs gluten?!?   God help us all... 

So, about that Zebra...

Part of me doesn't even want to write about it, to acknowledge it even happened.  But I of all people should know that powering through and ignoring it only makes it worse.  Still, when Emily told me this morning before school that her eyes hated the light, I ignored her at first.  But she kept complaining, and kept complaining.  By the time I went and looked at her because she said that her eyes really hurt from the (quite normal) amount of light in the room, her eyes were all puffy from squinting.  She looked miserable.  If you know Emily, you know she can take pain.  I finally sent her to my room to lay down, because my room is a deep dark hole.  It's also not like her to want to be by herself in a pitch black room.  A few minutes later when it was time to leave for schol, I found her in there laying still, submerged in the covers.  *commence head shaking*  None of this is good...

My mom tells me that my first migraine hit when I was 5.  All I remember is laying on the couch, in a blanket taco, and not moving.  I remember it happening a few times when I was a kid, my whole body feeling sick.  I don't remember any visual symptoms.  Emily is 5 1/2, and her head didn't hurt, her stomach didn't hurt.  Just her eyes, and just from the light.  A couple of hours later she started getting better, as in she could hold her head up as long as she kept the sunglasses on.  The rest of the day her eyes were still a little sensitive, but then she ran around the house and did normal Emily things.  Then in the evening, her eyes started hurting a little again so I gave her a little kid cold pack and sent her back to the dungeon for a bit.  She emerged better, and watched part of a movie before dinner.  Then off to bed, while I ponder today's implications.

Part of me wants to cry uncontrollably, to rant and scream and swear.  I mean, God, can they please NOT be neurologically debilitated?  Maybe I'm just on edge from the asparagus incident that happened...oh yeah, last F***ing Friday.  I don't want her school to think she's only truant on Fridays or something! I'm not going to feed her asparagus until the summer, I swear!  But this...and all I can do is offer sunglasses and a hat and a blanket to throw over her head, because we have to take sissy to school...

It feels like I'm standing against a wall, watching something weird and possibly sinister unfold.  Sasha's wheat and corn sensitivities were crazyville, but at least there was stuff to do, to throw ourselves into that made her all better.  This is a slap in the face, a brand on the heart, and a horrific watch and wait.  And you know, she might be fine.  This might be as bad as it gets.  I pray to God that this is as bad as it ever gets.  Em gets to skip school and have a low-light, Mommy-and-Me day, and Mommy gets to hide how freaked-the-hell-out she is.  Boom.

Zebra Children

"Mom."
"What?"
"This morning I felt bumps on my cheeks so I got up and looked in the mirror and they are all pink."
"WHAT?!?"

10,000 thoughts started racing through my head at 7AM, like what we've been eating, what we did the day before, how much sun they girls have been in, every product I've been using on their skin and the frequency I've used it on their skin in the past week, month, and year.  Since we've been extremely limited in diet, the food should be pretty easy to figure out at least.  But since I've been pretty migrainy lately, nothing is easy.  It took me about 45 minutes to remember that the one thing we ate the night before that we haven't had in months is asparagus.  Roasted damn asparagus.  Now Emily's got a big, raised, bumpy hive on one side of her face, and a medium raised bumpy hive on the other, plus a bit of dry throat and runny nose.  And I can't send her to school like that because if she so much as coughs, they'll stab her with with her epi pen and send her to the hospital.

I spent the rest of the morning trying to determine if it IS the rare but not unheard of asparagus allergy or perhaps just something more simple and normal, like scarlet fever.  Being this was a Friday, I imagine waiting out the weekend will tell us.  Come Monday, turns out I think it's a bona fide effing asparagus allergy. REALLY?!?  Because we needed something else to avoid?!?!!!  I guess I should call the allergist, I'm just getting tired of seeing the inside of that office. (glazed stare)  I just don't want to see some idiot nurse practitioner who is going to tell me that it's atopic dermatitis and waste my time.  It's frustrating as hell.  And I'm about ready to cry that we're about to miss another playdate because it's going to interfere with my nap time, and because everyone's making PB&Js.  Maybe Grandma will take them.  And if Grandma takes them and they Don't make PB&Js then maybe...maybe...

There's a saying in the medical world, when you hear hoofbeats, think horses, not zebras.  That saying makes me laugh.  I'm sure it holds true in North America, where modern horses were introduced by the Spaniards.  But what does the African medical world say?  And take for instance every migraine remedy that's ever worked for every other person that hasn't worked for me.  I am such on the extreme end of migraineur, and my children on the bizarre end of food allergy and sensitivity.  We are the zebra children of North America.  And truth be told, I've always been a zebra child on this continent.  What to effing do...?  For all the research my phone allows me to do on the fly, I'm about ready to throw it out the window that it can't keep me from getting sick, can't allow my girls to eat whatever they want.  At least it still tunes my guitar.

Speaking of, it tuned my guitar when I led worship on Sunday, last minute for a small church I occasionally help out when their worship leader is gone.  And I felt just good enough to do it.  Just when I think I am forgotten, turns out I am not.  The girls couldn't go to Sunday School because it involved trail mix :-/ but I dusted off my guitar and my voice.  Grandma's a hoss (already knew that) and kept the little zebras in line.  Not, bad.  Trail mix?  We don't need no stinking trail mix.

Torture Sasha

That's what the allergist said in so many words.  Since there's a "mind-boggling" range of gluten sensitivities ranging from mild to celiac, and since the scratch test doesn't test for those (yeah thanks) he said to keep her clear of gluten for 3 months, and then start seeing how much she can handle, if any.  Which means slowly reintroducing gluten into her diet until symptoms start showing back up.  Because "Maybe she can handle a sandwich a week."  If she can't handle any, he gave me the name of one of the top Pediatric GI/Celiac specialists in the country, who happens to be in town.  Not that you can do anything besides eliminate gluten, just for more info if I should want it.

1. My allergists doesn't know what boggles my mind, and certainly it isn't the range of gluten sensitivities present in the human population.  More like the fact that I had a huge migraine and was on a lot of drugs when we had the appointment and I forgot to ask for a blood test.  Actually, that doesn't boggle my mind either, that just pissed me off.  What truly boggles my mind is the amount of work I'll have to do to get back in to the dang office to request a blood test to seriously rule out allergy before I start torturing Sasha.

2. Corn.  I'm on my own.  The allergist when he was studying in the 70s and 80s learned that corn allergy was tricky and not well understood.  He studied a case where a kid would present symptoms one day and not the next.  Sasha's scratch test came up negative, but a day or two after getting corn products, she gets symptoms.  He recommended I keep her clear of corn for a month and then slowly reintroduce and see what happens. O.M.G.

Why do I want to give Sasha small amounts of something that makes her sick?  So that when the butt and face rash shows up and I'll know she had one cracker too many the day before? So she can be miserable and whiny and throw super-fits just for convenience sake?  It will be good to know if xanthan gum is ok to have every day but another thing that boggles my mind is the amount of GMO corn products hidden in our food.  Ever notice that almost everything has "natural flavor" in it?  That's probably MSG and genetically modified (GMO) corn products!  And they don't have to tell you, because the FDA has deemed it safe and "Natural".  Ugh.  But at times, with these migraines, I've been so frustrated that I'd trade food allergies for msg, and take peace of mind with GMO corn products in everything.  In pain and extremely limited sucks.

At least we have an allergist-approved torture plan with a time-frame, a straw to grasp in this ocean of unknowns.  And I've taken no pain meds in 2 days, and managed a few minutes of yoga today.  I don't even know how motivated I am to reclaim my motivation, my joie de vivre, but I know that doing nothing isn't doing anything for me.  Not that doing anything has helped either...quite a fix I'm in really. I do know that my kids are pretty dang awesome, and I'm their only Mom.  On to tomorrow then!