Imagine side effects are your normal

 I want you to imagine you got a covid vaccine, and you get side effects: headache, chills, body aches, fatigue.  All you want to do is stay in bed and sleep it off.  Now imagine this is how you feel every day for the rest of your life: headache, chills, body aches, fatigue.  Only both your kids are also sick, and you have to homeschool them, and you have to constantly be on the phone with doctors, hospitals, schedulers, pharmacies, and insurance.  And if you want income, you have to manage your emotionally abusive ex-husband (who lives with you btw) due to his gambling addiction.  Don't forget your kids have severe food allergies, and one is autistic.  READY GO.

Now, this is why I NEED you to fight voter suppression, vote for universal healthcare, and universal basic income.  Thanks.

The Science Of Whimsy

 We spend a lot of time on the porch in the sun these days.  (We spend as much time as we can on the street in the rain too, there just isn't nearly as much of it.) Today for the first time I wondered if we would ever long for these days, before the kids grew up, when we would have tea parties and paint parties, singing and imagining flying through different dimensions, picking up fellow travelers.  God, it sounds so idyllic, which is what made me wonder if we'd ever tie nostalgia to a global plague, extreme social isolation, a potentially illegal sabbatical from high school, and of course never ending pain and illness management.  We've worked so hard to get here, it's only right we should enjoy it.  I hope we don't long for it though.  I hope this is truly a starting point.

Oh right, a starting point.  I'm well past that, having been on my period since Dec. 2018.  It has finally been established I have cysts on my ovaries and fibroids on my uterus, thanks to some god awful procedures about which I was not warned.  An MRI has been ordered for more details which will I suppose, inform the course of action.  My only concern is what effect said action will have on migraine.  Other than that, I have no need of any of those organs and they can yeet.  And wouldn't I love an end to the occasional pain that makes it impossible to walk, and radiates down my leg and across my back?  It's just so minor compared with everything else.

Anyway, I'm taking Child One to pediatric rheumatology on monday to rule out autoimmune things.  All the procedures this month have screwed with my migraine med days, so I'm glad that will be technically next month.  But of course, more procedures follow.  Anyway it'll be good to rule stuff out.  We'll still be stuck with an almost useless diagnosis of ME/CFS, but typically the fewer diagnosis the better.

I guess it's up to us to maintain the habits we enjoy, like spending time on the porch together.  Even if we never get the energy to write songs or publish books together or any other dreams we've dreamed, we have always enjoyed collaborating on silly stuff.  It takes an incredible amount of intentional whimsy to battle depression, as it turns out.  I know this is disjointed as hell, but I'm putting energy into singing! So I'm still tired, always tired, never not tired.  But music definitely makes things better.

An Old Diagnosis

 oh my god, fuck FUCK!  Ok, we are as prepared for this as we could possibly be it's fine, really it's not fine but it's going to be...well it's going to be.  Child One had a migraine and took nausea and pain meds and that hasn't happened in years.  But the good news is they worked. My unease lies in the fact he's still in the ucsf pediatric headache system because this is the way of things.  You have a family history of migraine, you present with abdominal migraine as a child.  It may even resolve for a while but you usually end up with some form of classical migraine eventually.  Child One presented abdominally at age 5, was extremely well controlled with meds somewhere into age six, was slammed again at age 9 with both abdominal migraine and ME/CFS, resolved somewhere between 11/12, and is now 14.  The pain is not considered chronic, he usually only gets head pain due to heat.  While that heat threshold is usually low, it's not usually 70 degrees low. Fuck.  FUCK.  Jesus, it's the middle of winter...

But ok, like I said, this is actually the ideal time.  It's the Sabbatical of Happiness, corn is no longer an issue so any and all meds are on the table, we are in the best place we've ever been in, plague notwithstanding.  And, AND!!!, I have fought the goddamn homeschool system in every direction with regard to Child Two and migraine and mental health so I am a fucking pro.  All the pieces are in place, I've updated the portfolio, and I know exactly who to call when the next appointment is needed if it's even needed.  And who are we kidding, now it's just a waiting game to see when it's going to be needed, and that is anyone's guess.  It's February and thanks to climate change and plague, it could be any time, it could very well be next week. In the before times, I'd say we had at least until August.

Speaking of Child Two, it's been a nightmare managing pain all the damn time.  T minus four days till the trigger point.  Although to be clear, both kids are singing so loudly I'm having to hole up in my closet to even write this.  😏We're so awesome.

Music is also pain

 I returned to music and it hurt like hell.  It's kind of like having a baby, that feeling of any pain being worth it.  I mean, it's not quite as extreme, and I didn't play any music for years because I had to take care of my actual children and manage all our illnesses.  Look, it's complicated.  It wasn't exhilaration either, playing my violin for the first time in years, it was more like, maybe regrowing a limb?  So maybe exhilaration was part of it, but that seems trite compared to the depths of what all was going on.  Which is probably why, like an idiot, I played and recorded an entire ukulele song the following morning and subsequently DIED, and will be playing nothing today.  I am however allowed to sing today and here is what's cool.  I first recorded myself singing (in this new era) on Dec 20, and I got a migraine from it.  My brains were getting better even tho I was still getting migraines but I kept singing.  I had six migraine rescue med days in December (down from ten in November), four in January, and even tho I absolutely abused my body the past two days and definitely took regular pain meds for it, I did not get a migraine.  Repeat, I did not get a migraine.

Also, I slept all night and much like playing the violin, I honestly do not recall the last time that happened.  We're talking over seven hours in a row.  It feels like a hug, like a really good hug from someone who knows you and likes you anyway.  Not sleeping anymore has really screwed up my ability to think straight and make complete sentences and stuff.  This is particularly bad considering the amount of medical details I have to chart and keep straight for all the appointments I have to schedule and keep straight.  I have no idea what happened either, I just stopped getting good sleep one night about three weeks ago and it's been on and off but mostly off ever since.  I'm mostly not napping either and if I ever do nap, it's brief.  I used to have a weird night of sleep every so often for no apparent reason, or if I overdid things that day, oddly.  My only guess is the long built up stress of plague and sick children.

Child Two is in so much pain.  Every day is just managing pain and it takes so much work.  We manage the shit out of it too.  Art therapy, baths, sun time, meditation, hammock and music time, finally therapists are available again to help manage depression, we have a plan to do math so the state of California isn't mad at me on top of everything else...Jesus.  Child one is doing phenomenally better since being pulled from school for sabbatical to learn to manage disabling ME/CFS and ADHD plus bonus global plague.  By the way, we did that.  I mean, we're a registered private school and we are continuing education but it's no longer the crippling additive it was.  One less crippling additive thanks.  There are kind of still too many tho. *breathing that shit out* Ok, singing only today.

Child Two has a trigger point injection in T minus five days and those five days are going to suck ass.  Then it's going to take a couple weeks at least for that injection to kick in.  Good god, I hate this song.  I think we're learned that for winter, we need to schedule injections back on our 6-8 week cycle, whereas we can stretch them back out to 10 in the summer when it's not storming because weather fucks up that head of hers.  *more deep breaths* I'm going to dive back into my new TikTok music crushes, because they are giving me life and sustaining me and motivating me right now.  Oh my god, Ben Mather you absolute beautiful freak.  He also has a YouTube channel that is worth it for the heartfelt kazoo solos alone. 💕 

https://www.tiktok.com/@bensrightbrain?lang=en