Friday, April 27, 2012

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.

Wednesday, April 25, 2012

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.

Wednesday, April 11, 2012

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!


Wednesday, April 4, 2012

Seasons In My Pan

The comal came seasoned.  And why I had to order one off Amazon I'll never know, as I live on the East Side, where you can get just about anything that you can get in Mexico.  Apparently the tortilla pans in Mexico are all cast aluminum or coated in petrochemicals these days.  So my "authentic Mexican" cast iron tortilla pan came from Amazon, unfortunately pre-seasoned with who-knows-what kind of oil.  It was my only option, since the other cast iron comal on Amazon was declared pre-seasoned, and at least the photo of this one was not seasoned, even 'though one reviewer complained that it came pre-seasoned anyway.  So I spent some time scrubbing the crap out of it before I re-seasoned it with non-corn oil, so I could toast the small and weird bread that the toaster eats, so I could more successfully make sandwiches.  Mission accomplished.  Exhaustion accomplished.  Then again, it's not Amazon's fault that it's hormone week, and hormones still trump Topamax, Verapamil, Botox, plus a complete (COMPLETE!!!) diet change. C'est la vie. (damn la vie.)

The research is killing me in that it's so defeating.  If I could just drop the idea of bread I think I may be happier. It's just that I don't like the idea of virtually non-nutritive bread.  Blame my Dad, who was eating whole grains when everyone was eating white bread, and putting wheat germ in his yogurt when everyone was eating twinkies.  There are so many factors making this quest for bread just stupid.  No gluten, not hard. Nothing corn, hard.  Not processed near nuts, down to about 3 companies.  Whole grain, no gluten, nothing corn, not processed near nuts?!?!! One company, costs an arm, plus a leg for shipping, and the crap falls apart unless you get a pre-seasoned, authentic Mexican cast-iron tortilla pan from Amazon.  Why cast iron?  It actually bumps up your iron intake a little.  (and no damn petrochemicals in the food!) Plus, I live on the East Side, where it never hurts to have an extra weapon handy. ;)

In college, I once did a 10-page research paper in 4 hours, start to finish, and got an A.  I learned that particular method from my killer sophomore English teacher in High School, but I've always been an information junkie.  I wonder if God made me an information junkie just for this reason?  I mean, the advent of the information superhighway has been such a dream for me, because I can look up song lyrics, answers to questions, people on the Muppet Show I don't remember, etc.. And it's been my biggest ally, as well as my biggest frustration lately.  On it I have learned quickly that truly, we are so limited.  I can't find any dang arrowroot that's not been processed near tree nuts!  I don't feel like that fact should bring me to tears, and yet, it's almost too much.  And all the moms-with-the-kids-with-food-allergies-blogs say to focus on what you CAN have, not on what you can't.  I promise you, none of them are single moms debilitated by chronic heinous migraines. (insert storm clouds) But still we thrive.  My Mom whipped up a terrific dinner last night of tuna, rice pasta, peas, and parmesan. I thought it sounded gross, but we Devoured it!

I went 14 days without pain meds, several of those days without any real pain. (ie, only minor pain. ie ie, every day there is some pain. There are no days in my life without pain.  I hurt every single day of my life and maybe that's why it's hard to stay positive all the time, just to throw that out.) But maybe day two of hormone migraine after two weeks no pain meds isn't a good day to write.  Then again, I have to live every day, I have to face my kids every day, my Mom and my dog every day.  And every day takes energy, the precious commodity I so lack.  And everything that we CAN have takes energy to make.  Coping with pain takes energy, especially constant pain, even if it's not terrible pain.  But some days it is terrible pain, and the kids gotta eat either way.  But today, not so bad.  I had an amazing nap, and after naps the day was not so bad at all. (We won't talk about before naps.)  After naps, fresh lemonade was involved, and we can have that.

In two days the journey continues and the theory is, we get to actually talk face to face with the actual allergist.  Probably that will just mean a lot more waiting, for more test results and possibly more referrals.  Whoop, E.  Scientific validation would be super nice, I'll admit.  But best of all, even the tiny bumps are finally gone from Sasha's nose.  Hallelujah.  Sweet baby, it is ALL WORTH IT!!!...and that is far more worth the tears.