Friday, June 5, 2015

5 of 6

I'm not sure how we survived today, but we did.  I guess it was a series of unscheduled naps, new meds, good old fashioned sucking up the pain, and plenty of the usual awkward conversation.  And as much as I hated the aberration in schedule among other things, I'm glad we did it, and I'm glad it's over.  We survived the last gd surprise food of the school year *huge eye roll*, and we are officially on summer break, even my mom.

I met a nice parent today, one I don't usually talk to.  I suppose that's why she assumed I was married.  (never do that plz)  That's probably also why the fact that I homeschool one kid for medical reasons came up.  She got my address to invite us to a summer birthday party, even after our conversations about food allergies, but I don't know if it's because she said she wanted it at the beginning of the the conversation and she felt obligated or what.  Thankfully I didn't spend the whole conversation having to explain our life, so we'll see.  I mean, just most of it.  But the fact I had a whole conversation is probably a triumph.

See, today is Friday and that normally has us locked in to the Friday farmers market, rain or shine, school activity, migraine or otherwise.  But since Sasha failed the blueberries and more people are selling zucchinis now, the Saturday and Sunday markets are more viable shopping options.  Selling point one.  Also Sasha has been 6 consecutive days without coffee, and 5 of 6 days without any rescue meds at all.  Selling point two.  HUGE selling point actually.  But Debbie Downering the whole thing is the fact that my noggin's been aching for a few days. *smh*  But being the last day of school with bonus surprise food I was alerted to at 6:50 this morning, I figured I could suck it up since the other stars were aligned.  I'm not sorry.  We made it, and Lord willing we'll be able to get all the food we need for Sasha this week between the Saturday and Sunday markets, and if we're really lucky, just the Saturday market.

Seriously, I've been praying and screaming at God for some sort of progress somewhere, anywhere be it food or on the migraine front.  Emily has been cruising since December of 2013, and since we cut the gluten and dairy, she has really been doing well.  She has even remarked that she can run faster and longer, and keep up with the other kids while playing soccer, not to mention her way improved behavior.  Now she's back to her normal stubborn self as opposed to her super awful self.  But for Sasha to be nearly a week without rescue meds is something I didn't know if I'd ever see.  It's such an intimidating way to live, with these monsters in your brain, and in your children's brains.  It's just a waiting game now, wondering how well the meds will work for how long.  The monsters will never go away.

I feel like today was sort of like learning how to swim.  I've just had to hold on to the wall for so long, and for the first time in a long time, I was able to let go for just a moment.  I splashed around, got a stitch in my side, swallowed a bunch of water, and got back to the side as quickly as possible.  I definitely had to take rescue meds when we got home today, and I'm still waiting for the DHE to kick in fully.  Two more weeks and we'll see.  But I've got more physical therapy coming, and I'm going to meditate my face off if it kills me.  If Sasha is feeling human again, that really opens up some options, even if her diet is still insanely limited.

I do hope my head stops hurting tomorrow.  We have a lot of cleaning and we'll have a lot of food processing to do.  Plus it sucks ass when your head has hurt for days and days in a row.  Also I want to enjoy the excitement of life again.  I remember loving life, rafting,  swimming the rapids, and jumping off rocks into the water even though it scared me.  Holy geeze, I used to surf!  Never very well at ALL, but I would dream of being tumbled in a wave and those were good dreams.  It would be great to get back in the water tomorrow.