Triupmh

Omg, May, May, go away!
Come again some other year...

But really, there have been some serious triumphs today.  And by today I mean yesterday. (pre-2AM)

1.  I killed a cold sore in a few hours with essential oils. HOURS.  I could write a whole blog just about that.  Message me.  It involves doTerra Melaleuca oil.

2.  Sasha said it was a good day.  This despite going on a week of migraine, and a double earache.  Yes I AM hitting the essential oils a lot harder.  Please see #1.

3.  I ate a whole burrito bowl of Chipotle for dinner.  Granted there were no beans, they forgot the quac, and Mom agreed that they skimped us all on the portions, but this is HUGE for me lately, and possibly ever.  See #4.

4.  If you read Irrelevant Tea, you may or may not have understood that Topamax can make you lose weight. [raises hand]  Beloved Neurologist wasn't going to let me lower my dosage at my last meeting.  I mean appointment.  It's so funny, when you re-word a proposal and threaten to do something stupid, with no fanfare, how much more keen a simple thing like 100mg a day becomes.  But, we did have a shitload of stuff to cover, (we always have so much to talk about) the kids were there, I was getting injected with Botulinum type A, and we're still catching up from my year-long sabbatical.  Lol, "sabbatical".  So I didn't make a very good case at the time.  Either way, problem solved!  And as I had already started, it feels like I am already getting my brain and my stomach back, just a little.  I mean, I'm still nauseated MOST of the time, just not ALL of the time.  Actually, maybe I can downgrade it to just Much of the time...2 more days and I'm dropping another 100mg.  Eff.  That.  Mess.  Because, if it were preventing any migraine whatsoever, that would be one thing...

Play that triumphant music!!!  And the "huzzah" grows weaker as my head slowly tilts to the side.  I forgot a triumph, perhaps because it has a mirror twin called "nevermind".  I took no rescue meds today, but as it is now 2:22AM, I strongly suspect I will take some tomorrow.  This would put May at 19 migraine days, tying December for 2nd place as Most Migraines Ever since I started keeping track about 4 years ago.  Oooooh, but what if I don't...and...what if Sasha feels better tomorrow?  What if for a day, life wasn't a horrendous battle?  *giggle*  I kid. (;  We'll take it either way.  But it's fun to make up stories once in a while.

Anyway more good news.  I'm hungry.

Irrelevant Tea

I dream of drinking tea again
I do know it will happen when
I have the energy to make
The trip from lip to cup and take
A sip, repeatedly in fact
Until the last drop's un-intact
And rested happily inside
my belly with its friends (and died).


I wonder if I'll be able to compose silly poems at the drop of a hat when I'm on less Topamax, or when I ever get off of it completely.  I know that was one of the side effects, that and inventing words.  That poem took maybe 60 seconds to compose.  I asked at my last appointment if we could lower the dosage but Beloved Neurologist wanted to wait until my next round of Botulism.  I'm not sure I'm going to make it.

I seriously just spent like, 20-30 minutes reading Honest Toddler stuff on fb.  It's hilarious, especially if you've ever had prolonged contact with a "spirited" toddler.  When I'm not researching my face off, I sometimes read funny things.  Man, I can literally feel sentences becoming harder to from.  Hehe..."form", not "from".  Making good sentences verbally is also a side effect, and I declare that writing and typing also are difficulte and what I menat to say what that speaking clearly and coherently becomes more difficult. *typos left in for emphasis*  **I did not add extra typos on puprose**

Um, what I meant was probably something along the lines of:
Blog Post
Not much is new
I like watching Giants Baseball
It's not the end of June yet so I'm still on schedule to feel better by the end of June.
Need to gain weight, Topamax not helping

I'll probably survive maxed out on Topamax, so long as I stop being in a constant state of migraine and make food and eat it.  Mmmmmmake food and eat it...

Numb3rs Don't Lie

I've tried to write several times in the past few weeks.  It has essentially been too painful in every way.  But no longer. >:-)  I'm done apologizing for being sick all the time.  Most of this sick-guilt comes from me, but some of it comes from others, usually unintentionally.  Chronic illness is a total bitch.  Total.  And I've come to understand that it's not most people's reality.  That is fortunate.

I'm definitely depressed, but starting to come out of it.  Finally, FINALLY seeing my old neurologist again was a real boost.  That was such a boost for many reasons, not the least because I am getting botox either this week or next lord willing!  I am getting help.  Medical professionals are being helpful! :,-D  It feels like an absolute miracle.  And this week is my mom's spring break, so it's like a staycation, where I can just worry about not feeling like crap. (glorious!) That is important, considering I have already had 15 rescue med days this month, (11 in a row so far. Jesus, 12 since I started freaking writing uuuugh!!!!!) and shark week is coming up fast.  The numbers this month are going to approach record levels, so again, I'm done apologizing for missing things like birthday parties, playdates, and visits about the country.  I'm done apologizing for inconveniencing people's schedules especially when they mistake us for a normal family because they do not understand the implications of Food Allergies and Chronic Debilitating Migraines under one roof!  I can't feel badly about it anymore because that is not helpful to me or my family.  Feeling good about things is helpful and I know, I KNOW I've done a good job doing everything I can to manage and get better.  It just FEELS like there is no escape and it will never get any better.

We are here, and here isn't as bad as it could be.  It's definitely sad, or, it definitely was.  I feel a little bit like Elsa only without any discernible power, and instead of freezing everything and running away, I'm just letting everything go and staying put.  So, not really like Elsa at all.  I said FEELING ok?!  Basically I just don't care anymore.  Actually I never cared much, and now I don't care at all.   So anyway, the girls are being way more helpful more or less!  As in, once Mom and I confiscated every single stuffed animal, threw out most of their toys, and took all their money, they really started helping out around the house!  Dishes, laundry, cleaning their room and the house in general, you name it.  I am very much Not joking.  Sasha feels much better in their easy-to-clean room, and they even get excited about picking up the animal poop.  Ah, perspective and priorities are wonderful things!

Aw shoot, is that what Jesus did to me?  He took away all the things I liked so I would start being helpful and doing what he told me?!?!!  Thats crap man.  Was I really as disobedient and awful and mean and lazy as my kids?  The flood story makes so much sense now. :-/

So anyway, I finally saw my once and future and now current Neurologist whom I love dearly.  Her office lady (who has already received flowers) is working her magic to wrangle both insurances so that I can have botulism injected into my face as soon and as cheaply as possible.  I haven't run out of meds nor feared running out in a while since I'm really figuring out how to use rescue meds in conjuntion with mmj and my new brain tiara.  My Cefaly unit (brain tiara) will hopefully start preventing migraine in another month right about when the (lord willing) Botox kicks in.  So like, by the end of June I predict 14 migraine days or fewer!

In summary, if all things work out as well as possible, I should be getting 14 or fewer migraine days a month by the end of June. [read: sadly, that is great improvement]  April will be another record month and May might still be as well.  And that right there is why I give two farts about anything beside getting the kids fed, dressed, and to school.  My poor wonderful Mom. HI MOM!!!

ps.  I have a sore throat.  Also I want to chop my hair OFF!

The Final March

Me: "Do you ever want to rip your own brain out and just stare at it?" [and ask it what the hell is wrong with it]

My Mom: "No. Goodnight!"

Me: "Goodnight! Sleep well."

1. It's been two years since we stopped eating wheat and corn.  It's been two years since we thought we stopped eating wheat and corn.  And stuff.  And after Sasha puked yesterday and had a shower (and I mopped up the hallway and hosed off the hall carpet on the front lawn) she put on some clothes.  Interestingly she put on the same shirt the Emily had on two years ago when we took Grandma some birthday stuff and discovered that Sasha was reactive to wheat.  For photographic evidence, see here.

http://wheatcornandmigraines.blogspot.com/2013/03/1-year-of-wingin-it.html

And here.

So, that was something.  Sasha is neurologically "sound", aside from the two weeks of migraine so far she's just had, culminating thus far with playing slip-n-slide in the hallway in her own revisit of lunch.  It's not as fun as it sounds.  Order number one is to get asses to the neurologist and let's fix this shall we?  Apparently Imitrex is corn-lite, and while not approved for minors, Emily sure takes it.

2. Speaking of asses to the neurologist, I have a potential future appointment with my once and future neurologist [Lord Willing, assuming the appropriate hoops have been jumped through] once my new insurance kicks in on APRIL FOOLS DAY!!!  I'm pretty sure that no other comment is useful, appropriate, or necessary and all I can think of is more expletives anyway.  Oh, except that I assume that puts Botox aka ACTUAL help somewhere between May or Maybe never?  Haha! I kid...O.o

3. The girls' dad will be here tomorrow and we have 12 shit tons of paperwork to do.  And then FECB arrives! And then Aunty comes to visit!  And that all takes us to the end of the month.  So maybe the final March won't be a death March after all? FECB<3 FECB<3 I love you too Aunty but you're not a cute boy. (;

4.  If you adjust for number of calendar days, February actually had more over all migraine days than December, when I had a raging infection that I am just finally recovering the last of my hearing from.  I am genuinely surprised by this.  And it's hard to surprise me with crap news.

So to recap what I expect from this final March before April Fool's day when I can MAYbe start writing a book about the year I went without botox for no good reason at all because I had insurance and then stopped paying rent so I could have two insurances to help fix my broken brain and my broken kids:

I will be home. Juicing leafy greens, apples, carrots and celery, doing yoga, meditating on and worshiping Jesus, and not feeding Sasha corn out of plastic containers.  I will probably have a migraine.  If you would like to fold my laundry while I alternately weep, meditate, research, and go all Gallagher on fruits and veggies, I'm sure it will make you a better person somehow and I will praise you highly in the footnotes of my upcoming bestseller The Final March.*

{Deep breaths} See, it's times like this that I love the imaginary tattoo on my arm.  For those of you who don't know, it says "I Lack Nothing" in pretty letters.  This is the Final March because it's the final big awful push before this horrible grind is over.  I fully expect help and rescue and healing for all of us.  Maybe not exactly on April fool's day, although how hilarious would that be? (:  Maybe sooner, maybe tomorrow? {deeep breath} That would friggin' rule.  But whatever yo.  What I really want is for Sasha to get better and if she has to eat weird shit the rest of her life then fine but can she at least go back to effing pre-k?  We missed chapel AND the block party last week and that is epic amounts of suck right there.  Oh but let it be known, I trust God with my babies.  I will take all of our asses to as many neurologists and allergists as it takes and juice and smoothie and yogacise through as many hoops as I can manage but this world wearies me and I want another home.  I refuse to believe that we were made for this.  And if we weren't made for this then clearly we were made for something else, and I trust that God will not leave us hanging.  Plus we really do enjoy each others company.  And the juice is actually pretty good and so is the yoga.  And so is the weeping and meditating for that matter.  In fact the only part of this that sucks is the migraines.  

Let's do this.  Let's March.

*I might forget to do that. If you do come fold laundry, please be sure to make a note of it in the comment section.  But only if you also put it away.  If you don't put it away, don't bother folding it bc the kids and the dog will just knock it over and step on it and make it back into a pile but thanks anyway. <3

Fury and Debilitating Love (rated R)

Expletive Expletive Expletive Expletive Expletive.  Darn that it takes so long to type, because in my head it comes out like machine-gun fire.  So fast and hot and furious, like spit and anger and definitely not love. Mulitplied by, geeze, at least 50.  I was going to say ten thousand but to be fair, these are people we're dealing with and they do have families and such so, I don't ACTUALLY want them murdered in their sleep.  I just want them to do their expletiving jobs because when I was a violin teacher, my students had the option of quitting and NONE OF THEM EVER DID.  I quit, to have Emily.  Why the fuck did I have to call my neurologist's office and tell them how to put in a request with my insurance to inject my face with botulism?  If I have to tell them how to just do the goddamned paperwork, do I really want them in charge of injecting me from the shoulders on up, with botulism?

It's taken me about 7 hours to calm down enough to be able to be able to really process this, the scope and magnitude of the problem I'm facing here.  First there was the last name mix up.  As much as I'd like to have my old last name back asap, I still have my "married" name on all official paperwork.  Hah.  Paperwork.  That implies work was done.  Anyway, somewhere between still working in the same office as my old neurologist (even tho I see him at a different location) they managed to stick my maiden name on all my new paperwork.  My maiden name isn't on anything, not any ID anywhere, and I was never referred to as such as the old office.  My god, if only social security were so efficient at changing names!  They say it's not affecting service, I just have to make sure to use it when identifying myself, and then I have to go to hospital records and change it when I get the time and energy thank you so much for that.  Then I've been under the impression for two months that we've been waiting on my jagweed insurance to approve the botox since you know, they like to put up as many roadblocks as possible which are the exact words my new neurologist said to me.  ("roadblocks" not "jagweeds") Except he forgot to mention that his people have no clue how to do paperwork, a fact I should have picked up from the name fiasco.  My bad.  And while I spent a month dying and another month recovering, both with record setting amounts of migraine days, I haven't been hounding people for answers as to why approval is taking so long.  After just getting a new neurologist took so long.  (genuine insurance-at-fault mix up, 'they' tell me) And then just getting an appointment took...so...long.

Here.  Here is where I grapple...no.  Here is where I fucking lose it.  No really, here is where I would turn to dust and blow away but for faithful friends and family and promises and the best kids ever.  Oh hell no, no one made it to school today.  Because yesterday I decided to not take any rescue meds just because I was sick of it.  So come 5 after midnight, me and the heavy meds had a small and quick meeting and it went something like *gulp*.  And I tell you what, I met and exceeded the hell out of my only goal for today which was tracking down the medical idiocy for lo and behold I also a) showered and b) did the dishes!  I guess it was a banner day now that I think about it.  Not bad for letting the natives run wild, not getting up until almost 10:30, and vaporizing MMJ.  And now I will show you a way that is beyond comparison...

Among other things, love is not easily angered or resentful. Expletive. Expletive expletive expletive expletive.  Although, not quite as machine-gun-y. *throws hands up in frustrations*  Well obviously I suck at loving in general, and especially at loving my life right now, and most especially these *shaking in anger* expletiving expletives whom I have chosen to see right now for medical "care" because I thought it would be overall better than going to San Fran or Standford and getting on a 6-9 month wait list just to get in and then waiting for approval and THEN getting shot up with botulism, and skipping naps for every appointment which just means a bonus migraine.  Effing hindsight.  I'm sure Jesus, that none of this took you by surprise.  I need your debilitating love to stop me from hurting myself and others.  BECAUSE THE FIRST THING THAT LOVE IS, IS PATIENT AAAAAAAAAAUUUUUGGGHH  #FAIL #FAIL #FAAAAIIIIIIILLLL!!!!!!!!!!!!
Amen.

Wait.

Love is...patient? *blink* How long in what language has patient [wait with a good attitude] meant patient [person with a medical need]?  It looks weird and french to me.  Totally unfair Jesus.  Totally unfair and touché, I see what you did there.  #wellplayedjesuswellplayed

Oceans, tears, and my FECB

Fine, FINE!  Oh no really, *happy sigh* it's way more than fine, and if it hits the fan and disintegrates, I had my chance and one of you should pick him up, because he's an excellent decision, which is in fact what made me decide to unblock him from facebook and start talking to him again in the first place.  My bad.  But that's probably another blog entirely, and certainly another story for another day.  But since you were asking (and a few of you are now fb stalking me) here's who he is, (who I am) and also why I was front and center stage yesterday, crying and shaking during Both services.  This is my blog, and why I may have to re-address it wheatcornmigraineslegosandlightsabers.

Actually, if you want all the gory details of my life, there are like 2 years of posts you can weed through at your own leisure.  That's pronounced like 'pleasure', like Captain Picard would say it. Sorry for the typos and general word vomit.  As you read, you'll understand why.  I guess I'll start with yesterday and work my way back.  I haven't been on the worship team in months, most recently because of a killer bout of sinus/ double ear infection, topped off with ever present come-and-go migraine.  Migraine is par for the course right now, exacerbated by insurance woes [read: jagweeds], whereas the infection was just a once in a blue moon winter bonus.  So finally I get back and I am informed that I get to lead the song Oceans, a song I first became aware of because one of my best friends found it helpful after her infant son went home to Jesus.  Let's just pause to digest that shall we? {......pause for reflection......}  Okay, so now I'm really learning this song and consciously NOT thinking about how I first became aware of it, because there's no way I'm going to be able to lead this song otherwise.  Worship yes, lead, maybe not. But don't worry, apparently there's plenty of drama in my life to derail the leading of this song anyway...

You see, come the bridge where it talks about being led to where my faith is without borders, well, I feel like I've been living there for I don't even know how many years now.  As in, life has been senseless and terrifying in just about every possible way for so long, that I haven't even known how to dream anymore and that is not hyperbole.  Not that I would have called it bad per se.  My family and my friends kick ass, and clearly we have been provided for.  But seriously, blind faith and trust leaves you weary as hell.  Bone dry weary.  Maybe I've been doing it wrong and maybe it's just where I've needed to be.  Of course refinement sucks, but so does my attitude sometimes. [read: a LOT] I do know this 'though, that anyone prone to encouraging others also needs a lot of encouraging, and there's just something different when a cute boy who waits two years for you to come around is relentless about encouraging you. :D  Enter Curtismeister, who is an old friend, who waited forever...

So, I've been obsessed with Psalm 23 as per my last post.  Well lo and behold my first time back to Sunday service in weeks revealed to me that we are doing a series on...PSALM 23!!! So yeah, stoked. (That's californian for 'really excited', like stoking a fire) Somewhere between studying the verses I have been most encouraged by lately, reconnecting with Curtis which has pretty much been the best thing ever, and standing in front of the entire congregation and pouring our guts out together to Jesus, well, it was a #beautifulmess.  At least that's what I'm going to tell myself until I watch the recording. :-/  I've been leading worship...holy crap for 21 years!  I've never lost it like that before.  I must finally be growing up.  And I don't think crying and shaking while leading worship counts as 'losing it'.  It was definitely new.  Change and let go.  I lack nothing.  Told ya.

Oh yeah, I was supposed to tell you about my FECB, my Fancy East Coast Boyfriend.  What am I supposed to say?  He's a boy! He likes legos and nerf guns and star wars!  Yes Trish, he is aware of and avoiding gluten, happy?!?  Not because he hates it, because of our weird family, which he really likes!!  He's an introverted nerd like my mom, and he moonlights as a preacher, like my dad.  And he's a boy, like the cat.  Any questions?  Change and let go is scary, but much better than senseless and terrifying.  And anyway fear is the mind killer.  I will let my fear pass through me.  Maybe I WILL get a tattoo after all.
#ilacknothing

My Tatted Arms

If I were to ever get tattoed, I would probably get the words "Change and Let Go" on my right arm, and "I Lack Nothing" on my left.  The words on the right have been a mantra since my eyes became lasers that attempt to root out all things glutenous and corn, on top of our already interesting existence here at #casaespinoza.  We wouldn't survive without constantly letting go of things, and changing our definition of not only breakfast lunch and dinner, but also birthdays, holidays, school activities and advocation, travel, church, arts and crafts, shit you name it!  But I digress.  The words on the left are of course from psalm 23: "The Lord is my shepherd, I lack nothing." Devastatingly simple and obvious, yet easy to forget and hugely consequential.  And when you put them together, there is no fear left to hold you back.

Me and my imaginary tattooes have recorded 5 days this month with no migraine rescue meds so far! Which I think think puts me on track to have an even better month than last, which is great since I am not anticipating any more group illness leading to a downward spiral of infections, plugged ears, fits of crying etc..  In fact, so confident were we that our Christmas vacay was topped with a trip to some family's house, no small feat considering the amount of food and meds we have to take!  The small mammals ran circles outside all day every day, and we even came home with an outdoor/patio, vintage model cat, Captian VonCatt. He's at least 10, and will hopefully die before Indie, thus emotionally preparing us for her eventual passing.  Ah, life. (: Sasha is having a harder time with change and let go, as she wept and had to remover herself from the vet's office at the "saddest news of her life" yesterday upon finding out that Captain is old, and not particularly spry. But he is sweet, and partial to being held and petted.

I was very proud of Sash for working through her feelings yesterday, and even still today.  This morning whilst huddling about the heater she asked me how a person could be happy and sad at the same time.  This led to a discussion about contentment vs circumstances, and knowing that she was loved all the time no matter what.  And possibly also about sleeping baby unicorns...or was that from yesterday?  She pretty much IS Agnes from Despicable Me.  And Emily was so awesome, trying to help cheer her up as much as possible.  They do try to break me in turns, but it's pretty much what I expected.  And then they really pull it out sometimes.  Thus continues the reminders that life is good, and has hard times which suck, vs life being hard and sucking, a mindset I had inadvertently adopted sometime over the past (mumbles) years.  #revelation  Oh that's right, I Lack Nothing.

Rope Swings At Sunset, Vacay