Sunday, September 29, 2013

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

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

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

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

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

Saturday, September 28, 2013

The Ridiculon

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

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

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

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

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

#entertheridiculon


Wednesday, September 4, 2013

No nuts Donuts

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

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

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

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

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

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

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

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

#becauseeatingshouldntsuck  #migrainessuck #donutsaregood #sashilysnonutsdonuts