TMI-This product may cause sudden explosive diarrhea

Let's talk about sudden, explosive diarrhea.   It is uncomfortable, as you might imagine.  Or maybe you don't have to imagine, because you've had it, and you are now recalling the circumstances that brought you the feeling of ominous death in your guts, your mad dash to the water closet, and the violent expulsion that ultimately, brought relief.

Grapes are supposed to be a low nickel food.  I am way stupid sensitive to nickel in plant based food, so my diet is stupid limited.  (because we don't have enough food issues here, apparently) Grapes are about the only convenient fruit I thought was safe.  4 grapes and 4 hours later, I'm not so sure anymore.

In my reading about explosive diarrhea, I learned that your intestines are made of epithelial cells, which are also the type of cells your skin is made of.  It makes a little more sense now why nickel runs screaming from my body, since even most doctors still consider nickel allergy to be just a skin contact issue.  But in all fairness, even among nickel allergics it usually is.

And while hopefully the vast majority of the excess grape nickel has made its great escape, I must still contend with the residual itch, the small pokey spots that pop up on my face, neck, chest, and arms lest I forget so quickly the consequences of forbidden food.

I am angry.  I am upset that at 36 I can learn how to use a real abacus and also teach my migraine-plagued 7 year old, read Don Quixote in Spanish and English, keep everyone's regular pills, migraine journals, food allergies, emergency meds, and doctor appointment straight, and still have no hope for a future until glorious death frees us from the shit bombs known as Today, Tomorrow, and the Next Day.  No amount of effort is going to cure any of us of anything.  I don't feel like there is much of a point to doing cool nerd things, when what I really need is to have the FUCKING ENERGY TO GROW FOOD.  Food I can't eat of course, but that's hardly relevant since it would be food my kid/s can eat.  This, this is not life.  I walk around in a pretend, fake body, waiting for the end of a pretend, fake world.

We are utterly in God's hands, and God's hands kind of suck right now.  I watch my friends go through cycles of life, you know, highs and lows.  We don't have cycles, just sick, sicker, and completely non-functional.  For years now, that's it!  But maybe Sasha will get so obsessed with abacus math that she'll become a mathematician, make lots of money even WITH continual migraine and disabling corn allergy, and be able to start her own corn free farm, thus revolutionizing food in crap America.

And maybe someday crap food America won't be a wretched majority two-party system of government.  Hah.

The Bottle of my Mind

I slept about a bajillion hours yesterday, which was good because today was a big day full of many errands.  The most disconcerting thing I did today was add to Emily's migraine journal.  The most fun thing I did today was buy school supplies at Target.  The things I am most proud of accomplishing today are hitting two doctor appointments (one for each child) and processing some pears and zucchinis.  I don't think today would have been NEARLY as productive if I hadn't slept so much yesterday, and I would not have slept so much yesterday if I hadn't been fighting migraine all weekend.  This is not an upside to migraine, but it does make me wonder if I'm a new species, a step backward on the evolutionary ladder if you will.

My brain is still a little...buzzy.  It feels fuzzy, but at least it doesn't feel like vomiting anymore.  It's the difference between being able to give the definitions to words my kids are constantly asking for, and waving them away.   And the evening exhaustion is still a go-and-hide kind, but at least it's not a run-weeping-and-slam-the-door kind.  Oh, and I haven't collapsed on the floor at any point today, so bonus.

There's just got to be a better way to get here.  And then, *sigh* Em's pediatrician had to point out today that "These are things we don't normally see" at our referral appointment.  You know, as I sat there with my one corn allergy kid who already goes to UCSF for uncontrolled migraine, and he's examining my other allergy kid whose migraine monster just woke up, like The Obvious wasn't just staring us in the face but also doesn't have its fingers up our noses; Ya, pretty sure I'm aware nothing about us is normal, which is why we go to the doctor like most people get pizza.

So, another trip to UCSF in November, and another in December, and after that hopefully we can either get the girls appointments aligned or do them over the computer, or align them over the computer.  They're all kinds fancy like that.  Until then, I've got to teach Em to grit her teeth and cope with the pain, because school exists.  She just joined the band too, damn it.  Which brings me to our futurecast...

We know a lot more about migraine now than when I was a kid.  No one is telling me that Emily either has Leukemia or growing pains, as my mom was told when I was having undiagnosed abdominal migraines as a kid.  Sasha is already on better meds than I was on ten years ago, and the fact that Emily will be on her second set of neurologists soon is orders of magnitude beyond where I was at her age.  And yet, I still can't imagine anything close to a decent life for either of them.  I'm sure this is just me projecting, and by no means do I spend time worrying about their futures.  Ain't nobody got time for that mess, it's still pear season for the love of all things holy!  But every time we talk about future anything, it feels like pretend.

But we found a really cool notebook at Target today.  It has movable tabs, pockets, and even a spot to hold onto your pen.  Plus I got a couple of nifty D ring binders for my homeschool schnazz.  Still hate homeschool, still love school supplies.  Oh, and when we got there, they hadn't even popped the popcorn yet so Sasha didn't have to wear her mask.  Double Bonus.  Triple bonus, my new organizational paradigm arrives Wednesday.

20 cent October (pair of dimes)

So, I need a moderately convenient way to keep two paper migraine journals, because that's how UCSF rolls.  The three different apps on my phone are obnoxious enough, but at least they keep mine, Sasha's, and Emily's separate.  And truth be told, I haven't used it for Sasha in a million years because there is no point currently.  However, Sasha has two paper migraine journals.  Now Emily is going to have the app as well as the UCSF journal, since she started getting abdominal migraines again, and until we actually can get to UCSF, I may as well start getting used to their journaling for her as well as Sasha.  Actually, we'll be using those for the foreseeable future.

Fuck.  I don't want to carry around a clipboard.  Those stupid things are a full sheet of paper each.  UCSF is the best place I've ever been to, but their migraine journals suck.  First of all, they need to be electronic because IT'S THE YEAR TWO THOUSAND FIFTEEN.  Second, I already carry a backpack for everyone's emergency meds, emergency food and water, emergency hats and shades etc., I don't want a bigger one for our flipping migraine journals as well.

There is no pinterest for us.  Actually, maybe there is, I just haven't looked. Quick, someone see if there's a pinterest for how to keep all your paper migraine journals and emergency food and meds handy and organized.

I'm afraid I need a new backpack organizational paradigm. Swear swear swear swear swear.  Oh wait, undetectable extension charm!!!  Shoot, never mind.  Blagh.  I need...something.  You know, Tom Bihn, maker of all things svelte in the bag and organizational department, probably has exactly what I need.  *sigh*  It'll just cost.  But everything costs.

Dear Jesus, please bless us with unlimited energy, health, and money.  Amen.

You know, someday I would like to carry a  pretty purse, play music, and purchase and wear clothes beside the same jeans and t-shirts I've been wearing for untold years now.  Not that I'm upset about my awesome backpack (which i LOVE!!!) or my clothes, but I do miss the music.  And the interaction with grown-ups about other stuff beside illness.  But I do enjoy the feeling of badassery that comes with canning and preserving food, and surviving the massive shitstorm that is our life.  I mean, mainly it sucks missing everything and not talking to friends and family and feeling misunderstood and writing letter after letter and blog after blog about the same thing, but thankfully, we are not without triumph.

Well, I've gotta go pickup some homeschool curriculum, and blow money on a new organizational paradigm.  Then of course there is more food prep to do since I'm always behind, this week due to lovely hormone migraine.  Change And Let Go, my favorite invisible tattoo is always there to help me roll with it.  I Lack Nothing has been less helpful these days, but we're still here I guess.  It's probably good I have both, if for nothing else than balance and symmetry.  Hah, at least my invisible tattoos are balanced, if nothing else in my life is!

Remember Sucktember

Something happened.  Looking back on my migraine journal and blog, I now recall why the phrase Sucktember comes to mind.  We here on the central coast enjoy a late summer, basically as soon as real summer starts winding down into fall BAM!  And we have gotten hammered this year with heat and fluctuating barometric pressure.  My physical therapist specializes in foot, neck and head pain, which is something you can't even do in other parts of the country!  It seems we are specialized for head pain, my body is specialized for head pain, and this is the annual month of reckoning, progress be damned.

I had been making great progress since April, typically another arch enemy month.  But somewhere between starting homeschool in earnest, learning to can pears, and Sasha tanking, I went from 7 total rescue med days last month to 11 so far this month, the last 4 consecutive.  4 consecutive rescue med days hasn't happened since June, during hormone week when I spent two of those days staring at the great glowing orb above me in the dentist chair, and before that it hadn't happened since February.  *string of highly creative expletives*

Pear season is short, gotta can pears for the year.  Sasha's new neurologist appointment is Monday, gotta fill out all the appropriate paperwork for that, plan and pack all the food water and meds, and deal with the aftermath of the drive there and back plus the skipped nap.  *more expletives*  At least the appointment is still a go after the *expletiving* time spent on the phone working out the insurance mix-up.  But oh my god, now we are SERIOUSLY homeschooling, and I, COULD, NOT, HATE, HOMESCHOOL, MORE.  It is a toxic energy suck.  Don't get me wrong, I love education and educating.  And boy, does Sasha love learning!  Bonus, the homeschool group or whatever I'm using is super supportive and amazing and helpful and wonderful.  But [creative expletiving] do we ever not have the health and well-being for it at present.  It's just a fucking never-ending nightmare.  We need to stop getting migraines to be able to do school PLUS the stupid amounts of food prep required for Sasha's survival!  Maybe Monday's appointment will bring the magic bullet that cures my baby...or at least the magic car crash that cures all our ills?

Assuming we don't meet our maker, Sucktember will end and hopefully beyond hope, we can start anew in Rocktober.  But if Craptober awaits, then maybe I'll try to grow a moustache in Movember and we'll just take it from there.  Maybe Sasha doesn't need to go to first grade at all.  Maybe I'm not entirely convinced she's going to survive childhood or have a "productive" adulthood even if she does make it.  Probably I should just work on getting her DogLand stories marketed and into print, and put the money away for her so she doesn't die unemployed, homeless, and in pain.  So maybe I'll get on that after zucchini season ends and pear season ends.   #DogLand2016, assuming survival readygo!

Several Cans

Homeschooling is kicking my ass.  Sasha's a great student and apparently I'm a decent teacher.  But it takes energy.

Canning pears is kicking my ass.  It's not...difficult, but it is meticulous and time-consuming and exact and hot.  And it also takes energy.

We should have enough dried zucchini chips soon.  68 half-gallon jars isn't quite enough to get us to next zucchini season, but it's getting close, assuming all our math is correct.  Not bad for dehydrating since the middle of June.  I wonder how many hours of work that accounts for?  Thankfully my mom is the peeling queen. (cue ABBA)

Sasha needs to stop getting migraines.  I'm waiting on a transfer to a pediatric headache specialist. [read:Sasha's 3d neurologist, more paperwork]  I'd like Sasha to be able to eat more food, sure.   But technically she has food to eat, be it stupid limited, stupid expensive, and completely unreasonable to procure.  However, she NEEDS to stop getting migraines.  It's killing me.  Thankfully she still plays and reads and eats and pees and poops.  But it's absofuckinglutely killing me, because I have to deal with her and take care of her and give[make] her meds and train her to deal with pain and how to relax and meditate and do occasional vomit cleanup etc., quite often with a migraine myself.  We are all going to die if she doesn't stop getting migraines.

And now between homeschool (which I honestly hate because it takes all my energy away) and food prep, I'm climbing back up the migraine ladder again.   So I added a new med, we'll see if it helps.

I want Sasha to stop getting migraines and to be able to attend school.  Then my limited energy can go toward growing/preserving food/trying to remember what it's like to be a human being.  Assuming I have to homeschool her for this entire year and I somehow DON'T get a household staff of any number, I don't see how we are going to come away from this in any sort of good way.  Everything costs more time and money and energy than I currently have.

I have a really hard time half-assing things, and there's too much accountability to half-ass school anyway.
We absolutely cannot half-ass food, or Sasha literally will not eat.
I haven't been to pilates in two weeks and I don't see my self going back until pear season is over at the earliest, which sucks and will only NOT help, but something's gotta give and I can't half-ass school or food.

So that's it.  One of us has got to stop getting migraines and achieve neuro-typical functionality.  That is the only logical answer.   <Readygo>

There is no aside

Monday:
-Physical Therapy appointment for migraine (Sasha)
-Call Sasha's Neurologist and tell him that her migraines are getting progressively more frequent since switching meds.

Tuesday:
-Physical Therapy appointment for migraine (Me)
-GP appointment so we can get Emily's Epi Pens refilled

I think the rest of the week is pretty clear tho.  In that time I need to dive headfirst into homeschooling Sasha for first grade since she's tanking again, and as always, keep processing summer food so she can eat all winter (fingers crossed).  Aw shit, I forgot about the phone calls I have to make regarding insurance mistakes about Em's last allergist appointment, and again, insurance mistakenly thinking Sasha has more insurance than she actually has.

^^^^^ All of this right here is why I fantasize about a swift and sudden car wreck taking us all out.  I would think only having 5 migraine rescue med days so far this month would really be helping things, and maybe it has been.  But being able to see things more clearly isn't always such a snappy thing, you feel?  I have not figured out how the special needs moms do it.  I would imagine there is some focus on the positive aspects of living life. *cricket, cricket*  I know it could be worse, it could always be worse.

I think probably the "invisible diseases" aspect of our live is hard.  You can't tell by looking at us that something is wrong.  You wouldn't know that Sasha can't drink bottled water or play outside for too long without having a reaction or getting a migraine.  You wouldn't know that I have to take a nap every day at the same time without fail (which is a hell of a lot harder than it sounds) or I get a migraine, or if I overexert myself I get a migraine, or if the lights are too bright or if it's too hot or if it's hormone week or if I get sick, I get a migraine.  You wouldn't look at us and know that none of us can eat the same foods without itching, having diarrhea, getting rashes, losing our minds, or going into anaphylactic shock.  So actually, all of This is why I fantasize about that swift and sudden car wreck.  That other stuff is just icing on the damn cake that no one can eat.

I don't know how the other special needs mom explain everything to everyone all the time.  I'm not even talking about ogling strangers, I mean just catching people up since it's so hard to keep up!  And also because our problems are so bizarre, some people can't seem to remember what I tell them anyway.  And then there's the doubters, the justification I sometimes feel the need to give.  You know, when people can't wrap their minds around your life, so you get the vibe that they're blaming you somehow, like maybe it's all in your head.  "Are you SURE?  Because (I have a friend who..., I read somewhere..., I found this website etc.)  I envy those who get to have normal conversations, like about where they went, what they did, and what they ate.  My god...

So all that aside, all, that, aside...

grain of joy

My biggest remotely attainable dream right now is to have a worship night at my house, I think.  As in, I think it's attainable, maybe.  Damn it, ok probably not, but that's why it's a dream.  But it's not like my dream of the girls and my mom and I running a marathon together while eating cheap, nut-laden protein bars.  That's more like a "fantasy".  Stranger things than worship night at my house have actually happened.  You know, like when I got paid for working in the field of my degree and shit like that.

Speaking of paying, here's a fun fact.  I'm now taking half the amount of meds I was taking before, milligrams wise.  And I'm paying almost 7 times the amount for it.  Same medication, smaller pill, fewer milligrams.   Because insurance.  *facepalm*  Yup, still working on that one in my infinite spare time and energy, when I'm not making food for Sasha, or getting migraines.  Please you guys, don't ever EVER get any kind of sick ever.  Also exciting is that two weeks after Sasha saw her neurologist, she finally started her new prescription.  (because the stupid compounding pharmacy dragged their ****ing feet) It's going to take an entire month to wean from the old one tho, so hell if I'm going to know for sure how the new one's affecting her for a good long time.  Convenient, since school begins fairly shortly.

My God, school.  Maybe Sasha will magically stop getting migraines and not have any new face or body rash.  That would be awesome.  Maybe she really WILL enter first grade and all I'll have to do is figure out how to feed her at school and keep her safe from corn and fight all Emily's school-food battles too!  You know, our lives would be infinitely easier if Sasha could even eat all the available local corn-free food.  She could have apples, berries, kiwi, persimmon, beans of all sorts, tomatoes, winter squash, stone fruits, eggs, I mean the list is huge.  But for whatever fucking reason, all those foods drive her insane.  She absolutely loses her mind and becomes completely unreasonable and throws fits.  But, at least now she now has a Physical Therapist who is a Giants fan, who bonus, has an office dog.  No one local (who takes her insurance) will see a 6-year-old for Biofeedback so she just got referred to physical therapy instead.  Again, don't get sick, and don't let your kids get sick.

See, this right here is why I need a worship night.  The problem is, I haven't seen a great reduction in migraine medicine days this month vs the last two.  If I can go the next 4 days sans meds tho, it'll be the first time I've had fewer than 10 rescue med days in a month in 2 years, since July 2013.  I'm still paying out the nose energy-wise the next day for any more functional days, which is a potential problem with worship night, or in fact any awesome activity requiring effort.  And being the limited, drought ridden zucchini season, we're bustin' tail over here to process as much as we can for winter, since it's one of the few foods Sasha can eat that's not a leafy green.  And as anyone who as ever busted tail can tell you, it takes quite a bit of effort.

A friend of mine asked recently how many doctors I had seen.  I had never stopped to count before and it turns out, more and more just kept coming to mind over the next several days.  Between the  girls and I and GPs, Allergists, Neurologists, Chiropractors etc, I had officially lost count.  I like Sasha's Physical Therapist.  He wrote down short term and long term goals, made good eye contact, was a good listener etc.  Beside that he had a picture of Matt Cain throwing his perfect game on the wall.  I am afraid our medical personnel parade is never going to end, and I don't know how to survive like this.  It sure feels like something has to change but I know people live in lots worse circumstances than us.  I also know that we were not mean to live in a constant state of haggard, worn, pained, and beaten.

Oh well.  Soup(made of greens), zucchini, cabbage, lettuce, broccoli, cheese(one kind), frozen avocado, and fish.  For these I am truly and utterly grateful.