Success is melting my face off

Holidays are so hard.  Sasha used to ask me which one was my favorite until I kept answering that I hate them all, and I do.  Today was a complete success by any standard of ours, Emily had bread, Sasha had hot chocolate of all things, and we accomplished present opening as a family that included their dad.  There was no vomit, no pain meds.  And the house isn't even completely torn up at the end of it all.

My face feels like melting.  Sasha has struggled hard all day.  Thank God no family invites us anywhere or comes over, because the day is overwhelming as it is.  There was regular food prep to be done beside the extra stuff, and it's having any extra anything I think that blows it all up.  Being so stretched to capacity at all times physically, mentally, it's no wonder this is what a successful day feels like, a nap and a half in.

I think what else makes it so hard is not having a frame of reference.  In college everything is weighed and measured to the point where whether or not you even get to stay depends on how well you perform in the regimented details, migraine every day be damned.  I'm so glad I didn't know then that would be the easy stuff.  Jesus, I remember the first killer migraine I had in school, second semester in, my friends almost took me to the hospital because I was babbling somewhat deliriously in the back of their car.  I remember getting to bed to sleep it off and waking up still in a lot of pain, wandering down the hall and asking someone for pain meds since I was so unprepared. *shudders*  But the pain was all my own to manage, as well as the finances.

Clearly there are measures of success now, or the state would intervene!  And I guess now I do feel successful in many ways, pulling library books and dog toys out of my bed regularly.  It's just so hard to pull the wonder out of my head when I see pictures of people I know, doing things, getting together, smiling.  How in the hell do they do that?  I know we struggle but how do we struggle THIS much?  And how have we struggle This much for This long?  It doesn't help that seriously every medical person we ever see calls us a "tough case" and refers us elsewhere for further study.  Not that I don't love our current team, but uh, we're our medical team's edge cases. 

It's just hard to wrap my mind around sometimes.  Or maybe it's just hard being tired.  Or maybe it's just Christmas, a successful holiday.  Lots of chronically ill folks have to redo everything, are homebound, and many are way worse off than we are.  We are surrounded by some incredible friends and family.  And seriously, no vomit cleanup OR pain meds?  Incredible.  I won't lie tho, my heart breaks for lack of wellness, that we measure success by lack of vomit cleanup or administration of pain meds, which we only missed by careful management.  Merry Christmas anyway, and a Happy Fking New Year.

Christmas Letter?

The girls are outside skating, their new obsession.  It's so good for them too, because the remedy for fatigue is exercise, according to their neurologist and common sense.  Sasha must be feeling better.  After no puke for a month, she has puked twice in past two days with migraine.  But  everything is still more manageable since her Trigger Point Injection kicked in, 7 weeks after she got it.  It was either that or the miracle of camel milk, a  new food we've been able to add.

But back to fatigue, I know we'd be a lot more concerned about Emily if everything else weren't more pressing at present.  She's still so far from normal, from where she was when her migraine kicked back in two years ago.  However, she has improved a lot since then and is actively managing much better.  I mean, I did just have to clean my keyboard, trackpad, and screen just to be able to type without gagging, but she recognized that she feels better and sleeps better when she gets outside and exercises a lot so even when she's fatigued, she makes real effort to go do just that.  The rest of the time if she's not recovering in my hammock, she's probably coding or talking to her cousin online while coding, or reading of course.  She has powered through some nice math lately thanks to my friend's Fairy Garden Math Advent Calendar.  We're behind again, but we'll get through before the wise men find the baby.

The girls had their favorite adopted cousin stay for about 5 days recently, my oldest bestest friend's son.  They had a blast, and Sasha didn't crash until after he left which is very typical.  But that she made it through almost the entire week and played and ran around and even had a huge playdate with a couple other friends was outstanding.  I'm sure it's why she's had a couple more serious migraine days lately.  So worth it.  Such a change from the past year maybe, especially since September when everyone's everything hit the fan.

I usually have a difficult September, sometimes October.  This year it was September, October, and November.  I added a medicine and avoided another week in the hospital for DHE infusions for Christmas so that was a win, and since Sasha's TPI worked, she avoided the hospital infusions too.  We were both headed that way and were going to have to decide who went first?!  Very thankfully, that nightmare has been avoided.

So I guess we continue to homeschool and see what happens!  I have put in an order for an upgraded skeleton, hopefully that goes through.  We need a new Richard in our life.  I got noise canceling earphones and they are LIFE CHANGING.  I should have bought them earlier.  Since September I've become a lot more light sensitive, and being overdue for new glasses, my super light-blocking prescription migraine glasses should arrive soon.  I will look like a big freak, or a race car driving DJ.  Bring It On, Momma's got stuff to do.  Plus between those and the headphones, that's half my head holes covered from puke splash.