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...