Friday, May 4, 2018

Em Has A New Diagnosis omgwhut

Pediatric Chronic Fatigue Syndrome.  I can't even...but I have been even-ing.  Jesus Christ, I could have written the fact sheet!  Although it's nice to read a fact sheet written by someone else about a disease that someone else has, sort of.  I mean, this means that other kids have what Emily has.  Lemme start over.

We UCSFed and it was probably our best and easiest trip ever, because I'm getting better at packing, the kids are getting better at going, and my friend drove us in her big comfy SUV.  I didn't really take the neurologist super seriously (my bad) when he diagnosed Em with chronic fatigue.  I mean, we discussed the blessedness of having access to a pediatric healthcare provider who can rule things out and not attribute a difficult-to-diagnose disease to "being in your head", but I really didn't grasp PCFS vs pediatric migraine until I started reading about it.

And now I don't know what is so different, since there is no real treatment beside what we already do.  I mean, we're super lucky to even have a direction, a diagnosis before adolescence.  We've even ruled out food allergy!  Or, ruled it in rather.  Thinking back, she clearly had abdominal migraine in kinder/first grade, and it didn't come with fatigue.  In fourth grade, I think it was also abdominal migraine with a heavy side of fatigue, and then fatigue quickly took over with a side of abdominal migraine.  Now she hasn't had pain in months, and it's just fatigue.  Just pediatric myalgic encephalomyelitis.  And it sucks so much ass.  I'm reading on all the pages what it's like and I'm reading what she goes through every day, so that really does help.  Finally, an answer for Emily!  Goddamnit, that answer sucks!  AAAAAUUUGH!!!

We're tightening up her diet too, eliminating more corn.  And also moving.  And doing state testing.

*i'm so zen i'm zen af i'm a zen fairy floating away on the zen breeze kicking zen booty bc that is how zen works*

I'm back on Depakote to prevent extra migraine because we're moving, but as soon as we move and settle, school is going to start again.  Something is wrong deep in my body and nothing so far can address it.  Oh, maybe CGRP migraine meds will be available and paid for my insurance by then. Haha.
At least Sasha is doing better with her second trigger point injection.  I mean, she still doesn't sleep at night unless it's in my bed and on my schedule, but we're not in panic mode during the day shift.  And night shift involves sleeping, so major bonus.

We're all really excited about the new house.  We should know the moving date soon, hopefully we'll close by the end of the month.  We'll need so much help since the girls and I are pretty much useless physically and also still trying to "school".  *double facepalms*  You know, it's good to have the problem of so much food and food related equipment to move.  We really are blessed with good fortune and abundance.  So suck that universe.

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