Pretty Colors

Jesus, H, Christ.  Thank the good Lord that Sasha's head came under control, via my brain tiara which is approved for children as young as 8...everywhere in the world except for the US.  But I care?  She's taken pain meds once in the week or so since she started using it.  Once, down from 28 pain med days (sometimes more than once a day) out of the previous 48.  It's a freaking TENS unit with no side effects other than sleepiness, thank God.  We were having hellish nights of being up till 1, or getting up between 11 and 3 in pain, and now her head pain is negligible.  She still has abdominal pain, but it has been manageable.  So we'll see how this goes and pray the neurologist doesn't yell at me.   Shoot, I have meds prescribed for both girls that aren't approved for minors that absolutely DO have known side effects, so eff that mess, the fda can suck it.

It probably says a lot that I'm looking forward to my root canal tomorrow.  Like, a lot.  My dentist's chairs are Super comfortable, and I get to relax in one with two pairs of sunglasses on and get my sore tooth fixed.  I don't even understand, I had a small cavity in the side of a tooth that my dentist was confused as to how I even got, he filled it, and it got infected and now I need a root canal.  I guess I'm not confused, I've just never had that happen.  But there is so much good tooth left I may not even need a cap, and it's supposed to be one of the easiest teeth to um, root out or canal or whatever.  But prayers are still appreciated.  I've had a migraine for near a week due to our first foray to the friday market plus heat plus hormones, and I really need to be up to hitting the next friday market to search for pears.

And then there's my ever broken freeze dryer.  *smh*  Stupid Harvest Right was supposed to call me today and walk me through ANOTHER repair to try, but they didn't call.  I really need that thing to have been working, and now I need it to kick in fast.  (pause for not-irate-but-not-happy-email) Ok, I emailed and vented a little bit.  This is ridiculous.

So Emily.  In my bullet journal research I came across something called spiraldex, a time management tool.  It looks like a seashell and I saw a lady using it to track chronic pain, so I'm going to have Emily start using it to track fatigue, screen time, and a few other things.  It'll be a nice visual which will hopefully help us manage symptoms and life in general.  I've already got stuff to transfer into my bullet journal when it arrives, (just a big moleskine) and it's already helping me keep track of the insanity that goes on around here, so I'm a fan.  I even found the blog of a chronically ill mom who homeschools one of her two special needs kids, I kid you not!  I have searched for blogs like this and was convinced they didn't exist.  She bullet journals of course, which help maintain her sanity.  Whee!

It seems we can never get going, never find a rhythm or routine.  We are constantly in crisis and cleanup mode.  I'M LOOKING FORWARD TO A ROOT CANAL FOR CRAP'S SAKE.  But these things help: Organization, pretty colors, venting, and not feeling completely alone.  And progress, always progress.  Man I hope Harvest Right comps me one of their new, large capacity machines for all the damn hassle this one has been.  And thank God for the brain tiara, and Sasha's 8yr old brains.  Piece of crap, she's been getting migraines since she was 4.  This year, the girls have each gotten migraines for half their lives.  I haven't even been chronic for half my life yet, not till next year.  I will color in a picture with pretty colors now.